Letters from parents and professionals (mostly to me, but also some selections from the Internet)

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Richard,

Just wanted to let you know that I am still actively advocating for special needs children. Had a little battle with cancer but doing very well now and cancer free. I am right now assisting a parent of a 6 year old autistic child thru due process. The parent had gotten my contact information from your site. There are hardly any advocates in my area. District brought Board attorney to meetings.  I just wanted to thank you for allowing me to be listed on your site.  As for my own son, he is doing fantastic and is a junior in high school now, fully included with his own 1:1 special ed teacher and aide to assist him in the general ed classroom. Also I want to thank you for all the time and effort you put into your website.

Sincerely,

*


Hello Mr. Saffran,
 
I have been a board certified behavior analyst for 3 years, and have worked in the field for over 10.  I remember finding your website early on in my career while I was still quite "green," and finding it a valuable resource.  I notice you have not updated the website since September 2012...I hope that this is a resource you will continue to maintain.
 
I commend you for your accurate description of ABA as a technology and science, rather than a treatment method.  All too often the terms "ABA," "Verbal Behavior," and the like are loosely thrown around as names of interventions, rather than the broad principles and technologies behind what we do.  Interventions are not simply Discrete Trial Training, Incidental Teaching, etc.  It should be based on the needs and learning style of the child, and there are many ways to do it.
 
In looking at many of the posted testimonials and stories for parents, I would like to ask that you list and/or recommend that parents visit the website for the Behavior Analyst Certification Board (www.bacb.com).  This website contains a multitude of information for consumers, including the ethical and conduct guildines BCBAs follow, information regarding what a BCBA does, and a directory of BCBAs.  Parents who are seeking high quality programs based on ABA likely will want to consult a BCBA, as they recieve the specialized training to implement many of the procedures involved.
 
Another great resource for parents who are looking for high quality, evidence-based intervention for their child is the Association for Science in Autism Treatment (ASAT; www.asatonline.org).  I am not affiliated with ASAT, but find it to be a valuable resource.
 
Again, thank you for all you are doing to assist families.  It is refreshing to see.
 
* MS BCBA


Dear Mr Saffran,

I have been using your resources and just wished to express my gratitude to you and share my son's story.

My son D was diagnosed with borderline autism when he was 3.  He had earlier been given a diagnosis of language delay at 20 months.  He had a neurotypical twin so I picked up the language problem early on.  By about 2.5 years he was stimming constantly, screeching maybe 50 times a day, avoiding eye contact or social contact and his language was very limited.  He did not use the word 'Mama' until he was about 3.  I had him in speech therapy at 20 months, but this did very little.  When he got the ASD diagnosis we were devastated.  We did our research and realised that ABA was the gold standard for autism therapy.  He commenced a programme of 16 hours a week ABA with four therapists, plus an hour a day of parental therapy.  The next year he did 18 hours as well as full time kindy.  It cost us about $40K each year.

D is now 5 1/2 years old.  We did not disclose his diagnosis to his very expensive, very on the ball private school.  They had him and all other children screened by their in house OT, speechie and special ed team when he first started school.  I also had a full assessment done by an independent speech therapist, which diagnosed him as having 'moderate language delay', but this was changed to 'moderate language disorder' on my persuasion, as I feel that a delay would have resolved by now.  None of these experienced professionals have even raised ASD.  We are learning to let go of the label.

I wanted to share our family's experience to help any parent who is struggling to decide what therapy is best for their child, or whether the cost is worth it.  Sell your house if you have to.  Cash in your super.  Do whatever it takes, but GET THIS THERAPY.  Don't believe the knockers, ABA will give your child and your family the best chance for a normal life.  D stopped screaming within a month.  He stopped stimming in any obvious way within a year.  He is now sociable, keeping up with his schoolwork, has friends, and NOBODY even suspects that he was ever diagnosed with autism.  I find him quirky but even I - who is attuned to every ASD sign - could not place him within that ballpark anymore.

Thanks for listening and all the information you continue to provide.

Regards

Thanks for writing. I am impressed by your success story, and of course
happy to hear that my very low budget Web site helped you and your son.
That's the whole point!

You didn't say what country you live in, but if you're also in the US your
story reminds me that for whatever reason parents who want to do the right
thing are still not being properly assisted by early intervention, and having
to pay out of pocket - I assume that's part of your story. Some day perhaps
the various government agencies will take all this seriously.

Please let me know if you ever have more questions -

Best wishes,

Richard Saffran

Hi Richard

No we are in Australia.  The assistance you get here depends on which State you happen to live in.  In some states I'm told ABA is provided by the government to some degree.  Not in my state (South Australia).

Across the country, when your child is diagnosed with ASD the government gives you a grant of $12K - $6K a year over two years, and a carer's allowance (not means tested) of $114/ft, as well as annual bonus payments (two lots of $600).  My $12K grant paid for 3 months of ABA, then we were on our own.

You can also claim 20% of medical expenses back as a tax rebate once you've paid about $2000 - note this is a rebate NOT a deduction, so you only get money back if you've paid tax through the year.  So if you've quit your job to do ABA with your child and are using all your life savings, and are under the tax threshold, you won't get anything back through tax.  You will however get a carer's payment of $700/ft and rent assistance of $115/ft if you fall within the means test, as well as potentially public housing.  Public housing in SA and across Australia is actually pretty good, but the waiting list is v long and people getting out of jail get favoured over families with a disabled member.  

The parents would also receive family tax benefits each fortnight, which are thousands of dollars over the course of the year.  I think $6 or $7K?  You also get an automatic health care card, which gives you mainly gap-free treatment at doctors and dentists, and most scripts for $6 each.

We were not eligible for anything other than the $115 allowance, tax rebate and health care card (for my son alone), but that saved us nearly $10K, which does help.  

Since I stopped working to care for my son we live pretty frugally and make ends meet (sort of).  I budget everything and we just don't buy a lot.  We have a clunky old tiny tv, we don't have cable, I don't have a mobile phone, we don't drink or smoke or do anything much!  We spend all our money on school fees and therapy.  But it is worth it!

It does make me think though.  If intensive ABA works wouldn't it make sense for the government to fund it?  All those children who would otherwise be on a disability pension for life, in public housing, receiving all these benefits would be productive citizens.  Doesn't it make sense from a simply economic point of view?  That seems to be the only one that registers with them.

The $12K is a good start but it is just not enough!  I tell newly diagnosed parents to use it to deal with just ONE issue - eg. sleep problems, toileting.  I had my ABA programme toilet my son when he was 4 years old.  It cost me $3500 and was incredibly worth it.   It really changed our lives and opened up so many doors for him.  My firm has a 100% success rate with toileting over 10 years.  Since then two parents with children on the spectrum have accessed the toileting programme - one with a 9 year old!  And both are now fully toileted.  That programme on its own would be worth funding.  

Anyway, sorry for the essay.  I just thought you might like a bit more detail about how we do things on the other side of the planet :)

Regards


Hello,

I am a special education teacher in a NYC public school.  I have a student in class who has PDD  and suffers from seizures and never received early intervention services.  He is not toilet trained and is expected to learn at the same rate as other Kindergarteners. 

Currently child has an aide who is not trained to help him.  He receives speech. o/t and p/t.

How do I request help?   A behaviorist for him / mom ?  Mom needs support but she is in denial too.

Help me to help him.


Why I take every opportunity to say - if at all possible, talk to other parents before you sign up or pay for anything

Dear Richard,

I used an 'educational advocate' listed as a resource in your website. It is my opinion this woman is a joke. She attended one PPT meeting before I realized my mistake in hiring her. She embarrassed me in front of my son's teachers, and caused delays and detour from important issues at hand. I hope you consider my experience with her when you list her alongside people who may actually have the willingness and knowledge to advocate. * does not. She simply preyed on this busy parent's wish to get the school to stop the delays. ...

My experience with this woman was not a good one. Indeed, she conned me for $*,*** for this one meeting, and even if she had been competent, I know of no one who's time is worth that. She is a liar and caused me much harm, and also, she lied about the job she did when she sued me for more money, not earned and not agreed upon.

This woman is the reason why advocates should be licensed, reported, and above all, should have real credentials. She just armed herself with a blank contract. It is truly sickening to know she represents herself as an advocate. She is disingenuous and is out to prey on parents too busy to check for real credentials.

I hope you know that by listing her, you make it seem as if her services are worth something. Believe me, they were NOT. "Con Advocate" is an appropriate email address for her. I would not wish her on anyone. Call the * Public School district to confirm my story. They found her attendance of no value either, she was disruptive and insulting, and any gained grounds were in spite of her.

You might want to screen qualified from the con's in you listing. My email is the true 'voice of experience'   - she is a detriment to the field.

Sincerely,


Love your resources and web site, but hate your title to the page.  I find "recovery" offensive. I think your excellent materials might not be accessed by some parents because of the title.  Just a thought.


You are such a blessing to share this Information.  I have been seeking out this type of information. For my son who is 3yrs old.   I took him to the children,s hospital yesterday, and their diagnosis was PPD. Prior to this I'd been combing the Internet for natural ways to help a child that is on the spectrum.  I found an interest in biomedical treatment and ABA but saw how expensive biomedical treatment is. So, I just began the low end treatment of cod liver oil and Epsom salt baths for detoxing.  All and all I thank you sooo much for even posting a thorough site to help other parents cut through the red tape and find possible working solutions and posting sites for getting assistance.

I wish you continued success and blessings!


Good afternoon Mr. Saffran,

First, I would like to express my respect and gratitude for all the time, work and effort you have put into informing parents about the services available to help their special needs children. I refer to your links quite often as new situations arise, which seems to be increasingly as of late. 

Is there any way to know which states provide the best services? My son is 7 and has an Autism diagnois with PDD/NOS, he attends a private school, speech therapy and OT. His neurologist has recently informed me that we are at the end of what they can do and that he needs a behavior psychiatrist. I have tried to get ABA therapy for him, but Medicaid wont cover it. I am a single mother of 3, living in Florida. I would relocate to another dimension if it helped my son :) Any advice is appreciated.

Again, Thank you for all you do!


Hi Richard

I am a mom in South Africa of Ruben (8) and I speak on behalf of so very many families that I have made contact with regarding a proper, functional, outcome based learning programme for our children.

We are in desperate, desperate, desperate need of this resource for the children in South Africa that are just wasting away because they do not fit into the “normal” mould of school going children.  As parents we are desperate for the assistance of professionals that will help us tap into this amazing programme in SA to the extent that I can see there are centres out in the USA, we have very limited facilities of this level to turn to…. There just is not enough help out here for our children!

Do you know or have any more names of professionals that work this programme that we may contact in SA?  The small number I do know of do not have enough hours in a day or do not operate a wide enough geographical area, rendering a large number of our children with no hope!

Your assistance in this regard would be appreciated beyond measure


Dear Richard,

I am French and am the mother of a 4.5 years old boy with High functionning autism who really appreciate your website.
He is under ABA treatment with fantastic success so far.

France is one of the most [backwards] place in Europe as far as autistic people treatment is concerned.
Phychoanalysis , supported by Freud, Bettelheim, Winicott ,and all these kind of stupid stuff, rule French autistic care in France.

Very very few professionnal are trained in French university . Only one of them , in fact, runs a ABA master which is at the moment under threat.

We , the few parents who have the luck to get a right and professionnal ABA treatment are running currently a petition to ask government to play his role to improve the access to ABA ressources , and to open university doors to ABA masters and degrees.

We need all the support we can get, especially from more "autism care civilized " countries, and people.

We have launched a petition, that you will find here:

http://autismeinfantile.com/informations/actualites/modifier-un-comportement-cest-un-metier-nous-voulons-que-les-professionnels-de-laba-soient-formes-a-luniversite/ 

Please sign to help us iff you can , leave your comments, and spread the word !

Thank you very much for your support !

With Warm Regards

Béatrice Bolling


Goodafternoon

I am a mother to a son who is 2 years 8 months old and has been diagnosed as Autistic. I have recently found out about a school that offers ABA Therapy for Autistic Children. I am trying to raise funds for my son. Please tell me more about ABA Therapy. Does it really make that much difference? Is it really worth investing in it for the prices are R4000 per month for 5 hours a day.

I am in South Africa.

Thank you 
Dear Richard and Jennifer,

My son will be 3 in May and I am just totally confused as what I can do. The EI people have not helped he at all, and unfortunately they forgot about him for 5 months and now that he will be 3 they are just going to hand him over to the school system. His evaluation papers are a joke. He cant do 1/3 of what they say he can do. We just don’t know what to do? If you have any suggestions we would be grateful. It sound like you have much expertise. If you could please call us or send us your number so we can speak with you.

Thanks and God bless you both

Florida Kid Care insurance does cover it fully, under Medicaid Title
21.  However, if you are super poor they automatically put you Medicaid
Tiltle 19, which does NOT cover ABA therapy.

It makes no sense at all.

When I tried to call and switch to Kid Care I was told my income is too
low and they would force me to Medicaid.

There is currently a case being litigated here in Miami for this exact
issue.

Thanks for the website,

God Bless,

* mom of autistic child with speech delay


A Mom writes of her two young boys, both with life-altering diseases, who have had different treatment in every detail: medical screening, treatment intensity, setting, training of the specialists, accountability for the outcome

Dear Richard and Jennifer -

First I want to thank you for sharing the resources and experiences you have had in researching and advocating for a program for your son. I just found your resources pages today and - while juggling the kids - have been reading and relating to so much of what I read. I am emailing since I feel like I am at my wits end and would appreciate any guidance re. how to get an effective program in place for my son. I have two wonderful boys - birth with special needs - and my energies have been stretched in many ways over the past two years. My younger son, *, was diagnosed with a brain tumor last spring and is doing beautifully - but also has had an onset of tics and ocd behaviors. My older son has neurological issues effecting speech/motor/vision -- but  also long suspected he was on the spectrum. As was true w/your son - our town preschool program was about 10 hours a week...with pull-outs for his therapies. The neurologists we were seeing were more focused on the neuromotor issues and didn't see autism (he is pretty connected with adults). School kept saying they also didn't see autism or even anxiety...In retrospect surely I should have pursued a more in-depth eval sooner...but as I asked and expressed concerns I kept being reassured. Convinced that * was making little progress with social skills (and becoming both dependent on his para, increasingly anxious and a saavy participant in the schools special ed system...) I pulled him and tried a year in a waldorf school. He actually made good progress with the peers part...I think because the teachers there are quite firm about limiting their interaction with kids so peers were all that there was and also was a much calmer smaller environment. But at the same time...the behavior issues became more apparent and we finally went for an eval with a psychiatrist who immediately diagnosed (just before his 6th birthday) and that PDD-NOS diagnosis has been confirmed many times over. I have now been through 3 PPTs trying to get ABA in place...but with no luck. I know he will not make the progress he needs without a better kind of intervention. He is making some steady progress with the home program we have in place in the bits of time after school. Whenever I try to give this more time and energy medical problems seem to draw me away...yet recent incidents at school have shown me how far off things are. I'm about ready to home school and try to max out our home program as well...but know that the best thing would be a school based ABA program. I feel so fortunate that my son is "high functioning" - yet at the same time...he is unable to operate without his 1:1 at school and also at home needs help with most tasks. I think he is so bright so folks assume that ABA isn't appropriate...also now they will say too old...

I know I am going on and on...but feeling desperate. I had always been calm and collected at PPTs until this year. I just don't know where to go from here. We have hired an advocate - yet she has been out of touch. I was comforted to know your wife got to a point where she was upset at a meeting as well. I always treat our team with respect...yet I feel like I need everyone in our lives to realize that an effective program is essential for * and needs to happen now! When my younger son's brain tumor was diagnosed everything stopped and we received tremendous support from our family and friends. Now that we are on the other side of that (quite fortunately) I am saying we NEED to make this happen.

OK -- my apologies....I have gone on far too long. I just felt that in reading your site that I had found parents who had been through this journey and found what they needed for their son.

Thank you - 

...

Dear Richard...

Thank you so much for your reply. It is helpful as I sit here tonight still wondering if in fact I am seeing things clearly (that my son is in need of a very different kind of program) or if the school team is right (things are going pretty well overall - their interventions may just need tweaking). When I trust my intuition - I know that the individualized ABA we do in our home program has * functioning at a much higher level than what is happening at school. He is also able to make progress and practice skills even on an "off day". We will move forward with the advocate for this first PPT on wednesday - but may need to move to more legal support depending on how it goes. The cost was six times as much...and that was daunting since it seemed like something I should be able to navigate on my own. I think I am still concerned that as we move forward with the legal side - relations with the school will go downhill fast and Peter won't be learning in a supportive environment with a team that truly believes in his program.

In terms of the dichotomy between the two cases...in some ways the brain tumor and the autism as separate issues are night and day - but in other ways more overlap than you would think. In the case of my younger son - we are just beginning to realize the array of psychological and behavioral concerns that are emerging. He is clearly not on the spectrum - but suffers from anxiety and many OCD like behaviors and has recently developed motor tics. [Our state] recently passed an autism insurance reform bill and the our policy falls under the mandate so my older son actually has much better coverage for therapies (even PT, OT and Speech) than my younger son. The brain tumor was most definitely the most terrifying thing we have been through - but at the same time in our case - as the decisions regarding the best treatment were made by experts and my job was to be the parent - providing love and comfort. The one piece that is quite similar is that post surgery many families find themselves at home trying to figure out themselves where to go and what to do for rehab - in our case dealing with PT/speech/OT from a visiting nurse association with almost no pediatric experience. The changes post surgery can also be cognitive and behavioral and all these areas get pretty tricky as well...We have been very very lucky since so many skills returned so quickly.

But the thing that still stuns me regarding autism intervention is that I was out there asking educators, pediatricians, therapists and neurologists (at Boston Childrens and elsewhere)...what can I do about my son's behavioral issues? What is going on? This was huge for our family even in the midst of the other medical issues. Even with all of the emphasis on early intervention not one professional said - this may be autism and if it is early intervention is key and so lets get going and by the way intensive ABA is the only treatment with research demonstrating its effectiveness. I still am not sure how I can explain that I wasn't on top of this except that my older son also has neuro motor issues so I was focused on advocating for appropriate speech and PT services (* didn't walk until after age 3). I think people imagine that when you have an autism diagnosis someone sits you down and says OK here is what you need to do now...but instead it is go home with your child who is scratching himself and pulling his hair out and won't eat dinner and in your spare time research every intervention and talk to other moms to figure out the best course of action and go to workshops to figure out how to get the schools to do what you need them to do etc...

So here we are...I send my best wishes across time to you and your family.  Thank you again for your resources. I don't usually send these kind of long emails - but most of my conversations lately have been with two very interesting little guys (both under 7!)

With appreciation,


Hi Richard,
 My name is * and I have 2 asperger boys.  My oldest son is currently going to school out of district and now his school is fighting me to bring him back.  He is doing so well.  Honor roll, student government, he has made friends and he now holds his head high and looks forward to going to school every morning.  Of course there a days where I can't get him out of the house but for the most part my son has improved so much over the last two years.  I have his doctor behind me but the school doesn't care they just need to save money and bringing my son back to district will do that for them.  I am a single mom who has very very little funds and can't afford an attorney for this court case.  I don't know where to turn.  The school knows that I have limited funds and are hoping I just drop this because I don't have the financial means to pursue.  There was another child that goes to my sons school from the same district and they tried to bring him back but his father is married to an attorney and it didn't even make it to mediation.  Please if you have any information that might help me.  Time is running out my court date was just given to me today and it is the *. Thank you in advance for any help you can give me.


Sincerely


I have enjoyed reading your website!  It is quite thorough.  As a new practitioner (BCBA) I am glad for your clear examples, of how to explain the concepts to laypersons.


I wish to thank you for your extensively, informative website.  I have added your website to my list of links on my website as a source of information for parents.  When I perused your site initially several weeks ago, I was very impressed.  I also am grateful for not having to "reinvent" the wheel, just direct parents to your website for all the wonderful information you have collected.  Parents can also read about your experiences and relate to your frustrations.  I am so thankful for such devoted and loving care as you have displayed.
 
Sincerely, 

Note: I did not write the commentary on Son-Rise included in rsaffran.tripod.com/sonrise.html

I read your post on Son-Rise with great interest and you are correct with most of your observations.  I had the unique experience of working there in a senior role about 5 years ago and came away concerned with the marketing aspects overwhelming any results oriented results.  Interesting place and very organized in a cult like environment.  The enire family has a role in keeping things going and Bears is very clever in the packaging.  It is unfortunate how many families are mislead and deceived.


Hi Richard, I have a 2yr old who is diagnosed as PDD NOS. I am trying to find out or get in touch with families in TX who have been successful in getting ABA services through ECI. The option that ECI gave us is that their ABA consultant would train the ECI team and provide us with a program they call “modified ABA”. I am not comfortable going with this approach because that would not be a true ABA program. Why are the services in Texas so different from other states like NJ and MA though these are covered under IDEA Part c?
 
Any information regarding this would be very helpful.
 
Thanks!



Dear Richard and Family,

I read your letter with sadness, and realised that this is almost the 
same story we have experienced with my little boy, now 6, from the 
*, CT school district.

It is always a fight and a loss of precious time to secure a full 30 
hour week of ABA therapy from the schools, and we have had to fund it 
ourselves.

How come still over so many years, this story goes on and on?

What can we do to change the laws, and have school districts be 
forced by law to stop this?

Yours sincerely,


... More importantly, though, I wanted to thank you for putting together your website. I have been referring parents, colleagues, and graduate students to it for years. It is by far the most comprehensive ABA resource I have seen, and the amount of time, energy, and skillful organization you have put into it is nothing short of amazing. I can only imagine how many people it has placed on the path to finding effective treatment for individuals with autism.


I am a parent consultant/advocate on Boston's North Shore. I just read your letter in a quest to learn more about ABA in general as I'm working with two families with extremely similar situations to yours.
 
Bravo to you for all of the (very difficult) endeavors on behalf of Alexander. Bravo again and good luck to you and your family.
 
Very sincerely,


Hello,
 I had a experience today that left me so sick to the stomach and brought me to tears and I would like to asked you a question. I was in classroom of pre-k autistic children today with 5 other helpers. This had been my first time with these children. As a short time had passed I watched children being ( what I would consider) very mistreated. One child was slightly smacked in the face, screamed at, His shirt was twisted from behind so tightly that it became tight around his throat and he tried to get it released children were drug over a high curb in a wagon and the rear child grabbed at his back as if the ride had hurt him. Another child was picked up under the arms of a adult from the bus while holding tightly to another child and by the time this adult reached the door of class with this child the adult arm was around the childs throat and the childs shirt around the neck. I saw breakfast tossed to a child, a child screamed at for accidently spilling a drink. I could go on....I was due to be in the class to help for one hr but after 30 minutes I could take no more. I told one of the staff I had to leave and went strait to the administration. Needless to say quite upset at how I saw these children being treated by the staff. I asked what the policy was on how to physically handle these children and after describing what I saw, they filed a report. I wonder....How long this had been going on. This was there last day of school and from what I gathered from the meeting no other complaints had been made. I was torn in leaving these children for the remainder of time with these adults and leaving to complain. I felt outraged at the adults and so wanted to say something but felt it best to keep my composure and go complain. As I walked out the door the tears flowed and I nearly threw up. How do I find information on the proper way these children are to be treated? As far as I am concerned I witnessed abuse today.
 
Thank you


THANK YOU!! We've done the advocate & attorney thing in the past and like you, had to provide services out of pocket to prove our case. Done it twice. Once in the San Francisco Bay Area to get a 1:1 aide and ABA at home took two years to settle. Then we moved to Orange County southern California and had to fight again to retain services even though by law you are suppose to get a "stay put" of services if you stay in the state and move. Took approximately another two years to fight the new school district. While all this time you are losing money and your child is in limbo. But I'm sure you can relate to that. We finally decided to take her out and pay privately for a promising special needs Non-NPA private school. But they need an aide for her and the extra $80,000 is a bit of a stretch. So you are correct, it's back to playing hardball with the district and getting an advocate or lawyer to get a 1:1 for my daughter. But it will be a 1:1 from an outside agency not some high school flunky who doesn't have a clue from the district. So as you see, doesn't matter where you live in the United states, we are all in the same boat. Although, I did hear there is an excellent boarding school in Boston.

Thanks for hearing me out. But let me tell you it is really nice to be out of the district. So much stress was lifted off my back and now I must face it again!


Dear Mr. Saffran,

I sincerely appreciate your web site as an important referral source for families with children with autism.  As a mother of a child who was diagnosed with autism in 2003, I wish I had more resources like yours.  I am writing to you because my son attended one of the schools listed on your site as an ABA school.  He attended this school for 3 1/2 years.  My concern is that the school is claiming to be an ABA school, and to be honest I did not know what that really meant until this past year.  However, we never received data collection or any analysis of his behavior in those 31/2 years, and I am concerned that this is a gross misrepresentation of what the school really is.  Due to the lack of competition, most parents are unaware of what true ABA is in this area, so we were grateful to have any school that specialized in educating children with autism of course.  With that said, this does not give anyone the right to misrepresent their program.

This has driven me toward the goal of starting a new school in the future, so that true ABA can be offered.  I hope you will understand my concerns.  I find it extremely frustrating that parents of children with autism are taken advantage of in so many ways.  Please feel free to contact me if you have any questions.


Hey there, I came across your link doing a google search and thought your page was absolutely fantastic
If you have anything out there in addition, or any other suggestions on sites or background materials please let us know.  
 
Looks like this is your main page to me since it was last updated in December however, but just wanted to confirm it
 
We have gone through many of the same problems, processes etc. with our own daughter *
And your layout is excellent with coming up with the steps and the plan and having the reference material ready when needed.
 
* is 6 now and is a high-functioning autistic, best diagnosis I think is PDD 
She was severely disabled socially and verbally at age 2.5 to 3, but with Behavior Therapy has come a long way 
 
She managed to graduate Kindergarten OK, but it looks like we might not get her through first grade and we are looking for any help, advice on how to deal with the school systems on this issue.
We live in *, FL and at this point aren’t set up with anything specific for the autistic yet.
 
We still continue Behavior Therapy with QuestKids in Orlando FL (great organization if anybody asks about it)
On standardized tests she will test on the low normal side or to about a year behind, depending on the test used.
 
We have started the 504 and will likely push for an IEP if she continues to appear to fail first grade
We also will have to fight to keep her in her current school, which is an Arts magnet school, so if she is held back she would go to a local district school with which we don’t think will have appropriate programs for her.
 
Also, being autisitic the whole transition deal will be a problem for her and she is hugely motivated by making music, so an arts school makes sense for her.
 
We are also probably going to have to consider private school as well, so if you have any suggestion on private schools in central florida area that work well with PDD kids, let me know
 
However, obviously I would rather first go with doing everything to try and get the public school system help us out with her as suggested by your fabulous page
 
Thanks again, it was a pleasure to come across this.


Dear Richard,
 
I saw your amazing site. I am also a firm believer in ABA. I am wondering how I can add my two cents.
 
We have an autism success story. Actually, we have two sons who were autistic. Both are doing well, but the older one is doing spectacularly well. He was born in 1971 when there were few resources. I was an elementary school teacher but I quit my job to concentrate on him. I developed my own behavior modification program. I also tried every single program, therapy and diet that I heard about. I had him tested at Stanford and other places in the San Francisco Bay area. I put him in two nursery schools, one diagnostic and one Montessori-type.  He was in special classrooms for most of his school career.  He graduated from high school and earned a B. A. from Utah State. He went on to earn a Master's Degree in Computer Science and math from Utah State. He is employed, earns a high salary, owns a home, has been married since 1996 and is a great father to three children.
 
Our second son has not done as well but he is employed, in college, has been married since 2000, and also is a great father to three children. However, he is not entirely self-supporting and has some difficulty getting along in a work situation.
 
I am thinking of starting a web site on How I Did It. There seem to be plenty of those already. What do you think?


Dear Mr. Saffran
 
I have been in your web site afew times and it has been very helpfull to us.
 
We have 5 years old daugther with autism with the same sad story of many parents. Not diagnosed until age 3 despite 3 visit for language delay to our pediatrician office. she turned 3 in * and we moved to * for job training on *. When she enterned the preschool class in indiana they suspected it but did not tell us. We were dismissed from the school and refered to childrens hospital.  We went to our school district for help mean while and she was placed in especial education class *. There are no autism specific programs in public school in *. At this point we still didn't know what the diagnosis was as if no one wanted to beak the news! Finally we got into the * hospital  autism clinic * and she was diagnosed at age 3-1/2.
 
It took 3 months before the final evaluation was typed and send to us and the school. We were told the diagnosis is hopless and we should join a support group and get her an application for medi-cal . No mention of ABA or any intervention.
 
The good people of school district took the recommendations to their heart and did nothing for her. ( I hope there is big deep hole for such people in hell). she spent the year in special ed class with 5 other children with diffrent but much more sever disabilities. she made no progress by age 4.  I must say she had no physical disability , or aggressive behavior, or dysmorphic features.  potty trained on time.  by the grace of god I met a friend that summer who openly talked about his experience with autism ( his son) and gave us hope and perspective. That night I discovered your web site and from there I read first cathrine morris book, lovass paper, found ABA recourses in Indianapolis.
 
We finally found aBCBA consultant, and strated getting trained, she then brought 3 independent tutors and over 9 months my dauther not only became verbal she amazed us by her ability to read and write. 
 
We moved back to * as my 2 year training was over and returned to my job.
 
We have been since mid June na dhave started to look for ABA.
 
Here is the situation. There are many VENDORS, who sell their ABA services to * regional , a goveronment program that founds early intervention. All have extremely long waiting list I have been call every week to them all. many exclude their services to kid younger than 3. A practice that I have huge objection too. No one is interested in private fundings. essentially no way aroung the system.
 
Our district is called the evil empire by many parents. I have placed an add to the local ABA training program in * state university, job posting on the Craig's list on the web but no success. in the 3 1/2 months, my daughter has not had ABA except for what my husband and I struggle to teach him. We are desparately looking for ABA therapist / consultant in this area.  I have been to * we are waiting. All the vendor are short handed. school district dose not want to offer an trained aid. Any where I turn I hit the wall.
 
Do you know of of any ABA resource that could be privately hired in this area while waiting? I feel like a fish on the frying pan, especially that all of these delay affecting her school placement. although academically she is advanced she had clear deficite in social cues.
 
Never in my life I felt so trapped and helpless.


Dear Mr. Saffran,

Thank you for your website - it is amazing. My son (now 2 /12) has been diagnsoed with autism. I am soooo overwhemled with the information out there and cannot find a physician to help me form the best plan for him. Im sure I could spend days reading through your website, but with 3 small children, my time is quite limited. Can you help? I live in *, NY.

My goal for him is complete "recovery" or healing. But everyone - parents, schools and research seem to suggest ther way is the best. I think intensive ABA is the way and have enrolled in a local preschool, but am not sure any one hears me saying "Lets do something, NOW!" There seems to be no urgency and prescool just wants me to trust them and see how it goes before we give more 1:1 time. Am I crazy??? and Can you help with anything?

I do appreciate your time and any direction you can offer. Thank you very much.


hi, i have a grandson who is 5yrs old and autistic and
lives in a rural southern illnios town. he goes to a
special ed class and cannot talk read or write. they
thank it is more important for him to learn how to
roll a food cart than to learn how to communciate. i
have been trying for 3yrs to try and help him to no
advail. he lives with my daughter and she doesnt know
where to turn. thanks.


    Dear Mr. Saffran,

    I ran into your web site this morning, and I wanted to take a moment and send along my appreciation for the straight forwardness and helpful
information that you have taken so much time to put together.  It is only because of people like you that * (my husband) and I have been able to
move forward for our son.
    On your site you wrote, "I have received hundreds of messages from parents (mostly Moms) with recently diagnosed children (mostly boys), asking
how to get started - in particular, how to get their school system to write and implement an effective IEP, rather than automatically putting their
child in whatever program happens to be most convenient. I have replied, hundreds of times. If you are one of those parents, I am always happy to
answer any question, but this "form letter" might help you get started."  
 I did indeed find that listing very helpful, and I too am seeking information about how to write and implement an effective IEP, a priority on my list of things to know, as my son will be turning five in September.
    It was the end of 2006 when we first went walking down the road to diagnosis for our son *. His pediatrician, like yours, took a wait and see
approach, referred us to Child Development Services, here in Maine. We were told they "were the people to talk to".  At the end of our first screening,
in * 2007, where my son was uncooperative, I asked if * was autistic. The screener told me she could not say yes or no, but that *
certainly had autstic characterisitcs.  It was that day I knew inside, though no one had ever said the word autism to me about *.
Over the next six months, we saw a child psychologist - a wonderful man, who was very kind to *. I sing his praises as throughout
this experience I found him to be forthcoming, quick to schedule and finish his reports, and straight forward, which does not seem to be the way of
things these days. Next was a multidisciplinary team evaluation. And after six months we had a diagnosis. Like you said : We were offered no training on how to deal with the enormous challenges in raising an autistic child. At this point we had confidence in the TEAM's expertise and accepted their recommendations without question. We fall into this category too. By the time we received our reports, I had read every book and watched every video available in four libraries locally, as well as skimmed through hundreds of articles and web pages and oh- isn't the internet nifty?  
And while this research is helpful in the day to day with *, as well as seeing the emotion and distress that I had felt over the years being put into words by other people, I found that I was far away from being able to effectively develop a plan for our son within the education department.  I registered * with the school for Kindegarden which begins in the fall  2007. The school set up a "screening" for * the Friday before our IEP. We have an older son who attends this school, but truly  I was shocked by our experience with this "screening". The screeners were very impatient with *, and at one point the "special education" teacher was less-than-gently pulling my son by the arm across the room.  I want to give the benefit of the doubt here, and say that I am sure they were not being mean or abrupt purposely, and that perhaps it was just a very off day, but by the time we left, my husband and I were very distressed. Until this point I thought that the folks who claim to be "special education" and "have been doing this for ten years" would be well versed in people like my son.  Ha Ha .  I'm not saying by any means that all are bad, but my first impression is not a good one. I went to the local parent awareness center again and checked out all the material that was available regarding IEP's and slept very little that weekend. Sadly I had spent a great deal of time trying to learn how to interact with my son, when i should have been learning how to be a lawyer.  As you mentioned on your site, when you are a parent of a disabled child there is an awful lot to do.
    The following Monday i attended an IEP that will be effective until *, as * will turn five. Reports in hand, with helpful "suggestions and reccomendations" as well as my Parental Input , we developed the IEP.  A terribly ineffective document sadly, as the plan was for * to attend a preschool program for the summer, with speech and occupational therapy included there-in. An ineffective document that called for my son to attend one of five schools in the state, none of which had space available and they knew it.  A lesson well learned - I have to say. Never again will I agree to an IEP that calls for my son to be somewhere with no space.
    It has been a month and a half since my very first IEp meeting. I have another looming ahead on *, 2007. A lawyer would be a blessing, but is not an option.   I am a little more well read these days, though still struggling to write an education plan for *. I had the occasion to call an Autism specialist. She was a very kind individual, though once again unable to make specific reccomendations.  I have joined some of the less expensive organizations, and I do find some of their articles very interesting. I joined the local parents awareness place, who sadly are desperately in need of updated library materials. (on my long term to-do list that one there) I read and i research after every one goes to bed. I try to give the readers digest condensed version to my dear husband. I called the local non-profit case management place for Autism,PDD, and Aspergers' who will begin case management after *'s state medical Katie Beckett is approved . Funny isn't it that no one we talked to told us to apply for that, it was a parent like you . And we can't get him into therapy at all until it is approved. Doh.   (not sure what happens if it isn't approved for whatever reason, but okay - no worries there....decision was due yesterday - shouldn't be too much longer.....) In the mean time, while I've been waiting for his state medical to be approved I found a speech therapist, an OT clinic locally that have worked within the schools that I think would work well for our son.  I've organized all the files, made a phone log, and that sort of thing. I'm working with * as best I can with my limited knowledge, and he's even made some progress with my rudimentary , unrefined , home version of my interpretations of what I've read and seen about autism. He has come a long way since last December though  I fear that if we can't develop a good master plan, a good IEP, he will not reach his potential.  All along I have been saying to my husband, "what happens to people that don't know about all this stuff, " "My goodness what happens to people who aren't real  smart? "
    And i continue to run into walls that i know i will someday move.
So now that I have gone on and on, here are my questions,
    - There are several vital books that are absolutely necessary reference material ( you mention them too  from  Wrightslaw ). I borrow from lending libraries, which is nice, but takes forever, i can't write in them, the ones i want are not available, and I am constantly finding that I need that page from the one I just returned. Our local libraries don't have them, (also on my long term to-do list - how to get our libraries to buy these books for the next person who needs them)  Is there any where to get ahold of  these books less expensively? I've looked locally, used, asked  my friend at the college on the other end of the country, but still coming up with no books.   I know that over the years I will have to find the money for them, but that will have to be over the long term too.
 
    -What does one do in a state with only five programs total that are geared for children like my son? It seems as though the school district is leaning towards  the * in *, Maine  which is  first off a very small enrollment, i'm sure there is no space , and second two + hours away from home on a good day with no snow.  We're talking spending a minimum of four to five hours per day driving. (not to mention winter driving, oh-my)  This truly is not an option for us, my husband and I get by, but with one income, three kids, there are no nice pretty new cars in our future. We drive old , paid in cash, and thankful we've got them,  vehicles. So how would you compell this district to do what's needed for our son? He needs one to one ABA , discrete trial based teaching. The diagnosing psychologist said "my preference would be" for this. However no one said xxx amount of hours per week. And from our first interaction with them, I think it will be an uphill battle.  
    I know that's a pretty broad question, so any helpul advice you can add would be appreciated.  I am trying to sort through and develop a game plan.   It is so daunting to try to figure out what he needs and how to ask for it, because we are unable to get the specialists to be specific about what he needs.  I know you mentioned getting an independent evaluation done for specifics, but our insurance is based on referrals from the primary care provider. She referred us to Child devlopment services , who helped us get the testing done, so that's the end of that for us. Can't go out of network, and have already done the innetwork thing. Still no specific guidelines. I have to figure it out and very very quickly.
 


I just discovered your website today.  We are having great difficulty
funding our son's ABA program.  We started at 2 working with the local
school district and fougt out decieving but we thought decient IEP.  The
verbal agreement or lie they implied was to have us pay for the school
staffs training for the ABA program if they would pay for and provid the
staff to do it.  We used LIFE (lovaas).  They had written in  the IEP that
they would attend the training, and use ABA data sheets, but because they
did not word for word spell out that they would use the methods and
techniques from the training they did not or did them very incorrectly.
Although all of the goals would have been met by the ABA program. We then
started litigation.  But withdrew with open option to resume, because we ran
out of money.  We continued the program privately for 1 year at a much lower
# of hours than reccomend because of our limited funds, but with much
progress.  Then we scrimpted along with even less funds and hours untill
finally having to stop because of lack of money.  Our state provides nothing
we have tried all of the familar NPO's for help but with no luck.  I am not
sure what to do the last case our state lasted for a long time and the
school spent 3x in the battle to deny services than what the parents were
asking for.  They finally settled out of court because the people found out
how much was being wasted on the litigation.  Michigan is in a bad financila
state and so I believe they would again fight tooth and nail to avoid
setting a preceedt for ABA.  All said I don't understand how this can happen
becaue every piece of information on Autism show ABA is the best with the
most research and best statistics.
Any suggestions you could give whould be of great help.  I feel so guily and
sad for my son as I watch time wasted for him.  I know his pregress whould
have been so much faster and significant is he had the minimum 30hrs
reccomended.  And know he has known.  We one other child and one due in
December and so I cannot do but a tiny fraction of thearpy.  And I think my
remorse, tiredness, and frustration distracts his bennefit so now I just try
to engage him as much as possible everyday with play and books.  It just
seems so daunting and at times hopeless..
Thank you from myself and my family


Hello,
My name is * *, my son was diagnosed with autism in Nov. 2006 at 23 months old.  I just wanted to thank you for creating such a useful and informative resource for the families of children who are dealing with autism/PDD.  My son started early intervention in Sept. 2006, at first with minimal services, then later with the help of your research and diagnostic reports from 2 major childrens hospitals he was approved for more services (he is still only at about 12-14 hrs/week, but will be increasing as he can tolerate it). My son is now 2.5 and has made great improvements over the last 2 months, he now makes much better eye contact, responds to his name 90% of the time, has decreased toe walking, follows most 1 step directions, and knows his alphabet, colors, shapes, and many animals.  He is still not using speech to communicate, but can say about 30 words and understands more than 50 words.  He will be transitioning to the local school district soon and we will be using your site as we try and push to receive an appropriate amount of services for my son.  Thanks again for your hard work...it is greatly appreciated!  I hope all is well with you and your family.

Regards,


Richard:

Reading the writings of a parent who went to the Option Institute and from her letter  felt "burned" by the whole deal, it did my sceptical heart some good. Actually, the course they offer "Optimal Self-Trust" is one I do not need to attend because I already have it.

Going up there this past May, the parent "Start-Up" program only made me and some other parents more frustrated as we didn't get any information on our family member who was "on the spectrum" of Autism but did not have it. Of course, if I was willing to spend another $300-400 for a "consultation" or a "dialogue" then I might have had a question or two answered. What about the $3,000 I already spend to attend? Oops, don't be judgemental, just "chose to be happy" and then the money won't bother me anymore?

I think it was downright aweful the amount of money they are expecting families
that are already mentally, emotionally, and yes, financially strapped to come up with this kind of cash. Seeing how they are very "happy" about their helpful section in their workbook on "fundraising" that they don't anticipate changing any prices in the future. With the thousands of hurting families, you would think that the main priority would be "helping" as many families as humanly possible at a sacrifice even they could live with. I'm sure they're living just fine. Oops, I "judged" again.

Also, why in the world don't they "taught" their progress reports? I had some red flags go up before I signed up at the very last minute for the workshop when I asked all my sons school/career workers, case managers and state known doctor if they ever heard of this place or this "Option Method" all to no avail.

On our Friday session at the end of the week, someone came in to talk to us about "fundraising" only to have him ask us if we felt led to give a donation to the Institute to help with scholarships to other families. How about, "we used up almost every last cent we had for me to get here". Then, you want me to come back with my spouse and spend another easy $4k and then the actual help for my son will cost us an easy $4-5 to have an outreach person come for 2 days.
My new name for the Option Institute should be Fleecing Options for Autistic
Families.

That's all for now.


Note: I did not write the commentary on Son-Rise included in rsaffran.tripod.com/sonrise.html

To Richard:

I read your comments on the Son-Rise programs.  I do not agree with a lot of what you wrote.  I
attended a Son-Rise Start-Up and Advanced program for my son and I didn't pay the institute a
dime for all the information they gave me.  Most of the parents and professionals that attend
the programs are fully aware of all the other programs out there for children with Autism.  When
my son was diagnosed with Autism, I researched every program out there and dealt with the crappy
public school system full of people who only care about their job security and not my child.

The people at Son-Rise helped me accept my child the way he is.  But accepting him doesn't mean
that I do nothing.  I can take action to help my child because I know my child the best.  It is
not about just being happy about everything, its about putting your love and hopes for your
child into action.  I do have to say that I do run my own version of the Son-Rise program.  I do
not lock the playroom door.  My son loves to go into his playroom.  

Not everyone that learns the Son-Rise program run the program correctly.  You are not suppose to
encourage or join in with any type of crying or screaming. You are suppose to teach that crying
and screaming is not an effective way of communcating but to teach language instead.

Maybe you should attend a Start-Up program at the institute so you have a first hand account of
what the program is about rather than second hand info.

Loving MY child 


Dear father,
thanks to your wonderful website we could inform ourselves and get all the tools we need to help our 18 month old son, who was diagnosed with autism at that age. He is 3 now and is progressing so well, that his Dr. who is Dr. Bryna Siegel is thinking about removing his diagnosis by kindergarten. Thanks to you and all the information you shared on the internet, we could get the most appropriate help for our son. I cannot tell you how many times I have come back to it and read it. ABA and intensive speech therapy saved our son. I just wanted to let you know, what a difference you made for our family.

Thanks


Hello Mr. Saffran,
 
I am so intimately familiar with all of what you have experienced in a multidimensional way.
 
I am a CT certified Special Ed Teacher, who has lived through the system and first handily observed its failure to the students on iep's and the beginning teachers who need support to help these students.  No one to go to to ask, "Now what?"  Because of this, I am exploring other career options, but have no clue what to do with two post graduate degrees in Education?
 
I do know that I cannot teach in this environment of "not spending anymore money on this small population of kids", when I asked my principal to give me another aid, because the one I had was not helping.  I was ordered to make it work with her, no I cannot have a new one or additional one.  My question is, how can I work with this person who needs more support than the students?  Daily having to explain to her what was needed and then several times during the day, reinforcing the same requests.  She could not use the copy machine with out help and just refused to use the computer, because "this is too complicate, just forget it".  Unable to go pick up needed items from other teachers or the mail box.  She brought another teachers pictures and paycheck back to me, when I asked her to go get my mail.  When the principal caught me in the hall, she wanted to know why I was not in my room.  I told her of the para problem and said I needed to return the other teachers mail before it was missed, as I had this other teachers pay check in my hand.  I was told I was not doing my job.  I've experienced the failure of the school to even explain what it is you are expected to do.  They just hire you, stick you in a room and say figure it out.  When you have a problem, they blame you and make up stories to back them selves up.  Say things like "step up to the plate" and not explain what it is they want from you.  You want to help the kids but do not know how or where to find the tools you need and there is no one available to ask for help.  You do not get a planning period, no lunch time and then get into trouble for leaving the para in the room with the students , so that you can visit the bathroom.  The schools do not want to help, but do not say so, outside of the building.  Then there are the mainstream teachers who resent the SpEd students placed into their class.  "This child is Special Ed, if they get a C, I've done my job."  Is there a reason a SpEd cannot earn an A?
 
Then there is a different school system, whom when presented with a developmentally delayed four year old non verbal little girl, only give her a half hour a week SL in a fifteen hour program, in a room with mentally retarded and physically challenged, like CP and MD.  The school put her in the program, as specified on their web site as a placement for the un educateble.  It took a lot of work and time for her parent to get her a diagnosis in a short period of time and provide her with additional SL, utilizing health care insurance.  She has been recently diagnosed with Autism.  The amount of time from discovering the problem, to getting and iep, with a special placement in a regional school that specifically offers ABA took 2 years.  But the parent did all the work, not the school.  They were not very helpful, until the diagnosis came in.  Now, they have to follow the law, so things are moving forward.
 
Meanwhile, this same child knows her alphabet and can identify each of the letters and make their sound.  When you hold her hand, she will write and guide the pencil and make the upper case letters of the alphabet.  The MD, who diagnosed her, found this skill exceptional and was surprised by it, as the little girl would not copy a square or an x.  She can count up to 20 and sequence numbers up to 20 in order.  At this time she does not appear to be MR.  The MD noted she has emerging skills in the area of one-on-one interaction using eye contact.  So there appears to be a lot of hope for this little lady.
 
As her mother, I am so relieved to see there is hope for my little lady.  She does have a chance to grow up to be independent.  She is one of the sweetest little girls I have ever met.  She is a lover and a hugger.  She is also beautiful with big brown eyes and thick light brown curly hair framing a angelic little face.  Everyone who has worked with her has commented on her appearance and general character.  She is a pretty and nice little child who does not want to include others in her world.
 
I do notice that she seems to have very loose bowel movements, which the school keeps calling diarrhea.  She also seems to have these at school on a schedule.  Whenever the phone rings at 1:30, we know it is the school calling about her business and that she is being sent home again.  Is there anything we can do to help her with this issue and will she ever be able to use the toilet?  How do we go about getting her to go?  She is our fourth child, and we are so tired of dealing with business, after almost eleven years, can we be blamed?
 
Thank you for listening,


Dear Mr. Saffran,

        Thank you very much for your wonderful website. My daughter will graduate from college in May, and it has been a long journey since she was diagnosed in 1987. We were incredibly lucky to stumble across ABA so long ago and we were able to have her worked with by the students at the graduate school I went to, as at the time there were few children with autism. (We were actually told she was simply retarded for several years before finally being given the autism diagnosis).

        The secret that must be let out is that ABA works!! She has a job, friends, a life, and every hope for a future that is at least as happy and fulfilling as her sisters and brothers do. I have since become a professional BCBA and work in this field. I know that not every child will achieve her level of success but many many of the children I and my colleagues work with do.

        If I could provide one piece of advice to your readers it would be this - keep learning and asking. What qualifications do your therapy programs have? What are the qualifications of the SUPERVISORS both in home and school programs - I see far too much emphasis placed on the tutor level when the real issue is the supervision.  How much (in hours per month actually WITH the child by a person with at least a Master’s degree) and how well qualified is the SUPERVISION your child's program gets? It takes a very qualified person to write the programs per research based principles and to change them to fit the child - a tutor can only do what someone else has taught them or they are "winging it"  - this is NOT an acceptable solution. Your only other option is a one size fits all program - which is great if your child responds to it. Some children do not respond to that usual list of drills and need an ABA, DTT approach that perhaps uses a visual cue component aimed at vocal speech, or a pitch prompting speech for those kids with the uncanny musical ability to bridge the gap between visual and auditory processing to get to vocal speech - a tutor will not have the background to do that kind of programming. Too many programs are designed around what the tutors have pictures of! Even the notion of progressing a child along the domains so that each drill builds on the skill taught in the last one to avoid the "maintenance Fridays" that build up while waiting for a child to complete some part of a rigidly defined level is NOT something that Must be done - it is done because the tutor can be rote taught to do it. There are even more radical notion such as tying the reinforcer to the data (and even to use data and reinforcers for skills to learn at school!). Ask your school or provider - how many children have they served that have achieved recovery status? (On the other hand do they "drop" those kids that are not on a "fast-track" or do they recognize that the young kids who learn more slowly or in different way are still worth the effort of intensive therapy). (Financially this also makes sense - a child who is well behaved, and can go to the toilet, dress himself, eat presentably, communicate basic wants and needs, is much less likely to end up in a very expensive institution. ) FAR too much time and efforts is spent justifying the costs of ABA and this is an horrific burden dumped on the families who are already bearing the unthinkable pressures of living with a child with autism.

        In our area there are funding sources from some local school districts and the local Regional Center for young children with autism. While this is not an open checkbook it is a much better situation than is found in many other areas. There are many providers and in fact there is some level of competition - I believe those of us who provide quality programs become recognized and sought out - certainly we have never had to search for clients.

        I an terrified by the statistics and by the prospect of grandchildren - no one even tries to give the odds that my daughter will be able to have a child without autism, to say nothing of her siblings. We cannot continue to keep our heads in the sand.

        Four years ago I cried when she graduated (with honors!) from high school. I am not sure how well I will be able to maintain my composure when she graduates from college. She is interviewing for “real” jobs now also and that is something I was told she would never do as well. (I remember just hoping she would be potty trained someday). She has held entry level jobs at Target and the like and did well there – that she is able to aim higher is another miracle.

        So to all you new parents out there - there is hope. Even if your child does not recover completely there is reason to believe they can learn to maximize their potential. We owe that level (not just "appropriate") to all our children, not just those with special needs.

        Thank you,


Richard,
My name is * and I am interested in learning ABA so that I can volunteer to help families with an autistic child.  I do not have an autistic child myself but have been a preschool teacher who recognized autism in time to get early intervention for a little girl in our program.  She is an absolute success story.

When I see how wonderfully she did, I am inspired to try to help others.  (The preschool also had another child who's parents refused to believe there was a problem and so was not a success story.)  I live in Fort Myers, Florida and would like to know if you know of any programs in my area.

Thank you very much.


Note: I did not write the commentary on Son-Rise included in rsaffran.tripod.com/sonrise.html

I've just read your long posting on the son-rise program. Many of the good things you talk about I learnt in doing the son-rise program...i don't think they nicked it from you however...as they were writing the same sort of thing when raun was a little boy...I think they have the same ideas that you do...I am very surprised that you think they are worthy of critism and reproach...their marketing is the sign of enterprise and desire to reach out and spread the good news..not money sucking or callous...

Because your attitude is distrustful, no wonder they don't want to talk to you...its a real shame because I think you are all on the same wavelength in terms of what helps autistic children to develop. I helped my child using son-rise and aba, (all free approaches with charitable funding) and I found it totally complementary, so please don't spread distrust when it all helps.

Whether my daughter is proud of any lables that might be heaped on her head when she is older is up to her...I just needed to help her develop so that when she grows up she has the choice...and parents aren't around forever...

* (Son-Rise and ABA Mom)


hi there,

i am the mom to * kids with autism....my life is chaos to say the least...i have filed due process against our school district and ended up settling...we just filed arbitration last week for this same matter...

my youngest (3yrs) just entered the school district...* has gotten ABA for the past 18 months under the direction of a highly credentialed/knowledgeable BCBA...the school district has employed him for the above child per her settlement agreement...

the school district does not believe in ABA (specifically discrete trial)...so they now are letting go of the the BCBA we had and hiring another...only problem, this new one does not believe in DT...what leg do i have to stand on? 

we have an advocate that is phenomenal...but i'd like to know ur opinion...the school district refuses to put "ABA" on their ieps...but when issues arise as such, then they claim that aba isn't just DT, which they are correct, yet the truly "know" that is what we mean when we say "aba"...now it will come down to semantics, i am afraid....

i have spent well over $40,000 on just one child trying to get the school district to step up and give her what she needs...now i'm having to do it on another child...i am BROKE...and my energy and fight is dwindling...raising * kids with autism in itself is a challenge...fighting the school district on top is depleting me...they are * yrs...they are my life...my breath...i will continue to fight, but could sure use some input from a parent "that gets it"....

all of my children got early intervention, intensively, until age 3 when they naturally became part of the school district...they all received discrete trial...i have all of their programs...have turned them all over to school...they have attempted to provide an ABA/DT program but have severely fell short...it is not a BCBA problem/lack of ability, but merely an implementation problem on their part...

can u offer a suggestion or two? i want my children to continue to get their discrete trial aba...my BCBA says they still need it...each child a different number of hours based on their needs and level of ability...do i have a leg to stand on when the school district is letting go of this BCBA and bringing onboard this new BCBA? the replaced BCBA travels * hrs to get here..so school district is claiming they want someone "more local who can come more frequently"....that's great...but who they are hiring is a "nut job"...so she has the 4 letters behind her name...as u well know, that doesn't mean "good or quality aba"....i have proof my children learn thru discrete trial...i have all their past programs...what it all boils down to is poor implementation at the school level...

i know i could up and move...but after putting out the money i have, i'd rather continue the fight til the end...i won't give up...

thank u kindly for taking the time to read this...


Nearly twenty years after the publication of the first study showing the efficacy of behavioral intervention, most young children with autism are still given inadequate or ineffective therapy.

Hello. My son was diagnosed with autism August 1st at Vanderbuilt Children's Hospital in Tennessee. I was looking for a school for him in tennesee and I can't seem to find one. I am in hopes that there is one here. He will be 4 in October and he cannot talk. He goes to speech, occupation and physical therapies twice a week. He has been going through these for 2 years and it just now starting to make a difference. He has been evaluated to be the equivilent of 15 months. I don't know how else to help him. If you could share some ideas with me I would very much appreciate it. I have been looking for materials on how to help him and how to cope with the stress for myself. Thank-you for your time.


Richard,

I have looked over your site briefly and would like to get more information from you. My name is * and I live in East Texas near *. My son has autism and has been out of school for a year due to severe behavior problems - the school literally told me to come and pick him up and when we were able to get his behavior under control we could bring him back. Through all this we have discovered ABA and Verbal Behavior. The verbal behavior has changed our lives - it has literally saved my son's life. I am not in that panic state anymore where I not only spend my every waking moment in fear that my child will be sent to a residential home at the age of 10 but I was having nightmares about it too. There was no peace for me, my family, or my poor son. Now only 4 months into intensive therapy I have a happy little boy who I can take out to the grocery store, out to eat, over to my families homes etc. I wanted to share this with anyone and everyone that would listen or possibly benefit. ...


For obvious reasons, I mostly hear just the bad news - problems, problems, problems. Here is a letter from a parent who has been fortunate to live in a supportive, capable (and adequately funded!) school system.

Those of you who have worked with our family know that we usually send an end-of-the-year letter to everyone. Some of you will be hearing from me later, but for now, I thought that I would send this email, since I have the same thing to say to all of you.

For starters: THANKS.

The road with * has been a long one, and some of you have known him for quite some time now. As he is about to leave 8th grade and * to go to the high school, there is a lot to think about. Even if I try to pretend that time has not passed, I can't. * is so tall now, that we can no longer pretend that he is still a little boy.

I want to say thanks for making his education possible. I want to say thanks for doing the right thing, because a lot of people don't. I want to say thanks for working your backsides off, for all the extra hours it has taken for * to even be in your building, let alone learn while he is there. I want to say thanks for believing that he can learn, because again, a lot of people wouldn't. And lastly, thanks for seeing him as a person, as a whole human being, because by some people's definitions, he is not. Thanks for seeing him as we do, and at times, for seeing him as better than we do.

What you cannot know, but maybe can guess at, is what a source of refuge and help and hope that the school is for us. People like us are used to fighting and working very hard to just be, be what other families are, just to do what other families do. Making a life for * is a constant uphill journey. It is the Mt. * trail that never ends. However, in your school, the *, we always knew that we would be ok, from the first minute that we sat down at *'s table in her office, and the entire staff acted as if * would be the most important thing that they would have to deal with for the next three years. I will never forget that.

Not only has * gotten immeasurable gain and growth from his years at *, our family has gotten the support that *'s finest medical minds and our own families have been unable to provide for us. The professionals are just too busy. Our own families, although they care, have been unable to understand, accept and deal with * as we would have wished. (I am sure that this is common.) Once they got beyond the initial stage of assuming that *'s differences were the results of our parenting, their helplessness and confusion as to what it all meant lead them to deny that there even was a problem. Once the reality began to sink in, their powerlessness lead them to ignore it as if it weren't happening. So, we learned to expect nothing from them.

We have always felt that your desire to help and understand and teach * has been a sharing of our burden. It has made all our lives better.

* knows that I occasionally am a lay legal advocate for families in conflict with their sped administration or school districts. Each time I come back from someone else's team meeting, I am so glad that I am here and not there!! It is a very different experience to sit at another district's table. More than once, I have heard a team chairperson tell a parent to "face reality" and lower their hopes and expectations for their child. Needless to say, no one has ever said that to me in *.

I can see that these end-of-year assemblies are bittersweet for everyone. I saw other parents and teachers looking for the tissues. For us, they are a mixed experience. On one hand, we see our child being honored along with the others. We see him being included. On the other hand, at these events, his disabilities stand out strongly by contrast. It is always a shock for me to see that * really is disabled. I guess it never has fully sunk in. For better or worse, I guess I don't really see him as disabled.

Here is to all of you -- all of you special people who don't "get it" either -- who see * as the human being that he is.

Our family will miss all of you who are based at the *.

Thanks, and loads of love, the *s


Thank you so much for this informative site. My husband and I are about to go to our 6 year old son’s IEP meeting, where I never feel prepared enough to overcome the objections to my observations about my son. He has been diagnosed with high functioning PDD “other”, and over time I notice the symptoms going away, but what is increasing is imitating the inappropriate behaviors of the three children with more advanced special needs that they sit him with at a corner table in the room.

Your site is very helpful to sort out what’s what and so I just wanted to say thank you. Thank you Richard Sarffran for taking the time to put all this together.

Sincerely,


Editorial reply: Most of the special education teachers I have known are not only skilled, but enjoy their work, demanding though it is; my experience with my son has made me into an expert on his unique learning style; my son, and many other children, has made important, quality-of-life enhancing progress in recovering from the disability with which he was born; and "my approach" has been helpful to a great number of parents, most of whom feel more empowered to help their children, not less. Keep reading!

Richard,

I reviewed the items on your web site and find them very interesting. I am the father of six children two of which have disabilities. You seem to advocate a combative spirit with the schools. I find this interesting, but I “read” people for a living and know that nothing I say will sway you from what you consider what is right for you. However, I think there are some things you have not considered. First, what does a special education teacher make in salary? It is mostly mandated by each state’s individual guidelines and depends on tenure, state of employment (contract or permanent) and education level. One would hope that the schools find the most qualified person available. That person, most likely, will be paid far below what they could receive at a hospital or nursing facility. Most are in that position because they simply enjoy working with children. What do you think is the reaction that a teacher will have when you press them into one system or another? What reaction do you think the good teachers; who have a choice; will have if you are combative? They will simply leave the field for more pleasant pastures. The same as I would do if I did not enjoy the people I work with. What is left over will be the bad ones. The ones who are not as smart or educated; but willing to follow the methods you describe instead of using the years and years of study. Your experience with your own child does not make you an expert and all of the expert systems out there are created by someone who does not know your child. It seems to be that what we need are people who love children, are experts, and tailor what our children receive to what they need based on who they are.

Ultimately, our children will not recover because there is nothing wrong. They are autistic because that is the way God made them. While they may learn to do small things; nothing will ever make them different people than they are. We should learn to love them as they are and work with the educators rather than “demand” things. I can only imagine how the people you have dealt with; and gave advice to must make their educators feel. If I were an educator, I would not assist your child – I would simply leave the field as so many good ones are doing. The road to hell is paved with good intentions and while I am sure your intentions are the best; ultimately they make people very unhappy and do little to really change our children’s life. I would much rather have an educator who loves my child for who they are; helps them because they want to and takes a personal interest. These thing you cannot demand your way into.

Your approach must cause a lot of unhappiness in the world and while we as parents may feel like we are doing something….. ultimately we are ripping off our own children and those that come after us with disabilities. Richard, I get feeling helpless. I get wanting to take action. I don’t get why we would alienate the one group of people who are there because they want to be just to make ourselves feel like we are doing something. If we wanted to do that… we should do home schooling – then we can ultimately blame ourselves if it doesn’t work instead of the instructor who did our bidding just because we put demands on them and at least keep the good teachers in the system for those with a kinder spirit.


Richard       Thank you so much for your email.

We know about the services available through the Fairfax Public Schools. They have what is called a PAC (Preschool Autism Class). The school jealously guards these slots. They only let kids in who are not responding to the vanilla special needs preschool program.

Our little girl (26 months) doesn't fit the criteria in their opinion because she is responding to the vanilla preschool program (in their opinion). In fact, she is more disciplined since she entered the preschool program and has a few more physical skills than she did two months ago. Where the vanilla preschool program is deficient is in making progress on her verbal skills which are clearly below those of a typical child her age. She has said about 80-90 words to date and not a single one of them was due to school instruction. She got them all from "Papa's School" (IE: me). I have one or two sessions with her every day using games, shape sorters, flash cards, puzzles, songs, books, actual objects and other tools. She has gone from no words, no recognition of her name, no significant cognitive skills 6 months ago to 80-90 words, recognition of who she is and cognitive skills that are above her age group.

What we need to push * into being a typical child is a rigorous home (or office) ABA program. Since the school will fight us in getting that at school, we will have to do it at home. That is where we need help in finding therapists. We have had the home training from a local company, we have tools (cards, data sheets, et al) and will soon receive the funding (we think) through our insurance.

If you can help us with information or leads on experienced therapists, please let me know.

Thanks Richard           God Bless you


I just want to thank you from the bottom of my heart for all you have done to help other parents and their children. Information is power and you have done the most awesome job of pulling it together to benefit others. -- *, mom of 11-yr-old boy with PDD-NOS and a journalist BC (before children)


From a teacher who 'got in trouble' for mentioning to parents, in an IEP meeting, that their child could be evaluated for a possible pervasive developmental disorder:

Dear Richard,

First of all, thank you for sending me such a soothing, and well written letter. Your language in the letter especially with the possible future encounters is profoundly professional. I will always have that indelibly marked in my head and heart.

So my meeting with Ms. * was pleasant and almost enjoyable. She told me how hard she has been working on exit IEP's at which I told her she was doing a great job. She sincerely felt that I would never overstep in a situation again, and that everyone makes mistakes. And she told me if I know the parents there, or if when I walk in to an IEP, and I know them by face, then I should excuse myself, and find another designee. She said she understands that I know a lot of people in the community, having raised children here with all the ripple effects of that ....

I remained calm, nice and politically correct. Phew!

I will always have to remember that I like this job in the * school district, and I can always recommend parents to this organization here called * for support and classes. And by parents going there, if they have concerns or problems, it is there that they might get some further help.

Thank you, again, for hearing me, and responding to me so professionally and heartfelt.


Hi Mr. Saffran,

I have a daughter diagnosed with autism. I am trying to find a school that does ABA and hopefully, affordable, for her. I live in Kansas. The services here are really really bad. I have just oulled her out of the public school after fighting with them for a long time. They do not recognise ABA here. Currently I am homeschooling her. Do you know any public school in any state that provide that for children with autism? Second, do you know any good private school anywhere in the country. We are willing to move to the other corner of the country to get services for our daughter.

Thanks.


Thank you so much for your website! I just happened upon it through a search on webmd regarding pdd-nos...my son was diagnosed with this, having characterists of Asperger Syndrome. Your website has tons of info and I wanted you to know it was very useful! Thanks again. *, KY


Note: I did not write the commentary on Son-Rise included in rsaffran.tripod.com/sonrise.html

I am a parent of a newly diagnosed autistic girl called * and I went to listen to Raun [Kaufmann speak about the Son-Rise programme] on Saturday in Edinburgh. I was all ready to sign up for the course in January and take out a loan to do it but came upon your posting this morning.
Thanks for saving me so much cash...


Dear Sir:

I just wanted to thank you for your website: ABA Resources for Recovery from Autism/PDD/Hyperlexia. My 4 year old son was just diagnosed last week with PDD. He is attending special education classes with our local school district but I wanted to be able to help my child at home as well. When I asked the professionals that diagnosed my son, “What should I be doing?”, they told me to try to keep my son on a regimented schedule and they would call me about parent training class later in the year. I’ve never been a person to wait very patiently. Especially, when it concerns my child. I have spent the last five days researching methods trying to find examples of curriculums that I could start to implement with my son at home with no luck. Until I found your site. Thank you for your consideration to try and help other parents who want to be an active participant in their child’s education. Your time and research is greatly appreciated!!

Best Wishes!!!


Hi, Richard:

Yes, I am beginning to make sense of the whole insane system. The more I read, the more I see that "the system" is a very big failure when it comes to autistic children. It also fails the parents and the families effected. With the number of autism diagnoses being made (daily) it is so amazing that the wheels of change are not turning faster.

ABA therapy is classified by many insurance carriers as "experimental". What rock do these people live under? This is why I have been encouraged to go before a state insurance board. . . it would take 30 seconds to prove that ABA is NOT an experiment, but a proven, effective therapy.

The insurance companies won't cover autism claims because autism is "incurable". However, if he had cancer, asthma, epilepsy, or any number of other "incurable" diseases, you can bet he'd be in treatment, and they would cover the claims.

Autism is also classified under "mental illness" by some insurance carriers. Therefore they can just write blanket policy that says "we don't cover mental illness" and "get rid" of autism claims that way.

What is totally mind boggling is that * has a VERY good chance of recovery. I can see him being a functioning, happy, productive member of society IF he gets the therapy now. Someone actually suggested to me that a determination of whether claims would be paid for him or not may hinge on whether or not he'd experience enough independence and success to become a taxpayer! If he could "give back" via taxes he'd have a better shot!

If he were institutionalized and never recovered, I am told, the insurance company would pay claims (and eventually Medicaid/Medicare) for him to be institutionalized for his entire life costing hundreds of thousands (if not millions) of dollars. How crazy is that?

So, families are left with such limited options‹including filing lawsuits against schools‹ to keep their kids in therapy programs that they cannot afford. The line is crossed between "therapy intervention" and "educational intervention". I have already scratched the surface of Wrightslaw and will dig much deeper into that over the weekend.

Again, I feel blessed, that with the support of family and friends, * has a much better chance or recovery than many other autistic children. He is making progress. Thank God, ABA is working for him. There is no price that is too high to pay to see him progress. But, if you can avoid the financial train wreck that comes along with the therapy, it seems crazy not to try.

Although dollars and time are at a premium, I don't feel I can navigate through all of this without the help of a lawyer. So, I am keeping my fingers crossed that we have found a good one, her name is *, I know she is licensed in Massachusetts as well as *, isn't that where you are from?

Again, Richard, I can't thank you enough.

Your website has helped so much already. By far, the most comprehensive I have ever seen. Oddly enough, as much time as I spent looking for sources, I did not find it on my own. A cousin of *'s dad found it and sent the link. What a great find! I am confident that your work has helped countless other families fighting the same battles.

All the best to you and your family.

...

I was on your site last night AGAIN. I am still putting the puzzle pieces together and I always glean information and perspective from your site!

Here's an update on my nephew, *. * started his day school program at the * School of Autism on September 6. We have seen big improvements already! Anyone who considers ABA experimental needs to see the before and after video of a child only 3 weeks into a program! If that wouldn't convince them, nothing would..

We had an intake meeting with a local lawyer to explore options for funding of *'s therapy. Unfortunately, she sees a battle with the school district as a very long, expensive process and she isn't very enthusiastic about winning. Their school system contends they have a "program" that works. From what I have seen, and from is likely to be in his IEP, it will take them a year to do what ABA could do in month.

Like every other family with autistic children we need the money NOW!! Winning a case (after countless appeals are over) and receiving an award 5-10 years from now isn't going to work. So, his parents are going to apply for an Ohio Autism scholarship which most likely result in a $20K/per year award. They would have to sign a waiver saying that they "accept" his IEP (which will be a piece of crap) and that they won't take legal action against the school. Where is the justice in that? This will, however enable them to lessen the financial blow of their tuition for the next few years. It's a very unfortunate economic reality.

Maybe a Supreme Court Decision on Schaffer v. Weast will make schools more accountable in PROVING that they have a program that is effective. Of course, Brian Schaffer's parents challenged his IEP in 1997. Eight years later the battle goes on.

The silver lining is this. . . I have been diligent about exploring the possibility of a case against their insurance carrier. I still cannot comprehend the fact that a diagnosis of autism can't be covered. ABA therapy is medically NECESSARY. The ping-pong of game of is ABA "therapy" or is it "education" has to stop somewhere.

In Ohio, there are 24,000 new cases a year. I can't image the math on a national level. These kids/families cannot be doing battle one by one with school systems/providers. This crazy every child/family for themselves is RIDICULOUS. Absolutely no disrespect for the lawyers, but the cost of the litigations alone could have paid for countless hours of ABA therapy for children in need.

...

I am realistic that this will be no walk in the park. With what's at stake, I am sure it will be a very long, drawn out battle. But, the potential outcome could be enormous.

If you hear of any cases brought against insurance carriers for ABA therapy costs, please let me know. I am meeting with our State Rep to see if he can shed some light on where autism is categorized with regard to insurability. I got a copy of a book (I found on your website) and it has some great information in it about how policy is written. The author basically says some of the policy written by insurance companies essentially breaks the law. You have to figure it out and prove it. Easier said than done, I bet. Much of what is written is out date with current legislation so cross checking may weed out some important conflicts. "State legislation will always trump insurance policies" is my new mantra!

I am inspired by you, your website and your dedication to educating people about autism. When I start to run out of steam, I go back to your website and ALWAYS find a nugget of information or motivation that re-energizes me! I will never be able to thank you enough.


I am the mother of a 26 year old autistic daughter, who lives with me but drives to her own appointments, writes short stories and books, takes care (with lots of help) of her own small daughter (not autistic !) and can help with some but not all of the tasks around the house...don't ask her to clean or remember to take out the garbage.

Your experience is similar to mine. My daughter *, once she talked about it, said that the"AUTISM EXPERTS got their certificates from the back of a cereal box!" No one ever really pays attention to IEPs in school, and this is my universal finding having checked with other parents. Don't think we are alone either. They don't pay attention to such plans for emotionally disabled kids, for physically disabled kids or to the needs of physically disabled teachers. Schools feel themselves to be under seige, and there philosophy is a seige mentality...man the walls, and check your ammunition.

The best resource for a child in need is its family, and it is a heck of a ride getting the necessary knowledge. When I started raising * in 1979, the autism literature read like some S & M novel..they were in the spank and M&M mode of behavior therapy, with a strong theme of isolation from "too many choices." It wasn't hard to reject. I was at the time doing behavior modification of dogs to put them to work with disabled people, and I figured the postitive feedback training would work with her. I also did a bunch of things about accentuating her positive features. But still, it was many years of going to the schools every day and having innumerable meetings with all the various teachers. It was discouraging to find that some of her teachers hadn't even been told she had some diagnosis; they just thought she was a disobedient and rude kid. So much for the IEP.

Here is my list of essentials:

Oh, and to my amazement, my granddaughter, by this daughter of mine, smiles, laughs, comes to my arms and cuddles, talks and walks early. And my other daughter can't have a child. Who would have guessed......


Dear Richard,

I had a opportunity to read your family story and I hope significant progress has been made since then and for the future as well. My daughter has just been given the diagnosis of PDD_NOS. I can relate to your story because I have been basically going through the same issue with her schools. I have scheduled many meetings and no modification to the IEP. I feel like I'm fighting this battle on my own and I just don't know what to do for my beautiful, beautiful sweet child who needs more support. I feel its me and my daughter against the world. Any advice you can give me would be great. Thanks for sharing your story for so many others.


Thank you so much for sharing such valuable information. Your site is incredible and such a huge help. I appreciate all of your hard work. Hope your son is doing well:) Take care-


Dear Mr. Saffran:

Thank you for your website. My husband and I are the parents of a 4.5 year old little girl who, at 1.5 years displayed behaviors that prompted me to seek medical attention. Like your story, my pediatrician felt the 10 – 15 % delays * had based on testing performed by a local government agency were well within “normal range.” This same pediatrician denied a medical referral for speech therapy when * was around two and later a referral to a pediatric neurologist. Fortunately, I ignored the pediatrician and elected to pay out-of-pocket for 1.5 years of speech therapy to which * responded beautifully.

About two months ago * was diagnosed with PDD-ONS by a pediatric neurologist in *. Despite endless reassurances from our pediatrician, whom we are no longer seeing, what I suspected three years ago is indeed our reality. I battle daily with the anger I feel toward the medical community that, in so many ways, failed our child. On the other hand, I take heart in parents like you and others I have spoken to since *’s diagnosis who are knowledgeable and engaged in the process. It has allowed me to dust myself off and pursue with vigor all that is available for our dear girl.

Much gratitude,


Mr.(Dr?) Saffran, ["Mr." is correct]

I have been doing research for an ongoing project concerning the use of the practical techniques applied in ABA in working with children with other types of labeled behavioral disorders. I'm sure that it will come as no shock to you that your discussion, What Is ABA?, showed up on my Google screen. I thoroughly enjoyed it! You have a wonderful gift for making what we do a little easier for people to grasp. I've been a behavior therapist for 6 years, on and off. I've shared your url with all of my coworkers and we all wanted to thank you for breaking down the barrier.

Kindest Regards,


Hi,

I went to your website and was very happy to read the information you provided on that site for persons interested in ABA and the Lovaas behavior modification therapy program. My son received the intensive ABA from age 3 directly from Tristram Smith, PhD and Greg Buch, PhD from that clinic for several years (and a huge staff of college students we hired) and is now graduating from High School this June, 2005 year. He also worked with John McEachin, who lives in Orange County [CA] and was on our team for 3 years during my son's middle school years. This therapy changed the course of my son's life and I will forever be grateful for the UCLA Clinic for the Behavioral Treatment of Children with Autism and the person's involved with directing his intensive therapy which changed a very "typically" autistic child into a very HIGH FUNCTIONING young adult with very minimal autistic characteristics.
...
We started our therapy program in 1989 after reading an article in the July 1989 Readers Digest titled: The Little Girl Without a Smile......"Catherine Maurice's" article/story who eventually went on to write several books about that therapy.... I called Bernard Rimland and he told me her real name and gave me her telephone number. When I telephoned her, I heard her little girl talking in the background saying, "here's the mail"......My son was non verbal both expressively and receptively and I was excited to see hope was out there and we sought out that hope with a vengeance... Since we were within a reasonable driving distance from UCLA, we contacted their office repeatedly until we received an appt with Tristram Smith and we then hired him for his services to come out to our home for 6 hours each Friday... .We hired and trained a team of 8 therapists and went through many people over the course of several years with weekly "in our own home" meetings with the best of the best training them, and US....... It was long, it was grueling, it was costly and it was "overwhelming" but after we started to see progress which was soon into the program, we kept up with the therapy with ongoing weekly clinics in our home with Tristram Smith until he took another position in Washington at a University to be a professor of Psychology there specializing in autism, of course. He directed us to Greg Buch through UCLA and then eventually, Dr. John McEachin who lives close by (in Huntington Beach). He oversaw what was started by Tris Smith for about 2 more years, through middle school and our son has been pretty independent in his high school years.

Thanks for responding to my email to you yesterday. When I read your site, it prompted me to reply with gratitude and rememberance for one of the most important challenges in my life.

Sincerely,


Richard -- just wanted to thank you -- came across your site this morning -- we have a 5 year old who has finally been diagnosed with PDD-NOS after several years of fighting in a similar circumstance to yours. We are upset that we have lost at LEAST a year (he is now in a special pre-k) but hopeful with lots of intervention that he will progress. Just wanted to thank you. We used to live in Boston -- now in CT.


I just finished reading you and your wife's letter ..... Our son and our experience is an exact mirror of your story. After moving 7 mo. ago to one of the best school districts in California, we are unable to get them to provide better placement, more services, etc. despite the laws they are violating! We have hired an advocate to help us get our son placed into general education for Kindergarten next year with a shadow aide. We may need to hire an Attorney ...

My question is this: Did you pay for the in-home behavioral therapy and then get reimbursed from the school district? Please educate me on how this was achieved, the process etc. We are going to have to do this as my son is 4y7m and the school district and Regional center have stalled for so long that we are afraid our son will turn 5 and it will be too late for behavioral intervention. And he is loosing precious time everyday he does not receive this therapy.

In any case, we, like yourselves, are willing to do just about anything for our son and feel he has a bright future - even brighter if given the help he desperately needs! Please advise me on the steps you took to get reimbursed for the independent assessments you have had for your son.

Thank you so much for your time!


From Response to 'Autism: The hidden epidemic?' (MSNBC)

Your features on autism have been wonderful. As the mother of autistic triplets (2 of 3 diagnosed) I am pleased to see this topic discussed. Parents do feel very isolated and it's nice to know that so many others share the pain and frustrations of having a child diagnosed. I am also glad to see ABA therapy being stressed in a few of your segments. In my opinion it should have a place of its own as the best treatment for this disorder. Vitamins and diet are shots in the dark ... but this is a proven educational method. In three months of the ABA therapy my son went from not communicating at all to communicating using around 20 or so words! As a parent of autistic sons I can tell you this is a major break through. The next huge push will be for ABA therapists in the public schools. Parents will demand to have the therapy used that their children have received in the early years. I consider myself lucky, both my sons are rather high functioning.

P.S. Please show a child having an autistic melt down so my mother-in-law will appreciate what we go through on a daily basis.

Thank you, thank you, thank you for running your series on autism awareness. My beautiful son, John, was diagnosed a year ago at the age of three. John had no language before we began our journey of ABA therapy. With a lot of time, energy, money and faith he is developing into a "typical" four-year-old. I often wonder if the flu shot or rhogam shot I received during my pregnancy contributed to his disorder. I do know that if we don't figure out what is causing this devastating disorder we will have a generation full of adults who can't function on their own. My son is proof that early, intensive therapy is key to this crippling nightmare and I thank you for devoting time and effort to awareness and understanding.


Mr. & Mrs. Saffran,

I am a professional working with children diagnosed with autism, mental retardation, and other developmental disabilities at the Kennedy Krieger Institute in Baltimore, MD. I found your website today by a link listed on the MSNBC site. I have not had a chance to explore all that you have written yet. I did read your story and the section entitled "What is ABA?". First of all, I simply want to say that I am amazed at your dedication. I have no doubt that you have probably read as much research as me, probably considerably more than me! It is so wonderful to read about parents who are so involved and educated! In addition, I also wanted to comment on the "What is ABA?" section. Yours is the first description of ABA that I have read in quite some time that was actually totally accurate! Thank you so much! Thank you for noting that behavior analysis is a science! Thank you for naming Skinner as the father of our field (not Lovaas!!)! Thank you for talking about something other than just DTT! I could go on and on (but will spare you!). I look forward to reading through the rest of your website.

Thank you again! *, M.A., BCBA


Hello Richard,

I just read your article "Why most children don't get the help they need." I was linked somehow through all the coverage this week in the media. I wanted to thank you for the article and your site and tell you that I was fortunate enough to have a Speech Pathologist say many of the things to me that you wrote in your article ten years ago when my son was diagnosed. I live in South Florida and we had no organized system for delivery of ABA services at the time. I, like many other parents, made many "cold calls" to people begging for information and was able to put together a home ABA program with the help of many dedicated professionals. For some reason that I'll never fully understand or cease to feel grateful, my son is one of the fortunate people with autism who has made a full recovery. He attends a strenuous prep school and recently celebrated his Bar Mitzvah. If I told people today of his past diagnosis, they would think that I need to see psychiatric care! I think the thing of which I am most proud is the empathy he feels and often shows for people with disabilities of any kind. I'm sure you'll be inundated by emails after the coverage this week, but I wanted to tell you how much people appreciate your work and tell you what a number of parents have expressed to me when I hesitate to go into my son's success. They always say "please tell us your story. We need to have hope and to believe that there is a chance that my child will do as well as yours." Keep writing.

Sincerely,


Hi Richard

Thank you for a very interesting read. My son has been diagnosed with AS and at age 13 and is now 16. He has been diagnosed with many other conditions such as A.D.D and Dyslexia among others before this diagnosis. I have had no support for this condition from professionals as there are simply none avaliable. He attended a public school where he was severely bullied at 11. I removed him and placed him into a private school for year 7. We had concerns at times for his well being. So again I placed him in another private school so he could be with his sister (no AS also older by 23 months) he was progressing well academically and for once. I had hope. Until later in that year elements of bulling and taunting began to affect him once again. With no support of help from the school I withdrew him. I noticed signs of depression so giving up employment all together I focussed on him and his needs. after six months with him feeling safe again I enrolled him in his year 10 course online. Here he could go on and learn at his own pace and has achieved his certificate. He is highly intelligent and has had several fixations from space science to plants, animals and now computer programing. We are looking at online courses for IT. The behaviors and social issues are still here so I will keep working at those. He refuses to take medications and I will not give up on finding options for him to find his dreams and goals.


I found a link on the net to your article and – for the first time – feel like there is someone articulating the frustration I am feeling.

My son is 3 years old. Last July he had a vocabulary of 20 words and would bang his head on the floor a dozen or more times a day. When he protested to a food I merely presented him with, he would spontaneously vomit on it. When his sister, 2 years older, dared to look at him he would fly into a tantrum the likes of which no parent of a “typical” child could ever imagine. He made eye contact with me and no one else. He did not respond to his name. That was July. Now, in February he has an endless vocabulary. He hasn’t vomited or banged his head as a means of expressing discomfort in many, many weeks. He says please and thank you. He is learning not to walk on his toes. He tells me he loves me and asks for hugs. He looks people in the eye without being prompted. Our miracle? Money. We dropped everything and I became a full-time advocate for my son. I fought for services, educated myself and hired an au pair to live with us. But what is so unsettling for me is meeting parents who have no idea what VB-ABA, dietary/biomedical interventions, auditory processing therapy etc. etc. can do to improve the life skills of their children. It’s not their fault. Our medical profession has all but ignored autism. I had the pleasure of informing our son’s GP pediatrician that he is autistic after her RAVE reviews at his visits. I keep a journal written to my children, started when I was pregnant with our daughter. At one of my son’s early appointments I wrote in it: *: You’re growing like a tree! You had your 2 week appt. with Dr. [xxx] on Friday and you have gained over a pound since you were born! You went from 6lbs. 14oz. to 8lbs. 1 oz! The word she used was “magnificent”! She said that you were neurologically excellent and she’s very impressed by what a good looking newborn you are! At 2 ½ I told HER that * is autistic. She didn’t even know what to look for. Our son may not ever be “typical” with respect to his autistic characteristics but at least I am able to give him tools with which to use to communicate if he chooses to. I wish every parent of a child on the spectrum had access to these tools. I can’t imagine a more torturous existence than knowing that the only thing between my child’s ability to thrive in the world is something as tangible as money. If parents of children with autism weren’t so mentally and physically exhausted at the end of the day I would recommend to each and every one that they learn how to rob banks (strategically chosen as those insured by the same companies denying coverage for ABA….) before they give up on their kids.

Our public services lack the basic foundations to be able to adequately educate children with autism. And what happens to these children who are left out to fend for themselves?

In my recent letter to the editor of the Baltimore Sun recently I wrote, in part:

The “dirty little secret” of autism treatment is that some children with autism eventually lose their diagnosis. Their miracle cure? Money. Less affluent families theoretically have a legal right to a free, appropriate education via the IDEA enactment of 1997. But parents are so overwhelmed with basic daily care that relatively few have the “luxury” of being full-time political/legal advocates as well.

Many parents hock everything to raise money for mostly anecdotal treatments. Then, we are put on waiting lists – sometimes for years. The hideous fact that insurance carriers get away with refusing coverage is somehow rationalized by the lack of scientific research (funding) behind current therapies. Yet, uncovered therapies may give my son the chance to drive a car, attend college, raise children – perhaps even find a cure for a debilitating neurological disorder.

Many autistic children can become indistinguishable from mainstream kids with respect to behavior and basic communication skills. The rate of autism twenty years ago was 1 in 10,000; five years ago – 1 in 500; today – 1 in 200. As recently as the 70’s a reported 90 percent of children with autism were quietly shuffled into institutions, robbed of their futures. Chances are, if you don’t know someone who can benefit from autism research and funding now – you will soon.

Mr. Saffran, thank you so much for putting it out there. These children are being overlooked – someone needs to step up to the plate and get them what they need.


dear richard,
thanks so much for your info and web site..it was very interesting for me to read. I recently moved my sons from one school to a more structured aba setting. i also work extensively with them at home and have help severla hours a week. * has made significant gains since the move...he is now repeating words and is communicating using yes.no.more.etc...very exciting.
my sons are now 4 (just turned) and were in a loose progam for too long...i'm convinced they can recover...but not without lots of help...more people need the infor you provide. the old program was more accepting of the autism...not attempting to have them make major changes. it is sad to think that some parents stay with a program like this for years...thinking that's all their child is capable of.
good luck to your and your family....we are our child's only advocates in this world


I am deeply concerned that you have links on your site turning parents away from biomedical approaches. I am a big believer in ABA however my son has had the most dramatic results from biomedical interventions. This just may be the case for new parents but they would never know because you are turning them away from the idea. I find this disturbing. A disappointed viewer of your site!


I hope you dont mind me sending an email to you, but i just read your story and was amazed that the school system is not only messed up in Virginia but elsewhere to, I am the mother of a 6 year old autistic son and have been having trouble with the schools here for a while my son will do great for two weeks and then just be totally different, I am taking him to a psychiatrist which is nothing but a waste of time and money, I have been promised by the school to have abehavior plan designed for home and training as well, that promise is now almost 4 years old. I am inspired by other parents who have the courage to do what I dont and hopefully one day Autism will be athing of the past for us as well but until then I will keep fighting and try to raise the best little boy I can. Thank you for your story and your time.

* in Virginia


Dear Saffrans, I just found your website and read your letter to the Brookline School Committee. I am the parent of a son with autism and apraxia of speech and a son with Asperger's syndrome attending public school in Brookline. We have lived in Brookline since before the children were born. Unfortunately,it seems the school system has not changed very much in Brookline since you wrote your letter. We have experienced much of what you had experienced. I have had mixed emotions taking my children out of public school and away from neurotypical peers to place them in private placements Your letter has convinced me that Brookline has always been this way and it will never change so my children and their futures will continue to suffer from the lack of appropriate education and support. Thank you for sharing your story.
Sincerely,


Hello Mr. Saffran,

What an incredible site. It has been both informative and inspirational. While I am intimidated by the disagreement I am having with my SD, I find strength in reading that I am not alone.

My questions are these. When it comes to a diagnosis of Aspberger's/mild PDD. Is a less restrictive environment better than one for more severely disabled children?

Secondly, My dealings with the district so far have been a joke. I have repeatedly asked to see a program in my home town that I KNOW is a possible placement for autistic-like preschoolers. My Cousin attended there and his mother, my Aunt knows other parents whose children have gone there. The district's reply to my request is typically a disdainful pig snort followed by the ever so tired "that's an out of district placement". I have spoken with one advocate, and frankly he scared the daylights out of me. With claims about how that particular SD feared him. How he would start by charging them $2000 for an evaluation for my child, "then if they still want to play hard ball, we get my whole team on it and charge them another $7000". Do these sound like the words of a power player? I have to say that to me they sound like the words of a greedy fellow, who is in his own way contributing to the poverty of our school systems. Or maybe I am the naïve one, does one really need to rely on this sort of person to stand a chance with the SD?

Single mom, with a long road ahead would love to hear your input


Dear Richard.

I want to thank you for such a great website. My name is * and I live in * NJ. Originally from *.

I have a child named * who just turned 3 this month. Its been a journey. Im writing because tomorrow morning *. I will be meeting with the School District.

They have already started off on the wrong foot. My son has received Early intervention since 9 months. He has received PT, SP, and ABA. I used to think ABA person was just so mean to my son. After reading your website I have understood why she was so tough on him.

The meeting tomorrow is a reeschedule meeting from *. * is developmentally delayed. and the school only offered SP for 2x a week. This is what is called standard. My son needs so much more. I have a 6 year old and a 4 month old. I know at what level * is suppose to be at. Compared of course to his 6 yr old brother.

His early intervention ended this week. I am very lucky my insurance has a case management department and they are willing to help me get therapy sessions for him so that he does not regress.

I know I am writing a lot and jumping all over. Im writing because Im scared of what the outcome of tomorrow is going to be. I want to best for my son. but this Child Study Team seems to just want to place him anywhere.

Please write back when you receive this. I do have to say that your website has given me strength to fight for my son. I am the only person here to voice his needs. My husband is away at the FBI Training Center and feels awful that he is not able to attend this meeting. Thank you again for writing up this website. It has given me information that I needed and a push to say what I want to say for my son.

Talk to you soon


Thank you. I am so tired of fighting a school system with "watered down" programming, and your website inspired me to keep fighting! Thanks so much for all the good work. Hopefully my (almost 5 year old) with PDD-NOS will finally get the help he needs. Am contacting our lawyer today. Just wanted to say thanks for giving us some hope.

Sincerely,


Hey Richard,

I just wanted to thank you again for keeping up such a great and informative website. You don’t know how many times I have referred families to your site for information on ABA/IBI. Your approach is so accessible and easy to understand. The site is easy to navigate and has so much information. So thanks for keeping it going all these years!

Cheers,


Dear Richard,

I am hoping beyond hope that you can help me My little girl, * 4 yrs old, was diagnosed with PDD-NOS in April 2003. She had just had her 3rd birthday. The school system who diagnosed her in * County Florida told me I would have to wait until September to start her in a special ed class. Everything I read explained how important early intervention was, so my husband and I pulled our savings out and started * in a company called *. To obtain the recommended 30 hours a week, it would have cost in excess of $4000 per month PLUS speech therapy at $100 per hour. My husband and I are both self employed and carried our own insurance which didn't cover any of the therapies according to our contract. The insurance was $950 per month, so we dropped that and started * on Speech Therapy AND ABA. We thought it was only for a few month until the school year started.

By the time the school started, we were out of savings. * was not verbal in April, but was much more verbal in September when she joined the "Special Needs" class. She has never had (Thank God) any stimming, self-injurious behaviors. In fact, she has no Autistic traits except speech delay, poor eye contact and the anti-social behaviors of the condition. The children in the class she was put in to were dramatically impaired. Head banging, high-pitched continuous screaming and hand flapping. There was chaos in the room a lot of the time. * would cry at night in her sleep. She would tell the other children by name that "it's ok, stop screaming" or "There, there no head on wall, ". She lost almost all the language she had worked so hard to achieve in the previous months and which had cost us all of our savings. The IEP which we were asked to sign (and we did, not understanding the goals, which were skills * had already achieved) was ludicrous. One goal to be achieved within a year was for her to be able to echo the words of a favorite song. She had achieved this within a week of the ABA. We started * on ABA after school. She was clearly sad every day going to school. We asked the teacher if we could video the class once or twice to help us with understanding what * was going through during the day and also to watch her progress. She became extremely defensive and would not allow us to do the video. When * was in the school 3 months, we told the teacher that we were very concerned about the delay in getting her potty trained.( At the IEP meeting we had been told not to potty train her, that they would let us know when it was appropriate. ) This was 3 months later and they kept telling us not to start. * is a tall, pretty girl and she was beginning to get a lot of stares for her bulky diaper. We asked for a meeting with the Autism specialist of our "Team" . This lady met with us and told us not to potty train yet, that it was a "huge and important undertaking with a child with this condition". I told her that my daughter was trying to experiment with the toilet, and the teacher again became insistent that we not begin potty training. She said she had a new little girl starting the following week and she would not be able to take * to the bathroom every 10 minutes when she had a new girl. I was furious and began potty training * that day. Two days later she was potty trained and had no accidents. *'s one obsession was repeated video watching and repeating the contents of the video over and over again. We told this to the IEP team and about one month after * started in the school, we discovered the children were watching videos for hours at a time during naptime.

We had a beautiful home in *, Florida and decided to sell it and move into a tiny condo we had purchased as an investment for *'s future. Both My husband's business and mine began to take a downhill turn and we spent all of the proceeds of the house on *'s therapy. We hired a private therapist who had no experience, but she only cost $400 a week. *'s makiing incredible progress, but still needs so much more therapy. We just went to our Neurology appointment and she's still in the PDD-NOS category, but with a truly marked improvement.

I don't know where to go from here. I am out of funds and my husband has closed his company to try to do the ABA therapy with *. But my business is not producing enough money to cover us both and the speech therapy and the Lead Therapist from * to monitor *'s success. I really need your advice. But I do not want to think about law suits now I have no time. *'s receptiveness is not as instant as it was when she was three and I know it's because she's getting older.

Sorry to tell you my "life's story", but I thought you might be able to understand if you knew the history.

I'm really looking forward to hearing from you.

Best Regards,


Hi, I am mailing from New Zealand- where we do have some (well one!) ABA organisation.

Your information guide is fabulous and I thank you!

I do have a question which I am interested to find opinions to- which is whether ABA is really suitable for children with Aspergers? My daughter has a diagnoses of Aspergers, and we recently started academic teaching 1-1 with a therapist using ABA theory. She has learnt more in a few weeks of this than her entire 4 years at school! One wonders if this is just the 1-1 teaching- ABA or both.

We soon start some social skills, communication, and laguage processing using ABA.

Do you know of any ABA groups/ schools etc specificly for Aspergers developing thier deficits?

I am considering starting a school for children like *, who have nothing available here. Some manage in mainstream- but she cannot (after 4 schools and anxiety to serious levels). She is now in a unit of various special needs children much lower functioning than her, and without 1-1 gains nothing. Part of my research for the possible school is how to structure it- and if it should be ABA based throughout.

Final question- my daughter suffers alot of bowel troubles, and cannot often stomache the 'treats' being used as re-inforcers. Any hints on other re- inforcer ideas?

I appreciate your thoughts.

Regards,


Hi Richard and Jennifer,

I was just searching for information regarding ABA therapy and your website came up on my Google search. I have a son who is going to be six in a couple weeks who has been given 2 different diagnoses by 2 different doctors. The first diagnosis is mild mental retardation, and the second is autism spectrum disorder. I was prompted to do some more research on my own after his TEAM meeting today and the TEAM thought it would be good to implement ABA therapy into his IEP.

I just read about your pain and wasted time, and I can completely relate to what you have been though with your little guy. I have been involved with Early Intervention since * was 22 months. It has been a long road to get the services that * needs to be successful in the classroom. The problem that I have been running into is the school district not following through with their "promises." The best way to describe it is "they talk a good game at the time, but good luck getting them to follow through." It continues to be a battle of finding what is going to work and maximize his potential. I spend more time finding effective services OUTSIDE the school district and then when I tell the TEAM about the additional services and the incredible effect the therapy has had on *'s progress, theylook at me with shocked faces. All I can say is "DUH" I get annoyed that they act so surprised. If they were doing their jobs, I wouldn't have to seek addtional support from outside agencies..I could go on all night, but I won't. :) Thank you for the development of your website, it is very informative and helpful. I wish you the best of luck to you and your family.


Richard,

I'm sorry that it took me several years to look again at your website. I've always recommended it, but now, for some vane reason, as I read it again, I see that you have done a terrific job of keeping it up and adding comprehensive resources. I have been giving out a list of websites to families, but now realize I had only to give out yours! Further, your end piece editorial, and the three sections that it links to are excellent. I too have often had to talk with parents about the potential of their "left-hand side" children, and seen them wait an extra year until their child "really" needs help, only now to have the complication of trying to make these gains in the school setting, which always proves to be a terrific handicap. I'm glad that your child continues to progress, and wish the best for you. Thank you for your excellent resource.

*, Ph.D., L.P., B.C.B.A.


Dear Dr. [sic - I am not!] Saffran,

My son is 2 and diagnosed autistic. He has been enrolled in an intense ABA program through the University of *. Only after 3 months he has made significant improvement. However, insurance is fighting me tooth and nail They consider autistic children as hopeless, incurables (without saying such a thing). Can you please help me in some resources or letters that I can take along to the appeals committee. I will be going in front of other Dr.'s and state my case. Any help in this matter would be great.

God bless,


Hi, As a pediatrician who works with many families of autistic children, THANK YOU SO MUCH! Your site has helped so many of my patients deal with the complexities of getting therapy started--and paid for. Sincerely, * MD


Dear Mr. Saffran,

You probably hear this a lot, but thank you for your invaluable web site. Being the mother of a newly diagnosed autistic (* is 26 months old), I have tons of questions and had I not found your web site, the information gathering process would have taken so much precious time. So, your site is accomplishing your goals in helping other parents and families get information.

Thank you again!


Thank you so much for sharing your resources with others like us. We have just been told that one of our two year old twins has mild-moderate autism and the other pdd. We are completely crushed and at the same time overwhelmed and have no idea where to start to get the best treatment/intervention. We have found your website to be a super resource and I thank you. You are a great example of what we as parents need to do…stay focused and stay positive.

Best regards to you and your family,


Hello Richard, I greatly appreciate your informative web site! I have just come to the end of a one year legal battle with my town's school district. Beginning next week my son will be getting 30 hours of 1 on1 ABA. 20 hours at home from the * center and 10 at his school with aides (who are reporting to the * Centers consultant). My son turned 4 in October of 2003. Since we have learned of his autism diagnosis I have been kicking and screaming to get him an intense qualified ABA program. (His first year with the SD, they provided us with unqualified home ABA - we had no idea) Even while he was in Early Intervention we fought (not as much then because we were not as informed). As much as I blame the SD for making me hire attorneys and advocates and spend thousands of dollars, I also blame EI. When we first went to them, we knew nothing about ABA, nothing about autism or treating a child with autism. We didn't even know if our son HAD autism at this point. They knew. They knew a lot of things that they made sure we didn't know. That was a time when my son could have been provided with intense treatment at the most optimal age. He was only 2. My husband and I should have been given all the right information about what to do. They dragged out every little thing and eventually told us our son could see an educator and an OT for 1 hour a week each. "We think he needs Speech Therapy" we said to them. "Well Mr. and Mrs. *, there is a very long waiting list for speech therapists". Weeks went by and I read A LOT. Conclusion: my son needs ABA and he needs it right now. "Oh yes", they told me. "There is something called ABA".

WHY DIDN'T YOU TELL ME BEFORE!!!!!

All information was given to me as I brought it to their attention. I believe EI stalls as much as possible until a child turns 3, fully knowing that he is then handed over to the towns SD. Infuriating!! They are doing a HUGE diservice to young children with autism.

Do you have any information about good special ed. school districts in Massachusetts??? If so, please let me know. We are ready to move. If we stay here, we'll have to hire an attorney every year.

Thank you!

...

I just finished reading "pain and wasted time". I can't begin to tell you how similar our stories are. I think the saddest part about this situation with some SD's is you have to accept that there are people out there who do not care if your child has a chance at a normal life. Throughout the past year, that thought has brought tears to my eyes on a few occations.

I have a 5 year old neice who has just recovered from leukimia and I can remember her parents telling me about how the doctors, nurses and social workers responded when they first brought their child to Childrens Hospital. They engulfed the parents and the child. They told them exactly what treatment their daughter would be undergoing for the next 2 years, and gave them all the support they needed. Although austism is not life threatening, how nice it would be if treatment for autism were administered with such urgency and quality. Maybe someday. Take care.


I recently visited your website and was very impressed at the wealth of knowledge available. I am currently a teacher in a severe and profound classrom and have worked with many autistic and ppd-nos or similiar students. I do want to express my gratitude for the information you have provided. I do have one small problem with your site. On the page "What is ABA" you state "If our kids could learn from a model in the first place they wouldn't have autism! " How can this be? Autism is a medical problem, with scientific and medical research that shows a distinct difference in the brain of a person with autism and a person without autism. I simply don't understand how a medical affliction such as autism can simply disappear by using a teaching model. I have used a comdinatin of ABA and the TEACHH models for several years with dramatic improvements but have yet to cure a single student of autism. Thank you for your time and your site.


Dear Richard,

Thank you for your wonderful site which I will recommend to many other parents. Tonight I picked up my 11 year old son from daycare. It was the most beautiful experience. The sky was turning pink as he was playing outside with three other boys, chasing each other and playing touch tag, huge smiles on all their faces. What a long way he has come! He had a developmental delay from the beginning and made no progress in the public school Early Childhood program. He was finally diagnosed 4 months before his fifth birthday. I had a friend with a 3 year old with the same diagnosis who didn't talk or look at you and ran to cringe in the corner when they visited. When I visited their house a few months after they started ABA, she answered their door and said "Hello Mrs. *" while looking me in the eye and smiling. We started a 40 hour a week ABA program immediately after his diagnosis in addition to his previous private speech, OT and PT. When he began to stutter, that therapy was added as well. We did a sensory diet for Sensory Integration problems and incorporated ideas from the speech pathologist, OT, PT and stuttering expert into his program. All the members of the team communicated with each other well. I also tried Fast ForWord with him as well. I had been told by the school district psychologist that the program would be "very intensive" at an IEP meeting. I told her "I hope so, he needs it!" The school personnel told me he would never learn to read. Within one month of starting the home program he learned the entire alphabet! I cried at that first team meeting as I knew he was on his way. The program had to be frequently changed as he learned so fast. I did alot of generalizing on the concepts we were working on when I was on my own with him. Now he has many friends who call and ask to play with him, has girls fighting over him and is a very happy child. He lost his diagnosis 16 months after we started ABA according to the same pediatric neurologist that diagnosed him. On my first visit, when he made the diagnosis, I said "I know what to do, an ABA program". The doctor turned to his resident and said "that's the program where they make the kid sit in a chair even if it doesn't want to". When we returned for the followup visit 16 months later and he reevaluated my son, he was amazed and stood up to shake my hand as he said "You've performed a miracle here! How did you do it? I want to know everyone who helped you. Your son no longer has autism. He is in the normal range." He is now recommending it to his other patients as he had not seen a properly run ABA program before. * has some underlying learning disabilities which run in his father's family. However, he no longer has autism and rarely stutters. He takes a long acting ritalin for ADD and attends a school for kids who are LD. He is a successful child and will be an independent successful adult. I thank God each day for ABA. It was difficult for me at the beginning to comprehend that the school district did not care about my child but only about money. I had a vicious battle with them, had lots of my experts at the meetings and an agressive special ed attorney, the mother of a special needs child herself, who was also president of a nearby school board. We never went to due process as we terrified them. I had to work three jobs to pay for the therapy as the school district didn't cover it all and paid only a year and a half into the program. It was a trial by fire but well worth it. My friend's daughter ended up in the gifted Kindergarten. We are still friends and it never ceases to amaze me how children can recover and grow. I know now that the key to success is a well run intensive program as early as possible. Whatever financial sacrifices must be made are well worth it.


"But there is one essential program component which we cannot provide, even with legal intervention, and that is a school with an open mind. For that reason we are soon moving to another district that uses research and cooperation, not litigation, to craft effective programs."

Hi Richard: I just spent an hour reading your excellent website. Thank you very much. Our story is so similar to your's that I won't bore you with the details. I was struck by the above quote from your letter to your SD (old SD, I guess??). We are in the middle of due process, been doing ABA for 2 years, with outstanding results, and fighting, fighting, fighting for funding and any shred of cooperation from our SD. Our ABA consultant believes that we could stop our home program in the near future IF we had a SD that would cooperate with us. We do not and probably never will so we're looking to move. Can I ask which district you're moving to or do you compile a list of districts that use "research and cooperation, not litigation to craft effective programs"? Does a such a list exist anywhere? Most of my research is based upon word of mouth so far. We live in * and I guess we're hoping to stay in the Northeast but that's not definite. Thanks so much for any information you can give me. *, mom of *, an amazing guy, (and 3 fantastic big sisters)


I cannot thank you enough for putting this website together. I used the research you cited as well as other research parents gave me in our grievance hearing with our behavioral health system. They denied our 21 mos. old son wrap-around services citing he was too young and his delays were typical. I am happy to say that with a great deal of hard work (which you are obviously familiar with) and documentation from his doctors, we won the grievance hearing. Our son now receives 20 hours of TSS a week, but I have had to find an outside consultant to set up his ABA program which is definitely costly. But again... I just wanted to thank you for reaching out to other parents.


Thank you so much for responding to my email. Just a little background on *. She is turning 3 on * and has very few true words although she is learning much more now that she is on the GF/CF diet. (I cant say enough good things about that ) She signs about 15-18 words appropriately and says bye bye as she waves at herself. Right now DDD Department of Developmental Disability is paying though Early Intervention for our OT and Speech and Hab (habilitation) hours 30 per week. Transition to special education services? Is that something specific? We have had a "transition meeting" Our DDD coordinator and the special education coordinator for the * school district. This meeting entailed the special ed coordinator (*) pushing a piece of paper across my dinning room table at me say "The team would decide *'s placement" The two places in negotiation are the self contained classroom and the developmental preschool. I informed her that the self contained classroom was not up for consideration as far as my husband and I were concerned. So to answer your question I feel no support as far as the IEP is concerned we have sought out our own. The school wont even recognize aba as a teaching tool. "There is no specific proven therapy aba or otherwise" according to the head of SE in the * district. There proposing a separate classroom with no aba it's what they call the teach method and that is not even strictly followed its just aspect of it. Or the other option is a developmental class( 5-8 typical kids and 5-8 special needs kids) with no supports. I feel she needs speech therapy (we've been waiting 9 months) and one-on-one also. She's very compliant and is learning so much everyday at home with aba. I don't feel she will not be able to cope with the developmental class I just feel she needs the chance to attend and see what happens in that environment. But I feel she needs the supports because the teachers seem far from educated in aba in autism in general. We have since hired an advocate and she has informed us of our rights. What would an attorney do? We actually have a lady who works with * 10 hours a week and she too is a mother of an autistic little boy. She is having the same issues only worse with the same school and her son is now not meeting his IEP goals I'm sure because of the lack of training his teachers have received. So they are now considering private preschool . I guess I've just lost all faith that the public school system is concerned with the best interest of our kids. Thank you so much for listening and I appreciate your advice


Dear Richard- Thank You, Thank You, Thank You! As the best advocate for my child, I am often asked by other parents "Where can I go to get all the info?" You have done it! We have fought for and demanded good ABA services over the years (4) since our son's diagnosis, and it has paid off. He is on his way and the future looks uphill but bright! I will be sending many parents to your excellent resource. May I link to your site on mine?


Hi Richard,

THANK YOU for writing! It is always nice to meet a fellow warrior in the autism battle. We totally agree with you about these people being complete idiots. They are also mean. We wish we could give them your e-mail and it would help them pull their heads out of the sand. You are right that they are not going to be impressed by any article or a mountain of articles, but they have notified us in writing that they need this stuff to be able to consider our requests. Basically, if we don't provide it, the answer is a definite no and if we do provide it, maybe they will consider it (but probably it is still no).

Unfortunately, we live in Utah, which is about the worst state there is for special ed relating to autism. Not only do they provide no services and no funding, they tell you everything you are doing yourself is worthless and harming your child and they tell you your child doesn't need any services you might request, that they will get better if you just "wait and see". What they are doing is unethical. If I had a few million, I would take them all the way to the Supreme Court if necessary. It is hard to believe they are so stupid as to think our son doesn't need services, so maybe they are just mean spirited. If so, I don't know how they live with themselves.

We have already tried to find a lawyer in this state. Last year, we called every major law firm in the state and there is no special ed lawyer. Also, no one was willing to represent us against the state. A few told us it is a hopeless cause here in Utah because everything is rigged, including the special ed director who hand picks the lawyer (always a friend) to rule on the due process cases, and the judges are also "in bed" with the whole corrupt system. In over 100 due process cases, only one has ruled in favor of the parents. We called the famed autism lawyer Gary Mayerson in New York. He was hot to take our case. Then he found out we live in Utah and there was silence. His next suggestion was for us to move.

We have tried the specialist route and they have denigrated every specialist we have brought in, basically putting them on trial, with open hostility. One family who did a due process a few years back has the best case Gary Mayerson says he has seen and they lost the due process, they lost in federal court here, and now they are in regional court in Denver and owe $250,000 in legal bills. They flew in the top ABA consultants from around the country to testify and the federal court judge ruled that the special ed people from the district were the experts, not these renown autism experts. We are just trying to do what we can, but know that if we really go to the mat, they will exhaust our finances and exhaust our health and resources such there will be nothing left for our child. It's a pity. Thanks for your support. It means a lot.


From BabyCenter®

Also, ABC news did a story on a family who used ABA. This story aired in March of 2001 which was the same month that my son started ABA. I was exactly where you are. Adam was 20 months old and I was terrified that this therapy was going to take away my sweet boy. I had built this protective "box" around Adam and wouldn't let anyone near him because of his fears and anxieties. I just couldn't imagine anyone touching him, let alone making him sit at a table and do puzzles. I remember holding him on my lap while he screamed and his therapist holding his hand while he held a puzzle piece and her helping him put the piece into the puzzle and then cheering for him. I just thought "no child should have to go through this!" And now, fast forward 2 1/2 years. Adam is a bright, happy, outgoing 4 year old who talks non-stop. He's inquistive, loves school, has friends, plays chase with other children in the Burger King play tubes, and has slept over night at his babysitter's house while my husband and I got a much needed romantic weekend away. I know, you're saying...no way..not my child. But it can happen...and it will. Therapy is the only way to help our children be the best they can be.


Thank you Richard, your page has helped me tremendously! I too am a father of a child with autism. His name is *, he is 31 months young and my purpose for living. I know it is just the beginning of a long road for us and that is why I wanted to thank you for providing information that better directs us down that road. Thanks again.

Sincerely


Mr. Saffron,

A short note to thank you for the effort you have devoted to the ABA - PDD/Autism/Hyperlexia webpage. I am very impressed and am certain that this website has been and will be an ongoing source of well reasoned information and resources on the above topics. As you are well aware, these conditions are relatively rare, still often misunderstood (by professionals and parents alike) and often serve as springboards for ventures into "miracle", extreme and unproven theories and treatment methods. You have successfully sidestepped these potential problems and have provided a very useful information service. As a professional who sees one to four children with one of the above problems per month, I welcome any and all well founded sources of help for the parents in my practice. 

Thanks again; and best wishes.

* Professor of Psychiatry and Neurology Director, Neuropsychology Laboratory * University health Sciences Center


Richard,

Hello. I just wanted to thank you for the hard work that you have put into your site. I used to work as a provider in Kansas City (I have just started here in Minnesota), and I sent families to your site quite frequently. It was helpful to all of them, and in many cases a god-send with all of your answers to their many questions. Keep up the good work. What you are doing is making a difference.

Sincerely,


Hi. I spoke with you over 3 years ago when I was first trying to start my home program for my son. I was wondering how your son is doing. Did he recover like you had hoped? My son is doing well, but he still has residual issues. I have never met anyone with a child who recovered and I was just wondering if it is all just a myth. I am grateful for the progress my son has made through intensive therapy.


Mr. Saffran,

Kudos to the service to the families of children who share these conditions with their children. My situation is a little bit different. My son is nearly 6, and displays many of the "classic" autism characteristic behaviors. Unfortunately, I live in Alaska where there is ONE pediatric developmental doctor in the state. He was screened two years ago, and was recommended for early intervention through the school district. The school has done a serviceable job working with my son in the 2+ years he was in pre-K.

I have put the school district on notice that I am going to be on a first-name basis w/most of the my child's "team". It isn't personal, but it's about my child's childhood. Unlike before, I am a parent armed with a lot more information, thanks to you and others.

Question #1: Until two weeks ago, I hadn't even heard of A.B.A. Is there any documented evidence that there is any effect using this method with children between the ages of 6 and 10? If so, please provide the source.

Comment #1: If you live in a small population state, you may be in deep trouble if you have an autistic child. From my search for schools that specialize in helping autistic children, most of them are in the eastern U.S. Now it seems that the exception to this is North Dakota, they seems to have some support and services. If anyone would like to contact me directly to offer a different view, please feel free to e-mail me at fnspj@aurora.alaska.edu.

Question#2: I have struggled trying to get him seen for a full evaluation by this doctor in Anchorage. I finally I've decided to pursue taking him Outside of Alaska. Is there any pitfalls I should be aware of when going for a diagnosis?

Questions#3: I have no problem making the decision to relocate in order to place my son in a private school. Is there anywhere that rates the different schools for special needs children?

Comment#2: If you have a autistic child, and you live in Alaska, GET OUT NOW! I'm no Democrat, but I believe the State's solution to children like ours, is to put them in a deep pit and push dirt over them. The state agencies up here have been ZERO help. It's the same old tired excuse, "the funding has been cut".

Thank you for your consideration,

Shann Jones Fairbanks, Alaska

(Use my name and location. I run from no one!)


Thank you so much for your website! My son was just diagnosed with Autism Spectrum Disorder (PDD-NOS). He is 2.5 years old. This is the hardest thing I think I have ever dealt with. It is encouraging to know I am not alone. There are days I don't even want to think about it anymore and then there are days I am in denial. I am still dealing with fear and anxiety. When his psychologist diagnosed him, I was prepared. It was the treatment that scared me - and the unknown: funding, who, what, where, how long? The words ABA or EIBI were (and still are) so foreign to me. I did not know where to start and I just prayed that I would be able to find the right treatment for him and that I would be adequate to give him all he needed. We are lucky - we live in a county that has lots of funding and support. He was diagnosed quickly and he has been in an EI program since he was two - 6 months before he was diagnosed. But, it is still so overwhelming. Coming to your website was a blessing. It is nice to have things laid out in a step by step manner - that at least I can understand! Thank you for all of your hard work and for helping those of us who don't know where to start!

My son is so beautiful and so happy. He is like no other child I have ever been around. My heart just aches for him. I remember the night he was diagnosed. I could not sleep - the words kept swirling around in my head. I held him all night long and I prayed over him that whole time. I will do all I can for him and look at his success and not his failures: he says a handful of words, and he signs a lot more; his receptive skills are unbelievable - he understands so much more than he did 9 months ago; his eye contact has improved so much and he gets excited about sharing things and he is starting to interact a little with other children; he draws people - with eyes, ears, nose, mouth, arms and legs; he hugs his sister and waits for her to come home. I could focus on the fact that he is not like other kids his age - it is hard not to - or think only on what he does not do. But, that just about kills me inside. I will focus on what he is doing and what he will do.

This fall will begin our challenge to get him in a program that uses ABA. I am trying to read all I can - if I have to do it on my own I will! So, thank you again for dedicating so much of your time and effort to helping parents of autistic children.

God Bless You!


I'm sitting up in the middle of the night (we are in California so it's 4:48 am) as I do so many nights trying to figure out where we're going wrong. Our daughter's story is not a success story so far. She was diagnosed very early. We tried gf/cf at 2 years old for 7 months. Her levels became normal but we saw NO CHANGE in her. We were told her yeast levels were off the charts. We tried Nystatin. Her levels became normal but we saw NO CHANGE in her. We thought both of these would work because she had severe reflux as a baby and has been constipated her whole life. We've tried various supplements but have seen NO CHANGE in her. We tried one infusion of secretin but saw NO CHANGE in her.

We started LOVAAS at 2 years/3 mos. After 6 months when she had not developed any echo and had no progress in receptive, our psychologist told us she'd never be mainstreamed or live alone. She wasn't even 3 yet. We started searching for something else, believing that our psychologist had checked out and that her LOVAAS program was shutting her down because we kept doing the same things she could do over and over again to keep her successful and never made any progress in communication.

We started VB just after 3. We have a wonderful team who loves her very much. We believe that the first year was just teaching her to be happy again after she was so shut down with LOVAAS. She has made small strides. She can echo 3 sounds and can sign some things. She has slightly more receptive. She has just turned 5 and has not made nearly the progress some of the parents on your site describe.

She is extremely pleasant and sweet but she sometimes screams in the middle of the night and laughs histerically at night and during the day. We believe there is still something biological holding her back but don't know what to try and can't understand why the diet and other biological interventions have not worked for her. Please help with any advice you can think of. I'm sick at heart and would do anything for her. Thanks so much in advance,


Dear Richard, 

So much has been going on with autism since IDEA97 separated the disability as its own category. What about help for older students with autism who never received the appropriate services in elementary school?

I inherited such a student, complete with SIBs, physical aggression towards others, over-protective mom, unresponsive special education administration when asked for assistance, training, and down right help. I was faced with one-to-one aides hired off the streets and receiving no training, assigned to this student, getting bruises and welts, and bite marks, and pinches from this student. My 5 other colleagues refused to work with him.

I was left with a moral responsibility to do the best based on my experiences with autistic students and training from the days using behavioral modification principals of extinction, physical adversives tempered with positive behavioral reinforcements.

The conflict reared its ugly head when school policy of "corporeal punishment defintions" conflict with methodology clashed and placed me in a terrible dilemma.

Are there any others who have faced the same situation as I have. No wonder special education teachers in this highly stressful field working with the most difficult students bail. Who would be left to work with them?

So, any enlightened thoughts about helping a child with these sets of circumstances? If you recommend another job, pumping gas looks mighty interesting.


I don't mean to be disrespectful, but your page is giving false hope to parents who think their children can "overcome" autism or be "cured." I have a son 7 with Asperger's /hyperlexia. I have accepted my son for who he is. He has a disorder of the brain. No amount of training or medicines or special diets are going to "cure" him. The best we can do is teach him how to survive in a world that sees autism as something bad, and wrong. I embrace my son, autism and all. Autism is part of who he is. Without it, he would be a different child, not the child I gave birth to. Thank you for listening.


hi i got 5 year old autism child.try to teach him at home.education he was get did not do any good did more harm for him then good.no any good web site to teach him he love the computer.thank


Hi Richard, I've spoken to you several times along this new journey (autism). You have been a great help. I wondered if I could run this by you ... I have a little boy 2 1/2 who used to love toys, certain foods etc. Since they have been used in his ABA program he won't play with these things or eat these foods. He is starting to develop hitting and pushing 'behaviors' every time a demand is presented or even a puzzle put in front of him. His therapy has taken a real turn for the worse. He spends most time running away from the table and tantruming and now he's doing this around the house when not in therapy. He never had these behaviors before but I think is learning effective ways to end demands so to speak and would rather run and stim than do any work. We are continually told how "non-compliant" he is ... but not WHY. Several times it was suggested we use "time outs" ... and for "nose picking" when he had a cold ... "nose spray" was suggested to use!!! Another time while teething and cranky it was suggested we "Take away his teether since that is the only thing he is reinforced by" ... all aversives I think!! I am scared for the behaviors I'm seeing. He used to be a very happy little boy who just needed a lot of teaching. Now he hates teaching and it seems US, his toys, his food... EVERYTHING. This therapy is changing behavior for the worse.


I love your site!!! Please help me with this. My sister has an autistic child who is now 18. It is too late for any sort of early intervention, obviously, and ** will never be able to live independently. I shared my sister's anguish over her son's inexplicable disorder; her grief and dismay at the number of "experts" who first denied anything wrong (age 1 to 4) and then denied any hope (forever after). The battles with the school district were particularly agonizing. Then there was the stigma from neighbors with healthy children, who shunned my sister and her husband, because they thought ** was a discipline problem. Finally, there were the "experts" who sold one supposed cure after another -- all expensive, all useless.

My problem is this. My sixteen year old daughter is taking a course in psychology in high school. To my horror, (and yes, that's the right word) the first assigned reading book was a piece of garbage called "Dibs, In Search of Self." Dibs is an inspiring little tale to anyone who has never had to deal with a real autistic spectrum child.

It's about a six year old boy who is socially aloof, doesn't talk, doesn't play with other children, has delayed gross motor skills, pronoun reversals, is extremely bright, engages in bizarre repetitive play, and throws screaming tantrums (biting and kicking) when it is time to transition from one activity to another. Because the book was written in 1964, this is all the parent's fault -- particularly the mother's. She is portrayed as a distraught and guilty woman who avoids accepting the fact that she is responsible for her child's emotional disurbance. You see, she failed to bond.

Under the gentle and loving guidance of the author ( a pioneer in "play therapy") the brave little boy is able to work through his pain and fears, and blossoms into a bright, happy child. This takes maybe eight to ten sessions. The book is essentially a commercial for play therapy, and a treatise in the Mommy-bashing theory of autism, which was disproven years ago.

I didn't want to cause problems for my daughter by storming into the school and demanding that this book be removed from the curriculum. She is sixteen, after all. So, I wrote a polite letter explaining why the book is such a disaster. I received a polite response, explaining that Dibs is NOT an autistic child (the author makes this clear!) and that autistic children cannot recover, therefore Dibs is a victim of emotional abuse. I went on line for clinical info to refute this idiocy, and learned that the book is still being published, and warmly reviewed by those who know no better. Go to Amazon.com and read the reviews -- they're sickening. Anyway, how do I educate the teacher and get this book banished from the school??


HI, My name is * and I am a Master's Student in the Special Education Department program at Buffalo State. Your web site is great and I am going to give it to some parents that I work with. There is so much information and so many resources for parents and educators to explore. You have done a great job I hope many more people will explore and find out new and interesting information and become better educated. I know I did. Thank-you agin for a great site.


Dear Richard,

I want to thank you sincerely for the extremely useful information you have given me access to on your web site. You easily have the most informative site that I've been able to find in my 2 month long search on the internet. I have a 31/2 year old son who was diagnosed with autism in December , and was told by the neurologist "he needs an ABA program and insurance won't pay for it". I left the office not having any idea what an ABA program was, and have not been able to find a concrete explanation of it thus far. Now that I have found your site, I know what lies ahead of me, and what my job is in getting him the therapy he needs.

Thank you for your time and effort.

Sincerely,


You are my HERO. Thankyou so much for the priceless info on your website. God Bless you Mr. Saffran.


My name is *. I am a * yr. old mother of *. My eldest is a * year old girl, named Katy. She will not answer to any other name, which is ironic, since, "Kathryn" (a name denoting strength, nurturing, and leadership) was chosen solely, to provide her with options. Should she require a more individualistic identity into adulthood, Katy, Kat, Kate, Kitten, Kay etc. were available. She was born bright eyed, strong willed, and beautiful but she would always be Katy.

Our road has been long and frighteningly twisted and after, many years of evaluations, doctors, therapies, EEG's, EKG's, and oh yes, IEP's, someone finally, quietly whispered the term PDD. The letters caused my heart to skip. Learning what they meant, caused it to stop. Not from fear, not from anger, but because the one thing, the worse thing, the thing they would never say, was also, the one thing my heart always knew.

Now, I find that after, looking under so many heavy rocks and searching for so long, I am exhausted. For being absolutely isolated, barring the support (and I use the term with a choking glint of sarcasm) of teachers and doctors, I have been told my daughter seems to function well for the severity of her disorder. I pride myself for the sweat and many tears of frustration I've poured into our fictional "relationship bridge" . I always said, " if I could not teach Katy to live in my world, I would go to hers." The problem is, I think I have. Could you help me find my way back home?

Since, her diagnosis is so new, we have only recently been accepted by our local board of MMRD. I am overwhelmed by the requirements of submitted information, and request forms, and waiting lists to receive services. I have no clue where to begin or even what my family needs from them. What I do know is that the strain has chasmed my marriage and I have two other children whom I would love to meet. We all live in one house but our lives are orchestrated in "Katy's World."

I have a list of resources and net addresses and phone numbers and just the thought of telling and retelling this story, causes deep feelings of dread. I want to do whatever I can do for her, I just don't want to do it alone, anymore.


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