Letters from parents and professionals (mostly to me, but also some Internet news group selections)
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Dear Richard, Your Web site is great and very helpful. I am a father of an Autistc child. * is * years old... I am in a nasty battle with my school distict for home ABA discrete trials. The school distict has her in a water ed down(5 hours a week of discrete trials and lots of down time) full day center based program(* is on the waiting list for 3 years for the better programs). The school district feels that me and my wife can do the discrete trials at home ourselves even though we are both proffesionals and work many hours. Do you know of any sources that can squash there arguement?
Thank you in advance....Your web site has saved me many hours Thanks aqain
Hi, My name is *, and we have a son diagnosed (2 years ago already!) as HFA. He has been receiving high quality assistance for 1.9 years now. First through EI, and now thru the school district. He has 30 hours 1:1 therapy at home, plus we can access 8 hours consultation from a behavioral therapist, 2 hours speech per week. He is now doing wonderfully. He is making friends (albeit slowly), his spontaneous speech grows daily, he has incredibly strong academic skills. We hope that within a year, we can begin to phase out (formal) therapy altogether. There is hope out there.
A Journey of a Thousand Miles... (from news:bit.listserv.autism )
I would like to share a story with everyone about Jagger's first word (after he stopped talking). My son, Jagger, seemed like a very bright infant & toddler, had several "baby" words: Mama, Dada, cracker, cookie, uh-oh...until he stopped talking at about 15 months. I completely chalked it up to the fact that he had just undergone a surgery to be re-circumcised, and was really unhappy with us for messing with his private part, knowing how males are so consumed with this part of their anatomy! Being my first child, I had no means for comparison, so I was unaware that anything was wrong. I figured he was having some sort of language delay, and that he would be talking in full sentences within 6 months. Over a year and a half later, still not knowing he was autistic, I decided to get tough on trying to get him to say something...anything! He came up to me, grabbed my hand and led it to the chewable vitamins. I took one out, held it out of his reach, and told him "Say Please!", He flipped out, banging his head on the floor, wall, and me. He was kicking and screaming, and having a tantrum like you wouldn't believe~ (maybe you would!). I just calmly told him again, "Say Please!" After 15 minutes of this commotion, my husband started to get upset with me...."Just give him the damn vitamin, Micah!" I glared at him and said sharply "You and Jagger are both going to learn just who is the most stubborn around here....I don't care if this kid never learns another word in his whole life...He is going to learn the word 'please'!!!" My husband was surprised to see his usually laid-back wife so hell-bent, and decided to let me do it my way. Well, 15 minutes turned into an HOUR and fifteen minutes of pure tantrum hell. I stuck to my guns despite my husband's "Jesus, Micah!" comments under his breath and 'Hurricane Jagger' thrashing about. Alas! I HAD WON!!! Jagger came to me, eyes red and swollen, his voice sobbing...."PEEEEAAS?" My heart leaped! He said 'please'!!! So poor Jagger, after all of that hard work refusing to talk, had earned himself the sweaty vitamin still in my hand. I hugged him, and kissed him and tickled him to pieces, and then I gave him another vitamin...a fresh one!
Jagger was almost three at this time. If he had it his way, I think he would have never talked. He was diagnosed at 3yrs 3mos with Mild to moderate levels of Autism. His expressive and receptive language was between 11 and 15 months of age at the time he was diagnosed. He is 5yrs 5mos now, and is less than 1 year behind in these same areas. I worked so hard to get him to talk, now he never shuts up. I love to hear him talk to me, he has an amazing mind, and a hysterical sense of humor! I know that his speech is a gift...but it was packaged so tightly, I was barely able to unwrap it. Micah
Hello! I am new to the wonderful world of computing and the internet but I am learning..I came across your page today and it was the first really useful info I have been abel to find. It is great. I look forward to comming back and back until I can get all the info. I have a son who is autistic. He is now 6, we have done the secretin thing and some other things and he seems to be developing good speech, however his behavior is slipping and that is what I was searching for was decipline guidlines when I found your page. It is encouraging to know that there are resources out there and others in the same situation to talk to I look forward to developing links and folks to share with. Any help would be great! We live in *. I look forward to my nights off when I can dig deep into this site... THANK YOU FOR BEING THERE!!!!!!!!!!!
Just want to say thanks, very generous of you to do what you did. I am just starting to read, there's so much. I have a 3 year old boy, * who is apraxic, speech delayed and a bit PDD. We don't have all the proffessionals, insur and schools like in the states, so every night I search the net, buy the books and try to do some "program" with some general support fr my family and a nanny. Thanks,
We exchanged a few messages a while ago. I am the father of two PDD children. * is *, * is *. Both are wonderful kids, high functioning, and have a real shot at recovery.
With help from private funding, we have provided an in-home ABA program for * and basically told the district to go-away. We will not make the same mistake we did with our older son.
* has been through the ringer. His diagnosis was blown by the district Child Study Team (before we knew better than to trust them), and we lost 6 months of intervention that he could have benifited from. We then set up a home program with our school district that they have been trying to take away ever since. Despite overwhelming progress and overwhelming evidence of the district's in-ability to run ABA services, they are insistent on moving him into an inadequate, sham program in their school buildings.
We are about to go to trial, and are in the final stages of gathering evidence and expert reports. I was wondering if you had ever before heard of a school district haphazzardly slapping together an ABA based in-school program (no training, no supervision, no cirriculium, 100% staff turnover in one year, etc.) and using it as a reason not to fund a highly successful home program.
Also, I know "bad ABA is worse than no ABA", but I do not have a quotable source or footnote for that opinion. I'd be open to suggestions there as well.
Thanks in advance if you have any info to contribute.
need a parent to discuss the possibility there is actually a child out there like mine. my son has pdd, and is currently rotting in the * public school system due to a group of uncaring, unknowledgable special ed dept, who claims in spite of a lengthy eval from the best kid's hospital in town[ the *] that i paid for, that myson has nothing wrong with him. i'd like to share my situation in the hopes i can learn from others or you from me
Thanks for making your excellent web page.
I got a lot of really great information and am trying to help my child.
Just a note of thanks for a great site. We have started a FEAT chapter here in * and would like to use or link to your site,with your permission of course. Our 4 year old is making great strides in his ABA program which is over 2 yearsrunning.
Hi there, Thank you for your link. It is very helpful. What I would have given to see that 3 yrs ago!
To make a long story short, we have a * yr old who has received intensiv aba for 3 yrs now. He does not auditorily process language and cannot talk. He uses PECS to communicate his common desires and can recognize single written words: 1) our receptive instructions program uses written cards "wave" "clap" etc. He still can not do it with auditory Sds. He needs to see the word and then he can comply and 2) his receptive and expressive label program is all written words...he knows over 300 written words that label objects. He also knows his colors and shapes receptively and expressively (written) but has been stuck understanding numbers and action labels for a yr now.
My point I guess is that I have exhausted both myself and our financial resources. He is ready for a day school (or kindergarten public school level). We live in * which has horrible options for him. The good news is that my husband can get a job out in * fairly easily due to being in the financial world. Most of his opportunities are out east. My issue is that we don't know where to begin.
We received a listing of possible schools in * which was helpful but still difficult to assess from *. Do you have any advice on how to go about a search for good schools either public or private without losing my sanity in the process? I feel like I'm looking for a needle in a haystack.
Furthermore, *, our son, is low functioning. Thus, all the schools that excell in or prefer high functioning potentially recoverable kids would not take him. Neither would the schools that want ones that can at least understand auditory language (this is why he can't get into the only 2 private schools here). The bulk of programs out there are for these kids. Creating or adapting programs for a child like ours is very hard given the lack of auditory processing language and ability to speak. Yet, his behaviors and successes in learning are directly related to his understanding of what you want from him. So he does well with individuals who are ABA minded and trained.
For example, if you point to a chair he tipped over because he got angry and ask him to pick it up, he might or might not. However, if you turn off his movie and then tell him while pointing to the chair, he will immmediately reply with a good attitude and put it back at the table exactly where it belongs. He doesn't process the language but he knows by your point and withholding of his reinforcer that he needs to do something. He also knows that the chair belongs at the table visually as well as it was naughtly to do it in the first place. Does that make sense? He is very delayed yet has the ability to use his visual understanding of the world fairly well. At least in his home environment which he is used to. He clearly understands the world of contingencies and has good eye contact.
Of all the parents I have talked to or was refered to, they all have much higher functioning children. * will most likely never talk, nor do I think he'll obtain auditory processing skills. I've put three hard years of work towards this and still have come up empty. He is extremely apraxic and slurs out verbal stim. It has taken me a while just to admit that to myself. For a long time I had held out that his aba program would eventually bring this out in him.
At the same time, I think it saved him from being institutionalized. So there have been benefits as well. And I have learned a lot in the process. Anyway, if you know of any families or persons who are faced with similiar struggles (low functioning child with no language or comprehension of language) that reside out in * (anywhere) would you mind asking them to contact me (or me them)? I'm looking for any help I can get. I would sincerely appreciate that.
Many thanks for your time,
Dear Richard, I am the father of a four year old boy, who was diagnosed as autistic at age two years. We have been running the Lovaas programme for almost two years now, and have achieved language, reading, humour BUT are still struggling with the 'social skills'. I am told by another parent that you have had success in this area, do you have any drills you have used, you could share with me?
Hope to hear from you.
I read about you and your son on the user to user board on the pdd support site. I tried to hook up to your site but was unbale. My son, *, has just been dx with pdd. He is * old. I am already very frustrated with EI as i initially contacted them almost 6 weeks ago and he has been admitted for services, but has yet to receive any! I am trying to be pushy and advocate for my son, but not burn bridges at the same time. The programs specializing in pdd all have waits at the moment (under staffed!) and they are stringing me along as well. I got the feeling from your post that you know how to get things done. I am just starting to reach out to people in the autism community for support and advice. I live in * and would love to hear from you on advocacy isuues, treatment and MD's. I am interested in knowing who is respected in treating pdd as I would obviously like my son to be treated by the best physicians possible. I am looking forward to hearing back.
Thanks for your reply. I love your web page. I subscribed to the Special Ed Advocate, it looks like it will help lots. This is exactly the kind of stuff I was looking for. I have attended several advocacy workshops in our area and learned much, but the workshops were general startup kind of info, I have a good understanding of our rights and what the school systems is responsible for, it's how to go about getting it.
I was like you were a mind reader when you mentioned about parents wanting to be "nice"; that has been my attitude for four years. The school has been appreciative of my work, but now I think it is time to be more assertive. I insisted on my parent report being attached to *'s IEP this year. It listed the type of modifications that were made for him, also listed the services I expected. Don't know what kind of legal stand that gives me, but at least it is on file and a place to start.
Thanks again for your help, it has been the best response from my post. :)
...Frankly, I am underwhelmed by my school district and would rather walk the streets to pay for "services" privately. In my concern for his language development, I took him to the local school system to have him evaluated (He's in a private preschool). Three puzzles and an inability to draw a circle later and the teacher was insisting that he has Asperger's and that I had to get him into HER program "right away" if I really wanted the best for him. When I told her I'd have to think about it (polite refusal and we both knew it) she wanted to send a social worker to my house.
I admit I overreacted and told her that if she wanted to do that, she might as well swear out a warrent on probable cause for child abuse then sit back and be prepared for a lawsuit that would leave her jobless and barefooted.
Thanks for the info. I'm getting a referral to get him to a speech therapist. He needs that no matter what else.
My daughter is much younger but she has experienced nothing but positive results from her ABA program. She started ABA when she was 18 months when she was diagnosed with PDD. We started with 10 hours a week and are now up to 20 and she is doing extremely well. She has gained incredible strides in her speech since January and she has not developed any bad behaviors at this point except two year old typical stubborness. I feel ABA is so effective but it also certainly depends on the certain therapist. He or she has to relate and understand your child and know when to let up and when to make demands. Thank god I have been blessed with incredible therapists who have grown to love my child for who she is and know when she has had enough. I would not change what we did for our daughter. She has grown so much in her interaction with her parents and sister as well as the increase in her communication. We support ABA.
You are an amazing man.. I have sat here in front of my computer printing and reading all your information on the website, its been several hours and a lot of information later, but well worth it all. It sounds like you had a long rough road with all this, where did you find the time to get all this information. Thank you, thank you. My husband and I have been thrown into this since Thanksgiving day 1998. That is when our son * really started to withdraw, loose speech, rock more intensly etc.. * was only 23 months old, now a few months later and many doctors and testing he has a dx of PDD.NOS with autistic behaviors and sensory motor intergration issues. I wanted to believe he would be ok with some therapy, but as time goes on I realize he doesn't have the foundation to learn and progress. We are looking into an ABA program in our home 15-20/wk. We live in * and in * you are alotted one BIG hour of therapy a week for a child 0-3. I spoke up and now have 2 hrs. of speech and private * has 1hr speech and 1hr of OT. Not pretty. Talk about frustrating grew up in * and about had the familys bags packed to move back home to get the necessary tx (that still isn't out of the question though}. MY question to you is how did you go about starting a home program for your son, privately through an agency or *.. We are looking for any suggestions or videos we can train ourselves and helpers for *. * also has an older brother *, and a sister *. Life is crazy, but I am going back to your web site and get some more insight. Thank you so very much, now I know where to send people on the web, I now have become the person to turn to for this information in my area. You have definately made my life a whole lot eaiser, thank you. Best of luck...
Today's world presents few heroes. Complaints abound that sports figures, performers, and political leaders do not rival those of the past. Few fit the bill of a hero. But if you look close to home, you may be surprised how well your own family member can serve as your hero.
Kevin Jr. celebrated his fifth birthday this week. He was diagnosed with autism nearly 3 years ago, just after his second birthday. Henrietta (my wife and another hero) and I immersed Kevin in a 30 hour weekly home program of applied behavior analysis. We became "follow through" parents, nearly always insisting on the type of behavior that we desired and taking the necessary steps to compel it.
Kevin complied. He is a persistent student and hard worker. After 19 months at Princeton Child Development Institute (PCDI) in New Jersey he shows improvement that exceeds even our own high expectations. At a time when other kids his age are just beginning to understand that they are about to start kindergarten in September, Kevin is reading well in his Edmark reading program and just began McMIllan first grade math in school. Not only has he attended school daily from 8:30 am to 2:15 pm since age 3, he also has incredible demands placed on him at home after he returns there following his school day. Photographic activity schedules are the course at home and his learning day continues through and even after dinner. His hard work is an inspiration to me.
Kevin is my hero. He is my inspiration. So you take those sports heros and space men, you take those political leaders of today and of years gone by. When you review their biographies I will bet my life that none of them were living the life that Kevin does when they were age 3, 4 or 5. I know that he will do his best for his teachers, his mom, and me. He wants to please and that feature of his personality is uplifting to me. I think I will have a bust made of his pretty little head and keep it in my office as a reminder that today's world does in fact present heroes--heroes that may be small in stature but large of heart.
Happy Birthday Kevin Jr.
Kevin J. Carlin
What a great web site!!!! I have spent an hour already and just hit the tip of the iceberg.
It is so up lifting to read about your success. You are doing a wonderful job for your child and I can't thank you enough for sharing the information.
I am downloading ABBY right now on my computer. I am going to bring that into school with me to see if that will be of assistance to my sons teachers.
I read your definition of the ABA program and it seems very positive. The school system said they are doing aspects of it with my son (undiagnosed) they said not all of it applies to him. I think I need to ask what parts??
Thank you again and continue with your success with your child.
I hope this note isn't a bit premature...but we had our IEP on Friday the *th. They offered us 30 hours of ABA through the * program at *. Sp/L, OT, and PT every week. We don't have it in writing yet, but we wait with these expectations. Also they gave it to us through January, and would like to see him begin a transition into preschool, we explained how it worked, and that noone has that crystal ball, but I too would like to see that within the next year. In small quantities for success.
I did everything your wife told me to last summer. We saw Dr. *, we had seen * because they initially put * in the * program, and in her discharge summary she totally supported *'s new program, as intense as need be. We also had a report from * of *. The same month as the IEP Dr. * did an update observation of my son via an hour tape that we made of his program, breakfast, bedtime ritual, and freetime around the house. She wrote the best recommendations for his program.
We sent everything certified, we always summarized any phone conversation (that was important) in a follow-up letter, and we were very diplomatic and generous to any input they gave us about our son. They had denied us a transition meeting, they invited the * and the Director of the * program here in the city. We called *, spent two hours looking at their classrooms and speaking to the Director, and then she said "We don't do what you want" and we told her we knew that. She looked at us strange and said "but I was invited to your IEP" and we told her that since the school invited her, we felt it imperative that we see her program and research their teaching methods. She then gave us a report stating that any curriculum that had the 5 basic criterias to teaching autistic children was effective. And it listed Lovaas as an example! When I sent her a thank you for her time, I copied it to the school's Sped coordinator. In the text we talked about her program being impressive, but that we wanted to stress that we were ecstatic about our son's present program. They are two different methods of teaching autistic children and aren't comparable. That we didn't know why the * School Dept. had invited her to the IEP, but since they did we wanted to take the time to research their option.
When we got to the IEP neither she or the Director from the * was present. We actually made our case via the mail. So now we have to make a case for 40 hours. Yes we are happy, and I have never been so stressed in my life.
Thank you again,
Wow! I am so impressed by your efforts with the website! I am not super computer saavy and was unable to open any blue links (???) I'll have * take a look. Thanks for agreeing to meet * I will talk to him about it tonight.
*s program will be funded through EI until she is 3 so it is not an immediate concern but I don't want her program funding to be cut off when she turns 3 (of course we will sell our house and move in with our parents if we have to in order to continue her optimal program.) Thanks again,
I am writing to say how much I enjoyed your site related to autism and ABA therapy. My name is * and I am currently studying second year speech pathology at * University in *. I would be interested to see how Alex goes on his ABA program, as I am interesteed in learning more about ABA and becoming an ABA therapist. Thanks to you, I managed to contact the * ABA therapy association for more information concerning this. Thanks so much for a fnatastic site, Sincerely,
I have been looking at your awesome website. Thank you so much for all of the wonderful information. How do you find the time to add to it/maintain, etc.? I especially enjoyed the pages by John McEachin, and the FAQ about ABA. I wish I had seen this at the beginning of our quest to provide ABA to our son (we're about a month into it). We would like to have had a true Lovaas workshop but we had to make do with a local consultant. She seems okay, but we have no basis for comparison. Anyway, thanks again for taking the time to help other parents have access to this information. I have an idea of what an ABA lifestyle is like now, and I marvel that you have found the time. I am very grateful! One thing about having a child with this disability: it opens up our hearts to those with similar situations. We become better people; I guess helping others helps us cope. Sincerely,
Hi Richard, my name is *, and I have a 3 1/2 year old mildly autistic son, *. I really want to learn how to use ABA, but there is no way we can afford to pay someone to come the house to work with our son. How can I learn to be his teacher? Can I learn from books? I have no idea how to handle him when he is going through one of his "angry periods". The temper and screaming and unhappiness and negativity about everything. He hit a bad stage in December, where he had 10 temper tantrums a day, for a few weeks. Then all of sudden, he gained about 50 new words! I forgot all about his bad stage. Now he is going through another one. For instance, last night I asked him if he wanted a grilled cheese for dinner, he said "yeah". So I made it, and put his favorite chips on the plate with it, and he got very angry, and pounded his fist on the food, mashing it all. Of course, I was telling him to stop that, and i cleaned up the chips, and left his sandwich on his plate. Well, he was still having a fit. Normally, I ignore him during his fits, but last night I made him go to his room until he was "done crying". He came out when he was good and ready, and in a fine mood. Then daddy came home and made a penut butter and jelly sandwich for him. He didn't know I was set on getting him to eat the grilled cheese. I have no idea what to do. Please steer me in the right direction, what would an ABA therapist suggest. thanks,
Thank you very much for your information!
Your site is wonderful and will help me tremendously!
Thank you for sending it!
Dear Richard, Hi. My name is *. I live in *. My daughter was diagnosed with PDDNOS this past Summer at * Hospital at 5 years old. Prior to this the diagnosis was borderline PDD or a speech delay. She was making gains in a special ed preschool but they were small. Anyway, the battle to get her into an ABA program or start one at home was difficult. She finally started in November. She goes to a private nursery school with on-site ABA. The ratio of children are 80% non special needs and 20% special needs. I have a behavior consultant, a lead therapist who is also a speech teacher and two therapists who do the trials primarily. She goes 5 days a week. Richard, the progress this child has made in a few short months is unbelievable. I almost see light at the end of the tunnel. I frightened though. I have letters from a psychologist who states she needs to stay at this program through Kind.(receving ABA in the afternoon). I also have a letter from * stating the same thing. When we took her for a reevaluation in Jan. * was blown away at her progress. They really feel that if we make a transition now it could jeopardize her chances of inclusion.
Thank you for your email. I immediately went to your web page. There is a lot of information there! We recently met with a * rep and are still in the beginning stages of that.
It is frustrating. We are lucky to have a smart pediatrician. Autism is not his specialty, though, and he encouraged us to find support and information from different resources. Her diagnosis which got her into the Pre-K program is simply "developmentally delayed". I believe she tricks them because she *does* talk! She is smart, understands a lot more than she reveals, but yet she does not answer or ask questions the same way that, for lack of a better way to say it, a "normal" 4-year-old does. I can remember how excited I was the first time (maybe a year?? ago?) she said "Where's Daddy?" It was a completely appropriate question that she actually wanted an answer to! But such a question is very rare from her. And although I ask her about what she did at school, I almost never get an answer. Even when I have specific info about what they did that day. Occasionally, she'll answer with something like, "Did you had a blue treat at school?" (which means that she did). I loved the autobiographical info included in your web page. I do not know a lot about ABA. I suspect we do some of it already, but are probably nowhere near as thorough as we should be.
Thank you for your email and link to the web page. I really do appreciate your help.
My all-time favorite fan letter:
I LOVED YOUR SITE IT WAS HELPFUL AND EASY TO UNDERSTAND NOT LIKEE STEREO INSTRUCTIONS.....THANK YOU
Dear Mr. Saffran,
Thanks for a wonderfully informative web site. I am in the process of trying to determine a therapy strategy for my 2 year old autistic son. I live in * and was interested in * and their services. I saw where you have noted that parents have brought suit against this organization. I would greatly appreciate any information you could give me regarding this. I am feeling very overwhelmed with all the choices that need to be made immediately. Any advice or suggestions would be welcomed.
Thank you again for all your help.
I am intrested in finding out more information on ABA. Can you refer me to anyone using this method in the * area. I have found that there may be pieces from all information that may help me with my daughter. She is 3 years old and has just started speech therapy. We are seeing great progress with minimal intervention but I am open to any and all possibilities. Our daughter, as of now, is speech-language delayed. Can you modify your program to help her ? How far do I need to go ? Sensory Integration has been unbelievably effective and I have been following basic Montissori concepts with a lot of structure. I have found positive reinforcement to be a godsent. We use a sticker chart, hugs, kisses and a lot of praise, I do understand that I have a lot of control over this issue in my daughter and am willing to work hard to help her. ... Everyone seems to have an opinion but I can't seem to find alot of hard core data. I also think that parents who have children with any complex disorder or disease are willing to try anything and become victums to many " experts " . I personally believe in your drastic approach. If a parent can be brave enough to look at the truth and not false hopes or their own denile and truly put their children ahead of their needs and fears. Your approach is the only one that makes sence. I hope you can give me some insight as to how you can help us. Thankyou,
Hi, my name is * and my son 5 yrs and 2 months was diagnosed with autism last October. Since then I have been collecting information and has concluded that a home-based ABA would be best for him. He is "high functioning" if I may use that term (meaning, he can listen and respond to questions from stories, write his name, read about 10-15 words, count objects and write numbers, match by items by size and shape, put together puzzles etc). He is weak in speech, peer-interaction (almost non-existent in his regular Kindergarten class) social interaction, and has some amount of imaginary play that decreases his awarenss when he not engaged one-to-one. When I put together a home-ABA for him, where do I get the material for day-today trials? Do I have to prepare them for each day based on some guidelines or can one buy it? The outline of my plan is as follows: 3 1/2 hrs/day for 7 days a week with his parents + a tutor, and 6-8hrs/week with a speech therapist, plus his regular kindergarten in the afternoon (2 1/2 hours.) I am trying to find a lead ABA therapist who can train us and oversee the plan on a monthly basis. But my main question is, where do I get the material? Any tips on this would be most helpful. Thank you for putting up the web page.
Thank you so much for all the information you put on the Internet. You have helped our family immensely. We have two boys on the spectrum. *, who turns six in about a month and *, who is five today have both been in home ABA since May 1998, with *. (Yes, that means we have two boys who are both five now and autistic and in ABA). Can you please send me all you have on the _Katie Beckett Waiver_? I have heard the term but have no idea where to go to learn about it. I would be thrilled if I could help you in any way. I am a dentist who has specialized in the care of Special Needs Patients for nineteen years. I have treated about 50 patients with autism and use many behavioral treatments in my practice now since we started the home ABA.
As the parent of a recovered son, I love your site. It would have been very helpful to me to come across such a well organized site to skip all the painful steps to discovering the info you have laid out so well. Our son, too was related and intelligent but made no progress in special ed. It took a lot of legal intervention to pay for our program, too. As well as a lot of extra jobs on our part.
Thanks so much for responding to my message (Help!) and for putting me in touch with your web site. You've obviously put a lot of time and effort into this, and I want you to know that it is sincerely appreciated. I am in a peculiar situation. I have a daughter who is suspected Autistic. I don't see anything posted anywhere about girls. I know that this usually affects boys, but if you know of anything about it's effect on girls I'd appreciate it. Again, thanks!
My name is * and I am the mother of a 5 year old boy with Autism. We have been doing an inhome ABA program for 1 and 1/2 years now and have seen tremendous progress. We have documented our child's progress and are wanting to go to the school district in our area to appeal for therapy to be payed for in whole or part by the district and for services to be provided by the district in other areas. I found a letter on the internet referring to your appeals for your child and wanted to know if you could give me some advice. I would be interested in the chain of action on your part, materials you had prepared for presentation and what you asked for from your district. I have a million and five other questions but those are broad enough that if you can address those, you will likely, accidentally answer others. Your help would be greatly appreciated.
Sincerely and Broke,
Thank you for your website. I do not even remember through which link I found it. I am looking for clear, concise information that can assist my son's teacher/shadow during his mainstreaming. He is in a * school based 1-1 program, and spends half of his day with one of the 1-1 therapists in a regular preschool setting (he is 4). Our private speech therapist was not pleased with what she observed. We had wanted the social stories/scripts/drills used in the 1-1 to be functionally applied during regular class, with associated prompts and reinforcers. Unless, I provide something besides the specific goals, we will get nowhere. Any advice or references. Thanks in advance.
Thank you so much for your post regarding pretend skills! You have no idea how much I needed that! We have been having a problems with coming up with these!
Even tho' I figured I shouldn't have to since we pay $135 per hour for Lovass consultant fees! Our consultant only wrote one of these play scripts for us and expected me to come up with the rest! I tried, I came up with two, but it is hard to come up with ones that last more than a couple of minutes.
I am going to the library TODAY!! Thank you so much! God bless,
tonight you have given me hope.
if i could talk with you i would be so grateful-
i have a beautiful 2 1/2 yr. old little boy...
That was a very comprehensive site. I just printed a bunch of it, to get started, and I read your letter. Those are my worse fears right there. I have a feeling I will be thinking of your letter often for inspiration as we move forward with new determination.
It's wonderful to find you and the other people that have been responding to me here. Everyone is so generous and sharing. The wise and powerful advise to match everyone's good intentions isn't bad either. I have gotten almost a dozen emails in addition to the postings with what I keep thinking is a complete range of help. Then I get another one:)
Just wanted to let you know how much I enjoyed your website especially checking though the links. My name is * and I live in * but that didn't matter as there was a lot of relative and much needed info. I recommend it to my friends all the time. The strange thing is I really cannot remember what link took me to your site in the first place, not that it matters. I wanted to know two things- 1. The ten pages which I read on your site, is that all there is? I'm not complaining, just didn't want to leave anything to chance, and is the first page the page where you begin by saying "I am the father of a six year old boy recovering from autism". 2. Is there anywhere on your site where people can share their similar experiences? I myself have a 7 year old who never spoke until he was 3 1/2 years old. He was never given a diagnosis and so I had to go out on a limb to get help for him. Suffice it to say he's doing much better now but until you have to go through something like this you can never really connect with someone who's in a somewhat similar situation. I applaud you for all you are doing for your son and also what you have done to help others. Keep up the good work.
Dear Richard - I am interested in implementing an ABA reading program for my daughter. She is almost 9 and can learn to read single words but I am interested in a more phoenetic approach. * had no language from age 2 to 7 but is now talking at about a 3-4 year level. Her language is still developing. We did Lovaas at home for 3 years before she started Kindergarten in an inclusion setting. Can you recommend a reading program that we can do at home and maybe even at school if they are willing, which they have been so far . Thanks for your time!
I am a therapist and graduate student in *. I was searching the web and came upon your site. I just want to congratulate you on the enormous success of your child! If my clients parents were half as vigilant, persistent and most of all, as knowledgeable as you have made yourself, my job would certainly be much easier. I am going to recommend your web site to all four of my families. It is sad to say that most of my parents feel that DT ends when my session does. You hit on an extremely important point, coordination between school, therapy and home. I can only give the parents information, I can't force them to follow through. It is all too easy to take the simple approach. Hopefully your information and story will inspire some of my clients parents! Good luck with Alex! Sincerely,
Thank you for a most informative site, which I bookmarked immediately! I had already encountered some of the information, but I appreciate having it all in one place.
You and your wife should be commended for such a great, well organized site. Pat yourselves on the back...
My name is * and I am writing in regards to my friends (*) recent diagnosis that thieir 2 year old child, *, had autism. Since then, they have researched and find that they would like to implement the "Lavaas" technique to help him. Here is the problem:
They are finding it is a hard battle to get help through "The Center" as it seems they are trying to delay until the child is three and they no longer would hold financial responsibility. Also, my friends are located in * which is approximately 52 miles from *. They are finding that when they can find help, that there are mileage restricctions. * has been evaluated and it has been suggested that 40 hrs/week be spent on his treatment.
As you know, early intervention is a key factor in treatment. If you have ANY suggestions whatsoever that may help them, it would be greatly appreciated.
Thanks for your suggestions about curbing *'s spitting. I have put in a request to my caseworker to consult with a behaviorist. Also, I didn't mention all the details in my post. * has been in a home-based discrete trail program for the past two years. His progress in language has been extremely limited, but he does know how to play appropriately with simple toys (puzzles, bead stringing, tracing stencils, lacing shapes, etc.) Unfortunately, we have been unable to get him to do any of the appropriate activities without being continuously prompted. In fact, it is a real struggle to get him to do it. He keeps lapsing into stims and using avoidance tactics like throwing himself to the ground rather than sit up. It is one of my priorities to find some appropriate activities that he enjoys, but it seems nothing can compete with his stims right now.
Anyway, I was so desperate this morning that I decided to do an intensive behavioral intervention. I kept * at my side the entire day. This meant we were either sitting next to each other or if we got up I held onto his hand. I was able to observe his face at all times so that I could catch every spitting incident. I also broadened my definition of spitting to include any behavior even remotely related. This meant not letting * handle any straws, spoons,etc. that could be used as split flinging implements. Also no saliva bubble blowing, no saliva swishing in his mouth, no leaning his head down or away from me to spit before I could see it starting. I also prompted him to do some puzzles, look at some books, and watch some videos. We went on several long walks, too.
The incidence of spitting has greatly decreased, as have all his other problem behaviors since I didn't allow them either. I expected a lot of resistance and tantrumming, but he was actually fairly accepting of the situation. It was a very exhausting way to spend the day and I got nothing else done, but the reduction in the amount of punishment I had to inflict was worth it. I don't know how long I will have to keep up the intensive monitoring or how to fade it. At least it can tide me over until I can get some professional input.
Thank you for getting back to me so fast. No, 6 hrs. is all I am getting from *. it is very frustrating. all I keep being told for almost two months is that is all that is available. A friend of mine, who gave me your addy, really opened my eyes. I've been told if they(*) have noone they should give me a waiver. I feel like everyone is taking advantage of me. I heard your wife is very knowledgeable. Can you give me some insight please? I live in *. my son is only 2. the recommendations from * was a full day yr. round program for my son. due to his significant delays. I don't think I could not afford a lawyer. do I need to take the may to due process? are they trying to snowball me??? I had to wait 2 months for the early intervention assessment which was done Finally on friday, and I called everyone from * to * and NOONE was on my side. my ph. # is *. I just can't understand why it is so difficult especially since my son was diagnosed with autism AND mental retardation. and lost the few words he did have last year. I look forward from hearing from you.
I enjoyed going through your web page. My 4y-4m son is going through ABA (about 8 mo) + speech + school program and benefiting from it. Fortunately, the school is reasonably co-operative in co-ordinating the home and school program. Based on the progress made so far we feel that there is a light at the end of the tunnel. Since he has aquired some language in last six months (about equivalent to 1.5 yr) we are trying to expand his sphere of interaction to improve his play and social skills and improve his behavior in public. This our goal for next six months. So your two documents on play and social skills should be helpful!
I've been meaning to thank you for a long time. I'm in on your site tonight printing the Sumlin posts. I've been going thank you for a long time. Your web site is one of the addresses I give to parents. I thank all of you that paved the way before us. I could not have begun this without the information I found on the web.
We were the first home program to begin in * a year ago. For most of the last year, we were the only program. In the last few months many more families here in * have started. We now have 15 families doing full-time programs with two families doing part-time.
We're also in the process of setting up a FEAT chapter. We are all self-funded to this point and just gearing up for those battles. It is an awesome and frightening sight to see the State School Board gearing up to fight us.
Again, I thank you for all you've done.
*'s going to an ABA program run by * in *. It's a private group run by a specialist in the Lovas method. He goes after his regular schooling from 2 to 5 pm. daily at a cost of 16.00 per hour. As far as i know there is no provions in florida for the state paying for after school programs, if a satisfactory day program can be offered by the school system. being that i'm just enough time during the day to deal with a job to pay for the ABA training, devote time to my 8 yr. old "gifted" girl i really don't have the time or enegry to take on the school system to get my IEP changed to home schooling. * is not a very progressive state when it comes to it's children. I'v contacted parents, the state, and am now looking to SS to get finacial help. thanks
I am the mother of a child who has not yet been dx'd, but is most likely autistic , or PDD-NOS at the very least. He is high functioning but suffers in the area's of communication and language a great deal. He is 3 and is starting school soon, we have IEP this thursday. I have found your website a great help! I havent even finished it all yet!
There is one area that you may be able to help me in. What is your opinion of this situation. He will be in a VE class , varying exceptionabilites, not an autistim class and I am happy with that placement so far... but as far as related services I am still not satisfied it is the best for him. He will be seeing a speech teacher ( amount not yet determined) with 7 other children at a time! She will actually have another teacher with her, but still.. 2 to 7 ratio? My son is very hyper and just really zones out on everybody pretty much when it becomes too intense for him, stimulus and all. Too many toys or new situation.. things like that. Everyone keeps telling me that children learn from each other and mimic each other so this situation is actually beneficial. But my heart says.. BUT not for an autistic child! He already is good a mimicing.. he does that at home with brother and sister and video's! He needs somethign more and I just don't think he will get that in that kind of a situation.
I am waiting to hear back from * here in *, to get him evaluated there and perhaps we can get some services. .but that is still to come. What do you think? I still am also in the process of looking into ABA to see if that's for him, I don't even know anything about it. My son is not "very" autistic if that makes any sense... and he may not even be. But the more I read about it, the more I am convinced he is. He also meets the criteria on the DSMV IV, but that is just from my viewpoint ..not a professional's. Actually I think my view on it may be even more reliable than someone he doesnt know. Thanks for any info or advice you can give..
Thanks ever so much. Your site is really good. I am trying to help a lady with a 1-1/2 year old autistic boy, receiving ABA at family expense. I have forwarded your site URL to her.
Thank you for posting so much useful information at your website. If it is not too much trouble for you, I would be so grateful if you could point me to case histories of kids who improved with ABA intervention, so I can present the data to our IEP committee next week (Oct. 20).
We have the PDD-NOS diagnosis for my 4-year-old daughter. (Just got the diagnosis last May.) She is only receiving speech therapy 2x/week currently. She is very verbal (recently tested within 4 months of her chronological age) but has severe semantic-pragmatic difficulties and has not learned how to play with kids her age appropriately.
I figure as much hard data as I can present to the school district would perhaps avert a due process proceeding, and that we can get the district to fund the therapy wtihout court shenanigans.
Hello and how are you? My name is * and I have been working with children diagnosed with Autism (PDD's) for approx. 5-6 years, now. I am currently teaching in a public school in *. My class is part of a district-wide pilot program. We are utilizing the "ABA methodology" and are also mainstreaming our children for breakfast, lunch and recess. Eventually, as the program becomes more organized, we hope to mainstream the children for other activities. It's like we are working at both ends of the spectrum. ABA and mainstreaming. I personally feel that and ABA approach is extremely beneficial. When and how long it's done certainly is child dependent. Do you agree? I was happy to see that you opened up such and informative web site and wanted to tell you so. Sincerely,
Thanks for your response, and especialy your website and Me list. I will investigate them more extensively. I read your letter to the Brookline School Committee. I was stunned by the opposition you encountered and the anger/frustration you must have felt dealing with so called professionals who refuse to accept a therapy with results. Sorry for venting.
My wife and I are requesting a new IEP meeting for *. We hope to get some results. We are going to approach the "powers that be" respectfully and with hope, but also "preparing ammunition and circling the wagons". (why do all these war like expressions come to mind....)
My name is *, and I got this email address through Internet. I have a 4..4 years old son *, who was diagnosed as PDD last July. I have read your white page and felt that there is probably hope and future somewhere, somehow. So, please let me thank you first for your information and encouragement.
Will goes to * public school full day and currently has a one-on-one aid simply because he has a very hard time to follow instructions. At age of three, he was almost non-verbal, and now he can express most of requests, at lest at home. However, since this summer, he started to be a lot more aggressive than he had ever before in his life. He started to hit, to shovel, and even throw things at other people. Since he is physically a very big boy (he looks more like a 6 yr-old), I am really afraid that this new trends will put lots of negative effects on his future development.
Because of his behavior change, we started to think about ABA . So, my questions are: (1)Do you know any good ABA therapist in *? (2) In general, how do I find a one? (3) Is there a possibility to have ABA training in school as well as home since he has a one-on-one at school anyway? (4) Is there any chance to change his IEP during the middle of the school year?
Thank you very much for your time and consideration.
Thank you for your letter of 9/3. I will be going to the school this Friday for my daughter's IEP meeting. At which time, the mention of funding will be brought up. It has been a long road to have gotten to the point of where we are now... with ABA therapy. But she has done well and we still want to continue it. Thanks for your links, they are very informative. I really appreciate having a person out there who understands what we are/have gone through. Will keep you unpdated.
First of all, thank you for taking time to create your page and keep it so updated! It was a boost for me, as I stumbled upon it accidently and ended up printing a large portion of it!
I have a 4.5 yr old who was dx'd PDD-NOS, Asperger's, Autistic-Mild when he was 26 months old. He has been in an at home ABA program 30 hours per week for the past 20 months, administered by *. We have seen remarkable progress and wouldn't stop at this point for all the money in the world!
I began contacting others in my area running ABA, mostly through Melist, although it has gone beyond that now. We started a FEAT group for support almost a year ago with 5 families and we currently have 25 families and the group continues to grow. The local paper did an article on my son and our efforts and I think it is mostly through this exposure that so many parents with new dx's call us and ask us for help. I am always delighted to do what I can, but I feel discouraged when it becomes obvious just how far behind our area and schools are in effective treatment options.
I have an average of 2 "new" sets of parents contacting me on a bi-monthly basis and I am at a loss as to how to tell them to secure ABA from thier districts! How were you able to get your district to pay for a home program? I am receiving some help from our school system (30 hours of 1:1 DTT therapy delivered at home, 1 hr of 1:1 speech, $75 per hour/up to 4 hours per quarter for consultant's fees and $200 toward travel expenses incurred by the consultant on a quarterly basis), but the manner in which we were able to secure it is not going to be an option for most parents. Our son graduated out of Early Intervention services at age 3 with a program up and running. So what do I tell the parents of a 5 yr old who was just dx'd? They want to know what ammunition they can use, etc., but they haven't begun to scratch the surface of all the pertinent info on ABA! What do you suggest? Do you have other parents that you can tap into for info like this also? The parents here are all using ABA, but only a couple are within the same school district.
Again, thank you for your encouraging and enlightening page! I found the information available there useful and different from every other source I have been using! I will list it as a resource for future reference for all the other parents here in *.
Hi. I am the parent of a 4 yr old son, recently diagnosed with PDD. I am having great difficulty finding ABA providers in my area(*). My son is currently receiving speech therapy, but it is not enough. I realize it it critical to get him started on some type of program at his stage of development. Any information you could give me as to how to get started implementing an ABA program would be greatly appreciated. Thank you for your time.
Thanks so much for your response. It seems to have really hit home w/ my husband *. Maybe cuz it is a males perspecitve. I appreciate your candor. He is really thinking now that we should try and get him more help and forget about really getting anything we want from the school.
I think you are exactly right when you say that * does not learn from his peers. For some unknown reason I fear this is true. A good example of it is today he wanted me to play w/ him and his fisher price town toy. His younger sister begged to play but he wanted me to play w/ him. As I "played" I noticed that he was nto allowing me to do anything that I wanted. He was basically directing my play to his desires. It was not much fun and I thought... hmmm he does not really get the idea of what playing is all about.
HOW DO WE START A TRIAL PROGRAM??? Could you give us some really basic things to try and see if he responds? If he seems to benefit from this type of training we will dive into it (ABA) I know there are places where we can get this type of help. But I was not sure if he would benefit from this at all or not. IF we could try something fairly simple and get a good idea then I would know this is the direction we should be pursuing.
How do I get on the ME list and what is it?
It is so unfair how much we have to fight to get what is leagally our children's right to education. Not sure I am up to a fight (legal) w/ the school district. But if I knew what worked for * as far as learning I would definetly do it. Let me give you an example of what the psychologist said to do, in odrder to get him to learn. She said for him it would be setting up a pattern. He is very motivated w/ cars. She wanted him to draw a staright line and knew if she handed him the pencil and asked him to he would not. So she gave him a car and a strip of paper to roll the car down. After a few times of this she transitioned into the pencil and making the line. Does this sound at all like ABA training. She said that * would need a pattern to follow for everything he learned. ????? SOunds familiar???
Looking forward to your response.
Quite some time ago I emailed you asking if I could link to your page. Here is the result of several months of slowly building things up. It is quite different that yours. I hope you let me know what you think of it.
We've recently been heavily involved with a large group of parents here in * trying to get the local schools to adopt ABA methodology. It appears that we are making headway since yesterday some of our friends were able to get this programming for their son into his IEP. We personally are awaiting the results of a resolution conference concerning our son's IEP. The big problem now is that the district refuses to consider reimbursement of program costs that parents have incured up to date, unless we go to due process. Any ideas about reimbursement of costs incurred before the district changed its thinking?
To add insult to injury the therapists we have paid to train, and who have gained experience working with our children are now being hired by the district so that they are no longer available during working hours.
I looked up your web page. Lots of good information there. I am not sure if this is the direction we need to go. That is why I am so confused w/ so many dx's that apparently over lap we are not sure how to treat him. If we got a definite dx of pdd-nos or global delay or whatever we could atleast feel confident that we know what we need to treat. IF he indeed had some sort of brain damage during birth (that is causing his apraxia and sensory issues and global delay) would ABA help? His therapist feel he is very intelligent but his sensory issues are stifiling it. I tend to agree because this is easier to accept. It is so hard to decifer just how much he knows.
It is truly people like yourself who make the world a better place. I was so happy to find your homepage and explore it thoroughly. thank you so much! I have a five year old son who is beginning his second year at an early childhood rogram in our fast growing comunity in a suburb of *. I have requested, begged and pleated for more services. I have not yet digned the IEP from 1998 in hopes that the behavior mod plan will take affect. I was introduced to a man in June who was outsourced fromthe school to srite a behavior mod plan. He has visited my home once this summer to ask me what I wanted to accomlish. DUH! I hired advocated, attorneys and spent many endless nights writing and copying info on autism, lovaas, discrete trial training etc... I am stuck and wonder what letters did you write? what action did you have to take? and in what order? I guess I'am just not sure where to go. The school is like a yes person, they say yes * can have this and that and then it is never implemented. any advice would be much appreciated.
I discovered your web page a while ago, bookmarked it and just now got around to reading some of the material. I was most especially touched by your letter to the school district ("pain and wasted time"). Like you, our family is going through similarly trying circumstances. Our son is seven years old and was diagnosed as having mild Asperger's last February. We were blown away. All the signs were there, but I guess you just think your child will outgrow these odd behaviors. It's easy to blinded by their strengths, but difficult to miss the fact that they're not fitting in. Today we went to yet another draining IEP meeting, the result of which has left us feeling like in the end no one comes out the victor, most especially our son. We're feeling sad and confused, wondering if we are making the right decisions about his schooling. Whatever the outcome, we all have to live with it. I hope all is going well with your son. He's very lucky to have such loving, diligent parents. Sincerely,
My son at 19 mos. was diagnosed with PDD. He has just turned two, and he has had four months of what I'm finding to be minimum intervention. He started with two hours of speech, one hour of OT, and six hours of "floor time". This Sept. he will receive twelve hrs. floor time, five hrs. of group sessions at early intervention center, two hrs. speech and one hour of OT. At home there are four adults that also work at playing purposefully with goals. We will be incorporating a diet next week that will include taking an organic acid test (urine sample).
He has also been a member of two play groups (one I had to drop, because of scheduling) since five months old. He has been enrolled in Gymboree classes since the age of seven months. And this summer we included Kindermusic for tots. I consider these activities just as important as any other intervention program.
I am happy that * seems to be doing much better than even last month. He started with less than ten words and now has well over three hundred. The amount he doesn't comprehend is overwhelming; he is very good at labeling, forming words and just lately repeating last words in our sentences. He is a very focused child who can stay put for long periods of time. I had suggested some form of ABA two weeks ago. The difference between the two is the direction of the play: child directed and adult directed.
The group took this goal, and made it a reality. In the last two weeks and with less than three hours in ether week, the child realizes there is an answer for everything the adult is telling him to do. Although his answers are repeating the words of the therapist, doing the last motor skill accomplished, or just answering yea, in my eyes he understands the gist of the drill. The verbal section already seems too easy. So yes, I and my husband will be going back to see if we can get some formal ABA. Your experience seems so pro ABA and with good reason. Why doesn't every intervention program utilize this? What are the cons? My group spoke of *; do you know anything about it? Is this the place you had such a hard time with or was it incidental teaching methods that bothered you? What are the names of the places you were so unhappy with? I really don't need to be making the same mistakes. I'll be adding ABA and hopefully will be able to keep all that is already in place.
What I don't like about floor time is that it is too hard to keep track of substantial progress and therefore, if it isn't being reinforced, will it be lost over time? Within the last week he has taken a one-step command and followed it. Tonight he ran towards the kitchen, saw us, and turned to run the other direction. Dad yelled to him "do you want food to eat?" He then once again turned around with a great big grin and ran towards us. This made me cry, I was so proud of him.
We've been doing this for four months and am overwhelmed with the information. Overwhelmed with a feeling of am I wasting time with this therapy or that. The OT person is awesome and * naturally interacts with her. Now I've complained that *'s large motor skills seem to need work, and they are telling me * (OT) will add this processing skill to her one hour a week. Won't the areas she has been working on regress? My child is "mild" and not far behind his developmental age. Shouldn't we work really hard so that he can catch up and then not need that therapy? Where do I go to contract people on my own? I'm afraid if I tell the center I will pay for some services that they won't add anymore, because their impression will be that I can pay for it.
I want to thank you for all the information you put out here on the inter net for me. I was duly impressed by your courageousness and perseverance. You are a great advocate not only for your son but for mine and others.
* is an only child; it took years to conceive him, and we want the child within to come play with us!
I am also a father of a 2 1/2 year child with autism. My daughter, *, was diagnosed about 8 months ago, and I am sure that my wife and I have been dealing with it rather well, for * was our first child.
We have found a special school through * University called *, which has regular children as well as Autistic children together interacting. The results have been wonderful, and * has just been changing and growing every day.
One question that I have. We have had the assistance of Early Intervention, as well as having the Katie Beckett waiver done through Medicaid. My question is, are there any other financial resources that we can get to help continue our daughters special education. This particular program, once the Early Intervention cancels (at the age of three) will cost approx. $1,200.00 a month, which is a bit steep and barely manageable for my salary. Since my wife spends so much time dealing with my daughter's special needs, there is no time for her to work.
We have found very little so far, and since I was Browsing the Web, I saw your page and decided to write to you.
I truly admire the effort that you have put into this, qand your generosity to reach out to other men as myself who have suffered this tradgedy. As I am sure that you feel the way I do, One day at a time, and make our children's lifer as full adn happy as possible.
Please feel free to write back to me,
I am a mother of a 2.8 yr old with autism. He is in an ABA program for 4 months now making amazing progress. Yesterday we caught him doing his first pretend play with a castle and a playmobil man, and were thrilled. I am trying to put up a bunch of web pages to educate parents in * about ABA and autism in general. I want to translate some of your material into * (at night when my kids are sleeping) and reference your pages. This message is intended to ask your permission. Good luck and full recovery for your child.
* doesn't offer any ABA help. At least not in our county. We are doing this strictly on our own. There are no ABA centers close by so that's why we will have to fly one in from NJ.
You mentioned in your message that you moved... Forgive me, because I am very new at this, but are there some states that provide ABA at no cost to the family? We have our house on the market right now. We decided shortly after *' diagnosis and his referral for ABA that selling the house was the best we could do to fund his program. I don't know if it would be practical to move (because we have family in * and right now I NEED family) but we are looking at all options now.
Thank you for responding to my post on the autism list. Your email was interesting, and I've heard and read alot about ABA. I think it definitely has it's merits but everything I have read says that it is important to start this type of program before the age of 5 years. My son is 7 years and 7 months old. Is it possible to start--and have measurable progress--since my child is this age?? I am reading through your website now, but I wanted to go ahead and respond to your email and get your thoughts on this. In trying to do something like this please bear in mind a few points: I am a single mom, I have VERY limited resources financially speaking, I do not have any support systems where I am now. I am strongly considering a move to the * area soon, there I would have my mother (who is and has always been very supportive) close by. I live in the * area now. I also have a four-year-old daughter at home. My ex-husband nor his family would be helpful at all with a program of this sort. Bearing in mind all of the above obstacles, if you would still suggest an ABA program for my son by all means please point me in the right direction.
reat info on your web site. I have a 2.9 son, *, diagnosed with autism 2 months ago. We are waiting for our intake interview with *. Do you know anything about their consultants?
Any ideas for funding? Our insurance won't cover it because it is "educational" and we'll have a fight getting our school district to agree that it is appropriate. Not that we mind fighting for our son, but it takes time and meanwhile we wait... I have talked to a mother in Ohio that is using volunteers for her therapists but it doesn't sound like they are very reliable. We've also applied for the new medicaid waiver but have been told that autism is low on their list. Besides, the waiver doesn't cover ABA.
Thanks for the information on the site. If you get a chance, please respond!
I am a lic. Speech pathologist who has been trained with a Lovass consultant for the past year. I am currently working with a 4 yr. old little boy diagnosed with PDD. He is doing quite well and the team is very enthusiastic about this approach. This child's parents have been paying for this consultant out of their pocket. ( the therapy is being reimbursed by the county but they claim they are unable to pay for the consultant and this family's insurance denied them coverage for this expense). As you know the cost of a consultant is prohibitive. I have talked to our local representatives in the office of mental retardation and the association for retarded citizens (ARC) without little success. Are you aware of a way of getting part or all of these expenses covered? Any advice would be greatly appreciated. Sincerely,
I may sound confusing cause I get discouraged sometimes. It is difficult scheduling therapists, etc. Especially if they don't show, leave, etc. We are BARELY getting 25 hours a week. I want to do 40 just like Lovaas! With the exception of the few people I'm involved with (and they moved here from NC) - people are ignorant around here to ABA. I need to recruit and be able to pay therapists enough so they will stay and get the same urgency in their spirit like we have to get results and know that it will pay off! thanks for listening.
Our schools here are only offering our little son 10 hrs a week in special education. We are still fighting to make sure our daughter, who turns five in a month, will attend kindergarten. But we are on untrodden paths "up here", five autistic children in the three county area...and the FEAT group putting out newletters, etc. I am desperately done with reading newsletters...I want my SON and Daughter to read newsletters. Much talk and teas and fetes and various special days. Our son won a blue ribbon for an art exhibition in * that he had'nt even attended. The angel boy cannot even hold a crayon, and the goop of fingerpainting on his hands makes him agitated. Evidently these are things sent home to buoy up the parents. Well, as you see, it's dismal...these first steps, and we are clearly in the wrong area for more rigorous, more, much more hours of help. We, all of us, shall let you know of our progress...and certainly our destination. How do I enter the ME LIST? I have finally got hold of The Me Book by Lovaas. many thanks for your time, and I sure wish I could see YOUR angel-boy...I've only met two other autistic children aside from my own...and their progress is minimal.
I would give my life to pull my son and daughter out of their world...and I would give anything to, just for one day,to enter their world. My three year old son is autistic...and has yet to speak a word. My daughter is nearly five...and has been difficult to diagnose...an actual salad of aspergers', pdd, and autism. Most of their life was spent in the *, where my husband and I were stationed; no city, no pressure, not many other children to compare ours to or be compared with. We were stationed at * last year...yes, there was a problem...and we found out what it was... in the meantime had another baby, a little boy...and we have a fourteen year old son also. My husband is now in * on a 4 month tour of duty...and I have completed, and won, an income for my autistic son, *. SSI. Good news? Not so sure. Where do I REALLY start? I am responsible for his success, his future, his comfort, Not a night has passed that I do not go to bed literally shuddering with fear, and I ALWAYS go back into the children's room when they are asleep...not just to check on them, but to whisper to my little boy...Mama, I love you, sweetling...angel...ANYTHING...hoping, somehow, unconciously, he'll say it. I have been aware that when I say, "Let me hear your voice," that is ALL I may get. The lack of comprehension, concepts...etc...I dread each day, Richard. My daughter, *, can speak, but she's distinctly behind...and becomes angry and anxious if she does'nt understand what you are saying,or if we do not understand her. My son will simply look away..he is also very smiling and cheerful and huggable. We attribute this to the fact that his * toddler years were stress free...we never pushed him, only played with him, loved him completely, and made adjustments to his *-ness when necessary. We want the children to be happy and comfortable....the idea that my son may never be able to tell me "Whats' wrong" when he sobs at night tears at my heart. Is there a waiting list for Lovaas? I also read Catherine Maurice's book, "Let me hear your voice"... those children could'nt have been autistic, could they? At this point I WOULD settle for just the voice...but I know that will not suffice for my son...he needs to communicate. Yes, I want a guarantee and I'm desperate. ...My little son seems happy most of the time, in his own world...and our home is his world...I know that cannot last forever. We planned and I became pregnant with our fourth child before we knew about *'s disorder. Would we have gone ahead had we known? I like to think so..I believe the statistic's are in our favor, but I watch my eight month old son for signs...well, you can imagine how it is. If we could be back in the *..and * could live comfortably AS HE IS...I would be content.. but I can SEE it now. More obvious confusion and fear...I feel that we have one shot at saving him, helping him, however it's put...please respond if you have time. I have weakened in all my earlier resolves...I am too frightened to make the decision on what program, therapy, etc. and can we simply let him be? Is it possible that he might come round? I hear, and read the chances (A treatment plan vs. nothing) are about 50 per cent successful in the social manner...to get by, etc. Does the Lovaas exceed the To Get By.? Again, please respond...I am very new in this new world of my children's, and am still angry and grieving..I cannot even imagine the hell my husband, so far away, is going through...but it has kept him in better perspective. He'd give anything just to see and hold them again. I guess I'm writing to you because I feel deeply drained and helpless. I know there are things to do, plans to initiate, but my thoughts, feelings etc, seem frozen..it's a delicate problem. will he regress? will he become agitated? more frightened? When in doubt do nothing seems to be my prop right now...but I'm not comfortable with that either.
thank you for listening ...p.s. and please give my e mail address to everyone you know who has used the Lovaas...including, if you know them, perhaps, those who did not have as much success. And I forgot to tell you how happy I am that your son is recovering. I pray you may convey the same sentiment to me someday.
I have been reading your webpages and find them very helpful. Sounds like your son is doing great! Congratulations! Reading your story gives me a great deal of hope for a bright future for my six year old son, *, who is diagnosed as high functioning PDD.
* is in a regular classroom with some one on one support (3 hours per day). He also gets 2 hours of speech therapy a week. My husband * and I do a lot of one on one teaching at home (about 10 hours a week). Could you tell me how you go about designing your home program? That is, do you follow a step by step program? If so, where can I get this? We do not have a set program, we work with the teachers and therapist on the same things being done in school and on social and conversation skills.
Also, I woould like to set up playdates for * with other kids from his class, but so far have had only two. Do you suggest explaining something about the diagnosis to the parents of the other child? So far we haven't told any other parents, fearing that it will label our child, and they might not understand. What is your experience with this?
Thanks for listening! Any suggestions would be very much appreciated.
Just wanted to say thank you for a very informative site. It was the most straight-forward and articulate description of ABA/discrete trial I have found - perfect for passing along to grandparents and friends to help them better understand what my 27 month old son, *, is going through.
I would love to talk to you about your experiences. * was diagnosed in late February, shortly after his 2nd birthday. No "real" surprise, we knew something was up....no words, no recognition of simple instructions, hand flapping when excited, and "tracking" (the most disturbing to me) - a visual stim whereby * gets real close to an object (preferably a car or train, but he will settle for a crayon, pencil, hairbrush, etc!!) and watches it intensely as he moves it back and forth in front of his eyes (and past the line of vision), or simply straight up and down!
I through myself into his cause (thank God I am only part-time at *n - a choice made before *' diagnosis - * has a 4 1/2 yr. old sister) and * has been very understanding (I have been here * yrs) and knew ABA was the way to go. I consider myself quite intelligent, but it took me awhile to realize I could not simply write a check and make a home-program happen. I could have gotten *'s outreach (it is 10 minutes from my home), but ended up getting a teacher from another prominent school for autistic children to run my program. * started about 5 weeks ago with 5-7 hours a week (1 hr sessions) and his sessions are now 1 1/2 hrs. (we hope to build to 2) and my team of trainers/therapists/tutors/teachers (what do we call them?) will be 5-6 by end June (another teacher from my coordinator's school, a college student that has done ABA for 15 months, a recent college grad that is working at another, not so great, autistic program, and a local * school teacher that has had some ABA training. I hope to get up to 24 hours by July. * also goes to *t and Early-Intervention (a joke in * - 2 hrs a week) has offered him a kind of play/development session.
Anyway, I have written more than I expected. If you have some free time (Ha!) would you please give me a call. I plan to do something similar to what you have done - but with more of a local flair - once the dust settles. I would love to hear about your son's early days, if you bothered with any of the diet tests or organic acid test, and any other tips you may be able to offer. We have gone to conferences (I saw Stanley Greenspan speak last week) and have joined a parent support group (we changed groups, the first we attended was too depressing, the other was full of laughing while being informative). I look forward to speaking with you.
Many thanks in advance,
Just read your website and thouroughly enjoyed it. I am the President of *, and I would like your permission to include parts of your FAQ into the current FAQ we distribute to area medical professionals and parents of newly diagnosed children. I am always looking for ways to improve our FAQ, but being stretched so thin, it is easier for me to ask permission & plaigiarize than do it from scratch! I would also like to add alink to your site from my site.
Before much more time passes, I want to say thanks for putting your superb Bridget notes on the list, as well as these thoughts about reinforcers. I facilitate a tiny but intense--and very needy, as our kids are more LF than HF--group here in *, and as the only one able to get away that day to drive to see Bridget, I want to share more than my scruffy little annotations on the margins of her handout. May I duplicate your notes and give them to the 5 other parents in my group, as well as to the "autistic dad" who hails from *, who went with me to the BT talk? He knows his son will benefit greatly from the techniques Bridget described. (Wow--was she helpful!) Of course, if you say yes, credit to you as author will be clearly noted. (And if yes, a double thank-you!)
As for + reinforcers, for my daughter, 13, we use break time with magazines such as Teen, Seventeen, and anything alse featuring Leonardo diCaprio, or the Delia's catalog; break time swinging on her new, big outdoor swings; words of praise--which she now understands and values; cheers and applause; hugs and kisses (OK for parents, family members, teachers, and respite care providers, but NOT for random others!); singing to her or making some foolish "mouth noises" she enjoys making herself and enjoys when we make in response to her initiations; and--get this--MORE of certain types of trials! We know the program is working when the trials themselves reinforce further learning!
I happended to visit your ABA homepage and have found that the information is very helpful for me.
My son, *, is now 5 and 1/6 years old. He has been assessed recently with the conclusion that he has moderate autism, or PDD. Like your son, he is intelligent in the aspents other than language and communication. Before 2, he started to play computer games. Soon after that, he learned to write alphabet/numbers, draw pictures and paint them. He's a quick learner for all the mechanic/electronic devices. On the other hand, he's quite disabled and have behavior/emational problems. He's hyperactive, not able to establish peer relationships with other children (though he may interact with adults).
Now * is placed in a preschool program in a public school, four days a week, 2 and 1/2 hours per day, including 60 minutes' speech therapy and 30 minutes's occupational therapy each week. To be worse, his teacher went into labor 3 weeks ahead, and there is no qualified teacher to take over (the teaching assistants are now the substitutes). Speech therapy has never been started, though it is written into the IEP, because the district is short of the speech/language clinicians.
From your story, I realise that I can ask the district to do something to change the situation. This is *'s right to have intensive intervention. I would like to borrow some of your ideas about how to negociate with the school district and what kind of services I can insist. Say, if I ask for one-on-one teaching at my home for * for 10 hours or more per week, will the district think I am cracy while they are short of the qualified teachers and other parents don't challenge them? I've also seen a sample letter by Damian Porcari which requires a computer and software as teaching tools. Do you know any successful examples for such a requirement?
I concern very about my son's future, and believe that it is a critical time for him, since he's past 5 years old. Please give me your advise so I may be able to rescue * while I am in a poor financial situation.
thank you very much for your articles and looking forward to your reply.
Your prompt reply to my e-mail was very much appreciated. You also forwarded a response from * - is he a parent, or what is his interest. I am right now in a home i am having alot of trouble selling so things are kind of up in the air with that, but moving is an option we could consider.
Another interest was exactly how is ABA done as i am not really clear on that. That is what i would like to talk to you about as a parent who has lived it and seen the positive response this can have.
Thank you so much, its really good to know people care. I will be in touch. You say my little girl is lucky to have a Mom like me-I wish i always felt good about my place in this, I never feel like i am doing enough. You sir seemed to work miracles for you son and you seem to be an wonderful father and advocate, I salute you.
Again I thank you,
When I first heard of Lovaas I was VERY interested. Then the more I read I tried to figure out HOW I COULD IMPLEMENT IT?
I have been convinced that I would need to quit my job. (go on welfare/unemployment) work part time etc. This is actually feasible as I have cut my living expenses considerably.
1. Beg, borrow, steal Lovaas training materials.
2. Recruit college students or inmates (I live in a town with three colleges and a state prison). Just kidding about the inmates.
3. Liason between school and home a lot, forcing the educational system to adapt to ABA.
Am I missing something? Could a single parent lead an in home treatment TEAM while he's at work? I don't hate my job and neither is my ego tied to it that I would disintegrate without it. I've been raised that men work.
Let me brag about my son a bit. I love him greatly he has a very loveable personality. He is gentle and even kind. He laughs a lot and will now play with other children. At McDonalds playland there are times when the other parents don't notice he's different. He loves playing on the computer.
I fear that these positives will eventually give way to the aggressive behaviour as he becomes more frustrated and isolated from his peers. We have major problems on the horizon.
1. Potty training - he will stand and go pee, but is fearful of sitting. Seems to have lazy bowels or is holding it. No "good" poops.
2. Teeth brushing.
3. Bathing - seems frightened of OUR bathroom. Other bathrooms he's OK with. This just started after we moved.
4. Eating - very limited in diet. Loves yogurt, applesauce, frenchfries, chips, juice, soy milk. I believe he is lactose intolerant and feed him only yogurt with live acidopholus cultures.
We made it through fecal smearing and eating (diaper snacking?) While changing his diaper she would make a big deal if his hand went down there. Then one day it went down there and then to his mouth. She of course had a cute tantrum over it. I got rid of that behaviour with extinguishment. Ignored and redirected it, but neven went, "Oh *!!!!!!!! No nononononononon!!!! Icky puyee icky puyeeee!!!!!"
Everything I've read suggests that I take the next 2 years off and work with my son. Hell should've done it 2 1/2 years ago.
What do you think? I'm not asking your permission to quit my job :-) just this, How much of my time during work hours (when people can be reached) would be needed to lead an ABA team. I believe * chances of recovery are still good even with this late start.
I have been in touch with the local groups. Married women who tell about their full time efforts and the rewards for such. Not much help if any.
I'm not very knowleable about the welfare system / unemployment what will they do if I just quit my job and cry help?
We are currently in * state and relocating to * in 1 1/2 months. We have an ABA program being paid for by * HMO insurance and know that * is much different from our state. My question is, do you know how I could network with people in * to determine where we should look for a house to live, strictly our major concern is the best services for our 3 1/2 year old autistic boy. There are so many services available in dozens of areas and regional centers and I have talked to probably 80 people in the area re services and they keep saying get your house then you will know where you stand for services. This is extremely frustrating, because we would live in a dog house if we KNEW they had excellent school services, regional services, private insurance services, etc. I have seen the RECOVERY ZONE on the web and it is very full of information, but there is no search map or something of that sort that shows where you could find the most resources for an autistic child regarding ABA services. Forgive me for being so wordy, thank you in advance for any help that you may have or referral to web site or bulletin board or anything. Sincerely,
a grateful grandmother justs wants to say what a service you provided us with your info on PDD/Autism. 9 mos. ago my 2 1/2 year old grandson was dx with PDD one month after your letter appeared in the Boston Globe's editorial page. Prior to that we hadn't a clue to what was wrong with him (neither did Early Intervention where he had been going for 6 months....some professionals!) From your letter I got in touch with the TAP Org who sent ma a brochure with sx and a personal note acknowledging my pain and also advice on enrolling him in ABA therapy. One month later he was started in a program due the help of a neighbor whose own son, also with PDD, was enrolled in a ABA therapy program 1 1/2 years after dx. We benefitted greatly from their expertise. My grandson is doing well but still has a way to go but you....you were there first. I can never thank you enough! God bless you for turning your pain into helping others. You will always be in my prayers...and Alex, too. If I don't send this now I never will and I did want to acknowledge your wonderful work.
Thank you for your quick reply! I've had my nose in Catherine Maurice's manual, Behavioral Intervention for Young Children With Autism ever since the package arrived last Friday. (I also sent away for a videotape documenting the history and basic tenets of the Lovaas program. I found it more depressing and panic-provoking than encouraging, only because a lot of the footage was taped back in the 60's when this whole autism thing was looked upon so differently and so many children never got the help they needed.) It's so scary. I'm still scared out of my mind because I know that I need to do something immediately and I panic thinking maybe I've done * additional harm in not discovering how to really help him until now. And I know that I still have no guarantee with ABA and the final outcome but I pray this method of intervention is going to make all the difference.
I went into *'s classroom yesterday and observed him "working" with his paraprofessional in the mainstream classroom along with his 19 peers all morning. My belief that a radical change is overdue was confirmed. As the main teacher explained the upcoming lesson to the children, all eyes and ears were on her, except for *'. He sat in the front row, huddled with his paraprofessional who was writing him notes to keep him seated and quiet. He ultimately finished the lesson, which consisted of making a little book about blue balloons (the text was already typed out for them; they just had to draw, color, cut and paste to finish their books). Basically * was ushered through the project, his paraprofessional struggling with him constantly to keep his behavior in check (occasional outbursts, pinching...) A couple of times he had to leave the room for a "break". This is generally how his whole day goes, week in and week out. I hate to even send him to school now, until I get the necessary changes in place. I hope to have a new program in place by the end of the week (at least an imperfected one). I can't bear to think of him struggling and rebelling without the words to tell anyone why he's so unhappy. My poor baby.
I've been parroting the same phrase since last year: "* does not have the language/communication skills/ability to understand and use language himself to cope in the classroom and be successful. We have to bring his language up to speed." Last year I thought somehow that we were doing okay. The special needs coordinator was always there for me, open to my suggestions and always seemingly working toward an improved program. * had a full-time paraprofessional (mainly because when he began kindergarten I was afraid he would slip out the door and no one would notice and of course he needed someone to help him through the day) and we scheduled "4 units" of speech/language therapy for him and "2 units" of O.T. per week. I thought I was doing right by him at the time. I just didn't know any better and I didn't know if there was more information (about the type of program my son should have) out there or how to go about looking for it. I knew of a special PDD program at another school, but thought (and was encouraged to believe) that he'd be better off with the mainstream inclusion program where his peers would be more positive role models. I said, "Okay, as long as * gets what he needs..."
Why did it take me so long to figure out what his needs are? The poor kid NEEDS to learn how to communicate. His ability to understand verbal language and to make his own sentences is probably that of a three year old. Somehow the teachers and other educators made me believe that he was making real progress and that the language would come in this setting. But now when I look back, he wasn't getting any intensive help for his problem. Everyone (including myself) has been trying to cure his inappropriate behaviors (i.e., time-outs for screaming, pinching, etc., telling him over and over, "first finish work, then you may read the book", etc.) rather than attacking the root of the problem (working intensively to strengthen his language/communication skills) which is the foundation for everything else. To complicate matters, we had a hard time keeping the same paraprofessional and an even more difficult time keeping a language pathologist in place.
How can we expect him to build anything upon a foundation (his ability to use language) which is practically non-existent? When I tried to explain my new point of view yesterday after observing * in the classroom, the head of the special needs team, (who has always been most cooperative and I believe sincerely interested in *'s needs) told me that she understood what I was saying and said that we both want the same thing for *. She continues to feel, however, (although I must speak to her again today or tomorrow, as am finally beginning to see the light on how I think his program should be modified and I'd like to run this past you, Richard and Jennifer...) that "* is a bright little boy and the language will come if we modify each and every worksheet that he does so that it's presented in a way which makes sense to him." I think that is the WRONG approach. How long can we go on modifying worksheets? What about his inability to understand the teacher's instructions, remarks, chats, etc. as well as any attempted verbal communication from anyone? It's like wanting to keep him moving along on crutches, no matter what, rather than taking care of his wounded leg so that later, he can move along, even run, without crutches.
So, I will call for a radical modification in his program. (I would like to keep him in the same school (if possible) were he has now established some ties and is familiar with people and things about the school.) But I firmly believe that he needs to be removed from the classroom for the majority of the day, to do one-on-one sessions (as outlined in C. Maurice's manual) to build his language base. I was thinking we could let him rejoin the class for activities such as recess, art, show and tell, gym, music, computer, lunch where there's less formal, verbal, instruction and where he would stand to gain from social interaction with his peers. But he would have (in this case scenario) close to 4 hours of language therapy per day (plus additional lessons I could do at home). Of course we would schedule breaks and try to integrate teaching games and such so as not to have this become unpleasant for *. Also, I have to see if the paraprofessional feels that she is "equipped" (with the necessary desire, common sense, stamina,...and needed psychological tools) to take on this new program with *. Or would I be better off looking for a truly trained professional or college student? (The latter would probably be a better idea anyway, given that his current paraprofessional is not sure where her personal situation will lead her a couple months from now.)
Jennifer and Richard, can you give me some guidance and pointers on getting started? Maybe you've learned some important things through trial and error or could pass on some information that may save me some time and/or headaches.
If it's easier to call, please do!
Thanks so much,
P.S. : I was thinking yesterday how scary it is to think that * has no real advocate if it's not myself. He cannot speak for himself and if I left his cirriculum totally in the hands of his current educators... God, I hate to think about it.
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