ABA Resources for Recovery from Autism/PDD/Hyperlexia

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How can I get help for my child?

I have received hundreds of messages from parents (mostly Moms) with recently diagnosed children (mostly boys), asking how to get started - in particular, how to get their school system to write and implement an effective IEP, rather than automatically putting their child in whatever program happens to be most convenient. I have replied, hundreds of times. If you are one of those parents, I am always happy to answer any question, but this "form letter" might help you get started.

Dear Mr. Saffran,

Thank you for your very insightful letter regarding your son. (It was attached to REACH's website.) How lucky he is to have parents who are so committed to his well being.

I'm writing to you because recently, our son * was diagnosed with PDD and "probably" a non verbal learning disability. After a year and a half of evaluations, recommendations and meetings with the school system, I am finally relieved to have a diagnosis. * is in a regular kindergarten. He has an IEP and receives a special education teacher 2xweek. OT and PT 1Xweekly. My husband and I pay privately for social skills and OT outside of school.

I have not found the school system to be accommodating to *'s particular needs. At his transition meeting I wrote a summary of *'s strengths, weaknesses and what I felt he needed in school to succeed. I wanted a full day program and a shared aide. I was told "we don't do that". I was hoping that you could give me any advice on how best to deal with a school system which does not seem to be interested in children who have challenging learning needs.

I realize I have never met you but I'm hoping that since you have been down this long frustrating path, you might have some information which would be extremely helpful.

Thank you in advance,

Informed Dedicated Parent

Dear Parent,

Thanks for writing. I am sorry to hear that you, like many other parents, are getting the runaround from your school system, instead of the help that your son needs and by law is entitled to. Here's where I think you need to start.

First, you have to be certain in your heart what kind of program your son needs. As certain as possible, anyway. As part of negotiations, you may ask for more than you think he needs, but you want to have a clear idea what is absolutely necessary and worth fighting to the last breath for, rather than bargaining away.

Most parents get that clarity from a really good professional evaluation, almost always an independent one, rather than the school's. I usually recommend that parents use a good neuropsychologist. You can find one by getting referrals from other local families. Though you may not start out decided that he needs an ABA program, you do want to use an evaluator who really understands ABA and autism. You will get clear and detailed recommendations for his programming (services, IEP goals), whether that's an ABA program or not. My Web site has links to help you find an evaluator.

Sometimes the words "behavioral intervention program" on a piece of paper have little meaning to a parent. If you can possibly arrange it, and you haven't done so already, you might try finding someone to give your child a few hours of ABA-style instruction to see how he responds. If he does well, if you see that working better than other forms of instruction or "therapy," then that experience will greatly help you decide on the level and type of services to ask for, as well as help you formulate important IEP goals.

The evaluation has another essential role. After you decide what your son needs, you have to convince the school to put that on his IEP. That will NEVER happen solely on your say-so. You MUST have a written professional opinion, something that would stand up in court, should you have to go to a hearing.

Second, you need to become fluent in special education regulations and law (those which apply to your son). You are going to be in meetings, writing letters, and talking on the phone, and you need to know what you can and should ask for, what the timelines are, who has the authority to decide what, be able to recognize when you are legally or illegally being stonewalled, what options exist besides those presented by the school - and much more. Use the special ed links in my Web site. Start with Wrightslaw. I would buy their book as a reference (I will send you one if you can't afford it).

One thing you will learn to do is to keep chronological records of every contact with your school (or any other professional): letters to and from, phone calls, and meeting notes. Who said what when can turn out to be surprisingly important.

That's a lot to do when you are busy full time raising a disabled child. You may want to find an educational advocate to assist you at first, or maybe always. An advocate will attend IEP meetings, help you plan or write letters and prepare for meetings, and review and suggest the educational options to consider for your son (though he will not recommend specific program or therapy choices).

An advocate is NOT the same as an attorney, and cannot represent your child in a hearing. If you believe you are headed for a hearing, or (more likely) need to make the school believe you are 100% prepared to go to and prevail at a hearing, you may want to start with an attorney instead. That is usually much more expensive. You are not required to have an attorney to go to a hearing, but most people choose to use one. Again, my Web site has listings for educational advocates and attorneys.

Third, you may need to start finding your son's educational resources, if the school is not willing or able to do so soon enough. If you believe, for example, that he needs thirty hours of "ABA programming" a week, you will not want to wait nine months for that to start. He needs it now. If you have the resources to do so, that means finding an available consultant, finding part-time tutors ("therapists"), hiring and training them, and getting some good programming going while your IEP dispute gets resolved. If you do this, you will first inform the school in writing of your IEP rejection and alternate programming plans, along with your intent to seek reimbursement once your IEP request prevails. The right to reimbursement is in the sped statutes.

You will also want to think about the suitability of a private school placement. If there are private schools near you, you may want to visit one or two on the advice of your evaluator, or on the recommendation of other parents with children similar to your own. Be aware that many schools require approval from your special education administrator before they allow you to visit.

Fourth (uh-oh), you need to keep networking and looking for local families as much as possible. Chances are there is someone - or several people - who has been through this already. Again, use the support groups and mail list links in my site to help find other parents.

That's enough for now! Please let me know if you need help finding any of this information or have any other questions.

Best wishes,


See also How Can I Get the School to Provide an Appropriate Program? (Wrightslaw)

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This document is rsaffran.tripod.com/advice.html, updated Sunday, 09-Sep-2012 20:53:14 EDT

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