Your child has just received an ASD diagnosis. Now what? In addition to all your other roles, you are now your child’s Education Advocate. Because of the wide spectrum of what autism can look like, a diagnosis doesn’t always happen during the early years. You could get there early when your toddler begins to lose the language he/she had already acquired. Then again, maybe your child had a variety of seemingly unrelated issues like attention deficit hyperactivity disorder, sensory integration issues, delayed language development, obsessive compulsive disorder, intestinal or diet issues, just to name a few, and slowly, someone thought to look deeper and now your child is school age.
If your child’s issues are affecting his education, you have the right under the Federal Special Education Law, IDEIA (Individuals with Disabilities Education Improvement Act of 2004, commonly referred to as IDEA, as it was called prior to 2004), to have your child fully evaluated by the school district to determine if there is a disability and if the disability is impacting your child’s ability to be educated.
Rule #1: Parents Need to Be Educated Consumers
It will be up to you to know and understand what your and your child’s rights are under the Federal Special Education Law, IDEIA. You will need to learn how to speak the language. If you are unsure about your ability to do this or simply don’t have the time, then you will need to find a qualified Education Advocate to guide you. You should not expect the School District to educate you as this is not their responsibility. The more you avail yourself of responsible organizations and agencies that provide education advocacy services and the more proficient you become in the language of special education, the stronger you will be in helping to craft a good school experience for your child. Student Advocacy’s free publication, 101 Answers: Getting Help at School for Your Child with a Disability can help (www.studentadvocacy.net/wp-content/uploads/2010/11/STU122_Book_English_Web.pdf).
Rule #2: Good Does Not Mean Best
The first thing to learn about IDEIA is that your child is entitled to appropriate services. That does not mean best. And while services that are “based on peer-reviewed research” are the ones you should expect, you do not get to dictate which ones you want. And here in is the dilemma you (and many other parents) might face. You will hear about all sorts of therapies and ideas through your network of contacts, but school districts don’t have to provide them. Parents should work with their school districts to understand what can be provided and learn to advocate for research-based services.
Rule #3: Quality Evaluations
While your child is entitled to an evaluation, at no cost to you, the sad reality is there is a huge disparity in the quality of the evaluations.
If your school district was the first to identify autism in your child, then congratulations on receiving some potentially beneficial information in the evaluation. However, if your child has a multitude of issues as mentioned earlier and no one at the school has thought to do a screening for autism, your advocacy skills will need to be honed further. How can anyone plan a quality program for an autistic child if no one has thought to consider the possibility of autism? There are a variety of ways to go about this depending on your resources. You could get a private evaluation from a competent professional who specializes in this field and who has experience in writing reports for educational planning. Or, if you don’t agree with the school district’s evaluation you could exercise your rights under IDEA and request an independent evaluation. Either way, the goal is to obtain quality information about who your child is as a learner and some good strategies on how to help him/her learn.
Rule #4: Identify
Make sure that you understand the documents and letters you receive from the School District. Understand the different parts of an IEP (Individualized Education Program) document. Always fully understand the nature/purpose/title/agenda of any meeting that is scheduled. The rules for a Committee on Special Education meeting (CSE) are prescribed by law and are different from a team meeting. You can only be prepared to fully participate at a meeting for your child if you know what the meeting is being called and the purpose of such a meeting. If you are not sure about the purpose of a meeting, call the person who sent the letter and ask before the meeting.
Rule #5: Put It in Writing
Always take notes. Be an active listener as this is your opportunity to hear what everyone is saying about your child. There isn’t much time so best to save your personal stories for a less formal venue. Confirm your understanding on what is being agreed to at any meeting you attend. If it’s a CSE meeting and an IEP is being developed, make sure you understand what will be written into the IEP about your child’s strengths and weaknesses. Ask to see a draft at the meeting. Contribute to what is written about your child so that it sounds like the kind of learner your child is. His/her educational needs must be apparent to any teacher that reads the IEP.
Sum up your understanding of what transpired at the meeting and the agreements reached and send it to the school district. A new IEP must always be sent to you after each CSE meeting. When you receive the IEP make sure it matches your expectations and agreements reached. Mistakes do happen. Call and follow up with a letter immediately should you discover one.
Rule #6: You Are Not Done Yet
There will be an IEP written and available by the first day of school. That is the law. You will receive it when it has been finalized and ultimately approved by the School Board. Don’t assume all your child’s teachers have read it by the first day of school. If there are issues that need to be communicated to the teacher, do so in a personal letter that introduces who your child is. Providing a copy of the IEP with the letter won’t hurt and might even be appreciated. Be proactive in your involvement with the school and parent committees, if you can, as this is the best way to meet other parents, share information, get to know the staff and know firsthand what is happening in your child’s school. Teachers are busy people too.
Rule #7: Don’t Panic
Nothing is working. If you are lucky, this may never happen to you, but chances are at some point you will go through a range of emotions because of something the school did or did not do and it looks like the worst school year ever. And since you have a child with ASD, time is of the essence and the clock is ticking relentlessly while you see the signs of regression creeping up. The thing to remember is that this should never be viewed as a do or die situation. Rather, it needs to be looked at as another opportunity to hone your advocacy skills. For the reality is you are raising an ASD child to become an adult with ASD who needs to learn to be the BEST that he/she can be, to be as independent as possible and contribute to the world we live in in a positive way. There will be many obstacles along the way but there will also be many wonderful people you will meet in that journey and opportunities you never dreamt possible. At least this has been my experience having raised two ASD boys, now in their early 20’s.
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