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Your Thoughts Requested: How Can Parents Facilitate Classroom Inclusion for Their Kids with Autism?

By July 16, 2008

I'm a parent with a child on the autism spectrum. From the time my son was three until he was eleven, he was a part of the special education system. As a good mom, and as a professional researcher/writer, I got in there and learned all about my rights. I attended seminars on "how to write your IEP." I came to "team meetings" at my son's schools armed with piles of paperwork and the names of advocates and lawyers whose fees I couldn't possibly afford.

Year after year, our IEPs sounded like heaven on earth. But the district never fully supported or fulfilled them. Over time, the situation degraded to the point where our relationship with the school administration was lousy - and our son was progressing at a snail's pace. The frustration level was high, and the outcomes seemed increasingly poor. Finally, we decided the simplest, pleasantest, most effective way to provide our son with a terrific education and appropriate inclusion was to do it ourselves. Last year, we started homeschooling.

Of course, not every parent will choose to homeschool - and school inclusion is consistently described as an ideal educational choice. I started researching inclusion, looking for information about what makes inclusion work - with an eye to providing parents with the information I'd somehow missed.

So far, I've discovered a great deal of information, and interviewed several experts. All of them have provided information about what the district must provide; how teachers should be trained; which tests and evaluations are most appropriate; and on and on. But while parents can recommend, demand, or even provide a few of those items, most - such as hiring, budgeting, training, and scheduling - are largely out of parents' control.

I've asked and searched for information about what parents can do to support, facilitate and/or ensure "true" inclusion - the kind that educates each child according to his needs and abilities, involves parents in every decision, includes general and special education teachers in high-quality, frequent trainings, and ensures that each child's long-term goals be considered from the earliest years. But so far, the only really advice I've found is -

  • Advocate. Get in there and tell the school what you want. If it's not provided, hire an advocate. If it's still not provided, hire a lawyer. If it's still not provided, sue.
  • Get lots of parents on your team, get them to agree on a mutually acceptable set of expectations (despite childrens' very different needs), and come to the district as a group. If you don't get action, hire an advocate... etc.
  • Choose an educational approach. Hire an evaluator who will support your choice. Bring your child's teachers, therapists and aide (if provided) to trainings at your own expense. Purchase and provide resources as required. Repeat annually.
Clearly, this kind of advice is only marginally useful. It assumes that parents have deep pockets, plenty of time, and an appetite for confrontation. And even when parents have all these resources, they may not be successful in achieving long term positive outcomes for their children with autism.

Yet some parents HAVE been successful in achieving positive inclusive environments for their children. Of course, some of the credit - in some of those cases - probably should go to districts that truly embrace the idea of inclusion. But surely some of the credit should go to parents.

If you're such a parent - how did you make inclusion work for your child with autism? What kinds of hints and tips can you offer other parents (particularly parents who do NOT have the financial or personal resources to hire expensive lawyers and advocates)? How much time, energy and focus did it take to create the right environment for your child? And - were you able to sustain that environment for more than one or two school years?

Comments
July 16, 2008 at 10:21 pm
(1) Debi says:

I’ve found that it isn’t the school district but the individual school that determines a successful outcome. My son was in his fourth elementary school by the time he was in the last part of kindergarten (he started at age three).

I’ve always tried to work with teachers who seemed willing but the truth always came out when they were unhappy about inclusion. All the moving around did hurt us a bit financially but I KNOW it has served my son well. He is now included and accepted by the staff (teachers WANT him in their class), the kids and the community.

It also benefits by being involved with the school through activities, PTA and community/neighborhood functions.

I feel I must speak to the confrontational method of pursuit. Especially for those who are in smaller communities, this just IS NOT going to work and your child will suffer for it (even more than you think they already are). So be kind, treat people as you want to be treated, try their plan first (if compromising doesn’t work) and if it doesn’t work for your child, be kind when you make strong suggestions (possibly backed by the doctor) as to what you’ve found that works for your child and ask for changes. Be involved with showing how something isn’t or is working but give issues time to resolve on their own unless immediately detrimental.

Confrontational tactics should ALWAYS be the very last resort. I say this because I come across so very many well meaning parents who’ve pushed and shoved (those are the kids I’ve seen suffer the most).

By being kind, I’m always asked to be on committees, attend functions to represent special needs, etc. You know, flies and honey…THAT is where the REAL differences are made…having input from the get go.

Early on I had one principal come out and tell me at an IEP meeting that I needed to put my son in a different school. I thanked her, and I did, it was more than clear my son wasn’t going to get the support he needed there. I was thankful for her honesty, it was the best thing that ever happened to my son.

July 18, 2008 at 10:56 am
(2) Lorelei says:

My son went through 2 years of Head Start, Pre-K, Kindergarten and was in the 1st grade when he was finally diagnosed with PDD-NOS. I live on a reservation where resources and knowledge about autism are scarce. In Kindergarten, the school district labeled him learning disabled and we attended the IEP meetings with the school and the special education department which worked with him throughout his Kindergarten and the first 2 months of his 1st grade. During the one of the IEP meeting I asked about autism, I didn’t really know that much about it but had heard alot about it by watching “Imus in the Morning” on MSNBC. I was informed by the principal that he would need a medical test and the school didn’t provide it. There was one doctor at our local IHS who was capable but getting into see him requires a miracle.
We moved to a reservation in north-central South Dakota where my husband is from. My son was entered into 1st grade and started school at the beginning of November of 2006. By the middle of December 2006 the school had requested a home study and s school study from the children’s hospital they contract with. On January 16, 2007 we went so Sioux Falls, SD for the day long test and there he was diagnosed being on the spectrum, with PDD-NOS.
In 3 months that school district accomplished or informed us what was really wrong with our son. I shudder to think what would have happened if we didn’t move to the different school district.

July 22, 2008 at 9:01 pm
(3) sandra degiorgio says:

I couldnt agree with you more. I usually start abusing people before I get a chance to really think. Having a child with Autism was definitely my learning path in life to make me understand that you need to speak to people the way you would like to be spoken to. My 7 year old son is at a mainstream school and doing really well, all the teachers and aides are friendly, helpful and cant do enough. I’m sure if I was the old Sandra demanding, aggressive and (no-one is good enough attitude), my son would not be treated as well as he is. As my mother would say, “if you want from someone, be nice, or you wont get”.

October 20, 2008 at 8:50 am
(4) Sheila Catherine says:

Thank you for discussing the nonconfrontational approach! I currently have a child diagnosed with autism in my second grade class. Last year, Mom and the teachers and staff had a very adversarial relationship. The school wanted to see her son moved to a more restrictive environment and she did not. Unfortunately, it’s been an uphill climb trying to work with both embittered sides and regain mom’s trust and cooperation; for the record, we (my co-teaching partner and I)are trying to make things work in the general education classroom. PLEASE try to remember to keep the child’s interests first. Parents may think that the more militant action is best but remember when you leave those trenches, your child remains there. Thanks for listening and God Bless!

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