How to Fight for the Best Education for Your ASD Child
As the mother of six children, three autistic, three not disabled but in speech for a few years each in elementary schools, I have gone to way more than my fair share of educational meetings at school. Over the decades fighting that red tape, I have learned some ways to make the process less of a war and more of a fair fight.
You have to learn the red-tape-terms and the process of advocating for your child’s needs, as school staff often focuses the needs of the whole classroom and quotes funding limitations. As the parent, your objective and motivation should be to get the best education for your child. You are the only person fighting solely for your child’s needs.
Which IEP terms should I know?
First off, IEP stands for Individualized Educational Plan. Let’s define that first word. Individualized: Means that the “team” decides and devises individualized “modifications” for your child’s school day. “Team” is your first red-tape-term. The “team,” as they call those at the IEP meeting which are the parents, teachers, therapists, administrators, and a “parent advocate,” if you choose to bring one. “Parent advocate” is another red-tape-term you need to learn to parrot, so the team knows you know your rights. If you feel better having a second person arguing your side against the five or ten school staffers, then bring one. Another parent with IEP experience is an excellent choice, or a social worker, or just a friend.
You might need to politely cite the definition of ‘individualized’ to some teachers who balk at things you are asking them to do or not do for the sake of your child. I had one meeting with my autistic son’s 3rd-grade teacher as she was having trouble with him during her piano-led morning lesson during Day of the Week, Weather of the Day, and such.
This was done in her class right at the beginning of the day, and my son did not handle the noise level of it well and became disruptive. I suggested she do it a half hour later when he would be out of her classroom at speech therapy. She resisted this change saying she shouldn’t have to change the class schedule for one individual. I answered, “It’s called an individualized education plan.” The same had to be noted to another teacher who did not want to let my oldest daughter work alone on a project that the rest of the class had assigned partners.
Again, individualized, yes, means sometimes your child will need and can be given, different special arrangements or to use your next red-tape-term that I mentioned above, “modifications,” because they are needed.
Another possible conflict concerns your next red-tape-term, “least restrictive environment.” This is the legal term meaning your child has the right to be in a regular classroom with their non-disabled peers as much as possible with modifications being made there so the child is not unnecessarily segregated to a “separate environment.” This will also be called a “resource” or “intensive intervention” or “special ed” class,” or some new term of the year.
Now, you may want your child in that separate setting all day long. My youngest daughter got to this point in middle school when her peers had reached that age where they tormented anyone different. If you think that is the best place for your child, you’ll likely get little resistance to that. I was happily given that upon my first time asking. However, if you think your child would benefit more from being around non-disabled peers, integrated into a standard classroom, then you may need to advocate more strongly for that.
Use the word segregated, though it is not one of those red-tape-terms, it is a good tool when you are arguing for “least restrictive environment,” and the staff is arguing for the special education class. Also, beware of the “lunch and recess” option as some schools like having special needs kids in separate special ed classes all day but then put them with their non-disabled peers for lunch, recess, assemblies, art or music class. This might work well for your child. Or it might just single him/her out for more bullying and make the child feel more different by being thrown into the melting pot only at lunch daily.
The next two red-tape-terms are “behavior plan,” which is a written out agreed upon set of rewards, punishments, and “interventions,” the second new red-tape-term here. This, too, needs to be individualized. Just because in one class it has proved successful to limit students who have gone from green to red on the behavior chart to walking laps around the playground before playing at recess, does not mean that system will work well for your child.
Instead of walking laps, your child might benefit more from writing sentences stating the appropriate social skills they were struggling with to move their light from green to yellow and then red. The child may not benefit from the traffic signal concept and have to go to a beanbag chair in the corner to settle down when he/she acts out, instead. Yes, that is different from the rest of the student’s rules. If you need to define “individualized’ again to the team, then do so.
One of the biggest points of contention will be the amount of time or red-tape-term “services” your child gets at school. If he/she needs speech therapy daily, don’t be shocked to find the speech therapist who has lamented his speech struggles and lagging improvement for the whole IEP meeting suddenly switch gears and say he/she should only get speech two or three days a week. Sometimes this happens because the therapist doesn’t have the time to see the child every day. Often a school will only have “half a speech therapist.” I always ask which half. Because school funding is often stretched thin, sometimes a therapist can only spend half day at one school, then the other half at another school.
That is a legitimate problem, but it’s not your problem. I wanted my middle school son placed into art class for both semesters for both middle school years, even though the rule was students could only take elective art for one semester of one year because they have only had half an art teacher. That was not giving him the individualized services he needed as art was his one strength and where he could be with his nondisabled peers and keep up, and I had to argue for it.
That is one of the battles I lost, alas. I had to debate the same issue with a different school for my youngest daughter’s Head Start classes. She was non-verbal and needed to go to program before kindergarten. I finally got the call that a slot was available over a year after we’d put her on the waiting list. Then, at the first IEP meeting, I found out she only had one-third of the one open slot, because they could only offer her two mornings per week because they were giving the other three mornings to another child on the waitlist and the five afternoons a week to a third child.
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I was not happy at all with this, particularly since the other children in question were not non-verbal or even disabled, and she had already totally missed the first year. I fought that battle too and lost it. Lack of money is the main problem the schools have that makes them have to fight the parents on these issues. They want children and classes labeled certain ways because they get more funding for those and they limit services because they do not have the funding to provide the needed services. However, the law states special needs children must have their needs met. The school is often put in a hard situation, and they have to fight you on those over-needed under-funded services. You will lose some of these cases, but stand up to the staff, acknowledge they have real problems they are dealing with funding-wise, but affirm that is not your problem or your child’s problem.
Be aware of labels
Another possible point of disagreement is what label the school uses to get your child to be qualified for an IEP. It can be anything from hearing-impaired to autistic, to ADHD, to mental retardation, or mental illness to other health impaired. Firstly, you want one of these labels because that is how you get the IEP to get the special services and accommodations. However, all labels are not created equal. One usually does not want their child labeled with obstinate defiant disorder (ODD) or behavior issues as a qualifying label, though such can be true and there is that label to use.
Mostly it does not matter which box is checked on that area of the IEP. In my state, however, having the box checked for autistic created hindrances for them at school and for me at IEP meetings because, ironically, the school system was very rigid in how autistic children were handled. For example, my son who was speaking and reading, though below grade level, was forced to have a picture schedule instead of one with words, because that was how they did schedules with all autistic children at that time. It was an IEP fight yearly.
Knowing this and such issues he had, I never let the IEP team label my youngest daughter as autistic and instead had her down as “other health impaired” which avoided many of the troubles I had with the older son and older daughter going through the same schools with the autism word on their IEP forms. This is just an example and I hope this is no longer the case in many school districts, but be mindful of the label box checked.
What can I expect at a meeting?
Some IEP meetings will be 15 minutes of chatting happily with staff and signing forms that had to be signed because so many months have passed since the last team meeting, and there will be nothing to debate because everyone agrees on all points. Alas, others not so much. I had a nightmare meeting that lasted almost seven hours and I was in tears multiple times having to flee the room at midway to calm down. Most meetings will fall in between these two extremes.
I found many parents just do what they are told by the teachers and administrators. This does a disservice not only to the child, but to us parents who are at the next meeting after them as we have to fight for our children’ rights instead of just agreeing with whatever the teachers, therapists, and administrators want. With some luck, you won’t have to fight much, you’ll just have to state your case, and not back down, and reach agreements without compromising your child’s educational needs. Don’t be afraid to fight the good fight when needed.
When all else fails, know your rights. You do not have to sign, or agree to an IEP written contrary to your requests. You can jump through the hoops to make the school do a “mediation” with you about whatever points you were unable to win with the team. The school has to follow the old IEP while a new one is under mediation. These rights often change, one last red-tape-term: a “Parent’s Rights” handbook will be given to you at each meeting. It is often edited, so know your rights going in, and demand them.
Ginger Strivelli is the mother of six children including three who are on the spectrum. She lives in Luxor Egypt now with her youngest autistic daughter on a small farm with lots of therapy animals including a baby camel. She visits back in Jupiter, NC, USA often, where she raised her children and her older five still live. Ginger is an artist, writer, and avid world traveler.
This article was featured in Issue 75 – Helping Your Child with Autism Thrive