Friday, October 11, 2013

Should your child on the Autism Spectrum attend IEP Meetings?

I was reading an article about a boy with autism who was silenced at a school board meeting because the subject was approaching dangerous legal ground.  Big thanks to Caitlin for pointing this one out.  I don't have any problems with the silencing because I fully understand the reasons and I don't think it was discriminatory.

What got my attention though was the boy's response to being silenced;

Christian concluded his talk by telling the audience that his self-advocacy work had taught him, "Nothing for me, without me," and left the microphone.

That's something for his parents to be really proud of.

I started thinking about this in more detail, thinking about how my wife and I have been going to IEP meetings without our sons and how the things we've been doing for them have been "without them".  I think there's a big flaw in our plans.

The Initial IEP Meetings
There's no doubt that the initial IEP meetings need to be conducted without the child being present simply because they're a time of deep emotional stress for the parents and teachers.  In those early days, one of the parents is often in grief and the other is most probably in denial. The teachers are guarded because they don't know how the parents are going to react and whether or not they're going to sue them or try to force a different curriculum or unrealistic expectations upon them.

Those early IEP days were a time of struggle when parents and teachers alike went through whole boxes of tissues and where voices were raised and threats were made.  It's not an environment I'd want my children exposed to.

Thankfully after the first couple of years, things settled down for us and we all realised that while we were coming from different directions with different budgets and expectations, we were actually working towards the same long term goals. Our IEP meetings today a breezy, chatting and fairly productive.


Getting the Child Involved
This brings us back to the line; "Nothing for me, without me".  It's a common cry within the autistic community. For example, there was a big outcry directed at "Autism Speaks" because they did not have a single autistic member on their board. I'm not sure if that's changed now but I have checked on the web and if they've rectified the problem, they're not being very vocal about it.

I started to think about the whole IEP process.  It's aimed at understanding where our child is struggling and finding things that will help him to achieve his educational goals. Who better than our son, to tell us what he finds challenging and what will and won't help?  Why are we ignoring him in the IEP process?

I think that perhaps, given that my eldest is thirteen, I need to sit down and discuss the situation with him. If he wants to be involved, then I think we need to make it clear to the school.  It might be time to start including him on his own advocacy.

After all, it's something that he'll be doing for the rest of his life.  He might as well learn it now.


7 comments:

Anonymous said...

I attend my own IEP meetins, and I have Asperger's. As a matter of fact, my mother doesn't attend anymore, because I take care of that myself.

Lindsay said...

I didn't attend my IEP meetings until I decided I wanted to stop having an IEP; I went to that meeting. It was bad; I got angry and cried because I felt like my mom and the teachers there were saying I was a bad student.

(I had a lot of internalized disability shame just then, and was REALLY emotionally invested in being just as good as the mainstream students. I felt like my IEP was a relic from a time when I actually needed it and that it served to set me apart for no good reason and somehow reflected poorly on my academic achievement, so I wanted it gone. Erased. The only distinction I wanted was the distinction of being a good student.)

When I was younger I had a lot less shame, and thus wouldn't have had an emotional freakout like that, but I also had a lot less self-awareness, so I'm not sure how much I could've contributed in a meeting. Not saying it wouldn't have been better to have been included anyway, but I am saying that for me, especially later on, there was a lot of emotional baggage that made me not want to have anything to do with my IEP.

I don't know how old the boy you mention is, but he sounds very mature. More mature than I was.

(I also think that, for your son, it's probably a lot less likely that he'll feel as though HE is on trial at his IEP meetings, because you are autistic too. So I definitely don't want you to take my comment as saying, no, don't do it, don't include him!)

Suse said...

Well said - our son has just turned 15 and we've realised we need to start involving him more in these sorts of things too. It won't be long and he'll be at uni, and needing to advocate more for himself.

AlysonRR said...

My 2 kids were both involved in their IEP meetings starting in 6th grade (age 11/12).

My daughter was adamant in denying services for speech/language at that first meeting in 6th grade (she'd been on IEP since 1st). She didn't want to miss class, plus she sees her speech patterns as related to dialect rather than "dysfunction" - I happen to agree with her! She has a father from England and some of her speech "issues" are pronunciations more common to that dialect.

My son (Aspergers) has had no problem being involved with his IEP meetings over the last 4 years. He listens, he adds information and requests, he participates - it's his meeting, impacting how he integrates into the school and how his classwork is completed. Because he doesn't verbalize his needs, I assist in that aspect, but it is definitely his meeting.

All that said, continual oversight is necessary for my son. If he misses assignments in English, I need to contact the teacher to see if there are alternate ways (included on his IEP: dictation, speech-to-text, etc.) to complete the assignment - that turns and F into an A, most of the time. This kid is capable and intelligent, but needs assistance to jump through the hoops...

AlysonRR said...

My 2 kids were both involved in their IEP meetings starting in 6th grade (age 11/12).

My daughter was adamant in denying services for speech/language at that first meeting in 6th grade (she'd been on IEP since 1st). She didn't want to miss class, plus she sees her speech patterns as related to dialect rather than "dysfunction" - I happen to agree with her! She has a father from England and some of her speech "issues" are pronunciations more common to that dialect.

My son (Aspergers) has had no problem being involved with his IEP meetings over the last 4 years. He listens, he adds information and requests, he participates - it's his meeting, impacting how he integrates into the school and how his classwork is completed. Because he doesn't verbalize his needs, I assist in that aspect, but it is definitely his meeting.

All that said, continual oversight is necessary for my son. If he misses assignments in English, I need to contact the teacher to see if there are alternate ways (included on his IEP: dictation, speech-to-text, etc.) to complete the assignment - that turns and F into an A, most of the time. This kid is capable and intelligent, but needs assistance to jump through the hoops...

Laura Gilmour said...

I think if a child or adolescent is capable of expressing their needs and wants in a school program, they should have the opportunity to attend IEP meetings as the beginning of self advocacy. When I started university, my mother would attend meetings with student services with me but I gradually learned the process of advocating for myself and learning to express which services worked for me versus which ones did not work well. I think it would be better for a child/teen to learn this earlier

AlysonRR said...

Laura, as the mother of a high school freshman who wants to become a geologist, I'd love to hear more about your experience advocating for yourself in university.

Were you able to secure any modifications you needed?

I would expect my son to still need to be allowed to dictate or used speech-to-text to complete longer writing assignments, and probably help with organizational issues. Possibly help with social issues, too, if that's available in college...