What I'd Like to Say at the IEP Meeting

So, Ethan has his annual IEP meeting next week. For those who don't know, IEP stands for Individualized Educational Program, is mandatory for any child in special education, and is specificially designed to meet each child's unique needs. The plan includes goals and objectives for not just academics but also, when applicable, daily living skills as well as any additional services the child receives, such as speech, occupational, or physical therapy. IEP's can be modified at any time but are updated at least annually.

These meetings aren't the horror shows I'd feared, after reading stories online -- probably because the staff at Ethan's school are pretty reasonable and seem to genuinely care about the children they are educating. But I wouldn't call them pleasant. I'd call them a parent-teacher conference multiplied by about ten. The principal is there. Every one (if you are fortunate) of your child's teachers and therapists are there. People shuffle around documents and tell you where your child is doing well and where he falls behind. Sometimes the discussion is rather "clinical" and full of acronyms. Sometimes they forget you're there and you're sitting at your end of the table, feeling rather outnumbered and a bit overwhelmed, trying to remember advice you read somewhere about how to best advocate for your child.

I've found in these meetings, it's kind of like labor and childbirth. You can have a plan. You can be really confident about the plan. And then you can walk in the room and something happens you didn't expect, something that throws you and maybe gets your emotions kind of out of whack, and the plan is out the window.

There are always things I want to say at these meetings that I don't end up saying, so I've decided to say them here. Call it a fun little outlet before the stress of actually walking into that room next week. So, here I go with the 6 things I'd really like to most express to the people who care for my son:

1. Thank you. Thank you for what you do, day in and day out. It can't be easy. I have a deep admiration for anyone who dedicates their life to educating those with special needs (and really for anyone who would long to spend their working day with preschoolers!). I can see you care for my child. I can see you are motivated and passionate about your job. That makes such a difference for us parents. I am grateful for you. That being said, I have a few requests and questions. I guess this is one I can say and do say. Maybe this is one I really must not forget to say. 

2. Can we please not rush through this meeting? Even if you feel rushed and there really isn't time, can we conduct the meeting in a way that doesn't feel as rushed? Can people not look at their watches or keep talking about how they have to duck out in a minute? Can you, Principal L., slow down when you speak? I love that you want to be efficient. I know we have a lot to discuss. But I can't help but feel as if I'm on some sort of assembly line of IEP meetings, that I need to be pushed out the door so the next parent can come in and be rushed for the parent after that. That kind of atomsphere doesn't make me feel that you see my child as much of an individual.

3. Along those lines, this time around can we not try to decide my child's services for the school year, the summer, and beginning of the following year all in one meeting? Again, I appreciate efficiency and like the idea of streamlining meetings. But -- my son is going to kindergarten next year. This is big, and marks the beginning of his "official" education. I have no idea where he's going to be months and months from now. We are going to need to sit down again. We are going to need to see where my child is then. A year is a long time, especially when you are four turning five.

4. About your summer program, even though we're just passed summer. Please tell me why you don't offer services appropriate for my child? My son has not attended summer school ever because apparently the program is only individualized instruction, and that's not what Ethan needs most. But Ethan does have needs. So do many, many of children with autism in the program at Oliver Ellsworth. His teachers have admitted to me that most of the kids are fine in the academics but like Ethan need lots and lots of practice socially. My hunch is the schools who do offer these services are the ones with official "peer model" programs. Speaking of that:

5. Why does our town not have an official peer model preschool program? What determines which towns do and which do not? Why is it that my friend's son one town over attends school and summer school with a class that has a majority of typical peers while mine does not? This may seem like a minor issue, but it's not. Ethan's greatest need is to learn how to navigate socially, and he needs lots of practice and many, many opportunities. He's not in the ABA classroom, yet his interactions are still occuring primarily with other children with special needs and in particular, those with social skills issues. Times are changing. The diagnosis of autism appears to be changing. These 1 in 88 kids diagnosed are not primarily on the severe side of the spectrum, but they do have needs, and those needs are not being met. We are using an old model and old numbers. So many of these kids need something different. Can we be open to that? How can we change what we're doing and make it better?

6. Last, and this is a big one: please, never stop communicating. I need feedback about what's going on with my child. I need to know what he's learning in his therapies. Do you know what it's like to drop off your child at school and then just sit and wonder? When your child has special needs, you can't just sit back and assume everything is fine. I am grateful my son can tell me the basics about what he did at school. But he can't tell me if he listened to another peer who was trying to reach out and talk to him...if he played alone or joined in on games on the playground. He can't tell me (yet) if another child made fun of him due to his say, exaggerated interest in mens bathrooms. He can't tell me specifically (and this is a big one) whether or not he is getting the therapies he is supposed to be receiving. When I don't see any notes from a therapist for not weeks but months, I wonder. I wonder if he's even getting the therapy he needs. I wonder, if a staff person is away or out for awhile, if they even try to make up sessions lost? I wonder what in the world he is learning. For a child that unfortunately right now does not qualify for any outside therapies, I can't tell you how vitally important it is that he receives quality therapy in the school setting. I shouldn't have to wonder what's going on. When I'm left wondering, I lose my sense of trust. And I don't want lose faith in the very people who are working with my child, each and every day, who I need to believe in my child and to provide him with the tools he needs to excel.

This is what I'd say, if I knew I could be articulate; if I knew we had the time; if I knew I wouldn't get lost in emotion or rattled by their contradictions.

This is what I'd say.