Monday, April 9, 2018

Fighting the Good Fight: The IEP Meeting

I'm sitting at Starbucks pretending to be another person working, but really I'm waiting. In forty-five minutes I will return to my son's school along with my husband, E's in-home therapy case manager, and his lead in-home therapist on whom we've come to rely, because they can help our son where we can't. It's a humbling experience.

My husband is used to meetings. He says the key is to be prepared. Those of you who know me may have noticed that being prepared is not one of my most fine-tuned skills. Yet, here I am with a bag stocked with a notebook, lists, and present and past goals and progress reports. I could (and very possibly will) write an entire post discussing the things no one tells you about being a special needs parent. Right now, I'm thinking about the paperwork. The forms and reports and requests and evaluations. The forests and forests of trees stuffed in E's file alone. But, I digress.

I was not prepared for my first IEP meeting. I remember walking in to a room full of people sitting around a long table, each equipped with their own laptop, lanyard, and shiny coffee cup emblazoned with the school's name. The scene may have been overwhelming even for someone who doesn't consider ordering a coffee to be enough social interaction for one day. Besides, I wasn't exactly sure that these people were on my side. The whole thing felt strangely like a court proceeding. I'm not being critical; E has made leaps and bounds in his blended classroom (about 50/50 special education and mainstream students) and his teacher is amazing. I have every reason to believe these people I don't really know want my child to be successful nd supported in school. The thing is, though, I can't afford to assume that. I have to be ready and willing to play the unfamiliar and uncomfortable role of an assertive person if I feel my son isn't getting what he needs.

The weirdest thing about IEP meetings and all those evals we need to fill out is the concept of discussing and highlighting what our child can't do. The focus is on where he is falling short of his typically developing peers. Of course, the point of all this is to get him the services tht he needs. I know this and I'm grateful for it, but irrationally it almost feels like a betrayl every time I make note of my son's deficits.

I'm reminded of the tender baby years. All the talk about when so and so rolled over, first teeth, first smiles, and first steps. We love to tell people these things; to record and celebrate these milestones, especially if they're early. But what if they're late? We still need to talk about that and even record it, but this process is decidedly less pleasant. The polished Facebook world of firsts and glossy back to school photos suddenly seems foreign. At an IEP meeting you discuss what your child should be able to do but can't. You also feel a vague since that you're preparing for battle, even if you have the best IEP team.

This time, the stakes feel higher. We will be meeting a whole new team. In the fall, E will be transitioning to kindergarten, one of the biggest milestones.

So, am I prepared?

No. I wasn't prepared for any of the extra challenges autism brought into our world.

Yes. I'm E's mother. I know his needs, his strengths, his quirks, and his unique and infectious curiosity. I want his team to see what I see. I want them to see his value and strengths. I want them to see past his diagnosis.

The thing is, I also need them to see his difficulties. I need them to remember his diagnosis not for the "label", but to resist the temptation of pushing him through because "all five year olds do that sometimes". Yep, I've heard that. I've also heard that they don't see some of his more pronounced sensory seeking during the two hour school day. Kindergarten might be different. Kindergarten will be different. I need them to see the full picture.

Prepared or not, I will do everything to make sure my child has the tools he needs to succeed. Now if you'll excuse me, I'm going to go put on my (probably dog hair-covered) armor.

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