Tag Archives: self-advocacy

It’s Time

This is the week for me. The mad-dash week before school starts. All parents know how it is with registration, getting school supplies, checking schedules, that kind of thing. And all special needs parents know how it is with the added emails, calls, meetings, walk-throughs, etc. that are necessary in getting our children set up with the support systems they need to be successful. In a transition year – either starting at a new school or at a new level of school – those efforts are doubled.

This year Nigel starts high school, so he’s at a new level and a new school.  With all the stress I’ve been experiencing lately, I feel like sitting in a corner and rocking, stimming my stress away. So far it’s gone smoothly getting things set up for him, but there is so much time, effort, and energy (mental, emotional, and physical) involved that I feel like I am nearing a breakdown. I so want this to work for him. I want him to be comfortable and confident. I want his needs to be met. I want him to be accepted and appreciated. I want him to focus and learn and also have fun. I don’t want to worry about getting calls at work about behavioral issues because someone has purposefully pushed his buttons. I don’t want to worry about what our options are if this doesn’t work. Please, please, please God, let this work. Let him be happy.

We went to registration today, and then met Nigel’s new case manager. How must this woman feel? I’m sure she’s aware of the fact that we special needs parents place so much hope in her. I know she’s aware of that. In fact, she must have picked up on my desperate vibe, because at one point she said to Nigel, “I’m your school mom.” No one has ever said that before. And I wanted to cry and hug her and thank her because she obviously gets it. She knows how important her role is. I sometimes wonder if these professionals who work so tirelessly with our children, who are devoted to their success and well-being, feel the strain that we parents feel at the beginning of the school year. This combination of hope and anxiety. I should come up with a name for it. After all, it’s not just at the beginning of the school year that I feel it.

Anyway, when she said, “I’m your school mom,” Nigel gave a small, cute smile, like he thought the idea of a “school mom” was silly. But I sensed that it comforted him, and he understood her meaning. In that brief meeting, she really listened to him. I could tell that he felt respected, and comfortable. The regional autism consultant, who has known him since his nonverbal days, was also at the meeting, talking about his strengths and making recommendations. His speech therapist from the past three years was there, and we found out that she would continue to work with him and facilitate the social skills class that he will take. I feel very optimistic, even though the anxiety is hovering in the back of my mind.

However, the bottom line, the “take-away,” is that Nigel didn’t just attend this meeting. He participated. He was slow to answer at times, rarely made eye contact, and was frequently off-topic with his requests and comments, but he was an integral person. And he even remembered to cover his mouth when he yawned, which shocked me after all these years of telling him it’s the polite thing to do. I swear I think it was the first time he ever did it on his own.

But at this meeting he accomplished things that were so much more important than being polite. He spoke up and discussed his needs. He told us which subjects he needed to take at the lower level, and which he didn’t. He mentioned his experience with bullying. He advocated for himself. And I am sitting here in tears as I write this, because the boy who, at the age of five, could not tell a doctor his own name is now advocating for himself. He really is. And I sense that this is only the beginning. It’s like he’s trying to tell me, Mom, I got this. I know it’s not time for me to step back yet. No, there is still much more work for me to do.  But it’s time for me to let him step up. He’s part of the team. Yes, he is.

The First Meeting

Eleven and a half years ago, I attended my first special education meeting for my son, when he was three years old. It was called an IFSP – Individualized Family Service Plan – the precursor to his IEPs. Unfortunately, back then I didn’t think to bring snacks, but I did bring a tape recorder, thinking, for whatever reason, that I should.

I found the old tape and listened to it recently. It was cathartic, of course, knowing how far Nigel has come since then, but it was also very strange to hear my voice from that long ago – expressing my concerns, etc. – when I was so new to the realm of special needs parenting. I sounded so calm and sure of myself, even though I felt completely overwhelmed, had so many questions, and didn’t know the jargon. It was good to hear the confidence in my voice back then, not realizing that it had been there. I surprise myself sometimes.

And Nigel, of course, surprises me too. Last week, he attended his first special education meeting for himself. It was not an official IEP – just a placement meeting for next year – so we did not go over goals or anything like that. Nigel was reluctant to go at first, and for a while I thought that I’d have to go without him. I wanted him to go because this short meeting would prepare him for future meetings, the more intensive ones where we would discuss his goals and his progress toward them. I want him to be an active part of these meetings, to usher him into the realm of self-advocacy. To teach him how to diplomatically make his needs known to others. I tried to convey this to him in terms that he could understand, but in the end, what motivated him to go was the fact that we would need to use a map of his new high school to find the room where the meeting was being held. He has always liked maps, and immediately plotted our route.

Due to an inaccuracy in the drawing of the map, we ended up in a hallway right outside what was probably the band room, just as a loud burst of instruments blared. Nigel, eyes wide, covered his ears and yelled, “Back! We must go back!” As soon as we re-entered the previous hallway we’d been in, I said, “Well, now you know to avoid that hallway.”  “Yeah,” he said, breathless but okay.

We tried a different route and found our way to the library, where the meeting was being held. Nigel saw the Regional Autism Consultant, who has worked with him since the IFSP days, and he seemed to relax. We sat at a table and waited for the rest of the attendees. I was emotional to have Nigel there with me for the first time, and tried not to dwell on the magnitude of it lest I lose my composure. Soon the others arrived – Nigel’s speech and social skills therapist, the high school’s special education coordinator, and one of his teachers for next year (the rest of his teachers will meet the week before school starts for the official IEP).

I no longer record the meetings; in fact, I think that first one was the only one I did. But I’m glad I did so that I could listen to it years later. It was in the forefront of my mind as I watched Nigel sit in his first meeting. And I am quite proud to say that it went very well. The sped coordinator talked with him as an equal, asking him what classroom accommodations he felt he would need, assured him that all sped students get first choice for electives, and told him that he would be checking in with her every day to make sure that things are going okay and that she would help him if he needs any help. His first week, he will have someone help him get to class, and he will never, she said, have to eat lunch alone. Trying not to cry, I thanked her. Nigel, although making no eye contact and constantly scratching his head because he had neglected to take a shower when he was supposed to, answered everyone’s questions, talked about his interests appropriately, and even made a joke. At the end of the meeting, when asked what he thought of attending that high school, he responded, “If this library is well-stocked with H.G. Wells and Jules Verne books, I’ll be fine.” Everyone laughed a genuine laugh, and I stole a glance at Nigel. I could have sworn I saw a little self-satisfied smirk on his face. Oh, yes, my son, you will be fine.