There was another first for our 13-year-old this week.
We worked with the wonderful team at H’s Distributed Learning School to update his Individual Education Plan (IEP) and for the first time ever H was there to take part. He wasn’t completely interested – but we built-in other options for him so he could participate at a pace and level of involvement that was comfortable for him. He began the meeting with us, and then, when he felt he needed to, he drew back into an activity on his computer. I am really proud of the way he handled this and how he was able to join in again when he had something to say, or when it seemed important to encourage his involvement.
Have no doubt… he was taking it all in
It was interesting that he was wearing his headphones – but made the point that he was able to hear all that was said. He stated that he ‘had the volume at the lowest level’ so he could still hear the discussion.
It may seem like a small step… but it was and important one in terms of H’s role as a self-advocate and the right of self-determination. It was a gentle beginning – and there is a little part of me that feels a kind of tugging shame that we hadn’t done this sooner. In all 
honesty, though, I think H is just now at the point where he is becoming interested.
I will let that shame go… (There it goes… Released!)
He was able to join us and take part in the meeting at a level comfortable for him because we think this needs to be scaffolded, and Craig and I want our child to be supported in developing the skills of self-advocacy. I loved it when his resource teacher suggested that someday he might be the one running the meeting. Thank you Mrs. M for that gift of possibility! It might not be this year, or even next, but it is a reasonable goal, and one that makes huge sense to me.
Involving H was a wonderful shift for his educational team and a positive step for him.
As a special education teacher, I have noticed that an IEP is viewed differently when the student is present in the room. It makes a difference when the person being discussed is at the table: the process of involving a student in the writing and planning of their own IEP makes sense. It encourages respect for the individual because their presence provides a reminder and a lens through which each chosen word is more carefully considered and the impact of each goal and outcome contemplated. It puts the individual where they belong… as a part of the Individual Education Plan.
We will be supporting H to play a greater role in participating and developing his future Individual Education Plans as he continues to develop.
This is self-advocacy…
This is inclusion!!
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30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.
© Leah Kelley, Thirty Days of Autism, (2012)
Thirty Days of Autism 
Sounds much like our service users annual review–they control as much of their planning as possible. Especially, who attends.
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I am hoping that this will support H in planning and advocacy as he transitions to adulthood. I know the time is going to go very quickly indeed…
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My son does this, too. It is great. Good for you and H!!
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Thank you, Lenore.
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What a fantastic idea! I’m glad it went so well.
We’ve involved our 9yo daughter in one meeting on a topic she was particularly passionate about. However even that small session was too overwhelming for her, she is not ready yet. I look forward to the day when like your son, she is ready.
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((Marita)) Thank you for taking the time to comment. Yes… it is only since January – at age 13 (now almost 14) that H really seems to be interested in talking about being autistic and learning about self-advocacy.
Attending his IEP meetings is a part of that… but we all need to be sensitive to what our children tell us with their words or their actions about where they are at with this. It sounds like you already have that figured out and are wonderfully sensitive to your daughter!
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Wow! That’s so awesome Leah. Your son will always be a great Advocate because you guys are. This is a goal we have been working on with our boys. It’s so much easier with our oldest because he wants to be included. He wants to hear what we want to do with his education and pick the stuff he really wants to do or use. We would ask him questions when he was younger but found he wasn’t interested at all or just went with what we wanted. Now that he’s bigger he’s getting a opinion about everything. I still have trouble getting our youngest son to want to be involved. We ask him loads of yes or no questions but he often just looks at us or shrugs. I have hope he will get interested in the process soon. Seeing another mother getting her child this involved in his learning is very encouraging. Thanks for posting this and all the other posts you do. They have always been very helpful.
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Thank you for your comment and your encouragement as well! That really means so much to me!
((Hugs))
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A win for self-determination!! Congrats…to H and the family!
Tim
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Thank you, Tim. That means so much coming from you!! Yay!!
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We have started involving our son in his IEP meetings and he has gradually become much more involved which is wonderful. Our wee girl is only 6 and has a while to go before she would cope with the same but I am hoping to see this with her too one day.
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Love what you describe here Leah. “It encourages respect for the individual because their presence provides a reminder and a lens through which each chosen word is more carefully considered and the impact of each goal and outcome contemplated”: particularly resonates. H at 13 is quite a thought: pivotal age/stage; good time to come to the table.
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