I love your brain

Navigating the world when you can’t speak is tricky. In order to share your needs or to participate in conversations or activities you need to rely on others paying a modicum of attention to you, which is not under your control at all. I see the frustration and sadness in Cole sometimes when people, sadly, including myself, don’t notice he’s trying to express something or vying to be a part of a group conversation.

When he was small, it felt natural for one of us to sit near him so that we could facilitate his inclusion a bit. Most younger children have their parents close even when they’re socializing with other kids. Now that he’s a teen, and going to parties and outings where his friends are dropped off and on their own for the most part, it’s a different scenario.

He doesn’t want to be the only kid with a parent around, and if there is a parent around, he definitely doesn’t want them in the thick of things helping him be part of the group.

But he’s not able do this successfully on his own and friends can’t be held responsible to include him or to make sure he’s an active part of the festivities.

I’ve written about this before but I’m grappling with it because I see him left out of conversations more and more and I see the effect it has on him. And it’s not anyone’s fault. It’s sadly just a reality of his circumstances and I struggle with how to make it better for him.

I don’t have any great solutions and the tough love part of me feels like he needs to accept some of the responsibility in it. He has a communication device that he uses at school, but that he most often refuses to take with him anywhere during the weekends. I understand some of his reasoning as it’s rather large and blocks him from view from people a table, and also blocks everyone else from his view. Not ideal, but it gives him a voice and a means of including himself in conversations, and initiating them too.

The nurturing part of me wants to hire a peer to support him and facilitate his participation. A peer, as opposed to the adult support we do often hire, at least is part of the action too. It doesn’t seem as obvious as having an adult with him. But it feels a little like paying someone to be his friend, and that feels terrible. He’s got great friends who adore him and do their best to include him.

It weighs on me because there’s not really a great solution. He’s got a big 7^th grade night time party this weekend that he’s so excited to attend, which is why this is on my mind. I just want it to be everything he hopes it will be…I know I can’t be there to make sure it’s a good experience so it ruminates in my head…If I could change anything for him, it would be to give him his voice…the impact of him having the ability to speak would change everything for him. More so than walking, or eating, or having better motor skills. I’d give anything to hear his voice.