As the mother of a young man with Down syndrome, each new school year comes along with a torrent of feelings. Emir is already 13 years old. He has a voice, he is doing a great job, and I am looking on from behind, admiring his strength, his intelligence, and his independence.
Still, I am in the process of stepping back and learning how to handle this very typical situation as a parent raising children with disabilities: like many parents, I sometimes tend to make everything about me and my feelings as a parent and completely forget that this is not about me but about my children. I have to admit I am guilty of this on occasion. That said, I think accepting is the first step to overcome this, and that is what I am doing here.
Sometimes I am overly excited and boisterous about a task and when I look at my son, he is completely under control. He is fine! As he says repeatedly, he is cool! Sometimes I am completely overwhelmed by what comes next, and when I look at him, he is advancing toward his goals, probably slower than the rest but at a steady pace, and most importantly, he is enjoying every step and is proud of every accomplishment.
But me being me, as usual, and trying to have everything in place since the very beginning, I requested a meeting with his new teachers to review his Individualized Education Plan and check on opportunities to collaborate and support the school’s strategies. The meeting went amazingly well. We are truly blessed to have such a positive and committed team. Everyone is in love with Emir, but most importantly, everyone sees his possibilities instead of his challenges. I am grateful for that!
Among many other things, we were discussing tools to accommodate him to complete grade level work and promote his full inclusion, so the “calculator discussion” came up. He will be using a calculator this year and I think this is awesome, but in my mind, a talking calculator would make things easier. Especially after having discussed this with a good friend of mine who reaffirmed it was a brilliant idea, I felt this was his best chance at full inclusion and success with math. Excited about it, I proposed the idea and offered to provide the calculator to the school. The teachers said he could probably use his cell phone calculator but still, I explained having a dedicated tool would help him focus better on the task and we all agreed it was a great idea.
I came back home happy and excited after a great meeting – parent’s dream – and started talking to Emir about it and everything we had discussed regarding his school year. “By the way”, I told him, “I am getting you a talking calculator.” The look on his face changed immediately. “I don’t want a talking calculator, mom. I want to use my phone’s calculator.” I was like, “Are you kidding me? A talking calculator is such a great opportunity for you to accomplish math in an easier way!” And then a thought popped up in my mind. – Not your choice, Emir’s mom. Stop it! – and so I did and I apologized for not asking him about his preference in advance. Two minutes later, I saw him opening his backpack, looking for the calculator on his phone, and completing his math homework all by himself in the smartest and most incredible way.
I have to admit this is probably one of the hardest times as a parent. I have always been in charge and I keep making mistakes now that I can (and should!) relinquish some control. Many times I forget to ask him first. I assume my decisions are the best, and I swear, I am working on it. On the other hand, I couldn’t be more proud to have raised such a smart, balanced, and polite self-advocate. Despite all the mistakes I have made in my path as his advocate, he has managed to take the best of every experience and become this young man who has the sweetest but most powerful voice I have ever heard.
I love you, Emir. You make me proud!