Those on the periphery may think that us special needs parents are constantly and completely, 100% of the time, dealing with medical issues, developmental delays, and all the things that make our kids different from typical peers. While for some this may be true, I find myself not necessarily dwelling on all the things that make Jack unique. I've been a big advocate of "my kid is just my kid." A normal day for us probably looks a lot different than the majority, but what else do I know? This is our life and we have gotten so used to it that I often forget. My bubble is my safety and usually I can remain in that safe space.
I don't think of Jack in terms of special needs, micro preemie, cerebral palsy, or any label all that much... until I have a morning like I did today. All it takes is to be around typically developing kids, in an enclosed environment, and someone expecting Jack to "just do x, y, and z, and we should be good!"
Today was school picture day.
A day entirely not up Jack's alley. A big room. Not his classroom. Lots of new kids, adults, smells and noises. A stranger trying to make him stand in a twelve inch square. After Jack not standing in the magic square for picture perfection for even ten seconds, me politely asking if he could please sit while his picture is taken. A chair? Well, yes. Trying to get a cheesy smile when I know for a fact that there are a million other places he'd rather be. A million things he'd rather do. Confusion. Tears.
Why did I even subject him to that? Well, because, it's school pictures! Everyone gets school pics, right? They are adorable. A right of passage. I don't want Jack left out. Special needs won't get in the way of this! I want to be that parent who shows the school picture to everyone. I want to carry around his super adorable photo in my wallet. I want Jack to fit in, just one of the kids. And me, just one of the moms.
And therein lies the truth.
School picture day became so much more about me than about him. He does not care. It's me, his mom, who cared enough to get worked up and shed a few tears of her own about something like school pictures.
Yes, special needs life is hard. It's hard when surgeries come up. It's hard when I long to hear my boy's voice. It's hard when people just don't get it. But sometimes (and what I'm still figuring out) it's my own hang ups, my own feelings of inadequacy, my own dreams for Jack's life that are just projections I am placing on my boy. Maybe I choose to forget special needs as my own coping mechanism.
But Jack? He's good. I make things a lot harder than they need to be. Jack is happy. And he is perfectly fine not having a school photo.