You have no idea.

www.whatlisacooks.com copyright lisa marsh 2018

People look at my boy, they see him at school, they seem him out and about, and I know what they're thinking.

It's not the same as what people might think about a lot of kids on the spectrum. I read articles and posts about how other mothers have to deal with the meltdown and tantrums in public and people staring. But I get sort of the opposite. My kid is great in public.

They're thinking that they don't see an autistic kid.

They're thinking, he seems fine, he looks fine, he's getting along just fine, so why the big deal? Why does he need extra attention? Why does he need extra help? Why should we be making extra accomodations for him in the classroom? Why should he be allowed extra time to do homework, or have less homework? Why does he need breaks during the day? Why should he be listening to music in his headphones during dinner at a restaurant?

I see it.

People think I'm being overprotective. People think I'm being a "helicopter mom". People think I need to step back and let him work things out just like every other kid. People think he should be treated like every other kid, held to the same standards as every other kid, have the same expectations as every other kid. People think I'm just letting him "get away" with misbehaving. 

But he's not like every other kid. 

When you see a child like him in public, who appears to be doing so great, and acting so "normal", you have no idea the amount of effort it takes to get him there. 

YOU HAVE NO IDEA.

Yes, he's doing well (most of the time). Because of all the accomodations, because of the breaks, because I buy him special pencils, because he has his headphones to wear when it gets loud, because he knows his schedule and he can count on the people that he knows are going to be coming in to help him. All of those things you see that you think he doesn't need because he's doing so well - those things are the reason he is doing so well.

And then there are the things you don't see.... the hours spent in meetings and offices and late at night, by me and his special ed teacher and support staff. The agonizing over exactly which goals we are going to focus on, stressing over whether those precious support minutes will be used to help him in math, or reading, or science. Debating about whether he needs someone there in PE, to make sure that he is appropriately included and participating in games. Discussing how we are going to get him to learn to write better, or whether we should just let him type everything. The late nights spent pouring over every word of the IEP, adding up the minutes, understanding how we can help him. He is doing ok because there are so many of us spending so much time behind the scenes to make sure he has everything he needs in order to have the opportunity to be just as successful as every other kid in the class. 

Yes, he is (finally) sometimes playing on the playground like other kids. Because he has been in physical therapy at least once a week, every week, since he was 9 months old. He didn't just stand up and figure out how to start running and jumping and climbing like all the other kids. He had to be taught how to do all of that. He had to be taught how to climb those steps and that rope ladder. He had to be taught how to go down that slide. He had to be taught how to hold on to that swing. He is playing on the playground like the other kids because of the help he has been getting. But you look at him and think he doesn't need physical help because he's doing fine. 

It's just so exhausting to have to constantly justify to people why he needs support. As if they don't believe that I know what I'm talking about. 

I've been told that I just make a big deal out of all of this because I like the drama. "You're just doing it for the drama!" is what someone I was once close to yelled at me several times one day. I've been told that I was taking advantage of the system by taking special bus service for him. I've been told that he just needs to learn how to control his emotions and behave.  I've been told that he's manipulating me.

I don't complain about parenting him. At least I don't think I do. It can be hard, it can be a lot of work, but it can also be so rewarding. He works so hard, he tries so hard. He inspires me to do better, to try harder, to be better, to deserve him.