It's Ok To Care. Don't Forget That.
I’ve been thinking a lot about Cooper attending kindergarten next year. Right now he goes to an autism preschool at the actual elementary school. He rides the bus. Which is great. His class has 4 other kiddos in it. And every day they join the typical 4K kiddos.
It is a completely controlled setting. It’s 3 hours long and Cooper has a teacher and an aide and a speech therapist and an occupational therapist. He lives in a bubble.
When I went to the open house this year I watched Cooper explore the room. He offered no signs of excitement. Or that he knew where he was. He didn’t care to show me anything. He started to destroy the room. I’m not joking. He took that mother down. Puzzles were thrown, chairs were pushed off tables, books were knocked off shelves.
I started to sweat and smile. His teacher is amazing and helped us out. She was not at all phased. She loves Cooper. That is evident.
I met two of the other kids in his class. Two boys. One sat on his mother’s lap the whole time. And he talked. The other one asked me to do a puzzle with him. He asked me verbally. He sat down with me. And played.
When those two boys and their families left I immediately make a joke to his teacher that I had the worst autistic one. How the hell is this possible? How do I have the worst one? She laughed and hugged me and told me I was being silly. She is truly great.
But it sucked. Cooper couldn’t even walk down the hallway. He rolled. And screamed.
I got an email the other day that Cooper refused to take a school picture. To the teacher it was no big deal. (PS his teacher is absolutely amazing!) Why would it be. Cooper isn’t even in kindergarten yet. Who really cares if he is in the elementary school year book?
Raises hand.
I care. This mama cares.
I care for little reasons. I want a school picture for the wall at home. I want to order the pictures, cut them out and give them to our family.
I care because I dressed him super cute and spiked his hair. We talked all about pictures. And he had no idea was I was saying. Or showed no sign that he did.
When I told people/friends/family why I was down that day I got the same answer from every single one. Who cares. It’s just a school picture.
I care for big reasons.
I care because this is a sign of ALL of the things Cooper will most likely never do.
So, yes, it’s a silly picture. But it’s also my future.
Cooper should be playing t-ball. Or soccer. He should be joining in activities at school. And making friends. He should be telling me about his day. Or bringing something to show-and-tell.
But he’s not. He’s not doing any of it.
So that dumb school picture means a lot to me.
I could lie and act tough. But I do that with everything else.
I’m getting really sick of pretending like stuff doesn’t matter. It’s like I have to not get sad to make it through the autism journey. That is so not true.
Cooper didn’t know he was starting school. He didn’t know he had brand new school clothes or shoes or a backpack. He didn’t help me pick out snacks for his class. He wasn’t excited to start his first day.
It’s not fair. So it’s not just about a picture. It’s about all of it.
So I want to say to all of the parents out there that don’t get to experience the ‘typical’ stuff with their kiddo…It’s ok to care. I get it. It’s ok to be really sad about something that seems silly to everyone else.
I just want you to know that.
I feel like people are around me are always trying to harden me to autism. Or to being a parent to an autistic kid. Or maybe they are trying to play it off to make me feel better. Or lessen my feelings. Or maybe they just don’t know what to say.
And that’s bullshit.
Just say it sucks. It’s ok to say to someone, ‘that really, truly sucks. I would be sad too.’
You are human.
Ok I will raise my hand and say “it sucks.” I would’ve wanted that picture too. I still get VERY frustrated because I see my son fight for every little inch of every moment of every day and then there’s times were he just doesn’t want to do it.
But…. Cooper is only 4. I see that because I’ve had to volunteer for field trips for kindergarten and seen 4 and 5 your old kids do some things but have you put your hair out and they are supposedly typical:)
In my son’s ASD room there are four boys who are all eight and they are so different on the spectrum. One used to just make sounds and he finally did the same therapy my son does and he’s now starting to talk. He is super social except for having a thing for sniffing girls hair. There’s another boy that could easily be a gymnast and is learning language to go with his verbal skills. Then another boy who can talk, read like he’s 11 years old and play chess but he cannot understand the words on the page what they mean even though he can read them and when he speaks he just repeats everything everyone says. Oh and because of this don’t want to keyboard anywhere near him because he can tear it apart with his bare hands when he gets mad at it. All the boys including my son have their strengths and they’re very challenging moments .
I also would like to add that just because a lot of behaviors are happening that are super hard to handle and also he’s not reacting the way that all the other children are reacting doesn’t mean that he doesn’t know or understand what is happening around him. The way I see it is it’s like being trapped in your own body that is not cooperating and you just get so frustrated. I told my sons teacher the other day that he is like the life preserver at the school for the boys on the spectrum…you are one too for your son Cooper:)
I got my son’s preschool picture a few days ago. It’s terrible–he looks like he’s in pain. Not going to order any, and I was sad about that. Because I want a nice picture of my son to give to people. To put in the Christmas card. To frame. I totally get it. And even if I didn’t, I would still recognize that it matters to you and so it matters to me too.
As for Kindergarten next year, I would think about holding him back another year. My son turned 5 in June but is in K-4 this year. He was so far behind his peers, I couldn’t even imagine him in Kindergarten with them, when there’s a lot more expectations than there are for preschool. So I fought for him to be held back. And I don’t regret it. He’s finally making progress in his speech and language. Sure, he has a ridiculous far way to go still, but the progress is finally happening. And I’m convinced it wouldn’t if he was in Kindergarten, with expectations he couldn’t meet. I’m so glad we held him back. Just my personal thoughts.
OMG….your post was exactly what I went through on Oct. 5th. I sent my boy to his preschool picture day…button up shirt….gel-combed hair. Man he looked soooo cute! I even put the fifty bucks in the envelope and hoped and prayed that they could just snap ONE picture of him smiling. A little girl I know said she saw him at school that day taking his picture. She told me they were trying and trying to get him to smile, but he didn’t want to 🙁 Now I am in waiting mode for the damn pictures! Thanks for posting this. I feel you…hugs
Hugs mama! The struggles that no one tells you about!!