What Autism Looks Like To Me
I had a conversation with a friend this weekend about how everyone’s life looks amazing on Facebook. And how it’s all a load of shit. Nobody’s life is perfect. But nobody takes pictures of the sad moments. Or at least we don’t share them. Why would we. We don’t want the reminders. Or the questions from people about them. Or, pity.
I am sitting here looking through the pictures of Coops birthday party. He is overstimulated and extremely stressed out in most of them. I would not call it a success. And frankly, I’m glad it’s over.
As we gathered around to sing Happy Birthday I had this ‘fight or flight’ moment knowing that ‘if’ we sang the song he was going to hit himself in the head. I knew it instantly.
I didn’t want to sing that damn song but it was the only part of the birthday stuff that we were going to do. I just didn’t want my friends and family to see that part of autism. I hate it. It hurts my heart.
But we sang. And it was obviously over quickly. But is still really, really sucked.
And he hit his head and screamed the whole damn time.
So, as I picked the few pics to put on Facebook I considered putting the sad ones. Because that’s what really happened. But I didn’t. Ain’t nobody wanna see that shit. 🙂 So, I put the cute ones. No head hitting in sight.
Here are the real ones. Here is what I remember. Seeing the other happy kids and seeing Jamie hold Coopers hands so he didn’t hit himself anymore. Autism to me looks like a stressed out kid and an even more stressed out parent who is faking smiling and laughing. And I hate it.
I’ll end it like I usually do…it’s not fair.
We pretty much skipped Sophie’s 4th birthday because birthday parties stressed her out so bad. We did not sing “Happy Birthday” and we had just my parents and immediate family for the party . She opened presents in front of just me, my husband, and my mom. She couldn’t deal with a crowd. And this was the first time she actually even cared about the presents, so that in itself was huge for me. Most of it was hard, though, and sad. Sad to not have any hoopla or celebration over my girl. But that was the way she wanted it.
By her 5th birthday she had progressed so much, we had a huge, loud, overwhelming ridiculous party and I reveled in it. I went way overboard. It was such a sweet moment and the best part was she LOVED it. I pray that Cooper will love his birthday one day, too! I know this year is going to be HUGE for him, too!
You are so wonderful friend. Thank you!!!
You are a brave mom, Kate. Your posts are real, and I understand each of them fully.
I really do love reading your posts. They normalise so much of what I feel with the Pickle. There’s so much pressure already with our kids, then you add on large number is people who don’t really get it, social pressures, what we should be doing, what others think. Argh!!! X
Hi, I just found your blog- basically have read it completely! From one mom to another-Thank you! It’s nice knowing that I am not completely alone even though there are days when I feel that way. I seriously feel like I could have written half your posts myself. Birthdays are tough- my little one turned 3 in June. Hoping it gets better for the both of us. Thanks for putting yourself out there. You are so brave.
You are so very welcome! Comments like yours make it so worthwhile for me. Before I started blogging I felt so alone and even a little bit crazy. Find other moms has changed my life. Hugs to you!
I wonder why so many autistic kids hate “happy birthday”. We didn’t sing it for Mason’s birthday last year and won’t this year. He HATES it. When we go to other birthday parties I have to bring him in a different room.
*hug* what I see in your pictures that you are sharing here is a loving family, parents who care ALOT and who are trying to give their little boy some happy moments even if its hard. Oh…and I know its hard. I’ve done that too and looked at old birthday party photos and looked at my son’s face. Stress and anxiety rule his face. I am glad that you made it through but one of the things I can share is now my son loves birthdays even though its still overly stimulating. He wants a party with kids from school but I personally think it might be too much for him to handle still. I did it for his little sister when she turned 4 but luckily he was in therapy during all the game components and noisy free play and came in time for when things settled down for cake. My son remembers when he was 3 and was mad because his cousin kept budding in trying to unwrap his toys or play with his new toys and how he couldn’t use any words to stop him. He remembers when his sister couldn’t handle the candles lit on her cake and cried so hard and he went over and asked if he could help her and she cried and screamed YES YES YES and he did it. Why? Because he remembered when it was all too hard and intense for him. What do we usually do on his birthday? Take him to a splash pad or amusement park and let him just go for it with his sister because his day is in the summer and we have a very small gathering for cake and keep it short and sweet. We are looking at it as an endurance test that every year if he can just make it through. I agree…I hate how hard it is because we just want to have fun and fun should not be hard.
Oh boy, did this bring back memories. One of the first times I suspect my kid had autism was at his two year old birthday party when he started screaming and hitting himself in the head as we sang happy birthday. I remember this sinking feeling, knowing in my heart what was true but being in denial for some time to come. My son is now three and was diagnosed ASD in Sept. Doctors at first didn’t think he was on the spectrum either, so I know what that’s like when you go along thinking it’s something else, and then BAM, out comes the ASD. So glad to have found your blog.