Autism Hurts

Here I am. The same cycle again. A period of hope followed by a crushing blow that ends in tears. Any special needs mom will know what I’m talking about. My autistic son has made such strides in the past couple months. We are actually talking about when to graduate him from ABA therapy. I’ve been so happy and optimistic. I’ve been able to focus on other issues that I care about. I’ve been able to go to the store, be a little more spontaneous (albeit slightly) and spend less time planning out my life so meticulously. It’s been wonderful! So wonderful that I start letting my mind dream about a day when all this autism stuff might be in the past. A distant memory that someday might be funny to tell my grandkids. Tell them they’re dad used to be really quirky and hilarious. Then today happened. Something that seems insignificant to many other people, I’m sure.

I surprised my son with a Jurassic World shirt this morning. He was so thrilled because he is obsessed with dinosaurs right now. He wanted to put it on immediately! He wanted to go show his dad and his brother. When I told him it’s time to go to the daycare (which he does every Friday morning), he asked me to tell the teachers that he has a surprise. Now, this request is very significant for him. One of the things we are working on with him is being able to understand upcoming events as well as recall past events. So, the fact that he was able to understand where he was going, who was going to be there and having a desire to surprise them with a new shirt was a huge breakthrough for him. We got to the daycare, he leapt out of his chair, opened the door by himself and headed inside. I went around to the other side of the car to help my younger son out feeling thrilled about his desire for independence, which is also something we are working on. I walked in feeling like this day was going great and that’s when it changed.

I saw him standing in front of the desk showing his shirt to the woman working. He was politely saying, ‘excuse me, excuse me.’ (This is also a skill he has been working on.) She showed no interest and he began to look disappointed. I told him told, ‘hey don’t worry. I’m sure the other teachers would love to see your shirt.’ I got them checked in and the woman opened the door to let them in. My son got into a raptor position to go show off his shirt and the woman stopped him. She said, ‘you can’t act like a dinosaur in here.’ He then straightened his posture and saw a teacher he likes. He crouched back down as a dinosaur to show her his shirt and the woman said, ‘hey, that’s not acting like a boy. You can’t act like a dinosaur here.’

He looked back at me and I knelt with him and asked him if he could leave his dinosaurs at home today. He said yes and walked in. I looked at the woman and she said that he always acts like a dinosaur, walks around and scares the other kids. I could feel my ears getting hot, my throat getting a lump. She’s right. He does act like a dinosaur when he’s happy. He does scare other kids. What she doesn’t know is that he works 20 hours a week trying to learn more appropriate social skills. Acting like a dinosaur is his way of interacting with his peers. I understand that it isn’t ideal. I told her, ‘I know it’s a problem and he’s working on it.’ I think she could tell I was upset because she added it’s nice to know what he likes though. I stared at my hands while I was signing the log. I was doing my best to keep from crying.

I got into the car and burst into tears. I feel so hurt. I saw him use all the skills that he’s been learning. I saw him thirsting for interaction. To see him shut down like that was so hard. Why didn’t I pick him up and take him right home? If there’s one thing I’ve learned about having an autistic child it’s the fact that the world isn’t gonna change for him. These situations will actually help him learn what is socially acceptable. It doesn’t change the fact that it is incredibly painful to see him misunderstood. The only thing I can do is to make sure he knows that I love everything about him. He’s the best little dinosaur around. I wish other people could see that too.

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