On Monday the monkey woke up in a bad mood. The night before he had showered and went to sleep very upset. Showering is still a huge struggle in our household. He woke up remembering the night before. Every time it is shower night, he will get upset and take off all of his clothes. It is a struggle to calm him down and make sure he puts clothes on. We’ve learned to let him self soothe and when he is finally asleep, we will sneak in and put clothes on him. Sometimes we are successful but many times, we have to keep coming back since he wakes up and takes off the clothes. Monday morning, he woke up remembering the night before. The first thing he did when he woke up was to take off his clothes.

We kept talking trying to reassure him that he would be okay. Telling him he needed to wear clothes because the bus was going to be picking him up soon. This struggle lasted over an hour. The monkey struggles a lot. His sensory issues are difficult for him to handle. We expect kiddos like the monkey to be part of our world. He is expected to wear clothes even though he struggles with it. We expect him to go to school, to learn to communicate with us, to follow the rules of standing in line, of waiting his turn, of eating what is given, of working on math, and science and everything else. He is expected to fit in the box that was made for typical kiddos. It is not expected for us to fit in his world, but the other way around.

Have you ever been to a place where the music is too loud? Or been driving when you see a vehicle in front of you with the lights too bright and it hurts your eyes? Where you are getting on your car and the noise is too much? Or walking into school/work and the lights are hurting your eyes? This is what our kiddos go thru and have to deal with on an everyday basis.

And we are forcing them to abide by our rules and standards. What a difficult weight they have to carry.

We tried reasoning with the monkey as much as we could hoping he’d be able to wear his clothes by the time the bus arrived. We kept trying to comfort him and helping him to calm down. A few minutes before, he finally had calmed down enough to wear clothes. But as he is getting on the bus and they are buckling his seat belt, he took off his shoes. I asked the driver if it would be okay to let him be without shoes. The driver didn’t have a bus monitor that morning and I didn’t want him to get distracted as he is driving. He can wear his shoes when he gets there.

Our amazing bus driver agreed. He told me not to worry, that shoes were optional in his bus. Our driver is beyond understanding of our kiddos. He is always reading different books in his attempt to understand how to help them more.

I sent a message to his teacher letting her know of the issue from the morning and how we had struggled. I let her know I was worried and wanting to know how the monkey was doing. She said that when the monkey arrived, he sat on the steps of the school. He was told he couldn’t go in until he had his shoes on. When they told him that he would not be able to get iPad time if he didn’t wear his shoes, he finally agreed that iPad time was much more important than the fight. And he gave in.
And he did great the rest of the day.

And sometimes, these battles may appear to be small, but are huge victories. He is still fighting to adapt to ‘our’ world. And we are hoping that we, as a community, are able to understand and adapt to his.

In this month of April, where autism awareness is important, lets also remember that autism acceptance is the goal.