As we move through the days and they turn into weeks and months, the hardest realization we have come to is that we will never be “normal” when living with Aspergers.
To many people, my son is normal. He is a normal 5 1/2 year old doing normal things. Many were surprised at our diagnosis. Someone even said “are you sure they put that diagnosis on the right chart?”
To us, life is seen through different lenses. I’d like to compare our vision as those goggles you wore in highschool that taught you what drunk driving would feel like. You know… you never could quite figure out where EXACTLY you were stepping and just when you thought for sure you had it figured out you were proven completely wrong.
We will never know the feeling of going to the county fair and eating ice cream stuffed cookies and riding rides. We attempted to go last year and it was, for lack of a better word, a complete disaster. Aiden is terrified of anything out of his comfort zone. Not like, ehhh… that’s kinda scary but I’ll try it but screaming and crying in complete terror and shaking. We had never gone before so we bought $40 worth of ride tickets and used zero after getting stuck in a thunderstorm and standing inside for 1 1/2 hours.
What brings this up is our trip to the pool today. I feel as though my life is a walk on eggshells. Eggshells that are crumbling beneath my toes no matter how gently I tip toe. They are slicing my feet apart with their fragile edges and demanding that I walk faster, walk slower, walk on my hands or not walk at all.. All at the same time. Like playing “Red light, Green light” on eggshells on a tightrope on fire with no end.
As Aiden gets older, the more interesting our life becomes. Partly because he lives in my home 85% of the time and his Dad’s home the other 15%. Just when we get a good routine down BAM he leaves and we have to start over.
Oh right… the pool…
Aiden asked me ALL week to go to the pool. Today was finally the day. He harped on it all morning. He was super excited and we could tell. We got there right when they opened so we could grab a nice covered table. We quickly made our way to the kiddie section (1-2 feet deep) and hung out there for a while after Josh was able to pry him off of him like a spider monkey. Aiden was obviously scared because he does not know how to swim. Having never touched the bottom before he was scared that he might sink.
We noticed the other kids had life jackets and you could rent them at this pool. We thought it would be fun to rent one too for Aiden so that he could venture out into the bigger pool for a bit. We asked him, he was EXCITED!!
We went to the counter where they rent out jackets and were told that we had to leave our photo ID in exchange for a jacket. Meanwhile, Aiden is doing his usual happy dance with growing excitement for the life jacket.
We did not bring our wallets.
We did not have a photo ID.
I begged the 15-ish year old girl to let me have one anyways.
I told her she could keep my keys instead if she would please just give me a life jacket.
What I wanted to say was “Listen, Girl! My son is about to flip his shit if you don’t give me a gosh darn life jacket right this moment. Please! I am begging you. We paid $12 to get into this f*cking place and I just really really really need that life jacket. Not because I want the jacket. This isn’t about the jacket. This is about the rest of my day.”
I broke the news to Aiden and his eyes, like I expected, filled with tears and the day was ruined.
just. like. that.
People with Aspergers don’t exactly know how to use the correct words or actions to match what they are feeling. He normally will begin punching himself, saying he’s a bad person and crying. He often tries walking away or repeating “this is not my day. it’s the worstest day!” He also will scream, moan and scratch at us. When he was little I compared him to a lion.
We finally convinced him to get in the big pool without his life jacket. He clung to us like it was life or death. He would not have fun. He wasn’t having fun. He was done. I could tell that he was really trying to be okay with everything. I could tell he was disappointed. I could also tell that he was confused. Most people can probably explain this situation to most almost 6 year olds and they’d be over it and playing in a second.
We stayed at the pool for about 1 hour. Paid $12 and swam for a total of maybe 25 minutes.
What the life jacket meant to me:
Splashing and Sunshine
It was never about the physical life jacket. It was about my sons behavior for the rest of the day. It was about bedtime and how he is going to scream at me. It was about our ride home and how he continued to repeat himself over and over still about the life jacket. It was about how when he wakes up from this well deserved nap, I can assure you he will still be talking about the life jacket.
It’s like a circle. It has no end. Once he is in it, it does not stop. Until he falls into a sweet sleep.
And I love him.
Circles always were my favorite shape anyways.