So many parents of special needs kids talk about the isolation they feel. I know I talk about it often.
It started early…around 9 months old for Cooper.
It’s gotten worse.
I have a NT super active three-year old, almost four-year old. Sawyer is by far my more challenging child. He is extremely busy. Even that is an understatement. He likes to be active and building and running and jumping. I am very much a boy mom so this works. I prefer messy outdoor and physical activities. We work well together.
I also have a severely autistic 6-year-old who refuses to play with toys, do any activity or even walk any sort of distance.
This is a challenge.
He is also a runner. He doesn’t understand safety or danger. So, as a result, he needs eyes on him constantly. Meaning he needs 1 person dedicated to him at all times. And, if we are at a pool or lake I prefer two people watching him. Sounds dramatic. It’s not. Cooper is extremely allusive. He wanders silently as well. There have been many times where I have looked away for a second and lost him.
I thought that maybe these challenges would get easier as Cooper got older. I was wrong. I can no longer carry him any distance. He wants to be pushed in a stroller and handicap strollers are well over $1000 and not covered under insurance. If we reach the point where he won’t walk anymore he drops to the ground like a dead fish. He turns to jello. A kicking, screaming pile of jello. It’s impressive. And gets us SO MANY stares from fellow people.
He is also so loud. And he can’t sit still. We haven’t been to a restaurant with Cooper since he was 12 months old.
There are other smaller challenges too. Places we visit must have WiFi. MUST is an understatement. There must be enclosed areas. I need to always have snacks for him. His certain sippy cup. Milk. I need to be able to change his diaper. He is 6 and 60 lbs. Doing this on the bathroom floor is disgusting.
It’s like bringing a 60 pound newborn out in the world. A newborn that can run and doesn’t understand safety.
Preparations to leave the house are extensive. Typically I am exhausted by the time we leave and the anxiety of what is to come makes me sick to my stomach.
We are home-bound most of the time. I feel isolated and claustrophobic in my own house. I dread the weekends most of the time.
I know that on both weekend mornings Cooper will wake up at 4:30 am. I know we will have a whole day before my friends and family wake up.
I know the days are on repeat. They never change.
Except now I have a super busy social toddler that doesn’t understand why we can’t leave the house. And saying, ‘because your brother is autistic’ only gets me so far.
I can see the resentment building already between this brotherhood. And deep down I get it.
We are trapped. And I see the future. I will set Sawyer up with activities and play dates. He will continue to socialize and grow. And I fear that I am going to miss it all. I will be here. In my home. With Cooper. Alone.
The summers are better.
In the summer we are able to go to parks. Some parks that is. Small, local ones. Not big, fancy parks. I can’t keep my eyes on both boys if there are too many play structures. I have to chase Cooper and hope Sawyer will follow behind.
The winters are terrible. Absolutely terrible.
Today in Minnesota it is -2. So freaking gross. We are on a 7 days streak of below zero weather. It’s been tough and I am really feeling it.
Cooper hates to be cold like most of us do. He also doesn’t understand snow or what to do with it.
So, we are home-bound for 4 months every single year.
If Cooper wasn’t autistic we would go to the Children’s Museum and malls. We would go on play dates. But we can’t. I’ve accepted that we can’t. But holy mother raising a NT toddler with a special needs brother is giving me a run for my money.
Cooper doesn’t get bored. He likes his house and his Kindle. He needs something to drink and eat and to have his diaper changed. That is it. He is content.
And the rest of us are going absolutely stir crazy.
Yesterday Sawyer and I dyed Easter Eggs. We made a homemade hat. We played with Play-dough. He gave his toys a bath. It was long. We survived though.
It started over today at 5:05 am. Sawyer and I made a homemade car and sensory balloons for Cooper.
I’ve noticed that this isolation is causing Sawyer to be extremely clingy with me. He has to always be touching me. It’s a lot.
I am taking today off from the boys. I need it. I need some respite as they call it. I just need a break.