I’m old enough to remember 45 rpm records. On one side there was the recording of a major hit, usually a #1 song. But then there was the flip side. The song on that side wasn’t known well or at all, usually, and wasn’t talked about nearly as much as the other popular song. Everyone wanted to listen to and talk about the fun, well-known song.
I started writing about Aaron and our life with him over 10 years ago. My desire was, and still is, to show the amazing way that Aaron thinks and especially speaks. I wanted others to see the absolutely unique and often hilarious way that Aaron expresses himself in order to gain an appreciation for all those with autism. I love sharing our life with Aaron, especially the laughter and the wonder that he brings to us.
Yet there is a flip side, just like those 45 rpm records. I have written about it many times over the years but don’t want to focus on the negative. Just like the popular #1 song, it’s fun to hear the funny side of our life. But that flip side is just as much a part of Aaron as the other preferred side.
Yesterday morning the song on the flip side was playing loud and clear at our house. I didn’t turn Aaron’s record over. Believe me, I far prefer that first side! But turn over it did!
For some background, most autistic persons have obsessions that they have a hard time…or totally cannot…control. Some obsessions seem to be permanent, and others might come and go.
One cannot tell an autistic OCD person to “just get over it” when he is obsessing over his obsession. I may as well tell one of Aaron’s friends in a wheelchair to just climb up our stairs. It’s not going to happen. And neither will Aaron “just get over” the angst that he experiences when one of his obsessions becomes disrupted.
During the past two years, a staff member at Aaron’s day group has taken him to Quik Trip to buy whatever he wants to eat. It has become THE highlight of Aaron’s day. He is completely fixated on this fun, simple outing. Often some of his friends go as well, which makes it even more fun for Aaron.
So, there is the obsession.
Now for the disruption. A meeting.
Meetings to discuss Aaron’s services, plans, health, etc., are a necessary part of every year.
Aaron hates meetings.
The only meeting he likes is the one with his case manager because we gather at Carlos O’Kelly’s for lunch. Aaron cares not about one word that is said at the meeting. He is too busy eating yummy food and trying to monopolize the conversation.
I had told Aaron that we were having a zoom conference on Wednesday morning at his day group. I told him it wouldn’t last long and that he wouldn’t even need to be present for the entire call.
But on that morning, nothing mattered but Quik Trip. He was super angry before he even got out of bed. Nothing I said helped him. He was sure that QT was out of the question…sure that this dumb meeting was going to keep him from QT…positive that his day was completely ruined with no QT…very angry that he had promised Myra she could go to QT but now it wouldn’t happen…what would Antoine think about not taking Aaron to QT…
On and on and on he went, accelerating into yelling. He broke his closet door. He hated this meeting. He hated me.
Then he cried. If Aaron cries, he is genuinely and deeply upset.
I texted Barb at Paradigm, who can calm Aaron like no other. She facetimed with Aaron, and he started settling.
As I fixed my hair a short time later, Aaron walked in the bathroom, fresh tears in his eyes. In a voice thick with emotion and with total sincerity, he said, “Mom, I’m sorry.”
Then tears filled my own eyes. I was spent but I was so touched at his apology, especially since I had not asked for one.
I gave him a hug, which he allowed to last for maybe three seconds before he squirmed out of it. 😊
So why am I telling you all this?
It’s not because I like talking about Aaron’s flip side. But this is our reality, especially Aaron’s reality.
And the reality for so many other families that I know.
Seizures are hard. Other health issues are hard.
But behaviors…they are in many ways the hardest. What a toll they take on the Aaron’s of the world, and on the families who care for them and love them.
And on the staff at all the places that also care for our special ones. Imagine having dozens of persons together, many of whom have these OCD issues and meltdowns. I saw one yesterday when I was at Aaron’s day group, and I saw the response of the staff. Being spit on and kicked is not pleasant yet these amazing people stay the course.
Seizures cause brain damage that worsen the situation. Seizure meds compound the problems with side effects that include worsening behaviors.
How complex these things are!
How life-altering for the families!
How we love Aaron!
We hurt when he hurts. We struggle when he struggles. We mess up and need to ask his forgiveness, as well.
We all need grace, God’s and each other’s.
I have to fill out this behavior chart about the whole hard ordeal. Stats and records must be kept.
What can’t be measured in any metric or logged on any chart is the love we have for Aaron and that he has for us when the dust has settled and the tears are gone.
I wish I could check a box that explained his sadness at his own behavior. One that would record his heartfelt apology, the tears in his eyes…in my eyes…and the lasting impact that yet another hard moment has left with us.
I’m thankful that God knows and that He gives His grace for each day.
And thankful for our complex and amazing Aaron…both sides.