Just Another Day: The Life of an Autism Mom

We spend a lot of time in the car, driving from home to home, or just around listening to music.

My son is 22. He will likely never be fully independent, but he lives in a loving, beautiful supported living community. 

I’m grateful that he has this home through the week and our family home on the weekends. He needs both places. There are things the community will never be able to do as well as we do and things we will never do as well as they do. 

John and I know Mark intricately. We also know autism well. There will always be turnover where Mark lives and new life skills coaches, which can be chaotic — but we cannot offer him some of the dynamic experiences and the breadth of peers and guides that he gets there. 

Being with someone who doesn’t get him can cause Mark really to use his voice or to stop using it altogether — he may even simply go off and do something without asking first. There is growth when he is away from us — and there is risk. 

For all of Mark’s life, he has been either with me, or I have been on call. I don’t think I realized how much I would still need to manage his affairs even when he was living away from me. 

We have a new BCBA at his residence, and she sent me a great note, asking for my feedback. 

In the past few months, I had shown an emotional and wordy side that was new for me and way too much, but it came partly because I had for too long not commented when I saw worrisome trends.  

It was important at that critical juncture that I be thorough, passionate but not over-emotional, and state my points concisely. When I got the email inviting me to comment, I knew it would benefit us all for me to give more than a quick response. 

Too often, I ask John, my husband, what to say or if he thinks what I say is okay. This time I sent the email and said, “Check it out!” 

He replied, “Your email was excellent. Lot of content concisely expressed.” And John is the king of concise!

I had no doubt that in spite of a crazy long day and having to spend the next morning carefully scripting an email that I still had the privilege of respite that most autism moms do not have. 

I had not imagined, though, that this might still be my life as an autism mom after my adult son moved out. 

The investment is worth it. I saw Mark with caring staff who have lots of potential yesterday. I saw a friend of his practically falling out of the car window to say “hi” to him.  

But that morning, after having Mark at two doctors and having three hours of driving due to a dental emergency, I didn’t expect to wake up to spending two hours crafting a five to six paragraph email.