Watching the Gap

My son is 23. 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 they will never be able to do as well as we do and things we will never do as well as they can.

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

Having someone who doesn’t get him can cause him really to use his voice, which is great, or to stop using it, causing staff to think he’s barely verbal. Or even for him just to go and do something without asking first! As a result, there is growth when he is away from us — and there is risk.

For all of Mark’s life, he was 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, who recently sent me an insightful note and asked me for feedback.

There is a lot I have opinions on, and I have a lot of emotion. I get too wordy as well. In the past month, 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 an 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 my hubby what to say or if he thinks what I want to say is okay. This time I sent the email and afterwards said, “Check it out!”

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

I have no doubt that, in spite of having to spend a long morning carefully scripting an email, I still had the privilege of breaks that many moms with kids like mine do not have — and peaceful moments that I did not have for decades.

I had no clue, however, that this might still be my life even after my adult son moved out.

Don’t get me wrong — the investment is worth it! I recently saw Mark with caring staff who have lots of potential. I saw a friend of his practically falling out of the car window to say “hi” to him.

But the morning after being with two different doctors and having two trips to Mark’s house and back due to a dental emergency, I did not expect to wake up and spend two hours crafting a five to six paragraph email.

Such is the life of the mom of a grown autistic child with disabilities.

If you don’t live it … you have no idea.