Sharing Jack

I had the honor of meeting a fellow ALD mom on Friday. I say “meeting”, but I’ve known her for a while, and it was more like reconnecting with an old friend. Her family’s ALD story is very different than ours, but she and I are both fluent in a language that few are privy to. I walked away feeling so grateful that she had reached out and looking forward to our next visit.

While we were catching up, she asked how Jack was doing. She knows his life is complicated and as an ALD mom – and an OT – she understands more than most people what complicated looks like day to day for families like ours. I shared with her how well Jack is doing, but how different it is now that he is getting a bit older. She asked if we would ever consider a residential facility for him.

This question used to feel like a punch. The idea of having Jack living outside of our home seemed crazy, callous, even irresponsible. That judgment has faded. I have friends in the special world that have found wonderful places for their adult children to live. Their kids are thriving. It can be the right choice for the child and for the family. We are not nearly ready for a dramatic change in our living situation, but we are starting to share Jack. A little.

With me in school and Dan busy with work, we have tried to fill Jack life with fun activities. Jack goes to a wonderful adult program three days a week. We trust that he is safe and well cared for, but we don’t really know what he is doing from the time his bus leaves our driveway to when he returns home 7 hours later. Jack has afternoons with his new friend/caregiver, Ava, and his Other Mother, Monica. Jack also spends two days a week with Maria and her family. They usually spend those days at their house cooking and eating and having adventures. This week, Maria and her family picked Jack up on Thursday and we didn’t see him until Saturday afternoon.

Dan and I have always managed to sneak away a few times a year for a needed break, but this time it was Jack packing a bag and getting away. It felt so strange for Dan and I to walk by Jack’s room in the morning and see his bed empty. It felt strange not see him perched on his stool at the kitchen island laughing at his Impractical Jokers. But I need to be honest — we did enjoy the time alone together AND Jack loved his time with his other family!

We are a long way from being ready for a full-time placement, but I think time with his other family every now and then is perfect!!! Thank you Maria and fam!!!!!!!!

Love, Jess

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