Necessary Determination
My son smiles again, and my love for him and my gratitude for this moment are almost painful.
We were very, very close to placing him, even temporarily, in a residence outside our home, but somehow, divine timing brought just enough useful intervention into our lives to give us a moment to get our footing, and enough time to find the right support for him. Now, according to his new DSP, he’s “one of the easiest clients I’ve ever had.”
But…we are changed. Our nerves are shot. We didn’t bounce back from this past year as well as we once might have, and we know that we won’t have the same stamina for another round when it comes. And it will come.
We learned that ultimately, he was in pain; First with an ear infection, and then with some unexplained gastrointestinal problem that still hasn’t completely resolved nearly 6 months later. And along that journey, we discovered a lurking, as yet non-painful kidney stone that we were finally able to address this past week. We had worked for years on learning to verbalize internal sensations. It was a huge win that Jackson could say, “I’m hungry,” or “ear hurts,” or “belly hurts,”, but he had lost that in his months without support of any kind, anxious because he was without friends or purpose overnight. Afraid that every dysregulated moment would mean he would “lose” something else. He was terrified and confused, and he began shutting down. Then came the pain, and he was more trapped and afraid, and the cycle escalated.
My compassionate compatriots in Severe Autism, the other moms of HomeLife 21, were my support and saviors as we made our way through. Some because they were themselves in crisis and could understand, some because they were not and had the bandwidth to think rationally when I did not. I knew I would do the same for them.
Sadly, that day came sooner rather than later, and I was quickly called upon to support one of my HomeLife 21 sisters, who is not out of the woods just yet. But she is the strongest woman I know, and she will get there.
All of this has only strengthened our resolve to make the residence we dream of at HomeLife 21 a reality as soon as possible. We are aging, we are tired, we are scared, and most importantly, our sons deserve better. They deserve caregivers who get regular breaks, who are not in their 60s and ultimately 70s, who are well-trained and well-paid, and of whom there are more than one or two.
It's not easy when we don’t have all hands on deck, but we are necessarily determined. Now, as we work to address the few remaining uncertainties, we have hopes to begin looking for our property within the year. We are ready. Our boys are ready. We must be.
We will continue to share our process and journey with all of you. Please keep an eye out for our messages, posts, and emails in the coming months. We will be reaching out with news, events, and ways you can help and learn more.
We are grateful for all of your support, encouragement, advice, and experience. We hope you had a Happy Thanksgiving.