It Takes a Village to Live this Autism Life

Ali Family Autism Truths #6 – April 6, 2016

In the span of three weeks, D’s two trusted, tried and true therapists/care givers both gave their notice. One took a different job in town and couldn’t fit after-school home therapy for D into his schedule anymore. The other took a job out of state and is moving on to new adventures.

I hate seeing good therapists/care givers go, though I always wish them well. When we first started bringing therapists and caregivers into our home to help D more than 12 years ago, it was a difficult adjustment for all for several reasons:

1. All of a sudden there were people in and out of our home, not only working with D, but seeing all of us on good days and bad. It didn’t matter when we were in one or two-bedroom apartments or the more spacious home we are in now. It was still an adjustment of having people in and out of our home.
2. How do you trust your beloved child to another person? Nearly every therapist or caregiver we’ve had in our home to be with D have grown to be like family. The shortest time one spent with D was about three months. The longest was two to three years. But regardless of how we grew comfortable with each one, there was still the issue of trust. If they were out with D doing some community-based instruction (CBIs) and D had a meltdown, would they be able to handle it?
3. Would they follow the agreed-upon protocols to help ensure his safety? And, would they bend said protocols, if need be, to again help ensure D’s safety? We had one therapist, whom we loved dearly, who was more of a stickler for the rules of ABA and the guidelines we had established. More than once, when D was in the throes of a meltdown, I ran upstairs to intervene. The mother in me couldn’t take it.
4. The training and the figuring each other out. By now, I’ve figured out the conversations I need to have and the things that are really important for each new caregiver or therapist to understand about D. But still, there is a learning curve. You can never really “train” someone to understand someone else. That comes with time, working together and asking questions. And the whole process, which repeats itself over and over, can be rather exhausting.
5. The letting go. No doubt D has grown extra close to some of his caregivers over the years. I can tell who he really likes and looks forward to seeing, and who he is ok with. And so, when any one of them leaves, I sit down and explain it to D. Does he understand me? Does he get it? I think so. I can tell by how he is with the next therapist/care giver who comes into his life.
6. The intimate stuff. Our goal has always been to give D the tools, to help him learn how to help himself. I really don’t want others (outside of family) to assist him with anything bathroom related, and that’s a challenge we continually face. One of my many prayers: Dear God, let D be the master of his own body and take care of himself.

I wish it could just be me. Or I, his Baba and his siblings who help support D and help teach him what he needs to learn for greater independence. But as the old adage goes, it takes a village. D’s village is good. D’s village is strong, with only a few weak links over the years.

But D’s village fluctuates all the time. And, for a guy who craves his routines, that’s tough. Today D’s been all out of sorts, and I’ve been racking my brain to figure out why he’s so on edge. He’s not feeling it in the biggest way today.

Is he in pain?

Is he coming down with something?

Is something irritating him?

Or, is it a reaction to his therapist/caregiver’s last day, and the goodbye she said to him? Because the truth is, he knows more and feels more than anyone understands.

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