I went over to our son’s group home to pick him up for an overnight here. Nice evening, got his hair cut, had lots of pizza with friends, the good things in life.
But the big news is what happened when I picked him up. A staff person at the house said, “Joey, your dad’s here. Get ready to go.”
Lo and behold, Joey went into his room and came out a moment later HAVING PUT ON HIS OWN SHOES.
Yeah, those black ones on the top of the pile! They were on his feet! All by themselves or something!
That’s something we weren’t able to get him to do for 23 years, and in just a few weeks of living with a bit of independence (and housemates who won’t be manipulated into doing it all for him) he can “shoe” himself.
And that’s not all. He’s using pronouns and grammar more appropriately.
Most of all, he’s smiling a whole lot on these visits. He’s not disoriented by changes in routine like he used to be.
Next week’s his 24th birthday. Looking forward to having him over for a celebration.
I need you to soothe my head
Turn my blue heart to red
(the late Robert Palmer. More later)
Our allies in care giving are precious. The folks who coordinate and provide services to our son with autism (Allies! Yay!) were quite helpful with recommendations for a new primary physician (Allies! Yay!) to see our guy. I want to distill some of that experience in ways that I hope will be useful.
Let the person in your care help direct the search. Note his/her day to day preferences. Is your loved one more comfortable with men or women? Younger or older adults? Will the distance to the doctor matter – how does the person in your care tolerate travel? Any and all subjective impressions can help you seek out the right doctor.
Know your needs. We wanted a younger doctor who with potential to take care of our son for years to come. We wanted a practice where every appointment would be with that actual doctor, not a Physician’s Assistant. (That’s not a knock on PAs, it’s just that our son does better with familiar people rather than serial strangers).
Ask around. We do it all the time for all kinds of goods and services, so ask for recommendations. We made an appointment to meet a particular doctor based on recommendations from professional staff we trust. Friends who are caregivers can give you good insights from their experiences, too. (You can tell I’m an aging caregiver. I prefer old school “human intelligence” gathering to online stuff like Yelp. I want to know the source of a review or recommendation, and I’ve had professional friends burned by crummy reviews made up by crummy people.)
Schedule a meet & greet. Start building a relationship before there’s an emergency or acute problem. We made an appointment for our son just to meet the new doctor. I don’t want to be flippant about this. I realize that for some of you, insurance issues might inhibit you from making appointments of this sort, especially if you are going to check out more than one doctor. Our son’s disability coverage made this doable for us.
Ask questions and share info. Don’t consider any question rude or stupid, or any anecdote about the person in your care to be trivial. My wife was clear about our son’s resistance, up to and including violence, to short tempered people or while in a post-seizure state, and she asked the doctor about his ability to remain calm and patient.
Observe. The person in your care needs to be at the meet and greet. You will sense dynamics with the service provider right away. The new doctor did the normal stethoscope thingy on our son’s back and chest. Our son pushed the stethoscope away – but with a big smile. That is our son’s way of bonding. He goofs on people he likes. He wasn’t pushing it away in discomfort or anger, but in order to establish a kind of play time with the doctor. This was a good sign.
I hope some of this is helpful. There’s the saying about “being your own advocate” when interacting with the medical world. Caregivers need to practice that for those in our care as well.
OK, I said I’d get back to Robert Palmer. Here’s your dose of 70s music: