Today we saw a glimmer of the child we have been missing for over a month now. I’m still not sure what was different about today for him, but I maybe some of the things we did today helped. He woke up in a fairly good mood and got dressed relatively easily–lots of praise for that. Our glimmer of hope started pretty early.
It was my first day back at work. A day of workshops. Well, it was only one workshop, but it was a day long workshop. Sounds like fun, right? My point is, my going back to work is different for me, but not really different for him since we’ve been keeping him in daycare during the summer so he’s got a consistent routine. Perhaps my being awake and in the living room with Big Guy while he was getting ready helped.
We also went back to the pediatrician for a med check appointment today. Since my lunch break coincided with the (supposed) appointment time, I joined The Manager in the doctor’s office. We’ve got big issues to take care of, so I wanted to take part in the discussion. Aside from having to wait over an hour past the actual appointment time, I felt pleased with the appointment because he actually seemed to take our concerns more seriously this time around.
Here’s where we’re at (in bullet form):
- Reducing the amount of medications by one. The stimulant meds seem to do little to no good, so why take them? We’ll see if removing them has a negative impact on him…
- Increase the dose of the one medication we’re sure helps, as it’s likely not at a good therapeutic dose anymore. It’s obvious when it’s not present in his system because he’s more out of control than usual, but it’s clearly not doing all it can.
- Referral to a place in Jacksonville that works with sensory integration specifically. It’s a bit of a drive for us, but if it helps, will be so worth it.
- Discussion of trying Methyl-B12 shots. Read this article by Dr. Neubrander for more information, but Methyl-B12 is supposed to work to help improve executive function, speech and language, socialization, and emotion. All things Squeaker needs help with. Doctor wanted us to research it and think about it. He’s got one child trying them now and the parents have been really happy with the results. If any of you have tried this, please comment and let me know.
- Discussion of taking off one more medication that we’re not sure is doing anything. That’s on the table for the next visit.
- Let the doctor know that I was pursuing help from a counseling agency in town and agreed to make sure they collaborate so that everyone’s on the same page.
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So that’s where we’re at.
And we had a terrific night with Squeaker. The kind of night that reminds us of how much joy he brings into our lives, really. It was not without its challenges, but overall? Pretty easy.
I actually could bribe him to do what we wanted him to do by offering to spin him. He loves it when I spin him. The faster the better. He likes getting “busy,” as he says it. So, he got spun 3 times. It felt awesome.
And then we went for a walk. Instead of taking our usual route, which has been filled with tantrums at all the same places, The Manager came up with the idea to take a different route to throw things off course a bit. It worked (mostly). We took the cul-de-sacs in the neighborhood, pointed out new things to him, and he was so distracted by all the new sights, he mostly forgot to throw fits.
I pointed out a house that had a bunch of cacti in the back yard. That registered a slight reaction in him, because he’s really only seen a Muppet version of cactus from Sesame Street before. We also saw a millipede crossing the road. He really wanted it to go under the stroller, but it did not comply. He actually let that go and simply said goodbye to it when we continued walking.
Then, toward the end of the walk, he got the best surprise. First, we passed a house with a yellow Beetle car. One of the old model Volkswagen Beetles. I should mention that the only vehicle that even comes close to pleasing him as much as a Mini Cooper is a Beetle car. He was so excited he said it 3 or 4 times.
So then we came to the big surprise. Just a few houses down from the yellow Beetle? A blue Mini Cooper. Jackpot! It was toward the end of the street, in a cul-de-sac, so we actually went past it, turned around, and went past it again. Also, there was what he calls a “Monster Truck” in one driveway, which added to his joy. For some reason, when we stopped so we could try to get a picture of him near it, he threw a minor tantrum. But, it was minor and went away pretty quickly.
On the way back to the house, he listed all the things we saw on the walk that mattered to him. Cactus, Beetle car, Monster Truck, Mini Cooper.
Yes, it was a good day. The kind of day that sparks a small glimmer of hope that tells us that everything will turn out fine. I could go for another one of these days tomorrow. I guess we’ll see what the future holds.