We were so excited for our week of therapy at Shriners. Everything else in our schedule was canceled and all three of us headed to their Oak Park Ave location with our minds and our hearts open to new people and new ideas. But after the first two days we felt like law students who showed up to the first day of school without our syllabus, totally unprepared. While Aleck continues to make progress in his therapy sessions and daily activities we certainly weren’t ready for all the things that we haven’t been doing to continue his progress. Delivered with reassuring statements like; “you’ve been doing great, you’ve been doing everything right” we could see the therapists trying to hide their shock at our lack of ADL’s, Activities of Daily Living, in his daily routine (I had never heard this term before Shriner’s and that’s shocking in and of itself). Even though we’ve been celebrating his upgrade to 20 bites by himself, it’s the smallest baby step in what’s going to be a very intense road over the next 6 months to get him at least closer to where he needs to be developmentally. And since he’s such a smart boy they expected even more from him, to rise to the challenges faster and to figure out what works for him even faster. But on the flip side, they were standing by with techniques and tools to help him get there. They sewed rings on his AFO’s so he can take them off and put them on. They suggested we sew extensions on the velcro on his shoes so he can put them on and take them off as well. We worked on how he would get his socks off, sitting up with one leg crossed over the other like the number 4. We worked on how we would take his pants off, on the floor, pushing them down and then wriggling out of them. We worked on using a spoon and they handed us modified spoons and forks, modified plates and bowls, to make the process easier. We worked on cutting with scissors and they gave us modified scissors, we worked on playing with cards and they gave us a modified card holder. So even though at the end of it all we felt exhausted, deflated, like all the wind and energy had been sucked right out of us, they were standing there with all of the tools to help us through all of this and with a “Can Do” on steroids attitude. I mean how could we not be pleased with our experience? And we were, but it shone a very harsh light on what’s severely lacking from this top ranked hospital we’ve made our home base. None of the tools or ideas mentioned above came from the RIC and that’s kind of sad.
Now that we’ve taken all of these new tools home with us the challenge is how to prioritize, what to attack first, when to push and when to let go, and it’s not been an easy time. On one hand, developmentally, Aleck is at a point where he needs to learn to do a lot of different things independently regardless of his disorder. At this age they are learning to feed themselves their entire meals, they are learning to get dressed, they are learning to brush their teeth, they are learning to go potty. It’s this time when they work on all of these skills to help prepare them for kindergarten. However, in this house, none of these skills progress organically. Each one needs to be taught, step by step. First thing in the morning and then again at night Aleck is learning that we expect him to take his pants off. It’s a group project but he must participate and I’m even scheduling more time in the morning to let him lay on the floor using his many distraction techniques while I walk away from him repeatedly, until he finally buckles down and tries to take off his pants. The other part of dressing we are working on right now are socks. He can’t take them off yet without help, the left foot is much easier than the right foot because of the torsion on his right leg. We’ve tried to encourage taking socks off since he was a baby but it’s just not something he’s been very interested in so now it’s time to buckle down. But we can only handle so much screaming, crying, and fighting in one morning. If we had nothing else to do we could easily just leave him on the floor until he figured it out by himself but our lives, and no one else’s I believe, work that way. There are places to go, appointments to keep, and bedtimes to stick to otherwise there’s an even crankier Aleck the next morning.
Feeding, on the other hand, is progressing quite nicely. He’s up to 20 bites by himself and very often more since we don’t keep count out loud to encourage as many bites as possible. The clean plate club is a regular occurrence in the house and I find that at 4:30pm everyday I no longer feel like running away from my own home and family. He’s even figured out how to take sips from his straw sippy cup while it’s on the table. And even better, during milk time, we now put his Batsuit on him half way through and he can drink it himself using the special blue ball his old OT, Kate, gave him to help with his bottle. He was never interested in giving himself the bottle but we’ve encouraged the sippy in such small steps he looks forward to putting on his Batsuit and drinking it himself, often shooing me away with that common cry of his peers, “I want to do it all by myself!” And sometimes, if we are really lucky, he wants to keep the Batsuit on to play or to eat his dinner with it on. He understands that it helps his arms, he talks about it, and he understands that it’s easier to do a lot of things with it on.
On Monday we are having a meeting with our team at the RIC and we are coming in with two objectives. First we want to talk about Aleck, set goals for him, discuss strategies to accomplish those goals, discuss obstacles and upcoming treatments. Next we want to talk about the program at the RIC. It’s tough because we don’t want to be offensive, we don’t want to attack them, and we don’t want to come from a place of anger and frustration even though we are very frustrated. There is such a huge discrepancy between the programs but it’s not right to expect one hospital to be anything like it’s competition. However, there is also a huge discrepancy between outpatient at the RIC and inpatient. It was a huge shock when we first started with them and clearly the outpatient program needs to steal some tactics from the inpatient program. This way we aren’t comparing apples to oranges and we aren’t setting ourselves for outrageous expectations. What we want to do is see if we can give helpful, useful feedback from the perspective of a family who has spent a lot of time and put a lot of heart into this program. The staff, the therapists, are behind us on this and are hopeful that hearing some of this feedback from us could maybe help them turn their program around. With a revolving door of therapists and a very understaffed department clearly we aren’t the only ones who see that the status quo isn’t working. And now is the perfect time, they are building the new hospital, let’s see if they can build a better program to go with it.
