It’s been an interesting week of therapy, so I’ve waited to write until my mind could munch on everything a bit.
On Monday, we met with Lisa. The unfortunate part of being involved with a state-run program is I’ve had to fill out over 200 pages of questionnaires and Lisa came with another 30 pager we had to work through. While we laughed and talked our way through the questions, Lisa seemed to be saying, “Hmmm” an awful lot.
It seems that Jake has developed a hopefully mild case of echolalia, which means that he involuntarily repeats things a lot. When I ask him, “Where are your shoes?”, he says, “Shoes?” and then goes to find his shoes. The finding part is very good since that means that he understands me and is able to figure out what I want and do it. If I ask him a yes or no question, the answer is always “no” or he just repeats the last word of the sentence.
So, I’m going to have to teach him the meaning of “yes” and “no” and how to answer appropriately. To do that, Lisa said that I need to keep our work to the concrete and not the abstract. Meaning that objects are fine, but asking if Jake wants something and trying to get a yes or no out of him is going to be much harder. The work began yesterday with lots of, “Is this a car?” and “Say ‘yes’, Jake”. Or, as I point to his giraffe, “Is this your blanket?”, followed by “No, this is NOT your blanket”. The good news is that Jake really likes this weird game that I’m asking him to play and it seems to involve a lot of laughing and hugging. I’m hoping that I can continue to make the therapy fun and that he’ll catch on quickly.
As Lisa left, I could tell that something was really bothering her. My heart sank that night when my phone rang and her name came up on the screen. Last week, I showed her what it takes to get Jake to chew his way through a meal. She had never seen me have to stick my finger in his mouth, move the food from his tongue over to his teeth, and help him chew his food. Between that, the extreme sensory aversion he still displays, and the echolalia, Lisa doesn’t feel like she is the right person to work with him anymore. She has the perfect person in mind and I’m supposed to be hearing from her this week. I understand and agree with Lisa’s desire to have the absolute best person working with him, but I’m so sad to lose her. Especially since Jake adores her and even on non-therapy days, he’ll run to the couch and look out the window and ask for “Seesa”. I will shed more than a few tears on our last day together!
On Tuesday, we met with Kay, the lady who has been doing our occupational therapy assessment to determine if Jake qualifies for OT. The answer to that question is “Duh”, but I’ve tried to be respectful of the process. Fortunately, Kay is squarely on my side when it comes to Jake needing more than just speech and feeding therapy. In fact, this week Kay as well as Lisa said “Hmmm” an awful lot. Which is becoming my least favorite sound to emanate from our therapists.
Some of the conclusions that Kay is reaching is that we need to be much more disciplined about Jake wearing his Benik vest, which we can do since it’s no longer too hot for him to wear a neoprene suit for four hours a day. I’m also going to be doing some deep pressure massage therapy with Jake when he is calm and still to positively reinforce the calm. Jake is still pretty spastic and energetic and while that’s really fun and leads to lots of running and shouting outside, it also means that he can’t be still when the situation calls for it. Since school is getting ever closer, we need to have school-readiness as the goal.
Kay’s main concern right now is two-fold. First, that Jake’s constant sensory overload, which causes the extreme high energy, is making it so that Jake is going to have a very difficult time sitting still for school. Second, Jake’s muscles, especially in his stomach and back are still very weak. Which means that Jake is going to have a very hard time cooperating with the demand of sitting up straight like a good little boy in school for seven hours at a time. The tendons on the inside of his legs are very tight and he can’t sit cross-legged. A great deal of preschool and Kindergarten is done cross-legged. I’ve already started to deal with the fact that home-schooling may be best for Jake for the first few years. If that isn’t necessary, then my prayers have already started to rise for an understanding teacher for my sweet Jake.
Kay is going to be recommending further OT work, as well as physical therapy. For some reason, the group we are working with denied us both OT and PT, but it’s very obvious that Jake needs both badly. So, I’m hoping in the 8 months that we have left with this group that we can get the help we need.
Another goal for the next 8 months is to find a special needs preschool for Jake. I’m not a huge fan of preschool, but I think that in Jake’s case it may be necessary to get him ready for school and for the rest of his life. There are a few state-funded schools that may be a good option, but we may need to go the private route, which means a high tuition rate. I’m trying very much to not worry about the money aspect of that right now and let God work that one out as He wills.
This week has been a hard one for me. I can’t shake the vision of the two possible futures for Jake. One has him not succeeding at school, being tired all the time because his muscles can’t work properly, and always being the weird kid. The other sees him triumph over his disorder and all of this merely being stories we tell him as we kid him about not liking to eat. There is a song I love about God holding “ALL our futures” in His hand. I think that is so appropriate to how I’m feeling. There are many possibilities out there and God will decide which is the one He has for Jake. I would still appreciate your prayers for me, especially for encouragement and patience with Jake as we navigate some rough waters.
Even though I tend to get down about stuff, every morning, this little face greets me…
…and that makes me really happy.