There have been many weeks in our marathon out of the maze of Jake’s sensory problems where nothing at all has happened. Sometimes, the progress has been too small to see and other times it’s just been an off week. Thankfully, this week has not been one of those weeks.
First of all, a quick update on the next direction for therapy. I found out that the group that was going to help finance Jake’s therapy will ONLY pay for speech therapy, not physical therapy or occupational therapy/feeding therapy. So, I’ve decided to let go of our current therapy at Memorial and to continue with the school district. Even though that means letting go of our precious Becky, when I found out we would have to say goodbye to her anyway and switch to a speech therapist, it made the decision a little less painful.
I prayed very specifically for God to shut doors, windows, and plug the cracks in the walls (since I’m extra persistent) and show me clearly what direction we needed to head. I’m thankful for such a specific answer to prayer.
After our meeting last week with the school district, I’m a little nervous about where that answer to prayer could lead us, but I’m not going to count my dragons before they are hatched.
Our assessment last week was…interesting. Since I, like everyone besides Mary Poppins, could stand to focus more on the positive, I will first tell you everything wonderful about our meeting.
I really appreciated that all of the licensed professionals got down on the floor and played with Jake. Most health professionals sit in a chair and observe and ask me questions. Every single one of them played with him and interacted with him. It seemed like they all listened, and not one of them communicated that I didn’t know what I was talking about. It was a welcoming, friendly environment and Jake responded very well to it. They were sweet to Jake and it was obvious that they really enjoy what they do, as well as working together. Tension in a room can make everything go wrong for a young child and I so appreciate the environment that they have worked hard to create.
I do have hesitations. They did not have an occupational therapist there, nor did they present anything with odd textures to Jake. I wanted them to see his inability to deal with certain things, hoping it would trigger the recommendation that he needs to continue in feeding therapy. They didn’t give him anything more complicated than a rubber ball, though and I think that next week I will ask if I can bring him back so they can see how he responds to textures, specifically food. It may have been a situation of them being bound by the tests that they are required to give. The formalized tests they give are created by who in the world knows who (I suspect the same monkeys who are trying to type out the Bible), and the test may not have actually allowed them to ask/present the right things. I know for a fact that the test is off, since Jake scored low cognitively. But, the only reason he scored low cognitively is because he couldn’t give a verbal answer to their questions. Which is like saying someone who speaks French is dumb, because they can’t answer a question in English. Grrrrrr. We all know, including the therapists that day, that Jake is above average in the Smarts Department. It’s still annoying to see them write down “Below Average” on their little form.
Jake did exactly what we hoped and proved that his little language is not one that anyone understands and he qualified for speech therapy. They have another 17 days to place someone in our home to begin speech therapy. I’ve been told by other parents in the system that I will need to watch the whole process carefully and that I have every right to ask for qualifications and to request someone different if they aren’t getting the job done. I totally and completely support qualifications, but I’ve always thought that if one of the above typing monkeys could get Jake to where he needs to be, I would be very happy.
That, I promise, is the short version of all of that.
On to the good stuff, which means progress and lots of cute pictures.
The first big step we made this week was this:
Notice how those little legs are crossed? It took us three months to get Jake to sit like this. Which is important because it requires balance and stomach muscles to not fall over. Since those muscles have been so weak, Jake was scared to sit cross-legged, which led to him not getting any stronger. This was a huge moment and when I saw it, I scooped him up and cried.
Another big thing was that he learned to spit his food out. Which, yes, is gross and most parents have to tell their kids to NOT spit their food out. Since Jake crams his food in his mouth and then can’t chew it, it was imperative to teach him to spit as it could literally save his life. And, this week, he spit! And another big celebration!
The biggest thing that has happened in a long time is that we may have unlocked another door in the maze. And all thanks to the fork. Well, really, thanks to the Empress Theophanu for making the fork popular in Western culture way back when. Seriously!
For a while now, we’ve been having Jake sit with us at the dinner table, even if he won’t eat, so that we can model eating, chewing, drinking, etc. This week, Greg gave Jake a fork just to see what he would do. And this is what happened:
I could hardly believe my eyes! He even chewed! And swallowed! All by himself!
And when, we cheered and clapped and told him how wonderful he was, this was his response:
“I’m amazing and I know it!”
After we calmed down, Greg and I got talking about his own reluctance to eat with his hands for the very specific reason of not liking to get stuff on his fingers, which is one reason that he always eats pizza with a fork.
And you know? If Jake goes through life eating pizza and hamburgers with a fork, who really cares. I say, “Hurrah for the fork!”
I’m sure that God doesn’t get very many thankful prayers for forks, but I know that He has now heard that specific prayer from me. It probably won’t be the last time He hears strangely worded thankful prayers from me. 🙂