Denial, not just a river in Egypt. Although to be fair I can’t say it was denial exactly. Wishful thinking perhaps? Falling victim to an imaginary world of my own mental creation?
Things were getting easy. He had an evaluation with his county speech therapist and special early ed teacher in March. He got out of the general special needs class! And we agreed he could be finished speech when the school year ended, since he gets no speech therapy when we begin homeschooling next year, and he really is pretty much done. Then I talked with his OT and she said she thought she may graduate him by the end of summer. I was ecstatic! I thought we may be approaching normal. Approaching a reasonable calm after years of therapy. I thought we could move past this. I started another blog, something that had nothing to do with therapies, and issues. (I gave up on it, thinking I should come back here, begin accepting our family issues again) I started thinking maybe I could start a business, something I haven’t been able to do since Blu outgrew sitting on my lap and nursing while I worked. I thought “here we go! good stuff coming our way!
Now, I know his situation could be much much much worse. But kids deserve to be kids, without balancing therapies every week. Even just one therapy a week is way more than a good kid deserves to have. Two to three is really just to much to be fair. and those kids who need more, well it just breaks my heart for them.
I got it in my head that when he graduates out of all his therapies he’s done, over, ‘normal.” But the simple fact is that it doesn’t work that way. He still has mild speech issues after leaving speech, reinforcement at home and time is all that can help him. He will still have sensory issues, forever, even if he creates his own system of coping techniques. He will never be “normal” even when he appears it to the outside world.
If you have a child with any special needs you know the evals, they happen. If you don’t know let me explain. Kids get evaluations to enter a program, to progress in a program, to leave a program, and periodically just checking things out or for birthdays. Blu only has moderate issues and his “therapies and evals” folder and is well over an inch thick. Some programs give you a single sheet progress report after every visit. Most evals are at least 8 pages long, usually back and front. Evals also can be long to go through, anywhere from 30 minutes to several hours of straight work and tests. Answer questions, draw a line, try this movement, cut this shape, say this word and this word and this word, what is this letter, etc etc .
Since she expected to graduate him his OT required an eval. She split the work up over several regularly scheduled visits, with a few visits lasting an extra 30 minutes. Then after we returned from vacation we got our 8 page report. Mostly he did fantastic! Quite a few things were in the normal range. Yay! But those that weren’t well some of them really really weren’t. Some skills he came in at a year or more behind.
Then, here at home, we started a phonics program to learn to read, and his issues became fairly obvious, and it was definitely obvious that he is not, in fact, approaching normal. I started all over. Rereading books I read in the beginning, learning names of conditions I had forgotten about, reminding myself exactly what we are dealing with here. So I brought my concerns up with the OT. I said openly that I am nervous, concerned, when he is finished there it doesn’t mean it’s over. It doesn’t mean he’s fine. Where do we go from there? So we discussed it, his eval results, my concerns of a certain diagnosis I expected he had, where do we go when he finished, should we get a doctor diagnosis or not. We agreed he wouldn’t finish yet. When she was treating the whole slew of stuff he had improved so much he seemed ready, but the eval really brought to light how behind he is on some things, and she doesn’t think they’ll be better by fall.
Now we have a new issue to add to the list. While it isn’t doctor diagnosed it’s for sure, and an official diagnosis just means we spend a lot of money and time getting a doctor to write it on paper, even though it doesn’t change a thing for us, or help us in any way.
Dyspraxia. His initial speech issue was no doubt apraxia, something every outside therapist said for sure, but county therapists didn’t even try to diagnose. Now his motor issues are no doubt dyspraxia. Apraxia and dyspraxia are essentially getting your body to do what your brain is thinking, and coordinating all your parts to work together. Apraxia is more generally speech, while dyspraxia is more generally your body, but not always. Apraxia, Dyspraxia, and Sensory Processing all involve neurological synapsis, getting your body to all follow the same commands.
So his therapist said dyspraxia, for sure. Eventually there may be dyslexia, in which case that $1k and hours of evals will take place. We’ll end up with a diagnosis list several lines long. But for now, we’re just doing what we need, and the doctor diagnosis does nothing for us since we homeschool. We’ll probably be adding a few new therapies too. Oh Denial, thanks for the kick in the face.