Today has been one of those sweet, validating homeschool days. The weather is heavenly. The kids are getting along, or at least were at the time of this post. Studies have been flowing smoothly. Including Trevor doing a terrific job reading a new book! I can't helping thinking "I taught him that!" as I noticed his improved fluency. He adores the Billy and Blaze series, which is helpful. Pretzels, however, are distracting.
We were having such a lovely day that I couldn't resist catching another video, this time of our fine motor rock stacking workbox. I try to think of tasks that are practical and meaningful. Rock stacking is a thing in our neck of the woods. My hope is that working on this at home will allow him to participate with friends in a meaningful activity when we're out and about. He loves this task and was doing great. Until about the 7 second timecode, at which point you can hear him intake his breath, see him pause from his task, his right arm elevates stiffly, and then he turns towards me for a hug. As he turns towards me, you can note the asymmetrical appearance of his face. What you don't see, because the camera is sandwiched between the two of us, is his body pulsing. You can't hear his labored breathing because my attempts at comforting him drown it out. If you pause the video at about the 20 second timecode you'll see his right eye is deviated inward, crossing, even as the seizure is relenting.
This was a mild version of the seizures we're seeing, in varying degrees of intensity, at least three times a day, often more. For months, I've been trying to catch one of film. Every seizure parent knows that video evidence is often paramount. Today was our "lucky" day. Sigh.
It's incredibly vulnerable to share this with the world...with the medical professionals even. I've had a neurologist suggest I take him to an ophthalmologist to rule out lazy eye when I said his right eye is deviating. When his Infantile Spasms relapsed, a chief of pediatric neurology told me it was just a tic but he'd go ahead and order an EEG to make my heart feel better. The EEG confirmed hypsarrhythmia, a marker of one of the most catastrophic forms of epilepsy, had returned. My heart did not feel better, she shattered. When learning that Trevor's epilepsy has relapsed again I've been asked, "But what kind of seizure?" The implication is that one seizure type is better than another. This implication is false. And hurtful.
There is no such thing as a good seizure.
Yet, it's true, I am thankful this one was mild. I am thankful he was able to carry on with his day and not left recovering on the couch. The mild ones are certainly easier on my heart.
2 comments:
You know I admire you a lot, right? Well I do.
One thing in particular that I really admire is the homeschool decision. I have thought about this a lot. A lot. It is like an alien planet to me, and I lack the confidence to think I could do it.
You? You kick those walls down. And I admire that. The fact that you and Jonathan have some solidarity and faith I think is a great thing. Families can get so shattered by all of this.
OK, I think I'm done. :)
It's funny how I'd been homeschooling Toby and Bri for years, yet bringing Trevor home terrified me. In retrospect I can't help but roll my eyes at myself. Of course he was going to thrive! First of all, it's an evidence based fact that children respond much better to direct instruction. You can't get more direct instruction than the 1:1 homeschooling provides! Also, I know him far more deeply than I could ever communicate to the school staff. Especially with the frequent turn-over and resistance to allowing me to educate them regarding his needs and diagnosis. I'll never forget how I tried to explain to his 1st Grade special educator that we should approach him like he has dyslexia due to having NO left hemisphere. She told me he was too young for a dyslexia diagnosis! I sat there, flabbergasted, thinking, "Well, he's not too young to have NO left hemisphere! Science tells us left hemisphere malfunction is directly related to dyslexia!" I'm using an Orton-Gillingham based program with him now, which is a dyslexia program, and just listen to how smoothly he's reading! He's picking up books that he's never seen before, or had pre-taught, and he's reading! Anyway...that's a rant. And that's just the academics. The change in his anxiety level has been palpable. We still have sensory overload and severe social anxiety (the first day of co-op was EXTREMELY difficult this year) but the anxiety level as a whole is so much lower. We even had to wean him off of his ADHD meds and you'd really never know.
Knowing that it's the right choice for him does not make it easy by any stretch of the imagination. It's EXHAUSTING. BUT...seeing him thrive in so many ways helps give me the strength to keep moving. I may not get dressed most days, but I'm teaching him and he's growing and that's meaningful. Put that on my tombstone. She didn't get dressed but she taught her children to read. :P
I don't want to project my own thoughts onto you, but from your comment I feel like I almost hear you thinking towards this idea with Bennett? Know that I would be available to support you the best way I know how. More and more special needs families are choosing to home educate. You could even just start putting your feelers in the water to see what is out there. I have a local friend who is homeschooling her two boys with profound autism and they are doing so much better at home.
This is definitely the kind of conversation that is better had over coffee. There are so many intangibles and things that come up organically, but these are just a few thoughts. <3
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