So, um, yeah…about this Autism Awareness Month? I do have something to write about how my local Home Depot has completely embraced not only awareness in the month of April, but, well…I’ll tease you and tell you you’ll have to wait another day for that post. It’s worth the wait, I promise!
I was all set to post pictures and write pithy verbiage much sooner than this, but, well… Nik, apparently, had other ideas. More specifically, his brain had other ideas. It began misfiring a few weeks ago with some breakthrough seizure activity. We upped his medication and thought we had it under control. We were mistaken.
The past couple of weeks we’ve been not only monitoring Nik’s seizure activity, but increasing meds again and watching the seizures (or seizure-like activity) transform. We’ve had some unplanned phone calls and office visits with our fabulous neurologist and we have a plan in place. It’s a short-term plan, but it’s a plan; it includes another ambulatory 24 hour electroencephalogram (EEG) in the immediate future. We need to know if we’re dealing with increased seizure activity or a severe movement disorder. Think tics which occur at such a rapid and constant rate that they interfere with nearly all functioning and definitely with Nik’s safety and you’ll have an idea of what we’ve been dealing with.
Yesterday morning, we watched Nik lose consciousness for the first time in a long time. Then he napped for more than two hours. We’re pretty darn sure that wasn’t just a tic. So, we’re looking at options for short-term treatment until the EEG. Good times, my friends. Good times.
In the meantime, this week also threw us another curve ball in the form of Nik’s hearing; his hearing is getting worse and he now needs hearing aids. Those will be fitted in just a couple of weeks. That news was a bit of a kick in the gut at first, but I’m getting more used to the idea; I just hope Nik will cooperate with wearing them because we’re running out of options. The issue is not volume so much as loss at certain frequencies which fall right in the ranges necessary for speech comprehension.
This new knowledge about Nik’s hearing explains several things with which Nik has struggled during the school year— including attention, following directions, and reading skills. It’s difficult to know what is being asked of you if you can’t understand the words being said. This change opens up a whole host of questions about what additional supports Nik needs that he is not currently receiving and whether the current placement is best for him. We’re left wondering how to deal with the significant vision impairment and hearing loss and autism and cerebral palsy in a way which allows Nik to play to his strengths versus remediation of weaknesses and in an environment which doesn’t become isolating.
We have no answers yet… just a lot of really good questions. I’m sure I’ll write more about this as it unfolds.
Our biggest goals and strongest desires for Nik are that he learns to read and to communicate more independently. I feel that if we can give him those skills, the rest will either come or he will find ways to compensate. Without those skills, his shot at independence is incredibly limited.
So, on the heels of a very emotionally difficult week (which included a scare about a broken iPad and a 2 hour trip to the nearest Apple store) —and because I may be just a smidgen of a Pollyanna, I am holding on tightly to this little nugget I shared on my Facebook page tonight:
OMG OMG OMG!!! I completely forgot to share this news:
Nik READ the word PRETZEL on a sign yesterday. I was like, “Sweetie, where did you see that word?” He pointed right to it on the sign. Then he promptly asked for ice cream. (We were at Rita’s so it wasn’t an odd request.)
Yin and Yang. Yin and Yang. The journey continues.