Big Decisions…



 

As the school year wraps up, I’ve found myself fixated on what I can make better for Lola where school is concerned. Don’t get me wrong…I love her current teachers, and she has had a very positive experience at her school. I just want more for Lola. I really thought I wanted to have her in a typical school, with other typical children…but that’s not what I want now. I know that Lola was always celebrated in her program, by her teachers and aides. It’s the greater school community thing that bothers me. Being “too loud” in the hall. Being quickly ushered out of an assembly for being too boisterous. I was recently at Liam’s school to see him receive recognition for the sacraments he’s received this year, and I noticed the ESII students that Liam raves about. Many of those students (I’m assuming…) are on the spectrum, and were obviously struggling to deal with the noise and space in the gymnasium. It didn’t seem fun for them. Lola would be exactly the same.

So I arranged another tour at a school which caters solely to a special needs population. Many of the children are in wheelchairs, use walkers and standing frames, are tube fed, etc. The staff seemed caring and friendly (so awkward when you have strangers popping in while you’re working), and the school has so very many resources. I couldn’t get over the amount of equipment and bikes, sensory rooms, etc. etc. There’s a pool. A pool! For Lola the mermaid! Anyway, I think it’s the right decision. For now, anyway. There were several mobile kids, and all of the students are working towards communication, which is awesome. I just picture Lola running that place, and it makes me laugh. There are only 75 students at the school – which seems tiny to me. I’m feeling pretty good about this choice today – hopefully I can stop fixating.

Seizure-wise, we’ve had some ups and downs. We were attempting to wean Valproic Acid, and increase Banzel. Well, we upset the applecart, so to speak. All hell broke loose, and she was having huge tonic-clonics. So scary. Now we’re seeing a seizure upon waking, then sometimes another just before her evening meds. Like clockwork. We see her neurologist on Monday – not sure what the plan is. I’ve been doing lots of research on CBD Oil, as well as clinical trials of Epidiolex. I should find some links and post them here. Basically medical marijuana – in oil form. Epidiolex is the pharmaceutical formulation of CBD (from what I’m understanding). Some very promising stuff going on in terms of seizure control/relief. Hopefully we don’t have to move to Colorado to get the hook-up.

Lola is really into anything to do with a school bus right now. Obsessed. She really loves her bus ride to school and runs to and from the bus. So cute. She’s still loving Bobs and Lolo, her ipad, the trampoline, swimming lessons, and books. I can’t believe she’s finishing up grade two.

Liam has had a great year and loves his school. He spends a lot of time in the special needs class across the hall because he loves the kids, and would like to be an aide or a special needs teacher when he grows up. That just about makes my heart explode – what a guy.

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