Sunday, January 15, 2012

Bring on the Good Stuff, 2012!



With Dora at ivig last week.

Readin' books - yes, it's upside down - she just wanted the buttons!


You have to idea how cool he is. Trying out his new racing gear.






We're back from Vegas, Grampa has returned to Ottawa, we're back to school and life's moving along. Lola's slowly adjusting to having one of her meds yanked, though she's had some rough days. We're seeing more of her "smaller" seizures - but that's to be expected while we transition. She's also put on a few pounds (now 23.1 kg) so we're cutting back her calories hoping to get her back at her fighting weight. As I type, she's in the bath tub, blowing bubbles in the water (another new thing for her - and pretty cool to listen to). She's been vocalizing more - in the tub especially, but also when she has something to put in her mouth - like her sippy cup or a toy. She said "butha" last night while playing with Liam - he was over the moon! I asked him if he still mentions Lola at prayer intentions at school and he said that he does. I asked what he prays for and he said "for her to get better." I said that maybe he should ask God for something more specific, and he responded with "I'm going to pray that Lola learns one new word." So he sees "butha" as his answered prayer, which is a good thing!


Lola's doing great at preschool, and has started to like painting! So cool! For the past couple of years, craft time at school has been a laborious task. She didn't like it at all, and fought most of the time. We always joke that Deannie did some lovely crafts (because we know that Lola would have been freaking out/protesting too much to finish the craft). lol. Lola has another friend at school named Akyrah and apparently they were inseparable this week. How awesome.


This has me thinking even more than I was before about schooling for Lola for next year. We have a few options....and I've been going nuts considering them. Public (at a school that's geared towards special needs/medically involved children) - is this "too much" for Lola or am I kidding myself? She does well at her preschool (typical kids). But then I think about the amazing facility that this school has, with an understanding, caring staff - snoozelen (sensory) room, swimming pool, on-site physio/OT/speech/vision. These are things she still needs.



But who doesn't dream that their kids will attend school together? Liam and I talked about it last week, and he begged me to let Lola go to his school. Inclusion, when done properly, can be an incredible thing for the special needs child, as well as his/her peers. Doing it properly takes time, money, and a deep understanding for what each child requires. I worry endlessly about funding cutbacks and what it means for Lola. She requires constant supervision, and a one-to-one ed. assistant. Someone needs to be an arm's length away (if not holding her hand) at all times - and I don't think I'm being a helicopter mom here. She could drop to the floor and hit her head, she could run off, she could pull the fire alarm! But still I dream that Liam can pop into her class to say hello, or to volunteer to read to Lola and her buds or to sing some silly narwhals song to crack them up. He's so incredibly proud of her. He realizes that she's different, but he doesn't care. He's never embarassed. Perhaps he's just not at that age yet - but he's pretty bright, and always aware.


We are also considering private school. Costly, yes - but we'll do whatever it takes to get her the education she deserves. I think we've got some big decisions on our plate. Of course Steve defers to me - duh, I teach for a living. I see what happens in the building where I teach, and it makes me fearful for the future of exceptional learners.


Anyway, off my soapbox. We'll figure it out. We have Kim advising us (Lola's "teacher"/IPP coordinator, and all around awesome person) and she knows her stuff. I know that Lola will end up where she needs to be. And hopefully not pulling fire alarms.



2 comments:

  1. Gillian, you are such an awesome mom, I know you will make the right decision in regards to Lola's schooling. And Liam, bless his heart, is the best "butha" in the world! I hope too that he can pop in on her and see how she is (Eric used to do that with Emma when she was in Kindergarten and he was in Grade 4...warmed my heart).

    And if she pulls a fire alarm...pfft, they can call it a fire drill! ;)

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  2. Again Gillian you amaze me - and it seems Liam has inherited your beautiful heart. It's hard about schooling as it is cool to have the kids in the same school and they can see each other. You will do whatever is best for Lola from an educational view. She sees Liam at home as well so he won't miss out on her accomplishments. (and from my experience with our kids in school...the novelty of having their sibling at school wears off eventually and the become just another kid in the playground). Maybe scheduled visits for Liam to Lola's school is an option? It will all be made clear in time. Isn't it great to marvel in things like a word being uttered like "butha," ? She certainly is the little engine that could an we, as adults, have no clue of the hills she sees and climbs everyday but she makes us all thankful for the climb. Keep up the great work Exley family. Our life is richer for this blog, our friendship and all the pics you post. Love you all. xxxxxx

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