So many months have passed that it is difficult to know how, and at what point in time, I should begin this update.
Most importantly, Abbie is doing very, very well. The addition of a Cough Assist machine to our arsenal of support has been life (and body) changing for her. This machine provides positive and negative pressure to her lungs — in other words, it forces in a full breath, and then forces a strong exhale as well. Using this machine 2-3 times per day, 5 breaths per session has actually changed the structure of Abbie’s chest. Her ribs no longer flare at the bottom, and her chest is rounding out more.
The first couple months of 2012 were spent battling systems. I refrained from writing because I didn’t want to spew negativity or vitriol in a public, permanent place. The issues have been resolved favorably, and I am mentally in a place where I can write again with an open mind and heart.
Abbie will be starting sixth grade this summer. We had her IEP meeting at the end of March, and approached it with caution. Ray put it best went he questioned the elementary school staff, saying, “I am just trying to understand how 15 hours of tutoring — half of which was testing — can be considered a grade level’s worth of education.”
The response was that no children are retained in elementary school. Period. “So, ” countered Ray, “All that has really happened this year, for Abbie to be promoted to sixth grade, is that time has passed.”
We were considering fighting the promotion on the basis that Abbie had not been afforded reasonable access to education, but then the team from the middle school, who attended the IEP, began speaking. It took me about 30 seconds to realize that they were fully committed to actually educating Abbie, working collaboratively with me, and finding ways to make her educational experience as effective and enjoyable as possible.
So, middle school it is! Abbie is terribly proud of herself, and enjoying having a tutor come for several hours a week instead of just one. We will be sad to lose Miss Karen, who has learned how to work with Abbie (not a simple task), and has become an advocate for her. But, we are looking forward to working with Kaimuki Middle School for the next three years.
Their team came for a home visit a couple of weeks ago, and in just that informal time, brought ideas, resources and encouragement. Abbie’s nurse Alicia caught my eye while they were visiting, and just raised her eyebrows and mouthed “Wow!!” I nodded back with a grin…we are ALL excited.
I traveled to Montreal earlier this month, at the invitation of Leonid Blyum, the inventor of ABR. The ABR clinic directors from Denmark, Singapore and Argentina also traveled to Montreal, so I was able to meet each of them (incredible people all), observe them work with families, and then receive two days of lectures from Leonid, along with training on what to do with Abbie. So much was packed into those four days that it requires a separate posting to share information, beyond ABR techniques, that will be particularly profound for families of severely physically disabled children.
There were times during that visit when I just couldn’t quite believe I’d been invited, that I was sitting there soaking in new ideas and discussing them directly with Leonid, learning from such kind and competent people. I call it a “Vortex Moment” — as in, not quite knowing what vortex I walked through to land me in the company of such a small but wonderful group. I treasured every moment.
I apologize for the lapse in updates, but look forward to sharing meaningful information, exciting news, and new paths in the coming weeks and months.
Sunset on the Leeward Coast of O’ahu