The news of cancer not only initially brought fears of death, but it brought about great great fear as to who would continue my son's education and therapy. Our son is very bright, talented, skilled, warm, loving -- and he also lives with a duplicate chromosome 2 which has caused things like apraxia, dysarthria, hearing loss, GI challenges, and Autism Spectrum Disorder (ASD) in which he is high functioning. I entered the field 6 years ago with 4 other degrees which actually gave us a lot of insight into our son's needs. Therapists told us back then we might never talk or communicate and if so it would be like other clients they saw whose skills got stronger at maybe age ten or later. We were told reading would be the hardest area for us - suggesting we stay at two and three syllable word books until he could say them then move on. They said we would have trouble in other areas of academics and needs and so Special Day classes were our only option. Today, our son is reading 8th grade level as a second grader, he's bilingual in sign and English, he's learning Spanish and Japanese, loves math and science, he plays musical instrument, has reached 5 belts in karate, runs, sing, dances like no other -- he's done the exact opposite of what expectations were made of him. Sure we have challenges still, but our glass is never half empty.
Six years ago we also had to fight specialists in honoring sign language as a language deserving equal status as all languages. In our case, he has a moderate hearing loss and sensory challenges. A moderate hearing loss means he hears but it's like sticking your fingers in your ear then turning away from the person talking. In our case, due to strengths in his peripheral vision (also common in ASD), he picks up side vision movements in both sign and verbal language. But he also fatigues; gradually less over time but we still need supports and naps for instance. Without this, many areas of the brain start to deteriorate --- like the areas housing attention, hearing, brain coordinating and brain planning. Initially when much younger it was all this plus the fact that his mouth was weak (dysarthria) and it wouldn't do what his brain was thinking and wanted to do (apraxia). We had multiple areas of need which have gradually and steadily increased over the years with intervention. Signing is one way that allows access to information and therefore knowledge and access to an education in which one can continue with peers.
We spent years of advocating for our son and of showing them that there are alternative paths to the brain that not only included signing, but music, math, kinesthetic activities and so much more. The neuro field is showing this in its literature with proof of neuroplasticity -- the idea of getting to the same place a different way.
When it comes to signing, for instance, our field of speech language pathology on one end has come a long way in its acceptance of ASL or any mix of sign; and yet divisions occur in which the opposite is true where they say sign hinders language development (this I've never understood since ASL is a language), and is a crutch -- saying all of this with no scientific proof and yet the neuro field shows plenty of brainscans showing benefits. Ironically the negativism and exclusion comes from people who have never been bilingual. Fortunately, as a clinician, I've worked with awesome SLPs and professors. Multimodal and client choices are important. I'm also supportive of people's choices in bilingualism, of inclusion of all languages.
Alternative pathways to the brain means using the visual cortex (if not blind), the temporal, parietal, frontal lobes, the cerebellum, the midbrain through activities like music, math, kinesthetic movements, breathing and core activities -- using all possible ways. It is like if you are driving on the 101 and end up in a traffic jam on the way to downtown San Francisco, one has a couple of options: one could sit in traffic doing the same thing and never move at all OR one could actively take the streets or frontage roads. One could get there period by taking these alternate paths -- and in many cases, can get there even faster. In talking about brain injuries, for example, It's classic Aesop in the end -- I'd pick the constantly moving Tortoise on the frontage road over the non-progressing Hare stuck on the freeway any day (tortoise, by the way, doesn't imply slow -- have you ever seen one jump off a dock into water and seen it pass a fish? They are fast! And unlike the hare -- they have bi features of land and water). That's how the brain and neuroplasticity works and there's plenty of science behind this. It's the path we chose. It's the same path I chose years (hmm. I guess decades now ;)) when doctors told me my running career was over after injuries including a pulled achilles. And yet cross training proved otherwise, ultimately leading me to tasting a wonderful professional career as an elite athlete and later Olympian. And yet in January after learning about my cancer, the thought of continuing with the last items of this particular graduate program prior to this graduation -- the state license and the three year cumulative exam known as 'comps' -- was far from my mind. I was in survival mode fighting my way through mountains of information regarding upcoming tests, imaging, surgeries, chemotherapy, cancer causes, foods cancer likes, my plan to deprive cancer and much more. I had almost given up on my latest academic career in which all these degrees or areas of study are interdisciplinary, informing one another in a full circle of useful application.
I did a lot of soul searching, praying, bargaining, asking for positive energy around me... I wanted a window, not necessarily a big one but just any glimmer of a window that would allow me the opportunity to take my license and comps exams this semester. It was a long shot -- especially in coordinating the schedules of two surgeons and one oncologist AND beating the time they believed my cancer cells would continue aggressively and invasively doing It's thing. The four week window between mastectomy and chemo miraculously, it seemed, to appear. I took it as a sign -- I had to at least try. The worst that can happen is that I wouldn't pass this time around. But there really was no time thinking such thoughts since last moment studying and actual test taking was enough in itself.
Earlier when I blogged about passing that first exam -- the license -- I mentioned I cried like a baby. I was grateful, relieved, filled with purpose.
When we drove to graduation on
May 21st, 2013, I was excited--but, for me, putting that cap and gown on once we parked on campus was like actually getting on a plane to a much wanted trip; it's realness sent chills up my spine. I was literally flying! I loved meeting my flight companions, too, (my classmates of the past three years which I've had the privilege of getting to know and studying with over three full time years without a break; the ones who couldn't make it were there in spirit). The program was far from easy. In fact, for me, it was the hardest degree to get through for many reasons. It's a science field which demands a command of human anatomy, physiology, assessment, treatment while also working on fast paced teams of doctors, physical therapists, occupational therapists, nurses, administrators, families and caregivers (I typically read daily from 4am-8am and worked with clients on Fridays). For me and my family, we also buried our daughter, survived septic shock post delivery, experienced a tumor which appeared two years ago in my pelvis which required surgery, advocated for our son through various diagnosis assessments and treatments, and now fought an aggressive and invasive cancer that I only read about in others until this January. It is the most meaningful of degrees I've ever experienced.
Surviving for me has always meant a chance in life. I hope this chance, with this latest degree, gives me a chance to work with severe cases in which an alternative and yet evidence based scientific path can make a difference. I've seen it already in everyone I've worked with over these past three years, past 8 years with our son, and I am grateful that this path is open to me. None of this was on my own; I've had so much support in so many ways. I'm so grateful.
I'm grateful that my son has fueled this passion -- and I'm so so grateful I am getting to live, I am still getting to be the main driver of his education and therapy AND most importantly, I am getting to be his main advocate and mom.
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