Today I am pleased to bring you Gina from Special Happens! She is a gifted writer, and she’s going to share her story with you today.
Fitting pieces of a puzzle has always been relaxing to me. A way to be still while unleashing the muddles of my mind, of issues unspoken. Color-schemes, patterns, what makes sense for one area of a puzzle, what is possible, what is outlandish. I still recall days where puzzle pieces were scoured seemingly haphazardly across a countertop, yet in their rightful place, awaiting their home nestled in their designated part of the picture that was to be.
Those puzzles made of wood, cardboard, a recycled material or two are long gone. My countertops hold no memory of puzzles of the past. Today I have a new puzzle. I have my son. But his puzzle is quite different. His puzzle is quite convoluted, complex. It has taken years for us to get a picture that looked complete-able as a puzzle. It would seem we have all the pieces, but lack the ability to snap them together in such a way that makes…sense.
Bear with me.
J has a number of diagnoses. Cerebral Palsy came first. An intrauterine stroke. One that was unforeseeable, yet one I continue to blame myself, my body for nonetheless. (Sometimes the oceans of love we have as mothers negates our intelligence.) Much was blamed on the CP, leaving doctors’ ears muffled as we cried out his symptoms.
Years went by. Language disappeared. Meltdowns (as we now know the term) became prevalent. Misdiagnoses ran rampant. Medications that would plummet a horse to his knees would soar through J’s body with ease. We finally said, “Enough.” We finally took control and trusted ourselves to find out who J was…is…and took away all his medications, except his AED (Anti Epileptic Drug).
Now, beyond Cerebral Palsy, J is diagnosed with PDD-NOS / Autism, and Epilepsy in 2 forms. One seems to be in check while we struggle with the second…Landua-Kleffner Syndrome. A rare form of epilepsy that causes verbal aphasia. Sensory Processing Disorder and Developmental Delays. Take a breath…
He’s been found to have twice the maximum acceptable level of mercury, arsenic and lead in his system. He has full allergies to gluten, wheat, malt, barley, casein, soy, egg and peanuts. He is missing two essential bacteria in his stomach, making proper nutrient absorption all but impossible.
He is also very susceptible to strep. Never having it prior to this year, he’s had it 4 times in 5 months with manifestations being different each time. He can not take oral antibiotics…it makes him vomit, likely as his stomach is already compromised. Instead, he withstands an injection of a bicillan cocktail. If I miss it, it neurologically damages him to the point of losing all words. All interactions. It takes months to recover; we’re still working our way up from one bout 2 months ago.
Why do I tell you all of this?
I am constantly evaluating J. Marking his movements on my makeshift mental scorecard. Measuring his actions, noting his words, roars. When he seems ‘off’… the more off than the usual ‘off’, I have to run through each diagnosis. Each possibility.
Mainly, does he have strep? The last known commonality between previous instances is entirely pink eyes. Glossy. Is the shade he currently has that shade? Or is it from the lack of sleep the epilepsy allots him? Is he missing sleep from the uncontrollable LKS epilepsy? Did he get something in his system that I missed as being GFCFSFEFPF? Is it ‘normal’? Did his senses not get ‘balanced’ enough to afford him sleep (as sometimes happens)? Is he outgrowing yet another AED?
I do this. Every day. Weighing every interaction. Behind what you may see, my mind calculates all that I witnessed of J during that day, the day prior and so on. It’s exhausting. It’s perplexing and frustrating. I feel as though I have the pieces of his puzzle…but these pieces remain too slippery to hold, too blurry to focus upon. These pieces of the puzzle that is my son…yet do not define him.
So, while I no longer relax. Ever. It would seem I have a puzzle that drives me to completion more than any before….and that is what it’s like to have a child with multiple, complex diagnosis….
How are you with the puzzle that is Autism? Do you feel you have all the pieces yet?
Gina St. Aubin is a wife and mother of 3, one diagnosed with Cerebral Palsy, PDD-NOS/Autism, Landau-Kleffner Syndrome (a rare epileptic disorder causing verbal aphasia), Sensory Processing Disorder and Developmental Delays. A former Victim’s Advocate turned advocate for those with intellectual and physical challenges, Gina believes being a ‘Special Parent’ means to Discover, Embrace, Educate, Advocate, Encourage, Treasure and Laugh. You can read more on her blog, Special Happens.
Wow, after reading Gina’s story I wonder how she is able to run such an amazing blog! Make sure you answer her question and then pop over to her blog.