“But I am embarrassed; she will make that noise and draw imaginary pictures in the air”
Hi, remember me? I am the person that got all A’s first semester, yet all C’s the last, because I just couldn’t find the glory in same old same old. Give me new and challenging or give me a C.
So, yeah, that’s my excuse for my bloglessness it was well…too much pressure to get it right…no, not the worry of dangling participles, nor the subjunctive verb agreement….get it right. You know…the Autism thing.
I thought it would be really, great, cathartic and engaging to share with the world our journey….Sophie’s journey….cause she’s the one with the “disability” the” Special needs” or my new favorite “learning difference” She’s the one with the IEP,DAN!,GFCF,ABA and PECS, ( see prior blogs for clarification here)
I never realized how high the mountain was…..how low the valley stretched….or how another wisp of a girl would be taken on this journey, the one with no acronyms attached to her name.
You see, in our house of autism, lives another child…..with sun kissed freckles red hair and dimples. As I said, she has no IEP, no ABA and she can munch on all the GFCF’s she wants. Yet hers is the cry I hear at night…hers is the shy face that now turns away from a new situation….she has taken the role of perfect sibling.
“Good evening ladies and Gentlemen, welcome to the Gee family theatre. Tonight starring the ever popular, BARRY, with his undying patience, gentle touch and master of all things kitchen. Also starring…the mom, LAURA, who will scan the web for cures while schlepping home the bacon and of course, the real star SOPHIE! Sophie, will dazzle you with her extreme artistic ability, remarkable reading skills and overall adorableness….(just please don’t ask her to define adorableness ) With of course a small cameo role taken by…HAILEY….the perfect sibling”
It gets old.
“Can we just wait ten or fifteen more minutes…? “ I give my best impersonation of a coping adult. “I am sure after I coax, bribe, connive and cajole Sophie; we will get to the movie/zoo/playground… out of the car”.
M O V I E ? Sophie screams at the top of her lungs. NO MOVIE!!! NO MOVIE!!!! Hailey turns and walks upstairs, these dates have been broken before. They’ve been cut short, postponed and sadly, obliterated all together.
So, I ask your permission, because there is a lot more here than Autism. I have heard it whispered, possibly spoken of in the back halls . What about the OTHER child, brother, sister…..how are they?
While we strive to cure our stricken child, the years fly by…one concert, one parent, one conference, a half a parent, one bus stop….no parent. Yet you don’t have Autism, you are the lucky daughter…so we forgot to pick you up, you seemed fine, your head in a book, computer….pillow.
There’s another one afflicted, she’s the one in the wings, the one with the cameo…the one who breaks my heart, right where the crack was already lurking. She has no speech therapists, OT’s or special diets. Yet truth be known, growing up the sibling of a (fill in your favorite PC phrase here), can leave the other child little more than a co –star, an afterthought…a given.
This is not a blog of pity or self-indulgence. My thoughts are here only to affirm how much needs to be done….for all of the Sophies…..yet for all of the Haileys too. It is not one childhood that s stolen, it’s two. Maybe in your house, if autism is an unwanted diva, you understand. Something must be done; the numbers are frightening and escalating.
I humbly ask; can this be a dress rehearsal? Can all the newly diagnosed children and their families be spared this unfathomable burden?
So, if my tone is not too deep, I will come here now and again, because the reality of Autism is the unknown, for everyone.