The Struggle to Find Normal Family Life Amidst Special Needs
By Tabulous on July 31, 2012
He rages again.
It's the fifth time since I've been up, counting from the blood-curdling time-out screams that awoke me. I have no idea how many it was before that. Kyle's on kid duty in the mornings since it's summer, a blessed reprieve from the glass-walking that is morning time with those two.
This time, it's because WALL-E is on, because Tova picked it while he was throwing a fit in his room. That's part of what he does now -- something disrupts his despotic rule over our family and he runs to the stairs, hitting and slapping them as he goes up to his room to lay on his bed with the blankets over him. Sometimes it's because we force him to share a toy or tell him not to hit us/Tova/a cat. Other times it's completely baffling, like when he asks to color with markers and we acquiesce, retrieving the marker tote from the top of the fridge, only to have him scream in a primal way as we return with them. We try crayons, chalk, pencils, pens, everything we have in the house to color with and none of it is right, even though he clearly said, "Markers, yes!" when we asked him what he wanted to color with.
Now, it's the movie on TV. Because he didn't pick it.
Tova sits unfazed on the couch as he runs from the room, screaming as if we're beating him and I know the neighbors can hear because we certainly can hear them as their children scream their protestations of being "whipped," and I shudder to think what it must sound like from the outside. It saddens me how used to his behavior she is -- she's not quite deft at deflecting the violence he imparts towards her, as she's still in that drunken-toddler-walking phase, but she will imitate him when he screams like she thinks it's a game, or sometimes the appropriate way to behave. More and more I find myself correcting both of them, giving him a new parameter (we do not touch people with our feet; we do not hit with blocks; we do not scream to get what we want), and already telling her that she knows better because she's normal -- and I hate myself in those moments because I feel like a complete failure as a mother.
I also never want her to see her brother as lesser. But I'm keenly aware I can't control that anywhere even remotely close to at all.
I give him a few moments, to stop screaming, and go upstairs with half a Pop Tart that was my breakfast, but he loves them and if it will turn his mood and end this horrible morning, I can go without.
Briefly, it works. He comes downstairs, quotes the movie appropriately, and all appears well.
Until the next trigger sets him off, and the screams trigger every postpartum misfire in my brain and I, too, want to go running and screaming to my room to hide under the blankets.
But someone has to be the grown up here, and that is my endless and thankless position in life.
On days like this, I miss the thunder vest. Because these days remind me of the ones that came before his interventions began, where every single day was a battle and I cried myself to sleep every time my head hit the pillow, which was often twice or three times a day -- I napped when he napped, then again when Kyle got home, and then bed.
I couldn't handle more than that.
But when he left the state-run toddler therapy group (also, wow, how things so quickly changed for the so-much-extremely-better after that terrible first day), we had to give the thunder vest back because we were just long-term borrowing it.
And on days like this, a bear hug or a tight shirt just don't cut it.
He needs intervention. And we can't provide it, not as much as he needs, not with Tova and the pets and the daily goings-on of our lives, not enough to function and make sure everyone else is being taken care of, too.Not on days like this.
The people at the Autism Clinic were very kind and understanding, and Kiedis was a champ while they tested him, even eating something new to him (a granola bar) and generally being the sweet, charming little boy I know he can be, that he inherently is somewhere deep inside.
The report came in the mail a couple of weeks later, detailing our hour plus spent there, as he stacked blocks and played with a Lightning McQueen car and identified shapes and colors animals to his best ability.
They made note that I was caring and responsive to his requests, and kind in my disposition with him, which made me cry hard because the sting of losing your child because someone said you were a bad parent never really leaves you, nor does the tremendous doubt and second-guessing that comes with such accusations mixed with the unexpected roller coaster of having a special needs child.
They also said they don't think he's Autistic.
They think most of his issues stem from his lack of language and they said they could refer us to a speech pathologist outside of his school program if we wanted. (My sister has suggested that he may have a form of apraxia, which I guess will have to be the next avenue we explore.) Part of me is relieved, because ever since I found out I was pregnant with him, I feared Autism like some people fear their own deaths -- because I knew in the deepest darkest parts of my soul that I was not built to be that strong, and that I would fail him. But in other ways, it's back to the drawing board, there's no easy answer or set track of therapies and interventions to get him up to speed, to try and provide him a life as close to normal as will ever be possible for him. We're back to square one.
Except for one thing.
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