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.
The report said that using the Bayley Test model, he scores at the developmental level of a 28 month old.
He's 42 months old.
Tova is 23 months old.
My children are six months apart, developmentally, despite being 18 months apart chronologically.
And the truth of that rocks my core, that every time I've thought that this is a level of hell worse than having twins, that twins would be easier, hell, triplets would have to be easier than this wild, difficult child and this other cuddly, sweet, normal baby tag-teaming me and now, now I know that it's because essentially they might as well be twins, developmentally. Except he's so big for being that young in his head, and he causes such hurt so often, especially to Tova who just wants to love her big brother, and she's somewhat understandably too young to explain the intricacies of the reality of our situation to -- but that doesn't mean it doesn't break my heart every time she goes to hug him and he screams and shoves her to the ground (or worse, charges her and slams her into the furniture, or puts her in a headlock and begins to choke her, or holds her head underwater in the bathtub or pool, thinking her chokes and screams are funny or play). And I break apart for both of them, for the relationship I so wanted them to have, that so many other sets of siblings have at this age, and the constant state of vigilance that courses through my veins, never releasing me from that fight or flight brain pattern, never ceasing the adrenaline that has to be destroying me from the inside by the hour at this point, ages me and robs me of any sense of security in the family I've created.
But it's also why my heart sings when they do have limited positive engagement together, when he looks at her and says "Hi, Baby!" and waves and she waves back, saying, "Hi how're you!" and they giggle together while playing in the living room, and I have hope that this too, may pass.
We get out the inflatable baby pool my brother bought Kiedis for his birthday for sensory therapy and instead of filling it with the plastic ball pit balls also purchased for the same purpose, we fill it with water and let the late July sun warm it while the children nap.
Upon awakening, I can hear Kiedis screaming at Kyle while he has his diaper changed. (The thought of potty training is utterly draining, as I'm pretty sure I'd have better success with Tova at this point for as much as I've tried with him, he just does not care one bit and it often incites more fits and screaming throwing of things.) Kyle returns downstairs sans-child, stating that he fought being removed from his bedroom. I go to the basement and retrieve his swimsuit, and go back up the two flights of stairs and stop just short of the landing at the top, just beyond his doorway. I can hear Kiedis running in circles in his mostly empty room -- he can't be left unattended with pretty much anything, because he will decimate it, including his own walls, floor, and furniture -- and I hold out just one arm, with his swim trunks in hand, into the doorway.
"YES!" I hear him squeal as he runs to where I stand, sitting down at the top of the stairs and pulling at the shorts in my hand, saying "foot, foot," because that's what both of them call shorts (whoops) and he even waits for me to put his rash guard on, a rarity these days.
He babbles something that ends with "wahdur?" and I tell him, yes, we're going to go get in the water, and he excitedly goes down the stairs himself, one by one, and runs to the back door, his sister joining from the living room and only a step or two behind.
We take them outside and into the pool, which isn't as warm as we'd hoped it'd be, but the kids don't seem to care, so we let them go at splashing and laughing together, trying to enjoy the fleeting moment of joyful bliss they appear to be sharing.
I end up going in shortly thereafter, to nap the day's stress away as much as I could so late in the afternoon, and Kyle tells me later that they sat in the pool together and talked back and forth, neither of them making any sense except to themselves.
The rest of the night progresses fairly well, until Kiedis hits me in the eye with a wooden block, and like that it's bath and bed rapid fire, with a whisper of a hope for a better day tomorrow.
Days like this always end that way -- with a whisper of a hope and a silent prayer to whoever will listen that tomorrow, tomorrow will be the beginning of the end of all this, that we'll have answers and he'll have words and she'll have someone to look up to instead of to fear and we'll finally have something resembling normalcy.
But I'll settle for better than today.
Photo Credit: meddygarnet.