January 9, 2011

After Care

Posted in My Take on Autism tagged , , , at 10:29 am by autismmommytherapist

It’s late afternoon on a Tuesday, and I’m in hiding at the entrance to an elementary school, peeking through the mesh window of the front door, quite anxious not to be seen from the outside. Trust me, it’s not as sinister as it sounds, this lurking behind locked doors. I’m not at risk for expulsion, as any number of people at this school remember me from the last few years, since this was the site of Justin’s tenure in his own district’s public school system. In an effort to provide my eldest child with some interaction with neurotypical peers, interaction he won’t receive at his private school placement,  I’ve enrolled him in his former base school’s after-care program, and I need to be here on his first day to make certain everything runs smoothly. I’m hopeful that with the combined enthusiasm of the two lovely young people who run the program as well as the wisdom of his seasoned babysitter, Justin might actually get something out of this experience.

Call me crazy, but I’m hoping my son might actually have a good time.

I’ve arrived here ridiculously early as usual, and not only have I had the opportunity to reacquaint myself with the lovely secretaries who were so kind to me as I badgered them with questions over the years, I’ve also had the time to use the little girl’s room, an added bonus. Justin’s bus drivers and our school district have kindly agreed to transport him here twice a week after school, which means I’ll only have to schlep Zach here once daily to do a pick-up, a kindness for which I am truly grateful. I shift position slightly and my knee grazes something sharp at the intersection of floor and door, and I remind myself to stop my mind from wandering and concentrate on registering his bus’s arrival. Within a few minutes, enough time for my foot to fall asleep but not enough time for the subsequent hobbling to fully incapacitate me, his truncated yellow chariot arrives.

Ladies and gentlemen, it’s showtime.

I’m actually feeling fairly positive about the outcome of this afternoon, as I’m hoping Justin will be happy to reacclimate himself to his old haunt, and I’ve prepared him as much as its possible to prep a non-verbal child for anything. I’ve brought him to the program to check it out and meet the people running it, and I’ve talked to him incessantly about his new Tuesday/Friday jaunt. We’ve made our own version of “social stories”, where I’ve taken photos of him at this location and incorporated sentences explaining what he’ll be doing while at the program. His former speech therapist, who was exceptional, has offered to visit him periodically, so he will have continued contact with his past. He likes kids, loved his buddy program that afforded him a half hour with older, neurotypical peers on a daily basis, and perhaps he’ll make a connection with a few of the fourth or fifth graders here as he’s done in the past. In any case, that’s what I’m hoping will occur.

I’ve ducked down for a few seconds as these thoughts race through my mind, and I quickly pop up just long enough to wave at his wonderful bus driver so she knows it’s truly okay to hand my child off to the sitter who is a stranger to her, then crouch down again so as not to be seen by my son. I’d find the entire clandestine nature of this day amusing if so much wasn’t at stake, but I admit my heart is beating out of my chest as I then scurry around the corner and stake myself firmly in the utility room. In theory it should be mere seconds until my son and his sitter round the corner to the boys’ bathroom, at which time I will make my hurried exit, but just before I reach my destination I catch a glimpse of what’s transpiring outside, and my lurching heart makes a decided break for it out of my chest.

Katherine is having trouble simply getting Justin off the bus.

I know this no longer bodes well for the outcome of this day, as it’s difficult for Justin to learn to enjoy a new activity if we can’t even get him off the form of transportation that brought him to it. I slide further into the slightly musty utility room as two women discover me and ask if they can help me with anything, and I quickly explain who I am as well as my purpose for hiding myself. I’m momentarily glad I schlepped in my purse, so I can actually prove my identity if need be. They seem satisfied with my answers, although one is eyeing me strangely, and I silently beg the universe to get her to move along so if my son ever does get off the bus he won’t spot his mommy playing spy. She somewhat reluctantly retreats (and honestly, if the situation had been reversed back in my teaching days, I’m not so sure I would have been as nice), and I’m once again able to relocate behind the massive, unwieldy door that’s seen better days.

Within moments I hear Justin’s “eeee” resonate throughout the hallway, and since it’s his main form of vocal communication I stop to measure the timbre and tone of it, and realize that he’s calmed down enough for me to allow him to attempt this venture. I wait until I hear the click of the boys’ bathroom door echo behind me, then I run out the main entrance to my waiting car. Zach’s waiting for me at home, will have awakened from his nap by now, and if I’m lucky I’ll have a whole, blissful, uninterrupted hour with him before I have to return.

Upon my arrival home, for the next twenty-four minutes I reside in “normalland”, coaxing my escape artist son to use the potty appropriately, fetching him his requisite snack of juice and pretzels, and helping him care for “Baby Jessie” from Toy Story as I slip into the role of Jessie’s father. It is a blissful interlude from worry, ending up with the two of us ensconced on our couch under the “picnic blanket”, Zach providing comfort to a doll with an upset stomach, me coaching him on how best to help her. It is so peaceful, this time together, especially after such a long stretch with both children at home, and I’m truly enjoying it (and the sitting down is an added bonus).

Then, the phone rings.

My wonderful, competent sitter has called me to come pick up my boy, the one I can hear crying plaintively in the background, the one I moved mountains for just so he could have this experience. I call up to Jeff to ask him to watch Zach for me as I go to retrieve his brother, throw on the first shoes I see, and run as fast as I can through our semi-icy driveway to my still-tepid SUV. It’s only twelve minutes to his former school, but today I seem to hit every light and slow-moving vehicle, and the journey seems endless. Eventually I make it there, park in some administrator’s spot I’m hoping has long since headed for home, and look at the expanse of windows leading to the main lobby. As I approach I can just see the top of his ridiculously adorable Russian-type hat peeking over the ledge, and as I reach to grip the handle to enter the building I see his eyes, his red-rimmed eyes, light up at the sight of me. I walk in, he throws his arms around me, buries his head in my torso, then looks up with one of his glorious, disarming smiles.

The look on his face is one of utter relief.

I wave over to the program coordinators, who are clearly remorseful that he wasn’t happy there, and I reassure him it’s not their fault, that this, along with an increasing list of things, just isn’t going to be his gig. He practically drags me to the car, joyful that we’re leaving, certainly anticipating our return home. The tears have dried on his face now, and I can chart the salty stains on his cheeks as I secure him into his harness. I then buckle myself into the front seat, and after aging another year waiting to make the left turn out of the circle we finally gain access to the main thoroughfare, one of many roads leading toward home.

Normally, I would try to find the silver (or at least the bronze) lining in this afternoon. Perhaps I’d remind myself we’ll save a nice chunk of money every month from not having him participate in this, and I acknowledge I won’t have to worry I’ll forget I have to pick him up twice a week. I won’t have to interrupt Zach’s playtime again for the sake of his brother, an occurrence which happens too frequently for my liking as it is. There are, despite my sense of defeat, some positives to his not being enrolled here.

But just for once, just this once, I’m allowing myself not to focus on these truths. I realize that I’m crying, then laugh-crying because the last time I permitted tears to flow was when my husband shared the end of Toy Story Three with me as I was washing dishes, sobbing into Zachary’s sippy-cups. I just don’t indulge myself much with emotional release these days, find it too exhausting to recover and regroup, simply easier to try to laugh things off and move on.

Not this time however. This time, I’m just letting it all out. The annoyance factor at the amount of time, and phone calls, and research that went into making this decision. The irritation of once again having my time interrupted with my youngest due to autism’s vagaries. The thought of the myriad of details waiting benignly for me tomorrow so I can begin to undue this undertaking. The irony that he has a mother who would be happy, grateful even, to take him anywhere he wants, regardless of his disability. The envy factor, in which I try not to indulge often, of other parents who can simply make this choice, sign a form, and mail a check.

The fact that everything that seems to come with this life is so, damn, hard.

All of these things come into play, and I recognize and accept them. But what’s really grabbed my still-pounding heart, what is truly the source behind these unprecedented tears is this:  I just wanted my child to find something new to amuse himself, perhaps the chance to be fawned over by a few admiring girls several hours a week, because this is the childhood he gets. This is it, and the time he has left where he’s regarded as cute and cuddly is running out . For whatever reasons, ones I am certain I won’t fathom in my lifetime, this is just one more failed attempt for my boy to have some fun.

And as I wipe those tears from my cheeks, those foreign and undesirable droplets, for the millionth time, I just want to know why.

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8 Comments »

  1. Mom said,

    Shedding tears with you honey. Love, Mom

  2. misifusa said,

    Oh Kimi…I’m sobbing and I wish I knew why as well. xo

    • Seriously, I would pay BIG money if someone could just tell me I’ll know what caused this before I croak. I mean, BIG money… Thanks for reading hon, can’t wait to see you soon!

  3. MommaDJane said,

    I had one of those days yesterday. I’m the same as you, don’t normally allow myself to get upset and cry. I ended up actually somewhat angry at myself last night for feeling like I threw a self-loathing pity party all day. The answers why for special needs issues and the anger that goes with them…. Sigh. I wish I knew as well. I think I’m better at being mad about it all then allowing myself to just show hurt and {should I even admit} fear.

    Gabby will go to school, seem to enjoy it, do well, teachers say she loves it, then come home to explain to me she hates it and fight me tooth and nail every single morning when it’s time for her to go again.

    Sending strength prayers your way.

    • Same back to you. And it’s okay to have these days once in a while, I view it as a chance to regroup!

  4. Shivon said,

    *tears* I am sending you a gigantic hug…and Justin as well. This was heartbreaking to read. I get THIS. But let me tell you what stood out…..”and since it’s his main form of vocal communication I stop to measure the timbre and tone of it, ”
    You are an amazing mother Kim, you really are 🙂

    • Shivon, same to you hon (and I’m not just saying it, I read it with your own words). Thanks for this!

      Kim


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