Archive for April, 2010

The power of the people

     Of course there’s no one on earth that thinks about C as much as I do. It’s my job, and beyond that, it’s my obsession. I consider it my responsibility as his mother to do everything I can to help him navigate this world in which we live. Sometimes that means I have to intervene on his behalf, and sometimes it means I have to let him go ahead and fall down knowing that later I’ll be there to help pick up the pieces.

     I don’t expect anyone else on the planet to give C that kind of thought or attention, and it always sort of amazes me when someone else does. And when an entire group of people does, well, paint me one grateful Mama.

     C is having a bit of a crisis in terms of his CSP (see here). It’s gone to a whole new level that required some additional intervention at school as well as home. After going right back into school yesterday upon picking him up and seeing the condition of his head, I was near tears in frustration – not with C, not with the school, but rather simply with C’s fingers, which have taken on an independent life of their own in the torment of the wounds on his body.

     I started with his teacher, who immediately jumped on board with the proposed interventions and noted the potential issues that might arise with the other kids because of them. She already had a plan. Then we went to the principal’s office, who agreed in less than two seconds with what we needed to do next. I then fired off an email to all the specials teachers and C’s special ed team telling them what was happening, and was pleasantly surprised with an inbox full of emails voicing support and assistance in whatever he might need.

     Still, I was worried this morning. Starting with the first kid who harassed him when he walked onto the playground wearing a forbidden hat, C was on the edge of a complete breakdown. Anxiously, I left him at school, fighting the desire to pick him up in my arms and take him back home never to have to face another child again. The knot stayed in my stomach all morning until lunchtime, when I went back to check on the progress of his day.

     I walked by C’s classroom and peeked in the window. What I saw made my eyes fill with tears. There alongside the wall sat his occupational therapist, staring intently at him, having I’m sure just given him the fidgets she suggested trying one more time. There she sat for 30 minutes on a day she wasn’t scheduled to see him, probably delaying or skipping her own lunch to keep a special eye on C, just like I would have done.

     I left again, even without talking with C. I knew he was in good hands; there were all kinds of people watching over him, guiding him along in his day. I don’t know if C’s head will come home untouched today, but I know his heart has been touched, even if he doesn’t realize it.

April 20, 2010 at 1:48 pm 5 comments

Goodnight, day

     There are two things I know I am: a control freak and smart. I’m lots of other things too, but for this post’s purposes, those are the two most important. On a day like today, I feel challenged in both those areas. It’s the kind of day we all have as parents of autistic kids, but knowing they will happen does not make them any easier to handle.     

     There are days where all the planets align and I feel I know exactly what I’m doing and handle what comes with the grace and calm of a saint. But those days are stretched further apart than I’d like them to be, and the rest of the time I’m left feeling as though I’m flying by the seat of my pants or losing it altogether.

     Most of the time I’m in the “flying by the seat of my pants” stage, which isn’t particularly good, but it’s also not particularly bad. It’s the “losing it altogether” days that are the worst, of course. These are the ones where I have no idea how to help C deal with what life has put in front of him, and I feel like I’m throwing darts blindfolded. All of my training and education does not in one single way help me on days like these. I pull every trick out of my hat and still I fail.

     This is where the control issue comes in. I know I can’t control any of this, I know I can’t fix it, and I know there is little I can do to sort through the particular issues that cropped up today. Yet I trudge along, doing what I can, while feeling frustrated that it’s simply not enough. Not nearly enough. All this while knowing that no one could do it any better than I do.

     Somehow knowing that doesn’t help either. The only thing I can do is put this day to bed knowing that the sun will come up tomorrow, and tomorrow I will try and try again.

April 16, 2010 at 11:10 am 8 comments

Don’t bite the hand that feeds you

     When I was four or five, I used to bite people. I don’t really remember what my parents did about it, but I remember one person in particular I bit (sorry, Nancy) in the woods near her house. Later, in high school, my completely unqualified psychology teacher (he was really a math teacher, and may have taken a psych class as a first year college student, but I doubt it) told me I had an oral fixation because I chomped on my fingernails. At the time I found it interesting because it was probably the first time I ever encountered the “blame your mother” mentality; said psych teacher told me I had been weaned too early, so it was my Mom’s fault. Thanks a lot, Mom. 

     Enter C, many years later, and we come full circle. I thought we had escaped any oral fixation (with something more akin to an oral aversion), but I thought too soon. Just a few short weeks ago after lights out, Husband and I were startled by a scream from C’s bedroom. “I’M HURT! HELP! I’M HURT! I’M PROBABLY GOING TO DIE!!! AAAACCCCKKKK!!!!!” C had swallowed a glow-in-the-dark plastic marble and no amount of explaining how the digestive tract always puts out what it takes in calmed him down. Nearly an hour later and a phone call to Ga and Pa in which they relayed all the stories of things Brother and I swallowed as kids still hadn’t fully convinced him. “I’ll probably wake up dead in the morning,” he said mournfully as we turned the lights out once again.

     Two weeks later, after a lengthy discussion with C’s doctor as to whether the glow-in-the-dark marble would even show up on an x-ray given we hadn’t seen it come out the other end, C moved on to another level of oral exploration. He bit a playdate this weekend, and lest I thought it was an isolated incident, he tried to bite Husband this evening. C gets his great hair, dimples, and sunny personality from Husband; must only the bad things be passed on from me?

     It is with some distress that I find myself both celebrating and dreading what comes next. It’s not lost on me that this child with such enormous difficulties around food has all of a sudden started going through a stage we thought he had skipped. While C has gone through many developmental stages years late, this one is the latest by far, and it didn’t escape my notice that the nurse tried to hide her raised eyebrow as I showed her the twin to the marble C swallowed. Yes, he’s nine, we know most kids go through this at three, deal with it and get me the doctor, lady. “At least he’s putting things in his mouth now,” I said half-jokingly to his doctor when she stepped in the room. Now that I look back, I am noticing an alarming recent trend of putting all sorts of things in his mouth – rubber bands, balloons, erasers. What’s next, eating dog treats and sampling Windex?

     Oh dear, I think I need to go childproof my house now.

April 6, 2010 at 4:55 am 5 comments

Opening Doors

     Before we moved here I searched online for a parent support group, knowing that would be where I would find my friends. Sure enough, on the first day of school, I ended up standing next to the very person I had contacted online, and we marvelled at the small world connection. Robin is the best mother I know and one who inspires me on a daily basis. Lucky you, now you can get to know her as well in this amazing guest post. Enjoy.

Opening Doors

     I’m standing on my back patio, watching my five-year-old son through the sliding glass door. He is bouncing around the kitchen on his exercise ball, happily unaware that he has just locked his mother out of the house.

     Blake didn’t mean to lock me out. I had stepped outside to throw something away, just for a moment. After I left, Blake simply returned the door to its “normal” state – closed, with the latch pointed down. Like many other autistic people, Blake is very aware of his surroundings, and tends to “fix” things that are out of place. Lights on that should be off, books rearranged on shelves, doors left open that must be closed.

     “Unlock the door, Blake,” I say, shaking the door handle. He comes to the door, smiles. I instruct him: “Pull up,” and mime lifting the latch. Blake copies me but doesn’t touch the handle. “OPEN DOOR, Blake.” He laughs and repeats, “Open door!” But he doesn’t understand.

     It all comes down to this – all the hours of behavioral and speech therapy, doctors’ appointments, IEP meetings and filing cabinets full of data sheets and treatment goals.  If he cannot understand a simple instruction to unlock the door, what does it matter if he knows his colors, his shapes? If he can recite the alphabet forwards and backwards?

     I run to a neighbor’s house to call a locksmith, cursing myself for not hiding a key outside. Then, I return to my patio, to wait where I can play with him through the glass and try every so often to get him to let me in. The hazards of my once-childsafe kitchen are clear from my new vantage point. Which window can I break, if he grabs that sharp knife off the counter, climbs up on the still-hot stove, falls off that ball and cracks his head on the hard tile floor? Oblivious to the dangers, Blake laughs and bounces and taps on the glass between us.

     Just as I reassure myself that at least I can keep an eye on him, Blake leaves the room. He runs into my bedroom where, of course, the blinds are closed. I can hear him jumping on the bed, a favorite pastime that I instantly redefine as reckless. He yells “Jumponthebed!” – one of the rare times he calls for me to play. I am helpless to respond.

     Then, it happens. He reappears, running into the kitchen, and tries to open the door. He notices the latch and, without hesitation, flips it up and slides the door open. I am stunned by the speed at which my dilemma is solved. Blake, in turn, is bewildered by his mother’s enthusiastic and borderline hysterical response. I cry and hug and sigh and he just smiles, as if to say, “It’s about time, Mom, what were you doing outside for so long?”

     It’s not always about ability. More often it’s about motivation. Blake could easily learn how to unlock the door; he just needed a reason. People with ASD have difficulty seeing the world from another’s perspective – my need to get inside didn’t register with Blake. Until it became his need, the locked door didn’t concern him. Years later, my interactions with Blake are still shaped by this experience. Beyond teaching him the meaning of “unlock” (and hiding a spare key), the most important thing I can do is to give my son ample reason to use and strengthen his abilities; to discover what will entice and motivate him to open the doors to our world.

 

April 2, 2010 at 11:07 am 4 comments


It’s all autism, all the time.

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