Posts tagged ‘sensory integration’
It’s about that time of year. I’ve been listening to Christmas carols for a couple of weeks now, which is far better than my usual late September starting date (with apologies to my college roommate, who teases me about it to this day), and C’s Christmas list is long and wide and full of things there’s no chance anyone will get him.
C has been asking for a couple of months now if he should check his name on santaclaus.net to see how good he’s been. But he hasn’t done it, and last night I found out why. While he soaked in the tub, we talked about our plans for the holidays. “I’ll bet Santa won’t bring me much this year because of my behavior,” he said, his head hung dejectedly.
My heart broke more than a little bit in that moment. I couldn’t lie and tell him his behavior has been fine. It’s been a challenging year for sure: C’s behavior has rocked our family to its core, and I’ve read more books on defiant children than any parent should even know exists. I’ve collapsed on the floor in sobs too many times to count. And Husband and I have locked ourselves in our bedroom far too frequently in order to escape the wrath of C. Still, there’s nothing more heart wrenching than a child whose self-defeat is written all over his face, and all I could do was give him a big kiss on the forehead and tell him that Santa knows he’s been trying his best.
Once again I was thrown into both the joys and sorrows of parenting this particular child. In the same moment, I was both impressed C recognizes his own challenges and sad that he feels his challenges are having such a profound effect on his life. It’s times like these when I remember that C carries the weight of the world on his shoulders, and there’s little I can do to help him shoulder the load.
I have had to force myself to limit the Pokemon conversation that is a constant in our lives these days. I let C tell me about two Pokemon, or talk for five minutes, or ask three questions. But when we’re done, he inevitably asks, “What should we talk about now, Mom?”
I admit to being at a complete and utter loss at how to answer this question, and it leaves me pondering just what it is I discuss with other people all day and how those conversational topics are set. Having to “pick” a topic of conversation reminds me of an awkward first date, because you know if it’s that hard to find something to talk about, the relationship will never work. Since this question mostly comes up in the car after all other topics are exhausted, I generally say something about just enjoying the ride and looking out the window. This seems like a cop-out to me, but I’m baffled as to what to say. I’m so used to conversation just flowing that being forced to think about how it does so renders me mostly mute.
I’ve tried the conversation starters, and they work for a moment or two. Once C even surprised Husband and me by suggesting we share one thing we liked about our day over dinner. God love this child – he is trying as hard as is humanly possible. It’s not that C is trying to hide anything or doesn’t want to talk, but when I ask him what he did in Spanish class today, the answer is brief and full of the basics. He doesn’t talk about the other kids unless something major has happened, and he often misses the daily dramas that occur within the classroom around him. I pull as much information out of him as I can, but once those conversations die out, C somehow works Pokemon (or Mario, or plumbing, or trains, or whatever is his current fascination) back into the discussion, and I tend to fantasize about escaping to Hawaii.
I’ve realized that despite being extremely verbal and talkative, C has very little “functional language.” A speech therapist told us this once, and I admit to not completely understanding her message. “C has much to talk about, but much of it has nothing to do with people, emotions, social interaction, or function.” Frankly, I think we were so happy he was talking at all after years of silence (verbal anyway…the days of screeching “Pterodactyl Boy” aren’t erased from my memory), we perhaps missed the fact that his language was missing some key components.
Yet now, when I talk with some of the neighborhood kids, I realize how effortless conversation actually is for typical kids, and I revel in those moments of crystal clear communication. I’m amazed not only at what they observe (“Dog isn’t as excited to see me this time as he was last time, Mrs. P,” says the three-year old neighbor boy, while I stand there, mouth gaping open at his awareness and ability to share that information with me). Then C will say something to another parent about knowing what Wi-Fi system they have and whether their parental controls are set on the Wii and both of us have to chuckle.
Fortunately, C is extremely charming. Dimpled and smiling, he loves to talk. He’s friendly, engaging, and often quite funny. He does have friends – actually, if he knows your name, he considers you a friend – although close friends are few and far between. At this age, where kids are starting to have relationships based on more than one shared interest, C is left standing conspicuously - and often painfully - alone. I hang on to the fact that his so lovable; adults love him, and my hope is that when his current peers become adults, they will love him too.
As parents of special kids, we celebrate the strangest things. I’ve always thought we appreciate the milestones more than parents of typical kids because our kids work so much harder to reach them. Or perhaps it’s because we don’t know if they’ll ever reach them, and when they do it’s time to break out the champagne.
Tonight I’m celebrating the success of something so huge I’m surprised I’m taking it so calmly. Really, it’s passed by with hardly a discussion among the adults in the household, but still, it’s amazing, so I must take note.
C is finally using toothpaste.
And once again, like another big moment in our house (see here), we owe it all to Spongebob Squarepants, that goofy little creature who has been responsible for two of the biggest milestones reached at Casa C. While walking through the toothpaste aisle a few weeks ago, C happened to notice the Spongebob toothpaste, and he begged with desperation to buy it. I barely let him get to “Pleeeeaaaaasssseeee,” before I tossed it in the cart. I explained to him that because it had fluoride in it, he would have to work his way up to it with the baby toothpaste that’s safe to swallow. I’ve long had a tube of this baby-safe toothpaste sitting on his bathroom counter; we’ve smelled it, even tasted the most miniscule bit of it, but we’ve never progressed any further. I learned years ago that trying to get C to do something scary – especially something that revolves around his severe oral defensiveness – is next to impossible. I’m not totally crazy; I pick my battles. And since his dentist has been completely fine with him not using toothpaste, I’ve let it slide, knowing that at some point, his motivation would kick in for one reason or another.
Nevermind that I’m unlikely to allow that Spongebob toothpaste ever to pass C’s lips – I’m hoping he’ll outgrow his interest far before he’s ready to use the real stuff. It’s got more unpronounceables in it than a twinkie, and I’m sure it is a ghastly shade of yellow that doesn’t even exist in the natural world. Still, there that toothpaste sits, on the counter, while C hesitantly, but willingly, practices brushing his teeth with the baby toothpaste.
Thanks again, Spongebob. You rock.
This move has not been an easy one. Numerous reasons come to mind; all of them too mundane and detailed to bother with here. But suffice it to say we are all more than just a little homesick for lands west of the Mississippi. We’ve lived in seven cities in almost fourteen years, and while I usually enjoy starting over, I’m over it now. Still, there are great positives, and we know that. I expect in a few short months, we’ll settle in and start to love it. And if not, we’ll suffer through it for a few years until we feel like we can head back to the frontier.
Husband and I aren’t spring chickens anymore, and my own health, while far more stable than it was a year ago (see here), is still presenting challenges. Basically, I’m tired. Not just physically, but emotionally. I keep wondering when life with C will get easier – and there are a great many things with him that are, in fact, easy – but the continuing challenges have taken their toll. I fully recognize that by the time I am done redirecting, correcting, motivating, corralling (is that even a word?), herding, guiding, planning, figuring, and, let us face it downright nagging, there is little left of me to be fun Mom. I tell myself perhaps I expect too much of C, but when I’m spent just getting him out of bed and out the door in the morning, there’s a problem.
On one hand, this delightful child of mine is driving me downright Bat.Poop.Crazy. at the moment, and on the other hand, my tolerance level is low. Very low. Extremely low. You all know me; I don’t complain about my kid. I know raising a child, any child, is difficult. And I know raising a child like mine is beyond difficult, but I’m not a parent who feels short-changed with the child I was given. I feel lucky to have him, blessed to be entrusted with him, and generally feel slightly sorry for parents with typical children because I imagine it must be somewhat boring. Yet at the moment, I’m just spent, and I’m not really sure how to re-engage.
I’m annoyed before I even get C up, because for the first time in his life I actually have to wake him in order to get to school on time, and he is not fun to rouse. I devised a routine where I take Dog into C’s room, plop him on top of C and let Dog lick C awake. Dog is old, really old, and I wonder how long he will be with us. What then? I wonder. And then I get annoyed because C can’t just get up like any other kid. No, I have to get him up happy, or the day is shot. And then this annoys me – all the hoops I have to jump through just to make things happen for C.
Yes, I am a control freak. This I know. But having the child I have has furthered that trait to an obsession of which I am not proud. Yes, I do things to accommodate my child not only for his happiness, but for my own as well. If he’s happy, I’m happy. When he’s not happy, everyone pays, and pays dearly. And that payment is just not worth it to me anymore; I have no well left from which to draw.
It’s a slippery slope here. This I know. But I just can’t seem to get any traction.
I apologize in advance for the length of this post, but please read through to the end. Just trust me.
November 1 is supposed to be a “communication shutdown” day in order to raise autism awareness. People are purposely not using facebook and email in order to mimic what it must be like to be autistic. Quite frankly, I find the whole exercise strange – for me, at least. My autistic child is at his communicative best on the telephone when there are no faces to distract him. I suspect someday he will be the same online, so I refuse to be electronically silent in order to raise awareness of autism. This is a time to speak up, not shut down!
The last time I was silent was a moment I will regret for the rest of my life. After being bullied, teased, and picked on for half of his second grade year, C’s teacher asked if I would be willing to allow someone to come in and speak to the class about him. She hoped to help the other kids understand why C talks too loud, why he laughs at odd times, and why he just seems different – she hoped that the kids might gain some empathy.
When I look back on the entire “event,” I am amazed at my own naiveté and silence. About the only thing done right was arranging for C to be out of the classroom during the discussion. Hindsight is 20/20, and now it almost appears as a great comedy of errors, each tragic mistake piled on top of another to create the most incredible disaster I’ve known thus far in C’s life.
Once I found out who was going to do “the talk,” I should have stopped it right there. I knew the person, did not have a good feeling about him, and had never really connected with him during his tenure on C’s special education team. He told me I should not be there during the talk. C’s teacher told me I should be. I went. Yet I was silent.
I listened in the back of the room while the talk turned into a twenty-minute free for all discussion about why the kids didn’t like C. “Oh, I know, I know!” one little girl squealed, eagerly raising her hand to share as if it was some kind of contest she wanted to win. She spoke up 11 times.
Still, I was silent.
I looked at C’s teacher across the room. Her head was down. I waited for her to speak up, to say anything. I was paralyzed while I waited for the presenter to turn it around, to get to the good part, to mitigate this disaster. I kept thinking he had to know what he was doing and he would fix it by the end. It would be okay. This couldn’t really be happening. I was silent.
As he wrapped it up, I sat there, silently planning ways I could get C out of the building before he came back to class. I thought about how I could never bring him back to school after this. How could he ever walk back in this building again? I fought back tears. I was silent.
I went into the hall to intercept C before he came back to class. The presenter caught up with me and said, with an air of fake sympathy and a touch on the arm, “That’s why I didn’t want you to be there. Sometimes it’s hard to hear the truth, isn’t it?” I was silent. “Sometimes kids just need to vent,” he concluded as he turned and walked away.
I was still silent then, because I could not speak. I simply could not open my mouth because I knew that only tears would come out. I went back into the classroom to grab C, who had slipped by me. As I walked up to him, two boys bounced around C’s desk. “We can’t tell you what we’ve been doing, but we were talking about you,” they taunted.
I grabbed C, deposited him with his special ed teacher, and went back into the classroom. I don’t remember why I did go back, but when I walked in, I heard C’s most loving teacher doing her best to erase both her silence and mine by turning the conversation around to what the kids liked about C.
“He’s really smart!” one girl said. “He’s always friendly,” said another.
I sat down, fighting back the tears yet again. In ten minutes, his teacher managed to undo much of the damage that had been done. That girl who spoke up 11 times? “I’m going to write C a note,” she said, “apologizing for being mean to him last week.”
I followed the kids out to recess, realizing by then we might somehow be able to make it okay. I still couldn’t say anything when C’s teacher asked me how I thought it went. It took me until the next day to process enough to ask her if she thought I was overreacting. This seems so silly to me now – as if I needed permission to be upset. But my asking opened the floodgates, and she cried with me as she told me how awful she felt about the whole experience.
I broke my silence. I wrote a letter to the presenter, knowing I could never face him without dissolving into a puddle of tears. I sat down with the principal of C’s school and the district special education director. Every teacher on staff heard about the incident (albeit not through me), and many approached me offering kind words. I heard through the grapevine that the presenter was distressed by my letter; he didn’t understand what the problem was. He never said another word to me again, and by the end of the year he was gone. I’m not sure if he quit or was forced to go, but I’ve heard rumors of both.
I discussed the incident with very few people. The next morning, I sobbed at my best friend’s dining room table. I cried on the phone that night to my boss. Husband, my parents, and my brother and sister-in-law all listened to me weep. A a few far flung bloggy and real-life friends received an explanatory email after a cryptic facebook and blog post of mine.
It was the single most painful experience I’ve ever had involving C. I am so thankful C wasn’t there, and I would gladly hear all of it again if it meant he never had to. It’s nearly two years later, and I know I will never forget one moment of that most disturbing day.
But never again will I be silent.
It’s been several years now, but I still vividly remember the last interaction I had with C’s principal at his Montessori Kindergarten. “It doesn’t matter where you go,” he said to me. “He won’t qualify for an IEP anywhere. He’s too smart.”
That conversation took place the last day C attended his school, a mere three months into the year. I still fantasize about sending this principal the very full IEP C has had since then, coupled with his report cards (all of which show him at or above grade level in every subject). Being smart – or being on grade level – doesn’t automatically disqualify a child from having an IEP. How is it that I, the parent, knew it, but every single professional at that school didn’t?
As recently as last spring, I began to think about the day C would no longer need an IEP. Could he finally graduate from special education? I know he’ll always be his quirky self, but is it possible he will some day no longer need services? Then C started at his new school, in his small classroom, with his very observant teacher and a special education teacher who really gets it. And for the first time in years, we had an IEP meeting that was hard for me to sit through.
It wasn’t all about how great C is doing. This school wants to increase C’s services, and increase them dramatically. While there were the usual wonderful comments about how bright and delightful C is, it was paired with comments that cut to the bone.
“C is being unfair at recess. He’s cheating at tag, and the kids don’t like it.”
“C got S in trouble when he told the teacher S had hit him when he hadn’t.”
“We can’t let him get away with things anymore just because he’s cute.”
Ouch, ouch, and more ouch. It was a sleepless night for me. I was frustrated and angry, despite knowing what they said was absolutely true. I knew I was being completely defensive - I knew it, because none of this was a surprise to me. C does cheat because he hates to lose. He doesn’t seem to notice how much it irritates other kids when he does that. And S has said mean things to him since day one at his new school, and he’s a little obsessed with S now. Saying he’d been hit was probably C’s way of lashing out at S. And darn it all if C’s dimples can disarm me to the point of distraction when I am trying to redirect, give consequences, or otherwise discipline bad behavior. Let’s face it, the kid is beyond cute by any standards, and it has probably gotten him out of various situations over the years.
But what was beneath it all was what disturbed me the most. Yes, C is doing well, he’s delightful, and he’s made astounding progress. That is always clear. What I realized, however, is that his particular struggles haven’t really disappeared as much as I thought they had. C’s challenges are simply more noticeable now because he’s in a smaller class. It’s probably not that C has been so steadily improving that his old school wanted to cut his services - it’s more likely that they just didn’t notice how much he needed them.
“Mommy, you should watch channel 598 because it’s a good channel for grown-ups! It’s called ‘Adult On Demand!’”
“I love you, Mom, for all your funniness.”
“I think it’s a boy movie for all the farting.”
“Mommy, how did I get inside you before I was borned? Did you swallow me or something?”
“Daddy, can you teach me to fall asleep as fast as you?”
“How many feet above us do you think God’s throne is?”
To the lifeguard at the pool who gave C a bandaid when he scraped his knee…“Thank you, I think you saved my life.” Followed quickly by, “I want to go somewhere sometime and NOT get bonked.”
* * *
C: “Do Ga and Pa have kids?”
Me: “Yes, C, your Uncle T$ and Mommy are Ga and Pa’s kids.”
C: “No, not you, do they have real kids? You know, kids my age?”
Spongebob Squarepants, a creature I had hoped never made it into our house. C has gone through several fascinations with cartoon characters from Dora to Thomas to Wubzy. Fortunately, he skipped Barney and the Wiggles. I thought C would skip Spongebob too, but he is all the rage at our house right now.
Actually, I find the little yellow guy fairly funny. There are moments of hilarity in that stupid show that go far beyond kid humor. And the fact that I seem to be able to imitate several of the charaters’ voices spot-on seems to be not only a useless talent I didn’t know I had, but also a source of endless enjoyment for C.
All silliness aside, I now love that little yellow guy like no other cartoon character that has ever graced our television screen. For you see, Spongebob Squarepants has done what years of feeding therapy could not get C to do. Spongebob singlehandedly convinced C to eat something he’s never really eaten – the dreaded multi-ingredient dish.
You see, C is a single-ingredient kind of kid. Plain chicken, with nothing on it. Plain rice with nothing in it. Plain hamburger – just the patty – with nothing else. No bun, no lettuce, no tomato, no nothing. We don’t do casseroles at our house. No soups, no salsas, no dips, salads or anything that requires a recipe, because that would have too many ingredients.
But tonight, after listening to C go on and on about wanting a “Krabby Patty,” I finally decided the heck with it – I’ll risk the wasted food. I confirmed numerous times that he actually wanted a turkey patty ON a bun WITH ketchup on it PLUS avocado AND tomato. All. At. Once.
And C proceeded to eat the whole thing. Thanks, Spongebob. You’ll always have a place at our table.
The world is now our oyster. Today, with one simple event, I feel as though millions of possibilities have become ours to explore. For the first time in C’s life, he went to and ate at a restaurant – from the menu. First. Time. Ever. It bears repeating.
If you don’t know about C’s eating challenges, see here and here and here. It’s been arguably the most difficult part of his journey with autism, and the one least understood by just about everyone. It’s one of those things that doesn’t compute; how could anyone possibly have to learn how to eat, and how could anyone actually be afraid of food? It’s so far out of most people’s experiences that they can’t even comprehend it.
Our lives literally revolve around C’s eating, or lack thereof. We are always home at mealtime, we stay in condos when we travel so we will have a kitchen, and we never run errands without carrying whatever food and drink he may need. We don’t “go to the game and grab a bite” along the way. It just doesn’t happen. C doesn’t even feel comfortable sitting with us in a restaurant while we eat, so somewhere along the way we stopped taking him, and mostly stopped going ourselves. I remember the last time I really sat in a restaurant with him - he was probably three years old (at least five years ago) and he sat across from me at Chili’s, eating his meal brought from home after a visit to the neurologist.
For C, doing what he did today is the equivalent of bungee jumping for someone with a fear of heights, running a marathon after years of training, or doing the one thing you never thought you could do. And while my head is still spinning from the emotional high, I know that it is not so simple as to be a problem fixed. It may be months before he is ready to make a repeat performance, and not everyone will have salmon with nothing on it, white rice with nothing on it, and mandarin oranges that I could tell were the exact same brand he eats at home. And still, I know that most people won’t realize the magnitude of this event, so I’m not sharing it with the general masses. But that’s okay, it will be our little secret.