Thursday, September 23, 2010

Crusades

I haven’t posted in a while because I’ve been on a crusade. That’s what my husband calls it when I get up in arms defending our children—most often our son. I have fought some unlikely foes—a kindergarten teacher, the school social worker and now, a boy scout leader.

I realize these titles can be worn like a halo. These are the good guys. And since I’m the one fighting them, then it follows that I must be the one in devilish red or black, the bad guy.

If it were only so simple. Because of course, I fell for the sanctity of these well-known images too. I signed up for boy scouts trusting that if anywhere, here was a community that could appreciate my little guy. It is very unlikely he’ll ever become an athlete. He won’t have an opportunity to win sports awards and trophies. I turned to the scouts to give him not only a community to belong to, but also a forum that will recognize and award his achievements. I wanted the Boy Scouts and everyone involved in the local organization to be, not just good, but everything it professes to be, every last one of them.

But, I’ve experienced parent-run organizations such as this before. They are as suspect to social pressures as anything else. And though determined to make positive changes for my son this year and despite my efforts, I could not protect him from falling victim to what appeared to be a combination of social jockeying, misguided leadership, persistent inconsideration and then, what got me really riled, an outright snub directed at two members of our den including my son. And so, my latest crusade ensued.

It is almost over now. The fire has faded to embers. At this point I believe that a misstep like this will not happen again, that these leaders will be more aware of the need to manage transitions and of the care required when publicly recognizing the boys’ achievements. I confronted a small but preventable injustice and achieved a perhaps minor social change however it is one I am certain will grow to benefit not only C.S., but also others. Unfortunately, I also know that by fighting, I have made enemies.

It seems, for every social gain I achieve for my children, I threaten to lose just as much in the same arena.

It is hard. It is very hard on me. Just as I wish for my children to have friends and feel like they fit in, so would I like the same for me. I can imagine this would be so much easier if I’d just play nice and get along, especially with the “good guys,” the right people and others with social influence. “If you were smart, you’d just drop it,” is something I’ve heard before.

But, I’m just not like that. He was innocent, is innocent. And no matter who you are or how much social influence you can yield, if you intentionally hurt my child, I will throw every sharply articulated word at you I feel is appropriate and hit my target as squarely as I am able in his defense. Which is what I did.

I’ve been snubbed since. Of course I notice. I spend every day helping my son realize the importance of making eye contact, teaching him to take the perspective of others, helping him perceive the many unspoken messages involved in our language such as facial expressions and other subtle clues that signify when contact is acceptable and when it isn’t. How ironic, that similar deficits are intentionally employed to snub him…me…us.

Of course, I’d like to think people are self-reflective. That once the immediate defenses are down, whatever the situation, in the end it will resolve into some sort of greater understanding and all of this will be somehow worth it. But I don't think that will happen.

Expecting reflection of others, I have reviewed my own role in this quite a bit. Did I get too angry? Do I fight too often? Should I have just played nice and let it go? I’ve concluded:

It is important to confront a bully. Until recently, I’d never faced bullying before. I’ve been aware of cliques, easily avoided them and had not become a target until my forties. But now, as a grown woman with young children, I seem to have found a source of plenty. Perhaps it is because I cannot convey the economic status or social support afforded me through grade school. Perhaps it is because this area is so densely populated—although outside “the city,” we are far from the peaceful countryside. But much of it seemed to begin when C.S. entered a mainstream school.

C.S. received so little social support at school that he was the target of relentless group bullying last year. He dreaded going to school. He cried and was so distressed he said, "I just wish I were dead." That's when my whole approach changed significantly. I quit my job. I began the process to have him reinstated to receive services at school. And I became as involved as possible at his school and in his activities. I was determined to defend my son.

So there I was standing ready and defend him I did. So now, I am feeling unfairly slighted by this woman's friends, but at least I'm not as vulnerable as C.S. was last year. I continue to remind myself, this is uncomfortable and unfortunate, but this I can face.

Here’s when I pray to my grandparents for support. After their death, I found a letter from the most reputable teaching hospital in the state diagnosing their daughter’s condition. My aunt had Down’s syndrome (what was then described as Mongoloidism). The letter included a professional recommendation that they hand their child over to a family on a farm or in the country where she could grow up in peace because she would never thrive socially and that raising her themselves would have a negative impact on other members of the family. They did not take this recommendation.

That does not mean the doctors were wrong, that anyone was wrong. The doctors’ prediction was realized exactly. My aunt did not thrive socially. Precisely due to her condition and as predicted, her presence among them had a considerable, perhaps negative, impact on the entire family. My grandparents certainly faced slights large and small that shook their beliefs and the very foundations of their sense of community—the greatest of these was when their church asked that they no longer bring their daughter with them to service because she was too disruptive. As my aunt grew into her teens and then twenties, she became increasing isolated, shunning anyone but my grandmother and practically living in the basement. Sadly, my grandmother seemed to grow more socially withdrawn right alongside her.

But because my aunt thrived well into her twenties (at the time, unprecedented); because, although isolated, she lived with her family; I believe my grandparents were one of the many who helped break down social barriers for Down’s children and the families that followed.

High-functioning autism is not so easily recognized. Being harder to identify, it is perhaps unrealistic for me to expect my efforts to yield a similar increase in social acceptance and understanding for my child. If I were to exact a social change, which is something I desire, I have decided that I must focus on this: to deter the spread of intolerance, to encourage sensitivity and to defend a parent or child from being cruelly targeted for social ostracization simply because they are quirky, odd, outside the mainstream or otherwise different. I'd like people to be not only tolerant of but appreciative of differences.

And although we've had a rough beginning, I have thankfully received enough support that I now once again feel confident Boy Scouts will be the perfect place for both me and C.S. to achieve our goals. Here's looking forward to another exciting year.

My silver lining: I admire my son for his unique strengths and amazing abilities. I admire my daughter for her sensitivity, caring advocacy and tolerance. I admire my friends for their simple kindness backed by truly individual beliefs and integrity. And while my crusades may have distanced me from some socially, may have caused me to loose a potential friend or made the road ahead bumpier for me, it has brought me closer to those I treasure the most, including some that I thought I had lost. Although I still miss them dearly, I feel my grandparents’ presence more than ever. I am proud of their long-ago decision to keep their daughter despite social consequences so accurately predicted. Although the doctors were correct in their judgment, in the end, my grandparents’ decision was what was right. By example to me and to the greater community, they showed that there is something more valuable than protecting one’s social status—loving your child. And so, when I feel a little shunned I tell myself, now I can understand exactly what my children are facing. By joining them, they do not have to go it alone. I’m right there with them. And sincerely, I am certain, there is no place I’d rather be. It just feel right to me.

Monday, September 13, 2010

"Monday, Monday, Can't trust that day"

Knowing how much C.S. loves to hug those he likes like someone he loves, then it is easy to see how my husband would expect a hero's welcome when his Charming Son woke to find him home. But if I felt the week had been arduously long, then I could only imagine how much it affected our son. The world had changed; from summer vacation into school, from bear hugs to five-finger squeezes and so much more. And when my husband went out and gained a fresh, new perspective, unfortunately he lost some of the old one in the process.

I can't be sure how C.S. was feeling, but I'm pretty certain that whatever intoxicating cocktail of emotions it was, it was just too much for him to process on a Monday morning. When John woke him up, fully expecting one of those fabulous hugs, he was met instead with reluctance. Then C.S. hid under the blanket and said "I don't want to look at your face."

John was hurt. He had been flat-out, coldly rejected. And he knew too well how he felt. Unable to control himself, he responded, "Can't you see how that makes me feel?"

How I wanted to step in and remind John that, well actually no, he can't, remember. He has trouble taking the perspective of others. But knowing it and experiencing it, is very different.

It had been a long Monday ever since. We arrived late to school. The scout meeting went waaay too long. The two hour agenda was boring enough as it was, but complicating that, the room is large and echoes. It hurts his ears. C.S. just couldn't attend at all. And then...well, suffice it to say it was an overwhelming Monday—a jolting transition, a difficult new beginning. Monday's are notorious for that very reason.

It reminds me of the song, appropriately enough by The Mamas and the Papas:

Monday Monday, so good to me,
Monday Monday, it was all I hoped it would be
Oh Monday morning, Monday morning couldn't guarantee
That Monday evening you would still be here with me.

Monday Monday, can't trust that day,
Monday Monday, sometimes it just turns out that way
Oh Monday morning, you gave me no warning of what was to be
Oh Monday Monday, how you'd leave and not take me
.
Silver Lining: None here tonight, not to be penned anyway. I trust, from practice that it is there, that it exists, but I'm tired. I leave it to find in the morning and this blog, open ended.

Sunday, September 12, 2010

Day of Rest

Sunday. It's a day I've been looking forward to—because today is when I expect John, my husband, to finally return home after a long, 10-day trip.

He left for the airport directly from the school and our PPT. This was our fourth meeting and last in a long series since March to develop the IEP (Individual Education Plan) for C.S at school. After he left, he unfortunately missed the lighter exchanges, almost chit-chat, at the end. It was then that the Speech/Language specialist helped me realize one key reason C.S. may be missing so many social cues. He over-focuses on some areas and so completely misses others. From this single catalyst, multiple connections clicked into place: he focuses on hair, skin color and body shape; aha – that’s why it so distressed him when John shaved his head (he demands that he grow his hair again almost weekly); that’s why it is almost impossible for him to recognize older women (their grey hair with its similar color and texture and often length completely throws him); and so does this also mean that he doesn’t recognize faces. These sorts of thoughts, these busy minded attempts to make connections have been clickety-clacking in my brain ever since.

Add to that the daily hug awareness I’ve adopted. I’m actively trying to teach C.S. such subtle skills as how to approach someone, ask if they want a hug, what to do if they don’t and if they do, how long to hold, how tight to squeeze, how often you may hug a non-family member.

And it’s been, not only the first week of school, but also the first week of activities like Karate and preparing for Boy Scouts that resumes on Monday. As always, I am particularly vigilant when it comes to transitions.

It has been a longer than usual 10-day week.

I am relieved that, so far, everything has gone very well. But, I’m tired. Incredibly tired. And not from lack of sleep. I am just worn out from all this awareness. I’m rest deprived.

When I came home last night, all I wanted to do is loose my brain to Plants vs. Zombies. That’s a game C.S. plays. When trying to share one of his obsessions, I became addicted to it too. It’s a great way to veg-out.

But when I play now, I can hear the many ways C.S. tries to make me aware of his world and the way it works. I was surprised when he pointed out the background tunes. His favorite is the rooftop music and his second favorite is the nighttime pool for example. I had never even realized it changed. I usually tune out the music to focus on the game. I also never paid much attention to the structure of its various levels. On the other hand, C.S. congratulates my every achievement by telling me something like “Great work Mom. Now you have only one more level before the party and then you’ll be on a fog level.” I am now aware of this broader structure. And I am also impressed by my son’s fluency and finesse with the game’s every detail.

But between trying to understand his level of awareness and share my different awareness with him, I’ve had it with this incredible focus on background detail. I feel the need for a soothing Sunday ritual. But I’m not going to figure that one out today. That need will have to go unanswered or at least remain unspecific because I’ve got too much on today’s to-do list already. I’ve got to stop blogging, get some work done to earn money, help C.S. with a boy scout poster, find his uniform, pack snacks for Monday morning, etc. etc.

My silver lining: I’m married to a caring, sensitive man. He travels a lot, less frequently now than he once did. But when he returns, his time away allows him a fresh perspective and us some objectivity. If we've made progress, it'd be he who will be able to see it. And I’m looking forward to seeing him, not only because I miss him and his support terribly, but when I get a fresh horse in this race—that’s when I can finally dull my senses and get some rest.

Tuesday, September 7, 2010

Homework: Hopes and Dreams

C.S. came home with a homework assignment, for me. His teacher asked the parents to fill out a sheet describing "my hopes and dreams for my child's academic and social growth:" For my answer, I was allotted 5 lines for academic and 5 lines for social. Gooodness!! Has she no idea what she has asked of me or of who maybe? For starters, 5 lines is not nearly enough space. I've been trying to keep my posts trim, but I've got plenty to think about and apparently even more to say on the subject.

This is what I turned in:
Academic Growth: Having gone through so many tests recently, C.S. has confirmed for me what I instinctively know and witness everyday; that he is, in so many ways, an exceptionally gifted little guy. Academically, he excels in reading, math and where/when-ever his amazing spatial reasoning can come into play with a visual assist. Add to this, he loves to learn. He eats up facts and makes remarkably perceptive connections between them. He shows a talent for writing poetry. He is a gifted public speaker. He recently developed his own punctuation marks to indicate not only his intended placement of a dramatic pause but also the intended duration required to realize the most dramatic affect — that he achieved, beautifully (that his father thankfully saw, but I unfortunately missed) at 2nd grade literature night last year. It is my hope that C.S. can build upon his strengths and continue to push himself to his full potential even if that means he needs to work beyond the third grade level. It is also my hope that his peers will learn to recognize and value his skills and so discover one of the many ways C.S. so deserves their respect.

Social Growth: In some sort of karmic universal balancing act perhaps, my son's exceptional academic strengths are matched by an equally remarkable (if not more remarked upon) set of social weaknesses. Recently I have pushed hard and made it a personal goal that his social challenges be recognized and understood. Having succeeded in reinstating him to receive special services, I look forward to a school year of positive social changes for him. I have every expectation that the many caring and talented specialists now involved in his school day will succeed as they help my son overcome his social weakness and grow strong. But, distinctly separate from this is my hope that even though he may now be labeled as special needs and/or on the autism spectrum, he will receive understanding and compassion. I find my son to be endearing, charming, remarkably engaging and an unbiased champion for fairness. He is caring, loving and empathetic. And though oddly quirky, he is an absolutely wonderful individual — a trait he realizes with remarkable intention for his grade (as his recent insistence upon changing his name clearly indicates). Even while I hope to better socially integrate him, I have no desire to fundamentally change him. He is who he is. He is original. It is my dream that his peers will admire and value his wonderful uniqueness, individuality and distinctiveness among them.

Of course I loved that she assigned this. Though just three or four days into it, third grade is starting out with many positives so far. And by all indications, I'm happy to confirm what I've been told, that my son has a great teacher!

High Times

A couple of times, now that I’m out of the closet with my son’s diagnosis and being more obvious about securing understanding for him, a friend has said to me, “all kids are like that.” I heard this again at the beach yesterday.

The day so far had been perfectly carefree and relaxing. The kids swam in the sound, dug irrigated castles in the sand with a pack of other kids they had never met before but all had bonded quickly over shovels and the task before them. (I felt certain the oldest among them was an Aspie.) I got to read the Times, too much of a rarity. After a couple of hours when I began to pack up our stuff, we were all perfectly satisfied with our day at the beach. I gave DeDe and C.S. money to by a treat and off they went. The children happy, the other children friendly and inclusive, DeDe so helpful — our day had been perfect.

I had the car packed, but before we left, I got a call from a friend that they were at the neighboring beach (for which we did not have a parking permit). I wanted to stroll down for a quick hello. After we arrived, suddenly, this seemingly perfect day, got even better. I was welcomed into a friendly circle of people who freely offered cold drinks, delicious food and the opportunity to ride a jet ski (which DeDe happily accepted). The kids seemed to never tire of the playing in the sun, sand and waves and they obviously warmed immediately to the new pack of people. We ended up staying much longer. Unfortunately longer than I came prepare for. I didn’t have a towel, I didn’t have C.S.’s food. Despite the music and warm, relaxing atmosphere, apparently my over-vigilance began showing. When C.S. pulled suddenly, almost angrily, away from my friend to duck under the umbrella and I stepped in to explain, she stopped me short with what has become a now familiar friendly reminder that, “all kids are like that, not just C.S.”

She’s right. He was hot and tired and getting hungry. Any other kid in the same boat would get touchy. And she is also right that in more ways than not, my son is like every other little boy out there. But not only is he like them, there are also times when my vigilance detects definite sensory issues and autistic traits in children without a diagnosis. More and more I see little boys who are like him.

As hard as it was to leave, after five hours at the beach, it was simply time to go home. We left the beach happy and without incident. And we left the long Labor Day weekend with a pair of perfect summer days under our belt (the day before had been wonderful too). I'm starting off the short week very thankful for the summer with my children and grateful for a few absolutely wonderful friends.

Silver lining: C.S. is not overtly autistic. In more ways than not, he is like any other little boy under the sun. And I can go for days without my or my children’s friends noticing anything autistic about my son—which is also the definite downside to high functioning. He seems normal, sometimes quirky but then, when his neurological differences are more noticeable, that is also why everyone struggles to understand his inappropriateness. I know this silver lining well. And I know it is shining, blindingly beautiful but unfortunately, double-edged.

Sunday, September 5, 2010

Farewell Hugs

Hugs have become a problem. C.S. gives them too freely, too often. He hugs almost everybody, sometimes multiple times in one conversation. Sometimes too long, often too tight and even when he has just met someone, strangers may end up with this little boy wrapped around them in a loving embrace.

The first week of school, he was so excited to see everyone again. He hugged his former teacher 5 or 6 times before he could continue down the hall again. He hugged his friends, especially his wise little classmate and protector who, thankfully, is in his class this year too. And it melted every adult heart in the room when my little guy hugged his buddy because he was so genuinely thrilled to see him again. But, this excessive hugging will become a problem with his peers. It already was last year and even for some adults. Not everyone is comfortable with his hug generosity. But unfortunately, on his own, C.S. has no way to tell who does, who doesn’t, and/or just when it’d be best not to hug someone. All he knows is he loves doing it.

I realize all this of course, but there’s another side of me, the mother side of me, that cannot let go of his embrace. I might be more accepting of his hugs and his frequent, compulsive touching because I have known so many variations of it. And although there have been days where my skin is over-saturated with his touch and I actually cringe at the way he clings to me, of course I remember how difficult it used to be. I too well recall how I once struggled to hold my infant son, how he would squirm away and then press into me. I remember that I could not cradle my child—that the way I held him would be best described as wrestling.

And though, as he got older, we had finally worked out a comforting way for me to hold him — my hands pressing him tight against my chest while he pushed his head into my chin and dug his feet into my thighs — physical contact was still a battleground. Throughout his toddler years, he at times bit me, bulldozed into me or banged his head backwards into my nose and teeth. Loving him was not always so easy, at least not physically.

That his desire to get close to someone can actually be described as “touch” and “hug” still seems a wonderful milestone to me. But it has gotten out of hand. He’s a far cry from a toddler now and third graders can’t hug adults and strangers the same way Kindergarteners and even a cute first grader may get away with. We’ve got to make a change.

So after the first two days at school, when C.S. roamed the halls on a squeeze spree, his special education teacher taught him a new way to “hug.” She instructed him that from now on, he’ll hi-five as a special greeting and a double hi-five is his new “bear hug.”

That worked for a day. But C.S. missed the squeeze. So he suggested his own modification. Instead of a quick clap of hands, he wrapped his fingers into a clasp and then squeezed the other person’s hands. A fistful, but it was hardly the armful of satisfaction he once received. His new OT now stepped in with the next part of the solution — a neoprene blanket that she wrapped around him as part of his new sensory diet to deliver the deep pressure his body craves—but I’m sure it was just not the same as hugging.

So when, at the end of this first week, we visited his Social Worker [this is the therapist (more expensive financial obligation and longer drive) I decided to commit to] when he greeted her with his typical embrace, I mentioned the new hug policy at school and asked him to show her his hi-five bear hug instead. And they went into her office with a topic for the evening's discussion.

When it was my turn. She and I talked about how much I hug my child, when and why. I do hug him an awful lot. It began innocently enough. It was even later recommended as a therapy by his special pre-school teachers, physical therapists and the many books I read to understand his sensory issues better. Whenever he was overwhelmed with emotions or sensations, I calmed him down with a big squeezey hug; by holding him and rolling with him; by scratching his back, legs and head; by finding the right way to touch him. There were so many ways I delivered the many sensations he craved. And, ah-ha, yes, a number of our home therapies began with me wrapping my arms tightly around him. A hug was the comforting answer to so many things.

So now, as the therapist suggested, I will begin using other means to help my son. When he is upset or over-stimulated, I can wrap him in a heavy blanket, cocoon and swing him in the hammock or lay beanbags on his chest. But for a while I think this also means that gone are the days that I will scoop up my crying, sometimes thrashing son and hold in my arms until everything is alright, everything is alright honey, I’ve got you.

Silver Linings? Sometimes they can shine too brightly.

Wednesday, September 1, 2010

Black is Beautiful

We’re on vacation sitting at a busy lunch counter for a treat of pie à la mode for us and an Italian Ice for C.S. We’ve also been looking at bills from different countries pasted on the wall opposite us and are making a game out of it to keep C.S. engaged through the long wait. Interspersed among the bills are some family pictures and it’s these that have caught my attention; a beautiful daughter at graduation, a row of girls in matching dresses, a happy family assembled. Among the many obvious stories these pictures tell—of proud parents, happy reunions and accomplishments—one of them is that this family is interracial. He’s white. She’s black. The couple in the pictures is in the kitchen. They’re much older now than their photos, or at least he is. The color has drained from his skin and hair and his back has slumped apparently weary from his many years. She seems so different. She is tall, strong looking, her skin and hair is so dark. She also seems to be one of those women who do not age, at least not on the surface.

The pies arrive, but unfortunately, they’ve brought our order and not his. The Italian Ice is prepackaged and will be here quickly enough — which is also why I thought it would come out first, but it hasn’t. I could have prevented this, I think as C.S. wails and then drapes himself over the curved glass of their ice cream display. I try to get his attention, to calm him, but I am three stools away and trying instinctively not to make any more waves than we already have because a few people are staring. If they knew how hard he’d been working all this time, how successful he had been at waiting patiently, until now. But they don’t of course. All anyone can know is that there’s a little boy in a small space causing a big scene right in front of the cash register.

“Behave yourself young man. Sit properly in your seat,” commands the black woman in the prep area.

It’s her restaurant. It’s her customers. I recognize her every right to say this. I don’t mind it at all really, because although stern, her voice has a motherly warmth and command to it. But I am now nervous and en garde for my son. I’ve been trying to get his attention, but it is her C.S. responds to. He sits back in his seat when he wasn’t even acknowledging me.

While we are eating our warm pie and cold treats, she comes over to speak to C.S.— a friendly follow through now that he is behaving for her. And then he tells her, “I think brown skin is beautiful.”

The warmth drains from her face and we freeze, her and me, like two deer that have caught the faint scent of an unseen but familiar predator.

But C.S. pushes on, oblivious to such cues as a strong and sudden quiet. “I like blond hair too.”

She raises her eyebrow at this. She does not have blond hair. And she has little chance to comment as C.S. is babbling on with his enthusiastic attempt to charm her. At least he seems to have picked up on the eyebrow.

“Your hair is pretty too. But blond hair is my favorite. Those are my favorites; brown skin, blond hair and eyes that have a shimmer in them.”

She relaxes. She finds her voice again. She asks him what color his skin is. The situation becomes harmless and so I relax too. Because, although her voice hasn’t regained its earlier congenial warmth and confident command, I think she now realizes that while this freckled face white child is strange, his intention is kind and he is sincere.

And what can you say really when a little white boy tells an older black woman that he thinks the color of her skin is beautiful?

My silver lining: C.S. is quirky. He misses so much. He never realized there was something wrong about commenting on a the color of someone's skin. But he is kind and sincere. And if he can gain social skills but also retain some of this wonderful openness, it could be that my oddly charming son will change this world, for the better.

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