Friday, March 23, 2012

The Pink End of the Spectrum

From an early age, my son has been "different." Looking back at his many quirks, I've learned where to attribute and how to identify them as either sensory issues, problems with communication, difficulty taking the perspective of others, lack of flexibility ... but there is one set of quirks that we have not explored so much, that has not yet entered into his IEPs, behavior strategies, therapies and all that we do to help him socially. It is something that until now we had not yet been called to define or defend. But clearly, I knew this day was coming — the day I'd have to address the fact that my sweet son is a girly little boy.

His first word other than Mama or Daddy was "shoe." He loved shoes — colorful shoes, shiny shoes, all shoes, including women's shoes. He didn't discriminate and didn't see any reason to.

At 2 years old, he not only obsessed over Thomas the Tank Engine, cars and trucks, but also he had adopted a pink plastic tea set his sister had abandoned and would play "Tea" at a little red table. With this game, he not only seemed to imitate me (I drink tea in the morning, his Dad coffee), but would also engage me, silently offering me a cup as we went through a ritual full of warmth and comfort. We often shared "tea" together whether at his little red table or at the breakfast table and so this game was one of my favorite. I would have never suggested he not play tea with me.

We've seen his girlish-ness emerge in many ways. I was proud when he continued to wear his favorite pink polo confidently explaining "some boys like pink." I did draw a line when he asked if he could wear a dress his sister had rejected — "no honey, that wouldn't be good. They are comfortable, but I'm afraid you'd be teased at school." He completely understood.

Given his intense appreciation of women's breasts, I've never been really concerned he was gay. I was most concerned he'd be called gay. Still, despite this fear I have completely embraced his girlishness as have most of the women in his life. We adore his hugs, melt at the sight of him carrying a toy with him everywhere and are absolutely charmed when he compliments the change in our hairstyle or our choice of lipstick. To us women, he just seems a bit too young for his age, but I can fully imagine what he faces with his more quickly maturing peers.

Well it happened. Last week, one of the rougher kids in his 4th grade class said, "you're gay." The surprising part for me was, according to C.S., he responded that, yes he was gay. Apparently that was the extent of the exchange.

Even though I feel certain C.S. has absolutely no idea what this all means, I actually think he handled the situation very well — he probably shocked the little brute into silence with his complete acceptance. Still I am extremely concerned that C.S. has just assisted in painting a large target on his back and that there are more attempts to single him out or bully him to come. My threat level is at RED and I have sent an email notifying his the teacher, the principals and the special educators at his school of this and other, albeit milder, incidents of taunting in class. I feel we've engaged in a new social challenge, one in which we will support him like any other — asking for tolerance, hoping for acceptance but poised, a bit more now than before perhaps, to defend him.

Silver Lining: My son is such a loving little guy, open to all sorts of differences in people. I asked him what he thought it means to be gay. He replied boys who kiss boys. Since C.S. would hug and kiss absolutely everybody if we didn't stop him, apparently he thinks he qualifies. I actually believe he is mistaken and that he's merely a loving, accepting, slightly effeminate child. But I do know this, whatever he is, whatever his self image, I will support him and intend to protect him with every fiber of my being, because I love him. There's no end to how far you will go when you love someone. How could anyone define love when it is so boundless, so infinite.

Monday, March 12, 2012

More Returns

Friday was a rough one featuring yet another flashback from school days past — C.S. bolted. He ran away, out of the school building and hid, out of sight, at the edge of the school grounds. This is something he hasn't done in a long time, something that has never happened at his new school.

Obviously there's more out of balance or off-kilter here than I can blame on a new iPod. I admitted to his classroom teacher that I was at a loss to explain it when she responded, "It's 4th grade boys. It's hormones."

Oh no. Is this what I'm in for?!?!

Silver Lining: He’s growing. He’s maturing. He’s beautiful! He’s mastered so much and I’m sure we have it within us to face the next set of challenges. I am grateful that we have enjoyed “balance” for as long as we have. (I’m thinking it still can’t compare to the havoc wrought by a middle-school aged girl’s hormones, can it?)

Thursday, March 8, 2012

Active Duty

Still mulling over things; Monday night's tantrum, my still on-going debate about whether to be so up front with my son's diagnosis or not (despite saying yesterday it was decided)...those sorts of things.

Going to be quick about it:

Diagnosis Debate: One thing is certain, I do a LOT and I do it daily to keep my son balanced and functioning. (For example, yesterday I drove almost 2 hours to a doctor's appointment and 2 hours home again. I have enrolled him in a study on how to combat weight gain in children who take Abilify. He has lost 10 pounds. We are all very happy!) His autism is managed. Almost in defense to my explanation that my son is on the spectrum, I'm often told "he seems like most kids." What most people don't realize is how actively we're working to keep it so he seems like most kids. What is most different right now, is the intensity of our parenting required to achieve his "normalcy."

The tantrum: Inevitable. No lost ground here, just the status quo (even if it didn't feel so). A big aspect of what I do these days is "managing expectations," not only my son's but also my own. To think, "what?! a tantrum, we're back to that?!?" is not productive. Basically, I've decided the best way to summarize the situation is something like this: C.S. loves electronics and screen time. We gave him a hand-me-down iPod. This was a very exciting change for him and it upset the balance we had achieved. We were aware of problems but realized too late that we needed to re-stabilize his relationship with his electronics. Hence tantrum. Lesson learned: There is no "cure," no "fix." We will more than likely always try to be as aware as possible to what is and is not working and if we slip, then we will once do our best to maintain/return to a balance.

Tuesday, March 6, 2012

Return of Tantrum

Looking back, there were signs. Not only that, but a larger pattern was recognizable too. I might have seen it coming, but I didn't.

I suppose I've just been enjoying how well everything has been going. School has been going well. Swimming classes had gone so well. Much of our life has become typical, or seemed so. That's not to say I'd ever get to the point that I'd think C.S. was "cured of Autism." I fully accept his is a life long condition. But I had begun to question whether being so open about his autism diagnosis with every one I met was necessary any longer. Just today another mother picking up at the school remarked to me that my son was "so great with people."

Last night, a category 5 meltdown hit us blindside.

While shaken by his screaming, his fury and his obviously overwhelming emotions — we dealt with it, with the old familiar ways. My husband and I remained surprisingly calm about it all, on the surface anyway.

And today, C.S. is once again a happy, charming, perfectly elated 9-yr old boy that most the time seems like any other. One might never imagine the screaming fury that can and did overtake him last night. It will echo for a long time in me. Especially his words. Last night, he said, "I feel like I want to kill myself."

This sentiment grew from a horrible 2nd grade school year during which time he experienced bullying and which I know was a direct result of him having lost services. The deep depression he encountered, his escalating feelings of atypicality, his words this is why I sought to embrace his autism diagnosis in the first place. It was his diagnosis that enabled me to reinstate services, find a support group for myself, find countless resources and information, and got us to this point of feeling almost typical. Embracing autism is what made all the difference.

I suppose this is why at pick up today, when the mother remarked that my son was "so great with people," I replied, "Well, he loves people. But actually he's not great with people. He's on the Autism Spectrum so he actually has a lot of social difficulties, with his peers anyway. But he's great with adults."

Silver Lining: My son IS "great with people" or can be. Actually, most adults we have encountered don't recognize anything that seems atypical about our son. If they do, they are usually first charmed by his quirks and it takes a good long while to notice a down side. This of course is no accident. I'm going to go ahead and take credit that all was made possible by the services and therapies and knowledge we've gained and employed after accepting Autism. I don't push Autism out there because it's some sort of medical fad or trend, not to gain sympathy or attention, but for understanding. I'm proud of all we have accomplished. And, as I was reminded yesterday, I'll need to remain vigilant, I need to hold onto it. We'll be adopting and adapting strategies for his entire life.

Monday, March 5, 2012

Out Reach

I've realized, I'm taking a new step, a next step maybe.

We've been looking for a church in our new home town. We've settled upon a choice and are now seeking a comfortable place there. I mean this in the most practical sense. The first thing I'm doing is trying to find a spot in the cavernous stone nave that is not too loud or too echo-y; one that offers an escape route where we can slip in and out as need be without being disruptive; but ideally also where the children can become engaged with the service so that they might actually "attend" to it.

Yesterday, my daughter and I sat in the balcony. This time, I had left C.S. with my husband who was home sick. I was most pleased to be joined by a friend who knew of my concerns and had previously suggested the balcony. Just before the reading, she leaned over to me and quietly said, "Observe him" indicating an older boy in the pew before us.

I was apprehensive, I instinctively worried about any sort of possible judgement. But as the readings began, I was unexpectedly comforted by what she was showing me. Quickly folding his legs criss cross, the boy rocked and made odd noises while gesturing wildly and frantically with his hands and fingers. He kept his voice quiet and his hands close to his body with his back and shoulders curled around himself. His grandparents (I assume) didn't stop him or try to still his hands but only occasionally rubbed his back admiringly. I recognized this immediately of course and quietly explained to my friend, "he's stimming, [C.S.] does it too."

Later, I had a moment to talk with my friend. She is the most understanding woman, which means she didn't understand at all why the boy acted the way he did but she was openly curious and wanted to understand better. I briefly explained more about "stimming."

As conversations do, we moved onto a related topic, a friend of hers who she has difficulty understanding. She confessed she had begun to suspect her friend had Asperger's. I offered two new tools for understanding, the phrase "Theory of Mind" and the explanation that autistics have difficulty taking the perspective of others. A flash of both recognition and relief hit her instantly as she exclaimed, "Yes! That's it precisely. Oh my..."

And I was enjoying these wonderful moments —  this caring woman who I am proud to call a friend was now better able to offer understanding to an odd child she didn't know; support to a friend she knew as well as she could; and of course she was being incredibly accepting of me and my family.

Silver lining: I am comfortable enough, feeling just competent enough, that more and more, I find myself looking beyond our family's needs. Bouyed by yesterday's friendly and open conversation, I found an opportunity to act more directly this very morning. Seeing a man in the distance that I had met once, heard about plenty and had strong suspicions was struggling with autism, I made a point of making the detour to chat for a moment and reintroduce myself if need be.

The sad part is that, just as my friend's friend said she had never before been invited to someone's home, I realized how very much this man was feeling isolated. He complained to me about gossip — clearly he feels victimized by it and misunderstood. Ah, but the community of supportive and understanding people is growing. 

I have happily realized a new role — of education and outreach. Of course many other spectrum mom's have realized this before me. This was simply my moment, my understanding that I had crossed over to that next level. At the root of this is my conviction that autism will be a life long condition for our entire family — thankfully it is one that is positive now. We are discovering our many strengths and grateful for our different ways of seeing, thinking and acting.

Saturday, February 11, 2012

Two Exceptions do not make Average

I ran across a quote today on Hoagies' Gifted Education's web site that resonated hugely with me and our experience:
“While parents of all children who are not in the mainstream do not have an easy time in our society, the fact that 2e children’s disabilities mask their giftedness, and their giftedness masks their disabilities, makes it incredibly hard to get the “experts” to listen and to understand that you can’t just average the two and say this is an average child.” − Joan Affenit
How I wish I had this in my arsenal of knowledge when facing off against Mrs. Wall back in CT. Ah, but move on, move on. And we have, to a much better place with a much more understanding school system.

Sunday, February 5, 2012

Acts and Intermission

We've been busy moving, settling, developing a, to anyone who actually reads this blog, thanks for returning here too. There's been plenty going on of course, more than I could actually process...up until now.

Now, today was Super Bowl Sunday. For a family like ours that doesn't watch T.V. at all, much less sports, and doesn't go to movies, it was an unusually quiet, wet and rainy day with not much to do. We had only one plan on our calendar, to go see The Merry Wives of Windsor, a production my husband had supervised and which involved his students. Another family in the neighborhood who moved here the same time as we and who also have two children at our same two's schools were going. I really wanted to join them. It would be a chance not only to see the opera but also to socialize with friends.

Knowing full well that social settings and theater, even live theater, will present challenges for my son, I began laying the ground work right away.

First I explained to my friend that we'd get our own tickets, after all, we could get at least 2 for free. But it was also a good excuse to sit separately and give us a little "room for error" so to speak.

Second, I immediately set the stage for a possible early exit. With my husband out of town, I would not be able to divide and conquer. It was unlikely that C.S. would be able to sit through the whole production, but then again, he might -- I'm always open for that -- and so, I immediately explained to my friend that although we'd go, we might have to leave early.

Lastly, I encouraged myself with the upside of it all. My husband and I have been talking about the production all week. This was a great chance to see it. C.S. couldn't sit through the last student production we went to, but he had talked excitedly about it for weeks afterwards. And I knew DeDe would love every second of it. She had already seen the stage being built, but her appetite for theater is endless. Plus I could support her in making new friends — and me too for that matter. After all, making a few quality friends is important.

We arrived early. The kids were well fed. I had not only some light snacks and magazines but also ear plugs and sun glasses in my backpack to quell sensory input. And despite DeDe's complaints, I had C.S. sit between us so that he wouldn't bother any unsuspecting strangers beside him.

Incidentally, the theater itself was just as prepared. They had clearly posted that the production would include fog and strobe lights. Although these wouldn't be a huge concern for us, I most certainly appreciate such awareness and consideration for the audience's needs.

Curtain Up
The house lights dimmed and my anticipation was at edge. Throughout the overture, I watched my children's faces. DeDe was hooked immediately. C.S. was at best reluctant. But, then again, he was at worst, reluctant. He squirmed a bit, not badly. He sat up in his seat a few times, but I don't think he blocked anyone behind him. He wiggled and tried to get comfortable in a confined chair but I never felt that he kicked the back of the chair in front of him, not egregiously anyway. And he spoke a few times, of course waiting until it was quiet and no one was talking so that I could hear him. (I'm sure when I shushed him, appearing to turn the table on the rules he was frustrated and confused.)

Pretty soon, we had made it all the way through Acts I and II to intermission. While the rows around us were full, no one had come to fill the rest of our friends' row and so I had already decided to take the opportunity to check in with them, chat a bit at intermission and see if DeDe could stay on sitting in one of the open seats in their row, allowing me and C.S. to make our exit. I was feeling like it had all been a success. C.S. had made it with only mild issues. We had all been social and stayed in touch with Dad's project. Win-win-win.

The Drama Begins at Intermission
As the house lights came on, the elderly woman sitting in front of my son turned into an aside and complained loudly to her companions, "that child behind me kept kicking my seat." Even though she hadn't addressed us, it was meant for me to overhear. I did what I felt was best. I got her attention and I apologized.

Clearly she hadn't expected me to actually respond or engage her in conversation. This time it was she who squirmed in her seat, and as she did, she seemed to sneer at my apology and refused to make eye contact. That was when I got offended. I added, "As I said, he's young and it's understandably hard for him to sit through an opera. What surprises me is when older folks who know better can't hold their tongue." As I walked down the aisle with my children, her male friend jumped in defensively and snarled, "Why did you bring him then!"

What is the path to resolution? I know this sort of conflict is something I will run up against again and again. I should have just left it at the apology — I know that. I let my ire get up and I shouldn't have. Of course a trio of elderly folks can have no idea how successful C.S. had been. Only I am aware of the many alternatives we've experienced — crying, refusing to enter the theater, running out of the theater, screaming...squirming is so incredibly mild! Having been caught in an unexpected encounter, I can understand how we all got defensive. And while I think the old lady could have handled herself better and I wish she had been able to address us directly -- honestly, the only person who could have handled it better, was me.

Silver Lining: Other than one unpleasant exchange at intermission, the day had been a success. My preparations and C.S.’s behavior wer good enough in fact that I consider it near a climax, as good as I expect our theater-going to get. And yes, I plan to keep on going. Next time, if an apology is required, and it might be, I am fully prepared to close the curtain there and simply absorb whatever comes next. Our goal is to prepare an exit strategy that allows retreat while is also careful to protect myself and C.S. against feelings of defeat.

Why did I bring him? OK, that stung, but only for a second, just enough to help me become more resolute. I bring him because while we have given up hope of ever seeing a family movie, live theater is something we DO. We all love it, even C.S. Even though he has a hard time sitting through a production, theater is much more manageable where as movies definitely are not. And it prompts important discussions about why someone acted the way they did; about reality vs. fiction; about how people "act" or "act to deceive." -- all things which continue to elude and frustrate C.S. but that are necessary to comprehend. And so, I bring him to the theater because it presents so much to him, to all of us in our discussions afterwards. And it produced this return to my blog and a new silver lining.

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