"The most wasted of all days is one without laughter." ~e e cummings

Monday, March 28, 2011

finding evan

I suppose this all started last summer, almost a year ago, when we brought Evan into the pediatrician with concerns about his tantrums and sleeplessness. After much reassurance, the pediatrician gave us a game plan and some Been-There-Done-That support that would carry us through the next four or five months. She also gave us the name and phone number of a Child Psychologist. I immediately scoffed at the referral. "A child psychologist?!" I thought to myself, "Evan does NOT need THERAPY. He's emotional and sensitive, but he does NOT need a CHILD PSYCHOLOGIST." But....the idea of reaching out for some help for Evan (and for Max, and for Sam, and for me) stayed with me and during every tantrum that followed, and though every bout of school and social anxiety, I thought about calling. I never did....it never felt Just Right....but I did give it some thought.

We muddled through the end of the summer and the beginning of the school year with some successes but also some difficulty (potty training was a smashing success, school was a roller coaster of positives and negatives, sleep continued to be an issue). A few months ago, I realized how Evan's internal sensitivities (anxiety, emotion-regulation) were bleeding over into the outside world....Evan was becoming more and more sensitive to external stimulation. It seemed as though, all of a sudden, he was extraordinarily bothered by sudden noises, background noise, textures, etc. We were changing/readjusting his socks LITERALLY dozens of times each morning because "something's not right!"  Bathtime became a shriekfest every time water was poured over his head. He suddenly hated drying his hands on a towel but was equally bothered by the fact that his hands remained damp after insufficient drying. The wind was painful for him...he would flip out if we tried to roll a window down in the car and don't EVEN get me started on the torture of being on a windy beach in Florida in February. And it wasn't just the wasted time that made this new sensitivity bothersome....Evan was having Horrendous Meltdowns each time he felt the seam in his sock, wind in his hair, water on his hands. Meltdowns that could not be Ignored. Meltdowns that were threatening to make our house a loud and scary place for Max.

It didn't take long before it occurred to me that Something's Not Right. And so I thought back to that phone number I had stashed away. Before I mustered up the courage to make the call, however, I read an article about Sensory Processing Disorder. I felt like I had written it about Evan. Now that I had figured out my son's "disorder," [gulp] it was time to figure out how to help him. And here's where I became a firm believer that There Are No Accidents. At exactly the right time, I ran into a friend of mine at the Barnes and Noble train table. The same friend whose neighbor was dealing with The Exact Same Thing with her son. The same neighbor whose son attends Evan's preschool and who called me to question everything I THOUGHT I knew about the preschool education of my kid.

So we sorted through the preschool conundrum, but were left with that nagging issue of Sensory Processing Disorder. You know what you should never do when you're worried about your kid? Google. Guess what I did? As it turns out, SPD is hugely co-occurant with other disorders of the social and emotional development of preschoolers....disorders such as Attention Deficit Disorder and disorders along the Autism Spectrum, particularly Asperger's Syndrome, which is often characterized by exceptionally high intelligence and language skills, but poor social skills, awkward behaviors, and poor emotion regulation. Sound familiar?

I could walk into a Child Psychologist's office today, armed with the online checklists I have completed, and make a case that Evan fits pretty nicely into any one (or more) of these categories. I could have Evan evaluated and he'd probably end up with some sort of label. Instead, I set up an appointment with the Child Study Team at our neighborhood elementary school. I was looking to, as my mom put it, "Spread the Blame." IF, at some point in Evan's education, it is decided that he does fall into some sort of category that does require special attention, I don't want it ever said, "Well, if only we'd known about this sooner..." or "How did they miss THIS?" I wanted a professional to hear our story and help us to determine what should happen next.

The Assistant Principal listened to my description of Evan and my concerns about his experience in school this year (or lack of experience...) and what I can do to bolster the social confidence and enjoyment of school in the future. She agreed that Evan is probably a "quirky" kid, and she was careful to dance around the word "Asperger's," though we both knew what she was alluding to. She was very supportive and understanding of my concerns and didn't diminish them, but didn't sound the alarms, either. She recommended a rescreening of his language skills by the Speech Therapist (with whom we met in October), but suggested a Wait and See approach for the rest of his social and emotional....stuff. Through talking with her, it struck me just how common "quirky" kids are....kids that kind of stand out from the crowd--and not in the Star Athlete sense--kids who may need a little extra time to figure out how to fit in, kids who may always prefer to hang with a smaller social group, kids who have nerves and worries and anxieties bigger than their little bodies can handle, kids who are a little quieter in public...but who have a lot to say on paper.

Kids....like me.

Lesson Learned:
Before meeting with the Assistant Principal, I felt this overwhelming responsibility to Define Evan. I felt like I could never truly help him to be comfortable and to achieve his own degree of success if I didn't Get Him. Turns out, I had been looking too far into the internet and not closely enough at myself. I DO get him....I WAS him. I was a wacky, emotional, stressed-out kid until I hit my stride in third grade. It was in third grade that my parents switched me to a Center Based Program for gifted kids at a different elementary school. I was, for the first time, truly surrounded by my peers. Kids who were just as far outside the box as I was...kids who carried the weight of the world on their tiny shoulders as much as I did. As much as Evan does. I don't know yet, of course, if he would even be eligible to attend a program like that, or if he was, if it would even be the right fit for him.

My point is....he doesn't need a label. Whether he is "Evan" or "Evan With Sensory Processing Disorder," it doesn't make a difference in WHO he is, or what our jobs as his parents are. We are learning about SPD and other disorders so that we can help Evan to handle his social anxieties and sensory issues. For example, we are working really hard to maintain our patience with him and his socks. We remind him that he can try to fix it himself first, and if that doesn't work then, if he asks us in a nice voice, we will help him. We're finding that if we meet him halfway like that, a lot of major meltdowns can be avoided. We may be gritting our teeth through the 17th sock change of the morning, but we can do that for him. If we ever find ourselves in a position where we believe he could benefit from some sort of therapy or intervention beyond what we can provide at home, we may need a label to get him the professional services he needs. Until then, labels are just words. Loaded words.

As I said to a friend of mine who is also parenting an emotional, sensitive child:

When Evan is in the middle of one of his meltdowns about something so ridiculous like having damp sleeves after washing his hands or not wanting his plate turned THAT WAY on his placemat, I try to remind myself that this is just part of his process. I don't have to like it, and I don't have to put up with EVERYthing, but it helps me to stay patient with him.

I know that, if given the choice, I wouldn't change one little bit about Evan...because that would change HIM. I'll take the "bad," the frustrating, the exhausting, the aggravating, the just plain weird...because of all the "good," the sweet, the curious, the funny, the loving, the SMART.
He's Evan. Evan who may be a little quirky. Evan who may need a little more time and experience before he hits his stride. But just Evan. And that's more than good enough for me.

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