I Didn’t Want a Label…until I Needed It. 1

pig ear with label

When our son’s therapist changed his initial suspicions from Asperger’s to “just anxiety” I felt relieved…at first. I understood Anxiety and felt like it was something we could deal with, fix it, and get on living a happy family life together. I told our therapist we weren’t looking for a label yet, we wanted to focus on how to help him with his behavior first.

In our counseling sessions that year (his second grade year), we focused on developing “emotional management” skills for him and us, as his parents. Our therapist illustrated a “window” as a sort of analogy of how we all handle emotions.

When we are calm and collected, we are inside of our window. But when the emotional intensity starts rising, the window slowly opens and eventually it can get to the point that the window opens completely and our emotions are now “outside of the window”. At that point, the logical, thinking part of the brain turns off and the smaller, fight-or-flight part turns on. (I felt like he was talking as much about me as out son.)

Our first goal was to keep him “inside the window”, especially when his emotional intensity started escalating and the window crept open. We also worked on techniques to get him – and me – back inside the window when the poop hit the fan and all hell broke loose. After a few sessions, he developed a slightly better handle on understanding what his emotions are but still needed work on knowing what to do with his emotions and how to properly react with them without hurting others or himself.

For a while, all our new tricks “worked” until one day they just didn’t anymore.

When things went his way, he was great. In fact, I should really stop here and state that when he wasn’t “outside his window” he acted so kind and sweet and funny.  I’m only focusing on the hard side of life during those days but it wasn’t all terrible.

The horrendously awful bad times eclipsed those good moments so much it was hard to see the good through the dense fog. When he felt bored or had to do any type of work which carried no benefit or interest for him, a switch flipped and so did he. He became like a scared bird in a cage, flapping around everywhere not sure what to do or how to handle it all. I felt like flying away too.

Dear God, make me a bird. So I could fly far. Far,  far away from here. (I feel you, Jenny!)

I walked on egg shells with him just hoping to God that no one said or did anything that might flip his switch the wrong way. It was like having an 8-year-old toddler – but bigger and smarter.

As hard as this all was, I still kept so much in. I hated the bad moments but struggled to accurately describe why things were so hard without sounding like a big huge whiner. I wanted help but I didn’t want others to know this side of him. Even though I wished I wasn’t alone, I still wanted to preserve other’s view of him as a kind and sweet boy. Since he always showed his quieter side in public, I felt embarrassed, I guess, or afraid others wouldn’t believe me.

I didn’t get him. It pained me to not understand my own child.

Again, my mind reverted to the doubts and questions from the previous year. Again, I felt like there was something more than “just anxiety” going on here.  I don’t know if I was naïve or stubborn (or both) but I lived in a fuzzy back-and-forth of wanting him to “have something” and wanting him to “grow out of it” already. A big part of me didn’t want a “label” for him – I’m kind of anti-labels – but then I wondered if it would be easier and help me explain his behavior to others…and myself if he did have one.

I wished I could peer into his mind, and look for a label in there somewhere marked “Normal with a grumpy disposition?” or “Aspergers” or “ADHD” or “IHNO” – I Have No Clue.

Finally, I decided I wanted – needed – to know: Is he just “quirky” or is there a real “problem, and does this problem have a name – more importantly – does it need a name?

“For each difficulty, there is a gradient of severity. We need to separate whether it is a ‘problem’ (i.e. significantly impacts the quality of a child’s life and merits significant intervention) or a ‘quirk’ (i.e. an unusual feature causing less impairment.”  (Kids in the Syndrome Mix)

I still felt so confused and anxious about all this. I realized I was either in denial or crazy. But then I stepped back from the situation and pointed this out to myself (yup, the crazy mom talking to herself)

If these behaviors were merely “quirks”, why has it “impacted the quality of his life and our family’s so drastically?

Another friend prodded me to admit I didn’t worry about the other kids the same way and – though they were no saints – their behaviors didn’t impact our lives enough that we succumbed to outside help.

I was waiting for him to “grow out of it” but, as he started third grade and turned nine, I knew it was time, time to look for better answers, and hopefully better solutions….

{Remember, as I share about our journey with our son and autism, I’ll share where I was, where I am now, and where I hope to be.}

(See all posts about our son and autism here)

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