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Never, Almost Never, Sometimes, Always

6/26/2014

1 Comment

 
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As I sat in the waiting room of the doctor's office, filling out the arduous, yet necessary paperwork that the lovely doctor and her cheery receptionist handed me, I felt the pen getting sweaty from my clammy hands. The sweet receptionist, with a big, happy smile asked if there was anything else I needed as I stuffed the third, ok fine, the fifth Mini Snickers (I have calculated that 10 Mini Snickers equals one regular sized Snickers so please don't correct me if I'm wrong, unless you think it's 11) into my anxious face. I smiled back, "No, I'm just fine". Obviously she couldn't see my trembling lip hidden under a glaze of chocolate.

No, this was not my annual gynecological exam where I worry as I time the doctor's exam for fear that any longer than usual probing may indicate a discovery of some silent growing tumor. And no, I was not sitting in a pink robe following my mammogram waiting for the dear Radiologic Technician (aka, the lady who squishes you in a way you didn't know you could be squished...aka Mammogram Lady) to walk back in the room with a smile she has practiced hundreds of times in her bathroom mirror, and proclaims, "We just need a few more pictures" as I stand up shaking so hard I forget to hold my robe closed (yeah, that happened). This was a very benign, very easy appointment, until in my head, it wasn't.

PicturePearson Clinical Assessment
I was not sitting in an anxiety room, I mean waiting room, anxiously awaiting the results of some critical medical test. This was a pediatric neuropsychologist's office where my beautiful boy was upstairs participating in a neurodevelopmental evaluation while I sat downstairs filling out parent questionnaires and parent rating scales that AWEnestly, sometimes are as nerve wracking as the Mammogram Lady's fake, cheery smile. I have completed these forms so many times that the sight of those vague, ambiguous rating scales make me feel nauseous...Sometimes....Almost Always....Always.

It has been years since Ryan has had any formal evaluations other than speech and language. After a roaringly successful year, it may seem odd that I would chose now to have Ryan "looked at again". This assessment was not about a diagnosis, there is no need for that because even though Denial still shows up on my back porch to share a bottle of wine, to quote the doctor who quoted another parent sitting in the anxiety room, I mean waiting room, "if it looks like a duck, talks like a duck, and walks like a duck, chances are, it's a duck". This evaluation was not to confirm or deny Ryan's ASD Diagnosis, this was more about seeing how autism impacts Ryan's learning. And just like that first evaluation all those years ago when we heard The A Word, parent input is part of the process.

I remember the first parent questionnaire I had to complete back when the folks from Early Intervention stopped by to help Ryan catch up in areas where he was delayed. Ryan's speech and his fine motor skills weren't on par with other kids his age, so, a little Occupational Therapy was ordered. It's hard to learn how to cut paper using scissors properly when your sensory system makes the touch of the plastic between your fingers feel like shards of glass. Before the therapists got started on helping Ryan, Dan and I had to fill out the Parent Questionnaire. 

These questionnaires, or rating scales, asked questions like, "Does he transition easily from one activity to the next?" and "Does he initiate play with other peer age children?" and "Does he look at you when you call his name?". It didn't take a board certified psychologist to know what the answers to such questions may mean for my son. I distinctly remember the pen shaking in my hand as I worried, analyzed, and obsessed over every one of my responses.
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It didn't matter that I already knew Ryan's struggles and differences were indeed "a duck". I still get completely freaked out every time I complete one of these forms for various therapists, psychologists and medical doctors, that my choice of circles or numbers falling under ambiguous categories such as Never, Almost Never, Sometimes, Almost Always, and Always, that my child's future is in part based on which circle I color in. I have always colored outside the lines, and with these questionnaires, it was no different, but, the ambiguity of the answers compiled with my near hysteria made the lines I was to color in, very, very blurry.

My hand would shakily hover over Almost Always, but, my heart would be screaming, Sometimes. Sometimes felt safe, after all, Sometimes fell right in the middle and being in the middle was good, right? Not too extreme right or left, therefore, my poorly drawn or colored in circle would not sway the experts one way or the other.

As always back in those days, Denial was sitting next to me helping me complete the questionnaire. "If you answer Almost Always, Ryan will most certainly get The A Word", Denial whispered in my ear. Yet, even with Denial's persuasion, I worried that a Sometimes or Never would prevent Ryan from getting the services he needed to help make life a little less loud and scary for him. Even if I chose to ignore Denial, which I rarely did, how in the world was I suppose to know the difference between Almost Always and Sometimes? I didn't keep a data log counting all the things Ryan did or didn't do, and AWEnestly, with Denial by my side, when I would see something that didn't look quite right with Ryan, I Almost Always looked the other way rather than facing it head on. Then later, I would Very Often feel guilty.

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Completing these questionnaires would get even more complicated when Dan was asked to complete one. Wow. For someone who is very logical and literal (Apple. Tree.), answers like, Not True at All, Pretty Much True, Just a Little True, and Very Much True almost made Dan's head explode. Between my fear of what our answers would mean to Ryan's future and Dan's need to quantify Just a Little True with hardcore statistics and ratios, if the doctors saw us completing these forms, I feel certain under the category "People who Need Evaluated and Medicated", the doctor would have picked Very Much True.

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Even if Dan had been given his ratios and statistics, and even if we had compiled data on all of Ryan's behavior, I would have still worried that the circle I colored in, the box I checked, or the number I circled would dictate Ryan's future. Man, that is a lot of pressure on a neurotic, overprotective mama bear. In my mind I understand that these questionnaires or rating scales are one piece of Ryan's puzzle that help point the doctors to the right diagnosis, the right therapies, the right services, the right support and the right accommodations, but, sometimes my brain has a hard time convincing my fearful heart that my innate need to protect Ryan could lead me to pick the wrong circle/box/number.

As I sat in that anxiety room, shoot, I mean waiting room, with Snickers smudged on my face and chocolate sticking to the office pen (sorry Doc) that was still trembling in my hand, somewhere deep in the recesses of my twisted brain, I was able to push past the fear, push past the "what if's" and I was able to recognize that circling Just a Little True instead of Pretty Much True is not the tell all answer for Ryan's future. I know that there is no answer that I can circle, that Dan can analyze, or that a doctor can score, that could have ever predicted how far Ryan has come or how far he will go. 

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So, as the doctor called me into her office, I wiped the chocolate off my trembling lip, handed over the questionnaire and desperately tried to shake off the PTSD effects I was still suffering from due to walking into that other doctor's office all those years ago with Denial by my side. I smile at the doctor and her co-worker with Snickers between my teeth and I remind myself that whatever this delightful doctor and her colleague discovered, whatever ways they believe autism is impacting Ryan's learning, I know that like so many things in the past, Ryan and I will take it on together.

Once upon a time I would have been horrified that Ryan greeted this wonderful neuropsychologist and her staff in his best British accent, but, now I just laugh and assure them he was not raised in London, but, his favorite Minecraft Youtuber was. Ryan has grown by leaps and bounds since the first time we heard The A Word and so have I. Even though some days it's harder than others, I Almost Always accept Ryan's autism and embrace his differences. And even though Sometimes I lose my patience, my temper and my mind, I Never forget how far we both have come and no matter what the future holds, Ryan knows, I will Always be his biggest advocate, his biggest supporter and his biggest fan. That my friends, regardless of a circle, a box or a number, will Always be Very Much True.

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Well, we all know where his love of chocolate comes from.
1 Comment
Julie S link
6/26/2014 07:10:18 am

Oh man, I can relate! I especially liked the bit about your husband doing charts. My hubby is always telling me that I should keep a log of everything we have ever tried with the boyz. Huh? Even if I could recreate that what does it matter? What didn't work at age 3 might work great when they are 13! Hubby is an engineer so again ... apple. tree.

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