June 8, 2011

Alphabet Soup

Posted in My Take on Autism tagged , , , , , , , at 9:01 am by autismmommytherapist

It’s Friday afternoon, and I’m trying really, really hard to suppress my irritation as I drive, and losing the battle miserably. I’m on my way to Justin’s new neurological pediatrician with husband and boy in tow, unhappy because we went to the wrong office, and now we’ll be late for our appointment. Justin had his intake at their facility in north Jersey months ago, but somehow Jeff and I both missed that this practice has two offices in the central part of our state, and now I’m cursing under my breath that I didn’t check the website more thoroughly. I look at my car clock once again, and sigh. I placate myself that getting Justin in and out of the first office, for the most part, was easy. Except for the fact that for the first time ever my eldest was scared in an elevator, which prompted him to launch his seventy-pound frame into my arms in the hopes I’d carry him out of it, we’re still okay. I’ll need a chiropractor immediately, but we will be okay.

We’ve switched clinicians in part due to that waiting room incident, but also because my husband and I have come to believe that Justin has a dual diagnosis of ASD and OCD, and we’re hoping to have fresh eyes assess the situation. The secondary diagnosis of obsessive-compulsive disorder has been largely dismissed by Justin’s practitioners in the past, all of whom have thought that his rigid adherence to ritual is simply a facet of perseveration, a central tenet of autism. His father and I think it may be something more.

Last month we were fortunate to have the BCBA from Justin’s school in our residence for a few hours to assess his “maneuvers”, the rotation of DVDs/CDs/picture frames/shoes/plush toys that consumes him, and drives us crazy. This gifted woman with decades of experience with children on the spectrum validated our concerns, agreeing with us that some of his actions were a function of the repetitive aspects of a spectrum disorder, but the duration and severity of his focus indicated something else was amiss as well. Jeff and I subsequently figured it was worth the hell of finding a new doctor, and made the calls.

We pull into the parking lot of the hospital complex a mere three minutes late, and since at our first visit this woman seemed to be the paragon of compassion, I figure she’ll let our tardiness slide. We whisk Justin into the waiting room and check him in, and my husband makes sure the receptionist has our new insurance information while I attempt to keep Justin from barging in on a surgery. Our new neuroped takes us almost immediately, which further endears her to me, and I quickly tote goody bag, boy and purse into her well-lit and child-friendly examination room. Not only is there space for the four of us to sit, but there appear to be actual “autism-interesting” toys for Justin’s perusal as well, and once again I’m grateful we put him on that long waiting list last summer. I find myself almost giddy at how simple the entire affair has gone.

As I’ve said before, it doesn’t take much these days.

At our last visit we broached our concerns about the possibility of Justin’s sporting a second disorder, so we spend a good portion of our appointment time discussing how he’s doing at school (beautifully), his behavior at home (save for the constant house reorg, wonderful), and the numerous interventions we’ve attempted. My husband and I share with her the opinion of our fabulous BCBA-for-a-day, and reiterate we’re aware of the difficulty of culling out the perseverative aspects of his behaviors from those that might be purely of a compulsive nature.

Eventually, we stop talking, and listen.

Our learned practitioner concurs with us that dual diagnosis is difficult, and perhaps at the end of the day, immaterial. She says that from what she’s heard it is probable he has both disorders, and she’s willing to state it for the record. We discuss our “plan of attack”, which begins with increasing the dosage of his current medication, then perhaps exploring others if this intervention fails to mitigate the situation. We are given time-frames and parameters for using this approach, and she throws out the names of other potential medications. Our doctor gently informs us that things might get worse for a while before they get better, if they get better. We are reminded that none of this may work because he has autism, as well as OCD. Finally, our new physician gently tells us that it may take months to see a change, if any, because finding the right SSRI for OCD is a complicated task.

Hmm. Ambiguity in a treatment plan. It seems we’ve been here before.

As Justin begins to tire of the toys he initially found so fascinating, his father and I simultaneously wrap up our little tete-a-tete with Justin’s doctor, whom I’d recommend unequivocally to anyone (and that doesn’t happen often). We gather our stuff, thank her, and as Jeff heads to the exit with our boy, I tell him I’m going to make our next appointment in person, so I don’t have to remember to place the call next week. When I finish reconfiguring the chess pieces of our summer schedule I have an appointment secured, and head rapidly back to the exit so we can attempt our return home prior to rush hour.

In the distance I see Jeff struggling a bit with Justin’s safety harness, and I heighten my pace because I know how frustrating those buckles can be, and frankly, I’m just better at it. I know I have almost an entire minute alone to process this dual designation before I’m reunited once again with my family, and, I quickly assess my emotional state (I’ve become expert at this over the years). Unbidden as I walk, the tune from the “alphabet song” enters my head. There is a slight variation on a theme this time with the words “ABCD, ASD, HIJK my son has OCD” inserting itself into my fatigue-ridden brain.

No, I’m not sure where that came from.

I continue on to the car, and realize I’ve suspected this outcome for years, am far more interested in whether or not this knowledge can help alleviate some of his more troubling symptoms than whether or not he has a second “label”. So many recent studies seem to suggest that a variety of disorders comprise one big happy family, with ASD, OCD, ADD and others perhaps fighting for purchase on one or two chromosomes. Perhaps we’ll add more letters to his “alphabet soup” along the way, perhaps not. At the end of the day, what he has is irrelevant to who he is, and how much he’s loved.

And as I leave the parking lot after a brief skirmish with my spouse over which direction to turn (he was right, I know, it’s shocking), I remind myself that on the bad days, and yes, there still are bad days, that this absolute truth is what I need to remember most.

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10 Comments »

  1. Robyn said,

    Always love reading your posts. XO

  2. Mom said,

    I know its so frustrating, but as always, you daughter manage to put a spin on it that evolves around Justin and what impact it has on him. He is one lucky boy to have a mother like you. You always balance your head and your heart and move forward to what is best at this moment in time. What a gift you are to him. Love, Mom

  3. Misifusa said,

    Justin is blessed to have such an incredible Mom like you…and you are blessed to have such an amazing son who continues to love and be loved. You make me cry with your honesty, your openness, your strength, perserverence and your love.

  4. Kathy said,

    Wow, Kim. You are dealing with so much. I hope the new meds do all that you wish them to.

  5. Jacquelin Jara said,

    So I’m doing an educational project at school about heroic people with stories related to medical, and I was hoping if yoiumdon’t mind if I can use this story along with some of the pictures. This is for ECTA (magnet high school in Las Vegas). Please write back ASAP. Thank you and he’s so blessed and lucky to have a mother like you:)


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