September 28, 2011
“I’m gonna BEAT you!” my youngest yells as he quickly surpasses me on the stairs, fast-walking because he knows he’ll catch holy hell if he runs. “I have no doubt you’re right, Zach” I reply, because he’s about a century younger than me (some days it feels that way), and because I’m exceptionally tired today. I turn slightly on the step and see my husband haul Justin over the gate we’ve put up to at least slightly hinder his frequent escapes upstairs, and receive an excited kiss from my eldest as he happily ascends. It’s Zach’s most mercurial time of day, and Justin’s best. My eldest boy loves to sleep. He is so clearly my child.
My husband hands me a pile of laundry that didn’t quite make it to the second floor, then casually says, “Hey, I forgot to tell you what Zach said at dinner last night when you were out. He was talking about the ‘Island of Sodor’, then out of the blue he just looked across the table and said ‘Justin, I’m sorry you can’t talk’, and then stuffed a chicken nugget in his mouth”. Jeff looks at my face as I clutch small socks and underwear tightly to my chest, frozen in the moment. He realizes he has greatly underestimated my anticipated reaction as I feel my face redden, and my eyes fill with tears. I can see he’s regretting having told me, and I assure him I’m glad he remembered (I’m not sure I would have retained that conversation for twenty-four hours these days), and make a valiant attempt to get it together. There are after all baths to be drawn, stories to be read, and particularly in Justin’s case, a voluminous amount of hugs to be administered.
In other words, it’s not a good time for mommy to have a moment.
I’ve written before about Zach starting to make connections as we’ve been talking more and more about autism together, what it is, what constitutes the different types, and most importantly to him, how it affects his big brother. He is definitely processing our discussions, because comments about the disorder crop up out of the blue, sometimes in a seemingly random fashion. When we’ve been out in the community, he’s occasionally asked me if little kids who weren’t talking yet had it. After assessing the toddlers’ eye contact capacity, coupled with the amount of pointing going on, I assured him they probably didn’t, were in fact just too young to speak. On another occasion, he asked if two boys getting off the school bus in front of us were brothers, and when I said they might be, he asked which one had autism. Then, of course, there was his declaration of “You have autism just like Justin!” to my friend’s son at our most recent POAC (Parents of Autistic Children) event, which in fact is true, and was thankfully met with a response of “you’re right!” from the family.
Perhaps working on when it’s okay to talk about this should be our next goal.
I know these moments are going to come up more frequently, particularly as Zach is beginning to leave those “running scripts” behind, and engage more often in real dialogue. I’m glad he’s comfortable talking about it, grateful that he feels compassion for his sibling even at the tender age of four. I’m also thankful that he doesn’t view autism as a negative, just something that at this point differentiates people from one another, those who have it from those who don’t. At this point, when asked, he’ll say “autism means you can’t talk and it’s hard to make friends”, a definition which clearly does not encompass everyone with the disorder (and really, what definition does), but is a perfectly adequate description for a pre-schooler to call his own. We will enrich and enlarge it over time, as he matures and is capable of comprehending the many layers that entail an ASD.
After all, we still need to have the “autism talk” with him too.
A pair of socks slips to the floor, and as I reach down to claim errant cotton, I ponder for a moment what I would have replied had I been home. I hope I would have complimented Zach first on his kindness, told him how sweet he was to have comforted his brother. I would have reminded him that on occasion Justin does “talk” to us with his iPad, generally to ask for food or toys, much to the delight of his younger sibling who loves to hear that slim black rectangle speak. I believe I would have shared with him that sometimes communication transcends words, as when his big brother not only permits his hugs but gently returns them, or ruffles his hair when he finds Zach’s antics particularly droll.
I hope I would have had the presence of mind to say it’s okay to be sad that Justin can’t talk, and that sometimes I’m sad about it too. I hope I would have reminded him that the important thing is we all love each other, no matter what.
My husband and I trudge upstairs together, him glancing back somewhat anxiously to take a reading on my mood, me smiling to reassure him that I am indeed alright. I’m certain Zach will bring this up again, and I make a mental note to retain my musings, as they were particularly cogent for a tired girl, and why reinvent the wheel. I breach the top step and am greeted by a boy who still hasn’t tired of playing “gotcha!”, drop Justin’s delicates to the floor, and embrace my youngest in a mighty hug. “I’m proud of you” I tell him, although he doesn’t really know why, as that moment at dinner was so “last year” for him. I am certain, as I breathe in that little boy smell no factory could ever replicate, that we’ll navigate the windy roads of comprehension together, as a family.
And for a moment, that’s all that really matters.
June 8, 2011
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.