August 2, 2010

Comparisons are Odious

Posted in My Take on Autism tagged , , , , , at 6:30 am by autismmommytherapist

Both of my sons have been fortunate enough to be the recipients of many hours of well-planned and well-executed Applied Behavioral Analysis, conducted in two different states, through several different agencies, by over a dozen therapists. All of these therapists had their individual talents and strengths, and knew exactly how to play to them. Several were gifted at ITT, or intensive teaching, chipping away at the deficits my oldest son possessed and replacing them with coveted skills. A few were phenomenal at working with my son in the NET, or Natural Environment Training, teaching him to generalize those skills to a new location while employing different materials. Some of them were frankly brilliant at discerning exactly what reward was required to motivate my reluctant child on any given day. One or two were experts at everything.

We were lucky enough to have one particular therapist who was talented in all aspects of ABA, with the added bonus of being a mother to an autistic child herself. In addition to helping me become a better therapist she often gave me “life tips” that were invaluable, contacts to an agency, advice on how to handle travel or a particular behavior, or sometimes just counsel on how to get through the day. She had a wonderful rapport with Justin, was one of the few teachers he would voluntarily embrace when she came to the door to work with him. She was an extraordinary practitioner, Ivy League educated (which does not always translate to practical skills, but in this case, did), savvy in the ways of wooing autistic children to work, and in general, an exemplary human being. Plus, she was funny as hell, a bonus to me as I spent many hours a week with her. By that point, I really needed a laugh.

One day, a few months into her tenure with us, she told me a story about something that had taken place years before in regards to her own child’s therapy. It seems one of the women sent to work with her son also had another client a few towns over who was exactly the same age as our therapist’s son. For whatever reason, on this particular day, this woman thought it would be appropriate to share that the child in that other town was making much more significant progress than our therapist’s child, and that said progress must be due to parental involvement. She was adamant in her belief that if Justin’s therapist tried just a little bit harder, her son would also be talking, acquiring skills faster, behaving better.

Truly, I’d like to hunt that woman down and have a chat with her.

Ironically, I’m often on the other side of this story these days with Zachary. People both inside and outside of the “autism business”, those who know that he is mildly affected, are generally stunned by his progress, his efficacy with language, his plentiful eye contact, his evocative imagination. Individuals who do not know he shares the same condition as his brother have often commented on how grateful I must be that he has been “spared”, and are shocked when I tell them this just isn’t so, that barely a year ago he was practically mute, unable to complete the most basic of skills, a wisp of his former gregarious self. In both situations I am generally praised for how far he’s come, at the choices I’ve made for him, for all the hard work I must have conducted with him. Usually I just smile, but I am incredibly uncomfortable at these declarations for two reasons. In part, I know in my soul that Zachary’s miraculous conversion is predominantly due to the fact that his brain was simply able to recover his lost skills, his desire to communicate, and his need for social interaction. I’m also in discomfort when I hear this praise because I immediately think of Justin, who has come just as far in his own way, but would never be mistaken for a neurotypical child, even on his best day.

The truth is, Justin had far more intervention than Zachary had, in part because he was diagnosed five months earlier, and in part because at the time he was my only child, and my only concern. Justin was in a thirty hour a week behavioral program before he turned eighteen months old, which is a rarity now, and was unheard of in 2004. My husband and I hired a fantastic Board Certified Behavior Consultant to train me, and we had a few therapists help out several hours a week. My mission in life was to ensure he spent every conscious moment either engaged in therapy or at the very least interacting with someone, and for the most part, I succeeded in my desires. When we moved to New Jersey we had the collective experience of employees from the Douglass Developmental Disabilities Center, one of the most well-respected agencies in the state. In short, he had both the Cadillac of interventions and an obsessed mother who spent every waking moment trying to eradicate his autism. I thought we could “save” him through sheer effort and will-power, that through our collective efforts he would reside in the land of the 10% of children who recover, or the 20% who lead some type of independent lives.

If you’ve been reading this blog at all, you know he does not live there.

I guess in the end, I have this to say. Early intervention and diagnosis are both crucial to the arc of progress a child will make. Quality and quantity of said interventions will have an enormous impact on acquisition of skills, the opportunity to develop a system of language, the desire and ability to engage in the most basic of human interactions. I’m not refuting any of this, nor in disagreement with the myriad studies that support these statements.

I am, when all is said and done, a science girl after all.

The truth is though, in the end, Zachary walks in our world because he has the ability and desire to be there. I am thrilled for him, for the opportunities he will now be afforded, the chance to make friends, integrate into a “regular classroom”, drive me insane with his constant questions and demands. I welcome it all.

But I know in my mother’s soul, he is here in large part because whatever type of autism he has allowed him these opportunities, that all the hours of working with him contributed to his defection from a pure world of autism, but are far from the only defining reason. I am just as proud of him as I am of his elder sibling, the one who has striven so hard to eradicate his aggressive urges, who struggles every day to repeat the smallest of syllables, who envelops his parents in affection and appreciation on a daily basis. In my eyes and in his own way, Justin has come just as far as his brother, on his own curve, and in his own time.

And as I think of that woman, the one who brought such unnecessary pain and self-doubt for a brief period of time into my friend’s life, I am reminded of an age-old adage, one that for once, is absolute truth.

Comparisons, indeed, are odious.

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9 Comments »

  1. misifusa said,

    Well said Kim, well said.

  2. Mom said,

    Well stated!

  3. Kathy M said,

    So true!

  4. Jina said,

    Heard this from a friend: Unhappiness formula = Comparing yourself to others.

  5. LZ said,

    I still feel very guilty about how long it took me to get moving on my son’s issues. I realized a bit late that I have too much faith in doctors, and tended to assume that they knew best (better than me, at the time, anyway). It took my sister-in-law pushing the idea that my son didn’t talk enough, and then my son falling asleep in my arms in a pool, for me to finally push (shove?) the doctor into something more than “Be patient, he’ll talk when he’s ready.”

    We got our diagnosis at 2 years, 9 months. Out here, I’ve been told that’s early, and very good. But in my heart I know I should have picked up on this sooner, fought for him earlier, and I still feel like I did him a tremendous disservice. Reading your blogs, learning about all the programs you have pursued for your boys…I often wonder, if I lived over there, would it be better for my son? Should I pack everyone up and move across country for what sound like better services? Should I go back through a study course to sit for a new licensing exam so that I can support my family over there? Should I rip my boys away from the only support network they know, out here? I’m sure I am not alone with the feelings of guilt, and the wondering if I shouldn’t/couldn’t be doing more and more for him. But the cold, heartbreaking fact is that I simply can’t…I am stretched to my limits (pick whichever limit you can think of, it would be a factor).

    Thankfully, all of our therapists have been phenomenal people, who openly love what they are doing, and support me in everything that I try to do for my son. But even though I have not had the experience, I still know that any therapist who would be so ignorant as to try to suggest that I needed to be MORE involved to make more progress would probably be promptly told that he/she was obviously in the wrong field for his/her level of understanding of what it is to be immersed in the depths of autism, and then I think I would honestly get to claim temporary insanity after I handed that therapist his/her head.

    Wouldn’t be very helpful, I am sure, but that therapist might try to gain a better understanding and perhaps rethink the approach?

    Comparisons…I agree, they are indeed odious.


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