Wednesday, March 29, 2006

Approaching acceptance...

The contrast between Estee's recent posts "Awakenings" & "Open Arms" at Joy of Autism ( & Mom to Mr. Handsome's "Face in the Crowd" post at Autism: Ready, Set, Go! ( has got me thinking about my own journey to acceptance of my child & who he is. I resonate to the sadness of those parents who are still reeling from their child's diagnosis, their fears, their worlds being turned upside-down... but from rather a different perspective. I was fortunate to have been reminiscing recently with a long-time friend (& 1/2 of the couple that would be B's legal guardians if anything happened to C & I) about what things were like when B was in the process of receiving his diagnoses. Her memory is that C & I were in shock for a while- kind of going through the motions while focusing on the enormous amount we had to learn & do to get B in "the system" (for special ed. services at school, therapies, etc). This comment brought be vivdily back to that summer when "the dominoes began to fall" (see my "History pt. 4" post for the details). What I think put us the most in shock was not B's diagnoses per se, but the readjustment of our expectations (this kid was going to need more than the usual kindergartener, for sure) combined with the huge amount of info we had to assimilate in order to best advocate for him. I remember taking B for his first evaluation, with an OT, & how I fought not to shut-down when she estimated that my 5-year old was functioning at the physical level of a 2 1/2-year-old. Because I had been trained as a PT aide, I understood exactly what she was saying, & I knew the news was not good... The shock intensified as B continued to be evaluated & was found to be severely developmentally delayed... When they finally got around to doing the psychological & academic evals. things got less desperate- B tested as very bright & verbally way above his peers, although he was not able to recognise visual cues like letters or shapes (which led to our discovery of his severe visual/perceptual difficulties). Navigating the labyrinthine school system was daunting, but it was essential to getting him the help he needed, so we learned. It was essential. I sometimes think of this as the beginning of our time as "parents exponential", since B's needs have expanded as he's gotten older, rather than, as I observe in other families we know, his gaining increasing independance.

When I think about being in shock that summer, it feels very much like a mix of "things are not going to be the way we imagined for our kid" & being overwhelmed by the learning & growing being required of us... When we finally got to B's first CSE (Committee on Special Education) that would determine whether or not he was eligible for services for his developmental delays, there was no question that he was eligible- but at this point not one word had been said about Aspergers or autism... that diagnosis didn't come for another year, so we had a great deal of time to get used to B being "different" before tweaking our adjustment to include his AS diagnosis. In fact, by the time he got the diagnosis, C & I had done so much research that we already comfortable with this "label" for our kid. It fit him perfectly, actually, in all it's & his quirky glory.

So, why were we so comfortable with our child's AS diagnosis? Are we freaks, bad parents, outcastes of society? Why wasn't this the end of the world for us? We could see how painful it was for B to interact with peers, dealt with his melt-downs from sensory overload, had to work like mad to find the proper school environment so that he could get the education he needed &, even more important, have his emotional needs met. What was "wrong" with us that we didn't choose to fight B's diagnosis/disorder?

Of course, there's no one factor that brought us to our perspective on B. Probably first & foremost, we have always chosen to work "with" B rather than "against" him, whether it be choosing not to "Ferberise" him as a colicky infant but to night-parent him instead, or finding ways to gently intervene with self-injurious perseverative behaviours (& not intervening with the ones that aren't- choose your battles, we always say :). Another factor is that we had friends raising a son with AS, before it was in the DSM-IV & school services were available, & had seen their son grow & blossom in their care into the lovely young man he is today (now a good friend in his own right & mentor to B). I think another factor was a combination of being "older" parents who were already bucking the system by having their first child when most of their friends/peers had kids in high school & college. This also made B that much more precious to us, that he was our "one & only" shot at parenthood. Perhaps another important aspect of our coming to acceptance of B's autism is that we are not fully engaged with popular culture. We do not have cable tv, do not get the daily paper, we avoid the mega-expensive "toys" that some of our friends take for granted. We try to consciously distinguish between what we "need" & what we "want". We are as active as possible in social justice organisations & are active in our church community as a way of reaching out to the world at large. So we have a somewhat "alternative" lifestyle to begin with... An additional factor for me was not only having spent most of my teen years working with (& adoring them in every way) developmentally disabled children, which made me acutely aware of the family dysfunction that can arise when a family is faced with a disabled child, but also spent time in a wheelchair myself from the ages of 18-25 (see my "History pt. 1" post for more info) & was fully involved in the disabled rights movement back in the late 70's & early 80's. So it wasn't much of a stretch to see my own child's differently-abledness as not something to mourn but something to understand.

I think one of the hardest decisions a parent must make, when faced with how much intervention to provide their child- with any sort of "disability"- is what is enough. I was challenged to think about this when reading blogs of other parents & of all the far-flung destinations travelled for remediation, all of the medical & behavioural interventions tried... I asked C one evening why we hadn't gone to such lengths to find help for B. We talked about the assistance we've gotten so far & how pleased we are with the "village" supporting us... but I think that it goes deeper that that. Ii think that we were never driven to expreme measures to remediate our son because we have always been able to see him in the midst of diagnoses, therapy sessions, even meltdowns. And, essentially, he is fine. His quality of life is enhanced greatly by the things he's learned in PT & OT, speech & vision therapy & to imagine that accepting one's child means "doing nothing" is pure rot (I'm sorry, I read this comment on another blog & it pushed my buttons big-time :). But B is still B... Accepting him for who he is, embracing his neurological differentness, loving my child because is has AS seems very natural to me. To abhor the "magic pill" that would "cure" him also feels natural- I would never mess with my kid's essential nature. That would be disrespect to the worst possible degree. And part of how we show respect to B is to educate him about his diagnoses. He can explain AS, Tourettes, & OCD to anyone who asks, & has interesting insights as to how they affect his life. Perhaps it is because we have pulled-back from popular culture & don't subscribe to society's standards for perfection (& actively try to subvert them when we can :) that we can say that, for example, whether or not he easily interacts with others is less important to us than whether or not he is happy. In other words, while we encourage him to be social & expect him to be at least polite to others, we do not push him. We follow his lead. Interestingly, he is doing beautifully with his social interactions at school these days. His speech therapist has been delighted by the ease of his interactions (part of her therapy time with him is "push-in" to help him with socialisation). He's really excited about his birthday party this weekend & thinks a lot about what activities would be fun for the kids who'll be there. The main times he has trouble is when the OCD kicks-in... & the fact of our lives is that that's B's biggest "handicap" these days. Not AS, not Tourettes, but OCD. Perhaps it's because I see the negative effect of the OCD on B's life that I can look at autism through much rosier glasses. Life was much easier for him & us when he was "just" autistic... but the fact is that OCD can be part of the spectrum as well, & we are working very hard with him to help him reclaim his pre-OCD life. It will take time- but we have faith.

So, this is how we have come to a sense of acceptance of B's autism. It doesn't happen overnight, nor does it happen without deep examination of our expecatations of life, our lifestyles, & ourselves. But I believe it is the most respectful way that we can regard our children. Perhaps the best healing from the shock of having autism enter our lives is to find the essence of our child & love that essence, whatever life may bring.


At 8:44 PM, Blogger Mom to Mr. Handsome said...

Hi Lisa,

You wrote so wonderfully about how your family has looked at "B"'s ASD as being a part of him. I admire the thought process that you put into finding successful strategies that help "B" reach some of his developmental goals. It sounds like he is doing really well.

I wanted to clarify, briefly, that I also accept Gabe for the wonderful person he is. Having ASD is not entirely who Gabe is. It is such a small part of the beauty that is Gabe. That small part, however, includes gagging, sometimes vomitting, when eating, Central Processing Disorder, inabiltiy to communicate pain or sickness, an intense need for order and possible OCD. Those are the things that make ASD for us hard to embrace as "just a part of Gabe". I hope that down the road our family will come to be able to find our own successful strategies when working with Gabe's ASD.

Take care,

At 12:02 PM, Blogger Lisa/Jedi said...

Thanks, Kristin. Yes, it really does take time to adjust, and then things change- our kids grow, their behaviours/symptoms/attitudes change- I often wish I were better at recognising & appreciating the times when our family is happy & in synch with life. Working on it... And so much of my attitude & ability to cope depend on what's going on, internally, with me, too. When I'm feeling out of balance it's keeping the essence of things in mind that helps bring me back. Thanks for sharing your journey!

At 11:37 PM, Blogger Zilari said...

Lisa/Jedi -- as usual, I find myself impressed by the Jedi-esque rationality of your post. As someone on the "inside" of the acceptance / treatment issue (which I think is mainly a semantic argument as opposed to a true argument) it is often quite difficult for me to choose my words.

I have been involved in thinking about, and learning about, atypical neurology for quite a while now but only in the past few months have I decided to create a public blog about my opinions, experiences, and perspectives.

Before doing this, I read a lot. I read parent blogs, articles by fellow autistic persons, articles by psychologists and therapists and specialists. I talked to my own therapists. I talked to my parents. It would have been easy to stay on the sidelines, where I was before...quietly living my own life (in which self-acceptance coupled with constant self-improvement plays a huge part) without risking conflict.

But it struck me, in around January, that these things were all too important to stay silent about. I figured that if anything I wrote could even help one person understand their child even a little bit better, then it was worth risking my safe-and-quiet "web existence". I don't consider myself an extremist...I don't even consider myself an "activist", really, though some might argue that just stating opinions in a public blog makes me one.

Hence, I respect other people who choose to speak their mind online, to have dialogue like this, especially when something as precious as people's brains (and therefore, their lives, their very existence) hangs in the balance. I may not always agree with everything everyone says. I may end up alienating a few people by saying things that are just too painful, just as I sometimes read things that have such a powerful effect on me that I'm unable to sleep. It feels like the right thing to do, though -- this sort of communication. Keep up what you are doing. I love hearing about B's progress and his Pokemon characters. :)

At 4:24 PM, Blogger Lisa/Jedi said...

Hey, Zilari,

I think it's so cool that we started blogging just about the same time, & it would appear, for similar reasons- to share our perceptions & our journeys. I sometimes feel very muddled about posting my gut feelings, knowing that they might be offensive or even hurtful- there is so much dissention these days concerning autism & the surrounding issues such as meds & attutudes. I'm trying very hard to put on the table what we're finding that works for B & us, with as little value-judgement attached as possible (except for the value that these have for us personally).

Reading what you write- about your perceptions & your experiences- has become an invaluable part of how I approach B & his life with autism. Again, many thanks!!


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