stumbling

stumbling

Monday, May 12, 2014

Being nice really isn’t enough



“Did you have any other questions about Naomi’s behavior?”  The young woman asks me. 
“Nope, not really,”  I answer.  We sit there in a moment of empty silence.   The young woman, Samantha, is my counselor.   Of course, I have tones of questions about my daughter’s behavior.  I have no questions that she can answer or offer any insight into.  I figured this out soon after meeting her.   She is a nice person.  She’s 20-something with long, black hair.   She has the letters after her name that qualify her to bill insurance.  With regard to autism, I’m guessing she’s had a few intensive courses, read a few books, looked at a few websites, taken part in some on- the- job training and voila!  She’s an autism counselor!
When Naomi’s therapy center told me that they offered counseling for parents that was covered by insurance, and encouraged me to try it, I thought “Why not? ”   But I learned there are  plenty of reasons.
It’s not Samantha’s fault.  As I said, she is a nice person and she’s trying hard.  She went through years of education to get to where she is now and she’s filling an open position for this job.  Still, I can’t help but feel mildly insulted at the suggestion that this girl young woman is going to give me advice.  She has likely spent the last 6 years studying various things like sociology, math and women’s studies.  When she wasn’t into her studies I imagine she was taking part time jobs, plugging into social media and pursuing a social life.  That’s what college students do.  I, on the other hand, have been doing what full time autism moms do for the past six years: Sleep deprivation, DAN! Doctors, ABA seminars, RDI, PECS, CCDT, Play Project,  AIM, special diets, IEP meetings, support groups and full time responsibility for one beautiful but very high maintenance little girl.  No, I didn’t get letters after my name for it, but does it make any sense that Samantha should be giving me advice?  Does it make sense that when she offers me another information packet from Autism Speaks I have the urge to crumple it up and throw it at her head?   Can anyone understand that when Samantha offers me some insights my first impulse is to say “You honestly think that never occurred to me at some point over the past 6 years?  You think I’ve been waiting all this time to hear this overwhelmingly obvious observation from you?”   Of course, I don’t say that.  That would insult her and help neither of us.  As I’m saying (for the 3rd time now) Samantha is very nice.
The advice that she offers is so common it’s almost become cliché.  “Take care of yourself” and “Get out more”, as if these ideas have never occurred to me.  When I ask about time, money, respite care, sleep and how the hell the laundry gets done she has no answers or she generously offers up my husband’s time – as if he had any –as if this also isn’t something I would have thought of.
 It’s a part of something fairly common that autism parents experience.  The assumption is that after years of intensively living this experience that we know nothing.  People watch an episode of Oprah or Dr. Phil and generously share their newly acquired autism wisdom with us.  Others offer their ‘help’ in sharing what they have learned after a distant relative was diagnosed with autism.     They give us some anecdotes about a treatment that is getting rave reviews without any awareness that it’s pretty unlikely that we haven’t heard of it or  perhaps we have even already tried it.  Finally, they offer inspiration by telling us the story about the boy that graduated from university at 16 and has autism.  We don’t have the heart to tell them that the story doesn’t make us feel better.   They just don’t get it; Although they too, are usually very nice.
Samantha does have one thing that most friends and professionals don’t.  She is a good listener.  So once a week I go in and vent my frustrations knowing that she’s not going to be able to offer me much to do about them.  I think with time, she will be a good counselor.  She may even be a good counselor for those that are new to this game.   She is starting to ‘get it’, but she doesn’t really know what to do about it.  So far, offering another Autism Speaks packet is the best she can do.    She’s at a training stage, and with time as scarce as it is, I don’t want to keep offering up my time so she can learn while billing my insurance… But Samantha really is very nice.
It will be awkward for me to stop the sessions with Samantha since she works at Naomi’s therapy center.  Awkward or not, I’ll go ahead and make the break.  All in all, that’s not a big deal. Still, I can’t help but wonder: What if another parent has a bigger problem?  A lot of autism parents have extremely complex and serious issues to be dealt with, and seeing a counselor may their last Hail Mary.   There could be serious consequences if all that the counselor can do is listen, nod and offer a packet from Autism Speaks.  Think Alex Spourdalakis, Sky Walker or Kelli Stapleton.  Those are the cases that an autism counselor really needs to be ready to deal with and Samantha is not.  Although therapy centers and clinics are not likely to be open to my advice, this is what I would say to them before they start to offer autism counseling to parents.  Assume the parents you work with are well informed, make sure your counselors understand the serious nature of the issues that they may be confronting and make sure they have significant experience working with children with autism before they start telling parents what to do.  Good intentions and being nice just won’t be enough. 

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