“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.
No comments:
Post a Comment