Parents with special needs children: YOU
need to read this. I need your input to help other parents just like
us. I lost this post in the crash of Chicago Parent, but had posted a
hardcopy in my son’s OT office. Please take a moment to read and,
please, feel free to respond to the email listed here or in a comment
on the article.
Repost from 10/22/07
As the mother of a
child on the autistic spectrum, I’ve often wondered how everyone else
does it. Does every family with a child on the spectrum, or with any
other special needs get frustrated? Find moments of joy in the
smallest of triumphs? Feel the need to just break down and cry, if for
nothing more than a moment of allowing yourself to be vulnerable? Feel
the need to escape every once in a while? Do anyone else’s ears perk
up, even in the most crowded locale at the sound of someone else, clear
across the room, talking about their child, with the same issues as
yours? How about moments of guilt, anger, sadness: at yourself,
others, teachers, school districts, strangers, family members, those
who just don’t get it, government for not helping out more? Do you
find yourself getting teary-eyed when you read a little blurb about a
child with issues similar to your child’s doing something wonderful –
sharing in that parent’s joy? Do you get angry when your child’s
teachers just won’t listen and continue to label your child as a
behavioral problem when, in fact, they simply do not know how to
interact? How do YOU balance the myriad of places, finances, jobs,
therapists that are necessary, and all of the time spent dedicated only
to your child’s well-being?
What about faith? Does that play a part in how you get through? How about humor? What about the rest of your family?
What do you do to relax & release?
How
many times have you sat at the various therapies (as I am now), IEP’s
team meetings, interventions, doctor visits, and looked at the other
parents there and wondered what exactly it is that they do to keep it
together? That is exactly how these questions came to me: as my
husband and I sat in the lobby waiting for our son, SmallBoy, as he
worked with his OT (as we’re doing now). I see parents all day at my
job- some have kids with seer learning disabilities, autism, ADHD. I
see parents at our son’s behavioral therapist and occupational
therapist and I wonder, “Hmmmm – what is it that THEY do? I know they
could tell me volumes about their child and educate me inside out on
their child’s disabilities/issues, but what do THEY do for themselves?”
There
are so many stories of what our children are like, how delightful they
are and the joy they bring to our lives. There are happy stores, and
some that are so sad, others that bring hope in the wake of tragedy. I
am in the process of researching how we, the parents and family members
of these precious angels, get through the day to day. I am focused on
US as well, because it’s so important that WE can keep it together when
we need to, that we, too, have to “let it all out” from time to time.
My hope is to write an article about US that will, perhaps, help other
parents like us and, ultimately, help educate those who have just heard
the words, “Your child has _______.”
If you are interested in
sharing your story with me, please email me at tinanmike@sbcglobal.net,
and use “How WE do it,” in your subject line. No need to send me your
whole story right away, I’d love to converse with you prior.
As
a side note, after sending this same request to my family, my
mother-in-law wrote back about an experience she had wile vacationing
in Mexico:
“Hi Teen…When I was in Mexico…I was sitting around
the pool…and I was mentioning my worry about getting [SmallBoy] mini
bongo drums…because noise might be irritating…but I wanted him to feel
part of the very musical family….She (a total stranger) slid up on her
float and said…,’Why would sound be irritating?’
“…and I said, ‘My grandson has Asperger’s.’
“…and she said, ‘I have a grandson with AS.’
“Then another lady floated up and said, ‘My nephew has AS.’
“Anyway…the
fact that I said…’[SmallBoy] has AS,’others came around and bonded with
me. I think they liked that I just talked about it.
“My point
is, of course, …we come together as a group of people in our caring…and
our knowledge of AS…we realize…it is all around us, and we better do
something about it now…but that they are the dearest children on
earth….”
My husband and I TRY to have a date night where we go
out, even if only for an hour, grab a beer and let our frustrations out
playing Ms. Pac Man. We pour our emotions into our music, but
sometimes that’s just not enough. It’s hard sometimes to keep it all
“aside” until you’re out to vent. What do YOU do?
Christina Meadowcroft