Susan's Blog

Wednesday, February 17, 2010

Excerpt Three from AMSG (Autism Mom’s Survival Guide)

Chapter 3. Spending Time With Our Kids — And Enjoying It.

I’m not proud to admit this, but for the longest time I felt that the only way I could really have fun was just with my husband or with my own friends, not with my children.
I was not a sit-on-the-floor-and-play with-cars kind of mom, particularly because my firstborn only liked to line them up and look at them, with his thumb in his mouth. But even when Max and Ben came along, “pway wif me” were
words that made me feel dull and sleepy. I don’t know why; I
had a lot on my plate, I guess. Maybe I thought their expectations
were higher than they actually were. It wasn’t until I
was an older mom that I grew into my role as Fun Muse, or
at least Willing Companion….

No matter the age of your kids, there are ways to have
fun—ways that both parents and kids can enjoy. Maybe this
is obvious, but it’s important to be reminded of it and keep
it in mind during trying times. Too often we let ourselves get
dragged under by caregiving obligations, and we forget about
simple happiness. Your fun may mean choosing an ordinary,
no-fail activity, such as a trip to the playground, where you
might bring along a crossword puzzle for yourself—unless,
that is, playgrounds are particularly difficult places for your
autistic child. (For instance, my friend Sheila’s son used to take
every opportunity to scale the high fences that surrounded our
park.) Having a few moments to yourself might give you the
energy to then enjoy the next moment, when your child needs
your attention again.

Ed from Ohio says, “Sometimes we take our son to the
park and he uses all the equipment. Sometimes, he will just
walk around the tennis courts thirty times. It’s not all fun—
but it’s not all bad, either.” This may not sound like much of
a rave, but the thing is, parenting any kid is like that: not all
fun, and not all bad.

Donna is a mom from Massachusetts who has learned to
enjoy her son by seeing things from his point of view: “He
loves to jump on a trampoline, ride his bike, and slide down
those large, inflatable slides on the moonwalks that every kid
seems to have at his or her birthday party.” This past summer
her family took a trip overseas. Before the plane took off, the
flight attendant explained about emergency landings. Christopher
appeared very interested and seemed to be following
along in his own safety pamphlet. “He suddenly tugged on
my arm to get my attention to show me the illustration of the
emergency landing, and the people sliding down the inflated
emergency chute,” says Donna. “At that point, he asked, in a
perfectly worded sentence (which made me feel very proud
of his expressive-language skills), if he could ‘have a turn
down the big slide.’ My husband and I chuckled at this sincere
request, but we also made sure to keep him away from
the exit doors!” Donna and her husband were tickled by
Christopher’s way of seeing things, so different from theirs,
and thus the plane ride was a bonding experience rather than
a stressful one.

No matter how difficult it can be sometimes with children,
especially those on the spectrum, many autism parents
summon up the energy from somewhere to get their kids out
into the world.

“Our kids deserve a childhood!” Kim, my friend in Connecticut wrote to me. When I asked her what she does for
fun with them, she had a lot to say: “The kids love swimming and the house we just rented has a pool. That was an easy treat—going to the town pool was too difficult with all three,
as you can imagine.” Kim also says that her kids love amusement parks and carousels. “Shocking, isn’t it,” she says jokingly, “they love to spin!” She summed up her thoughts like this: “We try to do everything any parent does with their kids.
We might go for a shorter period of time or less frequently,
but we’ve never let autism trap us in our home.”



With our son with autism, I started "floortiming" – and it was energy intensive for sure. But I was absolutely astounded to find that it took almost no extra effort to engage him in symbolic play (feeding real grapes to a stuffed-animal pal). Sure, he did the same things over and over – and breaking patterns was tough – but well worth the hard work.


— added by Lisa Jo Rudy on Thursday, February 18, 2010 at 7:40 am

I just saw Kim an hour ago at The Pilot House and told her she was in your blog today! 🙂

— added by Cathby on Thursday, February 18, 2010 at 1:02 pm

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