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When you look at us, you might see a
perfect American family: a father, a mother, a
sister, and a brother. All of us are blessed: athletic,
healthy, and attractive.
Then you take a second look at the
brother. He’s somehow “off.” Then you look again, and
you see that “off” is a generous term-this kid is pretty
weird. He doesn’t make eye contact with any strangers
around him, has no sense of personal space, and has to
be maneuvered by his family as he goes in and out of
stores so he doesn’t collide with anyone although he is
perfectly ambulatory. Finally, those of you who “know” ,
realize this kid is autistic. As the mom in this family,
I can say that we have had some rough times: finding a
proper school for my son, then fighting to send him
there, moving from New York to Connecticut just as his
sister was accepted into a wonderful private school in
the city. Adolescence. Realizing that this child would
always have to be looked after, he could never lead an
independent life.
But somehow our family never became a
casualty of my son’s diagnosis. My husband never freaked
out when he realized his son would never be the high
achieving, All-American athlete he was. I never let my
sadness grow into a lifelong depression. My daughter
never resented her little brother and regressed into
attention- getting, destructive behavior. And none of us
allowed my son any wiggle room with regard to public or
private behavior. He always knows what is OK and what is
not. We are fortunate that he has always been attuned to
our feelings. |
As a family, we click. We go to
restaurants, weekend outings, and vacations as a family,
always with an eye on my son’s time clock and tolerance
gauge. So for example, fine dining at Le Bernardin is
out; eating at Olive Garden is in.. The Thanksgiving
Parade, the Ice Capades, and any Disney or other theme
park is out. Apple picking, hiking , zoos, and petting
farms are in. Shopping is always out unless the mall has
a place my son likes and we take him there last as a
treat for good behavior. The Westin Hotel in St. John,
USVI is our favorite “in” vacation destination because
we get our own house with a private pool, and a complete
kitchen that allows my son to microwave spaghetti-his
favorite food- to his heart’s content. We rent a car
there and spend our days on the undeveloped island’s
quiet beaches, not hanging out in the busy wharf town.
It’s all about creating our own space
for our enjoyment. And we do it without embarrassment
because he does his best in his clueless way. We could
care less about the “straights.” Actually the
“straights” - those normal people who were sleeping in
the back row when the Lord handed out intelligence,
compassion, and tolerance provide us with another
important family survival element-laughter. We don’t
laugh at my son, but sometimes the reactions he gets
from the people he unnerves can make us weak in the
knees. Once we were in a restaurant sitting next to a
“straight” woman who obviously found it personally
offensive that my son got up to check
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Finally, vocabulary, language
comprehension, and exposure to
literature should also be encouraged on
a daily basis. |
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All in all, it is about creating
complete programs for children using
augmentative communication with literacy
and true language learning in mind.
If our goal is to create independence,
we have to also design literacy and
language programs that will enhence the
lives of our clients into adult hood. |
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