As the parent of a child with a physical handicap, some days are
amazing. I feel truly blessed to share my life with this child who
has boundless strength and happiness, and I am more than thankful
that I am healthy and strong enough to help her. Other days are a
struggle from beginning to end, and the self-pity and fear are
But I am lucky enough to have a tremendously supportive circle of
friends. Some of them have special needs kids of their own and they
'get it.' Others don't share the special needs thing but are still
there with me and my family to celebrate the small achievements and
listen when I cry. Along with my amazing family, these friends are
what get me through.
I am by nature a friendly person, and I have found that by talking
to other parents, whether it is at work or when I am sitting
outside of endless hours of therapy, I have gotten the most
important information regarding my daughter. I have found out about
different therapies out there to keep things interesting
(gymnastics, swimming, hippo therapy) and about grants and
equipment I didn't know existed.
Other parents are the ones with the information, and they are
willing to share it with you if you strike up a conversation and
ask. We all have the need to connect with people like us, and if
you look around your daily life, you are surrounded by them.
Eating out is one pleasure I would not forgo when we adopted the
twins a dozen years ago. I have found that other diners do not care
to be involved in a social experiment and prefer that families with
autistic children just stay home for the next 20 years. The onus is
on us parents to make the trip successful. My tips:
The fact that Michael has a chronic illness with an
unpredictable course is stressful for Michael and the rest of the
family. We are so often transported to the emergency room that we
know many of the ER staff and the paramedics.
So we live in the good moments, put the bad ones behind us as
quickly as possible and try not to worry too much about a future we
can't control. Every night before our children go to bed, we hug
them and tell them we love them and how proud of them we are.
We resist the urge to measure either of our children against
other kids or each other but appreciate the progress they make as
individuals. We are teaching them that what is 'equitable' is not
always 'equal,' and while they may not always get the same things,
we will try to give each of them what they need.
I thought that May 21, 2009, would be one of the happiest days
of my life, but when I think about the reality, I cry. My son
Jason, 21, graduated from high school. He beamed in his bright blue
cap and gown.
My husband, family and friends beamed with happiness and were
very proud, but I cried, not from the joy of the graduation but
asking myself the question, "What is going to happen with my son
For those who cannot enter the workforce, continue on to more
education or find sheltered workshop environment with adequate
staffing, there are few options. Far too few programs and resources
are allocated for adults with autism.
Most of the national focus has been on early intervention and
treatment of people with autism. Young adults like my Jason have
fallen through the cracks.
Jason has improved throughout the years and our primary focus
right now is not a cure but a treatment for the rest of his
It becomes more challenging as our children with autism become
adults because the community has very little empathy or
As I cry for Jason, the tears of many flow throughout our
communities because there is a baby boom of Jasons aging out of
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