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How raising a child with ASD (autistic spectrum disorder)
has changed my Life
By Michelle Evans
Brian has completely changed my life. He
has taught me so much -- I owe so much to Brian for who I have become as a
person.
When Brian was little -- I was such a basket case. He was so difficult and I
had an older son and a newborn. My mom passed away and DH had just started
graduate school and I was so lost and alone. I never thought I was going to
get through an hour with Brian -- 5 minutes seemed like years dealing with
him.
It was a rough adjustment for all of us -- but being the MOM - I was the one
who took the brunt of his temper and frustration because he wasn't speaking.
The biting was the worst -- I had bite marks all over my hands and arms and
going anywhere with him and the kids was a nightmare. I was constantly in
tears. Somehow I got through those young years. Somebody was holding my hand
and leading me to my future. HE still is.
As he got older, and I got some help in the house -- things got a bit
easier. Still, explaining to everyone why he acted the way he did was hard
-- the stares, the comments and even the family telling me it was a result
of bad parenting made me so depressed -- partially because I believed them.
Now I know better.
I started surrounding myself with only families that had children with
autism. They understood and had similar issues. Going to the BBB Message
Board helped me tremendously with my shyness -- I found out that I could
write all my feelings down and people responded (who I now consider my
family).
I was always shy -- Painfully shy and unsure of myself. As Brian started to
improve, I also started to improve my personality.
I developed a wicked sense of humor, which also helped and started meeting
more and more people with children in similar situations. I also realized
that it is ok to need a break and to ask for help.
Since we started SPARC I have continued the learning experience -- once
again if Brian hadn't been who he is -- I probably would never be who I am
today.
3 months ago I took another challenge and spoke to my first audience. This
was a big moment for me -- I stood up in front of 17 people and talked about
Brian at our first SPARC meeting. (I was the one who never could talk to a
group of people - " I would get frozen and all stiff and clam up. I was that
shy) the second meeting I spoke at was easier. Still nerve wracking, but
easier then the first time.
Now I am talking to groups of people and I am still nervous but I am doing
it. And I am using the advice I give to Brian -- its ok to be scared and its
ok to make mistakes, that's how you learn -- but if you don't try - you will
never know if you will succeed in something. It is easier to give the advice
then use it on myself but I am trying.
I am Co-chairing the Breast Wellness Tea for R's (DH) Hospital in front of
400 women. That has me a bit nervous -- but I am doing it. Six months ago I
would never have done anything like that.
I just keep it in the back of my head that Brian keeps surprising us --
improving every day and that I need to keep trying to improve every day as a
person too. He is my driving Force.
I believe that life is a road that has been pre-planned for me and that I am
going down this road -- not knowing what is next -- but knowing that it is
full of twists and turns.
Today, Brian is a different person then he was 7 years ago. So am I. He has
taught me so much. And together we are still learning.
He has taught me to be more patient, to look and observe situations before I
react and he has conquered so many of his fears so I take my cues from him
now. He has shown me that he can overcome his fears -- so I should try to
conquer mine.
Taking this job with United Cerebral Palsy was the next turn in the road in
my life. I never would have done it if it weren't for him. I told him that
too. I told him that I am so proud of all he has accomplished and all his
fears that he has overcome. He smiled his impish smile at me when I told him
I was so proud of him and that I was taking this job because if he could
over come all his fears -- then I should take a chance and overcome my own
fears. He liked that.
I have learned and continue to learn that I need to think outside the box.
Brian has helped me realize that all people have issues. The person who
never smiles and seems to be always in a bad mood or with an attitude has a
reason -- whatever the reason -- I have learned to try not to judge others
because who knows what their life is like and who knows what is really going
on in their heads? Everyone has issues -- and that's OK and it's my job is
to get behind the issues and get to know the real person.
I have learned that over the years, but last night after the party it became
crystal clear for me. We had a party with all children with disabilities and
I had the chance to meet people that I had never met before. It was
unbelievable -- 70 people in my house and every one of them were so
wonderful -- even though it rained and we were all stuck inside the house --
we had a GREAT time.
What if one day Brian or any of my other children become the person that is
sad or grumpy or is in a black mood??? How would I want others to treat
him???
That's what I tell myself with everyone I meet. And that's how I am trying
to treat all people. Show respect (especially to the ones who don't
necessarily look like they deserve it) and you will be surprised that what
you see on the outside isn't necessarily what is on the inside. You just
need to get past the outside -- to see in.
And once again -- it all goes back to Brian.
Yes, we have struggled, and yes I have been driven to tears countless times
but he has turned out to be my hero and my guiding light.
Who knows where the next part of my road will lead -- but with every day
that passes by I have become a stronger, more compassionate, patient person
and wherever the road leads, I will follow -- taking my cues from him.
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MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR GENERAL INFORMATION
PURPOSES ONLY AND IS NOT TO BE CONSTRUED AS REFLECTING THE KNOWLEDGE OR OPINIONS
OF THE PUBLISHER, AND IS NOT TO BE CONSTRUED OR INTENDED AS PROVIDING MEDICAL OR
LEGAL ADVICE. THE DECISION WHETHER OR NOT TO VACCINATE IS AN IMPORTANT AND
COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU ALONE, IN CONSULTATION WITH
YOUR HEALTH CARE PROVIDER.
"A foolish faith in authority is the worst enemy of truth."
-- Albert Einstein, letter to a friend, 1901
"I know of no safe depository of the ultimate powers of the society but the people themselves, and if we think them not enlightened enough to exercise control with a wholesome discretion, the remedy is not to take it from them, but to inform their discretion by education."
-- Thomas Jefferson, letter to William C. Jarvis, September 28, 1820
"What's the point of vaccination if it doesn't protect you from the unvaccinated?"
-- Sandy Gottstein
"Who gets to decide what the greater good is and how many will be sacrificed to it?"
