As you know, I do not edit guest posts for content. This is so the voice of the author comes across, and the piece remains their own. I am so flattered, and honored that Tracy asked me to help her out by posting this. I know you'll love her as much as I do. And, if this piece really speaks to you, and you'd like to connect with Tracy on twitter, follow the link in her bio at the end of her post.
---------------------------
Recently
I read a post that I have not been able to stop thinking about since.
It was written by Jill over at Yeah. Good Times, and you can read it here. I read it once and was really moved. I felt her pain. A little later
I read it again, this time out loud and to my husband. When I said
the words out loud, they resonated a little deeper and I started to
choke up as I read them. After I finished I looked at him, and we
both had tears in our eyes. It was a brilliant analogy to how Autism
can make you feel as a parent. As with other moms who have children
with Autism, I worry. A lot. My son is only 4 and I worry about him
getting bullied in high school. Right now I can protect him, but that
won’t last forever. Jill’s words made me feel sad, and made me
think a lot about what my responsibility is as an Autism parent.
I
read a lot of negative stuff on Twitter and in different blogs that
talk about how much they hate Autism and even how resentful they are
at their children sometimes for how they affect their life. I have
read a couple of rants where parents are basically telling all their
friends and family off because they couldn’t possibly understand
how hard their life is. I can’t comprehend that. When Autism is
kicking my butt, I go to my online friends. The moms and dad there
are the ones who know exactly what I’m saying. They live it too.
They know what to say and what not to say, and it provides comfort
knowing they truly know what I’m going through. However, I would
never demoralize my family and friends by telling them they just
don’t get it. The truth is, they probably don’t get it. They
don’t understand all the nuances of Autism, but they are there if I
need something and more importantly, they love and support my son. I
also refuse to endlessly talk about how much Autism sucks. Don’t
get me wrong, I’m not saying I’m happy that my son has Autism. It
has been a challenging road and it will always be difficult. However,
I also don’t spend time wondering how he would be if he didn’t
have Autism. Where is that going to get me? That is a question that
can never be answered, so why waste a single moment thinking about
it? I prefer to spend my energy trying to do all I can to help my
son. So I read, I make phone calls, I research, I ask questions, I
ask more questions, and I get stuff done. As my son was getting
prepared to start ABA therapy a couple of weeks ago (after months of
classes, phone calls and red tape), my husband commented to me that
he had no doubt that our son’s life would be so much better, simply
because I was his mom. It was his way of thanking me for all the
effort I put forth, and it meant the world to me.
There
are definitely days that I get sad thinking about the things my son
won’t experience. Sometimes we have to say ‘thanks, but no
thanks’ in response to party invitations. The stress of an unknown
environment is sometimes too much for children with Autism. The
stress can lead to a meltdown which most people see as a tantrum.
They don’t understand the difference, and all they do is judge.
Last year for Halloween we waited in line at the pumpkin patch to go
on the train. He loves trains. Once he was on the train, I knew he
would smile and laugh and say ‘wheeeeeee!’ But that didn’t
happen. We couldn’t get on the train. Waiting in line on this
particular day was over stimulating. So, I carried him out of line
crying, kicking and screaming. My mom went and asked for a refund.
Everyone stared at us all the way to the car. I know what they were
thinking. Once he was safely in his car seat, I started to cry. I
wanted to go back and explain to all of them that it’s not what
they’re thinking, he’s not a spoiled brat, and as parents they
should not be so judgmental. But if they’re going to judge us in
the first place, they’re certainly not going to be open to hearing
me out. Instead, we left with our tails between our legs. It’s so
frustrating to know that he would have loved the train ride once we
got on, but for whatever reason the line was too much that day.
However, I can’t ask him why he’s upset because he doesn’t
understand how to answer. I can’t explain to him that once we wait
in line and sit on the train he would love it, because that doesn’t
mean anything to him.
This
past week I have been struggling with finding out the sad truth about
an organization that I formally supported. When my son was first
diagnosed, it was the first place I turned. I wanted help and I
wanted answers. An Autism diagnosis changes your life in a second.
Getting support and knowledge about the journey is a necessity.
However, I can’t worry now about what caused his Autism, and I
don’t want him ‘cured.’ I want him to receive the help, therapy
and guidance he needs to be the best person he can be. I want him to
grow up proud of who he is. I want him to be one of those
teenagers/adults with Autism that people know because they make a
difference to this community. I want him to learn how to process and
express his feelings. These are my new dreams for him. I want to
support organizations that want to see my son achieve these dreams as
well.
There
are times when my heart aches because my son doesn’t want a hug,
can’t tell me about his day, won’t want to play with me, can’t
tell me what he wants to do, where he wants to go or when he is
hungry. Some days he is perfectly happy and then will cry and
struggle for no apparent reason and he can’t tell me why. There are
days I want to take him to an amusement park or the zoo and want him
to enjoy it, knowing that he can’t. I want him to be willing to try
a new food and tell me whether he likes it or not. I want him to come
home from school and tell me about all the cool things that he did
that day. We’ve never had a conversation like that. These are the
times that Autism makes me sad.
Luckily
for me, these times are not often. I choose to stay positive most of
the time. Sometimes it’s hard reading so many different blogs and
articles because everyone has an opinion about how I should be
raising my child. It makes me second guess decisions. They want to
tell you what organizations to support, what diet to eat, where to
go, what to read, who to follow and not follow. I want parents to
know to trust their instincts for their child. Take what everyone
else has to say with a grain of salt, and follow your own path. I
stand behind my choices made about my son because they are made
knowing I just want him to have the best life possible. At the end of
the day, he is happy and he is so loved. The rest of it will work
itself out.
Tracy
is a proud mom to her 4 year old son and a beagle, and a proud wife
to her loving husband. She has visions of starting her own blog when
she has the opportunity to work less. She also has dreams of making a
difference in the Autism community to help other families and
children. She also has small but healthy addictions to Starbucks,
Twitter and Chocolate.
No comments:
Post a Comment