Autism.
One of the words that no parent wants to hear uttered about
their child. But according to the
Centers for Disease Control and Prevention (CDC) about one in 59 children has
been identified with autism spectrum disorder (ASD). This number is up from the
one in 150 reported in 2000.
Now to be fair, part of this exponential growth is due to
changes in definitions as well as better research a better understanding of
ASD. But when it is your child -- especially if it is your ONE and ONLY child
-- you don't care whether it's one in 59 or one in 150. All you care about is
the one.
We had the blessing of being able to adopt our child from
the day she was born. We made it to the hospital about 15 minutes after she
popped out, and she has been with us ever since. Before I get into her
diagnosis of autism, let me tell you a little bit about her parents. Josh and I
were both quiet children who did as we were told and gave our parents and
teachers very little problem. I call us little lumps. We grew up in homes where we did not have
parents or siblings with special needs. And neither of us have had a lot of
interaction with people who have special needs.
And then we became parents.
Now, at first what we saw in our child was exceptionality.
She could identify all uppercase and lowercase letters before she was two. She spoke
her first full sentence (not repeating an adult) before she was a year old. We have
friends who had a two-month old baby. Anna was about 10 months old, looked at
the sleeping baby and said, "Wake him up!" At 11 months old, she made
up her first joke. She had shoes with Winnie to Pooh on them. I asked her,
"Who's on your shoes?" She smiled and said "Melmo (Elmo)."
I told her, "That's not Elmo -- that's Pooh!" And her reply was,
"Ha! Ha!" So we knew we had a smart one on our hands.
By the time she was two, along with the intelligence, she
was learning to express her feelings -- very clearly. Stomping her little foot,
crossing her arms, and saying, "I angy (angry) at Daddy!" was not
uncommon. But she also had times (many, many times) that she could not clearly
express herself. Now I know all children "throw fits" from time to
time, but hers were of epic proportions. And we had no way of knowing that this
wasn't normal. We had never been parents before, and we knew that we were both
extremely compliant children, so we didn't know that her outbursts were
unusual. We just thought she was a strong-willed child (believe me -- she
is!). But both of our mothers knew the
difference, and they both expressed that she was over-the-top. They thought we
were just letting her get by with misbehaving and offered their opinions as
such. But at home, we knew better. We knew that we were trying our best to hold
this little person accountable to her actions (as much as is possible with a
toddler) and trying to teach her appropriate behavior. And for every step we
would go forward, we felt like we were taking giant leaps backward.
When it was time to send her to Pre-K, we decided that she
needed the experience so that she could learn to interact with other children
(and other adults) appropriately before real school started the next year. We
struggled through Pre-K and were encouraged to start her on medication for ADHD
before she started Kindergarten the next fall. So we did. And let me tell you,
some ADHD medications can make outbursts FAR worse than any benefit you get
from them. And some of them don't work at all. It's a crapshoot.
We made it through a rocky, but okay Kindergarten year. She
already knew all they were learning, so she was bored in Kindergarten. So we
and the teachers marked some of her behavior up to that. We had started taking
her to a child psychiatrist who diagnosed her with social anxiety as well as
the ADHD. And we made the decision to
move to a smaller school district where our child wouldn't be so overwhelmed.
This turned out to be the worst parenting decision I hope we will ever make.
Now keep in mind, at this point our daughter is only
entering 1st grade, and we have not had the diagnosis of autism. I could go on
for pages and pages about all of the horrible things that we dealt with at this
school, but let's just say that the Principal had no business working with
elementary school children. We had her on a 504 plan, and we ended up getting a
child advocate involved and meeting with the Superintendent to have the
Principal removed from our child's daily routine. The Counselor at the school
was completely worthless as well. She actually at one point told me my child
was "a head case" and that if she were her child, she would have her
committed to a program. The real problem was that the adults there knew which
of her buttons to push to get a reaction and actively sought out opportunities
to do so. Unfortunately, this is the story of far too many parents of children
with special needs.
So we obviously made the choice to move her to another
school district. And it was one of the BEST parenting decisions we ever made.
While her psychiatrist still wasn't ready to accept the diagnosis of autism
(because she is VERY high-functioning), the new school tested her and gave her
the diagnosis of educational autism. And to be honest, we were not really ready
to accept it. But after a couple of years, we had official medical testing done
to have the official diagnosis made. By that time we understood that even
though the label will give her a social stigma, it will also give her some
legal rights that will help her to get the education she needs and deserves
(she is SO smart!!) to be a productive member of our society. If society will
accept her.
Nobody wants their child labeled as an outcast.
And that's what a diagnosis of autism feels like. You know
that your child will never be accepted as a "normal" child by most
people. And if your child is high-functioning, people will be even less
understanding. In her younger years, we have not found her peers to be
unaccepting of her as she is. It is the adults in her life. Teachers (especially
the ones in her specials classes like Library and PE), dance instructors (got
kicked out because "it's not fair to the other children that I have to
spend extra time with her"), Sunday School leaders (don't even get me
started…), and even at times her grandparents, aunts, and uncles.
And we know as she gets older, her peers will be less
accepting. I mean, let's be honest -- they are learning how to treat people
with autism and other special needs from the adults they have been watching for
years. And we have found that far fewer adults try to help her succeed than try
to hold her back or even crush her because of her disability.
So what is there to be thankful for when your child is
diagnosed with autism or some equally terrifying disability? Well, the first
thing I am thankful for is that our daughter has us for parents and not some of
the people who have treated her so badly in her short little life. Not that we
are perfect parents by any means -- but we have been very intentional in the
choices we've made for our family, making sure that we try to do what is best
for our child with special needs, and not just what is best for us. And I can
promise you that some of the people we have had to deal with in regard to our
child would not make the same sacrifices were they in our shoes. I am very thankful
to have had my eyes opened to those around us who have special needs. My heart
is softer now, I am more understanding, and I am a better person for it. I am
also thankful for all of the wonderful friends I have made who either have
children with special needs or work with children with special needs. There is
a very special group of individuals out there who have a heart for those of us
who are differently-gifted, and I am proud to say I know more of them now. They
are champions, and they are my heroes.
People with autism are people. We as a society often treat
them as though they are less important than the majority -- who don't have to
struggle to function in a world that does not accept us. Those who are the
least able to fit into the box are expected to try many times harder to do so.
And it makes no sense. If you are the parent of a child with autism or other
disability, remember that you are not alone -- even though it often feels like you
are. There are many support and advocacy groups for parents just like you --
just a Google search away!
Here is an article I found helpful: https://www.friendshipcircle.org/blog/2013/07/15/15-indispensible-websites-for-parents-of-children-with-autism/.
I have no affiliation with the writers of this article.