Over the past couple of weeks, a lot of people have asked
about how Brody was diagnosed and what lead us to even pursue an autism
diagnosis on the first place. That was a very scary time for us, and I usually
provide some sort of watered-down description, but not the whole story.
Here is the whole story.
Brody was 100% typical, maybe even a little advanced in his
motor skills…it was really exciting. He was drinking from a cup before age 12
months, he said his first word at 10 months, and he walked right at about 14
months. He loved it when we read to him, even as a baby. He would sit in our
laps as we read books, just like his brother did. He let anyone hold him. He
NEVER got sick, ever! He loved peek-a-boo and we filmed him playing all the
time – a lot of those videos are painful to watch now and I try not to see
them. Everything was perfect. I had my beautiful baby boy and my big boy,
Destin, under one roof….and I wasn’t working much so it was amazing. I made Brody’s
baby food from scratch, took the boys everywhere (Cardinals games, the beach,
restaurants, parties, even bars! Everywhere!), and we were having a blast. What
else could any woman want? We even talked about having a third baby – we lived
in a tiny house and wanted another kid. We were kinda crazy. But we were ready
for more children even though our bank account was not.
By his two year old birthday though, we started to see a
change. Brody no longer cared about books; he just wanted to run around the
room or watch cartoons obsessively. He stopped talking altogether. He never ran
to me when I picked him up at preschool. He stopped playing with toys.
Everything STOPPED. But his gross motor skills were pretty age appropriate. We
never heard his first words again and they are just now coming back. At first
we passed it off as just being a “late bloomer” or the “terrible two’s.” But
his 2 year old checkup was a game changer.
Our pediatrician prescribed speech therapy at age 24 months
and off we went. I took Brody to speech about 4 times a week and sometimes 5
times a week. I maxed out our benefits and literally took him whenever they had
an opening. After his third visit I asked the speech therapist if she thought
he was autistic…(he had scattered eye contact and his speech was not
progressing much if at all).
“Do you really want to know?” She asked.
Well I guess I had my answer.
After hearing this, I took immediate ACTION. I found the top
neurology practice in St. Louis and we were in the following week. The first
doctor thought Brody was just delayed and needed some OT, PT and Speech ASAP.
The other two doctors were 100% sold on autism, as well as
our pediatrician.
I remember the discussion vividly…and how our pediatrician
softened it. She said that with an autism diagnosis, doors will open for Brody
and you will see how many services he will qualify for. She framed this as a
positive…like we had an answer finally.
I do not remember going crazy or crying a lot. I remember
being asked a lot about his progress and Brody being compared to other kids….I
really pulled away and did not want to have to explain anything.
After the shock of
the diagnosis came the reality of what had to happen. We had to get Brody into
the best school we knew. We had to move. After months and months of tests and
referrals, Brody was placed in Parkway’s Early Childhood program and he was
getting 8 hours of therapy a day. I felt this superior sense of victory when he
was awarded this help. It was hard sitting through meeting after meeting about
his delays, but it all paid off. The hours of assessments and roundtable
discussions with administrators was paying off. He was now in expert hands. And
we got to move back to my old neighborhood in Chesterfield.
The whole process was a whirlwind. And at the time this was
all happening, Destin was in kindergarten. We both still feel as though he was
short changed during this special time in his life. We were so absorbed in our
other son. We even had to pull Destin from the private school he loved. It was
tough. But I plan to make this up to him when he is older and send him to
private high school.
Fast forward to now and Brody is still in Parkway. With
autism, you take two steps forwards and one back every single year. Brody is
now seven years old. We both are taken aback by how precious and sweet he is.
He does have episodes and meltdowns from time to time, typically when there is
a change (early summer, holidays and some parties are hard) but overall, I
consider us pretty damn lucky. He is still nonverbal but that does not damper
his personality whatsoever. He is the most joyful, fun, charismatic little boy
who literally steals your heart. But if I could cure his autism, or trade
places with him, I would.
Autism is a cruel syndrome. You have your little one, and
then they are slowly taken from you. You see them drift away and all that is
left is some cases is anger and sadness. But we are getting him back….we see
pieces every month of the Brody we had as a baby.
An autism diagnosis is scary at first. But it is nothing to
avoid or to deny. By denying your child’s disabilities or issues, you are only hurting them. There is light after the
dark. It may be hard to hear at first, but there is a way out of it.
Some things I have learned and hope to pass on to other moms
or dads of special needs kids:
-
Stop blaming your pregnant self, moms. I did
this for years. I blamed myself for Brody’s autism and thought that all of my
issues in pregnancy led to his diagnosis. In my opinion, autism is not caused
by something you did or ate or smelled when pregnant.
-
This one is harsh….It’s NOT ABOUT YOU. You may
be sad to see your son in a therapy class, you may be sad that your son cannot
ride the bus to school or attend a zillion birthday parties, but it is NOT
ABOUT YOU. Sure it makes you unhappy to know he has a delay or an issue, but
this is not about your feelings, is it? It’s about what is best for your child,
not what makes you feel good.
-
Take your child out of the race. Stop comparing
your child to others. If your child has a disability, it is time to remove them
from the race of development with other kids. Your child is now playing a
different “sport” so to speak. They are on their own field. So, do not torture
yourself by comparing him or her to another group of kids. We used to do this with
Brody and it got us nowhere.
-
Become a bitch. But the right kind of bitch. I
am as sweet as can be to ALL of Brody’s teachers…they kill themselves for my
son and will do anything for him everyday. I am grateful. But I am not afraid
to tell any of them new information about my son or make suggestions. I’ve
learned this is important in IEP meetings. You can be bitchy to get what you
need for your child, but use it wisely.
