Please welcome my friend, Jennifer Butler Modaff, whom I convinced to be our Guest Blogger on Nathan's Voice! We encourage you to check out her blog and follow Caden's Tale. Please leave a comment below to share how much you enjoyed Jennifer's post.
Lorrie
Born August 15, 2006 Caden was a
beautiful little boy who loved to be held; actually he only liked to be held so
we did a lot of it. I have never been as thankful for recliners as I was in
those early months of his life. He also wasn’t a fan of bright lights, and we
often joked that maybe I had read one too many vampire books while
pregnant.
By a year old, Caden was well on
his way to talking, and he could easily identify mommy, daddy, his big sister
Ry Ry, cat, dog, and several dozen other words. We would play a game in the car
where I would ask him to say “mommy” and he would say “daddy.” I’d say, “no, Caden, say mommy,” and
inevitably he would say “daddy” again.
I’d smile and say “oh, okay, Caden, just say daddy,” and he would crack
up laughing while he said “oh mommy.” It
was a game that we played dozens of times, and one that I have since relived, a
million times in my dreams.
Around 15 months of age, Caden
started losing some of his words. By the time he was 18 months old, he had lost
all but two words if we count “uh-oh” as a word. I would casually mention to our pediatrician
at each appointment (due to an immune deficiency there were a lot of
appointments) that I thought something was wrong, and each time he would pacify
me with a story of how his little boy had lost some words too, or how another
child he cared for was also extremely shy.
Each time he reassured me that this was just a phase and there was no
need to overreact. You know how we mothers can be sometimes.
Finally, one night, I emotionally
broke down in the shower, and had a nice long cry over the fact that I hadn’t
heard my precious beautiful boy say “mommy” in weeks. Later that night, as my husband and I talked,
we realized that the word “mommy,” and so many more, were just gone. Our little boy no longer verbalized requests
or demands; he instead relied on a gesturing system. Shyness was replaced with the complete
inability to tolerate people in his space, to the point that anyone who dared
walk down the same grocery store isle as us was treated to a banshee-type
scream. Caden could no longer recognize
anyone out of their context, and everything in our house was either lined-up or
stacked by size and color. And every
single door in our house had to be closed as did curtains or blinds.
Honestly, I think the
pediatrician eventually gave us a referral because he was tired to hearing me
ask about Caden’s developments. I was
thrilled that we were being referred for evaluation, but that joy soon turned
to despair when we learned that the wait was 6-9 months at our local Children’s
Hospital. Thankfully, our speech
referral moved much faster. During that
evaluation, the speech language pathologist came back in the room and asked me
if I had ever considered autism. This
wasn’t one of those unexpected oh-my-goodness where did this come from moments;
instead it was relief. The relief lay in
the fact that someone else saw what we saw and was confirming what I had been
reading. Then, she asked me if I was interested in the new interdisciplinary
autism evaluation clinic that the university was getting ready to start. With a verbal confirmation and a signature,
the evaluation could take place two weeks from that day.
The speech pathologist confirmed
the language loss wasn’t typical, and without a lot of fanfare the evaluation
team would confirm that Caden was on the autism spectrum. At the end of the evaluation day, we asked if
our suspicions were on track and the therapists said yes. Then during a one hour meeting shortly after
Caden’s 2nd birthday, they reaffirmed his diagnosis, handed us
packets of papers and brochures, told us there was no cure, resources were
limited, and then wished us luck, as the next family was waiting to hear what their future looked like.
For a few moments, my husband and
I just sat in the car in silence. Then
we quickly we realized we loved our son before the meeting, and we had already
been dealing with the behaviors; nothing had changed other than the fact that we now
had a label for which we could pursue services.
And although it seemed like the world should stand still, life marched
on.
We quickly learned the autism
lingo: ABA, SLP, PT, OT, SPD and so on.
We realized we were no longer just parents but, also advocates for our
son and others on the autism spectrum.
Suddenly, we were living billboards and public service announcements for
myths and facts about autism. We were
fortunate that we saw eye-to-eye relationally on what we wanted to try and what
we wanted to avoid for Caden. Caden,
like most children, hasn’t read the autism “manual” so many of our “great”
ideas have failed. We joke that we have the black hole closet for therapy items
that failed to pass the Caden test.
When Caden was 3, we made the
decision to enroll him part time in our local Head Start educational
program. It was quickly apparent though
that while he didn’t engage the other children, he loved the routine and ritual
of school, and we switched his enrollment to full time. It was during this year that he started to
regain some language and we realized how precious every mispronounced word
really was.
We celebrated Caden’s 5th
birthday on our way home from service dog training. I can honestly say, Elf, our autism service
dog, is a doggy angel who has truly changed our lives. He has helped Caden overcome some of his
anxiety and helps him work through meltdowns and sensory challenges in
remarkable ways. He certainly isn’t the
answer, or cure for autism, but he has been a furry and amazing addition to our
toolbox.
Life isn’t easy for a kid with an
autism spectrum disorder. At the tender age of 6, he has been in school full-time
for 4 years now. Three days a week he
leaves school early, in order to do in-home therapy and a 4th day he
completes his hours after the school day is finished for a total of 14 hours of
therapy a week. The therapy combines
speech, occupational therapy, physical therapy, social skills, and life skills.
He plays with a peer mentor from the university for a few hours each week in a
variety of social settings and engages in adaptive sports at the local Y with
karate, baseball, soccer, and swimming being particular favorites. I’m sure we could be doing more, but we’re
committed to allowing him to be a kid as much as possible. Thankfully, his therapy is often play or
craft-based so he enjoys the time that he puts in and he loves the adult
attention.
We are an autism family. We live autism in our personal lives and have
figured out how to incorporate it into our professional research lives. Ironically, 6 years ago I doubt I could have
defined autism for you, and never imagined that I would run an awareness page
on Facebook and have my own blog dedicated to our experiences. The road isn’t easy and it often contains
unexpected twists and turns. The thing
though is that we’ve learned to truly savor the accomplishments and we know how
special “special moments” really are.
For the first time in my life, I truly understand what it means to say "Life
isn't about waiting for the storm to pass.... It's about learning to dance in
the rain."
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