Black boy joy with a unique touch! Meet Tiffany and Caleb
Caleb
is a happy 2 year-old boy (he will be 3 in June) who is a lover of cars, ABCs,
123s, colors, shapes, trains, music and just a few weeks ago, on March 21st,
we were diagnosed with autism. I am Caleb’s mother and his diagnosis came after
a long year of me being concerned and 5 months of me vehemently demanding
answers and advocating for a diagnosis.
My
initial concerns about Caleb started around when he was 18 months and were
primarily based around issues with feeding, speech and his repetitive
behaviors, which we used to call baby OCD. By the time he was 2 I had raised my
concerns with two different pediatricians. Once at his 1 year check-up and
again at his 2 year check-up. I was told we’d re-evaluate my concerns at his
2.5 year check-up to see if he would need speech therapy. Around this time, I
was starting to mention my concerns to family and friends in an attempt to get
validation of my feelings. I was usually met with statements that intended to
comfort: “He’s a boy! They develop slower.”
“Caleb does things in his own time; nothing’s wrong with that boy.” “He’s a normal toddler.”
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| Caleb and Tiffany |
Despite the
intent, these words didn’t help. However, not everyone had the same
response. I was comforted by those
around me who said, “You’re his mother. If he is diagnosed with something, that
doesn’t change anything.” “Caleb is brilliant, who cares what the doctors say.”
Those words are the words I focused on because at the end of the day I knew
Caleb was different. I never thought
there was anything wrong—I just knew he was different. A mother always knows!
Almost
immediately, I started researching autism and sensory processing disorder and I
recognized my child in the stories even though none of the faces looked like
his. I read up on successful and even famous people with autism and quickly
realized that Caleb could and would have an extraordinary life but again none
of the success stories looked like him. What saddened me is that the most
successful people with autism were a result of early intervention, which I
learned is not common in minority communities. It would be easy for me to blame
the system but the more I thought about it, and the more I experienced, the
more I realized that our own communities and ignorance played a role. What if I
had listened to all those comments about Caleb being fine and just waited to
see how he developed over time? His pediatrician definitely wasn’t as concerned
as I was. What if I was afraid of a label and let my own fears deter me from
following my intuition?
The
only reason we ended up with our speech referral a month before he turned 2.5
was because he was dismissed from daycare for behavioral issues and the
daycare’s director was kind enough (and brave enough) to say something is not
right! Caleb is frustrated and he can’t communicate and you need to speak to
your pediatrician. She knew that this wasn’t just terrible twos and so did I.
That day I called the doctor and got our referral. Within the first two weeks
of meeting with his speech therapist, Caleb was already speaking about 75%
more.
This
is when I knew that this was just the beginning of the journey for us. A
journey I would document in great detail on my blog A Mama Bear and her Cub.
The
following weeks were a world wind of advocating. I was given referrals for
occupational therapy and the ear, nose and throat doctor. We got his hearing
checked and got on a 6 month long waiting list to see a developmental
pediatrician and the entire time it was only his speech therapist who mentioned
that Caleb’s symptoms COULD be associated with autism. I persisted on, almost
to the point where I felt bad for pushing the issue. I didn’t want to wish this
on us but with each appointment only part of my concerns was addressed. It
didn’t feel like anyone was giving me the whole picture. I still had so many
questions, so many whys?
I am
persistent by nature and once I get an idea or task in my mind, I am set on
completing and completing it thoroughly. So although we were seeing
specialists, I continued to do my own research. My blog opened up so many
resources for me. I created a social media account specifically for A Mama Bear and her cub and followed and connected with all kinds of resources. I
followed occupational therapists, speech therapists, mom blogs, autism
awareness groups and sites. As a result, two pivotal people reached out to
me.
The first was an occupational
therapist in Kansas who gave me advice on what to look for in not only
therapists working with Caleb but also the type environment in which he
received treatment. The other was ex-coworker and friend who had been touched
by my blog because her son was diagnosed with autism a year ago and she had not
shared that with anyone except her family. She reached out to thank me for my
bravery. She was another African
American mother. My story mirrored hers so far—she was the validation that my
mama bear instincts were right which was both scary and a huge relief.
She
informed me that each state had FREE federal programs for autism screening and
services and sent me the link to my agency here in Florida. She was the ONLY
person who had ever given me this information. Until that day I had been paying
the copays for my insurance to get Caleb his therapy. I thought about all the
African American families who may not have insurance, who may not know about
this FREE FEDERAL program that is in EVERY STATE and is for EVERYONE despite
their economic status or their household income.
In my opinion, this was yet another reason
why I did not see images of people who looked like Caleb when I researched
success stories of people with Autism. Were they not getting access to this
early intervention program? The program I am referring to is called something
different in each state, in Florida it’s called Early Steps and is available
for children from birth to 3 years old. Every county has their own division typically
associated with the local children’s hospital. I learned about this when Caleb
was 2 years and 7 months old and he was enrolled right away. I took advantage of the opportunity and in
doing so we were able to get a diagnosis sooner than if we had to remain on
that 6-month waiting list.
Getting
a diagnosis is a WIN…PERIOD! It’s a win for the child and a win for the
parents. This is a win because having a diagnosis opens up additional resources
and opportunities for early intervention. Autism is not a disease but if identified early it can be treated with various
therapies and assistance from professionals for both the children and their
parents. What parent doesn’t want or need additional assistance?! Additional love
and attention poured into these babies who absorb everything is always a win in
my book. Children with autism are not less than— they are just different. And
they need people who will think outside the box and take the time to get into
their world to help them navigate through it.
Did
I cry? ABSOLUTELY! The morning of the appointment I had my game face on, I gave
myself a pep talk. I even asked my mom, who accompanied me that day, “Are you
ready?” I laugh now because I was the
one who wasn’t ready. The minute I heard the words “I am diagnosing Caleb with
moderate level 2 autism” I fell apart. I was not ready. It’s never easy to hear
that your child may have it harder than the rest. The facts are he is a BLACK
BOY IN AMERICA WITH AUTISM. The sentence alone is frightening without the
autism aspect and that just compounds it.
I
took my 5 minutes of heart break (maybe it lasted the rest of the day) and then
got back to being a mama, a ferocious mama bear in fact. My research will
always continue, as long as there is air in me. There is nothing that I won’t
find and track down to help Caleb live his best life. I am so excited to
continue to advocate for my child. It is a power beyond what I even experienced
when I became a mother. It is a fire that burns in me to protect and educate by
any means necessary. I don’t need to keep on looking for people that look like
Caleb who have done great things because he will be great regardless. It is my
hope that he will be the face for others. It is my hope, that by advocating and
taking every opportunity such as this one to write our story that parents don’t
let fear stand in their way. Autism is going to be a lot of work, I know that.
I accept that. But it is not going to define Caleb or his life. Every day he
develops a little more and it’s a great joy to watch.
Toni
Morrison once said “If there is a book that you want to read, but it hasn’t
been written yet, you must be the one to write it.”
I’ve
already started writing and it won’t stop anytime soon.
April is Autism awareness month, for more information on autism awareness for Black children visit: Autism In Black
