A place where Black Mothers can celebrate excellence and motherhood.

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.” 

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.

You can connect to Tiffany and Caleb on their blog Here and on Instagram

April is Autism awareness month, for more information on autism awareness for Black children visit: Autism In Black

No comments:

Post a Comment