Robert had Autism?

Yes.

Rarely did Robert make eye contact early in his life and rarely did brushing his light brown, curly hair end quietly. Brushing his skin with a soft baby brush in therapy sessions slowly improved his ability to receive touch … whenever he was strong enough to participate, rather than resting in his car seat as he recovered from a seizure in the therapist’s parking lot.

We had medications, equipment, therapists, teachers, and medical teams surrounding Robert at all times, teaching us how to care for him. In and out of the clinics and hospitals, we learned about his profound medical complexities. On his list of diagnoses, Autism was written far down on the list as we managed trying to keep him alive.

Why did I place Robert’s diagnosis of Autism so far down on this list? Though it played a significant role in how he interacted with others and responded to stimulation, it was the relentless daily seizures he endured that hindered his ability to thrive and progress. Whether he looked me in the eye or allowed me to brush his hair was really secondary, even though it was important.

In the United States, Autism Spectrum Disorder (ASD) is reported to be found in 1 of 36 children. It does not discriminate across racial, ethnic, or socioeconomic groups. ASD shows up everywhere and is four times more often diagnosed in boys than in girls. Children with Autism are usually found to have a developmental disability, and in Robert’s case, his ASD diagnosis was confirmed long before we had an indication of his severe mitochondrial disease.

Mitochondrial diseases are rare, and Autism Spectrum Disorders are much more pervasive. However, regardless of the rarity of either diagnoses, the care, understanding, and attention needed from family members and specialists has the greatest impact when early, vital treatment is introduced in a child’s life.

In Robert’s life, there were often delays in learning the true names of his several disorders. These gradual revelations made it difficult to pace ourselves as a family on the “spectrum” journey. It truly takes a community to succeed. And succeed in our case sometimes just meant waking the next morning with Robert still alive and in our arms, whether his disorders were controlled or not.

There is such a broad range of and effects to consider with any spectrum disorder. I applaud you professionals and caregivers who give and receive an Autism Spectrum Disorder diagnosis at any level.

Celebrate April 2nd - World Autism Awareness Day with me today!

Let’s bring awareness and understanding to our friends and their caregivers.

Listening Library: “Breathe” (DOE)

https://youtu.be/13z9A5kuKkI?si=2edbiGlm07KnTw5X

Breathe

Sometimes I wanna tap out

Sometimes I wanna take a break

These days I want a time-out

These days I wanna be fake, ooh-ooh

No one never really knew me

Everybody says they know me

I wish I could introduce me

I don′t even really know me

I guess I don't really have to have it all figured out

′Cause you don't really need that from me

Yeah, I guess I don't really have to have it all figured out

′Cause you don′t really need, all I have to do is

Breathe, ooh-whoa

Just breathe, ooh

I'm just tryna wake up

I′ve been tryna keep my head up

Sittin' listenin′ to the radio

Sippin' tea on the patio

Why are you texting me this early?

Haven′t even talked to God yet

Can I put my feet on the ground and

Breathe, ooh

Just breathe, ooh

Just one of those days

I'm stuck in my head

I can't find my way

I won′t even try

Just one of those days

Thoughts in my head

I′m feeling a way

I won't even try

Breathe, oh

Just breathe, ooh

Yeah, I guess I don′t really have to have it all figured out (breathe)

'Cause you don′t really need, all I have to do (just breathe)

Just one of those days

Writer(s): Dominique Jones, Dewitt Jones, Judah Jones, Lyndja Canal