Developmental Disabilities: A Mother Reflects on Her Son’s Recent Diagnosis
The stigma around developmental disabilities can rock your world when your own child gets diagnosed with one.
With caution and care, I opened the email I had been dreading reading for three weeks. It was finally here. I was about to find out if my son qualified for Special Education services from our school district. Half of my heart wanted him to get the support and the other half grieved for the fact that he might need extra support at all. No one wants their child to have to struggle. Especially due to something that is so out of their control, like prenatal drug exposure.
My son was prenatally exposed to opioids, heroin, fentanyl, methadone, cocaine, THC, and cigarettes. He is now 2.5 years old and about to age out of Early Intervention services within our school district. In order for him to continue receiving support through his preschool years, we were recently required to complete a Special Education Evaluation administered by our Early Intervention specialists. We attended three sessions where they used standardized testing forms to assess his ability to think, reason, speak, and demonstrate skills in a variety of areas. They interviewed me several times as well, and I did my best to show how far he’s come, how hard we’ve worked to get him to where he is, and all the potential I see in him; while at the same time trying to advocate for him to still receive extra support from therapists and educators.
I teared up as the 20-page report systematically laid out all of the things my son couldn’t do that he should be able to do by his age. It broke my heart. He is the most joyful, playful, fun-loving, silly little kid. I see so much goodness in him. Reading a report about all the ways in which he is seen as below average or deficient crushed my spirit in a deeper way than I ever could have expected. On the last page, I really felt my heart plunge into sorrow when I read the following:
“Disability”
My son has disabilities.
He is developmentally disabled.
Those words ran through my head like a cruel news ticker for the next 24 hours. I stared at my son, watching his sweet smile rise on his face as he laughed at a Bluey episode and thought, “He is magic. Why doesn’t the world see that?” Why isn’t, “Enthusiasm and Joyfulness,” something he could be tested on? How about, “Sense of humor and comedic timing”? He’d ace that test!
I sank into a little depression over the next day and allowed myself time to process my grief. He doesn’t deserve to struggle. No one does. But it’s extra hard when it’s for something that could have been prevented. I felt grief over his life story. I felt grief over his birth mother’s life story, that led her to the place she was when she became pregnant with him. I felt grief over all of the children born into an opioid epidemic where so many people in power who could help them don’t even see them or think about them at all. I hate that this struggle is his story. But as I started to rise out of my depression, I realized something and chose to grab onto it.:
My son is not made up of his disabilities. He is not his struggles. He is not words on a page. HE truly is MAGIC. That is what’s most true about him.
One of my favorite Instagram accounts for Speech and Occupational Therapy content, as well as disability advocacy, is @play_spark. One of their recent posts said,
“Disabled children have the same capacity for joy as non-disabled children.”
I loved it because it highlighted what matters most about these kids in the big picture of their lives. If we focus too much on what they aren’t capable of, we can lose sight of the super-abilities that are already in them. Another recent post said,
“Presume Competence: All kids have the capacity to think, learn, connect, and understand. It’s that simple, really.”
Again, they are putting the focus on what kids with disabilities can do, rather than what they can’t. They can think, they can learn, they can connect with others in relationships, and they can understand. All of that matters so much. Let’s not discount those vital skills, when they are labeled disabled for not speaking and moving and learning at the right developmental level for their age.
Developmental differences are sadly very common among opioid and polysubstance-exposed children.
Prenatal opioid exposure has been specifically linked to vision conditions like Nystagmus and Strabismus, Cortical Visual Impairment, Speech and Language Delays, Low or High Muscle Tone (which can impact balance, strength, and ability to crawl, run, walk, jump, and climb stairs on schedule), as well as lowered cognitive ability and nervous system regulation. Sensory and feeding challenges, along with poor quality sleep can also impact their ability to think and learn well. All of these conditions can affect infant development, and as in my son’s case, toddler and preschool development. Quite often, these struggles will lead to a Developmental Disability diagnosis in one or more areas.
I’m still sad about my son’s disabilities. But I am thankful for Early Intervention and all of the speech pathologists, occupational therapists, teachers, and specialists who got us here and have linked arms with me to advocate for exactly what he needs as he grows older. I’m focusing on his magic, and teaching him to see himself as magical, too. His disabilities do not make him deficient. He is filled with joy and uniqueness and he is able to do so many important things. That’s what makes him who he is.