March is a month dedicated to spreading awareness for both developmental disabilities and brain injuries. These are both two causes that are dear to my heart.
The CDC defines developmental disabilities as “a group of conditions due to an impairment in physical, learning, language, or behavior areas. These conditions begin during the developmental period, may impact day-to-day functioning, and usually last throughout a person’s lifetime.”
Typically a child is diagnosed as developmentally disabled before the age of 18. Sometimes a child is neuro-typical at birth and maybe even into early childhood but an illness such as a debilitating virus or a seizure disorder causing intractable seizures stops them from reaching developmental milestones.
Brain injuries also can occur at any time in a person’s life from an accident or a disease that causes hemorrhages in the brain.
According to the Brain Injury Alliance of New Jersey website: “A brain injury is an injury to the brain that occurs after birth and is not congenital, degenerative or hereditary. The injury results in a change of the brain’s neuronal activity. There are two types of brain injury: Traumatic Brain Injury and Acquired Brain Injury. A brain injury may produce an altered or diminished state of consciousness, and result in an impairment of cognitive abilities or physical functioning. It can also result in the disturbance of behavioral or emotional functioning. These impairments may be temporary or permanent, and cause partial or total functional disability.”
Over the years, I’ve met many distraught families in pediatric ICUs whose children were developing normally but who suffered a severe brain injury as the result of a car accident. Many of them are teenagers.
I also recall meeting a mom whose six-year-old daughter was diagnosed with a large cavernoma in her brain, just like the ones in my daughter’s brain. This mom was distraught and the neurosurgeon asked if I would speak to the woman.
When I did, mom was grateful her daughter was alive, but really concerned at how she was going to keep her daughter from doing the things she loved to do — like riding her bike — until such time as her brain was sufficiently healed. She asked me how I kept my daughter resting so her brain could heal.
I struggled to answer the woman honestly without trying to scare her about a future with a lesion in the brain which is susceptible to bleeding. While I sympathized with her fears and concerns, I couldn’t relate to having a daughter who was developmentally typical and then lost skills.
My daughter Johanna at 10 years old did not have the balance and cognition enough to ride a bike independently. Jo sat up at one year old and took her first steps when she was 2 ½. Even then the progression of skills was interrupted by brain hemorrhages, and shunt malfunctions that injured her brain and halted these basic skills.
Johanna falls into a category all her own as someone who was disabled at birth and diagnosed at three months of age, but who experiences ongoing brain injury as a result of bleeding in the brain.
I prefer to call her a miracle.
In the past 24 years since Jo was diagnosed, we have met some wonderful people with disabilities and families and professionals who care for their unique needs.
Families whose kids are developmentally disabled are on a roller-coaster ride for which they did not line up. It’s a club no one really wants to join. In our case, I knew something was different about my daughter in the delivery room. She was our fourth child and I was a seasoned mom. But it took 12 weeks to lead to an actual diagnosis of hydrocephalus as a result of a large brain tumor pressing on the brain stem.
Many parents and especially moms of kids with developmental disabilities know instinctively that there is something different about their children long before doctors and therapists confirm a diagnosis. Call it maternal intuition or a gut sense — we just know.
While knowledge is empowering, it can also be devastating to a family to realize that all your hopes and dreams for your child may have to be adapted and/or changed forever. No one wants their kids to be dependent on others.
Most families acknowledge the stress of caring for kids with disabilities and find their way to get through — building supports and advocacy along the way.
But I think the most complex emotion that is hardest to face as a parent and loved ones of a child or adult with developmental disabilities and/or brain injury is grief.
It’s hard to grieve someone who is alive and breathing right in front of you — so most loved ones can’t name that struggle. Someone who is cognitively impaired through brain injury also goes through the grief of losing the life they once lived.
How do we grieve the life our loved ones once lived which was interrupted through brain injury or had the potential to live before the developmental disabilities, while still being grateful for the life they now live?
I believe the key is to find ways to connect to the heart and soul of the person. Every person has a way to reach them, some are just harder to find. I remember when my daughter was first diagnosed, I worried that she would not have or could lose the ability to communicate with us.
As the youngest of four, Jo quickly learned how to speak before she learned to move. There was always someone talking to her, reading to her, and holding her in their arms. But Jo has also lost her ability to speak at times especially after brain hemorrhages and seizures.
At those times, we used music to help Jo learn to speak again. My husband would play his guitar and we’d sing church songs, Christmas carols — whatever we could do to get Jo to sing. And eventually, she started talking again.
Art is another creative pathway that can help family members and others connect to people with developmental disabilities and brain injuries. We transformed a shed in our backyard as a place for Jo to do some artwork and display it. But now, since the pandemic, her artwork has expanded into our living room and beyond.
Studies have shown that pet therapy and service dogs can also help to connect and assist people with disabilities as well as relieve stress. Our house is filled with therapeutic animals— first and foremost Jo’s service dog Rae, a tremendous gift from Canine Companions for Independence.
But we also have seen our cat perching on Jo’s shoulder when she needs an extra paw. And now our chickens are surprisingly becoming therapeutic tools to keep Jo busy with “chicken chores” and collecting eggs at her backyard farm.
Whatever way families and others connect with people with developmental disabilities and brain injury, it’s important to remember they are people with hearts and souls, gifts and dreams.
I remember hearing a creative definition of intimacy that resonated with me as it relates to my daughter. The speaker slowly talked about translating the word intimacy as “into me, see.”
Every human being desires to be seen and respected — especially people who, because of disabilities and brain injuries, have a harder time navigating and expressing themselves.
I can tell you from living in the world of disabilities as a parent and an advocate for close to 25 years — a beautiful life lies within the person with disabilities if only we take the time to see inside them and show them we care.
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