Notes from the trenches
You may wonder why I'm publishing this article on this platform. It's a fair question that I'm not sure I have a simple answer for. In part, it is a bit therapeutic for me. As a sales and marketing professional, it’s also an opportunity to raise a flag. I've found that the media and brands in general are becoming more sensitive to the challenges of disabled individuals. Yet, they’re overlooking the challenges of the parents and extended families who are caretakers for loved ones with severe disabilities.
In honor of Disability Pride Month, I hope that sharing my experience will help others who find themselves in similar circumstances or prompt more research into ways society can help alleviate some of the burdens faced by parents of children with extreme special needs.
I am a proud father to a special needs boy born with Dandy Walker Syndrome. If you are not familiar with his condition, you are not alone. It's a fairly rare condition that affects about 1 in 25,000 children. Dandy Walker is a cerebellum malformation diagnosed or developed at birth or within the first year. The effects of the syndrome can range from mild to severe developmental delays to impairment of intellectual growth and gross motor skills. Other abnormalities and conditions often present with Dandy Walker, such as heart defects, malformations of the urogenital tract, extra or fused fingers and toes, abnormal facial features, vision and sight issues and potential seizures.
Our son was diagnosed with Dandy Walker and a missing corpus callosum (the connective tissue of your right and left side of your brain) as well as a partial cleft palate. It was not the trifecta you wanted to hear upon your son's birth. In fact, his condition was a complete surprise to us. During the pregnancy, the doctor missed signs of the disorder in check-ups and tests.
That said, I think back on that and realize it was a blessing in disguise. We were able to celebrate our pregnancy with no knowledge of a pending issue which would have caused incredible stress on both myself and my wife not to mention questions of what to do or not do in terms of carrying on. Upon birth we were faced with the very real situation of his condition but even then, we didn't have a full grasp on how challenging his condition would be for him and our family.
Our doctor told us in that moment that our son may never be able to hold his head up and that the road ahead would be difficult. But we knew we were all in for our son the moment we laid eyes on him.
There are an estimated 5.9 million children with severe disabilities in the U.S. and most of them are cared for at home by their parents. Interestingly, there isn't a lot of research on families regarding special needs and even less so around the more medically fragile. I was able to find research on caregivers of older people and adults with disabilities and it shows that caregiving can take a mental and physical toll. "A substantial body of research shows that family members who provide care to individuals with chronic or disabling conditions are themselves at risk. Emotional, mental, and physical health problems arise from complex caregiving situations and the strains of caring for frail or disabled relatives."
The research that specifically addresses parenting special needs children seems to focus on divorce rates. Some reports cite high levels of divorce, while others state the research is inconclusive. I can tell you from first-hand experience it is not an easy life. My anecdotal observation is a strong family unit is key, and sharing responsibilities for care is a must.
Caretaking for the most medically fragile is both mentally and physically draining. The road will never be easy, and without progress in the child’s developmental skills, that road will get significantly harder as your child grows. Basic tasks like taking a bath will become even more challenging.
Tools and resources to help do exist. However, getting access to them is in and of itself a complicated and challenging endeavor. Early on, I was given great advice: to start tapping into resources as soon as possible as it will take a long time to get approved. I was also advised to work with our doctors to ensure our son's diagnosis was properly reported and to get all paperwork filled out quickly. Local and state agencies are often understaffed, so any questions or errors will lead to delays in getting help.
Even once you are accepted or approved for services you will still face an uphill battle for retaining them or justifying their existence for your child in the future. I understand that some additional steps are necessary to mitigate the risk of fraud, but it can be frustrating nonetheless.
Hopefully, you now have services set up and potentially some kind of respite via caretakers, so everything should be OK, right? Not so fast. That is just part of the hurdle. Another large challenge is your own mental state. In my opinion, this is the aspect of special needs that is not addressed. I couldn't find data specific to caring for special needs children, but the AARP Public Policy Institute conducted research that shows that nearly 40% of caregivers of family members experience emotional stress from caregiving.
The impact on mental health for those caring for loved ones in extreme situations can manifest in several ways.
The same challenges are there in other public spaces. Accessible stalls, while great, are still not going to be the right fit for trying to change a diaper on a child that is older than five. Not to mention that the accessible stall seems to be coveted by practically everyone who "wants more space" for when they go to the restroom but somehow forget how to be clean about doing so.
Above is just a small portion of the challenges parents of special needs kids face. These things and countless others like education pile up over time. It all can lead to unbearable stress on the family unit. How do we help? I don't have a magic bullet or plan. I am in the trenches every day, and I often can't see past what is in front of me. But if I had to put a few at the top of my list, I would say:
If you are still here reading, I thank you for reading through what seems to be a bit of a rant and, again, certainly therapeutic for me. I feel a bit selfish in writing this. My burden isn't your burden, and no doubt you have your own, so please accept my apology and thanks. I guess I have heard so many times the phrase "I can't imagine what it's like" that I thought just maybe I could help paint that picture for those who, at some point in their mind or out loud said, "I can't imagine what it's like to be in your situation."