Caregiving: Parenting A Medically Fragile Special Needs Child

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.

My Story

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.

A Dearth of Research

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.

Challenges for Caregivers

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.

• A prisoner to your home – That feeling that you can't leave your child alone in the care of others. I have both experienced this notion and seen it with other families. Even when you can have a respite care worker come into the home to relieve you, a trust factor comes into play. I found this incredibly hard my first time. I felt immense guilt and fear that something could go wrong and my not being there could tip the scales toward catastrophic results.
• Going out as a family – It should be just a normal thing, and to a degree, it is. We are fearless in that we will go and do anything with our son (within reason, of course). However, you will "feel" the looks and the stares. It's unavoidable and another obstacle to overcome. The moment you are in the public eye there is always someone who will look a little bit longer or a child who stares out of curiosity. There is no age range to this, and I don't hold ill will as I understand at a basic level this is a natural reaction we humans have to things we don't understand or are not used to. Even with that understanding, you will still feel like you are in a fishbowl, and if you are sensitive to that, it can potentially drive you back to the safety of your home or your vehicle to escape prying eyes.
• Traveling – One of the hardest things to do as a family. Now, don't get me wrong, I don't think I have ever encountered a company that didn't try and make our experience better. I am always appreciative of that, but the major hurdles often come from some fundamental things like food. If you are like us, you can't count on being able to find food that is suitable for your child on the road (Brutal reality check, not everyone has Mac & Cheese on their menu!). Also, keeping your child comfortable in situations like flying, which isn't exactly comfortable in the best of situations. There is one other major aspect that I'll cover in the next bullet point.
• Toileting – If you have a potty-trained special needs child, I am 100% envious. Our son sadly is not, so we rely on diapers to meet his incontinence needs. Early on this was not an issue until around age five. After that, this is likely your number one nightmare scenario as a special needs parent. Diapers are great until it goes beyond wetting. Picture you with a seven-year-old who has soiled himself early on during a flight. Do you just let it go and have them stay in their dirty diaper? As a parent and human being, that’s the last thing you would want to do. Now the challenge, what do you do?I attempted a changing with my son in an airplane bathroom one time, and it was the first and last time I tried that. Being 5' 11 and 215 lbs., I barely fit into an airplane bathroom as is but somehow thought I could pull it off. I think I managed to make it worse than it was. Looking back on this I can laugh as it feels like I lived an episode of I Love Lucy with everything that could go wrong, going wrong.

  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.

How to Make Things Better

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:

• Tandem shopping carts are a huge game changer for a special needs family. I first encountered these carts in a Target in Florida and have since used them locally at Target and Safeway. If you are unfamiliar, these carts have a large seat built into a cart specifically designed to allow someone with a disability to be in the cart with you as you shop. This should be a no-brainer for every retail store that needs shopping carts.
• Better restrooms and changing tables in the disability restrooms designed to be more than just a changing table for infants that are 4-feet high and can only bear 20+lbs. While we are at it, let's bring back the bigger bathrooms in future airplanes. Not one person on the planet thinks the current smaller form factor bathrooms are a good design, and I can guarantee every special needs caretaker would welcome this change.

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."