Background: My story but not a unique one

While I was pregnant with my second child, the plan was to return to work. The plan had always been to return to work and bring the kids to day care. I had a degree in public health that I planned to put to good use. I was eager to learn and make a difference in the world. But more than that, I wanted enough money that my family didn’t have to worry about money the way I had growing up. I wanted a simple life, to work to live but I also wanted to do work that I could be proud of.

When my son was born over two months early, I began my maternity leave and stayed with him in the hospital every day, 9-5pm, like a new full time job. After six weeks in the hospital, we were cleared to go home. The problem was, I only had six weeks left of my maternity leave and with a preemie, that was impossible. He was too small and fragile to send to day care and had too many follow-up doctor appointments to juggle. By six weeks old I had submitted for an unpaid leave of absence from work. I figured the extra three months would do the trick, but I had to extend it twice and by the time my son was nine months, I knew there was no going back. Life was too busy with appointments. I couldn’t bring my child to day care while he cried most of the day, and it was clear I needed to be with my family, so I quit. Work could wait.

While I loved being home with my children, and it was the right thing to do. It was also the ONLY thing I could do. I had no other option. There wasn’t specially trained daycare facility to take my high needs child to. There wasn’t (at the time) an option to work remote or flex my hours, and I was the sole caregiver of my child, holding all his medical needs and care inside my head. I had a new job that required all my time, energy, and attention. One that didn’t pay the bills but racked up more that our family could keep up with. But we made too much to get assistance and too little to keep the bills paid. We were walking a thin line, drying out our saving every single month. It was only at the very last minute did my husband got a raise and we let out a sigh of relief. Relief most families don’t experience. We were lucky. It would be another two years before I could handle a job, fully remote, and only ten hours a week. Had it been any more responsibility, it would have been impossible to manage.

The Case for Disability

The ADA defines disability as “a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.” According to the ADA some of those major life activities include breathing, walking, talking, hearing, seeing, sleeping, caring for one’s self, performing manual tasks, and working. Another requirement is that the condition must last longer than six months.

While I can’t speak for every single parent to a disabled child, I think I can be a good representation of what many families go through when they have a child with high support needs. I can argue and attest to the fact that parents to disabled children far exceed the above-mentioned criteria yet there is no consideration in how to support them while they care for children that are considered disabled who have medical complexities, need constant care for activities of daily living, are sometimes total care, and require hours of advocacy, paperwork, and therapy a week.

We lose our ability to earn income because, physically, our resources are going towards taking care of our disabled children. Our disability is a physical disability that takes up our time, energy, and resources. As time goes on, and we continually lack assistance in all forms, our personal health needs also evolve due to the stress. We become mentally and emotionally drained from the constant need to keep our child alive and accommodated and healthy while our mental health and physical health declines. It wasn’t long before I had an autoimmune disease of my own and then years down the road would be asking for anti-anxiety meds for the trauma of trying to control years of seizures and the emotional and physical strain my body was under every single day.

Do you see us now?

If what I just explained isn’t disability, then I don’t know what is. And if you want to talk about some of the social programs that exist for parents like us, let’s talk about how much paperwork comes with it. It took me a year of paperwork and processing and then a denial and an appeal to even get my child approved in the first place. Let’s talk about the shortage in childcare and nursing care that we can’t fill the hours we need. Let’s talk about the lack of a second income for years if not forever. Let’s also talk about all the families that don’t get any help at all or have a 10–15-year waitlist (looking at you NC) if their child isn’t considered “disabled enough” to warrant getting extra help”. And lastly, let’s talk about how everyone else has the opportunity to work, to easily run errands, to plan vacations, and so much more, while we do not because there’s no daycare for our children, there’s no after-school care for our children, and THERE IS NO SOCIETAL SAFETY NET for us, caregivers, to lean on. Thus why we need to be personally included in disability rights and benefits. There is no village.