I’m gonna get really real, really quickly. There are times when being a mom of a child with special needs is incredibly frustrating. There are hoops to jump through, insane amounts of paper work to fill out, and so many doctors to keep track of that you might as well have entirely different purse just for their business cards. When we found out our daughter would be born with a neurological disability, I knew we would face some unique challenges. It’s one thing to anticipate those challenges, and it’s an entirely different thing to be in the thick of them.
The best possible care
One of the biggest frustrations I have had as a mom raising a daughter with special needs is wanting to provide my daughter with the best possible care, but being limited by finances. Being in the middle class has put our family between a rock and a hard place. We don’t make enough to be able to easily afford extra (expensive) therapies, but we also don’t make too little, qualifying for government assistance. I know I’m not alone in this battle, which is why I wanted to share a small piece of our story with you in hopes that this might reach another family who finds themselves in a similar situation to ours.
Even though my daughter was diagnosed in utero with a neurological disability, her condition alone does not qualify her for Medicaid. And while we have good health insurance, after she was born and the many months to follow, the medical bills just kept coming. As soon as one was paid off, three more would arrive in the mail and it felt like we just couldn’t catch our breath.
Between the specialists, surgeries, and therapies, I dreaded checking the mailbox every day because there was likely yet another bill to add to our quickly growing pile. One thing I would not, could not, budge on was my daughter needed occupational and physical therapy starting around four months. Even though it was expensive, it was not optional. So here we were, on two teachers’ salaries, trying to figure out how to best provide our daughter with what she needed without ending up with zeros–or worse–in our bank account at the end of each month.
I was expressing this frustration with our Services Coordinator from the school during one of her home visits. We started talking and brainstorming what we could do. Later that week, she sent me a list of several grants that were available for families like ours who had primary insurance, but didn’t qualify for other government assistance programs. I thumbed through the five pages of information, crossing out each of the ones we wouldn’t be eligible for until I was left with a list of three. It wasn’t much, but I thought, “Heck, the worse thing they can tell me is no. And that won’t put me in any worse spot.”
Grants are available
Some of the grants required a lot of work on my end, but I figured if they could help relieve some of this financial burden from our family, it would be well worth the time spent. I poured a lot of time, energy, and tears into filling out these applications and it paid off (pun intended). We’ve received three different grants for our daughter’s therapies over the last two years. They’ve helped us add speech therapy as well as increase her sessions from monthly to weekly so that she can receive exactly what she needs, not just what we can afford. We’ve seen her grow and achieve at a faster rate because we’re able to be consistent in sending her every week.
As parents, it can be devastating when life circumstances prevent us from providing the very best care for our children. The beautiful thing is that we’re not in it alone and there are people out there who see us, recognize the struggles, and want to help. I’ve been awestruck and humbled at the out pouring of care and love our family has received through the financial assistance in these grants. They have helped us tremendously in affording the services our daughter needs in order to grow, develop, and achieve her personal best.
Resources for families
If you are in the same boat as we were, talk with your Services Coordinator to see if he or she can hook you up with a list of grants your family might be eligible for. Here are three that were helpful for us:
Raising children with special needs is no easy task. However, there are resources out there for many families. If you know of any additional foundations or grants, please share in the comments.