One of the unexpected but delightful perks of being part of the disability community is the people. I have met some of my closest friends through my daughter and our journey. Many of them, parents and caregivers, I now consider part of my extended family. I never would have met them if it was not for Casey.
We were very fortunate that I could stop working to stay home with Casey. We had a lot of help from nurses as well over the years. Because I could make Casey my entire world, I had time to work with our insurance company, research new treatments, educate myself on different diagnosis, etc. I learned a lot in those 10 years. Some lessons were much easier than others.
One of the most difficult lessons was learning how to find services. Some doctors were great about making sure we had support, respite, and were getting the services we needed. But not all of them were like that. Luckily, we were able to find out about our options for Casey and start working to get them covered early on.
Recently, I was talking with one of the wonderful people Casey brought into my life, and I was very caught off guard. This mom lost her son about a year before we lost Casey and I met her through a bereavement group. Her son’s needs were very complex and he needed a lot of care. Most of his life, she was a a single mom with little to no help. She found out about some services in the last couple years of his life, but for most of his life, she had no idea that there were services to help families like ours.
None of her son’s doctors made sure she knew about Medicaid waivers, or made sure he was getting the equipment and services he needed. They never wrote scripts for her to get his diapers and formula covered through insurance. They never asked her if she was getting the support she needed or any type of respite breaks. She didn’t have nursing.
This mom never complained. She just did what she had to do to love and care for her son—exactly what any of us would do for our babies. Now, when it’s too late to help her, she has become very involved with Casey’s Circle. Through some of the events and programs offered, she sees just a small glimpse of some of the services that are out there for families like ours.
Instead of being angry at her doctors for not making sure she and her son had these services, she works tirelessly to reach out to other families and make sure that they know that there is help available.
There are so many wonderful organizations like Casey’s Circle. A few are Texas Parent to Parent, UR Our Hope, Easter Seals Central Texas, and many more. It’s easy to assume that if you know about these services then surely every other parent does too.
Don’t assume. If you meet another family whose child has a disability, be sure to let them know that they are not alone, and point them to at least one organization. They may just thank you and say they do know about that. But on the other hand, you may change their life and the life of their child.
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With every passing year in the world of being a parent of a child with special health care needs, you have the day to day struggles, the fun holidays, and some surprises. Good and bad.
It's important for my family to have only supportive people in our circle. Connecting with other parents and parent groups made a huge difference. Here's how.