“Dedicated To the Memory of Nicholas Fox”
I started a support group for parents of children with brain injuries almost two years ago. I desperately needed that connection with others who could understand and relate to this journey. There is a comfort that can only be found when another parent says “me too”. On a journey where you often feel so alone and like no one “gets it”, it is nice to have one place where others can understand and help. Some of the things I have learned are:
- Support groups have helped me learn about services that I otherwise never would have heard about. Doctors will tell you about the physical therapy, occupational therapy and speech therapy, however, there are so many other options in addition to those. One service that I learned about through my support group was aquatics therapy. Once I researched it, I quickly found a place for Isabella to get “swimming therapy”. She made huge strides with this therapy.
- Support groups have taught me about alternative treatments that I otherwise never would have heard about. Prior to my support group I didn’t know about Omega 3s for brain health. I had never heard of taking B2 for migraines. I researched them both and then got approval from Isabella’s doctor. Both have helped her.
- Support groups have taught me about “ins and outs” of insurance. Let’s face it, insurance companies aren’t going to offer to pay for something if they don’t have to. Often time’s things like transport strollers, car seats, formula and other medical items can be covered by insurance. It is about knowing what to ask from medical providers and how to submit it to insurance.
- Support groups have taught me about financial resources that can help offset the cost of certain items that are not covered by insurance. Prior to my support group I didn’t know about scholarships, organizations, grants and projects that will help pay or provide a service needed. When I was raising money for Isabella’s Hyperbaric Oxygen Chamber, I connected with quite a few that were able to help meet our goal.
- The most important thing that support groups have taught me is that I am not alone on this journey. I have other parents who “get it”. I can ask questions and get opinions knowing their answers are from the heart because they too are walking this journey. Having someone else say “me too”, the power of those words I can’t even begin to explain.
There are so many kinds of support groups out there. You can join one that you can physically go to or there are many online. It’s important to find the right support group for you. No two groups are alike. If you find a good one group support, you will wonder how you ever made it on this journey without them.
Guest Blogger, Kristin Olliney-Apruzzese, is the mother of 8-year-old Isabella, who suffered sudden acute encephalitis when she was just 4. Kristin’s bi-monthly blog, Mommy of a Miracle, talks about the trials and joys of raising a brain injury survivor.
Legal Statement: The information contained in this blog does not reflect the specific views of BIA-MA. This blog is published for informational purposes only. BIA-MA is not providing medical, legal or other professional advice with its publication.