I recently attended a resource fair as a vendor. Most of the families there seemed to be fairly new in their journey. Many of the things that I heard and saw took me back to the early stages in my own journey. There were a few families who were in these early stages but their child was not recently diagnosed. I was reminded that we all go through this process on our own timelines. And with our own struggles.
I was very fortunate that my husband was able to work and cover our household income so that I could stop working. I could stay home with our daughter, Casey. When she was 2, we added home health nurses. That offered me more time and opportunity to learn how the system works. Time to find resources. Time to process my emotions and to learn a lot about my daughter. I learned about this community and about myself. I was reminded this weekend that not everyone has that advantage.
There was a mom at the fair who shared her story. And it really hit home with me. Her son is 10 years old. When he was diagnosed, at 3, she was working full time. Her husband had health issues and she was not able to stop working or to take time to “figure things out.” Instead, she had to work even more to cover the expenses for her husband and her child’s medical needs.
Just now, 7 years later, her husband is doing a little better and she is able to focus a little time on learning the ropes.
We all do what we have to do. And we all have our own challenges and advantages. It doesn’t matter when you start to really get the bigger picture into focus. It just matters that you finally do. It is very overwhelming. There is so much to learn.
I cannot stress this enough: Join Parent Support Groups!
Even if you have no desire to seek emotional support. In these groups, you will be able to hear other parents share details on very important matters. Things such as Medicaid Waivers, guardianship, IEPs/ARDs, grants, and other funding organizations, camps, etc.
Before I became part of a few support groups, I took a step back. I realized that part of the emotional rollercoaster I was on was related to grief. I didn’t fully dive in and understand the grief stages. But I knew that a lot of what I was going through was my body’s way of trying to “fix” things. In a previous article, I talked about how I was obsessed with getting pregnant again before I even took Casey home. These were all forms of grief.
I listened as another mother at the resource fair talked about her struggle with grief. She sounded a lot like I once did. She used the linear grief model and talked about the progression of grief. That’s the model most of us hear of growing up.
She also mentioned that this is the first year she is going to attend the Texas Parent to Parent (TxP2P) Conference. I was really glad to hear that she is attending. I hope that she is introduced to the stages of accepting, grieving and adapting to life. And that it helps her to even better understand her own emotions.
And to know that we are all in this together.
After making the difficult decision to medicate your child, with time and on occasions, old symptoms return or new ones appear. Once again, you’re faced with what felt like an already-made decision - to medicate higher or more, or not.