May 15, 2023 | By: Laura J. Warren, Texas Parent to Parent
Categories: Family Support
It’s flattering to be told you are an exceptional parent and to be invited to join a committee or a board of directors. The first time I was invited to join one of these groups, I immediately agreed. I felt flattered to be invited. It was validating to be recognized as someone who could meaningfully contribute. It also felt as if they recognized I was an exceptional parent.
However, it slowly dawned on me that all the parents I knew who had kids with disabilities were just as involved with their child as I was. We had to be because they needed so much. So, the next time I was singled out as exceptional, I challenged it. Many of us are.
The next time I was asked to join a group, the invite was to join a Board of Directors for a nonprofit organization. Again, I jumped at it. At every meeting, I was asked what they should do to help families. Every time, I said parents need respite care. Everyone tells parents of kids with disabilities to get respite care. However, unless you have a Medicaid Waiver, you can’t find anyone to pay for respite care or workers to do it for you. I was finally told that “there was no money in respite care.” I was surprised at this concern, given that it was a nonprofit organization.
Not all committees are created equally. After 36 years in this world of disability, I have learned a few things about serving on committees.
My favorite committees were the ones where the parents led the group. The Children’s Policy Council* was my all-time favorite – I learned so much there and we saw results. We made recommendations to the Legislature and State Agencies and in each Legislative session, some of our proposals were accepted. This website was one of those recommendations. Now, that is a great feeling!
*The Children’s Policy Council has changed its name to Policy Council for Children and Families, in case you want to look at it for open positions.
Working from home brings priorities into focus. I am a caregiver first and everything else second.
Categories: Family Support
Even if it has been a long time, it’s important for caregivers to start taking care of themselves. Catching up on my healthcare and doing things just for me has made me happier and healthier.
Categories: Family Support
Who was it that said “Nothing is constant except change?” I wish that person could tell those of us who don’t love change, even good change, how to manage it.
Categories: Family Support