Our daughter, Brooke, was diagnosed with a rare genetic disorder called Cohen Syndrome in May of 2013. I can’t remember exactly when we were told about Raising Special Kids, but I do know it was very early– about the time we received our daughter’s diagnosis.
I remember talking with RSK and speaking with a very helpful person who gave me a lot of information. We were at the very beginning of our journey. After “the dust settled” I actually started taking more time to read all of the material and resource information that was being provided by RSK. It has been so beneficial to our family and a huge blessing. Not only has RSK guided us and given us information to help with our daughter’s care, like IEPs for school, understanding health insurance, changes in policies in AZ, programs that are available, etc.
RSK has been such a great support in helping us find answers. We know who to call if we are feeling overwhelmed, and know that RSK not only understands logically how to help us (which is obviously important), but also understands compassionately how to help us (which is also a necessity as the challenges we face almost daily can really add up and take a toll on you if you don’t have that compassionate support).
RSK has also given me an opportunity to give back. One challenge for families like mine who are sometimes overwhelmed with caring for their child needs is self-absorption. It is very easy to get so focused on your daily struggles that you lose sight of what others are going through. At RSK I’ve been given an opportunity to receive training to become a Parent Leader which has prepared me to help other families and be there for them as a coach and mentor, or for whatever they need. I’ve also been given opportunities to attend conferences and give presentations in meetings for families with children of special healthcare needs. It gives me an opportunity to not only share our story, but to make an impact for ALL families in the special needs community, not just us. It has also given me insight into the programs or resources that families need and how to meet and overcome the challenges we face. Often, it seems like families have to fight for services for their child, and they don’t always have support to learn how to advocate for them (the difference being when advocating you are working with, not against, the program or professional to come to a solution that benefits everyone).
I feel very fortunate to have the chance to collaborate and to work alongside people to accomplish their goals and objectives. Being a Parent Leader means I get to learn about self-advocacy and how working TOGETHER we can find solutions that benefit everyone. All of this has been made possible by Raising Special Kids. They are an amazing resource that truly understands the journey of a family who is raising a child with special healthcare needs.
One of the things I really appreciate about RSK is how they are always there. At the beginning of our journey they were there in the background as we were overwhelmed by all we were learning and doing for our newly diagnosed daughter. As time went on and I wanted to learn more, receive more and do more, RSK was there and is still there, helping me be a better advocate for our daughter and for other families as well. It’s an invaluable gift and one that I will be forever grateful for.