Tuesday, March 27, 2012

Clueless in Feasterville

When we began the process of learning about Wolf-Hirschhorn Syndrome, I found a lot of blogs of families that had children with WHS. One of the things that helped me was seeing that these families were in a lot of ways just like us. They didn't have horns in their heads, bodies covered in tattoos, or have 3 heads. They were normal families like ours who were dealing with a very complex genetic syndrome and doing the best they could to help their children reach their full potential. There are a few of these blogs that I still follow because I find them an encouragement and a source of information.

One of these families is going through a rough time, the mom stopped her job teaching in January to stay home and care for their son, who is about the same age as Leo and has WHS, and their twin 3 year olds. She is having difficulty transitioning into the role of stay at home mom realizing just how hard it is on a daily basis. They are also missing her income. Yesterday, she posted about some of this- I could relate, I understood- I am a stay at home mom and we have been living on one income for 13 years now. It is hard, I could relate to her cry for help and I was able to offer some encouragement.

But then she posted today about ordering more kenesio tape. Kenesio tape what is that?- never heard of it. Would duct tape work because we have lots of that! Does Leo need it? She listed a bunch of therapies- Speech, OT, DT, and Vision – Ok- I know what most them are except DT. Does Leo need a DT therapist? If only I knew what it was! Her son is in a stander. Ok- she had posted about that before and I already consulted our PT and found out that Leo would probably not benefit from a stander at this point- so we are good there.

As I read some of these blogs I realize just how clueless we are! Yes, we took infant CPR and first aid, we read books about being adopted, but none of that has prepared us to be parents of a child with severe special needs. I wrote about that here.

So, to get to the point of this post. Kristen, I may know how to save money and how to survive on one income, but you are an expert on WHS and an incredible advocate for obtaining what your son needs. We are all different and have different strengths. Kristen, you will learn how to survive on one income and with more blog reading and internet surfing I may just discover that Kenesio tape and duct tape are not interchangeable.

1 comment:

  1. You are the sweetest thing ever. I'm going to email you... So we can connect. You totally rock. Because I really needed to hear it today. Thanks. Kristen