I will go ahead and admit that I "borrowed" the name of this post from a blog I was reading today. The name of the blog was "EB"ing a mommy. It is about a single mother in Louisianna who has a son that has a degenerative form of Epidermolysis Bullosa. To be blunt, her son has defied the odds of many kids with his form of EB. It is deadly. It is the "deadliest disease no one has ever heard of" as described on ABC news.
I bring this up because I am a father of children with EB. Not only do two, possibly three of my kids have EB; but I do as well. I want to start by telling exactly what EB is.
Epidermolysis Bullosa is a skin condition where the skin is missing an adhesive layer (a carotine) and blistering becomes easy on the skin. There are many different forms and thank the Lord we have the milder form. But dont get me wrong, we would totally rather not have it. When you cant walk for a long time and running is really out of the question, it gets rather annoying. However annoying is better than pain.
On to the subject at hand. Being a parent of children with EB can be emotionally exhausting. When the summer months come around and we have to all meet on the couch with needles, poroxide and bandages it makes anyone want to cry. As we try to lance the blisters on our childs feet and treat them so they will not get infected. Infection is always an issue. The worst part of course is seeing our child cry because the pain is so bad. However, we are raising our kids to understand that this disease is NOT going away. With this in mind they will need to educate themselves so that they will not have to work in labor intensive jobs. So yes, we teach them that they will need to "deal with it" in order to survive the real world.
Here is where it gets rough. While we are raising our kids to value a good education, the hard fact is our child has a dissability. And a disability is protected by the law. Sometimes EB can affect them at school. We knew this so we decide to team up with our childs school to get her protected under the American Disabilities Act. By providing what the school calls a "504 Plan" our child will be protected from losing valuable education time due to her disability. It was supposed to be a simple meeting. We were to get a doctors "expert diagnosis" and bring that diagnosis and information on the disease to a meeting with the principle, the head school district nurse, the teacher and the counselor. To make a long story short, the nurse and the other staff did not feel that the DOCTORS diagnosis was serious enough to allow the 504 plan. Wow, since when does a school nurse have more intellect than a doctor? To go even further, a specialist that has been studying these types of disorders all of his carreer.
I write all of this to say that I am very dissapointed in the staff at Lewis Elementary and the way this was handled. We were told to take our child to the doctor, get a diagnosis, and meet together so we could do what was appropriate for our childs future. Instead, the principal, the counselor, the P.E. teacher and the school nurse made the determination that our child did not need the protection of the 504 plan that is stated in the Americans Disability Act. She has a disability, it is a known disability, it was diagnosed as a disability...where is the problem here?
I will continue to protect my child and see that she and her sister get the education they need. I will also let the school system know that this is treatment that mirrors discrimination. I would welcome any and all feedback.
