Accepting the word DISABILITY

Accepting Gabbie's diagnosis has been very hard on all of us, but I think it has been especially difficult for my husband. Of course we all went through all the stages of shock, disbelief, anxiety, and fear. It is not that my husband did not accept the reality of Gabbie's situation. He just has a difficult time dealing with it. Since the beginning, I have been very active in trying to find articles, books, anything that would help me understand what was going on with her. In my mind, the more I learn about it and the more I understand, the more I can help her overcome anything that she faces. And he believes that too, but he still can't research the problem, he can't even look at internet pages of other children with the same problem, but ultimately I think he just can't deal with the thought of his little baby having a difficult time in the future and not fitting in what everyone knows as "normal". There is no doubt that her development is delayed. But there is also no doubt that she has come a long way and we believe that she will be able to accomplish anything she wants in the future. She is very determined and her personality is amazing. Acceptance is a big part of this process, and we already accepted the fact that she has a problem, that her motor skills will be always delayed, that there is (finally) a diagnosis. What we are having a very difficult time now is accepting it as a "disability". What is a disability????

According to Wikipedia, "Disability is the term used to define a restriction in the ability to perform a normal activity of daily living which someone of the same age is able to perform". Well, then there is no denying, my child has a disability. But there are so many ranges of disability, that I never wanted to accept that she had one because I always thought that it was not fair to the kids that have many more serious issues than her. Going to Shriners definitely put things in perspective for us. Gabbie's problems seem so small when we see other kids that have much more serious and debilitating conditions, that I always thought that saying that my kid had a disability wouldn't be right. I am still struggling with that and yesterday I used that word for the first time, and it still didn't feel right:

Luiza, our 14 year old daughter, had an orthodontist appointment. We really enjoy this clinic. It is the same group as my kids's dentist, and we love them. They are always very nice and do a very good job with kids. When it was time to make her next appointment, I requested that it be later in the day, since I work until 3:30pm every day. Every time they tell me that it had to be after the suggested 6 weeks (for braces adjustment) because every parent wants them later because of the kids's school. We usually have to go 8 weeks between appointments because of that. Well, this time the accounting person was the one setting up my appointments and she told me that they would charge an additional $75 a month because that would extend her treatment period. It didn't make any sense to me, because she would still be seen at the clinic the same number of times, so I should be the one to care if her treatment lasted 2 and a half years instead of 2 years, not them. So, for the first time, I said "I have a kid with a disability at home, and I need to save my sick leave hours for her appointments, I am sorry. Is there a way that you can find us an appointment later in the day?" She didn't respond, then she looked at my daughter and said "So, if there is any day that you are not in school, it would be good to come earlier in the day for that appointment." So I replied "No, the problem is not her school, it is that I work and I have to use my sick leave hours with my disabled baby" (just in case she hadn't heard me the first time). She looked at me and said "Well, everyone wants the late appointments." And I said "I understand, but I do have a valid reason..." and she interrupted me and said "Everyone has their own personal reasons that they believe are valid!". I was astonished, mouth open, staring at her. I could not believe that she had just said that. And to add insult to injury, she continued: "That is why my own kids can't get braces yet, because I cannot take the time", and smiled.

What is a parent supposed to do in that situation? I could yell, scream, or as we say in portuguese "make a show". But what or where would that get me? She is just ignorant and rude. So I just became very sad and left the place with tears in my eyes. I was crying out of frustration. Frustration that this is the world my child with a disability will face. This is why my husband has had such a difficult time facing Gabbie's reality. Because he knows all the challenges that she will be facing. We are not talking about physical challenges. Those we already accepted. The real challenges in the real world will be PEOPLE. People that have no idea on how to deal with them. People that do not accept them, people that are rude, people that will hurt them on the way. How do we, parents, cope with that? How do we prevent that from happening? I am still crying about yesterday's incident. I am not ready to deal with more of these. And I thought I was ready. Ready to do whatever I could to help her. I guess my husband was not the one in denial about Gabbie's problems, I WAS.