Monday, March 10, 2008

Learning to be an Advocate

When the word advocate is brought up I automatically think of being a Hero. It is hard to be an advocate for a child with special needs. I found it most frustrating to be a good advocate for my daughter because of the range of troubles that children with 1p36 deletion suffer from. I have read all the medical mumbo jumbo and maping about 1p36 deletion. None of that information offered a solution in what I should do next or what I should expect next. I have read stories of children whose disability have taken the very joy out of theirs' and their parents lives. Stories that make my heart ache and tears spill from my eyes for those who aren't nearly as blessed as I. It makes me feel guilty for questioning God about his intentions and acting like such a spoiled brat when I felt like I was being ripped off when it came to the parenting experience. My child is blessed because inspite of her disability she thrives and grows stronger everyday. She has the ability to learn new things and the express herself freely. I didn't always see it like that though. When Tru would scream and have terrible fits I would cower away and try to stay away. I can only imagine what it would be like to not be able to say what I want and need. Tru's patience is a divine gift she has. She patiently tries to tell me what she wants through a series of babbles and whoops. I am trying to empower her with sign language and the use of pictures to help her communicate. And like everything else we do, it is slow to go and small steps of progress. I have heard her say many words, but she won't always use them in proper context. The one I hear the most and will never get tired of hearing is, "Momma". Every once in awhile she'll put two words together and she'll say, " I eat! ". But it's those times when she screams that I feel as though I have failed. It's not so bad as it use to be, but I remember feeling so helpless and like I didn't deserve to be a mother because I couldn't teach her to communicate her feelings. I am normally a happy person, but there would be times when I felt so sad a sorry for myself. It didn't help matters when I went to professionals for advice on what to do to help my daughter. Everyone seemed to take the same position on the matter, "There is no way of telling how severe the effects with be." I was perplexed by the simple fact that they could give what she had a name but couldn't tell me how it would affect her daily life. What made things even harder was I didn't have anyone who could relate to how I felt and the troubles I face. I spent days in front of my computer trying to find others in my situation. When I finally found a few that could relate because their child either had a chromosome deletion or a special need, I was humbled. Words can't even express the relief I had when I realized I wasn't alone. The one thing I can say that all parents have is the ability to advocate for their child. I have done everything humanly possible for my daughter. I have taken her to so many doctors I can't even remember all their names. I have put my entire life on hold to ensure Tru gets what she needs. I have had to put my own personal dreams and life at bay to concentrate on her. I took time off from work and school to ensure she is getting the best help available. That's what being an advocate is all about. You can't be selfish or negative. Guess what people, that's also what being a parent is all about. I still feel bad when I can't understand what Tru wants, and I still want to cry when she struggles with something new. But I don't feel sorry for myself or for my little girl. Being an advocate means to fight for their right to live a meaningful and purposeful life. It has taken me 2 long years to come to that reality and the only thing I am sorry for anymore is the fact that I let my pride get in the way. If you have a child with disabilities I encourge you to seek outside help. I will try my best to provide links to sites that can help. Remember, you're not in this alone, there are many scared and worried parents out there just like you.

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