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Name: angelicapaige
[ Original Post ]
I have a 6 year old client that lives with me. She is a beautiful little girl and I adore her. She has hydrocephalus and autism. When I brought her home at 3 months old her prognosis was extremely grim. Basically they said "This baby has no brain, she'll be a vegetable". Well they couldn't have been more wrong. I believe her autism is more of a problem than the MR.
She is doing amazing things, however the big problem right now is getting her up in the morning for school. She screams and cries every day. I have tried waking her slowly, early, with music, with snuggles...regardless of what I do it is a struggle. She's fine once she is dressed and in her wheelchair and she's happy to get on the bus. But, I'm sick to my stomach and close to tears...any thoughts or suggestions? I'm all ears!
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Name: Angela | Date: Jul 6th, 2011 3:41 AM
I cannot begin to imagine what you are going through. My suggestion would be to understand that you are her rock right now and forever. Without you, where would she be? Understanding your role and that she cannot help most of her behavior will see you through. If you are a religious person, pray for God's will and strength. I have no suggestions with how to make it easier for her or how to make it all stop, but I was once told that you can do nothing about what others do, you can only control you. Take the attitude that it is not going to bother you today and start from there. I can only imagine how difficult it is for you and I will pray for you. Every day it may seem like it is getting more unbearable, but it is actually going to get a little easier if you allow it. My daughter had a pretty grim prognosis but not as grim as your little girl. She was diagnosed with infantile spasms after she started having seizures at ten months of age. I have not been battling as long or as hard as you have, but her special needs require all of me. She never sleeps more than an hour day or night because of the seizures and she was a happy healthy normal little girl before this all started. There is no cause and no cure, it is something that just happens. Her demeanor went from happy and all smiles to that of a child with colic. We are now battling intestinal problems, reflux, and seizures. She is still my life, but sometimes I feel like running away for a few hours and laying down and saying, here, let me rest, but she will have no one but me. It is my fault because I am now a single mother because her father could not handle a child with disabilities. She only knows me, therefore, she does not want anyone but me. The way I get through the day is to think about how lucky I am that I have her and how lucky she is to have me. When she wakes up screaming after a seizure in the middle of the night and won't stop for hours, I hold true to songs and the thought that she trusts me so much to take such good care of her. I thought I would go crazy at first, but then I started researching and discovered how lucky I was that she is as perfect as she is. I thought that I could handle no more and I prayed and God took over and gave me more strength. I though that I could crawl up in a corner and die after her father abandoned us and I was left alone to raise this wonderful little girl, but then I realized how lucky I was to find out sooner rather than later that he was unhappy with me and that I can finally move on. I thought that the screaming would never end... but there are good times that she smiles and laughs again... and the doctor's said that she would no longer smile or laugh or crawl or walk... she does the army crawl now and I am so proud. I just think of how she feels and put my own feelings aside. I know that she is scared and doesn't know what is going on, so I give her the comfort she needs and she is better. The screaming stops, and I can finally rest again. The way I see it is that life is short enough and I will get enough rest after I am gone. I will be there for her while I am here. 

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