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Roo’s Story

March 1, 2009

winter-08-09-048I read this article this morning in the Huffington Post and decided it was time I shared the story of my daughter Roo.

Roo was born in Carlsbad, New Mexico in 1998. I had a rough pregnancy with lots of stress but she came out a beautiful 7 lb, 13 oz girl. Iwas a very happy mom. I found out quite quick I couldn’t breast feed, so I had to turn to formula. Our first few months on formula well weren’t the best. Roo couldn’t keep it down. She literally could vomit across the room. I know not a nice picture. At age 2 months thanks to a wonderful nurse practitioner there in Carlsbad, Roo was diagnosed as protein intolerant. She was put on a special formula (Neutramagin).

She was growing healthy and strong, proteins were kept at bay so her digestive system would have a chance to grow and develop. She was a strong healthy little girl. When I took her for her 18 mo baby check up. By this time we had moved to Toronto, Canada and her doctor decided we would put off her vaccine because of the makeup of the vaccine and Roo’s body inability to handle it.

Well by age 4  Roo was getting ready to go to school and needed that vaccine or we couldn’t register by this time doctors thought her digestive system should handle it. Well lets just say within weeks Roo had many of the symptoms of autism, or sensory disorders.

Here is just some of the things that Roo experienced shortly after vaccination:

  • insomnia ( Roo was a great sleeper when she was little, now she wakes up at least once a night, sometimes more, until the last 6 months it was often multiple times a night).
  • sensory integration issues ( bright lights and the feel of certain textures on her skin). Getting her to wear socks is still an issue. As well Rachel has a problem with bright artificial light. Can you say sunglasses inside?
  • misunderstanding social cues
  • screaming fits , I can remember being at church and having to take my daughter out of the children’s program many a Sunday because of behavioral issues, I can remember one Sunday quite well. Roo was in the midst of a fit and I was holding her and I can remember the looks of some of the other parents. Church and Roo so far have not been a great experience. Roo often cant still for an hour, she tilts the chair she sits on, etc, and unless you have trained children’s leaders experienced with special kids it is more then a challenge, it is a nightmare for both child and parent.  Too be honest I became more and more discouraged after attending church then encouraged.
  • food sensitivities ( I think these are part of the original diagnosis)
  • loss of  small eye hand coordination. Rachel had great small finger control for a young child. Ie she has using scissors and cutting well, holding a crayon well etc.  She lost that, holding a pencil became a chore, printing well lets just say Roo still does not write in cursive and her printing is what you would see in grades 1 or 2. For her printing is a real chore. She would rather tell you the answer.
  • oral fixations. Roo for the longest time would chew on her clothes. The ends of her sleeves would quickly become a ruined mess. Can you see why most of her tops came from Value Village, or thrift stores. We went thorough alot of them!

As she got into school she had trouble from grade one on. The third week of school I had the teacher tell me my daughter was ” hell to teach” and that is a direct quote.  I quit my job when Roo was in grade 1 and took part time employment so I could be more actively there for my daughter as we tried to get a proper diagnosis.

The full diagnosis didn’t come till grade 2. Roo is very smart, tests at the 97% level which mean she borders on gifted, has an LD and walks a fine line between Asperger’s Syndrome and ADHD. Depending on the day you will get a differing diagnosis.

Roo at school until this year, had an EA for grades 3 and 4 and was integrated for most part in the regular classroom. This year when we moved to Nova Scotia she was not given an EA, and is in a split class ( gr 4 and 5). She has only been accommodated for her LD, nothing else. To this date I have yet to see an IEP in place for her. She is struggling with social issues that include bullying and isloation. She is also becoming depressed so I worry alot as she approaches the teen years. Special kids are known to have higher rates for teen suicide, dropping out and drug use.

If all of this can be linked back to one needle, maybe just maybe we can save a child from having to go through some of the hardships that Roo faces or faced. Maybe we do need to ask more questions of our doctors. I don’t know the solutions, as a mother I simply know that for me, common sense tells me I was wrong to let my daughter have that needle. But then again hindsight is twenty twenty they say.

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