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    Posted July 2, 2014 by
    heathe51803
    Location
    Seekonk, Massachusetts
    Assignment
    Assignment
    This iReport is part of an assignment:
    Raising a special needs child

    The Hidden Cost of Raising a Special Needs Child

     
    When my son Andrew, who is profoundly disabled, was in the first grade, he was admitted to the hospital because he couldn't maintain a stable blood pressure due to his current medications. I was pregnant with our third child. During his prior preschool year, he had suffered two seizures lasting over thirty minutes, both times he had stopped breathing, one he slipped into a coma. Our team advised us to send Andrew to a residential school, where his medical and educational needs could be met. At that time, there was no state funding to provide any in home care, other than some speech therapies, there was very little that was covered by insurance. The week that Andrew entered his first residential placement, my marriage suffered an irretrievable breakdown. During that first placement, which lasted a year and a half, Andrew became failure to thrive, the program was medically negligent, and, finally, he was physically abused. Although I filed and his pediatrician filed against the program, the investigation was never completed, because Andrew is completely nonverbal, so no case could be made. Although my son was bruised so badly that he could not chew food or close his mouth for three days, it took months of fighting to have him removed to another program, which is 350 miles away from me. He has been there for two years.
    Many people talk about the trials and joys of raising children with special needs. I miss both the trials and the joys. Andrew has been medically cleared to come home. Many new programs in the state, including new insurance laws, would give us the support possible to make that happen. His brother and sister and I miss him every day. 350 miles can sometimes seem like 3,500. Unfortunately, it has become a long and arduous fight to bring my son back home to his family. The hidden cost of raising a child with special needs is how painful it is, each and every day, especially if you're separated from that child. I'm still the one who is called when there's a medical question, or to make an educational decisions, but I don't get to be a part of watching my son grow, seeing him learn new things, cuddling with him on late mornings, or watching how he interacts with his siblings.
    If I could give any advice to parents of children with special needs, or parents of any children, it is to be grateful of the time that you have, and try to enjoy it. Every rare minute that I have with Andrew is a treasure, it doesn't matter how he behaves, it only matters that we're together. It's the same for my other children.

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