Jaime Loves Stuff : Le Sigh...


Le Sigh...

My daughter has special needs. A lot of them. She is brain damaged. Her right frontal and right parietal lobes were almost completely removed when she had her surgery, her entire right hemisphere is damaged and quite a bit of the left hemisphere is too. She has impulse control issues. She can go from being sweet and telling you how beautiful you are one second and in a flash start screaming in anger, without provocation. She is 7, almost 8. She is not potty trained. She only started walking two years ago, so she can't master the stairs up or down without full assistance. She can't walk on the grass, gravel, sand, well, really anything that isn't level. You have to be near by just in case she starts to lose her balance and falls and you have to be ready to catch her... because she can't break her own fall. She can't go from standing to sitting down on the ground. She has mastered those skills yet. She still has a lot of problems communicating, especially when she's upset. She is working really really hard on it. This is why programs where people are specially trained to deal with these kind of behaviors is essential, no... vital to my daughter and myself.

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See, it took a while to get the Department of Developmental Disabilities to approve an after school Day Treatment and Training program where Emma could attend after school and be around children like her and staff who are trained to handle her. I found a program I adored and it's in Emma's school district and I have been sooo happy! Emma calls it her "Happy School Program". Well, I received bad news. The "Happy School Program" is closing the doors of the location she attends due to not even being able to break even (not enough students attending) and moving the program to their main office. The problem? The main office is out of her school district. School district has vehemently stated the absolutely will not transport her or the other children to the program. They don't have to. I agree. I understand. The problem boils down to... there ISN'T another program in the school district. There are a few just outside the school district but they aren't worth the risks to send her too. I have been told send her to day care. Sure. I would love to. Do you know what it's like to talk to a day care about accepting your child with MULTIPLE special needs? The stutter. They attempt to find their way OUT of accepting your child by charging ridiculous amounts of money that I can NOT afford. Also, would you send your child somewhere that you have to FIGHT to accept your child? They don't want to change a 7 year old's pull up. They won't be able to handle her outbursts. Statistically speaking, our child are at a higher risk for abuse in these settings by other children and teacher. My daughter was abused once. It will NEVER happen to her EVER again. I do everything in my power to protect her. I will never allow another person to harm her again. She suffers every single day as it is, I will not allow her to be mentally, emotionally, physically or sexually abused by anyone.

Now this boils to down to an issue with work. I have clue what I am going to do until I find another place. Emma's therapy center is opening up a program but not until Fall. I am going to talk to my boss about cutting my hours so that I can mostly work within Emma's school hours. If my boss doesn't agree, I will have to give notice. There are plenty of postings for part time positions. We shall see...

Once again... Le Sigh...

Well how about a good laugh to end this?

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2 comments:

  1. It sucks how difficult things are when for people who are already having a tough way of it. I keep hearing from some people that you never get more than you can handle, (in relation to all the health problems that have come up for me) but I want to say..when does it end? when I finally go crazy?

    It all boils down to the same thing - we're all trying to survive and I have to hand it to you - you're doing what you and I wish things were easier for you.
    Here's hoping that your employer works with you on your hours.

    Would you be able to transport your daughter to the new location?

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  2. Oh, Jaime, poor you and Emma. :(

    This is why I hate local governments - They don't mind giving the director of banks a £6million salary increase (yep, that happened here in the UK today) but education programmes for the children who need it most? No, no. Not at all. Ugh.

    I'm crossing my fingers that your boss will understand about your hours and needing to be there for Emma until the Fall.

    ~*~*~

    Ceri

    ReplyDelete

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