need ideas on what to do and how to help whole family.

Marie - posted on 03/06/2010 ( 2 moms have responded )

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this maybe for more support or to talk. but i could use advice as well. 19teen years ago i went tru a simular situation with my daughter my family first wasnt accepting. with her dignosis because she was the first grandchild in 5 years but they came around. over the years me and my husband had are ups and downs tryen to have another child. finally on my birthday nine years ago we were expecting. 9 months after he was born we got the worse news he had epilepsy. but we took it in stride . both sides family okay with it. by 4 no talkin so take to doctor find out has autism .whole family so so with it because of fits and mood swings. now they are not so understanding or they just dont want to bother with it. except my dad hes been there for me thru all of this. my son just turned nine and just last year we found out he is clinicly deaf. they evaluated him agine he is still funtioning at a 4 year old level . and everyday now is gettin to be a struggle for him because speech isnt there. and im over welmed because his father dosent want to deal with it anymore. becuse its his only son. i know that sounds harsh.its not like he isnt tryen .so dose any of you out there have ideas for me or have suggestions that could help.my family the other part of my family i cant help and i cant stress over them.

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Bonnie Jean - posted on 03/06/2010

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Here is a poem that helped me in the very beginning of understanding my childrens developmental disabilities....share it with your family...And keep up the great love!

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

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Stephanie - posted on 03/06/2010

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You are a amazing Mom!! Im sorry you are going through all this. Maybe they just dont understand. I have sent books to my family so they could get a better idea of things. Its very hard for anyone that doesnt live with it daily to understand. My husband has had a hard time adjusting too. He still gets frustrated with it, but he is wonderful now. I would find a support group with people who understand what you are going through. And not to be mean, but if your family cant accept it, then move on. All your focus should be on your beautiful children and dont let them stress you out anymore. Wish I could be of more help. Keep your head and doing what you are doing! Hugs!

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