Need lots of positive vibes for 5 yr old grandson

[pammyjean]

Hi Linda,
Big (((Hugs))) for Matthew, a very special little boy. Special thoughts and hopes for your daughter Missy, I dont know much about autism, but I know how upset you and your daughter must be.

When my little grandaughter was born, she had a heart murmer, cleft palate ......I sobbed thinking why us... this happens to other people...... then the news came that she might have some sort of syndrome.........she was about two months old, and Williams Syndrome was diagnosed......... Our world seem to fall apart........ Molly Ann is now 4 years old....... she goes to special school... she is a little ray of sunshine. She has loads of heatlh issues including narrowing of the aorta, leaky heart valve, dental problems, hearing problems, plus learning problems.
On the Williams syndrome site....I read this story..... Sorry its long......but it helped me...........

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 guidebooks and make your wonderful vacation plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very, 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 flight attendant 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 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 guidebooks. 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 awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills. 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 go away, because the loss of that dream is a 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.


Love and cuddles Pammyjean and Saska

 

[atlasmom911]

Thank you everyone. It is so nice to be able to come here and know you will have all of the support you need. Matthew is really doing alot better. He has his good days and bad days but more good lately. He is starting to talk more. He is very good with numbers. They still can't take him out where there is alot of people. He seems to get very upset when there are alot of people around him. The other day he was eating some ice cream and I asked him what he was eating and he said ice cream. He loves to play games on the computer and he is very good. Thanks again for all of your support...Linda

 

[Biff]

Pam, thank you for that lovely story. I am sure it helped Linda a lot

My oldest grandson is 12 now. When he was 3 years old, he was diagnosed with type 1 diabetes. He will be on insulin injections for the rest of his life unless a cure is found. Nowadays, he injects himself as easily as brushing his teeth. But the first few months were hard for all the family. I spent a long time crying "Why him?". But I had to be strong for him and his parents. Holding back my own emotions, I would talk to them for hours trying to reassure, and pointing out that diabetes in a manageable condition. Although very serious, if managed correctly, it is not life threatening. His condition could have been something much worse. I said these things to them so often, that they finally sunk in to my thick brain. We were the lucky ones, so many parents are told their children have terminal illnesses, thank God that wasn't us.

As Indy said, we all really do care (((Hugs)))

 

[pammyjean]

Hi Linda,
So Glad you are having mainly good days now..... your grandson sounds adorable.... give him loads of kisses and cuddles from me....... A grandma's love for her grandkids........ is soooooo strong...... little Molly Ann also has blonde hair and blue eyes.... I hope the story helped..... it helped me, when I was at my lowest ebb..... Some people are so ignorant....and stare at little Molly Ann..... Yet on the Williams Syndrome site.... they say if everyone in the world had a little bit of Williams Syndrome there would be no wars..... no hate.... only love.

Babara....... Yikes my dad was a diabetic....and had to have injections..... he used to push us out of the room, when we were kids.... I have a thing about injections now...... and feel all faint....even when I see them on the TV. Your grandson...... sounds a brave little fella..... give him a cuddle from me....


Love Pammyjean and Saska xxx

 

[Beau's Mommy]

Hi, Linda! My son was diagnosed with a mild form of autism, Asperger syndrome, when he was 2. So I know firsthand what a blow it is to hear that kind of news. I remember being so overwhelmed and wondering why I didn't see it before. Of course I knew there had to be something going on with him, but I guess I just assumed it was something that I was doing wrong and the doctors would tell he what to do to cure him. But when it turned out to something that was uncurable, I was devastated for a while. And though I was relieved that it wasn't anything that I had done, I was left with a sense of helplessness. But we have a wonderful doctor who has always been willing to hear listen to us and spend the time necessary to get us back on the right track when we seem to wander off a bit.

Braden is now 8 and has come a long way from where he started. He has had quite a few behavioral issues at school this year, but academically he is doing great.

Well, I could go on and on all day about this topic. Just know I am thinking about you and your family. And I firmly believe that God only gives these precious, very special babies to special people who he knows can handle it. Good luck!

 

[atlasmom911]

Thanks everyone. Matthew is doing real well in school. He is so lucky to have a wonderful mommy and daddy.

 

[Chiefsmom]

It's tough news to receive initially!!!! I do understand!!! I work with many autistic children up through adolescents within my job!!!! I have to tell you.... the more you're around them; they're personality really takes over!!! Patience is a virtue! But support is a greater thing!!!
I know he's still young but... I'm a vocational instructor and my most recent autistic client was just placed working at a big sports and concert arena in our area! He's ecstatic!!! He just assisted with the opening of a Taylor Hicks concert in our area! And is doing wonderful! He also had a dream of being a DJ! I hooked him up with the local radio station just to shadow! He ended up learning all the sound clips; and now runs a few hour spot assisting with commercial transitioning! Take advantage of the supports in your area!!! They can be of huge help! I've had many wonderful success stories with autistic consumers!!!
If you have any questions... don't hesitate to ask!!!