U.S. CitiesCity-Data Forum Index
Go Back   City-Data Forum > General Forums > Parenting > Special Needs Children
 [Register]
Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
View detailed profile (Advanced) or search
site with Google Custom Search

Search Forums  (Advanced)
 
 
Old 10-11-2009, 02:44 PM
 
Location: NE Oklahoma
1,036 posts, read 2,652,158 times
Reputation: 1081

Advertisements

My husband's niece and her husband just had a baby last week. The Pediatrician wanted to test the baby for Down's "because his eyes are slanted"??? The results takes 2 weeks to get back and of course she is just a nervous wreck.
They are both in their early 20's with her first child (not his) being a normal birth even though with both of them she had to have a Cesarean.
The problem with this pregnancy was she kept bleeding and trying to go into pre-term labor. They had her on bedrest and medications to stop the labor for 2 months at least..maybe 3.
If he has Down's then what? Don't they recommend early therapy? What else? Obviously I don't know much about Down's but I do know it doesn't have to be the train wreck it ends up with some children and families. I also know there are many different functioning levels, depending on severity and therapy. Any advice besides trying to keep her calm during the wait?
She did get to breastfeed him some yesterday but they are still in the hospital because she keeps getting headaches everytime she sits up. I don't know how long they are going to be there..but from the sounds of her health it will be a few days.
Quick reply to this message

 
Old 10-11-2009, 03:33 PM
 
49 posts, read 157,916 times
Reputation: 34
As a mother of a little boy with Down Syndrome, I can tell you that it's a bend in the road, not the end of the road. Definitely harder in some ways but also very rewarding.

There are many good resources on the Net. One encouraging one is Einstein-Syndrome.com. A couple of really inspiring individuals are Sujeet Desai and Karen Gaffney.

This is a
beautiful video:
Quick reply to this message
 
Old 10-11-2009, 05:32 PM
 
Location: west of Milwaukee, Wi
105 posts, read 308,123 times
Reputation: 127
Well.....just like that beautiful video says..."God doesn't make mistakes"....and having a Down's Syndrome child can be a true blessing.


When my son was born, the doctor knew immediately....I know they test for it, but there are so many signs to identify this, with only one being the almond shaped eyes. I also remember we were devastated. It just takes time and knowledge to reconcile yourself to a slightly different future. But please tell them to take heart...it is a beautiful future.

Our son is 24 years old. Our family, and so many who know him...feel that he is truly a blessing...he is kind, funny, polite, friendly, and very caring.
He doesn't have a mean bone in his body; he never lies, he cares about others; (and I don't have to worry about the typical things - he doesn't smoke, drink, drive, go out and party.....

He really is all about LOVE.

To answer your question about what happens:
He started physical therapy at 6 weeks; school at 3 years; used sign language until he was able to use speech. He went to school until he was 21, then immediately moved into working at a sheltered workshop when he graduated. He is totally capable and can take care of his own needs, and could be in a group home, (but we really enjoy his company, and he is content at home)

It wasn't easy, and I have learned all about PATIENCE, but I've also experienced unconditional love. We would do it all over again if we were given the choice....we really do feel like we were the lucky ones!

There are lots of resources but here is one main source for you to share with them. National Down Syndrome Society - Welcome to NDSS

Good luck to you and your family....
Quick reply to this message
 
Old 10-12-2009, 09:29 AM
 
Location: west of Milwaukee, Wi
105 posts, read 308,123 times
Reputation: 127
Default a poem

these two writings helped me when my son was born...perhaps they can help you, too.

A Trip to Holland

By Emily Perl Kingsley

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 Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It's all very exciting. After several 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 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 a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And 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 experience will never, ever, ever, go away. 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.



God Chooses A Mom For A Disabled Child
By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, Nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over the Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstong, Beth; son; patron saint, Matthew.
"Forrest, Marjorie; daughter; patron saint, Cecelia.
"Rudlege, Carrie; twins; patron saint…give her Gerald. He’s used to profanity."
Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She’s so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel"
"But has she patience?" Ask the angel.
"I don’t want her to have too much patience or she will drown in self-pity and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today. She has that feeling of self and independence. She’ll have to teach the child to live in her world and that’s not going to be easy."
"But, Lord, I don’t think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness"
The Angel gasps. "Selfishness? Is that a virtue?"
God nods. "If she can’t separate herself from the child occasionally, she’ll never survive. Yes, there is a woman I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word.’ She will never consider a ‘step’ ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see as few people ever see my creations.
"I will permit her to see clearly the things I see --- ignorance, cruelty, prejudice --- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.."
"And what about her patron saint?" asks the angel, his pen poised in mid air.
God smiles. "A mirror will suffice."
Quick reply to this message
 
Old 10-12-2009, 10:22 PM
 
Location: Middle America
36,598 posts, read 41,876,404 times
Reputation: 50396
One of my students is a teenager with Down Syndrome. He is quite possibly the most purely kind, good natured, unselfish, and caring students I've ever worked with. When I started working with him, I bought a book called Gifts, that is a collection of short first-person essays by mothers of children with Down Syndrome. It doesn't sugar coat...the essays are painfully honest about the challenges as well as the joy. It's a very enlightening, very moving book, and I recommend it wholeheartedly to anyone with a loved one with DS.

Gifts: A Book about How Children with Down Syndrome Enrich Our Lives
Quick reply to this message
 
Old 10-13-2009, 11:22 PM
 
Location: Hampton Cove, AL
692 posts, read 1,310,774 times
Reputation: 244
Thank you catfeathers, I had been given the trip to Holland years ago, however I had never seen Erma, it was very touching-I had tears...even if I feel that I don't always live up to it.

(((((HUGS)))))

And to think, I almost didn't read this thread since my son has CP, God works in mysterious ways.
Quick reply to this message
 
Old 10-13-2009, 11:33 PM
 
21,483 posts, read 13,680,648 times
Reputation: 5948
Like Sarah Palin says, "the world would be a better place if more trigs were born." Some have criticised her for having her handicapped son but it is they who are handicapped.
Quick reply to this message
 
Old 10-14-2009, 10:38 AM
 
55 posts, read 202,721 times
Reputation: 36
Hi! Lot's of wisdom here! I never realized that city-data forum had all these other sections. Discovere this section just now!
I am a mother of a 21 month old angel with Ds. He is our firstborn. It was a shock to me when he was born, we had not done any testing. I was 30 when he was born. I imagined the worst, however deep down I knew that God did not make mistakes and that he would not bring me misery.
Now cut to 21 months after that doomsday ( or so I thought). I can't imagine life without him. I can go on and on but I want to suggest what helped me most was talking to other parents with Ds kids online. I was not ready to face people or families with Ds for a lot longer, but online I was able to ask all the questions and get to really know the reality. I asked EVERYTHING, EVERYTHING. I didn't hold back.
The site I found at the crucial time and still visit regularly cause we are like family is " Uno Mas Down Syndrome Online: Down Syndrome Support Group Online
You might suggest that she go there and ask away. Everything is going to be alright! She has been blessed.
We also had to test our son when he was born and actually my husband didn't want to test becuase he felt that whether our son had Ds or not in time we would know and we just had to trust God that Noah was healthy, Ds or not.
I didn't share his idea, I needed to know, even though I really knew the second they placed him on me after birth.
So we didn't have confirmation till about 2 months after he was born! We took the test and they kept delaying the results it was weird and nervewracking.
Please also feel free to hav her email me if she ever wants to talk: jjeska25@yahoo.com. I would be more than happy to share anything, pics, stories, reality.
Noah is super healthy, he is very active, he is so smart!!!! He signs dozens of words, he learns whatever we teach him usually after showing him only once. Wow is all I can say about him, WOW!!!!
Quick reply to this message
 
Old 10-14-2009, 10:44 AM
 
Location: west of Milwaukee, Wi
105 posts, read 308,123 times
Reputation: 127
Quote:
Originally Posted by tammie2 View Post
Thank you catfeathers, I had been given the trip to Holland years ago, however I had never seen Erma, it was very touching-I had tears...even if I feel that I don't always live up to it.

(((((HUGS)))))

And to think, I almost didn't read this thread since my son has CP, God works in mysterious ways.
Doesn't He??
You're welcome....I can't count how many times I've read this over the years..in good times, and during those times when it was most difficult...and it still brings a tear (or two) to my eye!

Best wishes...
Quick reply to this message
 
Old 11-26-2009, 12:21 PM
 
109 posts, read 319,857 times
Reputation: 74
It will take months (or even years) before the truth is known.

I was told that one of my twins had slanted eyes and was risk of having down's syndrome. Because of the risk of losing both babies, the hospital refused to do the amnio-test. So at 36 weeks, I had a C-section. One baby was over 5 pounds and went home when I did. The smaller one, suspected of the downs syndrome, stayed in NICU for two weeks. He didn't gain weight until I could nurse him around the clock. He is now 8, a normal weight and height. He has a vision problem that affects his depth perception and some speech issues. But NOT as major as the down's syndrome as the doctors told us when I was pregnant.

BTW, I was born a premmie baby in 1970 and they told my mom I would not live past the age of 5 or 6. I just turned 39 a few days ago. Take it all with a grain of salt. Even very experienced professionals can make mistakes in judgment.

Apparently for us the slanted eyes (with the ultrasound view) are genetic trait and not a sign of a disability.

So just be happy, accepting and loving no matter what, and enjoy your grandchild as an individual. Support and love your daughter no matter what the outcome. You will be rewarded with unending love.

Last edited by leavingGA; 11-26-2009 at 12:30 PM..
Quick reply to this message
Please register to post and access all features of our very popular forum. It is free and quick. Over $68,000 in prizes has already been given out to active posters on our forum. Additional giveaways are planned.

Detailed information about all U.S. cities, counties, and zip codes on our site: City-data.com.


 
Please update this thread with any new information or opinions. This open thread is still read by thousands of people, so we encourage all additional points of view.

Quick Reply
Message:
Over $104,000 in prizes was already given out to active posters on our forum and additional giveaways are planned!

Go Back   City-Data Forum > General Forums > Parenting > Special Needs Children
Similar Threads
Follow City-Data.com founder on our Forum or

All times are GMT -6.

2005-2019, Advameg, Inc. · Please obey Forum Rules · Terms of Use and Privacy Policy · Bug Bounty

City-Data.com - Archive 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, 20, 21, 22, 23, 24, 25, 26, 27, 28, 29, 30, 31, 32, 33, 34, 35 - Top