SKKY
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Thu Mar-31-05 04:07 PM
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We just had our first child 2 weeks ago, and he has Down's Syndrome... |
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Considering we're in a low risk group, and the initial tests were negative, it was quite a surprise. If anyone in this group has experience, advice, etc. they're willing to share, I'm very interested to hear anything except offers of condolences. He's absolutely gorgeous and there's absolutely nothing to be sad about. Thanks much in advance.
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SoCalDem
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Thu Mar-31-05 04:38 PM
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1. As a parent of a child with a serious birth defect, I can tell you |
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that it's very important to hook up with other parents who have dealt with some of the things you will be going through, or are currently going through them. Our son's problem was very rare, and back then (he was born in 73)"things like that" were hush-hush and we could never find anyone to help us. It was a mind-numbing whirl of doubts, fears, panic and all the rest of it.. We made it through, but a support system is invaluable to you two right now. Be prepared for your family and friends to say things that will upset you from time to time.. They probably mean well, but have no idea how insensitive they can get at times..
If you live in a large place there are probably referrals you can get from your pediatrician. I know that there is a wealth of information online and internet communities who can help you get your bearings, because there are many degrees of downs, and not all have the same complications..
I am sure you are going to do just fine, but I have walked in your shoes, and I have a feel for what you are experiencing now.. Our son was our first too, and we were blindsided as well.. It's a lot to handle the first time..Hugs to your little family :hug:
Feel free to PM me any time :) julinda
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Cymbaline68
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Thu Mar-31-05 04:43 PM
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2. My child does not have Down's |
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Edited on Thu Mar-31-05 04:50 PM by PWSMommy
but has another chromosomal disorder. Like you we were not aware of her condition until she was born (she was diagnosed at 3 months). She has low muscle tone,among other issues. Two books I can recommend to you are: Gross Motor Skills in Children with Down's Syndrome-by Patricia C. Winders Fine Motor Skills in Children with Down's Syndrome-by Maryanne Bruni
We used the Gross Motor book more than the Fine Motor but both are worth a read.
Also, look into your state's Early Childhood Intervention program.
All the best to you and your baby boy.
Edit to add-Please PM me if you want to talk. I also will echo the previous poster and recommend a support group. Sometimes it helps to be around other parents who truly know what you are going through.
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rbnyc
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Thu Mar-31-05 05:04 PM
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3. Congratulations on the birth of your child. |
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Edited on Thu Mar-31-05 05:11 PM by rbnyc
Is this your first? There's nothing like becoming a parent.
Best of luck to you.
Do you have any pictures?
EDIT: I wrote a bit about my husband's cousin, because I think she was born with Down's Syndrome--but I'm actually not sure--it may be another conditon. Anyway, she's a wonderful girl--but I didn't raise her and don't have much experience to share.
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wildeyed
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Fri Apr-01-05 01:48 PM
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Post a picture when you get a chance :)
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phylny
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Sun Apr-03-05 04:55 PM
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5. Congratulations on the birth of your baby boy! |
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I worked with children with Down Syndrome a few elementary schools and in private practice (I'm a speech-language pathologist). The most important thing you should do is make sure NO ONE creates a box they've created named "Kids with Down Syndrome" and puts him in it because there is no telling how accomplished he may become.
I worked with kids with Down Syndrome who were doing phenomenal things - reading, writing, doing math, playing sports. One high school student was heavy into drama (he was going to be an actor, he said - and he was VERY good!) and another was going to be a DJ. One loved magic tricks and played the tuba. The kids were fun, if not a little stubborn - but I'm stubborn too, so who am I to hold that against anyone? :)
Make sure you learn everything you can about early intervention and preschool special ed services in your area - your son may be eligible for good services at a free or reduced rate, if necessary.
Please feel free at any time to IM me about speech and language issues. Congrats again!
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Debbi801
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Mon Apr-04-05 09:39 AM
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6. Congrats on the birth of your son!! |
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Babies are such a wonderful joy. I'm so happy for you and your family.
Debbi
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Sabriel
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Tue Apr-05-05 08:46 AM
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7. My sister recommends this DVD for you: |
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Down Syndrome: The First 18 Months (2003)
She said it helped them a lot, and there's tons of info on it. Got them started on the right foot in many areas.
Congrats! Enjoy these special times. Sabriel
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southlandshari
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Wed Apr-06-05 03:46 PM
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Having a child is a wonderful blessing - it will change your life, in ways that will both challenge and reward you and your husband. Get ready for a wild ride!!
Regarding your son's Down's Syndrome - I am so glad to read the upbeat tone of your post. Let me tell you, as someone who has worked at one of the largest outdoor camps in the world for children with developmental disabilities and who currently works as an employment specialist for adults with special needs and skills - THE SKY IS THE LIMIT for your child. Every step is going to be extra special for your family, and I can tell you are a mother with great vision and hope for his future. He is lucky to have you!
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SW FL Dem
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Thu Apr-07-05 12:30 AM
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Give your son a hug and kiss from us.
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Midlodemocrat
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Wed May-25-05 10:52 AM
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10. Congratulations on the birth of your baby! |
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Join a support group. I don't have a child with Down's, but I regularly volunteer in special ed classrooms, and I can tell you, Down Syndrome children, wherever they fall on the spectrum are amazing gifts from God.
As a matter of fact, I won an award Friday night from the Down Syndrome Group here for working with these precious souls. I should be giving THEM the award.
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Ilsa
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Mon Jun-13-05 07:57 PM
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11. Congrats on the birth of your child! |
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I hope he is healthy as well! Just start early with him on learning. Try calling your local Early Childhood Intervention office. They help provide services and teaching and training until age three (usually) when your little one becomes eligible for special services preschool.
My son is autistic and has been in these programs in Texas and they are mostly wonderful.
And if nursing, get whatever help you can if it is needed. This can help IQ as much as 9-10 points by some estimations.
Hugs!
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tibbir
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Mon Jun-13-05 08:11 PM
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12. A friend of mine had a Downs Syndrome baby |
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Like you she was in about a low of a risk group as you can be.
Her daughter, Cindy, is about 25 now and is a delightful person. She's so positive about life. She went through intensive schooling from a very early age and now manages a job that she's very proud of. Her parents have enjoyed every minute of her.
Best wishes to you and your husband. Your child will require more intensive parenting but the rewards will be great.
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cally
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Mon Jun-20-05 12:04 PM
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13. Congratulations on your new baby |
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Sun May 05th 2024, 05:20 PM
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