Newborn with Down Syndrome; Mother needs resources

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GAMZu ↓

Wed, Dec 26 2007, 10:22 am

Someone I know just had a baby, and she's totally clueless about anything Down-Syndrome related.
She needs all the resources and support she can get.
Can anyone recommend books or sites with GOOD information?
Does anyone know parents who are willing to get a phone call to share experiences and give support? The father is having a hard time coming to terms with it.
They were totally lost, didn't even know the basics until the baby was born.

Thank you everyone!

downsyndrome ↓

Wed, Dec 26 2007, 10:26 am

Can I offer myself, Gamzu? All those questions you have posed have been answered by my husband and myself countless times. We counsel new parents regularly and I also have my magazine "Down Syndrome Amongst Us' as reading material. If you would like my telephone number for these new parents to call me, please pm me.
Hatzlahcha and don't forget to say "MAzel Tov!" to these new parents!

Squash ↓

Wed, Dec 26 2007, 10:27 am

ds, I just pmed gamzu telling her to contact you.

tovasmom

Wed, Dec 26 2007, 10:40 am

ds's magazine is very helpful, although I do not think she has published for a while. I have a daughter with down's syndrome who just turned 4 and she is a bracha and I can already see her positive impact on those around her. At first, it is understandable that the parents (fathers seem to be worse at this) will have trouble because it is basically a situation where you need to deal with the loss of an expectation of what your child's life will be like. When my daughter was born I was helped alot by people who tried to counsel and made me realize that Hashem's salvation in this case is the realization that we have to change our expectations and view what we see as a negative in a positive way. As far as help, it is very important for your friend to the child evaluated and hooked into whatever early intervention services which are available in the place that she lives -- Bi'Hatzlacha

shopaholic

Wed, Dec 26 2007, 10:42 am

tell her to check out the blog www.ourmendele.blogspot.com

This is a young couple who's firstborn is downsyndrome. He is now about a year old & doing great & they have some resources there or you can email them. I'm sure they'd love to help.

↑ GAMZu ↓

Wed, Dec 26 2007, 11:07 am

Thank you- D S, I will PM you- I'm running now.
She doesn't have internet, so I will print some things out. The blog is great- I'll ask the owner if I can print some entries that will give the mother chizuk.

Anyone else have inspirational stories about such children? Success as adults, as in jobs, etc...

B"H, B"H the baby doesn't have ANY health issues! No heart problems, no nursing issues... the mother didn't realize how amazing this was because she didn't know to expect these issues. She was surprised that I know about this.

Thank you, keep it coming!

yedidya's mom ↓

Wed, Dec 26 2007, 12:48 pm

gamzu you can PM me as well- I'd love to help I dont know where they live but I know of resources in the NY area

↑ Squash ↓

Wed, Dec 26 2007, 12:53 pm

GAMZu wrote:

Anyone else have inspirational stories about such children? Success as adults, as in jobs, etc...

Thank you, keep it coming!

I would liek to say that my mother always tells us she was so down and in so much pain when my brother was born. if someone would have told her then how much joy and laughter and light he would yet bring to our family and everyone he meets, she would've thrown them down a flight of stairs (tongue in cheek. she's not that kind of person Smile

).

My brother is everyone's favorite uncle. my kids r mad that he moved cuz they won't get to see him so often. it was always like a yontif when he'd come to us for shabbos - they were so excited.

what can I say - he's amazing!

↑ Squash

Wed, Dec 26 2007, 12:55 pm

also like to add- my brother learns in a 'kollel' in the morning and has a job in the afternoon.

today I asked him what he learned. his answer: mishna brurah.

↑ yedidya's mom

Wed, Dec 26 2007, 4:23 pm

a good book to start with is "Babies w. Down Syndrome" by Woodbine Publishers. Has a lot of information in it and some chizuk too.

amother ↓

Wed, Dec 26 2007, 4:40 pm

Heart to Heart
1347 Carroll St.
Brooklyn, NY 11213
718-221-1551

↑ amother ↓

Wed, Dec 26 2007, 4:43 pm

I teach a class of children wih down syndrome and it's a pleasure every day!!!

↑ downsyndrome ↓

Wed, Dec 26 2007, 9:22 pm

I would recommend that you don't inundate the new parents with all kinds of resources and information. They have time for that. Right now they need to deal with their emotions, and that is enough for them.
I remember the morning after my son was diagnosed, the hospital social worker came up to my room with pamphlets and leaflets and whatnot, and while I was still bawling my eyes out, she was going on and on with all kinds of information which quite frankly, at that point, meant zilch to me. All I knew was that my baby had Down syndrome and the world as we had known it was coming to an end!!
So, it's nice to offer support, but hold off with the technicalities! No baby has to join an early intervention program the first couple of weeks after birth. Let the parents recover first!

Mommy3.5

Wed, Dec 26 2007, 9:30 pm

she should get in contact with an early intervention center immediately. With a diagnosis, she will be able to get therapies that will be integral to her child's development.

↑ amother ↓

Wed, Dec 26 2007, 9:38 pm

http://www.dsau.org

↑ downsyndrome ↓

Wed, Dec 26 2007, 9:41 pm

Quote:

amother wrote:

http://www.dsau.org

Gee thanks! Who are you?

↑ GAMZu ↓

Wed, Dec 26 2007, 9:41 pm

downsyndrome wrote:

The baby is about 2 months old already. I haven't seen the baby, and the mother didn't tell me about the Down Syndrome right away. On the phone she sounded pretty accepting, but a bit lost. She told me she was getting info from people here and there, so I think she's ready.

Quote:

Heart to Heart
1347 Carroll St.
Brooklyn, NY 11213
718-221-1551

What is this?

farmom

Wed, Dec 26 2007, 9:47 pm

I want to add about the ourmendele.blogspot website that momof3 wrote. The mother of the ds baby is a really close friend of mine, and she is one of the most special ppl I know. She is young, and normal, and always trying to help others. If your friend want to talk to others in her situation, she should definitely talk to this mother. You can PM me for more contact info.

Seraph

Thu, Dec 27 2007, 3:11 am

My brother in law has a foster brother with downs syndrome. Not 100% downs syndrome, but mosaic.
He b'h is very with it, has a job working in a bakery packaging bread, iirc. Everyone loves him. He's great.
He's very functional. Possibly because he's mosaic and not completely downs... (I dunno if I'm using the terminology correct, I'm not a maven in this...)

ChavieK ↓

Thu, Dec 27 2007, 11:39 am

Feel free to pm me. I will happily give you my phone #. My ds will be 3 before Pesach. He is the joy of everyones life.But of course some had hard time accepting, some harder than others.For example my son who was 7 at the time asked for an email address so he could write his feelings, which once done made him feel much better.My daughter wrote a beautiful article for a local publication about the bracha of her brother. I have gotten tremendous chizuk speaking to some people. But not everyone feels that way. It's up to her. If her dh wants to speak to someone I will give you my dh's cell # too.Please wish her Mazal Tov.

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