Downs syndrome?

[Dips]

Yes. I know somebody with Down syndrome. My youngest younger sister, who just turned 29.

My parents didn't learn of it until after she was born. At that time they had stopped encouraging institutional placement and started putting emphasis on what they call Early Intervention here in the states.

The results with YYS were wonderful. She went to a regular school with special educational services and support. She reads, does math and is now working at a job in a sheltered workshop earning a paycheck and paying taxes.

Besides a job, she has a marvelously dry and subtle sense of humor and wit and a circle of friends and a family who all love her to pieces.

[RootedPhoenix]

I figure the best you can do is be a good friend. Downs syndrome doesn't mean that the child is flawed, but it does mean that some things are going to be harder. Your friend will need your support.

I always get so mad about jokes made and mean things said against Downs syndrome people. It's just not right. I had a cousin who had it. I loved him to bits.

[KiaKat]

Kiwi, this is actually a good thing.

Wait, hear me out.

Your friend has discovered this early enough to start preparing for the 'just in case' situation. She also has a 5/6ths chance of not having a DS child.

It's also an opportunity for her and her husband to discuss what they expect to have to deal with from a special needs child. These days, there are so many early intervention programmes available.

She also needs to take a step back. Maybe go into a hermit-mode for a bit, and just reconnect with her family and herself. The people around her seem to be...unobservant, to say the least.

In the end, it's her (and her husband's) choice and decision as to whether they feel they are able to handle the increased difficulty of a special needs child. None of us can say what she should or shouldn't do.

I'll keep her in my thoughts, and hope she's able to calm down a bit and remember that in the end, this is HER baby, and no one else has the right or the responsibility to make her choices.

[Reyneth]

I came across this poem on a blog some time ago - and your friend might appreciate it. She's probably trying to grieve for the child she thought she'd have without being sure that they are completely gone yet. And I'd imagine that would be a hard thing to express.

http://vialogue.wordpress.com/2008/0...-a-disability/

If she's had an amnio, the results should be 100% conclusive. Either the extra chromosome is there or it isn't.

Whatever happens - she and her family will survive and thrive. I know it will take her some time to get there though.

[AnaKhouri]

I am repeating what everyone else has said, but Downs Syndrome is completely random. No one is at 'fault'.

I opted to have the quad test- it's a blood test that gives you a general idea of your risk factor; 1 in 1000, 1 in 200 etc. My midwife offered a more specific test, but we refused. As my husband pointed out, we could have a 1 in 10 chance and still have a kid without it, and we could have a 1 in 1000 chance and have a kid with it. So what's the point?

People with Downs Syndrome can live long and fulfilling lives. There is a customer who comes into the bookstore who has it; she is sweet, friendly, funny, and perfectly able to function in society. She's one of my favorite customers to help.

You sound like a wonderful friend. Whatever your friend chooses, just support her decision and let her know you'll always be there to help.

[fireheart]

I'm not related to anybody who had Downs, but there was a child in my class at school who had Downs. He was the sweetest kid I know, but was a bit impatient at times. We all gained a lot of patience from having this kid in our class. It can work, she just needs to give herself a bit more time than usual when bringing him/her up.
If you can, maybe see if you can find some support groups for your friend that might help her.

[BookstoreEscapee]

This might be helpful...it's inspirational but it's sad, too.

http://www.bellaonline.com/articles/art56423.asp
This is an article about Melissa Riggio (she was the daughter of the CEO of Barnes & Noble); she was 20 when she passed away last year of leukemia. She had Downs but she did a million things...writing, music, dance...there are links at the end of the piece to some of her stuff.

Her website and blog.

Just because her child might have a disability does not mean he or she can't have a full life.

I hope things turn out well for your friend.

[Rapscallion]

her specialist said she was an extremely high risk pregnancy and would have a one in six shot at having a downs baby

I don't know, maybe it's just that I'm feeling good today, but that's a pretty high chance (five in six) of a normal baby.

What I do know of the condition is mostly anecdotal, though we do deliver to quite a number of schools under the Steiner foundation banner. If anyone's regretted bringing a child with Down's syndrome into the world, I've never heard them saying so.

Rapscallion

[Shpepper]

I have always love Chris Burke's attitude about his Down's syndrome. He calls it Up syndrome. A Favorite quote from his is "Believe in yourself, work hard and never give up", says Chris. "We've all got disabilities. It's what we do with our ABILITIES that counts!"

More on Chris can be found here
http://www.imdb.com/name/nm0121630/

and here

http://www.chrisburke.org/index.php


Try to keep things positive for your friend. Sometimes the best thing you can do is just be the shoulder to cry on. I can't say it's going to be allright. I can only say it's going to be the way they are supposed to be.

[McGoddess09]

My mom's older sister has Down Syndrome. My aunt got herself tangled in the cord while in hte womb and not enough oxygen got to her brain.

I'm not saying it's easy. Trust me. It isn't. My aunt is close to 40 years old and still has the mind of a 7 year old child. However, i wouldn't replace her for the world. She is actually an inspiration to me. She participated in the Special Olympics and did really well. Whenever we go anywhere with my grandma, people stare and make fun of her for her walk and everything else, but she holds her head up high and keeps walking. Her innocence is so precious and she keeps me smiling.

I recently put on some weight. When I went to go visit my grandparents, my aunt came out,looked at me, and asked "McGoddess, are you having a baby?"

Instead of getting mad. I laughed and told her I wasn't.

My advice to your friend would be not to treat her so much like she has something different. Raise as if she were "normal", taking into consideration that her learning will be slower and things will take time. If she does this, then when the child grows up, it can have a "normal" life. People with Downs Syndrome are capable. They just need to be raised to know that. Downs Syndrome people can live on their own and hold down a job. It is very possible.

[Kiwi]

I don't know, maybe it's just that I'm feeling good today, but that's a pretty high chance (five in six) of a normal baby
Rapscallion

Sadly I think he was referring to future children, the have one more test to come back but at this stage but it looks as if it is downs.

I'm inviting her for dinner next week, planning an evening of games and I'm going to try and make it as fun as possible. She is spending all day grieving, some games to take her mind off it even just for an hour or so will come as a welcome break.

Thank you for all of the advise and support so far.

[Reyneth]

Sadly I think he was referring to future children, the have one more test to come back but at this stage but it looks as if it is downs.

http://en.wikipedia.org/wiki/Down_syndrome

Unless this is due to a translocation, it is not familial nor any higher chance of occurring in another child. The only way to diagnose the translocation would be a a genetic test/chromosome study for both the mom and dad.

97-98% of cases of Down Syndrome are fluke genetic mistakes. Not hereditary. Not due to any birth trauma. True Downs is due to an additional chromosome, nothing more. Other kinds of mental retardation can be hereditary or due to lack of oxygen but they are not actually Down syndrome.

There are multiple other syndromes with an additional chromosome or lack of a particular chromosome. A good number of them are fatal. Some cause mental retardation, but not all. It's amazing how many things biologically need to work just right and all together.

Once again, she DID NOTHING. There was nothing that could have predicted or prevented this.

[Buglady]

Kiwi, would you be comfortable showing your friend this thread? I'm just thinking it might be a positive thing for her, in contrast to some of the negative reactions she's been dealing with so far.

[Kiwi]

Kiwi, would you be comfortable showing your friend this thread? I'm just thinking it might be a positive thing for her, in contrast to some of the negative reactions she's been dealing with so far.

She doesn't want anyone to know right now, of the few she has told some have behaved very badly towards her so until this last test comes back and she has had time to digest the news, she wants it on the DL.

Personally it makes me so angry that people she considers friends would blame her or suggest things they know she wouldn't contemplate. I think she just needs some time to digest the news and accept it.

I know her and she will bounce back from this, shes just in shock right now. She is a nurse and has a wonderful husband and to be honest I couldn't think of better parents for a beautiful child no matter what other people might think.

Thank you to everyone who has provided links, I showed her the story about Italy versus Holland and she thought that was very helpful. I have also been reading up on DS and found it most helpful. We talked about support groups and the like. She already has started to shift her focus from grieving to how do I deal with this on a day to day attitude.

I'm so proud of her, I couldn't think of anyone who is more suited to be a mother, she has been such a good friend to me and I intend on being there for her as much as she wants or needs me to be.

[PepperElf]

I agree that finding out sooner is better... gives you time to really prepare.

One of the woman in my old church has a daughter with Downs. I don't know if there are varying degrees of the syndrome but for her, the daughter does require constant supervision. I also don't know if it's common with Downs, or just a complication for her, but the daughter is also partially deaf and wears a hearing aid.