S/O Babies w/ Downs Syndrome

amother

Dodgerblue

Sun, Nov 12 2023, 11:06 am

amother Lightcyan wrote:

I grew up with a brother with special needs and this thread is extremely judgmental. No one can ever judge the decisions of parents with a special needs child. The child takes over the entire family dynamic and can ruin a family. My family also decides to take in the special needs child of another family for Shabbos and yamim tovim and I get comments all the time about how the family of this child is so crazy and doesn’t care about this child, but from seeing the inside story, this is the most amazing thing this family can do for their other children so they don’t get hit from him and no attention. And they are deciding to put him in a home soon and I think that’s an amazing decision also. My brother lives at home because my mother thinks in a home he wouldn’t survive but not all of us think it’s the best decision as we had a lot missing from our childhood because of it. Please don’t judge mothers who give away their special needs child. It’s not always so selfish.

Unfortunately, I have to agree with you. We brought home our child with ds; in our case, I felt the opposite pressure—of how could we even think of giving the baby away. And we’ve paid and continue to pay, a very heavy, very painful price, in regards to our other children. People wax poetic about the Bracha that comes into the home of a special needs child. And I know that there are people who do see that, but unfortunately not all. The biggest Bracha is - a normal child.

ETA: I completely acknowledge that not every child with ds is like mine, and not every family is like mine; and therefore my experience is likely not standard. But for me, this has been the reality.

amother

Moonstone

Sun, Nov 12 2023, 11:11 am

amother Lightcoral wrote:

It's very ironic because ds is considered the designer label for special needs diagnoses, there's loads of organizations, programs and schools for them, much more so than other diagnoses.

The other one that gets lots of help nowadays is autism and many of these children are way more difficult than children with ds

Maybe in NY. In NJ there is nothing ds specific. The only diagnosis that gets a ton of extra help is asd, the only diagnosis with additional funding available.

Bnei Berak 10

Sun, Nov 12 2023, 11:37 am

amother Moonstone wrote:

And why is early termination ok just because it's not the child you expected to have? There are children with down syndrome who are healthy too! What if the child had adhd or ASD? What then, too bad, you couldn't terminate because there is no test?? Or it's ok because the features aren't stamped on their face?
And if you say they didn't feel they can handle it, we are all given many things in life we feel we can't handle. That's part of our journey and we grow into it. No first time mother can handle tumultuous teenagehood. No newlywed can predict the challenges their marriage can bring. And yes, in my experience, many other things can be much much harder than raising a child with ds.
I don't mean to be harsh and I hope I don't come across that way. It is very very painful to us parents to hear that there are those who don't view our children as worth of life simply because of a genetic difference!

The whole family needs to be taken into considedation, also the siblings.
They whole scenario is very painful for everyone involved.

GLUE

Sun, Nov 12 2023, 1:17 pm

#BestBubby wrote:

Yes, some DS kids are easier than the typical kids.

But many DS are much harder and negatively impact the whole family, sholom bayis.

Having a special needs child is a risk for kids going OTD.

Everything causes a child to go OTD.

Did you ever read all the things that cause OTD?
Being to poor\ Being to rich
Being to smart\ Being to stupid
Living in-town\Living out-of-town

It goes on and on.

amother

Navy

Sun, Nov 12 2023, 2:31 pm

amother Lilac wrote:

I believe the main difference lies in the fact that Down Syndrome is very evident at birth. When a child is diagnosed with autism they are usually older and the family is already too attached to them to consider giving them away.

But if you read threads even on imamother alone you'll see that some mothers of children with autism or other difficult behavioral challenges would consider giving away their older child away due to the immense havoc it causes to the entire family. Families have definitely been broken over a child with complex special needs.

I recommend we all reserve judgement.

The difference is that while families can be found for cute DS babies, but it's almost impossible to find a family willing to take some of the older children discussed on imamother threads.

amother

Chartreuse

Sun, Nov 12 2023, 2:47 pm

amother Lemon wrote:

Im sorry you dont believe what I wrote. But I actually, personally know of 2 families that had a child with down syndrome. And, the reason they gave the child away is because they have a big family at home and it would be too hard to take care of a child with special needs. They want the rest of theyre children to have a 'regular' upbringing with 2 parents that have time and patience for them.
Again, I dont think anyone could judge anyone that gives away theyre child. Even, if you have a child with ds and made the decision to keep the child.

Not commenting on the chassidish aspect of this as I don't know but want to highlight what you have said and others with similar comments. If someone has over 10 kids chances are at least 1 will have some issues. That's what you sign up for when you decide to have lots of kids. Or really any kids at all. Don't want to deal, don't have the kids. People don't give their children away if they suddenly are diagnosed with cancer, and that throws a household into turmoil. Why is this somehow different?

What is a regular upbringing? I think it's an upbringing where the children see that ALL the children are loved and not that one could be kicked out of the family unit for being different.

amother

Aquamarine

Sun, Nov 12 2023, 3:10 pm

amother Chartreuse wrote:

Not so simple.

Many many families across all spectrums eventually, by the time their special needs child is a young teen, send them to a long-term care facility or residential group home, usually because they can no longer meet their child's needs and those of their other children.

I have a family member who had a child that had a severe accident as a baby. The child is now tech-dependent. Virtually non responsive, medically fragile.
They also have a decent size family.
When the accident happened, they spoke to a few people who were unanimous that of course they should bring the child home and care for it
Caring for this child means that one of the parents or a nurse need to be responsive 24/7 to take care of the medical needs, it means that weeks at a time the child is in the hospital and needs someone to sit with them because they can't ask the nurse for help
This relative tried. Really really hard. Even through nursing shortages and nurses not showing up and insurance declining payments.
It reached a point that was not sustainable. The children were not getting cared for, the parents were falling apart, there was no money because 1 parent couldn't work.
They were recommended to put the child in a residential facility and visit weekly.

Do you have any idea how many people criticized and cursed out this relative to her face about abandoning her child that she chose to have, that what if it were cancer.

This experience taught me that every story is complicated and stressful and we should never judge a parent who's just trying to do right by her kids.

amother

Peony

Sun, Nov 12 2023, 3:24 pm

amother Aquamarine wrote:

I don’t judge anyone on this subject.
But, I had a sister who was as you described here and have a daughter with ds. Medically fragile children need hospital grade care around the clock, while ds children are generally just children who grow up very very slowly and sometimes never really reach adulthood. These two things are not comparable AT ALL.

amother

Oxfordblue

Sun, Nov 12 2023, 3:33 pm

amother Chartreuse wrote:

And there are families who have a child with disabilities as their oldest or second. Or their youngest of 4 children. I think it's pretty narrow minded to say that if you don't want kids with issues, don't have so many kids. G-d doesn't work that way.

And yes, children in the family should see that all children are loved but they should also feel like their parents can pay attention to their needs and not be totally consumed with caring for a disabled child.

People are being somewhat casual about this on this thread. I think everyone can agree that (1) if you haven't yourself been in the position of giving birth to a disabled child then you have no right to have an opinion or judge someone who made a different choice than you think you would if you were in that position and (2) this is obviously a major emotional burden whichever way the family would decide. It's not something lightweight or easily thrown around. Of course if a couple finds themselves in this position they will seek guidance, weigh every possibility and ultimately decide what is best for their family

amother

Moonstone

Sun, Nov 12 2023, 3:35 pm

#BestBubby wrote:

It is possible for child with DS to also get autism diagnosis.

Then can get extra services.

True but the services/funding are provided based on the autism diagnosis. A child should not have to get an inaccurate secondary diagnosis to obtain funding/accomodations for their disability.
Please don't present the benefits as available for down syndrome if an additional diagnosis is needed

amother

Bisque

Sun, Nov 12 2023, 3:37 pm

amother Lightcoral wrote:

The thing with autism is that there’s a grace period before you find out about your child’s diagnosis and by then, you’ve been dealing with their antics for likely years. My ASD child was in pre1a before she was diagnosed. Rather different than bringing home a baby you know is special needs. I’m not sure I could give up a baby I had carried for 9 months, but I probably don’t know what I’m talking about, since none of my kids have DS.

doodlesmom

Sun, Nov 12 2023, 3:48 pm

Seems that relatively healthy children with DS are easier on the family than any child with a medical condition from serious to severe…and many other special needs children.

I keep wondering why it became more accepted to give away a child with DS, and the only answer I see is that since this decision is made before there is any bonding with the child- it gets diagnosed pre birth- parents hearts can handle it. Many other diagnoses come post birth, and the moment that precious child is in your hand it gets much more difficult to part with.

Re siblings of children with DS going OTD, I really don’t see anecdotally this happening at all. (Maybe it occurred more years ago when it was taboo? )

Many people with special needs children claim that they are their easiest child to raise bh! With all the volunteering, organizations and governmental help nowadays bh.

amother

Peony

Sun, Nov 12 2023, 4:04 pm

doodlesmom wrote:

My kid with ds who is out most of the day is still my hardest child. I’ve never come across anyone who has a child with ds who says this.
What many people do say is that if you were to choose which special needs your child should have, choose downs, because it’s the most straightforward diagnosis. (Yes we would all choose to have healthy normal kids who listen to what we say and follow directions and change their own diapers.)

amother

Aquamarine

Sun, Nov 12 2023, 4:09 pm

doodlesmom wrote:

Re the organizations, let me clarify. In NY, a little NJ and maybe Israel.

In many other parts of the world, there aren't tons of organizations and volunteers and stuff. If you're lucky, there's a frum special Ed school that you can sue your BOE to pay, and maybe some high school help

You're coming from a very NYcentric perspective

yellowroses

Tue, Jan 30 2024, 10:20 am

amother Apple wrote:

I had the saddest story after I gave birth to one of my children. I was in the kimpeturin place affiliated with the sect that gives away, and they were talking by my table how a disabled child breaks the home and they should be given away. No one could have known about my sweet severely delayed 3 year old who I love so much. They were talking about disabled as if they were not people to be loved. I was so horrified. I cried and cried and asked hashem for help with her I felt it was an eis ratzon. and a few weeks later she got a diagnosis (thanks to imamother it’s a whole different story)

This notion is ridiculous! I grew up with disabled siblings and they have made me who I am today. All of us are much better people because we had the privilege to grow up with these special neshamos. And we are a chassidish family.

amother

Outerspace

Wed, Jan 31 2024, 12:07 am

amother Aquamarine wrote:

Out of the US there are programs too
Either way the ones I know are sweet easy children