I have a child with Down syndrome AMA

amother

Wed, Oct 04 2023, 4:36 pm

amother Tuberose wrote:

What # child was it?

What was your reaction? Your DH? Other kids (if you had any)?

All ultrasounds were normal?

My second child
it was a huge shock I was very young only 23. we were both in the denial stage at the beginning.
My other child was only 2.
I had a few ultrasounds due to a condition I have and they did mention the baby was smaller than usual but I was not worried because its common with the condition I have.
.

amother

Lemonchiffon

Wed, Oct 04 2023, 4:39 pm

How old is the child now? How is s/he?
I work in a school for special children and I feel a connection to all children with specialized needs. Are you getting the support you need? Both physical help and emotional?

amother

Wed, Oct 04 2023, 4:41 pm

amother Foxglove wrote:

What are some helpful and not helpful comments you got from others?

Oh the comments Punch

Truthfully I heard of people that got much worse than me
I feel sooooo bad for you.
Why don't you give your baby away you are young?
You must be so special!!!

There is nothing to say,
but I liked to be treated like normal,
I hated when people ignored me,
Just say mazel tov like you would to everyone else.
If you would usually give a gift give one, don't give one as a nebach.

amother

Lilac

Wed, Oct 04 2023, 4:43 pm

I'm another mother who has a child with DS, was a surprise.
Sonogram and birth were normal, we didn't suspect anything whatsoever.
He had some challenges after birth so was taken to the NICU but still wasn't an indicator.
I actually found out two days later, while nursing him. I realized myself that his eyes looked 'different'.
Reaction: shock, crying non-stop, wrote my out of the box life story that night- has many thrilling chapters.
The next crazy chapter came 1.5 years later.
It was a 'fun' time ahead...

amother

Wed, Oct 04 2023, 4:43 pm

amother Lemonchiffon wrote:

My baby is almost a year.
At the beginning the support was great, but over time people forget of the everyday struggle countless appointments etc.

amother

Lilac

Wed, Oct 04 2023, 4:44 pm

amother OP wrote:

Oh the comments Punch

Yup, those comments are way worse then the actual challenge.
I too have gotten many ugly ones.

amother

Lilac

Wed, Oct 04 2023, 4:47 pm

amother OP wrote:

My baby is almost a year.
At the beginning the support was great, but over time people forget of the everyday struggle countless appointments etc.

Btw, the first year or two are the most challenging usually.
"They" (though children worh DS ate soooo different from each other) become cuter and cuter, and most of the time less challenging.

amother

Orchid

Wed, Oct 04 2023, 5:44 pm

So do I! There were no indications and when they went back and reviewed my sonograms there was nothing there.
Tyh she is the biggest blessing in our life! And while there may be aspects that aren't easy, please don't refer to her as a challenge! My typical children have been much much more challenging!
Personally, the hardest part is when others presume incompetence and infantize my child instead of interacting with her normally on her developmental level. Treat her like you would any other child! She can and does much more than you think. If verbal communication is more delayed, focus on other forms of nonverbal communication too- it's all there if you stop to "listen"

amother

Coffee

Wed, Oct 04 2023, 6:31 pm

What is the proper way to relate to someone when finding out they have a situation like this. Example if you are a guest at their house and you find out that way when their child comes it etc...

Do you feel some communities are more open minded about the situation and are more acknowledging.

amother

Orchid

Wed, Oct 04 2023, 9:25 pm

amother Coffee wrote:

Absolutely don't eggshell around it but there is no need to make it into a "situation" either. Take your cues from your host and act normally to the child the same way you would to any other at that age/stage.
The more our children are exposed to normal interactions (not hyper special needsy treatment, or infantizing baby talk) the more they can learn them. The greater our expectations the more they will live up to them, at their own pace. But if we don't treat them naturally and expect normal behavior (because a diagnosis is an excuse) the more we deny them opportunities and limit them. Recognize this and know that you too can be a part of their social education organically through your interactions.
We cannot raise our children in a vacuum but it is frustrating when environments are hindering in that way.

amother

Orchid

Wed, Oct 04 2023, 9:29 pm

Another point, our children are children first, just like any other. They happen to HAVE down syndrome. They are not down syndrome/a downs baby/boy/girl etc. They are just a baby/boy/girl!
And for those who don't know it yet, "downy" is a crude and derogatory term. It is not endearing at all. It is labeling, differentiating, and name calling no matter how much some communities may try to insist otherwise.

Op, I'm sorry, it is not my intention to hijack your thread (despite my soapbox)

amother

Birch

Wed, Oct 04 2023, 9:33 pm

Did you have any close interaction with special needs kids or adults before? If yes, how was it and how did it impact your feelings towards having a child with DS?

I'm wondering because I was a counselor at a special needs camp for many years and truly loved and connected to my charges, and I always wonder how I'd react if I had a child with DS.

amother

Orchid

Wed, Oct 04 2023, 9:54 pm

amother Plum wrote:

Do you live in one of the communities that usually give away children with DS?

Bh I don't. I actually never heard of the concept until I had my child and joined a large chat

amother

Viola

Wed, Oct 04 2023, 9:56 pm

amother Plum wrote:

Do you live in one of the communities that usually give away children with DS?

what communities is this common in? who do they give their children to? and for what reason do they give them away?