how do you respond to this? do you?

[SilverFish]

regarding people freaking out about soft markers for Down Syndrome and anatomy scans/amnio, especially when a lot of the language used is very negative?

i don't have a child with special needs (that i know of) but my sister has DS and i am finding it very triggering to read or hear about their concerns, at least the way they are worded, and even more so the responses people give. aside from the incorrect terminology, ie "downs baby", the way things are worded to make it seem like a "healthy" "normal" "fine" baby =/= a baby with DS really really bother me.

i don't want to tell people not to worry, because of course having a child who does have special needs isn't easy. it just bothers me that the language gets to close to veering into "it's preferable NOT to have a baby with DS" and i feel like there are more thoughtful, SN-positive ways to word concerns. does that make sense?

i am struggling with HOW to bring that up with people. do you just ignore it? the group of people that i am currently bothered by are very PC in general and sensitive to race/sex/gender language, for example... so i feel like i could say something, i just don't know how to word it.

thanks for your thoughts on this issue.

[SpottedFoxx]

When it comes up, I would just share with them that you have a sister with down syndrome, that she is not a "downs baby" and that you find their language hurtful. Explain that while having a child with special needs is difficult it's not a terrible thing (at least, not in my family and obviously yours). Share with them the wonderful things that has come to you as the sibling of someone with down syndrome.

[oaktreemama]

I am trying to dig something up for you that I heard on NPR a while ago that speaks directly to your questions.

It was an interview with a man who had an illness that confined him to a wheelchair w/ a breathing aparatus and I believe he also had to use a computer similiar to Stephen Hawkins to talk.

He spoke at length about how he was not interested in people "fixing" him. There was nothing to fix. He was very successful as an author, was married and fathered children, and generally felt like he was as he was meant to be.

He wasn't interested in joining the Facebook page looking for a cure for his illness. He wasn't interested in participating in fundraising to cure his illness. He would never ask to be cured of his illness because it is what made him who he is.

However, his essay provoked at lot of passionate responses from parents whose children have this disease. It normally kills children at a very young age and a lot of parents were upset at his comments. To them, it was absolutely a disease that needed to be cured. And to suggest otherwise was painful for these parents who were watching their children suffer.

My point in the above example is that people who are intimately involved in the special needs community-whether they are SN's or have a relative who is-can have very different reactions-one person's finding a cure is another person's I am fine the way I am and don't need to be cured.

And one person's desire to have a neurotypical child is not an invalidation of the life of a child who is not NT.

Gosh I am not sure the above even makes sense but i am ging to leave it up.

[SilverFish]

oaktreemama, thanks for your response. i really get what you are saying... i mean, there are definitely days i wish on some level that my sister was neurotypical. our family would be very different, my parents' lives would be easier, even hers would. so i guess i don't mind people hoping that their kids don't have special needs. but there is something about the language used that really gets on my nerves, and i'm wondering whether someone has an idea of how to say that without invalidating their concerns or turning it into a big argument about "quality of life" or whatever.

[SpottedFoxx]

Silver - all parents want their children to have a good, healthy life. This is something everyone pretty much knows. No parent wants their child to suffer. So... if you don't have a child with special needs, it's an alien world. They assume because our children and siblings are different, they must be suffering and they want to support us by helping us to find a way to end that suffering.

It's like going through a terrible situation and a dear friend, who is at a loss for words, says "I know how you feel". However, that person has never been in your shoes or even been through what you are going through - it can be infuriating. However, it's simply an attempt to make you feel better.

I'm thinking - based on what you said - that your friends aren't trying to be hurtful. It's ignorance that makes them say what they say and the only way to change that is to educate them.

[oaktreemama]

Yes exactly. And I think that is what you could say:

"My sister has Down Syndrome and while there have certainly been hardships for her and our family, we love her deeply and can't imagine our family any other way."

This has given me food for thought as well. My son has CP and it is mild compared to some, but certainly a disability compared to "normal" kids. And I know I have said to one mother, "We are so thankful he did not end up needing a walker." And I can see that could be hurtful or dismissive to a mother whose child does.

[Linda on the move]

Originally Posted by SilverFish

there is something about the language used that really gets on my nerves, and i'm wondering whether someone has an idea of how to say that without invalidating their concerns or turning it into a big argument about "quality of life" or whatever.

I like the phrases "typically developing" or "neuro typical."

My sn child is healthy, she's fine (most of the time), and she's normal (for her!). I believe that she is exactly how she is meant to be, but that I have a responsibility as a parent to help her become the best version of herself possible. But she's not *typical.* (She's on the autism spectrum)

Raising a sn daughter isn't what I would have chosen for myself. It's freakin hard and a lot of time I feel like I don't have clue what I'm doing. Many of the joys of raising a typical child are missing. I fully understand why people fear it. I've found it heartbreaking as a parent to watch my child struggle with things that come quiet naturally to most people.

[starlein26]

Since you seem to have the opportunity to address this, I would recommend making it about you...as a way to encourage empathy (some people get defensive when critized).

I'd start explaining your thoughts with "This is what I hear _________ when you say X" or "This is how I feel _________ when you say X" and follow up with "I realize/respect that you have a different perspective, but let me explain mine..."

It stings to hear poorly worded or incomplete (those that lack the perspective of someone in the audience) thoughts. I hope you can come to a better place with all of this with your friends.

[2boyzmama]

It's very difficult, even for those of us that DO have special needs children! My middle son has a chromosome defect that causes a syndrome similar to Down Syndrome. When I was pregnant with our third son, I struggled a LOT with whether to do any testing. I knew I didn't want to do any invasive testing, but did I want to do screenings of any sort? If I did, what would I do with the information?

I finally decided that I didn't care if his chromosomes were intact (which I'd only know from an amnio) but I did care if his vital organ systems were intact (heart, kidneys, etc) because if any of that was wrong, then it would change my pregnancy, change my birth plans, and we'd have to prepare for the post partum and newborn period differently.

I try to look at it like this: It's not his missing piece of chromosome that is "wrong" "abnormal" or "unhealthy". It is the symptoms *caused* by that missing piece of chromosome that are "wrong" "abnormal" or "unhealthy". Lots of us are walking around with microscopic chromosomal abnormalities, but are otherwise "normal" (as far as we know). Some people exhibit symptoms, and it's those symptoms that we fear.

Does that make sense?

So a flat nasal bridge or thick nuchal fold on ultrasound doesn't scare me, but a heard defect does. If it's T21 or 22Q causing that heart defect doesn't matter to me in the here and now, but doing all I can to ensure my baby's survival matters to me.

I've met people with Down Syndrome who have NO medical issues at all, although they all have cognitive impairment to some degree. I've also personally known someone who died from a cardiac defect as a result of Down Syndrome. I've also personally known someone who died from a cardiac defect who did NOT have Down Syndrome (or any syndrome at all). So it's not the presence of the syndrome, it's the presence of the defect.

I have no idea if I'm making sense...

[Adaline'sMama]

Silver, I agree with you that even without having a SN child (that i know of) it can be quite offensive to read/ hear people talking about these issues. My brother is DMD and has been diagonsed with William's Syndrome, which is very rare. I feel like the best way to respond is to let them know that there is a lot of research out there about amnio and about raising a child with special needs. Of course it is scary to be going through something like that if you are pregnant, but they should really do some research with a medical docotor or on a website that specializes in their specific possiblity without too much speculation beforehand. Speculation just makes it that much more stressful.

[SpottedFoxx]

Originally Posted by Linda on the move

I like the phrases "typically developing" or "neuro typical."

My sn child is healthy, she's fine (most of the time), and she's normal (for her!). I believe that she is exactly how she is meant to be, but that I have a responsibility as a parent to help her become the best version of herself possible. But she's not *typical.* (She's on the autism spectrum)

Raising a sn daughter isn't what I would have chosen for myself. It's freakin hard and a lot of time I feel like I don't have clue what I'm doing. Many of the joys of raising a typical child are missing. I fully understand why people fear it. I've found it heartbreaking as a parent to watch my child struggle with things that come quiet naturally to most people.

[pumpkin]

These people are in the very early stages of processing the idea that the vision they had of their child may be different from the reality. That doesn't mean that they won't love their baby. It doesn't mean that they won't eventually become advocates for appreciating neurodiversity. It just means that they are being inundated with information and a fear of the unknown. They need to process that fear.

I think the best response would just be that you have a sibling with the condition and that you are available to chat if they need advice.
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[Jack*and*Kate]

I agree with a lot of the other posters here . It used to SO bother me when I heard people say things like "UGH - my son has ANOTHER ear infection." Or that their daughter broke her arm. Like it's the worst thing in the world. But it's all about perspective - for those parents, those are the biggest things they've had to deal with. Their "scope" of the world is just a lot smaller when it comes to health issues with kids - that "bubble" doesn't expand until your experiences expand it, if that makes sense. In short, they just don't know any better because they haven't had to.

When I get upset, I just try to be grateful that THAT is all that parent has had to deal with - good for them, I guess (not to be snarky - just that it's great for them, you know?).