Ask the parent of a kid with Down Syndrome

Okay, someone suggested I move the discussion about Down syndrome to an “ask” thread, so here it is.

I have an 11-year-old girl with DS. I’ll share, but I won’t get too specific because I value my privacy and there are creeps on the Internet.

My main concern is that people tend to have an unrealistic, and very often out of date, perception of DS and other disabilities these days. Things have changed dramatically since most of you went to school with the creepy kid who didn’t talk and banged his head and drooled. Now we know that kid is capable of more and how to bring it out. He may get a job, live independently or partly independently, and even get married or graduate from college. And yes, he might still not talk and drool, but that’s less likely than years past.

I’m not anti-abortion.

Anyway, ask away.

No trolls or haters please. Don’t waste our time.

Did you have a positive pre-screening and time to prepare for her disability before she was born? Or was it a false negative? Or did you not have a screening?

I believe in the other thread, you copped to being male (if that’s wrong, please correct me). But if you are, and if the mother (your wife? I don’t know for sure) knew about the abnormality ahead of time and wanted to abort, would you have supported her decision to do so? Was there ever even the slightest thought in your or the mother’s mind of adopting her out? Was that a conversation that was ever necessary to have?

Do you have any other kids? If so, do you think your daughter’s disability takes away time and resources that would give them a better life? If not, do you plan to have any other kids?

Is she covered by Medicaid or your private health insurance? If you lost your private health insurance (through, say, job loss) would the disability alone qualify her for Medicaid? Is this a concern (no matter how far-fetched) that keeps you up at night?

Are you a member of any support groups, online or in person? Do you find them helpful?

Does your daughter have real friends? Does she think everybody is her friend?

I hope this doesn’t come across as confrontational. I’m honestly curious about a mindset that’s so different from my own. I knew a kid with Downs in the grade below me in school, but he spent most of his time in special ed classes. People were nice and would high-five him in the hallway, but if he had real friends I didn’t know about it.

How was parenting a newborn with DS different from a typically developing child? Were there issues with latching or nursing? Are there different guidelines or expectations for milestones such as holding her head up, turning over, grasping and other motor skills?

Glad you started this thread. I think your perspective on this issue is very welcome.

What was your view of Down Syndrome before you had your daughter? Did you know anyone with DS before her? Did that factor into why you decided not to abort her?

When your doctors told you that she had Down Syndrome, do you think they did a good job of explaining accurately what to expect? What did they say about it?

Does your daughter get teased a lot? How do you and she handle any teasing or bullying that she encounters on school (or during other activities)?

No question (all the good ones got asked), but I’ll share two anecdotes:

(I have Spina Bifida, and am 34 BTW)

When I was a kid, I got transported to school with the kids with DS, most of them very nice kids. My mother became friends with two moms who have kids my age w/DS one from my hometown) The other has a “normal” younger brother who is one of my brother’s life-long friends.

Anecdote 2: One of the baggers at my Shaws has Downs, and if I can, I make a point to get in her line and say hello.

Do you, as a parent, have any dreams for your daughter? What would a bright future for her entail?

Positive amnio.

We never had the conversation. We just knew. We are both pro-choice, so it wasn’t that. I can’t say what I would have thought if she had wanted to abort.

Yes, other kids. Yes, it takes a little attention away, but it’s inconsequential.

When I was unemployed for a while, and before Obama ended the practice, the problem of insuring her was a big one. But Medicaid was an option for her in that case.

Yes, very much. It was great to just be in a room full of people with DS and their families, just to see how many there are and how normal their lives are, and getting used to thinking of them as just people.

Yes, she has some very close friends at school - the ones who are willing to be at her level and patient with her. The kind you want all your kids to have, actually.

That’s what this thread is for. There’s no question that friendship is harder for a kid with a disability, especially one with communication problems. You just have to be pro-active and find the right kids and put them in the right setting.

With DS, though, they tend to be very outgoing and social, and tend to be less intellectually disabled than some others with disabilities, so they make friends easier.

Infants and toddlers with DS often having feeding problems. We overcame them but it took persistence and, later, oral-motor therapy. (This applies to lots of other genetic disabililities). She did nurse, after some working at it.

Milestones are out the window. Most babies are much delayed because they tend to have low muscle tone and low coordination. The local health department (this is a federal mandate) will send you help in the form of infant therapists to get the kid a head start - called early intervention. With EI, some kids can catch or even exceed the milestones of regular babies.

I experienced this, and have heard many other parents say the same thing - babies with DS almost never cry and very easily sleep through the night. As far as that goes, she was the easiest baby ever.

Thanks. I wish I had thought of this first!

Actually, I did have a little exposure, having worked in and around some group homes as a kid for a summer or two, sometimes with the residents and sometimes just doing mowing and stuff. Didn’t really factor in much though.

What I remember, and what I think many people go through, is thinking that it was going to be much worse than reality. I have heard and seen the horror stories too. I didn’t know DS from other disabilities either. It’s the unknown that is scariest.

Much of it isn’t that your kid will be somehow inferior to a regular kid, just different. This is a famous essay that experienced parents often show new parents of a kid with DS that explains it well:

Pretty much, but I realize now that I was so emotionally vulnerable that every tiny word or mistake I latched onto and got angry about, so looking back, they said nothing wrong. I noticed that the slightest bit of information, positive or negative, meant everything. If a doctor said “your child may not learn to speak” I was thinking she was certain to never utter a word and would be stumbling around. I magnified every word way out of proportion. Doctors need to be very careful in those situations. That goes for everything. It’s like when you’re waiting to hear news about a loved one’s surgery - as the doctor comes out of the OR, you latch onto his facial expression before he even says a word.

Not yet, but I worry about it in high school. We’ll see. I kind of doubt it will be a big deal for a few reasons:

  • teachers are more atune to that and aren’t as tolerant of it
  • she, and others like her, are much more included in classrooms, so she’ll be understood and accepted more
  • she’s very good at advocating for herself, let’s put it that way
  • right now she doesn’t give a damn what you think of her. Unless the bullying gets physical, she’s pretty impervious to teasing. (That’s an enormously admirable quality, too, I think. I’ve taken decades to learn that).

Thanks for an excellent post.

I always say hello to people with DS. I know how to talk to them now, and handle it if they’re not very communicative. And I know they won’t think I’m strange either (I hope).


I have met adults with DS who are married (to a spouse with DS).

And who have graduated from college (yep.)

And who have jobs. And who live alone, in their own apartments.

I read about one who started his own business.

I went to a concert where a guy with DS played seven instruments - pretty well too, not just a “token” thing. This is him: Amazing guy, look at his site (he’s good at bragging about himself).

There have been several actors with DS (see Lauren Potter on Glee for the latest, if you can stand to watch that show). Lauren is represented by a talent agency that specializes just in actors and other talented people with DS:

Hell yes I have dreams for her.

And the cool thing is that since expectations for her are low, everything she achieves is worth ten times more. When she graduates from high school, every parent will be proud, but I’m going to be cheering my ASS off.

A bright future for her would be to live a normal life, like the rest of us. Have a job and friends and be part of the community. She doesn’t have to be a famous actress or whatever, just be part of the community. Much like she’s just part of our family.

Is your DS daughter the oldest? Youngest? How do her siblings treat her?

Did you have a karotype analysis to confirm hers is a trisomy as opposed to a ring chromosome or translocation?

Is there anything you wish the school system were doing for her that it isn’t?

Oldest. Which is weird because you already don’t know what you’re doing, and now you’ve got something else thrown on top. But it’s also kind of cool, since you have to throw things like milestones out the window. It used to bother me, now I chuckle at parents with normal kids who worry about that stuff. The kid will walk eventually, relax.

She has one sister, who relates to her pretty much like she would a sister without DS. They play games and fight sometimes. The strange part is that the younger one is now more aware of DS and what it is than the one who has it.

Yes, because we had an amnio.

Not really. We’re very lucky that we live in a place with great public schools. On the other hand, her particular skills and needs are relatively easy for the schools to handle. That’s not true with every disability–I hear the complaints from other parents, and from other school systems. Some are downright horrible situations.

One thing that’s interesting is that special ed improves regular ed sometimes. For example, the system invented for helping special ed kids learn to write is now used for all kids in our schools. And some of the technology is also useful for regular kids.

Special ed kids get an Individual Education Program (IEP) spelling out goals and accommodations for that student. I think every student should have that!

**lance strongarm **, do you live in a small town, or big city? Have you considered submitting an editorial or letter to the editor explaining the positive experience you have had with DS, or welcoming the community to say hello to your daughter when in public? Between these two threads, there is a lot of positive information that should have a wider audience, and maybe a local one as well.

I’m in a big city. I’ve done things like that, as have many others.

I am definitely aware that she’s an ambassador for her kind, so to speak, when we’re out in public. What’s interesting is now many people say they know someone with DS or have a cousin with DS or whatever. Most people treat her like any other kid. She’s gotten to where she speaks for herself without needing much help from me now.

There are lots of organizations working on getting this information out too. It just takes time. Like I said, things have changed so much in such a short time that there are still people with DS alive today who never got the early intervention and education that could have helped them, so you still have people seeing adults with DS with big behavior problems or inability to speak or function well (not that that still doesn’t happen, but it’s less common). I wasn’t that aware of all this myself.

Does she have a reduced lifespan?

I think that kids with DS weren’t expected to make it much past thirty when I was a kid. Sounds like that’s changed now.

I don’t know if you can quantify this, but how much more work is a kid with DS? Does it take, say, twice as much effort as a ‘normal’ kid to get them to brush their teeth, get their shoes on, do their homework?

I’m not speaking about teaching them these things, but the day-to-day ‘chores’ of getting kids to do stuff.