So you have a kid with Down syndrome

In CategoryDown syndrome, Guest Posts

suprised baby

When we found out Froggie was going to have Down syndrome I didn’t think twice about telling people about it.  I was shocked and continued to be shocked by the rude, crazy, heartless and just plain ignorant comments I get from people.  It amazes me the things I hear.

With the help of CAPODS (a Facebook group for Parents of kids with Ds in California) I compiled a list of things parents have heard when people found out their child has Ds.  I sent this list to my friend Karen Morano and asked her to help us come up with smart ass responses to some of these comments!

Thank you Karen Morano!

Don’t they die when they are about ten?”

“Yes. My twenty-five year old is just being stubborn.”

“I think you’re thinking of dogs, perhaps.”

“Most live long enough to get the Denny’s senior citizen discount.”

“Yes, that is when all their extra chromosomes EXPLODE. I do hope you’re not sitting next to my daughter when it happens.”

“No, we’re electing to keep ours alive until adulthood when we can sell all her fully-developed organs on the black market for drug money.”

“Yes. They are also reincarnated into their own bodies quite often”
“Well if you have to have a disability, this is the one you want”

“Doc, I’m a collector. I want them all. Is Down Syndrome part of a starter kit?”

“Down Syndrome? No, I’d rather my child have Up Syndrome. Down Syndrome just sounds negative.”

“If I have to have a disability, this is the one I want—wait, did my kid get diagnosed with a disability or did I?”

“Does it come with a free set of kitchen knives?”

“So Down Syndrome kids are more likely to have heart defects, gastrointestinal problems and all these other things that go wrong but this is the one I want my child to have?”

“I respectfully disagree. Models with Crie de Chat Syndrome have a higher resell value.”


“You know, you can train her to keep her tongue in her mouth.”

“That’s great. Can we train YOU to keep your mouth shut?”

“It’s an automatic cooling device, it saves us on our air conditioning bills.”

“Really, that’s the biggest thing we need to be concerned about? Her keeping her tongue in her mouth?”

“Could you maybe focus on keeping YOUR daughter’s tongue in her mouth and let us worry about OUR daughter?”

“Why worry about it? It’s her Michael-Jordan-makes-a-slam-dunk face!”

“But whenever she closes her mouth her eyes bug out, then if we push her eyes back in her ears stick out”


“Wow, your baby looks so normal!”

“Wow, so does yours!”

“Wow, so does yours! Does he have Down Syndrome, too?”

“Wow, so do you, and we all know you’re batshit crazy!”

“My baby looks so normal. Is that supposed to be a compliment?”

“So did Clark Kent, and he was Superman!”

“Why, what’s he supposed to look like?”

“You have a normal-looking baby. Hmmmm. Well, you have very normal-looking children, too.”

“What, exactly, do you mean by that? Does he look abnormal somehow?”

“Well, where I come from, we tell mothers they have beautiful babies, not that they look so normal. Maybe I missed the latest update from Miss Manners or something. Is normal the new beautiful? If so, I hope you and your husband have a completely normal anniversary celebration.”

“If you’re trying to compliment my baby, you could just say he’s cute instead of offering a comparison to so-called “normal” babies.”

“Too bad, we were hoping for a real freak.”

“What, exactly, are you implying?”

“Um, thanks?”

“My baby looks so normal? Because looks are everything, right?”

ABLE Act – Activism

In CategoryDown syndrome

When we received the prenatal diagnosis of Froggie having Down syndrome many things went through my mind.  One thought that kept coming back, over and over, was about what his future would look like.  Will he be ok when he is an adult?  Will he be able to support himself?  Who will look after him?

There is no way to answer these questions now but I can do everything I can to prepare him to grow up to be an independent, productive member of society.  That is the best I can do, right? Wrong.  I can make sure that the laws support us in this!

What happens to people with disabilities when they grow up? The system is stacked against them.  Many people with disabilities really depend on Medicare.  Health insurance is so necessary, especially for people who have more health problems than typical.  The way the system is now a person can not earn more than $674 a month or have more than $2000 in assets or they loose their benefits.  This may include SSI, food stamps, Medicare and other programs.

The ABLE act is a change to the tax code that allows parents of disabled children to save for their future the same way we can save for college for other children in 529 accounts.  It allows the disabled person the ability to save some money to live on and use to clean their teeth or buy clothes or even go to the movies with friends.

When Froggie grows up will he be force into poverty and inactivity? Will he sit home and feel useless even though he will have the skills to be a productive, tax paying member of society? How will he feel about himself if he is told he can not work and contribute like everyone else?

On August 15th I had the great pleasure of going to Senator Dianne Feinstein’s office with members from the Down syndrome community.  We met with her State Director, Trevor Daley, and told him our stories and why this bill is so important to us.  We are asking Senator Feinstein to co-sponsor the bill.


I took both Froggie and Peanut with me.  I think Froggie did an amazing job looking cute and Peanut was polite and quiet.  Hopefully he will remember doing this when he is older.  I had an opportunity to share my family’s personal story with Mr. Daley and it felt amazing to actually be doing something about this very important act.  We should hear back in a few weeks if Senator Feinstein will add her name to the growing list of sponsors.

For more information about the ABLE Act you can go HERE. Please contact your Senate and House representative and ask them to sponsor this very important, life changing bill!  Froggie is depending on you!