Round #3 Your Questions About Down Syndrome Answered

If you haven’t heard by now OCTOBER is my new favorite month because

{OCTOBER IS DOWN SYNDROME AWARENESS MONTH}

In honor of my Baby Lemonade, for the month of October I decided to open this blog up to questions & post the answers each week, vowing that I wouldn’t be offended no matter how ignorant or rude you thought you were being.

Not going to lie, when I sent my first post of the series I had a legit panic attack. Probably the worst one I’ve had in a while. I am still working on getting thick skin so I was terrified of the comments I was SURE to get.

Instead what I got was a influx of thought provoking and genuinely curious questions. I guess I’m just lucky that my readers are so sweet. 

Here are your previous questions: ROUND 1 & ROUND 2

{Even though the month is over – I will always be open for questions. Send me a direct email by clicking HERE.}

You can also follow us on InstagramFacebook Pinterest for more Down syndrome love. ❤

Read on for more of your questions answered…

Down syndrome awareness - Life doesn't have to be perfect to be beautiful


Q: Kids ask a lot of questions. What’s the best way to talk to my kiddos about other children with Down syndrome? 

A: I’m still very new at this mom gig so the best way for me to answer this is to imagine that your young child is noticing my baby say, at the park or the grocery store.

First off, welcome their questions without embarrassment or hushing. “Why does she look weird?” “What’s wrong with her?” Feel free to say it outright – There’s nothing wrong with her, that girl has Down syndrome. It is the way she was born and the way that her family loves her.

I suggest pointing out the differences they may notice, but also the similarities. Her eyes are almond shaped, but they are a deep blue color just like yours! Maybe her tongue shows a little bit because all her muscles get tired just like yours do after playing basketball! Look at her ears, she has two just like you!

More than anything, if you don’t know, ask! You won’t have an answer for everything. Don’t be afraid to introduce yourself! If someone came up to me and said, “Hey my son would like to meet your daughter, is that okay?” It would literally make my whole day. I’d say “OF COURSE!” And explain that this Kara & she has Down syndrome and isn’t her smile so pretty?

Afterwards, we’d part ways feeling that much richer and maybe the next time your child sees someone with Down syndrome, they won’t need an explanation 🙂


Q: How varied are the milestone trackers for babies with DS? And have you had to teach your family about DS as your little girl grows? Is that challenging?

The milestone trackers for babies with Down syndrome are just as varied as typically developing babies. There is a just a wider range. Here is a great chart from the National Down Syndrome Society that helps to put things into perspective.

Down syndrome developmental chart
http://www.ndss.org/Resources/Therapies-Development/Early-Intervention/

 

As for our families – yes, we keep everyone in the loop as far as Kara goes. From the moment we got her prenatal diagnosis, we’ve been educating any friends and family that were willing to listen (which was pretty much all of them). In fact, Baby Lemonade Blog was started for that reason.

I LOVE teaching my family about Down syndrome. I pass on everything that I soak up from therapists, doctors, and other amazing DS mamas (CLICK here for a fabulous list of them). I feel extremely lucky that they are so receptive so it is not a challenge in the slightest.


Q: My question has to do with long term planning. What if parents don’t plan financially for their kids’ with Down syndrome after they pass away? I know someone with DS who is in his 50’s and his parents are in poor health. What is offered for his care or what can be done aside from someone bringing him into their home? Is there any special funding for his care and continued programs for learning and therapy?

A: After chatting with someone who is much more knowledgeable on the subject, I learned that in many states, someone like you described is eligible for Medicaid. Because of his aging parents, he’d move to the top of the waiting list for group home placement with support. There are also funding options and I would encourage reaching out to someone affiliated with a Down Syndrome Guild and they would walk through all of the options at that point. Here is a list of DS resources by state.

This is actually a pretty common problem because most parents expect to outlive their son/daughter with DS. Just 30 years ago, the life expectancy was only 25 years. However, things are changing. Nowadays, the life expectancy for someone with DS is 60! 

THIS IS A GOOD THING.

As a parent, it can be very stressful to think of the future knowing that you’ll have to support your child long after you’re gone. I’m sure this is a big reason why some people terminate when they hear a DS diagnosis. It can seem like your life is over knowing that you’ll be worrying about this long-term.

Quick story: I recently met a lady who has three adult children. Her two oldest are typically developing and her youngest is rockin’ the extra chromosome. Her youngest is the only one that is NOT living under her roof right now. Nothing is a guarantee.

So yeah, we need to start saving now so that Kara is taken care of when we are gone. We will do this for any of our children. Eventually, we fully expect Kara to get a job of her own. We will expect this of any of our children. Maybe Kara will live to be 60. Maybe 80? Maybe 100? (We have good genes on my mom’s side.) Maybe Kara isn’t the one we need to be worrying about?


Thanks to all who sent in questions to be spotlighted and thank YOU for taking the time to read & learn alongside us.

{Even though the month is over – I will always be open for questions. Send me a direct email by clicking HERE.}Kara in wagon with pumpkin

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