Round #1 Your Questions About Down Syndrome Answered

Have you ever been curious about something, but never asked for fear of coming off as rude or ignorant?

I’m giving you a PASS.

October is National Down Syndrome Awareness Month and while there are troops out spreading knowledge, I thought I’d do my part by giving you a PASS for all those questions that you might have asked yourself while following along on our journey.

Send me your best and your worst – I won’t be offended!  

This week’s questions came pouring in & I have to admit that I was expecting them to be pretty shallow. I was so wrong! You guys were very thought provoking! Here is the first round of your questions answered.

Keep them coming, I’ll be doing this all month long! Send me a direct email by clicking HERE.

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

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Q: How can we help our children acclimate to the differences of someone with Down syndrome? Both from a parent’s perspective as well as child’s?

A: There are many ways to help bridge the gaps that you might notice. Here are three good examples:

  1. Learn basic sign language – It’s very easy to pick up and is just a google search away. People with DS are at a higher risk for hearing loss and difficulties with speech so just knowing “please” “thank you” “how are you” “my name is” will show that you care enough to try and communicate.
  2. Check for food allergies/intolerance – Before bringing snacks for the class, the team, the office, etc. check with them or their parents for any food preferences. People with Down syndrome have a higher risk for gluten and lactose intolerance. It’s an easy way to make sure that everyone can enjoy mealtime side by side!  
  3. Set a good example – Your children will follow your lead. Never make assumptions. Never underestimate someone’s abilities. Ask questions when you’re curious. My girl is almost 14-months old and if you were to meet us on the street, you might be surprised to find out that she’s just now starting to crawl. She has low muscle tone and it makes achieving gross motor skills very difficult for her. What you may not notice is that her fine motor skills are just about perfect because she’s not busy running around! 
    In the Down syndrome community, we use the phrase #MoreAlikeThanDifferent. There’s a reason for that! Keeping it in mind when you’re around someone with Down syndrome will eliminate gaps and differences that you may think are there.

Q: Do you have Missouri First Steps Service?

A: My answer to this question is “no” because though we live close to the Missouri line, we’re actually on the Kansas side. It is still raises a good opportunity to talk about early intervention. Depending on your location, the rules and names of the programs change. In Kansas it is called Infant-Toddler Services and we do take advantage of what they have to offer.

In Kansas, its not just for the disabled. Your child can qualify if they show a 25% delay in an area. This is determined after an evaluation by one or more therapists. Kara’s diagnosis makes her automatically eligible. We started with Infant-Toddler Services when she was just 5 weeks old!

Kara is seen once a week by our family coordinator who doubles as her Speech-Language Pathologist. Not only that, Kara’s SLP has training in nutrition and audiology among other things. What I like most is that they come to us. I have a lot of say in Kara’s therapy plan and schedule. It is an invaluable resource, especially for those who are finding therapy sessions a financial burden.

Here is a great list of Early Intervention programs by state.

You have nothing to lose by setting up an evaluation. The earlier the better!


Q: What fears did you have, if any, when you first found out and how did you handle them?

A: Oh boy – fear. I had so much fear when we got our baby girl’s prenatal diagnosis. Some of my first concerns seem so silly now…

Will I love her?

Will I be ashamed of her? 

Will she be beautiful? 

Will she have friends? 

Can my marriage survive this?

There is no easy way to handle thoughts like these and they certainly weren’t my only fears, just the ones in the very beginning before I jumped into some basic research. Here are some of the coping techniques I used:

• I educated myself and others. Running this blog really played a part in the healing process (still does as a matter of fact). Learning about Down syndrome opens my mind to the possibilities that are in store for my baby girl. Its not so scary once you realize that your child really isn’t so different from other kids.

• I recorded my thoughts and worries. Not all of my thoughts are published on this site. I kept a journal just for myself because writing out my fears not only helped me to clear my mind, it helped me focus on what was important. Now I can go back and see how much progress I have made. (Will I love her? Be ashamed? – Are you kidding me?! This girl is my EVERYTHING.) Now I see that those fears had nothing to do with who she was going to be on the inside. They all had to do with myself or how the outside world viewed her. Once I realized this, it was much easier to accept and move on.

• I reached out to my resources. I went searching for support groups, other special needs moms, the local Down Syndrome Guild, etc. I found people that were willing to listen and I leaned on them – hard. I surrounded myself with those that loved and accepted my daughter no matter how many chromosomes she had. It helped to know that I was never alone.

• I let myself be vulnerable. I cried. I embraced the fact that I needed to grieve. Most importantly, I didn’t hide my fears from my husband. He was going through this too. We leaned on each other and shared our anxieties. We learned together. We stood together then and we stand together now.


Q: It’s amazing that Kara is starting to crawl! Our son is about the same age, did you have any strategies to get her crawling? 

A: Hah! Not really – Kara is stubborn and was very content with sitting in one spot. Even when we bribed her by placing her favorite toy a distance away, she’d just start playing with her toes! In the end, it was persistence and puff snacks.

For the past few months, we would put her on her tummy and have her push off our hands so she would get excited about moving. I didn’t think we were getting anywhere at all, but a few days ago I laid some puff snacks out on her play mat and positioned her about two feet away on her tummy. She wanted them, but not bad enough so I started checking my phone. After about 10 minutes of laying around she just up and DID IT! I looked up from my phone and thought my eyes were playing tricks on me! She was finally inching across the floor!

After that it was all cheers and puffs. Now she’s moving and grooving more and more each day! It just shows that your son will crawl in his own time. He needs love, patience, and persistence. Those are the best strategies.


That’s a wrap for this week. Like I said – keep ’em coming! I’ll break next week to share Kara’s 14-month update, but then I’m back at it for the remainder of October ❤

Send me a direct email by clicking HERE.

*There are no stupid questions – but there are hurtful ones. If you have something hateful to say, know that I won’t waste one second banning you and your questions/comments will be ignored. Otherwise, I plan to respond to each and every question that I am sent. 

4 thoughts on “Round #1 Your Questions About Down Syndrome Answered

  1. I love this! I have been a special education teacher for 7 years now. I held a Down syndrome awareness day for school staff. Education is key! That being said, I often wonder how to handle it all as a parent. Kara is so lucky to have you as a parent! Look forward to reading your blog! 😊

    Like

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