1. This world moves too fast sometimes.

Most of us need to stop and smell the roses. I get it. The dishwasher needs to be unloaded, clothes need to washed, toys need to be picked up, Kids need a bath, and dinner hasn’t even been prepped!

But Down Syndrome doesn’t see all of that. Claire sees that she has been overstimulated the entire day and just wants mommy to turn on the tv and rub on her arm to reduce the outside noise. It is a hard lesson, but Claire sets the pace.

2. This world is attempting to stimulate our every nerve ending in order to get, and keep, our attention.

However, for people who cannot process things at a high rate of speed, the information is coming too fast causing overstimulation. Claire gets overstimulated with loud or unidentified sounds, flashing lights, and after having to interact with people for extended periods of time. To reduce this feeling, Claire sometimes removes herself. This appears in the form of watching tv or going to her room. Claire enjoys music so that she can forget about everything else and calm herself down. Lastly, Claire enjoys swimming. Swimming allows Claire to feel the buoyancy of the water pressing against her on all sides and she can go under water where the sounds are muffled. The buoyancy serves as a weight reducing anxiety, stress, and stimulation. (If you do not have access to a pool a weighted blanket serves the same purpose.)

Click here for the BEST noise reduction ear muffs!

3. Down Syndrome has taught me compassion.

Before I had Claire I had only been around 1 person with special needs. When I was in school inclusion wasn’t an option. Kids with special needs went to a different area in the school. Out of site out of mind. How awful! I do think this was a disservice to myself and my generation! Needless to say, I did not know how to interact, what to expect, or what the future looked like. Down Syndrome has taught me to see past the diagnosis! Instead of averting my eyes at the store, now I interact. When I see a mom with her hands full, I offer to help. I now know to ask if there are any allergies, I now know to include everyone in the class on an invite. And now I can teach what compassion looks like. I can advocate for Down Syndrome!

Click here for allergy free snack ideas. PS these are delicious!

4. Research

When Claire was diagnosed with Down Syndrome, I became a professional researcher! This was nothing compared to doing the bare minimum for a school essay! No one was going to be grading my research, my findings.

The final grade would be Claire’s quality of life. And that was on me!

So, I would be a stay at home mom during the day and a professional researcher at night. I wanted to know why! Why did this happen. Was it going to happen if I had another baby? What was Down Syndrome? How did they know that is what she had? Who’s fault is it? (Human nature is to blame someone or something. So who could I blame for taking away the future that I thought my family was going to have?)

Who could I talk to? What doctors could help me? What doctors did she need? Were they in Omaha? Or did we need to travel?

The list goes on and on. What I can tell you, if you are new to the down syndrome world, is DO YOUR RESEARCH! However, do not get caught up in the future.

Do the relevant research for the current and pressing questions.

Then get some sleep!

5. How to listen/communicate without words.

This came naturally to me. However, I do not think that is true for everyone. So, let me provide some insight.

You are your child’s coach. 

What does a coach do? They do drills, have practice, pick apart the muscle that needs to be stimulated and find ways to make it better, faster, stronger.

Down Syndrome babies are labeled as “lazy babies”.

Well, my baby was not going to be lazy! I saw it as a challenge. We were a team now and we weren’t going to lose. Through my research, see step 4, I discovered the early education program through the school system. They come to your house! I would watch intently, ask questions, and take notes with every single exercise. Then I would research other ways to target that particular muscle group. If she wasn’t understanding, or showed me it was too hard, I adjusted it.

For example, crawling was not happening!

She could sit and stand, but she had no interest in crawling. Crawling tends to come kind of naturally to babies. They really want to get that toy or person and wha-lah. You have forward movement.  Forward movement was too complicated. It needed to be broken down. So, I started with teaching her to get on all 4’s. After several weeks, I started to teach her to move one arm by reaching for an object. When she stopped toppling over, I would move that object so that she had to put her arm down and pick up the other arm. Once she was able to do that, she understood weight shifting!

So, then I put a toy a few feet away and I physically moved every single limb for her. I also would do it beside her. I would crawl to her and away from her. I would use the same verbiage every single time. This took months. But finally, she was a crawler!!!!

Click here for the EXACT book that the early education department provided me the first time they met Claire. It is extremely helpful! And would make a great gift to a mommy who is expecting or a family just learning about Down Syndrome. 

 

Okay, I know that is only 5 so far. However, this post is getting rather lengthy! Absorb this info and I will post the next 5 next Monday!

As always, I want to hear from you!!!

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