ID Bracelets and Safety for Our Children with Down syndrome

Nic got his new ID bracelet and Colt is wearing two because his new one also arrived and he doesn’t want to take his old one off. He loves his bracelets.

I get asked about his bracelet a lot. So, here's the reason for the Medical ID bracelet and why I recommend getting one for your little ones.

Wandering, running off, or the clinical term, elopement, can be a frightening and fairly common behavior seen in children with Down syndrome. We have had some scary moments with Colt.

The fact that he loves to meet others, has very little fear and can open locks, buckles, climb gates and every other safety feature, does not put our mind at ease. We are always looking for ways to keep him safe.

After one scary incident we decided to order him an ID Bracelet as added protection should his propensity to wander and run off ever lead to one of our biggest fears, losing him.

Now that Nic is walking we decided it was time for him to have a bracelet of his own. I am still looking into GPS trackers as well, but a Medical ID bracelet is such a simple step we can take to help our boys in a moment of crisis.

Their new bracelets are from American Medical ID who have generously offered to  give 10% back on every purchase (5% on Gold) to Reece's Rainbow Down syndrome adoptions, as well as offered 10% off your purchase(5% off gold) when you enter the code “DWONDERFUL”. (Code will be valid for 2 weeks).

Here are a few more tips to help with the  frightening issue of running off:

According to "Supporting Positive Behavior in Children and Teens with Down Syndrome; The Respond but Don't React Method" by David S. Stein, children with Down syndrome do not process a lot of words in a moment of disciplining.   They process strong emotions, eye contact and facial expressions and seek attention in that way.  Bolting can become an attention seeking behavior.

"When you get upset, make lots of eye contact, raise your voice, and make strong facial expressions, your child is likely to experience your reaction as fun... for people with DS who are highly attuned to other people, this is like winning a slot machine- all the lights are flashing and it's entertaining!" (Stein p. 83)

Things to do: 1) Keep your reaction in check. Run after the child to keep him safe, but do not react.  Do not use a lot of words or yell or make eye contact.  Remain calm.

2) As discussed earlier, ID Bracelets and GPS trackers are an important safety tool for anywhere that you are at, home and away.

3) We have discussed Colt's propensity to wander with our neighbors so that they can be aware of the situation should the boys ever get out.  Nic is not a fast enough walker yet, but I am preparing for the possibility of him joining Colt too.

4) We have windows that open from the top and we do not leave them open from the bottom where the boys can reach.  Why do I include this? Colt has pushed a chair to the window, popped the screen out and climbed out the window to our backyard.  Fortunately, we caught him immediately, but it was a good lesson.  No open windows that he can reach or even climb to reach!

5) Add chimes on doors and windows and add locks where they can't be reached.  Now that Colt has grown we will be adding more locks in higher locations.  We have built extra gates as well, but Colt can climb them.

Hope this has given you some ideas to help keep your child safe.  It is constantly a concern of mine, so please share anything that has worked for you!

Have any of you had a scary moment when your child has wandered? Have you found any sort of GPS tracker or safety aids that you like? 

Colt’s Birth Story Part 1

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We could never have guessed that God would use Colt’s birth to lead us to Nic in an orphanage across the ocean.

We would never have imagined the amount of love and joy that Colt and Nic would spread to people all around the world.

We never knew how God would use these two boys to give comfort and hope to so many others who have received their own diagnosis.

But, almost 4 years ago, on the evening of Colt’s birth when we looked at Colt’s beautiful almond eyes and asked ourselves, “Do you think he has Down syndrome?”... We did know Psalm 139:14… I am fearfully and wonderfully made.

We knew 1 Corinthians 1:27 …God chose those the world considers foolish to shame the wise; God chose the weak things of the world to shame the strong and

John 9:3… but this happened so that the works of God might be displayed in him.

So, we knew that God was going to use Colt with his beautiful extra chromosome for His glory and this was the beginning of a new adventure. As all adventures in life, it is not always without fear, trials and difficulties but it is filled with the testimony of God’s grace and faithfulness through it all.

***Part one of Colt’s birth story. More in to come in upcoming posts.***

Colt’s Birth Story Part 2: A Down Syndrome Diagnosis

Our five older children sent to the playroom to wait, had only made it to the opening scene of “Frozen” when we delivered Colt in our bedroom at home with our midwife in what was a peaceful, smooth and FAST delivery. With the exception of a great deal of swelling due to an unusual face presentation birth, there was nothing unusual about our beautiful baby boy.

But as the evening went on I began to notice something unusual. Colt didn’t cry the entire night. He hadn’t cried since his birth. While this was pleasant, I knew that it wasn’t normal.

As his swelling went down I noticed the almond shape to his eyes. That was the first moment that I saw it and the first time I said my thoughts out loud to Jim…

“Do you think he has Down syndrome?”

Instead of sleeping, we found ourselves scouring the internet for “signs of Down syndrome”.

When our midwife returned the next afternoon, we did not immediately mention the diagnosis that in our hearts we were certain of.

I noticed her examining all the areas that I had been staring at all evening, checking for the gap in between the big toe, the crease on the palm of the hand, the smaller ears. Colt had none of these, but his eyes told it all.

It wasn’t just his beautiful almond shape eyes with the skin fold on the upper eye, but one of my favorite traits, his Brushfield spots, the little white sparkles on the blue iris of his eyes that told us his diagnosis that first night, long before the lab tests.

She asked me if he looked like our other children. I responded that he looked exactly like his older brother as a newborn but with Down syndrome.😊

Our sweet midwife didn’t know that we had suspected this and shared that she agreed. She asked us how we felt about this if it proved to be true. Jim quickly responded, “we don’t care… why would we feel any differently? He’s just as wonderfully made as our other children.”….

**Part 3 in next post**

Thanks so much for all your sweet notes!

Colt’s Birth Story Part 3: A Down Syndrome Diagnosis

“Surreal” is the only word that I can think of to describe the initial discovery of Colt’s diagnosis.  I don’t know if it’s a good word, but we were surprised, not sad or upset.   We knew that God does not make mistakes and we loved individuals with Down syndrome but also knew nothing about it.

It took about 10 days for lab confirmation of the diagnosis that we already knew. During this time, we explained to our children that God had knit an extra chromosome in every one of Colt’s cells, called Down syndrome. If you have followed me long, you have probably heard that this big sister went running out our back door screaming and crying, “he does not have Down syndrome!”

She had absolutely no idea what Down syndrome was and had only seen us react with happiness about it but it sounded scary and she didn’t want anything that was different for her baby brother.

I think that’s how many adults react. The unknown can be scary but it doesn’t mean that it is bad, as she quickly learned. All of my children have loved Colt as Colt from the beginning. Down syndrome might have been a scary name but they realized that it really meant nothing in defining who he was. He was just their adorable brother who they loved.

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My sister is one of the few people that I told at the very first moment we began to suspect Colt’s Down syndrome.  She arrived at our house shortly after with a meal and two “Am I Rockin’ this Extra Chromosome or What?” onesies.😊

This was how I hoped everyone would respond.  I dreaded the thought of someone saying, “I’m sorry” about our beautiful baby boy that we celebrated. With the exception of a close few, we didn’t share the news until we received the final confirmation.

***Announcing Colt in next post Part 4***

Colt's Birth Story Part 4: Our Announcement Letter

We wanted to share Colt’s diagnosis in a way that let people know that we celebrated our wonderfully made boy with his extra chromosome.

It has been almost 4 years since Jim and I together wrote Colt’s birth announcement, but the emotions still come flooding back every time I read it...

“We wanted to take a minute to share an update with you on our newest member of the family, Colt. Turns out our little guy has been gifted with an extra chromosome, otherwise known as Trisomy 21 or Down syndrome…. This changes nothing for us in our mind. Psalm 139 hasn’t changed. Colt is just as fearfully and wonderfully made by our perfect Creator as our other five children so why should we feel any different? God didn’t make a mistake when Colt was being ‘intricately woven’ and ‘knitted together…’’(Complete letter below.)

I remember crying while writing these words, not in grief, but in the realization of what a special gift we were given and just how much God was going to use our boy to impact our lives and this world.

I could have never begun to imagine just how soon and how greatly this extra special boy would change us though.

***Part 5 in next post on his 4th Birthday!!***

•Our Announcement Letter:

July 29, 2014... Hi Friends, We wanted to take a minute to share an update with you on our newest member of the family Colt. Turns out our little guy has been gifted with an extra chromosome, (otherwise known as Trisomy 21 or Down syndrome).

We sort of knew this soon after Colt was born when we saw his precious face that revealed one characteristic of down syndrome which is the adorable up-slanted almond eyes. He also didn't cry in the first 24 hours aside from a diaper change, which we also knew wasn't "normal". After a quick search on the internet we learned that many babies that have down syndrome do not cry very often. So this also began to confirm our belief that he could possibly have down syndrome.

When the midwife came back the day after the delivery for Colt's 24 hour check-up, she asked us if he looked like our others, we told her, "well yes, his older brother but with down syndrome". She was caught off guard as she didn't think that we had noticed nor did she realize that we would be just as happy with this possible diagnosis. She then confirmed to us that she also thought that he possibly had down syndrome.

We told her that it changed nothing for us in our mind. After all, Psalm 139 hasn't changed. He is just as fearfully and wonderfully made by our perfect creator as our other five children so why should we feel any different? God didn't make a mistake when Colt was being “intricately woven” and “knitted together”.

Last week Colt was seen by a pediatrician and a genetics doctor who both confirmed that Trisomy 21 was an accurate diagnosis. The last step was waiting for the results of his blood test which we received yesterday morning from genetics lab giving the final confirmation of the diagnosis that we felt we had already known since the day he was born.

We are praying that God will be glorified as we get the opportunity to share with our friends and family why we are just as thrilled and have just as much joy with Colt as with our five others (who as you know are not perfect and also come with their own little package of health and behavior issues that just so happens to not be given a packaged title or cute physical traits that might define their issues into a specific group).

As we were watching all of our kids cuddling Colt and doting on him and Luke carrying him around singing to him, Jim said, "well he couldn't have been born into a better family to always have someone loving on him and taking care of him :)"

Even though we know he'll be a greater gift to us than we are to him. Really it's not about him or us but just that it is an opportunity for God to be glorified and we are so grateful for that. We also know that there will be some unique challenges ahead but we have faith in our perfect Father and praise Him for another amazing gift in Colt!

Love, Jim and Kelsi

Birthday Boy and Final Part to Colt’s Birth Story

Today we celebrate 4 years since the start of this story with our precious gift Colt!

Colt, our preacher, singer, dancer, magician, mischievous cookie thief with contagious joy and love, has already touched the lives of more than some people do in a life time. We loved him before we knew any of that because of what we knew about God. But we didn’t believe those truths like we should.

We knew every individual is wonderfully made in the image of God deserving of equal love, life and respect.

We knew that what the world defines as success: fame, beauty, talent, wealth, popularity, comfort and ease, never leads to true joy and more often leaves those that achieve them empty and seeking more.

As the hymn says, our “worth is not in skill or name, in win or lose, in pride or shame But in the blood of Christ that flowed At the cross”.

But every time we looked at a child with different abilities with a bit of sadness instead of celebrating those differences and seeing the gift in them or feared having a child that was considered different instead of realizing what it really means to believe that God doesn’t make mistakes, we have shown our weak faith. We placed a value on an individual based on the world’s ever changing, conditional, ranking system instead of showing Christ’s unconditional love and trust in His sovereign plan.

God used Colt to open our eyes to this weakness. He strengthened our faith in His perfect plans replacing fear with courage in celebration of unique differences, knowing that they are for His glory.

In doing so, God used Colt to lead us to Nic, an orphan across the ocean whom He loved unconditionally and knew would need us, long before either boys were even a thought to us.

I don’t know what goes on behind the scenes of this story or what lies ahead, but if the first four years are any indication as to what’s to come, God has a lot more to accomplish through one little boy, who happens to have an extra chromosome.

Oh how we love him and how grateful we are to be a part of this story and to share it with all of you! Thank you for celebrating!

Colt’s Birthday Highlights

Just try not to smile!... If you missed Colt opening his presents or if you’re like me and could watch this everyday, here’s a highlight reel of pure joy! The last one is a card that he received with as much excitement and joy as his beloved Moana doll. CLICK ON LINK to watch! Colt's Birthday

Greatest "Career"

It was on a shuttle ride at a fall carnival in elementary school that I have my first memory of meeting a little boy with Down syndrome. We had both just won the coveted cakes at the cake walk. While winning a cake was the ultimate goal of every child’s evening, the joy that this little boy showed was such that I still remember him today.

At that moment I knew that I wanted to work with children with Down syndrome “when I grew up”. Of course, when you’re around the age of ten, career plans change and I soon after decided that I would rather run a shake shack with my best friend, followed by at least 100 different career plan changes.

It might have come later than I originally planned, but I am so thankful that in God’s perfect plan, I get to do more than just “work” with children with Down syndrome but raise these two wonderfully made beautiful boys and share the joy and beauty of Down syndrome to help end old, misconceived ideas.

Thank you all for being such an amazing group of people that always celebrate Colt and Nic with us and help spread, share and learn the beauty in Down syndrome! ❤️❤️.

My Treasure

Nic with his cute little belly, playing in the sand with Colt and his other siblings just melts me. 

But, I cannot tell you how many times when I am watching him in these new environments, I think about those babies left at his orphanage that we could not bring home.

I have had the privilege of becoming friends with many who have a heart for these orphans and a heart for adoption and fostering in the last few years.  They continue to adopt and foster those that many in this world consider “unlovable” or “unworthy”.  They do not do it because it’s easy, glamorous or fun.

When I read things like the quote below, I can’t help but ask myself am I doing all that I can do?  Just because we adopted Nic, doesn’t mean we can just wash our hands and be done.  No, it doesn’t mean it has to be adoption, or far off missions, but wherever it is, am I truly living the kind of life that Christ calls me to...

“You are called to go through this world as a pilgrim, a mere temporary resident, traveling light, and willing, as Christ directs, to do what the rich young ruler refused to do: give up material wealth and the security it provides and live in a way that involves you in poverty and loss of possessions.  Having your treasure in Heaven, you are not to budget for treasure on earth, nor for a high standard of living-you may well be required to forego both..

You are called to follow Christ, carrying your cross.

...your eyes must be open to see others’ needs, both spiritual and material; your heart must be ready to care for needy souls when you find them; your mind must be alert to plan out the best way to help them; and your will must be set against the trick that we are all so good at ‘passing the buck,’ going by on the other side and contracting out of situations of need where sacrificial help is called for.

"Knowing God" by J.I. Packer

But do I live it? 

Pink Eye Relief

I thought our vacation plans took a turn for the worst when Colt rolled out of bed last Saturday morning with crusty, goopy eyes. Our car was packed to hit the road for a week at the beach and Pink Eye was not in the plans. As a mom to seven, I’ve unfortunately had my fair share of pink eye experience and one thing that I have learned is usually if one has it, they all will have it soon.

Sure enough, Nic also had the telltale signs of pink eye with eye goobers (I think that is the agreed upon, official name by mothers everywhere😊) when he woke up as well. I use Homeopathic remedies whenever possible, so I quickly ran to the store to check out the homeopathic “TRP The Relief Products™ ” that I had just learned about.

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I picked up TRP “PinkEye Relief ®”. The box stated that it “temporarily relieves redness, burning sensation, watering, swelling, sensation of grittiness and overnight crusting”. Most importantly, it is non-toxic with no known side effects.

I immediately put drops in the boys’ eyes when I returned home. This did not prove as difficult as I was expecting, but I did need a helper so that I could gently pull their lower lid down to squeeze the drop into their eyes. We left on our trip and I continued to put drops in their eyes at morning upon waking, before and after nap time and at bed time.

One week later, I can report that out of my several experiences with Pink Eye, “PinkEye Relief ®” has by far been the best remedy and relief I have found. The boys’ eyes were no longer crusted over, or as I like to refer to it, glued shut with junk, when they woke up, as is the case normally for a solid week with Pink Eye. They showed minimal signs of Pink Eye because they seemingly had no irritation. This also kept them from continuously rubbing their eyes which only irritates them and aids in spreading it.

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A few Pink Eye tips from an experienced mom. Note, Pink Eye experience is not a badge I wear proudly, but I just need to point out that I am NOT a doctor, just learned these pointers from experience:

1.) WASH YOUR HANDS OVER AND OVER AND OVER. I know that one is an obvious one, but really, it is extremely contagious. I even wash my hands moving from one eye to the next.

2.) Hot compresses on the eyes are wonderful. My version of this is just washcloths soaked in warm water. Use a separate clean wash cloth on each eye every time. Seriously, this is contagious.

3.) Wash bed linens, favorite dolls and blankets and do not share or reuse towels. Have I mentioned how contagious Pink Eye is?

4.) Unless you want to be throwing out your good eye makeup, I recommend going natural around the eyes until you’re sure that YOU are in the clear. This is one mom tip that I have learned the hard way. Once your eye makeup touches your infected eye it must be trashed, or it will only spread it to the other eye and see to it that you have reoccurring Pink Eye. You don’t want that!

Thankfully, no one else in the family has caught the boys' Pink Eye, which might just be a first, but don’t think I am not inspecting everyone’s eyes upon wakeup each morning.

I noticed that TRP The Relief Products™ offers over 25 homeopathic remedies that are all made using 100% natural active ingredients that work safely and gently with your body. I intend to try more of them after my experience with “PinkEye Relief ®”. I found their web site www.thereliefproducts.com to be a great resource of helpful tips as well.

I really hope you don’t have to use these tips anytime soon, but if you’re here, I hope you find them helpful. These are just one mom’s tips for relief and are not intended to replace your professional medical advice.

If any of this helped or you have Pink Eye tips of your own, please feel free to share!