Category Archives: Down Syndrome

In These Three Years

Posted on by

As we celebrate Seth’s 3rd birthday, I have a very strong mix of emotions. There is a combination of happy, sad, emotional, nostalgic, and longing tears, but most importantly, of grateful tears.

I am so blessed that I have him. He truly is a gift from God. He has brought so much love and happiness not only to our immediate family personally, but to our broader church family, to the special needs community, and also to the whole world! You see, he is a delight. Everyone delights in him. They can’t help but smile when they see him.

2013 Spring 590I particularly remember walking the streets of downtown Seattle, pushing him in his stroller, and he was waving to everyone we passed. I watched their faces. Nine times out of ten, they couldn’t help but smile. I started counting. During our short little walk while Daddy was working, he made over 20 STRANGERS smile! I quit counting, and just enjoyed the fact that this little boy, this little sweetie that some people would deem “not compatible with life”, a life that some people would destroy, brings SO MUCH JOY to those around him. Just to the general public! Does he not make YOU smile?

Through this little boy, I have formed a bond with the special needs community as a whole. I have come to understand families with children who have a diagnosis that people don’t understand, that people don’t get, that people avoid. It isn’t easy to comprehend what they are going through, until you are there with them, in the trenches. I have learned SO much about not only Trisomy 21, but about so many other diagnoses. A family member said to me a year or so ago that “now all of your friends are people with a kid with Down syndrome. “ It hurt for them to say that. I hadn’t ABANDONED my friends and family. I had GROWN it. Why couldn’t this person see that? Why is it so “obnoxious” that I have these new friends?

These “new friends” understand what is going through my mind on a much deeper level. They are there themselves. It is a whole new world, that those outside of can’t fully comprehend. Don’t get me wrong, my family and friends have always been there for me, supporting me, and helping me, but they haven’t been in my shoes, yet. They haven’t faced this new life with all of its unknowns and doubts and fears. It would be like joining the military, or the ministry, and not being friends with other soldiers, or other ministers and people in other churches.

IMG_5812You connect with these people because you are in the same situation. Some of them have years of experience, lessons learned, heartaches felt, tears shed to share with me. I have gleaned so much from the special needs community, that I am glad that I am able to give back just a little when I share Seth’s triumphs and accomplishments. My family and older friends rejoice with me, but my special needs community sheds tears with me, because they GET IT! They KNOW how hard it is to REACH those milestones!

I have “new friends” who have children much older than Seth, who have helped pave the way for so many things that are SO important in Seth’s life. I am thankful for those science fanatics who have learned how to create vitamins specifically for kids with Trisomy 21, who have put together lists of supplements, who have learned how to redirect the brain to build new bridges so that he can accomplish new milestones, who have spent their lives trying to protect the unborn from being destroyed because of fear of the unknown. THESE are my “new friends”! Be glad that I have them in my life, that we are walking this path together! For the sake of my son.

One of the biggest blessings in my life is the fact that my family has always been involved in the church, since I was an infant. My dad went to Bible school when I was a tiny tot, and went on to be a full-time pastor when I was eleven years old. I was raised going to church and meeting new Christians from other churches. That’s how I met my husband! As I got older, I was blessed to meet people from churches around the United States, and in more recent years, I have been blessed to meet people from churches all over the world! I thank my dad for creating this love for other Christians in other countries!

I tell you this, because now, Seth is loved ALL OVER THE WORLD! He has moms camera 063families not just in every state in the United States (especially in Alaska and Oregon), but in Ukraine, Poland, Japan, Hungary, Bulgaria, Russia, Australia, United Kingdom, Canada, New Zealand, Philippines, India, Ireland, Germany, Brazil, Egypt, South Africa, Pakistan, Malaysia, Italy, Spain, Costa Rica, Chile, Indonesia, Portugal, Turkey, Mexico, Ecuador, Singapore, South Korea, Czech Republic, Argentina, France, Lebanon, Norway, Netherlands, Puerto Rico, Kenya, Bosnia, Herzegovina, Iran, Kosovo, Bangladesh, Panama, Kuwait, Bermuda, Sweden, and England who love him, are inspired by him, are challenged by him.

Finally, Seth has changed our family. He has opened our eyes to the needs of others. He has opened our eyes to the plight of a whole generation of unborn children who are killed because of the unknown, because their parents are scared of what they don’t understand. I now have a passion to help them understand, and to not fear it, but to embrace this new adventure that God has laid before them with their own precious gift.

Family members have asked me if it seems like there are more children born with Down syndrome now than there were a few generations ago. I think it is because social networking makes the world seem smaller and more connected. You hear of more stories, and meet more people. 2013 Spring 114Once your eyes are opened to something such as Trisomy 21, you see it everywhere. Also, my husband and I have talked about the sad fact that the reason that is seems like there are more instances of special needs in the Christian and homeschooling communities is because we are families not aborting our babies because of it.

Seth has opened our family’s eyes to the need for supporting those who are diagnosed both before and after birth as well. At the tender age of 11, my daughter spent a lot of her time creating a video to share withthose who were new to a diagnosis. She created this video in the hopes of it helping to change the way the world sees a Trisomy 21 diagnosis. You can watch her video here.

One of my sons remarked to me a few days ago that his understanding of Trisomy 21 has changed with the life of his little brother. He thought all kids with T21 were the same. He didn’t realize how different they all are, how smart they are, how fun they can be. This young manis going into the military. I look forward to seeing how God will use Seth in his life to go forth and change the world, and be able to connect with others in a new and different way.

Another one of my sons is going into the medical field. He already had a heart for helping others. He adores his baby brother and would give his life for him. God only knows the ways he will be able to be more compassionate, more endearing, more capable, and more knowledgeable when it comes to his work in the medical field with this newfound understanding of children and adults with special needs.

Band of brothersI also have four other sons who are more aware of their surroundings. They ask questions about others and are friendly and caring to those who may appear to be a little different. It seems as if every time we go to the park, other parents and grandparents compliment me on how nice, loving and accepting my children are toward others. They also have a bold understanding of special needs, and share with strangers that their little brother has special needs, but “he is learning REALLY FAST!” They get excited with each new word that Seth is able to say, and every new feat he is able to accomplish. They have learned to slow down and enjoy the little things. They will be better friends, neighbors and eventually fathers because of it.

Yes, Seth is making a difference, one smile, one milestone, one trial, one triumph at a time. And this is just the beginning.

Being Different

Posted on by

I didn’t even see them coming.

I guess I never do, because I don’t ever expect anyone to be so mean.

I was pushing Desi on the swings, as high as I could. She never gets scared of anything. Not even all the doctors. Mom calls her Destiny the Brave. She loves it when I get to take her to the playground after school. “She loves her big sister,” Mom always tells me. “Loving someone makes you brave.”

All of a sudden I heard girls laughing behind us, and I didn’t feel so brave. It was ugly mean laughing, like the Joker in Batman. And I could hear those words, the ones I’m not allowed to say. I wouldn’t ever want to say those kinds of words anyway.

Destiny didn’t notice, and she never stopped smiling at me. She just kept giggling. Most people love that sound. I do.

“Look at the little retard baby! Hey, retard!”

I hate that word. I don’t hate anyone. I’m not supposed to. But I hate that word more than anything.

How can people just hate someone they don’t know at all, someone so totally gentle and sweet who doesn’t even understand what it means to be mean? I hope she never understands that.

I caught the swing and stopped it, holding Desi in place before I turned around. She’s still pretty wobbly sitting up on her own, even in that little bucket swing. She’s almost two, but she still needs some help with stuff like that.

image1

I wished Mom was with us. I took a big breath and tried not to sound as mad and scared as I was. The girls were bigger than me. Teenagers. High schoolers maybe. At least middle schoolers, but they weren’t in my sixth grade class. Nobody in my class would be mean to Desi.

“Don’t say that.” I stared them down and used my best calm voice, the one my mom said was best to use with people who don’t understand why that word hurts. She’s really good at explaining. I usually don’t have to.

“What difference does it make?” the taller girl laughed. “She can’t understand anyway. Can she?”

I wanted to run into her and knock her over, pull her hair out maybe. At least punch her really hard. Or maybe just cry and hold my sister so she wouldn’t have to hear those words. But I took a deep breath instead, like my mom said she has to do sometimes when people give her reasons to educate them.

“Her name is Destiny. She was born with an extra chromosome. She has Down Syndrome. She’s no different than us and she’ll be able to do everything we can, just in her own way and her own time. She’s a person just like you.”

The shorter one snorted. “Whatever. Let’s go, Ashley. We don’t need to waste our time on freaks anyway.”

They started to walk away. I wanted them to go away. But Desi squeezed my hand and made those cute little kissy noises she always makes just for me.

“Hey!” I yelled. “I was wrong.”

They stopped and looked back at us with weird duck faces. “Well, duh. Of course you were. The kid’s a retard for sure,” Ashley chuckled.

“No.” I picked up my chubby little sister and held her close. She was still giggling. We walked up to the two girls. They seemed so much bigger up close. Or maybe I felt smaller. But I had to say it.

Desi’s little fingers were twirling in my hair and I’m pretty sure she was blowing bubbles all over me but I didn’t care. “What I meant was, I was wrong when I said my sister is just like you. She will never be anything like you. She will never be mean and hateful and judge people based on how they look or what they can and can’t do. She is different. And I’m glad.”

They didn’t have anything left to say. Neither did I. My eyes stung. I held Desi tight and tried not to jiggle her around too much as I walked as fast as I could away from them. I stopped at a bench at the edge of the playground to catch my breath. When I looked back, they were gone.

I sat down and realized I was crying. Desi was making the kissy noise and squishing her face against mine, pressing her little palms on my cheeks like she wanted to wipe the tears away. We sat there for a few minutes because it was all I could think of to do.

“That was a pretty brave thing you did.” I had never been so happy to hear my mom’s voice. Before I could even turn around she put her arms around me and hugged me from behind the bench.

“You saw?” I asked. “They were saying the “R” word about Desi. I was so mad.”

“That word makes me mad too,” Mom said. She sat down beside us on the bench. “I always watch when you’re out here, Sara. We protect the people we love.”

“Loving people makes you brave,” I smiled.

Destiny started to giggle and crossed her arms over her chest. Mom and I looked at each other. Was she really doing it?

“La yoo,” she grinned, still criss-crossing her arms like she was giving herself a hug.

I guess she really had been paying attention to that baby sign language video we played for her all the time.

It was the sign for, “I love you.”

Short story by Tammi Croteau

image1

Kidney and Bladder health regimen

Posted on by

I am working on the whole story of Naomi’s kidney issues, but in the meantime, I have read about many families that are going through very similar stories of the horrors of figuring out how to keep their loved ones from UTIs or kidney infections, so I have written up the protocol for what I used.

I have learned even more since then, and would probably use Young Living essential oils such as Thieves (a Young Living Essential Oils blend of Clove, Lemon, Cinnamon, Eucalyptus Radiata, and Rosemary), Oregano, and Frankincense. If you are interested in oils, send me a message on Facebook.

At about 3yo, Naomi wound up with a really bad kidney infection. The local doctor (we lived in a very small town) did his best to help her, but unfortunately, the antibiotic he put her on didn’t kill the infection in the walls of her bladder, so as soon as she was off of it, the infection returned. After two rounds of the first antibiotic, he called Naomi’s urologist and he told her the best antibiotic to use. (I will get her records so I can list the antibiotics.)

After that, I started seeking ways to help her keep from getting this horrible things. I couldn’t imagine our life continuing the way it was. I called the local Alaskan natural store, All About Herbs, and a lovely lady named Dori, put together her recommendation. I bought it all.

Every day, I would take the capsules apart, mix them together with some yogurt and she would eat it right up. She hasn’t had a bad infection since.

The first is Cranberry and Buchu. Here is the description from Nature’s Sunshine website:

For centuries, herbalists have known the diuretic properties of cranberry. Scientific studies have concluded that cranberry juice contains substances that support a healthy urinary tract. Cranberries also help promote healthy digestion. Buchu helps nourish the urinary tract. Its powerful, penetrating aroma is akin to peppermint or camphor and helps keep the urinary tract healthy.

cranberry and buchu

The next is Primadophilus l-Reuteri. It is a very strong probiotic. Primadophilus Reuteri fortifies the intestinal tract with a high potency of active lactobacillus cultures. I have done more research since Seth was born and have had other probiotics recommended, particularly Prescript Assist, but I have no personal experience with it, and it is quite a bit more expensive.

l-reuteri

There is also a powder version, but I just pulled the capsules apart and mixed them with yogurt. I think you get more for your money in the capsules than the powder form.

Primadophilus Reuteri

The third item is Bifidophilus Flora Force.

Bifidophilus Flora Force provides billions of beneficial intestinal microorganisms that offer a whole range of health benefits. This product contains Lactobacillus acidophilus and Bifidobacterium longum plus two additional strains, L. casei and L. rhamnosus for a more complete probiotic formula and added support for the immune system. NSP added fructo-oligosaccharides (short- and long-chain), which support the growth of these beneficial organisms to ensure the potency of this product. Each capsule provides a good balance of 4 billion beneficial microorganisms. This product is recommended for daily use to help maintain a healthy balance of friendly flora in the intestinal tract and to support the immune system. It may support respiratory system health in children and it helps synthesize B vitamins.


Bifidophilus flora force

I hope this helps some of you at least reduce the severity of infections in your loved ones. Please feel free to contact me via Facebook if you have any questions, or just need a listening ear who has been there.

Why “Trisomy 21” is a better term than “Down syndrome”

Posted on by

The following was pulled from an article on MedicineNet.com, and has had me thinking for quite a while now. I first drafted this post in October, and was reminded of it again as several of my new T21 friends, that I have met online since Seth was born, have been discussing the world’s misperceptions about this syndrome:

“Down syndrome is named after the 19th century English physician J. Langdon Down who described the condition in 1866. As a matter of fact, Langdon Down was not the first person to describe the condition. It was clearly recognized 20 years earlier by the French physician E. Seguin who described the condition in a book he published in 1846 in Paris. Such historical inaccuracies in naming diseases are common. However, there are stronger grounds for not calling this condition after Langdon Down.

In great error, Langdon Down attributed the condition to a “reversion” to the “mongoloid race.” He held that evolution had been reversed and there had been a sort of backslide from the superior Caucasian to the inferior Oriental race. Hence, the name Down syndrome smacks of racism.

The disorder was also once called mongolism, a term now considered perjorative, and to be avoided in English. (It is still used in some countries). Other names that have been used over the years include mongol, mongoloid, mongolian imbecile, mongoloid idiot, mongoloid deformity, Kalmuck idiocy, Tartar, unfinished child, Langdon-Down syndrome, Down’s anomaly, and Down’s deformity.

All of these names should, in our view, be jettisoned. The least controversial and most appropriate name for this syndrome may simply be what causes it: TRISOMY 21.”

One of my favorite new friends from Kimchi Latkes, whom I have ACTUALLY visited with in person 3 separate times, shared a post that her husband wrote recently too. My favorite paragraph is this one:

Second, why in Heaven’s name do we still refer to T21 as “Down syndrome”???!!! I don’t know about you, but before I read Down’s paper, I imagined him as a mild-mannered geneticist in a lab coat working hard to figure out the extra chromosome thing. Not so. That guy’s name is Jérôme Lejeune, who did his research in the 1950s. By calling T21 “Down syndrome,” we all unwittingly perpetuate Down’s offensive legacy, not to mention the junk science that spawned such senseless tragedies as mass institutionalization, eugenics, and forced sterilization–i.e., the unspeakable suffering of countless human beings. Wouldn’t it be better to simply call this genetic condition T21, or even “Lejeune syndrome”?

You can find the whole post here.

What do you think? SHOULD we try to change the name, and thus the misperceptions? You say it is too hard to change something this prevalent? Consider a waterfall. What initially appears to be a sheet of water is actually millions of tiny droplets, each one separate from the other, but together, they are a mighty force.

stock-footage-hd-video-of-dark-powerful-waterfall-with-lots-of-water-spray-skogafoss-in-iceland-hd-video-hdr

There’s an old hymn that reads:

What if the little rain should say,
So small a drop as I
Can ne’er refresh these thirsty fields,
I’ll tarry in the sky?

What if a shining beam of noon
Should in its fountain stay,
Because its feeble light alone
Cannot create a day?

Doth not each rain-drop help to form
The cool, refreshing shower,
And every ray of light to warm
And beautify the flower?

Go thou, and strive to do thy share-
One talent,-less than thine,-
Improved with steady zeal and care,
Would gain rewards divine.

Blog-water-droplets-Tile

We also see it written in the Scriptures, in Job 36:

Behold, God is great, and we do not know Him;
Nor can the number of His years be discovered.
For He draws up drops of water,
Which distill as rain from the mist,
Which the clouds drop down
And pour abundantly on man.

Thoughts on “People First” Language

Posted on by

IMG_6133

The “idea” of People First Language has been rolling around in my mind since Seth was first diagnosed with having Down syndrome. I can understand how it comes across to some when their child is described as a “Down’s kid,” (people don’t generally call a kid with cerebral palsy a “cerebral palsy kid”, or a kid with cancer, a “cancer kid”) but I think things can be taken too far.

Getting offended when someone does it, unless they are intentionally making fun of them, shouldn’t make us angry. I have told several people about “People First Language” but I make sure to tell them that it doesn’t offend me when it isn’t used, but it does offend other people. We can be sensitive to others reactions, but we also need to keep ourselves from thinking too highly of our situation. Everyone is NOT “out to get us.”

I am a part of a pretty big community of ladies who have just entered the “special needs” community, and I find a lot of them get offended pretty easily. I think part of it is the “mama bear” coming out in them, to defend their cub, and part of it is assuming that people are doing it purposely. Sometimes, people ARE being cruel and mean. Those people need to be educated on how to behave in general. Trust me, they aren’t just making fun of special needs kids. They are trying to build themselves up, and don’t care WHO they hurt.

Bottom line is, if someone dismisses Seth because he has Down syndrome, that is their loss, because he has an amazing personality, and Seth doesn’t need them in his life.

Here is another blog post that encouraged me to put my thoughts down on the subject:

Reagan’s Story: Reaffirming My Stance

Seth – 20 months old

Posted on by

I realized that SO much has changed for Seth in the last month, and I haven’t shared on my blog! It is AMAZING the growth I have seen in him!

IMG_5071

1) 4-point crawling is now his default mode of travel! He started his first 4-point crawl at the beginning of September, when he was in the nursery at Awana! I was in there with him, and he got up on his hands and knees, crawled 4 spaces, signed milk, and said, “Please!” It was SO incredible! I was SO excited!!

After that, he would revert back to the belly sliding most of the time and I was getting rather discouraged, but one funny story about that is that I would tell him “get up on your knees” and he would for a pace or two, then drop back down. After about a week of that, I would say, “Get up on your knees, Seth!” and he would laugh and start belly crawling away faster! He is such a little stinker bug!!

IMG_5046

I was getting a little discouraged again, (why do I always do that to myself!?), so I started “making him” crawl on his knees up and down the hallway, like I did when he was first learning how to make forward motion. This time was a little more challenging though, for as soon as I would get in front of him to encourage him forward, he would drop back down onto his belly and scoot. Eventually, after several days of multiple times up and down the hallway, he gave up the belly crawling for the much faster mode of 4-point crawling. He’ll still drop down on his belly at times, especially if it is a nice slick floor (he’s NO dummy!), and “glide” across the floor at top speed!

3) Seth is now pulling up on EVERYTHING, including the coffee table, bar stools, chairs, laundry baskets, toys, beds, mats, etc! He is now cruising along any surface, and passing back and forth between items!

IMG_6086

He has learned the fine art of climbing from place to place, including the stairs. On Sunday, he climbed all the way to the top of the stairs at church to the youth room with no one noticing, and started hollering because it echoes up there! He will climb up onto the floor mats in his sister’s room and then onto the bed by the mat, and two days ago, he climbed A LADDER!! It’s a good thing his brother was around to spot him!!

IMG_6256

He will stand against the wall for a long time, playing ball with me, until he tires and lowers himself down to a sitting position! He will also stand at the coffee table, and barely hold on with one hand while playing with whatever he can get his hands onto.

IMG_6261

2) After he started 4-point crawling, it was like his brain exploded with new energy. He has added A LOT of new signs to his list! He now signs the following words, and will put 2-3 signs together to get what he wants, like “eat more,” “more cracker,” “more milk please,” etc.:

  1. Mama
  2. more
  3. milk
  4. eat
  5. tired
  6. water
  7. all done
  8. baby (it’s SO cute!!)*
  9. thirsty*
  10. dog*
  11. Dada*
  12. please*
  13. thank you*
  14. hat*
  15. ball*
  16. cracker*

(* denotes it is a brand new sign from last week! It seems like I am missing a few, but I can’t think of them right now.) He will try just about any sign I show him, so I’m trying to expand his “vocabulary” while he is still a sponge, yet maintaining the ones he knew before. Naomi and I have started signing the song “Father, I Adore You” to him, and he will roll his hands around trying to copy us! It is SO good to be able to communicate with him more!!

3) His siblings have taught him a new game too. They will ask him, “Where do you want to go?” and he will emphatically point and say, “Dat dey!!” to which they will run with him in their arms, in whatever direction he indicates. 😀

IMG_6018

4) He can now place the rings onto his stacker, and tonight at dinner, he was stacking the coasters up on top of his cup! He also puts the balls into his ball popper  (it only had a small ball-sized hole) and can almost hit the plunger hard enough to start it.

While eating meals, he has figured out how to hold his cup completely on his own, and then set it down in the designated circle on the high chair tray! He loves to do it because his siblings all clap for him, so he claps too!

IMG_6277

I ordered a new toy for him, and it came in the mail today. I can’t wait to introduce it to him and see how he does! I’ll try to take pictures!

5) He is also “reading”! He has been using Little Reader through Brillkids, and I really didn’t think he was getting much out of it. I have the iAccess with his account, and we use the iPad mostly, so it’s touch screen. He is now tapping the “page” to turn the “page.”

ALSO, at the end of each section is a game time. I usually skip through that pretty quickly, because I assumed he couldn’t do it. Well, one day, I let him try, and he picked the right response! It prompts him to respond such as “Touch the pig.” AND HE DID IT!! I was SO surprised! Joey is using Little Reader too, and Seth will crawl over to him and take the iPad away for himself! It is just amazing how much this kiddo LOVES to learn!!

IMG_6074

Ok, enough bragging for now! I need to get some sleep so I can keep up with him!

May the Lord bless you and your family!

Ds Awareness: Day 7

Posted on by
Meet Sam!! He’s 20 months old.Biggest challenge DS has brought to our lives: The ever-present worry in the back of our minds over medical issues that can come along with DS.

Coolest thing: The way he approaches people with unbridled glee! He acts like any random person is his best friend in the whole world, and he smiles at them with his whole body and flirts shamelessly. His enthusiasm is contagious!

Grace’s note: Seth and & I were blessed to meet Sam’s mom, Cathleen, and Sam! We had an enjoyable visit, and I am looking forward to meeting her again in November! Now that the boys are much more mobile, it should be a blast! I’ll be sure to post pictures in late November, so be on the look out!1381018_10151696259298034_1719068896_n