Another UPside of Down syndrome? Those cute, petite noses. I am so thankful Ella did not inherit the nose of either my mother’s family (German descent) or of my father’s American Indian ancestry.

However, having a tiny nose means also having tiny nasal passages that more easily become clogged with – well, you know – snot. It’s almost a daily battle in our household. When Ella gets stuffy, her speech becomes difficult to understand. The skin below her nose becomes raw and painful.  Her lips crack from breathing through her mouth. She doesn’t sleep well, leading to daytime drowsiness which affects her school performance. The poor kid just doesn’t feel good.

Long-term nasal congestion and chronic upper respiratory infections in our kids can also lead to dental decay, facial skin irritation, tongue protrusion, speech delays, and even stomach upset. A snotty nose may seem like mostly an irritation (to our kids and to us- the parents!) but it should be taken seriously.

Ella started using a Neti Pot when she was about five years old. At first, I thought there would be no way she would tolerate it. And it did take a bit of time (and bribery) for her to get used to it. But now, Ella asks to have her nose cleaned out. Nasal irrigation has made a dramatic difference in Ella’s life.

I asked my good friend Dr. Ryan Sullivan to give you more information about using nasal irrigation for your kids. He is board certified in Internal Medicine and Allergy/Immunology, with a practice in the Nashville area. And most importantly – he has his own kids with stuffy noses. Please post any additional questions you have for Dr. Sullivan.                             -Dr. Julia Kinder

 

If you have a child then you are familiar with the challenges of treating runny, stuffy noses. There are many treatment options available but it can be hard to choose one. For many parents, giving medications to their child is a concern and I am often asked about alternative treatments for allergies, sinus infections, and colds.

One natural solution that I highly recommend is nasal and sinus irrigation. The most well-known version of this treatment is the Neti pot. The Neti pot originally comes from an ancient yoga medical tradition but it has been used in many cultures to treat nasal symptoms for centuries.

Basically, nasal irrigation flushes out the nose and sinuses with a large volume of salt water. It removes allergens, bacteria, and irritants. It also helps remove thick, sticky secretions that may be clogging the nose or leading to drainage. Not only does it remove unwanted debris, the saline solution in the Neti pot also soothes and moisturizes the nose. This is important in the winter, as the dry air can lead to nose-bleeds.

While the Neti pot has been around for thousands of years, modern technology has improved on the method in some useful ways. Ancient cultures did not always use water to irrigate the nose. Some cultures were known to use urine or boric acid in the Neti pot. I am as fond of ancient traditions as anyone but I recommend using distilled, sterile, or previously boiled water to make up the irrigation solution. Also, we now have simple plastic squeeze bottles available that can provide a bit more force and flow through the nose. You can find one at any pharmacy. Whether you decide to use the Neti pot or a plastic squeeze bottle will be based on personal preference, as they are both effective.

Be sure to not use plain tap water to irrigate the nose. It is too dilute and will irritate the lining of the nose. To make a proper saline solution, add a half a teaspoon of salt to 8 ounces of lukewarm water. Whatever salt you have in your pantry will work just fine, including iodinated salt. If you like you can use a half-teaspoon of baking soda instead. Some people will prefer one over the other, but either way is fine.

Next, tilt the head forward and slightly sideways and place the nozzle in the upper nostril. Do not plug up the other side of the nose; simply let the solution drain out of the lower nostril. Do this over the sink or in the shower as this procedure can make a mess. Flush until the secretions are clear in color. Do this once or twice a day when nasal and sinus symptoms are active. Once symptoms resolve, I recommend performing nasal rinses 2 – 3 times per week as a maintenance regimen. Think of it as good sinus hygiene.

Also, it’s important to properly care for your nasal irrigation device. Either wash the device thoroughly by hand, or put it in the dishwasher if it’s dishwasher-safe. Follow by drying the device completely after each use.

Treating a runny, stuffy nose may not seem all that important but don’t forget how important the nose was to Samantha Stevens on the TV show “Bewitched”, or to Rudolph the Reindeer. While your children may not need their noses for casting spells or guiding Santa’s sleigh, we can make a big difference in their lives if we can help make their noses happy.

Contributed by Dr. Ryan Sullivan, Board-Certified in Internal Medicine, Allergy & Immunology. 



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My Barriers to Ella’s Independence

One of the first concerns I had when given Ella’s diagnosis of Down syndrome was Ella’s independence growing up and ultimately as an adult. While taking independence for granted with my other children, I wondered about Ella’s ability to complete common, daily tasks.  Would she dress herself? Do laundry? Prepare meals? Count money?

As soon as Ella could crawl, I began preparing her to become self-sufficient by creating opportunities for her to help around the house. In a lower kitchen drawer, I placed her healthy snacks and bowls.  She learned to pull the drawer open, select the snack she wanted, and pick the bowl I asked her to find (Ella; get the big yellow bowl.  Ella; find the small green bowl). As her age and fine-motor skills advanced, she would also open the snack container that I selected specifically for building small hand muscles. She helped me sort the  laundry and recycling, clean the house, and accompanied me to the grocery store where I explained each item purchased. No daily task was too small (replacing the toilet paper roll) or too big (vacuuming out the car); I considered every task required to be a self-sufficient adult and broke those items down into steps that I taught Ella. My mom thought I was crazy.  “Just let Ella be a kid”‘ she said often. But I felt that independence was one of the greatest gifts I could give my daughter.

As such a strong advocate of independence, I was shocked this week – on two occasions – to realize that I, of all people, have placed some barriers to Ella’s independence.  It’s funny, really, that my tendency towards perfectionism ( I can’t help it that I’m happier when my towels are folded a certain way.) or phobia of germs (I blame it on the years of biology classes) would interfere with Ella becoming more grown-up.  And blame my Dad for my insistence that one not waste water.

At the mall this week, Ella insisted on using the restroom alone. I was mortified. She has perfect potty etiquette, of course, instilled in her by my years of training on how we contract germs. But what if the back of her legs touched the toilet while sitting on the paper she surely placed on the seat? What if she didn’t wipe properly? What if she flushed not with her foot but with her hand? It creeped me out.  But as she stood there with hands on hips, glaring at me, I realized she was perfectly capable of going into the restroom alone.  I gave in, though I stood outside the door listening in case she needed help.  She had a lovely time on her own, saying hello to the other ladies, asking their names, and basking in the warmth of the hand-dryer.

Tonight, Ella asked to shower on her own.  She has been practicing this skill for over a year, but I still hesitated. What if she used too much shampoo? What if she didn’t completely rinse the conditioner, leaving her hair dull and heavy? My dad’s voice echoed in my head “what if she wastes water?”  Realizing I was limiting Ella, I forced myself to the other side of the house to avoid the temptation to peek in upon her.

I have to laugh at myself.  I recognize and accept my idiosyncrasies and habits and obsessions (you really shouldn’t place plastic dishes in the dishwasher). I never thought, however, that I might be the one to place limits on my child.

I believe that no limits should be placed on our children with Down syndrome.  Often, the only limits they have are the ones placed upon them by others. Consider that when it seems a limit is reached, perhaps your child can go beyond that barrier if you are creative in finding a new teaching method or solution to the problem.

Ella is very independent. She pushes me every day to let her do more. Sometimes I hesitate, thinking “she isn’t old enough” to do something. But as long as she is safe, I remind myself to let her keep growing and learning and experiencing. Even if she does get a germ or waste a bit of water.  Sorry Dad.

 



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Tomorrow is the BIG DAY! World Down Syndrome Day is very important for the UPside. First, it is a chance to raise awareness about The UPside of Down and tell the world how great our kids are. Second, it is a day when we celebrate our kids. Third, families of kids with Down syndrome deserve a day of recognition and celebration for all our hard work.

It also marks the one year anniversary of the official launch of the UPside of Down. HAPPY BIRTHDAY TO THE UPSIDE! It’s been an amazing year with families connecting from all over the world. We have members from the United Kingdom, Ireland, Canada, India, Australia, New Zealand, Mexico, Brazil, The Philippines, Hungary….who did I miss?  WELCOME!

I have homework for you. Don’t worry; it’s a neat assignment. Here are the TOP FIVE things I’d like for everyone at The UPside to do tomorrow:

1. Raise Awareness.  Educate at least one person about Down syndrome. It could be someone you know, or even more fun – tell a stranger! Some options:

-Go out to eat with your family. Tell your waitress it is World Down Syndrome day and you are celebrating. Ask if you get free ice cream.

-Go to the grocery store. Tell the clerk “Did you know that a lady with Down syndrome swam the English Channel?”

-Tell your child’s teacher “Did you know that because of awesome teachers like you, I.Q. Scores for kids with Down syndrome are rising?”

2. Celebrate your Child with Down Syndrome. Do something very special for your child.

-take a treat to your child’s school class

-go to a movie

-give your child a gift

3. Celebrate your Amazing Family. This is another holiday in my book.

-cook your favorite meal

-invite family over for drinks and appetizers

-go to your favorite restaurant. Again, ask for free ice cream

4. Celebrate YOU and all you have accomplished in raising your child. Treat yourself. You deserve it. My plans? I work clinic in the morning, so I’m wearing my UPside t-shirt and showing my patients photos of Ella. Then I’m headed to Barnes and Noble for an hour alone. After ordering my venti chai tea, I’ll browse fiction books and image what it would be like if I had time to read one.

5. Finally, after the partying is done, I want you to post your assignment results on our FaceBook page. Photos, stories, the events of your day – share it so we can all see how we managed to change the world in just one day.

HAPPY WORLD DOWN SYNDROME DAY!!

Celebrate World Down Syndrome Day!

 



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Thoughts from Lanie:

I am not going to lie… I cried a lot during my pregnancy. A lot. I was scared and wondered why my daughter was the one who had Down syndrome while people all around me were having these adorable, perfect, and healthy little babies. I can honestly say that having Annabelle is 1,000 times better than being pregnant with her. My tears have dried up. They have been replaced with a commitment to love her, teach her, and grow with her. I always knew that I would love her, but after she was born, I was reminded of how unconditional it would be. I am truly looking forward to my future with her. I can’t wait to watch her grow and thrive.

So far, life isn’t any different having a baby with Down syndrome. We have had a few extra doctor appointments since Annabelle does have two holes in her heart that will need repair, but other than that, nothing has changed much. Our life is good, and happiness is still a choice, just like it was before she was born.

For the past few days, I have looked into her precious eyes and know that she needs me. She needs me for comfort, for food, and for love. And, honestly, I need her too. She brings me joy. Her smile melts my heart and fills that empty place in my soul that was so terrified that my life would never be the same. Today I am thankful for all three of my wonderful children. They keep me grounded. They give my life purpose.      -Lanie. mom to Annabelle

Baby Annabelle

 



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Thoughts from Lanie:

I am often reminded of the popular saying of “replace your expectations with gratification.” I thought about this several times when I was pregnant with Annabelle. I thought about how lucky I was to be able to have a baby as some couples try for years and years and never succeed. I thought about how lucky I was that she only had Down syndrome and not a more severe diagnosis that would take away her enjoyment in life. I also thought about how blessed I was to be a citizen of the United States instead of another foreign country that doesn’t allow for a free education system for all children.

Since Annabelle was born, this quote still resonates with me, but in a different way. I am very thankful for her. I know that she was meant to be my daughter. However, I still have high expectations. I am not giving up. I am not throwing in the towel. I look to her future with grate optimism and an understanding of the extra work that it may take for her to graduate high school, go to college, get a job, etc. I will not set low standards for her. I will be by her side every step of the way to assist in making her dreams come true and reaching her full potential. I am up for the challenge and welcome this unexpected journey in life.       -Lanie, mom to Annabelle

 

Baby Annabelle, exceeding all expectations



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Julia Kinder

What I Love About Down Syndrome

February 17, 2013
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I spent an hour on the phone yesterday with a pregnant couple who just learned their baby will be born with Down syndrome. They were experiencing the mixed emotions we all had when first receiving the diagnosis: upset, worried, nervous, confused, sad, uncertain, lonely, afraid, and even angry. They had many questions about Down syndrome and what their child would be like. They wanted my advice on how to prepare for baby’s arrival, and practical tips for raising their child.

During this type of consultation, with a family recently learning their baby has an extra chromosome, I encourage parents to accept whatever feelings and thoughts they have. I answer all their questions that can’t be answered by their obstetrician or pediatrician or by a book or website. I give open and honest answers to the questions only another mom who has been there and friend would understand. All parents had initial thoughts that seemed horrible and made us feel guilty for sharing. Many of us didn’t find anyone to talk to, and instead isolated ourselves through those first hard days, weeks, or even months. These times can be so much easier with someone to guide you.

I explain that most of those worries and negative feelings are the result of the myths about Down syndrome that unfortunately still exist in our society. Many parents come to me expecting the absolute worst case scenario. Sadly, some of them have received this wrong and gloomy information from their doctor.

I share with these scared new parents the good stuff about Down syndrome. No, I don’t rosy-coat things or pretend there won’t be obstacles. But our kids with Down syndrome are more like other kids than they are different, and the amazing things and daily joys deserve attention.

I thought it would be very helpful to new parents to hear from all of you the things you love about Down syndrome. I’m going to list a few of mine, too. Please add your comments about The UPside of Down™ to show these families that it will be ok and to help them move past grieving to a place where they can enjoy their baby. New babies with Down syndrome NEED  for their parents to have acceptance and  joy, so  parents are able to provide all the appropriate care and nurturing.

I can’t wait to read your comments! Feel free to share everything from silly and minor to grand and full of wisdom.

Some of the Things I Love About Down Syndrome:
-That extra space between the first and second toe, which is perfect for cute flip-flops. I’m jealous, because I can’t stand to wear shoes with that thing between my toes.

-Appreciation for every stage of development. With my twin boys, I of course noticed the major milestones like rolling over, walking, and first word. But I didn’t pay as much attention to all the other finer accomplishments like stacking blocks or putting together a 3-piece puzzle or learning to open a door. With Ella, I paid attention and rejoiced at every  single thing she did.

-Finding out who my true friends are. Surprisingly, when Ella was born and we shared the news that she has Down syndrome, some of my friends avoided me, and a few completely lost touch. I don’t understand it, but I don’t need to. I am now surrounded by the best of people. Somehow Ella weeded out the dandelions.



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We love to share photos of our kids with Down syndrome. Why? Well, mostly because they are so darn beautiful. Second, as our tribe grows we enjoy getting to know each other through our on-line discussions and photos of our families. It’s nice to see who you are “talking” to!

But we also have a responsibility to change the image of Down syndrome in our society. That is one of the goals here at the UPside, and I’ve written much on just this one issue. The world needs to see positive images of our kids and Down syndrome.

Get creative (hearts, flowers, red, pink…) and take a photo showing love for your UPside Valentine. Post the picture on our FaceBook page.

The picture with the most “likes” by Friday Feb. 15 at 10 am CST gets a gift from me!

I can’t wait to see your latest images!



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Julia Kinder

I’ve had too much therapy!

February 8, 2013
posted by
 

Before any rumors start, I’m talking about 8 years of attending multiple types of therapy sessions with my daughter, Ella. You know – PT, OT, ST, MT, DT. Did you think I was referring to my own personal therapy?

Ella wants to learn to snap her fingers, and we’ve been trying to teach her how for a few weeks now. I was getting a bit frustrated until it occurred to me what a great fine-motor exercise this was. Then I felt great about the time I had invested because it wasn’t just finger-snapping we were working on. We were improving Ella’s handwriting and ability to do things like sort the cashews out of the mixed nut container. I was excited to discover another fun way to strengthen her fingers.

Yeah- excited. Yeah- fun. Oh how my brain has changed since Ella arrived! Working on goals is ingrained into my head; I seek out ways to achieve them in the simplest of life’s daily events. And I enjoy it. What has happened to me? Maybe I need to get out more? Or perhaps I need my own type of therapy. There you go again thinking the worst. I meant wine-therapy!

 



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After I received the diagnosis that Ella has Down syndrome, I vowed I would give her every opportunity possible – maximize her potential. Not that it’s different from what any parent wants for their child. But when you have a child with Down syndrome, there seems to be more of an urgency to start teaching your baby, just in case that child does need extra time or help to learn a skill.  And I don’t just mean teaching baby to read or do math, but to teach developmental milestones and also skills for daily life.

It sounds contradictory for me to say I expect Ella can do anything she wants, with no limits, while on the other hand I admit I have spent time teaching her basic things like how to do laundry, ride an elevator, or order her meal at a restaurant. Perhaps I didn’t need to teach her – she may very well have picked it up on her own. But I guess I don’t want to take any chances when it comes to Ella’s independence. I haven’t made an effort to teach that type of skill to my twin boys. I guess I assume or take for granted their abilities. Again, it’s not that I think Ella is less capable. It’s very difficult to explain the conflicting thoughts I often have because of the “DS thing.”

So I set out to learn everything I could about Down syndrome, development, therapy, and teaching kids. It was a lot of work. I researched, went to conferences, talked to other parents, read books, took classes. I spent hours, days, even weeks learning. It was very hard to piece together all the pieces of the puzzle to figure out what I needed to do every single day to maximize Ella’s potential. I needed practical, step-by-step tips on how to raise Ella – that type of information didn’t exist. I had to create my own road-map. The information I needed was not in one place, but scattered about. Worse, some of the information was wrong. Two things scared me. First, I was afraid of what I didn’t know. What if there was something Ella really needed to be doing, or not doing, but I wasn’t aware of it? If I had at least heard of it, I knew I could figure it out. But what if I had no clue? For example, I didn’t know for a very long time I could damage Ella’s finger joints simply by the way I dressed her. Ahhhh! When I did realize this, I panicked wondering if I had already caused damage.

The second thing that worried me was the amount of time (years) it was taking me to gather information and knowledge. What we teach our kids in the first year of life is correlated with I.Q. The first four years of life are THE BEST time for kids to learn. Ella couldn’t wait for me to figure out what she needed, she needed it NOW.  I felt I was always racing against the clock. Most of the brain is already developed by the age of five – when we send kids to school, ironically. If I wanted to maximize Ella’s brain development it had to be now. I stayed up late many nights to figure out what I needed to do.

And I did figure it out. Ella started reading at 18 months. She hit all developmental milestones on time or ahead of time. She started kindergarten a year early because she was doing so well. She’s now in a mainstream 3rd grade class and does not require an aid. All the years of hard work have paid off.

I decided to share my knowledge with other parents, making it very easy and low-stress for them to maximize their child’s developmental potential. I want every child with Down syndrome to do the best that they can, and to have amazing lives!

For years I have been showing other parents the tips, techniques, and tricks I used to ensure Ella’s success. The best time to start with any child is – as soon as possible! But it’s never to late to begin. Consultations include phone  conversations, emails, and texts. FAce-to-face visits are often possible. The length of time needed varies. Each consultation is tailored to the needs of the family.

I absolutely love helping other parents. I want new families to be able to focus on enjoying their new baby, without worrying about DS stuff. I make it easy to integrate all the therapy and teaching into your normal, daily routine. Many families struggle with mixed emotions and feeling as if their lives have been disrupted – I show them The UPside.

If I can help you, please email me for more information: julia@juliakinder.com.  You can also check out this short video with a testimonial from a new mom. I look forward to hearing from you.



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Julia Kinder

Baby Annabelle teaching Mom

February 3, 2013
posted by
 

I’m so glad Lanie has sent us an UPdate on Annabelle, even though I know she must be exhausted from the last several days since Annabelle’s surgery. Both mom and baby have been in the thoughts of so many. See her post after my comments. 

Lanie also sent along a picture taken in the ICU, but she admitted she wasn’t sure if we should post it or not. I also gave this some thought, as it can be very difficult to see such tiny little ones so soon after major surgery. I decided to include it for several reasons, though I know that some of you new moms with an upcoming surgery looming over you may find this photo hard to look at. 

I included the photo because I want everyone to realize how resilient babies are to major surgical procedures and that their recovery is usually amazingly quick. Before my son Paxton had surgery (he does not have DS) to his lung and heart, parents tried to make me feel better saying he would do just fine. But it was very hard for me to understand until we had gone through it ourselves. Another positive side to having surgery so young is the child likely won’t remember it.

The next reason I included this photo is it represents something very important about The UPside. We parents have many struggles and stressors but by golly ( I know – outdated phrase used by my grandmother) we stand strong, keep going, hold our heads up, and become better people. As Lanie states so well below, our children make us great. And for that – for all our hard work and worries and challenges – we should be proud!       Dr. Julia

During our stay in the hospital the last few days, I began to think about how frequently I talk about how I want to maximize Annabelle’s potential. While this is true, I think it may be more of a two way street than I had once imaged. Since she has been born, I have begun to realize that she brings out the very best things in me. I have become more patient, more flexible, and more compassionate. Even though I consistently work to support her development, I am confident that I am growing along side of her. She has called me to be a better mom and the kind of person that I had the potential to be. She helps me to know myself better and to prioritize the most important things in life. Annabelle has encouraged me to be a better friend, daughter, wife, and school counselor, and for that, I am forever thankful. Lanie.

Mom and Baby doing great! Our thoughts are with you.



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