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!

An IQ score is, after all, just a number. It does not reflect the ability for a child to have a wonderful, fulfilling, and successful life. And it does not measure equally important attributes such as creativity, personality, perseverance, and life experiences.

This myth that all children with Down syndrome are mentally retarded comes from the time when most children with Down syndrome were placed into institutions where they did not receive the appropriate medical care, nurturing, education, or therapy. We now know that any child placed in these conditions will not thrive! Our kids were never given a chance.

With improved medical treatments, therapy techniques, and methods of teaching, IQ scores continue to rise. We should not place limits on our children, because we don’t know the potential of people with Down syndrome. The possibilities are endless.

The possibility of a normal IQ does not mean, however, that we can sit back and hope our kids do great. We still must work hard to ensure our kids reach their developmental potential. It is crucial that early education begin as soon as possible, because there is a window of opportunity when our kids have the greatest ability to learn; from birth to age five, when brain development is at its peak. It actually becomes more difficult to learn after the age of five. Ironic, isn’t it, that this is the age we start school?

I found this very overwhelming when Ella was born. Not only did I have to take care of a new baby, but I had to learn about Down syndrome and research how to teach my baby. And I had to figure it out before that window of opportunity for maximum brain development closed. I felt like I was racing against the clock to teach Ella as much as possible before she turned five.

I don’t like any of the myths about Down syndrome, but I find this one especially concerning. If parents believe their child is destined to be mentally retarded – that their child can not learn – what incentive do they have to begin teaching baby immediately? I fear many parents will accept this myth and therefore not begin the appropriate care that could actually increase their baby’s intelligence. How sad for both the family and baby if baby’s entire life is limited over a myth!

While I often consult with families about medical concerns, my favorite consults are the ones where I get to show a family what they can easily do each day to improve their child’s development. I love getting to know the parents and watching baby grow and thrive. It is extremely rewarding for me to take what I learned to make my own daughter successful and share it with others.

Please don’t hesitate to contact me if you want to learn how you can teach your baby with Down syndrome. The best gift you can give your baby is the gift of a successful future. I’d love to show you how to do everything possible to help your child learn. Click here for  a video testimonial regarding obtaining a consultation.

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

Chances are pretty good you could find an assortment of sugars and sweeteners on your table. Those could be used to make “SWEET TEA”. But it just isn’t the same. First you must decide on yellow, blue, pink, raw, or brown varieties. Then you have to decide how many to use to achieve the appropriate level of sweetness-each variety is different, after all. Opening those tiny parcels is messy. Then the mixing starts. With luck you will have a spoon or even a knife on hand. If not, you are left attempting to stir using a flimsy straw. Using real sugar? Be prepared to stir until tomorrow if you want it to dissolve in your iced-cold drink. The dreaded taste-test often reveals your chemistry project still isn’t sweet enough. Go back to step one.

Here’s your health advice. Sweet tea has a lot of calories. One example from a well-known restaurant has 130 calories in 16oz of tea. That is about 7 teaspoons of sugar, which is approximately the same as cramming 2 and ½ cookies into your glass. Add more calories if they keep coming around with refills. All of that sugar takes away from the healthful benefits of tea.

So can you make your sweet tea healthier, aside from eliminating it completely? This is where taste buds come in. You don’t like un-sweet tea, you say. Well, was there ever something you disliked as a child but now eat? Taste buds can, and do, change. The rate of change has many variables and is different for each person, but averages 2-3 weeks. You can learn to like un-sweet, or less-sweet tea! The next time you order tea, ask for 75% sweet mixed with 25% un-sweet (The wait staff loves this.). It is not an exact science, but you will be consuming less sugar and fewer calories. Drink your tea this way until you are brave enough to go for a 50-50 mixture (you just cut your calorie intake in half!). Your next step is 75% un-sweet topped with 25% sweet. Once you have gone all the way to un-sweet, taste a 100% sweet tea. Expect to grimace with shock at the sticky, syrupy sludge.

I quit drinking sweet tea about three years ago. Occasionally I still treat myself to a 75 % un-sweet/25% sweet mix of tea. I learned not all tea is the same; like wine, there are different taste-profiles and quality. Most of the common super-market teas in tea-bags are the lowest quality tea, and don’t have good flavor unless you mask it with sugar. A high-quality, loose-leaf tea  is a totally different experience. I suggest you start experimenting with new teas while you are weaning from the sweetened tea. Most malls now have tea stores where you can sample both hot and iced tea.

Enjoy!

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

-February 4, 2013
-Linda Orso (Executive Director at Down Syndrome Association of Greater St. Louis ) worked directly with Dr. Julia at Dr. Julia Kinder for many years

Yes, it is possible for children with Down syndrome to have normal intelligence.  And Early Intervention (providing nurturing, therapy and teaching) has been shown to increase a child’s potential. But here’s the thing many parents don’t realize – the most optimal time for a child to learn is before the age of four or five years of age! Yes, before a child goes to school! It is crucial that babies with Down syndrome begin learning very soon after birth, with special techniques.

This means it is up to the parents to learn how to maximize their child’s development not only by teaching their child, but knowing what not to do which may limit the child’s success.

A consultation with Dr. Julia Kinder can save you time by showing you exactly what you need to do, when to do it, and how. Because babies with Down syndrome should start learning by age 3 months, many parents find it stressful and overwhelming to figure out what they must be doing.

Let Dr. Kinder help you easily maximize your child’s development and decrease your stress and worry.  Contact her for details at julia@juliakinder.com

Raising any child has its’ challenges. But now you have to figure out not only how to take care of a baby, but a baby who has Down syndrome. You don’t know where to start, what to do, or how to feel. You have more questions than answers.

Finding accurate and updated information on Down syndrome can be very time-consuming. Information is scattered about in different sources: websites, books, organizations, and from different doctors, therapists, and teachers. You must beware of wrong information.

Dr. Julia Kinder is mom to Ella, an eight-year-old child who is thriving with Down syndrome. Dr. Kinder is a board-certified family practice physician. Most importantly, she is a friend who listens. She has the unique perspective and experience to show other parents how to raise a successful child with Down syndrome. Dr. Kinder has helped thousands of other families, and can save you time, money, and worry while creating a roadmap for you to easily care for your child.

You don’t have to go through this alone. Whatever you are feeling or thinking – Dr. Kinder understands because she has been there. You can ask her absolutely any question that is on your mind. Find trusted answers and solutions quickly and easily, so you can go on with enjoying your new baby!

Each consultation with Dr. Kinder is tailored to the unique needs of the family and child. Email Dr. Kinder for details: julia@juliakinder.com

But maybe the birth of this grandbaby has been a little different -there’s also the news that this baby has a diagnosis of Down syndrome. It can be a confusing time with mixed emotions. As the grandparent, your role is not only to spoil this baby, but also to take care of your child – baby’s parent. And perhaps baby’s parent is having a difficult time knowing what to think about this diagnosis. On the one hand, everyone has been so excited anticipating the arrival of this infant who looks so happy, perfect, and content. On the other hand, no one in the family really knows what a child with Down syndrome is like. What are the implications of this diagnosis? What will baby be like? Will he have struggles along the way? Will he be healthy? There are more questions than answers about what life will be like now.

Ella’s grandparents, and great-grandparents, played a crucial role in our family after Ella’s birth. They were there when we cried, when we needed a break, and for endless trips to the grocery store when we needed to try yet another bottle. And they were there for all the joys – when Ella rolled over, took her first steps, and went off to kindergarten. Their love for Ella is unconditional. Ella’s great-grandmother said something to me that I’ll never forget, and that brings me pure happiness: “I know I’m not supposed to have a favorite grandchild, but there is just something about Ella that is so special and amazing – she is my favorite of all my grandchildren.”      -Dr. Julia

For eight years, Dr. Kinder has been helping new families start out on their journey with a child who has Down syndrome. She is on a mission to fill the void that exists between receiving the diagnosis and actually knowing what to do and when. She realizes there is a crucial piece of information missing between when doctors give the diagnosis and when parents go home to figure out on their own what they need to do for this baby. Dr. Kinder knows this gap exists because even with her medical training, she was not prepared to raise a child with Special Needs. She found it very difficult to find a reliable and honest source of information. She wanted another mom – a friend – that she could talk to about anything she was feeling or thinking. She wanted practical advice on what to do each day. From her years of experience counseling other families, and from her own personal experiences, Dr. Kinder knows how vital it is that grandparents also have this information about Down syndrome.

Your consultation with Dr. Kinder includes:

-Initial informational email from YOU to Dr. Kinder. You will first send an email to Dr. Kinder with general information she will need before your consult

-One-hour phone consultation with Dr. Kinder at a time which is convenient for both of you. Your conversation will be informal and guided by your questions, concerns, and needs.

-Follow-up email from Dr. Kinder with the main points from your conversation, so that you don’t need to take extensive notes during the phone call.

Dr. Julia Kinder, family practice physician and mom to Ella (who has Down syndrome), knows just what you are going through. When she learned of Ella’s diagnosis, she felt scared, alone, and had no idea what to do first. Even her medical background did not prepare her for parenting a child with Special Needs. She became frustrated trying to find someone to just listen to her most honest emotions and to tell her what it was really like to have a child with Down syndrome. She needed information beyond what other doctors told her and what she found from other sources. She needed a friend.

For eight years, Dr. Kinder has been offering that kind of support to other families. She is on a mission to fill the void that exists between finding out your child has Down syndrome and learning to THRIVE with the diagnosis. Dr. Kinder can answer your questions and guide you on what to do next.

Your consultation includes:

-Initial informational email from YOU to Dr. Kinder. You will first send an email to Dr. Kinder with general information she will need before your consult

-One-hour phone consultation with Dr. Kinder at a time which is convenient for both of you. Dr. Kinder understands that sometimes you need a friend most after regular business hours! Your conversation will be like talking to a friend- feel free to ask anything and to admit to how you are truly feeling. Dr. Julia will not make any judgements and has probably had all the same thoughts and emotions. Dr. Kinder will help guide you through this experience of finding out your baby has Down syndrome. This conversation will focus on questions about Down syndrome and what it’s like to be a parent of a child with Down syndrome.

-Follow-up email from Dr. Kinder with the main points from your conversation, so that you don’t need to take extensive notes during the phone call.

You don’t have to go through this alone. Let Dr. Kinder help. This is an unexpected moment in your life that could potentially change the course of your life. Don’t waste a moment – there is much to consider for yourself, your family, and for your new baby. Dr. Kinder will show you The UPside™.

Dr. Julia Kinder, family practice physician and mom to Ella (who has Down syndrome), knows just what you are going through. When she learned of Ella’s diagnosis, she felt scared, alone, and had no idea what to do first. Even her medical background did not prepare her for parenting a child with Special Needs. She became frustrated trying to find someone to just listen to her most honest emotions and to tell her what it was really like to have a child with Down syndrome. She needed information beyond what other doctors told her and what she found from other sources. She needed a friend.

For eight years, Dr. Kinder has been offering that kind of support to other families. She is on a mission to fill the void that exists between finding out your child has Down syndrome and learning to THRIVE with the diagnosis. Dr. Kinder can answer your questions and guide you on what to do next.

Your consultation includes:

-Initial informational email from YOU to Dr. Kinder. You will first send an email to Dr. Kinder with general information she will need before your consult (details available after purchase).

-One-hour phone consultation with Dr. Kinder at a time which is convenient for both of you. Dr. Kinder understands that sometimes you need a friend most after regular business hours! Your conversation will be like talking to a friend- feel free to ask anything and to admit to how you are truly feeling. Dr. Julia will not make any judgements and has probably had all the same thoughts and emotions. Dr. Kinder will help guide you through this experience of finding out your baby has Down syndrome. This conversation will focus on questions about Down syndrome and what it’s like to be a parent of a child with Down syndrome.

-Follow-up email from Dr. Kinder with the main points from your conversation, so that you don’t need to take extensive notes during the phone call.

You don’t have to go through this alone. Let Dr. Kinder help. This is an unexpected moment in your life that could potentially change the course of your life. There is much to consider for yourself, your family, and for your new baby. Dr. Kinder will show you The UPside™.

Contact Dr. Kinder: julia@juliakinder.com

Dr. Julia Kinder, family practice physician and mom to Ella (who has Down syndrome), knows just what you are going through. When she learned of Ella’s diagnosis, she felt scared, alone, and had no idea what to do first. Even her medical background did not prepare her for parenting a child with Special Needs. She became frustrated trying to find someone to just listen to her most honest emotions and to tell her what it was really like to have a child with Down syndrome. She needed information beyond what other doctors told her and what she found from other sources. She needed a friend.

For eight years, Dr. Kinder has been offering that kind of support to other families. She is on a mission to fill the void that exists between finding out your child has/may have Down syndrome and learning to THRIVE with the diagnosis. Dr. Kinder can answer your questions and guide you on what to do next.

Your consultation includes:

-Initial informational email from YOU to Dr. Kinder. You will first send an email to Dr. Kinder with general information she will need before your consult

-One-hour phone consultation with Dr. Kinder at a time which is convenient for both of you. Dr. Kinder understands that sometimes you need a friend most after regular business hours! Your conversation will be like talking to a friend- feel free to ask anything and to admit to how you are truly feeling. Dr. Julia will not make any judgements and has probably had all the same thoughts and emotions. Dr. Kinder will help guide you through this experience of wondering if your baby has Down syndrome. Dr. Kinder will tell you, in her experience, what it is like to have a child with Down syndrome, and give you general information on Down syndrome.

-Follow-up email from Dr. Kinder with the main points from your conversation, so that you don’t need to take extensive notes during the phone call.

You don’t have to go through this alone. Let Dr. Kinder help. This is an unexpected moment in your life that could potentially change the course of your life. There is much to consider for yourself, your family, and for your baby. Dr. Kinder will show you The UPside™.

Contact Dr. Kinder directly: julia@juliakinder.com

But what you didn’t dream of, nor could have imagined, was that now you would be wondering if your baby has Down syndrome. There were some things that happened at birth that made your pediatrician decide to order genetic tests – and the results will likely take an entire week. How can you possibly wait that long to know if your baby has Down syndrome? It feels like torture.

I will never forget that week of waiting for the genetic testing. I did not leave my house – I barely left bed or the bathtub, keeping the phone with me at all times, in case the pediatrician called. It was impossible to eat or drink, and I felt this weird detachment from Ella. It was the longest week of my life.  -Dr. Julia

Should you start reading about Down syndrome? Is there something special you should start doing for your baby? Or can you just treat this baby like any other for the next week? Do you tell family that there could be something “extra” that came along with this baby?

One thing you should do is call a friend who has been there. Dr. Julia Kinder has helped many families through this unusual time. Do not miss out on enjoying your baby while you wait for test results. Call Dr. Kinder if you need help.

Your consultation with Dr. Kinder includes:

-Initial informational email from YOU to Dr. Kinder. You will first send an email to Dr. Kinder with general information she will need before your consult

-30-minute phone consultation with Dr. Kinder at a time which is convenient for both of you, and as soon as possible.  Your conversation will be informal and guided by your questions, concerns, and needs.

I offer a unique service tailored to the needs of each family. Unlike the isolated and impersonal information a family gathers from their pediatrician, obstetrician, therapists, teachers, or books and other organizations, I put all of the pieces of the puzzle together and show families exactly what they need to do to raise a child with Down syndrome who thrives and becomes as independent as possible. I gather in-depth information about the child and family and create plans for maximizing the child’s development, while making life as easy as possible for the family.

Some families have only one specific question when they first contact me, and I may be able to provide solutions in a one-time phone call.On the other end of the spectrum are families who want me to visit their home to show them hands-on techniques for baby. Some families need my help for a month, some for a few years. And there are many variations of services in between.

For these reasons, it’s impossible for me to quote a price without having a better understanding of what a family needs and what is most important to them. Setting black and white fees like one would see for a product is difficult; how does one place a price on the success of a child? However, after nearly eight years of consulting with thousands of families, I have come to fees which are reasonable, appropriate for the high-quality and personal service I offer, and which take into account the budgetary restraints of each family.

If you have questions about your child or grandchild with Down syndrome, if you want to do everything possible to ensure he/she is successful in life, or if you just need someone to talk to, don’t let the worry of an unknown fee stop you from contacting me. Our first conversation if free of charge so that I can better identify what you need. Once I determine how I can help you, we will discuss your options and fees for those options. I have flat-rates with no hidden charges. I do not charge by the hour, so you needn’t worry about each minute we spend together.

I’m here to help because I care about families who are going through what my family went through. Contact me with any questions. I look forward to hearing from you.  You can email me directly: julia@ juliakinder.com

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.

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!

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!