MOSAIC MOMENTS

In 2007 Beth and Scott got married. Beth is a special education teacher and so during their wedding instead of party favors for their guests, they donated the money they would have spent on that to International Mosaic Down Syndrome Association instead in honor of the children she teaches. Beth got to know about IMDSA because she is friends with our Research Officer, Kristen Lipscomb Sund.  Beth and Scott both have huge hearts and know that God has a special purpose for their lives. 

Like all young couples, Beth and Scott wanted to begin their family. However, their plans were postponed when they had two miscarriages-the last one in August. 

In December, the day after Beth’s grandmother passed away, she found out she was pregnant again. Of course, they were worried that they may loose this baby too. They didn’t want to tell anyone about the pregancy until they were sure. So, they told their close friends and family and held their breath till they received the first ultrasound at 8 weeks and could see that the baby’s heart was beating.

At 12 weeks, they had another ultrasound and saw some markers associated with Down syndrome. Like all parents, they were concerned. But, still felt relief as they watched their baby’s heart beat and move around.

Time has progressed and they have done more ultrasounds and testing and they discovered that they are having a boy! They have named him Elijah. Elijah is doing well and next week they will have another ultrasound to see how he is progressing. The tests has confirmed that he does have Down syndrome.

As you know, IMDSA is in the midst of Genes Day right now. Our Research Officer, Kristen Lipscomb Sund had made her own Genes Day page to raise money for the great research program that she created for IMDSA. When Eli was diagnosed with Down syndrome, Kristen dedicated her page to him calling it Research for Elijah.  You can view that page and donate for Elijah by clicking here.

It is funny how things happen sometimes.  I am a Christian and in my belief’s, God specially plans everything for a purpose. Beth is a special education teacher. She has had the opportunity to get to know children with Down syndrome through her career. She has learned to understand that having Down syndrome isn’t the end of the world, just something a little different. During her wedding to the love of her life, she remembered all of the children she taught by donating to a very special cause. She would not have known about IMDSA if she was not friends with Kristen who is in her final year now to be a Genetic Counselor. 

Beth has begun a blog about her journey with Eli. You can follow Eli’s beginning here. 

Beth says, “I have always been taught that a child is a child before a disability. Eli is Eli and not simply Down syndrome. He will be loved just as any other child would be and will become an integral part of our family. He will inspire others and teach us every day. Although the road ahead is unknown and scary, Scott and I will get through it and come out on top, especially knowing that we will have a special gift in Eli. We plan of updating this blog regularly to keep our family and friends updated. We have not yet told everyone we wanted about Eli and the challenges that face us. Please keep us in your thoughts and prayers since we are still facing an uncertain next few months!”

Beth, You and Scott and Eli are in my prayers! I know that you are going to be great parents and Elijah is going to be a great son!

The very first piece of inspiration that I read when Tim was diagnosed with mosaic Down syndrome was not Welcome to Holland, but it still gave me inspiration and helped me to know that God had everything specially planned out and 22 years later… I am so glad that I was chosen as Tim’s mom!

(please remember that this was written long ago so it may not be considered completely politically correct)

A Story contributed by Erma Bombeck

This year, nearly 100,000 women will become mothers of handicapped children. Somehow I visualize God  hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes,  he instructs his angel to make notes in a giant ledger.

“Armstrong, Beth, son, patron saint, Matthew.”

“Smith, Marge, daughter, patron saint, Cecillia.”

“Rutledge, Carrie, twins, patron saint…give her Gerard. He’s used to profanity.”

Finally he passes a name to the angel and smiles, “Give her a handicapped child”. The angel is curious. “Why  this one, God? She’s so happy.” “Exactly,” says God. “Could I give a handicapped child to a mother who does  not know laughter? That would be cruel.”

“But has she patience?” asks the angel.”

“I don’t want her to have to much patience or she will drown in a sea of self-pity and despair. Once the shock  and resentment wear off she’ll handle it.” “I watched her today. She has that feeling of self and independence  that is so necessary in a mother. The child I am going to give her has his own world. She has to make it live in  her world, and that’s not going to be easy.”

“But Lord, I don’t think she even believes in you,” God smiles. “No matter. I can fix that. This one is perfect. She  has just enough selfishness.”

The angel gasps, “Selfishness? Is that a virtue?”

God nods, “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman  who will never take for granted a ’spoken word.’   She will never consider a ’step’ ordinary.  When her child says  ‘Momma’ for the first time, she will be present at a miracle and know it!   I will permit her to see clearly the things  I see…cruelty, ignorance, prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute of every day, because she is doing my work as surely as if she were here by my side.”

“And what about her patron saint?” asks the angel, pen poised in mid air.”

God smiles, “A mirror will suffice.”      

It never ceases to amaze me of all the ingenuity that families of children with Down syndrome seem to have. As parents in this special club, we have this common unbreakable bond that sets us apart from others, for sure, but also makes us strong as a group and instantly bonds us as a family.

Think about it…. before you had a child with Down syndrome you would not have known all the people that you do and you would not have know ALL that you do about those people! I have friends, true friends, who live all the way across the world. I love these people as though I have known them my whole life, and yet, for most of them I have never actually met them face to face!

CJ is one of my new friends. She had this wonderful idea of making an afghan and sending it all over the world from family to family so that everyone who has a child with Down syndrome can hold the afghan for just a little while before it goes off to the next family! 

HOW GREAT IS THAT???? 

Things like that choke me up! What a fantastic way to bond with your family! Some, you may not even know. But you all have this common bond with one little extra chromosome. 

So, I asked CJ if we could bring the T21 Traveling Afghan to the conference in Cincinnati. This way, everyone can see it and I would like to take a picture of all the kids at our Kids Konference with the Afghan. 

I will try to bring out some media to talk about the T21 Traveling Afghan and hopefully we can get a story about it! 

This is the kinds of stories that we need in our lives!

A Traveling Afghan that brings families together….. one thread at a time!

Please Visit CJ’s great blog and sign up to receive the T21 Traveling Afghan! You can visit her blog by going to: http://littlemisse21.blogspot.com/

Today, I have to take a little break from my highlighting our Down Syndrome Research & Awareness Conference Speakers . I am just too distracted and I know that maybe the great readers of this blog may have a solution for this serious problem…..

This afternoon, we got a call from a woman in Jamaica. She has a 13 year old daughter with Down syndrome. Her daughter had surgery on her heart when she was 2 years old, and has been on medication ever since then.

The woman is very poor. She barely has money to feed her daughter and the little girl’s father disappeared long ago.She told me that she could only talk a few moments because she had to pre-pay for the minutes that we talked. I asked if she had any internet access thinking we could email one another, but she said she was very poor and had no access to computers.

She told me that her daughter has not had her heart medication since October because she can not afford the medicine. She said that her daughter needed to go to the doctor, but she didn’t have the money to take her. 

She said that her little girl was retaining so much fluid in her heart from the lack of medicine that she was swelling.

She told me that her daughter had a bought of pneumonia a while back and her tongue was blue because of the lack of oxygen. 

Her voice quivered a bit when she told me that she was afraid and that her daughter’s tongue was blue again, so she knew that she was getting very sick without her medicine. 

I asked her if her daughter’s tongue was blue right then as we were talking, so that I could clarify the situation. 

But then her phone died. 

I am hoping that she will call again. I tried to call her, but my phone service does not allow international calls. I will have to get a special card for that tomorrow when I try to call her.

Throughout my entire childhood and then, my adulthood we had a wonderful man on our local Houston news station. His name was Marvin Zindler. He was quite famous for helping families in the area who needed justice or even medical or financial help. On many occasions he payed to fly children from outside of the US to come here for life-saving surgery. 

Marvin made a huge difference not only in Houston, but throughout the world! 

Marvin’s tagline at the end of almost every news show was, “It’s Hell to be Poor!” 

Marvin was right. It is Hell to be poor! I have been poor before. I know what it is like to pray to God and ask Him to provide food for your children when I knew there was no other way that they would get it. And, I can thankfully say that God always provided for us. 

Unfortunately, Marvin Zindler has since passed away.

My heart is breaking for this mother in Jamacia. I can picture what it took for her to scrape up enough money to call me for 3 minutes. This mom is desperate! Her daughter could very well die. 

Oh… the things we take for granted!

Unfortunately, International Mosaic Down Syndrome Association doesn’t have the funds to help a family like this.

If anyone has any suggestions on how we could help this family, please let me know! 

And, if you pray…… please pray for this mom and her little girl.

In 1981, Dr. Mary Coleman began a series published in Down Syndrome Papers and Abstracts for Professionals (DSPAP) that was the beginning of “The Down Syndrome HealthCare Guidelines”.Over the years, professionals in the Down syndrome world continued to study and learn more about Down syndrome and updated this essential checklist for those with Down syndrome to keep them healthy. The last updated version was in 1999 and can be read here .

Many do not realize that the Health Care Guidelines have been recently updated. These new guidelines are not yet published, and I am not sure when they will be. But with the news of the new guidelines we decided that it would be a very important workshop for our Research & Awareness Conference.

We will have two doctors who were part of these updates explain the details to us during the conference.

Dr. Sally Shott is one of the professionals in this workshop. She is a Pediatric Otolaryngologist at Cincinnati Children’s Hospital. She was also part of the production of Discovery: Pathways to Better Speech for Children with Down Syndrome

This DVD produced by Blueberry Shoes Productions shows that it is essential to lay the foundation for speech development as early as possible for children with Down syndrome. This invaluable resource offers practical advice, examples, and expertise for parents and professionals to follow as they help children with Down syndrome from infancy to age seven become the best talkers they can be.

Dr. Sally Shott is joined with  Dr. Libby Kumin, Professor Sue Buckley of the Down Syndrome Educational Trust, and Dr. Siegfried Pueschel. These and other experts discuss their methods and give practical tips. The DVD also features knowledgeable parents who comment on what techniques and approaches have worked best for their children.

The other professional who was part of this updated Healthcare Guidelines is Dr. Philip Mattheis also of Cincinnati Children’s Hospital. Dr. Mattheis is a Developmental and Behavioral Pediatrician and has co-authored  Medical & Surgical Care for Children With Down Syndrome:  A Guide for Parents as well as a host of other informative papers and books.

Additionally, Dr. Mattheis will be hosting another talk at the conference on behavior in children with Down syndrome.

I look forward to hearing both of these talks and learning all about the new Down syndrome Healthcare Guidelines. I think it is so fantastic that all these professionals have taken the time to come up with specific guidelines that will keep our kids healthy! 

This is why children with Down syndrome are living longer lives! Because people like Dr. Sally Shott and Dr. Phillip Mattheis and all the other great professionals who have dedicated their lives to discovering more about Down syndrome, our children have a better chance of living very long, fulfilling lives!

If you haven’t yet registered for the Down Syndrome Research & Awareness Conference, the deadline for early registration is March 31st. Click here, for all the details!

When we began looking at speakers for our 2009 Research & Awareness Conference we knew that we wanted a very balanced conference with a variety of workshops that would be relevant to Down syndrome no matter what age the parent’s child was. We have  a team of planners for this conference and each one has brought a very special touch to the conference, so that no area is left out.

In looking at our choices in presenters, one that we all got very excited about was Ann Anzalone. She has over  25 years experience in helping families and schools with children with special learning problems from K-12.

She serves as a consultant for adult students, parents and their children regarding learning styles, educational plans and academic performance and she provides foster parent training for Montgomery County Children’s Services.

Prior to being an in-service presenter, Ann taught middle and junior high school students, including those with learning disabilities. Ann has been honored as an Outstanding Elementary Teacher of America and was listed in the Who’s Who in American Education.

Ann is a teacher’s teacher, specializing in communication skills, community building, learning styles, cooperative learning, study skills and stress management. She is an energetic and enthusiastic presenter. Her presentations are very practical and focus on the development of techniques, strategies and tools to optimize learning and communication skills.

She has a wide variety of topics she presents on that focuses on specific learning problems. Then, we began looking at what others said about her. The comments got us excited!

One person said, “Ann Anzalone was outstanding. My experiences as a parent have touched on so many of the things she talks about but I received the information from half a dozen different professionals over the course of years. It stayed somewhat disjointed in my mind. She ties it all together.“

This made us think…. Wow! This sounds like a good presenter for the conference!

Then another person said, “This class was not only enjoyable and entertaining, but I was learning and laughing at the same time.”

This got our attention! We like to laugh! We NEED to laugh! And we love to have presenters who can teach and entertain at the same time!

Then the next person said, “Thank You!   Your presentation was absolutely fascinating. Can’t stop thinking about it.“

I told our conference coordinator, Brandy Hellard that this person sounded like an exciting addition to our conference!

Then another comment we read said..”The session was not only relevant in helping me develop professionally but as a person.”

This was our final clincher! We needed to talk with Ann Anzalone!

We did and got excited immediately! Ann’s topic will be Movement, Reflexes and Learning. Ann says, “In my workshop I will explain how learning is not all in your head. Movement is a key factor in the learning process. Learn how learning affects reading, writing and thinking skills. Discover how breathing affects attention. Identify the key reflexes that begin the brain’s organization for academic work and how they impact the learning process. Understand the learning process in laterelization in learning. Improve memory, concentration and thinking skills through exercises designed to structure the connections in the brain for academic learning.” 

To visit Ann’s site you can click here.

We are excited about Ann and all the Down syndrome experts who are presenting at our Research & Awareness Conference! If you have not yet registered, you can do so today by visiting our website here to find out all the information!

For some books that Ann recommends for helping with brain development please read and click below.

As a parent of a child with special needs, there is always a worry in the forefront of your mind about what you will do for your child’s future. For me, that worry was always something just too complicated to handle. It seemed to be something far too huge and perhaps out of grasp in the realm of my sanity. I like to be in control of things. That is just who I am and knowing that I do not have control over when I die, is a scary realization that I try to come to grips with.

Mary Anne Elhert of Protected Tomorrows attended our 2007 conference with a great deal of advice on future planning as a whole.  She explained that it wasn’t just a will, but planning for your child’s whole life. She takes the scariness out of it all and helps parents understand in easy terms what you need to do to ensure your child is taken care of even before you die. She will be with us again during our upcoming Down Syndrome Research and Awareness Conference in Cincinnati in July.

This workshop is very interactive and will address issues important to you regarding your family member with special needs. Topics of discussion will include Potential Funding Sources, Legal Options, Choosing Future Care People, Family Communication, Wills and Special Needs Trusts.

Mary Anne Elhert is the founder of Protected Tomorrows and had a successful career in the financial industry when she decided to act on her lifelong desire to specialize in serving the families of the disabled. Mary Anne’s younger sister, Marcia, had severe mental handicaps due to cerebral palsy. Although their parents were determined that Marcia should get the best possible care, they had also been confused how to plan for her future.

Like many families of children with special needs, they were scared of doing anything while they were alive that might jeopardize Marcia’s benefits she would need when they had passed away. So, the first family Mary Anne helped was her own. Mary Anne’s sister passed away at the age of 39, but Mary Anne and all the staff at Protected Tomorrows continues to go strong with Marcia in their hearts and minds.

One really awesome thing that Protected Tomorrow offers is their workbook called “My Special Life” This book is basically an instruction book for all that information that YOU know about your child or loved one that no one else knows. Think about it…. does your husband know the names of all the medicines your child takes daily? What about certain food or medication allergies? Does the person you plan to take care of your children in case you die, know what is in your child’s IEP? What about when your child has a melt-down? Does that person you have left in charge know the only thing that will calm your child down is his blue blanket?

This book enables you to get all that information down and not leave anything out! You can purchase the book on the Protected Tomorrows site by clicking here.

I know that none of us really want to think about what might happen to our kids if we suddenly die! It is a scary thing and something that I try to NOT think about! However, not thinking about it doesn’t make it not happen. It just makes us worry more in the back of our minds because we know that we don’ t have anything planned out in case we die suddenly. And, if you think about it, everyone dies “suddenly”. There is never a way of knowing the exact moment that you will die. So, this year, I am going to make a point to understand all I need to know for my kids’ futures. I am going to be sure to sit in on Mary Anne’s workshop and really soak in all the information that I need to ensure my kids are taken care of!

If you have a child with Down syndrome, mosaic Down syndrome, Autism or any special needs, This workshop is for you!

In case I die before July 10-12….. Garrett is allergic to Augmenten and wont eat pasta or any starches due to sensory issues and Tim’s doctor is Skip Jones. (he has all Tim’s daily med information). And  neither can sleep without a night light!

If you have not yet registered for the Cincinnati Down Syndrome Research & Awareness Conference you can find out all the info by clicking here .

Another fantastic expert we have attending our Down Syndrome Research & Awareness Conference is Dr. James MacDonald of Communicating Partners.

Twenty years ago when Tim was first diagnosed with mosaic Down syndrome his main delay was speech-thus the reason we received his diagnosis. At 2 1/2 years old, he had 25 single words that only I could understand and was not putting any words together to make sentences.

I was very frustrated about his delays and wanted to help him anyway that I could. My Early Intervention program did a workshop that lasted about 6 weeks that enabled me to learn everything that I could to help Tim communicate. This program was put on by the Hanen Centre and much later I discovered that it was Dr. Jim’s program that the Hanen Centre had adopted and formed to teach me how to teach Tim.

In just nine months, Tim went from those 25 unintelligible words to an unlimited vocabulary that most of our family and friends could understand. And, not only was he putting words together, he was putting 3 and 4 words together to make good sentences!

I have always been a big advocate of Communicating Partners and over the years have grown to know and respect Dr. MacDonald. He truly cares about children and getting them to communicate and his program is not hard for anyone to do! It isn’t “speech therapy” it is more just a new way to play and interact with your child.

Dr. Macdonald is the author of several books (see below this post for his books) and has a very informative website (you can click here for his site). He also has a great online egroup where families from all over can share experiences and ask questions directly to Dr. Macdonald. You can join the egroup by clicking here.

Dr. MacDonald will be holding two separate workshops during our conference.One will be for non-verbal or pre-verbal children. The other workshop is for children/teens/adults who are already talking, but still have delays or trouble expressing themselves. These two hour workshops will give you the basis of all you need to know on helping your child communicate no matter what level they are at.

If you have not yet registered for the Cincinnati Conference, please be sure to do so before the early registration deadline of March 31st! If you need financial assistance to attend this conference, we can help you locate organizations in your area that will help with that! Just visit our website for all the details by clicking here.

We have just four more weeks until World Down Syndrome Day! On World Down Syndrome Day we will be celebrating with our 4th annual Genes Day. We currently have 15 teams raising money and awareness for Down syndrome and mosaic Down syndrome. 

The teams are all doing great and together they have raised $451.00 so far! Zoe’s team is still in the lead and all of her team members are rallying around her and spreading awareness everywhere they go!

Way to go Team Zoe!

If you have not yet made a team, it is not too late! Just go to our site and start making your page! It is very easy and a lot of fun! Click here to learn more about Genes Day.

It is so great that everyone is having such a good time with this event. Families and friends are coming together and really discussing what it really means to have extra chromosomes. They are understanding that having Down syndrome and mosaic Down syndrome is not as different as they once thought. They are understanding that with a little extra help, these kids can grow up to be fantastic adults who are just like everyone else!

Speaking of adults growing up to be fantastic people…..

Earlier in the week, I told you that Dr. Sindoor Desai will be coming to present a workshop at our Down Syndrome Research & Awareness Conference. 

Many wanted to know if her son, Sujeet was planning to attend as well. Sujeet was able to arrange his schedule and will be attending the conference with his parents. We are very happy and excited that he will be able to attend and we are working a possible performance for him. If we are able to work it out, I will give you an update and let you know. But as for now, he and his mom will be presenting a workshop on Saturday morning and he will be playing some during the workshop. If you have never heard Sujeet play, you are in for a treat! The Desai story is truly inspirational and Sujeet is an amazing musician.

You can learn more about Sujeet by visiting his website. www.sujeet.com

Dr. George T. Capone is a leading researcher at Kennedy Krieger Institute to better understand those with Down syndrome and Neurobehavioral disorders such as Autism.

Children with Down syndrome have a higher risk to have Autism than the general population. Considering that right now in America, Autism is quite high, because the population of those with Down syndrome is much smaller than the general population, the odds of having Autism increases. 

My son with mosaic Down syndrome also has Asperger syndrome, which is on the Autism spectrum. So, I know first hand what this world of duel-diagnosis is. 

Dr. Capone and his team of researchers are exploring the link between children with both Down syndrome and autistic spectrum disorder ages 3 to 4.5 years. Another, drawing from a population of individuals ages 15 to 35 years of age, seeks to better understand the relationship between Down syndrome and neuropsychiatric disorders (i.e., depression, obsessive-compulsive tendencies, movement disorder and cognitive decline). Another study involves males ages 5 to 10 years of age, for genetic difference in children with mental retardation. Dr. Capone is also studying children with Down syndrome and Congenital Heart Disease (CHD). 

Dr. Capone will explain more about his research on Down syndrome and all the Neurobehavioral disorders associated with it and help parents and professionals better understand what to do to help their child with these disorders. 

You can click here to read all of Dr. Capone’s research studies.We are still working out the details of the research at the conference, but I am pretty sure that Dr. Capone will be conducting research at the conference. So, be sure to indicate if you are interested in participating in research on your registration form, so we can set you up appointments prior to the event.

I have never had the opportunity to meet Dr. Capone, so I really look forward to hearing him speak at the conference. The more that I go through each of these speakers the more I am thinking that we really are going to have to have these workshops recorded! I want to be able to hear each of them and I know that you do too! So, we will have to look into those options and talk with a few friends who might can help out in that area. 

In this past week, we have had several more families sign up to attend our conference in July in Cincinnati. If you haven’t signed up yet and you are still waiting to hear if a certain person is coming or if you still are not sure, please ask me the questions that are on your mind! I will answer anything you want to know! Remember that you can go to our site by clicking here for more information on the conference and to register and reserve your hotel!

Many of you know Nina Fuller , but for those of you who have not had the opportunity to meet her, you are in for a real treat! In 2007, Nina and her family came to our conference in 2007 and everyone absolutely loved her presentation! During the conference, we give the participants surveys to fill out at the end of the workshop, so we will know how well the presenter did and if this is a presenter we would like to have back. As I was going through the conference surveys, Nina Fuller’s stood out more than anyone’s! All the participants gave her high ratings on all accounts and each had the same complaint-they wanted to listen to her forever! The workshop wasn’t long enough!

Well, unfortunately, when a presenter is really good, the workshop can be all day long and it wouldn’t be long enough! But thankfully, we do have Nina and her wonderful family coming to Cincinnati to present once again!

Nina and her husband Andy are the kind of folks that you just really wish were your next door neighbor! They have 5 children, their two youngest daughters have Down syndrome. And, they are absolutely adorable!

Nina is the founder of Living Proof Testimonies and S.M.I.L.E. on Down syndrome. She is also the co-founder of I Can Read Too!  Which is a great reading program for children with Down syndrome.

Nina is the author of Special Strength for Special Parents . Special Strength for Special Parents is a 31 day devotional of spiritual therapy for parents who must live in two worlds: the one with the rest of the world who doesn’t understand. The second world is their universe: the all-consuming world of caring for a child who has special needs unique to the majority of those in the first world. The physical, emotional, social and spiritual needs of these parents are extremely complicated and “Special Strength for Special Parents” provides spiritual therapy to those who need healing of their own.

The workshop Nina will be presenting is: F.O. G. – PRINCIPLES FOR LIFE AS A FAMILY WITH SPECIAL NEEDS – Spiritual and emotional encouragement for families who have a loved one with special needs -Galatians 6:2

I realize that not all of the families attending our conference are Christian or spiritual in any way. And that is OK! We have four ongoing workshops at all times, so even if Nina’s workshop isn’t what you are interested in, we will have many more that are!

To find out more about the conference, please visit our website by clicking here.

If you are interested in reading Nina’s book, you can click below to go to Amazon to make an easy purchase!