31 For 21: Day 26...Another Small Step?

My proud boy!

For months, Andrew has been interested in the potty.  He loves to flush the potty and when he does, he looks into the bowl, waves and says, "bye!"  It's really cute, until he continues to flush...and flush and flush.  He also has his own "little" potty.  He likes to sit on it, but so far, that's about all he's done on it.  I also haven't been pushing him or formally training him to use the potty.  This is mostly because I haven't had enough time to spend with him to dedicate to this task.  I'm not good at following schedules or routine, something that Andrew desperately needs.  I was going to wait until Christmas break to really start the potty training.  I thought that by having almost 2 weeks without any school or other interruptions, we could make some progress.  My brother and sister will be here for 2 weeks with their families, so I already know that I have to have everything ready for the holidays before they arrive the weekend before Christmas.  That was the plan...

For the past week or so, Andrew has been saying, "Potty, potty" constantly, mostly when I think that he's trying to stall.  Mostly right before bed, he will start with this rather new word.  I have been trying to be consistent and I do put him on the potty where he will just sit there and demand that I read him a book.  No pee-pee in the potty though.  So for the past 2 nights, I have ignored his request for the potty because I've been tired and just wanted to get him to bed.  Today, he started his potty request sometime after dinner.  Since I was planning to give the kids a bath, I took them into the bathroom and got him ready for the bath.  I noticed that Andrew's diaper was dry even though I changed it right before dinner and it should have been wet.  He sat down on the potty and after a minute or so, he started peeing in the potty!  He seemed very concerned and almost upset and uncertain about it.  I kept encouraging and praising him for peeing in the potty and quickly got the jar of change from the cabinet--the reward that we keep promising the kids if they peed in the potty.  I held out the jar to him and he took a big handful of change out of it.  He stood up and I turned him around so he could look in the potty and see what was there.  I kept up the praise as I followed him into his room so he could put his handful of change into his bank.  He carefully put each coin into the bank and his face lit up when he shook it to see how much was in there.

While, I'm not all that confident that something connected in Andrew tonight when he finally used the potty, but I did learn two things---I need to start to follow a routine for the potty for Andrew and I need to actually take Andrew to the potty when he asks.  I can't wait to send Andrew to school tomorrow with the note in his backpack telling of Andrew's success tonight.  I also want to ask if Andrew asks to use the potty at school or if it's just at home.

I'm interested to hear from my friends here...How old were your kids with Ds potty trained?  How old were your typical kids potty trained?  And please let me know if they are a girl or boy.  I am also struggling with Hailey and the potty, but she still is young.  She just turned 2 in August and while she was interested in the potty for a short time, she seems to be fighting even sitting on the potty anymore...that is, except when Andrew wants to sit on the potty.  When that happens, she would do anything to get to the potty before he does!  So, I'm just wondering when typical girls were trained!  Thanks for any interesting stories or tips. 

31 For 21: Day 20...Raising Children is Like...

In my opinion, raising children is like learning a foreign language.  There are similarities in the roots of many foreign languages, but that's where it ends.  The same applies to children.  There are "guidelines" for the reaching of milestones, but that's all they are...guidelines.  Much like the "exceptions" to the grammar rules, there are "exceptions" to all parts of child rearing.  I could cite many examples of how Andrew writes most of the "exceptions" in our lives, but there are a few that really stand out.  I know that Andrew is subject to developmental delays, but Andrew was my first child and I didn't really know what I was supposed to "expect" in terms of his development.

As soon as Andrew was born, I began receiving emails from BabyCenter.com every week.  These emails described what Andrew would typically be learning how to do that week.  I thoroughly read through these emails every week, delighting in the fact that Andrew was progressing and developing like a typical baby.  This kept up until Andrew was about 6 or 7 months old, when the gross motor tasks, such as crawling and pulling to stand, began to appear frequently.  Andrew wasn't crawling or pulling to stand; he was happy sitting in one place playing with his toys.  If he couldn't reach his "favorite" toy, he would select another one.  I grabbed the book that I had on gross motor skills for children with Ds, a book that I had yet to pick up since Andrew was developing typically up to that point.  I read with interest about the 2 types of children and learned that Andrew is an observer.  He prefers to look and watch and learn from everyone around him.  He doesn't seek out movement, but hopes that it happens without disrupting him too much.  Because of this, teaching Andrew to walk was a nightmare.  He cried through his therapy sessions for months until he finally learned to walk at 26 months.

Another exception to the rule was Andrew's first tooth.  Typically babies cut their first tooth between 4 and 7 months.  As Andrew approached his 11th month, I was still anxiously awaiting Andrew's first tooth.  Finally on a cool Thursday morning in November, Andrew and I were sitting with my friend Chris at a farmers' market.  Business was slow that morning, so we were chatting and catching up since we hadn't see each other in awhile.  Andrew was playing with us and he looked up at Chris with his toothless smile.  She saw something in his mouth and looked closer.  She said, "You didn't tell me that he cut his first tooth."  I looked at her kind of dumbfounded and told her that he didn't have any teeth yet.  She laughed at me and told me to feel his gums on the left side of his mouth.  Sure enough, I felt the sharp top of his first tooth!  I couldn't believe that I didn't even know he had cut the tooth.  Isn't a mom supposed to know everything about their child?  I had not even attributed his sudden crankiness and slight fever as signs that his first tooth was getting ready to make its entrance.

Fast forward one and a half years...Hailey was 9 months old and had 3 teeth in her mouth, the first appearing by 6 months.  She was also crawling, pulling to stand and cruising.  I knew that the "rule book" would not apply to Andrew, but I didn't even know what the rules were supposed to be.  Indeed, every child is different and every child develops differently.  The milestones are written as a range of ages.  They are guidelines that "most" children will follow.  So far, Hailey has met her milestones during the "typical" age ranges, but I ended up discontinuing my emails from BabyCenter.  Who needs guidelines, anyways?  

31 For 21: Day 19...Questions & Answers

FAQ's


What is Down syndrome?
Down syndrome is the most common genetic condition. One in every 733 babies is born with Down syndrome. The most common form of Down syndrome is called Trisomy 21, because it involves an extra copy of the 21st chromosome.

What impact does Down syndrome have on society?
Individuals with Down syndrome are becoming increasingly integrated into society and community organizations, such as school, health care systems, work forces, and social and recreational activities. Individuals with Down syndrome possess varying degrees of intellectual disabilities, from very mild to severe. Most people with Down syndrome have IQs in the mild to moderate range of intellectual disability.

Due to advances in medical technology, individuals with Down syndrome are living longer than ever before. In 1910, children with Down syndrome were expected to survive to age nine. With the discovery of antibiotics, the average survival age increased to 19 or 20. Now, with recent advancements in clinical treatment, most particularly corrective heart surgeries, as many as 80% of adults with Down syndrome reach age 60, and many live even longer.

In the United States, approximately 400,000 families have a child with Down syndrome, and about 5,000 babies with Down syndrome are born each year. More and more Americans will interact with individuals with this genetic condition, increasing the need for widespread public education and acceptance.

What is the cause of Down syndrome?
The additional copy of the 21st chromosome which causes Down syndrome can originate from either the father or the mother. Approximately 5% of the cases have been traced to the father.

Who has the highest risk of having a child with Down syndrome?
Down syndrome can occur in people of all races and economic levels. Older women have an increased chance of having a child with Down syndrome. A 35-year-old woman has about a one in 350 chance of conceiving a child with Down syndrome, and this chance increases gradually to one in 100 by age 40. At age 45 the incidence becomes approximately one in 30.

Since many couples are postponing parenting until later in life, the incidence of Down syndrome conceptions is expected to increase. Therefore, genetic counseling for parents is becoming increasingly important. Still, many physicians are not fully informed about advising their patients about the incidences of Down syndrome, advancements in diagnosis, and the protocols for care and treatment of babies born with Down syndrome.

Why are medical researchers today so keenly interested in Down syndrome?
Down syndrome is a developmental condition. As researchers learn more about the molecular genetics and other aspects of Down syndrome, they also obtain valuable information about human development and can advance the study of many biological processes.

In addition, individuals with Down syndrome have a higher incidence of certain medical conditions, and the study of Down syndrome may yield important breakthroughs in those areas. Research in Down syndrome provides a way for looking at many important problems:

• Heart disease: Up to 50% of individuals with Down syndrome are born with congenital heart conditions. The majority of heart conditions in children with Down syndrome can now be surgically corrected with resulting long-term health improvements. However, scientists continue to search for the cause of these heart conditions and look for means of prevention.
• Alzheimer's disease: Estimates vary, but it is reasonable to conclude that 25% or more of individuals with Down syndrome over the age of 35 will develop the clinical signs and symptoms of Alzheimer's-type dementia.
• Leukemia: Approximately one in every 100 individuals with Down syndrome will develop leukemia; or, to put it another way, 99% of people with Down syndrome will not develop leukemia. The majority of cases are categorized as acute megakaryoblastic leukemia, which tends to occur in the first three years of life, and for which there is a high cure rate. A transient form of leukemia is also seen in newborns with Down syndrome, disappearing spontaneously during the first two to three months of life.

Re-printed from www.ndss.org



31 For 21: Day 8...Welcome to Holland

Fridays are long days for me right now.  My mother and I are busy preparing for our weekend farmers' markets.  So instead of a long post today, I am sharing a poem written by Emily Perl Kingsley.  For those of you who don't recognize her name, Emily Perl Kingsley is a writer for Sesame Street.  She also has a son who has Down syndrome.  His name is Jason Kingsley and she wrote this poem after learning that Jason has Down syndrome.  Tomorrow I will reflect on this poem and my thoughts about it and about the first moment in the hospital after Andrew was born when the doctors suspected that he had Down syndrome.  Until then...Welcome to Holland!

Welcome To Holland

by

Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

In Honor of Andrew on World Down Syndrome Day

My life would be very different if Andrew wasn't born with Down Syndrome. That day, December 12, 2006, changed my life forever. I have made connections with people whom I never would have met if it wasn't for the extra chromosome that Andrew was blessed to have. Three copies of his 21st chromosome...funny how something as small as that could change your life. My goals, now that he and his sister are a bit older and more independent, are to increase awareness and garner more acceptance for people with Down syndrome. It is not an illness and it is not contagious. People with Down syndrome deserve the same acceptance and respect that everyone else deserves. Leave me a comment if your life has been touched with someone with Down syndrome.

So, here is my 21 for 21...21 things about Andrew that makes him who he is...

1. Andrew has Down syndrome, which was diagnosed after he was born. It occurs in approximately one in every 800 live births.

2. If he knows you well, Andrew will always have a big smile and a hug for you.

3. If he doesn't know you well, Andrew will put his head down when we sees you, but will peek out to look at you to get to know you better.

4. Andrew loves to play outside. Whether it's running up and down the driveway or kicking a ball, he'd rather be out in the fresh air than inside.

5. Andrew's favorite breakfast is french toast made with cinnamon bread.

6. Andrew's favorite television shows are iCarly and Spongebob Squarepants. He could watch them all night if I let him.

7. Andrew loves going to school. He currently attends the special education preschool at Burr Hill Elementary School in Higganum, Connecticut, which is part of Regional School District #17.

8. Andrew's favorite activity on the playground is climbing up the slide and then sliding down.

9. Andrew can run, jump and play, just like other kid's his age. It has just taken him longer to learn how to do some of these things.

10. Andrew loves for me to read "How Does a Dinosaur Say Good-Night?" to him every night before bed.

11. Andrew loves playing with the water in the bathtub during his bath, but he hates when I pour water over his head when I wash his hair.

12. Andrew loves his John Deere tractor. He rides it in a circle in the driveway.

13. Delayed speech is a common issue in children with Down syndrome, due to low oral muscle tone. Andrew has learned some words that we can understand including mama, dada, help, pineapple, hi, bye, yeah, i do. He learns more words everyday, including some of the colors. Most of the time, only his family can understand what he is saying, but with more practice and development of his oral muscles, everyone should be able to understand him.

14. Andrew has also learned some sign language to help him communicate with others. He knows the signs for many common words that he needs to use in school, including more, play, thank you, yes and no.

15. Andrew usually gets along well with his younger sister, Hailey. They do play nicely with each other most of the time, but they do push each other occasionally. Sibling rivalry is still the same as with any siblings.

16. Andrew hates getting hair cut, the same as many other 3 year olds.

17. Andrew has taught all of us to enjoy the simple things in life...the fascination of a ladybug crawling across the table, the delight in watching water flow down the driveway. It's the memories that we are making together, the moments that we enjoy each other that are more important than getting the chores done.

18. During Andrew's first three years when he was in the Birth to Three early intervention program, he tried so hard to learn the basic skills that typical children seem to learn so easily. Crawling, walking, and climbing stairs were always so hard for him and the tears that we cried during therapy sessions were heart-wrenching. But, when it was over, he would look up at us and smile, and we would smother him with kisses--his reward for trying so hard. We still do the same today when he works and learning a new skill that is difficult for him.

19. Andrew loves his "Rizzie"...my mother.. He likes to work with her in the kitchen and she has been teaching him how to roll out dough to make pot pies and cardamon bread. And, he loves playing in her big bin of flour!

20. Andrew also loves his "Grammy"...my mother-in-law. She buys him most of his clothes and books. He loves for her to read to him and she enjoys all of his creations in his play kitchen, including his specialty...coffee!

21. Andrew is more alike his typical peers than different!

Some of Andrew's pictures appear in this video that my FaceBook friend, Lisa Smith, put together to celebrate the specialness of our children:
http://www.onetruemedia.com/shared?p=a8d2c4b8b1b4fc329a0ecc&skin_id=0

Also, for my first Wordless Wednesday post on Wednesday, March 24th, I will post pictures of Andrew doing "typical" preschool activities! Looking forward to talking with all of you soon!

Spread the Word to End the Word

For months now I've been meaning to get back to my blogging, but with Andrew starting school and then the holidays, I never seemed to take the time to do it. Finally, today seemed like the perfect day to get back to it.

I struggled all day with what I would write for this special day...an important day...the beginning of a new outlook on those with disabilities. It's a cause that is important to my family and especially for Andrew. He didn't choose to be born with Down syndrome, and we didn't choose to have a child with Down syndrome, or any disability for that matter. But we were blessed with Andrew, a blessing that I am reminded of every time I look at him and see his face light up in a smile. My happy, happy boy who loves unconditionally and only wants to receive the same love in return.

I never really found the words, but they were found for me. Out of the blue I received an email from my sister with an attachment. I cried as I read the letter that she wrote, for I was again reminded of the love and support that Andrew gets from my family...the same unconditional love that he offers to everyone he sees everyday. Below is the text of the email and the letter that was attached. Thank you, Kate, for sharing this with us. Andrew loves you very much!




"Kim, My bosses at H&R Block let me put up a notice in the offices about the Spread the Word campaign. Attached is the little write up I did. Thought you might want to see. Kate"

Spread The Word to End The Word

On December 12, 2006, my sister gave birth to my one and only nephew, Andrew (or Spike, as I like to call him). Right away the doctors knew that there was something different, I say special, about Andrew. He has Down Syndrome. Andrew has had a tougher childhood than most kids. All the different milestones of learning to crawl, walk and talk have taken longer for Andrew and his speech is still behind others his age. However, with the love of my sister and our family, he has flourished into such a wonderful, exuberant and happy kid. This past December he was accepted into special education preschool where he is getting to interact with other kids his age in an environment that is the same as regular preschool. There are so many people who have been standing by Andrew and encouraging him every step of the way.

I am hoping that I can count on you to stand by him and others as well. Today (March 3, 2010) is this year’s start date for Special Olympics and their Spread The Word to End The Word campaign. The use of the “R” word has become too commonplace and needs to be gone from people’s vocabularies. I am asking you to please take 5 minutes out of your day and log on to http://www.r-word.org/ and take the pledge to rid your vocabulary of the R word. I am also asking you to please pass this on to as many people as you can.

Andrew may be growing up differently than other 3 year olds but he deserves to do it in a world without hate, bigotry and discrimination. My family and I appreciate any support that you feel you can give towards this movement.

Thank you.

Sincerely,

Kate Lewandowski
H&R Block-Sears Office

In addition to this letter that she posted at work, she also sent an email to all of her contacts asking for their support and urging them to sign the pledge. I always knew that I have a special family, but her actions confirm and remind me that I will always have their unwavering support and dedication to Andrew in his complicated and extraordinary journey through life. A life that is always celebrated in our family, and hopefully in the future, celebrated and respected everywhere.

Celebrate the day, and hug your kids a little tighter and enjoy the love that they give you!

Kim :)

Andrew's Birth Story

It was Tuesday, December 12, 2006 at 8:05am. My first baby, Andrew was just born via C-section. I was waiting and waiting for his first cry, the cry that would let me know that he was indeed here and he was all right. Finally, it came--a tiny little cry that brought tears to my eyes. I looked over at Chris and we smiled together. Our son was finally here.

While we were waiting for the pediatrician who were working on Andrew to bring bring him over to us so we could get our first look at our son, we chatted with the anesthesiologist who was at my head. Finally a doctor came over to us, without Andrew. She looked at me and said, "It appears that your son has a genetic anomaly. We will need to do further testing." And with that she walked away. Chris and I looked at each other and then he looked at the anesthesiologist. He asked her what that meant. She said that she didn't know.

Finally, Andrew was brought over to us. Chris took him in his arms and showed him to me. He was beautiful and he looked just like his daddy. I looked into his eyes and then I realized what it was, the genetic anomaly that the doctor was talking about. Andrew has Down Syndrome. My first-born child has Down Syndrome. I looked at Chris and told him. I will never forget what he said to me. "Andrew was given to us for a reason. We were chosen to have him and we are being trusted to take care of him." And he was right! We very very lucky to have Andrew come into our life and we were going to help him become the best person that he can be. And we are going to learn from him, much more than he will learn from us.