31 For 21: Day 31...21 Things About Andrew

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 are 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 with syrup followed by pineapple and milk.

6. Andrew's favorite television show is Spongebob Squarepants. He could watch it all day if I let him.

7. Andrew loves going to school. He currently attends the special education preschool three times a week at Burr Hill Elementary School in Higganum, Connecticut, which is part of Regional School District #17.  He also attends a private preschool  two times a week with all typical peers at the Killingworth Nursery School in Killingworth, CT.
8. Andrew likes to be tickled.  He'll run away when you tickle him, but then he'll run back to you to get him again.

9. Andrew likes to observe what's going on around him.  He models what he sees when he is confident that he can do it.

10. Andrew loves for me to read to him every night before bed.  Then we snuggle in his bed until he falls asleep.  Usually, I fall asleep with him.

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

12. Andrew is very cautious when it comes to movement.  While other children will run around and jump over obstacles in the playground, Andrew will take his time and figure out what to do first.

13. Delayed speech is a common issue in children with Down syndrome, due to low oral muscle tone. Since Andrew started preschool, his words have multiplied.  He learns more words everyday from conversation in class. 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 a ton of sign language to help him communicate with others. He is constantly watching the Signing Times DVD and can sign along with all of them.  Most of the time, he shows us the sign when the word comes on the screen, before Rachel demonstrates it.

15. Andrew usually gets along well with his younger sister, Hailey. They love to wrestle on the floor, laughing hysterically the whole time, until someone hurts the other's feelings.  Sibling rivalry still exists!

16.  Andrew LOVES to paint.  At his private preschool, he paints every time he is there because the easel is always setup with fresh paint, paper and brushes.  I usually take home at least TWO masterpieces each time.

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. Andrew has made so many friends already.  Adults love him too!  It is so heartwarming to hear stories that others tell about him.  His teachers always have a funny story to tell.  His private school teacher always tells me how great the other kids are with him and that they are genuinely interested in him.

19. Andrew loves his new friend, Bonnie!  She works with us in our kitchen.  Whenever I ask him "Who's coming to work today?" he always says, "Bonnie!"  It used to sound like "Bunny" and it took us awhile to figure out what he meant.

20. Andrew has been missing his "Pop-Pop" who has been in the hospital.  He is very in tune to changes in his routine and he is definitely noticing that his grandfather is not here to help me get him off to school in the mornings. 

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

31 For 21: Day 24...Baby Memories

This is another great poem about Down syndrome.  I really wish I knew who wrote it.

The Creed Of Babies With Down Syndrome
By unknown

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I’m no different
His love knows no bounds
It’s those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I’ve chosen
Will help me get started
For I’m one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I’ll do it as you do
But at my own pace.



Some of Andrew's baby photos: A Short Walk Down Memory Lane



Less than an hour old in the NICU.

 

One day old in the NICU.



Discharge day! 12/17/10





Andrew's birth announcement photo.



He didn't cry much, but when he did...



With me and Grandma Rizzie in his way too big Santa suit.

Handknit hat and mittens from Aunt Grethe.



First night in his room.  A very big crib for a very little boy!



Peaceful sleeping baby



Chris would usually come home from work to this...



31 For 21: Day 30...Halloween Parties...in Pictures

Since Hailey goes to her Tots class and Andrew goes to 2 preschools, we have had lots of fun this week celebrating Halloween!   Each of the 3 classes had a party this week.  Hailey's class had fun reading a Halloween story and making trick-or-treat bags to collect the treats that they exchanged in class.  Andrew's private preschool had a costume parade through the hallway and into the parking lot followed by Halloween themed snacks.  Andrew's public school class paraded through the elementary school, had their picture taken in the library and then did some fun crafts and sang their "5 Little Pumpkins" song.  I attended every party, of course, and managed to get some cute photos before Hailey decided to stop cooperating and Andrew started crying and fussing.  Enjoy the photos of SpongeBob Squarepants and Strawberry Shortcake!  Happy Halloween!




Hailey's class.  She's the one sucking her thumb!

 

Little Miss Strawberry Shortcake decorating her trick-or-treat bag.



Waiting patiently for her teacher, Mrs. D. to attach the handle to her bag.

 

Collecting her treats!

 

Strawberry Shortcake!



Andrew with his teacher, Mrs. Fries at Killingworth Nursery School.



Enjoying his juice.  The only thing he has during snack time!



Andrew with one of his paras, Mrs. Weise at Burr Elementary School.

 

Andrew's class singing "5 Little Pumpkins."

 

SpongeBob Squarepants!

 

Andrew's pumpkin



Hailey loved playing with the kitchen stuff in Andrew's classroom.





It was a very busy morning at school!



31 For 21: Day 21...Inspiration

Yes, I know that it is really not Day 21.  There were 2 nights this month that I feel asleep before posting, so in order to fulfill my commitment to post 31 times this month, this weekend will be "Double Post Weekend!"

So, for today's first post, I have re-printed one of my favorite "poems" about Down syndrome.  I read it not long after Andrew was born and I remember being comforted by the message and knowing that while life with Andrew may have its ups and downs and its surprises, everything would always turn out just the way that God planned it for me.  I had chosen to have Andrew and I never take that for granted.

God Chooses A Mom For A Disabled Child

By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

“Armstrong, Beth; son; patron saint, Matthew.
“Forrest, Marjorie; daughter; patron saint, Cecelia.
“Rudledge, Carrie; twins; patron saint…. give her Gerard. He’s used to profanity.”
Finally, he passes a name to an angel and smiles, “Give her a handicapped child.”
The angel is curious. “Why this one, God? She’s so happy.”

“Exactly,” smiles God. “Could I give a handicapped child 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 too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today. She has that feeling of self and Independence. She’ll have to teach the child to 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, there is a woman I will bless with a child less then perfect. She doesn’t realize it yet, but she is to be envied. She 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! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

“I will permit her to see clearly the things I see — ignorance, cruelty, prejudice — and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

“And what about her patron saint?” asks the angel, his pen poised in midair.
God smiles. “A mirror will suffice.”

31 For 21: Day 29...Count Me In

This is a great song, written for Sesame Street by long-time writer, Emily Perl Kingsley.  Emily's son, Jason was born with Down syndrome and he was the first child with Ds to appear on Sesame Street.  Jason, now in his 30s, co-wrote a book, Count Us In, with his long-time friend Mitchell Levitz.  I have gotten the opportunity to meet both Jason and Mitchell on two occasions.  First, at the NDSC Convention in Boston in 2008 and then again at the CDSC Convention in Cromwell, CT in 2009.  Each time, I was impressed with their story-telling abilities and the clarity in which they speak.  They make me excited for Andrew's future.  Just listening to them tell about what they are doing in their lives...their jobs, their living situations, makes me feel blessed to have Andrew.  The opportunities that are available for Andrew now are sky-high, mostly due to the many, many families that have come before us to advocate for their children, and in turn, advocate for Andrew.

"Count Me In" is a wonderful song about acceptance.  That is all I really want for Andrew.  I was people to not judge him because of his diagnosis, but to judge him for who he is as person first.  That's why I try to remind others to use "People First" language.  As in, "a child with Down syndrome" and not a "Down's child."  It's become an automatic correction on my part whenever I hear someone speaking incorrectly and not using people first language.  I will also not hesitate to severe ties with a contact, be it personal or professional because they continue to either use the "R" word or any other unacceptable language that discriminates against my son.  It is rude and disrespectful, especially when I have repeatedly asked someone to respectfully change their language.  If I don't advocate for Andrew, no one else is going to.  I owe it to him and to his peers with any disability to promote the use of appropriate language when referring to them.  Baby steps, baby steps...and a small step for man, a giant leap for mankind.  I can only hope to make the baby steps in an effort to change the world.  But I will reach for the stars and hope to touch them...

31 for 21: Day 28...The Surprises Continue

As a Facebook addict, I constantly read my friends' updates.  I am particularly interested in experiences with doctors.  Andrew is relatively healthy with no major medical problems.  He is also rarely sick besides allergies.  I eagerly read about traumatic visits to doctors and specialists so I know that I am not alone in my experiences.  Because of Andrew's good health, his lack of visits to doctors' offices leads to major issues when we do have to go.  ENT visits are especially traumatizing.  I'm not sure if it's worse for me or for Andrew.  My heart breaks every time I see him freaking out at our doctor visits.  I also spend a lot of time chasing him around the office because he manages to escape from the exam rooms.  Because of this, I was already preparing to be traumatized today when I took Andrew for his semi-annual dentist visit.

Visualize the dentist's office...a large size waiting room full of baskets of toys to be knocked over, a bathroom with a door that Andrew can open so he can "practice" flushing the toilet, and an exam station which has 3 areas all open with no doors to keep kids in.  I've been there with him before, and I brought Hailey in a stroller and my mother to help me maintain control.  The last visit was easier than the first two visits.  Andrew would at least sit in my lap and let the hygienist look into his mouth and she actually got to clean his teeth.  It was going okay...well, that is until the dentist came in to take a look at Andrew's mouth.  Andrew seems to really have a problem with male authority figures, or at least those who are trying to get Andrew to behave or perform in a certain way.  Doctors, teachers, photographers...if they are men, forget it.  Andrew just starts crying when they ask him to do something.  The dentist was no exception even though the visit had been successful until that point.  Andrew refused to cooperate and clung to me until we left the office.

For the third day in a row, Andrew has managed to surprise me.  He climbed into the dentist's chair and looked around like he was the King of the dentist's office.  He even let the hygienist raise and lower the chair.  He didn't start climbing out until she tried to lower the headrest.  He decided then that he wanted to sit with me, so I sat in the chair with him on my lap and we both went for a ride on the dentist's chair.  He noticed that SpongeBob Squarepants sticker on her name tag and pointed it out to her.  That led to our conversation about Andrew's SpongeBob Halloween costume and the Halloween party at school that morning.  He was really excited trying to get out the words to talk to her.  When he was done with that conversation, I leaned him back against me and he started to relax.  The hygienist was able to scrape his teeth, clean them and floss as well.  He practically fell asleep while she was working.  Now, I don't mind the dentist at all, but I really don't think that I would ever be able to fall asleep while the hygienist was working in my mouth. 

After she was done, Andrew started to hop out of the chair, but she was able to distract him by having him show her how he brushes his teeth at home.  And then...in walks the dentist.  Andrew looked at him, trying to figure out what he wanted with him.  As he looked him over, Andrew noticed the "Nemo" embroidered on his jacket.  He called out, "Meno, Meno" which is how he pronounces it.  Instantly, Andrew figured out that this dentist must be a cool guy if he had Nemo on his jacket.  Andrew then settled back against me in the chair and opened his mouth for the dentist.  He waited patiently while the dentist looked at all of his teeth, gave notes to the hygienist about his teeth, and had the fluoride brushed on his teeth.  The other hygienists in the room almost had no idea that there was a patient in the office, Andrew was that quiet.  They all came by remarking on that cute and composed boy in the corner area.

Andrew surprised me once again, and I was able to almost enjoy the dentist visit and ask all of my questions while we were there, instead of having to call the doctor later that day to get my questions answered after rushing Andrew out the door so he would stop crying.  I didn't even have to bribe him with the coins that I put in my pocket or district him with his flash card app on my phone. My little boy is growing up and realizing that not every doctor visit needs to be a traumatic experience.  I was so proud of him today and I made sure to tell everyone what a good boy he was at the dentist.  He proudly showed off his clean teeth to both of his grandmothers, his sister, the woman that worked for us today, and his daddy.  We also took a picture of his smile for daddy to take to his Pop-Pop in the hospital so he could see them too!

31 For 21: Day 27...Wordless Wednesday

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 25...A Small Step (or a Small Jump)

Months and months have passed by as I've watched Hailey jump in the air or jump off the last step of the stairs.  Andrew has been trying and trying to jump.  He bends down with his thighs parallel to the floor and tries to jump.  He manages to get one foot off the floor consistently.  And we clap for him...so thrilled that he is trying so hard.  That's what he does.  He tries and tries and doesn't stop trying until he finally reaches his goals.  I work alongside of him, encouraging him with every step he takes or every falter in his path.  I never seem to need to urge him to try again; he does that on his own. 

Today I was able to cheer him on as he took another small step towards one of his goals...jumping with two feet off the ground at once.  We were at my mother's this afternoon and I was holding Andrew's hand as he stood facing me.  I was talking with my mother, not really paying attention to Andrew.  He began practicing his jumping.  For weeks, Andrew had been squatting down and jumping up, only lifting one foot off the floor each time.  But today, he actually jumped off the ground with both feet!  He did it over and over again until he was tired out.  We were so excited for his accomplishment!  He got lots of kisses and hugs from me and I couldn't wait to get home to show Daddy his new trick.

At home, however, we learned of other news.  My father-in-law was brought to the VA Hospital this afternoon.  He had not been feeling well, and being in his 70s, my mother-in-law thought it best to take him in.  He hasn't eaten in days and only drank some fluids.  Being diabetic, we knew that this was dangerous for him.  We learned that he could either have a blockage or a kink in his intestines, both of which could require surgery.  They are keeping him overnight tonight to keep an eye on him.  In the morning, depending on the results of his CAT scans, the doctors will decided if he needs surgery.  I am hoping that surgery won't be necessary and that the blockage can be cleared without it.  I have been saying some prayers for him and ask for more as you can.

Right before the kids went to bed tonight, Andrew showed off his jumping to my mother-in-law and Daddy.  He was unsure about himself at first, but with my encouragement he began jumping and jumping and jumping.  Hailey also stole Grandma's phone and had quite a pretend conversation with "Poppy" on the phone.  We told them that he was at the doctor and would be back soon, so Hailey thought she would call him.  I wish that I had my phone with me so I could videotape her pretending to talk to Poppy.  It went something like, "Hi Poppy.  It's Princess Hailey.  Hi!  Yeah, okay.  I will.  No puppies."  Then I finally made her say good-bye and give Grandma back her phone before we lost track of it.

Everyone have a great Tuesday.  I have a few posts to catch up on, so hopefully I'll get up some great photos of the kids from this month by tomorrow morning.

31 For 21: Day 23...The Buddy Walk Numbers

2010 Andrew's All Stars

I know I already mentioned the Buddy Walk that was held at Hammonasset State Park in Madison last Saturday, but I have an update.  Our team, Andrew's All Stars raised $1825.00 this year!  It was less than last year, but I have been so crazy with everything else, that I didn't send out our donation request letters until the week before the walk.  And I only had time to email them out so only people that are on my email list got the letter plus Facebook friends and readers of this blog.

I feel really terrible that I slacked off on raising money this year.  I know that I have been doing a lot of work for the CDSC this year, but I always want to do more, and I expect more from myself.  The Buddy Walk is our major, and I mean MAJOR source of funding for the year.  Without the success of the Buddy Walk, we would not be able to do many of the things that we do to support our families.  Our annual convention this month is one of them.  I will be presenting a session at the convention this year, titled "New Parent Discussion Panel."  It's designed for new and expectant parents.  I will be presenting with Cheryl McAuliffe, the chair of the Holland Committee, which is our new parent support team.  We provide a first line of contact for new and expectant parents and send them a packet of current information about Ds, and also includes a handmade baby blanket (I also knit some of these!).  I hope to be able to provide support to new parents during this session and find out how they need that support and how the CDSC can help them.  I wish this sort of session was available to me when I first had Andrew; I think it would have been helpful to know more about what programs were available and what the CDSC does.

But back to the Buddy Walk...I have read unofficial numbers so far, but no final totals yet.  I have read that over 2500 people attended the walk and we have raised over $100,000!  That is already more than last year.  I am so thankful and amazed by the amount of support that our community of friends and family provide every year, both with their donations and their support at the walk.  I think I cry every year when I see how much support and programs we can provide to our families. 

So, a big THANK YOU to or family and friends who not only supported us last week with your donations, but also to those who walked with us on that cold and windy day...my mother-in-law Stephanie, my aunts Melanie and Geri, my uncles Ed and Steve, and my cousin Carly and her friend Jose.  We are so thankful for your support!  Oh yeah, if you've been meaning to make your donation, but forgot about it, there is still time at www.ctdownsyndrome.org.

Here is our list of supporters this year (in no particular order):
Patricia Boyle
The Bassette Family
Mike's Truck & Trailer Repair (Mike & John Maselli)
The Sim Family
Geri & Steve Nelson
Stephanie Yahara
Pamela Mola
The Reeves Family
Carol & Charles Cattanach
Allison Herold
Sarah Roy
Robyn Bacon

31 For 21: Day 22...This one's for you, Bonnie!

Bonnie!

In case you were counting...I missed a number.  That would be Day 21...yesterday.  I fell asleep on the couch watching CSI and The Mentalist.  I have been exhausted due to staying up late at night with the television and then being woken up early by my almost 4 year old alarm clock...yes that would be Andrew!  So tomorrow, I will post twice to make up for it and fulfill my promise of 31 posts this month!  Onward...

My mom and I have a small staff that works for us, mostly in the summer, but now that we have farmers' markets all winter, some staff stays on for the year.  Everyone loves to see the kids when they are there and they have all grown attached to Andrew and Hailey.  Since Hailey is the more outgoing of the two, although that isn't really saying much since Andrew is SO shy, she was eager to learn everyone's names this summer.  Everyday, Hailey would run to the kitchen door to see who had arrived.  "Pam!"  "Hollis!"  "Bonnie!"  And her favorite, "Emma!" who was her babysitter a few mornings a week.  Hailey learned their names quickly and called to them whenever she saw them.  Andrew, however, would run to the kitchen and then flew back to the living room as soon as he saw anyone.  They would follow him and attempt to get a hug, a "hi" or a high five.  Nine times out of ten they left disappointed.  It took most of the summer for Hollis to get Andrew to say her name.  High fives came easier though and I think Andrew misses her now that she's back at college.

This fall, my mom and I realized that we needed more help.  The markets were still busy and we couldn't keep up with all the pot pies and dessert pies we needed to make each week.  We called Bonnie, who sometimes worked for us, but mostly for prep work and service for large catering jobs.  She agreed to help us out one day a week, on Tuesdays when my mom was babysitting the kids.  Andrew seemed to like Bonnie.  He wouldn't duck and run away as quickly when she was there.  She would also do endless "potatoes" with him.  Potatoes is something my mom made up...it's just like a fist bump...two people tapping this fists against each other while saying, "POTATOES!"  Andrew loved to do that with us, but not so much with other people.  But Bonnie could always get Potatoes from Andrew.  He also learned to say her name pretty quickly, in fact, "Bonnie" was the first of our employee's names that we ever heard him say.  I don't even think it's been a month that he learned it, but he says it very enthusiastically, even when she is not working.  "Bonnie, Bonnie, Bonnie!"  He says it over and over.  If you're not listening carefully, you may even think he's saying, "bunny."

Whenever Bonnie sees Andrew, she always asks him what he did at school that day.  He answer is always the same, no matter who asks him..."Paint!"  He LOVES to paint.  At his private nursery school, they always have the easel with the painting supplies setup and he brings home at least 2 masterpieces everyday.  Not knowing what to do with all of them, I have been stacking them up once they are dry and I am going to wrap Christmas presents with them.  I'm "going green" and recycling the paper and then everyone will get special wrapping paper this year.  Last week, Bonnie asked Andrew for one of his paintings.  See, they had a conversation about Andrew being famous one day.  Bonnie asked him what he was going to do when he grew up, and of course, he said "Paint!"  So, we promised that she could have his next masterpiece so she could have one of his early works.  Watch out world!  Those Christmas wrappings will be worth a bundle of money someday...don't throw them away!

So, Bonnie!  This one's for you...he painted it on Thursday just for you.  He told me so.  I asked him what we were going to do with this painting, and he said, "Bonnie!"  Love that boy...he always keeps his promises!

Bonnie's Masterpiece

by Andrew Yahara



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 18...Just Some Facts

Down syndrome is a common genetic variation which usually causes delay in physical, intellectual and language development.  Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.

• The exact causes of the chromosomal rearrangement and primary prevention of Down syndrome are currently unknown.

• Down syndrome is one of the leading clinical causes of cognitive delay in the world – it is not related to race, nationality, religion or socio-economic status.
• The incidence of Down syndrome in the United States is estimated to be 1 in every 800 live births.

• Of all children born in this country annually, approximately 5,000 will have Down syndrome.
• There are approximately 1/4 million families in the United States affected by Down syndrome.
• While the likelihood of giving birth to a child with Down syndrome increases with maternal age; nevertheless, 80% of babies with Down syndrome are born to women under 35 years of age, as women in that age group give birth to more babies overall.
• There is wide variation in mental abilities, behavior and physical development in individuals with Down syndrome. Each individual has his/her own unique personality, capabilities and talents.
• 30% – 50% of the individuals with Down syndrome have heart defects and 8% – 12% have gastrointestinal tract abnormalities present at birth. Most of these defects are now correctable by surgery.
• Individuals with Down syndrome benefit from loving homes, early intervention, inclusive education, appropriate medical care and positive public attitudes.
• In adulthood, many persons with Down syndrome hold jobs, live independently and enjoy recreational opportunities in their communities.

Re-printed from www.ndsccenter.org.

31 For 21: Day 17...Signing Times!

Okay, I admit it.  I'm not the best at following through on things.  Sometimes that even includes things that might be important to my kids.  When Andrew was first born, I learned that many children with Ds use sign language as a means to communicate before they can talk.  So we went out and bought the first two Signing Times DVDs...the Baby Signing Time series.

We still haven't learned signs for chicken or ketchup.

Andrew started watching "Baby Signing Time" when he was very young, before he was a year old.  We even collected more videos for his first birthday and Christmas.  He liked to watch them...sometimes.  We would learn the signs for things that he needed most often.  But then this difficulty with following through began.  We needed to learn more signs for common items, signs like "ketchup" and "chicken" that were not taught on the DVDs.  I never remembered to look up the signs when I was sitting at the computer, so every night at dinner we would ask Andrew what he wanted to eat, and if he wanted ketchup with his chicken and we kept saying that we really should look up those signs.

Soon after Andrew turned one, he began trying to talk more.  His first word was "more" followed by "dada."  His speech therapist continued signing with him during his sessions.  We crept along with signing until Andrew decided to stop speaking.  The word "more" turned into the sign for "more" even though he had been able to say it for months.  We learned that Andrew had excess fluid in his ears, most likely causing him to not be able to hear us speak to him.  A short surgery to insert ear tubes quickly cleared the fluid in his ears, but the signing persisted and it took a long time for Andrew to learn to speak "more" again.  I was convinced that once he learned a sign, he wouldn't speak the word...the sign was so much easier for him.  I discontinued signed altogether.

At Andrew's transition meeting before he entered preschool in December 2009, the speech therapist noticed that we were not signing with him.  I stated my reasoning behind it, and she could see my point-of-view, but felt that the signing would be necessary for Andrew to communicate with his teachers and with me until he was speaking clearly.  Even though I wasn't sure that pushing signing again with Andrew would help him, I agreed to try signing again.  Months went by, follow through on signing was neglected...AGAIN.  Finally, I pulled out the Signing Time DVDs and started with Baby Signing Time Volume 1, figuring that when Andrew either re-learned the signs or got tired of it, I would move on to the next DVD.  I was so tired of watching SpongeBob and Barney, I thought I'd try again, just to keep my sanity.

Andrew's response to the DVDs was shocking!  He was picking up all the signs, and quickly.  Hailey was even enjoying it too.  They continued to ask for the DVDs whenever it was time to settle down after dinner with some TV before bed.  Andrew started saying, "Baby Time, Baby Time."  Then he would sign "Baby Signing Time."  He was actually speaking and signing at the same time, consistently!  Plus, he started learning the words that coincided with each sign.  He was speaking new words every day.

Not only did Andrew learn every sign in both "Baby Signing Time" DVDs, but he learned how to speak each one of them as well.  His vocabulary more than doubled in less than a month.  His speech has progressed more than with just speech therapy alone.  As thrilled as I was with his success, I also felt guilty.  I wondered if Andrew would be much more ahead, with more developed speech had I continued with the Signing Time DVDs earlier.  Maybe he could be speaking sentences by now...maybe he would be understood by his classmates.  The questions kept hitting me over and over again.  Did I do an injustice to Andrew by insisting that signing was preventing him from speaking?

Do we ever really stop second-guessing ourselves as parents?  Andrew was my first child, so I never knew what was "normal"  in terms of development, what was "normal" in terms of teaching your child how to speak.  With Hailey, everything just came naturally.  We didn't have to teach her to roll from her back to her front, how to crawl, or even how to walk.  After months and months of working with Andrew to achieve his milestones, it was so strange to me that Hailey did everything on her own.  I thought his speech would progress in the same way...continue to work on it, use the prompting skills I learned in his speech therapy sessions and practice, practice, and more practice.  Watching the DVDs was so different, and they were fun, filled with music, silly songs and lots of kids to watch.  We all now look forward to watching the DVDs every night before bed.  Andrew's birthday and Christmas are coming up again and I will be asking his relatives and Santa for more to watch.

31 For 21: Day 16... Today's Buddy Walk

Well, this year's Buddy Walk is officially over!  It was a very chilly and even more windy day!  But that didn't stop over 1500 people from coming down to Hammonasset State Park in Madison to walk with us.  I don't even know how much money was raised for the Connecticut Down Syndrome Congress yet...it was too windy from where I was standing to hear the totals.  I think I might have heard something about $92,000, but I'm not really sure.

Chris' boss gave us a donation again this year and said that if we could get a picture of Sonia Baghdady, a news anchor from WTNH Channel 8, wearing one if his "Mike's Truck & Trailer Repair" t-shirts, then he would double his donation.  Well, check out the picture below! 

Chris with Master of Ceremonies, WTNH News Anchor Sonia Baghdady

Chris called his boss from the walk to tell him that we got the picture.  I then told him that I was holding onto the picture until he gave us $100 more than the amount he promised.  I emailed the picture to Sonia and told her that I was going to hold out for more money.  I received the following email back from her tonight:

"Thank you Kim! Love it!! Milk it-- Get all the cash you can from him.  Tell him to make it $300... and I'll come down to Mike's Truck and Trailer and take a pic with him!  Great meeting you today...
Sonia :)"

Wait till he hears that one!  We'll see if he'll actually agree to it, but it would be great for our team to add another donation to benefit the CDSC.  More programs and events for our members, more support and outreach to new parents...the list of things that we accomplish with our donations are endless!

Below are more pictures from our Buddy Walk today:

31 For 21: Day 15...Buddy Walk Tomorrow!

Me and Andrew at last year's Buddy Walk.

We're busy today getting ready for our farmers' markets this weekend (as usual), PLUS I'm getting ready for our Buddy Walk tomorrow afternoon!  It's going to be windy and cold on the beach tomorrow.  No matter what the weather, it will still be a FUN day!  I always enjoy seeing friends that we haven't seen in awhile and have them walk for us to help raise money and awareness for Down syndrome.  I really appreciate that my aunt, uncle, cousin and mother-in-law have walked with us every year since Andrew was born.  This will be our 4th Buddy Walk!  Last year, I actually made team t-shirts for us and I made a few more tonight for anyone else who joins us.

I am looking forward to a FUN and chilly day at Hammonasset State Park in Madison.  The registration begins at 11am with Opening Ceremonies at 12:45pm with emcee Sonia Baghdady from WTNH Channel 8 television.  The 1 mile walk begins at 1pm along the board walk.  It is so beautiful to be towards the end of the procession and see the long line of people walking in front of us.  It really is amazing to see how many people have a friend or family member with Ds and how many of them come out to support us.  Plus Chris' boos said that he will double his donation if we can get Sonia to wear a "Mike's Truck & Trailer Repair" t-shirt and have her picture taken in it.  Hopefully that will happen and we can get the extra donation!  Pictures will come tomorrow...as long as I remember to bring the camera...and fresh batteries!

Everyone have a GREAT weekend!  More inspiration and stories to come next week!

31 For 21: Day 14...Shedding a Few Tears this Month

I have been taking this month reminiscing about Andrew's growth and development this month, mostly in honor of National Down Syndrome Month.  I am usually so busy that I don't have the time to look back, only press forward to get through the day.  I rarely even think about the next day until getting ready for bed...and then remembering something important that Andrew needs for school that I forgot to take care of.  Taking the time to look back on our journey so far has brought me to tears many times.  The joys of Andrew reaching his milestones just when I was so frustrated for both of our efforts to getting him there has been enough to start the waterworks and then seeing the photos of him sitting independently for the first time and when he finally took his first steps kept me crying with happiness throughout the day.  While I hate watching him struggle to learn new tasks, I am awed and proud of how hard he tries to learn something new.  His teachers and therapists at school confirm that he tries so hard to please and will sit and work at something until he finally figures it out.  He is now learning to use scissors at school and I keep receiving beautiful pages of artwork featuring strips of paper cut into jagged lines and uneven circles cut around an animal that he has colored for me.  I look forward to opening his backpack everyday to see what special project he did that day and he shows them to me and excitedly points to something on the page and tells me what it is.  I'm such a proud mom, and love to share Andrew's accomplishments with anyone who asks me about him.

Today, I read a short story and then watched a photograph slideshow tribute that a Connecticut mom posted today in honor of her son with Ds.  Another mom who is so proud of her son and his accomplishments.  It is a beautifully written story and the photos are truly AMAZING!  Danielle's goal is to "educate the mother of the unborn child who was just diagnosed with DS."  While I can certainly relate to her feelings of instant acceptance for her son, no matter what her diagnosis, I'm pretty sure that many families who receive a diagnosis of Ds, either prenatally or postnatally, do not have the same reaction.  Chris and I have always felt, from the moment that we received Andrew's diagnosis, that there was a God that chose us to parent Andrew.  I once say the following saying posted by someone on Facebook and I firmly believe that it is true:

"God doesn't give children with special needs to stronger or special people. He gives children with special needs to ordinary weak people! An then gives them the strength! Raising a child with special needs doesn't take a special family, IT MAKES A SPECIAL FAMILY!!!!"  I have found that Andrew teaches me much more that I could ever teach him...the way a smile could turn someone's day around, the beauty in a just-fallen leaf, the amazement of a spider spinning a web between the trees, and the sheer delight when you hear a child laugh.  Yes, the beauty and joy of raising a child with Ds can be challenging sometimes, but the rewards at the end of the day far outweigh our challenges and I feel blessed to have been chosen as Andrew's mother.  God doesn't make mistakes and I am thankful for the decisions He has made so far and He will continue to guide us through Andrew's life so we can know that we can make the best choices for him as he gets older.

I am sharing the link to Danielle's story and photo slideshow.  It is well worth the time to take a look at it.  Take a few minutes and remember the births of your children and the miracle of it all. 

http://photopeach.com/album/i37o39?ref=fb

31 For 21: Day 13...Wordless Wednesday