Friday, August 31, 2012

A small town evening

One of the things I love best about our town is the events like the 4th of July parade that show just how small town this sprawling metro community is at heart.  People stand up for the flag or veterans and wave at neighbors even though they have never met.  Another perfect example of this is the summer concert series.  The last Friday of each month during the summer there is a free concert on our town square.  People lay down blankets, bring dinner, dance and listen to the music - no matter the heat index these concerts are always packed.  We have been taking Cate to these concerts since she was an infant.  She used to fall asleep on my dad's chest with the music blaring away.  When she was a toddler, she was a little afraid of the loud music but eventually she discovered the joy of the dance floor and would drag daddy out as soon as the band started.  I read quite a few blogs and lots of posts on a DS message board.  I read stories about the lady in the grocery store who told a mom of a toddler with DS she was so sorry and when the mom said no she is great the lady replied "no it really is sad".  I've read board messages from mom's afraid to go out because people stare at their children and make more stupid comments then I could ever list.  It makes me sad that there is a world out their that doesn't understand but it also makes me proud that my community seems to get it for the most part.  When we go to these concerts no one even notices us, except to smile at the cute little girls.  I've never felt like Cate was anything but welcome, accepted, and just like everyone else.  As we caravan in with our double stroller (more to carry stuff then kids these days), if Cate graces someone with a wave that person always smiles and waves back.  Dancers make way for her to twirl with her daddy and smile at her pure joy.  Maybe I'm naive but I don't see pity in the smiles from our community, I see appreciation of her extreme cuteness.  Too bad summer almost over - Cate is going to be sad on the day I tell her there isn't a concert this month.

PS - I took these shots with my phone, I didn't set up this photo shoot - the first picture they were just playing some game they made up together.  I only went over because I was envisioning Lucy taking a dive into to that fountain, after the splashing she was pretty wet but it was hot so she was dry by the time the concert actually started.

Wednesday, August 29, 2012

Happy Birthday Ric

Happy Birthday to a daddy who is more loved then any person on earth by these two little girls.  Cate completely believes her daddy hung the moon and both girls come running the minute he gets home for their hugs.   Happy Birthday to an awesome husband and a superhero father.

He is:

.. a takes his daughter fishing daddy. (2010)

.. a teaches his girls to be silly daddy. (Oct 2011)

... a master pinta helper daddy. (Dec 2011)

.. the one who helps ward off the first day jitters. (Aug 2012)

..a  teaches her to ride a bike daddy. (May 2012)

..  a plays the part of the willing "soup" customer daddy. (June 2012)

.. a slow dances and
twirls with his girls daddy.  (June 2012)
..  a gives horsey rides even when they are too big daddy. (Oct 2011)

.. the absolute best couch cuddler daddy. 
.. a gets down in the sand to play daddy. (July 2011)

.. makes his girls fly daddy.  (July 2011)

..  always has open arms and

will catch you daddy. 

.. inspires kisses daddy.
.. the daddy we love to the sun and back.
.. simply one of the best people I know.

 Happy Birthday Ric!

Tuesday, August 28, 2012

The big race to bedtime

So many of you have read my recounting of the horrible first two weeks of kindergarten.  I hope you didn't think that my lack of postings last week was related to Cate in school.  It was solely a matter of me trying to get into a routine and not being very successful.  Somehow the littlest bit of homework added to a need for early bed time is hard for me to manage.  I feel like I'm in a race - I leave for work at 6:30 am, rush to get my work done while trying to ignore the pull of the Internet that wants to distract me, run out the door at 3:05 to pick up Cate then Lucy.  Once we are home I should feel relief but that is actually where the real stress begins.  Somehow the hours between 4:00 and 8:00 move at double time so what should be a 15 minute snack break for the girls to watch one episode of Doc McStuffins while I wash lunch boxes and empty the dishwasher ends up taking until 4:30.  Then the homework that should take 10 minutes takes a half hour so before I know it its 5:00 and I haven't even started dinner yet.  Given the perfect weather and my new goal of less TV before dinner, I've been getting the girls outside after homework and before dinner.  It is great for them but does add to my time crunch because they drive me crazy until I submit  ask so sweetly to be pushed on the swings that I can't resist and end up staying out there for a little while.  After I extricate myself from swing pushing duty, I rush back inside to make dinner, set the table, and pack lunches.  All the while watching the clock rush towards 6:30, when I was hoping to eat at 6:00.   Then I make another mistake - and yes I make it every night thinking it will turn out differently (definition of insane right?) - and let them watch "one" TV show while Ric & I clean up the table and kitchen.  So now my plans of a 7:00 bath and sleeping by 8:00 are toast because I have to pull them away from the TV to make them clean up the mess in the room and hustle them upstairs.  Of course they are the masters of stretching out bedtime so it is much more likely we are just starting their nightly episode of "monkey" (Curious George on PBS) at 8:00 instead of turning off lights.  I know you are thinking that at this point letting them watch TV is crazy but that is actually the one thing that works in this schedule.  It is a pretty calm show that Cate has been watching right before bed since she was about a year old.  It normally has them calmed down enough to read a story to and then put to sleep.  It is also frequently the first time that I actually get to sit down for a few minutes before I have to finish the work downstairs I didn't get to before bath time.  Lucy usually sits in my lap and cuddles with me while Cate cuddles with daddy on the bed.  I love monkey time - it is a great part of my day even though I can quote every line of every episode of the PBS show and on the rare occasion we see a new one Ric & I actually celebrate!

I know you are thinking - why not get Ric to help in this crazy routine or move some of the tasks to other times.  To answer the first question - poor Ric has had just as crazy a day because he got both girls to wake up and get ready for school, fed them breakfast then delivered them to their schools before driving the 45 minutes downtown to work.  Then he fought rush hour to get home by 6:15 if he was lucky - later if he wasn't.  Of course at that point I suck him into my frenzy until bath time when I try to let him unwind for a few minutes in prep for the bedtime ritual.  As far as moving tasks to other times - I'm trying and failing so far but I should have it figured out more or less by the time the first holiday breaks roll around to disrupt everything.  And of course this rant doesn't even account for the one day a week when Cate has therapy so I didn't get anything done except homework.

But you know what - I'm incredibly thankful for everything I just said I have to do.  Know why??  Because it is regular life stuff and there is so much value in the normality of it all - I don't have a kid with medical concerns so I can be at work without worrying about the next call from the nurse, I don't have a kid who needs special care so she can go outside and play by herself, I have an independent kid who can direct her own play and keep safe without needing my help or direction, and I even have kids who can do chores and help me out in little ways.  My life is as normal as a multiple kid, two working parent house can be and that is awesome.  Of course I have to remind myself of these facts every once in a while.  And while all this craziness swirls around me, Cate & Lucy remind me how great our life is by telling me they love me unprompted or asking to kiss my cut finger.  They remind me when I feel happy as they cooperate to sneak off with the iPad to watch DisneyJr Live.  They remind me when I am proud as they remember their table manners or help each other out.  Keeping things in perspective is so important - so I'll keep running this race to bedtime every day and remembering how lucky I am to be doing it.

Monday, August 20, 2012

A photo shoot of Cate

A couple weeks ago Cate did a photo shoot to be included in a gallary of special kids for a charity event.  The pictures were all taken by Nina Sheilds and I think they are excellent!

Friday, August 17, 2012

I love the tooth fairy!!

Cate lost another baby tooth yesterday - her 5th so far.  This one is on the bottom, to the left of her front teeth so its not nearly as noticeably cute as front tooth gaps from last time!  It was also a big bugger - the new tooth is coming in way to the back, so it only loosened the baby tooth in the back not the front.  That tooth was wiggly for at least two months.  The last week it was so loose in the back you could pull it completely forward until it was parallel to the other teeth - gross I know.  But as much as we wiggled it just refused to come out.  I had warned her teacher on Monday that I thought it was close and it turns out that was a good thing because she finally wiggled it out yesterday in class.  At least Ms. B was shocked to see Cate with a bloody mouth holding a tooth!  Ms. B sweetly sent it home on an index card in a baggie so there was no chance it would get lost.

There is something so perfectly childhood about the tooth fairy.  It different than Christmas or Birthdays, I guess, because it comes somewhat randomly and unexpectedly without the anticipation that precedes an holiday.  Also it is uniquely individual - no sharing the fun with friends or family.  We talked about the tooth fairy coming on the way home from school and Cate was happily explaining the process to me.  She would put her tooth in the tooth fairy pillow, then put it under her pillow, while she was sleeping the tooth fairy would bring a treasure and a book.  ((me:  mmm a book huh - glad I asked ))

Cate was so excited last night as she put her tiny tooth in the little tooth fairy pillow and tightly put down the Velcro.  She put it under her pillow directly under her head for safe keeping.  We read her favorite bedtime story - "Birdie's Big Girl Dress" (she thought she was taking advantage of me as the reader because her daddy has read it so many nights in a row that he refused on Weds night!) and afterward I might have said "I wonder if there are more Birdie books?" <which I knew was true thanks to Becca!!>.  Cate responded on cue - "I wish I had another Birdie book".

The tooth fairy started a tradition at our house.  She brings a gold dollar coin and a little gift for each tooth.  This tooth was no exception, Cate was jumping up and down to find that the tooth had been replaced with a gold dollar and there was a new book "Birdie's Big Girl Shoes" under her pillow.   Cate told me "the tooth fairy heard my wish!!!".  I think this will be the next book to get read to shreads!  Cate is so proud of the coins which she keeps as treasure in a little glass piggy bank that was a gift from one of my mother's friends when she was just a baby.  I even stayed home a little while and was ten minutes late so I could see Cate after she found her prizes.  It was worth every minute to see that shinning face!  You just can't beat the excitement of the tooth fairy before and after the delivery!

No more wiggly teeth so I think we'll have a bit of a wait until the next one so it should be just as much fun!

sorry no pictures yet - I'll try to get one tonight and add it later!

Monday, August 13, 2012

First Day of First Grade!!!

I know, I know - bad blogger to not keep a promise of pictures on Friday. 
Here you go!

We did our traditional front porch pictures - my parents made me do them all the way through high school!
Cate's new backpack!  I LOVE it!

daddy's girls

mommy has to tickle them to get those smiles!

Cate's school is awesome - it is an arts & music focused teaching school, for example when the kindergartners do their pre-math skills of learning patterns, in addition to doing worksheets where you have to fill in the next shape or color in the pattern, they might have a lesson in dance class where the pattern is clapping, stomping, and turning around, and a music lesson where they do patterns of loud & soft music notes.  It is an excellent environment for Cate as all kids to have multiple methods of learning a skill.  For the first day of school, the teachers & admin put on a "red carpet" extravaganza!  They actually had a red carpet from the drop off area to the door, the teachers dressed up like movie characters, and there was even a little stage with a film backdrop for all the paparazzi to take pictures.  It was so cute!  The teachers had warned us it would be a little chaotic so we had planned on walking Cate into her room that day.

red carpet entrance - Cate of course didn't care for the paparazzi

all she cared about was getting her hands on CoCo the Guinea pig!

Cate had a great first two days of the first grade. We lucked out and her new teacher, Ms. B, has a special needs background so she is not taking any of Cate's manipulative actions. When I sent an email to check on Cate the first day she told me that Cate had left the room to sit outside the door within minutes of us leaving so she gave her a stern lecture on not leaving the classroom, after that she was great in the classroom. Until the first couple transition to other rooms when she tried to tell the teacher she didn't feel good. Ms. B redirected her with some questions and eventually she stopped asking. Score major points for Ms. B - those are two of Cate's most effective manipulations! Normally she gets a new activity from leaving the room and gets a trip to the nurse for saying she doesn't feel well. A couple days of those not working and they should stop for the most part - of course she'll probably come up with something new to get out of activities she doesn't like! I don't envy any of Cate's teachers trying to figure out the manipulations from the true complaints, but they are good at it!
showing daddy the way to her new room
a little unsure in the new room with kids in it!

a big goodbye hug

sitting at her real desk!  wow this is big stuff

This is such a different start to the school year than last year when we had so much uncertainty and so many little behavior issues.  It really goes to show how much teacher and admin support can help when they have the right background and preparation.  Everyone is welcoming Cate with open arms and she responds accordingly.  Her teachers read her "all about me" packets and are doing everything they can to make sure she comfortable and performing her best. I hope with all my heart that this is our new normal start to a school year for Cate!  My big girl!  A first grader - I can't believe it.  I have no doubt she will do great this year - but the real question is how am I going to deal with spelling tests, math assignments and 250 sight words????

Wednesday, August 8, 2012

Cate's All About Me Packet

So I officially had to change my blog header because I am no longer the mom of a kindergartner.  Today was open house, tomorrow is the first day of school and Cate is officially a First Grader!  We are thrilled with her new teacher, her new classroom and her new schedule so I am hoping for a great year!

Last year prior to Cate starting Kindergarten I came across a DS message board post about someone doing an "All About Me Packet" for their child every year for school.  They had a link to a packet created by the Down Syndrome Guild of Greater Kanas City.  After our terrible Kindergarten Kamp experience I decided that this was a good first step to help give the teachers the information they needed to help Cate be successful.  So I modified the packet using the suggestion from the post about using lots of pictures and giving specific info both good and bad.  I took one copy to the school last year and they ended up copying it and distributing them to every teacher Cate would have that year.  The teachers loved it, I got comments and thank you's for weeks after school started.  So this year, even though Cate's main teacher and the special's teachers already know her from last year, I decided to do it again.  I figured I could add some of the motivators we learned about in Kindergarten and give them some insight into Cate's summer.  Well the teachers seen equally happy to have this years packet. 
Here is an editied version of our packet, its pretty long and had lots of info about Cate in it so if you decide to sign off now - watch for first day of school pictures tomorrow or Friday!  If you are interested in doing a packet of your own and want to start with my template, please send me an email at and I'll forward you one or go to All About Me Packet - KCDSG.

All About Me!

We are pleased to share our All About Me booklet with you. This booklet contains a lot of information about our child, Catherine … (Cate) and our family.
We hope that this information will help you to get to know our child and some of her interests, strengths and skills.

We have high expectations for Cate just as other parents do for their children. We hope she will follow school rules, perform to the best of her ability and be a contributing member of the class. Good teaching and positive peer role models will help Cate be successful.
If you have any questions, please call us at home, Lisa’s cell or at Lisa’s work

I also have a blog that journals Cate’s life, feel free to visit anytime:
We look forward to working with you this year.
Please let us know how we can help make this a great school year.

Lisa & Ric

My Parent’s Dreams for Me

When Cate was born we worried about:
.. pretty much everything!! Every book we read talked about all the horrible things we had in store for us as the parents of a special needs child – from health conditions to not potty training until late in childhood.  Finally we threw all the books away and just took care of our baby.  Every once and a while a fear about Cate not being accepted or being teased still sneaks in but mostly we are just amazed by Cate’s strength, will, and intelligence every day.

Cate - First Easter 2006
Our hopes for this year are:
We hope Cate is able to continue making friends this year in First Grade.  We want her to participate to the best of her ability and keep up with her peers for as long as possible.  We hope that she will make great improvements in reading and sounding out words this year and that she will be able to participate in all First Grade activities.

Here are some ways we think you can help Cate be successful:
Be strict but kind.  Cate is very sharp and knows when she is being underestimated or can get her own way.  It is important for her to follow the rules and participate but sometimes she will be very stubborn about it until she figures out she can’t get an exception for herself.  Most of all we know if you have as high of expectations for her as you do for your other students, she will respond and succeed.  Cate loves one on one attention from adults and will take advantage of any opportunity to separate herself from her peers.  Encourage participation and don’t allow her to manipulate her way into a special accommodation that isn’t necessary.

Our lifetime goals for Cate are:
We hope that Cate will be able to find a job that she is good at and that brings her satisfaction and happiness.   We want Cate to have a higher education experience if she wants to attend a special university program.   We feel sure she will want to live independently at some point after she reaches adulthood and will do everything we can to give her that option if she wants it.

Here is My Family

My name is Catherine …, my family calls me Cate.

My Mom is Lisa, she works very close to our school as an Accounts Payable & HR Manager.

My Dad is Richard, he works as a Manager in Finance in midtown.

I have one sister, Lucy, she is 3.5 years old.

We have a pet cat.

My maternal grandparents, Ruth Ann and Ray live here.  They are both retired and are very active in my life.  They travel in their RV during the winter.  I love it when Grandma picks me up from school!

Other family or friends that I want you to know about are:
·       My Great Aunt Mary, Great Aunt Wanda, and Great Uncle Pete as well as my cousin Kim all live here and are active in my life.
·       My paternal grandparents (Nana & Grandpa North) live in NY.  I also have one uncle in Texas, another in Savannah, and an aunt in KY – along with 9 cousins.
·       My Uncle Lane & Aunt Brandie (in the picture) live in FL.

Interesting Facts About Me!

My favorite activities are dancing, playing with the ipad and watching TV, especially Fresh Beat Band, Doc McStuffins, Wild Kingdom and animal or princess movies.

 My favorite color is pink (for now – it changes frequently!)

When I go outside, I swing at the playground, swim, and be creative with the things I find like mulch and leaves.

My favorite hobby and other activities are swimming, playing kitchen, reading or looking at books, playing doctor or teacher.

 Three things that really motivate me are:
1)    “Helping” – I love to be a helper.
2)    Animals – I love any type of animal so visitation or alone time with a school pet is something I will work to earn.
3)    Playtime – I love to explore and have free time, the incentive is even higher if that time includes some one-on-one play time with an older child or adult.

When I grow up I want to take care of people or animals, if you ask me I’ll tell you I want to be a zookeeper!

        Health Considerations

Here are some things you may need to know about my health:
-        I had a complete AV Canal Heart defect and a VSD when I was born.  When I was 4.5 months old I had surgery to repair it at Children’s Healthcare.  The repair was completely successful and I have no current activity restrictions but you will probably notice a large scar on my chest.  We celebrate the anniversary of my surgery on May 9th every year.
-        I had my tonsils and adenoids removed when I was two years old.
I have ear tubes in both ears to help deal with fluid build up but I rarely get ear infections.

Current Medication (s):
blood pressure medicine, I take to make sure my heart stays healthy, I have never had a heart related issue – it is just preventative.

I do not wear glasses or hearing aides.  I do not have any allergies either.

When I am not feeling well I might:
be very clingy and weepy.  I rarely tell people I am feeling sick (I have a high pain tolerance) and will often push myself until I have a fever.  But if I’m upset about something else and you ask me if something hurts, I will likely say yes even when that is not the case.  I have figured out the nurse is a great excuse for a break from work I don’t want to do.  Be wary of claims of sickness when I have been fine but am not in the middle of something difficult for me.

Other things you need to know about my health:
Cate has very small ear canals and when the tubes aren’t working correctly they will fill up with fluid very quickly.  She has had an ABR and we are confident she does not have any hearing deficiencies.   If you notice her hearing seems to be getting worse please let us know so we can have her tubes checked.  She currently sees an ENT every 4-6 months to try and make sure we keep them open.  Cate will likely need new tubes early next year.

My Feelings

Things that make me feel happy:
Animals, music & dancing, time to explore, attention, and someone who takes the time to understand my speech all make me happy.   I am pretty much happy most of the time and if I’m not I’m usually easily persuaded to change my mood unless I’m not feeling well or are very tired.

Things that might upset me:
Not getting my way most of all!  It will cause me to cry or pout but I never act out violently.  I also don’t like to lose games.  I get upset about losing a game, just remind me to say “good job” to the winner and that next time maybe I’ll win.

It’s hard for me to:
Make transitions, especially when I want to do something or have been denied something in my current location.  I also have trouble starting a new schedule or getting back into the swing of things after a vacation or break.
Communication with my peers can be hard as well – when I am playing pretend especially I let my speech turn toward babble.

Things I may be afraid of:
Loud noises
Chaotic situations like large groups of unorganized activity.
New situations
New people

Places I Like to Go
Here are some places that I like to go to with my family:
The Beach
My friends’ and families’ houses for parties
Traveling anywhere in my grandparents RV
The Zoo
Out to Eat!

My favorite places to go in my neighborhood are:
The playground, the zoo, the children’s museum
Restaurants like the Deli, Italian, Chick-Fil-A, and the Taqaria
But my most favorite things are the summer concert on the Square because I love to dance on the dance floor with my daddy!

My Summer vacation:
This summer my family went on one short trip and then I attended lots of different camps.  In June, we went to Tybee Island to spend some time with my dad’s family for a wedding.  We played at the beach and danced the night away! 

I had a lot of fun swimming at home but I also went to Vacation Bible School, C Kids Camp, church camp, and my favorite ZOO CAMP!  It was a crazy but fun summer for me, and I’m not sure I want it to end!


Here are some things you may need to know about how I communicate:
I drop certain letter sounds very consistently – especially “s”, “th”, “wa”, “f”  - once you get used to my speech I can usually be understood in context.  It is very difficult to understand me when I’m telling a story I’ve made up, am very excited, or am singing.

I will usually respond well to a single word correction but if you try to get me to repeat a whole sentence I’ll shut down.  I do private speech in addition to my school speech.  We are currently pushing corrections on the word “water”, the “S” sound in general and trying to get me to pronounce the “f” sound by biting my bottom lip.
If I am frustrated I might:
give up trying, or say “I don’t know”.  Sometimes I will completely shut down on an activity and it is very hard to change my mind at that point.  Anything you can do to break my frustrated attitude before that point will help me succeed.

My parents would prefer that you communicate with them by:
Whichever way is most convenient for you – please do not hesitate to contact us with an issue, or with suggestions for home activities to help Cate by reinforcing a concept you are working on with her.

Our home phone number is () – there is normally someone there by 5 pm.
Lisa can be reached at any time by email, at work or on her cell.
Ric can be reached at any time by email, at work, or on his cell.

Look What I Can Do!
Here are some things I do to help around the house:
-        Feed the cat and give her water
-        Set the table
-        Make my bed & clean things off the floor in my room
-        Empty the silverware from the dishwasher
Here are some things I can do by myself:
-        Potty
-        Get dressed (except for buttons & snaps)
-        Put together my breakfast
-        Write my name & all the letters
-        Recite my full name, address (including county, country, continent and planet!)
-        Read 80 sight words – 50 kindergarten words plus the first 30 First grade words
-        Identify a huge number of animals, tell you about what they eat or where they live
-        Use the ipad
-        Swim – jump from the diving board and swim 25 yards
Here are some things I can do if someone helps me:
-        Buttons and snaps
-        Fine motor skills that require finger strength
-        Open packages or bottles
Here is a list of things I do in the community on a regular basis:
-        Eat Out
-        Play on the playgrounds around town
-        Dance at the square
-        Take swimming and dance classes


Myths & Truths
About Down Syndrome
Myth: Down syndrome is a rare genetic disorder.
Truth: Down syndrome is the most commonly occurring genetic condition.  One in every
800 births is a child with Down syndrome.  There are currently 350,000 people in the U.S. with Down syndrome, with 5,000 to 6,000 births per year.

Myth: Most children with Down syndrome are born to older parents.
Truth: Eighty percent of children born with Down syndrome are born to women younger than age 35 due to higher fertility rates.  However, research has shown a link between the incidence of Down syndrome and maternal age.

Myth: Down syndrome is hereditary and runs in families.
Truth: Most cases of Down syndrome are sporadic, chance events.   In general, Down syndrome does not run in families and a sibling or aunt has no greater chance of conceiving a child with Down syndrome.

Myth: People with Down syndrome have severe cognitive delays.
Truth: Most people with Down syndrome have cognitive delays that are mild to moderate.  IQ is not an adequate measure of the functional status of people with Down syndrome.   People with Down syndrome have great potential if given opportunities.

Myth: The life expectancy of people with Down syndrome is 30.
Truth: Thanks to advances in medical and clinical treatment and opportunities to thrive, as many as 80 percent of adults with Down syndrome reach age 55, and many live longer.

Myth: Behavior problems and depression are just part of having Down syndrome
Truth: Often, medical or mental health problems go untreated due to the assumption that it is typical of having this genetic condition. Complete examinations by appropriate health care professionals should always be pursued.

Myth: Children with Down syndrome are placed in segregated special education programs.
Truth: Children with Down syndrome are included in regular academic classrooms across the country. Students may be integrated into specific courses or fully included in the regular classroom for all subjects.

Myth: Adults with Down syndrome may be unable to work.
Truth: Businesses seek young adults with Down syndrome for a variety of positions. They are employed by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.

This booklet was designed by the Down Syndrome Guild of Greater Kansas City