Monday, January 30, 2012

A simple day at the park

Did you ever notice that sometimes the most fun a family can have is when you don't plan anything to do at all?  We have a family pass to the zoo and now one to the children's museum, and probably a hundred other options of things to do on the weekends.  Yesterday when I asked Ric what was in the plans for the day, his only thought was to get outside.  It was a beautiful day - sun shining, no clouds, about 60 degrees - true cozy sweatshirt weather.  So at lunch time we went to our favorite deli to eat then headed to the park.  This little local park is our kids favorite because they have an excellent playground.  It has lots of swings and the main structure is 3 levels with two twisty slides coming down from the top level in addition to lots of climbing options and a good size grass area.  Yesterday after we did an hour on the playground itself, Cate went to meet a couple of dogs that had arrived to run in the grass.  My husband called dogs "her magnet", because as soon as she see them she drops everything to see if she can "go ask" - which means she wants to ask the owner if she can pet the dog.  The owner was great and Cate got to spend some quality dog time and even Lucy got into the petting.  After the dogs wandered off, some twirling and running in the grass started.  That morphed into a game of freeze tag and red light/green light.  I realized I'd never played tag with my girls.  Sure we had chased and tickled but never an "organized" type game of tag.  It was so much fun they did not want to stop.  Fortunately for the panting mom & dad another little girl had sidewalk chalk and offered to share!  Wish I'd take a picture of the awesome way Cate wrote her name on the sidewalk.
Isn't it the best when your day of 'nothing to do' turns into something wonderful??
twirling

Lucy's favorite thing in world is to swing  - she will do it for an hour if Cate doesn't call her away or your arm doesn't give out

sidewalk chalk

this is a picture from last summer when Cate did the slide for the first time by herself

Friday, January 27, 2012

20 Sight Words!!!

A little brag - Cate hit 20 sight words this week!!  She actually has more than that but these are 20 of the 50 required kindergarten words that she has to be able to say from flash card in under 2 minutes.  We are on our way!!  The teacher has been sending home 6 words per week (we are on week 3) then testing those 6 each Friday. We have been working on the 6 new ones separately for two days then I add them to the previous weeks words to make growing stack.  (i know 6 x 3 is 18 - i added two she already knew and that I could use to make sentences)
Check it out!

video
(this was about the 4th time she done it that night hence the "I don't want to do it again" comment)
Cool Huh???

Wednesday, January 25, 2012

Ear Tubes - Success!!

Everything went great today with Cate's ear tube surgery.  I think the hardest part was not letting her eat since the surgery wasn't until 11:15 am.  Dr. G ended up replacing both ear tubes because the right was was starting to work its way out.  Unfortunately it looks like the problem with this set was that her body was rejecting the new type of tube they used in June.  Hopefully that is not a new trend and this new set which is as different kind will stay in for at least a year (the life on this type should be 3 years - I'll live with one at this point).  And there was no sight of the adenoids growing back - YAY!  Cate was amazing.  She played so well during the long wait (2 hour prior arrival time but surgery went right on time), fussed a little but she took the pre-surgery pain meds in one gulp, and had no problem letting the nurses wheel her way.  Normally we put her gown on after they do the meds but this time they were waiting and just took her in clothes.  She was gone less than 25 minutes total, they said she was asking questions and not at all nervous the whole time she was awake before and after.  She came back to me awake & pretty darn happy.  Then she explained exactly what had happened, drank her juice was was release 20 minutes later.  We were having a girls lunch by 1:00 and she ate every bite in between her chattering.  Thanks for all the good wishes  they worked!
about 5 minutes back from recovery and already smiling!

explaining that her IV is a straw in her arm to help her

a demonstration of how the doctor did "poof poof"

already in a silly mood before she'd even eaten

ate every bite of her lunch and part of mine! 

Tuesday, January 24, 2012

Darn Ear Tubes

Our ENT billing department must love us.  We are probably in their budget as an income source.  According to our ENT, Dr G, Cate has very tiny, very crooked ear canals.  They have grown with her but they are still much smaller than a typical ear canal and because of that fluid builds up behind the ear drum very easily.  We first learned this when Cate was a year old.  She had never passed a hearing test to that point so the pediatrician referred us to an Ear Nose & Throat (ENT) specialist.  We found out that Cate's hearing was probably equivalent to her being under water because of the fluid build up.  So in March 2007 we went to Children's Hospital to have ear tubes placed - she also had an Adenoidectomy because her adenoids were so large it was feared they might cause apnea if not removed.  The surgery was very short and the recovery pretty quick even with the adenoid removal.  Wow what a change!  For a little while Cate startled at everything, but within days we heard her making new noises and being much more responsive.  This started our journey with our friend the ENT.  Since Cate's ear canals are so tiny & crooked, they had to place the smallest tube they had and put them at an angle.  Ear tubes have an expected life of eighteen months to two years.  The hope being that by the time the first set falls out the child has grown enough that the ears can handle the fluid without the tubes and they never have to be replaced.  With Lucy this has been true so far, she had tubes after many, many ear infections - they fell out a couple months ago and so far no more infections and no fluid.  Not the case with Cate, hers have fallen out almost exactly one year post surgery - every year.    Every time we discover a tube is coming out we watch her for a month or two until the fluid build up and it really affects her hearing.  So she has had 5 sets - both ears every time (3/2007, 4/2008, 5/2009, 5/2010, 6/2011 - see what I mean about being an annual occurrence?) up to today.  So we should still be good for another 6 months at least right?  Well this time we've had fun kink in the system - one of the tubes they placed in June is now blocked up.  We tried everything , different kinds of drops and even a wick to hold the drops on the blockage but it will not clear.  So tomorrow we are back to Children's Hospital for a new ear tube.  In the past it has been a quick and easy out patient surgery.  They used to give Cate a drug to make her loopy and so she didn't remember the experience, then they use gas to put her out.  Dr. G then takes out any old tube parts that are still in there, drains out all the fluid, and puts the new tube in for each ear.  We have to be at the hospital 2 hours pre-surgery, then once they are ready for us it took about a half hour for the drug to take effect, they'd roll her back then about 15 minutes or so Dr. G has come to give me a report and about 15 minutes after that she comes back barely awake, groggy & unhappy, an hour plus later we get to leave.  In June we tried something different, we didn't give her the pre-drug and instead sent her back awake.  The nurses said she did great and never even seemed scared.  It made everything even easier since the gas wears off so much faster without the liquid - in June when she came back she was already awake, only a little grumpy and 20 minutes later we were in the car.  Hopefully this time it will be as smooth of a process. We will find out how remembering the previous experience plays into the fear factor for her because when we get her all gowned up and ready to roll she will actually remember what come next.  Hopefully this will not be a bad thing, she will go willing and take the gas without distress.   This time they are also going to recheck her adenoids and if they have grown back remove them again.  Its possible they did grow back because she was so young when they were removed the first time, this was a risk we knew about and hope doesn't happen. So keep your fingers crossed for a smooth surgery, no adenoids, and a little girl that can hear much better on the left side after tomorrow.
This is a picture of Dr. Cate taking care of her baby doll in June, hoping for a similar scene this time -

Monday, January 23, 2012

Dance Class Dilemma

Cate confuses me - a lot.  She loves to dance, twirls around all the time (and has ever since she could walk), and pretends to be a ballerina.  So it was the natural thing to sign her up for dance class.  I found a dance studio with a special program for children with Down Syndrome.  I thought it would be great for her because she'd get the dancing she loves without the strict positioning and with that extra little bit of help.   Cate has been attending since September.  The class is great, there is a teenage helper for each of the kids in the class and they do dance but they also do things like pretending to be animals and other fun exercises that work on strength, balance and coordination.  Every Saturday morning she loves dressing in her adorable ballet outfit, she is happy heading to class, frequently hops and dances into the studio, and she loves to put on her ballet shoes when we get there.  Then we step into the dance room where she clings to my leg and does not want to let go.  This is a totally un-Cate-like behavior.  I've been dropping her at daycare since she was 6 month old and therapy sessions multiple times a week since she was 3 - she never pulls the guilt trip on mommy routine I've seen from so many kids.  But for some reason as soon as she sees the helpers, she changes her mind and doesn't want to dance.  I don't think its a being shy thing, this is a kid who yesterday asked a stranger at PetSmart to sit down with her and look at the cats - and the lady did.  She loves to dance, she loves the studio with all the mirrors because she literally pulls me into it, but for some reason she doesn't seem to like the class itself.  We figured out a couple weeks ago that she was telling them she had to go potty in the middle of class every week - going into the bathroom then coming out 5 minutes later.  Interesting part about that is that she can't take off & put on her leotard by herself so who knows what she was doing in there but it wasn't going potty!  I stopped that one by making her go potty before she goes in and making sure her buddy & the teacher know she just went.  Now we are dealing with a scene every time I try to leave her in the room to go out to the waiting room - this week it even included tears.  She also ended up in time out this week because she sat down and refused to get up in the middle of class.  They said after the time out she was fine and participated.
So my dilemma is I don't know how to help her.  I asked the teacher if next week I could sit down with Cate's helper and learn a little bit about her and take her picture so I can try to talk her up to Cate.   That is my only idea and I don't think it is really going to help.  We can't quit now, we've already paid for the costume and recital fee for May.  Funny thing is that if you ask her if she had fun in dance she almost alway says yes and when we get home she wants to show daddy what she did in class.
That girl is just a rascal!
first position
second position

plie

just doing her own thing!

Wednesday, January 18, 2012

From sun and back and to the zoo

You might have heard my title phrase in a previous post.  Cate is an amazingly loving child - she tells people she loves them frequently, unprompted, and from the heart.  Sometimes she tell me "Mommy, I love you to the sun and back and to the zoo".  Since the zoo is her favorite place this is the best compliment she can give.  So this weekend I took the girls for a quick trip to the zoo, gotta love the season pass!  It was a perfect day for the zoo, we only needed sweatshirts not coats, the sun was shining and most of the animals were active.  We spent lots of time watching the gorillas since we hit their habitat just right and they were being fed a snack.  The girls were both fascinated by the mommy & baby pairs and the huge silverback sitting right in the middle eating oranges & grapefruit and throwing away the peels.  They were maybe thirty feet from the glass and all looking right at us since the food was being thrown from the roof above us.  It is crazy to see show many gestures or movements those gorillas have in common with humans.  Especially the mom who was cradling the newborn exactly like I used to hold the girls as babies.
Oddly enough Cate's other favorite thing was watching the zookeepers clean the elephant habitat.  Both elephants were in the elephant house and two zookeepers had raked up all the old stuff and were spreading out groups of fresh tree branches full of leaves and some little piles of something that looked like nuts or small fruits.  Cate asked a ton of questions about what they were doing and why and when the elephants would get to "come home".   On the way home she said "when I grow up I want to be a zookeeper".  I asked her why and she said she wants to clean up and feel all the animals.  This is a common statement from her and you know what, I don't doubt it for a second that she might do just that.


Monday, January 16, 2012

Mid Year Report Card

We got Cate's second quarter report card last week. I think it is pretty good - she met about four standards, had only 10 that were where "not yet demonstrated", but 7 of those were new this quarter, and she had twice as many "progressing" than "emerging". Confused?? You should see the report card with its 42 district wide standards saying things like "uses informal strategies to share objects between 2 or 3 people/sets".  Seriously, this thing took me an hour to figure out.  The whole time I'm reading it I'm imaging how long it must take the teacher to assess each of her 20 students in all these standards every quarter. The days of my kindergarten report card with about 5 items including "plays well with other - "Satisfactory" or "Unsatisfactory" are long past I know.
Overall I'm really pleased with Cate's progress as we pass the mid-year point of kindergarten. Here are her accomplishments as I see it:
• She has demonstrated to the teacher she knows 13/50 sight words based on the testing method of 30 words/minute using one stack of card and flipping them. With me using smaller stacks of grouped words like “color words” or having her pick words from cards on the desk – the number is about 25.
• She knows all the letter sounds and can sound out word parts but has still can't put the sounds together to make the actual word.  It may not be on par with her class but I think it is a great start to reading.
• She knows her safety info – including address, city, state, county, country, continent, planet (her own addition to the standard) & phone #
• She knows how to write all the letters, lower case & upper case and more than half of them are legible if she want to write them! Force her to write and you won’t be able to read it.
• She is showing big gains in math concepts, like she knows all her shapes including three dimensional ones like “cube”, “cone”, “cylinder” and “sphere”.
• Her coloring is improving, she is staying mostly in the line & does color blocking.
• She has the expected bouts of stubbornness that result in a “yellow” or a trip to time out but overall her behavior seems OK for a kindergartner who is expected to do a 7 hour day + home work.  In the behavior section of the report card she got one rating of “Area of Concern” for "staying on task" but the other items like “asks questions”, “pays attention”, "follows school rules”, she got satisfactory scores.
• She attends all the “specials” like PE, Music, Art without a para-pro and got ratings of “meets expectations” and “satisfactory conduct” in all of them.
• She is in a typical kindergarten class and she is MAKING FRIENDS!!! Socially her teachers say she has blossomed and her class really watches out for her without being told. She said when they line up they always make sure she isn’t last in line and if she starts falling behind as they move down the hall they say “hey come on Cate” or gently urge her forward - how cute is that?

Here is a video of Cate saying the months of the year for me - I didn't realize she knew all of them and was loving how clear her speech sounds.  Sorry for my very loud voice when you have to turn it way up to hear her very soft voice.  The bobble at the end was Lucy grabbing my arm to see the phone.
video

Friday, January 13, 2012

Shake up the routine

Normally my husband is the unfortunate one to deal with getting the kids ready for school in the morning.  I say "unfortunate" because Cate does not like to get dressed normally and she definitely doesn't want to do it when the end result is going to school  Although I guess its hard to blame her, when in her mind there is a choice - getting told what to do all day at school or stay home to play and watch TV.  So the the morning routine post a two week Christmas break has not been a fun experience for poor daddy.  But today everything fell into place to shake up that bad routine that we'd all gotten into since vacation.  Lucy woke up at 5:30 because she had overflowed her pull-up, which resulted in her sitting in bed yelling "Mommyyy" until I dragged myself out of bed to help her.  Contrary to my normal habit of going back to bed, I got in the shower and dressed for work.  Cate woke up right at 6, wanting to crawl in bed with Ric but I forced her into the bathroom and got her ready for school.  She was too sleepy to really put up much of a fight but she was not a happy camper being forced to get dressed.  I felt bad so I decided to give her a "treat".  I asked her if she wanted to make her own lunch.  She just about ran down the stairs.  She did a great job and was all smiles when she went back upstairs to play while everyone else got ready.  I guess the lesson here is that everyone needs a change sometimes.  I doubt this will bring on long term change but at least for one morning we all left happy.
She is making a roast beef and cheese roll up to go with the green beans (her favorite lunch item is cold green beans - go figure), pretzels and pineapple.  The carrot is for the guinea pig at school - that was my other bribe, she loves the guinea pig.

Wednesday, January 11, 2012

Funny Things kids say

My kids make me laugh frequently.   A lot of those times its because they says something incredible grown up for their age but sometimes its just plain funny.

Quotes from yesterday:
Cate after school - ParaPro says "see you tomorrow Cate", Cate responses "I'm not coming back tomorrow pumpernickel"  - pumpernickel started out as a silly word we used to break her out of a stubborn streak, now I think its becoming well know at her school as her pet name for people.

Lucy in the car on the way to swimming - "Mommy is the water warm enough for me to swim today?" - she is asking because I only took Cate the week before because her teacher cancelled class for lower than normal pool temps.  How does she remember that one time occurrence a whole week earlier and the explanation I gave her one time??

Cate in the car - "Lucy I love", Lucy "AWWWW, mommy Cate loves me", Lucy "Mommy I'm going to share my pretzels with Cate because sharing is good", Cate chopping away on the new acquisition because she'd finished her pretzels.

Cate in the car - "Lucy I love you, give me that book" - didn't work this time

When I'm getting ready to help Cate with homework I set Lucy up with coloring supplies.  I've been trying to get them to put the caps back on markers so I ask Lucy - "And what do you need to remember about markers", her response - "Don't stick them up your nose" - good advice, of course it steams from what she did the day before as evidenced by the one nostril that still shows signs of being blue

Cate - "I love my family to the sun and back and to the zoo" - this is high praise from her because the zoo is her favorite place.  We have heard "love you to the sun and back and to the zoo" before but it tickles me every time.


random sweet picture from this summer

Tuesday, January 10, 2012

We are officially a gate free house - and that is good, right?

As of Sunday we are officially a gate free house and it feels very odd.  For almost 4 years we had gates on both doors of the living room and one at the top of the stairs.  Right before Christmas we removed the living room ones because the girls kept pushing over an ottoman and climbing over them anyway.    But that gate at the top of the stairs gave us the illusion of safety, knowing the girls wouldn't wander downstairs in the night, instead it was actually getting to be dangerous.  One day a couple weeks ago I found a stool sitting on the hall side up against the gate.  I'm not sure who the culprit was but fortunately no one actually tried that escape.  Then to make matters worse this weekend the girls where fighting over who was going to be "line leader" and I saw the gate start to push over the step.  So I got out the drill and removed the screws on the gate at the top of the stairs.  Of course I still keep reaching for it when I'm heading down!
We also just removed Lucy's bed rail.  Wow - this really means I don't have any babies left.  I'm just not sure if that is a good thing or a sad thing!!

Monday, January 9, 2012

A day at the Children's Museum

My kids love our Children's Museum but being a mean mommy, they haven't been in over a year.  During the week we let them earn chips by cooperating with Ric when they are getting ready in the morning.  On weekends they get to trade in their chips for reward activities like going to the zoo, the pet store, or the aquarium.  They've accumulated a lot of chips over the holidays since we haven't had time to do any family activities, so this weekend we let them trade their chips in for a trip to the Children's Museum.  The special exhibit was fairy tale stories and Belle from Beauty & the Beast was going to make an appearance.  The good news is that they had a fabulous time and we spent almost 3 hours there.  They had lots of dress up clothes and a pretend castle complete with a carriage.  The bed news is Cate didn't want to get anywhere near Belle.  She was OK with watching her from afar but the minute Belle waved or got close, Cate started shaking her head no.  The reason this is bad news - we are planning a day trip to Disney when we take spring break in Florida.  I guess its a good thing that we weren't able to get that reservation for the princess dinner!  She does fine with Santa but I can't say she's had the opportunity to be around any other characters in a couple years.  Anyone have any ideas on how to keep your kids from being afraid of adults in costume?
riding in the Cinderella carriage - the little circle window was a video screen so it look like it was moving

Cate serving the tarts


Lucy wants the whole turkey!

playing Belle's piano

checking out the view from the castle balcony

Saturday, January 7, 2012

Bye Aqua Therapy - Hello Swim Team

Cate started regular PT when she was 6 weeks old.  When she was 18 months old, she didn't show many signs of walking so we added an extra therapy in the pool - Aqua Therapy.   She took to Aqua Therapy like a fish to water (pun intended!).  I have very little doubt that it is the reason that she walked at 22 month.  It is amazing for strength building and very helpful when you have a stubborn child - she learned real fast that giving up or refusing an exercise meant a face full of water.  As a bonus she also learned how to swim (actually Cate could swim unassisted before she turned 4).  By the time she started Pre-K, she had met all her land PT goals so we decided to drop regular PT and just go with a weekly Aqua Therapy session.    Well now she has met the Aqua PT goals too, so we are about to end it as well.  It is crazy because I know I should be happy that she is "graduating" from PT all together but instead it scares me.  I didn't realize to this point what a security blanket therapy is for me.  I'm sure that is a hold over from needing to "do something" to help her when she was a baby.  Back then I knew that her therapists had more patience and experience to teach her the things and even more importantly since I was a first time mother, to know which milestones she should be working on.  So it wasn't easy for me but at the end of January, I'm finally letting go of our PT journey. I can't thank the three therapists we've had over the last 5 years enough for their love for Cate and the guidance they gave to me.   (JG, JH & KM -  WE LOVE YOU!)
Now the exciting part - in February Cate will be starting on an adaptive swim team!!!   
The description of the program is:
The Adaptive Swim Club concentrates on learning and developing swim strokes, improving stamina, team skill development, building self-confidence, following motor commands, and increasing fitness in preparation for bridging over to community based swim team and/or moving forward with pre-Paralympic competitions. Swimmers are coached by pediatric physical/occupational therapists and/or experienced swim professionals.
Perfect for her right???
This is so exciting!  I always wanted to be on a swim team so I hope she LOVES it!.  Keep your fingers crossed that this new adventure is a successful one- who know you might see a future Special Olympian or high school swimmer!
Here is a video of Cate swimming a couple months ago - she might not win any races yet but she's pretty darn good for any 5 year old:
video


Thursday, January 5, 2012

Phew!

I hope I'm not jinxing myself but today was Cate's first day back to school after the Christmas break and I was a little afraid she'd be trouble.  Cate's teacher, Ms E., uses a green, yellow, red clip method for behavior.  For Cate, Ms. E does a morning rating, afternoon rating and a potty rating.  She is a middle of the road girls most days - she hovers around yellow but then once every couple weeks she has a red streak for refusing to leave the playground, or playing around in the bathroom.  After any type of schedule disruption and the possibilities of red increase quite a bit.  Today I'm hopeful was the start of a new streak - She got ALL GREENS!
Don't you just love the school uniform!  Navy or Khaki bottom/dress with a polo - she always chooses the dresses, I think so she can wear fun leggings.  I love the striped tights with the boots she got for Christmas!

poor picture but you get the idea - looks like Ms. E was surprised too


Keep your fingers crossed for a repeat tomorrow!

Wednesday, January 4, 2012

#5 - Things I wish I'd known about Down Syndrome 6 years ago

I CAN DO THIS!
Of all the fears I had in the early days, the biggest was definitely "what if I can't handle raising a special needs child".  I'm pretty sure every mother has this fear whether they get the diagnosis prenatally or post delivery.  One thing I learned about myself, having Cate in my life, is that I'm stronger the I think and when I'm not, I have an awesome support system to help me.  Add to that the fortunate fact that Cate did not come into this world packed with problems I had to solve right away.  I figured it all out as we both grew.  Our life is really not any different than any other family.  Both Ric & I work full time, the kids go to daycare and school, on weekends we do family stuff like the playgrounds or the zoo and twice year or so we go on vacations to the beach or to visit family. (Don't tell Cate but this year's vacation might just include a day or two at Disney!) We have a busy schedule with sports practices, dance classes, and doctor's appointments to juggle, but so does everyone else I know.  Cate still gets private therapy, but its been a part of our lives since she was 6 weeks old so we manage it just like anything else.  We've jumped a lot of hurtles in the last 6 years and once in a while I've stumbled.  But as with any kid, parents are going to make mistakes and the best you can do is correct them and do better next time.  If I would have know my life would be this "normal" back when Cate was born it would have saved me a lot of tears and worry.
So my biggest piece of advice to new moms of children with Down Syndrome is:
Build yourself a network because it takes a large village to raise a child with Down Syndrome -doctors, therapists, friend who can listen because they love you, and friends who can give advice because they've been there.   You don't have to do it all at once, you'll learn as time goes on that you can definitely do this!

#4 - Things I wish I'd known about Down Syndrome 6 years ago

Cate is a healthy child
It is funny that now I get a little pang when I hear "they had a healthy baby...".  Never thought about it before Cate but when someone says that they mean the baby doesn't have down syndrome or any other genetic issues in addition to the obvious general health items.  The first book I looked after after Cate was born descibed every conceivable medical issues she might have from ear infections, to heart defects, intestinal defects, dementia, increased risks of some cancers, on and on and on.  So in turn, my thought after the diagnosis was that Cate was not a healthy baby.  And because she had a complete AV Canal Heart Defect in some ways she was not a healthy baby but too look at her you couldn't tell.  Cate was adorably chubby, very pink and very happy as a baby and until she was 6 months old she never had an ear infection, cold, or fever so all in all she was pretty healthy.  Cate's heart defect of course was way more scary than her having Down Syndrome when she was an infant.  There is nothing like a stay in the NICU to put things in perspective - those babies there had much scarier problems then DS.  I worried about Cate's heart until months after her surgery.  But she never worried about it at all - her body kept right on growing and bounced back from open heart surgery after only a 6 day hospital stay.

Cate on the way to open heart surgery - 5/9/06


Daddy & Cate first nap at home post surgery - 5/15/06
Of course we have had our health issues with Cate but in reality they are not much more than most kids, and much less than many kids.  She has had some respiratory issues, including a couple bouts of pneumonia as a toddler due to the small sinus cavity & pulmonary passages common with DS, but she has out grown them now.  She has had 4 sets of ear tubes because of the tiny, crocked ear canals that tend to hold fluid and affect her hearing, but she has had maybe one true ear infection in her life.  Beyond that she doesn't have any problems that are longer lasting than your average cold and when she does get sick it barely keeps her down.   Now my "healthy" daughter, Lucy, on the other hand has had multiple ear infections, reflux, pneumonia, viral meningitis, croup twice, and food allergies that cause her to take daily meds and me to carry an epi-pen, and she is only two.  So when you look at it in perspective, I am lucky because I have two healthy daughters because the majority of the time we aren't running around to doctors and worrying about every cough.  That laundry list of things listed in that book - well most them apply to any child you just don't get a book telling you that when they are born.  Obviously some things are more likely for a child with DS but oddly enough there are some healthy issues that are almost unheard of in people with DS like tumors.  So just because your child has Down Synrome doesn't mean your child can't be healthy.

Cate giving a performance - Dec 2011

Tuesday, January 3, 2012

#3 - Things I wish I'd known about Down Syndrome 6 years ago

Kids with DS can attend daycare and school with their typical peers
I remember being in the hospital and saying "If I have to quit my job and sell our house, this child will never have to go to daycare".  I know I said it because I pictured a special needs daycare that was the stereotype of an institution in a bad movie.  My awesome husband instead of saying "don't be crazy or don't you think thats a little extreme" responded something to the effect of "we'll do whatever we have to to make her happy".  When my maternity leave ended I was lucky enough to go back to work part time and be able to have in home care for the 6 weeks prior to and a month after her heart surgery.  This was more for me then her because I so was afraid for her to get sick prior to the heart surgery.  During that time I looked at lot of daycares, one special needs specific but most not.  Even though the special needs care was very nice it just seemed wrong for her.  A few of the daycares said they "couldn't care for her needs" - which is interesting looking back because they had no idea at that point what those were.  Then I found a beautiful place that didn't seem to give a second thought to her having DS.  They had never had a child with DS before but were just so open and caring we decided to give them a try.  Cate went to that learning center daycare with her typical peers and no special considerations, except finding her a private place to do therapy until she was 4 years old.  We loved it there, the staff loved her, and her playmates loved her.  My hasty prediction was completely false - daycare was the perfect place for Cate.  She is competitive so she wanted to do what the other kids did so I think it drove her to push herself. 

Daycare 3 yrs

When she was 4 we started full time at the public special needs pre-K a half day, with another half day in an inclusive Head Start class.   She did great - it was amazing how much she learned in "real" school.

1st day at PreK
Now Cate is a full fledged Kindergartener at our neighborhood public school.  I won't say it was easy to get her into a typical classroom with minimal support but it was well worth it.  And now the teacher, the prinicpal and the rest of the school know she belongs there too.  Her teacher says she is doing great socially, she is learning to read (we already have about 25 sight words down pat!), and in many areas keeping up with her class.  She was one of the first ones to memorize her complete address, city, county, state, country & continent!  I'm not naive, I realize there is a very good chance she won't be able to maintain this indefinelty, at some point she'll probably move to a part time special needs class, part time inclusion.  And you know what, that is OK.  I don't really worry about it too much anymore because Cate is happy, she is making friends,  she is learning, and  she has dreams of taking care of animals when she grows up.  Education isn't a scary prospect anymore, we are proud of her, she is proud of herself and we learned that is so much more important than any label.

                                  
First Day of Kindergarten - August 2011