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!!

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

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:

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!

#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

#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