Fingerpainting Fun!

Who says that finger paints are only good for painting??? Thank goodness for non-toxic-washable finger paints!

I guess I should give Sam credit for putting something in his mouth... even if it is finger paint.  Baby steps in the right direction.

notice the fingerpaint all around his lips...LOL

Hello Spring!

Seriously... this is what we woke up to this fine Spring morn.  Words cannot express my joy! (please take note in the hint of sarcasm in my voice).  Patrick on the other hand is insane... dedicated perhaps but insane for sure... He woke up early, shoveled the driveway and headed down to Chicago the the annual Shamrock Shuffle 8k race.  He got an email warning him to expect "less than ideal conditions" for the race but with 6 inches of fresh snow, lake front effect wind chill and about sixty thousand other crazy runners headed into the city all vying for the only 10 available parking spots.... Good luck honey!  The boys and I are enjoying warm yummy french toast.  Hope your power bar isn't frozen. :)

 

Special Tomato

OK... here is the Special Tomato Soft Touch Mobile Tilt Wedge feeder seat (say that 5x fast).  We are getting this to replace Sam's Tumble Form Feeder Seat.  Same basic design, however the Special Tomato seat has smaller increments between sizes which allows us to get a better fit for Sam AND this seat can come off its wedge base and attach to any chair with special straps (can't do this with the tumble form seat).  Tumble Forms have been good to us in the past but for now Special Tomato offers better size options for Sam.

This little beauty is the MPS car seat from Special Tomato.  Sam is currently in a regular car seat but he is out growing it.  We tried him in a booster but he just slides out... it is clear that he still needs a 5 point harness to keep him safe in the car.  This special needs car seat can also be strapped onto any seat but come with the LATCH system and has been crash tested as a car seat.  AND... drum roll please... not only does it have a 5 year warranty and there is an extended seat option available to grow with Sam... but it holds kids up to 150lbs.... In a 5 point harness no less.  

****From the Adaptive Mall Website*****

   

Story Behind the Brand (SPECIAL TOMATO)

The Adaptivemall.com® was founded by Tim Bergeron and is a family owned and operated business. The Adaptivemall.com® is an Internet Catalog that not only offers quality items, but also provides you, the consumer, with empowering information.

Tim is also the founder and original designer of the Tumble Forms® product line. He has over 25 years of experience designing, building, and selling adaptive positioning equipment. The Adaptivemall.com® is pleased to introduce Tim’s latest product line, Special Tomato™. Tim has coupled his design experience with a new manufacturing process that provides soft durable, impermeable cushions for positioning children with special needs. Featured online here at the Adaptivemall.com® and in the Adaptivemall.com OFFLINE™ Catalog, is the first Special Tomato™ Product: the Multi-Positioning Seat.

Now you may be asking, “What’s so Special about Tomatoes”? Tim is pictured here with his youngest daughter, Carrie, a young adult with Down syndrome. Carrie’s story, “The Special Tomato”, summarizes what Tim believes that most parents feel about their child with special needs. “Every child is special in their own unique way. It’s a parent’s job to find the way to facilitate their child’s growth in a way that includes them equally within the family and community.” For children with physical disabilities, adaptive equipment can play an important role in helping them reach their highest functioning level.

The Special "Tomato" of my Family

My dad and mom had four children. The first three children were healthy and regular people. Then I came along, a baby with a difference, Down Syndrome. I had a hole in my heart, a rip in my heart valve, jaundice, a big tongue and a wobbly head. As I got older I also realized that I am a slow learner.

One day it was bothering me that I was having a hard time doing my school work. I told my dad about this problem and he shared a story about when he was out in his garden picking tomatoes the year I was born. Every year my dad grows a garden and loves to plant tomatoes. At harvest time there were Beefsteak tomatoes on a bush. When he saw a differently shaped tomato it got his attention. It had a large, smooth, bright red enlarged side that made my dad want to pick it up and study the bump because it was so unique and looked appetizing. At supper, that tomato was just as juicy as the others.

Even though I'm different like the tomato as a person with Down Syndrome, my family and friends love me even more and want to help me when I need it. My dad tells me that even though I have more difficulty learning than my brother and sisters, my lovable and outgoing personality and strong character make me just as special as they are. I guess I am the special "tomato" on our family's bush!

Carrie Bergeron, copyright 2001

**************************************

You may better recognize Carrie Bergeron as Carrie Bergeron-Desai, she married Sujeet Desai in 2006. Carrie is also a public speaker and as a young adult with Down syndrome she is a self-advocate and amazing young woman.  

Happy World Down Syndrome Day

The significance... for those who don't know... is that people with Down syndrome, also called Trisomy 21, have three copies of the 21st chromosome (the rest of us only have 2).  So March 21st, 3/21, is recognized around the world as World Down Syndrome Day.  Enjoy, and hug someone you love with Down syndrome.

Who likes yogurt???

SEAN LIKES YOGURT!!!

Wordless Wednesday

more on...The Poncho Project

Tomorrow, with the luck of the Irish on my side, I will making the first delivery for The Poncho Project to Lutheran General Hospital.  I didn't get as many done as I wanted to (I have 11 ponchos and 5 bags) but sometimes life just happens... and I ran out of cute fleece.  All I have is solid gray left... sort of blah... but Sean and I will be making a trip to the fabric store morning this week and then we will be up and running again.

So with a bunch of really small pieces left, I made these cute mini-messenger bags. Andrew, my reluctant model, said that I could post this picture as long as I didn't show his face... since the "purse" has flowers on it. However, he did put in his order for one that is all red...LOL. I am so excited and I hope the kids like them.

I am still working on "pattern kits" for a few people who expressed interest in making ponchos also to donate to their local children's hospital/ward (you know who you are and I promise I will get them to you soon). And another wonderful suggestion was to pre-cut some ponchos and give them un-knotted to the older kids and let them tie their own poncho... it would give them different to do. We all know that you can only count the ceiling tiles so many times. So I am keeping busy.

I packaged each poncho in a zip lock baggie and this little message on each.  It says  

 

"Hi Friend, My name is Sam and I spent lots of time in the hospital too... so my Mom made this especially for you ."

 And then I put a link to this blog on the bottom.  


 

BOGO

Just in time for Spring!  

Now through April 4th EVERYTHING at Uppercase Living 

(even accessories and custom designs) is 

buy one get one half off

 This is a great offer but it won't last long!  Uppercase Living offers decorative vinyl lettering and embellishments.  Check out my 

Uppercase Living Website.  

the babe knows what he likes

OK... Sean loves Craisins... that much is obvious.  I was unaware that he was able to open the bag on his own... serious err on my part.  So he dragged the bag off the table to a secure location and then proceeded to eat his sweet yummy spoils.  He was soooo quiet.  That should have tipped me off.  Once I discovered my cranberry stealing/eating monster I started picking up the pile and putting them back in the bag (5 second rule people).  Upon seeing this Sean jumped up, grabbed two fist fulls of cranberry goodness and ran to another part of the room, unloaded his stash and came back for more.  He was trying to grab handfulls away from me faster than I could clean them up... when it was clear that I was winning he didn't even bother to run off with them any more... he just started filling his cheeks.  I guess I should just be happy that his choice of a sweet treat was Craisins.

Spread the Word to End the Word

"on 31 March 2009 Special Olympics is calling for a national day of awareness for America to stop and think about their use of the R-word"

Spread the LOVE not the {hate}

Click HERE to learn more.

WISH update!!!

The excitement mounts as we all begin really looking ahead to Sam's Wish.  Yesterday we met with our WISH Granters.  They showered the boys with gifts and each gift could not have been more perfect for each boy.  They are an amazing couple and you could tell that they are doing something that they love.  While the boys played with their new treasures, we talked a little about Sam's Wish.  Choice #1 (of course) is a Disney package... basically park hopping and then a side trip to Sea World too.   Sam loves water, music, those little car rides that go round and round, fish (aquariums) ... so a trip to Disney would be amazing for him as well as the other boys. They are at the perfect age.  Although I still can't believe that I actually turned down 2 wishes before (seriously, what was I thinking) I am so very thankful that we are going though this process now rather than a few years ago.  I am telling you... Blessed and Lucky are we!  

We decided that we would rather drive than fly.  Not to mention all the stuff we would have to bring, but how would you like to be the person to sit in front of Sam for the several hour flight while he kicked the back of your seat... and the singing... who could ignore the singing.  And I don't even want to think about the multiple diaper changes and recycled air... it would be like flying through the sky in a really large diaper pail with a bunch of other people who really hate us...LOL.  So driving it is.  Now we won't know for a few weeks the exact date or particulars but I think we are shooting for early to mid May.  I will post more WISH notes later when we know more.  In the mean time Andrew is making a list of all the characters that he wants to see and that he thinks Sam will want to see, exactly how many dolphins he wants to feed, all the different species of Sharks he will be able to see, who actually lives in the castle (it is a toss up between Shrek & Fiona or some other princess) and exactly how many meals will be replaced with ice cream.  More later:)