This is my Masterpiece

This is my Masterpiece

Thursday, October 8, 2009

Welcome Fall!

Being back at school is in full swing, the leaves are changing and we are starting to need a sweatshirt in the morning. Oatmeal to start the day and soup on the stove in the evening! Love this time of year... and we just bought our first pumpkin. Still have to get out the fall decorations and hem all the long pants but this weekend is looking good for that. Until then you will find us cuddling on the couch with a soft blanket watching our new favorite movie, "Monsters vs. Aliens."

Ears, Sign Language and Communicating

Hearing problems and Down syndrome seem to go hand-and-hand but that doesn't mean you can't get your point across! There are amazing tools out there to help... including regular audiological assessments. Gavin uses hundreds of signs, lots of picture exchange and a sound field system to amplify the teacher. What ever it takes give people with Down syndrome the power to hear and be heard!

After School Programs are Amazing!

One place we have found continued acceptance and inclusion is in our afterschool program, Stone Soup. Here Gavin has made so many friends from several of our local elementary schools and built lasting relationships with adults in our community. At Stone Soup, Gavin is given academic support, social opportunities, and some exposure to recreation from visiting community activities like karate and dance. He loves movie Fridays with ice cream and dance party days!

People Who Lift Us Up!

Behind every amazing person with Down syndrome is a support system. One of the key people in our support system has been the fabulous and amazing Miss Amanda! She rescued us from the terrible situation we were in and put the smile back on Gavin's face. She is a wonderful part of our extended family that we have been blessed to meet because of Gavin having Down syndrome. With the delighful Miss Amanda also came her whole family which we feel lucky enough to call our own!

Shines More Than The Rest

The curious thing about Down syndrome is when you don't know someone with it, you can be afraid but once you get to know someone with Down syndrome you begin a love affair that can last a lifetime. People with Down syndrome are incredibly loyal and enthusiastic friends. Suddenly, you find yourself smiling all the time!

Thursday, October 1, 2009

Being Like You

Today I will celebrate you and be more like you. I will embrace your enthusiasm and recognize music is reason enough to dance... I will not worry who is watching. I will embrace friends with a hug, a handshake, a high-five and honor that we are all connected. I will face the challenges in the obstacle course of life with eagerness for the adventure and when I "wipe-out," I will laugh while I get up and get back in the game. With each new opportunity I will smile and see the "WoW," and eagerly run to you to share. I will tuck a treasure in my bag as I head out into the world each day, so when I am discouraged or tired or lonely I will have something to hold in my hand that helps me be brave. When I like something I will say so, when someone does a good job I will say so, and when I have done a good job I will say so. I will laugh, I will play, I will watch movies, hum theme songs and read good books. I will be loyal to friends, and favorites, and even my own ideas no matter what anyone says. When I am wrong I will say sorry, sign sorry, act sorry and make amends until you believe I am sorry. I will believe in superheros and angels, Santa and wishing on a star. I will talk to myself if I want to. I will tell you how beautiful you are every day, touch your face with amazement and always insist on a hug and a kiss when we say goodbye and hello.

Saturday, August 15, 2009

Building Julia's All-Access Playground

How do we build an All-Access Playground in memory of Julia Hatcher? It starts with a vision of Julia and Gavin playing together on the sidewalk while all the other kids were playing on the playground: on slides, in tubes, up on platforms, climbing stairs, swinging from bars, steering wheels, looking through a bubble window. The other kids trudged through the bark to get to the playground -- this was a place Julia's walker wouldn't go -- so she and Gavin stayed behind. Then it takes a vision of Julia and Gavin playing in a bounce house where there were no barriers to over come (pictured several blogs ago). And pictures of Julia on her swing set her Grandpa Doumas modified. And pictures of Gavin overcoming obstacles to play (pictured here).

Then it takes asking the question, "What if we took down all the barriers?" What if we created a place where everyone could play? Ages from 2 to 92 could walk or roll or even crawl across safe surfacing to play with ground level equipment, roll up a ramp and transfer onto a slide. Spin a rainmaker that was both pleasing to the eyes and the ears, practice the signed alphabet and feel the braile alphabet, giggle at their image in a wavy mirror, sit and rest for a while at a quite tree-shaded, bench box while enjoying the scent of lavendar and rosemary.

Then it takes a lot of people saying yes... Mr. Mistlin, the City Council, Julia's amazing family and then a whole lot more saying yes I support this with their time and their money. It was amazing to see the support today for the yard sale... especially in this economy that so many people bought something and then said "keep the change; it's for a good cause." Thank you for believeing in this vision and for loving Julia so much. Let's "keep the change" and build a playground without barriers that everyone can access.

Thursday, August 13, 2009

Save Services for Thousands of Kids

A week ago we were one of the thousands of families that got a letter letting us know the State of California is going to be canceling our services. To do this, lawmakers, without public input, amended a law on July 28th so they could take away services from people with developmental disabilities in a letter 5 days later. Further, they redefined the services as social and recreational rather than therapeutic which made these services seem frivolous. At the same time they delivered this blow to all the families served, not one pink slip was handed out... yeah you read that right... though none of the families will receive services they are still defined as clients so that money continues to provide jobs. Where but in government can you serve zero customers but still be guaranteed a job?

Gavin works with weights building strength, increases vestibular balance, proprioception, crossing the mid line, prepositional concepts, right and left, colors, alphabet, numbers, following directions, building confidence and self esteem while increasing physical and cognitive function. In the first photo he is working with weights to increase core strength. In the second photo he is counting. In the third photo he is doing a move called "baseball" and following this move he stands on the horse. Now I don't know about you but I don't know too many people that stand on a horse.

The handsome men you see with Gavin are his big brothers who have been volunteering every week for about six years.

Last night a reporter asked me what is so special about Equestrian Therapy... how is it different from other activities. My answer came without hesitation... for an hour a week Gavin doesn't have a disability.

Please help families like ours keep these services.

Saturday, August 8, 2009

Meeting Friends at NDSC Convention of all ages

Out on the exhibition show floor we got to meet so many people. There was a huge play area, toys, bikes, swings, educational materials, books, art, shirts and so much information. It was great to fill our bags with goodies and share stories.

Dancing at NDSC

There is my handsome man shakin' it on the dance floor! Gotta love this cutie!

NDSC Convention

NDSC Convention was amazing. It was so fun to finally get all dressed up and go to the banquet. The room was packed with people just like us. That night we dined with over 900 friends. There are some tremendously talented people working to create a better tomorrow for people with DS and many of them were honored with awards. Then after super food and lots of applause everyone went jiggy on the dance floor. My little man and his two older brothers looked so handome -- really I could not be prouder of the trio! It was a fine evening.

Thursday, July 23, 2009

Tough Day

We are home now and resting. Our day started about 5 a.m. (who am I kidding... I didn't sleep!) and surgery began at 7:30 a.m. You know you are becoming too familiar with the routine when you put on scrubs and escort your baby into the surgical suite. Still I respect this team so much for honoring my son's comfort and giving me the peace of staying with him until he is gently sleeping. Then the waiting begins. That's the hardest part, watching the clock and every time the doors swing open you look for a familiar face to bring news. Will it be successful, have we bought some time, have we waited too long? News finally comes. A lot of stuff in his ears and a totally collapsed eardrum; it is sucked in and immobile. The surgeon spends 20 minutes just freeing up the eardrum. The t-tubes don't fit, so we have to try the grommet tubes again and the surgeon hopes the eardrum will reanimate but he is guarded and he begins talking about the next surgery where he will attempt to drill the bone. I shut my eyes, block out the information, because today I can't hear it. Today I want to be optimistic and I want to go hug my little boy. In recovery he is having a hard time waking up and he is in tachycardia. His heart is racing up above 148... he keeps scrunching his face but he looks good and his sats are good. I talk to him and his heart slows a little, then he scrunches and it is back up again. This goes on for a while; I'm not sure how long and then there is a smile and a..."love you."

Thursday, July 2, 2009

Way To Go Dads!

I wanted to pay tribute to those special dads that go to IEPs and doctors appointments, give up their favorite foods to participate in a GF/CF diet, learn sign language, redesign the house to accommodate, and travel different roads. You will recognize them as the ones that have no vacation time because they've used it all for appointments. You will see them reading package ingredients in grocery stores. You will see anytime they are in a picture they are with their kids... hamming it up. When these dads speak of their child it is not of what their child can't do... it is with deep reverence for what they can do. It takes a special kind of manhood to embrace the challenges of parenting a child with special needs... a selflessness, unique courage and a quiet bravery. I applaud you.

Friday, March 27, 2009

Let's Build a Better World

I have heard, "It takes a village..." I have also heard "there are... half a million people with Down syndrome in the United States alone, or just about one on every other street corner."(Michael Berube). That's roughly the population of Washington D.C. and based on those numbers I would say we can build a better World. I know Gavin is busy building a better World. Every day he builds friendships, he changes attitudes and he spreads joy. Navigating "Normalville," does require wearing a hard hat(and sometimes the use of a hammer). When I see this smile I know no matter how long the construction takes it is worth the effort.

Thursday, March 5, 2009

Your Heart Will Stay

Every now and then
We find a special friend
Who never lets us down
Who understands it all
Reaches out each time you fall
You're the best friend that I've found
I know you can't stay
A part of you will never ever go away
Your heart will stay

* I'll make a wish for you
And hope it will come true
That life would just be kind
To such a gentle mind
If you lose your way
Think back on yesterday
Remember me this way
Remember me this way
Hmm……….. this way

I don't need eyes to see
The love you bring to me
No matter where I go
And I know that you'll be there
Forever more apart of time, you're everywhere
I'll always care

And I'll be right behind your shoulder watching you
I'll be standing by your side and all you do
And I won't ever leave
As long as you believe
You just believe

Sunday, March 1, 2009

Forever Love my Angel

Dear Sweet Julia,

From the moment I saw you, I knew you were the one. Wherever you were that is where I wanted to be, and the line was long behind me. Everything we did together was the best. Just hanging out eating Cheetos and pretzels, watching a movie. Partying on birthdays -- hamming it up for the camera. Bouncing in the bounce house. Blowing bubbles. Chalking the sidewalk. Sharing toys and sharing stories. Our stories, that no one else knew. As if your beauty wasn't enough, you're smile and laugh were like a magnet. For you I would do anything... and be happy doing nothing. Just laying around, snuggling and holding hands.

I can't imagine trick-or-treating without you. As a fairy, or a princess... no one could sparkle more. I can't imagine prom without you. I can't imagine anything without you.

My mom joked that your family better like us, because we were going to be together for a long, long time. She knew the way I doted on you that I was a goner. My heart was spoken for and I could only hope you felt the same way.

I guess God felt I needed an angel more than a girlfriend, because that's what you are now. I sure will miss my girlfriend... every minute of everyday. Someday, when I see you again, I hope you'll save a dance for me.

I love you Julia.
February 26, 2002 - February 27, 2009