Happy Birthday Gavin!

Dear Gavin,

It is hard to believe a decade has passed since I witnessed the miracle of your birth.  I had been in love with you for months, sight unseen, just a flutter of movements that seemed to settle when I talked to you.  When you arrived you were the gentlest spirit, sleeping through the night almost right away; loving to be cuddled and held… it was hard to put you down. 

One of your most endearing qualities was how you would reach up your tiny hand and rest it ever so gently on my cheek.  You wooed quite a few hearts with this move, you still do with an added, “I love you.”  We all fall for it. 

Over the years as you have hit each milestone, and celebrated birthdays I have said, “Oh, this is my favorite age,” only to have you move to the next step and be delighted a new.  Today, you are a friend, an encourager, an optimist, a companion, a caregiver, an advocate, a play mate, a helper, a student, a collector, an enthusiast, a reader, a team mate, a magician, a comedian, a greeter, and a believer… you are the brother everyone wants, the friend we want to deserve, the son I could never do enough to be worthy of and yet here you are.  I don’t know a person who loves more or tries harder; I don’t know a better person.  Having you in our lives has changed us.  It has changed our career paths, our priorities, our wants, our hopes and our dreams.  Our vision of the world has a lens… you, which we now look through.  Things that were once so important are just things now and moments that flew by unnoticed now hover like butterfly wings almost stopping time with how they awe us.  You have taught us to see, taste, smell, feel and touch the world in a whole new way… that has made us richer; made us better.  We are simpler because of you and at the same time we have so much more depth.

With you in our lives we have learned a new language… a way of communicating that transcends words.  You have shown us the value of speaking with expression, movement and sound.  The music that is your laughter could soothe even the deepest hurts and the way you read us and reach us in these moments defies explanation.  Your courage and tenacity to overcome obstacles…of adversity, discrimination, and ignorance… to give us grace over and over… you exemplify humanity at its finest.

It is easy for me to admit, there is nothing I would rather do than spend time with you.  Your company is easy and I never grow tired of your companionship.  Your expectations are plain… my presence is present enough. I miss you when we are apart and I appreciate that you tell me you miss me too.  That tender honesty and vulnerability are some of your noblest qualities. 

Thank you for giving us such an amazing gift… you.  Thank you for giving it every moment of every day for the last 10 years.  I love you for always and happy birthday!

Moving Mountains?

Of homework... gaak! Why is an inclusive education eight pages of homework when a typical education is two? This little learner has really put up with it two nights in a row -- for hours! Not 4 hours, but for two hours well I guess over two nights that is four hours. Look at me doing my math! Still way too long so we were jumping off the stairs during a well earned break. Mommy wanted to jump off of somewhere higher but there would still be homework and a mess to clean up so she thought wiser. He has gotten so smart about the "reward system." Here is how Gavin sees it: a problem on the page is an m&m, whole page is a prize, whole pile is a movie. Oh but I need some juice and maybe some popcorn. I am cold sitting here for two hours so maybe a blanket too, oh that feels nice. Now maybe you could scratch my back. Oh yeah I have to go to the bathroom. Here's how mom sees it: (one to one correlation = number of problems on page same as number of m&ms, sneak in a color ID by asking Gavin which color he's going to eat next, sneak in a subtraction equation = how many left, prize is a balloon (oral motor and fine motor) that we toss around and use on a break (OT gross motor) while identifying left and right sides and body parts. The movie is my ahhhhh time -- I've gotten smart about the "reward system" too!

Kickin' It Gavin Style

So we are always trying to tell people about the "sameness" of Down syndrome. How people with Down syndrome are people first and more like you than different. And that is true. Gavin likes corn dogs and chicken nuggets and McDonalds, and Disney and movies and reading... and, and... fill in the blanks for a nine-year-old boy.

However some of the differences are cool too. Take today's photo for instance. Gavin has a way of taking up the chair! He just won't sit "normal" and trust me this has driven a few teachers to the brink (or is it to drink?)! I love how he draws and lives outside the lines. We sleep upside down sometimes and eat popcorn for breakfast. We take a bath with the dog. We dress up in party clothes to go to Mimis, we dance on the lawn. Everyday he holds out his elbow so he can escort me to the car to go home. And every day he tells me I am beautiful, so pretty and a princess. All I've got to say is, Hooray for not being so stinking "normal."

Introducing Tallulah

I know you may be thinking what does a dog have to do with Down syndrome awareness? Well in a word... everything. I will tell you a story. You see, I went with my family to Monterey Bay Aquarium and there was a group of kids there, special kids, different kids, I don't know -- you pick the title, and I am drawn to kids like mine, so when I see them it is like long lost family; rediscovered, and I run across the room, waving my arms, appearing quite crazed to introduce myself, shake hands, talk, hug... effervesce my enthusiasm all over the place. So I go bounding over to these kids, and with these AmAzInG kids, acting incredible I might add, is a big dog --hello? we are in the aquarium! Well I hit my brakes and my brain does this little screech sound in my head and I am like -- WoW a Dog?! I stand there with my head sort of tilted, and I am sure I look lost or confused when this boy of about 12 (who I can see is wondering what my diagnosis is) says, "Hi, yeah, this is Sadie she is our therapy dog. You can pet her if you want." So I am petting the dog and calming down from my excitement of seeing my people and processing a dog walking around in the aquarium and the kids are watching me. One girl says, "She helps us to be calm, she is good at that." Obviously she is helping me at that moment, as I continue to pet her. Another says, "She helps keep us in our group and if one of us walks away from the others, she barks." A boy in a wheelchair says, "she gets things for me, like when I drop my pencil." The stories of how Sadie helped this group of kids went on for quite a while as I met each of the kids and their program leaders. I was one of many that learned more about a dog and some amazing kids than about sea life that day. She was the awareness dog.

And I knew I wanted a Sadie for Gavin. Someone to help him, calm him, herd him; be a companion for him and a trusted friend. Fast forward to a month ago and meet Tallulah. Now she is still a puppy and busy learning how just to be a good dog (not eating shoes, peeing outside, etc.) but she is so smart and in love with Gavin. Okay so maybe she thinks he tastes like a Milk-Bone dog biscuit, but she always wants to be near him. Sleeping beside him, under his chair while he does homework, stretched out watching movies next to him. They watch Marmaduke, BH Chihuahua and Marley & Me -- over and over.

Today they took a bath together -- his idea. Gavin made the bath, got in, washed, washed his own hair, and then called Lula and proceeded to give her a nice scrub. Therapy dog... hmm good thing. Good therapy. What does a dog have to do with Down syndrome awareness... in a word... everything.

Rainy Days and Sundays -- I love them!

We enjoyed a little sunshine this afternoon but we loved the rain this morning. Huge rainbow that arced up high in the sky and enough raindrops to get us wet but not deter our morning adventures in the garden. Sundays are my favorite days -- we don't make too many plans, we get caught up on things, and we always find time to be together. This Sunday was no different... well except we woke up -- upside down. Yeah, Lula had confiscated all the pillows at the head of the bed so we made a comfy nest of the blankets and snuggled after the alarm. Gavin sits up and says, "Breakfast, mommy... mmm coffee?" I am a sucker for coffee so I got up. Gavin reminded me, "Iron Man 2?"...yes later. "Aww, when?" After chores -- laundry, dishes, beds and stuff. "K... let's go, come on, get with it." He likes to hustle me along on the weekend, it is revenge for me hustling him along all week. I say, I bet the chickens are hungry. "Cat, mama and Lula." She had snuck off to the boys' room (they were already up so she commandeered their bed). We got sidetracked in the kitchen when we discovered Kris was drinking the coffee. "MAMA, Kris - Coffee??" Yeah, what's that about (somebody's turning 18 -- whatever?) Do you like coffee? Yeah, sometimes. (Any coffee drinkers out there think sometimes is an appropriate answer). So Gavin and I go make our mug of coffee, sort of look off at Kris, look at each other and shake our heads, poser. I say, hey Gav, toast or muffin. "Mmm, popcorn!" No Gav, breakfast... how bout pancakes? "Nah, popcorn." (by this time the bag is out of the cubbord, the chair is pushed up to the counter and he is placing the bag in the microwave. Okay, popcorn for breakfast. I love Sundays. As Gavin hands me the menu for the day. "Mama, draw popcorn!" Okay, what about lunch? "Chicken-noodle-soup." Okay do you want stars or ABCs? "Maaaaaa, chickennoodlesoupppppp." Hrrump, okay Gav, got it. "And orange chicken...." For lunch? "No Maaaa, dinner, k?" Okay. "Draw it." I am thinking what the.... does orange chicken look like using a blue dry-erase marker. I draw a Chinese food take-out container with two chopsticks. It's better than the bowl and spoon I drew for the soup. "Forgot noodles." Whaaaaat? "Noodles, maaaaa, put the noodles in right here!" I draw the noodles, okay? "K, juice." Draw juice? "No maaaaa, in my cup; three ice." Got it, three ice. "Lula's in the rain!" Really? "Look, maaaa!" Let's go get her. And out into the rain we went. I love rainy days and Sundays.

31 for 21 Begins - Welcome October - Down Syndrome Awareness Month!

I can hardly believe that it is time for 31 for 21 again! This year has just flown by, hasn't it? We continue to grow and thrive as a family... Gavin is 9 years old and his brothers, Nic and Kris are on the cusp of turning 18... amazing. Gavin continues to be in inclusive environments -- which he loves -- at school and in after school programs.

This year my goal has been to reach out and discover our amazing Down syndrome community. I am happy and proud to say I have over three hundred friends on Facebook, most of which have had their lives touched by someone with Down syndrome. It is a far cry from the 400 thousand people with Down syndrome but it's a start. I love all the photos and hearing their stories. I love the You Tube videos dedicated to Down syndrome and the information I can access and share about Down syndrome on Facebook. I love that we can be connected as a community this way.

This year also marked the first anniversary of Julia's passing (read about her in older posts) and we still miss her so much. Every where we go we see tinker fairies and imagine her laughter. We wish we could grow up with her but must be content with growing with her all around us. I am grateful that her parents remain in our lives and continue to teach me so much about strength, compassion and grace. I need this -- every day.

The recession and amendments to the Lanterman Act have brought much change to the services we are able to access. On one hand it has made our road a bit rougher but it has also revealed our true partners on this road to ability. I am in awe of their dedication working tirelessly, unfunded for people with disabilities. It soothes the shame I feel toward the agencies that continue to misappropriate funds, but enough about that.

During this month I will blog as often as possible in hopes of bringing a glimpse of our life -- the joys and struggles, laughter and tears, hopes and dreams -- in honor of Down syndrome Awareness month and Project 31 for 21.

Thank you for sharing our journey and I welcome your comments.

Suze


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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!

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.

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.

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.

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.

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."

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.

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.