Adventures in the Eclectic

Happy Birthday Gavin!

2011-04-08T13:47:00.000-07:00

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?

2010-10-06T20:16:00.000-07:00

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

2010-10-04T18:34:00.000-07:00

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

2010-10-01T15:22:00.001-07:00

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!

2010-10-01T15:21:00.001-07:00

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!

2010-10-01T12:15:00.000-07:00

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!

2009-10-08T13:01:00.002-07:00

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

2009-10-08T13:01:00.001-07:00

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!

2009-10-08T13:00:00.002-07:00

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!

2009-10-08T13:00:00.001-07:00

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

2009-10-08T12:59:00.000-07:00

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

2009-10-01T19:04:00.000-07:00

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

2009-08-15T19:33:00.000-07:00

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

2009-08-13T03:27:00.000-07:00

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

2009-08-08T17:12:00.000-07:00

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

2009-08-08T17:10:00.001-07:00

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

NDSC Convention

2009-08-08T17:04:00.000-07:00

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

2009-07-23T21:05:00.001-07:00

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!

2009-07-02T06:42:00.000-07:00

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

2009-03-27T19:59:00.000-07:00

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.

Your Heart Will Stay

2009-03-05T19:38:00.000-08:00

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
*

Forever Love my Angel

2009-03-01T16:18:00.000-08:00

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

Then All The Reindeer Loved Him

2008-12-23T17:56:00.000-08:00

As they shouted out with GLEE... Come on, you know the words. Are you humming them in your head right now? That's it.

Sing for the season. Sing with joy. We are recipients of amazing gifts, and we are witness to miracles all around. Sing with celebration.

May your holiday be wonderful and may you be surrounded by those you love.

My Grown Up Christmas List

2008-12-22T20:08:00.001-08:00

As I look at these three amazing young men... I know I have the best gift I could ever wish for. I get to watch them grow up every day. I get their, "I love you's." It was only a moment ago in my mind's eye memory that their lives hung in the balance. I learned then that they are borrowed from God and I need to be grateful for every minute... and I am. Still, if I were to crawl up into the big warm lap of the man in red velvet I would ask for a few things...

Let my children know a world that has a moral code. Where car manufacturers, home lenders, and even politicians have to live up to their promises. Where hard work, honesty and integrity are virtues to attain. Let my children know that we are all connected and it is good to help one another. Let them know there are things more important than the bottom line... and those things aren't things. Let my children receive a quality education, one which prepares them not only for a higher education but for an independent life contributing in our community. Let my children have access to health care... where going to the doctor isn't a luxury beyond our grasp. Let my children know laughter. Let them know that there is greatness in giggling until you can't catch your breath. Let them know the joy of playing and sharing. That while there are serious issues to deal with silliness sometimes gives our mind the leap it needs to find a solution. Let my children know patience. In this world where we have instant pudding, microwave meals, up-to-the-minute communication and credit in 3 minutes... let them learn to wait. Old saying, "Good things come to those that wait." Let them not be in too much of a hurry to grow up. There is truth in only getting to be young once, despite what plastic surgery can do... we get one go around on the ride of life. Let my children know quiet and peaceful. This world is so noisy... so filled with sound-bites. We are constantly bombarded with chatter. Let my children know how to listen, especially when we disagree. Let them have the ability to extract the meaning in the message. Let my children know acceptance where they don't need to look, behave, or be a certain way to belong. Just being is enough. Let my children know the Lord, not the one of religion that divides people, judges people and punishes people... but the one and only Lord whose door is always open, prayers are always heard, and shoulders are broad enough to carry all our burdens... Let them be on a first name basis.

This Child of Mine

2008-12-03T18:03:00.000-08:00

It would be so easy to hold you so close to my heart. To keep you only for myself. To know that you are always safe. To have your big squishy hugs belong to just me. To know that your soft warm hand holds only mine. But a gift isn't a gift until you give it away. And you are a gift. So each day I send you off to share your gifts, but know that not a minute goes by that I don't hold you close to my heart.

You Are Incredible

2008-12-02T18:16:00.001-08:00

Not everyone will recognize your superhero powers. Like many supers you will go through your days disguised as an ordinary citizen, revealing your powers only when most needed and to other supers... To the janitor at school that cleans up after hundreds of kids and never complains about how kids leave the cafeteria or bathrooms, you will recognize him as a super; running up to him with an embrace and a high-5. You will recognize his powers of perseverance and humility. To the child in after school care who's parents are so busy trying to hang onto their home that they don't have the time or energy to give her... for her you will have super hugs and share a book. You will recognize her powers of patience and understanding. To the elderly lady whose hand you hold so gently and hair you pat admiringly. You will recognize her beauty and stop time if only for a minute. To the boy who is last in his class that the other kids tease... for him you will have a special hand shake (knuckles) as you recognize the leader he is to become. To the stranger needing a smile you will extend a warm hello, greet them with a handshake and learn their name because you recognize that we are all connected. To the mom you will always sing a song for her and dance just because, pick flowers to give her, wait patiently when she is late and tell her just that you missed her. You are Incredible.

He's Looking (Up) To You

2008-11-03T20:33:00.000-08:00

"Eyes that find the good in things, When good is not around.
Eyes that find the source of help, When help just can't be found.
Eyes full of compassion, seeing every pain.
Knowin' what you're going through, and feeling it the same."

(adapted from an Amy Grant song)

Will you be that someone that sees him? Someone who looks beyond the disability, the differences, the disadvantages... and really sees him? His light, his intuition, his strengths. His ability to give love and laughter; embracing life. Will you be that someone who stands beside him, encourages him; celebrates him? Because he's looking up to you.

Families Come In All Shapes and Sizes

2008-10-29T18:10:00.000-07:00

I got mail today about Prop 8 that REALLY makes me MAD. I feel like we are back in the 50s and 60s when we burned books and told children they couldn't come to their neighborhood school because they weren't white. This proposition is about DISCRIMINATION, period. Vote YES if you discriminate or NO if you don't. Pretty simple really. Not one person is going to stop being "gay" because we all vote "yes." I am sorry, if you see "gay" as a problem, this proposition does nothing to "fix" it. Children's books will still be written about gay families, families of divorce, families experiencing cancer, families of disability and multiracial families, etc. Not every family looks the same and it is important for all children to learn this. Families come in all shapes and sizes, and just as a child doesn't ask to be born disabled (or the sibling of someone who is, or the child of someone who is) neither does a child who's parent is gay. So when that sweet faced child comes on television and says "Did you think of me." Well perhaps no they didn't think of her in her nice nuclear family, but perhaps they thought of the child next door or the three in her class or the 50 in her school. Proposition 8 is a hate crime waiting to happen.

Marriage is a legal contract and the only qualifier should be two people of legal age. I would add "and of a sound mind" but I don't know too many people that really go into marriage that way, as it is the euphoria of love that gets us there in the first place. Marriage in "the church" is an entirely different discussion and it is up to that religious organization if they want to recognize the union and bless it or not. Again, this proposition will not stop churches from performing marriages.

The definition of a domestic partner should suffice on benefits and next of kin but for two people wishing to proclaim their love this does lack a certain umph. Go home and call your wife your domestic partner if you think it is the same. My guess is she'll tell you what you can partner with.

Anyway, I love my family and I do not feel we are missing anything. We are whole and we are complete, but if at some point in the future our family grows I want it to grow in love. If my children come to me and share that they have chosen a life partner I want to embrace their partner and see only the love of that union. I tell you now, I am not going to have one thought of, "what will the neighbors think."

Speaking of neighbors... did we not all grow up with Sesame Street? For 39 years we have been living with, learning from and loving Ernie and Bert. Are they brothers? Foster Kids? What...? Hello, they share a room. But no one ever FREAKED out about that, did they? We are not listening to commercials on the harm that allegedly was done if we thought for a moment of what this relationship between these two puppets might imply. And despite this possible relationship, Ernie and Bert have both made WONDERFUL teachers for our children.

I think I've vented enough, maybe... hopefully.

They Grow Up Really Fast

2008-10-26T22:23:00.001-07:00

One minute you are holding them in your arms so fresh from God and the next minute you are waving to them as they head off to school. It goes by so fast. I think that it is a misconception that you get to keep special needs children forever. They still grow up and they still go out on their own -- in their own way and their dependence on you changes.

Each age Gavin is I always think, now this is my favorite... that is until my next favorite age comes along. I am crazy about this boy. He is fun and funny, so loving, clever, witty... he just always keeps me smiling (and on my toes)! I love to look at photos of him remembering how precious he was at each age and stage but I also love the laughter and joy we have now.

Enjoy every minute.

Funny Face...

2008-10-26T22:07:00.001-07:00

In case you are keeping track (hi Nique) this is blog 24. This is Gavin's nee-ner face. I am not sure if that is spelled right and I am not sure nee-ner is even a word, but it goes with ha, ha and 'told you so. It also reminds me of a funny story. You see, Gavin likes to create words and condense phrases into one word. Pretty smart if you think about it. We do it all the time and call it acronyms and we have whole languages we use in texting, most professions, and sports. So my amazing and witty son gets the flu, and this was a bad one where he alternated laying on the cold bathroom floor with throwing up so hard over the toilet that I thought veins in his neck would burst. Anyway, now that I've sounded like House, back to the story. So after a bout of puking Gavin was hugging the toilet and resting his head on the edge of it and he looks up at me and he says, "Narfnish." (Barf and finish) Then he goes onto more puking and he looks up at me and says, "Nuffnish." (Enough and finish) And then he finally says, "Narfit." (I can only imagine this is barf and @#$% it!) This has become a secret family language.

One Week to Go!

2008-10-26T15:19:00.000-07:00

I know I am harping on this, but only one more week to go before we VOTE! I have never seen an election that has so many people so passionately on sides and others so conflicted at that same time. It is really important to read up on the issues. I am not here to suggest how anyone votes just to emphasize how important it is that you do vote. I read and repeat, "It will take strong leadership to build a world free of unnecessary barriers and discrimination for people with disabilities."

First Field Trip

2008-10-26T15:08:00.001-07:00

Friday, Gavin went on his first school field trip. His class went to the fire station. He really seemed to enjoy it. The fire fighters taught the class to crawl under the smoke to safety (using a sheet as smoke). The kids also learned to stop, drop and roll.

The visit to the fire station inspired great conversation at home about what we should do in an emergency. We talked about where we would meet if we had to leave our house in an emergency (a neighbor's). We talked about what we have in our house to help warn us of an emergency (lighted smoke alarms with batteries we replace every New Year's day) and that sometimes these alarms warn us that dinner is ready. :)

We also talked about other helpers we have all around us and that we should remember to thank them whenever we see them.

I See In You

2008-10-26T14:51:00.000-07:00

I see in you the whole universe. When I look into your eyes I see stars and sparkles and far away places. Things known and unknown that are so much bigger than you and me. In your eyes I see Heaven.

Did you know what makes your eyes so beautiful is actually a defect? The sparkles and stars in your eyes are called Brushfield spots and it is a birth defect of the connective tissue of the iris. Did you know that people buy contacts with Brushfield spots on them? Sometimes it is funny what we call perfection and what we call defective.

When I look at you I just see sparkles and stars. I see in you a person with so much more compassion than I have risen to. I see a simplicity and joy in you that is so admirable. A playfulness and laughter that is more harmonious than any piece of music I have ever heard. Your quick smile and unconditional love for everyone which you give so freely without it being earned or deserved. I see in you so many qualities that define humanity. I see in you a better world... gentler, kinder, peaceful. I see in you... the future.

I Hope You Dream

2008-10-26T14:42:00.000-07:00

I hope you dream of love and laughter. A world of acceptance and understanding. Of important work you can do and a family to come home to. I hope you dream you can do anything and be anyone. The limitations you face are only obstacles that you can get over, go around or plow through because you are so strong. I hope you dream of super hero capes, of space rockets and walking on the moon. In your dreams I hope you hear cheering and applause for all that you have accomplished and all that you will do. I hope your dreams are filled with celebrations, birthdays, holidays, graduations and weddings. And you see us all there, family, friends and colleagues celebrating with you and for you.

Learn Everyday, Play Everyday

2008-10-25T07:36:00.000-07:00

It is so important to remember we all learn everyday and we should all play everyday. It is easy especially in this fast paced world where we get so busy doing stuff, stuff, stuff... to take a moment to ponder what we do stuff for and take a laughter break.

For instance, since beginning this blog I have learned that committing to 31 days -- Everyday was perhaps a bit unrealistic in my expectations of my "creative" time, as there are days when, well you don't want to hear what I have to say, and yet other days I could write on and on. So what I ought to have committed to was 31 posts in the month of October because that I could do and you would actually want to read it. Notes for next year, right?

Since starting this blog I have also learned that those that comment surprised me... as did those that did not. People I thought would race to the blog are still getting around to it, those that I thought wouldn't be interested read faithfully. Who knew? I am humbled and thankful.

I am at a scrapbook event this weekend. When I return I will have photos to put up for both blogs, so check back in when you have some time to read (six posts) on Monday. Yup, I said that.

Speaking of playing... here's Mister-mister at the top of the slide. When I think about learning and playing, seeing Gavin at the top of this slide captures that. You see, when Gavin first started school this year he only wanted to play in the sandbox... which included throwing sand (not so good if you're his classmate). Anyway, he worked on that, we brought sand toys for him to share and play nice with, which really helped his confidence. Now he runs right by the sandbox heading straight for that "kid filled" jungle gym, the monkey bars and the slide. It's all about learning everyday and playing everyday.

This Child

2008-10-18T16:59:00.000-07:00

Dear New Parent,

Congratulations on becoming a parent of a child with Down syndrome.

You don't know it yet but you are to be envied. You have a child with something extra, something more and something special. This something extra is extra LOVE. One day you will think back to this moment and know how silly all your fears were, how misplaced your sorrow was and how what you though would be a burden has become your most precious gift.

Never will an outstretched hand be softer than this child's. Never will a smile be more precious than this child's. Never will an "I love you, mama," be more sincere than this child's.

Today you may wonder, "How am I going to do this?" Or "Why me?" and soon you will hear yourself saying, "I can't wait another minute to hold this child." And "Why me, why was I chosen to receive this amazing child... how did I get so lucky?" One day soon, you will no longer be able to imagine your life without this child... you will count the minutes until you see this child again.

Soon you will read stories about amazing people with Down syndrome. Artists, musicians, athletes, teachers, medical care providers, actors. You will read about people with Down syndrome working, living independently, even marrying. Their stories will inspire you to dream all your dreams for this child.

AmbassaBear for Special Needs Awareness

2008-10-18T16:15:00.001-07:00

Today Gavin was the AbassaBear for the Ripon Community and Youth Commission Health Fair. He wore a bear costume and handed out bear squeeze-stress toys. I was there also (duh) but I worked our booth, Special Needs Advocates For Understanding (intentionally acronymed SNAFU). I am with him in the first photo and I am in the second photo. Our SNAFU President is with Gavin in the last photo.

Working an event like this brings a lot of awareness to destigmatizing disability. Today everyone just saw a cute bear, handing out hugs and toys, with a quick smile and a strong high-5. So often we are afraid of what we don't know, so getting to know Gavin as a hugable bear helps people remember him warmly. So many people came up to me telling me how sweet he is, that he is adorable, a cutie, a doll. This connectivity makes it much easier to ask for inclusion in school, and activities in our community. Today my primary responsibility was to talk with people who are concerned their child or a child they care about "may" have a disability and to talk to people who need help navigating the maze of services available to children with disabilities. Sometimes it is just someone to talk to that has a similar experience, so they can ask the questions of what it is like for me. Are our experiences similar? If so then we feel better about the way we are feeling. We search for "normal" even as our awareness that we are no longer tethered to normal becomes so clear. Similar becomes our new normal. Fortunately, there is a bear-hug nearby.

Look No Hands!

2008-10-15T20:22:00.000-07:00

When I see children like Gavin riding horses, I just see children and I forget that they have disabilities. Funny thing is I think they forget for a little while too. Gavin does things on his horse that most people would be afraid to try and yet he is unafraid. It is a moment where comparisons are not drawn and limitations are not set. For a little while he is just a boy with his horse... riding with no hands.

Equestrian Therapy is AwEsOmE!

2008-10-15T20:13:00.000-07:00

Tonight we had equestrian therapy... also known as horse back riding. It is so awesome to watch Gavin work with this huge horse. He works on balance, trunk strength, coordination (kneeling, standing, turning around). He counts, uses weights, works on colors, works on right and left... crossing the midline. And he cares for the horse with grooming, saddling, and feeding. I just love to see his face when he is trotting... expectant full of a thrill and laughing.

Getting in the Spirit

2008-10-15T20:02:00.000-07:00

We are counting down the days and it is just about two more weeks until the biggest candy day of the year... Halloween!! We are starting to get excited around here!! We have our costume ready to go (Dash from Incredibles) and we have mailed off our past costumes to Ebay friends.

Today Gavin made a spider (pronounced PIDER because the front teeth are gone) head band at school and he was wearing it proudly when I picked him up. He is so cute about getting the eyes centered on his forehead just so. He loved pretending to spin a web by spinning around and making the legs fly! Nothing "itsy bitsy" about this guy!

Sorry We're Sick

2008-10-13T20:27:00.001-07:00

Sorry I haven't been able to post but my Gavin has been so sick. It started a week ago as a sniffle and a little bump on his chin. Over the week the rash spread over his whole face. I thought it might be 5th disease but he already had that, then we worried it could be rubella even though he's vaccinated. It turned out to be impetigo and his cold became bronchitis. Soooooo now we are on a boat-load of meds. including antibiotics :( for 10 days (2 down 8 to go). The blisters on his face are almost gone and the croupy cough and wheeze is better. He still has a yucky nose though. His appetite is better and so is his mood, but we had a quiet day today anyway. Saturday and Sunday night we didn't get much sleep, so cross your fingers for tonight!

Oops I Did It Again!

2008-10-11T07:55:00.001-07:00

Soooo Sorry to not have gotten this posted last night... WE LOST ANOTHER TOOTH! There is a nice open hanger for flies to fly through now. He was so cute about it because the minute the tooth came out he wanted to go brush his teeth for the tooth fairy. I told him she only likes them pearly white and leaves better treasures for kids that take care of their teeth. Oh and as a side note, in case you get this question... so we have our story straight... when asked what does the tooth fairy do with the teeth? She makes fairy dust from them so fairies can fly. Okay, we good with this story?

As an added bonus to loose teeth, we have our first fall cold. I love Gavin. I truly do but Gavin glazed with snot running at me full tilt, well this can only be described as a mother's love. What is it about boys that make them think their sleeve is an appropriate place to wipe snot? If you have an answer for this, then ditto on pillows, my couch and hand towels. I swear he will walk by a mine field of tissue boxes (not less than 6 on each floor of the house) to wipe his nose on fabric. Eww. And his all time favorite fabric... whatever I am wearing!

Together We Can

2008-10-09T21:22:00.001-07:00

When I was pregnant with Gavin I kept his diagnosis to myself. I didn't know how to share the information, I didn't know how to handle people's emotional responses... I didn't know my own emotions from minute to minute. I'll be honest, I struggled with my emotions. I needed to know I was having a baby, this baby with Down syndrome because I was prepared to be the best parent for this child... not because I felt it was my last chance to have a baby.

I remember my son asking me if the baby was going to have a cleft lip (because he and his twin have this) and I said to him, "I don't think so, but would that be okay?" He looked at me with the courage and wisdom of an eight year old and said, "Oh yeah, we can help him, that'll be no problem."

I cried in that moment. They were tears of pride and hope... and a little bit of relief because I knew that I wasn't just giving Gavin a mom; I was giving him two amazing brothers and an attitude of... together we can.

Every Vote Counts

2008-10-08T19:47:00.000-07:00

We are less than a month away from electing a new president who will have the opportunity to address some really tough domestic issues. Party lines aside, in the disability community we need a president ready to fully fund IDEA so children like Gavin have the opportunity to be educated, included and prepared for an independent future. We need a president who will reform health care so that every person regardless of disability is eligible for affordable health care. That health care needs to be comprehensive enough to assist an obese and aging population that may not be disabled but that is in the forefront of this health care crisis. We need a president that will address our economy... banking, housing and employment.

When my son was born a social worker handed me a brochure, "This baby needs you more." It is still true, just insert the words "to vote"... "This baby needs you (to vote) more." Please get informed about the candidates and issues... please, please make a difference with your vote.

Friends Come In All Shapes and Sizes

2008-10-07T15:00:00.000-07:00

When I talk about Down syndrome (and other disabilities) in a classroom I use people first language... which is a way of saying I talk about the person and treat the disability like an attribute (blue eyes, Down syndrome). I talk about how much Gavin likes the same things most kids his age like... Disney, animals, books, playing, friends, adventures, and so on. One thing that Gavin really loves is animals, big ones, small ones, furry ones, slithery ones, creepy crawly ones, and even animals that are bigger than he is. He doesn't seem to be afraid of any animals either (I am the opposite) so he will reach right out and pet (or pick up) anything. When we were at my mom's recently he reached into a container where my mom had beetles and suddenly he had (what looked like a million) beetles crawling up his arm. Every time we are there we have to look for him because he will sneak off to rearrange all the turtles (he likes them to have company), pick up a bearded dragon and carry it around or go hang out with a huge tortoise.

Dreams Come True

2008-10-06T16:20:00.001-07:00

On our trip to Disneyland Gavin was selected to be the recipient of "A Year Of A Million Dreams." When we arrived at our hotel there was a package waiting for us that had a card, lanyards and glossy photos signed by all the characters. Upon arriving at the park, Gavin was given special ears and met the Mayor of Disneyland. At California Park where we busily involved the whole store in creating every Potato Head Man (woman, person and creature) EVER... we were awarded with trading pins because we embodied the spirit of Disney. It was awesome.

Speaking of Dreams, one thing we did that I recommend to anyone going Disneyland is character meals. Even if you are going on your honeymoon (aka: without kids) go have a character meal. First of all the food was great. Buffet style, beautifully presented and tasty. Second, no lines to meet the characters because they come right up to our table, chat and sign autographs... even pose for photos! Lilo danced hula with Gavin for at least 20 minutes, Tigger ate cornflakes and Fairy Godmother cast a magical Happiness spell. (It was real and it worked!)

The Happiest Place on Earth

2008-10-05T21:32:00.000-07:00

I would be remiss to talk about Down syndrome without including Disneyland. Now you may think one has nothing to do with the other but they have EVERYTHING to do with one another. First of all, Gavin LOVES all things Disney. Yes, he knows the difference between Disney channel and say another cartoon channel and he always has. There is a secret T21 bond. I can't explain it or prove it but it is real. His whole face lights up when he sees Mickey Mouse and his Disney friends. So the culmination of loving all things Disney is to visit the D-Land... The best part is that if you have Down syndrome you (and your humble family) can get a Guest Services Pass. This IS the golden ticket. We went to Disneyland and we felt like celebrities, just practically royalty. It could not have been a better experience unless it was also free. It was the trip of a lifetime. If you have a family member with Down syndrome (or another disability) go to Disneyland and let them put the "Special" in special needs. I would go back in a second... in fact I am trying to talk my twins into going for their birthday next year (free on your birthday in 2009) but they sort of laughed at me and asked whose birthday? Okay I love all things Disney too. How can you not when a 6 foot chipmunk walks up to you and hugs you? (Then takes your hat and messes up your hair) I am a kid again, just thinking about it.

Vacation Begins

2008-10-04T18:07:00.000-07:00

So today is the first day of vacation. School photos came home yesterday and Mr-Mr looks AwEsOmE!! I LOVE the sparkle in his eyes and the confidence I see!

Last year was so terrible and people we thought we could trust turned out to be different then we thought. It unearthed our world and we tumbled through our days emotionally, psychologically and physically harmed.

This year has been very different. It has been wonderful so far and I have my boy back. He is learning and gaining confidence socially. So much healing has taken place. I'm actually going to miss school this week and I bet Gavin will even more.

Living Inclusively

2008-10-03T08:08:00.001-07:00

It is nice to belong. I think each one of us wants to feel like we are a part of something bigger, that we make a difference and we are not alone. The road to inclusion is still being paved over three decades after the first laws allowing children with disabilities to be educated in public schools. There are many obstacles that are challenging to overcome but in so doing we create a community and a society that is diverse and adaptable.

Gavin has made relationships with children and adults that he would never have had the opportunity to be exposed to in a more restrictive environment. I have made relationships with people and been afforded the opportunity to connect with my community in ways I never would have had if he was taking a bus to another town.

I am not going to say it is easy. I worry about how he will navigate this world. I worry about keeping him safe. I worry about drawing attention to ourselves because we are different. Then I think about every really great thing I have done in my life and I remember it wasn't easy, I didn't know how to navigate it, I didn't feel safe, and often it brought some attention my way. It was those things that helped me recognize the greatness.

Everyone can be a Superhero

2008-10-02T12:41:00.000-07:00

My thoughts on being a Superhero are this: Anyone can be one! We all possess in ourselves the ability to be more than we are... perhaps that is more patient, more generous, more complimentary. In each of us are the qualities to be someone's hero every day. In those acts of kindness... opening the door for a stranger, giving someone the right-of-way, saying "Hello, have a nice day." Here's one... SMILING! Did you ever take stock of your day and think, "No one smiled at me today?" Be that someone.

What is amazing about my Superhero Gavin is he does those things everyday. He goes up to people everywhere and shakes their hand, then he says, "Mommy, cmere!" and I have to shake hands with that someone. He has totally pried me out of my space bubble and forced me to greet the world with a smile and a handshake. But Gavin doesn't stop there. If he is having a snack, he shares. If he is reading a book he asks those nearby to sit with him and have a look. Sometimes I will get in my head (and there are some dark places there) and he will just know... he'll reach up and place the sweetest hand on my cheek, looking at me imploringly as if to say come back from there mommy. He rescues me so much from myself.

He loves all things Spiderman. I like to think it is because Spiderman was sort of a nobody without a nuclear family... his greatness yet to be discovered and that greatness comes when he is genetically changed. One of the things I love about Spiderman is when he shoots his web he makes the symbol (in American Sign Language) for I Love You.

Jack-o-lantern Boy!

2008-10-02T12:00:00.001-07:00

So Gavin just lost his front tooth! Perfect timing for Halloween, as he is now my Lil' Punkin Head!

The tooth has been wiggling for weeks -- really I was afraid he would swallow it when it fell out but he wasn't having any help from any of us. So my friend comes over with her son Jake and he says to Gavin, "Just twist it." Next thing we know the tooth is out and missing! We search everywhere and I fear it has gone to places I won't be searching to find it! But then, I see it sparkle in the oatmeal colored carpet and voi-la we have tooth! The tooth fairy took days to come visit because "we" (that would be me) kept forgetting to put the tooth under his pillow. Finally, she came through with a dollar, mini toothpaste, floss, a new toothbrush and sugarless gum. Good tooth fairy.

The other tooth is totally wiggling now so I think we may be singing, "All I want for Christmas is my two front teeth!"

Adventures in the Eclectic

2008-10-01T18:24:00.000-07:00

31 for 21 is a challenge to write every day in the month of October for Trisomy 21 (more commonly known as Down syndrome). October is National Down syndrome awareness month. Down syndrome is present in about 1 in every 800 births but the number is really much higher. It is believed that Down syndrome or the triplication of chromosome 21 ends in miscarriage about 75% of the time. Additionally, given the diagnosis of Down syndrome prenatally about 92% choose to terminate the pregnancy.

Having a son with Down syndrome has been a life changing and life affirming event. I will never take for granted the miracles my son brings to me every day nor will I forget to celebrate every accomplishment no matter what size (as measured by the world).

While I may be among the 8% that can say, I chose him... I know on a deeper level he chose me to radically reshape my life in the best way. I am blessed to be loved so much.

31 for 21

2008-10-01T17:49:00.000-07:00

Okay, I am a rookie at this. First of all I had created a blog a year ago and it was so hard for me that I never went back. So when I went to create a blog for 31 for 21 I couldn't because I already had one. So then I had to find it, update it, and try to link it. Two out of three isn't all bad, right?

So in case you are curious... why now? Well, Gavin is 7 now and I feel like now is an awesome time to sing to the world how wonderful he is. He has really come into his own... he is independent, he is helpful, he is so sweet, he is funny -- oh boy is he funny! I am enjoying him as a person, so much these days and it doesn't feel like work. It is like we have found our rhythm.

Anyway, there is this 31 for 21 challenge and I am letting it be the perspiration of my inspiration. I am going to work it and blog every day for the month of October... sometimes more than once a day if I get interrupted.

Check back and see what I am yammering about next!