This is my Masterpiece

This is my Masterpiece

Wednesday, October 6, 2010

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!

Monday, October 4, 2010

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."

Friday, October 1, 2010

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.


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