This is my Masterpiece

This is my Masterpiece

Wednesday, October 29, 2008

Families Come In All Shapes and Sizes

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.

Sunday, October 26, 2008

They Grow Up Really Fast

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...

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!

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

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

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

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.

Saturday, October 25, 2008

Learn Everyday, Play Everyday

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.

Saturday, October 18, 2008

This Child

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

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.

Wednesday, October 15, 2008

Look No Hands!

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!

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

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!

Monday, October 13, 2008

Sorry We're Sick

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!

Saturday, October 11, 2008

Oops I Did It Again!

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!

Thursday, October 9, 2008

Together We Can

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.

Wednesday, October 8, 2008

Every Vote Counts

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.

Tuesday, October 7, 2008

Friends Come In All Shapes and Sizes

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.

Monday, October 6, 2008

Dreams Come True

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!)

Sunday, October 5, 2008

The Happiest Place on Earth

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.

Saturday, October 4, 2008

Vacation Begins

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.

Friday, October 3, 2008

Living Inclusively

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.

Thursday, October 2, 2008

Everyone can be a Superhero

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!

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!"

Wednesday, October 1, 2008

Adventures in the Eclectic

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

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!