Monday, April 30, 2012

Always Aware

Today is the last day of April. The blue lights will come out. Media coverage will slow down. But for those of who love someone with autism we are aware everyday. We never forget, not for a moment. We live a life we never imagined. We celebrate the small miracles of developmental milestones hit years late and cry in disappointment that some dreams are gone forever. We fight the school districts, insurance companies and government to get our loved ones what they need to have a fulfilling life. We fight to show the world that should not be pushed aside and hidden.  They teach compassion by their very existence. They show us the wonder of being able to have a different perspective on the ordinary. They have brought amazing people into our lives that we would have never otherwise met.

Our children are extraordinary and while they need compassion and understanding as do we, their parents, we don't need pity. While our children may not be leading the life we imagined for them, their lives have purpose, meaning and value. We can all learn so much from them if only you're willing to open your mind to their potential and possibilities. So as April gives way to May remain aware and compassionate because autism exists all year long, not just in April.

Friday, April 27, 2012

Fun With Only One (I Forgot How Easy Just One Is)

Sweet Baby Girl, my third and last, does not get much undivided attention. She naps in the afternoons after I shove DIVA out of the car without coming to a complete stop drop DIVA off at school. If she's lucky she'll get 15 minutes of me all to herself here and there. But the week of Spring Break, Big Daddy took Boy Wonder and DIVA off to California to visit their cousins, aunt and Achie and Papa. It was just me and the Littlest. We played whatever she wanted when she wanted. Oh Sweet Baby Girl watched Mike the Knight on repeat without someone (DIVA) screaming, "I need to watch some princesses RIGHT NOW!!!" We played in the backyard. We snuggled without sharing Mama's lap. We took walks holding hands. But our favorite day was our adventure at the zoo. Ready for some pictures?

I'm ready to get wild!!
We are waiting for the train.

Let's get on with the chugga chugga choo choo already!

Hi Mr. Sea Lion

I got your cheese Mama!!!

Oh Mr. Lion what big teeth you have!!

but Mr. Elephant's teeth are waaaay bigger!!!

There's paparazzi so I must wear my sunglasses while I lunch!!!

Thursday, April 5, 2012

You Be You

Two little girls.  Blonde haired, blue eyed, silly, giggly, fun, smart, hilarious, gorgeous girls. They like a lot of the same things. Mommy's Little Ponies aka My Little Ponies, baby dolls, their doll house, to swing high and fast, be Mommy's backseat drivers (too fast, faster, slow down, stop sign, go the other way). But they are different too. One calls me Mommy, the other calls me Mama. One loves all things girly. There are not enough hairbows aka headbands, jewelry, dresses or fancy shoes in the world. She loves to dance. Watch me twirl Mommy,  now I'll take a bow!! If it's got a Disney Princess on it or in it, it's for her. The other one is all about her sneakers so she can run fast, whether it's a dress or jeans the sneakers go on the little feet. Mama, catch the ball and now throw it to me.  Yay Me!!!! I catched it Mama. Did you see me, Mama? She'd rather watch Mike the Knight instead of Disney Princess movies.

I took my two delicious little girls to have their birthday photos taken the other day. One was all about the fancy shoes. The other one cried until I caved and let her but on her sparkly fast sneakers. I didn't make her take the sneakers off for the pictures. I wasn't trying to have my friend, Cher, capture some moment of false perfection. I wanted her to capture my girl's distinct personalities. There will be enough people in this world who try to change my girls and it won't be me. I want them to be unique in whatever way they choose. If that's sneakers or fancy shoes, well, you be you, baby girls, cause Mommy/Mama loves you for you.

Sunday, April 1, 2012

The Cycle of Grief and Acceptance

 Even hundredfold grief is divisible by love. 
 ~Terri Guillemets

It's a never ending cycle of grief and acceptance when you are raising a child with autism. We celebrate every hard earned skill, every spontaneous expression of love, spontaneous appropriate speech, in this house that'll get you a cookie. You accept that this is your child. You love them unconditionally but once in a while you visit Whatifville, the alternate universe that really never existed for you.

It sneaks up when you drop your NT preschooler off at school and you see all the NT kids out at recess running around and playing with their friends and you see the door to school open and watch your son's class come out each of them having their hand held by their one on one aide. Or when your 2 year old can say I sooooo mad Mama!!! Yet your 6 year old just sits and cries and you have no idea why. Or your 4 year old can write her name and your 6 year old can't. The grief takes you right to Whatifville. What if he didn't have autism? What if he didn't have to struggle so damn much? But you love him and those big brown eyes. That enticing smile. The delicious giggle. The way he says so haltingly in a voice barely above a whisper," I want up Mommy, please." So you pick up your 80 lb child who is too big and too old to be held but you pick him up and hold on tight because whatever makes him happy makes you happy. And you accept his unconditional love because you love him back unconditionally and in that moment when hold you first born the grief falls away and all that is left is pure love.

Editor's Note: April is Autism Awareness Month. Our house will be lit up blue. You can light yours up too. Blue light bulbs are available at your local Home Depot.