Tuesday, June 14, 2011

Just Breathe

"Shhhhh, Crackle, shhhh, crackle"

I am so tired but I sit wide awake, listening to the sound of your breathing. I hate that you have asthma. I struggled with it throughout my childhood and hated the constant feeling of losing my breath. I know exactly how you feel. I prep the nebulizer so you can get some relief. I watch your throat retract and I worry. I feel my lungs tighten in sympathy and stress. I show you how to breathe deeply and I bang on your lungs. I'm struck by deja vu. I remember sitting in this spot before and I realize that 30 years ago, I was like Baby and my mom was sitting like me. Dark circles under her eyes, her hand on my back-not necessarily for comfort-but as a way to confirm that I was still breathing.

I fall asleep sitting up with my arm outstretched to you. I wake up at some ungodly hour. "Shhh. Shhh. Shhh." Still very shallow breathing but your color is good. I'll let you sleep a bit more before another treatment. I start to stand and I feel my neck and back ache, mostly because you were digging your feet into me.

I walk around the house in complete darkness. It's my nightly check. I stare down at each innocent face and feel the tension leave my shoulders. I crawl into bed and finally, fitfully sleep.

Sunday, June 12, 2011

The Chefs-in-training

"I'll help you. Press 3, press 3 again, press 0. Now push Start. Fantastic! You're cooking!!! Yay!!"

I love to cook and more often than not, my food doesn't suck. When I found out that I was having three daughters, I had visions of standing in the kitchen with my daughters surrounding me, cooking a magnificent feast for my husband. There would be memories of years worth of cookies and brownies, cakes and scrambled eggs, rice and plantains. I would show them everything I know and watch them get creative and become a better cook than me.

While the diagnosis rattled my cage, it didn't touch that dream. Because in my head, a girl's got to eat! Diagnosis or not; and they must know how to cook. So everyday, from the day they came home from the hospital, I lined them up in my kitchen to watch me create some concoction that more than likely Bugabuga would spit out. LOL. The kid was brutal on my ego.

I walked in front of them, before they could even raise their heads and explained how to peel a carrot and wash potatoes. I held up foods to their face so they could smell it. It became my most favorite part of the day.

As the days past, I noticed the enjoyment they seemed to have in the kitchen and when they began to walk, I let them sit on chairs rather than in high chairs. My nerves would fray because they never seemed to recognize the danger of the stove or danger in general. I began to sweat every time I cooked. I was always afraid that I would miss a baby running past me and try to grab a pot. I explained constantly that only mommy could touch the pots and pans.

They always listened.

I began teaching them to cook with plantains. I would fry them and then when it was time to smash them, I would hand the smasher to a baby after placing the plantain inside. The kids didn't have the strength needed to push down on the apparatus but I would place my finger and thumb out of sight and still control the smash while they used both hands to push with all their might. They were so proud when the plantain came out thin. They clapped their hands.

The diagnosis and lack of awareness caused me to doubt them. I backed off of bringing them into the kitchen with me. I missed them so much! They were in the next room and they wanted to be with me and I wanted them with me but the therapists said that cooking and understanding the situation may be difficult for them. I didn't want them to get hurt.

So many nights, I tossed and turned wondering how they were going to eat later in life. If they couldn't be trusted in the kitchen, would they be able to be self-reliant?

I relented on the kitchen boycott fairly quickly. As a concession to the professionals, I only brought one baby in at a time to help. We continued to smash plantains happily as I racked my brain on making this a safe environment.

"Bugabuga, stop touching the microwave."

"1, 2, 3, 4, 5, 6, 7, 8, 9, 0. Where's the 10 Mom?"

"The microwave doesn't have the number 10, it has a zero instead. Now don't touch it, please."

"Mom, come on, Mom. No 10! You silly Mom!

"Stop touching..."

The microwave started. My heart missed a beat. I turned it off but nothing was inside, so everything was fine and then it dawned on me, they can cook in the microwave!

We started cooking immediately. Popcorn, hot dogs, bacon, prepackaged pancakes, vegetables-anything and everything. I did hand over hand with them and walked them through the process. The number one rule was that no one cooks unless mommy is there. The kids were so excited to learn.

A few months into our daily microwave cooking lessons, the CEO asked for popcorn while several therapists were there. We went to the kitchen together and worked our magic. She made popcorn for everyone. She proudly handed her sisters, brother, dad and therapists a bowl each.

"It's so good of you to let them learn even though they are ...."

There was an awkward silence.

"Even though they are what?"

"Uhhhhh. Developmentally delayed."

"Of course, I'll teach them how to cook. Doesn't everyone?"

"No, actually. Many people don't let their special need kids learn. They just fall into the habit of doing everything for them."

I was horrified and I'm still horrified by the idea of not giving these kids the opportunity to grow and learn to take care of themselves.

"Your kids have an amazing shot of having a normal life with slight adjustments to help them with their disability."

You bet your ass they do. Nothing will stand in their way, even themselves. I firmly believe that only an individual can place limitations on themselves-no one else can do it unless you allow them to do it to you. So therefore, my children's potential is limitless because we know that they are great and will live great lives.

Saturday, June 11, 2011

On this road with you.

I think being open about the diagnosis in our life will bring awareness and hopefully, acceptance. But it goes against every self preservation instinct that I feel. People cannot help themselves, once they know, you are treated differently.

I hear about people doing the walks to raise awareness and money for research. People assume that I will be front and center raising the most, but I'm not.

I haven't figured out where my road is leading yet. I want to help others deal with the diagnosis. Finding a cure, while a beautiful idea, is not foremost in my mind. I love my kids. I love their idiosyncrasies. I hate the tantrums. I hate the routine. I hate the constant sound of crying because of the limitation in expressing emotion but I love my children and I want them to enjoy their life. I want them to learn to live easily and well. I want the security that when I die, my kids will be okay. I want to help parents deal with the fact that we may never have that security. I want them to have every normal experience that they can, even if I have to create it myself. Looking for a dancing school that will accept an Autistic, no problem-I'll make one. I may be overweight but I'll learn how to dance like a ballerina so that I can show you and make you happy.

I want to walk into a store with you and not get weird looks when you have to jump over the threshold and then proceed to touch every item that we pass. I want to teach people how to speak to you so that everyone can have meaningful interaction. I want to have the confidence that you will respond to your name so that I can let go of your hand.

I want to sleep well. I want you to have sweet dreams instead night terrors. I want you to grow up never realizing that when things get really hard and mommy moves to stand behind you to calm you down with a big bear hug, it's because she doesn't want you to see her crying too.

I want to laugh with the same abandon as you. I want to mirror the innocence in your eyes. I want your world to always be as safe as it is today.

I want that kind of life for myself and for all parents of Autistics. That's my goal, even though I haven't figured out how I will make that happen. I will make it happen as I travel down this road with you.

Monday, June 6, 2011

Sia- Breathe Me

My favorite song of the moment.

Sia-Breathe Me

Help, I have done it again
I have been here many times before
Hurt myself again today
And, the worst part is there's no-one else to blame

Be my friend
Hold me, wrap me up
Unfold me
I am small
I'm needy
Warm me up
And breathe me

Ouch I have lost myself again
Lost myself and I am nowhere to be found,
Yeah I think that I might break
I've lost myself again and I feel unsafe

Be my friend
Hold me, wrap me up
Unfold me
I am small
I'm needy
Warm me up
And breathe me

Be my friend
Hold me, wrap me up
Unfold me
I am small
I'm needy
Warm me up
And breathe me

Sunday, June 5, 2011

Because I'm awesome, that's why!

I have a friend that has a very large heart, hidden by a bravado that most believe but if you take a moment to really listen...

She's exceptional.

She'll tell you to go fuck yourself if you're an asshole, she'll cry because you're crying and she'll make an off color joke that is both irreverent and perfection in it's timing. And she keeps kicking my ass at Words with Friends. I'm waiting for the moment that I get the perfect combination of words to spell out bitch because I know she will love it.

I didn't met this woman in my day to day life, I met her online. I met most of my tight knit circle online. When I went on bedrest, my real life friends were too busy living to take a moment so the friendships took a hit and when the diagnosis started rolling in, it was the KO punch. Who wants to hang out with/talk to that person that is so sad?

No one.

No one except my mommy friends from IVillage and my Weight Watcher buddies. I don't overly emote on my friends' greatness often but it is there. I don't think that I would have chosen two of my closest friends in fact. They are a bit loud and opinionated-actually, just like me. It's not often that more than one alpha female can co-exist happily but in some ways I was able to get past our every day personas and get to the core of what makes them great and how knowing them makes me better.

I see one of them excelling at college and owning her writing style and I'm so glad for her. I see another raising children of her heart and body without a discernible difference because there is no difference to her and I'm struck by her propensity to love.

I see both grabbing their life and living it to the fullest and fulfilling their dreams and goals and I'm inspired to do the same. I see them laughingly say, "Because I'm awesome, that's why!" and while they may wonder if that is really true, I know that they are right and I am so lucky that I "met" them. I live every day working to get to the point that I can say the same thing.

Saturday, June 4, 2011

It's time to PARTY!

Baby was invited to a birthday party today. I went shopping with her earlier in the day to pick something out for the little girl in her class that I do not know. I asked Baby to tell me what this kid likes but she wasn't very helpful, distracted by all the Tinkerbell possibilities.

We settled on a Disney Princess Aurora Birthday Tea Party toy. Baby was very excited to go to this party. I'm recovering from a fever and bug so I was not overwhelmed with excitement but we were going. Without a doubt, an opportunity to socialize will never be turned down.

McDonald's knows how to host a party. There was a huge playroom, chicken nuggets and French Fries were plentiful. Baby tossed off her shoes minutes after walking in and began playing.

It was the parents' time to socialize. It was my time to sweat. I never know if the parents' in Baby's class know that she is on the spectrum. She's in an integrated class, half are typical functioning and half have IEPs. Can they tell? I think she presents herself very well and it is only as you spend an extended period of time with her that you can see her markers. Is a two hour party enough time for them to know or can I live the life for a little while of a mom with a typical kid?

I spoke to the other parents that I know. Their daughter is on the spectrum, her markers are harder but she is a sweetie and the parents remind me of my husband and myself-very down to Earth, looking for friends that understand but afraid of rejection yet every party we gravitate to each other. As I'm talking to them, I hear the birthday girl's mom talking to one of her established cronies.

"I had to invite one IEP kid or the school would have frowned down upon it. We have to be ACCEPTING."

My expression didn't change and I kept laughing and smiling but I was immediately conflicted. They didn't know that Baby was an IEP kid. YES!! The other part of me, the part that is a mother to moderate Autistics wanted to burst into to tears. It's that type of parent that makes me have night terrors that my children will have lonely lives. I wanted to scream, "You FUCKING IDIOT, Autism is Not contagious!" But I was silent, and I know exactly why. I wanted that moment. I wanted to be a normal, regular mom as badly as I want my kids to be accepted as regular kids.

We left the party and Baby fell asleep in the car on the way home. I was struck by how ill at ease I felt with typical parents. I thought back to the times I have met parents at Bugabuga and the CEO's school and their kindness. I think of the hesitant smiles of the parents and the gentle pushes to get the children to play. The understanding that we may not be able to talk but we may have to play together to model the behavior for our little ones. The look in their eyes that says, "I don't know you but are you ready to play Peek-A-Boo?"

I saw a picture of me from the party and where everyone else was relaxed and smiling. I looked pensive and worried. The photographer caught me waiting for something to go wrong but hoping that it wouldn't, hoping...

I left the party, knowing that I needed to have another party for no other reason than socialization for the CEO and Bugabuga. They need these experiences, just like Baby, even if I have to sponsor every single one.

Wednesday, June 1, 2011

It's morning already?

I'm not a morning person. There are no excuses, I was just born loving the afternoon and the night. My creative juices flow; my brain functions best at night.

Every morning, it's the same routine. The alarm goes off, I slam my hand down to turn it off. I elbow my husband "by mistake" and close my eyes again. Ten minutes later the damn thing goes off again. Where are my glasses? I grope around and as soon as my hand touches them, I feel them fall toward the floor. Shit! Now I'm blind and I have to make lunch and pick out the kids' clothes. I walk to the kitchen and squint, looking around. I walk up to the refrigerator that is wide open and close the door. Handsome must be awake. I stumble to the bathroom and leave the door ajar, a concession to my claustrophobia. My heart beats wildly in my throat when I open the door to find four babies silently standing there with their cups. I'm always surprised at how silently they get into the same position every morning. I smile and say good morning.

Bugabuga: "Morning Mom!" I wonder where this chipper child came from.

CEO: "Ah. You wake. ah, da, ah, ah, ah, ah, morning." Another smile.

Baby: "Mommy, it's morning already? Ah,okay." Not a morning person, my soul sister.

Handsome: "It's morning, mommy? It's morning?" Bewilderment and a big yawn.

I meander into the living room. I have the clothes lined up in order of their birth. I ask Bugabuga to come get ready. Her bus doesn't arrive for over an hour but we need every minute.

"Do you want me to help you get dressed?"

"No, I do it!"

I turn to Baby. "Okay, let's get ready."

We quickly work together and she is dressed. I turn to Bugabuga, "Do you want me to help you?"

"No, I do it!"

I turn to CEO. "Your turn!"

We quickly get her ready.

"Bugabuga, can I help you?"

"No, I do it!"

"Handsome's turn!" He giggles and takes off. We run in circles for 3 minutes until I catch him. He's laughing so hard, that he falls to the floor. I quickly undress him and reach for the clean diaper. He twists and kicks and starts running through the house naked. "Come back here!" Laughter is echoing off the walls. I let him run and pretend that I can't catch him.

"Bugabuga, ready?"

"No, I do it. Mommy, I can do it."

"I know honey. You're doing great. Keep trying."

"Handsome, get back here!" Everyone is laughing as we hear him run down the hallway and scream when he runs into his father. "Why are you naked?

He runs to me and throws himself on the floor, ready to be changed. Two minutes later, he's ready.

"Bugabuga, I have to help you. The bus is coming."

"I can do it."

"I know you can. Let me try to help you a little. Can you pull your arm back and I'll move your shirt a bit? Great! Let's do the other side. Wonderful! Okay, now your pants."

"I can do it."

"I know you can. You are doing a great job! We have to hurry."

"I do it!"

I quickly clean her up and start to put her pull-up on. She starts kicking. "No, I do it!" She starts crying and screaming. I'm sweating, the bus is coming in 5 minutes.

"No, Mommy is going to do it."

I get her legs in the pants. I grab the diaper and waste band together and yank up. In one motion, she's dressed. She's smacking me across the face. My husband thrusts his IPhone at her to distract. She begins playing the Strawberry Shortcake app. She's totally focused on the game and slowly stops her tantrum. We quickly put her backpack on, she grabs her pocketbook and runs to the stairs. My husband is leading CEO down the stairs and Bugabuga follows.

She turns and smiles, "Bye Mommy. Love you. Have a good day!"

"Have a great day guys. Love you!"