Autism is just an "also" not the "the" of our life. I want to share the endless hope that fills our life. There are good days and bad days but when you really break it down a small puzzle piece at a time, you'll see that the big picture is beautiful and full of laughter.
Sunday, August 21, 2011
Mommy's Miracles: Don't do that crying thing.
Mommy's Miracles: Don't do that crying thing.: It's actually pretty comical to see me deal with someone crying. I don't like it, I feel helpless. I don't have words to make it better. ...
Don't do that crying thing.
It's actually pretty comical to see me deal with someone crying. I don't like it, I feel helpless. I don't have words to make it better. Instead, I have one liners.
It's terrible. I have the face of someone that wants to hear every one's problems. I meet random strangers and I get their life story. And here's the thing, it's like people can tell that I will not stop them, that I will listen and take their pain with them. But honestly, please shut up!
I hear all these different stories about life gone wrong and never fail, I have at least one person a week tear up when talking to me. I feel like there is a neon sign above my head, "Talk here. You'll feel better, she'll feel worse but never mind that."
It's always been this way and I have a feeling that it will always be this way.
I deal with it and make jokes to avoid getting swallowed in all the pain that everyone deals with. And then I started to think about it, why does every one's life seem to suck?
That's the thing, it doesn't suck. It's about the perspective of your life. I think that's why I'm so content in my life without the help of happy pills. I hear people say, "It can't get much worse." and I want to spill coffee on them. It would be worse. LOL.
Maybe it's that I have walked through a road with so many possible potholes that I've realized that rough road is not a bad thing really because you're still on a road. And if even you fall off of the path that you expected to travel, you can just be taking the scenic route of life.
I'm always positive, not because I'm unrealistic but because I'm optimistic. I'm a daredevil waiting for the next loop in the roller coaster-because if you are afraid of the loops, you'll miss out on all the views.
Maybe that's why I listen to every stranger and friend because I know that I can always find the positive and make things seem a little more bearable.
When all else fails, I say, "I understand. I have four children with Autism." Most people will become quiet, they cannot imagine how difficult it is-how much it must suck. It gives them a different perspective when looking at their life.
They are wrong-of course. My kids are wonderful and amazing and our days are filled with laughter. I may be seen as a strong woman DEALING with this life but I'm not, I'm just a wife and a mother living-it's what makes my life so grand.
It's terrible. I have the face of someone that wants to hear every one's problems. I meet random strangers and I get their life story. And here's the thing, it's like people can tell that I will not stop them, that I will listen and take their pain with them. But honestly, please shut up!
I hear all these different stories about life gone wrong and never fail, I have at least one person a week tear up when talking to me. I feel like there is a neon sign above my head, "Talk here. You'll feel better, she'll feel worse but never mind that."
It's always been this way and I have a feeling that it will always be this way.
I deal with it and make jokes to avoid getting swallowed in all the pain that everyone deals with. And then I started to think about it, why does every one's life seem to suck?
That's the thing, it doesn't suck. It's about the perspective of your life. I think that's why I'm so content in my life without the help of happy pills. I hear people say, "It can't get much worse." and I want to spill coffee on them. It would be worse. LOL.
Maybe it's that I have walked through a road with so many possible potholes that I've realized that rough road is not a bad thing really because you're still on a road. And if even you fall off of the path that you expected to travel, you can just be taking the scenic route of life.
I'm always positive, not because I'm unrealistic but because I'm optimistic. I'm a daredevil waiting for the next loop in the roller coaster-because if you are afraid of the loops, you'll miss out on all the views.
Maybe that's why I listen to every stranger and friend because I know that I can always find the positive and make things seem a little more bearable.
When all else fails, I say, "I understand. I have four children with Autism." Most people will become quiet, they cannot imagine how difficult it is-how much it must suck. It gives them a different perspective when looking at their life.
They are wrong-of course. My kids are wonderful and amazing and our days are filled with laughter. I may be seen as a strong woman DEALING with this life but I'm not, I'm just a wife and a mother living-it's what makes my life so grand.
Sunday, August 14, 2011
Great Expectations
I'm a sap. A complete and utter sap.
I wanted children for a long time-wait, let me clarify, I didn't just want children-I wanted to have my husband's children. I had dreams of frills and trucks and all the good times in between. I had expectations...
***************
"We're having a party!"
"Are you a party girl?" I asked Bugabuga.
"Oh yes, Mom. I'm a party ANIMAL!"
"You go girl! Par-TAY!"
"Dad, I'm a party girl too!" Baby chimes in, my husband looks shaken. It's begun.
"Me too! I'm a party princess!" The CEO jumps in.
"Par-TAY! Par-TAY!" Handsome is jumping around dancing.
My husband and I stand shoulder to shoulder (alright, shoulder to abdomen but you get the idea) watching the kids throw a party and do pretend play. When one falters, another picks it up. They are laughing, dancing and just having a great time. I see my little guy fitting in and hamming it up. This is what I wanted. This is what I dreamed of all those years ago.
And now as they sleep, I close my eyes and see their little smiles and hear their giggles. I tear up.
They are everything beyond my wildest dreams.
I wanted children for a long time-wait, let me clarify, I didn't just want children-I wanted to have my husband's children. I had dreams of frills and trucks and all the good times in between. I had expectations...
***************
"We're having a party!"
"Are you a party girl?" I asked Bugabuga.
"Oh yes, Mom. I'm a party ANIMAL!"
"You go girl! Par-TAY!"
"Dad, I'm a party girl too!" Baby chimes in, my husband looks shaken. It's begun.
"Me too! I'm a party princess!" The CEO jumps in.
"Par-TAY! Par-TAY!" Handsome is jumping around dancing.
My husband and I stand shoulder to shoulder (alright, shoulder to abdomen but you get the idea) watching the kids throw a party and do pretend play. When one falters, another picks it up. They are laughing, dancing and just having a great time. I see my little guy fitting in and hamming it up. This is what I wanted. This is what I dreamed of all those years ago.
And now as they sleep, I close my eyes and see their little smiles and hear their giggles. I tear up.
They are everything beyond my wildest dreams.
Saturday, August 13, 2011
Mommy's Miracles: An encounter on the train
Mommy's Miracles: An encounter on the train: "'You're so inspiring to me. I know what you have to deal with and I see you come in smiling every morning with a positive attitude. That's ..."
An encounter on the train
"You're so inspiring to me. I know what you have to deal with and I see you come in smiling every morning with a positive attitude. That's what gets me up in the morning, if you can do it, so can I."
I'm humbled. I don't think I'm anything special. I'm blessed with my life-with my family. I see people dealing with some serious issues every day-illness, depression, unemployment. I may not know these people but you can see the signs of struggle in some one's resting expression.
I will never forget seeing a woman on the train that had huge circles under her eyes, she was falling asleep on her feet. She was startled awake when she started to lose her grip on the railing and I saw a glimpse of agony in those eyes. Not agony of physical pain, but agony of the mind and heart. An older woman reached out and said, "Whatever it is, it will resolve itself. Trust in God."
In true NY fashion, the woman jerked away and turned her back. Her mask was firmly back in place but regardless, the other woman and I saw it. I said a little pray for her and I think of her often. I wonder if she is happier now and I wonder if anyone on the train ever sees that bleakness in my eyes, catches me in the moment when I doze on the train and have to fully wake up. It takes me a minute before I feel my mask slip back on and I constantly wonder what I look like before it settles in because I have noticed several people do double-takes when they make eye contact in that moment.
My positive attitude is part of my mask, I need it just as much as I need people to believe it. It is a rare day that I cannot ignore the difficulties that I deal with daily.
"Mommy, NOOOOOO! I do it myself!!!!!! NOOOOOOOOOO!!!!!!!!! AAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!
NNNNNNNNNNNNOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!
Please, please, please. I do it myself!"
It's the begging that shatters me. I watch the transitions rock Bugabuga's world and I try to help her through it but there are days that I'm not enough, my husband's not enough-even Angry Birds can't bring her out of it.
"PLEASE, MOMMY! DADDY, PLEASE! AHAHAHAH! Please, please. I do it myself."
It's not that we don't want her to be independent, we do but some days, we have no idea what she is talking about. We have no idea what set her off so we don't know how to make it better.
It's those days that I cry in the shower and walk in to work with my head down. I know the strangers on the train feel the anguish in me and I wonder if some realize that I am trying to block out the memory of screams by blaring my IPOD at the highest volume. It's not that I want to be inconsiderate-I even bought headphones that angle the sounds into my ear rather than have the sound bleed out-but I cannot deal with that absolute heart-breaking screams that randomly pop into my mind.
"Don't touch me!" I'm jarred out of my deep thoughts and fears about Bugabuga by a random woman looking at me with hatred. In all of the years of travelling on the NYC subway system, I have never had an issue with another passenger.
"What?"
"Touch me again and I'll hit you."
"What are talking about? The train is crowded, I'm not trying to touch you."
The train jerks forward and the woman's flowing garb touches my bag. The sounds of Bugabuga's screams are still in my mind and I'm so angry that I couldn't figure out where we went wrong. There had to be a reason, but what if there wasn't one, what if she's regressing?
I'm shoved against another person, I turn to apologize to the random stranger and then turn back around to the woman that hates me and it's my turn to release my venom.
"What the FUCK is wrong with you? Touch me again, and I'll take you down."
"You are the devil."
I look in disbelief as she raises her hand to strike me across the face and I decide in that instant to let her see my soul. I look into her eyes with every raging emotion that I have that I need to put into a box before I step out of my bed. I know that there is a frighteningly blank look in my eyes sometimes and I feel it. I see the absolute terror in her eyes as I grab her hand and twist it so hard that she doubled over in pain.
I let go and she moves quickly away from me.
Every day I use the gentlest voice, the softest touch, the most cajoling words I can to have a harmonious house- to avoid the rough transitions that can quickly overwhelm the joy that we have at just existing. There are days that I will get punched in the face, kicked in the ankles, scratched and I just give a hug in return. I pray in every breath for strength and I'm so calm because I'm constantly talking to God.
But on the train, with a stranger, I will not be pushed. I'm not an inspiration. I'm just another person dealing with life. Most days are good and some days I'm the devil.
Sunday, August 7, 2011
Mommy's Miracles: Explaining Autism to a sibling.
Mommy's Miracles: Explaining Autism to a sibling.: "'Mommy, I don't like when she screams.' I feel myself flinch. I don't want to have this conversation. They are 3 1/2 years old. They are..."
Explaining Autism to a sibling.
"Mommy, I don't like when she screams."
I feel myself flinch. I don't want to have this conversation. They are 3 1/2 years old. They are too young to realize the differences.
"Mommy, uuuuggggghhhhhh! Why does she do 'GRRRRRR'?"
My heart twists as I hear Baby's speech impediment. She doesn't realize that speaking in a whisper is inappropriate but she realizes that the CEO's grunting is not quite right.
I don't know what to say so I ignore it. "That's just her Baby, that's just who she is."
Two weeks later...
"Mommy, I don't like CEO. She's weird."
My cheeks and ears flush. This can't happen. I know the world may not be kind of some of the markers but our home is a safe haven.
"Sweetie, everyone is different. Some people cry a lot like Bugabuga. Some people scream. Some people don't speak and some people sing all the time. We love everyone because we're all God's babies and God doesn't make mistakes, okay?"
"Okay, Mom."
Three weeks later...
"AAAAAAAAAHHHHHHHHHH!" I hear Handsome cry in the next room.
"MOMMY! CEO is hurting Handsome! I'm scared of CEO."
I break-up a squabble over plastic horses.
"I mad!" CEO yells. I am so proud of her! She's expressing emotions. This is such a huge milestone. We've been working on this for years already. I control my expression but I want to dance with joy.
I turn to Baby. "Listen!" No eye contact, I make her look at me. "Listen, look at me! CEO has a hard time sometimes. Sometimes things are too loud or there are too many colors. Sometimes, she wants to be alone. You like to get quiet sometimes, right? Well, she likes to scream. It makes her feel better. No matter what, we can be mad, sad, angry or happy-we ALWAYS, ALWAYS love our family."
"Baby, CEO has Autism. So do you, Bugabuga and Handsome. Your brother and sisters are your best friends, always. We are always a team, no matter what, we love each other no matter what. If you think we're weird, we can be and that's okay. Everyone can be weird. Weird makes things fun, okay. Mommy and Daddy love everyone NO MATTER WHAT. Tell me what you think."
"Mommy and Daddy love me no matter what. I love my sisters and brother no matter what. We do weird sometimes and that's fun no matter what."
"That sounds about right, Baby Girl. No matter what."
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