Burning

For all the things my blog followers “know” about me… you do not know that I come from a long line of volunteers. People who step up and step out to help not only family and friends but neighbors and the community. Why don’t you know this? Because people who volunteer for things usually don’t do it for the pat on the back. They do it because it is a trait they were born with. In this case, it is a fire that burns inside them. 

Friends of mine recently lost their home to a catastrophic fire. That news has rocked me to my core, but what is disturbing is the amount of crap that has surrounded the fire fighters that responded. In my outrage, I do what I do best, I write.

It’s dark – middle of the night. The pager is blaring in the kitchen. My baby brother is crying in his crib. Lights go on, I hear my father storming through the house. My mother is trying to find his keys. They are both yelling. I hear the panic. My dad trying to put on his shoes  with my mom trying to help. As he runs out the door I hear her scream, “be careful”.  An enormous fire ripped through Princeton that night. My father was there.

My dad and I are out running errands. Pager goes off. I am 5 years old. We arrive at the scene and I see am old farm house with flames pouring out of the windows. My father grabs his gear out of the trunk and runs toward the house. A friend – fire fighter – tells me to sit in the back of the car and look out into the woods – away from the fire.

We are out as a family. Pager goes off. We drop my dad off and I can see the house is burning to the ground. My mom drives us home. I hear my dad on the radio. Giving direction, calling orders, setting up the scene. Then it goes quiet. ‘Where is daddy?” I ask. “Putting out the fire” my mother responds.

Fast forward 20 years. It’s the middle of the night again. This time the pager is in my bedroom because my husband is now a fire fighter. House is fully involved in Pennington. He leaves the house in less then 5 minutes. I call my father crying. ‘Daddy, it’s a real fire this time – a big one. He has never been in a real house fire.” (he has just graduated from the fire academy)  “He will be ok. He has trained for this, he knows what he is doing – and no one will let him get hurt.”

10 more years later. Phone rings. “your brother is in the trauma unit. He fell through a wall that collapsed, landed on his back in the basement.” “Is he ok?” “We don’t know.”

These men are my family. My father, husband, brother, uncle, cousin, friends. MY FAMILY. They leave Christmas dinner to respond to a turkey you burnt because you were not paying attention. They get up in the middle of the night to rescue you, your children and your dog.  They will cut you and your baby out of a crashed car. And they will cry silent tears for the ones they could not save.

Do not take lightly the work they have chosen to do. Because you know in your heart you probably could not do it yourself.

We don’t need your thanks. But maybe say a prayer for them.

Never forget… fire fighters run in when everyone else is running out. And their family wait at home praying for a safe return.

Sunshine on my shoulders…

This is what love looks like in my house.

Wally and I had grand plans for our 15th Anniversary. It seems though that life is sneaky… it hears our plans, laughs and changes things up for us. But, we ride along anyway. No matter getting mad.

So, instead of spending our anniversary in the spa at the Hershey Hotel, I sat in the yard, in my pajamas and watched Wally create me a gift I had seen on Pinterest (my new addiction) And this to me, was a showing of pure love.

As he cut and measured and sanded we both got more and more excited. This table was going to be cool… and it was 100% free! The pallet was in the back yard and the extra wood and even the stain was in the garage not being used.

He spent the entire day working on this project. Love.

I did not always know what love looked like because I was seeing it through my own eyes. I used my senses to understand love. What I heard, felt, saw… that determined my understanding of Wally’s involvement in our relationship. There were some dark times.

I read a book, which I strongly suggest… 5 Languages of Love. It teaches you how YOU feel and need to be loved and it also helps you identify how your spouse needs and gives love. And after that, everything changed. The things I need… time & affection – are not the same things Wally gives. He is in the business of service. And that is how he feels loved. I use to get so mad at him when he would be happy when I did the laundry and pissed when I didn’t. Like I was the maid. Well, I am not the maid and I do not want to be the maid. But I had to learn that when I do things FOR my husband he feels loved. He also like presents. Gifts are another way he demonstrates his feelings.

Is the table starting to make sense?

He spent the entire day making me a present. And I was able to fully and completely see it as a total act of love and devotion from a man I will never stop loving and will always be surprised by.

How does your spouse feel loved? It’s easy to figure out. Just see what he is trying to do for you. How do your kids need to be loved? This is a very important concept in my house. We teeter in a place where emotions can run wild… I need to be able to weed out the crap and show my kids real love. Christian needs time. He wants to tell you his ideas and what he has learned. He wants to laugh with you and just be with you. Wally goes camping with him as much as possible, I sit on his bed every night and talk to him about nothing and everything. Sometimes he is grumpy and just says good night, but I always open myself up to him. Our private time, away from his brother and comotion.

Carter needs affection from me and time from Wally. That kid is always snuggling with me. He curls up like a cat on my lap and relaxes. He feels safe there. With Wally – he needs “Guys Night” which means Friday night is archery and french fries. Carter thrives on the attention Wally gives him.

I think the most frustrating part of being in a relationship is when signals are crossed and two people love each other very much but they don’t feel it from each other. I have been there. Do I still need my time and affection from my husband? Yes. And I appreciate it more now when I get it. But I also am enjoying receiving love on his terms. It use to leave me in the dark. Now… it gives me a nice place to sit in the sun.

As for the laundry… I am working on it.

My Big Fat Family blog to #I wish I didn’t have Asperger’s: #AutismPositivity2012

This is a flash blog… read on and join in.

A couple of weeks ago, someone somewhere googled “I Wish I Didn’t Have Aspergers”.  The phrase popped up in a blogging dashboard and struck the blogger as being particularly sad.  She wished she could have answered.

We don’t know who it was.  We don’t know where he/she lives.  We have no idea if he/she found what he/she was looking for in that search.

We do know that search directed that person to a blog.  We do know the searcher clicked on it in an attempt to find what they needed.  And we do know enough about the challenges of autism to know that person is likely not alone in that sentiment.

We are asking every blogger in the autism community to write a message of positivity to #IWishIDidntHaveAspergers.  So that next time that individual (or another) types that sad statement into Google, he or she will find what they need – support, wisdom, and messages of hope from those who understand.

And – for those of you who do not blog but wish to join in – please post your positivity message to http://autismpositivity.wordpress.com

Please join with us on the last day of Autism Awareness/Acceptance Month – April 30th – in a flash blog of autism positivity.

Here are my words… the words of a mother.

I have a child with Aspergers and I love him to the moon and back.

Everyone has something that makes them stand out, unique. There is no such thing as “being like everyone else”. Some people wear glasses, some people are over weight, some people are very tall. And some people have Aspergers.

Don’t let it stop you. Don’t let your “thing” define you or hold you back in any way. God makes no mistakes and he knew what he was doing when he created you.

My child is funny, lovable, independent, emotional, loves baby animals, loves swim team and playing magic. He loves his brother and his friends. He likes going to the movies and shooting archery. He gets dirty when he goes outside, reads about castles and knights and loves to play with legos. He does not like to take a shower and would rather be camping then in school. He loves the beach. He cuddles with his grandparents and laughs with his cousins. He is a cub scout. He dreams of being an archeologist.

He is just like every other 9 year old boy I know. And he has aspergers.

You belong to this world. This world needs you.

Friends… please “like” the blog and/or post it to your facebook page to continue the FLASH. The goal is… that is any other person every searches with these terms again, they will find us and know they are not alone.

Peace

VIP Access

So, the first thing I learned when I woke up this morning was that a dear friend of mine has breast cancer.

I don’t want to do this again. But I will. As many times as I have to.

I have had many people come and go from my life that I call friends… when I lived in NY I was absorbed into Wally’s group of friends. I never really made any of my own, except girls at work. One night one of the more “intellectual” guys of the group said, “you know, statistically, one of us will die.” I know I thought… and looking around at the group I can’t imagine it being complete if even one was missing.

I was 7 when my dad’s best friend died. The day is burned in my memory. The phone rang and my Aunt blandly told me that Uncle Dennis had died. I sat on the couch to say a prayer… the Lord’s Prayer. At 7, I did not know what else to do. Funny how that is exactly what that prayer is for… my Aunt came in and told me to go outside and play. Not even realizing I was in pain.

Today I am in pain, again. I spent the day searching, looking for something. I am having feelings, and quite frankly, I don’t like feelings. I realized what I was doing when I kept looking at this muffin I am saving for tomorrow. Man, that would taste good right now. But, I am not hungry. However, if I eat, I FEEL full. And that is better then this other crap.

I started cleaning. I don’t get a big kick out of that so I tried some Easter candy. Nope. Not that either. All the while Wally was working on a project outside. I called my mom, she was not home. I even called my friend who is sick. Not home either. I keep searching.

I start trying to fix the broken back door. I search the basement for missing parts. Possible solutions to the problem. In the end, I get frustrated and Wally hands me a screw gun, I take down the door. I want to throw it across the yard.But lean it against the house, to wait for garbage day.

I sit on the porch and watch Wally work. This makes him mad.

I get a saw and go prune some really big branches off some of my bushes. Again, nothing.

Now, I start getting mad. Angry at the house for being almost 100 years old and needing so much attention. For everything around me looking like it’s dirty or broken or somehow needing my attention. I go look at what Wally is doing and I get frustrated because he has been working his ass off all day and the no matter how hard he works, we live in an old house that causes problems.

I grab the saw.

I head toward my butterfly bush. This bush is 10 years old and huge. Very overgrown and in need of a big trimming. (Insert jokes, I am keeping this one clean) I have been eyeing it for a few weeks but I know it will be a big project. Oh well. This bush is about to feel my wrath.

I hacked and pulled and broken and threw this bush all over the yard. I showed it no mercy. At one point Wally said, “What are you doing?” and I screamed, “Having a tantrum!”

I have said before that everyone is in a club. And unless you are part of the club, you cannot imagine what membership even means. My friends have gained access to a club that I cannot follow them into. I hope God hears my cries, even the ones I cannot verbalize. I hope He saw my hacking away at that bush as a prayer for mercy. A call for strength.

I don’t want to go here again, but I will.

Normal

My intent was to blog my life for the entire month of April so that people could get a real sense of what it is like living in a family with Autism. Well… two things happened. First – I had lofty thoughts. There is not enough time in the day to try and organize my brain long enough to spit out sentences that are in any sort of order and actually interesting. The second is that Aspergers seems to have taken a much-needed Spring Break. The past few weeks have been calm, chaos-free and peaceful.

Thank God for small miracles that happen every day… you just have to keep your eyes open to them.

But I live in the real world and I know that even though we get vacations, our issues are real and they are not going anywhere.

The day I got the diagnosis is burned in my memory as if it happened yesterday. If I had known, I would have brought Wally with me. But instead, I was alone and very much in shock. It was totally off my radar and I was completely unprepared.

That night I went to the book store and looked through cook books and advice books and everything they had trying to find a cure. If we went gluten free I was sure we could change things. Maybe set up a sensory room for CJ to decompress – that would change things… it went on and on and on. I was totally overwhelmed.

Finally, I settled into a big chair with the book The Art of Racing in the Rain. All the girls at the pool had been reading it and I love a pack-mentality! I started reading and started escaping. An hour later, I bought the book and drove home.

In the car I had a complete and total melt down. It hit me like a building… things are not going to change. This is real. There is not cure. There is no answer. Only maybes. I had no idea how to help my child… and worse, I did not know where to start. I pulled my car over and screamed and wailed at the top of my lungs. I have never cried so hard in my life. I cried until I was exhausted. And then, I went home.

I sat on the couch and read my new book until the very last word. It was 2 AM when I finally went to bed, but in the midst of a pool-side favorite, I found my answer.

La macchina va dove vanno gli occhi – the eyes go where the car goes.

That theme goes round and round in the book and it drew me in and gave me a starting point. Carter is my son. I love him to the depths of my soul. Nothing has changed.

If I choose to see Carter as “disabled” he will be. If I choose to see him as a thriving, funny, cuddle-bug, gets dirty in the yard, loves to camp with daddy, smart 9-year old… then that is what he will be. His future is no more certain then my own. I cannot know for sure that Christian will grow up to be anything special. But he has potential. Guess what, so does Carter.

But it starts with me. My view of him. My understanding of his limitations and his ability. I have to know when he is challenged and when he is being challenging. I have to learn all I can about his world and the way he views it so I can clear as many paths for him as possible.

Wally and I do not play this up. We ask for help when we need it, we demand the very best from our school system and we hold each other up when things get tough. But… we have a nine year old boy who just wants to be normal. So, we let him. And that is how we see him.

One day after a pretty bad tantrum, Carter was crying that he “just wants to be normal”. And I asked him, “what does that mean?” His reply was, “I don’t want aspergers.” My answer was, “Everyone has something. It is not different then wearing glasses.” He gets it, but he still wishes it was different.

For now, the house is quiet… he went to sleep like an angel tonight. Tomorrow is a new day, for better or worse, is yet to be determined. The only constant will be the love this family shares. The one thing we can count on. Through screaming and laughing, through IEP meetings and camping trips, through picky eating and boundless affection, I will live by one rule… La macchina va dove vanno gli occhi

Paradise

Just another day…

By the time I had gotten to work today I had begged, pleaded and ultimately bribed Carter to get out of bed and go to school, left a message with his teacher explaining why I had forgotten to hand his book report in and had a 20 minute conversation (while driving to work) with his school psychologist about how things are going. When I sat down at my desk I starred at the blank computer, unwilling to turn it on. I just wanted 5 minutes of quiet.

The day ended with a grumpy kid having dinner with my parents. Upon leaving Carter ran across the street, slipped on a pile of monkey balls, smacked up his hip and shredded his right elbow. Its a good thing he landed on the right elbow, because the left hand is currently in cast.

Just another day….

Aware

So, today is World Autism Awareness Day… the official kick-off to Autism Awareness Month – April.

The blogosphere is lit up with words, pictures, emotions, you name it, depicting Autism and “what it means to me”. In honor of my son and the struggles he encounters and the wins he chalks up… I am going to try and write every day… so that people can be aware.

Facebook friends, don’t fear. I am not going to force my blog down your throat every day. If you want to read, you know where to find me.

But for today, I want you to be aware.

Aware that autism is as different as the faces of the children it is a part of. One journey cannot define another. If you look up Autism on WebMD you will get a broad sense of what autism looks like in my family. But you wont get the whole picture. Mostly because clinic descriptions leave out the emotions – love, pain, joy, sadness. There is no room in the guides to explain why today is good and yesterday was bad. They can’t really explain, like with other diagnosis, characteristics differ from child to child.

Carter has Aspergers Syndrome, it is on the “spectrum” whatever that means. But there are somethings about Carter you need to be aware of…

He is very smart. He probably reads and comprehends books better then you do. He has knowledge that I dont remember him learning. He absorbs facts and information like a sponge. he makes connections between new things he learns and stored knowledge. He can see patterns and shapes in abstract ways. For the most part, he cannot write down his thoughts without one on one help.

He is very funny. Carter sees humor when others miss it. He loves to tease his brother and father. He is silly and playful. If you tease him, he will probably start to cry. He cannot internalize teasing and see it as humor. He can dish it, but he cannot take it.

Carter is the most affectionate, loving child. When he loves someone, it runs deep. And he seems to have a 6th sense about people. Before my brother was married, we would go to dinner and it always seemed that Carter would end up sitting next to my brother’s girlfriend. She is very good with children and she would take care of helping him order and cutting his food. His love for his now Aunt is so natural… she is a part of his world, people who get to live in his vast heart. We were at a wedding last spring and a picture was snapped of the two of them dancing. They both look so happy. Carter loves people to the bottom of his heart and back again. And more importantly, he wants them to know it.

He is unable to look someone in the eye that he is being introduced to for the first time.

I am also aware of a few things. Things that I need to keep working on and thinking about. Things that define me, as a person and mother. And things that ultimately define my family.

I am not equipped to raise this child. I pray everyday that I “get it right”. That I don’t lose my temper and that I see the situation in a clear light. I was not raised in the same manor that I have to run my own home. So I have no role models… other then to love my children with my last breath and give them roots to grow strong. But my parents were strict and had me on a leash. That does not work around here. I’ve tried. I can’t even raise brothers that live in the same house. The rules have to be different for the older… he sees the world in a different light.

Sometimes I feel like a circus clown, trying to make it all work.

I am aware that I do not have the time, money or energy to try every therapy on the planet… hoping one works. I go with what we have and hope for the best. I worry.

I am aware that Wally is holding us all up without shedding a tear or showing anger. Not only does he have a child with autism, he has a son with a sibling with autism and he has a wife who is the primary care giver of a child with autism. I am usually hanging on by an emotional thread, spilling my worst thoughts and feelings only to him. And still, he holds me up and tells me everything will be ok. I wonder, who is holding him up.

I am aware that no matter how much I blog, I will only dance around the truth that hides in my heart. Mostly, because I love Carter so much that I only see him as the smart, funny, loving nine year old that he is. And also because, no matter how many pretty words I use, unless your in the club, you will never really get it anyway.

I hope that through the month you will continue reading. I plan to tell you what I really think of autism, how my friends and family keep me sane, how my 12 year old keeps me looking forward and how I have handed this entire thing over to God.

Peace.

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