That’s Right.

boybeachWell, Autism Awareness month is coming to a close… did you light it up blue? I bought and wore an awareness t-shirt throughout the month. Did I make a difference? You can’t tell by looking in my windows. Autism was very loud in my house this month, almost like it wanted ME to be aware. Like it was telling me not to get comfortable because it can throw a curve ball at me any time it wants. And boy it did.

We have been using baseball metaphors around here lately and they seem to make the most sense when nothing else really does. For those who follow my life on facebook, you know that my husband was transferred to Upstate New York and has only been coming home on weekends. I have been holding down the fort and all that entails for the last 18 months. Finally, we have word that Wally is coming home at the end of May or beginning of June – we are in the 9th inning. The problem is… bases are loaded, there are two outs and it’s a 3-2 count. Seeing as I have no relief pitcher, I am exhausted. I only have one more pitch to throw. Either way it’s almost over. I am trying to pull myself together to make the throw… but autism is in the background screaming as loud as it can and frankly, I am off my game.

The last three weeks have been nothing like I have seen in the past two years. Something about this school year and the mix of early puberty are not getting along. Something is setting off all the alarms and it feels like all the work we have done… we have to do again. My older one started going through puberty in 6th grade also… it seems so unfair. Their bodies are still childlike but their emotions start going mad. I remember the older one hugged me a lot… almost as if to say, mommy I still need you. Those hugs have started now with the younger one. But I can feel them mean a little more – Mommy… please don’t stop loving me; mommy please don’t leave me now when I need you so badly; mommy please don’t be mad at me because I can’t control this and it scares the crap out of me.  I, in turn hug my husband and think… it scares the crap out of me too.

So the therapist says, “What happened that was right this week?” and I immediately get it. We are focusing on the bad again, trying to fix whatever is broken in whatever way we can. Remembering that not EVERY second has been challenging has flown out the window. I start listing things – he read an entire book in a day, he built legos (I start to struggle) and then it flows… I started to ramble off great, new adventures he has had, like learning to use a post hole digger (ok, maybe not adventures, but that kid wanted to help put up the new fence, so we handed him a tool and put him to work) And he helped and was helpful. He has been funny and wise about things I have no understanding of. He has used his imagination to entertain himself through five days of spring break with no playmates. He really is a great kid – other people tell me all the time – I just need to keep my eyes focused on the good and let the bad fall where it will.

Everyone struggles with something, I lay no claim to having to the most difficult child or circumstance. I just need to remember what is “right”. It is so easy to see the bad and become engulfed in it to the point of insanity. But the “right” is right in front of me as well. Asking to be seen, urging to be heard and hugging its way into my heart.

So we are in the 9th inning of this current chapter of our lives. And we will win this game even if we come out a bit bruised. I am nervous for what the future holds for my baby. But I am equally excited to see what will be right.

Peace.

Magic

DO I STILL HAVE WHAT IT TAKES?

So I read this great blog about Mommy Magic the other day and it got me thinking; now that my kids are older, do I still have what it takes to create the magic that followed them through their younger years?

The magic thatPunggol-Group-Hug filled the house with red balloons one Valentine’s Day. Or that time we saw Peter Pan at Disney and my oldest stood in awe as I gasped with delight at seeing our favorite character. Or the night my youngest, the one with Aspergers, slowly drank the caffeine-filled soda I forced on him and for the first time was able to tell me why he was having a tantrum.

Do I still instinctively know what a 14 year old man-boy needs when he has shut me and everyone else in the world out. Can I calm a tantrum, after almost 7 years of dealing with them. Am I still a Mommy?

Today is world Autism Day and even though I have not written in a while, I always try to write for today… as a way to create solidarity within the mommy world by letting you know, you are not alone. They say if you meet one child with autism you have met one child with autism. Every story is so very different, but laced into the differences are similarities, pains, joys and daily life that we can all connect with.

Truth is, my story has become less about a child with autism and more about a family with autism. I look around at the four of us (and sometimes even the dogs) and I realize we are all living with autism. We are all dealing with the highs and lows, wondering what each day will bring. We all know the triggers and signs of bumpy roads ahead. And we all love each other unconditionally through it all.

Where I struggle is keeping individual identities. Even for myself.  And that is where I question my “magic” abilities. Sometimes, the bad parts of autism can wrap you up and swallow you whole. Whether it’s me talking to a teacher for the third time in a week, my husband trying to balance work and home life so as to keep the ship upright, or the oldest who, when tantrums erupt, puts on his headphones and cancels out the noise that he cannot deal with.

Some times that bad is so loud it distracts from the good. And that is why I know I need to tap into my dormant magic and bring joy to days that sometimes just suck. And I also have to remember that magic is not simply a prolonged distraction… more video games, more tv, more internet. Magic is showing love in ways that the boys and my husband can feel, see and touch. It’s less about having the laundry done and more about looking into my heart and really giving to each of the boys in my life. And when I do that, things like balloons on Valentine’s Day happen.

I once told my oldest that living with people is hard. And, quite frankly, it is. No mistake about it. There are four different people living under this roof and sometimes we move as a unit and sometimes we are on our own. Sometimes we need space and other times, a group hug. Each person needs time alone with each other, time with the family and time by themselves. It’s a lot to manage and no calendar package out there can also tie in who is hungry, grumpy, happy, anxious or any of the other million emotions that bubble inside a home.

So is my home really that different from yours? Not really. People are people and at the end of the day all we need is love. A simple truth, and a catchy tune. Creating magic does get harder as the boys get older… it’s so easy to surprise and delight a younger child. I work hard at showing love, even when I don’t feel like it. My prayer is that what little magic is left is still noticed and acknowledged in the hearts of my boys. And while my mommy role has evolved, it is still intact and necessary. Maybe even more now than ever.

As today is World Autism Day, please take a minute to learn the statistics… #1in68 children are now diagnosed on the spectrum. And also, please learn the signs because early intervention can mean the difference between a good day and a bad one.

Peace

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

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