Survivors

Definition of Survive:  

1. To remain alive or in existence.

2. To carry on despite hardships or trauma; persevere

     This past weekend I participated in my local Susan G. Komen annual Race for the Cure breast cancer awareness event.  Along with autism, this is a cause that is very close to my heart.  Sadly, my Grandmother died of breast cancer before I was born.  

The ladies in this picture with me are both breast cancer survivors and they also happen to be my sister and my mother in law.  They are strong, beautiful women inside and out, who along with my son, are heroes to me. 

I cannot begin to imagine what it is like to fight for your life. To be told that you have a serious illness that could be fatal.  To go through chemo, radiation, and countless surgeries.  To have all of your hair fall out and feel violently ill after your treatments.  These women have been through all of this, and they did it with grace and dignity.  I don’t think I could’ve handled it as well as they did.  When I start feeling sorry for myself, or having a pity party, I often think of these two women.  I think of what they went through, and how they kept living their lives despite their illness.  I am so thankful that they are in my life, that I get to spend time with them, and that they have truly SURVIVED! I love them both so much and can't imagine life without them. They amaze me.  

There are so many women I have come in contact with that are cancer survivors.  There is my best friend’s mother, my co worker, a friend who's child I taught, a friend who is also a fitness instructor, and several of my mother in law’s friends from her survivor group.  They have all inspired me and shown me what real strength and courage is, just like my son has.  

Above I mentioned my best friend’s mother who is a cancer survivor. This is a picture of her and me at my friend’s wedding rehearsal dinner.  Yes, if you invite me to an event like this, chances are I will drink wine and end up singing into a make-shift fork microphone with your mom.  Sorry, that’s just how I roll.  Anyway, I love this woman.  She is also one of my heroes and has a spirit like no one else.   Her positive attitude and zest for life is infectious.  I have learned so much from her and am a better person for knowing her – I am a better person for knowing all of these women.

Yes, you may not know these women by name.  They may not be famous, but they are my heroes! 

What's wrong with being weird?

This blog post is about being “weird.”   Grape Jelly on Pizza, which is another great autism mom blog that I follow, brought to my attention that a young man is being teased because he is 'weird'. She is joining forces with other bloggers to share in posting about their own 'weirdness' for him. A few other great autism blogs are also sharing their “weirdness”, Homestyle Mama with a side of autism, One Tired Mama, Ancora Impartial, and Parenting with Asberger’s Syndrome.  I decided to jump on the train and write about my weirdness too. I don’t care who you are; you’ve got something weird about you.  Everyone does!  And guess what, that’s ok!  We need to bring back the days where being a little weird is cool.  What is weird anyway?  Kids tease each other for everything even if it really isn’t weird.  Why would you want to be the same as everyone else? 

Being weird is part of my daily life. I am a musician and a preschool music teacher. What do people usually automatically think about musicians?  You got it, weird.  I sing, play guitar, jump and dance around with kids all day long.  Some people might think this is weird.  I think it’s kinda fun.  While it can be exhausting and sometimes I just don’t feel like it, it’s better than sitting at a desk all day long!  My husband and I have kids music cd’s and play at kid’s birthday parties, and other events.  We are like the nerdy music teacher couple on Saturday night live.  Again, some might think this is weird. Some people have even hinted around to me that they think my son has autism because my husband and I are both musicians.  Weirdoes. 

My face was huge in France!

Let me give you one example how my weirdness paid off.  I was in an all girl folk band a few years ago.  No, we weren’t famous or anything.  Yes, we slept in a bar apartment one night and played to a crowd of like 5 people.  But, one time we were asked to play at a festival in France.  For thousands of people.  My face was on a jumbo tron and we were treated like royalty.  It was a trip of a lifetime.  A free trip for being kind of weird. 

Of course, being a musician is not my only weirdness.  My bottom teeth are crooked, I can be loud and obnoxious, but I really don’t like being the center of attention. I get embarrassed really easily, and am kind of a shy, nervous person.  I’m scared of the dark and don’t like to be alone.  I feel guilty about everything and worry all the time if I have hurt someone else’s feelings.  I love to dance.  I dance and sing around my house and even make up dances.  I taught an exercise class once called “Just Dance.”  Okay, I’ll stop.  There are many more things, but I’m sure you think I’m weird enough now.  Go ahead share something that is weird about you!

My old band "The Figs." Love those girls.

Looking in a mirror on aisle 5

I heard him before I saw you.  It was like hearing my own child.  I looked around to see if somehow I had forgotten he was there with me, but he wasn’t. The sound was so familiar.  Then, there you were.  I saw your precious boy in the grocery cart.  He was talking to himself repeating words in a high-pitched voice.  You were talking to him looking at him adoringly.  I didn’t mean to stare.  It wasn’t in a rude way.  It was just so familiar.  It was my own life in front of my eyes; like looking in a mirror.  Forgive me for staring; I just don’t see it in front of me that often.  Someone else in my shoes.  It was the same voice, the same mannerisms, the same sounds as my son.  I felt like I knew you both so well.   I wanted to talk to you like an old friend.  I wanted to buy you a cup of coffee and sit down and ask you all about him.  I wanted to let you know that I was in the club too.  I wanted to give you a hug and tell you what a great job you’re doing, and that you are a strong and wonderful mother.  I wanted to hear your story.  I wanted to share with you my journey, my son’s ups and downs, struggles and successes.  I wanted to tell you to call if you needed a friend, or if you wanted to get the kids together.  But, how can you do that with a stranger in the grocery store?  I can only give you an understanding smile, keep walking, and silently wish you the best.

Vacation

On the plane. Thank God for iPads.

    I have been nervous about taking my son on a long trip.   I am very fortunate in that I have a genius for a brother, who has done very well for himself.   He, and my sister in law, are very generous people who happen to love traveling.  Thankfully they love us too, and always invite us to go on trips with them.  For the past couple of years, I have painfully declined going on these trips, even a trip to Italy.  My son has just not been in a good enough place to travel, and I just wasn’t up for taking the risk of what might happen dragging him across the globe. I wasn’t even up for taking him with me to the grocery store half the time.  I explain some of his issues and my fears about traveling in another blog here.  This time, however, my family was traveling to Colorado, only 2 short flights away.  For the past few months, my son has been much happier, and people talking and other things that have been known to set him off, have not been as frustrating to him as they have been in the past.  We had also taken him to Colorado a couple of years ago and he loved it.  So, my husband and I decided to give it a try and go for it.  I’m so glad we did. 

     Beckett was so excited to be in the airport.  He loved flying, looking out the window, and talking about the clouds.  He loves spinning, swinging , and most types of movement, so the sensation of flying was awesome for his little sensory seeking body.  He did become frustrated when the stewardess or pilot would speak over the loudspeaker on the plane.  But, thankfully we could distract him with toys, snacks, or put on his headphones.  He never went into a full-blown meltdown, which I was fearful of.  He even had some kind of a stomach issue that day, which was really fun in airport bathrooms.  Yuck.            

      He loved playing in the snow, but if it somehow snuck into his clothes and got him wet or cold, then he was done. But I guess that would aggravate me too.   We ate at restaurants, with very little fussing, one even had a live band, and it didn’t bother him one bit. “Who is this kid?”  I wondered.  He tolerated his cousins and even kind of played with them, which was great.  He usually plays alone, not allowing many people into his little world.  I found him and my nephew cuddled up on the couch playing iPad games together one night. 

     Whenever he would start getting overloaded and frustrated, we would take him to the “time out room.”  There was a circular shaped little room detached from the house overlooking the mountain.  It was all windows from floor to ceiling and had the most comfortable lounge chairs.  It was also the quietest space I have ever been in.   Needless to say, Beckett loved this room, so did my husband, who also sometimes needs a little “time out.”  I loved it too.  We would go and sit in there for a while and just watch the snow fall and everyone would feel better.  I need one of these rooms in my yard at home, but it would just overlook the grass and there would be no snow.  Not quite the same.   

The "time out" room

      All in all it was a great trip.  I was a little nervous about flying home, but not as much as I was to get there.  As luck would have it, Beckett still loved flying on the way home, and was awesome!  Unfortunately, my worst nightmare came true for a woman who was sitting in front of us.  She was traveling with her husband and 4 children.  She was holding her youngest who was probably 1 ½ or so.  The poor little guy was unhappy for some of the flight, but when we started descending for landing became totally inconsolable.  He cried so hard that he threw up a couple of times.  I wanted to help this woman so badly.  I knew this could’ve easily been me!  I felt so helpless; I didn’t know what to do for her.  I tried offering her one of Beckett’s toys, thinking the novelty of a new toy might distract him.  But, she politely declined saying,” Thanks but he might barf on it.”  I told her it was ok, but I didn’t want to be pushy or aggravating to her so I just let her be.  I wanted to offer her wipes, extra clothes, or anything else I possibly could, but I could tell, understandably, that she didn’t really want to talk to anyone.  I would’ve felt the same way.  I heard her husband say that they had another plane to catch in 20 minutes.  I don’t know what happened to them, but I hope they made it home ok. 

      We got on our next flight and made it home with no problems. The stewardess on the plane was really sweet and kept coming to talk to us, and Beckett called her a doctor.  This really cracked us up.  When we landed Beckett appropriately quoted Dora the explorer, saying “We did it!”  Yes we did, buddy, yes we did.

What did I learn from this experience?  I think I’ll stop being such a wuss, put on my big girl pants, and take my kid out more.  If he has a meltdown, oh well.  He obviously likes being out around people, doing new things, and having adventures, so I promise to try harder.

Just Keep Swimming

Source: reddit.com via Melissa on Pinterest

This pretty much sums it up.  If I had a dollar for every time we've watched "Nemo" in this house, I'd be a bizillionaire!  Just keep swimming my friends and remember, "Fish are friends, not food."  Oops, I ate sushi this weekend...

This Valentine's Day

This Valentine’s Day, show your husband how much you care…

1    Buy a nice gift.

Like that Michael Kors watch you’ve been dying for, or those killer boots that cost $400.  He’ll be so happy that you FINALLY did something for yourself and really, what makes him happier than seeing YOU smile?!

2.     Plan a special date.

      Arrange to have an afternoon at the spa followed by dinner and drinks… with your girlfriends.  Have the hubby pick up the kids from school and spend a little quality time with them.  This will show him how much you care about their relationship.  

3.     Show him you care about his health.

      When that commercial with David Beckham comes on, you know the one where all he’s wearing are those boxer briefs, and you’re trying to pretend like it’s not super hot, you don’t even notice it, and your not drooling all over the floor, look at your husband, raise one eyebrow and ask,” Have YOU worked out lately?” 

4.      Spend time together as a family.

Have your husband cook breakfast while you and the kids lie around watching TV.  Make sure to go into the kitchen every few minutes to get more coffee, and point out all the things he is doing wrong.  Guys love this.

Last but not least,

5.      Make some time for just the two of you.
     Cuddle up on the couch and watch your favorite episodes of the “Real Housewives of Wherever.”  Have your husband rub your feet and feed you chocolates, and then you fall asleep.  Your husband loves you so much; he will find nothing more romantic than gazing into your angelic face while you sleep, (probably dreaming of David Beckham).

Oh, Good Grief!

    Going around the internet reading different autism blog posts, I have learned that the online autism community doesn’t necessarily agree (to put it mildly) on lots of things like vaccines, diets, genetics, therapies, the color socks your kid should wear, (just kidding, seeing if you were paying attention) etc.  There are so many different opinions going around. Everyone is entitled to their own opinion, so in my opinion we shouldn’t attack anyone for what they believe is best for their child and themselves.  There is one thing that I’ve seen people get criticized for many times, and that is “grieving autism.”  I’ve read people’s comments that basically say, if you grieve the fact that your child has autism, then you must not love your child.  You don’t love them for who they are, and you want to change them. This really hurt me when I was going through the grieving process during the early stages of my son’s autism.  I felt horrible and guilty for having these feelings.  Of course I love my child and I don’t want to change who he is, but I think it is only human to grieve something that affects your family’s life so deeply. 

    Before autism, I had no idea what OT, PT, ST, ASD, IEP, or ABA, stood for.  I had never set foot in a neurologists or psychiatrist’s office, had no idea what a gluten/casein free diet was, and had never heard of Temple Grandin.  I didn’t understand kids that were “picky eaters” and had no idea what “sensory seeking” meant.  I thought I was in control of my life and that everything had to be a certain way.  I had never experienced real pain, sadness, or depression.  I had never felt what it was like to love someone so much, that you would sacrifice everything to take away their pain.  I had no idea what patience and strength REALLY meant.  I didn’t know what it was like to appreciate the littlest things and to celebrate the smallest victories.  I never had the experience of being so proud of someone simply for just being who they are.   My son has taught me countless things.  He amazes me everyday.  Do I wish I could make life easier for him?  Do I wish he had friends and got invited to do things with other kids?  Do I wish he could run and play outside in the afternoons instead of going through multiple therapy sessions?  Do I wish I could take away his pain and frustrations?  Do I constantly worry about the future?  YES, I do.  But, what he has taught me the most about is unconditional love.  Yes, I did grieve and some days I still struggle, but so what?  I'm doing the best I can – and thats all you can do.