I Couldn't Imagine

I couldn't imagine a day when he would speak, but he did.
I couldn't imagine him being able to climb stairs on his own without falling, drink from a cup without spilling, eat with a fork and spoon on his own, and ride a bike, but he has learned these things.  
I couldn't imagine a day when he would be able to tell me his name, say yes and no, follow a direction when asked to do something, name objects and colors,  count to 10, but he can! 
These things did not come easy, it took months, or in some cases, years of practice for them to happen, and they still don't happen all the time.  But they happen.
Now I can't imagine a day when he will be able to read, write his name, have a real conversation, have a friend over to play, go to the bathroom on his own with no help or accidents.  Hopefully these things  will happen one day too and I'll have a new list of things that I can't imagine. 
Sometimes when I see other kids doing these things so easily, it hits me like a ton of bricks.  I feel angry or hopeless and wonder why it has to be so unfair.  Then, I have to remind myself to stop comparing and just keep up hope that anything is possible for my son too.  He will make his own progress in his own time.  Don't take the normal everyday things your child does for granted.  Celebrate every accomplishment, no matter how small.  It can be difficult, but each time life gets a little easier for my son, when he feels joy, or has more independence, I smile.

You've got a friend

I took this priceless photo the other day on a field trip with my son’s school.  So, my son has a friend, no big deal, right?  What?!  It might not be a big deal to you but whoa, it is a huge deal to me!  He doesn’t go on play dates, play outside with the neighborhood kids, and his invites to birthday parties are pretty slim. Now, I can’t lie, this is not your normal everyday friendship.  He actually hardly ever speaks to this friend, doesn’t really play with her, pretty much ignores her, and even runs away from her.  But, this persistent, precious, sweet little girl does not give up on him.  She says he is her best friend.  Her best friend. 

Beautiful words to a mother who has watched her son struggle to make a friend.  Sure, kids try to talk to him on a playground or at a park.  “What’s your name?” they ask, or they say something trying to start a conversation with him.  I watch holding my breath, a sinking feeling in the pit of my stomach.  I know what the outcome will be.  My son is sometimes interested and smiles, but he doesn’t know what to say to them, or how to say it.  Many times he just runs away, leaving the other child to move on to someone else.  Sometimes they will even come ask me, “Why won’t he talk to me?” or “Why is he being mean?”  “He doesn’t really know how to talk to you,” I say, “he’s not trying to be mean.”  “Why don’t you try to show him how to play your game?” I ask.  But, honestly, I know their frustration.  It is so difficult to try to talk to someone or engage someone that doesn’t talk or play back, and most of the time is totally happy being alone.   It can be heartbreaking at times.   

 But, this little girl in the picture above is relentless.  She does not care that he doesn’t talk to her.  She doesn’t think he’s mean.  She sees him, really sees him.  She tries to engage him, involve him, and help him every chance she gets, even when he doesn’t want her to!  I think she has a future career in speech, occupational or ABA therapy.  I know it will not always be this way.  As my son gets older, there probably won’t always be a little girl that wants to be his friend so badly and take care of him.  But, I can’t worry about that right now, today I’ll be glad that my boy has a friend.

Autism Awareness Month

The picture above is my family at our local autism society's recent autism awareness walk.  It is a wonderful  event that we have participated in for the last 3 years.  April is autism awareness or acceptance month, whichever you choose to call it, so I decided to write a post about a few myths you may or may not know about autism.  I guess I should also say these are things that my family has experienced that may not be true for everyone.  
1.  Myth- People with autism do not interact with others, don't look you in the eye, and do not like to be touched.  This is certainly not true in our case.  Yes, it is difficult to get my son to interact with others and look us in the eye, but he will do it and he likes people.  He is very interested, just doesn't quite know how to communicate with you.  As for not liking to be touched, he loves hugs and snuggles.
2.  Myth- People with autism don't understand you.  People with autism can hear you and can probably understand everything you are saying.  When I ask my son a question, he probably won't answer me.  He might just repeat what I'm saying, but he understands everything. 
3.  Myth-"Kids with autism just need some discipline.", or "He'll grow out of it." I've heard this time and time again.  Yes, I'm sure we could all discipline our kids a little more.  No one has the perfect child.  On our first visit to my son's pediatric neurologist he said, "You  have to pick your battles.".  So true.  My son is disciplined when he is doing something wrong, but this will not make him not have autism.  
As for growing out of autism, I know my son will always have autism.  I don't believe he will just grow out of it.  He may learn to communicate more as he gets older, this is my greatest hope.  But, because he will always have autism, does this mean he is doomed for life?  Absolutely not. This is what I would like  people to become aware of during autism awareness month.  Don't get me wrong, I'm not saying that raising a child with autism is easy.  It can be difficult, stressful, and requires more patience than you can imagine.  I'm sure there will be stages we go through as he grows, that will not be fun, to say the least.  There  are days when I worry, and days when I lose my mind. But, who doesn't have days like that?  I just won't lose hope that my son and family can lead a happy fulfilling life.  It might be different from the norm, but just as worthy.

Before I knew...

When my son was 18 months old I enrolled him in a Mother's Day Out program.  It was 2 days a week a few hours each day.  At this point in my son's short life, the word autism had not even crossed my mind.  He was my first and only child.  I knew he cried often, I knew he didn't sleep well and had very strange sleep patterns no matter how consistent I was with his schedule.  I knew he didn't really point at things or imitate others, and didn't really say any words.  But, he's just a little behind, he's just a boy, boys are slower, people said, and I believed them.  So, off he went to his first day of Mother’s Day Out.  I found the room he would be in, and met the teacher and aide.  When I was leaving, he was crying, which I knew he would.  Just leave, they all cry, he'll be fine in a few minutes, I told myself.  So, I left him there.  It was summertime.  I am a teacher, so I was off of work.  I felt like a free woman.  I had so many plans of how I would spend my few hours of leisure a week.  Then, an hour later they called.  My heart sank, was he ok?  Yes, he's ok the director of the school told me, but he is very distressed and won't stop crying.  We think you should come and pick him up.              

As I rushed over to the school, I thought about the rough night we had before, hardly any sleep.  But, this was nothing new we hardly ever slept through the night.  When I got there, I went to the classroom that I had dropped him off in. The teacher that had been so nice and grandmotherly, just an hour before looked at me with the utmost disgust and said " Oh no, he's not in here anymore! We had to move him to a different room!  He was SO mean to my babies!" She spat it out with such hatred, that I was taken aback.  I'm sure this woman did not mean to make me feel like the scum of the earth, but she did.  I felt like she kicked me in the stomach, then punched me in the face.  As I walked down the hallway to the directors office, I saw other teachers looking at me giving me the "what a horrible mother, I wonder what happens at her house" kind of look.  

When I walked into the director's office, there he was, red in the face, sobbing, and sitting on the floor with no shoes on.  He had kicked them off in his frustration.  Needless to say I lost it.  The tears fell faster than I could help it.  In that moment, I knew.  I knew that everything I thought about my life and my son’s life would be different than I expected.  I knew that this wasn’t going to be easy and we were going to have to work harder than others in every way.

 The director was actually a nice person.  She assured me that it was alright and maybe it was just because it was his first day.  Between my tears and embarrassing sobs, I told her that he had never stayed with anyone else besides his grandparents and maybe he just wasn’t ready for this. I left thinking I would never go back.  Over the weekend, the director called to check on us.  She said we should try again and said he would be moved to a different room with kids a little older.  I had already paid for the month and damn it that one hour of freedom was just too good.  So, I brought him back the next week.  I wish I could say that it turned out to be this great experience, but it wasn’t.  I never felt the love from his new teachers either.  They barely spoke to me, except to ask me to pick him up early because he was a disturbance to the other children during naptime.  That was fine, I understood so I did it. 

      Why am I writing about this?  Well for one, I still drive by that place and have an anxiety attack and I thought this would be good closure therapy. :)  Secondly, people always ask me how I knew my son had autism.  Well, this was one of those moments.  Not that I knew that day that it was autism, but I knew that something was different.  Thirdly, I like to look back at this and realize how far he has come.  He loves to go to school now, and since the mother’s day out incident, we have been fortunate to work with awesome caregivers and teachers that love him, and are just wonderful people.  Fourthly, I am not an angel, I have judged people when I knew nothing about them, just like we all have.  But, this taught me not to be so judgmental of others and to try to always speak to people with kindness and respect, especially when it comes to their children.  Just food for thought…

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.