Autism, I Am Aware

 

April is/was (depending on when this finally goes live) Autism Awareness Month.  meandbearSince I’m the parent of a child who has autism, I felt compelled to write a blog about Autism Awareness.  I feel a great responsibility when I write about autism, because we all have our own story.  I speak for myself and for my family, but not the autism community as a whole.  As with anything, there’s good and bad with autism and most people who know me will tell you that I don’t like talking about the bad – I choose to focus on the good.  Believe me, this has been an evolution on our journey.  For the sake of authenticity, I have to address the bad, but I’m not going to dwell on it.  And honestly, the good is so much more fun to share.

I’m aware that autism, as with most permanent medical conditions, is life changing.  So far, hearing the words “your son has autism,” is the single worst moment of my life (and there have been some bad ones).  Back when we received our diagnosis, I didn’t know where to turn, what to do or what to think.  My only reference point was Rainman.   It was a very hopeless time in my life – one I really don’t like to revisit, lucky for you!  

Let me just acknowledge – I’m aware there’s some really bad stuff that goes along with having a child with autism.

I’m aware that autism diagnoses have increased to an epidemic rate.  I’m aware that we still don’t know exactly what causes autism, or the best way to treat it.  I’m aware that autism is a hot button issue for insurance companies, and there’s great debate as to what an acceptable treatment is and who should pay for it.  Autism is expensive.  Autism is unpredictable.  I’ve heard it said…if you’ve met one person with autism, you’ve met one person with autism – each case is frustratingly unique.

I’m aware that the schools are overwhelmed.  The number of kids diagnosed has increased, so the need for special education services has increased – drastically.  I’m aware that in some areas, resources and support for autism are scarce.  I’m aware that the autism population is aging and there aren’t adequate programs to address their needs.  I’m aware that thinking about the future is scary, so I don’t.  I take it one day at a time.

I’m aware that there’s much grief, sadness, exhaustion, anger, hopelessness, anxiety and fear that go hand and hand with autism.  It sucks sometimes.  But I’m also aware that there’s an abundance of gratitude, support, grace, hope, happiness, acceptance and love in our life, because of autism.

I’m aware that we’re fortunate.  We’ve had resources.  We’ve had support.  We had the ability to move some mountains (and ourselves) when needed.  We’ve gotten results.

I’m aware that although it’s often really hard to do “typical” things with children on the spectrum, it’s worth the effort.  The early years were brutal.  People just don’t understand why your kid is freaking out.  There were times when I felt like, “There is no way this is my life!”  I was certain that I was being Punked, or I was having some crazy dream.  Oh for the love of God…my child jut pulled down his pants and is about to pee in the display toilet at Home Depot.  My child just sat at someone else’s table, in a restaurant, and ate french fries…from a stranger’s plate.  My child just took off all his clothes, in the hallway, at school.  My child just threw his body onto the floor, while pitching the mother of all crying fits, because it was time to leave the bookstore.  See?  Punked.  These are just a few of our experiences – I could fill a book (and hopefully, someday, will)!  All were mortifying when they happened – but in hindsight, I can see the humor in them, because…

I’m aware that laughter can get us through anything.  If I couldn’t laugh at our crazy uniqueness, I’d probably cry.  For as little as he says, our Bear is one of the funniest people I’ve ever met.  Life with him has given us a reservoir of material for stories at cocktail parties.  He also has the sweetest, most contagious laugh in the world.  The humor that he finds in us is just as precious!

I’m aware that I’m a better person because of autism.  I’ve learned humbling lessons on our journey.  It doesn’t matter who you are, your race, what you do, where you live, where (or if) you go to church, whether you’re rich or poor – autism does not care.  I admit that I sometimes judged people in my former life, especially people with the out-of-control child.  Oh you better believe I sized them up immediately.  Shame, shame, shame on me.   Karma baby!  I’m raising my children to be aware and to never let someone who’s different get picked on.  They know to stand up for those who need it, because they’d want the same for their brother.   My mantra is that we live in the biggest glass house on the block, so don’t ever throw stones.

I’m aware that I’ve grown thicker skin.  I don’t let other people’s thoughts affect me, like I once did.  I have more patience.  I have more tolerance.  This is not restricted to the special needs community – it’s relative to class, religion, ethnicity and sexual orientation.  Kumbaya, my friends.

I’m aware that slow and steady wins the race.  Even with baby steps, we’ve come a long way.  Barrett’s a work in progress, but that’s okay, we’re still making progress.   We have good days and bad days, but the good far outweighs the bad.

I’m aware that time heals all wounds.  Ten years ago I was frozen.  I was overcome with fear.  I felt like our lives were over.  There were no little voices in the house.  There was no laughter.  There were no adventures.  There was no hope – whatsoever!  Present day, we’ve got a loud, rambunctious, chaotic house that’s full of voices, laughter, joy and hope and I wouldn’t want it any other way.

I’m aware of the power of miracles.  We experience little miracles every day.  A prolonged period of eye contact.  Appropriate laughter at a joke.  A hug that is truly reciprocated.  An unprompted request that’s verbalized.  A full night’s sleep.  Spontaneous declarations.  A nonecholalic  expression of love.  Directions followed – the first time.   A clean trip to the bathroom.  A new food tasted.  It really is the little things that mean so much.  Nothing goes uncelebrated.

I’m aware that a little education and communication can change people’s views.  Some people are clueless and I don’t mean this in an ugly way.  Some people just don’t get it, and couldn’t possibly, without walking in our shoes.  I try my best to give people the benefit of the doubt, which is sometimes hard when they shake their head disapprovingly.  If they don’t understand, then it’s an opportunity to educate them (not preach to them).  Seriously, in an awkward situation, you’d be amazed by how the simple statement, “My son has autism,” can diffuse a situation (such as the fact that your child has inappropriately smelled a stranger’s hair).  Most people are very understanding and eager to learn.  If they’re not, you can’t take it personally.  It’s them, not you.  I laugh when I think of how they’re going to retell the story at their dinner table.

I’m aware that there are angels among us.  I honestly don’t know where we’d be today without the gifted skills, kindness and patience of the teachers, parapros, therapists and respite providers who’ve worked with our family.   Angels, pure and simple.  There’s a special place in heaven for those who work with and care for the special needs community

I’m aware that I’m part of a special sorority.  The hazing was Hell, but I’m proud to be part of an extraordinarily brave group of women.  We go by many labels:  Warrior Moms, Autism Advocates, Special Olympics Cheerleaders, Members of the A Team, pieces of the puzzle, wearers of the same t-shirt, Latchkey Moms…we are everywhere.  It’s funny, no matter where I go, I meet a sister.   I’ve had chance encounters in restaurants, hotel pools, parks, public restrooms, waiting rooms, elevators and restaurants.  Immediately, you go deep with the sharing.  There’s no such thing as TMI.

I’m aware of what it means to be truly grateful, because I am.  I’m so grateful for all my children, and Bear is a special piece of my puzzle.  He is the ying to my yang.  We balance each other.  When he is happy or has reached a milestone – I feel it deep down in my soul.  I know, so damn corny, but it’s so true.  He grounds me.  When I’m having a tough day, I think about how tough each day is for him.  There are no pity parties in our house.  I also know that he’s one of the lucky ones.  I know it and I am humbly grateful.

I’m aware that love can conquer all.  Barrett has a family that’s devoted to him and we’re bonded in a unique way – forever.  We are Team Smithie and we have each other’s backs.  Barrett will always be okay, as long as he has his family.  Sadly, there’s a high divorce rate in the autism community.  I thank God I chose the right partner (or he chose me?) and our marriage is stronger because of all we’ve been through.

I’m aware that faith can be tenuous on this journey, but without it, I’ve got nothing.

I’m aware that kindness and acceptance are all around us.  In the beginning, I shied away from people and gatherings.  I didn’t want to inflict our circumstances on others.  I literally went into hiding.  I really underestimated family, friends and strangers because I’ve been overwhelmed by the support we’ve received over the years.  There are so many good people who’ve embraced our family and treated us in a manner that has made me feel like we belong – anywhere.  No awkwardness and no explanations needed.  They accept our boy the way he is and they’re raising the next generation to do the same.  They are changing the world.

Oh yes, I am aware.

When did you first become aware of autism?  How has it affected you or your loved ones?  Do you have funny or hopeful stories to share?

49 thoughts on “Autism, I Am Aware”

  1. Ok well … I’m crying now because no one, and I mean NO ONE else could ever explain Autism in real life words so beautifully. I often wonder if you realize how many people you touch on a daily basis? You and your sweet, beautiful family teach so many people about the good in life.
    You make the world a better place just by being you ~ and I’m so proud to be able to call your friend :)

    1. Erin, you are one of our angels. I meant everything I wrote – I don’t know where we’d be with out you. You are so special and the way you fight for your students is inspiring. I know it hasn’t always been easy for you, but your families are so grateful. We love you. And thank you for your kind words!

  2. Our family is so blessed to know you all. Sweet Bear has taught our family so many things — unconditional love and acceptance being only two of the long list of things. We are better people for knowing you.
    Love,
    Mr. & Mrs. Merrick

    1. Marcy, you are too sweet. What would we have done with out the unconditional love and acceptance of the Theos? Well, probably be bailing Barrett out of jail for B&E! The way your kids have always embraced Barrett and forced him out of his shell has been a gift! We are so grateful for the love and support.

  3. Allie…Bare was blessed to be placed in your wonderful family. I have never encountered anyone with autism, that I am aware of, but having a couple down-syndrome relatives I can relate to your words. You are an inspiration! I pray for you and your family daily. Love you!

  4. Allie, your attitude is so amazing! I love reading stories about Barrett. He is unique , beautiful, and a pure joy to be around!

  5. Allie,

    The Brown family is always thrilled to hear we are a stop on the Smith summer trips. My kids still talk about the time when Bear jumped into our neighbors pool & last year when the kids got those brownies & danced in the fountains at Station Square. I am so happy that our kids are having great memories together. I am blessed to call you a friend.

    In your story you said that Bear had pulled down his pants and is about to pee in the display toilet at Home Depot. I busted out laughing because when I was about 3 I did that in Pgh Plumbing.

    I love you & wish you only the best.

    1. Girl – you are so brave to invite us back for third time! I am so grateful that we’ve stayed in touch after all these years and all the miles! We love the Brown family and be forewarned…Camden can’t stop talking baout the damn pirate ship of Payton’s…he’s coming for it!

  6. So moving. I am so blessed to have been a part of Barrett’s journey. He has shown me so much, tested my patience, made me laugh (out loud at times when he probably didn’t need that reinforcement!), and stunned me with his brilliance. He is a beautiful and happy child which shows he comes from a truly loving family. Again- I am so blessed to have his story intertwine with mine.

    1. Alicia, thank you so much! We are blessed by you, as well. I still remember when you changed your shampoo and Barrett wasn’t subtle in letting you know it! You handled the situation with such grace, I knew Bear had met his match! We miss you.

  7. Allie,
    This is an amazing insight for Autism awareness. Thank you for sharing your personal story. I am sure this will help and educate many people. You are a wonderful Mother and advocate.

  8. While I was reading this Mike kept interrupting me to tell me……….oh hell, I don’t remember what he was trying to tell me now. :) Finally, I said “Can you just wait a minute? I’m reading this and don’t want to stop.” You are a very special lady and Bear is a very special young man. Both extraordinarily talented in your own right. Don’t ever stop being you but especially don’t ever stop writing!!!

  9. Allison,

    We’ve watched the metamorphosis unfold….:) Through Bear, I think we have all taking a step or two closer to God. It’s funny how life works…things aren’t always on our own timeline; yet, when we do witness or hear about Barrett’s newest accomplishment its extra special. Sometimes the most precious gifts are the ones that are the most difficult to unwrap.

    Hugs,
    LAxo

  10. This post is so raw, so real, so moving. This is why people love you. Your precious children are blessed to have such a strong woman at the helm.

  11. The Chamblins are better people knowing this sweet, handsome, incredible young man. We love you and your family as our own and cherish each and every moment we have had with you. xoxo

  12. Thank you for sharing just a tiny part of your journey with your son and family.
    When I came to the part where you said, if you’ve read this far, wow, I thought, I’d read an entire book if you wrote one.
    You expressed yourself beautifully.

  13. I first became aware when watching Rainman. Though of course I was pretty young so it’s just in recent years that I have started to become more aware of everything this involves and that it is pretty different in many cases.

    1. I know, I remember saying to the doctor, “You mean, like Rainman?” He was so upset, because he thought the movie misrepresented the condition. All these years later, I think it’s pretty fair, but I’ve yet to meet someone just like that~

  14. While I don’t have anyone close to me with autism, I have taught martial arts to students that have autism. I’ve never really considered them different or special, I’ve always considered them as I did with all my students….individuals. People learn and react and behave differently in situations. Everyone is unique. As a teacher of anything, we need to understand our students as the individuals that they are, understand their needs, the best ways they learn and respond, and then teach to them. It’s not always easy, but oh so worthwhile. And if there’s anything I can do as a teacher to help improve the lives of my students and their families, I’ll do it! :) And thanks for all you do as well!

    1. I have seen martial arts do wonders for kids on the spectrum. They crave those boundaries. My son, however, couldn’t stop laughing. It was kind of funny!~

  15. Allie,
    Thank you so much for sharing your story. I feel so blessed to have these special students in my life each day. They have all touched my heart in their own way. I will dearly miss Bear next year. I feel that he has taught me as much as I have taught him. He is ready to “fly” from our little nest here and move on to a new adventure. It may take some time for him to adjust….but he will do just fine and continue to progress. Hugs to you!

  16. I don’t know you but I think you’re incredible. Your words are inspirational and just by reading them, I’m in awe of you. You and your family seem very special!

  17. This was so beautifully put ! From one of your “sisters” wearing the T-shirt with you, the Tommy Tribe is so grateful to be fans, supporters and more importantly friends of Team Smithee!! We have been blessed to watch Bear progress year in and year out and celebrate his victories with him!! I will forever LOVE LOVE LOVE the child who has a damn good pitching arm–(he throws a mean cheeseburger across a kitchen!! ) Love you all!!

  18. Whoa…the story was wonderful and so true. The accomplishments he has made are amazing and all because of the love and positive attitude you have always kept. He got the right parents and siblings …that he why he does so well. The support and determination you have with continuing to hit the milestones and celebrating them all. Xoxox

    1. Thank you! I do think he got the right siblings and parents. But full disclosure…I haven’t always had the positive attitude. The first two years were dark. BUT I do believe that a positive attitude is what turned the tides.

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