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Be Careful WHO You Wish For

1/31/2017

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A wave of nostalgia swept over me as we drove past my 15 year old son’s former daycare on a cold, dreary January day. It seems like just yesterday I was dropping off my boys (and most of paycheck) to that glorious setting where they were cared for and loved, but, in reality, those days have disappeared as quickly as the snowflakes hitting my windshield. As I lingered at the stop sign deep in my melancholy, the building and the time it represented, left me wishing I could go back, if only for a moment.
 
I glanced over at my son, sitting next to me in the passenger seat staring out the window. The look on his face, although a face now more mature, wearing glasses and in desperate need of a shave, still looked the same. He looked deep in thought, almost concerned, as he stared out the car window and just like I did all those years ago when he was a toddler tucked safely in his car seat staring out the window of the back seat, I wished I knew what he was thinking.
 
I smiled as I pointed at his old daycare playground. “That’s where you use to play when you were little”, I reminded him. He looked in the direction of the playground, but, didn’t say a word. Then I recalled another wish I had in those early day. I wished every single day, as I approached that very same playground at pick up time, that just once I would not find him playing alone. I felt that same ache in my chest as I did back then.
 
Pushing that ache to the side, I snuck another peak at my boy, who still hadn’t responded, but, was staring out at the playground as if trying to remember when exactly he played there and with whom. It was a long lonely time ago…for me.
 
I had so many wishes back then, when I felt something was “wrong” with my son, but, had yet to see all that was “right”. In fact, there were times that I probably spent more time wishing than I did doing.  As I watched the daycare, the playground and my son’s childhood slowly disappear in the distance, I caught a glimpse of myself in the rearview mirror. I had no doubt the wishful face all those years ago looked younger and less wrinkled than it does today, but, the face staring back at me now is wiser, more educated, more aware and spends much less time wishing and much more time doing.
 
Ryan and I spent the rest of the ride, as we almost always do, in comfortable silence, so my brain had plenty of time to reflect on how my wishes have changed over the past ten years. And here are a few that popped into my head as we drove quietly along:
 
My wishes then:
 
For him to fit in.
 
For him to “be like everyone else”. (Most guilt-ridden wish. Ever. I'm sorry Ryan.)
 
For “it” not to be autism.
 
For him to eat more than one thing.
 
For him to never need a haircut, his teeth cleaned or a strep test.
 
For him to talk to me.
 
For him to know how very much I love him
 
For him to connect with me.
 
For him to connect with his brother.
 
For him to tell me about his day.

For him to say “I love you” just once after the fifty times a day I told him.
 
My wishes now:
 
For him to feel confident and comfortable wherever he is.
 
For him to be exactly who he is and NEVER be anyone other than that.
 
For people to understand “it” (autism) does not define him.
 
For him to feel happy and loved.
 
For him to be accepted.
 
For him to find success, in his way, in his time.
 
For him to believe in himself as much as I do.

For others to take the time to see how fabulous he is.

For the world to be more accepting of different.

For me to know then what I know now.

For me to go back in time and realize that most of my wishes then, were just that, MY wishes, not Ryan's.

Some wishes don't come true. And for that I am so grateful. Because you see, most of those wishes I had for Ryan then, weren’t really for Ryan, they were for me. Ryan did show me his love, even though he may not have said it. Ryan was connecting with his brother, he just didn’t connect the way I expected him to. Ryan was eating the only food his body would allow, not trying to drive his mother crazy. And dental cleanings and strep tests really do suck.

It’s ok to wish, and I still do, but, you really do have to be careful what you wish for, but, most importantly WHO you are wishing for. Today, I make sure that the wishes I have for my son are HIS wishes because those are the only wishes that really matter...then and now.



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Our Village

1/23/2017

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Birth: ​"The act or process of bearing or bringing forth offspring."

 I don’t know about you, but, when my kids were born it didn’t feel like “bearing” or “bringing forth” anything, it felt like someone ripped a tiny human being out of my body. Oh, wait, that's EXACTLY what happened.
 
Birth, they say is the easiest pain to forget. Well, I call bullshit. I totally remember that pain…even with an epidural.
 
Four years ago today, I gave birth to The AWEnesty of Autism and yeah, sure maybe using the word "birth" is an exaggeration, but, there were times, bearing my soul felt like something was being ripped from my body. Although I may have a flair for the dramatic, I do recognize that “bringing forth a blog” is NOT like having a human ripped from your body, but, there are quite a few similarities.

Just like most of us before we decide to bring forth offspring, we put some thought into it. We recognize the impact it will have on our lives, the responsibility, the love and the nurturing we must provide in hopes that our offspring will do good in this world. Before I started this blog, I wrestled with the responsibility and the impact my words would have on others and I wanted to make sure, just like with any of my human children I gave birth to, when I bore this blog, that I did everything I could do make sure something good would come from it.

After we have mulled over the good (loving someone unconditionally) and the bad (goodbye bar hopping) to this whole birth thing and we decide to go for it, the actual birth hurts like hell and while enduring that pain we start to wonder, “What the hell was I thinking?” I have to be AWEnest, digging into the depths of my heart and mind reliving moments that were so hard for Ryan and for me hurt like hell too, but, this time, no one was around to give me that beautiful epidural. I kept telling myself, just like I did in childbirth, "It will be worth it".

After you bring forth that child, you start second guessing every move you make. OMG, will he hate his name one day (at some point, yes)? Should I have made my own organic baby food (Hell, no)? Will this preschool increase his chances of getting into Harvard (Hell, no)? As with my children, I do a lot of second guessing with each and every word I type on my blog and on AWEnesty's Facebook Page. I worry that this belief may impact this person negatively or these words may give false hope to these people. I feel a sense of responsibility for this blog as I do for the actions of each of my kids. Just like raising an offspring you want to make sure you do your best to ensure your children do more good than harm and when mistakes are made, you can only hope that forgiveness will follow.

Here is the kicker though. Whether it was after a few glasses of wine or a very thought out plan, after a decision is made to bring forth an offspring into the world, although there are times you may feel alone, like when you are up nursing your baby for the fifth time and your husband is snoring loudly next to you and you fight the urge to suffocate him with your pillow, you really aren't. They say it takes a village to raise a child, and it does. Most of us have family, friends, teachers, doctors and other mom friends who impact our decisions as we raise our children after you bore your offspring. "Raising" a blog is no different.

Thanks to all of you, I have been able to bring forth this blog into the world, and you all have played a part to make sure I am making the best decisions as I raise it. Whether it's words of encourgament, criticism or helping me see another point of view, you are helping my "offspring" make a difference in the lives of the people it touches. I could not have done any of this without all of you...my village.

So, thank you. Thank you for four years of sharing, advocating and raising awareness. Thank you for inspiring me, inspiring others and inspiring hope. Thank you for helping Ryan and me teach, "different, not less". This whole birth experience and the years that followed would have been a lot more painful without all of you. Who needs an epidural when you have a village?

AWEnestly, I still would take the epidural...and all of you. 

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A cake to celebrate AWEnesty's first birthday...from my village.
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Hope for the Future

1/10/2017

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​Last night at the Autism Support Group I co-facilitate I was asked to discuss the horrific kidnapping and beating of a disabled man that happened last week. You see, as the parent with one of the oldest kids of the group, my family's autism journey, my son's progress and success give these families hope. How could I find any words of hope for such a heartbreakingly terrifying incident?

I wanted to spew a stream of obscenities, shout out, "An eye for an eye" and give everyone Jell-O shots, but, I knew that's not what these parents needed (well, maybe the Jell-O shots).

So, instead of focusing on those awful, terrible defendants, I focused on the young man, the victim and his family. I talked about this young man’s vulnerability, I talked about his torment and I shared my hope that one day he will be able to recover and overcome such hatred and ignorance. I also spoke of the fear and anguish his parents must have felt when he was missing and how quickly those feelings must have been replaced with a short lived joy that he had been found, and still more heartache after seeing the video of his torture.

I also told these young parents that the four defendants cannot take away their hope. That as parents, every one of them, first and foremost, must advocate for their child, that until their child finds his or her voice and is able to advocate for him or herself, their voice for acceptance and education must be heard the loudest.

I told them to be proactive. To role play and practice scripts with their child of what to do if someone is hurting them. I suggested that they go to their local police, fire, and EMS and educate them about their child and educate their child about community helpers in a non-emergency situation. To reach out to their neighbors and their friends' children to watch out for their child. 

Then, I had to look at their angered and worried faces and tell them I am sorry. I am sorry that evil does exist in our world and that no matter how much we educate, advocate and love, sometimes it is not enough, but, we still have to hope. I told them that we can NOT let the darkness of evil cloak the light of hope for their children’s bright future. Last night, hope was in that room.

I reminded them that a few short decades ago children like ours had no hope. They were institutionalized, marginalized and often times forgotten. Parents were specifically told not to hope. However, hope must start somewhere. And for autistic and disabled individuals, that hope probably started in a room similar to where I sat last night, filled with parents who knew better than the experts what their child was capable of and so they weren’t afraid to hope.

Parents who hoped that their child could learn, hoped that their child could progress outside an institution, hoped that their child would be seen for who they were and not the label they had been given and hoped that their child would no longer be a target of senseless hate crimes just because they were "different".

As I finished up my talk, I realized I did not swear and I did not spew hatred at those defendants, because in my mind, they are not worth my breath. The children of those parents who were sitting with me in that room last night (most under the age of 5), that is who we must breathe for, that is who we must advocate for, that is who we must hope for.
 
As I looked around the room, I saw tears, I saw anger, but, mostly I saw hope. Hope for a future that is filled with more kindness than hatred, more good than evil, more heroes than monsters and more acceptance than judgement.

​As I took my seat, wiping away my own tears, I had hope. Hope for that young man to trust again, hope for his family to find peace again and hope for the young children playing down the hall to grow up in a world more accepting and more aware than the one they live in today.
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The face of hope.
1 Comment

My 2017 Dreams for My Autistic Son

1/4/2017

1 Comment

 
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Yesterday was decoration tear down day, which is always a bit of a downer, so my husband and I cranked some classic rock music as we painstakingly made Christmas disappear. Hearing the screaming wail of Axl Rose helped me swiftly pack Bing Crosby up until next December.

One of the last decorations I took off the tree was Ryan's first Christmas ornament. And it brought about a wave of nostalgia, but, more importantly, clarity.

For years I would look at old photos of Ryan and see them in one of two ways: Before Autism or After Autism. Yet today, for what felt like the first time, I looked at this photo and only saw my beautiful baby boy. A boy who in 2001 (years Before Autism), I dreamed for him a bright future filled with happiness, love, good health and acceptance for whomever he would one day become.

None of those dreams changed After Autism.

Sure, upon hearing The A Word for the first time, I believed that the dreams I once held for my son would now be different, and in some ways they may be, but, the dreams that changed in my head, were never his dreams, they were mine. In all the ways that matter, really, truly matter, my dreams and his dreams didn't change After Autism.

So, as I packed up Ryan's First Christmas Ornament from 2001 safely in the ornament box with the lyrics of "Sweet Child of Mine" playing loudly in the kitchen, I smiled happily knowing that my dreams for Ryan in 2017 have as little to do with autism as they did in 2001. I still dream for him to be happy, healthy, loved and accepted.

Yes, there may be challenges I didn't anticipate that first Christmas all those years ago, but, I knew then, just as I know now, that I would do anything and everything to help make Ryan's dreams come true. Autism didn't change that.

I would like to think that this moment of clarity will remain with me throughout the new year and into the new years yet to come. I hope that going forward I will no longer look at photos of Ryan and see Before Autism or After Autism, that I will only see the baby, the toddler, the adolescent, the teenager and, one day, the man who was, and is, happily living HIS dream of being loved and accepted. And recognizing that regardless of age or time, the beautiful smile shining brightly from each and every photo was directed at me, the one person he trusts to always see him, not autism. 

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