Gina’s Story

Gina RiveraThis Friday gives me an opportunity to introduce to the first of MANY people to share their stories and journey with autism. It may be themselves. Someone they love. Or both. I turned to many people and have many lined up and cannot WAIT to share them with you. Yet I needed a place to start. Who was the person to kick it all off? I turned to Gina and asked her to fill some pretty big shoes and start this dialog. She graciously stepped up to the plate.

Gina is the administrator of Dear Autism Mama on facebook and the blog http://www.dearautismmama.com/ . She also spearheads a project to share hope to those struggling with a new diagnosis (and reminders for those who hit that lower point) The project even has a welcome. She writes: Welcome to Project: Dear Autism Mama… Letters of Compassion, Hope, and Joy, a collaborative project by mamas all over the world, writing letters to fellow autism moms to help them through this journey.

So this week she has run with this idea of sharing journeys and stories to better encompass the brand and flavor of Autism. Em’s brand is unique and her flavor is generally mild. It’s not like that for everyone. Gina was so thrilled to do this and let me tell you between weather, her children and projects, we choose to share something even she had forgotten she had written. ENJOY!!!

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Mindfulness in autism. I’ve been thinking about this so much lately. Some of you may recall the experience that I had several weeks ago where I was verbally attacked over the intention of this new site. You can read my response to the experience here. I don’t want to rehash that experience, but it did start a conversation in my heart about sensitivity and compassion that I’ve not been able to release. And it appears that, what started as a terrible experience has opened up a new view for me of the relationship between an autism diagnosis, the world’s impression(s) of autism and the ASD individual’s self-esteem as it relates to their diagnosis.

My son is just 7 years old. He’s just now becoming aware of his place in the world and the things that make human beings unique individuals. He knows that he has autism and he thinks that it’s fantastic. That he’s been given a gift that most other’s do not possess and cannot acquire. He was born with a brain that has to work harder at some of the typical daily experiences that we all have, but in return, his brain is so advanced that he is processing information at the level of a child far older than he. He looks at neurotypical folks with a measured level of sadness and compassion that they will never know life in the way that he does. Yet he also understands that this difference is isolating, to a degree, and as he attempts to navigate the waters of friendships and interpersonal relationships, he finds himself lacking in social skills that come so easy for others. Sometimes, he thinks he’s a jerk because he can’t connect easily with others. He says that he’s the worst kid. He wants a different life. He is sad.

There will come a day when someone will tell him that there is something wrong with him because of his autism. It won’t come from any of us who love and support him, as we don’t believe that there is anything wrong with our buddy. But someone will look at him, see that he is different, and will say hurtful things because of it. And he will begin to feel that autism isn’t as cool as he once thought it was.

Or maybe he won’t.

As his parents, Bruno and I have never intentionally done anything to make the fireman feel broken. Before he was diagnosed, we certainly struggled with this child who seemed to openly defy every single thing that we ever asked of him. It was a very dark period of our lives, feeling like terrible parents who didn’t know why our child hated us. Why he was incapable of treating us with respect. Why the terrible twos seemed to be a permanent reality, even after the twos had passed. But then, in what turned out to be our absolute darkest hour, we were forced to hospitalize our baby so that he could get the mental health services that he needed. And Bruno and I began to learn about autism and what our little guy was living with from his perspective. Our hearts began to open up with the understanding, and we were able to begin to see what our little guy needed so that he could find peace. And in helping the fireman to find peace, we began to experience peace, ourselves.

In those very early days, months… even years… we began to reframe our understanding of autism. It went from a scary word that we knew just enough about to be terrified, heartbroken… and clearly misinformed. What we knew about autism could have fit on top of the head of a pin. We knew that Rain Man was supposed to be on the spectrum and that, at the end of LA Law, it turned out that the whole series was made up in the mind of a non-verbal child on the spectrum. That was it.

Shortly after his diagnosis, I was offered a position working for a local autism non-profit day treatment program for severely impacted adults. I struggled deeply with wanting to work in this amazing program and the need to run far far away from autism, rather than dive deep into the trenches with rolled up sleeves. And I didn’t quite understand that there was a spectrum and that our child was somewhere on it. I just thought that autism was autism, and one day I would be dropping off my adult son at a facility just like this one, where he would sit on a bean bag all day and listen to music. I didn’t know. I didn’t understand. I had no insight beyond the images around me, the public perception of autism and the fears that laid deep in my heart.

And because I had no real understanding, I also had no hope.

Every child deserves to have parents with hope. Every child deserves parents who refuse to let them give up and succumb to a misguided understanding of autism. Every ASD child deserves to have pride in their diagnosis, because they have a clear and correct understanding of their true potential. Every ASD family deserves to dream, and hope and pray and have very realistic expectations that their child will be able to break the mold that society has constructed.

Even as I write this, I understand that I’m coming from one end of the spectrum while I have friends with children on the other, lower functioning, end of the spectrum. And while I can’t speak to their children’s potential, I do know that these mom’s are not content to simply accept a reality where their children do not flourish. The victories will look different no matter where you are on the spectrum. But every single place on the spectrum can have a hopeful outlook. Simply because, what hope looks like for one person can be different for someone else. Hope for one family could mean that one day their loved one will be able to communicate using an ipad! What an amazing leap of progress for a non-verbal child! And what an amazing gift for the entire family!

I’m all over the place here; I apologize for the completely unorganized thoughts… I’ve just been rolling around with these thoughts for a while and wanted to share them. Let’s see if I can tie this all back into what I originally began with… When I encountered the bully a few weeks back, she was very upset that I had written about the difficulties of raising a child on the spectrum. The heartache, sadness, grief, sense of loss, etc. While I don’t regret writing those things, as I believe that we all have a right and responsibility to honor our feelings, what this has pointed out to me is that, had I known- really truly known- what autism was in those very early days, I might have reacted differently. I would have still felt most of those feelings- it’s just a fact of life. When we’re expecting lemons in life and we get apples instead, there is a period of adjustment and we do what we have to do to reconcile the change and redirection. But I don’t think that I would have felt the level of grief had I known that we were going to be ok as a family. That the fireman could grow into his autism and wear it like a finely tailored coat. That autism means that we have to find a different way to relate with our children. That the path to finding that way to relate teaches us so much about ourselves and the world around us. And that the true gift that we get from the journey is that we are better people for having opened our eyes to an alternate understanding of sensory processing and methods of communication. What a gift and how unfortunate that others will never have to look at things differently because they will never have to.

How do I feel about the situation from a few weeks ago now… I still maintain that there is something going on with the person who attacked me that I am unable to control or do anything about. But I also feel a great deal of compassion for her. When she lashed out at me, it was because she felt that I had hurt her. That my (previous) anger at autism was a blow to who she is. Wow. I never stopped to think that anyone would take it that way, because I don’t see it that way. But now I’m looking at things from that angle, along with the other angles that I typically employ, and I have a newer understanding of autism again. My understanding continues to grow, reshape, deepen and widen. And as it does, so does my understanding and compassion for the fireman.

What this tells me, though, is that it’s vital for us to begin reconstructing the way that society sees autism. Yes, difficulties within autism exist. They exist for those living with autism and for those loving someone with autism. But there is also a great deal of hope and possibility for those on the spectrum and we need to begin to acknowledge, honor and celebrate that. We need to show the world what success with autism is. What our children can accomplish. How the world can benefit from every level on the spectrum. Because autism is changing the way that we see each other and ourselves. When we take that compassion and hope that we have for our children and beginning applying it throughout our daily lives, it will begin to impact and shape society in time. Perhaps autism is the turning point in society. So many see it as a sign that things are drastically wrong. And I don’t deny that we need to look at why the instances of autism have increased so much. But we also need to look at how the beauty that our ASD kids bring to this world is so sorely needed at just this moment. Perhaps that is the real secret here. Our kiddos could be the teachers we need to make a major mind shift in the way that we interact as a society. Had someone told me all of that in those very early days, what amazing hope I could have had from the beginning. Thankfully, I figured it out on my own. I hope that we can reach as many mamas and papas as possible to spread this awareness. Autism is going to break the mold and rebuild one that we can’t even conceptualize today. Our kiddos will be the ones leading the way. I can’t wait to continue to learn from these truly special individuals. What an amazing blessing to have a front row seat to hope!

(I concede that my vision, thoughts and opinions represent where my family and I are at this moment in time. As ASD is a spectrum disorder, your reality could be (and probably is) different from mine. I encourage a discussion that includes all perspectives. If you have something to share in this discussion, I welcome you to do so in the comments. I am learning every single day from my son, my family and the world that we live in and I find that to be a beautiful example of transference. We can all benefit from multiple view points!)

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Please Show Her Some Love! You are all the best!

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