Last week, Autism Speaks shared one of my blog posts, well, actually, it was more like Ryan's blog post since it was his voice, his words. There were lots of lovely comments from parents who "got it". Parents who have had time to recognize that autism is not who their child is, parents who understand that so much more lies beneath that label. There was one comment though, two sentences and ten words, that pierced my heart like no others. "My son was diagnosed today. I needed to read this."
Those ten words instantly transported me back in time. I am in the psychologists office, tissues shoved in my face, heart in my throat. I can still feel the cushion of the chair I was sitting in. I can still smell the dampness of the psychologist's office from the rain that had fallen hours before we arrived. I can see the psychologist's mouth moving and I remember how badly I wanted her to just shut up. I wanted to cover her mouth so she would stop talking, so she wouldn't utter the words I spent years fearing. I wanted to grab my best friend Denial's hand and get the hell out of there. I can still see the psychologist's professional composure as she said those words, yet, I can also still clearly see the mother, and not the doctor, in her eyes as she struggled to say them.
As I read this mother's words on my blog post, I felt the same kick in the stomach, the same tears searing the back of my eyes and the same fear I felt all those years ago. Like. It. Was. Yesterday.
I wanted to reach through Facebook and hug this mom (Can you work on that Zuckerberg?). I wanted to tell her that I know the heartache, the uncertainty and the fear she was feeling at that precise moment. I wanted to tell her that as long as she loves him, as long as she advocates for him, as long as she accepts him, he will be ok. So, I did tell her all those things. I tried to help her understand, but, I knew that my words would bounce off her shattered heart like a pogo stick.
The day you hear The A Word, the kind, compassionate doctor may tell you, "Your son is the same little boy he was before you walked through that door", but, what they don't tell you, what they don't say, is that you are not.
Those ten words instantly transported me back in time. I am in the psychologists office, tissues shoved in my face, heart in my throat. I can still feel the cushion of the chair I was sitting in. I can still smell the dampness of the psychologist's office from the rain that had fallen hours before we arrived. I can see the psychologist's mouth moving and I remember how badly I wanted her to just shut up. I wanted to cover her mouth so she would stop talking, so she wouldn't utter the words I spent years fearing. I wanted to grab my best friend Denial's hand and get the hell out of there. I can still see the psychologist's professional composure as she said those words, yet, I can also still clearly see the mother, and not the doctor, in her eyes as she struggled to say them.
As I read this mother's words on my blog post, I felt the same kick in the stomach, the same tears searing the back of my eyes and the same fear I felt all those years ago. Like. It. Was. Yesterday.
I wanted to reach through Facebook and hug this mom (Can you work on that Zuckerberg?). I wanted to tell her that I know the heartache, the uncertainty and the fear she was feeling at that precise moment. I wanted to tell her that as long as she loves him, as long as she advocates for him, as long as she accepts him, he will be ok. So, I did tell her all those things. I tried to help her understand, but, I knew that my words would bounce off her shattered heart like a pogo stick.
The day you hear The A Word, the kind, compassionate doctor may tell you, "Your son is the same little boy he was before you walked through that door", but, what they don't tell you, what they don't say, is that you are not.
Something inside you shifts. Yes, there is the worry for the future, the concern that dreams you once had for your child may change, the stress of how you will afford all that is necessary for him while you are here and after you are gone, but, mostly there is the need for more. More information, more education, more answers, more patience, more awareness, more therapies, more advocacy, and more love. More...than you ever planned.
I get that now, and because I do, the more is not so scary or overwhelming, but, for that mom who only had two hours to process the words, "Your child has autism", may not. And the difference between the two of us is, I am "here" and she is "there".
When I was there, I researched the words, "cure", "alternative therapies", "treatment for autism", "gluten free, casein free diets" and in the end, we spent thousands of dollars on a listening program as a form of therapy to hopefully reduce the impact autism would have on Ryan's life.
When I was there, I would watch him spin the wheels of his dump truck and beg him to "play" with his truck.
When I was there I would watch him push the same button on an electronic toy over and over and over again then mimic the same noise to a tee and beg him nicely to stop.
When I was there, I worried so much about the boy who was yet to be, that there were moments and days that I missed the boy who was.
When I was there, I focused so much on trying to help him conform, to help him fit in and be like "all the rest", that I did not see how amazing his uniqueness was.
When I was there, I panicked and sometimes through my fear I tried to stop his scripting, his constant mimicking of television shows and video games that I did not listen to the incredible way he was trying to communicate with me.
When I was there, I saw the label and I did not see him and so, I wanted more.
Being there is hard. I wish I could show that mom how much better it is when she gets here. I wish I could tell her that her desire, her need for more still exists, but, it takes on an entirely new meaning.
Now that I am here, I no longer look for more cures or more causes, I accept my son's diversity and applaud every single step he takes, regardless of how different those steps may look.
Now that I am here, I no longer try and get my son to conform more, to fit in more, but, I give him the support he needs to feel proud of his differences and feel more confident about who he is, while trying to help him understand what is acceptable and appropriate in a "neurotypical society" without ever making him feel less.
Now that I am here, I no longer try and get my son to stop his unique way of communicating with me, but, instead, I try and find more ways to communicate in his language which always brings a smile, while still providing him the tools he needs to communicate in a way the world will understand him.
Now that I am here, I give my son hope that one day more people will accept his differences and that those difference won't really be so different, and that one day the world will see more Ryan and less autism.
Now that I am here, I still worry, I still wonder, and I still have my kick in the gut moments, but, those moments are so much fewer "here" than they were "there". I have had more time to accept his differences, more time to understand his incredible mind, but, mostly I have had more time to watch my son surpass all my fears, my worries, and show me that there is so much more to Ryan than autism. I have accepted that the moment that brought me more pain than I could have imagined when I heard the words, "Ryan has autism" may define that moment, but, those words do not define him or his future.
To the mom who is "there", I know that it's hard because you need more...more time, more acceptance, more progress, more understanding and more awareness. You have yet to see the progress, you have yet to see all the "more" that he or she will do, you have yet to see all that we have seen who are "here". And I know that getting from "there" to "here" is different for all of us, but, somehow knowing we all get here together, makes traveling from there to here a little less lonely and a lot more appreciated.
I get that now, and because I do, the more is not so scary or overwhelming, but, for that mom who only had two hours to process the words, "Your child has autism", may not. And the difference between the two of us is, I am "here" and she is "there".
When I was there, I researched the words, "cure", "alternative therapies", "treatment for autism", "gluten free, casein free diets" and in the end, we spent thousands of dollars on a listening program as a form of therapy to hopefully reduce the impact autism would have on Ryan's life.
When I was there, I would watch him spin the wheels of his dump truck and beg him to "play" with his truck.
When I was there I would watch him push the same button on an electronic toy over and over and over again then mimic the same noise to a tee and beg him nicely to stop.
When I was there, I worried so much about the boy who was yet to be, that there were moments and days that I missed the boy who was.
When I was there, I focused so much on trying to help him conform, to help him fit in and be like "all the rest", that I did not see how amazing his uniqueness was.
When I was there, I panicked and sometimes through my fear I tried to stop his scripting, his constant mimicking of television shows and video games that I did not listen to the incredible way he was trying to communicate with me.
When I was there, I saw the label and I did not see him and so, I wanted more.
Being there is hard. I wish I could show that mom how much better it is when she gets here. I wish I could tell her that her desire, her need for more still exists, but, it takes on an entirely new meaning.
Now that I am here, I no longer look for more cures or more causes, I accept my son's diversity and applaud every single step he takes, regardless of how different those steps may look.
Now that I am here, I no longer try and get my son to conform more, to fit in more, but, I give him the support he needs to feel proud of his differences and feel more confident about who he is, while trying to help him understand what is acceptable and appropriate in a "neurotypical society" without ever making him feel less.
Now that I am here, I no longer try and get my son to stop his unique way of communicating with me, but, instead, I try and find more ways to communicate in his language which always brings a smile, while still providing him the tools he needs to communicate in a way the world will understand him.
Now that I am here, I give my son hope that one day more people will accept his differences and that those difference won't really be so different, and that one day the world will see more Ryan and less autism.
Now that I am here, I still worry, I still wonder, and I still have my kick in the gut moments, but, those moments are so much fewer "here" than they were "there". I have had more time to accept his differences, more time to understand his incredible mind, but, mostly I have had more time to watch my son surpass all my fears, my worries, and show me that there is so much more to Ryan than autism. I have accepted that the moment that brought me more pain than I could have imagined when I heard the words, "Ryan has autism" may define that moment, but, those words do not define him or his future.
To the mom who is "there", I know that it's hard because you need more...more time, more acceptance, more progress, more understanding and more awareness. You have yet to see the progress, you have yet to see all the "more" that he or she will do, you have yet to see all that we have seen who are "here". And I know that getting from "there" to "here" is different for all of us, but, somehow knowing we all get here together, makes traveling from there to here a little less lonely and a lot more appreciated.
We got from there to here together.
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