One of the hardest things I have ever had to face in life was learning that my son had Autism. It wasn't hard because I thought less of him or I was disappointing in him, it was hard because I was scared, felt guilty and didn't understand.
I have looked back more times then I can count and thought, "Why was it so hard? I expected this diagnosis, in fact it's because I went to a number of doctors asking about it and because I wanted him reevaluated that we got this diagnosis in the first place!" but, as is so many things in life, it just wasn't that simple. I look back now and I see a mother who didn't understood what the diagnosis meant to the family, her son and life as a whole. I see a mother who felt an immense amount of guilt for years of seconds, moments, words, feelings and thoughts that had riddled the life she had created for her son who she loved so much. I see a woman struggling with a ground cracking beneath her feet and walls crumbling down around her as she began to navigate the world she was now a part of, though unsure as to how to do it. There was no map handed to her (though she wouldn't have been able to read it if there had been one) and there was no wise old guru to guide her, either (though had Mr. Miyagi shown up, she woudl have been too exhausted to understand him anyway).
So these are the things I wish I would have known back then, the things I wish someone could have told me (and convinced me of their truth). In no particular order, I give to you the personal lessons I've learned along the way.
1. I'm not alone. There are millions of people out there who are care givers to amazing kids who have Autism. They understand the struggles. They know that there is a big difference between a meltdown and a tantrum. These friends-to-be are all over social media (the Autism community on Facebook changed my life!) and support groups. But none of us are alone.
2. It's not my fault. I didn't l do it to him. I didn't give him Autism like the flu. I didn't drink or do drugs while I was pregnant. It was my job to protect him as I carried him for nine months and for the years to follow, and I did. Sometimes, these things happen and this time, it did but I can't take the blame for it. He has Autism. He was born with it, I didn't gift it to him.
3. The definition of Autism. That's a big one....and complicated. There's the dictionary definition and there's the real life definition. Over the years, I've learned what Autism is in our house. I've learned what it means for Piece but I will never forget the feeling of stupidity and guilt as I learned, piece by piece how Autism effected our lives and how it helped to shape who Piece is as a person. It's an understanding I wish I would have done sooner. I thought I understood what Autism was, but what I soon found out was that I didn't understand much at all. I wish I had understood all the intricate ways things like sensory difficulties and motor skill challenges and the differences in his brain showed themselves in his behaviors, behaviors we didn't understand before someone took the time to help us see.
4. It really will be O.K.The world isn't really crashing down on you. You will get through this and your child will be O.K. I felt like everything around me was falling a part and that nothing could possibly be O.K again; as if nothing could possibly develop into what I had dreamed of or even expected. But it's O.K. Maybe things don't look the way I imagined when I found out I was pregnant, but they are O.K...in fact, they are better then O.K! When I allowed myself to see that and believe that the shattered world around me would be reconstructed again, magic happened.
5. Take a deep breath. Stop trying to make your life look the way you think it should and embrace the way it is. I had spent years wanting to believe that I had it all together by showing others that I did. When I stopped trying to put my life into the constructs of others and embraced the frame work I was given by the miracles in my life, things fell into place. We found our normal, our routine and were able to find happiness and comfort.
6. Dreams don't need to die. They just need to be shifted and slightly altered. Maybe things won't look the way I had envisioned when I was pregnant, but that's O.K. As a mother, as a person, as a supporter of the ones I love, It is vital to continue to dream, hope and instill motivation and inspiration upon others as well as my self. My dreams don't have to die, they just had be re-dreamt. Maybe Piece's romantic relationships wouldn't look the way I had once thought, but that doesn't mean they can't happen. Maybe all of the dreams I had for him won't turn out, but that's my issue. It's for me to reevaluate and adjust, not his. Most importantly, as he grows, my dreams should be a reflection of his more then my own, anyway.
7. No. Not everyone in this world will understand him or even be good working with him. But that's O.K. He will come across people along his life's journey who do understand him. The best ones will do so in the most sincere and authentic ways and it is those who do find understanding with him and embrace him for who he is that will be worth it. They may even change my life, too. They will be more then worth the wait and the adventure traveled to find them.
8. Yes, he will. Over the years I have feared that he just wouldn't. He wouldn't graduate high school, he wouldn't have romantic relationships, he wouldn't find great and meaningful friendships. I feared he wouldn't go to college, get a job or be self sufficient. But what I know now is that yes, he will. He will do it all just in his own time and in his own way. Yes. He will. He will find his path and, while he might trip and fall a few times (or more) along the way, he will have an epic journey; a journey that any mother would be proud of.
9. I am not a bad mom. His struggles are not my doing by being a bad mom. I didn't provide him with a lack of discipline or guidance. His autism is not a result of my bad parenting. I didn't abuse him, I didn't mistreat him. The choices I made before he was diagnosed were based on the information I had (more on this number 10) and those choices, while were not the same I would have made if I had the information I have now, not bad choices. Hind sight is 20/20 and I can not find guilt in my actions based on what I learned later.
10. I did the best I could with what I had. I fought for him with everything I had, including my lack of self esteem, understanding and all of my second guessing of myself. I disciplined him, and tried to teach him the way I thought was best and what I thought was best. I can't live in the past, feeling guilty for things I wish I would have done differently now that I have the wisdom time and new resources have given me. I did my best. That is something I should be proud of, not ashamed of. Maybe it wasn't perfect, but I'm a mom. We're not perfect and through those imperfections we sometimes find greatness hidden.
Those words I say to myself as I look back are the words I wish to say to every special needs mom when they find themselves where I was. We are in this together. We understand a world that so many others never can, but there's some absolutely amazing things that come from these times. The trick is finding our way through them and back into the light.
Want to know what Piece wish he had known when he was diagnosed with Autism? Hear him tell you about it here!
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