When Ryan kicked ass on trick or treat this year, walking with friends, wearing glow bracelets and not having a single meltdown over how the costume felt, or why Blues Clues was walking down his street and not on his television in the family room, after I stopped sobbing over how far he has come, I couldn’t help but be amazed at how far I have come too.
As he blended into the crowd of teenagers laughing and giggling, I couldn’t help but wish I could go back in time to a previous trick or treat where I lay crying on my bed and pull back the covers and make me see what I couldn’t back then.
Throughout this autism journey, there have been many moments where I have wondered, “Where the hell is Marty McFly and his time-traveling DeLorean?” Where was Marty when I fell apart in that psychologist’s office after hearing The A Word, to give me a ride to the future to see that one day The A Word would NOT be as derogatory as The F Word? Why didn’t Marty just pull up curbside when Ryan was so obsessed with weather that we almost had to block the Weather Channel like some folks have to block Cinemax, and set that time machine a year or two ahead to let me know that one day we could actually plan an outdoor activity, even if there was a 60% chance of a thunderstorm? Where was Marty to show me that one day Ryan would be able to wear a suit and tie and sing in front of an audience of hundreds of people, when I was practically sitting on him to put on “scratchy” mittens and a hat in 10-degree weather all those years ago?
As much as I would have loved to take a road trip to the future with Marty McFly back then, if that DeLorean pulled up in my driveway today I wouldn’t want to shoot to the future: I would want to cruise to the past. To go back to a time when I was at my worst, to sit down with the mom I was seven years ago and help her see that, even if Marty McFly rode up in his DeLorean to show me how it all turns out, the future was not where I was supposed to be. Even though I would have loved just a tiny glimpse of what was to come, the present is where I needed to stay because the present is where Ryan always was, always is and always will be.
Yes, if Marty set the DeLorean to 2008, when Ryan was 7, I would grab the much-younger, less-wrinkled me (and admire her skin for just a moment) and have a sit-down with a bottle of wine and try and make her listen and learn from the 2015 me. And if the Past Me would listen to the Present Me, here is what I would say:
Stop comparing. He is not his big brother, the kid down the street or any of the kids in his classroom, so stop comparing him to all of them. He is Ryan and yes, he does not play like the other kids, he does not learn like the other kids, he does not talk like the other kids, but the way he plays, the way he learns and the way he talks is unique and really kind of fascinating. So focus on him; not on others.
Don’t try and change him. Yes, you will still see those differences, even if you stop comparing, but, don’t try to change him. Don’t make him look you in the eye when he can’t, don’t make him wear clothes that he can’t, don’t make him participate in activities that he can’t. Instead see all that he can do and accept him for that.
Enjoy him. When he laughs, laugh with him. When he spins under the kitchen light, spin with him. When he presses the same button on a toy over and over and over again, instead of plugging your ears and worrying, sit next to him and enjoy him. When he plays with a toy in a way other kids don’t, get on the floor and play like him rather than showing him “the right way.” Enjoy the fact he has found his way to play rather than making him play in a way the directions or you expect him to.
Listen to him. When he scripts in a silly voice, script back in a similar-sounding silly voice instead of saying, “I want to hear Ryan’s voice” because that silly script is his voice. He is communicating with you, so listen and you will hear him.
Be there for him in the present and stop worrying about the future. Oh, me seven years ago, the things you will miss worrying about the future. The beautiful, little boy who stands right before you now will be gone in the future. He will grow up and, like most teenagers, he will pull away. Don’t miss the present worrying about the future.
See the strengths, not the deficits. Yes, he struggles to communicate. Yes, he has a hard time making friends. Yes, he is incredibly rigid in his thinking. And yes, he has a lot of sensory sensitivities. But he is brilliant, he is a rule follower, he is musically gifted, he is hysterically funny and he will one day be stronger than anyone you know.
Appreciate the routines and schedules – they will pay off one day. When you skip aisle 5 (the pet food aisle) in the grocery store because you don’t have a dog or a cat and he melts down because you skipped a number, go down aisle 5 anyway. These routines, these schedules, are how he makes sense of the world. If you could figure out the world by hitting every aisle in the grocery store, wouldn’t you?
Admire him. Sneak into his room when he is sleeping, after his brain has finally shut down for the day, and brush your lips across his still-damp, clean head and appreciate its glorious smell without focusing on how hard it was to get it clean. Admire all that he accomplished that day, even if was just taking a shower.
See him. See past Autism to the boy who lies beneath the label. That is where you will find him. He is not on Google, he is not in the DSM-IV or DSM-V, he is not in a therapist’s office, a doctor’s office or in any book you will read. He is right in front of you, so see him.
Advocate for him. Make others see him, not his autism. Make others hear him, not his autism. Make others aware of him, not his autism.
Find new friends. Stop drinking wine with Denial, Clueless and Guilt and instead have Acceptance, Awareness and Forgiveness over to dinner. Oh, and let them bring the wine.
So there you have it: Some advice from Present Me to Past Me. Heaven knows, this list could be endless. Of course, if I would have said any of these things to the old me, the old me would have surely run over the present me with that DeLorean. Because the old me had to live it to learn it. She had to cry to laugh. She had to doubt to accept. She had to worry to appreciate. She had to understand to advocate. She had to hurt to love. She had to do it all on her own… without Present Me, Future Me or even Marty McFly.
Before the old me tried to take me out and run me down, I would try and get the last word. And those words would be to keep her mind, her eyes, her ears and her heart open and maybe then she will no longer spend quite so much time in the past or the future. Instead, she will be in the present, right where Ryan is, right where he needs her to be.
In the past and the present, I have made horrible blunders, but my biggest regret – the one thing I would want the 2008 me to learn from – is to appreciate the present, to love him and accept him here and now. The future will be here soon enough and I know I had to prepare him for it, but I didn’t have to let it steal the present.
So, hey me! Stop waiting for Marty McFly and just sit back and appreciate the present. Because by tomorrow, today is gone.
Kate and her family have lived in Mechanicsburg, PA for the past 20 years. When Kate is not busy advocating “different, not less,” she enjoys reading, binging on Netflix and spending time with her family and friends.
In addition to her advocacy service and her blog, Kate is also a Justice System Consultant for PA’s ASERT (Autism Services, Education, Resources and Training) Collaborative. With her prior experience working in PA’s Juvenile Justice System and her passion for advocating for children and adults living with autism, Kate enjoys her time training probation officers, police officers, attorneys, judges, correctional officers and others employed in the justice system in order to raise awareness of the impact an autism diagnosis has on those that become involved in our juvenile and criminal justice systems.
Kate hopes that, through her writing, she is sharing a real, raw and AWEnest look at how autism impacts her family, and in doing so, she may help other parents recognize that they are not alone on this autism journey. Her stories and photos are shared with permission from her incredibly AWEsome son, Ryan, who also wants people to believe that even though he is “different,” he is not ever “less.”
To read more from Kate, follow her on Facebook or visit The AWEnesty of Autism website today.