“As a mom, you just ‘know.’ Whether it’s the start of a virus, too little sleep, or a broken heart, moms just have a feeling when something isn’t quite right with their child. I knew something was going on, something was different, something didn’t feel right with my 2 year old son Ryan. His eye contact was poor, he mimicked noises he heard and could recite an entire Thomas the Tank Engine video, but, he didn’t seem to have his own language. Ryan’s sensory system was always on high alert, whether it was the painful wails during a haircut, the cries that a bright sunny day brought on, or the resistance of anything ‘new’ he had to endure, I just knew something was wrong.
At first, we were told Ryan had Sensory Processing Disorder which is why his sensory system was so overrun by day to day sensory input, input that for most of us is harmless. This diagnosis, however, did not explain his rigidity and inflexibility to the slightest change in routine and his echolalic language. Very soon after that diagnosis, we had Early Intervention Services, Occupational Therapy, Speech Therapy and Social Skills Groups for Ryan. We were fortunate enough to work with some incredibly passionate people who did amazing work with Ryan as well as educating his freaked out mother. I still had a feeling though that there was ‘more.’ His therapists did too.
I remember the day we heard ‘more’ like it was yesterday….
The humidity caused the back of my shirt to cling to me as we got out of the car. I was trembling as we made our way around to the front of the building where the entrance was located. Cars zipped past on the busy street and I was so jealous of those strangers going about their day to day business that I wanted to jump in the car with them.
The door opened and we walked up a flight of stairs. My legs felt weak and the stairwell felt like it was closing in on us. The top of the stairs and the door leading to her office were now only a few steps away. I wanted to turn back around. I wanted to believe it was all a mistake. I thought to myself that we should have never come here all those weeks ago and if we just turned around and ran back down the stairs, I could jump in one of those passing cars and we could pretend it never happened. I could hitchhike, run away and disappear.
But, I didn’t run. Instead, I opened the door that lead to her office. The office where a lovely, kind and brilliant psychologist was going to tell me the answer that I had been both searching for and hiding from. She was going to tell me what I needed to hear, but, not what I wanted to hear. I knew it. I felt it. I had been feeling it for years.
As we pushed open the door, she was there waiting for us. She smiled and welcomed us as I tried so hard to smile back. My knees were shaking and now the dampness from an earlier summer rain mixed with the smell of an older office building’s air conditioner that was working so hard to remove that dampness was making me feel sick. I eyed up her garbage can, you know, just in case.
She made pleasantries about the weather, my kids, the school year quickly approaching and then, she got down to business. She went over all the tests she had conducted with my five year old son as well as the results. As she spoke, I couldn’t take my eyes off her mouth because I knew that was where the word would come from. The word I had Googled, searched, and obsessed over for two years. Her mouth, that had only moments before greeted us with kindness and a smile, seemed to instantly turn sinister. I wanted to take my hand and cover her mouth. I wanted to take the word she was about to say, the word that was forming on her lips, the word that would change the course of my son’s future, the course of my family’s future and shove it back into her brilliant brain. I wanted her to forget my son, to forget that we came here and go back to my house where my perfect little boy was waiting for me.
It was too late though. The word was coming. Before she said it though, she gave us an important reminder. She looked at my husband and me and said, ‘Remember, that no matter what the testing results show, your son is the same little boy he was before you walked through my office door.’ That did not sound like a disclaimer you make before saying, ‘Your son is smart, fabulous and has no disabilities whatsoever and he has a bright, happy future in front of him.’ You see, I was hoping along with all the other wonderful qualities of this fabulous psychologist, we could also add fortune teller. I didn’t care about her degrees hanging on the wall and how smart she was, I didn’t believe her. I knew she was going to change him. She was going to change me. She was going to take away my hopes and my dreams for my son with just one word.
And then she did. She said it. Her lips formed an ‘ahh’ sound and she said it, ‘autism.’ Then she handed me a box of tissues.
And I was right, I (we) was forever changed, but, in ways I could have never saw coming.
We embarked on a journey that my son and my family hadn’t planned and knew little about. Social skills, friendship groups, social stories, PECS (Picture Exchange Communication Systems) became part of this new journey. For every step forward Ryan would take, he seemed to take two steps back, and as a mom struggling to understand this world of autism, I faltered regularly as well. Initially I thought we could find someone to ‘fix’ my son, but, in time I learned, my beautifully incredible son was, and is not, broken.
I would love to tell parents of newly diagnosed children that there is a magical formula or an autism guru that will help you understand and support your autistic child and there is, but, it might not be the elixir you are looking for. The person who is going to guide you on this journey, is not an expert, a specialist or another parent, the person who will help you figure it all out, is the child standing right in front of you. No one wants you to get it more than your child, but, you will need time and patience. And as worrisome and confusing as an autism diagnosis is, there is no one who will be a better ‘expert’ and advocate for your child than you. So you need to make sure you see your child so that others will see them too.
If you would have told me 12 years ago upon leaving the psychologist’s office, evaluation and diagnosis in hand, that one day my son would be preparing for his SAT’s, representing his high school for the second year in a row at District Chorus, participating in his high school musical productions and being a little bit spontaneous, I would have never believed you. Fortunately, I never had to believe you or experts, the only person I ever had to believe in was Ryan.
And although I am so incredibly proud of Ryan’s achievements, accolades and success, when I am most proud of my son are in those moments when he fails, the moments when he stumbles, struggles and gets back up again. There was a time when he wouldn’t, when his body couldn’t get back up when the world pushed him down. Ryan has fought and worked so hard to get to where he is and he continues to work hard every day to fit into a world that is not always kind to those who are ‘different.’ Ryan still struggles with friends and how to safely interact socially, because in his words, ‘it’s just too big of a risk,’ but, most days he is happy and isn’t that all we want for our children?
But what brings me to tears, what takes my breath away, is Ryan’s willingness to share his story through my words and his own, so that others have a better understanding of autism which will lead to greater acceptance of those who are ‘different, not less.’ Last April, Ryan helped me write a blog called, ‘14 Words You Need to Know to Befriend Kids with Autism.’ We then turned the blog into a poster. That poster not only hangs in his high school, it is hanging in schools in several states across the US and in over 15 different countries all because Ryan wants other autistic kids to be seen and understood too.
For those of you new to the autism community that are ‘celebrating’ your first World Autism Awareness/Acceptance month who don’t feel like popping the champagne, remember this: listen to the experts, acknowledge the naysayers, nod politely at the advice givers, bite your tongue at the comparison seekers, tune out the negative Nelly’s then look at your child and remember no one is going to educate you, show you and prove to you that autism may be different, but, it (and your child) is in no way less.
As for me, Ryan’s mom, it took me a while to figure out that there was never anything ‘wrong’ with my son, except my perception of what I thought was ‘right.’ Sure, my mom hunch was correct, there was something “different” about my son, but, that difference is not bad or less, in fact, it’s extraordinary and that same mom hunch also knows that Ryan will continue to impact the world and help make it a kinder more accepting place to live.”
This story was submitted to Love What Matters by Kate Hooven of Pennsylvania. Follow along on her Facebook and blog. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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