When I first started blogging a couple of years ago, my intention was to share stories about our journey with autism. Life doesn’t typically provide a straight shot though, and I’ve meandered through the process.
When we first received Kane’s diagnosis, he was 6 and exiting Kindergarten, and we’d barely tapped the surface of what his diagnosis meant. He is now 10. He has made some pretty amazing and significant strides. He is aware of his diagnosis, and he is also private about certain aspects of it.
I respect that. I know that this is his story rather than mine. I’m merely the person along for the ride witnessing it, and because I’m a writer, I want to capture some of it. In fact, I go through my life taking notes, and sometimes those notes evolve into stories. Part of the reason I take notes is so that I can revisit the glimpses after they happen. I notice the nuances, the bits and pieces, the little edges of life. And when I do, I want to box them up so that I can treasure them. Life moves so fast that I’m afraid not to notice them, and that I will get to the end of my life and it will have zipped along without proper recognition. So, I capture the snippets when I can.
I did this the first few years of Kane’s life. I started to journal to him as a way to capture my observations about his development, personality, and the funny and heartwarming stories of his childhood. Somehow I knew that my memory would get fuzzy and I wouldn’t be able to recall them otherwise. I was right. And because my memory fades with time, I want to ensure that I also capture this journey, if only to be able to look back and say, “See how far we’ve come!”
I took off the majority of the last year from blogging because I wanted to actually treasure the moments. I felt like my life wasn’t just moving fast; it was moving at warp speed, and I didn’t want to miss living it. I still took notes, but I didn’t force myself to form them into stories.
I also wanted to be perfectly clear about one thing. This journey with autism is shared, but it’s ultimately Kane’s story to tell. I have a part in it, sure, but I am not the living story teller of Kane’s life. Only he is. And what’s more, he is beginning to own that role, and I couldn’t be happier as a parent because of it.
So, instead of writing about this aspect of our lives, I’ve been spending my time recently observing, listening, responding when needed, and respecting Kane’s space to figure out his own life. Amidst this, I’ve been asking myself what is it that compels me to write about our journey? What and why do I want to share any of it?
I return only to what I was looking for when we first received Kane’s diagnosis. Information. Hope. Knowing we weren’t alone.
I still feel this nudge to help others better understand what is often a perplexing and misunderstood diagnosis, but it’s now emerging from a different place. I now have information. I also have hope. It was always there, but knowing we are not alone has nourished that hope into becoming something more solid. I now have confidence that we will always be met with perfectly timed, synchronistic assistance exactly when we need it.
Somewhere in this last year, Jeff and I looked at each other and said the words, “He’s going to be okay.” And even more, we know our son is going to thrive.
A couple of weeks ago, Kane was given an award by his school. The peers in his class nominated him to receive the school’s monthly character trait, which was “Integrity.” Then, out of the children nominated across all grades and classes, the teachers and staff voted for the individual who most exemplifies this trait in all areas of school. Kane was selected for this honor and recognized in an assembly, and the words shared about him made my heart explode with pride. Not for anything that we have done, but for him. Because I know that he is finally growing in his own confidence about who he is and he is actively demonstrating it in his school environment. That is ALL HIM.
Sure, we’ve provided the supports, the guidance, the boundaries, and above all love and acceptance. His teachers have too. In fact, they have been a HUGE part of his development. So have his doctors, counselors, coordinators, and therapists. So have the community supports, the organizations, the safe places to be completely himself. And so have his grandparents, aunts, uncles, and cousins who have loved him for exactly who he is.
All the puzzle pieces we’ve been sorting through over the last few years have finally started to form the picture of who he is and who he has the potential to be. And let’s be clear. This isn’t about us changing him into something else. Autism isn’t something that goes away, or that we suppress. It is a part of his genetic make-up. We are also not without challenges, but we now know that we can work with and through the challenges, and we understand them much better than we did four years ago.
I recall an exchange I had the year after Kane’s diagnosis. We were sorting through some medications, and the side effects were disastrous. He was having multiple meltdowns each day. I was exhausted and felt like a failure as a mother. I went to a day long parent training for autism and was asked to share where we were. I couldn’t get the words out and instead burst into tears.
It was a breaking point for me. But it was also the first time that I internalized that I wasn’t a failure, that I would learn and have the tools I needed with help, and that what we were going through would get better. More importantly, I was reassured that there was hope and help for my son, and that ultimately him getting the services he needed would help him cope with this diagnosis in his life. I’ll take it a step further to say that him getting the supports he needs has helped him become more of himself, and the more confident in himself he becomes, the more he shares his authentic, beautiful soul with the world.
I’m not saying the journey is complete. Far from it. But life is a journey for all of us, and for some, it can feel like a humongous struggle. Heck, it’s taken me 40 years to find my place in this world and feel confident in who I am. If I can give my child (or any others) a jump start, then I relish the chance.
There’s something else worth noting. Jeff and I have consistently provided Kane with this message:
YOU ARE NOT BROKEN. THERE IS NOTHING WRONG WITH YOU. YOU ARE CREATED EXACTLY HOW YOU ARE MEANT TO BE.
Sorry for getting all capsy about it, but those words are so incredibly important for any child to hear that they really MUST be in all caps, especially when they live in a world where they hear conflicting messages about their wholeness.
The other part of the message that we consistently share is that we love and support him, we are here to help him, we are the place that he can land safely, at any time, with anything. That has meant some tough conversations at times. It has meant utter honesty. Because he counts on that. He knows we are stable that way.
I know that not all families are stable. I get it. But that’s why it’s even more important that I raise a child who understands his true north so that he can be confident in who he is and model that for others.
Integrity is defined as:
1. the quality of being honest and having strong moral principles; moral uprightness.
2. the state of being whole and undivided.
Being honest, trustworthy, having a strong moral compass is important. Being whole is even better. I’d even go so far to say that it’s critical in life. When we feel whole in our lives, we put our best selves forward. We act in ways that are in sync with our internal compass, we follow our passions, we live with kindness. We feel good.
The teacher who announced Kane’s award recognized him as follows:
“He’s willing to work with all students in his class. Not just his friends, but all students. Everybody. He’s a role model because he puts his best effort on every piece of work. Every time. He’s constantly trying to follow the rules of the classroom. He’s constantly looking for ways to follow the rules outside the classroom. On the playground. In the lunchroom. In the hallways. He always has integrity. He always listens to his teachers. This is my favorite part. I have seen this young man treat everybody the way that he wants to be treated, so he is so kind.”
That last part. That’s the part that caught my heart strings and yanked. And as I welled up, I happened to look over at his classroom teacher from last year, who was also looking at me with tears in her eyes. This pride, this love, this amazing journey is shared by the people who have had the chance to know Kane and who have been an integral part of his development.
I have more to share about our journey. It’s coming. I’ve had to process it, and I’ve had to take some time to be able to put it into words. I intend to share the things that have worked for us and why. And when I do, I’ll be sharing it with respect for Kane and what he wants to share.
In the meantime, I leave you with this. I journal daily, and today I captured this nugget. “All of the hard work of the last few years – the faith in the journey, even when I couldn’t see the end – is now paying off. I am witnessing the miracles coming together to form a picture I can see, and for that I’m eternally grateful. I acknowledge the divine hand in my life, and I am so incredibly thankful for it. It is overwhelming at times to feel this blessed, but I also know that we humans are designed for this. When we witness the blessings in our lives, the whole of the universe rejoices with us.”
Today, I hold space for gratitude. I am thankful for the blessings, of course, but I am also grateful for the challenges. Without them, I might not have fully appreciated or even noticed the divine hand in my life. I am also thankful for the angels among us who have played a part in our lives. And I am beyond grateful for Kane, who continually inspires me, stretches me, and guides me, even more than I do for him.
On a closing note, I’m working on a multi-part blog series. I’ll be focused on some of the challenges that we’ve experienced and some of the major successes. I look forward to sharing this with you as it comes into being. If you want to stay connected, please subscribe.