One Year in the Autism Diaries
And so the circle has come full back to where it is from. It has been one year that I knew my path had gone somewhat off the things I thought I knew. It would be a further two months of waiting for the official handing down of my son’s Autism diagnosis.
But, on October 26 the carefully crafted fragile glass blown dreams and hopes of perfectly normal shattered at my feet. And there were moments of course when I wondered if I had it in me at all to bend and retrieve the things I could, or, would I let them stream away from my grasp altogether. And there will be many, many, moments as I go on that I will wonder again.
Because that is life, nothing remains and yet it always, always returns to visit again those well-worn grooves. It pauses in the same spots we’ve wallowed in before and exquisitely we experience it all over again though it may wear a slightly different mask. It is life’s giggling little paradox. This too shall pass and then return again and again.
How has it gone you might wonder. Well, it hasn’t always kept a smooth stride and sometimes it barely limps by. But, time is still that great equalizer still that great healer and if you let it, it carries away the things that need to pass and opens up for new things to begin. And so it has been for me.
That sadness that opened up has not gone away. But, the tears no longer shimmer at the edge of every waking moment. What has taken the place of that is a thick sluggish sort of tiredness that I am left to resist. Still, I get moments, days, and sometimes whole strings of days that I am not consumed with worry or fears for the future or today. I am grateful in fact for the places I was forced to break. Every little broken bit has begun to re-knit and somehow I am stronger in the places that shattered and inexplicably I am made more lovely by the flawed imperfections that remain.
I’ve learned a vast amount in a very short time. That is the one thing I wish people not in the Special Needs World knew. It is not just the diagnosis that is handed down it is the knowledge in the midst of your shock that you must pick up that breaks a heart. I cannot begin to explain the worlds of difference the slight twist in dialect and the odd way the path twists off from everything you know that happens with the words “Your son has Autism”. There is a world here you never knew and things to be learned and the knowledge curve is steep. And with a thing like Autism the clock ticks mighty fast. Our children will continue to grow and make strides the whole of their lives just like any of us, but never will it ever be as marked as in these early years.
We’ve begun a therapy and school schedule that makes sense to us. Our goal has always been and still remains that we want our son to be a little boy first. To find the balance of pushing for function and letting him be a child has been a narrow beam. We think we’ve plotted a good course and are solid in our plan.
We’ve also made a few dietary changes for him and will continue to do these things as things that make sense come up. So far it is just been to lower his sugar intake, massively increase his DHA and EPA intake, and to cut much of the dairy from his diet. The GF/CF diet does dangle out there and I reluctantly think we will give it, at some point, a try. It is said that something like 20% of children do respond. Pulling the dairy is the first step towards that.
He has therapy 3 days a week. He is in a special needs preschool program where they work on Occupational Therapies, he has adaptive P.E. and we stick to that as the totality of his program.
How is Nicholas? Well, the progress is slow. Autism is the glassy covered surface of deep slow moving waters that until you are caught in between that placid smooth surface and the deep you cannot see. It is also a cyclic thing. Two steps forward generally for us has led to one step back. Some weeks are smooth and we’ve thought “oh, we can manage this it isn’t so very hard” only to be cruelly snatched back. And we will watch our boy disappear in a few weeks spent of flapping hands, disconnected eyes, grunting, barely touching his food and all the fun Autistic things. This has been in fact my biggest struggle not taking as hard these swift tracks back.
And as he grows Nicholas becomes more and more a rainbow boy. Things are harder and more challenging as we go. Many people who do not see him regularly do not understand this. They say “Well, we see him as a very active boy but not particularly disabled” or other trite things. But, they do not know the ways a year can change a boy. They do not know the exquisite ways Autism twines with the four year old mind. They don’t know the things I see every day. And they certainly do not understand the living of it day to day. They do not know that, yes, we believe that Nicholas will be exceptional and that he is a geat friggin’ kid and in fixing their eyes on the outcome they believe they see coming they dismiss the journey along the way. But, then how can they know? Most would not want to and I must say that as isolating as that can sometimes be I would not welcome too many people to dance around in this private pain of mine anyway.
It is an equal flip the times we’ve been surprised about how well he’s handled a new challenge and also the converse how spectacularly bad things can go. This last weekend I was reduced to tears on the way home from a visit with a friend. The visit went so terribly with Nicholas slamming doors trying to escape and repeatedly spinning and flapping and unable to engage with us. And yet an event like the Autism Walk shocked me with the smoothness that he moved. The key is I never know how a thing will go but I continue to expose my son and the world to the differences that abound.
But, having said all of that in the things that matter Nicholas is doing great. He is a happy, smiling, engaged, interested, and beloved little boy. The personality I have found in our case is not touched by Autism. And he has made progress. He still has spontaneous efforts at speech though he is plagued by impediment in the words he does say. That is not as important to us as the fact that he does try. He still receives our touch and spends his time with us. He is not solitary or retractable and he is grounded in our world when his attention allows. There is a lot to love about Nicholas.
So here we are one year in. And my normal will never be your normal. Nicholas’s best will look different than your best. I am adjusting to that. I’m learning what I can and leading with my head and then I run it all by my heart. Because my heart loves Nicholas and stays grounded in my desire for him to have the very best life possible for him. It longs for him to be happy, yes, even above sociatal norms of function. When I keep my head and heart in tune I find we can do amazing things.
So that is how the garden looks one year in. The sadness is kept at bay and I feed everything with hope and love but I’d be lying if I did not say that it does remain. And still I truly would not change anything now. A year ago I would have screamed DO OVER. I actually remember the way I played inside my head asking “do you want to do this for the rest of your life?”. It is funny to me now because I never, not even for a second, had the choice. If I could pass that one thing down I would. Lay off that goofy futile digital mental fuckery and questioning. I promise you someday you will see how moot that was. Autism creeps in long after your love has grabbed hold and by the time you see it is far too late to let go.
The fact of the matter is that in loving Nicholas and trying my best I am finding a purpose in my life. Perhaps the first true purpose I’ve ever had. It lives, breathes, and moves outside of me. And it ripples off and around to everyone else. I’d never ask to have that taken back.
At one year in I’ve circled back and forth many times but when the road has those fleeting moments of straightening out I’ve carefully marked my progress. I fully embrace the good today and I am learning to live with the not so great.
And that is Autism one year in. I am stronger and yet I’ve never been so fragile against both the beauty and the pain of this world. And that is just how it goes from here. There is nothing in this journey I would take back. I like who I am, I love this family, I love the wind of change and the opportunities I have found to grow, and I love Nicholas and that is how it is. I live out a great purpose today and all my life I know I was being called by Autism’s voice. I’ll pick up that cry and just carry on.