The First Day of the Rest of Our Lives
Dear readers, brace yourselves. This is a long post but there was no way around it. When life’s plans change drastically you can either spend the rest of your days mourning your original path or you can remap the journey but there are no shortcuts for that and no pretty summaries either. At least not for me. I’m not good at bulletpointing my way through life. I need words. Words are my anchor, my breadcrumb trail into a new destination, my friend, my guiding light when it looks like I may get lost, my way out and my way back in. So brace yourselves. This is a long post but there was no way around it. Just into it.
That sunny day in June ended up being the end of everything. Of the everything I knew, at least. Of the everything I thought I was yet to know and had all mapped out in my motherhood journey. That day in June was the beginning of everything else.
We had waited for this day for so long. Almost a year on a waiting list, countless forms and reports, a lot of questions and very few answers for our 3 year-old boy’s developmental delays. There was relief, yes, when the words finally spilled out of the pediatrician and speech therapist’s mouths: “Autism.” We weren’t crazy after all. It hadn’t all been in our heads. The children he didn’t play with, the toys left untouched, the mountains of soft cuddly toys that never graduated to friends, the tantrums too frequent, too sharp around the edges to be classed as simply tantrums, the sparse words and even sparser sentences living side by side with complete lines from movies recited perfectly, all the time, anywhere, everywhere. There were also the side glances, the movements, the endless singing and humming, Vivaldi’s Four Seasons and Bach’s Brandenburg concerts known by heart at the age of 2, choices given and never taken, and the sleep… the sleep that had eluded him and us for 3 years and counting. It wasn’t all in our heads. It wasn’t all in our exhausted bodies. Now we knew. Now we know.
Nothing changes, we said to each other. We already felt it was coming. This was positive. The added benefit was that we could now ask for support and that could only be a good thing. We came home, I had a little cry and carried on. We were leaving for our holiday the next day. Nothing had changed.
Our sunny break started like so many others before, navigating airport lines like conflict resolution experts, mobile phones at the ready at the first hint of distress, grabbing kicking legs at security and taming meltdowns in an airplane. At the beach there was dry sand running in 33c heat, often over people’s towels and managing performative acrobatics for the parents of other children. This is a general occurrence so nothing new here. We are experts in defusing social awkwardness with lighthearted chitchat so we had this, but this time I felt especially irritated. Here, on my favourite place on earth, the sun was now hurting my eyes and my resourcefulness was running dry. Then there was the pool, a literal water container of social traps and norms we could just about tread with apologetic smiles and operating on a tightly coordinated front. Most of it was successfully managed as we could still pass a lot of it off as toddler behaviour, but some of the stares and more inquisitive, embarrassed looks made it through my wall of self preservation. I had been doing this for ages so why all of a sudden did it feel like being hit by sharp metal objects at every step of the way? Why did my stomach feel like it was being punched and why did I so badly want to punch every stomach in sight? Why did I despise every child around me and why was I scolding my own child a bit too harshly? Why were the tears insisting on pushing their way out while everybody else laughed under the summer sun?
Nothing changed, right? No, not really. Except that everything did. Because the slimmest hope I had harboured that he may “just grow of of it” had now been taken away, replaced with a diagnosis, a reason for our doubts and a new future. And somehow, all of a sudden that gets you, first in those devilish details before the big picture starts to take shape. You can’t put a name to it immediately but then you realise there is a word for these collected fragments of insurmountable loss. It is grief. It is grief with all its stages; the sadness, the anger, the hopelessness, the acceptance, the sadness again. On the beach, in the pool, I was dipping my toe in each and every one of them.
It’s been nearly five months which is absolutely nothing in the grand scheme of things. I haven’t been able to write on the blog as everything outside of this has felt so utterly superficial. All the struggles of the parents of typical children, their days ending in wine because there were too many toys to pick up and too many questions from the toddlers, everything sounded completely overcome-able and rather enviable. It made me angry, sad and ultimately despondent so I stayed silent, licking my wounds and finding my ground.
I have not even begun to scratch the surface, to learn all there is to learn so I can support my boy. In my eagerness to become his most informed champion and greatest ally I started reading like a woman possessed and joined every online support group I could find. But because of that I also started to feel like a football, kicked between stories of sheer despair and horrendous strife, and uplifting tales of achievement beyond my wildest dreams, furthering confusion and anxiety.
Needless to say, there are some seriously shitty days. There are days when all I can see is the word, the diagnosis, swimming mockingly in front of my eyes. There are days when all I can feel is loss; the missed milestones, the erosion of expectations, the hilarious toddler conversations we would never have. As school approaches I lay awake at night thinking about the statistics, not sure where I have read them or if they are really right but the numbers keep shouting menacingly in my face. 75% of autistic children get bullied, only 15 percent can hold down a job, a large number struggle with depression, anxiety, OCD… the list goes on. There are days when I think I have stuck myself together enough to function only to be summarily punctured by milestone emails from Babycentre reading something like “The charming speech and cute mistakes of the typical three year old are a wonder to behold… Your child’s growing proficiency with the English language should be music to your ears!” Funnily enough, though, what is music to our ears is music itself. The music that plays continuously in our house. Entire classical scores bouncing off the walls from 6 am to a little violinist playing dexterously with a spaghetti stick. Bach is king, Vivaldi a prince and more recently Coldplay is slowly climbing the charts to dethrone them all (*shudders*). Whoever is playing, though, you must have a stick at the ready or risk what we now know is not a tantrum but a meltdown. And these can come anytime, anywhere.
We are prepared. We are prepared for World War III just to go to soft play but then other battles ensue that don’t directly involve our child and we didn’t bring a stick for that… You see there is never a way to change the fact that a 3 year-old girl has just come over as you sit next to her mother to tell you, gloating with pride that she is going to get juice at her brother’s sixth birthday party in an hour’s time. And you say ‘that’s nice’ but then World War III just started inside your chest just as the mother starts making small talk. And a stupid ball of wool grabs hold of your throat when she talks about the funny things kids say and you, in an effort to not stop breathing, go for it and say ‘my son has autism. His speech is delayed.’ And then you get the well intended reply that there was a girl like him at her daughter’s nursery and how great that was because it taught her child about diversity and difference. You’ve been at soft play for less than 20 minutes and your child has already become a learning prop in someone else’s life. And inside your head a voice says “welcome to your new life navigating judgement, preconception and alienation, even when it’s well intended. Mapping out your new journey is also going to have to include some seriously sturdy buckles and a skin as thick as leather.”
The thing is, I was that mum even before I became one. My birth story is not one I go into with much detail because it wasn’t very nice but as they pulled my baby out of my stomach during an emergency c-section he cried hard and scored the maximum on his Apgar. We were ok. He smiled bang on at 2 months, rolled when he was supposed to, crawled like a pro and was walking at 10 months. So he wasn’t interested in toys and his sleep was all over the place but to some extent all children experience a degree of this so I shrugged it off and carried on. I was the mum of a neurotypical child to the best of my knowledge, until the day that I wasn’t. And then this wakes you up to a whole world of otherness, the very world your child now inhabits and it also makes you think about how you contributed to it before you became his mother.
Before my son I looked at difference and disability with what I thought were open eyes and an informed attitude but nothing could have been further from the truth. I saw it at bay, at a safe distance, thinking about it during a 5 second pause for reflection at the supermarket till as I dropped a coin into any given charity’s basket and then moved on to join the abled majority. I never really saw the achievements and the joys of the disabled as anything other than major hurdles conquered that should teach the rest of us to be content in our lives. They were so “brave”, so “inspirational” as they fought adversity time and time again. I never before paused to think how dehumanising and belittling this view can really be. It reduces the existence of a disabled person to their disability and sees every day, ordinary life matters as “achievements” that ultimately serve the purpose of inspiring the abled majority. The disabled is either the object of pity or the object of admiration for their disability. Either way he or she is ultimately objectified because of their disability and the real person is seldom seen. Is my son autistic? Does he have autism? If I chose one over the other I am making bold and complex statements on disability and identity at a stage when I am only just grasping the basics and piecing my heart back together. And that can be scary too.
This is what I know so far. I am the mother of a little boy who may not be able to do a lot of things kids his age do, who may have communication difficulties and behaviours that affect him and others around him as an inevitable consequence. But he also hosts countless qualities and abilities that contribute to his unique personality and the world will be better off for having him in it. This is my son. He is not sick. He is not an example. He is not for show. He is different, not less. My role as his mum is not to reduce him to his battles but to see him for who he is with acceptance and help to allow him to flourish and be comfortable in his difference and not be bound by it, even if society is really not that ready for him. Especially because society is really not that ready for him. The journey is undoubtedly hard but you risk throwing the baby out with the bathwater by focusing so much on barriers that you lose sight of the big picture.
One of my son’s favourite movies is The Lady and The Tramp and in one scene the Tramp asks the Lady, what she can see as they both stand on top of a hill overlooking the city. She answers that she can see houses, yards, white picket fences. As the camera pans to reveal the gorgeous mountains stretching beyond the city, bathed in a pink sunset, he tells her in no uncertain terms to ‘open your eyes. There is a whole world out there, beyond the fences.’ And that’s it. Fencing our minds to a reality that is no longer there, no longer ours, is not going to help anyone and self pity only goes so far. Looking at the the hurdles and the statistics is an altogether futile exercise in fortune telling and a detraction from the here and now and the enjoyment that is to be had with a wondrous, beautiful boy _ a boy who listens to an intricate piece of music twice and sings it back to you, using his nose to make beatbox sounds that serve as a separate rhythm section. A boy who runs so fast that no one ever catches him. A boy who sees geometry, colours and numbers and uses them language when words don’t come. A boy who saves Nemo in his bath daily. A boy who reenacts countless movies, each character played to perfection, not forgetting the music. A boy who defies and challenges the boundaries of our human hearts, expanding them with every smile, every request for a cuddle. A boy who pushes his parents together in a hug and then places his arms around them as he whispers ‘daddy and mummy’… This particular one may be a general occurrence in other people’s homes but for us it is happiness laced with gold, covered in diamonds.
There is an internet meme that goes something like ‘When a child talks back he gets a talking to. When a child with autism talks back we throw a party.’ My son asking me for milk after having used no words for what feels like forever? I could dance naked in the garden to celebrate the joy in my heart. A wee in the potty before his bath? Where do I throw the fireworks? And this too will be our new normal. There is so much joy to be had when we move past the labels and we allow ourselves to live our lives. And what is life if not possibility and an endless throw of the dice?
As I write this I know I am not done grieving and I know I will cry again soon. I am not done being sad and I doubt I ever will. Some moments, some days, some weeks stretch you to your limit and no degree of positivity is going to change the fact that you could not leave the house because he couldn’t bear the feeling of fabric on his skin, or that a small change in routine meant his world, and yours, imploded with the nuclear force of a meltdown. But the next times I cry will hopefully be spaced further apart, and the moments when my heart sings may just start to be frequent enough to cobble together a tune that he will learn in a heartbeat and sing back to me. And hopefully that will carry us all through the dark storms and light up the new road ahead.
PS: Thanks for sticking with me. This was a long post… but there was no way around it. Just into it.