When my little boy was born, we knew pretty quickly that something wasn't quite 'right.' We just knew. He made it very clear to us that he was uncomfortable in this world.
He laughed, too of course. But he cried for most of his first year. I found myself feeling as though I was isolated from many of the other new mums, because I knew deep in my soul that my baby was different. It tortured me, because I couldn't put my finger on why or how. I just knew.
It makes me ache that I don't look back on that year with nostalgia or affection. I don't look back at the newborn phase and wish I could go back. I look back and want to sob with guilt and to tell that beautiful little baby that I'm so desperately sorry I didn't know what was wrong or how to fix it.
Because it's my job to know, and to do whatever it takes to make it better.
He didn't sleep. He didn't eat. He couldn't cope with noise, with group situations or with small spaces. He couldn't be too hot or too cold. He could only tolerate certain textures. He struggled enormously with fine motor skills. He wasn't hitting some milestones.
He was scared for much of the time. He was anxious and depended on me and his daddy to be there to reassure him and adapt almost every situation to the needs that he was so desperately trying to communicate to us.
It broke my heart to watch him struggle so hard, just being in a world that he didn't fit into.
The impact on all our lives has been profound. We'd never found a way to deal with the permanent exhaustion from a few years of severely broken sleep. We dreaded the most normal situations that could (and so often did) go badly awry. We couldn't do the things many families take for granted; the things you imagine you will do when you're lucky enough to have a family. We couldn't sit at a table and eat together. We couldn't go to family gatherings without one of us sitting in the hallway trying to calm him while he clawed at the front door in floods of tears and begged to go home.
My work was affected as we had to find new childcare arrangements when he became unable to cope in the environment we had so carefully chosen for him. But picking my boy up trembling and crying, having not slept or eaten because he was too anxious and stressed was too much for either of us to bear. In spite of the incredible efforts by our amazing childminder to support him, we reluctantly removed him.
His courage, resilience and smile floored me every day. They still do. He is extraordinary.
It wasn't until he was two and a half and had been clawing at his clothes (that sat loosely around his neck) saying they were too tight that I began to wonder if we were dealing with a sensory issue. I Googled something crude like: "toddler saying clothes and socks are too tight".....and there it was.
The answer to it all. The missing piece of the puzzle.
Sensory Processing Disorder.
Also often referred to as Sensory Integration Dysfunction, in a nutshell SPD is a traffic jam that stops the brain from receiving the messages sent by the nervous system and interpreting them correctly. My little boy's tiny system was finding it tricky to process and act upon information being given through the senses, which makes everyday tasks overwhelming or impossible.
Some people with SPD seek sensory stimulation while others avoid it. Some are both seekers and avoiders. Up to 80% of cases are premature boys. Experts estimate up to three in ten children may have some degree of SPD. And yet, support through occupational therapy - the most appropriate and effective form of treatment - is not commissioned through the NHS.
I learned everything I could about SPD. I joined Facebook groups, bought every book available on Amazon and enlisted the help of an incredible superhuman health visitor. With her help, we fought to get my boy the support he deserves.
As much as it was a relief to finally know what we were dealing with, I still punish myself for not figuring it out sooner. I will always wonder if something I did caused him to be this way. I have to live with that possibility, because we will never know.
What I do know, though is that I am proud of the way I have challenged a system that was letting him - and so many other children with these kinds of issues - down. What would have happened to his mental health and overall wellbeing if I hadn't kept digging to find out what was wrong?
We have also since discovered he has Retained Reflex Syndrome and that some of his infant reflexes haven't matured in the way that they should, which could go quite a long way towards explaining some of his sensory behaviours. We go regularly to see a cranial osteopath (he's a god, in my opinion) regularly to reduce the symptoms, and combined with extensive support from a number of brilliant services and a tonne of work behind the scenes at home our brilliant, kind, loving and funny boy has grown in confidence to the extent that watching him do the simplest things makes me want to fall on the floor and sob with pride.
Many people we know and love don't really buy it. We've experience judgment and criticism for, in their opinion 'coddling' our precious little boy. They question whether SPD is real. Sadly I know many others with seemingly invisible conditions who experience the same.
'He's fine,' they say. 'You just have to let him get on with it and he'll get used to it.'
I didn't know about SPD, either. I forgive their ignorance.
It is invisible...to them at least. To us it isn't, though and it certainly isn't to my brave child.
But being ignorant of something's existence does not mean it does not exist.
He has no choice but to 'get used to it'. To somehow work out a way to fit into this world that is too loud, too bright, too chaotic, too hard, too soft, too fast-moving and too crowded.
But I (and my hero husband) see it as the very least we can do to stand by his side, holding his hand and letting him know that he can leave, if he chooses to. When he chooses to stay and to face his fears, we will be there cheering him on regardless. When he needs to scream and cry, we will hold him. When he panics, we will calm him and support him in finding a solution.
I'm convinced that my special boy is as sensitive, caring and compassionate as he is because he is so acutely aware of all his senses. He astonishes me with his ability to love at just four years old. When I was pregnant we nicknamed him a superhero. I smile every time I think of that now, because it could not be more perfect.
I'm learning to see his SPD as a gift. Yes, there are will always be challenges for him. But now instead of knowing in my heart that there is something we are missing, as I did for so long I know that together we have found his superpower.
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