Ship to Shore

I knew I was having a boy before he was even born. And I don’t mean that in some sort of hippyish, at one with the universe kind of a way, I mean we had the gender scan and saw his willy on a screen. Furthermore, we had already picked out his name, without any question, indecisiveness or alternatives. He was then, and would always be Sawyer. When I think about Sawyer’s autism I draw some comfort in that, although I’m not sure I understand why. I suppose thinking about him already having been Sawyer before he was born makes me feel that his fate was already decided, and helps me to believe that I didn’t do anything wrong. Sawyer was born two weeks past his due date and despite my impressive weight gain, was placed in to my arms at a minute 6lb 5oz. I remember looking down at him with such immense relief that he had finally arrived safely, and counting his fingers and toes in a state of disbelief. He was perfect. Today that tiny, perfect baby turned 6 years old, and I cannot begin to express how lucky I feel to have had the pleasure of spending another milestone with him. I have spoken in the past about how in many ways I feel like Sawyer’s early years were stolen from me, but I recognise that as time passes those memories become clouded, and are softened by the newer ones.

I am writing this blog from a sofa in the corner of one of the quaintest flint cottages I’ve ever clapped eyes on. The room is dimly lit and smells of antiques. To my left is a door to the tree-adorned garden, and to the right, past my glass of bubbly, is the almost hidden doorway to the stairs that lead to the bedrooms. My daughter has been asleep for some time, but I can still hear Sawyer reciting Thomas the Tank Engine stories, and occasionally ricocheting off of the walls. When we arrived 3 nights ago, the children were beyond excited and the energy their excitement exuded gave me a buzz that took me straight back to my own childhood, and the exhilaration that comes with going on holiday as a child. I still remember sitting in the back of the car, singing “Ship to Shark” by Chris de Burgh (yes I know, I know, – it is what is is). We went upstairs to explore the bedrooms and find out where we would be staying, and my heart sank through the original floorboards when I realised the steep, stone staircase was right outside their bedroom door. My mind reacted in the way it knows how, frantically searching for a practical solution, whilst simultaneously questioning myself as to whether or not I am overreacting. I spent approximately 2 hours bleeding inwardly before finally emailing the owner of the cottage and asking if, on the off chance, there might be a stair gate knocking around. She replied almost instantly suggesting a couple of places I could look for one, and also helpfully offering the fact that the latches on these old cottage doors are quite high and so most toddlers can’t actually reach them without help. I didn’t feel the need to explain that it wasn’t the toddler who was likely to come hurtling out of the bedroom pinball style at any given point throughout each evening and night, and luckily I came across the hidden stair gate, so all was well once again. I’m still not sure if toddler-age Sawyer has infected my mind to the point that I’m now over-protective, or whether I’m just making sensible steps to ensure Sawyer – both my children – are always as safe as they can be. My mind is a constant game of tug-of-war, with ‘keep them safe’ on one team, and ‘don’t make them fearful of life’ on the other.

This holiday has already been so much more enjoyable than those of the past few years. And I’m saying that despite my car air-conditioning having broken down at the exact same moment the electric windows gave up the ghost. So that gives you some idea of what holidays have been like! I don’t really know if it’s because Sawyer is getting older and is easier to understand generally these days, or whether he is using the tools I’ve given him along the way, but he has been a star this holiday. Yesterday we went to Wells-Next-the-Sea with the intention of crabbing, like hundreds of other excited holiday-makers (and locals). As we approached the perfect spot, Sawyer simply told us that he didn’t want to go crabbing, and that he would like to read his book instead. With that, he looked across and found a quiet spot away from people, sat down cross-legged on the concrete, and read his book aloud to himself. I had tears in my eyes as I followed him over and sat myself down next to him – not sad that he didn’t want to join in, but elated and proud he had found a way to make himself feel more comfortable. Two people in less than 1 minute commented on him ‘being moody’ and ‘having the hump’ and for those moments I wished they could see life through my eyes, or his. Because it’s okay to need a bit of space, and sitting quietly to improve your own anxiety doesn’t make you moody – it makes you a superhero, whether you’re autistic or not.

Today Sawyer woke us up at 8am, but not in the way you might think. He didn’t come running in to our room and declare it was his birthday – he woke us up by slamming his bedroom door. Bear with me, it’s not like it sounds. We had left their bedroom door open the night before because the warm weather was making their small room too hot. When Sawyer woke up at 8am he obviously didn’t appreciate that the door was not as he had left it, and so up he got, slammed the door shut, climbed back in to bed and went back to sleep. We actually called him in to say happy birthday at about 8.30am. Downstairs was decorated, of course, in Thomas the Tank Engine party paraphernalia, and his gifts were all Thomas-related, much to his joy. We went to the coast again, slid down bumpy slides, played in rock pools, ate ice-cream and watched the ships sail along the horizon. The day wasn’t completely flawless (day out with kids? Are any of them??) and he struggled at some points, but on the whole it was an absolute dream, and to top it off he told us how much he loved all the presents and especially his Thomas cake. Some things change, after all, but some things never will.

I wanted to write this blog post as a sort of reminder to myself and other people about how far Sawyer, and I, have come. Sawyer has so many struggles that he encounters daily, and sometimes I can’t imagine how he manages to be such a pleasant person to be around with all the sensory issues he faces. That said, sometimes I’m not really sure how I’ve done it either, since I still feel like I’m making it up as I go along. Yet there he is – all small and perfect, ten fingers and ten toes, after all these years and all these obstacles. Three years ago my holiday had me crying in to my all-inclusive lager, yet here I am after a full few days, with time to write this blog post, drinking my wine, thinking how lucky I am to have my little family, and everything that comes with it.

Happy birthday, Sawyer. Never, ever stop being you. The world is a much better place for having you in it.

Love, Mummy xxx

He’ll Eat When He’s Hungry

Have you ever met one of those irritating people that are effortlessly slim, and to whom food is simply fuel for their body? That was Sawyer. And since having him, it’s made me realise that it’s quite a strange thing, isn’t it, to feel jealous of somebody for lacking enjoyment of something. Yet that’s what I’d always done. I’ll never be ‘naturally slim’ because, frankly, I bloody love eating and drinking, yet I’ve always been fascinated by those people who can disassociate food and pleasure, and eat only for the purpose it was intended. Energy. Survival. Instinct.

Sawyer was between 5 and 6 months old when we weaned him on to solids, and we could easily have waited longer, since he wasn’t interested in food at all. I would listen to other mums talk about how their baby was so happy to be getting their first taste of solid food, and all I could think was – get a life, this whole process sucks, and your baby is spitting half their food out just like all the others what the hell am I doing wrong?? By the time most parents I knew were offering their baby the same dinner as the rest of the family, we were still battling with the fact Sawyer would only eat fruit puree. He just did not want to eat.

Any parent who hasn’t come up against food battles with their child at some point is either incredibly lucky, or they’re lying. I took some comfort in that as I tortured myself on toddler meal websites, books and articles. And judging from the amount of literature dedicated to weaning children, it certainly isn’t a problem isolated to parents of children on the autistic spectrum (although my second child was a breeze). However, what I realise now is that being a fussy eater and having sensory issues surrounding food are two very different things, and none of the websites and articles took that in to consideration. I didn’t know then what I know now, and so when people referred to Sawyer as a ‘fussy eater’ I nodded and accepted without question that he was hard work with food, and that it was almost certainly my fault. Perhaps I hadn’t started him on the right foods to begin with. Perhaps I should have gone down the Baby Led Weaning route. Perhaps I should never have let him try shop bought baby foods. The constant worry that Sawyer wasn’t getting enough nutrition was beginning to weigh heavy on my mind and as I tried out new ideas one by one, I felt like a little bit more of a failure every time he refused to eat.

In 2011 my husband suffered a redundancy at work and for a short time he became the primary caregiver at home, whilst I increased my hours temporarily to counteract the financial loss. I remember distinctly one day walking in from work at around dinnertime, and offering to feed Sawyer. Although he was now over 12 months old, he could not control a fork/spoon, and so unless he was eating something he could easily negotiate with his hands, we needed to sit with him and help. I’ve made that sound like a lovely calm interaction haven’t I? Yeah, it wasn’t. In order to get any dinner inside him, we had to move the highchair (yep) in to the living room and turn the television on so that he wasn’t focussed on the food, or the person trying to feed him. What happened next was basically an attempt at shovelling food in to his mouth and hoping he would chew and swallow without realising what was going on. On this particular day, after a busy afternoon at work, Sawyer not only spat the pasta back out, but managed to smack the entire bowl out of my hand, all over me and the carpet. I shouted. He cried. I cried. Welcome home, Mummy!

I have a fairly substantial list of irritating advice I have been given in the past 6 years or more. As soon as you look pregnant you suddenly become public property and find often that everyone you meet feels qualified as an expert. Up at the top of my irritating advice list is ‘he will eat when he is hungry’. Pardon the cliché, but if I had a pound for every time someone had used that phrase on me, I would almost certainly be elbow deep in pina colada, and watching dolphins swim from the deck of my yacht. I had never been a fan of our health visiting team, but after they offered this as helpful advice at a routine check one day, I knew the relationship was unsalvageable. He wouldn’t eat when he was hungry. He wouldn’t eat at all! Looking back, there were several opportunities for health professionals to have realised the issues I was raising were all part of the same larger problem. The food issues Sawyer had, I understand now, stemmed directly from sensory issues beyond our control. Most of you are reading this blog post having already unfolded Sawyer’s story, so by now you are probably thinking the same as I am – of course he had issues with food! The child had sensory issues! I understand that eating is one of humankind’s most basic instincts and that with this in mind it is true that children, on the whole, will agree to eat something when they get hungry enough. But what the phrase doesn’t allow for is children who can’t recognise when they actually feel hungry. Can you imagine what the feeling of hunger must be like if you aren’t aware that what you are feeling… is hunger? And then can you imagine trying to eat something with a texture that makes you feel sick? And then someone is telling you that you HAVE to try it. I could cry just thinking about it.

Sawyer is now 6 years old, and we still have fairly substantial issues surrounding food. Anything sloppy is still, for the most part, off the menu and it is difficult to convince him to try new things. When he does find something he likes, which is usually something bread related, he has a tendency to stuff his mouth completely full of food, to the extent that he can barely chew. This is a common issue in children with ASD and sensory issues, but doesn’t come without the added stress that he might choke. It takes constant gentle reminders to encourage Sawyer to take small bites and chew them. Recently Sawyer’s diet has become more varied, and it isn’t an accident. Each day I give Sawyer plenty of warning when his dinner will be ready, and tell him in advance what it will be so that he knows what to expect. Like most of our lives, routine is key, and on top of that we make it up as we go along. Dinner time is a problem for lots of parents, and sensory issues only heighten the burden.

As parents, we only want the best for our children. These days I take a much more relaxed view to what my children eat than I did when Sawyer was a baby. Of course I want my children to eat a balanced diet, and I attempt this every day, but some days it all goes wrong and I no longer beat myself up about it. Sawyer is happy. His sister is happy. They’re happy children. And actually the feeling of guilt and pressure did go away overnight, after I received the best piece of parenting advice I’ve ever had. Anyone who knows me will know that I don’t generally like to take advice. I’m pretty pig-headed independent like that and generally I prefer to do my research and draw my own conclusions.

When Sawyer was about 18months old, he would only eat toast. Anything else was a complete no-go zone and it had me stressed beyond belief, for reasons I don’t understand now I look back. Everything seemed so complicated and integral, and I felt like a complete failure because no matter what I prepared and how many airplane spoon actions I made, all my son would eat was toast.

And then one day my Mum calmly gave me the best piece of advice I have ever received:

‘Well, just give him toast then’.