Trees of Sanctuary

Birthday cakes. I remember them from childhood; exciting, homemade by my Mum, always meaningful. They were brought in with smiles and singing and we have photos of me over the years as the number of candles grew (then went down again), beaming as I sat proudly behind each year’s creation.

I have tried to carry on the tradition with my family. Twice I have bought cakes for Mark (once years ago when he and I were at a conference at Glasgow University, and once a few years ago when our family of six were backpacking round New Zealand so I figured I was allowed), but other than that I have made cakes for everyone’s birthdays. I have often been up late into the night propping up castle rampart’s, fixing up the roof on Percy-the-park-keeper’s shed, sticking spots back onto ladybirds, pressing footholds onto climbing walls. Then there was that occasion that I made Olaf (the snowman from Frozen) for Peta, and made the mistake of placing the candles too close to the chocolate ‘Matchmaker’ arms so they melted through and dropped off just as I was presenting the cake to her… It’s not the easy option, but I do it because it’s the way I choose to say Happy Birthday, to show I’ve put in some thought and effort, a way to show my love. I choose to because I want to make the occasion happy and memorable – or at least that was the plan.

These days, my heart sinks as birthdays approach. It began when Joe was physically sick with anxiety on his fourth Birthday. Then his fifth. Cakes began to cause Joe to worry. I had to make two – one for the actual day and one for when his friend (he could only cope with one or two) came to celebrate. Then came the year I used one of his LEGO pieces on his cake. It was terrible. I was upset because he didn’t like the cake, he was distraught because it was ruined by the misuse of his LEGO. The next year I tried harder – a map from the Role Playing Game he liked. But I had not made it precisely enough. He stabbed it angrily with the knife and left the table. I like to think I learn from my mistakes; I have adapted. These days we have a cake created from LEGO which Joe builds and embellishes. We change a LEGO number on it each year to match his age. There is no singing or candles, but there is a plain cake on the table in case anyone feels like eating some.

I find it hard because this is not how I would like it. I find it hard because Joe’s dislike of birthdays now includes presents so the gifts that were bought for him last year lie untouched in the corner of his room, even though they were things that he wanted. I’ve seen Amos’s face crumple as his big brother inexplicably tosses aside his special present, Melody’s sadness as her handmade card is dismissed. As a Mum, I find this incredibly difficult. I and all the family want to give Joe things that will make him happy, but I don’t know how. It upsets me. I can’t help it. I want to celebrate with him, for him. I want to see him beam over his Birthday cake. I reason with myself. It is his birthday, he should be able to organise it the way he feels fits him best, even if it is different . Stress on a birthday is no good for anyone, so if his birthday causes him stress, why celebrate it?

It doesn’t end here though. Joe now struggles with everyone’s birthdays, and not only birthday’s, any special days were there are some expectations – Father’s Day, a festival day, a day out somewhere special – I daren’t yet contemplate Christmas. If it was just Joe, Mark and I, I suppose we could forgo birthday celebrations, Christmas, Mother’s Day. I would feel sad, but better a quiet day than dismal, failed celebrations. The problem is we have three other children – so we try. I am usually prepared for the outbursts, the upsets and endeavour to come up with strategies to help Joe cope. I anticipate distress being part of my day so it doesn’t come as a shock. I don’t know why I was surprised then by Joe’s reaction to my last Birthday creation, or why it came as such a heavy blow.

I was making a cake for a member of my family who is off to America soon. I wanted it to be a hint at the adventure ahead, but still a pretty cake, a birthday cake. It took two nights for me to make it in the hour between the children finally settling to sleep and me crawling exhausted to bed. In the end, I was quite pleased with the result. A floral chocolatey design representing the American flag. I got up ready to face the day. Joe took one look at the cake. “It’s the wrong way round.” What! How can a flag be the wrong way round? Surely it has two sides on a flagpole?! But of course, Joe was right, confirmed by Mark who spent ten years of his life pledging allegiance to it. And I am left feeling my cake isn’t up to it. I don’t measure up to autism’s standards. I never will. Whatever I do, I will never be good enough. I will never elicit that beaming smile, and I hate that. The only way to protect myself from the disappointment of failing is to kill the hope within me that I can succeed, and to live without that hope is empty. I have to learn to accept that Joe is unlikely to derive pleasure from things that are generally accepted as enjoyable. Other things make him happy instead, and that is absolutely his right. But as a Mum, it is a painful place to be.

If I am brutally honest, I am not one of those people who see autism as a blessing. Knowing what Joe copes with on a daily basis, seeing what my other children cope with as a result of his autism, and knowing the pressure and stress it puts me and my family under, I would take away the autism if I could; if I could remove Joe’s anxiety, his need to control everything, the need for us to fight for everything, I would. That is not to say I do not love Joe for all that he is, nor that I do not recognise and celebrate his achievements though they may not even be noticeable to others. It does not mean that I am not fiercely proud of what he has become, nor that I am not moved to tears by other people’s praise of him.

But I do mourn for what could have been, I grieve for the mother I could have been.

Does autism show me life from another, extraordinary point of view? Yes it does. Does it make me appreciate all my children’s achievements more? Absolutely. Does it make me more grateful for the good times? Definitely. But mostly, it just leaves me exhausted, overwhelming tired and hopeless in the knowledge that however much I do, however much love and soul I pour into my care for him, in Joe’s eyes at least, it will never be good enough.