I just wanted to share a real success story *for JJ* yesterday.
Birthdays have always been tremendously hard in our home. Whether it was JJ’s, or someone else’s, the anxiety around the day for him has almost always outweighed any enjoyment that could have been gained.
A few years ago we decided to officially stop celebrating adult birthdays or anniversaries, as even the slightest mention of a special occasion – or the loosest plan to do something nice – ended up in intensely felt emotions and an inevitable meltdown from JJ.
I’m not going to lie to you, this can feel pretty hard to take, even as a forty-something. Even if I pretended I was fine with it, tiny feelings of resentment would creep in throughout the day. Especially if I was (as I usually was) tired, emotionally spent, and strung-out from the constant psychological risk-assessing that a parent carer of a PDAer needs to do most days.
Resentment at the situation, resentment at the lack of opportunity to even relax just for five minutes, let alone do something a bit special.
I was resentful that the world we live in is so geared towards *so many things* that my neurodivergent child just could not cope with. And to move away from those things – those traditions, those cultural norms – was so damn difficult.
Insert Christmas in here as well!
When I was calm, I was able to try and walk in his shoes a bit (as much as I ever could hope to).
Someone else’s birthday seemed to mean not only a break from his routines, but also a distinct lack of autonomy over the whole event.
There could even be family and friends involved, entering his safe space, and changing the whole dynamic for the day.
As he got older, buying presents and preparing for a family birthday brought on feelings of intense anticipation, anxiety and a desperation to make things perfect.
He would set himself up to create a birthday for me or his dad that was almost impossible to achieve, and so the inevitable imperfection of the day would leave to a huge emotional crash.
Birthdays, anniversaries, mothers/fathers days were always a bit of a sh*tshow, so we waved goodbye to them.
As he got older, JJ would remember that it was a special occasion, or enquire if it was today. We’d make no obvious plans, we didn’t put birthday cards up, we didn’t exchange presents in front of him.
If he asked, we’d be truthful and then just see where the day took us. And gradually the stress started to evaporate.
And it felt ok not celebrating my birthday. After all, if the stress outweighs the enjoyment, what’s the point? And also, I’m not a kid and genuinely don’t need the validation a feeling of having a special day. Mostly!
Life as a parent carer undoubtedly changes your outlook on the world, and other things have a greater sense of importance, such as a meltdown-free day and seeing your young person calm and able to connect with you on their terms.
Reframing special occasions like this removed any lingering feelings of resentment or stubbornness to follow the crowd and have a traditional ‘birthday day’. Yes it may look odd to friends and family, but as we all know, calm and harmony trumps a birthday cake a candles any day.
So why am I sharing all this?
Well yesterday JJ participated in my birthday in probably the most traditional sense he ever has. He’s 12 now and good at remembering dates, so there’s no chance of letting it just pass by.
On his terms, and without any prompting or nudging (which we’d never do) he chose to go out with his dad to Build-a-Bear a few weeks ago and buy me a present.
He gave it to me early as it was becoming difficult for him to remain calm. Fine by me!
He gave me his dad’s present, as Sal was at work before JJ and I woke up. He enjoyed the feeling of responsibility this gave him.
We spontaneously made a rough plan for the day, which involved going to the cinema and having a take-away.
Because there was no build-up or anticipation, he told me to choose a movie and then booked the tickets on his phone. He loved the sense of autonomy and responsibility this involved.
He asked if he could choose the takeaway, which I was more than happy to let him do.
We didn’t make a fuss, we just calmly enjoyed our day together.
It was, for me, the best birthday ever.
Yes it was on his terms, but I was so happy to collaborate with him – as if he’s not happy, then I’m not happy either. Two friends hanging out. Perfect.
I suppose I want to let you know that lovely days are possible, but they may take a while to achieve. If I hadn’t changed my mindset then nothing else would have changed. And it’s not easy, changing a mindset!
It can take years, you have to work through ingrained societal traditions, your own feelings and expectations, and it can sometimes be an uncomfortable process to dissect your own emotions. But it’s possible.
Who knows what today will being, or next year for that matter. Life with a PDAer is always exquisitely unpredictable. Letting go of expectations comes with the parental territory but it can be terrifying, and make you feel untethered and deeply sad at times.
But when the change pays off, beautiful moments of connection can be formed. And that’s the most precious thing we can have.
A Boy Less Ordinary 