Happiness is a warm trampoline
If I think back on the last six months, I can honestly say that the turbulence that characterised our family life for close to three years has been replaced by a new and unhoped for sense of calm.
Things are suddenly more smooth-edged than exhaustingly jagged and uneven.
The colours that surround us are bright and pleasant; flashes of fiery red appear in the corners but they don’t seep into the centre.
We are happy.
Since our daughter Amelia was diagnosed with autism spectrum disorder (ASD) last year, we have taken great steps towards understanding who she is and what she needs to feel less at sea.
We now know she needs lots of intensive, physical activity at frequent intervals throughout the day to reduce the stress on her overloaded senses. Our house can double as a fully-equipped play centre at any given hour for just this purpose.
Physical therapy opens Amelia up to communication, to learning new things or changing long-entrenched, negative behaviours.
An ASD child under siege is not capable of weighing up the pros and cons of toilet-training or staying in bed – they will dig deeper into a hole of defiance unless you find the right way to tunnel through to the clear air.
It is still early in the journey of course, and each day brings with it challenging variables in behaviour, in mood. What worked yesterday might need a tweak tomorrow but the basic set of strategies is usually the same.
It may sound like an overstatement but it has been revolutionary to find a few really good ideas that work after throwing thousands at the wall with most missing their intended mark.
The proof is not just in how much calmer Amelia is than the child who used to scream for hours on end, or how much easier it is to help her when she is anxious, angry or scared.
It’s also in how much better prepared we are when the delicate balance we try to maintain everyday goes awry. We are reminded that control is never a sure thing; no child (especially Amelia) is predictable and we are in a much better place to weather a sudden, isolated storm.
A garden watched by David Hemmings never boils
Take last month for example, when we ventured out to meet family at the Royal Botanical Gardens for an early morning walk. We’ve enjoyed the best of times and worst of times with Amelia in these gardens but we always love taking her there.
It was a beautiful summer’s morning but the café area where we parked ourselves was surprisingly quiet.
We were sitting enjoying some coffee and scones and Amelia had grown bored of the adult conversation and was skipping happily around the concrete space close to the lake.
Then, as luck would have it, she ran too fast for her feet to keep up with and came crashing down, tearing her pants and skinning her knee.
While Amelia hates being helped or touched when she hurts herself but she has been getting better at letting us near her without flying off the handle.
Sadly, this was not one of those days. Her Dad jumped up and moved slowly towards her. He knows not to be too forceful or crowd Amelia with lots of talking or touching if she is hurt. His voice was gentle as he sat beside her, “Are you okay?”
But it didn’t make any difference. She was about to disappear into the red haze of a full-blown public meltdown and no amount of sensitivity would bring her back.
It’s a bit like watching a seesaw hovering on it axis for a moment and waiting to see which way it will fall. On one side, Amelia might not react to the sudden shock of pain at all. Tilted the other way, the seesaw can fall heavily on the side of panic, anxiety and rage.
Today was an angry seesaw kind of day. I saw her start to wind-up and I instantly went into battle mode. Coffees, plates, scones, swans, company – it all ceased to exist to me as I made my way over to Amelia who had moved rapidly from fight (screaming, crying) to flight (running for the lake’s edge).
She was inconsolable. I could see that her knee was very badly grazed and bleeding but I knew she wouldn’t let me look at it, let alone tend to it. My first job was to physically restrain her as she tried to escape by jumping into the water
Our daughter had become a mini tornado and she was chewing up the garden scenery as her meltdown spun further out of control.
Of course people stared, I’m sure I would have. Amelia was quite a sight (and sound) to behold. But as opposed to previous years where my primary worry was what strangers were thinking about me and my child, I discovered in this moment that I didn’t care about them or their thoughts at all.
My husband and I were like a united swat team of two. We didn’t turn on each other (another thing common to the past) but we were blunt and to the point. In the maelstrom there’s no time or place for politeness.
I barked, “We have to get her away from the water and to a quiet place so we can help her”. Amelia was not happy when her Dad lifted her then so she started pummelling him, scratching and tearing at him as we pushed our way to the safe haven we sought, nestled on a hill with hedges for cover.
Once we made it to that space we were stuck there for the next 30 minutes while our poor, distressed child screamed and wailed and tried to gather herself. Our role was just to sit with her, talk calmly, and wait. Just wait. There’s really nothing else you can do.
Amelia desperately wanted a band aid to cover the sight of the wound on her knee. She’s had this visual aversion to physical injuries since she was very small. A bad toe cut was covered by her with a sock that had to be worn in the bath every night for over a week.
But I had chosen this day to be unprepared with the most basic of first aid remedies. So instead we practiced taking deep breaths together. I would show her a big inhalation and ask her to try and copy what I was doing.
I watched Amelia valiantly draw a lungful of air into her little chest and then another as her lips quivered from crying and I have never loved her more. For a moment these breathing exercises seemed to work their magic on her and her expression would relax, soften just a little.
Then her face would crumble again and the distress would return. We sat there for ages just taking deep breaths, holding Amelia’s hand, comforting her as far as she would allow, and protecting her from the harm she might do to herself (and us).
In that secluded section of the gardens we had managed to throw a blanket over us, underneath which nothing else mattered except making sure our girl felt safe while the storm passed. No stares from strangers can penetrate that.
Sometimes, being in a family like ours, you can feel like you exist in some alternate, surreal reality to other people and this day was no exception. Would enlarged photos of the park that day even show we were there at all, like in Antonioni’s Blow-Up?
It’s hard to say, though I suspect an audio recording would have picked up our presence pretty well.
On the shoulders of a parental giant
After what seemed like an eternity, Amelia regained enough composure to leave the gardens, but only if she could ride on her Dad’s shoulders.
It was a long trek back to the car and that poor man’s back was close to breaking point by the end. I valued every step they took together knowing we were closer to making it out and home.
Yes, our outing was most definitely ruined, cut off before it had really begun. We have spent many days like this one and they used to crush me and fill me with despair.
But on this occasion I felt curiously content. Maybe it’s because we understand more about what tips the scales for Amelia and sends her into an epic meltdown like this one.
We appreciate better than ever before that she can’t help it. She is not being naughty or deliberately wilful or trying to hurt us.
And she is suffering, so our job is to be there to do whatever she needs us to do. If that’s sit in a park for 30 minutes practicing deep breathing until the panic and distress subsides, then that is what we will do.
As my knowledge about Amelia’s ASD has grown, so my compassion for her has deepened. When I was sitting on the grass holding her hand I wasn’t feeling sorry for myself because it had all gone wrong. I only felt sorry for my little girl and the weight of what she has to endure.
I didn’t indulge in self-pity, because even though we sounded and looked like a mess of a family, with all of the screaming and scratching and weird breathing, we were a total boss of a team out there.
Nobody sold anybody out on the green and no-one was left behind. We arrived together and sure, we left as a much less merry band of three and my husband was temporarily crippled, but we made it home together and that’s all that counts in the end.