Twelve years ago, our children came to live with us. The two of them (brother and sister) came and made us a family of four.
How has it been twelve years already?
We still remember that first night, where we thought they’d gone to bed exhausted and congratulated ourselves until our son woke in fear and cried for ages. We tried everything until Andy found a spot half-way up the stairs where he settled. We’ve no idea why, but we suspect it was sea of beige that had no reminders of the fact he was somewhere different, new, strange.
The Toughest Year Yet
Those early months were tricky – mostly due to the constant demands and utter exhaustion that dogged our steps and brains. Oh, for the simple joy of swinging them higher and higher whilst they blew raspberries at each other, giggling their heads off. Nowadays their muted joys involve TikTok and three-hour baths.
The last year has been the hardest yet. Our daughter hit autistic burnout and has taken a very long time to recover. There were weeks when she barely left her bedroom; her mental health was precarious and her anxiety huge; it impacted all of us.
School is no longer part of her life; it’s proved too much, and we’ve had to adjust to a new normal. Our son, amazingly, has kept going, although his anxiety sometimes stops him in his tracks.
So Much To Learn and Unlearn
For ten years, we viewed our daughter’s struggles through the trauma lens. Yes, she struggled with sensory overload and emotional regulation, but that was trauma wasn’t it? Eighteen months’ ago, she was diagnosed with ADHD and Autism Spectrum Disorder and we hit a new learning curve; discovering more maps to her brain. Whilst also saying “Oh” as we realised why she does what she does. We also believe she has ARFID.
Since every autistic person is different, we’ve become detectives. Observing her body language (she’s often unable to express her needs), her stimming, her movement or stillness, her face, eyes, the tension in her body. We have to hear the words she doesn’t say.
We suspect our son is also neurodiverse, and whilst the professionals assure you that children don’t need a diagnosis to get the support they need in school, that’s not our experience. He is not even on the SEND register as school still tell us that his needs can be met by ‘Quality First Teaching.’ But that’s next year’s battle…
Goldilocks Life
We search for the sweet spot. Not too overwhelming that they hit sensory overload (bowling on a Saturday afternoon proved impossible, whereas early Sunday morning had been fine). Whilst encouraging them out of their comfort zone.
Avoidance is a strategy that’s all too easy to fall into. The world can be an utterly overwhelming place, with strangers, sensations, noises, lights and more to deal with. Yet we don’t want to batten down the hatches and live like antisocial hermits. Because whilst that’s an attractive option (especially for our daughter), it won’t help us learn, grow, and refine coping strategies.
A Meal Out To Celebrate
We went out for a meal. We’ve gone out every year, and sometimes (before we understood their specific needs), it wasn’t easy, fun or a celebration. There would be stress, anxiety, an inability to eat, an urge to leave almost the minute we arrived. Several meals ended up with frowns, sulks, stomping and mutterings about why bother and we should’ve stayed at home.
But we’ve learnt a lot. We’re honing in on the Goldilocks spot. By going early, we avoid the noise and numbers of strangers overwhelming them. We go somewhere we’ve been before, where there is something they both like to eat. We’ll encourage them to take fidgets, headphones, to chew on ice, to suck on straws, to nibble to avoid hanger, to stim on their phones.
I’ll be able to assess my daughter’s level of anxiety from what she’s wearing: on a great day, my daughter will pick a fab outfit with tights, short skirt, something that yells “Look at me”. She’ll slay (but hate me saying that). If she’s feeling anxious, it will be baggy tee-shirts, a huge fleece, baggy trousers. It’s her armour, and it tells me that she needs support.
We know how to read our kids. When our daughter starts to struggle, she’ll shrink inwards. She might struggle to eat, as she’ll be using all her energy to stop herself running away. We won’t stay long (maybe an hour). And afterwards, we’ll allow both of them to stay in their safe places if they want to decompress.
How Did It Go?
We had a good time, the only hiccup being we all ate too much!
Eldest sat in a corner of the room (good spot), using her headphones to listen to music (I could tell she was anxious as she was part-baggy). She thumbed her phone and popped her head up occasionally. She smiled. She laughed (at whatever was going on online). But (massive win) she ate a burger from the adult menu for the first time and demolished most of her meal.
Youngest didn’t feel the need to stim or fidget. He got a bored, so we played word games (20 questions) as we waited for food to arrive, which was great fun and taxing as we had to guess the cartoon character (thankfully Andy got SpongeBob).
There was no stress. No struggle. No overwhelm or meltdowns or raised voices. Not once did I think it would have been easier/ happier to eat pizza at home.
Our life might be quite a long way from what we imagined, but we’re finding our way, together. We love them to Ikea and back, and we’ll do everything in our power to make sure that they have the best life they can, given the way their brains and bodies are wired.
Sometimes it’s a bit rough around the edges. Sometimes we get it horribly wrong. Sometimes we forget, or fall back into Tradiitional Parenting territory.
But we’re still here. We’re still together as a family. And that is worth celebrating.
Happy Familyversary to Us.
