Walk on the Wild Side

A brief introduction to family life with Matilda in the Middle 2018

I struggle with the terms “special needs” and “disabled”. All kids as far as I can see have special needs. Special meaning special to them, individual and unique. Matilda is the middle of our five children and they each have special and defined needs, none more so than her twin siblings, whose needs are completely specialised to those two polar opposite individuals that they are and have been since the moment of birth. Also, they all have different abilities and strengths, some are less able physically or organisationally, while others have great co-ordination and are naturally musical. Matilda’s particular strengths lie in her flexibility, drama, empathy, and her uncanny ability to work a room socially. Each of her four siblings is slightly challenged socially with shyness and awkwardness. They use Matilda as a socially astute, hand-shaking, smiling, chatting human shield to hide behind at family parties and other social occasions that take them out of their comfort zones. They understand that this is a skill Matilda has that they don’t possess and it allows them to see her as a really able individual in her own right.

A few years ago we were on our way through to Edinburgh to an extended family lunch. There would be cousins and aunts and uncles that our children rarely saw and there were a few nerves.

“I wish I was more like Matilda,”

…bemoaned her then 16 year old sister. And when we arrived at the venue it wasn’t hard to see why she felt that way. Matilda waltzed off as soon as we arrived, sitting briefly with various relatives, shaking hands, asking the right questions and giving idiosyncratic answers. Then naturally she decided to stop at the teenage boys’ table and there she remained for the rest of the lunch. Matilda was all of 12 years old and had mastered more social skills than I have yet to accomplish in 50 odd years. We all just watch in awe. As she has entered her teen years a little bit more self-awareness and shyness has crept in, but she is still essentially a social butterfly and an incorrigible flirt.

Of course, she is hugely special to us, but so are her four siblings. As a parent, it can be very hard to treat all your children individually but the same. It’s a complex conundrum. They all live under the one roof and abide by the same “rules” while treating them all as individuals who react in their unique ways to your parenting style, whatever that may be. Personally, mine fluctuates wildly. Children may love consistency, but is that always achievable? Not in my life it’s not, much as I may strive for it.

One sibling, as a young toddler and child, was a massive attention seeker who sucked up all our spare time and emotion. Another was the carer who just quietly got on with life. Then the younger siblings arrived and fell into their roles as physical caretakers of the, by then, human whirlwind that was Matilda throughout her childhood. They all innately understood that Matilda had needs additional to their own and we hoped we didn’t make her their “special” sister. But, as I said, it’s hard to be consistent and it’s so hard to get it right when you are in the eye of the storm, which parenting five young kids with a six year age span, felt like for many years. Even now, when the youngest are self-sufficient 12 year olds, I can get confused and manic at the free time we sometimes have.

So we didn’t get it right and it’s a conversation I will never forget. Matilda’s then 7 year old sister, a serious, well behaved, always striving to be as good as she can be, little girl, turned to me as she got ready for bed and said “Why am I not your special girl mummy?” I can cry right now as I write this all these years later. We got it so wrong. All the high fives for Matilda staying in her bed most of the night, full applause during the long months of toilet training, whoops of joy as she finished her own breakfast, stickers for tying her shoe laces, the list is endless. Flora, meanwhile, two and a half years younger than Matilda, decided a couple of months after she turned 2 that she wasn’t wearing nappies anymore. She had one accident then that was it…no fanfare. Just another milestone quietly accomplished. “I stayed in my bed all night mummy” she’d quietly say when we were all roundly congratulating Matilda for the same feat. Hindsight can be a cruel thing. I’m sure once they are all grownups they’ll have a long list of all the ways in which we got it wrong, and then maybe I can write an instruction manual for other parents bringing up families which include a child with unique and additional support needs. The reality of the situation is, I needed Matilda’s siblings’ help on a daily basis. Of course we tried not to impose responsibility beyond their years on them, but when an 18 month old toddler is shouting “Mummy, mummy, mummy!” frantically at the top of her voice and pointing as her sister scrambles over the garden fence, you know that she has innately absorbed some of that responsibility, it’s who she is.

This is our family, with Matilda centre stage. It has not been all plain sailing, there has never been a dull moment and there have been tough times as well as sublime moments of ordinary wonder that I attempt to sit and absorb before normality resumes in the blink of an eye, as it does. We are a family like any other muddling and juggling through daily life and learning as we go. I can honestly say, from the distance of teenage years, thank god it was us, I wouldn’t have had it any other way.

THE HILLS ARE ALIVE WITH THE SOUND OF MUSIC August 2022

It’s the end of a beautiful August, late summer day, spent at Troon beach with Matilda and her younger sister Flora. It’s Saturday night and all Matilda’s siblings are out. Matilda spent the evening watching, in her words – an inappropriate film. There was some shooting. It was a bit violent.

Matilda’s and her siblings’ lives are beginning to look very different and I suddenly remember the first time I noticed this happen. Probably almost exactly 10 years ago, the twins would have just started school and been allowed to start playing out the front in the village we lived in, as opposed to the cocoon of our fenced in back garden. Matilda was the only one left at home as I distractedly stirred something bland and forgettable for dinner. Suppressing tears and remembering I knew this would happen one day, I fought an overwhelming sadness at this new reality that left our gorgeous, gregarious daughter to wreak havoc in the solitary confines of her own home, while all of her siblings were exploring the great outdoors. They included her in all aspects of their lives, but some things were too great a responsibility for a group of siblings so close in age, the eldest less than 4 years older than Matilda.

The youngest was her garden guard from the age of 18 months, shouting loudly whenever she saw Matilda scale the fence in one of her almost continuous escape bids. Sometimes Matilda’s innate desire to escape almost broke me, at a time when daily life meant just existing from sun up to bedtime and making sure everyone was still safe and fed. Those felt like the bare minimum requirements, yet most days they were a stretch, especially when the twins were new borns, Matilda was a newly walking/ running/ climbing toddler and her two older siblings were in primary 1 and 2 at our local village school. And it has perhaps taken this long to realise that those long years of existing in a state of perpetual panic, have taken their toll and most likely colour my children’s lives as well as ours.

So that late summer evening comes back to me now as I write, and I realise we’d been naïve to think Matilda’s life would follow the same trajectory as her siblings. Don’t get me wrong, we lived in a lovely village, Matilda attended the local school and she was well loved and accepted, accepted I think rather than wholeheartedly included in her community. There were of course exceptions to the rule and there were some occasions when the doorbell rang for her, but they were few and far between and it took a special type of kid or family to make the effort to include Matilda. And that’s the thing. It does take a bit more effort to include Matilda. You have to tune in to her speech, especially when she was younger and still peppered her speech with lots of Makaton signing. You also had to be quite responsible for her erratic and acrobatic physicality. Offers of play dates where kids quietly entertain themselves or wander to the park for the afternoon were rare. But those who made the effort to get to know her were in for a delight. For Matilda is a girl of magnetic personality and fantastic humour who finds something exciting and engaging in every encounter.

The world is like an old fashioned Kodak coloured photo viewed through Matilda’s idiosyncratic lens. She is enthusiastic and lives life in the moment, engaging the dourest of old men and the most awkward of teenagers. Her natural vivacity and friendliness know no boundary, and this is something of an issue as life moves on. But then, when she was 7, the middle of 5 siblings ranging in age from 4 to 11, she was the ring leader of her own gang, the one who did the talking and social interacting while the others played out the genetic shyness with great aplomb. But of course time does not stand still, 11 meant high school for her big sister, bringing with it endings and beginnings and more changes than we’d ever considered, with our heads firmly focussed on the here and now, in survival mode.

And so here we are 10 years later, approaching what feels like another crossroads, another momentous change. I breathe and blink and reluctantly try to loosen my grip on this young woman’s hand, grasping thin air as she moves beyond me and pulls back, circling us right now and unsure what direction she’ll head off in. Only time, patience, support and a lot of love and guidance will tell. And she will tell us, much as we will try to steer her, Matilda is nothing if not her own person with opinions and personality. Our position as her loving parents and legal guardians is to help her make the right choices to give her the best possible life. What a huge responsibility, especially when all she really desires is to go to UCLA, apparently to study to be a bikini model. You understand it’s not an easy parenting moment. Especially coming as it does when many parents are ready and eager to step back into their own lives and gradually recede from their children’s.

We are navigating a whole new set of rules, how to parent a young adult so she doesn’t realise she’s being parented. Without seeking a drop of pity, because what is there to be sorry for? Spare a though for parents of children and adults with a learning disability, and maybe just give them a bit of a break, a touch of compassion, or just offer to be the responsible adult in their child’s life now and again, you never know what you might stand to gain.

So back to Troon beach. Matilda spent two hours regaling me about every screen appearance of Dwayne the Rock Johnson, her current celebrity crush. She speaks in the faux Americana English of her Youtube/ TikTok generation. Her role model is her eldest sister, a lovely girl with many fine qualities, which Matilda distils to the most revered in her eyes –

‘I just want to stay in my bed on my phone like Amelia, and order McDonalds. I want to wear inappropriate clothes and get drunk at clubs and swear a lot…’

Amelia works hard, is a beautiful singer and a kind, caring girl who also likes to go out and have a good time. Matilda aspires to be just like her and I wish she’d focus on her sister’s positive qualities. I try to point out to Amelia the need to be a good role model for Matilda, but really, she’s a young woman with the right to her own life that 2020/ 21 has already robbed much of what’s great to be young from anyway. She needs time to live her life but is always a loving, present and protective sister to Matilda, if not always steering her on the straight and narrow. As Amelia points out, Matilda’s 17, why shouldn’t she do this/ watch this/ say this? And as the responsible adult, I have to try and balance all these teens’ and young adults’ opinions, needs and wants and make sure Matilda comes out of it unscathed. The others will grow up and away into the land of self-sufficiency. Matilda maybe, but her journey there will certainly be by a longer, more circuitous route.

So now I am finally embracing this much talked about need to write down Matilda’s life, or my version of life with her in it, as she approaches, with much heralding and count down, her momentous 18th birthday. Red carpets and paparazzi are on the list. I thought I’d do it when she turned 10, but of course, life was still much too busy. And now there is more to reflect on, our lives and those of her siblings have been changed in so many ways that we can’t even imagine due to the global events of 2020/21, a time when our kids are all desperate to spread their wings and go out into the world and we’ve been cooped up here, very luckily in a new, bigger house just before lockdown hit. 7 people all going through various life stages. I thanked the creator of all global catastrophes that they weren’t all babies and toddlers, but having 5 teenagers in lockdown had its own challenges.

My mind will forever hanker back to favourite TV families of my childhood – The Waltons and Little House on the Prairie, but that is just me. Our reality was crap food deliveries at all times of the day and night, House Party and cans of Dragon Soop on tap for the elder two, furloughed and bed ridden, with us trying to work from home and home educate the younger 3. More details in the right time line hopefully.

Anyway, suffice to say Matilda has had lots of time to hone her party planning and I have sliced out some time to stop leaping up and outdoors to do some frantic exercise with any spare moment and realise if I don’t just sit down and do this, everything will have changed and I will have lost my ability to recall basic facts. Here goes, again.

So in the words of one of Matilda’s favourite actresses, Julie Andrews, Let’s start at the very beginning, a very good place to start. Actually, that just leads me to another anecdote about our beach day. Matilda started a game from nowhere as we drove along the winding A71 through South Lanarkshire and East Ayrshire to the sunny coast. It started with, Who Sang That? And transmogrified into Who Plays (name character)?, in any given film/ series. Her knowledge and memory for actors’ and singers’ names is encyclopaedic, while mine is at the stage of names forever being something nebulous that I used to know, but now float tantalisingly just out of reach.

It was a game that led us right through Ayrshire with many obscure actors from countless CBBC series to American TV to classics like Caracatus Potts from Chitty “Dick Van Dyke!” she shouts, or Calamity from Calamity Jane “Doris Day!” before poor Flora in the back seat even has a look in. Then the game ends and Matilda, always in charge of the music choice in the car, much to her siblings’ chagrin, opts thankfully for the new Teenage Fanclub album and we’re off, singing our way to the seaside.

January 2022

Matilda will turn 18 on the 26th January 2022. She has been on count down since 27th January 2021. She plans 3 tattoos and a belly button piercing. This from a girl who leapt off the bed the one and only time she had her eyebrows waxed.

Her older sister recently moved to London. I overheard Matilda facetiming her on Sunday morning, just after I’d attempted to lure her from bed before the day disappeared into January dusk.

“I have to set some boundaries for mum. She can’t just barge into my room without knocking. I want to move out.”

Within 10 minutes she was downstairs, fully dressed and repentant, looking to encircle me with her arms and say sorry. I’m sorry too. I can become exasperated, and what starts as a persuasive exchange can rapidly descend into demands and drama.
That Sunday morning after her outburst she decided “ I just want to go and live in Never Land, I don’t want to grow up.”

There’s a lot more going on inside this girl’s head than just excitement about her impending coming of age.

Part II of Chapter I…

 

 

 

 

 

Katy Lironi
@LironiKR