THIS MUCH I KNOW

JAI BRE­IT­NAUER wasn’t sur­prised when her son Isaac was di­ag­nosed with autism spec­trum dis­or­der. She talks about what a char­ac­ter her son is, and the colour that autism has brought into her life

Little Treasures - - CONTENTS -

Mum Jai shares her fam­ily’s jour­ney with autism

As a new mum you spend a lot of time fo­cussing on the mile­stones – and Isaac hit each one with speed and ac­cu­racy. First smile (at me pulling faces) at three weeks; first word (daddy) at nine months; first steps (in a café to get my cake) at 11 months. We rev­elled in those small tri­umphs, but in the back­ground was a nig­gle. Isaac ticked all the boxes but there was some­thing else go­ing on too, and we couldn’t put our fin­ger on it. Our wash­ing ma­chine, in our tiny ter­race house in the UK, was un­der the stairs and Isaac would sit in his baby bouncer for a full cy­cle, just watch­ing the wash­ing spin­ning round. He would spend hours con­nect­ing things to­gether, lin­ing up boxes, cars, toy trains, you name it. And, although he had a healthy ap­petite and sweet tooth (cake was his sec­ond word) he never told us if he was hun­gry or thirsty, or even tired. It was like he didn’t re­ally know un­til the op­tions were on top of him. He fas­ci­nated me. As his speech de­vel­oped, some­thing very bizarre hap­pened. He took on a very for­mal way of speak­ing, us­ing words quite com­pli­cated for his age, and de­signed his own vo­cab­u­lary around one cen­tral truth – that he was a steam train. At first, he called him­self Thomas and we said, “Oh, well, he loves Thomas and Friends!” But later, the in­ter­est in Thomas the Tank En­gine wore off, and other trains took over. For a long time, he would only an­swer to the name “Port­bury” – a heritage steam en­gine we used to ride on. You might say that all kids have favourite things, and might pre­tend to be princesses, su­per­heros or even vil­lains from their favourite books and TV shows. But this was more. It was like he be­lieved so com­pletely he was a steam en­gine, you couldn’t break him out of it. I didn’t ask him what he wanted for din­ner, I had to ask him, “What coal would you like in your boiler?” We didn’t walk to the shops, we ‘choo-chooed to the sta­tion’. Once, I picked him up from kindy and they told me he’d fallen back­wards off a bench while eat­ing a tomato. He said, “Mummy, I slipped off the sta­tion while fill­ing up with coal, and bumped my boiler on the tracks.” He was two years old. This be­hav­iour had huge up­sides. For ex­am­ple, I could trust him im­plic­itly when we went out – al­ways dressed in a train bib with a sta­tion-mas­ter’s hat – be­cause he walked in a dead straight line (on

Spend­ing time with Isaac can feel like spend­ing time with a class­room of chil­dren – but they’re some of the most in­tel­li­gent and tal­ented chil­dren you’ll ever meet, so why would we want that to change?

the tracks) and al­ways stopped at the road (level crossings or lights). But it caused prob­lems as well. Once the kindy called to say he had pushed a girl and screamed in her face. When we spoke to him we dis­cov­ered he’d been ‘buffer­ing up’ and sound­ing his whis­tle. Out in pub­lic too, while most peo­ple thought he was quite cute, some pedes­tri­ans got an­noyed when he ‘peep-peeped’ be­hind them in­stead of say­ing ex­cuse me. By the time Isaac was three he could draw a steam train ac­cu­rately, in six dif­fer­ent 3D per­spec­tives and name ev­ery part of the en­gine. We thought this was both bril­liant, and a lit­tle bit scary, so we be­gan to seek ad­vice from med­i­cal spe­cial­ists. Even­tu­ally we were given a di­ag­no­sis – high func­tion­ing autism spec­trum dis­or­der, or what many peo­ple know as Asperg­ers syn­drome. Now, if I said I didn’t cry when I got the di­ag­no­sis, I’d be ly­ing. My hus­band Noah and I both blubbed – but not for long. A di­ag­no­sis meant we could be­gin to learn more about our beau­ti­ful boy, and un­der­stand him. We loved him dearly but he was, in many ways, a mys­tery to us. It also meant he could get the help he might need at kindy and later on at school, and in all hon­esty, it’s much eas­ier to say to peo­ple, “He’s on the autism spec­trum,” than it is to say, “He just re­ally, re­ally loves trains,” when they need a rea­son for his slightly odd be­hav­iour. An autism di­ag­no­sis was, for us, a door open­ing and autism has taken us to some very ex­cit­ing and in­ter­est­ing places. Apart from be­ing steam train nerds – I mean, ex­perts, we also know a lot about space. The ques­tions our boy asks us about space ex­plo­ration, time travel and other plan­ets – and his level of un­der­stand­ing when he an­swers – are well beyond his years. Isaac is also a real ad­ven­ture seeker, hav­ing been para­sail­ing with his dad, learned to ski like a pro, rock climb and cur­rently he’s learn­ing guitar. Once he be­comes in­vested in some­thing, Isaac seems to have no lim­i­ta­tions on his achieve­ments. We will also never need to buy art­work or sculp­tures. The out­put from ‘the mak­ing area’ is so ex­ten­sive, that it now war­rants an en­tire room of its own with spe­cial draw­ers for all the dif­fer­ent things – pipeclean­ers, goo­gly eyes, glitter – he might need while cre­at­ing. It’s magic to watch, es­pe­cially when he dons his ‘lab jacket’ and glasses. It is true that autism is chal­leng­ing. It can cause worry and stress. You make Isaac a cup of tea in the wrong mug, or for­get to lay some clean socks out for him, and you know all about it. He’s a very par­tic­u­lar young lad and that can some­times stand in the way of mak­ing friends or feel­ing sat­is­fied. But the in­cred­i­ble cre­ativ­ity, ex­cite­ment and joy that comes with those chal­lenges is worth the pay­off. Spend­ing time with Isaac can feel like spend­ing time with a class­room of chil­dren – but they’re some of the most in­tel­li­gent and tal­ented chil­dren you’ll ever meet, so why would we want that to change? Our house is chaos – loud, messy, busy and wild, but never, ever dull, which is ex­actly what I dreamed par­ent­ing would be. 

Jai and hus­band Noah dis­cov­ered early on that son Isaac’s spe­cial in­ter­ests made him stand out.

Isaac clock­wise from left: His love of trains de­vel­oped early on. Rid­ing high with mum. A beam­ing guest of hon­our at his par­ents’ wed­ding.

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