About Me

Me

There are two types of people in this world. There are kind and charitable people, who dedicate their lives to working in a field like special education, and who bear the weight of the world on their shoulders. There is another kind – the tax lawyers, publicists, finance, Silicon Valley types who think about how great they are and how asking them to pay a slightly higher tax rate on their six figure salaries is totally unreasonable. They lead meaningless lives full of 4WDs, private schools, and walk in wardrobes.

All my life I have fully intended to be the second type. The daughter of poor immigrants (well, they were pretty poor, I still had private tutors but everyone has one of those), I purged my soul of any kindness while attending an elite private school and honed my shark-like legal instincts at Sydney Uni Law School. I then got into one of the most lucrative and useless professions I could think of – tax law. My way to the million dollar bonus was clear. All I had to do was not burn out or develop a drug addiction in the ten years prior to making name partner at some top four accounting firm.

I also planned a few other things while studying, working at a law firm, volunteering at a legal centre and occasionally leaving my house for the purpose of drinking alcohol. I planned to get married by 25. I planned to then get pregnant, have a baby, drop him/her off with a grandparent/daycare/nanny and be right back at my full time job doing my soul crushingly useless but well paid thing.

One of the more surprising things about this is that most of these plans actually happened. In that exact order. I got married to a wonderful man just before my 25th birthday. I then got pregnant within a month on our honeymoon, had a baby nine months later, and started planning the daycare I would drop him off at on the day he turned 11 months old. I also signed him up for Sydney Grammar, and deliberately didn’t put him on the waiting list for any other school. When my doctor suggested that a two month old was a bit young to be pressured to get into a selective school I just stared at her. Were there kids that couldn’t get into a selective school? I always thought they must do this on purpose, to free up time for getting pregnant at 13 or whatever it is those kinds of people did. Yes, this is how I thought. No, this thinking did not end well for me.

It was then that it started to unravel. First, I could not make myself go back to work when my baby turned 11 months. My friends suggested I loved my baby too much and was enjoying staying at home with him much more than my job delving into capital gains tax and taxation of trusts. I told them that while I definitely was quite attached to the kid, the only people that could say ‘enjoy’ and ‘staying at home’ in the same sentence were people that had never had kids and had never been near a small child for more than an hour of their life. I may have also muttered something about how some people have all the luck.

See despite what I have said earlier I loved my job, and although it might crush the souls of others it made me really happy every morning to know I would get to go to work, and analyse transactions. It’s true, I was certifiably insane at the time, but that was me. I loved numbers, I loved tax, I loved how it worked and what it represented – a society trying to decide democratically who deserved help and who could do some heavy lifting. I used to rant at my husband about capital gains tax and stamp duty (poor thing) and I missed it so much I actually did a large chunk of my masters while I was home with Mikie. It was not because of work or finding meaning in life that I decided to stay with him.

The truth was that I couldn’t imagine leaving my little boy at daycare because there just seemed to be something…unusual about him. First, he cried a lot. I don’t mean a lot like babies do in sitcoms, where they cry for about fifteen minutes at night sometimes but don’t stop their parents from going to a bar the next day after giving birth (Yes Modern Family I’m looking at you). I mean he cried at EVERYTHING. At a small beam of sun accidentally creeping up to his face. A sound. A movement. The lack of sound or movement. He was allergic to egg, dairy, lentils and almonds which meant I spent most of the day cooking and reading ingredients lists for snacks. He also seemed to be quite delayed. He didn’t roll over until he was 10 months old. He couldn’t crawl or walk, and barely played with toys. Over the next eight or nine months I took him desperately to Gymbaroo, Playgroup, got him enriching toys and dance classes. He didn’t talk or point. I still dreamed of the useless corporate life with the salary (oh how I missed having a salary) but decided to take six months to bring my son up to speed. I also put him on waiting lists for some non selective elite private schools, just in case.

Eight months later, he was being diagnosed with autism and all the plans I had built for his future (I was up to third year uni, don’t judge me) and of course my plans of well-paid service to the corporate overlords, were gone. I became acquainted with special needs terminology. I learned how hard he would have to work to learn how to do the simplest things, like pay attention to a book for ten seconds. I started getting nervous about the possibly unpleasant boys at elite private schools who would judge him exclusively on his sports or academic ability (I know I know). I became an ABA therapist, doing about half of my son’s 30 hours per week of therapy and got intimately acquainted with special schools.

Life is really weird. Many of my friends from uni who started out wanting to change the world and volunteered for domestic violence service centers are now corporate lawyers with the aforementioned soulless jobs and large salaries. And I have, despite all the early signs, become a housewife, mother of a special needs child, and my existence actually helps the people around me. I have probably become a better person, if only because the only qualities I used to value in someone else were their education levels and their IQ. This self improvement was, as I have mentioned previously, not entirely voluntary. But to continue this trend I have decided to write about my experiences with my little boy in the hope that it helps another parent just as lost as I was.

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10 comments

  1. Thank you Elly I love essays, solicited or otherwise! It’s wonderful to see where your son is. Maybe Michael will be there too one day. Honestly I am not too worried about him, although there are of course huge skill defects, but I can see he has this happy easy-going personality and he’s so incredibly affectionate so I know he will be ok. The academics I used to care about, I couldn’t imagine having a kid who got under 99 in the HSC, but I got over that very quickly. I love the therapy and he’s already doing so much better – so many play skills, less stimming, and he’s getting really social. He has two girlfriends, which I may need to have a talk with him about…it’s those blue eyes…

    I will definitely stay the course! The only thing that has been hard is finding schools that will support him. We are being pushed so hard to go to a special school, and I’ve seen the research – he will do better if included in a mainstream school so I’m fighting for that. The staff at the Lizard Centre have been a great help finding schools that they’ve worked with in the past. Other than that, I look forward to seeing him turn into a young man! I think he will have a passion for music, and he loves swimming, so we’re off to a good start. Keep in touch for sure!

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  2. HI Elly, you are such an inspiration for mums like me..I have three years old with autism he just echoes, loves to say letters, spell words, trace shapes, letters and numbers but his struggles are huge in language and social interaction…since he goes to childcare three days a week, how many hours of ABA will you suggest,,

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    1. Hi Anny ABA usually needs to be intense to work. It is recommended to do at least 25 hours a week. A lot of families with kids at preschool will hire what is called a private shadow, who is a therapist trained in ABA and who follows the child around at preschool and helps them with the social interaction and language aspects. ABA centres like Lizard tend to also run special small group programs that help with social skills (http://www.lizardcentre.com/social-skills/) as well as programs that teach the child to play one on one with a peer. So the hours can still be done at preschool, as well as after and on days off, remembering that the intensity of ABA is a very important aspect of it. The best people to ask though are at your local ABA centre. If you look at the ‘Resources’ post I have a link to the Lizard Centre and also a document that lists all the ABA centres so you can choose whomever you like. The Lizard Centre have three offices: Lane Cove in Sydney, Camberwell in Melbourne and Eastwood in Adelaide. I’m pretty sure they’re the best. But you can give the others a try too!

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      1. Thanks a lot for such detailed response…we have started with momentum…I however feel the childcare centres are not very open to shadow…I will talk to my son’s center soon…everyday, I struggle and pray to make things easier for my son…

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        1. It’s true Anny but it really depends on the centre. Some are fantastic with it. It will get easier. Even one year of ABA therapy can do absolutely amazing things

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    2. All I can recommend is what has been studied, which is the minimum of 25 hours a week. This is unquestionably VERY hard to achieve, but the goal with ABA is to make every waking moment a time for intervention. That is exhausting and expensive, so at the end of the day you really have to do whatever you can. We did our 25 hours around full-time kindy, which was so tiring for our son (the programme had to be really tailored to accommodate fatigue). When he was 5 he went to school and the hours dropped to 10. I personally wish I had delayed his school entry until he was 6 so he could have had more intensive ABA for that additional year, but you know what they say about hindsight being 20/20. Most of my regrets are that I did not do more. He is great, but I wish we had worked harder and made even more progress in that early intervention period.

      Childcare may well be a good setting for some ABA lessons, as you really do benefit from having same-aged children to learn social and play skills. J had a neurotypical, fraternal twin, which was very helpful.

      We went with a company called I.S.A.D.D., which was one of few home-based ABA groups in the pre-NDIA days. They cost roughly double what they cost a few years ago but at least NDIA covers some of it these days. Not sure if this actually leaves parents in a better position financially at the end of the day though…

      One thing I cannot over-emphasise is how important the repetition and discrete trial training is in learning language. ABA is evolving as far as play and social skills go (in my experience, ABA is less helpful here). But ABA – and the billion repetitions involved – is the ONLY way I have seen to teach the ASD mind language. Do not worry too much about the echoing. All the professionals told me this would fade and ABA eventually addresses it, and they were right. I can’t even remember when it stopped, it was once language mastery was achieved to some degree (I think around 4-5).

      The other big thing for us has been teaching him to read. We did all his sounds – small then capitals – then the letter names (all presented in a discrete trial training format, learned through matching, then receptively and finally expressively). Our therapy group uses a very cheap and easy book by Distar called How to Teach Your Child to Read in 100 Easy Lessons. I used it for all my children and they are all extremely capable readers. J went from being the absolute bottom of his class in reading to being somewhere in the top quarter (academic achievement does not worry me, but ‘keeping up’ reduces the cognitive load involved in managing all the social interactions and processing challenges, so it is worth addressing fairly aggressively). The reason learning to read is important for ASD kids is that they are SO strongly visual and school is such an aural environment, with any number of distractions thrown in along the way. Once your child can read, things like social and behavioural prompts become a matter of scrawling something on a strip of paper for him to refer to. You will find that schools will use written instructions fairly often, and your child can refer back to them as many times as is needed to stay on track with a task.

      The other big thing to remember is to strengthen their strengths! They actually do have lots of them, and this will be how they manage to find their niche in the world someday, so give them the time to progress in this field and the pleasure of being good at something when they struggle so much. For my son, this is visuo-spatial skills, so we did lots of puzzles, Lego, drawing, anything that sorts space.

      Don’t give up! I have seen a SEVERELY autistic boy who responded amazingly to ABA – 60 hours a week for him at first, his mum also became an ABA therapist. He is my niece’s best friend and I have known him since he was 4. Now he is 17, dux of his class and going into law, into music production. You would never even know he has Autism, let alone had it severely, there are literally no visible signs of it, even to the trained eye. Not every kids responds like that but for him is has been transformative.

      Another essay! Sorry guys :S

      Reply
      1. Thank you for your essays Elly! Do you mind if I put them up as a separate post and share them? They are just too valuable to keep them hidden here in the comments. And feel free to email me if you want any more essays posted! They’re just too good to keep to yourself 😉

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        1. No of course not, that’s why I wrote you. It’s like all the ABA families just disappear after 5 or so, you hear nothing else from them (I think mainly because ABA makes their family lives functional in so many instances, and they just get on with it). But for newbie families trying to figure out which path to take, the lack of information can be so troubling.

          A few other things: We tried dietary interventions and found nothing worked. If you want to do this, go ahead. I have friends who swear by it but, mostly, the assessment of its effect is extremely subjective. Be aware of confirmation bias, I think this is often at play.

          Therapeutically: MAKE THEM DO BALL-SKILLS AS A DRILL. Gawd I wish I had pushed this. You reach school and it is ALL any boy wants to do. Soccer and football, football and soccer. Then some more soccer. It requires very little in the way of complex social engagement and the rules will appeal. Our kids tend to have gross motor issues and they receive instructions aurally in a game, which puts them behind from the start of a contest, be in sport or a game. Children change the rules (chasey has ‘reverses’ and ‘safe areas’ and ‘freezes’ etc, all very confusing). It is no fun to play a game when you are always the last one out. Address this from a young age and reward for ball skills. It will be the foundation for your son’s friendship with other boys.

          Use “weaknesses” as strengths – they like order, they like rules, they like predictability. Work it into your therapeutic life and drills. But DO NOT give it in real life. They like a certain plate, a certain rigid routine, a particular driving route? Challenge those life-impairing inflexibilities. They can get their repetition and routine from things that help them fulfil their potential as people (like reading every night before bed, or following a to-do list with task completion for their homework). We challenged every iota of inflexibility as it arose. I remember he once had to follow a certain routine in car travel, including how he put his seatbelt on. We made a game of running in and out of the house to the car and doing it a different way each time (with M&M rewards), until flexibility was a good thing. I must have done that 20 times… I have loads of examples of this. Never give in to rigidity, but always appreciate the discomfort that flexibility causes and do what you can to alleviate this (stress toys, relaxation time).

          Give OT a go. We did not try it until he was 8 as ABA was meant to be ‘all-inclusive’ but I really regret not doing it earlier. ASD is VERY closely linked with increased anxiety, so treat anxiety as a routine part of therapy. My son approached his weekly OT session kind of the way I would a visit to a day spa, it was that great. We extended it into the home with swings for proprioceptive stimulation, wrapping for deep stimulation and a ‘relaxation night’ where we roll them all up like sausages and listen to soothing music by candlelight. It’s a nice way to end the week. They need this to regulate their processing, that is what stimming is all about. Just find a socially acceptable avenue for this.

          I’m sure I’ll think of more, this is pretty much my world!

          Reply
  3. Any time! Hi jack away haha. I’ll move it all to a post very soon – and feel free to email me or comment anywhere if you have any other guest posts you want to make!

    Reply

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