“Choose Your Battles” (and dealing with those who didn’t get their copy of the battle plan)

Autism never affects a singular aspect of a person, and from a parenting perspective the myriad of ways in which autism impacts on your child is overwhelming. When you first get your child’s diagnosis, it is followed by a realisation of the number and depth of challenges ahead, and that sinking feeling of, “Where do I start!?” Gross motor, fine motor, language, social skills, disruptive behaviours …?mother-and-child-silhouette-clip-art

One of the earliest pieces of advice I received about dealing with and addressing my first child’s challenges, was to choose my battles – don’t try to fix everything at once. There is brilliance in this advice, for a bunch of reasons: It allows you to really focus on whatever issue is the most important at the time, without becoming confused, distracted, and overwhelmed by all the challenges present in daily life. It encourages you to see the challenges not just in hierarchical order, but in logical order – helping you to see what skill is necessary before that next larger skill can be approached. It allows you – and your child – to feel and celebrate that all-important sense of accomplishment as each issue is addressed and overcome; it’s a great idea to keep a journal of what you’re working on that will help you see how far you’ve come. Each challenge that you overcome together will add another tool in your toolbox too – new methods that have worked in the past for your child in one area, are likely to work well for another area too.

This approach also gets you in the right mindset for a lifetime of ever-changing challenges, without feeling defeated – the reality is that new challenges will emerge, and when they do it’s important not to think you’ve gone backwards or wasted your time or to get frustrated and angry. Instead, you approach it as something that needs to be dealt with as best as you can and as soon as you can, but in light of all the other issues you are already working on. Figure out how it fits into the existing “battle plan,” and give it the time and attention it needs when possible.

For example, if you have a non-verbal child who is struggling with finding alternative forms of communication, that is an extremely important issue that – once addressed – will also help to solve other issues. If you focus your efforts on giving them a voice, it will help address issues of aggression and anxiety and fear, and give you a new vital tool for approaching other issues such as learning and growing basic self-care skills. Ideally, and where possible, you’ll have a “battle plan” per area of challenges, perhaps that will be toileting for fine and gross motor skills, teaching “I want” for language skills, patience for social skills, and decreasing the level of noise associated with stimming when in public.

This is not to say that you couldn’t and shouldn’t tackle multiple areas within a category, indeed it will frequently be helpful to build corrective measures into daily routine, thus making those corrective measures easy and natural for both you and your child to work on each day. For example, you might work on the various motor skills required for toileting, tooth-brushing, and getting dressed, as each event turns up in the daily pattern, but if the child (or you) start to feel worn out by the intensity of effort required each time and you get to the end of the day feeling just exhausted by the endlessness of challenge-after-challenge, then it’s good to rein back what you’re trying to achieve and focus your efforts on a single key battle instead. Battle plans can, and should, be adjusted as needed.

It’s essential to always remember that the battle is the challenge getting in the way of your child’s well-being and functioning, not the child themself – if you ever feel that the challenge or the battle is the child itself, it’s certainly time to review your plan because chances are you’ve become overwhelmed and lost focus.

So you’ve got your plan, you’ve got perspective, you’ve got focus and you’re humming along nicely day-to-day … and then you go out in public, and all that the public (or your family, or friends) sees is what you’re not working on. And they judge, either quietly or loudly, and they make you feel small and inadequate, and they make your child feel unwanted. They didn’t get their copy of your battle plan, but did you owe them one? Teachers and therapists should all be aware of your battle plan, and be accepting of and working alongside you with it – they are likely to have helped you put it together, though you as the parent are probably the only person with the oversight of the entire plan (and they all need to understand and respect that fact when working with you). You can try to explain to friends and family what the plan is and why you’re not (for example) punishing your child for every tiny seeming rudeness because right now you’re strongly encouraging any effort by your child to vocalise their needs. If friends and family don’t understand or accept your plan, then too bad for them – like teachers and therapists, it is necessary that they respect your role as parent and primary carer. If you’re doing right by your child, then you’re doing right.

Which brings us to what the general public thinks about your battle plan. They don’t know it, and have no right to demand it of you, any more than they owe you their skin treatment regime to explain the presence of their acne or eczema or wrinkles. You have a right to access public spaces, and to be in public, as does your child, and as long as no one is being hurt or damaging property then “abnormal” noise or behaviour or “age-inappropriate” things your child does should go unremarked. I know ignoring strangers’ judgments is easier said than done, but it comes with practice – here’s how I deal with it these days: If my child is doing something odd, I act as if it’s normal – I don’t look apologetic or weary or embarrassed, and I’ve found that people take their cue from my own response. If random members of the public persist with the staring or judgy looks or harsh words, just hit them with your sweetest smile and wish they a nice day – modeling for them the good behaviour they have themselves forgotten to exhibit. Choosing your battles applies here too.

In summary then: Choose your battles, record and celebrate your successes along the way, be aware that not everyone knows your battle plan and that’s OK (you don’t owe Joe Blogs a run-down), and always remember the child themself is not the battle – they’re right there with you, working just as hard as you are, towards that next success.

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Understanding the cuts to IDEA autism services * UPDATED *

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This post has been updated, due to important new information being revealed during question time in parliament, on April 6th. There has been a flurry of concerning stories of late, about changes to the autism services, supports, and programmes provided … Continue reading

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Revelations

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When I was dragged into the world of disability by my eldest son, I was forced to confront a lot of new and uncomfortable truths – truths about people, about society, and about myself. I couldn’t stay who I was … Continue reading

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What to look for when choosing a school for a child with special needs, in NZ

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One of the most challenging, and most important, decisions we make as parents of young children with special needs, is where to send them to school. I have two children with various special needs. One of my children has been … Continue reading

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We Stand Together, or We Fall Apart

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There is a growing awareness in New Zealand that our education system is not delivering on basic obligations to a significant and vulnerable group of children. This failure of the system affects all of the country’s children: When a child … Continue reading

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Seclusion versus Time Out, and Alternatives

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Why is it so wrong for schools to use seclusion, how is it any different from time out, and is time out a good idea anyway – what are the alternatives? These are important questions, that have come to the … Continue reading

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Dental Fear or Dental Care

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My children’s dentist is a free dental clinic attached to a school that is about half an hour’s drive from home. It’s not close, it’s not convenient, and I could get free dental care for the kids directly through their … Continue reading

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Seclude, Exclude, and Excuse.

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What does it take, to justify putting a child in a small, empty, locked, dark “time-out” room in a school, when they’d otherwise be playing with their peers, or learning in the classroom? The answer you’ll get most often, from … Continue reading

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“Education for All” Rally

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You may have noticed your Facebook friends’ profile pictures changing to the “education for all” picture. It should be simply a statement of something we can take for granted in this country – we’re told we have a world-class education … Continue reading

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American Accents Aren’t Disney’s Fault

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In a recent (and I would add “highly irresponsible”) piece of reporting from the New Zealand Herald, we are told that an explanation for children turning up at school with American accents is that children are watching too much Disney … Continue reading

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