How To Become The Chief Of Your Child’s Special Needs Tribe: My Book

How To Become The Chief Of Your Child’s Special Needs Tribe: My Book

Today’s conversation is about writing a book. I speak to many business owners who have plans to write a book. It was something I thought about, and something I was always encouraged to do.

Different people poked and probed and said, “What about a book? You should write a book.” I never really took them seriously. I was of the belief that because I work with families and children like everybody else, I had nothing different or interesting to say.

It was during a business program that it really dawned on me that there were some glaring gaps in the allied health market so I wrote ‘Becoming Chief: How To Lead Your Child’s Special Needs Tribe’.

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Tailoring the book to parents’ needs

This was back in 2013-14 when the NDIS was slowly but surely turning its lights on in some of the trial sites. I realised there wasn’t any solid support for families with a child with special needs to help them navigate the leadership role they essentially would be assuming in years to come.

It took quite a few years for the market to pick up on supporting parents and the unique needs of supporting parents. That’s where I got the energy for jumping into the book writing caper.

The overarching question was, what do parents need to help them step towards a leadership role? Especially because a lot of the parents I worked with would have anywhere between three and eleven different service providers. That included educators, too.

There was a lot of communication, a lot of important decisions to make, and even more information and paperwork to juggle. I saw the NDIS as only adding to all of that.

That’s exactly what parents are learning to manage nowadays.

I worked with a book coach and spent a lot of time planning the book in order to get the structure right; to make sure it catered to parents’ needs. I went back to some of the clients I’ve served over the years and interviewed them.

The writing process

So with my idea and my information in tow, I put together a detailed content outline or book structure. When I actually came to writing it, I managed to write it in just 30 days. How? I wrote it in January when life and work was a little quieter and I had uninterrupted time.

To make the most of my time, I got into a routine. I got up early every single day in January, regardless of where I was. I sat with my trusty laptop and wrote between 1,000 and 2,000 words. The typical allied health report is around 2,000-3,000 words, so we are nearly always good, effortless writers. It almost comes easily to us.

Since I’d spent time planning, I didn’t have to make it up on the fly. I would look at my book map and know which topic came next. If I didn’t quite feel like writing them, I could pick other topics and drop them into the sequence in the book document that I had on the fly. In the course of 30 days, I wrote 40-45,000 words.

A new adventure

Then the writing process got really interesting. I sent it off to an editor and it had, in the end, three rounds of editing. Then it went to a wonderful agency who worked with self-publishing authors and we did layout and illustrations, all the graphics and the front and back cover work and all of these other bits and pieces. It was a complete and utter learning adventure from day one to when the boxes arrived.

Since then, my book has ended up all over the world. It’s in many libraries, is largely available online as an e-book, and I’ve got a few boxes tucked in my office because I’m quite often posting them out.

Inside the cover

The book starts off with an introduction about the nature of the book, about the notion of outsourcing to experts and I discuss what it means to be a chief and how to prepare. I also discuss a wonderful poem that I love, ‘Welcome to Holland’.

Chapter one – Learning About the Disability: Asking Dr Google, Finding people with similar experiences, Speaking to your tribe, and Value of social media.

Chapter two – How Do You Tell People? How do you share information about the diagnosis? Telling family and friends, Telling your child, Telling other kids, Telling teachers.

Chapter three – Building The Kids Tribe: Members of your tribe. You’ll have a huge list of allied health professionals, like case managers and family service coaches, that will become part of your tribe.

Under each profession in this chapter, there’s a description about who they are and what they do. There’s also a conversation about the different models of service: key worker model, transdisciplinary, multidisciplinary and interdisciplinary.

It can be very difficult for allied health professionals to explain and make sure we’re providing a 360-degree, whole chart view of things.

I also talk about choosing your team, getting started, and how important it is to have strong team communications.

Chapter four – Building Your Child’s Program. This chapter is about goals, thinking about the bigger picture, letting your dreams escape and run wild. It talks about learning profiles, school support, and how to get all of your health professionals lined up and talking with each other.

Chapter five – Staying Organised. I share some tips for electronic file management, paper management, using appointments wisely, and organising all sorts of things. I have had very interesting feedback about this chapter from people who have read it.

Chapter six – There’s No Fun in Funding. This chapter provides a really high-level view of the funding opportunities available and how to manage and run surveillance on all of those funds.

Chapter seven – Taking Care of Yourself. This section covers seeking emotional support and growth, getting physical support, making time for you, weaving everything into the family and making sure that family time has some fun as well.

Of course, I’m biased, but I think ‘Becoming Chief: How To Lead Your Child’s Special Needs Tribe’ is a very useful, practical book for you, your allied health team and your clients.

The purpose of a book is to solve a problem and I would love to encourage you to think a little bit more seriously about getting a book into your professional future. So if you’re thinking of writing a book, please do get in touch.   

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