My ALLi author guest this episode is Sarah Ziegel, who has four children with autism. Sarah successfully navigated through the educational system to get the best care for her kids. It's that success that brought questions from other parents. So, to answer the many questions they had, she's published two books on navigating through the emotional, educational, and legal landscape of autism.
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Listen to the Inspirational Indie Author Interview: Sarah ZiegelOn the Inspirational Indie Authors podcast, @howard_lovy features @SarahJZiegel, a mom who advises other parents on caring for their autistic kids. Click To Tweet
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Inspirational Indie Author Interview: Sarah Ziegel. About the Author
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Howard Lovy has been a journalist for more than 35 years, and now amplifies the voices of independent author-publishers and works with authors as a developmental editor. Find Howard at howardlovy.com, LinkedIn and X.
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Read the Transcripts to the Inspirational Indie Author Interview: Sarah Ziegel
Howard Lovy: My guest this episode is Sarah Ziegel, who has four children with autism.
Sarah successfully navigated through the educational system to get the best care for her kids. That success brought questions from other parents.
To answer the many questions they had, she published two books on navigating through the educational, emotional, and legal landscape of autism.
I'll let Sarah Ziegel tell her story.
Sarah Ziegel: Hi, my name is Sarah Ziegel. I'm the mother of four boys with a classic form of autism. So, they were all diagnosed before the age of three. I've got twins and then two more boys, so four boys.
I started writing in the first place, because I became known for the fact that I've got these four boys and that I'd won tribunals, and that I fought the authorities and things, and people wanted to talk to me all the time, and I just didn't have the time.
One day I realized that for every hour I talked to one person and gave that one person some information, if I wrote for that hour, I could reach so many more people.
I grew up in London and I was one of those children that read from a very early age. I used to read in bed at night. I'm not a good sleeper, I didn't go to sleep early. So, I used to read in bed at night, and I worked out, not quite reading under the covers with a torch, but I had a bedside lamp, and my parents came up to bed at half past ten, and I was a very diligent child, so if my parents said, turn the light out, then that would be it, I couldn't read anymore. So, I worked out that if I turned the light out when I heard them coming up the stairs, and they went to their room, if they didn't say, turn the light out, then I wasn't doing anything wrong. So, once they'd gone into their room and closed the door, I'd turn my light back on, and that way I could read all night if I wanted.
Howard Lovy: Sarah began her career as a nurse and ended up travelling far away from home.
Sarah Ziegel: So, in the early eighties, I trained as a nurse in a hospital in London, and I ended up working in A&E for a few years off the King's Road, which was quite exciting, quite busy, and I loved my nursing days. I really loved my nursing days.
But then I wanted to go traveling and I went traveling, and I ended up in Australia for a few years, and I abandoned the nursing because it was a different system.
Then, four years later, having lived in Sydney for a few years, I came back to London and ended up back in an area of nursing called Occupational Health, looking after people in the workplace.
Then finally from there I started doing bits of writing, doing medical information writing, trying to make that sort of gobbledygook into easy to digest information for people about illnesses and ailments.
So, that's probably when I started writing. That was my early thirties.
Howard Lovy: Sarah got married in her thirties and, with her husband, began a family while she tried to keep up with her technical writing career.
Sarah Ziegel: I got married quite late, mid-thirties, and I wanted children, wanted to start a family.
Very fortunately my first off was twins, but the thing about having twins is that childcare means it's expensive, that I ended up not working and not going back to work because I had twins.
So, then I wrote some fact sheets. When they were asleep or in bed at night, I'd try and do a few fact sheets, but by the time they were two-ish, there were already issues with them. They were quite difficult to look after. So, I had to stop doing anything else except just full time looking after them.
Howard Lovy: As time went on, it became clear that something was wrong with her twins.
Sarah Ziegel: They never spoke, and they said they'd got glue ear, and they couldn't hear, but I kept saying, but I don't think they understand either. I think they can't hear, but they don't understand. They used to run away.
So, if you sat on the floor having a picnic with toddlers. They normally, I didn't realise this, but toddlers tend to stay where the parents are, where they can see you, for safety. My boys didn't have any inclination, they just ran, they would just run away, and they didn't mind, and they didn't care, and they weren't scared, they would just run, and they would run in opposite directions being twins. So, it was quite hard, I was constantly chasing them and trying to keep them safe.
They didn't understand not running across roads, not stopping at the kerb. Safety wise, they were really hard to manage.
Then finally I took them to a hearing test one day and the paediatrician, who was just doing the hearing test, turned around and said of course, they're autistic, and that was it. Just, they're autistic, and I'll see you in six months’ time.
Howard Lovy: After the diagnosis, Sarah began to gather as much information as she could about autism, and the prognosis did not look good.
Sarah Ziegel: We felt a bit like we'd just been run over with a bulldozer really. I did, in fact, being a reader, first thing I did that day, straight to the library to get some books out on autism, find out what it was, what it meant.
One of the first things I read was that parents have unrealistic expectations that their children will ever work, because of course they never will, and they'll end up in residential care. Because like you've said, back in the day, my boy's diagnosis was a different diagnosis than it is today if you get one.
So, this is the kind of Kanner's classic, nonverbal, no eye contact, severe behaviours, and this book just said, that's it, they'll never do anything. I put the book down and I didn't read a book again on autism for years after.
Howard Lovy: That's when Sarah said she went into action mode and refused to accept that there was a bleak future for her children.
She tried a program called ABA, Applied Behaviour Analysis, which teaches behaviour and communication for autistic kids. She credits the program for her twin’s ability to succeed today as adults.
But her twins were not the end of the story.
Sarah Ziegel: I then had my middle son. When the twins were diagnosed, he was about eight weeks old.
He too was fine until he was two. He was talking, walking, absolutely fine, and then one day he just regressed, dissolved, and just wasn't who he was, overnight almost.
Within a few months, he was diagnosed as well and lost all his language and went back to square one.
We then had another son six years later. I had a series of miscarriage, that's another sort of side one. Six years on we had another son, and by 22 months he was also diagnosed because he was non-verbal. So, we carried on. So, I had four boys who we did the same one-to-one therapy with, and they had one-to-ones at school.
We could never leave them for a moment on their own in the house, because it was very hard when they were young.
When they were teenagers, I suppose, the twins, that's when people started asking my advice, or how do you win a tribunal? How did you find a school? What did you do next? How have you got them talking?
So many questions and people would phone me and want an hour on the phone and then another hour, and I could have been a full-time counsellor, but I had no time. I couldn't do it.
But I also felt bad that I couldn't. Then I just thought one day, if I write for that hour that I would have spoken to someone, if I have an odd hour, I'll write for that hour. So, I started writing all the information that people were asking me and put it in a book.
But I had no experience and no, I didn't have an agent, I didn't have a mentor, a writing group. I knew no one that was a writer. I just thought I need to get this information out to all these parents out there who obviously need some support and need to navigate the system.
Back then I think even social media wasn't like it is now, it wasn't easy to find information.
Howard Lovy: The process of writing her book, A Parent's Guide to Coping with Autism, involved navigating around her emotions.
Sarah Ziegel: I really had very little time when the boys weren't at home or someone else was in the house. So, if I had an hour, I would try and just write in that hour.
Depending on my mood, I would write. So, I had a series of chapters with headings. So, I didn't write the book sequentially, and I didn't write each chapter sequentially either.
The book's half emotional and half practical advice. On a good day, I could write the difficult emotional bits and recount how I feel, or how parents feel, and be able to address those parts.
Then if I was having a bad patch, I would write a straightforward chapter that would be practical, like how to get your statement, which is like your statement of education, or how to apply for this grant or whatever it was, or the medical side of things. I would write about practical things if I wasn't feeling great, because I get so emotionally caught up in writing about the emotions that it will upset me, and if I was already feeling bad, then I wouldn't do that to myself. So, it was a kind of piecemeal book that just all came together eventually.
Howard Lovy: Sarah found a publisher for her book but was disappointed in the attention paid to her work.
Sarah Ziegel: I also then realized, very naively, that the publisher didn't do any marketing and didn't do anything to sell the book. So, that was a steep curve. I thought, I've written a book, I've done it, that's fine. The publishers will do everything, and they didn't.
So, then a couple of weeks before the book came out, I started a blog on Facebook, because I thought, I've got to do something. I've got to find an audience, find some people to read the book, to buy the book. So, I started blogging at that time.
Howard Lovy: Sarah's blog has been running for seven years now, and it's how she engages with her audience of other parents with autistic children.
That led to her second book, Marching to a Different Beat: A Family's Journey with Autism, which contains more anecdotes about how she brought up her kids.
Sarah Ziegel: In the first book, it was a bit of a hybrid. I would write about a difficult issue, a sensory issue, like hair cutting and how the kids scream at hair cutting and what to do about it, and tactics and stuff. And things that you can do to help.
Then I thought I would write little anecdotes just to say, actually, my boys would scream, we didn't go to hairdressers for years, but these days they will walk into a barber shop and tell the barber how they want their hair cut now, and that things move on and how much progress. It was that sort of, I know it's a trite word, but that inspirational stuff to say it was like that, but it's like this now.
So, I put little anecdotes in and then the reviews started coming back on the book, that people really appreciated the book, but they loved the anecdotes. They loved that personal, your family, what your boys were like, what they're like now, and then everyone would write to my blog and say, how old were they when they first said a word, how old were they when you did this, how did you choose this, what happened next, how did you manage all these things.
At that point I thought, Yeah, I need to write the memoir, because that's what everyone's asking. I need to write how I brought them up. I wrote a memoir from before they were born, when we met, Jonathan and I met, until they were 18, the twins turned 18. So, covering their whole lives.
Howard Lovy: After experiencing a number of disappointments with agents and publishers, Sarah finally decided that she would publish her book herself.
Sarah Ziegel: I was in the process of going back to trying to find an agent or a publisher, and then it dawned on me that actually I needed it to be in my words, and I thought, if an agent gets this or a publisher gets this that hasn't got a child like this, and wants to change the emphasis on my book or change the angle that I was coming from, I realized once it was signed, I wouldn't have ownership of it anymore, and I needed to be very true to what I wanted to say and how I wanted to say it. So, I decided to self-publish.
Howard Lovy: Turns out it was a great decision. She even won an award for self-published authors.
Sarah Ziegel: I get lovely reviews from people. I've had great comments, on my Facebook blog, and the nicest thing for the book was that somebody told me about a competition called The Selfies, which is one of the main awards for people who've self-published, and I was invited along to the London Book Fair this year in April because I was shortlisted.
I went along, I didn't dress up, and I wasn't expecting anything. So, I just went along, and they announced that I'd won it, which for the book is great, because with self-publishing, there is still this stigma that you self-publish your book because it wasn't good enough to be traditionally published.
It is still there, I've had people that reviewed my first book for special needs magazines, and various places who then haven't reviewed the next book once they've realized it's self-published, and dismissed it without reading it.
I don't think it's helped the sales particularly, but for me it's validation. It's also that, everyone says it, the imposter syndrome. I'm not trained as a writer. I haven't got an English degree. I don't belong to a writing group. I haven't done a course. I've never done anything. I'm a mum.
Howard Lovy: Sarah's favourite part about self-publishing is the control it gives her over her own work.
Sarah Ziegel: I think it's hard. I think the self-publishing is hard because you're on your own. You don't have publishers behind you, and you've got to navigate how to do it.
If you're like me, not very tech savvy, the panic of trying to load your book onto any of the websites you have to push it on, it's quite a challenge.
I was quite involved in my book cover because I had very definite ideas about what I wanted. So, I managed to find a designer who was happy to go along with me, but I think that's the best thing about self-publishing, you've got that autonomy to choose your title and your cover, and the words as you want them to be.
So, for me, that was a really big one with this book.