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This week I was honoured to receive an advance copy of Forever Boy to review. It jumped straight to the top of my pile because I knew it would be amazing. Written by Kate Swenson, a mum of four who has blogged and shared her family's experience of autism much like I do, this book is an honest, emotional and thought-provoking account of what goes on in the life and mind of a mum who finds herself with a child who is 'different'.
Kate lives in America and for the last few years she has been sharing her thoughts on her Facebook page Finding Cooper's Voice, and her blog of the same name. One time, she recorded an emotional video that subsequently went viral, leading to TV appearances, but also to a lot of hate being directed at her. Unfairly in my opinion; Kate is a mum who loves her children above all else and wants to do the best for them, and I think that definitely shines through in this book.
Over the past twelve years I have read a lot of books on the topic of autism. I'm sure I'm not alone in that. I think most parents who walk out of a paediatrician's office after their child has been diagnosed autistic soon find themselves with a wobbly stack of non-fiction books by the side of the bed, or on the floor. Most of us don't have much time spare to read them because of the extra attention and care that our children need, but we try hard to make time. We have a thirst for knowledge, hoping someone will somehow show us the way forward, offer us suggestions of how to help our children maybe.
After my lightbulb moment, my focus zoned in on Pathological Demand Avoidance literature and I'm pleased to say there are now many books published about PDA, with more coming out over the coming months. The more the merrier as far as I'm concerned, although they are making my blog post 'Books about Pathological Demand Avoidance' extremely long and I'm not sure Google loves that so much!
I've widened my sphere of interest to include ADHD and tics after these began to play a part in our life last year, and I do have other books still to review on the wider topics of autism - masking, girls, anxiety for example. This book sits in an autism sub-category of its own I feel; it's a personal account of feelings that includes lots of great advice for other parents and carers - but not in a patronising way! It's a book I very much needed to read, and a book that I think many parents of autistic children will relate to.
Kate takes us on the journey from when her first child, Cooper, was born, up to recent times (he is now eleven). Cooper was diagnosed with non-verbal autism at the age of three and Kate was told to prepare herself for the fact he would likely never talk - I'm pleased to say he has proved that suggestion wrong!
Although there are clearly parts to her story that are different to ours, there is so much of it that is very similar and directly relatable. In particular, a lot of the feelings. With her writing, Kate has been kind and brave enough to share those feelings she experienced, in order to help other parents and carers in similar situations feel less alone.
It's funny, isn't it, because I think few people would wish it upon others, to experience the difficult or down times that they have had, and yet there is definitely comfort in knowing that others have gone, are going, through those times too. The old saying 'a problem shared is a problem halved' rings true and it definitely works both ways - it helps both the sharer and the person being shared with. Feeling that someone else understands your difficult times, really understands, because they have experienced similar, helps us to feel less alone and less isolated.
“The list of places we could go successfully was shrinking by the day. I wondered if he was purposefully sabotaging our outings. I continued to make excuses. Saying he was teething or not feeling well, because I truly didn’t know why it was also hard for him. I couldn’t figure it out. It was almost like he didn’t know how to “just be” present. Every situation seem to send him into hysterics.”
There were a few quotes from the book that jumped out at me. This one above is very similar to one I have already written in my own book (albeit referring to our daughter, not our son!). Other experiences early on, such as struggles with being in a car seat, suggestions of hearing issues and waking early/not sleeping much also rang very true for me. There are also several examples of behaviour that might mean more to PDA families, such as these quotes below:
"I knew my son was smart. I had taught him his letters, numbers, shapes, and colors, and he could point to the corresponding one when I asked him to. But for anyone else, he wouldn't do it. All questions were met with his version of no. He refused to sit or play. And even harder yet, he couldn't be motivated. There seemed to be nothing that he wanted to work for. Not treats or toys or iPad time" and "in our world, nothing is left up to chance. To have success, we need a plan."
Kate also writes about the feelings of loneliness that come from having a child who is different, and the change in mindset that we need to make to switch away from wanting all those expectations we had of what life with children would be like, to finding the true joy in the experience we are lucky to be having instead.
Honestly, there's so much more of this book that I would like to tell you about but instead I'll just urge you to order a copy and read it for yourself. You won't regret it, I'm sure. Forever Boy is available for pre-order now from Amazon and will be released on the 5th April.
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