Sunday 22 May 2022

The books that helped us as our autistic kids grew up; from pre-school to teenager

I was pretty sure that our eldest was autistic before he was diagnosed. But it was still an odd feeling to hear it confirmed.  The paediatrician seemed to be expecting tears or questions and it made me feel nervous - it made the diagnosis feel like an occasion.

Our son had already started and been reviewed by several therapists including a speech and language therapist and an occupational therapist. I'd read basics about the condition. But I wanted.. needed to know more.  Books are one of the places I turned and I've read quite a few since and it's a place I've returned to as they have grown and developed. 

I've consumed ones with autistic characters, and would rate ones with autistic kid characters as some of my favourites.  But these books below are ones that I'd recommend to a parent as our kids have grown and (in some cases) matured and along the different stages of their lives to date. I hope you find them useful.

Autism parenting book - More Than Words

When they were first diagnosed - aged 4: More Than Words by Fern Sussman

In one of my son's first speech and language sessions, the therapist pulled this book out of her back to reference it.  A day later I'd ordered it on Amazon and then I consumed it within another day. More Than Words was written by a speech-language pathologist and is a guide to understanding and promoting the social and communication development of young children with ASD.

I saw my son in many descriptions and depictions in the book.  It's easy to use and provided a basis for turning every encounter with my son into an opportunity for communication.  I still pick it up now as a reference book as it's great at breaking down behaviours too.

When they were in their early years and primary education: 100 Ways Your Child Can Learn Through Play (Fun Activities for Young Children with SEN)

Once we had some understanding of autism and our kids we then wondered what to do to help them develop.  

This book by Georgina Durrant is helpful less in developing an understanding of our kids and more of a 'what do I do with them' type guide.  The 100 fun activities for young children with SEN are broken down into helpful sections so if a child is overstimulated and needs some sensory input you can turn to the Sensory play section, or if you are trying to extend a time they can sit and concentrate on a task at a table you can find things for them in the Sitting still  section.  

However, you can equally look in the On a walk or In the garden sections if that's where your child is comfortable... or if it's somewhere you'd like them to be more comfortable because they have a direction if they have an activity to do.

There are activities that you need some items for, wax crayons or pasta shapes but there are also those that just need you and your child for a few minutes. 

What I found very useful was the 'skills box' at the bottom of each activity.  It helps identify the key area behind the activity - for example developing motor skills, communication skills, working memory or emotional regulation that is a constant area needing support in our home.  

Book for autism parenting: The Reason I Jump

As my non-verbal son hit double figures: The Reason I Jump / Fall Down Seven Times, Get Up Eight by Naoki Higashida

The Reason I Jump  is the only book I've listed that was actually written by an autistic person.  Naoki Higashida is a non-verbal, autistic, Japanese author, who was just 13 years old when he wrote the book as a one-of-a-kind memoir that demonstrates how an autistic mind works. The chapters are short explanations often for his thinking or reasoning behind his actions - like for example why he feels the need to jump.

This book is less about helping with an autistic child, more about understanding where they may be coming from.  What I liked most about it was that it used the language of an autistic person.  As our kids grew and some of their communication improved I would find it still difficult to understand them.  This books helps with that idea.  And that in itself is invaluable.  

Fall Down Seven Times, Get Up Eight is his equally informative book into his perspective as an autistic young adult.  Sharing his ideas on things such as school, family relationships, travelling and the difficulties of talking. Like The Reason I Jump, he covers his behaviour and reactions to things such as a sudden change of plan, or the mental steps he has to take simply to register that it is raining.

Both books give an insight that can otherwise seem foreign and although you may not always be able to enter the world of some autistic children, it can give you an opportunity to see and learn through one - Naoki Higashida.

As they hit tween and teenage years: Left to their own devices - Confident parenting in a world of screens by Katherine Hill

So despite all the information above and the wonderful 100 things to do with my SEN kids, all of my children still spend a significant amount of time glued to a screen. 

This is not a bad thing.. David gets an enormous amount out of his iPad and I initially feared that this book was going to make me feel bad and tell me to get my kid of his screen.  After all is it called "Left to their own devices"! But it wasn't like this at all! It was actually so refreshing to read something that did not seem to be set up to tell me I was a bad parent for having kids in a digital age and allowing them to use technology! 

I don't consider myself un-techy, I mean I write a blog right? But I didn't even really need to go online for research at university that much - in fact in my first year, I had to wait in a line outside a small cupboard to access a computer that had a black screen with green type and had to call home on a pay phone.  Not pay as you go... an actual pay phone in a booth that had another queue outside it by my halls of residence.  

It's not the same for my kids... they are immersed in IT (and for that read 'it' and Information Technology) so they have a different relationship with it to me. And that's makes it extra tricky. 

Anyway, this is where this book by Katherine Hill was so good.  The book covered all the things I'm concerned about now my 14 year old spends hours locked away in his room with his only real interest being things he does on his phone.  WhatsApp and youtube are the top of the charts especially when mixed with his special interest in Formula One.

But what about online bullying, sexting or accidentally access online porn?  Yes, I'm petrified just typing those out. 

What I really liked about Katherine's book is that each chapter on some of the scary and not-so-scary parts of being online has a helpful section about 'what parents can do' and in some cases 'what to do if it goes wrong'. These are actually really helpful and make me feel like there is something I can do in a place I feel a bit out of control. 

So there you have it.  As soon as one of the kids hits late teens I'll update if I find anything else useful.  In the meantime,  if you have you read any helpful books recently - I'd love to know more.

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