Support Network

One of the really important things for parents of autistic children to think about is finding a support network. Never underestimate the importance of surrounding yourself with people who understand your situation and care about you. Isolation is one of the worst things that an autism parent can experience.

But how can you go about creating a support network? The key is to find others who are in a similar situation to yourself and to reach out.

If your child goes to a special school, you could try and get chatting with the other parents at the school gate, or during coffee mornings or "get togethers" at the school. Hopefully these people live locally and you may be able to arrange to meet up and socialise outside of school hours.

The internet is also a great source of support, with many groups and chatrooms dedicated to parents of autistic children.

There may also be specialist groups in your local area, so it is well worth finding out what is available.

Real friendships can be made, with bonds that last a lifetime. And it is lovely to know that there is someone who understands the difficulties you face and can share the highs and the lows, giving encouragement when needed and a shoulder to cry on.

So what are you waiting for? Don't isolate yourself! Get networking! And if there isn't a group where you live, why not create one?

Getting an ECHP as Home Educators

This is a blogpost I wrote for the Family Fund Blog last year.

I'll start with a little background history: Our son has autism and ADHD but was in mainstream school until year four. At the time, he was on 'School Action Plus' which is a step below a full statement. But because he was just about keeping up with the rest of the class academically the school would not issue him a statement, despite his having significant communication, social and self-care difficulties. He was deeply unhappy in a school system that was inadequate for his needs and we ended up making the drastic decision to home-school, for the sake of everyone's sanity.

Three years later and although home-schooling is working well for us, it does present a few problems. We no longer have as much access to speech and language therapy and educational psychology provision that was available in the school setting. We are essentially 'off the grid', which raises real concerns for our son's future, as he will not be able to continue in further education when he is older without some sort of care plan in place. With this in mind, we decided to apply for an EHCP.

The good thing about the EHCP is that it considers ALL of the child's needs and not just the academic ones, making it a better fit for our circumstances. Assessment was slightly different for us, as our son is not in school, so we were assigned a key worker from the local Special Education Needs (SEN) team to help us through the process and then had a visit from an educational psychologist to assess our son. Having no school staff to back up our application, I had to rely on letters from doctors and specialists - thankfully I had a whole ring binder full of them.

The application has to go through two panels. We got through the first one without any issues, and are currently waiting for our case to be heard by the second one. A draft plan has been drawn up by our key worker outlining our son's needs and the provision his school will have to make to accommodate him. We also used a third-party charity called KIDS to look over our application and make sure that the wording was acceptable. I would definitely recommend doing this, as their advice is invaluable and they have a LOT more experience in EHCP applications than I do!

So for now, it is a waiting game. Our draft plan is ready and we are hoping that the education authority can find an appropriate school place for our son. The sad thing is that it never should have come to this. If adequate provision had been made when he first started school, we wouldn’t be going through this now. It is a very stressful time and because our case is unusual, I have no idea how successful we will be.

My thoughts and best wishes to anyone going through the EHCP application process right now.

*Update- Our application was successful and now our son is in a special school that fits his needs perfectly. The process was tricky but I'm so glad we managed to succeed in the end.

Restarting the Blog After a Long Break

I always loved writing this blog but in 2016 I decided to close it down and stop writing.

I had a couple of reasons for doing this that felt important to me at the time.

Firstly, I felt that my son deserved his dignity and privacy. When parents write blogs about their children, the kids don't really have much say in what is being put out over the internet for all to see, and that doesn't really seem fair.

Secondly, I had been "told off" by a fellow blogger, an autistic lady, who told me that as I am not autistic myself, I'm no expert on autism.

So...I've made a few changes. I've gone back and updated some of the previous posts and deleted things that I felt were too personal. I'm making the focus of the blog more about PARENTING autism rather than being about my child specifically. I've kept a few of the old diary entries because they really sum up how I felt about things at a particular point in time and I think that it may resonate with some readers.

Hope you enjoy the new improved blog, and if you have any suggestions for topics, please feel free to leave a message!

Book Review: Neurotribes by Steve Silberman

I wrote this review a few months ago for the Bookbag website. I'd like to share it with my blog readers for Autism Awareness Week.

Neurotribes is is an ambitious book. It aims to challenge the widely-held perception that autism is a disability, or a developmental delay. One of my favourite quotes from the book is this:

One way to understand neurodiversity is to think in terms of 'human operating systems' instead of diagnostic labels... Just because a computer is not running Windows doesn't mean that it's broken.

This refreshing approach underpins the whole of this ground-breaking work, which is essentially a potted-history of autism from the distant past to the present day. It will fascinate and enlighten anyone with an interest in the subject, or who is affected, directly or indirectly, by the condition. For autistic people, this book represents their roots; their cultural history, and illustrates how far the autistic community have come over the past few decades.

Although we tend to think of autism as a relatively modern condition, Silberman explains that there have always been autistics among us, even if they were not recognised as such at the time. He cites the example of the wonderfully eccentric Wizard of Clapham Common and the brilliant Serbian inventor Nikola Tesla, who, as early as 1926 predicted such innovations as the internet, television and mobile phones. We also learn about the darkest period in the history of autism, during the Nazi era, when children with disabilities were routinely murdered or experimented upon. It makes for harrowing reading.

On a more positive note, we see how the genius of autism contributed to many of the technological advances and innovations that we use on an everyday basis. Indeed, in one of her most famous quotes, autism advocate Temple Grandin concluded that the maker of the first stone spear was likely a lone autistic at the back of the cave, rather than one of the yakkity yaks chatting around the fire.

Silberman also looks at the many different methods used to cure or treat autism over the years have been largely unsuccessful and argues that, rather than looking for a cure, we should be embracing neurodiversity and making the world more accessible to people who think differently.

Neurotribes is a well-researched and intelligently written book that manages to successfully explain how autism went from being a relatively unknown condition to one of the fastest-growing diagnoses in the western world. It is, in part due to the fact that the criteria for diagnosing autism are constantly being reviewed and changed as knowledge of the subject increases.

From the point of view of a book-reviewer, it was quite an achievement to read this weighty tome from cover to cover; as a reference book, it is not really designed to be read that way. But I'm glad that I did, as it gave me a unique insight into the autistic world. I thank the author for his thorough research and the publishers for my review copy.

Autism Awareness Week

I just had to write a blogpost this week, because it is Autism Awareness Week, and that is what we do!

The National Autistic Society are leading the way with a ground-breaking campaign called "Too Much Information." They are focusing on sensory overload and the frustration that it can cause to autistic individuals.

My son has a lot of problems with sensory overload, particularly strong smells, sounds and flavours. This can cause a lot of anxiety when we go out.

They say a picture paints a thousand words, so to illustrate the idea of sensory overload. The NAS have released a short video, entitled "Can You Make it to the End?" It is about a boy visiting a shopping centre with his mum, but he sees things very differently to everyone else. Please watch it, it is an eye-opener.

Autism West Midlands Fun Day

A couple of weeks ago, we attended our first family fun day event, run by Autism West Midlands. They run lots of different events and workshops all over the West Midlands, including pampering sessions, information days and courses. This particular one appealed to me because we were able to attend as a family, and it was not far from where we live.

I thought I'd write about it so that anyone considering attending one would have an idea what to expect.

The event was held at a large community venue that used to be a comprehensive school. I didn't feel that it was the best venue for the event, as the building itself was quite claustrophobic, with lots of narrow corridors, making it quite hard for us to find out where the event was being held! Luckily, there were some handy signposts and plenty of lovely, friendly staff on hand to help us.

The event was held on a Saturday morning, which posed a problem for some families, including ours. A lot of kids attend Saturday morning clubs, so quite a few people were turning up at about midday and missed some of the activities like the arts and crafts class, fire safety workshop and pony rides.

When we arrived, my son made a beeline for the fantastic disco bouncers; small bouncy castles which were dark inside and had disco lights and loud music. All of the kids seemed to love them and got very excited. It was lovely to see a group of kids who would normally have social issues, playing together and having fun without judgement.

We went inside to check out the indoor activities. The arts and crafts table still had a few bits and bobs left on it, so my daughter sat down and started paining some cards. My son had his face painted my an amazing face painter, who complied with his slightly unusual request to be Bowser, the villain from the Super Mario series. She did a fantastic job and my son spent the rest of the day channeling his "inner Bowser" and roaring at everyone.

We then went into another room to watch a pantomime, but unfortunately my son had trouble sitting still and didn't manage to watch the whole performance. I liked the way that the performance was relaxed, though, and the actors didn't seem to be fazed by the kids in the audience shouting out and moving around.

The staff were all fantastic and it was nice to go to a place where nobody is giving you funny looks or looking at you in a judgemental way. This was a place that we could truly relax and be ourselves, knowing that others understood us completely. It was such a nice feeling.

I'm truly grateful for organisations like AWM that put on events like these for families affected by autism. We really do appreciate it.

Autism Diagnosis is not the End of the World

I was reading the Daily Mail today (bad habit, I know) and I read a headline that made my blood boil:

SHATTERING MOMENT I HEARD THE ONE WORD THAT EVERY PARENT DREADS

The article was about the journalist's personal experience of finding out that his son had autism. The article itself was quite interesting, once I'd ignored the parts about him trying to "cure" his son. The son, incidentally, grew up to be a fine young man with a good job and a girlfriend, so I'm not exactly sure what all the fuss was about.

It was the headline that really annoyed me. The one word that every parent dreads? Really? There are a lot of things that I dread, but autism isn't one of them. Autism isn't deadly. It won't kill you. It isn't the end of the world.

I was actually hugely relieved when my son got his diagnosis. It meant I actually had a name for his condition and that I could get the support and help that we needed.

I wonder how the journalist's son felt when he read his father's article? I wonder how he reacted, knowing how his dad felt about his autism and the idea that it was something that needed to be "fixed?"

Autism isn't an illness. It is just a different way of viewing the world. Maybe I'd change the headline to this:

JOURNALIST PROMOTES THE ONE THING THAT EVERY AUTISM PARENT DREADS: IGNORANCE.