How Google Street Map Has Given One Non Verbal Autistic Boy a voice

img_6258

If there is one thing my son Isaac has taught me in the last 8 years it is this:

 
Communication is much more than words.

 

Isaac has severe autism. He has no spoken language. He has global delay, significant learning difficulties and NF1. He struggles with lots of things in life ,but yet there is one thing he excels at and has done for a few years now: he has taught himself to communicate via google street map!

It is a different way of communicating, but for him it works much better than speech or any traditional communication app.

Wherever I take Isaac, wether it is somewhere he is familiar with, or hundreds of miles away to a place he has never been before, he has a special talent of retracing the exact route once home using just google street map and his incredible memory.
In the summer of 2014 when he was just six year old we went on holiday to a cottage 120 miles from home yet a week later he retraced the exact route we travelled including stopping at the very same service station we took a comfort break at!

I was amazed that a child who has no understanding of numbers or letters and barely turned when his name was called could hold such an incredible talent. I was sure it was a one off.

img_6259He attends a school for children with complex needs and is transported there in transport alone for his own safety due to challenging behaviour and seizures. His school is 14 miles from home yet he takes himself there by memory via google street map every afternoon once home and sitting in ‘his’ chair. I put this ability down to the fact he does the same journey daily. I wondered if he had the location stored.

One day I watched him.

img_6256

What I witnessed gave me an insight into part of his world I can never be a part of and which he could never tell me about. Watching him use google street map gave me peace of mind as he showed me step by step the route his taxi goes and even where the car parks to get him out…in fact he even took me to the door of the building he goes into! All without speaking a single word

He uses google street map for his every communication need now.

If he is hungry he goes onto the street map and travels from his home address to a restaurant nearby and brings his iPad to me to show me.
If he wants to go out he uses google street map to show me where he wants to go, from the church he goes to every week, to the train station, and the local park. He takes himself to his grans house and to shopping centres to tell me he wants to go and watch lifts.
He has discovered he can enter a local hotel using google street map and this has opened up new unique ways for him to communicate too.
He tells me when he requires his continence products changed by taking himself to the hotel, going inside and finding the toilets!
He goes into rooms in the hotels and finds an ensuite to communicate he wants a bath at night. When ready for bed he moves around the rooms until he finds a bed and points to it.
He finds my car in the driveway to ask to go in the car.
He finds a clothes shop in the high street to ask me to get him dressed.
When he was highly distressed one day and I could not stop him screaming I put on google street map and he moved around until he found a house with a door open to show me that there was a door open somewhere he could see and this was what was causing his distress! I was in awe of his ability to find such an ingenious way to communicate.

Two weeks ago though he shocked me once again. He was more lethargic than usual and quiet (he may not speak but he makes a lot of noise!). He came and sat beside me and used his skill on google street map to take himself to the doctors surgery! For the first time ever he was able to communicate that he was feeling unwell! This was incredible. I cried. It was nothing serious thankfully but to be able to say he communicated he was not feeling good to a doctor was amazing.

Isaac is not a genius. He can not write his own name, dress himself, read or write or use cutlery. He requires round the clock care. He can not speak one word. He is severely autistic yet he has found a way to connect with others that is as unique and special as he is.

Google street map has helped millions find their way in life but none more so than one non verbal autistic little boy named Isaac.

img_6257

Why being ‘autism friendly’ is much more than a gimmick

img_6046

Did you know that last week Britain’s second busiest airport (London Gatwick) became the first airport to be ‘autism friendly’?
Where you aware that last weekend the international toy retailer toys r us held an autism friendly event throughout the uk?

It seems the whole concept of being autism friendly has taken wings and grown and it is now common place to hear of autism friendly cinema screenings, autism friendly museums and libraries, autism friendly times in trampoline parks and soft plays, and even autism friendly Santa’s grottos!

A quick glance online and I even found autism friendly cruises!

But what is this autism friendly stuff all about and is it just a marketing gimmick?

According to Wikipedia Autism friendly means “being aware of social engagement and environmental factors affecting people on the autism spectrum , with modifications to communication methods and physical space to better suit individual’s unique and special needs.”

In practice for most places this means what the retailer Asda advertised recently as a ‘quiet hour’ where all unnecessary noice is reduced to avoid too much sensory stimuli. Autism friendly cinema showings for example have dimmed lights rather than complete darkness and a more relaxed atmosphere.

However there is much more to this than just turning the tannoy down! The National Autistic Society now has an award for being autism friendly but to get this prestigious award retailers and towns or businesses must do much more than just reducing noise or creating a more relaxed atmosphere. Criteria for their award includes having autism friendly customer information, having staff and volunteers who have an understanding of autism, making the physical environment more autism friendly, having the customer experience autism friendly and promoting understanding of autism. For anyone to go to that level is far more than just a marketing gimmick; it is costly, time consuming and takes a lot of motivation.

So why do it? And why single out autism?

What if I told you there are around 700,000 people in the UK living with autism – that’s more than 1 in 100? If you include their families, autism touches the lives of 2.8 million people every day. 79% of autistic people and 70% of families said they felt socially isolated.50% of autistic people and families sometimes don’t go out because of concern about people’s reaction to their autism. Autism friendly events have a potential to attract a huge market for businesses and towns as well as showing tolerance and understanding that reaches many more besides.

What about other disabilities?

This is the beauty of autism friendly. Autism is a huge spectrum involving difficulties to varying degrees with communication, social interaction and social imagination. Some will have learning difficulties or mental health struggles. Autism friendly events are there for everyone regardless of diagnosis or difficulty. They are as accessible to the Down syndrome community or those with genetic disorders. They are accessible to those with physical difficulties or challenging behaviour. No-one will be asked for diagnosis or membership to access any autism friendly event of any kind and therefore what is helpful for those with autism is as open and accepting for anyone facing any difficulty. We are all in this together.

img_4175So why do I care? I recently took my severely  autistic son with me shopping. He made noises, flapped his hands, laughed loudly and generally had a wonderful time watching a lift door open and close again. He can not speak. He has the mental understanding of a baby despite being 8. He is still in nappies. As the lift door opened a stranger looked at my son in disgust and said “I have come here to do my shopping, not see the likes of THAT!” I cried. It took me a long time to feel I could ever take him out again. I am not alone.

When Victoria Holdsworth approached toys r us in 2014 to ask if they would consider doing an autism event to help her son Joe she had no idea how much the entire autism friendly concept would take off. We owe her so much.

Now there are entire towns looking to become autism friendly. Liverpool has a huge campaign and councillor Mandy Garford from Dartford has a determination to make Dartford autism friendly too.

This is much more than a gimmick. This is an entire movement expanding across the UK that says to autism parents like me ‘we see you and we care.’

Do you care too? Please help by sharing this blog, supporting autism awareness and thinking about how YOUR town, business or place of work could also be autism friendly too.

Maybe one day less people will then call my son a ‘that’.

Being autism friendly is much more than a gimmick..it is a monumental change that makes the world much more accepting to children like mine.

img_6047

Autism: should it affect medical treatment or not?

Everyone deserves the best medical treatment possible at all times. No life is worth less than another. What happens though when someone can not understand treatment, or convey pain, or communicate…should they be treated differently?

Here is my story.

My son is seven years old with a diagnosis of non verbal severe autism, learning difficulties and Neurofibromatosis type 1.
Let’s stop there and make this much more personal. Here is Isaac, a cheeky, lift loving, teddy chewing, energetic, loving seven year old.

image
Isaac has had some major medical tests recently to help find out more about what is going on in his body and mind given his medical condition and difficulties communicating.

He had an EEG. This came back abnormal.

He had an MRI under general anaesthetic. Yesterday we had the results. He has microphthalmia is his right eye which means he has no vision at all in that eye. His left eye has an optic glioma, a type of brain tumour.

As I said Isaac has severe autism. Should this affect how he is treated for his optic glioma?

We have two options at present.

The first is watch and wait. The tumour may never grow and his vision may remain stable. No-one really knows.

This option relies on regular eye tests, regular MRi’s and the patient communicating any changes to his vision or health.

This is where autism poses a problem. Isaac has yet to be able to carry out a conventional eye test. He shows no interest in picture cards, can not identify numbers or letter consistently and has no means of communication or even understanding any changes to his vision. MRI scans involve general anaesthetic and therefore come with risks. The MRI can identify any tumour growth but has no way of knowing any symptoms the patient may be having.

Should my sons autism affect wether we take the risk of watch and wait?

The second option is chemotherapy. That comes with huge risks and is highly invasive. Isaac would have no understanding of the medical treatment and struggle with any changes. We would once again have no knowledge of how it would be affecting him as he has no language. This could make managing the treatment very problematic and challenging.

Do we risk chemotherapy on a child with such limitted understanding and awareness?

Before any of this happened to me I would have argued that no child should be treated any differently medically just because they have autism. The fact is you HAVE to treat them differently.

Whatever decision is made by my sons medical team in the next days and months will all come down to his autism as much as his medical challenges.

I trust my sons team. He has some very skilled medics on board but there will also be communication specialists too. Why? Because his autism DOES affect his medical treatment in a very big way.

I stand by what I said at the start. EVERYONE deserves the best medical treatment available at all times. It is just, in my sons case, autism has a major part to play in what the best medical treatment is. That is a fact we can not ignore.

The decision is somewhat out is my hands. Isaac has no say in it either.

Autism affects so much about my child and in his case it affects his medical treatment too.

I am so grateful for doctors who understanding this.

image

The less they get, the happier they are

imageIt is the day after Christmas Day and if social media were to be believed my children have been pretty hard done by. Except they haven’t.

By society’s standard in the country I live in we are considered to have little income. But in actual fact we are very rich indeed.

This Christmas my children received less than many others. Much of what they had yesterday was second hard or given by family. Yet this truly has been our best Christmas ever.

Both of my beautiful twins have a developmental neurological condition called autism. Despite being seven year old my son is unable to speak and has significant communication difficulties. He can not ask or show me what he would like as a gift at any time of year and only plays on rare occasions with toys suitable for infants. My daughter has zero concept of peer pressure or current trends and instead likes to re-enact things she has seen on TV or a DVD. She likes simple, small toys that she can line up.

So I decided this year to give them the Christmas THEY wanted. I was brought up as one of four children with extended family of uncles, aunts and grandparents and a minimum of twelve people at the table for Christmas dinner every year. I loved it! My children would hate this!

So we socialised less. We had less people here; in fact we had no-one around on Christmas Day at all and we all stayed home.

We ate less. The kids had no selection boxes or sweets at all and instead had some fish bites and chips for lunch and sausages and mash with baked beans for dinner later on. We never even had pudding. Not because we could not afford it but because no-one was bothered.

We were at peace. We were content. The less we got and did, the happier we all were.

imageIsaac loved a simple book. And a toy toaster that only just cost marginally more then the wrapping paper I used to wrap it in! A family member bought him a plastic jar of magnetic letters. It brought him huge joy and despite being described by professionals as ‘own agenda’ and ‘in his own world’, he gave me eye contact and smiles and vocalised to get me to tell him the letters and numbers as he showed me them. An inexpensive item bringing priceless moments of love, communication, connection and education.

imageNaomi had a new DVD and some small characters. But one of the things she loved most was a small game of bowling which she used her new characters to play with time and time again. Turn taking, fine motor control, imagination and maths skills all coming into play in a toy that cost just a few pounds. And together we spent some beautiful time together playing a game of dominoes that cost half the price of a roll of sticky tape bought to wrap the gifts in! Gran bought her a tub of Lego and she helped me make a pencil. That pencil became a magic pencil that wrote letters and passwords all over the house.

A few days before Christmas I came back from a meeting at my sons school to a note through my door. All it said was there was a parcel in the bin for me. When I went to retrieve it I discovered two bin bags of wrapped gifts for my children.image I have no idea who did this but it was such a beautiful act. One box was full of second hand transformer type toys. My son has fiddled with these and my daughter is fascinated by the moving parts. Another gift was a craft set my daughter loves and another was some children’s make up which Naomi says will make her even more beautiful. (I don’t believe that is possible!)

It has been a very simple Christmas, by choice rather than need. The children got less but in doing so we ALL got more. More in the way of quality time with them, more peace, more calmness and more appreciation of the things we so often take for granted. For the first time they were not overwhelmed or pressured and neither were we.

I love Christmas; I always have done. But this year my children taught me the true meaning of it all. Baby Jesus was born in the most humble and basic of circumstances and in our humble Christmas this year we found a closeness and a magic we have not had before. My children showed me that the less they get, the happier they are.

Well apart from love that is! You can never ever have too much love!

image

When someone says, “It’s only autism”

imageTwice now I have heard the paediatrician confirm ‘Your child has autism’.

Have you any idea what that feels like?

Hundreds of times I have found myself telling someone else that one or both my children have autism.

The responses are interesting. They range from shock to sympathy, from confusion to comfort, from understanding to utter ignorance.

A few times people have told me it isn’t that bad, it is ‘only autism’.

Before I go any further I need to tell you I am so grateful for my children. I adore them. My son attends a school for children with severe and complex needs and he mixes every day with children who have life limiting and severe medical and developmental needs. I am involved with a charity that supports children with Neurofibromatosis and know personally of children with brain tumours, undergoing intensive chemotherapy and struggling with pain. Every time I take my children for hospital appointments I count myself blessed. I know there are thousands, even millions of families in the world worse off than mine.

The biggest issue my children both face is autism. But it isn’t ‘only autism’.

When you say ‘it’s only autism’ it can sound like it is something minor, insignificant, that it has little to no effect on them. That could not be further from the truth. According to the National Autistic Society autism is ‘a life long developmental disability…’ In other words my children with autism will one day be adults with autism. They will always have it. When you say ‘only’ I think of a cold or a sickness bug that is minor, time limited and will leave no major problems. My children’s autism is none of those.

Autism affects how they speak. One of my children has no speech at all aged 7. He may or may not be able to speak as an adult. What is ‘only’ about that? I find that very significant and life limiting for him and us. Many children and adults with autism have echolalia, selective mutism or difficulties being understood. These are all significant speech and language issues that need intensive support.

Autism affects what they wear. They both have huge sensory issues and rigidness. My daughter refuses to remove her school fleece even on the warmest of days and my son went two years only wearing his school jumper every single day. Some children with autism strip off even in public, others are unable to wear shoes and many have issues with everyday items like socks. It may seem trivial in comparison with what others struggle with but dealing with this daily is exhausting and debilitating for so many.

Autism affects what they eat. I have one child with autism who has no concept of edible and non edible at aged 7. He would eat plastic as easily as mashed potato! I have another who refuses food due to severe anxiety. Millions of children with autism have limited diets or severe eating issues. The stress parents face at every mealtime is anything but ‘only’.

Autism affects their play and social skills. My son is locked in his own world. He has little awareness of other children and with no language he is unable to really interact with others. My daughter has no natural desire to talk to other children other than one friend and last year preferred talking to flowers to talking to children. She likes rules and sadly people and social events don’t always comply with rules and she gets confused. My children are vulnerable and always will be. That is scary.

Autism affects how they learn. My son has significant learning disabilities. This is not uncommon with autism. My daughter learns best from visual stimulation which is not always how things are taught in mainstream school. They need patience, understanding, repetition and consistency. So many things take longer. They won’t ‘grow out it’, ‘be fine’ or ‘snap out it’. My son won’t suddenly learn to read or write or talk. It takes time and intervention and therapy. None of that is ‘only’.

I could go on and say how it affects the way they understand and think. It affects how they interpret emotions. It affects their sleep and self esteem. It affects their mental health. It affects their ability to face new situations and cope with change.

And it affects me as their mum.

Yes there is so many things worse than autism. I would never ever argue with that. But autism is still a serious condition for so many, my children included.

It may be ‘only autism’ to you, but it is far more to me, my children and thousands of others too.

Why is it always about children?

100_0137

March is fast becoming my busiest month. Last year, quite by accident, I found myself making a video to mark autism awareness day on April 2nd. Within 24 hours I had been sent over 150 pictures of children from throughout the UK, mostly by people who I had never met in person, and within a few days I put them together in a video along with some music. It was all new, and hurried and compiled without a great deal of deeper meaning. And in my enthusiasm, innocence and haste I never really gave it too much thought. I was more worried about copyright laws and technical issues of teaching myself how to make a video and upload it to you tube than I was about thinking about any deeper questions. But a year later I look at that video and ask myself one question?

Why is it always about children? See for yourself…

We are approaching autism awareness day once again. And if anything it highlights to me again how much it always seems to be about children. You would think autism was a childhood condition. You would assume that at 16 or 18 autism ceases to affect someone. But that could not be further from the truth. My children (yes they are still very much children and so I am as guilty as the next autism parent of making it about children) will both grow up to be adults with autism. It is a life long condition. There is no cure.

There are reasons why it may seem we hear so much more about children with autism than we do adults. Here are some of my thoughts as to why that is:

1. Children touch the heart-strings more. Charities get more money when children are involved. The innocence and vulnerability of little children seems to open up even the coldest of hearts. So like any condition, if it affects children, everyone is keen to go down that angle. A crying child, a clearly disabled child or an ill child seems to be so powerful. And with autism being a hidden disability it can be so tempting to show children in this light just to bring our cause to the forefront and show that autism can be just as devastating to a family as many other conditions. I have done it myself. And so much publicity about autism does it too. Because it works.

2. The majority of people with autism are diagnosed in childhood. When you first find out your child has any condition your natural instinct is often to find out more and to find others in the same position. And so support groups are born. It is natural to want to promote your cause when it has suddenly became all-consuming to you. Newly diagnosed families often need time to talk, vent and ask questions. Professionals don’t have the time and the after care is seldom there. So when opportunity comes to promote awareness parents of newly diagnosed or young children are often the first to want to be involved. They are desperate for support, inclusion and a sense of being part of something that makes them feel like they are helping their child.

3. Young children are not so aware of what is happening. This is something I am acutely aware of. My son has classic autism with learning difficulties and severe delays. He currently can not speak. His awareness of the world around him is very limited and although that may increase in time he is unlikely to understand difficult concepts like public perception, peer pressure, vulnerability and susceptibility. He may never understand, for example, the implications of having a mother who blogs about it. His twin sister, however, may one day be much more aware. She may have embarrassment, anxiety or upset at the thought of her image being used to promote autism awareness at some point. And I would be wrong to ignore her feelings on the matter. So parents of older children and adults are faced with the issues of protection and permission that parents of small children are not.

4. The more children grow up in a society of inclusion the more they do not wish to be seen as different. As more and more children and young people with autism attend mainstream schools and colleges the more pressure there is on them to not stick out. For many older children and adults autism awareness brings with it the reality that they have not actually been able to overcome their difficulties and somehow their disability is still visible. For a few this will bring major anxiety. For some adults this would involve admitting to work colleagues, neighbours and friends that they have a condition they have yet to discuss. So they would much prefer anonymity. That has to be respected.

5. After years in the system weariness can set in. Can you imagine 20 plus years of lack of sleep? Can you imagine having to fight every day of your child’s life for twenty plus years just to get basic support? Some of these families have been through so many campaigns, so many fundraisers, so many promotions, that they can almost feel it has seemed pointless. They hear stories of families with younger children still fighting for things they fought for many years before and it can become so disheartening so they disengage. But we still need to be aware of them. And we still need to support them.

6. Not all awareness is positive. Parents of older children and adults have come to realise this more and be using wisdom more in how to make people more knowledgable of autism. There is something to be said for this maturity.

As we approach autism awareness day remember, like everything else, we all deal with autism differently. We are all on a journey and sometimes it can appear to just be about children. When you next see an image like this bear in mind that there is a reason why you are seeing a child. But this girl will still have autism when the toy rainbow has long been forgotten. And she will still have autism when awareness day has passed by too.IMG_2182

Just this once

image

Those of you who follow this blog, or know me from social media, will already be aware that my six-year-old twins are educated in very different schools miles apart. As a mother you just get used to these things.

You get used to seeing different coloured school wear in the washing pile when you once thought it would only be one. You get used to doing homework with just one child when you always envisaged it would be done in duplicate. You get used to writing a daily diary for one but not the other. You get used to them leaving and arriving home at different times. You get used to only holding one little hand walking to school.

But just because you get used to it does not mean it stops hurting.

While I love both my children’s schools and know in my heart that both of them are currently in the right placements to support their needs socially, emotionally, as well as academically, I still have that vision of walking them both to school and talking to them both about their day.

It was part of that dream. It was part of that ‘deal’ when I became a parent of twins, it just seemed to be an unwritten law that my children would go through life experiences together. And some days that dream is hard to let go of.

It is the biggest irony in my life that autism separates my children to the very same degree it unites them. They both have the same diagnosis, they both share the same triad of difficulties, they both have delay in similar areas, yet since the age of two and a half they have been separated in their education.

From then on fairness became impossible. One gets school trips when the other doesn’t. One has homework every night while the other gets to play. One gets swimming, the other doesn’t and so on. But the hardest of all is when they have different days off.

And this is what we have this week. Despite both schools being in the same local authority they are having different training days for staff and therefore I have the problem of explaining to my children why one has to go to school when the other doesn’t. For the one who leaves earliest and comes home latest (and who also has the least understanding) the day when his sister was off has had little impact on him. He has no idea what she wears so never even noticed she wasn’t in her uniform that morning. But when I have to walk Naomi to school while his taxi won’t be coming for him on Wednesday I know we are going to have a problem.

We don’t do change of routine very well here. And Isaac does not do the whole ‘not going to school’ thing. He barely copes with not going at the weekend let alone on a day when he should be there!

So I have come up with a plan. I have revived my dream. On Wednesday morning I am going to pretend for one day that everything is how it should have been. I am going to take two little hands, talk to two little children instead of one, and walk to school with both my twins. Just this once.

And thanks to the wonderful staff at my daughters school I get to do it at home time too. Isaac will walk with me to collect Naomi and he has been invited into her class to meet her classmates. He will have his talker with him with a pre-recorded message for the children. I am emotional just thinking about it.
image
His sister is so excited and proud to show off her brother. The school is willing to give me time to introduce him and let him ‘say’ hello. And I get that magical experience of walking both my children to and from school together. It has always been my dream.

It may only be for one day. But I WILL get that experience.

Life is about moments to treasure. And on Wednesday I can pretend all is well.

Just this once…
image