What it is like to parent a child who can never be left alone

When your baby is born you promise them the world. You promise to look after them, keep them safe and be there for them. When they are tiny and lying so innocently in your arms fully dependent upon others to meet all their needs it is so easy to promise them you will never leave them.
The reality is though that children grow. As they grow they need to learn responsibility, resilience, and independence and all three of these require periods of not being constantly supervised by a parent. I want to say I never ever set out to be over bearing, or a so called ‘helicopter parent’ or paranoid in any way.

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Unfortunately though life changed the way I parent my son. He has multiple difficulties and wether I want to or not he simply can NOT be left unattended at any time, even at age 8.
Going to the bathroom is such a huge risk I leave the door wide open so I can see him and hear him, or I take him with me. Simple tasks like tidying the kitchen can only be done if I am able to see him completely or he is in the same room as me. If I leave the house for any reason I have no choice but to take him with me. I can only shower or bath when he is at school unless there is another adult here to watch his every move. Even popping to the car in my own driveway is a risk I can not take most days.
I do not want to live like this but I have no choice. I am fully aware how damaging this level of hyper-vigilance is to my son and to myself but I am actually doing it because there really is no other way. School have to show the same level of vigilance as do his respite centre so it isn’t just me.

He simply can not be left alone, ever.

Here are a few reasons why:

1. He has no language.

That poses huge risks. He can not ask for help, or shout if in danger. He can not ask to reach something that could fall on top of him and he can not tell us where he wants to go. So I have to be with him.

2. He has no concept of danger. 

He would open the house door and stand right in the middle of a motorway and have no idea. He would eat grass or dog faeces or climb out a window. He would play with knives or drink bleach. I can not leave him for his own safety.

3. He sensory seeks all the time.

He seeks out water but can not swim. He seeks out lights…even if these are car headlights. He loves the noise of smashed glass…he climbs…he swings on doors…he bites and kicks…for his own safety and the safety of others he MUST be supervised.

4. He is violent.IMG_0449

One minute he can be the most loving, gently child but that can change in a moment and he can attack someone. While I know some of his ‘triggers’ for the safety of his sister he can not be left in a room alone with her or anyone else.

5. He smears.

As awful as this is to talk about it is real for so many families. Left alone for less than a minute and so much damage is done. No-one benefits from the clear up and the less it happens the better for everyone.

6. He eats everything.

Bedding is a current favourite but we have had clothing, toys, jigsaws, paper, pencils, lego, teddies and money all eaten regularly. The danger of that is very obvious and unless we wish to have a season ticket to the local hospital he MUST be watched.

7. He destroys.

He is the master of opportunity. Sensory seeking, no concept of danger, little awareness of cause and reaction and no understanding of empathy mean he has fed his sisters tropical fish milk, talcum powder, full tubs of fish food and several Thomas tank engine trains. He has thrown and broken expensive technology like iPads and cameras, he has blocked the toilet with all sorts and poured all manner of things into the bath tub. While he may have no understanding of his actions we do and it is vital this behaviour is prevented as much as possible. The only way to ensure that happens is to be always vigilant.

8. He has seizures.

Medically the consequences of leaving him unattended could be fatal. He has had seizures at the top of flights of stairs, outside and during the night. He could choke on his own vomit, badly injure himself or knock himself out. He must be watched.

9. He is vulnerable.

While he may be living in his own ‘bubble’ sadly he is at high risk for bullying and abuse or wandering off. As his mother I have to protect him. That means having to be with him. It is hard to trust when he has no communication to tell me anything.
People tell me I need to relax and that he needs to learn independence. What they don’t understand is that he never will be independent. The level of care he has now is what is likely to have to be in place throughout his adult life. It really is the only way to keep him safe and to keep others safe too.

I am tired. I cry. My life is severely restricted by the needs of another person. If I want my son to stay alive and have any quality of life I have no choice but to never leave him alone.
What’s it like to parent a child who can never be left alone? 
Lonely.

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

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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.

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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.

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The ten types of selfies I get with my son with autism

This is a tale of the very real issue of trying to get a selfie photograph of me and my son. Isaac, aged 7, has non verbal severe autism. Here are my top ten attempts at having out photos taken together. I won’t be offended if you laugh…some of you may even relate!

1. The ‘climb all over mum’ selfie. 

2. The ‘iPad is of more importance’ selfie
3. The ‘screaming’ selfie. 
4. The ‘he did it himself’ selfie.


5. The ‘EEG’ selfie.


6. The ‘spaced out’ selfie.


7. The ‘do you want a piece of plastic toast mum?’selfie.


8. The ‘I’ve just pulled mummy’s glasses off and find it funny’ selfie.


9. The ‘surprise mum from behind’ selfie


10. And last but not least the standard ‘look at the camera and smile’ selfie.


We totally nailed that one Isaac!

I haven’t included the ‘won’t stop flapping so we only get blurry pics’ selfie or the ‘I like to be naked for pics’ selfie or the 3,413 blank screen pics he took before he worked out to press the forward camera button when the phone is on your knee either!

After 2458 outtakes I shall finish with this ‘I just got new glasses so mum wanted a selfie’ one which actually is pretty ok considering.

*Please note no mothers or sons were harmed in the making of this blog.

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.

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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.

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My son has the type of autism that is not a hidden disability

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My son was running away from me in the supermarket yet again. I had held him tight as we went through the checkout but let go of him for a second or two to pick up my bags. That was all it took. As I chased after him towards the automatic front doors and into a very busy car park I noticed a stranger was gently holding his shoulder.

“Is he yours?” she asked as she saw the sweat appear on my forehead.

“Yes”, I puffed as I once again held his wrists.

“He has autism and he is heading right for the car park lift. Thanks for your support.”
“I knew right away he had autism. You can tell.”
If I was given just a small amount of money each time someone told me something similar I would be rich.
My son has the type of autism that is NOT a hidden disability.

So what makes his difficulties and diagnosis so obvious?
Is it the fact he flaps and stims CONSTANTLY? I really means constantly! He can not sit or stand still. He shakes things, chews things, flaps things, flicks things, squeezes things and licks things all the time. It is impossible to NOT notice it. His body movements are not hidden.
Is it the fact he can not talk? That may seem like something you would think would not be noticeable but to hear the noises he DOES make it is pretty clear to most people that these are not noises you hear everyday. His noises are not hidden.
Is it the fact he screams? He can scream longer than a fire alarm and more high pitched that a whistle. He screams randomly and inappropriately whenever he feels like it. There is nothing hidden about that in any way.
What about the fact he is still wearing nappies? As much as I try not to show this he thinks nothing of pulling up his top to chew or pulling at his trousers making it obvious. He has no social awareness and no understanding. Yes he could be incontinent for any number of reasons but combined with his noises and movements it adds to the number of reasons why people realise right away upon meeting him that he has autism.
He runs, he flaps, he obviously has learning difficulties, and he behaves quite differently to other children his age. He is sometimes in a wheelchair for his own safety and if I have not got the energy to run a marathon while doing my shopping then I often use a disabled trolley for convenience.
He would rather spend hours at hand dryers in the bathroom than anywhere else in a store, unless they have a lift. He is entertained for hours just watching lift doors open and close and open and close over and over again.
He is unmissable. He is loud. His tongue is more out of his mouth than it is in. He is handsome, cheeky and adorable. I don’t hide him and I don’t hide his autism. He doesn’t hide his diagnosis either. In fact he flaunts it.

People see him and people see his autism. 
Sometimes they don’t react very well to that. Other times, like the beautiful stranger today, they see a child with obvious difficulties and look out for him.
They comment, they look, and they react because my child has the type of autism that is NOT a hidden disability.
For many who are not as severe as my son I understand why autism can be a hidden disability. But it isn’t true that it is a hidden disability for everyone.

When our worlds collide

I fell in love with my children long before they were born. I will never ever forget that moment I first held them skin to skin. There was a bond that I felt could never ever be broken. I felt they were a part of me from the moment I found out I was pregnant. I loved feeling them move and kick and hearing their little hearts beat at every check up. I was connected to them. Our worlds were one and we would always be close.

Then autism entered my family.

That is not my sons fault in any way. I don’t resent him or blame him but I, as his mother, need to work so much harder to connect with him.

He lives in another world to me and I admit I have,at times, cried over that. I want that bond we had when I first held him. I want that special connection of looking at his eyes and seeing into his soul. I want to hear his voice, cuddle him, stroke his hair and share life with him.

imageHe prefers to look out windows, flap at lift doors and laugh at hand dryers.

Some days we are like strangers living in the same house. I meet his needs, he does what he wants. I create a routine and he follows along just because it is what we do here. Eye contact is fleeting, often non-existent. Words are never used. Body contact is on his terms and never conventional. When we try to understand each other it is like we speak in different languages or live in different planets. I try my way, he tries his way and often we both end up upset.

So when moments come along I throw caution to the wind and go for it in any way I can.

Today while on a train journey he sat beside me and we had some physical contact that did not mean climbing on my head or hitting me. We just sat beside each other. That was it. I felt like I was right back there the day he was born looking down at him filled with love and wonder and pride. A short moment in time when our worlds met and our hearts collided. Unity.

Later on as we got off that train and headed back to the car he did something so rare it took my breath away. He reached out and held my hand. Touch brings healing, restoration and love. He sought me out. He knew who I was and he wanted to know I was there. He did something other parents take for granted but something that is rare in my world. A short moment; two worlds coming together, no words needed.

Tonight as I bathed him, dried him, and met his physical needs I knew our bond was different yet still strong. Unlike his sister who spends bath time chatting, sharing and playing, he spends it simply splashing and retreating into his own world.

I read him his story, the same one I always do, but tonight there was no vocalising, or flapping, or pointing. Those little moments of coming into my world today had tired his mind and his emotions.

The irony is he is so fiercely independent yet completely dependent at the same time. He wants to be left alone yet he can never be left alone. He wants to live in his own world and I am the one continually trying to change that. It’s like the more he gives to me the more he has to be back in that bubble again for safety. He had had enough tonight. But I hadn’t. He was ready to be put down in that baby crib in the hospital to sleep and I was longing to hold him that little bit longer all over again.

I kissed him. I tucked him in and then I went to leave the room. Except I couldn’t.

So I broke my own rule and climbed in beside him. I expected him to scream, to push me away and wrap himself in his cover like he always does.

Instead he wrapped his chunky arms around me, snuggled in and smiled at me. He fell asleep right there in my arms, just like he did the day he was born seven years and five months previously.

I may never hear his thoughts and worries. I may never truly understand his sensory needs or fascinations. I can’t be autistic like he is.

But tonight I was right back there hearing his little heart beat and promising him the world.

Today, for brief moments in time, our worlds collided.

A moment is all it takes to connect.

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Sometimes a simple yes or no is enough

imageMy son doesn’t speak. But ever single day I speak to him. And I hope.
I tell him what we are doing, where we are going and who we will meet. He may have difficulties communicating but his understanding is improving all the time.
He is 7 and about 7 months ago he developed a very precious skill of being able to shake his head to communicate ‘no’. It was a moment of breakthrough. Prior to this we had screaming which could mean anything from yes, no or leave me alone. You could take you pick but if you were wrong the screaming just intensified.

He was so frustrated. And so was I.

Sometimes we just need a simple yes or no answer. That is often just enough.

I have mastered the art of understanding my precious son. I have had the privilege of seven years of learning his ways, his body language and his expressions. I can see his tears before the first drop falls from his eyes and I know what will make him laugh before any sound emits from his mouth. With patience we taught him to tap our hands to make a choice but we still could not get a consistent yes or no for simple questions. He could choose between two things. Would you like mashed potato or chips? Would you like to go to the park or swimming? But when faced with him fussing we could never get a clear answer to something as simple as would you like something to eat? Are you in pain?

Those were the times when just a simple yes or no would help us all so much.

This weekend as we went about our business I looked back at my children in the car and reminded them both we were on our way to the hairdressers to get their hair cuts. As I turned again to face the front I heard something that made me jump. I had just heard a voice I never ever dreamed I would ever hear! It was loud, unexpected and forceful. It was beautiful, perfect and simple. My son shouted at us! He shouted ‘no’! Thank God I wasn’t driving or we may have crashed. As I turned to look at my wonderful boy my heart missed a beat. I was smiling, yet crying. Rejoicing, yet weeping.

He just said NO! It was enough!

No doubt I should have not put him through the stress of that hair cut having clearly heard him voice his objection. But believe me when I say it badly needed done. I needed to see his stunning big brown eyes and he needed to have better vision without seeing nothing but his long brown locks. He hated it. But he survived.

Back home I longed to be able to share that moment with so many of you who follow his journey. So I tried to get him to say it again. I asked that poor boy so many questions willing him to prove he could do it again. He didn’t.

He actually went one better!

Dressed in only his pyjamas I asked him if he liked the rain. (He hates it!) and he made a sound. It was indistinguishable. I asked if he wanted his coat on (he hates his coat!) and again he made a noise but it was more of a grunt. I was determined! I asked him one final question: would you like to go out? And clear as anything he stood up, headed to the door and said ‘yeah’.

He said ‘yeah’!!!

Sometimes a simple yes or no is enough.

Do you know how long I have wanted to hear just yes or no? With Isaac that has been seven years. But with so many other things in life it has taken even longer. When I struggled with infertility for 9 years all I wanted was a yes or no answer to the question, would I have children? When I was told my children had autism I wanted a yes or no answer to questions like will they ever get a job?, will they live independently? When my boy was diagnosed with neurofibromatosis I needed a yes or no answer to will be need medical treatment and be ok? Now I want to ask professionals things like will my son ever be toilet trained? Will he ever be able to have a conversation with me? Will he ever have friends? Some days I want to ask God, are you listening?

I want to know so much. I long for so much. I am believing for so much.

But sometimes just a simple yes or no is enough to keep me going for a very long time.