How My Severely Autistic Son Used YouTube To Speak To Me


Isaac loves his iPad. It is with him from the moment he wakes until the second he goes to sleep. He has a few games he likes and he really enjoys looking through the photos but his all time love is YouTube.

He is pretty typical of many 8 year old boys in that sense. However there is something very different about Isaac: he has no spoken language at all. Isaac has severe autism as well as other complex medical issues and he has poor eye sight. He can not read or write and certainly can not type into a you tube search bar. He fumbles his way through you tube by clicking on random videos and spends most of his day flapping in delight at lift doors opening and closing over and over again.

When Isaac does listen to songs they tend to be very random or theme tunes of favourite programmes aimed at very young children like ”Peppa Pig’ or ‘Wooly and Tig’. He rarely allows anyone else to touch his iPad so he has to go on ‘rabbit trails’ through lift videos or episodes of Wooly and Tig to find anything different. Due to the nature of the video playing app he tends to be faced with a fairly limited repertoire but this has suited him immensely due to his need and love for repetition.

I am not afraid to admit I often struggle to parent my son. He gets frustrated (I absolutely understand that) and that can lead to hours of screaming or throwing himself down the stairs or hitting and pinching people. He has severe phobias of things I can not control like open doors or other children (including his sister) eating and drinking. His life has to be the same all the time which makes living with him quite restrictive. He is not toilet trained nor can he care for any of his own needs. Some days I get very low and I question ‘why us?’ My faith has been taken to levels of testing I never knew existed before.


Then one night last week I stopped what I was doing and just sat beside my son. I longed to hold him but I knew he would attack me. My love for him was overwhelming yet I was unsure if he even knew who I was. I sat beside him on his bed and I could feel the tears building at the back of my eyes. I have not been able to take him to church for weeks now because of his outbursts and his inability to cope with the slightest change. Had God forgotten about my child? Did my son have any idea of the world around him or how much he was loved? I was weeping for my child. My heart was broken both for myself and my son.
In that moment I heard words that seemed to come from God himself. A male voice I had never heard before. The words caught my heart before my brain even fully processed them..

 
“Don’t weep for me…”

What? My son was looking right at me smiling. He knew who I was and not only did he love me but he had something to share with me. He moved closer to me as his finger pulled the scroller on the you tube bar back to the start of where he wanted it to be…

Somehow, I believe from God himself, my non verbal severely autistic son with limited eyesight and no ability to read or write, had found a song on you tube that was saying everything HE wanted me to know…

Don’t weep for me, God made me this way. He’s chosen not to let me speak, but I hear every word you say…

Because the pieces of many colours symbolises what I am, it represents the hope of a cure that lies in God’s own hands” 

He pulled that bar back to the exact spot again and again as those words washed right over us both.
I was weeping for a child I thought I had lost but here that same child was showing me more than his own words ever could in a way so powerful, so emotional and so spiritual it was like God himself was in that room. 

I can not explain how he found that video. I can not explain how he understood those words and related them to himself. I have no logical explanation to the timing of me arriving in his room and him finding it or the fact he would scroll right back to the start of that chorus time and time again.
We sat there together for what felt like hours. The words of that song healing places in my heart I had not even realised were broken.

 
It was an experience I will never forget. My non verbal severely autistic son with complex medical and developmental needs brought me to tears by using you tube to communicate something I will never forget. 

Isaac can not speak to me but God can use any means he wants to give him a voice. That day he used you tube and this song.
Have a listen to what my son wants everyone to know:

 

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What if his challenging behaviour is actually a cry for help?

If you were walking home in the dark one night and heard a female screaming for help would you see those screams as challenging behaviour?

What if you were in a hospital and heard a child cry? Would you see that as challenging or would you be more sympathetic?

We all understand the lady screaming on a dark night is desperate for help. We all understand the child crying in hospital is scared and does not understand what is going on around him.

So why when my child with learning difficulties and autism screams and cries does everyone suddenly see it differently?
Professionals have labelled my child as having ‘challenging behaviour’. He kicks, pulls hair, scratches, bites, screams, cries, throws himself down stairs, throws objects in temper, head butts the floor, and attacks people. He is now almost my height and a third of my weight. He is only eight!
He can also be loving, gently, funny, happy, warm, lovely and wonderful. 

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Like the lady screaming in fright on a dark night there are times he is scared. Right now he is terrified of open doors. His anxiety soars making his adrenaline pump through his little body to an extent he has to react. His challenging behaviour is his way of communicating fear and anxiety.

Professionals tell us to restrain him, speak to him calmly and discipline him. Would we do this to the lady screaming on a dark night? Most people would in fact rush to help her yet people seem to rush to get away from my son when he has the same feelings of life being out of control. Both scream…both are full of fear…yet we call one challenging behaviour and the other simply a means of communicating for help in a desperate situation. Perhaps we need to realise both are the same?

Like the little child we hear crying in the hospital ward who is worried, in pain, and not understanding what is going on around him so too is my son at times when we take him places he isn’t familiar with or he doesn’t want to be there. Why do we have sympathy for a little child in a hospital ward yet look in distain at my son when he cries at the supermarket aisle? 
My son has no speech. Behaviour is his way of getting his message across. How can he communicate that he did not want chicken nuggets for his dinner? One way is to throw them at me. Instead of punishing that behaviour or seeing it as challenging I prefer to see it as communication and frustration at not being able to say what he wanted. I don’t want to encourage his behaviour but until I can teach him a better way of communication I have to understand his method of ‘speech.’

When he drags me out the door and onto the street some professionals feel I should ignore him or restrain him. How then would he be able to show me the reason for his fear?


Yes I would love him to be calmer, happier and less physical at times. I do discipline and teach him as his difficulties allow but I want society to stop seeing my child as simply having challenging behaviour and see him as a child crying for help exactly like a woman on a dark night or a little boy in a hospital ward.

 
Perhaps the challenge in his behaviour is actually a challenge to society? What if the challenging behaviour is actually a cry for help that we are all ignoring?

 
Perhaps in that case we need to challenge our own thoughts and not his behaviour?

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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How my sons inability to speak is tearing our relationship apart.

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This is something I have never written about before or admitted to anyone, but I have always struggled with my relationship with my son compared to his sister. I don’t love him any less nor do I favour one above the other but there is something that prevents me being as close to him as I am to his sister: his inability to speak.
The older he gets the more it is literally tearing us apart and that breaks my heart.

We are both trying, we are determined to try and overcome this but no matter what we do it is always there lurking like a dark shadow.

We play together, we ‘read’ together (well I read to him!), we share games and we eat together but it is incredibly hard to reach into him when he is non verbal. That breaks my heart. Having no spoken language at all really affects my son so much.

Having no language at all at almost 8 years old has forced him to be more independent.
He can’t ask for help or even ask for something to eat. So he uses his physical skills to open the fridge and help himself or open the front door and take himself out. The other night he took himself to bed because he was unwell. He has in the past brought me a cup or a bottle of juice and I have found him sitting at the table with an empty plate in front of him too. I would love to be able to hear him simply say ‘mummy, I have a sore head.’ Or ‘can I have something to drink please.’. He won’t always have access to the bottle of juice or cup to let others know what he wants.

Having no language is making him frustrated and angry.
imageI know if, like his sister, he could talk about his day at school and let us know what has upset him we could help him calm down and share his day with us. When he looks at a box of toys and points it is incredibly upsetting for him when we continually have to guess what it is he wants and we frequently get it wrong. He gets upset at certain programmes on the television but has no way of telling me why so he gets angry instead. He finds open doors highly distressing but has no means to tell me why so instead he becomes frustrated and violent. Speech would help us resolve all these issues. Some will be quick to suggest sign language or picture communication but these are so limited and his inability to make the right sign or find a relevant picture just make him even more angry and frustrated.

Having no language means he is at the mercy of others to communicate on his behalf.
Could you imagine having a wonderful holiday, printing out all your photographs and yet someone who wasn’t even there with you decides to tell everyone about YOUR holiday without allowing you to say a word? I am certain you would find that irritating and annoying and you would become very cross. This is what is happening every single day when I send my non verbal son to school. Adults dictate what information I receive on my sons behalf and tell me (if I am lucky enough!) about the experiences he has had. It’s not what I want. It’s not what my son wants either! He wants to be able to tell me about his day, his way! When I pick my daughter up from school she tells me about her favourite pencil breaking, the games she played at playtime and the funny shaped banana a child had in their packed lunch box! This is life from her perspective and something I can never ever get from her brother. A huge chunk of his day is a mystery to me and he has no language to enable that gap to be bridged. Have you any idea how difficult and heartbreaking that is for us both? It rips our relationship apart.

Having no language is life limiting for him.
He will never be able to read to me, or to anyone else. He won’t ever be able to use his voice to tell a joke or share a story. He won’t be able to sing or even give me cheek. As he gets older he will not be able to use his voice to ask a girl out or even say ‘I do’ on his wedding day. Asking the price of an item in a shop, asking directions, even telling the bus driver where he wants to go are all going to be difficult if not impossible. He is likely to need someone with him to support him throughout his life. Using a telephone is never going to be easy and connecting with other people will always be much more complicated.

We have tried alternative methods of communication. We spent years trying makaton but he can’t manage the signs himself and is struggling with picture communication too.

I know if he could speak so many things would be different. I know if he could speak we would be so much closer. How do I know this? Because he has a twin sister and my bond with her is strengthened every single day through language. She tells me about her day at school, her worries, her achievements. We play together and I join in her games because language enables us to play together. She reads to me and with me. She can tell me what she wants and I can listen. She shares her emotions, her ideas; her life with me through talking.

The more she talks to me the more we bond. The less my son is able to say the communicate the more our relationship is strained.

I am working on my relationship with my son every day. We have a very special bond and a deep love but there remains an invisible problem between us that is tearing us apart: the fact he is non verbal.

If I could change anything it would be that he would one day be able to speak to me. If only love could make him talk…

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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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When there is less like you

 

imageSeven year ago I started my journey of parenthood. It has been the most exhilarating, exhausting and enlightening journey ever. Over those years many have journeyed along with me but every year more of those people take a slightly different route. Every now and again I stop and look around, and while there are still many of you cheering me on, I notice as my children grow that there are less like me.

When my child was not speaking at aged one there were hundreds of others like me. That first birthday came and so many of us were yet to hear ‘mamma’ or ‘daddy’ and so we journeyed together for another year.

When the second birthday came along a lot of those children were now talking. It was beautiful. But some of us were still waiting. So we travelled on another year.

When the third birthday came I looked around to see some were crying happy tears as those precious words were beginning to come slowly. There were still others with me walking the path together of ‘is this autism’ or ‘should I be worried by now’ and we consoled ourselves together in our group. I wasn’t alone.

As we approached four I could hear some cheering us on. “This is the year” they would say, “Nursery will bring him on”, “he will soon get there!”. Hope carried me on as one by one more of my companions on my journey started to see their little ones develop and grow and finally speak.

There were less of us by now. The odds were not in our favour as much. Our children were starting school and still not speaking. This started to get serious and worrying and yet we continued to journey on supporting each other. As our special babies began school something changed. A few more, slowly but steadily, began to speak and the group became even less. As beautiful as these moments were it becomes more and more scary when there is less like you.

Still a few more trailed off by the time my child reached six. Therapists, teachers and parents rejoicing at little voices emerging years after they should. Miracles still happening.

And there we were, still waiting.

He is seven and a half now. And still not speaking. My true companions are few now and reality starts to settle in. Are we all here now for life? Is there still hope for us? Is there a time to say that the therapies are not working for our child? Our small group sub divides between those who have children using pictures to communicate and those who use sign language. Some are even managing both! We start to celebrate communication instead of language.

Then there is my son: Seven, no language, not using picture communication and only mastering three basic signs.

It is lonely here in my world. It really is hard to stay positive. It gets harder to find stories of children like mine. Sometimes it feels like we were forgotten. I admit it is heartbreaking when there is less like you..

But the longer we wait…the more of a miracle it becomes.

So we keep on waiting..even if we are left waiting alone.

When the first sign is every bit as wonderful as the first word

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It was a day like any other. Often this is the way in life. Days come and days go and right in among what becomes everyday and ordinary, something quite amazing happens.

It was a Wednesday. That much I know.

I had dressed my son, made him breakfast and checked his school bag had everything in it he needed. Unlike other seven year olds he had no pencils, no homework or reading book and no snack in sight. His bag is full instead with wipes, change of clothes, spare nappies and his home/school diary (my lifeline of communication with his school life).

Communication is so vital for families like mine. We can not ask our child about their day, or listen to them read to us, and due to the physical distance from home there is so little contact with school staff. There is no regular coffee mornings, or weekly assemblies parents can attend and I never get to pick up my son at the school gate and chat to other parents.

This is the reality of children who, for whatever reason, can not attend their local mainstream school. It can be tough. It is the harsh reality of having a child who can not talk or who has communication difficulties.

While my brown eyed boy was never far from my thoughts, in real life he was actually half an hours drive away. And that day he was reaching a milestone that I had no idea about.

On Wednesday 20th January my son learned his first sign. For families like mine this is every bit as massive as the average child saying their first word. The beauty, the joy and the celebration is just as special. The moment deserves sharing and recording. Yet none of the baby books have a page to record the day your child first signed. What a precious moment they are missing out on.

I had no idea he had had such an amazing breakthrough in his development. Like so many parents who hear about their baby taking their first steps, or riding their bike for the first time and feel so devastated that someone else got to witness it before them, I too felt just as heartbroken.

The obstacles my son overcame to achieve this moment, the perseverance and dedication of staff in his school, the concentration required of my son, and the co-ordination skills required all worthy of celebrating on their own merit.

A whole new world of communication may just be beginning to open to us. He may finally have a voice.

It was a day like any other. That was until I read his school diary and I cried.

To me the first day he signed is every bit as wonderful and significant as the first time any child speaks.

It is precious. It is beautiful. And it is worthy of recording.

You see days come, and days go, and sometimes right in the middle of the ordinary something quite amazing happens.

On Wednesday 20th January Isaac signed for the first time.

**this post originally appeared on firefly** http://www.fireflyfriends.com/special-needs-blog/specific/raising-kids-with-special-needs-the-first-sign-is-as-good-as-the-first-word#.VreyK3LXVfo.facebook

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