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:

 

Advertisements

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

Come on son, I know you can do it!

june1
When you have a child who is seriously struggling you would expect therapists, teachers and support staff to do everything they can to help. You put your faith and trust in them. They have years of training and experience behind them and have skills that a humble mother couldn’t possibly have. You send your child to school believing they will push him, encourage him and motivate him to bring out the best in him. You are in fact handing over your most precious possession to them in the belief that they have the necessary skills to help them. They have expensive technology, highly trained staff, a vast array of agencies at their beck and call to support them and the facility to give my child undivided attention.

If only life was that ideal. The reality is that budget cuts, lack of interest and time restraints often mean that some children fall by the wayside.

So when my son’s school notified everyone that the speech and language therapists were no longer going to give my child one to one intensive therapy and direct support, when his individual education programme showed no signs of pushing him to learn to speak and was heavily leaning towards getting him to point and use some pictures, when even his legal support document was threatened with being closed I decided I had no choice but to show them what I believed my child could do.

It seemed impossible.

While the staff and professionals working with Isaac all have the luxury of a full nights sleep, I am functioning on a few hours a night and some night less. While they are entitled to regular breaks, have the support of other staff and get paid a salary, I am balancing life with two children with autism, have very little training and get paid nothing more for working intensely with my child. They can go home at the end of a frustrating and emotional therapy and forget about it. I have to wipe my own tears, internalise my own fears and deal with the heartbreak of knowing this is not just any child I am working with, this is my beloved son.

It may not matter to them if they never hear my child’s voice. But it mattered to me.

Just weeks before his sixth birthday, not having spoken any recognisable word for over a year and a diagnoses of classic autism, Neurofibromatosis and global delay, the odds were not on my side.

But I had to try. It helped that he took a sudden interest in hand dryers and hair dryers but could not work them. So during half term week I decided to do some intensive interaction with him to try and get one word. I found him one day on my bed pointing to the hairdryer. Now was my chance. I modelled the word lots and let him see my mouth. I said the word and then turned on the dryer. His excitement showed I had a motivator. So every time he went on that bed I got into the room with him and worked with him to say a simple word. One syllable, just two little letters, not much to ask. But a massive mountain for my boy to climb.

Here is what day 5 was like: he was trying so hard:

But I wanted to show he could actually speak. I want to prove to everyone involved it is worth continuing to teach him to speak. I want them to see he is worth believing in.

And here is day 7:

It may not be too clear but he certainly vocalised a sound not unlike ‘on’. It may only be for the hairdryer, but it’s a start.

I am exhausted, physically. mentally and emotionally. Some days this week I could have easily given up. But love carried me through. And it was so worth it.

Don’t stop believing. Every child has potential. Despite funding issues, staffing constraints and time pressures I refuse to let anyone stop believing in my son.

He has so much potential. And I intend to prove that. I just need Isaac to do this with me.

Come on son, I know you can do it!

I just heard him say ‘mum’!

I’ve just had my mothers day present 4 days early. And it was priceless! My 4 and a half year old just said his first word and it was ‘mum’. Excuse me while I cry.

It’s not like it’s the first time I have heard ‘mum’ said today. His twin sister says it more times than my little ears can cope with some days. But this is the first word Isaac has said. I can not guarantee he will say it tomorrow, or next week or any time after that. But he said it tonight and that is something I will hold onto for the rest of my life. You don’t ever forget your child’s first word. And you especially don’t forget it when you have waited 4 years and 4 months to hear it. This split second will remain in my heart forever.

And the hope it gives me is incredible.

To get to this place Isaac has had learning support at home and at nursery, 14 months of weekly speech therapy, I have attended a four month course on how to communicate with my autistic child, and he has had daily one to one with countless nursery staff and other professionals. I have sang with him, read to him, played with him, prayed for him and did everything I could think of to help him. I have simplified my language and praised him for trivial things like ‘good sitting Isaac’, ‘good walking Isaac’ and ‘super waiting Isaac’. I have rolled balls to him for hours, ticked him to get a reaction, named all his favourite toys, whispered in his ears, stroked his hair and held him close. But most of all I believed in him.

Even though he has been making some slow progress recently I still wasn’t expecting tonight’s miracle outburst. Sometimes you just find yourself in a place where you continue on and wonder if any of what you have been doing is getting you anywhere. And then it happens: breakthrough!

And often when you least expect it.

Tonight was just an ordinary Wednesday night for us. The kids had been to their regular kids club for families affected by autism. Isaac went through his usual transition routine on coming home and the house was pretty calm. Dad started running a bath for the kids and I told them both it was bath time (Isaac’a favourite time of day as he just loves water!). Isaac understood the cue and began walking up the first few stairs to head to the bathroom. I followed behind and on the third step he stopped, turned, looked me in the eye and just said that magic word every mother longs to hear. “mum”. That was it. Nothing else. I could have kissed him, held him, never let him go. But that would have overwhelmed him. Instead I held his hand and we climbed together and headed for his favourite activity of the day. He was totally oblivious to the tears forming in my eyes and the faster beat of my heart. He had no comprehension of the miracle encounter that had just taken place. He was just happy to have my full attention and strip off and get in the water. That’s my boy!

Just two nights before this,when out in the car, his twin sister had asked, out of the blue, when her brother was going to get better and not have autism any more. And despite the fact she caught me unprepared (are we ever really prepared for the questions our kids ask?) I did my best to reassure her that her brother would always have autism but he could still learn to do lots of things she can do like saying words, playing with toys and going to school soon. With her usual 4 year old faith she replied “He will talk to me one day mummy. That’s what children do.” And then she went back to talking away about her favourite DVD characters once again. It wasn’t appropriate or important to correct her or break her faith. If she can believe her brother will talk, then so can mummy. So of course, she wasn’t even phased one bit by tonight’s miracle. She was expecting it so allowed her brother his moment of glory and then, like any child her age, took advantage of mum’s good mood and asked for extra toys in the bath! And the evening continued like any other.

Except something miraculous happened in my house tonight. We had a breakthrough. We reached a milestone. We shared a treasured moment. We overcame autism and neurofibromatosis type 1 and any other name you want to say my son has. He said a word…in context…with eye contact…with meaning. He touched my heart. He just called me “mum”.

Breakthroughs come when you least expect them. Never give up believing. Image