Never Underestimate Anyone, However Much They Struggle

2020 has been a year most want to forget but even more so for my family. Even before any virus was in the news my family faced difficulties. Back in January my elderly mum fell and broke her femur.

After an operation and a stay in hospital I went from full time caring for two disabled children and carer for my husband to also being full time carer for my mum.

At 75 her recovery has been long and painful and my children have had to adapt to granny not being able to do many of the things she did before, which hasn’t been easy for them as their own struggles and autism make adapting to change hard.

For my 11 year old son it’s been especially hard. He is non verbal with significantly high care needs himself. Unable to read or write, severely autistic with learning disabilities, epileptic and with a large mass on his brain, coupled with vision impairment and a progressive genetic condition, he very much lives in the moment and, so everyone thought, is pretty much unable to imagine the difficulties of another person.

But one day he showed us all why we should never underestimate anyone, regardless how much they appear to struggle.

I had my mum with me as I was taking Isaac to the park. He ran ahead, as always, giggling and flapping with excitement. He didn’t look back once as he headed for the gate, pulled it open and headed for the familiar frames and slides. Seeing him ahead and knowing he was safe I supported my elderly mum so she could see her grandson playing.

Isaac did his familiar (and very rigid) routine, climbing up the smaller easier equipment and sliding down the slide built for children half his age. He then moved to another area, circling the equipment as he always does and flapping. Eager to enjoy her grandson at play my mum ventured down to where Isaac was.

But then Isaac decided his rituals were complete and he began to make his way back up and towards the gate as I watched from nearby. I was torn now between helping my elderly mum with mobility difficulties or chasing my vulnerable non verbal son who has no sense of danger.

But just then my mum called to her grandson:

‘Isaac wait for gran! I need help. Gran has a sore leg.’

As I waited to stop my son escaping so I could help my mum I watched in astonishment as my son stopped, turned and paused. What happened next blew me away and has taught me a lesson I will never forget.

My son, the most unlikely helper, a child still fully dependent on help himself, unable to verbally communicate, not able to read or write at 11, processed the pain and need for help of another person and responded perfectly. He turned and headed right back to his own elderly gran, reached out and took her hand, and guided her safely back through the park.

As I ran down planning to step in and help I found I wasn’t needed so I just took my phone out and snapped this beautiful picture to always remind myself to never ever limit my child again.

Yes my 11 year old is autistic. Yes he’s non verbal. He absolutely has significant and high care needs and always will. He’ll always need 24/7 care.

But that’s not all he is. He’s also a compassionate, loving, wonderful boy who can show the world that we should never limit anyone, regardless what difficulties or struggles they face in life.

Everyone has potential, even the ones who appear to struggle the most.

Breaking seven years of silence: how a mute ten year old found a way to let her voice be heard

I asked my ten year old if I could share this story, because after all it is her story not mine. She answered emphatically ‘yes’ adding that ‘make you you say that ‘everybody’s voice needs heard mum’ So I’ve made sure to get that bit in first.

So let me give you some background:

This is Naomi, my daughter. She is a twin with her brother having very complex needs including severe autism, epilepsy and severe learning difficulties. He can not speak verbally, which makes her statement about ‘everybody’s voice needs heard’ even more significant and powerful. Naomi herself is also diagnosed autistic with a further diagnosis of anxiety and an eating disorder. She also has a condition known as selective mutism: in many situations Naomi is so overcome with anxiety she is mute.

One of the places she has always been mute in is school. She started education at just two and a half and when she was first enrolled in nursery they didn’t believe me when I said she had a wide vocabulary and spoke clearly. She showed no signs of that in the nursery setting and in her two and a half years at two different nurseries she never once spoke a word: not one single word. She never sang a nursery rhyme, never answered a question and never even spoke to any other child. She smiled, cried and took part in some activities but she just never opened her mouth. By four she was formally diagnosed with the speech condition selective mutism.

At home she continued to gain language quickly and used it confidently. Her voice was clear, strong and beautiful and it was hard to imagine the idea that no-one else was able to hear this.

Naomi started school at five and continued to go all day at school without speaking. While her school were very inclusive and supportive, despite all sorts of inventive ways of easing her anxiety, Naomi continued to find it too difficult to speak. She did have one friend and by her second year in school she slowly began to speak to her one friend, though only outside of the classroom walls, primarily in the playground. This was only by whispers so that no-one else could hear.

She would tell me that she wanted to speak but whenever she opened her mouth the words just didn’t come out. She said it was like they just disappeared. She learnt to adapt to a life of mutism is school and her peers gave up on trying to get her to speak by half way through year 1.

Nativity plays came and went, as did class assemblies, but she could never have a speaking part. I knew she could speak but I seemed to be the only one. It was like we had this secret life at home where she would talk away but outside the home her voice disappeared and she lived a life of silence.

She would be given reading book after reading book yet whatever teacher she had they never once heard her read. Her year 1 teacher hoped her year 2 teacher might find the key to open her up. She didn’t. Her year three teacher was fantastic, but still Naomi was unable to speak. Her year four teachers had no luck either. No-one failed, it just wasn’t to be. Naomi wasn’t ready.

Naomi would often say how she would like to answer her friends, or join in games or read in class but mostly she just became used to the fact ‘I don’t talk’ and it became just how it was. Then one night three weeks ago she came out of school and I knew something was wrong. She cried the whole walk home. She cried most of that evening and the next night and the next night too. It was the week before Burns night, a traditional celebration in Scotland of a well known poet. Schools often mark the occasion by having children recite Scottish poems and Naomi’s school were no exception. This was Naomi’s fifth year of having such a task, every year prior being met with ‘I don’t talk’ and that was that. But this year something changed: Naomi loved the poem so much she wanted to memorise and recite it like her peers!

She actually wanted to speak!

But wanting to speak wasn’t enough. She still could not bridge that mental and physical gap. She couldn’t overcome her all consuming anxiety. That was the cause of the tears: the conflicting desire of wanting to do something so badly but knowing she couldn’t.

It was heartbreaking.

Then one morning I had an idea. I suggested it to Naomi and her tears turned to excitement. When the class were asked to chose a partner to practice their poems with and no-one chose her she just sat alone silently learning the poem to herself. She knew why her peers hadn’t chosen her and she wasn’t upset at them.

Naomi practiced. I practiced. I felt like our secret was closer than ever. Together we had a plan, though I had no idea if it would work.

Then three weeks ago, on Monday 21st of January, the night before my birthday, Naomi and myself performed that poem as if we were on that stage at school. Naomi was relaxed in her pyjamas in her own room. She spoke clearly and confidently having spent hours memorising the task by heart. On the chair in front of us was my iPad and I pressed record.

As we watched it back Naomi smiled and said simply ‘I did it.’

I asked if I could send it to her Head Teacher. She agreed and requested I also share on my Facebook page. But she wasn’t ready for her teacher or her class to hear her yet.

The next morning she woke and announced suddenly ‘Mum, I would like my teacher to hear my voice now. Can she see the video today?’

So I took her to school five minutes early and her teacher watched the video directly from my iPad. She unashamedly cried. She asked Naomi if she wanted the class to see it. Naomi smiled and nodded.

The following day, on Wednesday 23rd January 2019 a class of nine and ten year olds in a school in Scotland witnessed something very very special. As the pairs of children in turn recited their poems to the class and Naomi sat in silence cheering them on, the teacher ended the session with a little clip that changed everything.

For the first time in five years Naomi’s classmates heard her voice for the first time ever, as she casually and effortlessly recited the same piece they had all been learning, via a video playback of her recording at home.

Some children watched open mouthed, some cried. Every single one cheered and many hugged her.

Two days later, with Naomi’s approval, the Head Teacher showed that video to her entire school. Naomi told me staff and children were in tears.

Naomi gained every award going that week: star of the week, Head Teacher’s award and even an invite to have hot chocolate with the Head for going above and beyond!

Two weeks have since passed. Naomi is still selective mute. She’s still very anxious and still autistic. She hasn’t spoken yet in class directly or to her peers.

But they, and now the world, know that she can.

If and when she is ready she may one day speak in person. There is no pressure.

The fact is she did it. She broke seven years of silence in the only way she could. She proved that her voice counts. She proved she could.

Her message is strong and powerful and needs shared.

‘Mum, make sure you you say that everybody’s voice needs heard.’

She says it better than I ever could.

Here is that special video. Here is the moment my daughter broke seven years of silence.

I Used To Worry About My Autistic Child’s Future Until I Met An Adult Just Like Her

All parents worry about their children: Will they make good healthy choices? What if they get hurt? Will they have friends? How will they cope with handling money? Will they be safe?

It’s standard parenting really to worry.

That worry is amplified if your child is autistic. You worry even more about them misunderstanding language, making friends, and being independent because they are more vulnerable and different to their peers, and because society isn’t yet as accepting and embracing of difference as it should be.

I worry about both my autistic children but for very different reasons.

My son is profoundly autistic. He is, however, likely to have the support he needs throughout his life because his needs and difficulties are very obvious to people. The fact he has no spoken language, he has significant medical issues and severe learning difficulties on top of his autism mean that my worries for him are more about will he carers look after him, will he be understood, will he be respected and so on.

With my daughter, who is also autistic, but who has no accompanying medical issues other than anxiety (which is huge and I would never underplay that), and certainly no learning difficulties, my worries are very different. I worry about people taking advantage of her when she is socially naive to their motives. I worry wether she would manage a work environment with her unseen and often misunderstood sensory difficulties. I worry that her communication difficulties and social anxiety will mean she is isolated and unsupported. I worry that her naturally caring nature and very tender heart would mean she is vulnerable to bullying and cruelty.

I try to never let her see my worries but they are always there. When she struggles with change at school on days like sports day or comes home in tears because she had been unwell and unable to tell anyone. When her anxiety is so high she has panic attacks and nose bleeds and I am powerless to make everything right.

She worries about everything and I worry about her.

Then I met Tom on a social media group. I say ‘met’ him but he was a stranger posting on a group both by commenting on posts relating to my daughter (and other posts too) and writing his own posts. Very quickly to us both it became obvious that Tom and my daughter had so much in common. Examples included little things like the fact:

1. They both preferred to sit on hard surfaces like the floor instead of traditional furniture like armchairs and sofas. Naomi spends hours a day, often all day, playing on the floor. It turned out Tom does that too but as an adult to relax in other ways like watching TV.

2. Naomi really struggles with needing personal space. She builds barricades out of toys to create circles around her that no-one can enter. Tom struggles with personal space at work in a similar way.

3. Naomi takes language literally timing me for example if I was to say ‘I will be back in a minute.’ Tom was struggling with the same thing and mentioned misunderstandings at work and with his family due to the same literal understanding of language.

4. I mentioned in one post that Naomi was terrified of flies, wasps, bees and any other small flying creatures. Tom was reminded of the time his parents told him he was so scared of bees he refused to get out the car.

5. Both Tom and my daughter would rock to self soothe.

I could go on but the resemblances continue to grow the more Tom posts about his life and the more he reads about my daughter.

Coming across an adult who is so like your child is incredible. It gives me hope when I once had worry, it excited me when I used to fear and it inspires me when I was once disheartened.

I know Tom isn’t my daughter, but with so many similarities I feel we were meant to meet to ease my worries. You see Tom is independent, he has a full-time job, he has friends, and though he struggles with isolation at times he never loses hope and he never stops trying. Of course he still has struggles but he did well educationally and he has achieved in so many ways. He lives the sort of life I hope my daughter might have one day but yet I worried wether it would happen.

Tom only found out he was autistic as an adult. My daughter was diagnosed aged 5. Tom doesn’t live in the same country either and his family life and dynamics are different. Yet the similarities are just enough to make me feel encouraged. What is even more important though is that hearing about Tom is helping Naomi.

While my daughter isn’t on social media yet I have been telling her about Tom. She is amazed at the similarities (have I mentioned Tom even shares her birthday?) and so encouraged to hear that while he may have some struggles (don’t we all, autistic or not?) he is achieving, happy and doing well.

She may never meet Tom but that doesn’t matter. We don’t have to meet people in person to be encouraged or inspired by them.

My daughter will one day soon be an autistic adult. Hearing about an adult just like her has been life changing for us both.

Thank you Tom.

I used to worry about my child’s future until I met an adult just like her.

If only every autistic child could meet an adult just like them too. Believe me when I say it really is life changing.

Could you Spare a Few Minutes to Make Christmas Special for one Autistic Boy?

Hundreds and hundreds of people all around the world have already joined in. It is a simple ask but something that will be life changing for young Isaac.

Here is why:

Isaac is 9 years old and lives in South Lanarkshire. He is the oldest of twins and he has complex needs. He has a diagnosis of severe autism, significant learning difficulties, he is unable to speak and has neurofibromatosis type 1 which has caused a tumour on his optic nerve and on his brain. He does not play with toys but he absolutely loves lifts (elevators to those in the States).

Isaac does not cope with change. He finds Christmas a huge challenge especially when he can not get the sensory enjoyment of watching and going in lifts. Although he watches lifts on YouTube as his parent I am very aware of the language used in many of these videos and would rather he was not hearing such vocabulary. Every time Isaac is distressed (which is daily) or frustrated or bored he only wants to see or be in lifts.

He loves any sort of lifts. He is a regular at the lifts in the supermarket car park, fascinated by the numbers, the voice saying what level you are at and the excitement of the words ‘door opening’. He loves to press the buttons, watch the doors and watch others getting in and out. This is not a recent thing either as his love of lifts has been ongoing now for over six years and shows no sign of abating.

The problem is on Christmas Day and New Year’s Day it is very hard to find a lift that Isaac can watch or go in as everywhere is closed. Isaac does not understand the concept of closed or have any idea about Christmas. There is no toy he longs for and he has no idea who Santa even is. All he wants is to be in a lift or to watch them. When he can’t he self harms and screams for hours.

Can you help Isaac?

Gemma Bryan, a friend of mine who I have yet to meet, decided to make this Facebook page up in the hope a few people would take some pictures and videos for Isaac that he could watch during the Christmas holidays. Please check her blog out here

The lovely Marc Carter at Little Blue Cup then shared Isaac’s story on his website and Facebook page. His site helps find things for children with autism and other disabilities that they are attached to and need replaced for any reason.

Marc happened to appear on ITV This Morning with Philip Scofield and Holly Willoughby on Wednesday 22nd of November where Isaac’s appeal was aired live. I broke down in tears when Philip and Holly surprised everyone by making their very own lift video for Isaac too.

So what can you do?

Well if you would like to join Philip, Holly, transport for London, charities, cruise companies, housing associations, lift manufacturers and hundreds and hundreds of everyday people around the world it is very simple.

The next time you are in a lift please take a photograph or a short video clip and load to this page. All the clips and photographs will be made into a dvd for Isaac and also loaded onto a special YouTube channel for others to enjoy too. What takes you just minutes will be life changing for Isaac and his family.

Be part of something special this Christmas. Help make Christmas special for Isaac.

Every picture and every video matters. We appreciate every single one of you.

Please spread the word.

Pictures and videos should be sent to HERE

With special thanks to Gemma Bryan and Kelly Kemp from It’s a Tink Thing for helping me admin this page.

Ten Seconds That Prove You Should Never Underestimate A Non-Verbal Autistic Child.

People don’t expect much of my son. 

Speech and language therapists have all but given up on him, encouraging me to just accept he is non-verbal with limited understanding.

School take him on ‘environmental excursions’ rather than reading and writing because…well he can’t hold a pencil despite having been in school for four and a half years so he is never going to read and write is he?

The learning difficulties mental health team wrote to us explaining his challenging behaviour and long spells of screaming are just part of his complex diagnosis and are unlikely to change.

The public looks down on him in distaste.

Children his own age mock him in parks and soft plays when they see he can’t talk and is still wearing nappies.

Even as his mum I sometimes find myself wondering what the future holds.

It is easy to understand why. My son has a long list of diagnosis all of which are life-long conditions. He development is years and years behind what is ought to be and he requires support for all his personal care. He is a non-verbal severely autistic 8 year old who is still very much living in his own world. 

Well that is what I thought too. That is until I happened to turn my iPad video recorder on this evening while he was playing with his iPad. What I captured changed everything.

He had been handing me his iPad on and off for the last half hour. He was pressing the ‘google’ app wanting me to type things in to let him scroll though images. It was exhausting trying to guess what he wanted to look at with no eye contact, no words to tell you and no clues. In the end, frustrated myself, I handed him the tablet back and said ‘Isaac google something?’ I never for a minute even thought he would understand let alone google something so incredible it had me in tears:

He clicked on the search button and within seconds he pressed the ‘i’, quickly followed by ‘s’, then without hesitation he pressed the ‘a’ right beside it twice, before pausing for a few seconds then finishing his search with a ‘c’. In total it took less than 10 seconds for him to prove you should never underestimate anyone!

He just typed out his own name and I had no idea he even knew it let alone how to spell it!

The speech therapists may be right about him not speaking but he clearly understands far more than they realised.

School thought he would never be able to read and write…well he may not be able to hold a pencil cold but he just wrote his name using a keyboard on an iPad so who know what else he may be able to type?

The learning difficulties health team may be right about his behaviour being part of his comprehensive and complex diagnosis but what if so much of it is frustration at understanding but unable to communicate back?

Maybe this ten second video may help the public see that you can not judge anyone by lack of speech or lack of eye contact or lack of social skills. 

It only took my son ten seconds but in that ten seconds he has proved to so many that we must never, ever underestimate anyone, especially those with non verbal severe autism.

Does my son still have difficulties? Absolutely. Should I ‘not expect too much of him’? Never!

Behind the flapping, you tube on repeat, screaming exterior is a brain hard at work piecing things together in his own way in his own time. 
People don’t expect much of my son: I do. He just showed me why.

​

​