It was a brisk Wednesday morning as I walked my daughter home from school. Her cheeks were flushed and her face smiling as she told me about her day. By the time we reached home less than ten minutes later I was crying.

Wednesday is PE day. The one day of the week my daughter dreads. Some people thrive at sports, my autistic daughter isn’t one of them.

As she held my hand she began to tell me about PE that day and I braced myself for tales of not being picked again or how she fell over or how she couldn’t roll or kick the ball, all stories she’s unfortunately told me time and time again. But today was different; today she was animated, emotional and excited.

‘PE was great today’, she started, which made me smile straight away. That was a rare statement in itself.

‘We were playing rounders (similar to baseball). We were put in teams but there was only one of my friends in my team. I know sone didn’t want me in their team. They never do mum. I can’t catch, or run or bat so I understand. Everything was ok to start with, well not really as I couldn’t catch or run or bat as you know. But then it was my turn to bat.’

She stopped as we waited to cross a road. I had no idea what she would tell me next.

The girl in the other team threw the ball. I missed it. She threw again. I missed it again. But then a friend in the other team started chanting my name. Others in her team joined in too. I tried so hard to hit that ball mum, but I couldn’t. I missed again. Three times I missed and I was ready to walk away when the girl behind me, a girl in the other team, stepped forwards and put her arms round mine.’

We paused to cross an opening to a garage. My 11-year-old continued.

‘She had her arms and hands over mine mum and they were still chanting my name. The girl threw the ball a fourth time and the girl behind me helped me hit the ball! Then I had to run mum. You have to run to the next area before the other team get the ball there. I can’t run. But I tried.’

By now my eyes were already watering as we reached our street.

‘The children on the other team were still chanting and cheering for me. I did my absolute best mum, but when I looked over I saw something amazing. See the girl with the ball mum, well she had caught it and she was coming towards me but she wasn’t running fast like she should have. She was running in slow motion to let me get to the hoop before she did.’

She paused as we reached the gate of our house.

‘The other team lost so I could win. I’ve never won in PE until today. It felt so good.’

So many told me that mainstream school might not be right for my daughter. They said she might be bullied or not be included and she’d struggle to make friends. In fact she couldn’t be more accepted or included. That day I knew that despite her sensory difficulties, her eating disorder, her severe anxiety, her selective mutism and her autism, that mainstream has been 100% right for her.

Not only that but it’s been right for every other child in her class too.

I don’t remember much of my school days, but I know my daughter won’t ever forget that PE lesson for as long as she lives.

‘She’s a loner’

‘Her play is solitary and repetitive, and she doesn’t interact with others.’

‘Socially isolated and withdrawn’

That’s just a few of the comments written by professions about my autistic daughter over the years.

There’s so much emphasis put on social development, peer interaction and developing friendships that my daughter is seen as different and wrong just because she enjoys her own company. Not only does she get judged, but I in turn get judged as a parent if I am seen to encourage her solitary play or allow her too much time alone.

When you are autistic, or you have an autistic child, playing alone is somehow seen as wrong. Would we say the same sort of comments to a child (or adult) who wasn’t diagnosed autistic? I sometimes wonder.

My daughter loves her own company but that doesn’t mean she’s a loner or has no friends.

The two are not exclusive. She happily spends time interacting and playing with her twin brother, she spends hours a week playing box and card games with immediate family and she has a few select friends at school too. But at weekends and evenings she is happiest reading alone, lining up her favourite toys or watching YouTube with her headphones on.

Being alone gives her time to process things.

It helps her restore order and calm in a world of chaos.

It gives her a sense of security and control.

It allows her privacy.

It brings her comfort.

It calms her senses which have been bombarded endlessly all day.

It slows things down for her.

It gives her freedom to be exactly who she is.

It frees her from demands.

It gives her space.

It encourages her creativity.

It brings her independence.

It fosters confidence.

It makes her happy.

Socialising and building relationships are important but pressurising a natural introvert to change personality is wrong, autistic or not. The world needs loud people, quiet people, those that work better as a team, those that can work efficiently independently, those who crave noise and those who prefer quiet, and those who have huge amounts of friends and those who just prefer their own company.

Giving autistic children and adults the tools to help them is supportive but when those same tools get used to pressure them to be someone they are not we create people who mask, become angry and bitter and we set them up to fail.

We shouldn’t fear those who like being on their own and we shouldn’t always be rushing to interact with them either. Playing alone doesn’t always mean you are lonely.

There is nothing wrong with enjoying your own company. For many autistics it’s the safest most accepting place to be.

As I order a new school bag online for my son I glance up as he flaps and laughs at the same 10 seconds of video he’s had on repeat all day. He has no idea about going back to school like he has no idea about so many things in life.

He had no idea why school suddenly stopped, no idea why his routine suddenly changed and no idea why he could no longer splash in the local swimming pool or crawl around in soft play at the weekends like he’s done for the last 11 years.

Like so many millions throughout the world with significant learning disabilities he has been totally oblivious to the pandemic that has swept the world and changed all our lives.

Right now people like my son might cause concern for so many. He can’t understand or observe social distancing, he can’t wear a face mask, those looking after him, including teachers and respite staff, have to have prolonged close contact in order to keep him safe and even washing hands isn’t something he understands or can do without great stress to himself and others. He can’t read so signage is useless, he can’t shop alone and he can’t say if he ever has any symptoms.

He’s not up to date with the news neither is he worried for the future.

He lives in the here and now, has no concept of money, and happily flaps at the same thing he watched weeks before and still has on repeat.

As I look at his smile and hear his laugh, I am so grateful for people like him: All those with such a simple level of living have so much to teach us and even more so now as we navigate through this year.

Those wonderful and very special people who remain obvious to the pandemic show us that each day has something to offer, even if it’s the most simplest of things like smiling gratefully at being given a snack or laughing as the first raindrops of the day lands on your nose and tickles you.

They teach us patience and understanding and tolerance of others. When the world says to stand back from everyone and avoid physical contact there’s something incredibly touching when someone like my son takes your hand because he knows no different or picks up keys a stranger drops and hands them to them without fear of catching anything because he has no understanding there’s anything he could catch. Or when he came to a shop with me and at the checkout went up a little too close to the server because he was signing ‘thank you’ because he can’t verbally say it. Yes he broke rules but he doesn’t know or understand and there’s no malice or agenda for those with his level of comprehension.

Looking after my son and keeping him safe this year hasn’t been easy.

Yet his innocence, his ability to love every single day and find fun in the simplistic of things, his lack of fear and total trust that his needs will be met, his natural enthusiasm and spark, his blissful obliviousness to the entire worldwide pandemic is so refreshing and healing.

So, to all those oblivious to world events this year, to all those with significant learning disabilities, complex needs and those unable to comprehend for any number of reasons: thank you. You continue to show me that the future is brighter than we think, tomorrow will give us reason to laugh and even if it feels like the same ten seconds are on repeat over and over we can still flap and laugh and find joy regardless.

The rain isn’t so bad when that first drop lands right on the end of your nose and it tickles. And even if it pours down just zip up your coat and have fun anyway.

There’s a lot to be said for all those obvious to the events of 2020 and the world is so much better having those children and adults like my son in it.

Anxiety: a feeling of unease, worry or nervousness.

We all know what it is, but would you recognise it in a child?

You can probably see it in my child in this photo: eyes looking to one side out of concern, the false half smile, the pale complexion, the rigid frozen stance. If you met her in person you might see the chewing of her tongue, the bowed head, the hiding, or the inability to speak to those she doesn’t know. But this isn’t always how anxiety looks.

Anxiety might look like the silent child, or it might be the screaming child.

Anxiety might look like the child who can’t speak, or the one who can’t stop speaking.

Anxiety might look like the child who avoids attention at all costs, or the child who needs to be the centre of attention at all times.

Anxiety might look like the child who appears to be the ‘teacher’s pet’, or the child who is more like the thorn in their side.

Anxiety might look like the child who conforms always, or the one determined to always stand out.

Anxiety might look like good behaviour, or challenging behaviour.

Anxiety is no respecter of age, colour, gender, geography or religion. It can be found alone or with a long list of other diagnosis. There can be an underlying cause or just a general character trait. It can be mild enough to never be diagnosed or severe enough to need hospitalisation. Medication can help but it can also make it worse.

Anxiety looks like a child at mainstream school or a child with very complex needs.

It can be neurological, psychological or triggered by trauma.

Anxiety can look like any child anywhere.

So, when you next see a child meltdown,

Hear a child scream,

See them physically panic,

Watch their body shake,

Wipe their silent tears,

Hold them as they kick, scream or punch,

Listen as they talk nonstop without a pause,

Feel helpless as they curl up and shut down,

Puzzle as sensory needs suddenly escalate,

Yawn as they can’t sleep,

Feel confused as they over or under eat,

Or struggle to answer an overwhelming amount of questions…

Stop and think that this isn’t a child being difficult, or challenging or disobedient, this is just what anxiety looks like in its many forms.

Be gentle, patient, supportive and reassuring. We all react to that feeling of nervousness, worry and unease differently and children often can’t control what anxiety looks like in their lives.

Be the calm, predictable, stable influence the child needs. You might never take it away but you’ll always leave a child feeling more understood and accepted regardless what anxiety looks like in this life.

To all those who, like my daughter, live with anxiety daily: May more people read this and see you are anxious and support you. You are not alone feeling that unease, worry and nervousness. I just wish it didn’t affect you as badly as it does.  I hope people realise that anxiety looks just like you.

 

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 and 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.

Have you ever wondered what your child is learning from you? I don’t mean concrete things like speech, numbers, spelling and such like.

I mean attitude.

I wondered so many times when my children were little what my son and daughter were picking up from me about how I viewed them and their disabilities. Was I inadvertently teaching them they were to be pitied, be looked down on, have no control over their lives and be seen as less because of the stream of therapist that came through the house and the volume of appointments I took them to? Was the fact I advocated so much to get their needs met making them feel a burden to me and to society? Was the fact they needed communication cards, wheelchairs and standing frames making them feel a target and too different to their peers?

I worried about these things because I didn’t want my children growing up feeling that their disabilities were something to be ashamed of. I wanted them to feel worthy, special and every bit as wonderful as anyone else.

My son has turned out exactly like that, but not because of anything I have taught him, more because his significant learning disabilities mean he confident being exactly who he is. He isn’t aware he’s different or disabled and just loves life in all its fullness.

But for my daughter, whose cognitive ability meant she could successfully attend the local mainstream school, finding that confidence in who you are when you have a string of diagnosis is such a difficult thing to achieve.

But at 11 she’s confident in who she is, aware of her own ‘medical issues’ as she calls them and sees the positive in it all.

She doesn’t see her autism as an issue, but rather something to be proud of. She credits her autism with the fact she’s the neatest writer in the class (‘because autism means I concentrate on things fully and put my all into it’ she says), she says it helps her obey the rules of class and understand maths easily. She isn’t upset at her own difficulties understanding social situations or struggles to make friends because ‘people should accept me for how I am just like I accept them for how they are.’

She doesn’t see her eating disorder and limited safe foods as a negative. In fact, she says that having the same packed lunch every day at school frees her from the worry of having to choose what to eat from a menu and means she can think of other things instead.

She doesn’t worry that others can do more physical things like jump, skip, catch balls and roll over when she can’t. ‘We are all good at different things and that’s ok’ is her reply to that.

She doesn’t let her communication difficulties hold her back either. As a selective mute she doesn’t speak in school at all yet when asked about this she smiles and says confidently to me, ‘At least I know when the teacher tells the class to be quiet, I know I wasn’t to blame for the noise!’ She also says she’s not too worried about not being able to talk in class because it means the teacher won’t ask her to say answers when she doesn’t know them!

So, I asked her if she feels different. She laughed and said: ‘Of course I do! Every single one of us is different anyway and that’s what makes us all special.’

I worried that society’s view of disability might have a negative impact on her. I feared having so much time out of school for mental health appointments, weigh ins, therapy and additional support might impact on her mental wellbeing and confidence.

It is possible for a child to grow up disabled with a positive attitude and self-image?

It is possible because my own daughter is proving that.

I made a conscious effort to not talk about her eating disorder, her neurological condition, her developmental delays and her physical struggles in such a way that she would view herself and her disabilities as something to be ashamed of or embarrassed about. She’ll get that enough from others sadly.

My job now is to help her keep this positive self-image as she negotiated teenage and adult life as a disabled young person who continues to see herself as someone of worth regardless how others see her.

She’s a girl who loves herself and her own uniqueness.

Everyday when I wonder what she’s learning from me I realise that it’s actually me learning from her.

So many children have been out of school this year for many months. As time goes on and family life changes unrecognisably from the start of the year so many parents are worried that their child or children are ‘falling behind’ in their education.

I get that. My son is due to start high school later this year and I absolutely feel the heartache that he had no end of term events to mark leaving such as a leavers assembly, parties, trips out and saying goodbye. He had no closure and didn’t get to meet the targets that were set for him just weeks before school suddenly closed.

His sister was the same too. An entire term lost, never to be repeated.

Home education hasn’t gone well despite my good intentions. My children are autistic and very ‘black and white’ thinkers so home is where they relax, unwind, play and watch YouTube. School is where formal learning takes place and the two rarely mix. With no peer motivation, no handing jotters to be marked, no face to face interaction with a teacher and no structure, even doing the set activities school sent has caused huge anxiety and tears.

I know so many families are also struggling too.

So, can I share with you a secret that has helped me so much? Your child isn’t losing out in education by being at home.

Does that help ease your guilt?

It should do.

Yes, your child may be missing out on formal curriculum but there is so much more to education than a nation programme of study.

There is so much you ARE educating your child on even if you don’t realise it.

Here’s just a few:

You are teaching your child resilience. While they may learn this consequentially in school what you are doing at home is showing them directly how to cope in a crisis by providing a safe, nurturing, loving environment to shelter and grow. When they face a crisis as an adult (which they inevitably will) they will look back on this season and have strategies to see them through tough times thanks to you.

You are teaching them that when the world is upside down, they can rely on the stability of family. That is something school can’t teach.

You are teaching them forgiveness, tolerance and patience by living as a family in close confinement for a period. This will help them through work situations they face throughout their life.

You are teaching them the importance of staying safe. The world is sadly a dangerous place at times and this period at home will help them see how vital being safe is.

You are modelling obedience and adaptability. In doing so you are teaching your child about following orders, the importance of submitting to authority and trusting others to know what’s best even when you are afraid and don’t understand.

You are teaching them love. Love within a family unit, love for your community and love for your country. By sacrificing for others, you are showing and teaching your child that life is about much more than their own wants and needs and that others matter greatly.

Mathematics can be caught up on, literacy can be taught by great teachers but what your child is learning through an unprecedented time at home in your care is something they will treasure for life.

Your child isn’t losing out on education being home, they are gaining skills for life from a teacher who is the most incredible person ever to them.

Dear carer,

I thought about you today when I sipped my morning cuppa. I wondered when you would get your first cuppa? Would it be after you had washed, dressed and fed someone else first? Would you perhaps even have had to medicate, reassure and calm an anxious heart and body before you got to sit down and eat and drink yourself?

I thought of you when the postman brought me mail. Have you had a bill today that made you worry, another appointment for the person you care for, a new report about their condition? Have you had to pick up someone else’s mail too because they can’t read, don’t understand or are too frail to bend down to reach it? Are you carrying the burden of someone else’s affairs as well as your own just to keep that person independent for a little bit longer?

As I watched the news, I thought of you again.

I know you exist, but the media never seems to talk about you. It’s like you are invisible to them, a sort of army of ants working tirelessly for little more than love but meeting needs of such high significance that specialists paid thousands struggle to grasp.

I made myself a sandwich for lunch and my thoughts turned to you again. Do you get a break or are you working all day and all night unable to ever leave the call of duty? Are you spending yet another meal time cooking, preparing and feeding someone else who may or may not ever be able to thank you? Only to then have to clear them up, clear away dirty plates and cutlery and provide very personal care to another.

When I heard from a friend I thought of you again.

When did you last get a night off? When do you see your friends, socialise and build up your personal support groups? Was it yet another day of isolation, being hidden from the world, caring alone? How much do your friends even know you do? Do you have anyone you can offload to, laugh with, confide in?

When I bought myself something online, I wondered about you once more. When do you get time for yourself? How do you juggle self-care when the needs of another are on your shoulders day in and day out?

I read a comment from a friend on social media who is a student but working too and how hard it was for her. I thought about those of you doing this for more than one person, parents of more than one disabled child, ‘sandwich carers’ caring for more than one generation, sons and daughters caring for parents who both need support. I thought about how hard and demanding that must be, how stressful and how exhausting too.

As I went to bed knowing I could switch off, relax and sleep as much as my body and mind needed, I thought of you again. How difficult and tiring it must be to care through the night as well as the day. How perhaps your mind, understandably, can’t switch off and the worries you carry for the future.

Maybe I thought about you because it’s Carers Week and finally it’s your week to be noticed and accounted for. Maybe I thought of you because I understand, I care and I see you.

I thought of you mostly because what you do matters greatly.

You are not insignificant or unimportant. Without people like you sacrificing daily for others there would be so many vulnerable needing care that society couldn’t cope. The taxpayer would be so burdened by the cost that you save by being you and doing what you do. Without you there would be thousands more in hospital, homes and hospices and they wouldn’t cope.

Dear carer, I thought of you today and I hope others did too. I know thoughts won’t give that physical support you need, or the financial help or even ease your burden in any way. But I hope it gives you some comfort to know that you are seen and cared for and valued greatly.

The world needs you. You are vital and important.

You are visible to me.

Thank you,

Don’t stop caring please. You are appreciated.

 

My son is 11. He’s average height, loves YouTube and particular about what he likes to wear. He eats me out of house and home and would rather walk away from me than with me when out in public. In so many ways he’s an average 11-year-old boy, yet in one way particular he’s very different:

My son can’t talk.

He’s never been able to, though over the years his communication skills have increased a lot, as has his understanding. People think those who can’t talk somehow can’t understand and while my son does have learning difficulties, he understands much more than people think.

He also has plenty to say!

Every day I talk to my son just as I would his sister. He has words and phrases he loves to hear (don’t we all?) and he loves to get me to say certain things every day because that makes him smile and become excited. So, I say them…as often as he wants.

He loves to tell me what day of the week it is. He uses a board with the months and the days on and every morning points to the right day. He then points to his fingers as he loves to know what he is doing that day. I could use visuals, and often do, but he loves to hear me talk and he looks at me and smiles and flaps as he hears that, as always, his day will end with a bath, some supper and a story.

He will bring me things: his coat, shoes, cup, his iPad with where he has gone on google street map or his swimming trunks.

He doesn’t need words to show me what he wants and needs.

We use a 100 square number board with little numbers that go on top and we play games of finding the numbers. He’s amazing at knowing what comes next and will often pick up a number and ask me to I tell him what number it is and he laughs and smiles as if saying your got it right mum!’. For years he carried around a magazine that had been posted out from a food delivery company and he would show me foods pointing at his mouth or my mouth or his sisters to say he wanted that person to eat the food he was pointing to. He loved us playing along and pretending to eat fish and chips, or sausages and he would flap excitedly if I actually made what he requested for his next meal.

He shows me photographs on his iPad and we talk together about memories. He signs ‘yes’ and ‘no’ to questions and points to different parts of the photo to hear me talk about it.

People think our conversations are one sided, but they are definitely not.

It’s true he can’t make up stories, tell me how he’s feeling or talk about his favourite book. I would still dearly love to hear his voice, to hear him say he loves me, to have him sing and tell jokes. But I also treasure the conversations we have daily because they are precious and intimate and beautiful.

Having a nonverbal child can be heart-breaking but it doesn’t mean you can’t have conversations together.

It just means those conversations involve so much more than words.