Thinking about starting a new school is an anxious time for any young person.

Add in the fact you are not moving on with your peers and because you find some things harder than others you are going to be educated in a different town, in a different building and with different experiences to all your friends and it’s easy to understand why my autistic daughter is anxious. 

Like all other children about to move on to secondary school she’s worried about new teachers, new subjects, greater expectations and all the transitions from one class to another.

She’s worried about school lunches, changes to routine, not knowing anyone else and how she will even get there and back. 

But her greatest fear of all is will they understand her? 

The usual safety guards of extended transition, lots of meetings and the handover of reports have been heavily interrupted by a pandemic and school closures.

Meeting staff and seeing the new building are mostly being done virtually which doesn’t help her get a feel for what the place will be like, grasp the atmosphere and acclimatise to the smells and noise that will face her every day.

Faces and voices are different onscreen to real life and virtual transition doesn’t allow for her to meet her classmates. 

Will staff understand that and make allowances?

Will they be able to read her facial expressions and respond accordingly when she is unable to speak due to being selective mute?

Will they understand how hard she finds it to raise a hand and communicate to strangers, converse with children she’s never met and understand unwritten rules?

Will they give her the tools needed to enable her to communicate using a white board and pen like her primary or communication cards or will they assume because she is verbal at home that speaking in school should be fine? 

Will they understand when she freezes in fear because she can’t cope with the demands placed upon her or she cries because she was asked to put something in her bag and it doesn’t fit?

Will they understand how painful being asked to put a tie on is or how hard wearing uncomfortable school shoes is? 

She longs to be accepted, included and understood.

It’s what everyone of us wants really but when you are able to communicate, understand social clues and respond as expected, when you can ask for help easily and when you are not overwhelmed by sensory stimuli all around you these things are so much easier. 

She knows she’s different to others her age. She knows she needs more help to navigate and understand the world. She knows she’s autistic and anxious. 

She knows some people don’t even try to understand her and that hurts. 

Will her high school be a place she fits and is welcome or will she once again feel misunderstood and on her own?

All I can do is do my best to prepare her and them and hope for the best. 

How do you define disabled?

Friends and contacts who know my family will know that both my twins are diagnosed autistic.

However, if you asked them which of my children is the most disabled pretty much every person would say my son.

After all he’s the one who attends an additional needs school and always has done since he was 4.

He’s the one who has no verbal communication.
He’s the one still in nappies at 12.
He’s the one who can’t read or write, needs 24 hour care, has challenging behaviour and learning difficulties.
He’s the one with complex medical issues.
He’s the ‘obviously disabled one.’

Yet both of my children are disabled; they just present differently.

Because my daughter attends mainstream school many don’t see her as disabled.

Because she can speak it’s assumed she has no communication difficulties.

Because you can’t see a nappy under her clothes it’s assumed she has no continence issues.

Because she can read fluently, write neatly in sentences, behaves and obeys and she has no learning difficulties she is clearly ‘not disabled.’

Because she hasn’t got complex medical needs she must be fine.

She looks ok so she must be ok.

That isn’t how disability works!

My daughter might be able to read and write and speak but she still has communication and processing difficulties.

She might attend mainstream school, but her social skills and emotional maturity are not that of her peers.

You don’t see her anxiety, her sleep issues, her complex eating issues, her lack of friends, her literal thinking, her sensory issues, her poor balance, her weakness and her absolute need for routine.

People are too quick to see the obvious and miss the hidden.

They assume if they can’t see something it mustn’t exist.

They think my daughter doesn’t deserve the disabled parking permit or allowances and I am accused of poor parenting, pandering to her and pretending she’s disabled, whereas the same people would never dream of suggesting any of this for her twin brother.

Yet, ironically, in many ways her disabilities are harder.

My son has no awareness of his own disabilities but my daughter does.

The expectations on my son are, sadly, very low.

The expectations on my daughter are often too high.

Getting support for my son hasn’t been too hard.

Getting support for my daughter has been a huge battle.

How do you define disabled?

Some very positive people prefer to answer that as ‘differently abled’.

In the case of my twins it is simply differently disabled.

Don’t judge disability or ability on only what you see.

Remember people can be disabled for all different reasons.

My twins exemplify that so well.

I have had years of working out how best to calm my child when things go wrong.

From walking the floor with him as a baby, to long car rides until he fell asleep to taking him places to meet his sensory needs like swimming and soft play.

Routine, space, familiarity, school, being calm and lessoning demands all became part of keeping him safe and keeping the rest of us safe.

But then 2020 changed everything.

All the strategies I had in place disappeared when lockdown happened and within days my son returned to being aggressive, confused, angry, and very challenging.

His world was turned upside down and he didn’t understand why. 

I had to adapt and quickly!

With heavy restrictions and rules in place for everyone and a ‘stay at home’ law in place life for us became very difficult.

When the school taxi didn’t come, when he asked for places using cards and I had to say no, when church closed and we stopped going out he became more and more angry. 

He was communicating confusion and upset and as an adult I needed to remain calm. 

So we started walking. 

First I took him to a familiar place we visited regularly.

Then sadly that too was closed.

I took him more local walks which at first made him even more anxious and aggressive.

He would refuse to move. He would scream. He would hit me.

I totally understood why…this wasn’t what he was used to and he had no idea where we were going. 

Finally the familiar place reopened. 

Mostly I take him there to walk to calm him, regulate him and meet some of his sensory needs. 

But sometimes we walk to calm me as much as him.

The last 12 months have affected me.

I am exhausted, sad and weary. My patience isn’t what it used to be and I can feel my own anger brewing some days too.

While I can verbalise my thoughts and have greater self control than my 12 year old non verbal autistic son I have discovered that in many ways we have similar needs.

We both need fresh air.

We both need a change of scenery.

We both need routine. 

And we both need our walks to calm us down and regulate our emotions. 

One day my son may be back at school.

Even when he does I might still be doing the same walk to clear my head because it’s going to take a lot of miles to get over all that has happened in the last 12 months. 

I’m sitting on the end of his bed while he plays on the floor wondering if it’s safe to leave.

It should be.

On the face of it he’s 12 years old and by now he should be developing independent, understand safety and personal responsibility and be easily able to call me if I am needed. 

But the problem is we haven’t reached any of those stages yet and we might never meet them 

Yes his body is 12, taller than me, stronger than me even at times, and with bigger feet.

Yet his cognitive ability, understanding, social awareness, and ability to process, is that of a child under 2.

His communication skills are even younger again and with no spoken words calling for me for help (not that he ever would realise I could help him) isn’t possible. 

Then there’s the risk of him having a seizure.

He might look well, not have a temperature, be smiling and appear happy; but epilepsy isn’t moved by any of those.

I could step out the room and he could suddenly shake, foam at the mouth and lose consciousness.

How would I know if I wasn’t in the room with him? 

Then there’s the risk he could swallow something. Or hurt himself. Or smash something.

He’s impulsive, seeks sensory feedback often and still mouths everything. 

There’s there’s his bodily needs: Not toilet trained and unable to clean himself it’s not unheard of for matters to be taken into his own hands…quite literally!

It’s far far better to prevent such a thing than to face the clean up afterwards, trust me. 

Then there’s the dangerous stuff; the climbing on windowsills, the throwing everything, the pulling furniture, the banging, bouncing, thumping and crashing that leads to broken pieces, hands in places they shouldn’t be and actions that could easily result in hospital visits.

Besides the risk of harm to him, the guilt of knowing it could be preventing just by being with him would be tremendous. 

So I sit watching my 12 year old trying not to get consumed with the hundreds of other things I could be doing instead.

They won’t get done if I don’t do them so it’ll be another very late night doing laundry, cleaning the kitchen and preparing meals. 

I’m grateful for the many staff who have over the years had to be with my son continuously, just like I am: The nursery staff, primary school staff and now high school staff.

But right now in lockdown they are not available so my days are consumed by always being with my son who can’t be left alone. 

When people tell me to ‘stay safe’ I often wonder if they realise the heavy burden this means for parents like me who can’t actually safely leave their child unattended at anytime. 

School closures are hard for everyone but especially so for those of us with children with physical and developmental needs who require adult supervision every moment of the day. 

This isn’t just lockdown for me. This is every evening, weekend, bank holiday and all summer holidays too. 

I may as well get comfortable. 

What is there to laugh about right now when so many are ill and dying? Shouldn’t we all be worried, focussed, mourning, serious and concerned? 

Maybe so but laughter should still be heard. 

In fact maybe we all need to hear it more than ever before! 

There’s something extremely powerful about laughter.

It releases endorphins that make us feel better, helps with stress and boosts our immunity.

It improves our breathing, helps mental health and even aids sleep.

It connects people, strengthens relationships and can even improve your appearance! 

My son can’t tell you a joke. He can’t tickle you or pull a funny face. 

But his laughter is still contagious. 

He probably has more reason than many not to laugh.

He has seizures, he’s unable to read or write, he has a progressive genetic condition.

He can’t speak. He gets highly distressed at routine changes. He has significant learning disabilities, a brain mass and mobility problems.

But in his 12 years of life there’s barely been a day when he hasn’t laughed and made others smile too.

He doesn’t understand pandemics or viruses. He has no concept of death or loss.

Restrictions on daily life are beyond his comprehension.

Things like social distancing, school closures, face coverings and hand sanitising are a complete mystery to him. 

But he laughs. 

He laughs at the sound of me dropping rubbish in the bin. 

He laughs at water filling the bath tub. 

He laughs if I accidentally drop a fork or knife on the floor. 

He laughs when he pulls wipes out of the box one by one and throws them around. 

He laughs at the sound of mail being delivered.

He laughs every single time the telephone rings.

And he laughs at the feel of snow on a winters day. 

Oh how that made him smile and laugh. 

It’s ok to laugh even when life is hard.

In fact maybe that’s exactly when we need to laugh the most. 

It’s kinda good that Coronavirus restrictions mean no-one can visit my home and I can’t visit others.

It means I have a bit longer to practice my fake smile. 

You know the one: when someone asks how you are and you smile and say ‘good thanks’ when inside you carry the weight of the world. 

You know the one: when someone messages to meet up for coffee and you sit there realising how different your life is to theirs and wondering if you have missed another medical appointment for your child while you sip your coffee. 

You know the one: when you sit in meetings of professionals and they all give reports about the child you gave birth to like they actually know them whilst you sat up watching them giggle when they should have been sleeping at 3am for the fourth night that week. 

The same smile the doctors see when they give you yet another diagnosis.

The same smile you give the headteacher when they ask for yet another meeting.

The same smile you wear when cleaning up bodily fluids from the carpet yet again knowing that it isn’t your child’s fault. 

It’s not that I’m not happy.

When my child laughs his loud contagious cackle my heart jumps for joy and my eyes light up.

When his school report says he’s lasted a full day in the classroom without any ‘incidents’ I am utterly delighted.

Every little thing he achieves, every step of progress, every inch of independence thrills me to the core. 

But I am tired; oh so tired.

My house is a mess. I eat too many take away meals because I can’t leave my child unattended to cook from scratch.

I have a to-do list that gets longer every day. I mix up the names of medical specialists, carry guilt when I forget a dose of medication and jump whenever the phone goes.

I delay forms and phone calls because I don’t want to talk about my child’s struggles anymore. 

But people see me smile. 

Now and again that smile is genuine but so often it’s fake.

Who has the time to hear how things really are?

Who can help when a pandemic has left so many caring alone?

Who can truly understand years of sleep deprivation and worry?

Who can help when your child can’t communicate and you can’t work out what they want you to know? 

Isolation, exhaustion and stress take their toll.

I am not the only parent carer right now wearing that fake smile, taking festive photos like everything is great and buying Christmas gifts for a child who has no idea Christmas even exists at 12. 

When you see someone smile don’t assume that all is wonderful. They might just have mastered that sane fake smile that I have too. 

It’s been over three months now and it’s just becoming more normal.

My son just won’t be in the downstairs of the house after school.

He is autistic and non verbal with other complex needs and he can’t tell me what is troubling him.

Of course at age 12 wanting to be in his own room would be considered ‘normal’ but it’s so very different when your child has complex needs. 

The problem is he can’t be left unattended. 

He could have a seizure, he can’t communicate if he needs anything, he is developmentally just a young toddler and he still puts everything in his mouth, causes damage and isn’t safe to be alone. 

But how do you balance the needs of one child who has extremely high support needs with the needs of your other children? 

When my son was finally asleep last night and the monitors were all on I sat with his sister and we talked about school, friends, her toys and games, and then we moved on to Christmas. 

I asked her what she would like for Christmas and she handed me a simple drawing. 

‘I miss you mum’ 

All she wanted as a sibling of a disabled child for Christmas was to have time with her mum.

The guilt can be hard to bear at times.

Like many I can find myself over compensating by getting her books or a new game or over planning the time we do get with activities like shopping, cooking or playing box games.

These are all good but sometimes all she wants is to be able to tell me about her day at school, or something she’s read or share her excitement that it started snowing.

Those are the things she misses as a sibling to a complex needs brother.

These are the things I miss as her mum too. 

Her simple drawing hit me hard but it also gave me the deepest respect for all the other siblings of complex needs children. 

Last night I made a promise to my daughter, not just for Christmas but for life.

When I look at things that will help my son, help my family and make things easier I promised her I wouldn’t just look at my sons needs but at hers too. 

Yes my son needs me but his sibling needs me just as much, not just at Christmas but in every other season too. 

She’s not asking for the latest toy, or the most expensive technology.

She’s not made a long list of wants or asked for something ridiculously expensive.

She’s asked for something every child should receive freely: love and time. 

The very thing we all need to give and receive in abundance, this year more than ever. 

My living room floor has them, shelves on my children’s rooms have them and even their beds are lined with them…set ups of toys that don’t appear to get touched. 

I vacuum around them, sweep beside them and dust them without moving them because while these toys might appear to be unloved and untouched they are actually extremely precious exactly where and how they are. 

My children are autistic and they play quite differently to others.

My son loves toy plastic food, cuddly toys from his favourite show and putting things in and out of bags.

His sister loves Playmobil, things you can collect, and little figures.

Every night before bed my son lines up a row of plastic food on his bed before going to sleep and my daughter spends hours looking at her Playmobil set ups without ever touching them. 

My son has no spoken language and significant learning difficulties so he can’t explain why he does this but his twin sister can.

I asked her recently about her toys. 

“Mum who do toys have to be touched to play with them? I like to imagine in my mind what is going on in the toy house or with my figures because if I move them I worry they won’t ever look exactly the same again. I worry I might lose a piece or get it mixed up with something else and they are too precious for that to happen. I like looking at them and knowing they are exactly as I left them.” 

She really got me thinking.

How many adults like to display trophies, awards or even photographs? We gain so much from looking at these things, remembering past times and people and achievements.

We visit art galleries, museums and admire displays in shop windows.

We don’t feel the need to touch, move or ‘play’ with these items and yet this is accepted and encouraged. 

But whenever a child is given a toy we somehow expect them to touch, manipulate or move it in order to accept that they like it and are playing with it. 

For some children, and adults, the appreciation of an item is not in its manipulation but in its beauty and perfection and simply in its ownership. 

So if your child, autistic or not, builds a Lego model once then sits it on a shelf, or set up a dolls house only to just look at it, or lines up cars or toy food in lines then walks away, don’t be too quick to think they don’t like the item, or they are not playing.

Sometimes the toys that don’t seem to be touched are actually the ones loved and appreciated the most. So much so that they want them to be perfect forever. 

It might not be how many others play but if it brings my children comfort, happiness and joy then it brings all them to me as a parent too. 

Sadly I am used to it.

But I shouldn’t need to be.

People see me hook arms with a boy who is just a centimetre smaller than me and look with wide eyes.

He doesn’t look any different to any other almost 12 year old so why do I treat him like a toddler? Maybe I am one of those overprotective mums?

They watch as he climbs up stairs less than half his height and I see the judgement that he’s on a slide meant for pre school children. Some even say something, rarely directly to me and mostly to people nearby.

‘Kids that age should be on the bigger stuff. Shocking!’

‘There’s an age restriction for a reason. Not that some people read it!’

I just smile.

Had I brought my son into the same place in a wheelchair they wouldn’t be saying this.

If he was visibly disabled, missing a limb, using a walker or even on crutches these same people would likely be sympathetic, inclusive and understanding.

How do I know this? Well last year my son was in a wheelchair, had all his hair shaved off and had a very noticeable large scar across his head. When he was doing then exactly what he does now other parents smiled at us, spoke to us and even asked if he was ok.

When his brain tumour was seen people understood he was disabled but now they can’t see his disabilities it’s like they no longer exist.

Does gravity still exist even if you can’t see it?

Do you still believe in oxygen even though you can’t see it around you?

Just because some disabilities are invisible doesn’t mean they don’t exist.

You shouldn’t need to be able to see that my son is non verbal.

You shouldn’t need to see that he has severe learning disabilities.

You shouldn’t need to know he’s epileptic.

I shouldn’t need to explain that he’s autistic.

I often wonder if his conditions were visible would I still get the eye rolls, the tuts and the comments? Would I still have to justify why I use a disabled bathroom with him? Would you still question why he’s on the smaller slide for his own safety?

I get strange looks when I am out with my son. Sadly I am used to it because he’s one of the one in ten people who live with invisible disabilities every single day.

I shouldn’t need to get used to those looks and comments, neither should my son. But until society realises there can be so much more than what you see nothing will change.

Until people realise you don’t need to see something to believe it exists those comments sadly won’t be the last we will hear.

And we won’t be alone in hearing them either.