When school isn’t right for your child

From the day she started she said she hated it. I thought it was first day nerves. It was the big change. She’d get used to it soon and settle. 

A few months went by and she started to change. Mood swings, behaviour changes, tearfulness. I put it down to tiredness, hormones, missing her old friends. 

Then it started: Complaining of a sore tummy, headaches, refusing to get dressed, feeling sick. I spurred her on thinking I was doing the right thing. 

She’d come home telling me things that didn’t seem right.

I’d email and they’d promise to sort it. Then something else would happen and I’d email again. And again. And again. Emails became meetings. Still she was so unhappy. By now she was refusing to even go, making herself ill, crying all weekend. 

Maybe it wasn’t the right school for her?

The problem with having a child with additional needs though is that it’s not as simple as just choosing another school. I hadn’t even chosen her school to begin with! So much was out of my control and all other placements for those with additional needs were already taken with a long waiting list too. 

We tried to make it work, probably far longer than I should have, but in the end it was obvious that school wasn’t the right place for my autistic child. 

It only took a matter of weeks to get formal permission to remove her. Her placement was in demand and for another child it may well be exactly the right place for them. For my child though her mental health had to come first. 

School trauma is very real and much more common than many realise, especially for autistic young people like my daughter. Her story is far from unique because the school system is often so inflexible and limited.

Children are lumped together often based solely on diagnosis or location and places often decided by people who have never even met the child. For some children this works out well but for many others it continues to be a struggle and their mental health suffers as a result. 

School isn’t always the right setting for a child to learn.

We need better options to accommodate wide needs and to suit each individual child. It’s not about ‘pandering to a spoiled child’ as some seem to think, but responding to your child’s communication and truly listening to their needs. 

There was a time when school was very much the right setting for my child but things change and the transition to secondary was more than she could cope with. 

It’s not been easy to go against the grain and realise that school isn’t the right place for my child but it’s definitely been the best decision I have made. My child is very much still learning…it just happens in a different place now because that is what she needs. 

The one and only school photo she had from her time there should have told me that months ago. If only I had listened earlier. 

Autism in the teenage years

Lots of people told me it would get easier as my children got older. They wouldn’t be so needy or demanding and they would become increasingly independent. 

I am not sure if they grasped the ‘lifelong disability’ part of autism but having two autistic teenagers definitely hasn’t got any easier. In fact, I am probably caring for them more now than when they were younger! 

Raising autistic teenagers is completely different to raising neurotypical ones.

Independence isn’t guaranteed in any way and navigating hormones they don’t understand and communication difficulties with even more peers and professionals involved adds stress that is completely different to that of raising younger children. 

High school is such a different experience with my children being one of hundreds each teacher sees daily. Each day my children have to cope with so many transitions, demands, expectations, social pressure and time pressures with far less support to help them through. 

Then there’s the pressure to conform, to fit in, to grow up.

They may, like my daughter, mask all day then break down or meltdown at home as the pressure gets released. They may feel they have to hide what they genuinely enjoy for fear of being mocked by others.

The social skills that others take for granted might be extremely confusing and misleading making things awkward or upsetting on a daily basis. The realisation they are different and the struggle to accept that is so difficult to manage especially during the years of puberty and high hormones. 

Then there’s their changing bodies, the growth spurts and all that comes with puberty: hair, breasts, moustaches and periods. Explaining all this to children who hate change is a huge challenge and not for the faint hearted! Preparing them when you can’t say exactly when something will happen sends anxiety sky rocketing and causes so much frustration. 

It’s the years when social interaction becomes much more nuanced and complex too causing huge anxiety to my autistic teens who still think in black and white and take everything literally. ‘Are they laughing with me or at me?’ becomes a daily worry. ‘Are they really my friend or are they just using me?’ becomes a nightly question I struggle to help them answer. 

As my children have aged, the difference between them and their peers has widened greatly.

The autism is more exposed, open, and visible and they are more vulnerable than ever. The balance between trying to protect them whilst letting them experience the world to learn and grow gets trickier and harder by the day. 

I want them to be proud to be autistic, to embrace exactly who they are without fear but am I setting them up to be bullied and excluded by society or should I watch them struggle to mask and blend in so that they make it through high school without being a target? 

That was my struggle until my daughter had a complete breakdown and is now home schooled and my non speaking son was placed in the most complex class in his special school. 

Now they are free to be exactly who they are but they both still need me now more than ever. 

To all those parents raising autistic teens: I get it. You are not alone. Take each day at a time and remember this too shall pass! 

Photos from school

Every day as soon as the taxi drops him home, I eagerly unzip his bag to read his diary. I wish I could ask him about his day but that isn’t possible. Well, it is possible, but he can’t answer. At 14 he still can’t speak and that home school diary is my only lifeline of knowledge of what his day has been like. 

That diary is everything. 

It lets me know if he’s drank anything all day and what he’s eaten.

It informs me of any care needs he had and how these were met.

It helps me know if he’s had any seizures and if so when and for how long.

It notifies me on what events are happening as he can’t tell me.

It fills in the pieces of his day and gives me a connection to the staff working with him. 

It gives me knowledge of how he’s progressing and how his mood has been. 

Every word in that diary matters but there’s something that matters even more:

Photos from school.

A click on an iPad or a button pressed on a camera and a small paper printout sent home means the world to me. It gives me more insight into my son’s world than anything the staff could write. It lets me see that my son is genuinely happy and relaxed.

It gives me something to show my son to talk to him about his day. It highlights my son’s achievements and makes me feel he’s cared for. 

More than all of that though those little photos give me so much peace of mind that my vulnerable son is ok when he’s out of my care all day at school. 

It’s hard to trust people when you have a child who can’t communicate and who has very high needs. Now he’s at high school, knowing all the different staff is much more difficult and complicated too.

He can’t even tell me if he has friends or share stories of his classmates. There were times during Covid when I didn’t even know how many were in his class or any of their names. 

Now I treasure every single photo from school so much.

I check the schools Twitter account to see if there’s any new ones of my child at least twice a day and treat that home school diary like my life depends on it. 

It might just take one moment of an adult’s time to snap a quick photo but for me that photo means everything. 

He can’t tell me anything about his day but a photo can. 

A small piece of paper but priceless to parents like me. 

The worry of a limited diet

I have a few big fears as a special needs parent: 

What will happen if I die? What will my child do when she finishes her education?

What if my child gets ill and I don’t realise because of her communication difficulties?

How do I make sure my child keeps safe when they are so vulnerable?

And what on earth will I do if the frozen food shop near me stops selling their nuggets?

That last one is seriously one of my biggest worries. Why?

Well because that one brand of nuggets is the ONLY thing my daughter will eat for breakfast and lunch every single day.

Even then, unfortunately, she doesn’t even eat the full nugget just the batter coating.

Honestly, that’s all she eats!

Dinner is the only meal she has anything different and then it’s just one brand of pie of which she only eats the soft pastry and nothing more.

On a good day, we might get a spoonful of baked beans but never any other vegetables or fruit or bread or meat of any description.

It’s not for want of trying I can assure you.

Her twin brother eats almost anything from pork stir fry to chicken curry to broccoli, kiwi fruit and anything else put in front of him.

My cupboards and fridge and freezer are full of a full array of delicious healthy foods that she’ll happily put in the supermarket trolley or even cook…but never ever eat. 

Of course, I worry about her diet so much. I worry about how it will affect her growth, her brain development and her bodily functions.

I worry how it will limit her life experiences and isolate her.

Most of all I worry that it will affect her health and her immune system. 

Over the last thirteen years I have tried everything from bribery, reward charts and involving her in the preparation and cooking.

None of it made a difference in any way. 

Eating simply causes her severe anxiety.

She craves consistency, predictability and understanding.

What many just dismiss as ‘fussy eating’ is anything but.

In fact, her limited diet is due to severe sensory issues, heightened anxiety and the rigid thinking that so often accompanies autism.

Pressurising her to eat something else, or even worse making a different brand and ‘pretending’ it’s her safe one, only makes everything worse. 

Incredibly her recent blood tests came back normal and she’s growing, developing and remaining as healthy as her peers.

Her bodily functions work perfectly and accidentally she’s doing well. 

So despite my worries I readily and willing cook those nuggets yet again praying that the company never decide to change the recipe, or even worse, discontinue making them.  

I allow her to eat where she’s comfortable and we never force her to eat at the table surrounded by smells, colours and noise that overloads her senses.

I listen to her, respect her choices and let her know that if she ever wants to try anything else then she’s free to do so.

Maybe one day she will.

Until then I pray that battered nuggets will always be available when we need them.

The girl in his taxi

School transport has been a major source of stress for me over the years.

In the 11 years, my non-speaking autistic son has had to get transport to nursery or school the provider has changed every single year.

So every single year he’s had to get used to a new car, new driver, new escort, new route and different children with him as well as different pick-up times and drops offs. 

For a child who seriously struggles with change, this causes so much distress every single year. 

This year when we finally met the new driver and vehicle my heart sank once again.

The vehicle this year was a large car where some of the seats were rear facing!

My son would be picked up last and would be allocated whatever seat was available even if this didn’t face forwards. 

I gently explained that he has a huge mass in his brain and travelling rear-facing would make him sick.

I discussed his impaired vision and why he needs to sit at one side as his other eye has no vision at all.

I told them he is epileptic and can’t communicate verbally that he was struggling and he wouldn’t be seen in the mirror if facing backward.

While the driver nodded to all this I really wasn’t sure how things would go. 

But what I had no idea about was there would be a girl in his taxi who would change everything! 

As the taxi pulled up outside my house for his first day back and the doors were slid open the first thing my son heard was an excited older girl’s voice:

“Oh it’s Isaac! Driver you have to be careful with Isaac. Let me help him!” 

And before anyone could do anything else she got out of her seat and supported my son into the vehicle, strapped him in, welcomed him and even gave up her own seat and sat facing backward herself! 

It’s a lovely story of kindness and humanity but what is even more significant is that the girl in the taxi has learning difficulties and complex needs herself! 

There are so many assumptions made about people with learning difficulties. They are too often overlooked and undervalued by society. 

Next time you perhaps meet someone who is struggling with something, requires extra support or you know has learning difficulties just remember the girl in my son’s taxi.

The care, compassion and kindness she radiated should never ever be forgotten. 

Today my autistic non-speaking son with very high needs laughed in excitement while he waited for his school transport.

My worries as his mum will always be there but knowing he has someone in his taxi looking out for him makes my heart sing. 

To the girl in his taxi: thank you for teaching so many of us to see beyond someone’s struggles and instead see their capabilities and ability to touch other lives.

Saving coppers, but at what cost?

As back to school time approaches and I find myself buying uniform and schoolbags a letter arrives about this years travel arrangements for my disabled son.

Once again it’s yet another company, a different driver and a different route. Why?

Because someone else put a bid in for the route that was pennies cheaper than last years company so they get the contract now instead.

For the sake of those saved pennies to the local authority, I will now, once again, have months of my child self harming, screaming, confused, anxious and agitated as he struggles to adapt to the change and I struggle to help him and trust strangers to once again transport my vulnerable son who can’t even speak.

We go through this every single year not because the previous people didn’t want to do the job another year but all because of a policy that means the cheapest option must always be used whatever the impact to the user. 

There’s no compassion for the stress or upset it causes or the understanding or awareness of the level of anxiety it unnecessarily puts my child (and us) through.

It’s cheaper, and apparently, that’s all that matters. 

It’s not just school transport that has this attitude either.

It’s the same with the medical supplies that he needs for his safety and dignity.

For years we had a great product that fitted well, was comfortable and provided the support required.

Then my son outgrew the product and we had to go through the process of getting the next size.

Unfortunately now the next size of the same product isn’t anything like as good a fit, nor is it comfortable for my child, and it doesn’t provide him with the same dignity or support he desperately needs.

I requested another product instead but I was informed those can’t be supplied as they cost a few pence more! 

Now as a result of having poorly fitting products I am having to wash his clothes far more often, provide numerous changes to school daily and even having to dispose of clothes most weeks as the product has leaked or not remained in place and therefore the clothing has become ruined.

What saves the health authority pennies is costing me many pounds every week and causing my son distress and discomfort that could so easily be solved by being willing to spend just a tiny fraction more for the right product for him. 

I know my child is vastly expensive and as a disabled young person he will forever require 24/7 care. I absolutely appreciate and am grateful for any support or help we receive.

This isn’t being ungrateful it’s about a system that sees only cost savings above everything else and refuses to look beyond the fact that the cheapest option isn’t always the right one. 

I get that budgets are limited. I understand prudence and accountability. My question is though: is the cost and impact of saving coppers really worth it in the long run? 

What about the radical idea that the needs of a disabled person were forefront in any decisions? What about if we actually valued people like my son enough to realise that by saving just a few pence you are in fact costing somewhere else much more and impacting on so many other areas like his education and family life needlessly?

What about someone somewhere actually stopping and thinking ‘is this really worth us saving just a few pence?’ 
Surely my son is worth that?

Do we really think so little of disabled children and young people to say only the cheapest option will ever do for them? 

The saddest thing of all is that so many families like mine face this day in and day out.

So many disabled children, young people, and adults have been told that they can’t have what they need just because it’s not the cheapest option.

Their dignity, pain, stress and anxiety doesn’t seem to matter at all. 

All that ever seems to matter is saving a few coppers every single time whatever the cost leaving families left to pick up the pieces of a system that values a few pennies saved over anything else. 

Don’t limit them more…

My 13 year old son is disabled. There are so many things he can’t do: 

He can’t speak.

He can’t read. 

He can’t write.

He can’t play video games.

He can’t even wash or dress himself.

And he still can’t jump. 

Having all these difficulties limits him in where he can go and what he can do.

He can’t go out and play with friends or kick a ball in the garden. He can’t join a sports team or ride a bike. He requires adult supervision at all times. 

Taking all that (and so much more that I could list too) into account his life experiences could so easily be very limited.

People would understand if I never took him to the library or the swimming pool or the park.

Most people would appreciate if I was anxious taking him to the beach or even on a walk. I used to be exactly that: anxious to take him anywhere. 

Then one day I realised something significant:

My anxiety was limiting him even more than his disability! 

So I took him swimming even if all he did was sit with his feet dangling in the water.

I took him to the park even if all he did was sit on the younger children’s equipment watching other children play while he flapped and laughed.

I took him to soft play even though I had to carry him around or go in with him to support him. I took him to the library to look and feel books even though he couldn’t read any of them. 

Then this last week I took him for his first ever visit to a trampoline park even though he can’t even jump! 

I didn’t ask for or expect any discount. I wanted him to be as included as everyone else and get the same treatment even if I had to sit on the floor to put his socks on and guide him carefully by the arm to the trampoline area.

In fact, the only time I even mentioned his challenges was asking if we could skip the safety video as he wouldn’t understand or sit through it and asking if I could remain with him throughout. 

Standing on the trampolines wasn’t possible for my son. He couldn’t balance and he was scared.

So he sat down while I sat close to him as he felt and watched the others around him.

He couldn’t run around like them or jump but he sat there as his body bounced as his smile grew and his laughter got louder.

He had an absolutely brilliant time enjoying the activity in his own unique way. 

His presence wasn’t stopping anyone else from playing or causing a disruption.

In fact, lots of the other children were curious and thrilled when I said they could jump close by so he could feel their movements. He added to their pleasure just by being there and made others realise that there are more ways to have fun than the traditional way everyone else participated in.

When he’d had enough I helped him back up and we headed home again just like everyone else. 

Back home that night he looked through his communication cards and smiled as he showed me one of a trampoline smiling.

In his own way, he told me that he’d had a great time and wanted to go back. 

We’ve already been back again and I suspect we might even be one regulars there. Will my child ever be able to actually jump? I doubt it but that doesn’t matter. 

What matters is that I don’t limit my child even more than he already is. We might have to adapt and do things differently but that’s ok.

It’s ok to be anxious if your child has extra needs but just don’t limit them more than their disability already does.

Don’t let your anxiety hold them back from having fun, however that looks to them. 

Care needs of a toddler but the body of a man

Few people talk about disability in teenagers.

The parenting books don’t tell you how to cope with a non verbal high needs child who is taller and stronger than you are.

How do I keep him, and others, safe as his physical capacity grows but his understanding doesn’t? What will happen to him when schooling ends? How do I care for him for the rest of my life?

These are just some of the questions I find spinning in my mind as I lie in bed at night trying to sleep.

He’s only 13 yet the damage he can do in a meltdown is so much more than when he was a child, the places I can take him too get smaller by the day and the products he requires to meet his needs get ever more expensive. 

Yet the expectations of society are now greater than ever. Gone are the looks of sympathy or compassion and in their place increasing judgment and condemnation. 

“Haven’t you got him to stop doing that by now?” 

“He’s far too old to be doing that.” 

“Surely he should be using the gents toilets at his age?” 

Then you have the added needs of puberty. Hair washing is traumatic for everyone so just the thought of shaving him terrifies me.

Consent becomes a huge issue too.

If he doesn’t consent to taking vital medication or a bathroom visit or washing does he have to right to really say no if he can’t understand the implications?

But how do you make someone who is taller and stronger than you do anything they don’t want to?

Gone are the days of physically lifting him from the middle of the road when he chose to just sit down or bribing him with ‘first and then.’ Do I allow a beard and moustache to grow even though he lacks the ability to keep them neat and clean? 

Then you have by far the biggest issue ever: what about the future?

For children like my son with the most complex needs who have always attended specialist schools there isn’t really much option for adult years.

College or university aren’t suitable and it becomes all about moving to adult social care where the person is looked after by carers either in the community or in day care.

It’s simply about entertaining him then getting him home again. It’s about cost, budgets and legal battles for power of attorney. It’s about applying for benefits in his name that he has no idea even exist. 

As others his age now make subject choices at school with future careers in mind my son is still happy watching Peppa Pig on YouTube.

While other teenagers become increasingly independent and go places with their peers he is at home as always with no friends and no speech. 

The older he gets the harder it is to see the differences every day. So few talk about disability after a certain age as if by the time children finish primary school their needs disappear. It’s somehow taboo to speak about a teenager with the mind and ability of a toddler. 

I will always be his mum but unfortunately I will also need to be his carer too.

He is a disabled teenager who one day soon will be a disabled adult. We must never forget that disabled children grow up, at least in body if not in mind. 

If only more people out there were willing to talk about those disabled teenagers like mine who still have the care needs of a young toddler. Maybe then I wouldn’t feel so alone right now. 

I never knew how unfair the world was until I had a disabled child

I am not that naive. I have always understood privilege and that not everyone has equal chances in life. But with words such as inclusion, discrimination, and tolerance now in daily use I had thought the world was changing in a positive direction. That was until I had a disabled child. 

The world isn’t fair, and many are still facing inequality almost everywhere they go. The harsh reality is that often those most excluded and discriminated against have little means of effecting change. So, on behalf of my own son, and the millions of other disabled children; young people, and adults I hope this makes those who can affect change to think more and do more. 

Outdoor amenities

One of the first ever things I noticed when my son was small was that outside play opportunities were unfair. Climbing frames, he couldn’t do; swings he didn’t have the body control to safely sit on and even slides too narrow for me to sit him on my knee. At just 9 my own daughter was so disgusted by this fact she wrote to the ‘park builders’ asking why they had forgotten her brother. It begs the question that in 2022, why are we still forgetting about the disabled when investing in play equipment in public that should be accessible for all? It’s not fair.

Lack of accessibility

Then there’s the lack of accessibility. Why are there still buildings in the 21st century without ramp access? Surely ramps benefit everyone and allow equal opportunities for all? Yet stairs are still the norm and lifts still an afterthought. Even in buildings where these are thankfully standard there’s often narrow aisles or blockages preventing people and making steering a wheelchair tricky. It’s not even just those using wheelchairs who have these difficulties too as prams, buggies, even mobility scooters all require ramps, wider access, and adequate working lifts too. Fair access needs to be so much better. 


Now let’s move on to education. The lack of choice in special education and the hoops that are required to jump through to get a place make education for a child like mine very unfair. Often choices aren’t just limited they are non-existent! Opportunities are often limited and travel a necessity. When inclusion in mainstream is an option, the huge lack of funding often makes it impossible and impractical. With schools still viewing children with additional needs as a burden on scarce resources instead of valuable contributors to the school community. They don’t have a fair chance. 

Toilet facilities

Now onto a taboo that few feel able to talk about: personal care needs and toileting. I took my son to a shopping mall recently. While there he required access to the bathrooms. When I found them, I was horrified to find the ladies and gents unlocked with free access, but all the wider disabled cubicles locked! I own a key that should be standard for all such places. But like so many buildings this mall has used different locks meaning I had to find a member of staff on a busy day then walk back to the bathrooms just to access a basic amenity. Something that everyone else takes for granted. How is that fair? Even when we did get access the room was barely suitable for my son’s needs and had clearly been constructed for elderly or less able bodied than physically disabled. I managed because that is what I’ve been used to doing for 13 years now. But it’s not good enough. I shouldn’t have to face this still. It’s not fair to me or my son. 

Life isn’t fair for my son; not fair he can’t speak or read or write. Not fair he has a progressive genetic condition; it’s not fair he’s had to have 16 general anaesthetics in the last few years alone.  Not fair he has so many medical appointments and requires 24-hour care 7 days a week. But his life could be fairer if those with the ability and understanding took more time to do things to make aspects of his life easier and fairer.  Like having toilets that meet the needs of real disabled people, better access to places and an attitude that says people like my son matter. 

Because disabled people do matter, and they deserve to be treated fairly.