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.
I stood in the playground of my daughter’s school in mid March as parents and grandparents gathered. There was only one thing being talked about: Coronavirus and panic buying! While many were stressing about shortages of toilet rolls and hand soap I was getting more and more stressed about the availability of baby wipes with two disabled children who both needed them. Since I wasn’t about to disclose to otherwise strangers about my children’s intimate care needs I kept quiet and walked my daughter home wondering how I would meet her and her brothers needs silently.
No-one could have predicted that by the end of that week my daughter’s school would close, along with every other school in the country, for an indefinite period due to a worldwide pandemic.
Coronavirus was no longer about which shops had toilet rolls but now about life and death and living in lockdown.
It’s 11 weeks now since lockdown started. I haven’t blogged at all during this period because it’s been a rollercoaster of emotions and every last minute of my energy has been spent supporting my autistic husband, caring for my elderly mum and looking after my autistic twins. I have cried alone, cried with my children, had sleepless nights and even had a panic attack for the first time since I was a teenager (longer ago than I want to admit).
But in the midst of this period there has been hope and that hope has kept me going.
Right in the midst of crisis there has been so much kindness.
Two days after lockdown was announced, on the morning I opened the last packet of baby wipes to clean a child up, I had a knock at my door. The postman, who was working throughout as a key worker, delivered a parcel from someone who only knows me via social media.
My daughter opened the parcel and shouted:
“Mum, it’s gold dust! Look what someone sent us!”
That’s the sort of thing she’ll always remember and tell her children about: in the midst of a crisis someone cared enough to show kindness.
Since that day I have been searching deliberately for acts of kindness.
I need hope. We all need hope.
We need to know the world isn’t all darkness and depression and that even when things are incredibly difficult that love never stops.
Here’s some of what I found:
I read stories of children’s birthdays and neighbours decorating gardens when the child was asleep to surprise them.
I read about surprises left on people’s doors…everything ranging from toys to colouring books to wine and chocolate.
Another person told me how a friend from her writing class, who had never met her young daughter, posted a box of books to her so her daughter had something to read.
One that really made me cry was the story of one lady whose daughter is autistic and has a very limited diet. One of the few things the girl eats is McDonald’s fries. For almost 9 weeks every McDonald’s was closed, even the drive through’s, and when they announced reopening it was staged with some places opening before others. One lady queued over an hour to buy fries then drove to the girl’s house to deliver them so that the girl could have her beloved and treasured safe food. That’s incredible sacrifice.
I heard stories of churches making packs for children and families while church was closed.
I read of charities making activity bags and sending them to children all over the country.
I was told of teaching assistants dressing up as children’s favourite characters on video calls to cheer children up.
We had deliveries ourselves including colouring sheets from a local taxi company, Easter eggs from a community group on Easter Sunday and a box left on our doorstep with individually wrapped small gifts for each of us…a magazine for my daughter, my son’s favourite biscuits, a treat for my husband and a bag of sweets for me. Little things that meant the world to us all.
I cried when another friend shared how her sister in America used the time difference to book a supermarket delivery slot in England for her sister and her nephews and even managed to get ten bags of a certain pasta which she knew was a staple food for the family and which they had been struggling to get.
There were so many stories of people making hot food for vulnerable neighbours, shopping for elderly family and friends, supermarkets keeping certain tins of things aside for a local family whose autistic son relied on a certain tin of meat, and then bigger more organised events like people putting rainbow pictures in their windows so children had something to see on their daily walk…the one allowed exercise each day.
Then last week a friend’s son, a wonderful young man who happens to be non verbal, autistic with learning difficulties and epileptic, was celebrating his 18th birthday with no ability to have a party, see family or see his friends at school. So to help him celebrate strangers from around the country sent him cards to open and little gifts that made his day a day to remember even in lockdown.
Kindness and love can’t undo thousands of deaths nor can it eradicate completely the stress and distress of a world wide pandemic, but it can go some way to remind us that even in the midst of a crisis, when people have every reason to look out for just themselves, that there is hope and love in the world and that people still care about others.
It’s acts of kindness that many children will remember in years to come when they tell others about the time they lived in lockdown. It’s acts of kindness that have helped keep mental health strong in the midst of heartbreak. It’s acts of kindness that have kept me going when lack of sleep, long days and tight restrictions have felt like I was trapped.
Baby wipes, soap and toilet paper are no longer in short supply these days. Kindness isn’t either.
Even when life is at its hardest look for kindness. I know you will always find it.
With thanks to everyone who shared their stories to bring us all hope.
As I fill in forms and prepare for my son’s first transition hour at his new high school I find myself being thankful that he has very complex and profound needs. Why? Well because this meant he easily secured a place in a local ‘Additional Support Needs’ high school (known to most as a special needs secondary school).
Next year will be different. His sister has no learning disability or difficulties, but she is autistic and won’t cope in mainstream high school. Having looked at different options it lead me to draw this simple drawing:
Where do children like my daughter go?
Far too often there just isn’t a school that’s right for your child.
This is the story of a child called Miss S written by her mother. This is the story of a child, who due to her autism, no longer fitted into the mould of mainstream school and despite having no learning difficulties she did manage to secure a place (eventually) in a special needs school but this didn’t work either.
Many will say ‘just home school’ but for many children this isn’t the best option. They want to go to school but there just isn’t a school that’s right for them. ———-
“Well, you’ve missed out on a pretty and symbolic sunset” Miss S texted me earlier.
I was out, picking up some fries. For her, to cheer her up. Yes, I’m aware this could be classed as comfort eating, we’ve discussed it… that’s not what this post is about today.
I asked Miss S why the sunset was symbolic. Her reply, via text, was:
“So, the sunset was pretty orange, and while the sun was still visible (from my room), it shone an orange light. When I wasn’t looking at it, it felt kinda like symbolism in the sense that the light at the end of my very dark tunnel was behind me and I couldn’t see it, and when I did see it, it was already gone.”
I asked if I could share her words here, she replied:
“Sure, so long as you say AND THAT IS DEPRESSION FOR YOU, KIDS!”
It’s been a tough day, emotionally. Lots of them are, of late. And today’s upset was despite making it outside for a walk with Miss S, something she’s not done for a very long time now. I should have been over the moon. But the reason we went out was tough….
Last week, an advert popped up on Miss S’s iPad. It was for the local private girls’ school, a picture depicting five girls linking arms and laughing, in their uniform. Miss S sent it to me and said she wanted to talk about it; she had searched it up on the map, seen it was fairly close to our house and so decided she wanted to try it there.
Knowing that the private, academic school would not be suitable for our girl, I tried to steer her thoughts away from it. On the map we saw an even closer school to our house, ten minutes walk away (discounting the closest her sister attends, which takes only a minute to walk to) and so Miss S switched her attention to that. I didn’t want to crush her hopes so I promised her I would speak to the school. Knowing full well that it was highly unlikely they would be interested in being as flexible as they would need to be, I called anyway, but I couldn’t get past the gatekeeper receptionist who told me I should put it all in writing.
Today we took a walk to this mainstream secondary, so that Miss S could get a feeling for where it was and what it looked like. On the way there she was asking me lots of questions, about the uniform, about whether phones were allowed in school, about what subjects she would have to learn. She talked about how she would like to walk to school herself and would listen to her music en route to keep herself calm. She chatted about how she wanted to walk unless it was cold or raining. She spoke at length about lunchtimes, wondering what food would be served and whether she’d get her beloved potatoes which were pretty much the only things she’d only eaten for lunch at her previous two schools. She talked about how the school would be full of ‘normal’ children and so she might stand out for being weird.
We came home, and she asked to buy a new game for the computer – called School Simulator. She acknowledged with a wry smile that it showed how desperate she was, to want to pay £15 to be able to create her own school. Sadly, the game proved too difficult for her to understand, and it just magnified all the feelings of failure which she has. She took herself upstairs to bed, put her face mask on and her soothing piano music on the iPad, and said she wanted to sleep forever until there was any news about a school for her. She then slept for 2 hours in the middle of the day, when she wasn’t even particularly tired. Just upset, emotional, and ‘bored’ of life because she can’t see the point. As she said to me on our walk, she just needs to know something about the future, to have a plan. It’s not a lot to ask, is it?
Of course there’s no point in me putting anything in writing to that mainstream school we walked to today, despite having reams of ‘evidence’ of needs in my SEND parent files. My ideas of what could help are outside of the box, off the wall, not in keeping with the school system. Our girl would be seen as a burden, an issue, unwanted extra work. Mentally, and financially in terms of support and paperwork. Because it all comes down to the cost, and the budgets at the end of the day.
But our girl wants to be at school. She wants to be part of a community. To feel wanted, to have friends. So much so, that she is prepared to try anything (apart from wearing trousers as part of a school uniform apparently). But that doesn’t mean she would be capable of bending to the system, of becoming that round peg needed to fit in the round hole. And instead of being supported to find an alternative for her, I am left to be the one to break her heart.
It shouldn’t be this difficult, should it? All it would take is a handful of individuals who really care, to come up with some activities and solutions. A chance for Sasha to join in with small group work, music or swimming lessons, anything, to keep her going and think that there is a point in life. She wouldn’t be able to access busy corridors or playgrounds, or the lunch canteen without extra support, but surely the fact that she wants to try should be acknowledged and encouraged?
She is being let down, massively. I’m trying to keep her afloat. Who knows where this will end?
Miss S is being badly let down by an education system that only seems to allow those with learning disabilities, like my son, to receive specialist provision when so many others, especially those with autism, really need a viable alternative to mainstream too. I’m terrified my own daughter is going to be one of those children who are too clever for special needs school but too autistic to fit in mainstream. Where do children like her and Miss S go?
What do you do when neither mainstream nor special needs school are right for your child?
We need wider provision in the education system so there are no more children, like Miss S, left at home desperate to go to school but with no suitable school to go to.
With special thanks to Steph Curtis from Steph’s Two Girls who writes a wonderful blog about autism and pathological demand avoidance. I would encourage you to read her blog and check out her Facebook page too.
I’m standing at a cliff edge crying out for help for my child. My voice echoes back to me in the chill and darkness of the valley ahead. I feel alone, cold, worried. Has anyone been here before? Can anyone help?
A tap on my shoulder from a speech therapist. A slither of hope in an otherwise wilderness. ‘Tell me about your child.’ So I do; readily, enthusiastically, because, after all, it’s my specialist subject. She huma and haws. Will she leave me back at that cliff edge again or bring me into safety. She offered me little really: Some visuals posted out to me to help me with my non verbal child. No working with the child. No courses available at present.
Like a knife wound to an already injured animal. Powerless to fight, alone, frightened. The word echoes on in the valley. Left alone again.
A pull on my clothing. Dare I turn around? Is it possible someone else may be there? Could this be the help I need so urgently, so desperately for my child? ‘Tell me about your child’. With tears running down my face, my heart beating fast, the fear evident with every word I utter: The paediatrician listens, refers on, moves on, one retires and we never see her again. It’s a fight for another appointment. Months past, years past until I realise what had happened:
Like they are washing their hands of my child. Nothing more they can do apparently. Hope disappeared. Back at the cliff point once again.
A whisper of my name. Hospital clinics this time: Neurology, medical paediatricians, ENT, eye clinics…in the end we’re just a number. In, out, maybe back again another time, maybe not. They might do further tests or they may send us to ‘no-man’s land’ also known in medical terms as ‘watch and wait.’ It’s another name for ‘do nothing and hope for the best.’ Some doctors we see more than once but not many. So much repeating our story, so many different faces. One day they all seem to come to an end and you age out, or they realise they have seen you too often, they start to recognise your face so it’s that time:
Like taking the trash out for the binmen because you have no more use for it. Like taking your old clothes to charity hoping someone else will one day see them and think they are of value. Either way you are no longer wanted. Off you go, but don’t hurry back.
Back at the cliff edge calling out for help again. Your own voice echoes back like it’s haunting you. Your child has aged, you are still pushing them in a wheelchair, progress was slow, your disabled child morphed slowly through the system to a disabled adult. Every time you passed go you collected another diagnosis.
Did anyone really help? Oh people referred on, people send out forms and ticked boxes but it never took long to be alone again. Services started, services ended. Funding run out, appointment drew further apart or never came at all and some professionals vanished like magic.
Reasons given range from lack of progress, no longer meeting criteria, too complex, not best use of time, or simply lack of resources. Rarely is it actually due to no loner needing the service.
Like a slap on the face, a stab to the heart, a sinking alone feeling that your child really doesn’t matter.
I stand at the cliff edge crying out for help for my child. My voice echoes back to me in the stillness and darkness. Oh there once were a few tugs, a few dull whispers, a few taps on my shoulders…but they are all long gone now.
I scream out: ‘Where is everyone? Please help me! Why did we get discharged?’
The echo comes back to me in the valley..’discharged’
Most 11 year old girls find their brothers annoying. My 11 year old daughter actually wants to marry her brother! Why?
Well at just eleven years old my daughter already knows her brother will need life long care. While other children her age are out playing with friends, having time out on video games or at after school activities she’s bathing her brother, making sure he is dried, helping dress him and reminding me to get his medication.
She’s never known anything else despite her brother being stronger, taller and at a different school to her.
She knows he can’t speak but knows exactly how to communicate with him. She plays with him, reads to him and soothes him when he cries. It’s beautiful but also heartbreaking; innocent but also concerning.
At eleven she knows already how vulnerable he is. She knows he will live at home and never be independent. She knows the chances of him learning self care skills like toileting, dressing, cooking and washing himself might never happen. She knows he will need full time care all his life.
She knows he won’t marry and she wants to marry him to make that happen.
As she used a flannel to gently bathe him I overhead the following: ‘One day I will marry you. Would you like that? (She waited for him to smile back and sign yes). That way you will be ok.’
I haven’t asked her to do any of this. She actually has more than enough of her own struggles to be contending with (autism, anxiety and eating issues to name a few) but her empathy and close bond with her brother is so natural and heartfelt.
Yet when I asked if she could access help as a young carer I was told she didn’t meet the strict criteria: she apparently wasn’t caring for him enough! Other than school and just three hours a week when she has a carer take her to activities (because I can’t take her anywhere due to having to care for her brother) she doesn’t ever get a break. Summer means seven weeks 24/7 with her brother as he gets zero respite in summer too.
She has witnessed seizures that have frightened her, surgery that has terrified her, meltdowns that have saddened her and self harming that has broken her heart…yet she was rejected from mental health services several times.
Of course she can’t marry her brother and neither should she even want to. She should have ambition, friends, a care free childhood and growing independence, but instead she worries if her brother will be ok when he gets older.
Why would an 11 year old want to marry her brother? Because she loves him so much that she’s terrified who will care for him when he’s an adult.
That’s not something any child should worry about but when she already sees how little support he gets now is it any wonder she worries for his future?
The fact any 11 year old girl is asking to marry her complex needs brother in order to know that he will be cared for should be a wake up call to us all. Her brother deserves better and she does too.
Vulnerable: to be weak, without protection, easily hurt physically or emotionally, easily influenced, prone to attack, naive, easily taken advantage of.
I used to think of vulnerable in terms of a small child unable to defend themselves, an elderly person living alone unable to fight off an intruder or a homeless young person who could easily be taken advantage of by others.
That was until I had a disabled child of my own.
My son was born vulnerable. Smaller than average due to being a twin, a little premature and struggling to regulate his own temperature.
He remained vulnerable as a toddler still crawling when all the other children were walking and in danger of being tripped over or having his hands trampled on.
He started nursery vulnerable, relying at three to be carried still, needing adults to guide him, feed him, change him and dress him.
He started school still vulnerable unable to speak, not understanding the world yet and still needing adults to do everything for him.
This year he finishes primary school and he’s STILL vulnerable. Still non verbal, now with significant learning disabilities, diagnosed autistic, complex medical needs, visually impaired, epileptic and still requiring adults to dress him, brush his hair, wash him and see to his bodily needs among many other things.
We can all have periods in our lives when we are vulnerable, perhaps driving in an unfamiliar town, starting a new job, living alone, walking in the dark or feeling unwell. Having periods of vulnerability keeps us humble and human but it’s uncomfortable, frightening and damaging to our self esteem. Most people go out of their way to avoid being vulnerable because the feeling of helplessness is disempowering.
Now imagine how it feels to have a child who will be forever vulnerable.
He will forever be prone to danger.
Forever be weak.
Forever without protection.
Forever easily hurt physically and emotionally.
Forever easily influenced.
Forever prone to attack.
Forever easily taken advantage of.
When people see special needs parents like myself and say things like ‘she’s very over protective’ or ‘still holding his hand at 11? I’d never do that!’ or ‘you need to give him more independence’ I wonder if they understand vulnerability? Can they see the fear in my eyes, hear the fast beating of my heart and notice the never ending worries swirling around in my head?
I can’t take my eye off the ball.
I can’t stop being concerned.
I can’t ‘back off’
I can’t die.
My child can’t go out to play, be alone, be sent to the shops for me, go out on a bike, see his friends (he hasn’t got any anyway), or even walk to school. He requires adult supervision all the time and always will.
He can’t speak, he can’t read, he can’t write, he can’t ask for help and he can’t get himself food. He’ll never live independently or work or marry because he will be forever vulnerable.
He was born vulnerable, he has grown up vulnerable and he will die vulnerable. My job as his parent is to protect, advocate, nurture, guide, teach and put in place everything needed to ensure he remains safe throughout his life.
The world is a scary place when you are alone, in the dark, unwell, somewhere new and always reliant on others for everything. Now imagine you had a child who was forever like that.
That’s what it’s like having a child who is forever vulnerable.
The following piece has been submitted anonymously for obvious reasons. No parent should have to live like this but sadly this is the reality for so many parents of children in the U.K. with additional support needs. It is vital stories like this are heard.
Why I live in fear.
Fear is the emotion I identify with the most. Some days it is all I feel.
I have two boys, let’s call them Harry and James. They both have additional needs. Harry is autistic and is not in school, he has been excluded several times and now refuses to go. James is undiagnosed but probably also autistic, he goes to school but has severe anxiety and is very unhappy there.
Harry has an EHCP, but it is totally inadequate. To get it changed I have to take the local authority to court.
I am afraid we won’t win, and that the fight to get the right help will be too much for me.
Meanwhile he is not in school (because his needs have not been met for so long) and his absences are being marked down as unauthorised.
I am afraid that I will be prosecuted.
I have asked for help from every conceivable agency. We have been turned down for a social care assessment because Harry is not ‘disabled’ enough.
I am afraid that we will be left until we reach crisis point and then suddenly we’ll end up under Child Protection, despite the fact we’re allegedly coping well enough right now.
Sometimes I’m afraid of Harry, because his behaviour can be very violent and challenging.
I do everything I can at home, but I cannot control the school situation which is causing so much anxiety and driving his behaviour. I am too afraid to tell anyone how bad it is, because I’m scared he’ll be taken away.
I am afraid of the effect this is having on James. My happy little boy has become serious and quiet and cries often.
I live on my own with my children and, because Harry is not in school, I am with one or both of them 24 hours a day without respite.Their needs are very different and there is only one of me. I can only ever meet the needs of one of them at the expense of the other.
I am afraid they are being robbed of the happy childhood they deserve.
I am afraid Harry will end up in the criminal justice system.
He is vulnerable to influence and bullying.
I am afraid that people will not be able to look past his extensive vocabulary and see his problems with social interaction and receptive language and jump to all the wrong conclusions.
I am afraid that my children will not have the happy future that they deserve, because rather than access to early intervention services we will be pushed beyond breaking point and irreversible damage will be done.
I am afraid that people won’t see my children for who they really are: Sweet, loving and kind little boys that still call me mummy and enjoy watching Paw Patrol, despite their age.
I am afraid for my future.
I gave up a well paid job to be a carer. I have no pension, I don’t own my own home and I have no savings. At least one of my children will probably still be living with me well past the age you would normally expect.
I am afraid of growing old alone, as the opportunity to meet someone feels like an impossibility right now, and it feels like I have been alone forever.
I am afraid what will happen to my boys if something happens to me, because no one could love or protect them, and no one understands the nuances of their behaviours and care needs, like I do. They would be so frightened, alone and confused if I wasn’t here anymore.
Four and a half years ago I wrote a blog titled ‘grieving for a child I haven’t lost’. It has been read over 100 thousand times since I wrote it and appeared in a number of books and on some popular websites. It’s been one of the most commented pieces I have written and evoked very strong feelings from people, both good and bad.
Time has passed and feelings change. Some advised me to delete that blog. But why would I be ashamed of how I truly felt at the time? You can’t eradicate history and it’s not healthy to pretend something wasn’t real when it was. I stand by every word I wrote back then and I know by being so brutally honest it has helped thousands of others feel less alone and more understood. Four and a half years ago my son was non verbal, smearing, screaming for hours, unable to read or write and needed 24 hour care. He was still in nappies at 6 and a half, having seizures, his behaviour was ‘challenging’ and every single day felt never ending.
He’s now 11. He’s still not toilet trained, still smears, now officially diagnosed epileptic, still has challenging behaviour and still non verbal. He still screams, he still can’t read or write or dress himself but something fundamental HAS changed: I no longer grieve for him.
I refuse to debate wether ‘grief’ is the right word to use for what I went through. I am the one that went through it and I know the intensity and depth of my feelings and the struggles both my son experienced, and in turn I felt as his mum and full time carer. The day I sat on that park bench and poured my heart onto paper was a day of truly understanding the reality of the pain, heartbreak and despair I felt. No-one has any right to undermine that unless they were living my life. My feelings and thoughts are not up for debate and never will be.
But things have changed now. A few days ago I took my son a trip to his favourite place. He now has a means of communication and I have learnt to listen. While he still can’t communicate verbally, after a lot of frustration and heartbreak, he found his own way of sharing his world through unconventional means. For him this is a unique combination of you tube, google street map, photos and using items of reference. He shows ingenuity and creativity daily as he tries to convey what he wants to wear, eat, and do. I have had, in turn, to be wiling to put my prejudices aside, be patient, and be willing to listen with more than just my ears.
Many misunderstood my grief as not loving my son. The opposite was in fact true. It was my intense love for him that made me grieve what I was missing as a parent and also the reality of what he will miss throughout his life.
But back to our trip and why I no longer grieve for my autistic son.:
He woke up on Saturday and made his way downstairs to ‘his’ chair. He pressed his iPads on (yes he has two!) and scrolled through his history of videos in YouTube until he found the one he wanted. He then used the other to go on google street map which is set to begin at his own home. Within minutes he had taken himself to the local train station on one iPad whilst watching local trains on the other.
I know my son and I know where he likes to go. Together we have a deep understanding now that has helped us both feel happier. He learnt that communication was worthwhile and I learnt the importance of allowing him to decide and control more about his life.
So I took him on a train to his favourite shopping centre to see lifts. On the train I watched as he flapped happily and looked out the window, holding his favourite teddy up so he could see too. He held my hand to get off the train and he took me to all his favourite lifts. We had lunch together in the food court and he dragged me by the hand and pointed to what he wanted. Then when he’d had enough we came home.
I’ve accepted that this is what makes him happy. He’s accepted that I actually have a use and by communicating other ways instead of screaming (which was his communication) he can achieve more.
I struggled but he struggled more.
Love helped us through. We both needed time.
In the four and a half years of us both needing time and changing I noticed something very important: attitudes to autistics are changing. We are much more accepting of difference now and the need to accommodate. Unfortunately though that acceptance still doesn’t seem to apply to parents as they journey through all the emotions involved in caring for, and living with their autistic children.
I am no longer grieving for my autistic son because I have come to accept and acknowledge that his life will always be different, as will mine, and that is OK. But it’s important that that is seen not as a ‘changing sides’ or ‘finally being positive’ but more about a natural journey of learning, patience and love. I haven’t suddenly become ‘accepting’ it was a process of coming to terms with the fact that my entire life will mean caring for my child and his entire life will involve others caring for him.
My son didn’t scream once on Saturday nor did he self harm or even show challenging behaviour. He was happy and so was I.
It’s still difficult at times, for both of us. But instead of sitting on that bench crying we now walk hand in hand past it as he flaps and laughs and drags me back to the car. He’d rather have fun at a lift or be eating lunch than walk around a park with his mum. That’s not something I grieve about now. It’s something I smile about instead.
Autism diagnosis continues to increase year on year. With that comes more awareness and hopefully more acceptance. More and more adults are now seeking diagnosis and some even ‘self identify’ as autistic. Not a day goes by when there isn’t a press article, a blog, a meme or a TV programme featuring or talking about autism. So has autism become a trend, a cool thing to be, even a lifestyle choice, and is this right?
Autism isn’t something that should ever be taken lightly. For many, my son and daughter included, it’s a significant disability requiring life long support. They made no choice is being autistic and they can’t choose to stop having it either. It’s part of them p, and always will be.
Recently I was having a discussion with someone and I was asked if I said my children were autistic before they had their official diagnosis. Of course they WERE autistic before they had their official diagnosis, they were born autistic after all, but prior to official diagnosis I said that my children were ‘under investigation for autism’ or ‘waiting to be tested for autism’ and later on, having sought advice from their paediatrician, I was told they had a ‘working diagnosis of autism’ meaning everyone was treating them as if they had an official diagnosis as we waited to reach the top of the waiting list so they could access services immediately based on need. I never once said they ‘were autistic’ as a formal diagnosis until it was confirmed.
Things were similar with my husband. He suspected he was autistic, as did every professional working with us, but as nothing was confirmed we didn’t say to anyone. That wasn’t because he wasn’t autistic it was because, until confirmed, it was based on suspicion, our own research and the thoughts of others who were unqualified to formally diagnose. Until formal diagnosis my husband didn’t tell anyone he was autistic or even suspected he was autistic, other than me. After diagnosis he was happy to share the news both privately and publicly.
Yet everyday on social media, in comments on this blog and in groups, I see self diagnosed adults with no formal diagnosis of autism confessing to know more about autism and my children because they ‘are autistic’ or ‘choose to identify as autistic’. It’s become ‘normal’ to be allowed to say you are autistic even without any formal diagnosis.
Autism isn’t like being vegetarian or vegan, it’s not a religion you choose or a trendy way of living or identifying. You can’t be autistic one day but not the next when it suits you. You can’t be at little bit autistic’ either and you absolutely can’t pick and choose autistic traits like it’s a pick and mix in a sweet shop!
Doing a Facebook quiz and getting a certain score does not mean you are autistic. It means it might be worth investigating further; nothing more.
Now let me clarify that I am well aware that the more information about autism there is the more likely many adults will discover they are actually on the spectrum. This is exactly what happened to my husband but the words of the doctor we went to at the time have so much wisdom in them:
‘Autism is something for the experts to decide, not individuals, because like any condition it needs thoroughly tested. For everyone’s sake it’s better to know for sure than assuming anything.’
Autism for all three of my family is a disability. In no other disability would it be acceptable to just say you have a condition without actually having proof. You may be diabetic or have Scoliosis or have arthritis but until a doctor or expert confirms this it is dangerous to take medication for those conditions and say you have them if you don’t. There is a valid reason why many services need an official diagnosis before you can access them.
Now I know formal diagnosis for autism isn’t perfect. I know there are a few people misdiagnosed by the experts and I appreciate waiting lists are long. I also appreciate that access to formal diagnosis isn’t always even available.
However, if you have truly and thoroughly researched autism and believe you are autistic then by all means share your thoughts privately with your family or close friends. By all means look for support and answers. Just don’t hail yourself as an expert on a condition that you haven’t formally been diagnosed with yet.
My issue isn’t with genuine people who are autistic but can’t access formal diagnosis for financial or other reasons. My issue isn’t with children being let down by the system and left to struggle. I do understand the heartbreak of knowing your child or loved one needs support but being unable to access that. These all need addressed.
My issue is people that see autism as a ‘lifestyle choice’, a way of identifying because it fits with their own thoughts even if qualified professionals don’t agree and then using their self appointed status to publicly assert themselves as an expert on those formally diagnosed like my children.
My issue is people who say they are autistic yet in the next breathe say ‘but I probably wouldn’t get diagnosed’.
You can’t just decide yourself you are autistic. Your own opinion of yourself isn’t of more importance than trained professionals. It takes more than one person to agree on a diagnosis of autism for a reason.
Autism isn’t a lifestyle choice, it’s a complex lifelong condition that affects people forever.
Don’t make my children’s disability into a trendy way of life. Don’t say you have a disability publicly until you know for sure. I want to understand more about my children’s condition but I don’t need self confessed ‘know it all’s’ who aren’t even diagnosed themselves telling me how to support my children.
Another school morning and another anxiety filled hour for my autistic daughter. Her life is filled with rituals, fears, worries and restrictions and nothing is getting easier. She has autism with generalised anxiety and the combination is awful.
It all starts with how she wakes. (Well actually it starts even before then because she often has nightmares.) She immediately has to check that everything is how she left it before she fell asleep. She has to have certain comforts in bed and they are all lined up just so. If anything has moved while she slept her anxiety becomes extreme.
“Mum, someone came into my room again last night!”
“Mum, I can find ….I need you NOW!”
Things must never change. Nothing can ever be moved. That’s her rigidity due to autism but then the anxiety kicks in when something changes and her whole world spins out of control before she’s even out of bed.
Anxiety, autism and sensory issues then affect what she will eat (usually the batter from chicken nuggets for breakfast because she has AFID (avoidance restrictive food intake disorder) and will only touch a select few foods.) Clothes have the same problem and I am down to just three pairs of school trousers she will accept and two polo shirts. I have no idea what I would do if my washing machine ever broke! Socks cause huge anxiety but going without them causes even greater anxiety again. She can’t cope with school shoes so she has trainers.
Then she has her rituals every morning. Set things must be fully completed before she can leave even when time is short. Cries of ‘mum have I got time for…’ can’t actually be answered with a no or she collapses in a heap unable to function. Her mind has so many open boxes that must be closed before she can step out the door. Leaving any open means her day will be preoccupied by one unclosed box and she can’t move on. She can’t ‘just ignore it’ or ‘forget it for now’ or ‘do that later’ because autism and anxiety don’t allow for that.
She has to please everyone. Homework must be done to the letter. Missing a night isn’t an option because anxiety tells her her teacher will somehow know and reprimand her. Her own conscience condemn her because she has to be perfect.
Even before she gets into school she must be first or second in her line because otherwise in her mind she is late. Anxiety makes her thoughts irrational but autism prevents her seeing it that way. Autism then distorts how she perceives the world and those around her then anxiety tells her she’s useless, foreign and not wanted. It becomes a vicious circle controlling everything.
She can’t break rules for fear of being shouted at. Fire drills sent her anxiety spinning because she has to go outside in indoor shoes and without a coat, two rules that she can’t break due to her anxiety and autism. Being outside at the ‘wrong time’ sends her stomach in knots for weeks afterwards. No amount of social stories or reassures help.
Every day is exhausting. Anxiety exhausts her as she lives on her nerves never feels adequate or good enough or perfect enough. Then autism tells her this will never change and that everyone looking at her is doing so because she’s done something wrong.
Autism affects her ability to communicate then anxiety prevents her overcoming this.
Autism affects how she understands social situations then anxiety makes her feel the world is better without her.
Autism means she must obey the rules then anxiety makes her fear for the consequences of being unable to do so through no fault of her own.
Autism makes her vulnerable then anxiety means there’s nothing I can do to change that.
Autism Is a lifelong communication disorder affecting how she communicates, thinks, understands language and interacts with others.
Anxiety is worrying, unease and fear about the unknown.
Together they are crucifying my daughter and so many others.
There is no cure but that doesn’t mean I give up trying to help her.
My daughter is beautiful, kind, caring, compassionate and smart. If only the awful combination of autism and anxiety left her alone others could see her potential and love even more.