Autism & Anxiety

I’ve been crippled by anxiety for the past 9 months. It’s focused around travel – driving my car, going on public transport, flying, etc.

These are peculiar things for me to fear given my love of travelling and my hate of being stuck anywhere for too long.

I thought for a long time that this particular anxiety was yet another side effect of the menopause, but I’ve recently rethought that.

Just under a year ago babyboy (who’s 8 now) was diagnosed with autism, sensory processing disorder and severe anxiety. He may also have ADHD and PDA, but the consultant was reluctant to diagnose these right now opting to wait until he’s older.

Just a two months later I had my first ever panic attack while driving and despite CBT it continues to plague me.

I think I’ve finally worked out why:

It’s because I’m afraid that something terrible will happen to me while travelling and my babyboy will be left without me.

And he needs me so much.

 

He is very verbal but despite this cannot communicate what he needs. I read his mind (at least that’s what it feels like) and anticipate his needs. I speak for him when he can’t, not just as his advocate but as his voice. I understand his emotions when he can’t.

I hear his fears without his words and I hold them tightly in my heart. He knows he is safe with me, that we’re a team – because I tell him this about 20 times a day in a bid to ease his anxiety.

I understand his meltdowns: I know when to hold him and when to leave him, I know when to weight him down by lying on him or when to rhythmically firmly pat my hands up and down his back, I know when to silently slide him the emotions thermometer so he can point out how he feels, I know exactly how to touch his back, his arms, has legs to help calm and soothe him. I know how to cope with a meltdown without making him feel bad.

I know what to do to try to make him feel safe when his own anxiety overtakes him and prevents him from being a little boy.

I understand his need to come home from school and hide in Minecraft – a world where he has total control – after a day of having his senses overloaded by the sheer volume of school, the loss of control for him, the demands made him and the effort it takes for him to mask how he feels.

I know what foods he will eat and what he definitely won’t. I understand not to force him to try new foods, that it’s not just the taste that puts him off it can be the smell, the texture or just his own fear of the unknown.

I understand that quite often he wants to try new things or go to known places, but his fear and anxiety prevent him from doing so. And meltdowns will occur if I try to make him go.

I can tell just by looking at his face or his body language that he’s struggling. I know when he needs his headphones or when he needs to go home. I understand when he’s got to sit under the table, hide under a blanket or sit in the corner facing the wall.

I hold his hands as he sits on the toilet for a poo because it scares him. I go with him to the toilet for a wee cos he’s afraid to go on his own. I don’t know what he’s afraid of, I just know he is and so I support him.

I don’t force him to go to toilets that are not ours because this is too much for him.

I seek out stairs as he’s terrified of lifts and escalators. And then I count the stairs with him otherwise he can’t use them.

When I see he’s getting antsy, going stir crazy cos he hasn’t wanted to leave the house I blast dance music and dance with him until he’s collapsed on the floor his excess energy spent.

I listen to his screams and experience his rampaging, often violent, meltdowns as calmly as I can desperately trying to not make them any worse than they already are.

I don’t understand the whys and what’s of all his fears and anxieties, but I don’t have to I just need to stand beside him, hold his hand and make sure he feels safe.

I don’t understand his inability to communicate despite having a huge and impressive vocabulary, but I don’t have to I just have to listen to his other forms of communication: his behaviour that tells me so much more than he can. And translate that for the world to understand.

I am his safe place, his safe person. His safety.

And I now know that the root of my anxiety lies in the fear that if something terrible happens to me there’s no-one who can help him navigate life, no-one to love him for who he is and make him feel safe.

Stop Bullying our Vulnerable

What our government are doing to and saying about our vulnerable is bullying.

With each and every new welfare policy they bully our vulnerable and children while pushing them further into poverty.

With each and every hate-filled news story and feature splashed across their pages our mainstream media is complicit in this insidious bullying.

Say enough bad things about a person or a group of people enough times and it becomes truth.

And the masses gobble it up glad it’s not them who are being picked on.

Before you know it society’s vulnerable are the scourge: the reason for all the problems our country faces.

You may have heard this before but let me reiterate it: our country’s economic problems have not been caused by disabled people, the unemployed, single parents, chronically ill people, low paid workers or immigrants. They have been caused by the economic policies of government present and past.

Unfortunately, children of all ages experience bullying every day in schools. And only a brave few are willing to stand up for the bullied.

Bullying, and the failure to effectively deal with it, in schools is so widespread that This Morning launched a ‘Be Kind‘ campaign earlier this year to encourage teenagers and children to be kind to each other in a bid to help stop this destructive bullying.

But how can we expect our young people to understand why they should be kind to each other when they see hatred, exclusion, blame and bullying from those in charge and in every mainstream media outlet they see?

Bullying has become the norm in British society right from the very top. As has the failure to stamp it out. Instead we force victims to change and/or leave schools while the bullies continue to rule the roost.

But This Morning is right. We should all be being kind to each other.

Regardless of your position in life all it takes is one accident, one genetic issue, one stroke, one cancer diagnosis, one job loss for any one of us to become one of the bullied vulnerable.

Will you stand up for them now, stand with them, stand for them? Or will stand quietly with the bullies and continue to force the bullied vulnerable to change, to hide, to die hungry and poor, to fight for the lifeline of benefits and disability cars that will quite literally save their lives?

Because we are all just one accident away from becoming so vulnerable we rely on the state and our fellow humans to look after us.

Stop bullying. Be kind. Look after each other, stand up for each other.

Yes, I am looking at you Theresa May, Philip Hammond, Rupert Murdoch, et al.

#stopfundinghate

#bekind

#stopbullying

Budget 2016, ESA Cuts, PIP and Welfare Cuts

Until a ’cause’ directly impacts upon your life you have little interest in it, it is not important to you and does not affect you in any way.

Perhaps you can feel sympathy towards people afflicted by disability, mental health issues, poverty, homelessness but as it doesn’t directly affect you’re less likely to campaign for it.

With Teengirl’s diagnosis of Ehlers Danlos Syndrome disability suddenly directly affected us. And Teengirl is now eager to get involved in helping change things for people with disabilities.

Last night after a long chat about why the world isn’t more disabled friendly we came to the, not too startling, conclusion that it’s because it affects a minority not a majority.

Those not affected by it don’t ever consider it.

Before I had children I’d no idea how hard it would be to get across London on the tube with a baby  in a buggy. Prior to losing my job last year I hadn’t considered how people on benefits were made to feel like scroungers and how welfare cuts and changes would impact upon vulnerable people who have been propelled into joblessness through no fault of their own.

During our chat we realised that our current (and previous) government is made up of people who have never experienced the things that are important to many of their constituents. So they disregard them because they don’t what it’s like to have their lives crash around them suddenly.

How many MPs have ever had to claim benefits? How many are single parents? How many MPs are disabled? How many have suddenly lost their job without a safety net? How many MPs have lived on less than the average salary? How many have struggled with mental health issues? How many MPs have had their lives turned upside down in a car crash?

How many MPs actually access the NHS? How many have chronic illnesses? How many MPs have got to the end of the month, looked at their bank account and realised there’s only £20 left and had to make the hard decision between food or electricity?

How many politicians have lived in real poverty?

You see, if the people with the control over our country have not experienced the many various issues that affect so many of us in so many different ways they cannot effectively, considerately and consciously govern.

Because they disregard so much of what affects us because they’ve never lived it or felt the impact upon their lives.

It’s time, I think, for our Houses of Parliament to be filled not with sociopaths, nepotism and moneyed old boys but with men and women who have lived in the real world.

I want to see a government made up of people with disabilities, single parents, people who’ve experienced real poverty, people with mental health issues, working class heroes, middle and upper classes, all colours, all religions, all sexualities, young people – all together in one big melting pot of a parliament truly representing the people of this country.

With each of them earning an average wage and a normal level of expenses.

Not a parliament filled with people representing the good of the party, people chasing the money, fame (infamy in some cases), power and control with no knowledge of real life.

I’d step into the political arena in a second but there’s no party I could affiliate myself with.

None of them represent me or the future of my children. 

Twenty One Pilots – An Open Letter

Two years after Teengirl dragged me along to a Twenty One Pilots gig in a tiny Brit venue we’re finally getting to see them again, this time in the much larger Brixton Academy.

In honour of going to see our family’s favourite band on Wednesday here’s my original blog (complete with my gig pix) I posted when Twenty One Pilots first blew me away:

Teengirl dragged me to a gig where she described the band as “a screamo, ukulele playing, rapping, emo, piano playing, dance band” I thought this is a band that needs to pick a genre!

And so it was with no expectations I went along to see this gig in a tiny nightclub in Brighton filled with teenage girls and the odd very drunk thirty-something man – a few of whom got carried out of the audience by the bouncers while the teenagers all behaved themselves!

After my experience standing on the balcony of The Haunt looking down on the moving sea of bouncing girls I was moved to write an open letter to the two men of Twenty One Pilots.

Here it is:

Dear Tyler and Josh

As a mum in my early 40s with a life full of kids I don’t give over any of my time to listening to new music and new bands.  So I had never heard of you and despite teengirl trying desperately to get me to listen to you and repeatedly telling me I’d love you, I am saddened to say I resisted and so you were entirely new to me when I saw you on stage in your balaclava masks that Monday night.

To be honest with you I wasn’t looking forward to seeing a band who rap.  So I thank you from the bottom of my heart for not being stereotypical misogynistic, show off swag fuckery, violence inciting rappers.

I also appreciate that you don’t sing meaningless songs of great love or lost love or boppy pop shit with lyrics that make no sense or are overly sexually explicit for the age group listening to them.

With fame comes great responsibility: your songs could just be something to dance to or they could be the one thing that allows our teenagers to feel heard, listened to and understood.  I am grateful to you for taking that responsibility seriously by writing poems (and I do believe them to be poetry) that can change a teenager’s intention, open their heads and their hearts.  Too many in the public eye don’t take their responsibility seriously and far too many abuse the power given to them by the public (yes Mr Politician I am talking about you).

Twenty One Pilots

All we all want is to be heard and to be acknowledged, be that as adults, toddlers or teenagers and I thank you for writing lyrics and music that does just that.

I thank you for starting the conversation with our teenagers about self-harm and suicide, for opening your ears and your eyes so you can open theirs and mine.

Thank you for acknowledging that these very real and very strong emotions exist in their hearts and take over their brains.  As a mum, I appreciate your fear for our teenagers and I am grateful to you for telling them you understand.

Because sometimes just the understanding from an adult is all it can take to save a young person from the pit of hell.  Far too often we as parents and responsible adults push their fears to the side, don’t allow them to express them, tell them they’re not real, not to dwell on them, to just get over them.

Tyler putting his pain out there for all to see

As a parent I wonder if we do this because we are afraid that if we poke the monster, pull back the layers of this raw anguish we’ll make it worse for them?  And so they never get given the tools to deal with the pain of simply growing up in a society that says it’s not ok to feel when all they can do is feel as they look inside only to find themselves wanting.

And then when our children hurt themselves intentionally we rail against the world, god, the internet searching for someone to blame instead of visiting some introspection into our lives.

Thank you for writing raw, honest and authentic lyrics and music that really, truly speaks to teenagers: lyrics that let them know its ok to be different, to be curious, to wonder what if, to question the status quo, to ask how it might be changed for the better.

Teenagedom is the beginning of all things self: an egocentric rollercoaster of self-awareness, independence and boundary pushing.  Being a teenager means inspecting yourself far too often when the self-awareness monster rears his ugly head, feeling alone under the microscope of peers inside the institution we call school.

And so they pull down a mask and become a façade to fit in – something you, Tyler and Josh, obviously understand and are not afraid to admit.

Tyler pulls down his mask

I cannot thank you enough for being authentic, honest and real.  You, Tyler, are a poet.  I hear haunting spectres of Sylvia Plath and Stevie Smith in your words.  When I was a teen their words were my saviours: they showed me I wasn’t alone, I wasn’t weird and that to question death and love in the same sentence was absolutely normal.  I take my hat off to you for your intelligent metaphorical rhymes that speak volumes to my daughter and other teenagers.

I love that you put intense, honest and empathetic lyrics to a bouncy happy beat – a beautiful metaphor of teenagerdom.  I feel your pain as I dance along.  And I understand teengirl just that little bit more when she tells me her favourite Twenty One Pilots song – her favourites change with her moods.  Just as I love that you break the music rules, don’t fit into a box and can’t be labelled.

Bathed in the light

Teengirl gets that you get her.  She bounces to your beats and shouts along to your lyrics in the cool way only a teenager can.  And I know that your words have gone a long way to helping her heal and understand.

Over my many years loving music there have been only a few musicians with whom I have become obsessed, even fewer who have touched me and spoken directly to me.  In that short list you’ll find Janis Joplin, The Doors, Leonard Cohen, Bob Dylan and BrightEyes.  And now, Twenty One Pilots have joined that list because I am already quite obsessed with your rhythms and your rhymes.

Thank you for respecting the responsibility of fame.  Please don’t let the industry change you.

I can only begin to imagine how proud your mums are of both of you.

With lots of love and thanks,

Mumtoteens

PS What is a Pantaloon?

Twenty One Pilots – Tyler and Josh

Sea of teenagers hands in the air at Twenty One Pilots gig

My photographs – all the photographs  featured in this blog belong to me, I took them, they’re mine, so please don’t just lift them. If you want to use them please give me credit (mumtoteens) and a link back to this blog. If you reuse my pix without credit you will be asked to remove them.

#ifIgrowup

When I was 8 years old I told my teacher I wanted to be a writer, not just any writer but the new Enid Blyton. Aged 12 I told my teachers I wanted to be a journalist. Having not changed my mind in the intervening years at 16 years old I told my careers teacher I still wanted to be a journalist.

He said: “Don’t be daft you’ll never do that, it’s not what you know it’s who you know. Journalism’s not for the likes of us.”

Just a few months later I left school at 16 and became a secretary. I spent a few years temping and travelling before I got pregnant with teenboy.

Aged 22 and pregnant I found a new journalism course starting in a couple of months. I applied, wrote an essay, sat the tests, aced the interviews and was accepted.

I then had to come clean and tell them I was 5 months pregnant and couldn’t start the course in a month. One of the lecturers said: “I wondered if you might be pregnant cos when we were interviewing you your stomach kept moving. But you can’t ask, can you?”

I started chasing my childhood dream the following year.

Once qualified I broke stories that changed people’s lives, changed laws, exposed scandals, lies and frauds as well as told the stories of the good people so often do. I loved every second of it, going back to work when Teengirl was just a few weeks old.

It all ended, however, when Teengirl suffered a brain haemorrhage at 9 months old and wasn’t expected to survive and I ran out words.

But I never ran out dreams…

Teenboy

As a little boy teenboy wanted to be a pilot, a train driver, a lorry driver. He was obsessed with all forms of transport. Unfortunately he still is as any of you who’ve read this blog know!

Now at 22 his dream is and has been for a few years to be a film maker and editor. Film-editing being his preferred profession.

Thankfully because we live in the UK teenboy got into Uni three years ago and graduated in summer 2015 with a 2:1 degree in Film and TV Production. Currently he’s got three jobs: working in a bar, teaching filmmaking and occasionally filming and editing for a start-up YouTube channel.

But he’s not finished there; he still has plans, big plans. And I think, given a few years, he’ll fulfil them.

Teengirl

When my princess tomboy was a little girl she wanted to be a vet during the week and an artist at the weekend.

At 17 those dreams have evolved slightly. Right now she’s studying for a BTEC in computer game design and already has a GCSE in this.

She’s not sure if she wants to study this at Uni, she quite fancies trying her hand at photo journalism or perhaps fine art or maybe political journalism or creative writing. But then again she might not even go to Uni and train as a tattoo artist or a scuba diving instructor. Who knows! She has so many opportunities at her feet it’s hard to decide. But she’s just 17 she shouldn’t know what she wants to do for sure yet. She’s still got plenty of time for dreaming.

Babyboy

Right now he wants to be an alien! And a lot of the time he wants to be a Lego builder or designer. Big impossible dreams you may say. I say the bigger more imaginative the dream the better. And while he’s reaching for the moon he might just hit a star.

What’s amazing for my children is that the world is their oyster and they know it. They can do whatever they want as long as they can dream.

#ifIgrowup

#ifIgrowup

International children’s charity the Railway Children help vulnerable children who live alone and are at risk on the streets at home in the UK and abroad. It urgently needs to expand its work in East Africa where thousands of street-connected children are at risk of violence, abuse, exploitation and prostitution.

For 7-year-old Joseph who lives alone on the streets of Nairobi in Kenya every day is a matter of life and death. He doesn’t know what he’ll when he grows up. He doesn’t know if he’ll grow up. He has no need for dreams.

The Railway Children are fighting to save children like Joseph to give them a future. Once these children are safe and well-cared for and back in school, they do have dreams and ambitions, just like any other child.

You can help these children by donating to the #ifIgrowup appeal at www.ifigrowup.org.uk where until 22 January 2016, all donations to Railway Children’s If I grow Up campaign will be doubled by the UK government, helping them reach twice as many children. Proceeds from the appeal will fund Railway Children’s vital work in the UK and abroad; match-funding from the UK government will fund work in East Africa.