Justice for the disabled and their parents

How is it that you can be falling apart, and nobody notices?Why is it, that people see, but they don’t speak. It’s private, and anyway, there’s nothing that can be done? 

I feel so lost and alone. I’m surrounded by well meaning people, who cannot help me, or my son. 

 Why is it fair, that average people, seeking average lives, can be given these extra challenges, and then be cheated by a system that’s designed to help them?

How is that ok? 

The majority of parents I know with special needs children are on medication. I am one of them. At first, I was one of the only ones in my circle who wasn’t medicated. Then after a difficult Christmas, I joined the club. And yet I’m still anxious, stressed and depressed. 

The stress from looking after a child with additional needs is huge. Then add in the requirement to become a warrior, an advocate, a hero, to just provide your child with basic needs that other more abled children are entitled to; because it costs more money to get your child there. It’s a huge responsibility. And we all do it. We fight, we fight and we FIGHT. Because we love our children. But it’s so hard. We are all so drained. So empty and tired. 

I know my friends care. I know that my family care. I know that they try and they love and they mean well. But…

I read a story today about a man who became suicidal looking after his two autistic sons. Their needs weren’t being met. His needs as a carer weren’t being met. I haven’t felt this anger since the pre-diagnosis days… but I felt it today. It was that feeling that none of you understand. I love you all for trying to, but you don’t. And you never ever will. There isn’t a single person, who doesn’t live this life, who understands. And because of that, we are on our own. Relying on each other. All struggling against the system, and against our own anxieties and fears. Trying to hold each other up whilst we’re all falling apart. 

I’m glad others don’t understand. I wouldn’t want them to. I wouldn’t want to if I wasn’t in this situation! It’s a burden I wouldn’t want to impose on anybody. No one should have to worry about how they’ll stop a 14 year old boy harming himself in a few years time when he’s too big to carry, or worry about who will take care of him after you die. Or come to terms with the fact that you will never ever retire and relax in your later years. But here we all are, struggling to come to terms with the lifestyle that we didn’t expect, and the system that consistently lets us down. We love our children, but the understanding and support isn’t there. And I am so angry. 

Please don’t misunderstand, I love my child. Fiercely. Crazily. I would do ANYTHING for him. But I am watching him go through a system run by a government that doesn’t provide for him. That doesn’t care if he becomes a functioning adult. There’s only so much I can do. And these early years are slipping away, they’re gone. These early interventions are what my son really needed to be able to grow up and thrive as the amazing individual he is. 

So I have to put my hands up, and say “I did my best” and make do. Knowing that he could have become so much more. SO much more. Because of politics. Because of circumstance. Because of bullshit from the people who say they care, but at the end of the day, it’s just a job. 

People with disabilities have been kicked again and again with a scandalous disservice. Because I honestly believe that the government feel they are the easiest group to take away from. After all, they are a drain on society? Why invest? Well these people could be a HUGE investment to society if they were given a chance. 

I am so angry. 

I want to change things. 

I wish I could change things. 

Vote. 

Does it get easier?

I’m 3 years into my autism journey. At the beginning, when the shit first hit the fan, I was in a total fog of disbelief, trying to accept it, learning about it, adapting to it, and grieving hard for the child I felt I had lost. Even though my child was still with me. I loved him, but our future was bleak and uncertain. 

Somebody, somewhere, with more years on their journey, told me “it does get easier”. 

This week, I’ve had different autism mum’s from different areas of my life all say things to me about this concept of things getting easier, and it’s made me question whether or not this is really true. 

Does it ever really get easier?

I’m 3 years into our autism journey, not exactly an old timer, but definitely not a newbie anymore. When I clock a parent sitting alone at a SEN event, looking a bit lost, I’ll always sit down and have a chat with them. It’s a personal mission of mine, as I remember being where they are, and I don’t ever want anyone to feel as alone as I did back then. 

I ask about their child. Listen to their feelings about the impending or recent diagnosis. I tell them they’re not alone with this and I’ve been where they are. Although they’ve just started to walk a path they didn’t choose… there’s an army of us all walking it too. And we all stick together. That’s a beautiful fact. 

And I’ve said it to them sincerely, “It does get easier”. 

We get used to the diagnosis. We get used to talking about it with others. We become used to our child behaving differently to other kids. We learn more about autism. We start to parent in a different way. We learn about how they see the world. We adapt our hopes and dreams for our child. We start to suss out the system. We find other autism parents. People who ‘get it’. 

So it does get easier. I’m sure of that. 

Then I listened to two autism mum’s this week. I listen to the mum with the high functioning child with PDA, who comes home from school and punches her in the face because of the anxieties he’s built up through the school day. Violent outbursts are regular. She can’t take him out at the weekend because his anxieties are too high for her to socialise him with other children; so she feels trapped in her own home. 

I listen to the mum with the severely autistic, non verbal child, who has given up hope of ever hearing her child speak, or make a friend. She worries daily about looking after him as an adult, and is already planning his care when she dies. He’s only 6. 

Does it really get easier? It didn’t seem to me like these mum’s felt so. 

In my personal experience, I do believe that life overall has got easier. The Pickle has changed and adapted, and so have we. The challenges we have though on a day to day basis, are very real… 

You can’t change it. You can’t fix it. It’s the permeance of it that can make it so overwhelming. 

I started to think about what gets me through the difficult days. And I believe it is the support I have around me.

It’s the family who love and accept him, who take him for an afternoon when I need a break. 

It’s the friends who listen and understand, who never judge or tell me what I should do… because they get it. They’re living it too. And when all is said and done, we can meet up, drink coffee (with a little vodka on a bad day!) and believe it or not, we can all laugh hard about the crazy lives we lead. It keeps us sane. 

It’s the friends without kids, who take me out for dinner and drinks and let me just be myself for a few hours again. 

It’s my daughter. I feel a little nervous of admitting this one… I am very lucky to have her. I don’t love her any more or any less than the Pickle, but she has given me back some of what I lost. I love the Pickle to the moon and back, he is who he is, and I love him for who he is. He’s amazing, and funny, and clever. Autism is a part of who he is. But as a parent, when we got that diagnosis, it was hard to come to terms with the realisation that my dreams and wishes for the baby that I held in my arms, were never mine to have. 

I think things do get easier. But there will always be those days… when you just want to curl up and disappear. The days where you have nothing left. And it’s those days where the support you surround yourself with, will pull you through to fight the next one. 

So my advice to any parents starting their autism journey, whatever your child’s age, developmental stage, high functioning or severe… it is no better or worse than anyone else’s journey. We’re all going through it together. Different challenges, same diagnosis. Always say yes to help. Don’t be proud, don’t try to do it all alone. It’s the village that surrounds you, that will keep you afloat when you feel like you’re drowning. 

Set yourself up with the right tools you need to do the job. That’s what every successful workmen does!

Today might feel like the worst day of your life… but hang in their dear one; you are enough. 

It will get easier. 

X

It’s happening again…

Today I picked up the Pickle’s home/school book and opened it. My heart sank. 

It’s happening again. 

The Pickle spent his first year at a mainstream school, then we moved him to a specialist school. He needed to be moved, his sensory issues were making him more and more isolated from his classmates as he couldn’t join in, stay seated and needed to be removed a lot from the classroom. 

The other problem when he was at mainstream… was pushing. 

“Pushing” is a word I’ve grown to absolutely hate. I used to associate it with ‘pushing a door open’ or ‘pushing an agenda’. Now I associate it with “Pickle pushing small children over.” 

It was a nightmare of epic proportions. It started the year before at nursery. They were overrun with kids, understaffed and not trained whatsoever to deal with autism. He used to get overstimulated by the noisy, chaotic environment, he wouldn’t do what the others were doing, so he was left to his own devices. He didn’t know what he was supposed to be doing, which made the anxiety and sensory issues worse. Then he would start to push others. Hard. 

It started slowly, he did it once, then a couple of weeks later, he did it again. Then the gaps in between got less, until suddenly, all the children were scared of him. He had always been the quiet child that no one really noticed. Now he was a crazy tyrant, running around the room, pushing over little girls like dominos. 

Most of the children wouldn’t play near him. They would walk away if he came near. Some of them would sit down on the floor as soon as they saw him coming for fear of being shoved. Sensible really, but it broke my heart. 

It became a huge problem. I started to dread going to pick him up. Every single time, there was an awful story. I started to have special arrangements to pick him up from a different area, as the transition of me picking him up, speaking to his key worker would send him into a pushing frenzy. I was the only mum who had to hide round the corner to pick up her child. 

One summer day, the kids were all out in the garden playing on the trikes and in the sand. I went to collect the Pickle and went into the garden. The Pickle was peddling around on a bike. I had a quick update with his key worker, told how many times he had pushed that day… then we both clocked him at the same moment running towards a girl (it was always girls?!) at full speed. We both shouted and ran towards him but we had no chance. He pushed this little girl so hard into the brick wall behind her. She smacked her head and went down. There was a huge commotion, blood, tears, a crowd of excited children and worried adults. The girl was picked up and rushed off. I dragged the Pickle towards the door in slow motion with him hanging off me giggling and everyone staring. I was the mother with no control over her son. The mother who’s son hurts other children. The mother with that child you don’t want your child to be around. 

Summer holidays came and went… I couldn’t take him anywhere, trust him to play near other children. He pushed a child off a playground bridge. He pushed and pulled hair in soft play. I had a 3 month old baby, so I couldn’t shadow him. The summer holidays were long. 

September came. Pickle started school…. and the pushing stopped!! Amazing! Happy happy days! 1 week went by, 1 term, Christmas came and went, no pushing!

The second term started well, then one day I came in to collect him, and was told he had pushed another child. 

The hair on my neck stood up, I got that horrible feeling in my stomach that I hadn’t felt for a long time. “Oh crap” I thought. 

Please let it be a one off. 

And it was… until a few days later, when he pushed again. 

Within a month, we were back to an obsessive pushing regime. It impulsive, it made no sense. No triggers, no patterns. He would get a look in his eye, and just go for it. Always the girls, or smaller children. He started pushing his baby sister at home too. I couldn’t leave them for a second, not even to go to the bathroom. I got so stressed out that I bought my first pack of cigarettes for 6 years. 

We tried EVERYTHING! ABC sheets, positive reinforcement, removal of privileges, time outs, visuals, we got the autism specialist teacher involved (although she couldn’t get in to see us for 3 MONTHS!!!). 

In the end, the behaviour was becoming so difficult, that the headteacher of the school suggested that he might be better off in a specialist setting. I was heartbroken, but decision was made that he should be moved. 

I had 2 months before the end of the school year, and I put every energy I had left into finding him a new school, then securing him a place for September to avoid extra upheaval for him. That had its challenges too – the school wasn’t sure if they wanted to take him because of his speech delay, and because of his sensory needs (I.e the pushing). 

Well I fought hard and I got him in. He started in September last year. 

It was the best decision we ever made for him. His development soared. His language, social skills and understanding all blossomed and he was genuinely happy. Every single day. He loved school. We were all happy. Things were good. 

He didn’t push. He was involved in everything his class did. 1 term goes by. Then Christmas, then into our second term. Half term came and went…. I’ve got trust in him again around other children. I can relax more when we’re out. I think often about how much better things are, and how well he’s doing. 

…Then I opened his home/school book on Thursday. 

What the actual f*ck?! Biting? BITING??!

The Pickle has a need to chew (another sensory thing) but he’s never ever EVER bitten a child?! He was queueing up at school to wash his hands, and bit the child in front of him. Seriously???

Same familiar sinking feeling in my gut… same thought process. “Maybe it’s a one off’. It sounds like it was dealt with well… he’s at a school that understands behaviours like this… “Hopefully it was a one off”. “PLEASE let it be a one off!”

He comes home from school the next day, I nervously open his home/school book…. nothing!!! He’s had a great day. Phew! “Hopefully just a one off”.

The Pickle comes home today, I open his home/school book, and my heart sinks. 

It’s happening again…

I’ve played this game twice now. The biting is new, but I know how it works. I know we’re about to have a really… REALLY tough few months. I know this is going to get a lot worse before it gets better. I’m already mentally preparing to start working with the school. Daily phone calls. Visits. Shame and embarrassment with what I’ll hear on a daily basis. Fear of the other children rejecting him. Wondering what other parents are saying when their child comes home with bite marks. Not being able to take him out without an incident. I’m ready to do all the interventions again, that I know deep down, probably won’t work. Not until he decides that he’s ready to stop. 

I’ve played this game before, I just haven’t figured out yet how to win. 

Wish me luck. 

The Picklehead Comedy Show

Sometimes I have to take a moment to sit back and feel very proud of myself. I have somehow managed to produce a beautiful human of a boy who is very bloody funny. 

He has a brilliant sense of humour, creates his own games and jokes, and when he gets the giggles, so does everyone else in the room. You have to see it to believe it. He doesn’t let a little thing like autism get in the way of having a good laugh. 

The best moments though, are the ones that he doesn’t even realise. When autistic logic and the mind of a 5 year old collide, you can really get some little gems. 

Now these might only be funny to me, because, well.  I’m his mum!… We all think our own kids are the funniest. But here’s a few of my favourites that I wanted to share with you: 

Counting ducks

We were practicing counting in the bath. (The Pickle was in the bath, I was kneeling on the cold floor with a warm glass of wine! Such is motherhood glamour…)

I put 5 ducks in front of him and ask him “how many?” 

Pickle says “1,2,3,4…”

I say “Can you count in your head?”

Pickle looks at me with an ‘ok whatever’ expression, then calmly gathers up the ducks, balances them on his head with a deadpan expression, and says “1,2,3,4,5!”

Gotta love that literal thinking. 

Santa

Last Christmas, the Pickles school had a cheery Christmas fete. The normal sort of thing. Raffles, tombola, and the opportunity to meet FC, the big man himself. Now last time the Pickle met Santa, he was 2 years old, screamed the whole garden centre down with the mother of all meltdowns. But we figured, hey why not. Let’s try again. So we queue up, pay our pound, and take the Pickle in. We’ve prepared him for this over the last week, told him all about Santa, and his understanding is good enough that we thought he might understand and maybe even enjoy it. 

We obviously prepared him very well indeed, as he sprinted ahead of us, into the grotto at 100mph. It’s all dark, and as I walk in, I jump out of my skin when a ridiculously loud “HO HO HO!” booms from Santa’s tent. 

I walk in to see the Pickle frozen to the spot staring at Santa. He looks horrified! It’s really dark, the only light is coming from the rave worthy, offensively flashing plastic Christmas tree, next to the big fat figure sat in the dark chair behind a big felt beard. Just some creepy eyes and a nose poking out. Jesus, I would have been scared! 

So Santa starts yelling at Pickle… “WHAT’S YOUR NAME? HAVE YOU BEEN A GOOD BOY??” Poor Pickle is still frozen to the spot, wide eyed at this monster. So I do what an autism mum does… lean down gently next to him and tell him quietly and gently what to say. This tiny, quiet, mouse like voice comes out of the Pickle, as bless him, he tries to answer the noisy questions as best he can. His body is completely stiff, and I’m wondering if now is the time to wrap him up under my scarf and start running. 

Suddenly, in the middle of “AND WHAT DO YOU WANT FOR CHRISTMA… ”

The Pickle stands up tall, puts a finger to his lips, and crossly shouts “SHUSH!!!!”. 

I have to give the boy credit. It was even louder than Santa. And it shut him right up too! It shut up everyone in the tent! There were a few seconds that felt like an eternity, where nobody said anything. Everyone just waited… Then Santa very quietly and meekly said “here’s some chocolate for you then. Merry Christmas.”

The Pickle took his chocolate, said “Thank you Santa” (yes!) and walked out of there like he owned the goddamn grotto. Like his army, we marched out faithfully behind him, leaving the tent of doom behind us. I overheard someone on the way out say; “well you can’t really blame him… he is a bit bloody loud!”

I was very proud of the Pickle. And noted to myself to slip his speech and language therapist an extra fiver! 

Nice one little man! Even when you’re scared, don’t take any crap from a big, fake Santa that shouts at you. 

That’s my boy that is! 

If you want to be strong…

If you had asked me 6 years ago how I would cope having a child with special needs, I probably would have said “I couldn’t do it”. 

If you asked me 3 years ago how I was going to fight for my child’s every educational and social need for the rest of his life, I would have told you “I don’t know. I don’t think I could do that.”

If you had asked me 12 months ago how I would feel about becoming a single mum, I would have told you, “I couldn’t do it. There’s no way I could cope with autism on my own”. 

Well here I am. 

I parent a child with autism. I’m not perfect, but I do it. I get up every day, and give it a shot. I even enjoy it! Somebody said once, that you don’t have to be the perfect parent; you just have to show up. That’s very true. And even though I often mess up, I always do show up. 

I leaned how to advocate and fight for his needs. It didn’t happen overnight, it was a process. And I’ve made mistakes. I’ll no doubt make more… but I do it. I listen to people around me. I watch. I figure things out and gather information. I’ve taken officials to tribunal and written letters to MP’s. I’ve connected SEN parents with one another. I information share, arrange meet ups. I network. There’s power in numbers. And knowledge is power. I would never have thought I could do any of these things. But here I am. 

Now… the single mum thing. It turns out that 2017 is the year of dizzying change for me. I’m about to embark on my first ever solo adventure. Just me and the kids. I’m going to have my own house, my own bills, my own rules, my own company. And I’ll be looking after two very small, vulnerable people. 

To be honest, I’m used to shouting for help if the Pickle is having a meltdown. Or he won’t stop sensory seeking and I need some time out. Or when my younger daughter is screaming at me and hanging off my clothes, and I’ve reached the end of my patience! It’s going to be a new and probably lonely experience dealing with this stuff alone. I’m used to having company, someone who’s coming home at the end of the day to fall back on. Someone to tell all my crazy stories to. 

Although I spent a LOT of time doing things for the Pickle, I’ve become lazy with certain things. It kills me to admit it… but over recent years, we’ve grown apart. 

I’m there for all his appointments, I dress him, feed him, bath him, look after him when he’s ill, make sure he’s warm, comfortable, happy etc… but the human moments. The closeness…. Let me explain.

I spent 9 months carrying him, feeling him kick, hiccup, turn around in my belly. Then when he was born, I spent every single waking hour with him. Feeding, cuddling, snoozing, and loving him fiercely. We were inseparable. I felt like I was the first person to ever have a baby! He was my complete world. I idolised him. 

But then things changed, and it happened so quickly I didn’t even realise. Between the ages of 2-4, the fuzzy, warm happiness had changed to concern, worry and fear. Second guessing all the time why he was so behind, trying to get somebody to listen and help us. He received his diagnosis age 3. He was becoming more difficult to handle and we hadn’t yet learned the skills / techniques to cope. It was a difficult time. Add in my own personal struggles with the permenance of our new future, and then add in 2 rounds of IVF, a house move and a new baby. 

Me and Pickle accidentally became distant. Daddy P would often take him out, they would do things together at the weekends, and I would stay home and take care of the baby. I felt exhausted. I was stressed. I was happy to have the responsibility lifted for a while. 

Soon habits and routines were formed, which meant that things between us, never quite got back to how they were. And I knew that it would never ever really would be the same. Life had changed. The Pickle and I did lots of lovely things, and we still spent time together, but usually as a family. The one to one time with always with Daddy. We would still occasionally get those moments together, it was just much less. When we did share a moment, my heart would burst, and I would cuddle him tightly, realising how much I missed him. But then we would fall back into routine. Me with the baby, Daddy P with the Pickle.  

I know it’s going to be challenging being alone, but there’s a real opportunity in this. Being alone will force me to stop being lazy. We will get that time together again.

I know things will be far from perfect, and some days I’m going to tear my hair out. I’ll make a ton of mistakes. And he is going to drive me mad. But he’s my first born child, and he needs me. And I really need him. I want to get that closeness back. I miss him so much. 

Like everything else that I have done in my life, that I honestly though I couldn’t do; I’m going to do this too. And I know I can do this, because I believe in myself, and I believe in him. We’ve got this. 

I’ve got this. 

Under Lock & Key

I am not a fan of the system that’s responsible for my son’s care and education. It’s complex. It’s running on empty. It’s on its knees. There’s no money. Provision is scarce. There’s not enough practitioners, too many children. Stretched, underfunded, at breaking point. 

There are so many good people who work for the NHS, for the local authority, for social care, and even for the government. I respect anybody who goes into a role wanting to help others and build towards a better future, but it’s not working the way it should be. The system is broken. 

Like all other parents of children with special needs, I have had to learn to fight for my son. I’ve learned to speak up when something doesn’t feel right. To question everything I am told. To challenge authority. To not always take no for an answer. I have researched, gone on courses, and learned basic law. I have had to take my son’s therapy into my own hands and force or pay out for a way for him to access what he needs. 

That is not right. When a parent finds out their child has a disability, the biggest challenge that parent SHOULD be facing, is dealing with their child’s additional needs. The biggest challenge SHOULD NOT be dealing with a system that will do EVERYTHING that it can, to AVOID giving your child the support and intervention they need, because the money and the provision just isn’t there. 

I’m not talking about the ‘rolls royce’ of provision, simply accessing the most basic support and therapies to ensure a child can thrive and grow up to reach their potential. 

Every child should be given that opportunity. 

This was making me angry enough… but then I saw the Dispatches documentary last week ‘Under Lock and Key’. And during that hour, I realised with utter horror, the true nature of what ‘could’ lie ahead for my son with the system that’s designed to help him. 

You can watch the documentary here

Three teenagers / young adults, two with autism, all with learning disabilities, complex needs and challenging behaviour. They were sent to the hospital ‘St Andrews’ in Northampton. 

These young people were admitted to the hospital via the NHS which describes itself as “The UK’s leading charity, providing specialist NHS care”.  

Their parents believed and trusted that their children were going to be looked after. That they would be given the specialist support and therapy they needed, by staff who understood their conditions and complex needs. 

What each of these young people experienced is the stuff of nightmares. They were physically restrained on regular occasions, denied food, over medicated to keep them ‘under control’, kept in isolation for long periods of time with just the screams of other patients in the next room to listen to, (one 15 year old girl was kept on her own, in a ‘cell’ for nearly 2 years with no socialisation). Outdated and dangerous forms of restraint were used regularly, which can cause death by suffocation. Their disabilities were overlooked and the resulting behaviours were punished instead of being worked through.  

Every visit, the parents would watch helplessly as their child withdrew, lost weight, and fell apart in front of their eyes. One young man would often go into lockdown, unable to speak and paralysed with anxiety. Yet the parents had no power, no authority to get their child out of this place. They were ‘stuck’ in the system, with not enough suitable alternatives in other smaller and more suitable care facilities. These parents were absolutely terrified for the safety of their children. One believed that her child was going to die. 

Remember, these teenagers did not do anything wrong. They didn’t commit a crime, they aren’t outlaws. They are young adults with complex needs that need help and support. 

By St Andrews own admission, many of their patients had the potential to progress in the outside world with the correct support; however under St Andrew’s care, they were treated like animals. Like a problem of society. Like something to be hidden. It wasn’t therapy, it was containment. Containment of people considered to be less important, less human, then others without disabilities and complex needs. 

Through the battle of their parents and their MP’s, two of these young people have now been transferred. They are enjoying a happier life in their new placements, getting amazing therapy from kind, warm hearted people, and have begun a journey towards a happier and more fulfilling life. Respected and celebrated for who they are. Given methods to enable them to cope in their environment and develop self esteem & confidence. 

They no longer ‘need’ to be restrained, they no longer ‘need’ to be medicated via intermuscular injection every single day until they are zombies. They are doing really well. 

The other young man, he never made it out of St Andrews. He died a sad, undignified and painful death, after staff failed to recognise that he was suffering from extreme constipation; a common side effect from a medication they had prescribed to him. They didn’t call an ambulance for 4 hours. Even when he was vomiting his own excrement. 

After a botched and biased first inquest, the second inquest revealed that there had been 3 other similar deaths to this man, on the same ward, within 7 months of each other.

It is a complete and utter scandal. 

This is a system that should be taking care of vulnerable people. I hope to god that it never happens, but one day, my son may need intervention that I cannot provide. and if this happens, is this what is waiting for him? The very thought of him being alone, terrified, roughly handled and treated like an animal is enough to absolutely devastate me as a mother. I can’t even fathom it. It would kill me. And yet, there are parents, like me, who are right now, living through this nightmare, unable to help their child. 

I am devastated that this is what our society comes down too. I am terrified for the already unpredictable future of my son. If I can’t trust the people who are supposed to help him, where is there to go from this? What do I do? 

The fear is real and it’s crippling. And I want to stop this, I want to invoke change, but I don’t know how. I am so angry, but I don’t know how to change things. 

For the first time as a mother, I genuinely fear for my child’s future; not because of his disability, but because of the system that is designed to take care of him. 

And that is a truly unbelievable and terrifying situation. 

Anxiety and me

Anxiety. A word I use a lot. I come from a family that was consumed in it. I grew up in a house where anxiety and tension was an everyday way of life. So it’s no surprise really that I suffer from it! 

I never saw it when I was growing up. I thought it was normal behaviour. Normal feelings. When others reflected their anxieties on to me, I felt that I was to blame for it. That I was creating stress for everyone around me. 

The social anxiety I felt was crippling. I wanted so much to be liked, popular and happy. I was picked on at school because I was small, and I did whatever I felt I needed to do to try and get people to like me. 

In my teens, I started drinking alcohol to help me feel confident. Then I would throw up and get horrible hangovers, which would set the anxiety off all over again. To cut a long story short, I drank, smoked and partied my way hard through my teens and twenties, getting into unhealthy relationships, creating drama, covering up the way I felt, never really feeling like I was living. I was chasing something that I didn’t understand. I buried it, ignored it, exploded in rages and felt sad a lot of the time without ever really knowing why. Then I met Daddy P who probably saved my ass in the nick of time before I completely self destructed. 

Fast forward to my thirties, and I’ve developed that natural, calmer temperament that comes with the next decade of life. I’m still getting anxiety, but the volume is turned down. Along comes the Pickle! My beautiful, perfect little boy. He’s cute and clever with an amazing smile. He’s cheeky and funny and sweet. I feel like I’ve finally achieved something amazing with my life and I plan all the things we’re going to do together, all the things he’s going to grow up to be, and how I want to bring him up. 

When his development started to slow down, I knew. I knew something wasn’t right. I didn’t know what, and I didn’t want to believe it, but I knew. 

I spoke up, I asked everyone I met what they thought. I watched other children. I looked for reasons and excuses. I asked health visitors, nurseries, SENCO’s, parents, family, everybody for their opinions. And they all said that he was fine. The day I typed ‘autism in toddlers’ into google and read what came up, the penny finally dropped; and my world as I knew it fell apart. I was standing outside my local library on the phone to Daddy P, ugly tears running down my red cheeks telling him over and over, “he’s got autism. I don’t know what to do.” Daddy P told me not to worry, he probably doesn’t have autism. 

But I knew. 

My anxiety changed that day in many ways. For better and for worse. 

It became worse because it became chronic! I was constantly on edge, worrying, analysing, overthinking. The Pickle couldn’t take part in the usual toddler groups in the same way as the other kids and would get overstimulated, stim like crazy, make noises and lie down on the ground in the middle of all the action wth kids running around him, and not get up. It was hard. I tried to manage it, but I felt there were so many eyes on us, judging me, judging him. Even though everyone was really nice about it, I felt we were different. It was isolating. 

My anxiety really peaked once the Pickle was on the move and out of the buggy. My god he is fast! And he runs, without warning, and doesn’t stop or turn around to his name. I started to have panic attacks. I wouldn’t be able to speak. My ears would ring. I couldn’t formulate my thoughts, I couldn’t breathe. My clothes were too tight. I would be sick. 

I started to avoid going to ‘normal things’ simply because it was too busy, or there wasn’t a fence, or because there were blind spots where I couldn’t see him. I was so scared of losing him, of him running into danger. I would wake up in the night in a sweat after having dreams of him going missing, trying to explain in a panic to faceless people that he can’t tell anyone his name or ask for help, or even realise that he’s lost

One day, I took Pickle to the park, turned my back for all of a second, and he bolted out of the gate, and ran straight for the busy road towards our car. I screamed blue murder at him to stop. I left my daughter in her pram and ran as fast as I could with my hands stretched out desperately for him, but he was out of my reach. I saw the two cars coming in opposite directions down the road in slow motion, and watched him run straight out in front of them. Then I couldn’t see him. Both cars hit the brakes, they screeched to a halt. The noise was awful. I still couldn’t see him. I thought he had been hit. 

I ran out into the road and he was just standing there by the car door with a huge grin on his face thinking how exciting it all was. There were people running over to me, telling me to breathe, that he was ok and there was nothing I could have done. All I could say was “I’m sorry, I’m so sorry. He doesn’t understand”. 

After that horrible day, my anxiety got control of me and I started to avoid taking him out. By now, he’s an expert at gate opening, button pressing and getting away from me. So I gave up. I stopped doing it. Now we spend all our free time at home, and the only time I do take both him and my daughter anywhere, is when it’s an organised event FOR special needs children. He doesn’t get to do the normal things. And it’s not because he’s autistic, it’s because of my anxiety. 

It all sounds very hopeless but remember there was a good part to tell? Well, when I started getting the panic attacks, I realised for the first time in my life that these feelings perhaps weren’t something I should be putting up with. I started to look back in my life, and I started to piece it all together. The patterns of anxiety. The background that I had come from. I started to become more self aware, and less hard on myself. And I decided to get some help. 

So I went to visit the doctor and tried a few different things. I had CBT therapy, went to group sessions (which was as horrendous as it sounds!) I did some old fashioned counselling, and through that, I started to realise how deeply my son’s diagnosis had affected me. I take anti anxiety medication every morning. I’m not ashamed of it. 

And from all of this, comes a slow but steady process of healing. I know now when I’m anxious, or when I can feel a panic attack coming on, and seeing it for what it is gives me the ability to be able to deal with it and not get caught up in the drama of it. It’s never going to disappear completely, but I have good periods and difficult periods. When I’m having a difficult period, I feel strong enough to say to people around me “my anxiety might be bad today, I’ll be fine but bear with me if I’m a little short or if I disappear for a while”. 

I’m determined to get myself into a place where I can take both my children out again without fear. Or at least be able to cope with it and rationalise, so that they don’t miss out on the things that all children should have. I lived through that when I was growing up. I’m not going to pass on the same worries and fears to my children. 

Since becoming an autism mum, it’s allowed me to realise the extent of my anxiety, and by starting to talk about it, I’ve discovered how many people around me have similar feelings, and similar stories. It’s empowering and freeing to be able to talk honestly and openly about this. And I think we should all do it. Mental health is still something we shy away from and is sadly still stigmatised when it’s something that affects each and every one of us and we all need to take care of ourselves. 

When days seem hard, and you’re feelig sick and overwhelmed, please remember to be gentle on yourself. You’re doing the best you can with the tools you have. You are, and always will be, enough.

No way out

In my last post, I talked about how important it is to take time for yourself. To recharge your batteries and do something that’s just for you. 

This post still honours that concept, but it deals with the harsh reality that sits alongside. The reality that is set and cannot ever be changed. And it’s how I’m feeling right now. 

I am a prisoner. I am trapped in my own ridiculous tragedy, and I can’t change the channel. There is no plan B. There’s no getaway. No escape. 

When I became pregnant with Pickle, all my adolescent dreams had come true. I had the husband, the house and a baby on the way, which would complete the family I had always craved. I wanted to be loved, needed and happy. Finally, it was all coming together. 

We all know what happens next, it probably it happened to you too. Autism knocked at the door and let itself in, and now it is a massive part of my life and it will never ever leave. It stamped it’s way into my silly, perfect, little dream, and it shit all over it. 

Love my son, hate the autism. Love my Pickle when he’s calm, cuddling me, when he’s sleeping, when he’s at school… but it’s the day to day bullshit that’s wearing me down. It’s the sensory seeking. The constant movement. Running back and forth, climbing, jumping, hand biting, flapping, spinning, nervous energy. The constant tuneless, morbid noises. The destruction of everything around him. It’s the repetitive light switches being flicked on and off and on and off. The bumping into me and stamping on my feet whenever he comes near. Climbing all over me. Elbows in my stomach. Yanking my earrings out of my earlobes. The hair pulling, the hanging off me, climbing on the dog, the screaming, the door slamming over and over and over. The manic giggling when he’s told to stop and the complete lack of giving a shit about anything I ask him to do. 

It’s having to let him open and run through a door first. Every. Single. Time. It’s him figuring out he can open the car door by winding down the window, leaning out of it and opening it from the outside whilst I’m driving. It’s him running out of the front door into the road whenever I’m trying to get his sisters shoes on. It’s the spitting, the frustration, the impulsiveness. The fact that he’s tall enough to reach ALL the surfaces and cupboards now. Add in that he’s old enough to problem solve when he can’t get something, and grabs a chair or something random like my glasses to stand on. It’s the rough playing with his sister. Squeezing her. Pushing her. Leaning on her, squashing her head, taking her things, opening the stair gates to let her through to see if she falls down the stairs. It’s the instant sensory overload whenever she starts to cry and needs me in that moment and yet I have to deal with him first. 

It’s the every day stuff that is on repeat. Groundhog day. The same thing over and over and over, with little changes here and there, but no let up. No holidays. No weekends, no lie in, no peace. 

I. Am. Fucking. Exhausted. 

I do love my child but it’s hard. He has his quiet moments, he’ll sit on his iPad or play on his marble run, but it’s short lived. And I’m always waiting for the moment when I hear the heavy footsteps go BUMP and start thundering across the ceiling to tell me he’s on his way down. Desperately attempting to self regulate his underactive sensory system, trying to fill it with whatever input he can. In whatever way he can. With absolutely no concept of how his actions might hurt or affect everyone else who is unfortunate enough to live in this house. 

This is day to day life with autism. Yes my son is clever. He is sweet, he is funny, and he loves his family. But he is so difficult to live with. And as a parent, I feel utterly out of control when I hear those footsteps, and my heart often sinks. Another thing that I forgot to mention that drives me crazy is the constant sound of my own voice shouting at him to stop! Be nice! Don’t hurt! Stop stop stop bloody STOP! Then there’s the self loathing that comes with the fact that I’m shouting and hating on a 5 year old boy. 

I didn’t expect this. It was not part of the plan. But there’s no resignation letter. There’s no opt out. I am literally trapped in this chaos, without the knowledge that he’ll ever be able to leave home and lead his own life. This is my forever. 

Temporary breaks and time away are so important, and are so necessary, but that’s all they are. Temporary. 

I wish I could feel free. I wish things were different. 

I love my son. 

I hate the autism. 

Mummy Guilt

I’m surrounded by amazing mums. They are some of the most brilliant, funniest, bravest people I know. When it comes to caring for their child, they are like soldiers. They spend time searching the internet, reading books, attending talks and speaking to others around them to find any method they haven’t already found that might help their child. Any way that they can change or improve what they’re already doing. They spend hours with their child, trying to find the methods that work. They work tirelessly every single day, to help their son or daughter connect with the world around them; and then they tell me that they feel like they’re not doing enough.

This is what I call the mummy guilt.

Mummy guilt gives us a good old battering on a daily basis. It tells us that we are not good enough. That we should be doing more. It makes us doubt, causes us to worry and makes us scared of our responsibilities. It tells us that we’re not doing our job properly, and it tells us to do better. It keeps us up at night worrying over the things we didn’t get right that day, and berates us for the times we completely messed it up. 

The 7am Meltdown

You probably know it, you’ve been there. The first wake up call was around 5am, the Pickle wandered in to announce his day had started, but this was one of the mornings he went back to his bedroom. Thank goodness I thought, I can sleep again. At 7am, the meltdown began.

I’m not too sure exactly how it started, I think he knocked over his marble run. And then we couldn’t get it right. Then nothing was right, and it felt like nothing would ever be right again as the screams of a crazed banshee ran out through our house whilst two bleary eyed, tired parents tried to fix the situation; knowing full well that we could never fix the situation.