Category Archives: Burnout

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. 

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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.

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. 

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F**K OFF AUTISM!!

Warning to any readers of a sensitive disposition – multiple uses of the F word have been used in this blog…. and they may be used again. And again.

So yesterday, another difficult day in Pickle-land. I got the Pickle into bed after he had been trying his hardest to climb into the toilet for the past hour. He thought it was absolutely hilarious and was giggling his head off. Beautiful, twinkling child music that went on and on and on. My husband popped his head around the door and said to me “he really does have the most wonderful laugh”.

And I nodded slowly and agreed. Because it is very beautiful. But I wasn’t laughing. I didn’t have the energy. I just wanted to get the Pickle to bed. I wished he’d stop laughing and just get in the bath.

Afterwards, my husband had taken the dog to puppy training classes and I ran myself a bath (I didn’t try to climb into the toilet like the Pickle…) and as the water was running, I thought how sad it was that I hadn’t been at all charmed or endeared by the Pickle getting the giggles. And at that moment, with total clarity, my mind just went “Autism…. I wish you would just FUCK OFF”

Just. Fuck. Off.

Autism, take your inflexible, rigid, stupid little arse and go run off a very high cliff. and whilst we’re talking….

– Fuck you for taking away the joy of my son giggling.
– Fuck you for leaving my son unable to communicate his needs
– Fuck you for forcing me to change the way I parent my child
– Fuck you for making me feel so frustrated with a small, defenceless little boy, when it’s YOU I hate
– Fuck you for leaving him unable to form friendships and bonds with other children
– Fuck you for making my family have to fight for funding, support and therapy
– Fuck you for making me feel utterly alone with my child in a room full of mums
– Fuck you for making my son meltdown and hit me because he doesn’t know what else to do
– Fuck you for creating a future where nobody can tell me how he will be or who he may become
– Fuck you for making me so frustrated with others who don’t understand, even though they have no reason or need to understand!
– Fuck you for taking away all the age-appropriate playgroups and activities that I would love to take my son to.
– Fuck you for making us different
– Fuck you for making our lives a very un-funny version of ‘groundhog day’
– Fuck you for stopping my son understanding that he’s about to become a big brother
– Fuck you for making me scared about having another baby instead of joyful because I cannot work out how she will fit in around YOU!
– Fuck you for making me feel depressed, anxious and giving me panic attacks
– Fuck you for the total finality of it all. Nothing I can do or say, will ever make you fuck off. You are here in our lives forever. Living among us. Always. And I don’t remember inviting you.

Autism, quite frankly, today you can kiss my arse. You have taken away so much joy, laughter and happiness that I should have had with my little boy. I love him so damn much and you have stolen our early years together. You have changed our relationship from what it should have been to what it is. You have made me change all goalposts and expectations, and whilst most days I can totally accept that and get on with life, today I fucking hate you and I want you to know it.

So yeah…. why don’t you just fuck off autism. And whilst you’re at it, give me my little boy the life back that he should be living. You utter twat.

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I’ve hit BURNOUT!

I’ve been meaning to blog for a while. I’ve had lots of ideas for posts, but I just haven’t found the energy.

Today I’m making myself sit down and write one. And the only thing I can think about is how exhausted I feel. So I’m going to write a bit about that. And tell you some things about me. If I can stay focused long enough!

I haven’t mentioned it up until now but the Pickle is about to become a big brother! I’m 8 months pregnant. It’s been a long and emotional road. It’s taken a lot of patience, frustration and 2 rounds of IVF to get here. I never saw that little curveball coming either! We’d never had any problems making Pickle. Last year I had to put my body through a lot. I learned to give myself twice daily injections, I had to inject drugs that made me feel a bit crazy (my long suffering husband got shouted at a lot), I had to go under anesthetic on a number of occasions and had to go through some fairly unpleasant procedures. But we got there. And we’re having a little girl. And we’re thrilled. I know more than anyone how hard it is when you can’t have what you desperately want, and so I am very blessed and thankful for the position that we’re in.

Also, we recently bought a puppy for the Pickle. She’s a labrador crossed with a Newfoundland. And they’re massive dogs! So we’ve basically got a huge puppy with beautiful eyes, webbed feet and a naughty temperament. She is beautiful. She’s been really good for the Pickle (although she thinks he’s a puppy too!!). The Pickle loves her too. He says her name randomly in the car when I pick him up from nursery so I know that he’s thinking about her and he looks forward to seeing her. They play games together. He throws things for her and she runs after them. She doesn’t bombard him with words and questions and she has unconditional love and interest for him. She’s really helping him.

We knew when we bought the puppy that the timing was terrible for us! I was 4 months pregnant and dogs are hard work! Both my husband and I both had dogs growing up and we understand the level of commitment and work that a canine family member requires; especially when they’re playful, naughty puppies. I have spent the last 4 months cleaning up more poo and wee than I ever thought possible. There are rough patches on my knees from all the time I’ve spend kneeling on the kitchen floor! I have had to put so much mental energy into knowing where the dog is at all times, and always knowing where Pickle is at the same time! It’s been like looking after two babies who are in bigger bodies. Theyr’e both quite physically strong, neither of them listen to a word I say, sometimes it’s one being difficult, sometimes it’s the other, most often it is both, at the same time. Argh!!

Are they both playing well together? (not always!!) Is the puppy destroying something? (Pickle made some very rare artwork when he was 2 years old that always sat proudly on our fridge.. not anymore. The puppy got it). I literally cannot leave the puppy alone in a room for more than a minute! She is big enough already to jump up and get things on surfaces (no food on my kitchen is safe) and she chews everything she sees which is difficult as Pickle leaves toys everywhere. The Pickle likes to take everything from the puppy and has developed a habit of putting her toys in his mouth! (yuck) It’s been hard work. But worth it to see the Pickle bond with her. And when the baby comes, everything will change. But the puppy will still be Pickle’s friend. She won’t change. And I hope that will be a comfort for him during what will be a really challenging time of change for all of us.

Lots of people when they meet me ask if the Pickle is excited about the new baby. I’m pretty sure he has no idea whatsoever!! We’ve read a lovely ‘lift the flap’ book about mummy having a baby in her tummy and another one about being a big brother with buttons and noise, and the Pickle has learned the response when asked, ‘What’s in mummy’s tummy?’ he dutifully answer: “Baby!” but I don’t believe he has any real concept of what’s going on. So it’s really difficult to know how he’ll react, and it does worry me. But he always has the capacity to surprise me and I’m mostly remaining positive about it all 🙂

Whilst all this has been going on, we’ve also been organising the Pickles EHC plan for when he starts primary school in September. (eek!) That’s been hard work too. The other night, I received all the recent reports on Pickle made by his nursery, the Pre-school Specialist, the Educational Psycologist and his Speech & Language therapist. They were all lumped together, one report after the other. That was hard reading. It was 24 pages of all the bad stuff. About how ‘special needs’ my child actually is, how much help and support he’s going to need to do the basic things that all other kids do automatically, and what development level he is at. (It’s not nice reading that your 3 & a half year old is in some areas, the level of an 8 month old baby!)

When I read that report the other night, it made me sad. But something kind of snapped inside. I’ve been feeling so tired. I’m heavily pregnant, dealing with a crazy household where everybody constantly wants things from me but nobody listens to what I want them to do, I have a to-do list that never seems to get any smaller, getting out of the door, into the car and into town for something… actually, just walking up the bloody stairs feels exhausting! And I’ve been feeling like things are spiralling out of control whilst I try desperately to appear normal. I can’t remember dates, times, where I’m supposed to be or what somebody said to me five minutes ago. Everytime I put something down, I lose it. I’ve become that person who is always late or rearranging to meet up. I’m scared things won’t be ready for the baby and there’s so little time left to sort it out. But I don’t have the energy to sort the things that need sorting. I don’t know how the baby is going to fit into this crazy existance that is already so full to the brim of people needing me. I’m just keeping going…. keeping going…. keeping going….. then I read the report. And I felt sad. Then I went and looked at the Pickle asleep in bed, my little boy, And suddenly, something just snapped and I was so exhausted.

So yesterday afternoon, after screaming at the dog and the Pickle for playing too roughly and physically seperating them (which again makes me exhausted), I put the dog in the crate, and just went upstairs and put myself to bed in the middle of the afternoon. It was like I couldn’t do anything anymore. I was supposed to write a shopping list and make a chicken pie, but I couldn’t face it. Time suddenly stopped and my thoughts were fuzzy.

The Pickle thought it was a great game! He came and got into bed with me, got his nightime turtle and put it on, closed the curtains, took his trousers off, then started laughing and smacking me round the head because I was lying down being funny! At least he was where I could keep an eye on him, so I just lay there, and thought how I couldn’t do this anyomore. I thought about selling the dog. I felt like such a faliure because I clearly couldn’t cope and more than anything, I felt really scared about the future, and cursing myself for taking on too much, soon to be a new baby as well! I felt like such an idiot. A product of my own decisions, lying in bed at 4pm being hit round the head by my autistic toddler with a crazy puppy barking non-stop downstairs and a baby arriving in weeks, and it’s all been my decisions, and I’m not coping.

So that was yesterday, I’m still exhausted, but I’m feeling a bit happier today. But I realised that yesterday I totally burned out. I couldn’t keep going. I kind of knew it was coming, but I didn’t realise how exhausted I really was. And the difficult thing is there’s no easy solutions to fix it! The Pickle will still be the Pickle, the puppy will still be the puppy, the baby is coming soon no matter what! And I do feel like a total and utter flake and a faliure at the moment. But I’m happy for everything I have. I’m blessed with an amazing, funny, intelligent little boy, and beautiful puppy who always gives me love, even when I’ve just shouted at her, a husband who although he despairs of me most of the time, but will always love me, be there for me and try to help when he can, and there’s a beautiful new little baby who’s about to change our lives again forever and who we fought so hard to bring into our lives. When I allow myself too, I feel her kick and I smile for the love that’s about to overwhelm me all over again. So I guess things can’t be all bad.

And on that note, I’ve recently had this made… it represents my little family. The ‘husband’ heart is for my other half (obviously!) The autism heart is for the Pickle, the pink flower is for my unborn daughter, and the ying yang is for me!

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So yeah… that’s why the blog posts have been a bit non-existant lately! And I know this one is a bit all over the place. But it’s something at least and perhaps you’ve learned a little more about me. I hope you’re all doing ok with your own crazy lives, thanks for reading my blog so far and I hope you keep reading! It’s really nice to get everyones comments and I always read your updates too. Even if I’ve been too tired to reply lately 😉

I’m off to make that chicken pie now… x