Category Archives: Exhaustion

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. 

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. 

Continue reading

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. Continue reading

It’s time for the sun to shine!

Hello! Long time! To be honest, it’s been a real drag to sit down and write this post after the last few, but I think I’m ready now!

My last couple of posts came from such a sad, tired place. I’ve been struggling massively over the past six months, with the diagnosis, with family life and with pregnancy. And I’ve had such low energy levels that has made it difficult to move. I’ve been depressed. I’d stopped going out. I wasn’t seeing my friends. I didn’t want to go anywhere, do anything. I could barely crack a smile. I felt really lonely and isolated.

Things are a bit better now. I’ve been having some therapy for my anxiety problems which has helped me to evaluate a few things and get a better relationship with my husband, so I feel more supported; and towards the end of my pregnancy, I’ve also got a little bit more energy (amazingly!) which has made life more enjoyable. I’m feeling motivated. The puppy has stopped using the living room carpet to relieve herself, and has calmed down a lot. All of this stuff has helped massively.

And the Pickle… well he’s doing really well! He played his first game of ‘What’s the time Mr Wolf’ at nursery the other day! They showed me photos. He was standing confidently right in the middle of the photo holding hands with all the other children and smiling. He’s become really good at taking turns, and for the first time a couple of weeks ago, I said “I love you Pickle” and instead of repeating it back to me word for word, he said “I love you mummy”

The diagnosis was harder than I thought it would be. I felt it wouldn’t change anything as I had already figured out that he had autism and I thought having it written down on paper would just give him any extra support that he needed and would encourage others to take things more seriously when I explained his needs. But it has been like a giant rollercoaster. Good days, bad days, terrible days, selfish days, easy days, days that were good and then went bad at the last hour, days that felt they would never end. I never really knew what kind of day was coming. And it got on top of me. It really did. But I’m feeling stronger now.

So I took him out at the weekend, he really likes trains. So we took him on London Underground to a few places, and got the cable car from Emirates to the O2. Sounds like a normal thing to do with your child, tame almost. But it was a big deal for me as we’ve been hiding away for months and I get scared taking him out. But here we are! And here he is:

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Something that has really not helped with my anxiety over the past few months, is there have been a couple of incidents where we have been out on playdates or at softplay centres, and other children have gotten frustrated with him and have hurt him. (one scratched his face, the other pushed him and tried to strangle him!) He didn’t seem to mind too much… but it really upsets me. And it makes me really scared and angry. Other mums know their children will run up to them and tell them when something’s happened, but if I hadn’t suddenly got up to check and caught that child doing that to my son, I would never have known. How many things do I miss? I can’t be with him all the time when he’s playing. And all the other mums are “chat chat chatting” and drinking their coffee, knowing that their children will come and tell them if there’s a problem, whilst I’m trying to chat and drink coffee and appear normal, but my anxiety levels are steaming, not knowing if the Pickle is ok, if he’s stimming too much and bumping into other children, if he’s getting himself into a situation that he has no idea is even happening, let alone be able to deal with. Then he can’t even come and tell me afterwards.

He’s not ill, there’s nothing wrong with him, he’s got a different processing system to the rest of us. And he has to live in our world. It’s overwhelming, and confusing. He is the one that needs all the love, help and support he can get. He’s so small. He can’t help having autism. And I’m his mummy.

I promised him last week that no matter what, from now on, we will stick together. I won’t be absent anymore. I will be the Pickle’s spokesperson whilst he can’t speak for himself. I will back him all the way and be his voice. I will educate people around him about his differences and show them how clever he is and how far he has come.

I will tell every day him how special he is and how much I love him. Even more so when he is tired, angry and confused and being difficult to understand. I will always be a firm (but hopefully fair) mum because that is who I am, but ultimately, I want him to think of me as somebody he can go too when he needs help, advice or is simply overwhelmed and wants a familiar face. He can’t see me falling apart anymore, he just can’t. This is his life. It’s too important to waste.

And in a matter of days, he’ll suddenly have a new little sister in his life and everything will be thrown into a new type of chaos. But you know what, I think we’ll all be ok. Because we all going to stick together.

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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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