Category Archives: Anxiety

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.