Category Archives: Strength

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

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. 

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. 

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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