Tag Archives: help

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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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. 

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