Category Archives: support groups

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

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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Don’t listen to them…

There are a few things in life that bug the hell out of me. One of those things is a judgemental attitude (the bitchy kind) and the other one is when people talk a load of bullshit (bitchy or well intended).

I try to stay well away from anyone who makes me feel bad about myself or inadequate, I also keep a polite distance from those who are generally unhelpful. This is for both our benefit. When I was growing up and easily impressionable, I tolerated a lot of bullshit from a variety of different people who were either friends by default (in the group I was in) or were quite damaged individuals. I didn’t like being at home growing up so I would always tolerate the things that were said and done to me because that seemed as good as life was going to get at the time. Now I am an adult, I have a strong philosophy that if somebody is not good for me, I cut them out of my life. And I would expect exactly the same from other people. Life’s too short.

I realise that sounds harsh, and I am actually a very nice to know, loyal friend to have, but when you’ve had the experiences I have, and met some of the slightly unhinged people I’ve come across, you have to make certain changes to make sure that negativity stays out of your life! I’m talking about people who suck away your time and your energy. Emotional vampires. The people who do all the taking, and no giving. The ones who listen but don’t hear you. The ones who cannot see past their own agenda.

When the Pickle received his first diagnosis earlier this year of ‘Global Developmental Delay’ (GDD), it also fell at a time where he was getting past the point of fitting in with other mainstream children and activities we were expected to do at clubs and playgroups (everything was becoming about teamwork, instruction and taking turns) so after trying to power through with him doing normal things, and finding it harder and harder, I decided one day to put an SOS message out on my local mums Facebook page to see if anyone else was going through what I was with their child. I was sad and lonely. Nobody understood what was happening to the Pickle and me. Everyone just kept saying that the Pickle was fine and he would catch up and that their children did this too (usually followed by an example about their child that held little relevance to what I had just opened up about).

So anyway… I sent out an SOS. I was a bit terrified as it was the first time I had publicly declared to the world that my son had additional needs, but I was so miserable and judging by the NHS waiting list for the Pickles CDAC assessment (for autism) there MUST be others living locally out there too! Perhaps even feeling as miserable and isolated as I was. So where were they all?!

Two things happened from that post… Firstly, I slowly started to meet other mums including one that’s become a very good friend to me in a very short space of time. I found ladies who understood the frustration, the confusion, the sadness, the acceptance/denial, the frustrations with the NHS and the fears of sending their child to mainstream school in the same way I did. This really opened up a door for me and led to more connections with people, access to an additional needs playgroup and I finally felt validated and listened too when I spoke about the Pickle and understood by others. After a very long eighteen months, I slowly began to heal, smile, laugh and enjoy taking my son out again.

Secondly after writing that scary Facebook post, I gained the confidence to start looking for online support groups. There’s five that I have joined on Facebook, two for GDD (Global Developmental Delay) and three for ASD (autism spectrum disorder).

These groups are amazing as you can access support from a community of parents who have all been there. Questions no matter how big or small that you can’t find the answer too on your own can be posted and suddenly you have a wealth of experience from the people who experienced it a hundred times over and bought the t-shirt. I remember when the Pickle started having massive, major meltdowns and I found it very hard to cope with them. Anyone else would cheerfully tell me how their child would throw tantrums too and the Pickle was no different and not to worry (followed by a story), but any parent of an SN child knows it’s not the same. And I found the support and the help I needed to learn to cope with them through these groups. They’re great. I wouldn’t be without them…

BUT… The more groups I’ve joined, the more stories that come up on my newsfeed, and the more experience I’ve had, and the rose tinted glasses have come off and I’ve started to notice that even SN parents fall into two groups.

You get the supportive parents. The ones who don’t judge you for the things you tell them. The ones who will help you to find ways to cope when you admit that you’re not in a good place. The ones who will go out of their way to find you links, resources or put you in contact with people that will make your life easier. The ones who will gently talk you through something when perhaps you’re not seeing things as clearly as you should and you need a little guidance.

Then here comes the judgemental brigade! They bulldoze their way into your posts and they seem to be growing in number! These are the parents who when you say you wish that things were different, they jump on your post to say how they never feel that way, your child is a gift from God, you’re never given more than you can cope with, and that they NEVER feel the way that you do and nor should you. Because they all love their lives and their children. These unhelpful comments are always made on the most desperate posts by poor mums who really need a shoulder to cry on and a little understanding. Not judgement and imposed feelings of inadequacy by others because they’re not able to muster up these feelings of effortless strength. It’s self serving, self prophesied bullshit and it makes me angry seeing people pushing their own agendas to make themselves feel big, strong and important whilst making the mum who posted feel inadequate when they’re already at rock bottom. I’ve been there. It’s not a nice feeling.

We don’t ask to have children with additional needs, I don’t think any parent would choose this. Would you swap your child for one with autism? Of COURSE we love our children, we’re immensely proud of the steps and progress they make, we fight for them to the ends of the earth and we love them to the moon and back; but we all have very difficult days/weeks/months, especially in the early days when we’re still coming to terms with diagnosis’s and realisation of the lives that we did not ask for or expect. And when we’re feeling that depressed, the last thing that’s needed is a ‘know it all’ perfect parent who wants to tell you how amazing they are and how they never feel how you do. Perhaps this attitude is their way of coping and that works for them, and that’s fine! But don’t bring others down with it. It’s a horrible thing to do.

Also these judgemental parents will pick up on things you write in your posts and jump on you to tell you that your parenting your child incorrectly. This can include parenting methods (time outs, smacking, diet, TV watching etc, types of therapy you use for your child. You get the idea.) And these posts can get quite nasty. And you end up with two camps all liking their spokespersons comments and then admin have to step in and ask everyone to stop arguing and start being a supportive group whilst some poor mother who dared to post something looking for advice feels attacked, vilified and the subject of a witch hunt. It’s very uncomfortable to watch.

A few days ago, I saw a post that said “I have always treated my children the same, and my GDD child is doing really well, unlike my friend who also has a GDD child and she treats them differently to her other kids, and they’re years behind! Anyone else found this? ”

What a stupid woman. Right there, she has put down any other mother who is coping with a GDD child, who has to make adjustments or changes because of their delays and adjusted age. She has implied that if you treat your child differently to another child with a normal developmental age, your child will not thrive (unlike hers of course!) and she’s also not much of a friend to the other lady mentioned in the post if she’s saying mean and hurtful things about her children like that in such a flippant way. I wonder if people actually realise the damage that they can do.

So my point is that everywhere you go in life, even when you find places and people who can give you the help and support that you need, and you can help others, you will always ALWAYS get the ones who have their own agendas. The judgemental brigade. The dangerous ones. I feel so very very sad for the parents who can’t spot them a mile off and think there’s merit in the one sided ‘advice’ that they dish out on a poison spoon and feel bad about themselves as a result.

We are ALL brilliant parents. We are dealing with a huge curveball that life threw rudely at us and we never saw it coming. I am not afraid to say it. Sometimes it’s hard to be strong. Sometimes we feel depressed and sad and lonely and we wish things were different with our kids. Sometimes life sucks. There are many amazing moments, but there are also very sad ones too. And NOBODY has the right to tell you that your feelings are wrong or invalid. NOBODY is doing a better job than you are with their child. We are all on our own personal journey and in different places with it. If we could all just stick together and join ‘team supportive’ perhaps we could all achieve a lot more together, not just for our beautiful children, but for us as individuals, as mums, as carers, dieticians, therapists and spokespeople for our children. We are human and WE need support too.

Don’t ever settle for anybody giving you anything less.

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