Category Archives: Support

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

Under Lock & Key

I am not a fan of the system that’s responsible for my son’s care and education. It’s complex. It’s running on empty. It’s on its knees. There’s no money. Provision is scarce. There’s not enough practitioners, too many children. Stretched, underfunded, at breaking point. 

There are so many good people who work for the NHS, for the local authority, for social care, and even for the government. I respect anybody who goes into a role wanting to help others and build towards a better future, but it’s not working the way it should be. The system is broken. 

Like all other parents of children with special needs, I have had to learn to fight for my son. I’ve learned to speak up when something doesn’t feel right. To question everything I am told. To challenge authority. To not always take no for an answer. I have researched, gone on courses, and learned basic law. I have had to take my son’s therapy into my own hands and force or pay out for a way for him to access what he needs. 

That is not right. When a parent finds out their child has a disability, the biggest challenge that parent SHOULD be facing, is dealing with their child’s additional needs. The biggest challenge SHOULD NOT be dealing with a system that will do EVERYTHING that it can, to AVOID giving your child the support and intervention they need, because the money and the provision just isn’t there. 

I’m not talking about the ‘rolls royce’ of provision, simply accessing the most basic support and therapies to ensure a child can thrive and grow up to reach their potential. 

Every child should be given that opportunity. 

This was making me angry enough… but then I saw the Dispatches documentary last week ‘Under Lock and Key’. And during that hour, I realised with utter horror, the true nature of what ‘could’ lie ahead for my son with the system that’s designed to help him. 

You can watch the documentary here

Three teenagers / young adults, two with autism, all with learning disabilities, complex needs and challenging behaviour. They were sent to the hospital ‘St Andrews’ in Northampton. 

These young people were admitted to the hospital via the NHS which describes itself as “The UK’s leading charity, providing specialist NHS care”.  

Their parents believed and trusted that their children were going to be looked after. That they would be given the specialist support and therapy they needed, by staff who understood their conditions and complex needs. 

What each of these young people experienced is the stuff of nightmares. They were physically restrained on regular occasions, denied food, over medicated to keep them ‘under control’, kept in isolation for long periods of time with just the screams of other patients in the next room to listen to, (one 15 year old girl was kept on her own, in a ‘cell’ for nearly 2 years with no socialisation). Outdated and dangerous forms of restraint were used regularly, which can cause death by suffocation. Their disabilities were overlooked and the resulting behaviours were punished instead of being worked through.  

Every visit, the parents would watch helplessly as their child withdrew, lost weight, and fell apart in front of their eyes. One young man would often go into lockdown, unable to speak and paralysed with anxiety. Yet the parents had no power, no authority to get their child out of this place. They were ‘stuck’ in the system, with not enough suitable alternatives in other smaller and more suitable care facilities. These parents were absolutely terrified for the safety of their children. One believed that her child was going to die. 

Remember, these teenagers did not do anything wrong. They didn’t commit a crime, they aren’t outlaws. They are young adults with complex needs that need help and support. 

By St Andrews own admission, many of their patients had the potential to progress in the outside world with the correct support; however under St Andrew’s care, they were treated like animals. Like a problem of society. Like something to be hidden. It wasn’t therapy, it was containment. Containment of people considered to be less important, less human, then others without disabilities and complex needs. 

Through the battle of their parents and their MP’s, two of these young people have now been transferred. They are enjoying a happier life in their new placements, getting amazing therapy from kind, warm hearted people, and have begun a journey towards a happier and more fulfilling life. Respected and celebrated for who they are. Given methods to enable them to cope in their environment and develop self esteem & confidence. 

They no longer ‘need’ to be restrained, they no longer ‘need’ to be medicated via intermuscular injection every single day until they are zombies. They are doing really well. 

The other young man, he never made it out of St Andrews. He died a sad, undignified and painful death, after staff failed to recognise that he was suffering from extreme constipation; a common side effect from a medication they had prescribed to him. They didn’t call an ambulance for 4 hours. Even when he was vomiting his own excrement. 

After a botched and biased first inquest, the second inquest revealed that there had been 3 other similar deaths to this man, on the same ward, within 7 months of each other.

It is a complete and utter scandal. 

This is a system that should be taking care of vulnerable people. I hope to god that it never happens, but one day, my son may need intervention that I cannot provide. and if this happens, is this what is waiting for him? The very thought of him being alone, terrified, roughly handled and treated like an animal is enough to absolutely devastate me as a mother. I can’t even fathom it. It would kill me. And yet, there are parents, like me, who are right now, living through this nightmare, unable to help their child. 

I am devastated that this is what our society comes down too. I am terrified for the already unpredictable future of my son. If I can’t trust the people who are supposed to help him, where is there to go from this? What do I do? 

The fear is real and it’s crippling. And I want to stop this, I want to invoke change, but I don’t know how. I am so angry, but I don’t know how to change things. 

For the first time as a mother, I genuinely fear for my child’s future; not because of his disability, but because of the system that is designed to take care of him. 

And that is a truly unbelievable and terrifying situation. 

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

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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