Category Archives: Developmental Delay

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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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. 

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. 

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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F**K OFF AUTISM!!

Warning to any readers of a sensitive disposition – multiple uses of the F word have been used in this blog…. and they may be used again. And again.

So yesterday, another difficult day in Pickle-land. I got the Pickle into bed after he had been trying his hardest to climb into the toilet for the past hour. He thought it was absolutely hilarious and was giggling his head off. Beautiful, twinkling child music that went on and on and on. My husband popped his head around the door and said to me “he really does have the most wonderful laugh”.

And I nodded slowly and agreed. Because it is very beautiful. But I wasn’t laughing. I didn’t have the energy. I just wanted to get the Pickle to bed. I wished he’d stop laughing and just get in the bath.

Afterwards, my husband had taken the dog to puppy training classes and I ran myself a bath (I didn’t try to climb into the toilet like the Pickle…) and as the water was running, I thought how sad it was that I hadn’t been at all charmed or endeared by the Pickle getting the giggles. And at that moment, with total clarity, my mind just went “Autism…. I wish you would just FUCK OFF”

Just. Fuck. Off.

Autism, take your inflexible, rigid, stupid little arse and go run off a very high cliff. and whilst we’re talking….

– Fuck you for taking away the joy of my son giggling.
– Fuck you for leaving my son unable to communicate his needs
– Fuck you for forcing me to change the way I parent my child
– Fuck you for making me feel so frustrated with a small, defenceless little boy, when it’s YOU I hate
– Fuck you for leaving him unable to form friendships and bonds with other children
– Fuck you for making my family have to fight for funding, support and therapy
– Fuck you for making me feel utterly alone with my child in a room full of mums
– Fuck you for making my son meltdown and hit me because he doesn’t know what else to do
– Fuck you for creating a future where nobody can tell me how he will be or who he may become
– Fuck you for making me so frustrated with others who don’t understand, even though they have no reason or need to understand!
– Fuck you for taking away all the age-appropriate playgroups and activities that I would love to take my son to.
– Fuck you for making us different
– Fuck you for making our lives a very un-funny version of ‘groundhog day’
– Fuck you for stopping my son understanding that he’s about to become a big brother
– Fuck you for making me scared about having another baby instead of joyful because I cannot work out how she will fit in around YOU!
– Fuck you for making me feel depressed, anxious and giving me panic attacks
– Fuck you for the total finality of it all. Nothing I can do or say, will ever make you fuck off. You are here in our lives forever. Living among us. Always. And I don’t remember inviting you.

Autism, quite frankly, today you can kiss my arse. You have taken away so much joy, laughter and happiness that I should have had with my little boy. I love him so damn much and you have stolen our early years together. You have changed our relationship from what it should have been to what it is. You have made me change all goalposts and expectations, and whilst most days I can totally accept that and get on with life, today I fucking hate you and I want you to know it.

So yeah…. why don’t you just fuck off autism. And whilst you’re at it, give me my little boy the life back that he should be living. You utter twat.

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