No way out

In my last post, I talked about how important it is to take time for yourself. To recharge your batteries and do something that’s just for you. 

This post still honours that concept, but it deals with the harsh reality that sits alongside. The reality that is set and cannot ever be changed. And it’s how I’m feeling right now. 

I am a prisoner. I am trapped in my own ridiculous tragedy, and I can’t change the channel. There is no plan B. There’s no getaway. No escape. 

When I became pregnant with Pickle, all my adolescent dreams had come true. I had the husband, the house and a baby on the way, which would complete the family I had always craved. I wanted to be loved, needed and happy. Finally, it was all coming together. 

We all know what happens next, it probably it happened to you too. Autism knocked at the door and let itself in, and now it is a massive part of my life and it will never ever leave. It stamped it’s way into my silly, perfect, little dream, and it shit all over it. 

Love my son, hate the autism. Love my Pickle when he’s calm, cuddling me, when he’s sleeping, when he’s at school… but it’s the day to day bullshit that’s wearing me down. It’s the sensory seeking. The constant movement. Running back and forth, climbing, jumping, hand biting, flapping, spinning, nervous energy. The constant tuneless, morbid noises. The destruction of everything around him. It’s the repetitive light switches being flicked on and off and on and off. The bumping into me and stamping on my feet whenever he comes near. Climbing all over me. Elbows in my stomach. Yanking my earrings out of my earlobes. The hair pulling, the hanging off me, climbing on the dog, the screaming, the door slamming over and over and over. The manic giggling when he’s told to stop and the complete lack of giving a shit about anything I ask him to do. 

It’s having to let him open and run through a door first. Every. Single. Time. It’s him figuring out he can open the car door by winding down the window, leaning out of it and opening it from the outside whilst I’m driving. It’s him running out of the front door into the road whenever I’m trying to get his sisters shoes on. It’s the spitting, the frustration, the impulsiveness. The fact that he’s tall enough to reach ALL the surfaces and cupboards now. Add in that he’s old enough to problem solve when he can’t get something, and grabs a chair or something random like my glasses to stand on. It’s the rough playing with his sister. Squeezing her. Pushing her. Leaning on her, squashing her head, taking her things, opening the stair gates to let her through to see if she falls down the stairs. It’s the instant sensory overload whenever she starts to cry and needs me in that moment and yet I have to deal with him first. 

It’s the every day stuff that is on repeat. Groundhog day. The same thing over and over and over, with little changes here and there, but no let up. No holidays. No weekends, no lie in, no peace. 

I. Am. Fucking. Exhausted. 

I do love my child but it’s hard. He has his quiet moments, he’ll sit on his iPad or play on his marble run, but it’s short lived. And I’m always waiting for the moment when I hear the heavy footsteps go BUMP and start thundering across the ceiling to tell me he’s on his way down. Desperately attempting to self regulate his underactive sensory system, trying to fill it with whatever input he can. In whatever way he can. With absolutely no concept of how his actions might hurt or affect everyone else who is unfortunate enough to live in this house. 

This is day to day life with autism. Yes my son is clever. He is sweet, he is funny, and he loves his family. But he is so difficult to live with. And as a parent, I feel utterly out of control when I hear those footsteps, and my heart often sinks. Another thing that I forgot to mention that drives me crazy is the constant sound of my own voice shouting at him to stop! Be nice! Don’t hurt! Stop stop stop bloody STOP! Then there’s the self loathing that comes with the fact that I’m shouting and hating on a 5 year old boy. 

I didn’t expect this. It was not part of the plan. But there’s no resignation letter. There’s no opt out. I am literally trapped in this chaos, without the knowledge that he’ll ever be able to leave home and lead his own life. This is my forever. 

Temporary breaks and time away are so important, and are so necessary, but that’s all they are. Temporary. 

I wish I could feel free. I wish things were different. 

I love my son. 

I hate the autism. 

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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Autistic? Or Naughty?

The Pickle is growing up. He’s a very handsome young man! I look at him sometimes and wonder how I managed to half create such a good looking little guy.

The older he gets however, it’s becoming MUCH harder…. it’s hard to control what’s going on and what he’s getting away with everyday. He’s getting so big now. (he’ll be 4 in July). It’s like having a little person with a very young mind, in an older child’s body. And I’m quite fat and pregnant at the moment.

On a bad day, he screams at me and hits me in the face when he’s frustrated. He fights me on the stairs (one day we will both fall down them for sure and how will anyone get in to save us? The house is locked up to stop the Pickle getting out!), he jumps on me (and my baby bump) with no idea that he can cause any harm, and the hardest one of all…. he does not listen to a word I say.

He doesn’t stop, wait, listen or eat when I tell him too. I can’t get him to sit at the table for more than 10 seconds. I have to bribe him with chocolate, biscuits and ipads and all the things you’re not supposed to give to your child when you want them to do something for you! Most days, I fell totally and utterly powerless in my own home. I’m redundant as a mother. Nothing I do makes any difference to what he’s doing. Add to that, a crazy puppy (who also doesn’t listen) and 8 month pregnancy exhaustion, I have been known to just burst into tears randomly and in front of the Pickle. Another terrible thing to do with he’s the child and I’m the adult. And perhaps it’s a good thing, but the Pickle can’t actually comprehend that either. Because he doesn’t understand that other people have feelings and emotions. He just looks at my snotty, red face in curiosity and will sometimes laugh or copy me.

Yesterday somebody said an innocent comment to me that I secretly took quite hard. We met for some lunch and she asked me if the Pickle was a good eater. I started to explain that he only eats dry food, usually bland colours, and that sometimes there were exceptions to the rules, but he hadn’t let a vegetable pass his lips in over a year and I was trying to fix that but it’s difficult to keep offering foods when you know it will be rejected and you’re just throwing money into the bin. She said with a smile ‘wow he’s really got one over on you hasn’t he?’ I laughed and said ‘yeah’.

But it totally hit a nerve, because I feel like he really HAS got one over on me. A 3 year old child that has total control over his 32 year old mother. A 3 year old that laughs in my face when I tell him off or try to stop him from destroying something. A 3 year old that never, ever, ever, EVER listens to me.

I find that really hard.

And I keep telling myself, it’s just his autism. It’s just his autism. He doesn’t understand. But I do wonder sometimes, his behaviour is getting worse. At what point, is it autism, and when is it naughty? How do I tell the difference? Are the two mixed in together sometimes? And shouldn’t I know as his mum when it’s down to social communication issues, or when he’s just being a 3 year old who doesn’t want to be told what to do?

He also seems to save up all the really challenging behaviours just for me. When I take him out, I can’t get him to sit anywhere for long (coffee meet ups are becoming a thing of the past) but he is generally very well behaved when he’s in public. I think he’s shy when he’s out. He barely speaks, he just holds my hand and walks to wherever I’m going, and when we get there, he’ll go find a door to open and close or a car to run back and forth for an hour until it’s time to go again. Then we’ll get home and he’ll become loud, stimmy, thumpy and door slammy. Or he’ll shout at me and I won’t be able to understand what he’s saying and it frustrates him even more and makes me sad.

At the weekend when my husband is around, I’ve been known to actually hide! I’ll lock myself in the bathroom or slip quietly off to the bedroom just to sit with my eyes closed for a while. I’ve been dealing with the Pickle’s challenging behaviour all week, and I take the occasional opportunity to run away from it sometimes. I probably shouldn’t…. but my husband does deal with him very well and he’s not as worn down as me. He gets to sit in an adult environment for 40+ hours a week dealing with a whole other type of high pressure. (again this doesn’t make hiding right, but it does mean I know his tolerance is higher than mine when I just need a break!).

And the humbling thing is that, I know that I’m lucky with the Pickle. Compared to some of the things I’ve read about, or seen for myself, he really isn’t that bad. He is a sweet natured little boy who doesn’t meltdown every day, or have any major behavioural issues with other children. If you can get past the door opening/closing obsession, the slamming, the fixations and the routines, he is very easy to get on with and to love. So if I’m finding his older preschool personality so difficult to cope with in the afternoons, how on earth do other parents cope with some of the things I hear about?! I take my hat off to all of you. You are all bloody amazing!

In the meantime, Pickle is going to preschool 4 mornings a week, and I can have some quiet time then to get on with things. Oh my goodness, I love my quiet time. Then it’s off to pick up the Pickle and start the afternoon hometime fun all over again! But is it autism? Or is it sometimes naughty?

And will I learn to tell the difference and be able to parent my son properly before it’s too late?

I’ve hit BURNOUT!

I’ve been meaning to blog for a while. I’ve had lots of ideas for posts, but I just haven’t found the energy.

Today I’m making myself sit down and write one. And the only thing I can think about is how exhausted I feel. So I’m going to write a bit about that. And tell you some things about me. If I can stay focused long enough!

I haven’t mentioned it up until now but the Pickle is about to become a big brother! I’m 8 months pregnant. It’s been a long and emotional road. It’s taken a lot of patience, frustration and 2 rounds of IVF to get here. I never saw that little curveball coming either! We’d never had any problems making Pickle. Last year I had to put my body through a lot. I learned to give myself twice daily injections, I had to inject drugs that made me feel a bit crazy (my long suffering husband got shouted at a lot), I had to go under anesthetic on a number of occasions and had to go through some fairly unpleasant procedures. But we got there. And we’re having a little girl. And we’re thrilled. I know more than anyone how hard it is when you can’t have what you desperately want, and so I am very blessed and thankful for the position that we’re in.

Also, we recently bought a puppy for the Pickle. She’s a labrador crossed with a Newfoundland. And they’re massive dogs! So we’ve basically got a huge puppy with beautiful eyes, webbed feet and a naughty temperament. She is beautiful. She’s been really good for the Pickle (although she thinks he’s a puppy too!!). The Pickle loves her too. He says her name randomly in the car when I pick him up from nursery so I know that he’s thinking about her and he looks forward to seeing her. They play games together. He throws things for her and she runs after them. She doesn’t bombard him with words and questions and she has unconditional love and interest for him. She’s really helping him.

We knew when we bought the puppy that the timing was terrible for us! I was 4 months pregnant and dogs are hard work! Both my husband and I both had dogs growing up and we understand the level of commitment and work that a canine family member requires; especially when they’re playful, naughty puppies. I have spent the last 4 months cleaning up more poo and wee than I ever thought possible. There are rough patches on my knees from all the time I’ve spend kneeling on the kitchen floor! I have had to put so much mental energy into knowing where the dog is at all times, and always knowing where Pickle is at the same time! It’s been like looking after two babies who are in bigger bodies. Theyr’e both quite physically strong, neither of them listen to a word I say, sometimes it’s one being difficult, sometimes it’s the other, most often it is both, at the same time. Argh!!

Are they both playing well together? (not always!!) Is the puppy destroying something? (Pickle made some very rare artwork when he was 2 years old that always sat proudly on our fridge.. not anymore. The puppy got it). I literally cannot leave the puppy alone in a room for more than a minute! She is big enough already to jump up and get things on surfaces (no food on my kitchen is safe) and she chews everything she sees which is difficult as Pickle leaves toys everywhere. The Pickle likes to take everything from the puppy and has developed a habit of putting her toys in his mouth! (yuck) It’s been hard work. But worth it to see the Pickle bond with her. And when the baby comes, everything will change. But the puppy will still be Pickle’s friend. She won’t change. And I hope that will be a comfort for him during what will be a really challenging time of change for all of us.

Lots of people when they meet me ask if the Pickle is excited about the new baby. I’m pretty sure he has no idea whatsoever!! We’ve read a lovely ‘lift the flap’ book about mummy having a baby in her tummy and another one about being a big brother with buttons and noise, and the Pickle has learned the response when asked, ‘What’s in mummy’s tummy?’ he dutifully answer: “Baby!” but I don’t believe he has any real concept of what’s going on. So it’s really difficult to know how he’ll react, and it does worry me. But he always has the capacity to surprise me and I’m mostly remaining positive about it all 🙂

Whilst all this has been going on, we’ve also been organising the Pickles EHC plan for when he starts primary school in September. (eek!) That’s been hard work too. The other night, I received all the recent reports on Pickle made by his nursery, the Pre-school Specialist, the Educational Psycologist and his Speech & Language therapist. They were all lumped together, one report after the other. That was hard reading. It was 24 pages of all the bad stuff. About how ‘special needs’ my child actually is, how much help and support he’s going to need to do the basic things that all other kids do automatically, and what development level he is at. (It’s not nice reading that your 3 & a half year old is in some areas, the level of an 8 month old baby!)

When I read that report the other night, it made me sad. But something kind of snapped inside. I’ve been feeling so tired. I’m heavily pregnant, dealing with a crazy household where everybody constantly wants things from me but nobody listens to what I want them to do, I have a to-do list that never seems to get any smaller, getting out of the door, into the car and into town for something… actually, just walking up the bloody stairs feels exhausting! And I’ve been feeling like things are spiralling out of control whilst I try desperately to appear normal. I can’t remember dates, times, where I’m supposed to be or what somebody said to me five minutes ago. Everytime I put something down, I lose it. I’ve become that person who is always late or rearranging to meet up. I’m scared things won’t be ready for the baby and there’s so little time left to sort it out. But I don’t have the energy to sort the things that need sorting. I don’t know how the baby is going to fit into this crazy existance that is already so full to the brim of people needing me. I’m just keeping going…. keeping going…. keeping going….. then I read the report. And I felt sad. Then I went and looked at the Pickle asleep in bed, my little boy, And suddenly, something just snapped and I was so exhausted.

So yesterday afternoon, after screaming at the dog and the Pickle for playing too roughly and physically seperating them (which again makes me exhausted), I put the dog in the crate, and just went upstairs and put myself to bed in the middle of the afternoon. It was like I couldn’t do anything anymore. I was supposed to write a shopping list and make a chicken pie, but I couldn’t face it. Time suddenly stopped and my thoughts were fuzzy.

The Pickle thought it was a great game! He came and got into bed with me, got his nightime turtle and put it on, closed the curtains, took his trousers off, then started laughing and smacking me round the head because I was lying down being funny! At least he was where I could keep an eye on him, so I just lay there, and thought how I couldn’t do this anyomore. I thought about selling the dog. I felt like such a faliure because I clearly couldn’t cope and more than anything, I felt really scared about the future, and cursing myself for taking on too much, soon to be a new baby as well! I felt like such an idiot. A product of my own decisions, lying in bed at 4pm being hit round the head by my autistic toddler with a crazy puppy barking non-stop downstairs and a baby arriving in weeks, and it’s all been my decisions, and I’m not coping.

So that was yesterday, I’m still exhausted, but I’m feeling a bit happier today. But I realised that yesterday I totally burned out. I couldn’t keep going. I kind of knew it was coming, but I didn’t realise how exhausted I really was. And the difficult thing is there’s no easy solutions to fix it! The Pickle will still be the Pickle, the puppy will still be the puppy, the baby is coming soon no matter what! And I do feel like a total and utter flake and a faliure at the moment. But I’m happy for everything I have. I’m blessed with an amazing, funny, intelligent little boy, and beautiful puppy who always gives me love, even when I’ve just shouted at her, a husband who although he despairs of me most of the time, but will always love me, be there for me and try to help when he can, and there’s a beautiful new little baby who’s about to change our lives again forever and who we fought so hard to bring into our lives. When I allow myself too, I feel her kick and I smile for the love that’s about to overwhelm me all over again. So I guess things can’t be all bad.

And on that note, I’ve recently had this made… it represents my little family. The ‘husband’ heart is for my other half (obviously!) The autism heart is for the Pickle, the pink flower is for my unborn daughter, and the ying yang is for me!

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So yeah… that’s why the blog posts have been a bit non-existant lately! And I know this one is a bit all over the place. But it’s something at least and perhaps you’ve learned a little more about me. I hope you’re all doing ok with your own crazy lives, thanks for reading my blog so far and I hope you keep reading! It’s really nice to get everyones comments and I always read your updates too. Even if I’ve been too tired to reply lately 😉

I’m off to make that chicken pie now… x