Tag Archives: Autism Mum

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

It’s happening again…

Today I picked up the Pickle’s home/school book and opened it. My heart sank. 

It’s happening again. 

The Pickle spent his first year at a mainstream school, then we moved him to a specialist school. He needed to be moved, his sensory issues were making him more and more isolated from his classmates as he couldn’t join in, stay seated and needed to be removed a lot from the classroom. 

The other problem when he was at mainstream… was pushing. 

“Pushing” is a word I’ve grown to absolutely hate. I used to associate it with ‘pushing a door open’ or ‘pushing an agenda’. Now I associate it with “Pickle pushing small children over.” 

It was a nightmare of epic proportions. It started the year before at nursery. They were overrun with kids, understaffed and not trained whatsoever to deal with autism. He used to get overstimulated by the noisy, chaotic environment, he wouldn’t do what the others were doing, so he was left to his own devices. He didn’t know what he was supposed to be doing, which made the anxiety and sensory issues worse. Then he would start to push others. Hard. 

It started slowly, he did it once, then a couple of weeks later, he did it again. Then the gaps in between got less, until suddenly, all the children were scared of him. He had always been the quiet child that no one really noticed. Now he was a crazy tyrant, running around the room, pushing over little girls like dominos. 

Most of the children wouldn’t play near him. They would walk away if he came near. Some of them would sit down on the floor as soon as they saw him coming for fear of being shoved. Sensible really, but it broke my heart. 

It became a huge problem. I started to dread going to pick him up. Every single time, there was an awful story. I started to have special arrangements to pick him up from a different area, as the transition of me picking him up, speaking to his key worker would send him into a pushing frenzy. I was the only mum who had to hide round the corner to pick up her child. 

One summer day, the kids were all out in the garden playing on the trikes and in the sand. I went to collect the Pickle and went into the garden. The Pickle was peddling around on a bike. I had a quick update with his key worker, told how many times he had pushed that day… then we both clocked him at the same moment running towards a girl (it was always girls?!) at full speed. We both shouted and ran towards him but we had no chance. He pushed this little girl so hard into the brick wall behind her. She smacked her head and went down. There was a huge commotion, blood, tears, a crowd of excited children and worried adults. The girl was picked up and rushed off. I dragged the Pickle towards the door in slow motion with him hanging off me giggling and everyone staring. I was the mother with no control over her son. The mother who’s son hurts other children. The mother with that child you don’t want your child to be around. 

Summer holidays came and went… I couldn’t take him anywhere, trust him to play near other children. He pushed a child off a playground bridge. He pushed and pulled hair in soft play. I had a 3 month old baby, so I couldn’t shadow him. The summer holidays were long. 

September came. Pickle started school…. and the pushing stopped!! Amazing! Happy happy days! 1 week went by, 1 term, Christmas came and went, no pushing!

The second term started well, then one day I came in to collect him, and was told he had pushed another child. 

The hair on my neck stood up, I got that horrible feeling in my stomach that I hadn’t felt for a long time. “Oh crap” I thought. 

Please let it be a one off. 

And it was… until a few days later, when he pushed again. 

Within a month, we were back to an obsessive pushing regime. It impulsive, it made no sense. No triggers, no patterns. He would get a look in his eye, and just go for it. Always the girls, or smaller children. He started pushing his baby sister at home too. I couldn’t leave them for a second, not even to go to the bathroom. I got so stressed out that I bought my first pack of cigarettes for 6 years. 

We tried EVERYTHING! ABC sheets, positive reinforcement, removal of privileges, time outs, visuals, we got the autism specialist teacher involved (although she couldn’t get in to see us for 3 MONTHS!!!). 

In the end, the behaviour was becoming so difficult, that the headteacher of the school suggested that he might be better off in a specialist setting. I was heartbroken, but decision was made that he should be moved. 

I had 2 months before the end of the school year, and I put every energy I had left into finding him a new school, then securing him a place for September to avoid extra upheaval for him. That had its challenges too – the school wasn’t sure if they wanted to take him because of his speech delay, and because of his sensory needs (I.e the pushing). 

Well I fought hard and I got him in. He started in September last year. 

It was the best decision we ever made for him. His development soared. His language, social skills and understanding all blossomed and he was genuinely happy. Every single day. He loved school. We were all happy. Things were good. 

He didn’t push. He was involved in everything his class did. 1 term goes by. Then Christmas, then into our second term. Half term came and went…. I’ve got trust in him again around other children. I can relax more when we’re out. I think often about how much better things are, and how well he’s doing. 

…Then I opened his home/school book on Thursday. 


What the actual f*ck?! Biting? BITING??!

The Pickle has a need to chew (another sensory thing) but he’s never ever EVER bitten a child?! He was queueing up at school to wash his hands, and bit the child in front of him. Seriously???

Same familiar sinking feeling in my gut… same thought process. “Maybe it’s a one off’. It sounds like it was dealt with well… he’s at a school that understands behaviours like this… “Hopefully it was a one off”. “PLEASE let it be a one off!”

He comes home from school the next day, I nervously open his home/school book…. nothing!!! He’s had a great day. Phew! “Hopefully just a one off”.

The Pickle comes home today, I open his home/school book, and my heart sinks. 

It’s happening again…

I’ve played this game twice now. The biting is new, but I know how it works. I know we’re about to have a really… REALLY tough few months. I know this is going to get a lot worse before it gets better. I’m already mentally preparing to start working with the school. Daily phone calls. Visits. Shame and embarrassment with what I’ll hear on a daily basis. Fear of the other children rejecting him. Wondering what other parents are saying when their child comes home with bite marks. Not being able to take him out without an incident. I’m ready to do all the interventions again, that I know deep down, probably won’t work. Not until he decides that he’s ready to stop. 

I’ve played this game before, I just haven’t figured out yet how to win. 

Wish me luck. 

The Picklehead Comedy Show


Sometimes I have to take a moment to sit back and feel very proud of myself. I have somehow managed to produce a beautiful human of a boy who is very bloody funny. 

He has a brilliant sense of humour, creates his own games and jokes, and when he gets the giggles, so does everyone else in the room. You have to see it to believe it. He doesn’t let a little thing like autism get in the way of having a good laugh. 

The best moments though, are the ones that he doesn’t even realise. When autistic logic and the mind of a 5 year old collide, you can really get some little gems. 

Now these might only be funny to me, because, well.  I’m his mum!… We all think our own kids are the funniest. But here’s a few of my favourites that I wanted to share with you: 

Counting ducks

We were practicing counting in the bath. (The Pickle was in the bath, I was kneeling on the cold floor with a warm glass of wine! Such is motherhood glamour…)

I put 5 ducks in front of him and ask him “how many?” 

Pickle says “1,2,3,4…”

I say “Can you count in your head?”

Pickle looks at me with an ‘ok whatever’ expression, then calmly gathers up the ducks, balances them on his head with a deadpan expression, and says “1,2,3,4,5!”

Gotta love that literal thinking. 

Santa

Last Christmas, the Pickles school had a cheery Christmas fete. The normal sort of thing. Raffles, tombola, and the opportunity to meet FC, the big man himself. Now last time the Pickle met Santa, he was 2 years old, screamed the whole garden centre down with the mother of all meltdowns. But we figured, hey why not. Let’s try again. So we queue up, pay our pound, and take the Pickle in. We’ve prepared him for this over the last week, told him all about Santa, and his understanding is good enough that we thought he might understand and maybe even enjoy it. 

We obviously prepared him very well indeed, as he sprinted ahead of us, into the grotto at 100mph. It’s all dark, and as I walk in, I jump out of my skin when a ridiculously loud “HO HO HO!” booms from Santa’s tent. 

I walk in to see the Pickle frozen to the spot staring at Santa. He looks horrified! It’s really dark, the only light is coming from the rave worthy, offensively flashing plastic Christmas tree, next to the big fat figure sat in the dark chair behind a big felt beard. Just some creepy eyes and a nose poking out. Jesus, I would have been scared! 

So Santa starts yelling at Pickle… “WHAT’S YOUR NAME? HAVE YOU BEEN A GOOD BOY??” Poor Pickle is still frozen to the spot, wide eyed at this monster. So I do what an autism mum does… lean down gently next to him and tell him quietly and gently what to say. This tiny, quiet, mouse like voice comes out of the Pickle, as bless him, he tries to answer the noisy questions as best he can. His body is completely stiff, and I’m wondering if now is the time to wrap him up under my scarf and start running. 

Suddenly, in the middle of “AND WHAT DO YOU WANT FOR CHRISTMA… ”

The Pickle stands up tall, puts a finger to his lips, and crossly shouts “SHUSH!!!!”. 

I have to give the boy credit. It was even louder than Santa. And it shut him right up too! It shut up everyone in the tent! There were a few seconds that felt like an eternity, where nobody said anything. Everyone just waited… Then Santa very quietly and meekly said “here’s some chocolate for you then. Merry Christmas.”

The Pickle took his chocolate, said “Thank you Santa” (yes!) and walked out of there like he owned the goddamn grotto. Like his army, we marched out faithfully behind him, leaving the tent of doom behind us. I overheard someone on the way out say; “well you can’t really blame him… he is a bit bloody loud!”

I was very proud of the Pickle. And noted to myself to slip his speech and language therapist an extra fiver! 

Nice one little man! Even when you’re scared, don’t take any crap from a big, fake Santa that shouts at you. 

That’s my boy that is! 

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. 

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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