Tag Archives: Additional Needs

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. 

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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!