Monthly Archives: November 2014

Watching on repeat…

I saw a great post yesterday on Autism Support UK about what peoples ASD children like to watch on youtube.

It’s a common trait of autism, to become obsessive over certain things, and a common display of this is watching the same thing over and over again. This can be anything… some kids become obsessive over a certain cartoon, or a film and if they’re verbal, can recite the entire film from start to finish, including the accents! When they’re older, they can probably tell you every single fact ever known about that film!

It got me thinking about the Pickle and what he likes to watch over and over on repeat. So here’s a list of three things that seem to really float his boat!

  • Minesweeper – level 32 walkthrough – just to remind you that the Pickle is 3 years old and has never played minesweeper in his life.
  • The Father Ted Christmas Special – don’t ask… I have no idea. He seems to knows and recite all the Father Jack parts, although luckily for us, there haven’t yet been any yellings of “ARSE!”…
  • Charlie Chaplin – Modern Times. I have Pickles dad to blame for this one. He put a free download on our ipad (no idea why….) and Pickle has found it. It is now played daily in our house and has been for over a year now. There’s a weird eating machine scene that freaks me out a bit…. but Pickle is fascinated!

He also loves theme songs for any cartoon. Whatever he’s doing, he will drop it on the floor, and run to the tv to watch the theme tune with a very serious look on his face. This can also include songs in the middle of shows such as this: Get Well Soon – the poo song – you should click on this one. It’s full of good advice!

The pickle probably isn’t as ‘out there’ with his ipad/youtube obsessions as some of the things I read yesterday. There seems to be a common interest in kids who loved watching videos of people unwrapping kinder eggs, using electric toothbrushes and reviews for cardboard boxes!! Minesweeper came up quite a bit so I guess he fits in there ­čśë

The weird, mysterious and wonderful minds of autism! It’s funny, it’s random, it’s different, it’s frustrating and it’s wonderful.

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Piss off Christmas!

I used to get a lot of toddler feelings when the reality first started sinking in that the Pickle was not just going to ‘catch up’ with other kids. My toddler feelings and tantrums got worse when Pickle started having meltdowns, and worse again still, when the word ‘autism’ began to crop up.

These feelings would mostly consist of feeling extremely sorry for myself, not being able to enjoy life (some days I could barely get myself off the sofa), I would cry a lot, and think “It’s not fair. Why has this happened to my child?” Actually if I’m really honest, I would think “Why the hell has this happened to me?”

The toddler feelings have become less frequent, but they never completely go away. There are good days and bad days. The good days are fab, but the bad days are hard. General day to day life is better for me now, but there are always a few things that are guaranteed to press my buttons without fail, and send me into toddler mode. One of them is Christmas.

Pickle’s first Christmas – 6 months old. Dressed him up as an elf. Very excited. He got spoiled lots by the family. Pickle’s dad and I decided not to spoil him too much ourselves as he wouldn’t understand much about Christmas yet, and the big stuff would best left until next year as he would understand more, and we could spoil him rotten! Exciting!

Pickle’s second Christmas – 18 months old. Dressed him in a Christmas jumper. He doesn’t seem to understand still. He likes the baubles on the Christmas tree. I have high hopes for the day itself. Pickle gets spoiled lots. He still couldn’t talk. He wasn’t interested in unwrapping presents. He took no notice of what was going on. That was slightly disappointing for me, as some of his little friends seemed to be grasping the basics now, and I had felt excited about giving him his presents and seeing his little, happy face as he opened them, even without the understanding of why; but that never happened. Ok, never mind, he will definitely get it next year. We will be patient and next year, things will be fab!

Pickle’s third Christmas – 2 and a half years old. Dressed him in his normal clothes. What’s the point in dressing him up? I know something is wrong by this point. His friends are talking about Santa, presents and leaving carrots out for Rudolph. They’re all nattering away and singing Jingle Bells. The parents are all buzzing with their plans. Still nothing from Pickle. No understanding, no interest, no conversational skills. Christmas day is stressful. He won’t go near his stocking in the morning. He only wants to open and close the door repetitively. Refuses to look at or open any of his presents. Everyone has bought him lovely things and he doesn’t seem interested in anything. He won’t eat any Christmas dinner. I know by now that I can’t make him eat, or reason with him. Or explain anything. Or get him to enjoy it and feel the magic. Life sucks. I just wanted to enjoy Christmas time with my child. Why can’t I do that? Why does everyone else around me get this joy? Why me? Why my child? It’s not fair. (stamps foot).

So here we are, a year on, and we’re heading towards Pickle’s 4th Christmas. We have a diagnosis now. We have better understanding of the PIckle, his strengths and his limitations. We’ve had some time to adjust and get our heads around the fact that Pickle cannot understand the future, so I can’t get him to understand what Christmas is or what it involves. He only lives in the present moment. I’ve put together some simple, cheap sensory toys for him in a stocking; things that bounce, flash and spin, because I know he’ll really like them, and I think he might actually look inside his stocking this year! Not sure what we’ll actually get him for Christmas yet, but it’s not massively important. He won’t be expecting anything. Of course we’ll get him something nice, but I’m not obsessing or worrying about getting the latest toy or him changing his mind after I’ve bought it! He’ll be happy with whatever we choose.

So as you can see, this year, I’m managing my own expectations so that I cope and feel better and become a better mum! No toddler moments. Just acceptance for things being the way they are, and we will all enjoy the day for what it is. I planned to not let myself get depressed, so I won’t surround myself with too many excited children in the run up to Christmas (that is the most depressive thing EVER!), so all Christmas stuff, so far, has been good.

Then something comes along and BANG!! I’m back in toddler mode.

Nearly everyday on facebook at the moment, I’m seeing posts from nervous, excited, happy parents who child is in the nativity. They’re an angel! Hurrah! Where on earth will I find a brown sack for my child to customise into a wise man? Oh this nativity thing is such a stress! What if my child won’t say their lines or calls out to me in the middle of the performance? There’s lots of Christmassy action going on now all my friends children are 3 years old. Lots of cameras at the ready and proud parents about to shed a tear.

The Pickle’s nursery is also running a nativity play. Only Pickle isn’t in it. Pickle doesn’t have the understanding to be able to take part and learn lines or a basic routine for it.┬áPickle can’t even be a tree because he has difficulty standing still or staying sat in one place for 30 seconds and will probably fuck it all up. So the executive decision was made, that the nativity wouldn’t be suitable for┬áPickle (although he is welcome to come along and watch).

Now I’m not criticising anybody, including the nursery for this decision. The sad thing is, I know deep down, that it’s the right one. It would be more stressful for┬áPickle being made to do something he neither understands or cares about then to force him into something that he will probably make a very loud fuss about. And then it would be a nightmare for the nursery trying to hold the whole performance together with 30 other kids, and the parents probably wouldn’t be too impressed at a stimming child making strange noises, taking the show into his own hands whilst their child tries to say their part. So I get it. And it’s ok, because┬áPickle doesn’t really know that he’s missing out on anything anyway. He’s quite happy doing his own thing. So everybody is happy. Aren’t they?

When we get into the car,┬áPickle bursts into a surprise rendition of Jingle Bells. In the middle of November. They’ve obviously been practicing for the nativity.
It’s like I’ve been punched in the stomach.

I’m overwhelmed. I can barely start the car. I can’t see out of my windscreen because I’ve started crying all over again. Because┬áPickle has been enjoying learning the songs, whilst the other children have been rehearsing, and he’s doesn’t get to be part of the funny, happy, joyful Christmas experience that every other child and parent is going to get.
And I WANT my child to be involved in the nativity. I WANT to go along and see my son be an angel. Or the narrator. Or a tree. And I CAN’T HAVE IT.

And right there, in the middle of the car park, my heart breaks all over again.

Maybe he can have a small part next year when he’s at school depending on how his development comes along in the next year. Maybe not. Who knows. But in my toddler head, I’m starting to get pretty pissed off with being a parent at this time of year. Christmas is supposed to be amazing when you have kids. Christmas is supposed to be fun. Christmas keeps kicking me in the teeth. Piss off Christmas!!

Peter Pan

It’s really dawned on me over the past six months how I am bringing up a little Peter Pan.

Yes it’s hard that the Pickle doesn’t respond much when I call his name. It’s hard that he has never once asked me a question, tells me when he’s hungry, or comes to me for a cuddle. But do you know what is quite amazing? That complete lack of awareness of the negative world around him that he has. It’s part of his diagnosis, but also who he is, and it blows my mind how you can have such a beautiful innocence. Even aged three, I’ve seen such ‘grown up’ traits develop in the children growing up around him and although it worrys me half to death how he’ll cope in the world when he gets older, it’s also an incredibly beautiful thing.

I recently hosted a play date for five of the Pickle’s friends. It was like being thrust rudely into the middle of an episode of Emmerdale! It was great fun, but oh my goodnews, the social chaos was overwheming! There were group dynamics, some of the girls were best friends, until one of them touched the other ones shoe. Then they weren’t friends anymore. All the while, there was another little girl who was a bit left out, until one of the girls had gone home and the girl who was left out, became the only remaining girl. Then she was brought warmly into the circle. The trampoline had lots of autumn leaves on it and although fun at first, they became too annoying and messy for some of the children. Too many people were on the trampoline. Little bodies got pushed around to make room. Everyone shouted to get off and at one point, there were tears because we weren’t all going to go upstairs and look for pussy cats. Everyone was embroiled in dramas and invisible narratives!

Everyone that is, except the Pickle!

Whilst there were dramas unfolding all around him, the Pickle just played. He jumped up and down on the trampoline. He laughed at the others throwing leaves (and threw a few himself!) He was completely and utterly blissful and happy, surrounded by other children. He just smiled and laughed, and did his own thing.

The beautiful thing about the Pickle, is that he never notices the little things that are going on all around him. He doesn’t see when a child doesn’t want to play or turns their back on him. He doesn’t notice when he is pushed. He doesn’t react when a toy is taken from his hands. He just finds a new one. The Pickle finds joy and delight in everything that he does and he plays in a way that although he can be quite solitary, it doesn’t hurt anybody.

And isn’t that such a beautiful thing? To have complete innocence? To never worry about what somebody else thinks about you, to never want to take anything for himself, or be better than anybody else. He just exists purely in the moment he’s in. Nothing else matters to him but what he is doing then and there. He is a picture of total acceptance and tolerance of everyone who meets him.

As ‘normal, mainstream’ people, we all become tainted with the social rules and chains from very early in life. We become sucked in by the invisible games, rules and regulations that society puts upon us and enables us to function in the world we live. To survive in a socity like this, we have to grow a thick skin, we have to learn to look out for ourselves and sometimes we have to throw our weight around to get what we need. Don’t get me wrong, we also learn lots of amazing, caring traits as well! But we’re all all guilty of being clouded by conflicting emotions, worry, self doubt and negativity which we express to those around us, who in turn, learn by our example.

Now imagine being a real life Peter Pan! Isn’t that something amazing!

Diagnosis

Not sure how many of you have been touched by or know somebody who has autism.

Pickle was diagnosed last week.

He is considered ‘mild-moderate’ on the spectrum. It’s part of who he is and I love him for it.

I noticed Pickle was different when he was about 14 months old and stopped hitting his mile stones and making ‘normal’ progress, especially with his speech & language, and social skills.

Suddenly the path I was sharing with all my mummy friends split off and started taking its own direction, and it was lonely and isolating as all Pickle’s friends zoomed on ahead and turned into little adults seemingly overnight!

All the while, everyone told me that Pickle was fine, that he would catch up. Boys are always a bit slower right? ­čśë

When Pickle was testing the boundaries as all toddlers do, I couldn’t get him to answer me, look at me or listen to what I was saying. I started thinking that I was a pretty terrible mum.

As it dawned on us all that we may have a little boy touched by autism, I realised that I was the one who needed to change, to adapt to this funny, intelligent, beautiful little boy who has the most amazing smile and addictive laugh in the world. As far as he’s concerned, it’s US who are strange and confusing with all our words, different faces and funny rules. He’s going to be living in a world where people will struggle to understand and relate to him. Even though logically, everything that he does, makes total sense!

We wouldn’t be where we are today without autism. The best scientists, physicians and pioneers of our age are usually on the spectrum. It gives individuals the drive and obsession to problem solve in a way that ‘mainstream’ people could never do. Without autism, the world we live in today would be very different. Much slower paced, less treatments for ill people, less technology.

Pickle is the best life teacher I could ever ask for. He has taught me patience, kindness, understanding and unrequited love. He has shown me that life doesn’t always work out how you plan. That’s ok. Life is a journey and we’re all travelling there together, even if our paths are not the same.

I’ve learned how to fight for what’s right and develop a thick skin as I will always have to push harder than the majority of other parents to give Pickle the best support, help and education that he needs.

Somebody said recently when I told them about the diagnosis, ‘I’m so sorry. Poor little buggar.’ I politely told them that although I appreciate the sentiment, Pickle hasn’t changed. He may now be classed as having a ‘disability’, but he is the same amazing, sweet, funny little boy he has always been. Please don’t ever feel sorry for him. It’s him who sees us as ‘strange’. There is nothing wrong with him, he just thinks differently to us. And who’s to say that we’re the ones who have it right? ­čśŐ

If you feel this status was unnecessary or an ‘overshare’ then you should probably hide me from your feed as I’m so SO proud of my Pickle, everything he has achieved and I’m so excited to see who he becomes in the future ­čśŐ I used to think that people with special needs kids just said this… But I honestly would never change him.

Also we probably won’t have to ever queue up at theme parks again! Hooray! xx

Hello, it’s my first post!

Introductions!

I am a 32 year old mum to a beautiful, 3 year old boy, who we shall call “Picklehead Wigglebum” (or Pickle for short). This is what we’ve always called him! It makes me smile and I like it.

Picklehead Wigglebum is autistic. I never expected to have an autistic child. And that’s what has pushed me to start a blog. I have so many thoughts and feelings that I can’t find an appropriate place to share. I don’t want to bore my friends, I don’t think a lot of it is appropriate for Facebook, and I wonder secretly sometimes, if my inner rants and musings might actually resonate with another mum who’s sitting out there somewhere, also living a crazy life that she didn’t plan, in her house with her child! (If that’s you then do say hello!)

So although this is technically my first post, I’m going to write a new one to kick this whole thing off. It will be the words that I put up one morning on Facebook when I woke up and thought ‘fuck it’ I’m going to put this whole thing out there for everyone to see and just see what happens. Then I went to get my haircut. What actually did happen afterwards was beautiful. I got the most incredible supportive comments from friends both close and distant and the experience of putting something so raw out there and getting such a positive reaction really moved me. It’s also a good post as it explains a few things about the Pickle, and I think it’s a good place to start ­čśŐ