The truth about autism parenting

Search for funny memes, quotes and cartoons about parenting and you’ll be inundated with an expanse of choice. Type in ‘funny autism parenting memes’ and the selection is somewhat depressing.

Autism isn’t funny, some of you might be thinking. Autism parenting is really hard and shouldn’t be laughed at. Well…this is where I obviously differ. Finding humour can make things feel more normal. It’s important for me to find humour in all aspects of my parenting. I don’t discriminate between my children – they’re both equally irritating.

I don’t see my son’s autism as bad thing, nor do I see it as a superpower. My innate operating system is Windows 8. He runs on OS X. I basically understand OS X, it just takes me a while to sometimes ‘get’ it. He thinks Windows 8 is fucking idiotic and makes no sense whatsoever. Perhaps he has a point.

He also has biological toddler genes, so sometimes it’s really hard to tell whether he’s being a massive pain in the arse because of his operating system or because of the psychopathic toddler personality winning through.

I don’t want people to feel sorry for me or think I’m somehow admirable for how I manage. Because of my boy, I have developed some amazing skills and gained invaluable knowledge that I will be forever grateful for.

Ninja skills: I have the ability to predict a strike and intercept with lightening precision. 86% of the time. Not only could I catch a fly with a pair of chopsticks, I could also put a jumper on it, get a pair of trousers on, not bother with shoes and get it strapped into a car seat all whilst blocking blows to the face and keeping a calm demeanour.

Running skills: I was never one for sports at school, least of all running. Now I can go from zero to sprint in 0.4 seconds at any given opportunity. Even from a sitting position.

Language skills: I don’t bother with silly, quirky language any more and say exactly what I mean. If I don’t want to have to break out the ninja skills, I say the dinner is ready when it is exactly ready, not five minutes after I’ve finished faffing arranging the food perfectly symmetrically on the plate. I also show what I mean -for example, what is five minutes? Is it a ‘Dad’ five minutes going for a quick poo which is in fact twenty minutes? Or is it his sister’s five minutes putting her shoes on which is actually an eternity? Neither. It is the exact amount of time is takes for the last grain of sand to fall through the hourglass.

Detective skills: Like a Chief Superintendent scanning a crime scene for evidence, I have the ability to hone in on possible clues to indicate reasons for a meltdown or an incident and will immediately log it in my memory bank to ensure that it never, ever occurs again. It’s not always obvious and can sometimes take a great deal of investigation. Other times, seeing two kids and one Thomas The Tank Engine toy, it’s a no brainer. *Breaks out ninja skills.

Planning skills: Taking into account all previous incidences that have been permanently embedded in my brain, I have to carefully execute meticulously thought out plans and have a back up contingency plan for any unforeseen circumstances that may have been impossible to predict. Not only could I perfectly carry out a counter terrorism hostage retrieval operation, I could grab a 6-pinter of milk from the shop and still be home to watch 40 episodes of Thomas before bedtime. Or the same episode 40 times. It varies.

Those toddler genes have a lot to answer for.

The pliers was his idea. Not part of an emergency backup plan.

Follow The Camel via Happy Medium Mothering on Facebook

A smile is all it takes…

I’ve almost entirely stopped caring now about the judgements I receive when I’m out with The Boy. He is a fairly sizeable 3 year old and it’s not unknown to receive a disapproving look when I’m carrying him or pushing him in the buggy. I don’t care that it looks like I’m carrying a 15 year old boy like a chimp baby.

He rarely has shoes on. This is mostly met with amusement and bewilderment at how he walks across sharp gravel like it’s soft grass. I’m passed caring about that.

The ear-piercing scream and lurching towards me to swipe at my face or bite me? Yeah…sometimes a little harder to take but all in all, I don’t care about everyone else. I’m just concentrating on trying to make things better for The Boy. Mostly for my sake – I’m no angel – but a little for him too.

Today was one of those days. I’d taken him to his favourite place. Did everything he liked in the order he liked it. Made our way to the highlight of the day and all was going swimmingly. We arrived at a short queue for the steam train but all was good in the world because I’d pre-purchased the ticket. It was a minute maximum to keep him from losing his shit and becoming angry hulk boy about not getting on the train instantly. Then the big decision…whose poor carriage do we get into knowing there was going to be some ‘social issues’ whenever other human beings are involved.

Carriage full of kids. Avoided. Carriage with a small space left. Avoided. Carriage with chairs that can be climbed over (despite people sitting on them). Avoided. An end carriage, closed in, only two other people – an older couple. This will do. In my head I’m already feeling sorry for them and apologising for The Boy. I know I shouldn’t but I do do this.

We get on. The Boy instantly wants to stand next to the window. It’s where he always stands. Shit. “Ted, sitting here.” I try knowing it’s futile. He tries to push his way to the window again. “Ted, sitting here.” Desperately trying to redirect him knowing it’s pointless. In my head I’m hoping the couple get it and offer to move, but they don’t. He tries again. “Ted, sitting here.” Aaaaaaaand….meltdown.

There’s the scream. Oh, and here comes the biting. Now he’s smashing his head against the bench. Still screaming. Perfect.

The couple just look at me, horrified. “Ted, sitting here.” Utterly pointless but I try, mainly to show them that I am trying. Still they stare at me, waiting for me to ‘do something’ to stop the noise. The Boy lurches towards the woman’s leg and grabs her ankle. “Owwwwww!” she shouts as The Boy buries his nails into her skin. Fuck. I wasn’t expecting that. “I’m so sorry. He has autism and doesn’t understand why I’m stopping him standing next to the window, where he always stands.”  Still nothing. Just a stare boring into my soul, whilst leg rubbing. They’re looking at me like I’m the most abhorrent parent in the universe.

In a second, it flashes across my mind. “Get out. Just apologise and get out. It was a fucking stupid idea bringing him here today.”

As I’m visualising taking him off the train, my mouth opens and what came out even surprised me. “Would you mind if we swapped seats?”

She looked at me like I’d just asked if it would be okay if I pulled my knickers down and take a dump on the floor. She didn’t answer me – just stared. After an excruciating five seconds, she and her husband stood up and let The Boy stand near the window, making their annoyance well known with their audible tuts and sighs.

The train moved forward. The Boy was calm. Sweaty and red, but calm. I held him on my lap and kissed the back of his head. Inwardly, I was laughing. Laughing at the lunacy of the situation that I find myself in so regularly. Laughing at the rage The Boy must have felt when he gouged the poor woman’s leg. Laughing at how the carriage was eerily silent after what had probably felt like an eternity of screaming.

About halfway into the train ride, all was still calm. Everyone had resumed normal business. The kids were chatting busily with their parents, asking a million questions and dispensing a million facts. The traumatised couple sat next to me had relaxed into the ride and were chatting about the flora and fauna. All was well.

As I looked up, I noticed the mum sat opposite looking at me. She held my gaze and then she smiled. She continued to look into my face for a few seconds before we both looked away. In those few moments, she had said a thousand words:

“It’s okay.”
“I understand.”
“I don’t judge you.”
“It hasn’t bothered me.”
“You’re doing great.”
“We’re in this together.”

I don’t know what her experience of autism is, nor do I care. She just got it and wanted to tell me. That’s when the tears unexpectedly erupted. I buried my head into the back of The Boy’s mass of tangled hair and let a few tears fall. I’m sure she wouldn’t have wanted me to have cried at her show of kindness, but it meant so very much.

We all have those desperate situations as parents, regardless of whether your child is impaired or not. Those moments when you think, “what the fuck am I doing? I have no idea what to do next.” You know you’ll get through it. You always do, but that bit of recognition speaks volumes and makes it feel okay.  A smile is really all it takes to make things feel a little better. Thank you to her. I will always be grateful for that smile.

Is it really good to be different?

For World Autism Awareness Week, I wanted to share some photos of The Boy, celebrating what it is to be different. I wanted to highlight his quirks and nuances and be proud of all the things that make him different.

It seems being different is celebrated in a way to help children that don’t quite fit in feel better about themselves. But should we really be celebrating difference?

I’m a persistent over-sharer, not because I get to hear people congratulate me on being brave for being different, but because I seek solace from those that say they feel exactly the same way. How many of you have felt relief after reading something that you could relate to on many levels? How many of us belong to groups and join forums just to be among like-minded people? Is that a bad thing? It’s human nature to want to belong, to fit in, to be accepted and to feel comfortable around those that are similar. It is what helped the human species survive in the first place after all.

My olive skin is a completely different shade to my daughter’s pale creamy tones. But we share the same DNA. My son learns and understands the world differently to me. But we share the same DNA. I have friends of all different faiths, backgrounds, colour and ability. But as humans, we are all variations of the same DNA.

Perhaps it’s not revering people’s differences that should be encouraged, but understanding and accepting that, actually, we’re not all that different. There’s probably more that unites us all in our similarities than there ever will be to divide us in our differences.

As the research rumbles on into understanding autism, I hope that one day, autism will be viewed in much the same way as a personality trait or characteristic; something that is taken for granted rather than feared. I don’t want to cure my son’s autism anymore than cure his shaggy, light brown hair or round, green eyes. It’s part of him. Of his DNA. So, instead of celebrating my son for being special or different, I’m going to commend him just for being him; undeniably brilliant.

Photo credits to my dear friend, Maria.

Why can’t you be more like…

I thought having autism might free my son from my perpetual comparing but apparently not; as we all sat together in his group session for children with communication and socialising difficulties, I studied the only girl in the group. She’s a gentle soul, afflicted with over receptive senses that suppress her. She contorts her body to try and cope, making the space she is in and the world she struggles to understand as small as possible. She is completely silent apart from the delightful tinkle of laughter she emits when she’s being tickled and I’ve never seen a child so mesmerised by shaving foam. What I can see is a calm, passive, non-aggressive, quiet and amenable little girl – the very opposite of my boy – and for just a few guilt-ridden moments, I stare at her and wish that he could be more like her.

I see her for a snapshot of her life, once a week, and can only see enviable qualities that my son doesn’t have. What I don’t see is how long it takes to get her dressed. I don’t see her screaming in pain as she’s being washed. I don’t see her frozen in fear at the sound of a plane. I don’t see how very small her universe must be in order for her to cope. I’m guessing at these things of course. But we all have desperate moments.

Perhaps in a tiny snapshot of life, there’ll be someone looking at my boy and only seeing a passionate, curious, energetic, enthusiastic and happy child and perhaps wishing that their passive, introvert, quiet and shy kid was more like him. I wish that someone was me but it isn’t. In the fog of exhaustion, it is sometimes just too hard.

Now I’ve got it off my chest, I could make a solemn vow, from this moment on, to stop making comparisons when times get tricky…but I won’t. It’s a promise I know I will break and that will only add to the mountain of guilt that I was bequeathed the moment I became a parent. No…I will let the thoughts in. I will take a moment to look at them, accept their truth, and then let them float on by without further attention. I will remind myself that everything passes. I will remind myself that I am doing the best I can. I will remind myself that everything will be okay. I will remind myself that I am that someone (very nearly) all of the time.

(Follow The Camel via Happy Medium Mothering)

Strategies for spectrum children that might be useful for ALL children

There is a statistic that gets thrown about that dentistry is actually about 30% evidence-based and 70% anecdotal. I reckon that parenting is probably very similar and how I have made a five year old that only appears to have all the annoying traits of every other fellow preschooler is definitely more luck than judgement.

And then came my second born who turned out to have additional needs associated with autism. Everything that works for the neurologically normal child has no place in the universe with a spectrum child, mainly because they’re not experiencing the same universe. However, with a little gentle support and guidance (for me, not him), it all became painfully clear – I have to get into his universe. A world where things are literal and sometimes very overwhelming, to try and merge the two realities together.

Whilst on this journey, I have learnt many ways to help him (and me) cope and it became obvious how five main strategies in helping our spectrum child would also be enormously helpful to our non-spesh kiddo.

The Iceberg Analogy

Our boy is fairly non-verbal and his only means of communication presently is screaming, biting, hitting and physical positioning. Very antisocial behaviour which his father and I happily acccept (mostly) because we know he has no other way of dealing with whatever it is that is bothering him. However, we still have to be detectives to find out exactly what it was so we can (hopefully) avoid it the next time. I make this sound easy of course. A spectrum child may have an increased sense of smell, taste, hatred of lights and sounds, and many other things we take for granted that become overwhelming for them.

This got me a thinking. Just because my son has ASD, does this make his feelings more valid than my daughter’s? Ugh. No, I suppose it doesn’t. Which really means I have to stop dismissing my daughter’s feelings so readily just because she is sobbing her heart out, frantically licking chocolate spread off a spoon, because I didn’t do something in quite the way she wanted. I have to not focus on the behaviour being exhibited (as fantastically irritating as that may be), but look at the cause lying under the surface and see what I can do to help.

Take-up time

My son has no concept of time and sand timers offend him. Getting him to understand that something needed to come to an end so we could leave the house, especially when he was micro focused on his trains, or transfixed with Thunderbirds, was always a bit tricky. Then I was introduced to the idea of take-up time – a short amount of time for him to comes to terms with the fact that something will be ending and something new beginning. I have found that he likes counting so whenever his activity needs to end, I explain, “In three, this will be finished” and give him a countdown from three using my fingers as a visual cue. Not a lot of time, 3 seconds, but it seems enough to allow him to cope with it.

I now use a similar strategy with my daughter. She is more aware of time as a concept, but has no clue what time means. So I use watches, clocks and timers as a visual way to give her time to come to terms with what needs to happen next. Yeah, I may still get the mind melting whinge noise on occasion, but on the whole, it really does work a treat.

No is a swear word

This has to be one of the hardest things I have ever had to do. Give up the N word. It’s not until someone tells you that you need to stop using it that you realise how thoroughly entrenched it is into daily life – especially with children. Every other word seems to be a teeth-clenched or exasperated, “NO!”

So what’s the thinking behind it. Well, spectrum children are very good at filtering things out, meaning that they can sometimes get mistaken for being deaf or ignorant. They’re merely having to bang the radiator repeatedly with a wooden spoon so they can focus on that rather than whatever it may be that is bothering them. Therefore, the word “no” gets filtered out too because it’s part of the background stimulation that is discombobulating them. Plus, they aren’t learning anything from the word. It doesn’t provide any information for the spectrum child. So what do you do instead? This leads me to the next strategy.

Say what you want, not what you see

The boy has particularly anti-social behaviour. Just saying “NO HITTING!” every time he hit or bit another child, made no difference to his intention because it provided him with no information on what to so instead. It also left me feeling very frustrated because I could see it meant jack shit to him. Therefore, giving him an instruction such as, “hands down” or “feet on floor” provides him with a clearer directive, and me a productive way to deal with the behaviour. He hasn’t stopped hitting or pushing but he definitely responds when he hears me saying, “hands down” meaning he’ll hesitate before sending a toddler hurtling off the top of a slide giving me enough time to catch them.

I think all children are very open to the power of suggestion, and hopefully now, my girl also benefits from clearer guidance focussing on the positive rather than the negative.

Backward chaining

Definitely my favourite. Spectrum children can disappear for hours in an activity that motivates them and have zero interest in anything else. This makes playing with a spectrum child quite difficult. Encouraging them to partake in other activities that might be a bit of a challenge for them is very important and how you do this is something called ‘backward chaining’. So you have a simple puzzle, for example, fill it in leaving just one piece out, then get the kid to put the last piece in, congratulate them and say, “well done for finishing.” The next time, you leave two pieces out and so on. This also works for getting dressed. Put all the clothes on, all bar one arm and then encourage them to do it. When they do, you say, “Well done for getting dressed!”

The thinking behind this is self esteem. We all know that sticking one arm in a jumper is not getting dressed but rather than laying out a pair of trousers and a jumper and saying, “get dressed and I’ll help when you get stuck,” by working backwards, it means there is less chance of failure; the child doesn’t get despondent because the activity is too hard and overwhelming therefore the activity always feels good.

So there you have it. Easier said than done. In fact, if anyone can give me ideas for alternatives to “NO BITING!” I would greatly appreciate it. “Kind mouth” or “soft teeth” just ain’t cutting it at the moment. Answers on a postcard….
Picture credits:
http://pixgood.com/
http://flipcomic.net/
http://blogs.babycenter.com/
http://www.gopixpic.com/

Consciously Uncoupling Facebook

It’s been one whole day. One whole day without flicking my phone screen, scrolling down and looking for a number to notify me of the amount of Facebook interactions that might be awaiting my attention.

It has been made easier by the fact I have just worked a twelve hour shift where my fingers have been needed elsewhere; expertly removing six months worth of detritus that had calcified in periodic layers like the sediment of an oceanic lake. Had I not been gum gardening, my fingers may have been twitching desperately over the Login icon.

It has come to represent the ticking clock to an insomniac. The sleeping husband to a mentally unhinged new mother. The chocolate profiterole mountain to a gastric band recipient. For me, presently, it is like a window looking out on all the fun the world is having whilst I’m stuck in my bedroom, grounded. 

When I couldn’t conceive, I wanted tell to every pregnant patient that walked into my surgery to fuck right off. When I miscarried, I wanted to whole world to eat shit and die. When I had PND and mothers were telling me how great motherhood was and how much they loved it, I wanted to scratch “you’re a complete wanker” into the side of their car. I’m just not that good at being happy for people when I’m feeling utterly miserable. 

It’s not really Facebook’s fault that everyone only posts the best parts about their lives and not the drudgery and despair (some people do but they get blocked almost immediately – who wants to read their boring whiny pissy pants statuses?). It’s no-one’s fault either that my spectrum child, my spesh little boy, has a universe the size of a pea and that I have to squeeze in their with him. 

So I’ve switched off from the torment of family holidays, road trips, laughter and happiness because most of these people are my friends and family, all of whom I love dearly and I really don’t want to start vandalising their property just because I’m a bit bitter and twisted. I’ll just hunker down, ride out the storm and wait for my boy to feel ready to join the world again and I’ll be there with him, holding his hand, not sporting a criminal record.

Room for one more in there, Boy?

There’s no triumph quite like a parenting triumph

Hairwashing. Quite a big triumph in my household.

Sometimes, when I’m in the depths of motherhood, I feel like I might be the only one that has ever felt a certain way. But then I realise that it doesn’t really matter what family you’re in; single parenting, step-parenting, special educational needs parenting, surrogate parenting, foster parenting, adoptive parenting, LBGT parenting or just plain old bog standard parenting, we all feel the same triumphs and tribulations. They may just be to different things.

Very recently, my son was diagnosed with ausomeness. Nothing his Dad and I didn’t already suspect. The last twelve months have been hard. I’ve had a chronic low level grief for not having the ability to be able to automatically understand and connect with my son.  I’ve had to work hard at it whilst the rest of the family stood and watched, just waiting for their turn to be able to connect. 

I wanted to write down a few of his triumphs for him to hopefully look back on one day. It wasn’t until I started writing down the relationships that have been unfolding between him, his Dad and his sister that I truly felt it. The paradox of heartbreaking joy. I hadn’t realised how I ached for a lost companionship, especially that his sister could have been having with her brother. But it was never actually lost. I just hadn’t been able to see it for what it was.  Here is the letter I have written:

Dear Ted

It’s your Mum here. I wanted to give you an update on how you’re doing. Your Dad has a few words to say too.

You are now exactly two and a half. These last few months I have seen the sparkle in your eyes ignite a fire in your belly. It seems you have started to open the door to communication and this has opened your world up to new and wonderful possibilities. 

You have discovered that if you point at something, you will generally get it. Unfortunately for me, this is usually at the crisp cupboard but I also take this as a general hunger cue. That and you raiding the fridge dragging out anything you can, carrying it triumphantly into the front room. I can (sometimes) distract you with a banana but on the whole, it’s all about the crumb covered fish products, monster munch and raisins. You did eat some butternut squash risotto the other day so hopefully those vitamins will last you out till the end of the month.

You have given me a name. A high pitched “DOR!” I like my name a lot. You have chosen this name out of your few sounds you like to make. I’ve always fancied myself as a Dor. You have named your Dad too. You have consistently called him “Dada” a number of times now and this has literally made him cry with happiness. 

You instigate games. Your favourites are the Freeze Game and the Blowing On Your Tummy Game.  The Freeze Game consists of me being dragged, usually by the neck of my jumper, into the garden whereby you shout “eeeeeeeee!” at me. This is your word for freeze and I know I have to copy and stand still. Then you make a roaring “dadadadadada” noise and I have to run and grab you, fling you upside down, tickle you and land you on your feet again. We run around in circles until you shout, “eeeeeeee!” and it starts all over again. The Blowing On Your Tummy Game is pretty self explanatory. However, you let us know you want this by pulling up your tshirt and sharply inhaling with a massive cheesy grin on your face, knowing that at any moment your body is going to be alive with tickles. Your giggles and squeals lift the roof. You have an insatiable appetite for tickles shouting “goooooo!” with all your might before collapsing into laughter again.

You have words. “Ah da” means all done. You use it to tell me when you have finished eating, when you want to get out of the bath and when you want me to pick you up. “Schrain” is your word for train, your favourite vehicle by far. “Lane” is plane, your second favouritest vehicle. “Car” your joint second favouritest vehicle. Basically, if it has wheels, it’s your favouritest.

You have signs. You sign thirsty when you want a drink. You occasionally point at your mouth when you want food. You are learning to use the sign to ask for help when you are stuck with something (normally something you shouldn’t be doing in your sister’s room. Shhh, don’t tell her that I let you play in there when she’s not around).

I never thought I’d be happy about you two getting up to mischief

You have a bond with your sister. This has been the most magical of all things to watch materialise. Your sister loves you dearly. It was always heartbreaking to see her face when you didn’t reply to her morning greeting or reciprocate a cuddle she so desperately wanted. But she understands now. She understands you are different. She understands that you cannot use words yet but you are learning and she is happy to help teach you. She can be scared of you at times. You still take a lot of your frustrations out on her but her patience and understanding through her tears makes my heart ache. Her beauty is beyond bounds and I think you know it. You follow her lead, clearly not getting the same joy from an activity without her. You embrace her with a love that I know you feel deep down. I don’t think she really knows how much she means to you yet, but she will. In the meantime, I will continue to watch you two grow together and feel pride that I never knew I could feel.

You’re spreading your love outwards to your Dad too. He feels the bond between you is flourishing and it fills his heart when you sidle up to him for a cuddle on the sofa. You have special things that only he does with you. Like riding on the back of his bike with your new bike seat. You don’t like it when it’s stationary but it doesn’t take long for Dad to get up to great speed, blasting your face with gusts of air. He hopes to take you on many great adventures on that bike. Your Dad loves having you as his co-driver, watching you thrust your hand out the window the moment it is wound down to feel the cold wind on your fingertips. Or watching you sleep, mouth gaping wide open as you succumb to the warmth and motion of the car.

You’re amazing, Ted, and you’re about to embark on a new adventure. You’ll be starting at a special place where wonderful people will continue to help you thrive and blossom. Your sister too is starting her own adventure into school, on a different path to enlightenment. You’ll miss her, your sidekick.

I’ll end this update now by saying keep up the good work, Mister! It’s an absolute pleasure getting to know you and all your funny little ways. You fascinate and inspire me all at the same time. I also want to say thank you. Thank you to both you and your sister because ultimately, we really don’t care what either of you turn out to be, we are just so proud of who you both are.

With all our love, now and always,

Dor & Dada