Monday 26 October 2015

Confessions of an Autism mum

Most of you reading this already know quite a lot about me by now as I have a tendency to get it all out there for the world to see!
So I thought it was about time I was completely honest with you, and shared my.....
 'Confessions of being an Autism mum' 

How many of these can you relate to?

  •  I hide in the toilet for 5 minutes peace, I can usually manage a few minutes before I get busted as they've all got wise to me now, so think I'm gonna have to find a  new spot (maybe the hubby's man shed?)
  • Sometimes I lay in bed at night and I suddenly remember  that I've left the blumin washing outside on the line... hmm what to do... get out of bed to bring it in.... nah it can wait 'til morning

  • On particularly challenging days my old faithful friend the bottle of dry shampoo comes out. I just dont have time to wash my hair so a quick spray and I'm good to go for another few hours, and on really busy days it's a woolly hat all the way for my head! 
  • Sometimes when I can't face the world, I am exhausted, or just cant process anything else, I make excuses to get out of things. Being a mum to an Autistic child means I'm on high alert ALL of the time sometimes my battery feels a bit  ...well....flat.. I haven't even got the energy to explain all that to you half the time just, so I say I have a headache 'cos its easier. (please forgive me dear friends)
  • Cold coffee is my constant companion, several cups are consumed to keep energy levels up..  I would probably go into panic mode if I actually sipped a hot cup as I have forgotten what hot coffee tastes like nowadays 
  • When I have forgotten to wash the uniform a good old wet wipe rub down will do ! 
  • I have eaten a whole tube of pringles for my tea collapsed on the sofa infront of the soaps
  • I very rarely answer my home phone as I just cant chat. I am usually too busy making three dinner choices, chasing the puppy who has stolen my slipper or acting as referee to three kids intent on starting WW3. (If its someone important they know to text me I say)
  • Shower time is an event I have to psych myself up for (not my own obviously .. I mean that would be silly....for my son of course !!). So its towels on the floor at the ready as Noah himself would suggest we build an Ark. We have floods of epic proportions at shower time...oh and we mustn't forget the streaking giggling nakedness we have in abundance too, as he runs around the house shouting "dont look at my personal parts."
  • Doing the weekly shop for me is a break... I savour the solitude and keep my head down in case I bump into someone I know over the frozen peas. But then my silence is halted as my phone beeps and I know my times up .....
  • Sometimes if I sit down... well...... I fall asleep when watching catch up TV in the afternoon (but dont tell my husband as I prod him all the time for nodding off during Downton)
  • I often embarrass my son by walking him out to his taxi for school in my 'Elf' pyjamas if it's been a manic morning! (Then I run in quick hoping the neighbours didn't spot me and my son cringes as he waves goodbye) 
  • We may have messed about with the clocks once upon a time....well anything for an extra hour  in bed!!
  • SHHH. .don't tell anyone but those cakes I sent in for cake sale day at school were shop bought ..( I think I got away with it by putting it in a cake tin ) 
  • Such a sad time for the family was when our pet rabbit died while we were away on holiday, so nanna was instructed to but a replica rabbit and switch it MI5 stylie before we arrived home. Of course he spotted it straight away ! 
  • I love my slippers. Given the choice I would wear them on a night out. Pah.. whats a night out anyway?! Heels are out, slippers are in that's my motto. Oh and they must have good grippy soles 'cos you never know when your gonna need to jump up off the sofa to rescue a child stuck in a sleeping bag. Or intercept a cushion that's heading towards the cold coffee on the table... and trust me skidding across the floor at my age isn't a pretty sight to behold let me tell you! (I have even been known to collect my daughter from school in my slippers when in a rush ....I waited in the car for her of course)
  • And finally and hardest to admit I  am secretly envious of other mums Facebook pages. Ahhh I know I shouldn't be and often its just a fleeting thought.. ...but sometimes I look at pictures of lovely perfect days out and all the blumin smiling happy faces and deep down secretly wish that was us.

But then my son brings me back to the room, and makes me smile by simply being him and sliding accross the floor like a slug in his sleeping bag chasing the dog....and I feel guilty for feeling like that.

 Because I love him to the moon and back. My confessions don't make a bad mum , I'm just human you see and nobody's perfect ...especially me ! 

                                                                                Mrs M x 

Thursday 15 October 2015

Unspoken Bonds - by an Autism Mom.

"It feels as though I had a string tied here under my left rib where my heart is, tightly knotted to you in a similar fashion." 

I don’t know about you but I have always been a sucker for a good old bit of escapism into Jane Eyre's world of period costumes and romantic drama. And without fail that line always leaps off the page right at me every time I read it. That magical connection between two people that needs no words. No explanation or thought. It exists...... just because!

This is how I feel about my children. They're my world and I am connected to them through invisible bonds. You see they will always be part of who I am, it’s instinct, and I just feel it.... like string connecting our hearts together. 

I feel their pain; I share their joys and laughter. I worry when they worry. When they cried as babies I knew what they wanted. When they stir in the night I am there to soothe them. When they need care and love I am there. No words are ever needed, because I’m their mum.

I have close relationships with each of my three, and my girls are growing up to be wonderful young ladies. I can see their independence developing, and their personalities blossoming, as bit by bit I slowly have to loosen the string that connects us. They have their own minds, and ideas, and they will leave me one day to live their own lives with their families. That bond will always be there but I will have to let it stretch some more to let them go when the time is right.

My relationship with my Autistic son feels somehow different. Our strings are still connected as tight as ever, if not tighter. Maybe it’s because he can't always express himself, or because people find it hard to understand him. Perhaps it’s because I am so fine tuned after 11 years of being his safe place. But I just know that I get him.... because I'm his mum! We are interlinked. He trusts me, and relies on me to get through his day and that leads to something wonderful and unique as a mother. Yes things are tough but there is so much to be thankful for too. When things are good, they are amazingly good, but as ever life has a habit of throwing little obstacles in our way, like this week for example....

Rather inconveniently I developed a painful mouth abscess on the nerve of my tooth (that I really could have done without). But as a result I had become shattered on the medication, and had to keep sneaking off to my room as a way of coping with the pain. It hurt to talk, and move my head, and you could say I was feeling pretty sorry for myself. I am ashamed to admit my kids ate take away on a school night, and ready meals that pinged in the microwave! My floor didn’t see a hoover for 3 days... and well my hair didn’t see shampoo for 3 days either if I’m honest!!

As the days passed and the routine of home disintegrated, I could feel my son’s anxiety ramping up as a result. He was stressed and worried about me but just couldn't express it. I had become distant because of the pain, his routine was out of sync and I was being a rubbish mum.
After a particularly manic half hour, in which I was close to losing the will to live, whilst trying to get him to take a shower, my son (who bear in mind has Autism and struggles to express himself) floored me with this comment.....

"Mum I feel your distress like a whale call"

 It hit me......Just like I feel his worries and pain, he feels mine. He couldn't explain that it was making him anxious, or defiant he just knew he could feel it. He could feel something wasn't right. Like a whale calls out to her mum in the ocean. It’s just his instinct.

I realised that just because he is Autistic, and he can’t always articulate how he feels, that doesn't mean he isn't feeling it. In fact if anything I think his Autism amplifies his feelings all the more.

My girls, yeah they gave tea and sympathy. But my son...he felt it. He felt a knot in the string that connects us, no words or explanation needed... he just felt my distance and it confused him. His instinct told him something was out of sync.

There's so much about Autism we don’t understand, wonders and talents that lie yet undiscovered in our kids. My son seems to feel the world around him, it’s all amplified. He smells and touches and sees things that I take for granted. So what that language doesn’t come naturally to him, because he works on an instinctive level that I can only glimpse into when I view the world though his eyes. Children like my son have a lot to teach us about relationships and love. He just feels it, he doesn’t over analyse and complicate with words, he feels the bond he has with others and holds on tight... just because!

Mrs M

This was Published by Autism 15/10/15

Sunday 11 October 2015

How my child teaches me to think outside the box

I have been thinking a lot lately about how each and every person with Autism is so unique and different. My son included. They say if you have met one kid with Autism...well’ve met one kid with autism. And you can see why this can then lead to so much confusion for people, as there really is no one size fits all.

We have the ‘Triad of impairments’ as a guideline but even that can be interpreted differently as each person is somewhere different on the spectrum. Well meaning folks in the past have said to me things like “well I never knew he was Autistic  because he looks so normal”, or “he can talk well” or the worst one I ever had was.... “I had high hopes for your kids, what went wrong in the genes” (I know I know...don’t even go there with that one!!!)

You see I reckon that your average Joe’s understanding of Autism sadly is like that film...what was it again..... Rainman?

And that couldn’t be further from the truth really. Yes there will be some people who share similar traits to Dustin Hoffman’s character, but many won’t. Each person is different, unique and they have their own challenges and strengths.

Take imagination for example. Most people assume that if you have Autism you have no imagination. But for my son I would argue that’s not necessarily true. He has many strengths and faces many challenges, because he sees the world differently to me. But would I say he has NO imagination at all... No I wouldn’t.

 So maybe to understand this I just need to look at the world through his eyes.

We have two dogs  at home and they’re  always play fighting, one is a puppy so  as you can imagine there’s lots of tail pulling and growling that goes on. My son sees this, thinks it look great fun, and of course he wants to join in the rough and tumble. But every time he does they stop their rough play and lick him all over his face (much to his annoyance) because he wants to be a dog like them... and play like them ...not be licked. So his ingenious idea was to buy a dog suit so they will be tricked into thinking he’s a dog like them!! Logical eh! I mean it’s a very literal kind of imagination... But imagination none the less isn’t it?

His view kinda makes sense to me if I see it through his eyes.

Another example is when my son wanted to play finger football on the kitchen floor going back a few years ago now.  So he decided to draw the pitch (in permanent black marker!!!) you know like you do, across the whole tiled floor??
Hmmmm, I have to admit I wasn’t best pleased at the time. But, looking at the positive side of this as we mums often do, he had actually created his own game. He had then played finger football with his two teams playing against each other scoring goals into cereal boxes at either end of the room.  He was able to use his knowledge about football and make up a game using a  permanent pen, my floor and some screwed up newspaper and tape.
Could you argue that he has used his imagination there?

And more recently there’s been the gaming. At first I was concerned about how much gaming he was doing and the effect it was having on him. But the benefits far outweigh my concerns to be honest. It’s become what he does for his ‘down time’. It’s his passion, and you know what, it’s actually surprised me how imaginative he can be on it. The possibilities with Minecraft are amazing.  He struggles in everyday life to draw any ideas he may have, even to copy an image. And he often can’t and express himself verbally or in his written work at school..... But he can create a whole village with shops/ houses/ animals and theme parks etc. He has also made some online friends who he chats to whilst he's playing, again which has opened up a new world that he feels comfortable in.  

And the latest thing that we have seen is texts and Emoji's.
He sent me an Emoji cake via text for my birthday last week in the taxi on his way to school, when he had been unable to say it in person at home that morning. He’s exploring with the creativity of using Emoji's, and learning there are other ways to express himself, be imaginative and communicate in a fun way without the pressure of one to one conversation.

 So yes my son has the label of Autism, and yes he struggles with imagination because of that. But if we think outside the box a little with our kids often we can find a way in by using their strengths and interests.  I accept he’s never gonna do drama or even be the class joker confidently at the center of the ‘in crowd’. But I am OK with that now, because he is!

I have followed his lead, and I am learning to see that my sons’ skills lie elsewhere. He feels the joy in playing with his dogs in a dog suit, he can problem solve by making a newspaper balls to play footy, and he can create magical worlds on Minecraft.

Each and everyone of our kids is unique in their own imagination, and have their own challenges to face. It’s a spectrum of uniqueness and a different way of viewing the world. So sometimes all we have to do is use our own imagination to view the world through our kids eyes, and see the wonder in their ability to think outside the box.


Mrs M X                                      

Friday 2 October 2015

One Little Boy and His Three Superhero Pets!

One little boy and his three Superhero pets!

As a child growing up back in the day I took for granted the fact that I always had lots of pets around the house. We always had a family dog and I had my own Rabbit that was my responsibility to care for. Now I am older I realise how lucky I was back then, and actually how much my pets helped me learn about life.  A love for animals is something that I have always carried with me, and when we had kids it was a no brainer really that we too would have a house full of animals like I did when I was little.
So we have a bit of a mad house really now, there’s the three kids, two dogs, a goldfish, two chickens, oh and my son has his very own pet Tortoise!

Like I said we were always gonna have a house full of pets, but what we have found over the last few years is how incredible our little furry friends really are. You see my son has Autism and struggles with relationships, and can often prefer to be by himself most of the time.  But the relationships he has with his pets are simply incredible. He seems to bond with animals on a whole other kind of instinctive level.
They are like little ‘Superheroes’ opening up the world to him with no words required

Let me explain.....
Meet Charlie

Charlie is our old faithful family dog. My son has grown up with him, side by side, together all the time. Every day when my little man comes home from school and dumps his school bags on the floor, he knows that Charlie will always be there waiting for him. No matter what has happened that day in school. No matter how he’s feeling, or what he has done that day. And without fail every morning Charlie makes his way to my son’s bedroom and plonks himself next to his chair.  My son is always anxious about going to school. And it’s almost like Charlie is there to reassure him just by being there with him.  Like he’s saying “It’s ok bud.... I’m here for you.”
Charlie teaches my son about love, friendship and trust. Those are Charlie’s superpowers!

Now meet Besty

Betsy is the latest edition to the mad house and as you can see from the picture, she is a mischievous puppy! She loves nothing more than to play ‘tug of war’ with my son on the floor, and my heart could melt when he rolls around with her laughing and barking as he pretends to be a dog. Sometimes she’s a bit... well ...’naughty’ but we always forgive her cos we love her so much (she’s partial to a smelly old slipper or two). And sometimes she does things she’s not really meant to but it’s our job as her family to teach her the right things to do (like not doing your business on the bedroom landing!!) But we don’t shout at her ‘cos it’s not her fault, she doesn’t understand the rules of our world yet. My son is absorbing all this subconsciously. Betsy makes mistakes, but it’s OK. Sometimes Betsy does things without thinking, but no matter what happens we’re all family, and we’re here for each other. We try not to get cross. 
She is also a little bit anxious about going to new places like the vets and to the park. But my son takes control and scoops her up saying “c’mon Betsy it will be fun” He is learning through her that new things can be OK.
For such a little puppy her superpowers are pretty big I reckon!

And finally let me introduce you to Turbo-teddy (he has ‘moves like Jagger’ this tortoise; trust me he’s fast on his feet!)

Teddy is my sons very own special pet. He’s a bit different to the rest of the pets we have because he’s not at all cuddly like the dogs. And he doesn’t really like to be fussed over too much. But he’s really special in other ways. My son loves to care for him. He baths him feeds him every day, and talks to him with such love and care when he handles him. Teddy is teaching my son to think about someone else. He has his own unique Tortoise needs, and it’s important that we care for him properly, or he will become sad and unhappy.

What incredible superpowers hey... to teach someone how to care for others, to think about someone else first over and above what you want. That’s what Teddy is helping my son to do.
So you see something magical happens when my son interacts with animals, and I intend to do everything I can to nurture that. I can only imagine what a chaotic and confusing world my son experiences everyday and our pet animals help him understand and process that whole heap of craziness.
Children like my son have a lot to teach the world I reckon. Because he shows us that growing and learning doesn’t all have come from textbooks and classrooms. It can come from the most ordinary and unlikely of places; like family pets, chewed up slippers, or trips to the vets.
My son is amazing, because he can turn the mundane into something wonderful and magical, that we could all learn from!

Now that’s a superpower if ever I saw one.

This was published on Autism 2/10/15

Thursday 1 October 2015

Autism and the delayed effect

Tonight my son walked through the door from school and immediately I knew. He didn’t have to say or do anything....I just knew!
Call it mothers intuition, or call it years and years of practice, but I knew something was wrong. It was the delayed effect. My son has had a tricky day at school. He has held it together for nearly 7 hours. He walks through the front door.....And bam!!
He’s somewhere safe, familiar and he can’t contain the pressure anymore.

It creeps out of every fibre of his being. His face is tense and he has red cheeks. His body is stiff and awkward. His words are fast and loud, and he’s agitated. He’s hungry, he’s not hungry. He wants a snack but not what’s in the cupboard.  So he gets angry and swears as he’s not in control of his body anymore. He wants to say hello to the dogs but their over excitement is too much for him, so he’s too rough with them and he gets cross with himself.  I try to ask him how he is feeling and it’s like there is a red fog surrounding him. He can’t process what I am saying.  His sisters walk in chatting and laughing. They sound like a crowd of people to him and he shouts to them both to be quiet. They snap back at him as only sisters do and wham....the volcano explodes. We have lift off.

Meltdown. There’s no turning back now. It has to all come out!
Then comes the exhaustion; for him, and for me. He can’t reflect on it because it’s all just too much. He just needs to recharge now, as do I. It’s so hard being a mum on the receiving end of the delayed effect as it holds no prisoners, and doesn’t care who it hurts in the process. So I can’t even begin to imagine how it must feel for my son.

As his mum I know there would have been tell tale signs throughout the day. But small clues that can be easily missed, as he would have been largely compliant, therefore no one would have realised there was any problem. But I know that as they day progressed his complexion would have become paler as the energy sapped out of him with each passing hour. He may have struggled to eat his lunch due to high anxiety. A nervous giggle would have squeaked out when his teachers tried to speak to him. He would have put his head down on the table during lessons, or possibly rocked back and forward on his chair to calm himself down. And as the pressure mounted there may have even been some finger picking, and sleeve chewing as the clock ticked towards home time. 

My son shows these signs of stress through his body language and gestures. He can’t always communicate his needs verbally, so they can get missed. And to be honest I don’t even think he is able to recognise this rising pressure himself until it’s too late most of the time.

The delayed effect is a very common challenge facing many children on the Autistic Spectrum. Some children are able to contain their feelings all day at school, with the teacher blissfully unaware that there is a problem. However the stress hormones are slowly building and building inside these kids. This creates a Jekyll and Hyde sort of situation that can put incredible pressure on families. Especially if the teacher doesn’t understand or believes what the parents are telling them. So let’s think about it this way for a minute.......

Imagine yourself as a bottle of pop. Your ingredients include; Autism, Sensory processing difficulties, ADHD, and a hidden speech and language delay. The worlds a confusing place and your difficulties are largely hidden to the wider world, not many people understand things from your perspective.

Your day......
Going to school is just one big worry for you... so give that bottle a shake!
You get to school and your teacher says “let’s start a new topic” ...what does that mean? ...give it a shake!
You don’t understand what you have to do...shake it up!
You make a mistake...shake, shake, shake!
The lights in class are buzzing, it’s annoying... shake it a little more!
It’s assembly. You have to sit still while your insides are wiggling and jiggling around....shake it up!
The timetable changes and it’s not maths like it should be, it’s now music... and again!
The taxi gets stuck in traffic, your late home, and the wrong radio station is on in the car... that’s a few more shakes!

You get home and the lid blows off with the pressure!! That's the delayed effect! Its a real thing... trust me. The times over the years I have felt so confused and isolated when teachers would say  to me “well that is a surprise we dont see any of that here at school.” Or I would hear “well he can behave for me, so maybe your being too soft on him”. I spent many a  sleepless night wondering if it was me. Was it my parenting? But I am his mum and my gut instinct is always right. I knew there was something my child was struggling with and all I had to do was really understand what his behaviour was telling me. My child explodes at home with me because I am his safe place. I am predictable and calm and he can really be himself at home. At home he is fully accepted.

So this tells me that there are many things that can be done in order to reduce this build up of stress hormones for children like my son, by making them feel more safe and accepted for who they are And that means really embracing their individual needs. Not just trying to fit a round peg into a squre hole. If you want to read more about the delayed effect you will find really useful threads on my facebook page -