Learning to celebrate my son's birthday.. his way not mine!

Presents and toys, birthday badges and party invites.

Balloons and banners, fancy dress outfits and homemade cakes.

Silly games of pin the tail on the donkey, musical statues, and ‘who’s the best dancer?’

A hot sweaty house full of giddy kids high on fizzy pop, cup-cakes and E-numbers.

Class friends having a ball as they fling themselves around on an oversized Minion bouncy castle.

And my son laughing and smiling in the middle of it all.

The playground mums huddled around a table laughing and gossiping about the antics of the chair of the PTA at last week’s school disco.

Enjoying a glass of wine and picking at posh nibbles whilst declaring that the diet starts tomorrow.

We air kiss as they leave, and we plan to arrange our next coffee morning with a text tomorrow as they walk down the driveway and clamber into their family cars.

I collapse in a heap on the sofa happily content as I watch him delve into his pile of pressies. Filled with a sense of relief that he has enjoyed all the fuss and that everyone had turned up.

This is what birthdays are all about for kids, aren’t they? We plan lavish events that make us go overdrawn just so we can boast about having the mobile Zoo at the local church hall for our little kiddo’s special day.

Unwritten protocol states that we have to invite the whole class to the party, even the ones we don’t really want to be there.

And then on the big day we pack our kids off to school wearing a flashing birthday badge holding a bag of goodies for them to hand out at the end of the school day.

Well at least this is what I used to think my son’s birthday would look like when I daydreamed about his future all those years ago.

In fact 12 years ago this very day… I was pacing the floor of the maternity ward waiting anxiously for the surgeon to give us the all clear to go down to theatre for my planned C-section.

I was 38 weeks pregnant, tired and hungry. But none of that mattered as were hours away from meeting our little baby boy. I couldn’t wait to hold him in my arms and my mind was full of all the possibilities that lay ahead.

Where have the years gone?  I for one am not the same person I was back then. And my little baby boy is now on the cusp of adulthood. Today my gorgeous smiley little man turned 12.

I quickly learned as my son was growing up that birthdays for him would not look like the images I had created in my mind. Don’t get me wrong I tried. For many years I forced him to conform to my idea of what his birthday should look like. I booked the church halls, invited the class and made the cakes.

But my son would cry, he would not want to join in and he wouldn’t want to open his presents. Then the invitations stopped coming his way, and the mums in the playground did not become the friends I had once expected they would.

We had become the ones that weren’t invited and those that did try to invite us didn’t know what to say to me when I had to make excuses for him not being able to go. When I would ask for the exact itinerary of the afternoon’s events, or even worse when he would get upset and cry in front of all his friends, they would look at me with a puzzled sort of confusion that I will never forget.

But I have adapted. I have had to learn that my idea of a perfect birthday isn’t the same as my sons.

So there may not have been a cake in sight today, or a donkey pinned on my living room wall for that matter. But that doesn’t mean he hasn’t had a nice day! He tucked into his favourite food for his tea with one of his closest friends, played multiplayer on his PS4 and snaffled down a whole chocolate brownie with delight.

There was no flashing birthday badge pinned to his school jumper or treat size chocolates being sent into his school this morning. But that’s OK! He woke up and his smile melted my heart. He enjoyed his birthday croissants and cup of tea whilst reading the texts from his family giggling at the lovely messages they had sent him.

There was no giant bouncy castle or dainty cupcakes today. But I’m OK with that because he was. He has bounced on his trampoline, snuggled in his new sleeping bag and brushed the salty popcorn out of his teeth with his new vibrating toothbrush (for longer than he’s ever brushed his teeth before… bonus).

The process of learning to accept this difference hasn’t been an easy one I have to be honest with you. Sometime I have pangs of thinking “if only”...but then I see his happy face, and get such joy from seeing him flapping with excitement as he slides into his new sleeping bag - and  those feelings slip away to be replaced with all-consuming pride. His joy of life is infectious at times like this.

So now I find myself giggling at the things I wrap up as presents sometimes (ice pops, popcorn and shaving foam spring to mind). But it’s what my son loves. It what makes him tick so why not?

And part of my journey as a mother is learning that my son’s journey is his own. It’s not mine, I am merely along for the ride. Its his day, not mine.

So this weekend instead of booking a mobile Zoo for the whole class, I am taking my little man to his favourite Zoo for the day. So he can spend 9 hours doing what he loves surrounded by his favourite animals.  Free, happy, flapping and loving life!

Unwritten protocol, having to do what others think you should, giddy kids high on sweets and a mountain of crappy presents that you end up donating to the Christmas fair kinda go out of the window when you have a child with autism, and I FOR ONE AM GLAD OF IT!

Happy birthday darling boy xx

What to do if you have concerns about a child in your classroom

I have been privileged to spend many years of my career working within the primary education sector and early years settings to support staff who work with children on the autism spectrum. It can be one of the most rewarding jobs and yet also one of the most challenging too, as each individual child on the spectrum is unique, and therefore they all have such different needs.

Add to this the fact that many children’s challenges are hidden from the outside world and it becomes easy to see why people can focus on the things children with autism can’t do, their deficits if you like. Instead of us looking at the child behind the behaviour, we can find ourselves stuck in a cycle of negative reaction strategies that actually serve to aggravate the child even further.

Many approaches I have seen over the years tend to ‘treat the behaviour’ and focus on the child’s problems. But we should be taking the time to find out what makes these very special children tick, what their strengths are, how they learn, and how we can make reasonable adjustments to the environment in order to meet their needs.

So often children on the spectrum are treated like round pegs in square holes. Our environment and demands to conform to our view of the world can chip away at them and doesn’t take into account their individual needs.  

Or to look at it another way - imagine holding a ruler in your hand. You can bend it this way and that way time after time…but eventually the plastic will become overstretched, worn out and one day it will snap.

Children with autism can quickly become overwhelmed and over stretched with their learning environment if they are constantly having to bend and mould to fit into our world. In the long term this can lead to anxiety creeping in and taking hold of them, which is proven to drastically affect their mental health as they get older.

So over the next few guest blogs for Kathy I will be looking at how we can effectively support children with autism in our pre-schools and classrooms. From early intervention; to liaising with parents, understanding behaviour and sensory needs to language development and communication. I will talk through my experiences, and share with you the things that have worked well for me, and also those things that didn’t work so well! And to be honest, sometimes the things that have taught me the most have been times when I have got it wrong!

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So to start with I will look at what to do if you have concerns about a child in your setting -the key behaviours to look out for, and then how to broach any concerns you may have with parents.

The National Autistic society state that young children with autism may exhibit a range of behaviours that could include -

·     difficulty relating to others and making friends

• difficulty in communicating (some children may not talk at all)
• being unable to engage in imaginative play.  

• obsessions
• fears
• a lack of awareness of danger
• ritualistic play and behaviour
• inappropriate eye contact
• hypersensitivity to sound, light
• spinning objects
• hand flapping.

(National Autistic Society May 2016)

However not all children with autism will display all of these behaviours. Often children on the spectrum can mask their difficulties for fear of standing out. This is especially true with girls. They can often blend in very well and follow the lead of others to get through the day and can be very sociable with their friends too.

Many young children on the spectrum will have some form of communication and language difficulty. Some children may never use spoken words or they can develop language later than the rest of their peers. Other children could use echolalia to communicate (where they repeat words and phrases they have heard, sometimes in an accent). And some children who have Asperger’s can have what appears to be good level of language, yet they may not necessarily understand everything that is being said. They can take things literally, out of context, or not always see why your joke is so funny.

There are loads of things we can do to help children on the spectrum ‘find their voice’, and this is vital whatever level of language they have. As just because a child doesn’t speak, it doesn’t mean they don’t have anything to say. I will look at possible strategies another time.

Lots of children with autism may also have difficulty with ‘sensory processing’. Simply put this means they can smell, hear, and feel things in a different way than we do which can lead to them being overwhelmed by their environment, or even leave them seeking sensory input. This can make them appear hyperactive or they can’t sit still. But young children won’t always even realise what is happening to their body, so it’s our job to watch what their behaviour is telling us instead of labelling them as a naughty child.

Working with young children everyday means you are in a unique position to be able to make a difference to children whether they have a diagnosis or not. As early intervention and support is vital. I have found that over the years I have always followed my gut instinct. Sometimes we just know, if a child isn’t hitting their milestones and there is something just niggling at you. Speak to your line manager/ SENCO or class teacher.

And then it’s vital to open the lines of communication with the child’s parents. Here are some tips…

·        Keep calm and friendly -This can be very daunting to have to do and you may worry about what they will say in response. But chances are they may have been worried about their child for a long time already, as no one knows a child better than their parents. They may have also been expecting you to raise concerns at some point.

·        If they don’t react well- Keep calm and polite, they may just be in shock and it could be a defence mechanism. Have the support of a co-worker there with you, and give them time.

·        Keep it informal -So ask them to come in for a chat, offer them a drink and don’t sit around a desk like your planning on interviewing them. Believe me they will be more nervous than you and probably emotionally drained with worry themselves.

·       Keep it private, and positive where you can - Make sure it’s done in private and that you have lots of positive things to say about their child too. There is nothing worse as a parent than sitting around a table with professionals telling you all the things your child can’t do, and how he causes them such a problem. As a parent that is heart-breaking to have to hear.

·        Keep an eye on the time and don’t talk about their child if they are in the room with you -Keep it brief, to the point and informative, offer childcare if possible so their child isn’t in the room listening to the conversation. Try not to give too many opinions and stick to the facts as you see them. And most importantly keep it friendly. Parents can easily become defensive if they sense in your tone that you are getting at their child in some way.

·       Be prepared -So maybe prepare some notes that include their child’s strengths, and how he overcomes any challenges he seems to face. For every negative try and give them two positives so they don’t come away with a feeling of dread about their child’s future. But be honest with them as the difficulties you have noted about their child do need to be addressed in a sensitive manner.

·       1) Discuss the issue 2) Provide possible causes and 3) Plan strategies that could help-

So for example -  

1)     Discuss the issue- You could say you have noticed that their child can find Storytime a little tricky and can become a little wriggly and distracted
2)      Follow that up with what observations you have done- You have observed that it could this be because they are struggling to follow pace of the language, or maybe they may need a firm back to lean on to feel more comfortable whilst sitting, or that maybe 6 OR 7 minutes is enough for them to sit for and any longer than that can cause them to lose focus
3)      Finally discuss the strategies you have put in place- So could say you that have you have implemented strategies such as a fiddle toy, provided visual aids or puppets to go with the story which helps their child to engage. You could have tried a chair or cushion to sit on instead of the carpet, and you now ensure the carpet session doesn’t exceed 7 minutes

Then once the lines of communication have been opened, keep those links going with weekly ‘catch ups’. It doesn’t need to be much, but a discreet little thumbs up at pick up time, or a little note in their reading book can make all the difference to anxious parents. Because no matter what the outcome is, the parents will need your support and help in coming to terms with this unplanned reality they find themselves in.

Next time I will look at how we can adapt the early years learning environment to accommodate children on the spectrum. Including how the layout of the classroom can affect a child, how visual displays can aid communication and the use of timers can help children access learning.

Mrs M

This blog was written as a guest post for Kathy Brodie (Early years teaching and coaching) and can be found here on her website

http://www.kathybrodie.com/guest-post/supporting-children-autism/

Just keep swimming....

“Just keep swimming, just keep swimming, swimming swimming,” who have would have thought that the Disney character I find myself relating to isn't a princess trapped in a tower but a blue fish with a memory problem! 

As a mother to a child with Autism believe me when I say that I often feel like I’m swimming against the tide.

You see support services don’t always come easy for children like my son, it can be a daily struggle getting the right help. And our family life is anything but ‘normal.’ We have even been known to clear a restaurant on occasions. So I know a thing or two about the judgemental glare of society and the added pressure this brings to families like ours.

I have to admit that sometimes it can all just become too much and I feel like I’m drowning. I wonder where I am going to find the strength to fight another battle, never mind keep my head above the water.

And ironically it ends up being the most mundane of things that usually makes me sink - like the washing up for instance!

Last night I walked into the kitchen to face a ‘mountain’ of dirty dishes. I took one look at it all and immediately felt defeated. Defeated by the chipped bowls and coffee stained mugs, and defeated by the never ending stream of crap that seems to come my way. So I slammed the door muttering some obscenities that I won’t repeat here and stomped I off to bed in a right old sulk!

But do you know what, when I tentatively opened the kitchen door this morning that mountain of dirty dishes wasn’t half as bad as I had thought it had been. It was just my mind that had been playing tricks on me because I’m a pessimist you see - always thinking the worst.

What I should have done last night was said - so what!

It’s quite freeing really, going with the flow. And when I think about it, more often than not a positive that can be found in most situations. Even leaving the dishes!

So what if I go to bed with pots in the sink, in the grand scheme of things does it really matter – No is the answer to that, because my hubby might give in and buy me that dishwasher I’ve been after for months if I let them pile up. Tactics that is!

So what if I’m not one of the 7 million people watching Sunday night feel good TV, I have to watch it on catch up TV because my son is always too anxious to settle down on Sundays - I can fast forward the ads when I watch it later in the week anyway = happy days.

So what if my morning shower happens at 10.30 pm at night because my mornings have to focus on getting my son to school with as little stress as possible, not the state of my hair  -  I mean I was never a morning person anyway.

So what if the hubby and I have to book a day off work to have date afternoon because we can’t get a sitter at night - We can often get a good two for one deal midweek at the local Harvester pub.

So what if we have to take family occasions in turn as my son can’t cope with big family gatherings – It means we get to spend some quality time with our daughters when it’s our turn to attend, and the spouse at home gets remote control rights all evening. Bonus!

So what if we holiday in the same place year after year because my son can’t cope with uncertainty – At least that way we always know what to expect so there are never any nasty surprises or cockroaches under the bed.

So what if my shoes of choice are pumps and not heels in case I have to dash to intercept a child or remote control from flying across the room! - I can’t be doing with blisters at my age now so its comfort all the way for me.

So what if I have to be home by 10.30pm on a night out as my son worries about me if I’m not back by the time the news has finished - As I have gotten older I am glad of it to be honest,  I would much rather be tucked up in bed with a Horlicks anyway.

So what if I had to give up my job to care for my son - One door closes another one opens as they say. I would never be sat here talking to you if I was still at my day job.

So what if the most communication I can get out of my son is via text because he finds talking about how he feels face to face so hard - I can screen shot his messages and keep it forever as a treasured memory, and use it to embarrass him at his 18^th.

So what that I spend half of my day filling in forms and phoning people to get my sons needs met - If I’m honest it’s making this mama bear all the stronger for it. Grrrr!

So what if my son only wears certain socks due to his sensory issues, when we find ones he likes we buy 5 pairs – And that means that I don’t have to spend hours hunting for those odd ones that the resident sock monster likes to hide from me.

So what if we have watched Harry potter 100 million times as it’s my sons’ special interest - At least now I know what spell to use in case of an invasion of Demetors – “Expeliamus!”

So what if my son has to go to a special school as that’s where he is best placed to learn and grow, he’s happy and accepted and feels like he belongs there –  And after all that’s all we ever really want for our children isn’t it, whatever school they go to.

So what if I lose some friends along the way due to our restricted social calendar - True friends will never leave my side and I would rather have 2 or 3 true friends than 10 hangers on who just want me for me drunken handbag dance moves.

So what if we are not a normal family - 'Who needs normal anyway!' - I’ve learned not to believe Facebooks perfect family portrayals. Everyone has their own story and challenges no matter how perfect their lives may appear on screen.

And finally the biggy, so what if my son is Autistic - He is still the same little person, no matter what.

The diagnosis may have come as a shock to me, and even knocked me sideways for a little while. But my son is unique and wonderful and I’m not going to let other people’s judgement affect how he feels about himself. And so what if people don’t agree with my choices, they are not living my life and don’t have to walk a day in my (comfy) shoes.

So maybe next time if you feel yourself drowning, try and say ‘so what’ to yourself and swim away. Swim away feeling the freedom of being carried by the tide for a little while.  Picture yourself floating off on an inflatable bed, cocktail in hand, and humming to yourself like the little blue fish “just keep swimming, swimming swimming.”

Us mums don’t always have to swim against the tide you know, it gets exhausting after a while. So from one blue fish to another – “when life gets you down, do you know what you gotta’ do?”

                                        Just keep swimming, swimming swimming!

This blog was written for Special Needs Jungle. The original post can be found here- http://www.specialneedsjungle.com/so-what-i-cant-always-swim-against-the-tide-with-my-asd-son/

Being a mum is a lot like being a roadside recovery...

Imagine your body is a car engine. Sometimes it ticks along quite nicely. Cruising down the smooth road with no bumps, pot-holes or distractions. When your engine is purring like this you can relax and take in the view, enjoying the ride as you go.

For my autistic son this kind of road is his comfort zone. On this road he is at his most independent and communicative. He knows where he is; its safe, familiar and predictable. He needs nothing more from me than simply just knowing I am there in the background should he need me. Like a roadside assistance card in his back pocket. He knows I’m there to fall back on.

Now imagine that you didn’t sleep well at all last night and you’ve been awake for hours worrying about something, so your engine is running a little sluggish today. The road has become harder to manoeuvre and see your way past any obstacles. The bright sun could be dazzling your vision or the traffic may be building up around you, and you can’t see your way through. Your engine begins to overheat and you need help.

When this happens for my son it becomes harder for him to be independent. His vital functions start to slip, and his ability to communicate steams away from him. His engine overheats and the alarms set off telling me there is an unseen problem occurring. My role as his parent then becomes like the recovery truck that restarts his engine. I patch him up and follow him home to make sure he arrives safely. Or I become the on board Sat-nav that talks him through the busy city centre in a calm voice to get him home in one piece.

Finally imagine yourself speeding along an unknown road as you get faster and faster and your brakes won’t work. ...you can’t stop yourself...you’re no longer in control of what’s happening to you or your engine, and panic sets in. You feel like you could go over the edge of the cliff at any moment. Or your engine becomes so overheated that you can’t carry on anymore, you’re at crisis point and all functions shut down.

For my son this is where I become the emergency services that recover him and get him to safety. My tool kit of love, instinct, and resources enables him to scramble to safety and begin to recover. I carry him home and protect him from the glares of ignorance from rubberneckers that pave the way on this road. I forward think, and helicopter around him ready for the explosion that could come at any second. On high alert (just in case) at all times, my adrenalin is pumping and I can feel his pain as if it were my own.

This is our daily life. The road that my son is on from minute to minute dictates how his engine will cope. The environment is the single biggest factor that controls his ability to function in our neuro-typical world. He has good days and bad days, and so I float in between being the recovery contact card in his back pocket to being his blue flashing lights of recovery from hour to hour and day to day.

But sometimes as a family we step out of our comfort zone for more than a few hours - like we did this week on our family holiday.

A week on an unknown, unpredictable and bumpy road.

So this meant that my son’s engine was on overdrive for not a few moments, hours or even days. But for a whole week. His little engine was working really hard every second of the day to cope with every new smell, sound and sight he faced. He coped so well with it all but as a result I was on call should he need me (on high alert) 24, 7.

Unlike when we are at home and he is in his comfort zone, on holiday I didn’t have time to build up my energy and recoup myself. So by day 5 of the holiday both my son and I were tired.

Tired of being on high alert all the time.

I became aware that I was becoming snappy with him, and finding myself wanting to withdraw more and more. I got cross with myself for feeling like I needed a break. But simply put, I needed some roadside recovery myself. My own engine was running low and I needed a top up too.

You see being a parent to a child with additional needs involves constantly weighing up how far to stretch his comfort zones whilst at the same time making sure all my children are happy and loved for who they are. I spend a large portion of my time firefighting potential triggers that may arise and I question myself everyday to make sure I put all their best interests first.  I try to make sure I never push my son too far, but just far enough to stretch his experiences of the big wide world enough to enable him to be as independent as possible as he is growing up.

And I suppose its only natural that all this forward thinking will take its toll on me mentally. I realised that this is why I had become snappy. I had reached my limit and needed a break. Just for a couple of hours to refuel the tank and get back on track myself. I mean how can the roadside recovery help if its own engine is burnt out?

So just as I recognise and meet my son’s needs day to day, I too need to learn to recognise my own engine a little better too, and do something about it before I overheat.

So my advice to fellow parents is this...find something that can be your roadside assistance card.

Whether it’s a coffee break, a TV programme you can escape into, or family member that can babysit while you have a bath in peace.

We all need a little help sometimes.

We’re all human and the bumpy roads we all find ourselves on can take its toll - if we don’t take the time to have our own recovery procedures in place every now and again.

I am the fixer upper...the one who makes it all better...I am the cleaner of the puke!

I have been wading my way through this motherhood malarkey for the last 14 years now and I thought I had pretty much seen it all. The tears and tantrums, the snot and nits, the poop and sleepless nights. I've been there and got the T-shirt! And glamorous it 'aint.

I like to think that I take it all in my stride and do what needs to be done. It’s what we do every day isn’t it us mums?

However last night I have to say that for the first time ever, I had to psych myself up to deal with what came my way on the ‘being a mum with poorly kids night shift’.

You see you never quite know how these nights with poorly kids will go do you....

It almost certainly always involves a hot sweaty child creeping into your bed and nicking all your duvet covers, while you painfully watch the minutes tick by on the alarm clock fighting to drift back off to sleep. Whilst clinging onto the edge of the bed huffing and puffing as you get more and more irate about how your hubby snores through the whole bloody thing.

And most of the time these nights also involve some kind of bodily fluid being dramatically expelled from your poorly little person. That’s pretty much a certainty really isn’t it…whether it’s a wet bed, snot, a nose bleed or the old favourite vomit at 3am…it never ends well, and is always guaranteed to be messy!

And occasionally it will involve creeping downstairs in your nightie to get the Calpol from the kitchen cupboard in the dark, trying not to wake the rest of the house up. Only to swear in pain when you stand on the remote control that one of your little darlings has left on the living room floor.

Hindsight is a wonderful thing and I should have seen the signs coming thick and fast yesterday telling me that I was in for a rough night. But to be honest my son is very rarely the one that ever gets ill in our house, so I was totally unprepared for what was heading my way!

You see my poor little man had been complaining of having a headache for most of the afternoon, and his youngest sister has been off school all week with tonsillitis. The clues were there that I was in for a long night weren’t they! But silly old me didn’t see it coming. 

Stupidly I went to bed after having a couple of glasses of sloe gin (it was Saturday night after all). I had popped my head around his bedroom door before I went to bed myself, and all was quiet. He was fast asleep. So naively I assumed that all would be well until the next day. Think it might have been the gin that relaxed me that little bit too much!

As I was awoken at some ungodly hour by a feeble “MUM, MUM” coming from his room. I dashed out of bed and ran in, turned the light on and I froze. I actually froze on the spot.

Let me set the scene… my little man sleeps in a high metal framed cabin bed. He has his gaming chair and PlayStation all set up at the desk underneath, as well as his turtle table where his pet 'Teddy Tortoise' happily resides. He sleeps above all this on his cabin bed and has ladders to get up and down - as it’s pretty high!

Now my poorly little man must have woken up and needed to be sick. So of course he had leaned his head over the side of his bed and well, all hell had broken loose let me tell you! It must have been vomit of the ‘projectile variety’ I can only assume. And as it had been evacuated from such dizzying heights (there’s no polite way to put this) it had splattered onto every surface, crevice, nook and cranny in his entire room. Headphones, turtle table, gaming chair, chest of drawers, walls and carpet, the lot!

It was 'vomit Armageddon'.

His poor pale little face sadly looked down over the sides of his bed at me, and I am ashamed to admit that I was frozen to the spot. My sleepy senses were bombarded with smells and sights no mother wants to see after a few too many gins! But in my defence this was enough to test the stomach of the sturdiest mum in the middle of the night, gin or no gin, trust me.

“My poor baby” I spluttered out eventually.  

“Sorry mum” he sobbed.

My heart melted and I felt awful.

“Are you going to be sick again?” I asked.

“I don’t understand, how do I know?” he said.

It slowly dawned on me that his experience of feeling sick and knowing that he needed to go the bathroom was something that he may not be able to plan when he felt so ill, or even recognise like we do. He couldn't help it poor kid.

It was time for me to man up and face the battlefield of vomit that lay ahead (and above, and on the sides and in-between my toes).

So I counted to 10, grabbed as many cleaning implements as I could lay my hands on and did what every mum does…got stuck in with the clean-up mission, whilst holding my breath for as long as I could and trying not to slip over in the fallout!

An hour later, I left my little man sleeping peacefully whilst clinging to the biggest bowl I had been able to dig out from my baking cupboard. And stinking of bleach and beyond exhausted I then slowly crept back into bed while my husband heaved back over to his side of the bed with a grunt.

Scrubbed and clean I lay there listening to the hubby snoring and the birds singing outside. All was quiet again… like nothing had ever happened. I had done it. My little man needed my help despite my little wobble I had done it.

Because no matter how messy things get, I am his mum and I will always be there for my kids no matter what time of day or night, no matter what the issue,  and no matter how much mess there is that needs cleaning up.

More than that I am my sons’ safe place. I am the fixer, and the one who makes it all better.

I am the cleaner of the vomit!

I may feel overwhelmed at the task ahead sometimes, but after a few deep breaths us mums can tackle anything that’s thrown at us can’t we!

We may have more wrinkles, grey hair and dark circles around the eyes than we used to, but I wouldn’t have it any other way. And I bet you wouldn’t either! Because my kids are worth every sleepless night and every midnight scramble for the disinfectant.

So bring it on I say!  

The joy of motherhood is the unconditional love and the devotion that I feel for my children, which is enough to drive me on to clean any amount of bodily fluid at 3 in the morning I can tell you.

So ‘vomit Armageddon’ I laugh in your face and say “come and have a go if you think you’re hard enough!” This momma can take you on and more, any day of the week! (Well maybe a night off tonight would be great if you could be so kind).

Mrs M x

How daily life drains my sons' engine until it's empty.

How daily life drains my sons' engine until it's empty!

Hi folks, I feel like I need to say sorry as I have neglected you all somewhat over these last few weeks.

But I think I needed a bit of a break as I had done so much writing for other people in preparation for autism awareness month, that I kind of burnt myself out really. I had written eight different pieces in one week as everyone wanted it in by the beginning of the month. It was great and I really enjoyed every second of it. But when I had stopped to catch my breath, I think my brain simply sighed and said “no more!” The fuel tank was empty. I had become sick of worrying about how well my various pieces were being received, whether or not people liked my work, and how many shares it was getting etc....that I was driving myself mad with it all!

I just felt like it was becoming another thing to worry about, rather than something I was doing for pleasure.

So my natural reaction was to shutdown, switch off the engine (and the laptop) and focus on me and the family for a while. It meant that I could refuel my tank. Does that make sense?

I didn’t know how long it was going to take, a few days, weeks, or months maybe? But I assumed I would just know when I was ready to return. And as it happens, its only been a couple of weeks that I have had off now. And I have to say that I actually feel much better for it.

So today was the first time I have felt like picking up the laptop. 

And it’s kinda got me thinking... is this how my son feels when he becomes so overwhelmed with stuff that he just switches off, removes himself from our world and needs to be by himself?

 And he can often take several days to recoup after he has had to work hard in a situation. Almost like he’s refuelling his reserve of energy. Filling up his own tank.

Take this weekend for example. It has been my mum’s birthday celebrations, and we have had several days where things have been out of sync at home as a result.

On her birthday we went to her house for tea. All our extended family were there. We had singing, balloons, cake and lots of laughter. Little man found it tricky but he tried really hard, and he got through it for her and she was so proud of him for trying so hard.

But what we couldn’t see was that a quarter of his tank had been drained as a result.

Then the following night I was up until late making decorations for nannas party with my sister.  The house was full, bedtime got pushed back late and tea was a takeaway that hadn’t been planned. Again he coped really well, and got through all the changes.  

But as a result his energy tank had been drained a little more.

Finally it was the big party night at a hotel. We checked in, and we decorated the room with balloons, banners and pictures. He then had to sit still surrounded by people he didn’t really know, eating a meal at a table he has never sat at before. Contain his anxieties. Leave the comfort of his bedroom. Not play on his PlayStation like he usually does on a Saturday night. Smile at people he feels unable to talk to. Pose for photographs. And sleep in a strange room, in strange bed with lots of new smells and noises to keep his senses on high alert all night - so no sleep.

Inside his tank was spluttering on empty. It had taken all his energy to get through it all without having meltdown that when we got home …. then came the burnout.

His tank was empty. His tolerance was low and his anxieties were raw and seeping out through his body, unchecked and unregulated because there was simply no fight left in him.  

We got home and he didn’t want to move. He couldn't cope with any demands on him at all. And that was fine. So he spent two days recharging.

But the problem came this morning when it was time to go to school. There were tears, huge anxiety, refusal, heightened sensitivities and one guilty mummy forcing her child to school in tears.

It’s not that he doesn’t like school, I know he's happy there. It’s just that he wasn't fully recharged from working so hard to be part of our world over the weekend. And as a result his anxieties were still high, his senses were still super sensitive and therefore his ability to cope was still drastically reduced.

And he knew that in order to get through the day ahead in school, he was going to need to use more energy and effort from his tank. The tank that wasn't ready to make that journey yet - because it was still running on empty.

You see every fibre in his nervous system is so fragile that it takes so much unseen effort to fit into our world, and control himself when being bombarded by sensory overload, that its going to take time to repair and recharge. And today, well he wasn't quite ready. So his defence mechanism this morning was to go into ‘flight or fight’ mode to protect himself. His refusal and panic this morning was his way of telling me it was too soon. 

Just as I didn’t know how long it would take me to feel recharged enough to put pen to paper again, for my son it's no different . Who’s to say how long his body will take to recover and recharge fully? Not me that's for sure.  And I don’t think he really knows himself to tell me. He just feels better in his own time, and I have to follow his lead. Today I pushed him too far because I felt the pressure to get him into school.

But we should never take for granted how hard it is for kids like my son to fit into our world. And how long it takes for them to recover. I mean in my case it took several weeks until I felt ready to do something I love – writing! Never mind facing a day at school which is full of challenges and struggles.

So imagine how hard it must be for children on the spectrum that often don’t even fully understand why they feel like they do in the first place. They need us to be patient and understanding and to look beyond the behaviour to understand what they are trying to tell us.

Their engines have to work so much harder than ours just to keep up, and as a result that must drain their energy and tolerance levels so much faster too. So it’s understandable that they will need that bit need longer to recharge fully and recover.

Time and patience is what they need to refuel.... well that and a whole heap of love!

That is why when my little man walks through the door tonight, I will make sure I tell him how proud I am of him for getting through the day. I'll make his favourite dinner, and then I'll  give him the space and time he needs to top up that tank!

Mrs M x

Girls

Girls and autism

I often get messages from mums wanting any information I may have about girls and autism. So I have pulled together some useful links to support groups/ books/ videos and resources here in this blog.

Useful books

     

Parenting girls on the spectrum             

Girls growing up on the spectrum

Girls under the umbrella...

There are many useful books that can be found to help you navigate the minefield of advice. Here are a small selection, please do let me know if you have found a really insightful book and I will add it.

Aspergers and girls

The girl with the curly hair

I am an Aspie girl

Videos

Ask an Autistic YouTube channel 

(This channel has many topics that are worth watching relating to most aspects of autism).

                                                              

                                                             Autism in pink documentary

                                           

                                                                 

                                                                   Tony Attwood

My story CBBC

Girls with autism ITV

Useful resources

PDF file

Social media / blogs to follow 

Autistic females .com

Carly's Voice

Facebook Autism girls

The girl with the curly hair

Autism collage connection

Yellow ladybugs

The curly hair project

(Autism acceptance month A-Z)

Girls with autism poster (Little black duck)

Top tips (Sue Larky)

The education of girls with an  autism spectrum condition - the hidden curriculum PDF

Girls on the spectrum Autism toolkit