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.