Just having a reality check, 18 Christmas’s with my little family have past by and my babies are growing up too fast.

Life is busy, life is chaotic and my life is definitely not that Walton Family life that I had pictured. Life is hard, bloody hard! If it’s not the children generally , it’s their disability making it tough , if it’s not that, it’s another school fight, and just when you you think it’s sorted someone in the family or at work kicks off, you get over so many hurdles in life and just when you think it’s all fine and dandy you’re reminded of those not existent finances!

Yep, life is definitely sent to try us! But remember, everyday memories are made, some good, some bad but everyday no matter what, these memories makes up part of your babies childhoods, something they will remember forever!

All children, only ever want to feel safe and loved, no matter whether they show it or not. They drive us to distraction most days and cause stress and tears but before you know it, it’s over!

Tuck your kids into bed each night, give them a kiss and tell them you love them, because no matter how hard life is, childhood doesn’t last forever.

Through those darkest days, hold on to those happy memories and put your time and energy making more.

Christmas was always full of surprises when I was a little girl, that was half the magic. Would Santa get that special present that I was so desperate for? The excitement of opening my presents on Christmas morning with my big sis, taking it in turns to each open a present. We used to spread the opening of presents throughout the day because we had so many. Santa presents were always first then our main present from Mum and Dad then presents from under the tree from family and friends after lunch. Naturally, I wanted to pass these traditions on to my own children. Well I tried and tried but sadly year after year ‘Merry Christmas’ became ‘Meltdown Christmas’, which progressed into ‘Massive Meltdown Christmas’ and quickly transformed into ‘Mega, Massive, Meltdown Christmas!’ Aiden could not cope with the surprises, the waiting or the general change in routine.

After many years of getting it wrong and dreading Christmas altogether I finally accepted that Christmas would just have to be different to the one I had growing up.

I learned that the surprises were for my pleasure, not Aiden’s. The thought of a stranger coming into his room at night to deliver unknown presents caused him huge anxiety. And waiting in turn to open a present, with the added pressure of possibility not wanting that present was just too great.

Aiden never understood why he received so many presents that he never asked for. Most kids would be happy to receive more presents! Not Aiden! To him, if he hasn’t asked for them, it’s because he doesn’t want them! He wasn’t being ungrateful, he just didn’t get it! Consequently this meant Aiden would unwrap his presents and place them very neatly into the plastic tub and keep them safely under in bed. They would sit there all year untouched until I had the annual bedroom sort out. What a waste of money!

It took many years to learn (I’m a slow learner and a little bit stubborn) but eventually I realised once he had the presents that he had asked for, the ones, I new, he really wanted, yep, and that special one that I always kept till last, he began to relax. Why didn’t I learn sooner, who knows? I promise I wasn’t trying to torture him on purpose – but that must have been what it felt like for him!

We mastered the fear of Santa by ensuring he left presents in the lounge. Aiden would wake up on Christmas morning and open them instantly ensuring they were only presents he had requested. We then gave him that special present from us straightaway – we wanted some credit – can’t have Santa taking all the glory!

Aiden was then happy and would go off and have his routined, two bowls of cereal for breakfast while we all continued to open presents with the other kids.

The presents ‘under the tree’ never made it ‘under the tree’ and were just opened when they were received. This helped reduce the anxiety and gave him one less thing to worry about.

Concepts, reality and make believe for Aiden are very difficult to understand and Christmas has them all.

We try to explain to our kids that Christmas is a time giving and for thinking of others, this is something that does not come naturally to Aiden, he can not put himself in someone else’s shoes, he’s not interested in making someone else happy and unintentionally comes across as very self centred.

He is not affectionate in any way so that Christmas spirit that we all hold this time of year, is yet another reason for him to feel on edge. He never knows when someone is going to dive in with that special Christmas kiss!

Santa – Well he’s still alive and kicking in our house! Aiden, who’s now 18, cannot lie, so my biggest fear, with him having younger siblings, was always that Aiden wouldn’t be able to keep the Christmas magic going. However, it turns out, it’s now my younger ones who are keeping the magic alive for him. Maybe it will be this way forever? He just doesn’t understand the concept. Aiden understands people who dress are not really the person they are dressing up to be, however, he says, they are still a real person! So, sure enough this year he put out a mince pie and milk for Santa.

Christmas for us is still regimented but so much easier. We put the lights and tree up and take them down on a set day, presents for Aiden’s are no surprise, Aiden eats breakfast, lunch and dinner at the normal time, regardless of how many selection packs he’s eaten in between and 2 days before Christmas we double check what the most important present is!

To others, it must look like we let Aiden do what he wants and we exclude him from the family!

To us, what we do works and it means we CAN have a family Christmas! OUR family Christmas!

When you say Superhero, everyone envisages a heroic, handsome or beautiful caped idol, who of course has a super power!

Um, I’m not sure I fit the bill!

Or do I?

Let me take you back to those Primary School days. These were the days when I lived on the edge of my seat, never fully being involved in my day to day tasks, and instead just waiting and dreading my phone to ring!

The ‘can you come and collect him’ phone call, the, ‘we need an urgent meeting phone call’, and eventually, the, ‘exclusion’ phone call. Everyday I would await the call just praying that he hadn’t hurt, yet another child.

I even changed my ring tone for the schools number to, ‘Help’, that famous song by the Beatles, in the hope that I’d feel less nervy! (It didn’t work, but everyone else thought it was funny!)

I remember, to well, those playground days, the death stares and whispers from the other parents. The smiles through gritted teeth, as they steer their child in the opposite direction.

The end of the day, ‘finger point’, from the class teacher, “Mrs Coxhead, can I have a word”. (And ironically, these were good days! We’d made it through to the end of the day!)

I would see all the mums handing their children party invitations to hand out, knowing full well we would never receive one.

Away from school, we’d attempt the ‘normal’ daily events, like shopping or going to the park, and in true Aiden style, he would lay on the floor screaming, or throwing everything and anything in site – I just hoped it wasn’t a smaller child who, just happened, to be tottering by at totally the wrong time, or an inquisitive dog, checking out what all the noise was about or worst of all, the ‘well meaning’, old granny (you know the ones!) but no matter what the scenario, the stares, comments and judgments would flow freely.

Inside, I was crushed! I just want the ground to swallow me up! Yep, the drain looked like a great place to be right now! And everyday I would vow never to leave the house again!

Then, one day, it was probably one of those days when everything that could have gone wrong, did go wrong, and I was well and truly in the gutter, I realised – Actually, all this shit was for a purpose! The purpose was ‘training!’ Yes, I was in training, training how to gain my “Super Power!”

“KER POW”…

Mission Accomplished!

Suddenly, I grew… (some say bollocks!) I was thinking more like a shell! I developed a Super Strength, Super Speed and Super Humour! Yes you got it –

I became a ‘Ninga Turtle!’

You may laugh! You may think I’ve gone mad! Um! Maybe I have, just a little, but it’s true!

I had spent my life living in what felt like the sewer (just like the Ninga Turtles) and without my Super Powers I couldn’t get out.

My shell was my new found protection from those judgmental onlookers. Even if, inside, I was crying, my protective shell kept me safe, bold and brave.

My Super Strength gave me an inner force to fight for my son. I had the strength to fight the education system, stand up to the discrimination and for once, be proud of my son!

My Super Speed, well, that was always more tortoise than turtle! Probably all those Pizzas! (The Ninga Turtles ate them!) But it gave me the energy I needed, not just survive, but actually enjoy Aiden.

However, I believe, it was the Super Humour, which is what got me through each day. I learned to see the funny side, even when, it probably wasn’t really that funny.

Life as a Superhero was so much easier! I was always kind and polite, but, I stopped caring about what other people thought, if I thought something needed saying, I would just say it and if I thought something was right for Aiden, I did my dammed hardest to make sure it happened.

It dawned on me that no one else was going to fight for Aiden like I would, no one else knew Aiden like I did, and no one else would put Aidens best interests before anyone else’s!

I had to be his advocate.

A Ninga Turtle? A Superhero? Dress it up how you like – but your it’s your Mind Set that counts! A positive Mind Set is everything!

Believe in yourself!

and

Believe in your child!

People will always make judgments we can’t stop them but we can hold our head up high and think NINGA!

A few days before Aiden turned 7 months old, he learned to walk! Yep I here you, 6 month old babies can’t walk! Well this one could!

As we know, when you have autism, you do not follow the rule book, nothing is ever straight forward, except in this case it was quite literally that, straight forward (but not as we know it!)

Aiden was, in a physical sense, extremely rigid. He didn’t bend easily. He hated lying or sitting down and was only happy when he was up right. Everyone would say, ‘he’ll be much happier when he can walk, he won’t be so frustrated’. I longed for the day.

We spent hours on end bouncing him up and down in an upright position, anything to stop his constant moan. But, because of this, he never learned to crawl or bum shuffle or in fact, he couldn’t even work out how to get from a lying to a sitting position.

The picture Above was taken the day Aiden walked. Gorgeous I know – but looks can be deceiving!

Aiden was absolutely no help to himself whatsoever. He could walk ‘straight forward’ and that was it!

Most babies/toddlers crumple to the floor when they fall, not Aiden, he didn’t bend! So he would fall flat on his face, he didn’t even put his arms out to save himself. Once on the floor that was it, he didn’t know how to get up, not even to a sitting position, so he would lie face planted to the floor and screem! Yey, the walking stage was great fun!

He was probably about 18 months before he’d worked out how to stand up and confidently change direction while standing – that was a long year!

Once Aiden had established walking, he decided he didn’t much like it anymore and gave up! Not always, but just when he felt like it – which just so happened to be every time I needed him to!

He has pretty much refused ever since! Walking was on his terms only and just the thought of having to walk somewhere would send him into complete meltdown!

Aiden has hyper mobile joints and his body’s way of dealing with this is to stiffen. He was like a little robot. He couldn’t tell me until more recently that he was in pain, so I didn’t know.

But let me tell you, Aiden surprises me everyday! The child who refused to walk anywhere, just took part in a 10 mile race!

He just completed The Great South Run. It took him 2 hours and 20 minutes, he didn’t run it all, but he did it!

He was in control, it was his choice when to jog or when to walk and he slept for a week after, and is still hobbling, but he did it!

Will him come to the woods for a walk next time I ask? Unlikely! But, if you’d have asked me when he was 5, 10, 15 years old, do you think Aiden will ever take part in a 10 mile race? I would have said ‘NEVER!’

Never underestimate the strength within!

#Proud

Aiden, from a really young age would rather cut off his nose despite his face! No amount of coaxing, encouragement or bribery, would make him change his mind, he would rather miss out all together. Most people just think he’s stubborn, which says to me, they believe he’s choosing to be defiant, and it’s this attitude on autism that I would like more people to understand.

Aiden is not choosing to be stubborn, this is a part of his autism, let me explain…

In everything Aiden does, it has to be, ‘all or nothing’. As a child, Aiden would paint a picture ensuring the whole page was completely covered, no plain paper would ever be seen. Easel’s would drive him in sane because the pegs holding up the paper would prevent him from filling the page. If he did gluing, he would be sure to use every ounce of glue in the pot. If he had food or drink he would insist on the bowl or cup being filled right to the very top. And, if you tried to give a broken biscuit, well, anyone would think you were trying to murder him!

He also couldn’t bare it if he got one tiny fleck of dirt on his clothes, he would strip, there and then. However, he if he was completely dirty, like covering himself in paint or rolling in a puddle, well that was ok!

When in the bath, he would use his hand as a measure for shampoo, ensuring his whole hand was completely covered and as for toilet roll, well, that was measured by the length of his arm x4 because he has 4 limbs? If you understand that, please explain it to me!

We have made some small progress in life. Now 18, Aiden will tolerate a broken biscuit, although he would rather eat the whole packet, given half a chance!

And not surprisingly, he still has this innate ‘All or Nothing’ mindset.

Pizza is a big one! They are NOT for sharing! If anyone try’s to take a slice of Aiden’s pizza, he will just give it all to them and he will go without!

Frustratingly, he still changes his clothes if they have a tiny crum on them but thankfully he’ll wait until he gets home before he strips! We do have to pretend we’ve washed many of his clothes when we haven’t or my laundry would be impossible to keep on top of!

And he still insists on the cup or the bowl being completely full – We just comprised by using smaller cups and bowls.

Shampoo I now dispense into a smaller bottle- no brands in this house!

But toilet roll, well that’s still an issue!

Obsessive traits are a neurological disfunction and rigidity of thinking is an inability to change.

These two traits are a part autism and, therefore, something that cannot suddenly be fixed.

However, finding the route cause will enable people to support and find ways to workaround these triggers.

And remember folks, stubbornness is a term used when people refuse change their attitude.

So, I think we know who the stubborn ones really are!

Who would think saying ‘HELLO’ was one of the hardest words in the world? Well to Aiden, it most definitely is!

Society has deemed this so called simple, polite welcoming word as a must! And if you don’t say hello, you are either seen as rude, ignorant or ill-mannered or on the flip side, we take it personally and believe that person doesn’t like us or we’ve upset them somehow.

As an adult we know that by saying ‘Hello’ it gives us so much information about that person. If you are greeted with a happy, bubbly hello, or a hello, followed by eye contact and a smile or a hello followed by eye contact and a hand shake or by eye contact, followed by a hug, you can instantly determine what mood someone is in.

I spent years trying to teach Aiden to say ‘Hello’ and I would probably say 18 years later that he now says hello about 20% of the time! Was it worth it? Who knows! I still celebrate to myself when he say it in the right context without being prompted. (A silent victory)

So why is it so hard? We know that social interaction is difficult for those with autism and that, this so called ‘social etiquette’ does not come naturally but Aiden can now explain to me his reasons.

Aiden’s view is that he does not understand the purpose in saying hello in most situations! Let me explain: If somebody visits my house, even if it’s a friend who Aiden knows well and likes, he will greet them not with ‘Hello’ but instead with, ‘what are you doing here?’ Or sometimes, ‘how long are you going to be here?’ He is not being rude, simply curious. He needs to ensure their being is not going to interrupt his plans for the rest of the day.

If Aiden is in same place as someone when they arrive, he can see them, and they can see him, meaning, he knows that they are there and they know he is there. He believes he does not need to acknowledge their presence in another way ie with a ‘Hello’. If they choose to say hello that’s up them but Hello is not a question, therefore, he does not need to reply!

If someone knocks our door and Aiden opens it, Aiden will greet them with ‘come in,’ if they are friends, or ‘what do you want?’, If they are strangers. When Aiden answers the phone, he says ‘who is it?’, because he says, that makes more sense. He can not associate a person with a voice when he can’t see them, therefore, saying ‘hello’ is pointless.

Another massive factor for Aiden is that, this one little word ‘Hello,’ is never, just one little word. Hello is the first word of many unpredictable, leading, open ended questions that follow which are utterly terrifying and he will do anything to avoid!

And finally, me telling Aiden to say hello, is a demand and as we know, demands, in the world of PDA are met with instant avoidance, so for years, I set him up to fail before he’d even begun.

After learning this about Aiden, which trust me, took many years, I realised Aiden saying hello, was for mine and other people’s benefit so he didn’t sound rude.

Now, rather than sounding like a broken record and getting nowhere, saying ‘Aiden, say hello’, I turn the attention onto the visitor and say to Aiden, ‘Mr Whoever, would like to introduce himself to you’.

By doing this, it detracts from the torturous word ‘Hello’ and allows the visitor to believe they’ve been acknowledged.

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Who needs friends? Well, for years I thought Aiden did. He always struggled to make friends, let alone keep them, he was never invited to a birthday party or a play date and as for sleepovers, well he’s 18 and we’re still waiting!

The only kids he ever socialised with were my friends kids – because they had no choice, and over the years they grew to accept him! You certainly find out who your real friends are when you have a child with additional needs!

Anyway, after years of desperately trying to get him some friends, and feeling really sad for him, it turns out he’s actually, genuinely not bothered. Aidens’ concept of friends is very different to ours, therefore, that need for friends, as we know them, is just not there. This was incredibly hard for me to understand especially when I, desperately need my friends and the busyness of people around me.

Just to be clear, I know this is not the case for all children on the spectrum and many become truly distraught with their struggles over friendships. I see it all the time at the school where I work, and for that reason, I now completely accept that this aspect, for Aiden, and those like him, is a positive one! All those years of worry, when I should have been celebrating!

Let me give you an example of Aidens’ idea of friends from just this week.

We went to the cinema as a family along with another family (family friends). I tell the kids to choose their seats. Aiden chose a seat on the end of a row, away from everyone else and placed his popcorn on the seat next to him. ‘Aiden’, I say, ‘your friend, Abby, would like to sit next to you?’ To which he replies ‘I’m sorry, my friend ‘Popcorn’ is already sitting there and I like popcorn more than I like Abby!’ Now you can see why we’ve lost so many friends over the years!

The only person that matters to Aiden, is Aiden! He can’t put himself in someone else’s shoes, to understand how they might feel and therefore holds no guilt – what a lovely place that must be!

Aiden is happy with who he is! He never questions it, so why should I?

When we try to make kids conform, we have to be mindful about who we are doing it for, is it for their benefit or is it for ours?

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Demand Demand Demand…. by the age of 3, I was able to connect that the meltdowns were as a result of demands being put upon Aiden, so why didn’t I learn to stop demanding things?

I can only think it was because I thought I knew best! I was the adult, therefore, I was in charge and I wasn’t going to let a 3 year old rule my life! Even though indirectly, he already was! I guess this is what denial looks like!

From an onlooker ‘Aiden didn’t like being told what to do, and was only happy when he got his way!’

Years went by and the violence escalated, school for Aiden was unbearable, and he’d devised his own coping mechanisms. He’d cleverly learned how to play the ‘get out of jail free’ card. If he weed – yes urinated, on people, he would get sent home. Equally the same would happen if he threw tables, bit people or simply refused to move, he’d sussed it. I was his safe person and when he couldn’t cope he knew what he needed to do, to get back to me.

By the age of 6, he’d been kicked out of school and thankfully given a place in a nurture assessment unit and that’s exactly what they did – they nurtured him.

I think this was when the realisation set in that maybe there was something wrong, (even though deep down I had known all along!)

I began to relearned how to communicate with Aiden without putting demands on him. This was tough and something, even now 18 years later, we still sometimes get wrong. It goes against every parental instinct.

It involved minimising all demands and only requesting the absolute necessary ones. We changed the language and tone within a sentence so it was no longer a demand but a more open ended suggestion or we made the demand into a game.

For example:

“Aiden, go and brush your teeth now please.”

Became:

“Aiden, I’m going to brush my teeth now and I’m going to use the timer.”

Or

“Aiden, put your shoes on now please”

Became:

“Would you like some help putting your shoes on?”

Sounds simple? Yes, it’s basic, but the hardest part is making it sound natural and not showing your frustration or anger when it doesn’t work. Aiden was and is far from stupid! He knew if I wanted him to do something and I knew it had to become his idea before he would even attempt it.

Accepting Aiden had Autism was easy but the realisation that it was me that needed to change as a parent was far far harder.

As I said in the beginning – ‘I am the adult’ and when I really thought about that phrase, for me, that was the light bulb moment. I realised, yes, I was the adult and it was me that needed to change if I was going to be able to help Aiden.

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The perfectly behaved baby I’d ordered was never actually delivered and this parenthood thing was beginning to wear me down. I was meant to be super nanny – babies in my care were always perfect! Um, unless they were mine, apparently!

Nothing would settle him! If I picked him up he cried, if I put him down he cried, I had no idea what I was meant to do! I felt like a complete failure, not even his own mum could make him happy. He would get himself so worked up he would hold his breath and go blue and then he would over heat! I would strip his clothes off and stand outside bouncing him frantically.

Eventually I learned he was far more content without clothes on in the first place, however, this was a challenge, not for him or myself but for the rest of the world, and this is where I first learned to wear my new own grown armour whilst out in public.

“That poor baby! He’ll catch a chill” “it’s freezing, you should cover that baby up” no wonder he’s crying, he needs some clothes on” “where’s his coat?”.

I’d heard it all, complete strangers would have an opinion, everyone seems to know far better than me and somehow they felt that they had the right to tell me so!

Aiden has olive skin and tans easily, so as a baby, wearing nothing but a nappy and occasionally a vest for the majority of his little life and being born just before the summer meant he was no pasty pale baby.

On one of those painful trips to Asda, before I learned Asda sent Aiden into complete sensory overload, a delightful older lady decided she would explain to me in great detail what an awful parent I was for allowing my baby to be the golden brown colour he was and insisted I cover him up. With my new grown armour and my lack of patience I couldn’t resist my flippant reply! “Thank you for your concern, however, my husband is actually black, African in fact, and we’re actually quite surprised at how pale our baby is!” Ok, so it was a little white lie, but seriously why do complete strangers feel they have the right to judge someone they know absolutely nothing about!

Putting on my suit of armour was essential and has truly helped me mentally, the comments from the general public on some days have been appalling. I had to learn how to see the funny side or I would have either gone completely crazy or I never would have left the house!

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#Autism #disability #Parenting #CysticFibrosis #PDA