World Autism Awareness Day

Today is Autism Awareness Day. Being Autistic is not something to fear, feel
ashamed of, or be devastated by! Being Autistic is simply another way of
being!

Being Autistic is awesome but we need to share this knowledge the
world. Society must stop seeing Autism as a deficit model but instead a
different model – we are all human and everybody deserves to be respected
for who they are.

There is so much false information around Autism and this leads to
generalised judgements being made.

Here’s just a few –

If you are autistic you can’t give eye contact – watch Aiden in this video, he
absolutely can!

If you are autistic you don’t understand humour – watch Aiden in this video,
he is more that able to laugh at himself and the situation with others.

If you are autistic you can’t work within a team – watch Aiden in this video,
he works brilliantly as a team player.

If you are autistic you can’t have friends – watch the video…

If you are autistic you can’t interact with others – yeah yeah you get – watch
the video!!!

So where has it all got confused?

It’s not that autistic people can’t do these things, it’s that quite often, the
environment they are in stops them from doing these things.

Our society is
geared up for one way of being – the neurotypical way!

But as you can see,
when you give an autistic person the right environment , their own
neurotype to work with, a non-judgmental team who respect, trust and
allow him autonomy, Aiden is able to interact, engage, build relationships,
have fun, complete a tricky task through problem solving, work as part of a
team and so much more.

So let’s share this knowledge and show the world that being autistic is not a
deficit model of being human it’s simply a different model and one that
need acceptance.

Let’s support those who diverge from the majority and
provide them with an environment they can thrive in.

Perfection is a perspective

Mother’s Day! So how was it for you?

I had a wonderful day. However, sometimes the pressure we put on ourselves to simply enjoy the day can be exhausting!

A day of appreciation for us Mum’s can sometimes and often unintentionally cause more stress than any other day.

We see all the other social media posts about how perfect their day is and we can sometimes feel envious of what others have.

However, perfect is merely a perspective.

I received a beautiful and thoughtful handmade card from my fabulous children, all organised by my kind and compassionate daughter, Jasmine. A beautiful soul inside and out. She, as was I, super proud that Aiden had willingly participated in the creation. A fine victory!

I received flowers from Morgan for the first time.

I was able to meet up with my amazing mum (and dad) and enjoy a cream tea at the beach, watch my children surf, walk the dogs, spend time with my husband and have a delicious roast dinner cooked for me.

All of which sounds perfect, and all of which was perfect, it was “my perfect”, but that doesn’t mean my day was flawless. I could have chosen to describe my day in another way.

My morning started with us running late. I arranged a time to meet my mum, which then changed 4 times because getting 7 people organised clearly takes longer than anticipated! Especially when you forget to wake one of them up!

“Where’s Jazz?” I say, as I head out to the car, only to realise she’s still fast asleep in bed!

Nip to the shop to buy the “homemade” scones for the cream tea – (homemade scones!!! Who does that???) Well, that didn’t work because they had sold out, so Eccles cakes were the make do substitute.

Aiden was unable to even acknowledge the fact that it was Mother’s day, and couldn’t bring himself to come to the beach.

When we returned the kids squabbled over the shower. Tears and tantrums erupted, just like a normal day – because it is a just normal day.

Timings didn’t quite work for the roast. Dinner was ready the kids weren’t! We came back from the beach later than planned, so we ended up eating at the table in shifts; between the boys physio and workouts, the continued hot water shower battle and Aiden completely overwhelmed simply because it’s Mother’s Day! (A day geared up to be a special and he can’t cope with the expectation.)

It was still my kinda perfect! Finding the perfect in my day meant I had a wonderful day. Picking out all the things that I didn’t have or that didn’t go to plan or that didn’t live up to the idealistic Mother’s Day expectations would have meant I’d had a terrible day.

You choose your day!

My day has been wonderful and equally exhausting.

I’ve now clawed some energy back by having a long bath, burning some candles while listening to my audio book – and I finished off by telling myself that I am bloody marvellous!

Letting go of the expectation can be hard but finding gratitude for what I have changes my perspective and allows me to see the perfection in my day.

Happy Mother’s Day to you all – I hope you can see the perfect in your day.

Authenticity is a right not a reward

Here’s a little update of what our wonderful Aiden has been up to during this last lockdown.

Special interests are a fundamental element to the happiness of an autistic person. Some interests come and some go, other interests stay for the duration. Amazingly, even someone who may lack focus on day to day tasks can have an immense ability to hyper focus on their special interests.

When Aiden is discussing his, he is confident, engaging and super knowledgeable. He is able to show true authenticity, he can be his true self and feel comfortable and safe.

Aidens specialisms have changed over the years but two have always been there – football and junk food, more importantly, sweets!

Special interests are not something that should be used as a reward to make someone conform. It is simply their right to be who they are. But they can be used in genuine ways.

Inventors are never told to stop learning, stop researching, stop being creative within their subject! They become inventors because of their ability to hyper focus, to be curious and to never give up. And this is to be celebrated.

So don’t stop your child’s passion, embrace them, learn from them, understand and accept their love, and when they are older they can live every day doing a job within their field that they absolutely love!

Now who doesn’t want a career that fulfills all their dreams!

Don’t use special interests as a throw away reward! Reward your child with the time, patience and respect that their knowledge and passion deserves.

Aiden would love to to like his new Facebook & Instagram page and share his story, and if you love sweets as much as he does maybe you could even try some out.

Alternatively they make great birthday presents!

https://instagram.com/sweets_delivered_to_your_door?r=nametag

AutismAcceptance

autistic-experience

PDA

autism

autismawareness

Christmas preparation and autism.

Aiden loves Christmas, but his love comes at a high price, both literally for us and generally speaking for our whole family, including him.

Over the years we have learned how to keep Aiden’s anxiety low, mostly by having routines and keeping life predictable. But for the rest of the family that is often at their expense. Let me give you an example. Putting up the tree – what a lovely, magical and Christmasy family event, well that’s how I remember it from my childhood. It was so exciting, Christmas music on, all the family together, munching our way through the Quality Street tin (which was much bigger then!) I remember taking it in turns with my sister each year to being lifted up, by my dad, to put the fairy on the top of the tree.

Yeah, that’s not what what my children will remember. Aiden’s love for Christmas causes him so much anxiety that he he has to plan it to the enth degree.

His control led the rest of the kids to just back off and leave him to it. Aiden needs everything to look the same each year, so the tree goes in the same place with the same decorations and is put up on the same day. The same with his light display and with every decoration in the house. The joy and Christmas cheer is somewhat transformed into a militant mission with strict procedures.

Now the others are older, they now fully understand and accept that Aidens control is a need as opposed to a want but that doesn’t stop me from feeling like they didn’t have the same magical experience that I did. So this year, we came up with a plan.

As it turns out, the boys, being boys or being teenagers, I’m not sure which, are not bothered about putting up a tree or feeling Christmasy. But, I knew Jazz still wanted to be a part of it. So this year, we bought Jasmine a new little tree to go in her bedroom, some lights to decorate her room. We put the Christmas music on, ate the chocolates, from the now tiny tin, and danced around the tree like no-one was watching.

We will always celebrate the fact that Aiden loves Christmas, especially after so many years of us getting it so wrong for him. Back then, it was hard for us to take a step back and understand that we were the ones that caused the meltdowns by trying to bring surprises and make things magical. But we got there in the end. It’s amazing that he still loves it.

However, as much as he loves it, Christmas still causes him anxiety. He still needs to know what presents he will get and we still have to give them to him in the same way every year. He still has to take control over anything Christmas, and he still has no concept of money. But he now finds pleasure in giving presents to others, and we take that as a massive win.

Why some kids with autism are living their best life during lockdown.

To the majority of us, the life we are facing right now is pretty weird. We are missing our friends, and are bored with the same mundane, Groundhog Day feeling that each day brings. There’s no excitement, no spontaneity, no bumping into old pals at the shops or stopping in at the local after a leisurely walk and for those now furloughed, there’s not even any adrenaline fuelled deadlines, that we used to think we hated but now weirdly miss.

Although it has to be said, there are some parts of lockdown I’m actually quite enjoying.

The biggest part being that Aiden is absolutely loving life. We have had no big meltdowns for 10 weeks! Which means he’s enjoying it even more!

So what’s different? Well, the biggest factor is that he doesn’t have to socialise.

Now don’t get this confused because Aiden is actually a sociable guy, which may seem odd for someone with autism. That myth that all people with autism are loners, isn’t actually true but it’s not as clear cut as it may seem.

Socialising, involves so many different aspects and skills – knowing when to talk, pretending to be interested in what someone else is saying, dealing with new people, changing plans to please others, going to new places – the list goes on and on, yet to the neurotypical, the majority of those skills just come naturally – we don’t even know they exist. But to those with autism, it’s the lack of these social and communication skills is what makes everyday so hard. So, it’s not that Aiden doesn’t like people or that he doesn’t want friends, he does, he loves being with familiar people but the whole experience is so unpredictable that it causes immense anxiety. To live with that fear day in day out is absolutely exhausting.

Right now all that has gone, and Aiden is absolutely living his best life! Spending all his time in the comfort of his own home, in his safe environment, doing what makes him happy, is a really good place to be. Nothing unexpected can happen, no one is going to suddenly drop by and all conversation is easy, it’s on his terms and he has no social expectations to meet.

Demands being placed upon him are significantly reduced (pj’s are no longer just for nighttime!) and he gets to spend everyday doing his favourite thing – chilling out in his room, binge watching every single episode of his favourite trashy shows over and over again! He is living the dream!

It took a few weeks for him to desensitise and relax into his new routine but we can now see a genuinely happy smile shine through.

I know it’s going to be hard venturing back out into the real world again when all this is over.

But, if I can take one positive from this difficult time it has to be this.

It’s been such a valuable time for Aiden to reset and relax, and has given him a break from a life filled with constant anxiety that would otherwise never have been possible.

I’m sure for some it has been a very different story, but in all this uncertainty and sadness I’m super a proud Mummy.

Why reward and punishment doesn’t work for children with challenging behaviour…

I see so many parents of children with Autism, ADHD, and other Global Developmental delays who tell me they can’t manage their child’s challenging behaviour. They say they have tried everything, and nothing works!

Oh my, I remember that feeling.

What they mean by that well, what I meant by that, is that i’d followed our standardised societal rules when it comes to behaviour! Reward the good and punish the bad!

Parents often say, “We’ve tried every reward chart possible; we’ve taken away all their privileges but they just don’t care. It doesn’t stop their horrendous behaviour!”

I spent years doing the same!

Then I had that light-bulb moment! If I know it doesn’t work, why am I continuing to use this strategy?”

Probably because I didn’t know what else to do, I couldn’t just let him get away with it.

If this sounds like you, then you’ll be pleased to know there is another way.

So take this as an opportunity to leapfrog my mistakes by changing your strategy and start a new chapter! But how?

Well, first let’s understand the strategy that didn’t work. The technical term for this behaviourist notion is Operational Conditioning. Which basically means, I am in charge, and you do what I tell you. When you do what I want, you’ll be rewarded but when you don’t, you’ll be punished.

Now let’s think about why that might not work for some children!

Think about the worst possible dinner you could ever be served (for me that would be cucumber, shellfish and almonds with a sprinkle of desiccated coconut – I want you to eat that dinner at the table, with everyone watching you. If you do, I’ll give you a sticker and if you don’t, I will take away the one thing in life that makes you happy (in my case that would be wine).

Are you feeling motivated?

I hear you, ‘maybe the reward should be better!’ Ok, so let’s make the reward a piece of cake or extra time in the pub!!! Well actually, it doesn’t matter how good the reward is, or how bad the punishment is, because they don’t work!

These Kids know only too well they are getting it wrong. That does not need reinforcing. The kids that always get it wrong need help, not punishment.

Ever been on a diet, vowed to get fit, or attempted dry January and failed? I’ve spent 30 years failing at that! To continually fail at something is soul-destroying.  Yet we allow our kids to fail time and time again.  If that wasn’t bad enough, we then display it on a chart on the wall, for everyone to see! And then… we punish them again! They lose their privileges, miss their break,golden time, or get detention – get sent to isolation or excluded!  No wonder why so many kids have a low self-esteem and mental health issues!

So why don’t consequences work?

Because no matter what reward or punishment you put in, these children simply don’t have the skills needed to achieve the expectation you made!

What if we changed our mindset?

What if we believed that all children, when they are able, will set out to achieve their best.  We often think our kids purposely set out to annoy us, but I have yet to meet a child who actually enjoys making themselves miserable and unpopular! Children that have meltdowns and challenging behaviour are not seeking any kind of glory, they are seeking our help!

Just like children have built in safety reflexes, they also have a built-in aspiration to achieve! Remember those smiles when they took their first steps – they are so proud to have pleased you! They want to do well!

That shows that rewards can be great, the reward of a smile, a cuddle, kind motivational words, work really well, but consequences do not, and actually, for these kids, they make it worse.

I hear you, ‘but they have to learn consequences because that’s life – they can’t break the law and get away with it. It’s not ok to smash my house up or punch people!’

Agreed, you are correct, that is not ok. But you are missing a crucial point!

The most important aspect of changing your mindset is this…

Challenging behaviour is behaviour that challenges YOU! The behaviour you see is a means to an end for your child! And is actually that safety reflex kicking in. Just like you had a strategy to deal with the behaviour (punishment or reward), your child has a strategy to keep himself/herself safe. Your child isn’t purposely kicking off to ruin your day, they are using the only way they know, to stay safe.

Trust me, there will be a perfectly logical reason your child is displaying this behaviour. Therefore, it is your job to discover the cause of the behaviour. If you eradicate the cause you will eradicate the behaviour.

Of course, that is easier said than done, I’ve been there! It’s not always possible to eradicate the cause, especially when it’s an environmental issue or involving external people, but once the trigger is identified, solutions can be created to reduce the cause.

And solutions are not punishments. Solutions need to be achievable for both you and your child and solutions must be solved by working together with your child.

Theses children need your help to find a solution because they lack the skills needed to come to it themselves.  So instead of punishing your child for getting it wrong, teach them how to solve the problem. Give them the tools they need to problem solve.

Children with Autism are rigid thinkers, they find it difficult to see other people’s viewpoints. They may not be emotionally attached to the problem. They often say they don’t care about the other person and are only happy when they get their way, but that’s ok. They don’t need to own someone else’s problem; they just need to understand that there is a conflict between two people that needs to be solved.

Let me give you an example of an instant mindset shift:

Let’s just say I’ve just sat down to watch Strictly Come Dancing, and Aiden comes in and turns the tv over because he wants to watch the X-Factor.

I could go with the consequence option like 99% of society would.

I’m watching Strictly Aiden, please turn it back over. He’ll say no, and I’ll move on to a consequence. Which will then escalate. The chances are, he’ll throw the remote at the tv and begin to scream and shout as if I’m the worst parent in the world. I’ll end up upset and say things I don’t mean, as will he,

or

I could choose to pick my battles (as this isn’t the end of the world) and allow him to watch X-factor,

or

I could choose to identify this as a problem and teach him the skills needed to solve a problem.

Being a rigid thinker generally means he won’t easily think of anyways to solve the problem, so this is where I suggest some ideas, but they need to have positive outcomes for both me and Aiden and ultimately Aiden needs to agree to the outcome.

I could suggest; we watch half of one show and half of the other (which would never work, but it’s an idea!) or we could record one show and watch it after, or you could quit watching X-Factor because it’s rubbish! (it’s an idea!) There are probably some other options and he might come up with some after my bad ones.

Ideas can be trialled and if they don’t work, some more can be trialled. Work with your child, they will want a solution just as much as you.

This way of thinking has much better results long term and actually teaches your child the skills they are lacking. If this were me starting out with this new mind set, in this situation, I would have gone for the ‘pick my battles’ option. I do not have rigid thinking and know I can record the program and it’s not the end of the world. Equally, trying to teach a skill while Aiden’s favourite program was on, would not have worked.

That doesn’t mean he has got away with it, it simply means we can revisit this when he is calm and regulated. It also means we can avoid another meltdown if this situation were to arise again.

So just to explain the difference between behaviour and lack of ability.

The expectation I put on Aiden was to understand that we have different viewpoints. Aiden lacked the ability to understand my viewpoint and how his actions affected me, he also lacked the ability to shift from one mindset to another. Why would I punish him for something he doesn’t understand?

I am not suggesting that Aiden wouldn’t have understood that screaming, shouting and throwing was wrong. He definitely knows that, but that wasn’t the problem. The problem was that suddenly his plans had changed, he would have been fuelled with emotion and he would have been unable to find the appropriate reasoning skills needed to solve the problem.

All challenging behaviour is predictable, which means you can work on the skills needed to combat this pro-actively. Prioritise what to work on first and use the ‘pick your battles’ option for the ones to work on in the future. Equally, if you’re caught short, choose to avoid a meltdown at all cost, until you can work out what the actual cause is, because punishment will only make it worse FOR EVERYONE.

If you want to understand more about this mindset, I recommend you read the Explosive Child or Lost at School by Dr Ross W Greene.  This change in mindset, my change in mindset, has revolutionised the relationship I have with my son.

Is the value of sport being out priced for those with disabilities?

Sport is the key to valuable learning, yet, it seems completely out of reach for so many with disabilities.

We personally made it our mission, as a family, to get our kids in to sport, mainly because it keeps them alive. Regular, high intense exercise is actually the most effective treatment for cystic fibrosis, so of course it will be our mission. But actually it has so many other benefits, aside from the obvious physical ones, which are vital to a happy and healthy life.

Here’s just a few of those benefits, a sense of belonging, inclusion, self worth, self belief, friendship, resilience, respect, discipline, determination, I could go on and on.

But this has come at a huge cost and one that has not been an easy decision.

Sport was not easy for Aiden and as we discovered early on, team games were a big no when he was a youngster.

But Aiden found swimming, which itself is a solitary sport and he, eventually, was lucky enough to find an amazing swim coach who understood and accepted him.

For those who aren’t academic, sport can be their saviour, my motto has always been, channel what you love and you will become an expert in your field.

So why aren’t most families following my motto?

Simple, because it’s too bloody expensive!

Let me give you an example:

We have just taken Aiden to a National ParaOlympics Swimming Gala. All national galas are held in Manchester or Sheffeild. So, for starters, unless you happen to live there, you will have to travel.

Many disabled people won’t be able to drive, so are reliant on a carer to take them. Many may also have personal care needs too.

Galas are often a two day event so two nights accommodation is needed, for a minimum of two people.

Equally, a babysitter may be required for any siblings left at home.

Costs include petrol to get there and back. We live in Cornwall, so for us it was 600 miles worth of petrol. Oh, and not forgetting the two days car parking tickets.

Equipment, you wouldn’t think much was needed for swimming, which I guess is true, but they capitalise on this and whack up the price on swim wear, and only allow specific ‘quality assured’ swimmers at the ripe old price of £200 plus.

Aiden also needs prescription goggles which are £200.

You then have to pay for each individual race entry which is anywhere between £12-24. Aiden did three.

Then, get this, you have to pay to watch your own child race, £18 each person, so £36 for myself and Simon, Aiden’s dad. Unreal!

And if that’s wasn’t enough you also have to pay £2:50 for a Brochure, plus £3 for the heat sheets, so you know when your child is racing. Can you imagine if I missed it! Bearing in mind, each race only lasts for a maximum of 2 minutes!

So, it’s a whopping £500 plus total for less than 6 minutes in the pool.

Am I selling it? No, I’m sure I’m not, but Aiden absolutely loves being a part of the swimming world. It gives him a sense of purpose, a sense of pride, conversations which last months, motivation and most of all memories.

But who can afford this level of participation?

Not many! In fact, yet again, Aiden was the only person, with a learning disability, from Cornwall. There were actually only 19 young people over the age of 18 years old with a learning disability out of the whole country!

That’s 19 people out of a possible 1.5 million! Yes 1.5 MILLION people in the UK have learning disabilities.

Now, I know swimming’s is not everyone’s cup of tea, but 19, really?

Sadly, I’m not surprised, because even if the galas were more accessible, there is still a massive gap across the country in accessible swimming clubs.

The Special Olympics and MENCAP do some good work in the sports industry to combat this, but, it’s far from sorted.

Local clubs often have zero funds for the running costs and sadly in many areas, because of this, they simple don’t exist, Cornwall included. And that’s not just for swimming, that’s all sport! Cycling, triathlon, surfing, rugby, canoeing, I could go on – there are no clubs for so many sports.

Potential, talent and aspirations are definitely being missed and so many people, young and old are missing out on these opportunities.

They are not only missing out on the chance of success but on the vital learning, emotionally, socially, physically and mentally that sport brings.

Aiden is passionate about changing this and has taken it upon himself to learn how to become an assistant swim coach and plans to set up his own club here in Cornwall for swimmers who want to compete. And maybe, once he achieved that, he’ll look at some of the other sports that bring him so much joy to share with others.

Just to reiterate my motto – channel what you love! Aiden is not the best swimmer, but he has become a great swimmer! Although, more importantly, he loves being in the water, he is proud to be part of a club and loves the talk that competitive galas and competitions bring – even when he doesn’t win.

Without sport Aiden would be lonely, isolated and unhealthy, and he definitely wouldn’t be the amazing young man he is today!

Click here for Aiden’s go fund me page for his New Swim Club. https://www.gofundme.com/f/learning-disabilities-competitive-swim-club?utm_medium=copy_link&utm_source=customer&utm_campaign=p_na+share-sheet&rcid=96696fb4782a408db86d0c35e8fd9976

Just when you think you’ve got your shit together!

Not much blogging going on in my life right now because I simply have no spare time.

That was not the plan!

But, as a parent to a child with special needs, life never goes according to plan! Even when that child is now an adult child. And even when you have autism in your life, which means you live and breathe every inch of your life through plans!

By the time your Neuro typical child is 19 you expect them to be independent. Some will have been in uni for a year and are entering their 2nd year having just moved in with a group of friends to their first shared house. Others will have decided not to go to uni and are instead in their 2nd year of a job or apprenticeship in the big wide world. Some may have gone in the forces and others will have taken a year out to travel the world. An exciting age for any 19 year old. Unless of course you have additional needs and these fabulous opportunities are simply not available to you.

Welcome to my world!

I came to terms with the reality that Aiden is unlikely to leave home along time ago, this is not my issue.

My issue is the lack of provision and opportunity that is available people in Aiden’s situation.

Just to fill you in, and for those who don’t know. Young people with additional needs who have an Education, Health and Care Plans (EHCP’s), are now able to stay in Education until the age of 25. Fantastic, an extra 7 years to learn a worthy skill which will increase their chances of succeeding in a meaningful job within society.

Equally, this enables additional time for them to learn independence skills for a smoother transition into adulthood.

Well, I’m sure that was the idea when they introduced the latest code of practice.

But sadly, as I have come to learn, that this so called fantastic system is not fantastic at all.

Aiden loves sport and dreams of having a career in sport some day. Any neuro typical child who wants to pursue a career in sport, goes to college and undertakes a sports course. Level 3 if you were successful in your GCSE’s or Level 2 if you weren’t quite so strong academically. A sports course typically involves learning the theory of sport along with taking part in practical training. It also incorporates a competitive element. Ie playing matches against other colleges in your chosen sport.

However, for someone like Aiden who is unable to achieve to a GCSE level does not have this opportunity.

Instead, they get the choice of one course, which in our county is called the Foundation Course! So, not actually a choice at all, as it’s impossible to choose, if there is only one option!

Aiden completed this course for 3 years, and I’ve still yet to discover what he learned during his time there.

After 3 years of searching for what comes after college, we finally thought we’d found the perfect course. A coachmakers course. An accredited qualification in sports coaching. Perfect! The course was completely practical, with assessments done by gathering evidence through discussion, observation and questioning. And by completing this course Aiden would have gained an actual qualification, and one that is recognised in the sports industry. Brilliant!

All sounded to good to be true. And it was! Aiden started the course and absolutely loved day one. But as day two approached, I received a phone call telling me that the college has decided to pull the course! No explanation, no warning, that was it, the course was no more!

Great, now what?

Stepping aside from Aiden to before this happened. I finally thought I had got to a time in our lives where I could think about my own career. Knowing Aiden was sorted I found myself the perfect job. Part time, during school hours, but a REAL paid job!

I have spent 19 years raising my children I have been their mum, their carer, their nurse, their therapist, their voice, their advocate, along with many other roles which being a mum and having a disabled child involves. Let me just pause there and say: I have absolutely loved and enjoyed every single minute. Of course my role will never end, but I finally felt like there was now time in my life to do something for me!

Back to the issue – Provision!

So what else is there for Aiden? Well, I know what’s on offer! There’s gardening, gardening or gardening! Ok, so I may sound a little cynical but that’s not far from the truth.

Why is that the choice? Why does society think that all young people with learning disabilities want to do gardening? Don’t get me wrong I’m sure that’s exactly what some young people would choose. But not all and most definitely not Aiden.

Obviously, life goes on and as always the parents are there to pick up the pieces.

But how are parents meant to work when they spend there life living on the edge of what’s next?

A child or an adult child with additional needs can need 24 hours support or supervision to function in the world. That doesn’t just happen that takes detailed planning, time and a dedicated team of people. And crucially it involves money.

To pay a person on minimum wage for this support would cost £76,440 a year!

Now let me tell you how much you will receive if you have to give up your job because all of a sudden your disabled child is excluded from school, or they are too poorly to attend school or the college have just decide to cancel the course!

For 35 hours of caring a week, so no evenings, nights or weekends, you will receive £3,439.80 in carers allowance! That equates to £1.89 per hour! Happy living on that guys!

But it’s ok because you are allowed to work as-well – that’s providing you can find someone, for free, to your after your disabled child because trust me you won’t have any money to pay them! And oh, there’s no provision!

But you can, when you’ve done your 35 hours caring, go to work, and earn a whopping 76p per hour for any remaining hours of your life! That’s £123 per week.

Cheery ah! But sadly, this is the reality of our society.

Of course, I am Aiden’s mum and I will look after him regardless, I don’t want payment for looking after my own child but I wouldn’t be in this situation if there was appropriate provision for him in the first place.

Without the provision the system is broken, the vital link in the plan causes a downward spiral of dysfunction and subsequently has massive implications on not only that child but the whole family.

Aiden is more than capable of working within our community and is already a valued member of society but he can’t do it alone and he needs a little longer than most to develop his skills.

But without the opportunity of appropriate, relevant and more importantly, exciting provision we are preventing so many young people from reaching their full potential and causing unnecessary hardship and stress on thousands of families.

Why do some kids with autism only eat chicken nuggets?

Kids generally can be fussy eaters and that’s ok because, we know, the more they try something the more they’ll get to like it. Eventually a typical child will taste and eat a variety of foods because their curiosity over rules fussiness and equally, our bribery skills work really well.

But what happens when your child simply refuses to try anything?

Well, hello Autism!

I hear you, “I’m sure my child is just being stubborn?”

“I’m sure my child kicks off at meal time because they know it annoys me?”

Yes, that’s exactly what I used to think!

But that’s not the case.

Many children with Autism have associated sensory processing issues.

To you and I, food is a must, food is mostly delicious (So long as I haven’t cooked it!) and we know, we need food to stay alive.

But for a child with autism, food can be torture and can easily overload a child senses. The smell, the look, the taste, the texture, even the sound, either while it’s being cooked or the sound it makes it makes when chewed can be overwhelming and just too much to bear.

We happily dish up a combination of foods, plonk them on a single plate and think nothing of it! Well in my house you would be hung, drawn and quartered – Your crime? Cross contamination!

And then there’s the social element of meal time!

We all sit at the table, practically touching each other, and have idle chit- chat! Autism hell!

For many children with autism it’s not only about how food makes them feel but also about how other people make them feel.

To watch others eating the food they hate makes them feel physically sick, having to listen to every crunch, chew and suck is torture.

They then have to deal with all those eyes in close proximity watching them, and pressurising them to eat.

Throughout mealtimes they are expected to sit still on a chair with their legs dangling in space, leaving them with no concept of where their body is. They have to eat politely, use cutlery correctly and remember their manners.

Equally, there is always that expectation hanging over them that ‘they MUST eat their dinner or they’re in trouble!’

Sounds like a breeze ah?

No!

Anxiety rises, demands are intense, expectations are high, sensory overload takes hold, stress kicks in and they need to escape!

The Freeze, Fight or flight mode takes over.

So it’s not surprising that they refuse to eat their dinner or try new foods!

And that’s why kids with autism eat chicken nuggets!

Chicken nuggets are safe! A chicken nugget is plain and it’s predictable! There’s no variation, a chicken nugget is a chicken nugget!

Beige foods are great! Name me a beige food that is full of flavour? Nope you can’t! There isn’t one!

Chicken nuggets- plain

Pasta – plain

Bread – plain

Cracker – plain

Waffle – plain

Chips – plain

Cereal -plain

Cheese – plain

And MacDonalds! Well that’s the best place in the world!

Why? Because it’s tasteless, and predictable. It’s guaranteed that you get exactly what you’re expecting every single time!

If they can control one element of meal time, then they will have more resilience to cope with the rest of the mealtime anxieties.

As a young child Aiden had this love of chicken nuggets and still is obsessed with McDonald’s! However, he has progressed slightly! His go to now is pizza! I know, not much of a progression, but we celebrate the small steps! We have even moved to bbq sauce rather than tomato! (Normally a whole bottle at a time!) 🤣

Aiden would eat pizza for breakfast, lunch and dinner if he could!

Aiden has a restrictive diet but we struggle with his weight due to his obsession with junk food. However, I know many parents are the opposite and worry the nutritional value their children receive due the limited food groups.

Let me reassure you. Most children, with or without autism, eat enough from each food group to keep them going, even if they only eat plain mostly beige food.

It’s worth keeping a food diary of what they actually eat, you’ll be surprised how much they eat compared to how much they need.

Chewable vitamins, mixed in with a packet of Haribo’s or vitamin drops mixed in with tomato sauce works well too.

Think back to your student days! It’s amazing how long you can survive on pot noodles and alcohol!

My advice is to back off, relax and take away all pressures around mealtimes.

Work on one issue at a time.

Decide what the most important part of mealtime is to you and work on this one first.

Is it a battle worth fighting?

If they eat the same food for lunch day in, day out, does it actually matter?

If you feel sitting at a table is the most important, so you can go out to eat in public, then go this this one.

Firstly, give them food you know they’ll like. Write a weekly menu so they know in advance what the food is. Involve them, let them choose.

Rearrange the table so they are far enough away from everyone to feel comfortable.

Get a block for their feet, so they feel grounded.

Don’t put them in the lime light, talk amongst yourselves, if they want to join in the conversation, they will.

Give them a timer so they know there’s an end.

If they don’t eat, don’t punish them, instead, thank them for joining you at the table.

Take one step at a time. It can take years for a child to even touch a food, let alone eat it.

Once they realise the pressure has been taken off, they will relax.

Make more opportunities to sit at the table so there’s more time to practice.

Don’t let your anxiety become your child’s.

The 3 P’s are crucial for success.

Patience, Persistence and a Peaceful environment.

Disclaimer: If your child is underweight or you are concerned, seek medical advice but take your food diary with you because that’s the first thing they’ll tell you to do.

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