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.

Does your child with Autism swear and use inappropriate language?

All children learn how to speak by copying, but of course, along side that they pick up accents, phrases and of course those unwanted expletives!

Some children with autism have echolalia, where by they repeat words or phrases automatically and without any awareness of their actions.

Others with autism have a fantastic memory for words and phrases and are very good at mimicking accents and phrases and simply love the feel of talking in such a way.

And then there are the children with and without autism who know very well that some words and phrases get great reactions when they say them, so say them all the more!

The latter one is Aiden! Admittedly, Aiden does copy phrases from films and those around him, in fact most of his conversation is copied but more often than not, especially in his younger days, he loved a shock reaction.

When you’re 4 or 5 and very cute, adults find the odd expletive coming from a little one highly amusing but as we know with autism, these social misdemeanours are not something that our children automatically outgrow.

So how do you deal with inappropriate words and phrases?

Of course every child is different and has different reason for using these words – equally they react differently to every situation, so there’s no one size fits all solution. The most important part of these situations is that you understand their reason for using this language before you begin to work on a strategy to combat this behaviour.

If it’s echolalia then there is absolutely no point in addressing this with your child because they will be unaware of what they are doing. This is something that you as parents will need to address, in terms of what they are watching and listening to.

If you have children who love words and how they sound, then again, it’s about screening what they have access to, there’s nothing more sensory and enjoyable that a angry American with a broad accent screaming “You f**king son of a bitch!” They only have to hear it once and they’ll be repeating that in the middle of the supermarket! Having said that, a child with the love of such words, is also likely to have the ability to learn when such words are appropriate to use, although this won’t happen instantly and will take time to establish. Be prepared for those embarrassing moments for several years but don’t let autism be an excuse. If it is not appropriate they need to know from an early age.

However, often children on the autistic spectrum have a bank of words and phrases that they use as a coping strategy when in crisis. When a child is anxious and needs to escape a situation, telling someone to Piss off or I’m going to rip your F**king head off, works really well at getting that person away! If this is the case, that is not a good time to start punishing for bad language. This is a time to ignore the inappropriate behaviour. The priority here is to get them back to a calm state and make them feel safe.

Sometimes children use these words to express their anger or upset and again this is not a good time to challenge their choice of words.

But if you know your child is using swear words simply for a reaction then you need to address this. But how?

Looking back, dealing with Aiden when he was younger was much easier than now at 19. If he swore as a child it was inappropriate, easy, that’s black and white.

But now he’s 19 it’s not that straight forward. Adults do swear and that’s accepted. Aiden is legally allowed to watch 18 films which frequently include swear words. Hearing swearing becomes unavoidable, so what’s the rule?

Well for us, my rule has always been: in my house or in my ear shot you do not swear.

When Aiden was younger he would test those boundaries, but thankfully not that often. That doesn’t mean he didn’t say inappropriate things because my God, he absolutely did, and still does! He would and does say really awful and hurtful things, but he rarely swore unless he was in crisis/meltdown mode.

I put this down to my non PC approach, which I am not advocating, but maybe it just might have worked.

One day, when Aiden was about 5, he was in the bath and he was refusing to get out. He loves water. Anyway he swore directly at me. I replied in a rash and shocked state with a phrase my parents had always said to me! “If you say that again, you’ll get soap in your mouth!” The soap was in my view and the words just came out before I had a moment to think! Well sure enough, Aiden said it again. Now what? First rule of childcare, always ensured you carry out any threats you make. So I had no choice! Apparently squirty soap tastes discussing and from there on in, one reminder of the squirty soap bath incident was enough to keep those unwanted swear words at bay. Well, out of my earshot at least, that was until he hit those teenager years. Then he began to test those boundaries again.

As a teenager Aiden used such language at school and college in a social context which proved to me that he was in control of his choice of words. So when he tried using them at home my tactic was to ignore. Not ignore the swearing because he would not understand that and would have thought I was condoning it, so instead, I would ignore him! Let me explain.

Aiden always gets a warning so he knows what he’s done wrong, and is told what the consequence will be if he chooses to do it again. That way there’s no surprises and it’s his choice.

Here’s what I say:

“Aiden, if you say that swear word or any other swear word again, I will not be speaking to you for the next 19 minutes (or however old he was, in minutes), because I do not like my children using that language in front of me.”

Aiden, generally is very needy, even more so when he was younger, he followed me round like my shadow, often never stopped talking and needed my reassurance for most tasks, so for me to be disinterested and not answer his million and one questions was torture for him. Obviously this won’t work for all but it definitely worked for Aiden.

Whatever consequence you use ensure it is instant and over and done with quickly so they understand swearing = a consequence.

Make it a rule and stick with it. My advice would be to start as early as your children learn to speak that way you have a long time to practice.

And remember, what a child with autism does at two years old, they will continue to do at 12 and 22, unless you teach them otherwise. So if it’s not appropriate address it quickly.

Autism Siblings Need a Break Too

This week has been a tough week for Aiden. Not only has it been his last week at his much loved college but it’s also been his sister, Jasmine’s, 12th Birthday. Emotion overload!

Aiden really struggles with other people’s birthdays, to him it’s just another day. He can’t cope with the fact that plans will change, people will come to visit and someone else will be getting presents!

Jasmine on the other hand, loves her birthday and rightly so.

But it’s easy to forget that it’s not just Aiden that struggles with birthdays.

As a result of Aiden’s struggles, his siblings struggle too.

Jazz is in her first year of secondary school which is full of new children. There were only a handful of kids from her primary school that went up, so shes desperately trying to make new friends.

Jasmine’s birthday was drawing nearer, but every time I asked her what she would like to do for her birthday, she would change the subject or say, I’ll just do something with our family.

I suggested a sleepover with some friends but she was hesitant. After much probing she finally plucked up enough courage to say that she was worried about inviting her friends over because of how Aiden might behave.

Jasmine loves her brother and is incredibly proud of him. She always helps him, and is so patient and understanding towards him, but sometimes she deserves a break!

Jazz knew Aiden would be stressed about leaving college and on top of that she knew he wouldn’t be happy because it was her birthday, so didn’t want to make it a big deal and cause him anymore upset.

But that’s not a 12 year old’s responsibly, that’s ours!

I’m lucky enough to have my parents close by and they kindly offered to have Aiden for a sleepover for that night?

Friendships are so hard, especially when your 12, Jazz needed a night where she could be herself and not have to worry about Aiden dominating the house or saying inappropriate comments towards her new friends on their first visit to our house.

She said she felt extremely guilty for not wanting him there and I understand that’s so hard for her. I explained to her that it’s ok to feel like that because often I feel this way too.

I also explained that it’s no different to me having a night out without the kids and I definitely don’t feel guilty for this, I need that time. If she wants a night off from Aiden or all her brothers, that’s ok.

Often siblings understand far more than we give them credit for and try to tackle situations on their own.

Had I not pushed for her to have her friends over, she wouldn’t have. She never wants to do anything that will upset anyone else and she try’s so hard to do things to make my life easier. But by doing this means that she misses out on being a normal 12 year old.

It’s really important that she can tell me how she feels so that I (as the adult) can support her and try and release any burden that she may feel.

We make sure she has her own activities so she can have something else to focus on away from the house and she has her new Puppy, Buddy, as her room mate. We have Mummy and Jazz time, even if it’s a quick costa or a movie at home and this is really important. She needs to have the opportunity to speak to me without the others earwigging.

I can’t change the reality but it’s times like this that just reinforce the need for these breaks and remind me just how sensitive kids really are, no matter how grown up they seem.

Autism and Death – Say it like it is Aiden!

Recently we’ve experienced the death of a much loved family member. The children’s Great Nanny, who in our house was always referred to as, Ninja Nan! Why? Because somehow she had the knack of winning every card game. It was only as the kids got older, that they wised up to her secret cheating. She was Ninja through and through!

Ninja Nan was 89 and she’d had a good life, so although it was an incredibly sad time, it was one to be expected.

However, I was not expecting the whole experience of death to be quite so pragmatic.

Let me explain.

“Aiden, I have some sad news for you… Ninja Nan has died”.

Aiden – “Am I meant to cry? Because I don’t know how to!”

“You don’t have to cry Aiden. I just wanted you to know and to explain why Dad might be upset.”

Aiden replies, “Well, we all die when we’re old. You’ll die soon! Nan was a Ninja so she just managed to put it off for a bit longer”.

Great! Thanks Aiden!

Ninja Nan lived four hours away from our house, so the funeral was going to be a road trip away.

We decided all the children were old enough to attend the funeral. This would be their first ever funeral. And for the three younger ones, they wanted to go.

Aiden, on the other hand, was having none of it.

Aiden loved his Nan, he always gave her a hug when we left, which for Aiden, is a rarity, and therefore, actually said a lot about how he felt.

A funeral however, was an unknown entity for Aiden. He knew there would be expectations of him but he was unsure what they were. He knew it would be an occasion full of sadness with people crying, but he didn’t know how to do that. He knew there would be people he didn’t know, who would want to talk to him, and that filled him with dread.

Due to Aiden’s lack of communication skills he was not able to voice these anxieties and instead, as always, he expressed them in the only way he knows how. He was negative and angry. Consequently this behaviour resulted in him appearing as selfish, uncaring and rude.

“I’m not going to the stupid funeral! It’s on a Thursday, I do my work experience on a Thursday and I have football and basketball so I can’t go… And, that’s my MacDonalds day! I’m not going!”

This went on for the two weeks before the funeral, with the anger and intensity building every day.

The night before the funeral, while frantically searching for clothes which would both be appropriate and actually fit him, he was still adamant that he was not going.

Aiden’s refusals start off by him joking around, this moves on to him repeating himself over and over, and it’s this self talk which quickly builds into him being highly angry and inconsolable.

This was going to be fun at 5am the next morning, our planned, prompt departure schedule!

So why make him go?

This behaviour was actually the result of fear. His fear of the unknown. I knew what this unknown entity entailed, and I knew that he would be able to cope with it, once we were there.

We just had to get him there!

5am came, and sure enough, as predicted, he refused to get dressed or get in the car.

The MacDonalds bribery came into full force! “You can have it for breakfast and lunch Aiden!” Sweets, chocolate and pizza were also offered! Food is the bane of our life with Aiden, but sometimes it has its bonuses!

It half worked, he got into the car! Still wearing his pj’s, but that was ok. We were just grateful he had some on! Phew!

All the other kids were on strict instructions not to so much as even look at Aiden, for at least the next half an hour.

As it turned out we needn’t have worried. Aiden simply refused to speak, or even look, at any of us for the entire journey! Four hours of peace and quiet, it was great! He slept for a bit and then continued to pretend to be asleep for the rest of the way. He’s a great actor. It was quite comical really.

We arrive, and after a little persuasion from his auntie, that was us using the change of face tactic, he snapped out of his mood. Hooray!

Next up, the funeral.

We took Jasmine’s new puppy, Buddy, with us, as a gentle distraction for Aiden. If he needed to leave the church or a situation he felt uncomfortable with, he could use Buddy as an excuse. Great idea, or so we thought!

At one point, Aiden was looking really awkward after being approached by some distant relatives, he was struggling for conversation and looking at me for support. I go over and give him the puppy as rehearsed.

“Aiden, I think Buddy could do with a little walk, would you take him for me please?”

“No, I don’t like the puppy, give him to Jasmine, he’s her dog!”

Great, well done Aiden! That worked well.

As we walk from the church to the burial, we explain that after the burial we will go to the pub for the wake.

“Well that’s a stupid name, Nanny’s not going to wake up is she? Why don’t they call it, a sleep?”

With that, the hearse travels passed us, followed by a black limo, carrying the immediate family. The children’s Nan, Nanny Coxhead, was one of them. She gives the kids a reassuring wave but I knew they didn’t all see.

“Ah look, there’s Nanny, did you see her? She was waving at you?” I say.

With that Aiden and Jazz both look at me in horror!

And Aiden says, completely straight faced, “What? So she does wake up?”

Oh no! What have I said? Quick Vicky, back track, and think fast!

“No, not Ninja Nan, it was your other Nan, Nanny Coxhead, in the car behind.

We cleared that one up at moved on.

We arrived at the grave side, all is quiet and Aiden announces that he has a suggestion to make. This was, as it turns out, a very sensible suggestion, it’s just unfortunate that he happens to have an incredibly loud voice.

“Can I make a suggestion? he begins.”

I cringe! Oh no! What’s he going to say?

He continues… “Jasmine, I would suggest that you don’t put Buddy down while we are here, because he might end up in that hole with Nan, and I’m not going in there to get him out!”

Desperately trying to keep my somber face, I reply, “Great suggestion Aiden, thank you. Jazz make sure you keep hold of Buddy”.

At this point, I did question myself about why I made him come?

It was an eventful day. And aside from a few hiccups along the way, it was a very successful one. I was extremely proud of Aiden, and his siblings, they were amazing and all coped remarkably well.

The wake was lovely. It was in an old pub which looked beautiful. However, it did have some rather low beams. Aiden, being 6ft 4 and who has no spacial awareness, was unable to navigate these beams without hitting his head. No matter how many times he attempted it, he still smashed right into them. It was great entertainment for his siblings, who giggled hysterically every time, and thankfully, Aiden found it quite amusing too.

Aiden’s only wish, once he’d settled into the day, was that we returned home in time for Love Island. He’d fixated on this thought early on, and it had given him a topic of conversation for the day, so we felt it only fair to support this request.

Aiden masks his anxieties really well in public, and by coping so well, it’s easy to forget the fear he had felt prior to the event. But his actions when leaving the wake reminded me just how confusing he finds the world.

As we left, he followed the lead of his brothers. They were saying their goodbyes, shaking hands with the men and hugging the females. Only Aiden didn’t grasp the finer detail, and instead he’d associated shaking hands with introducing himself, which is something we’ve taught him. So rather than saying goodbye to the people we’d spent the day getting to know, along with the rest of the family, which obviously we know really well, Aiden approached them all, shook their hand and said “Hi, I’m Aiden” and off he went, on to the next.

To be honest people didn’t really notice, even I only realised at the end. Everyone knew we were saying goodbye and just went with it, but the boys, Aiden’s brothers, found it highly embarrassing. Although, equally they we’re also proud of him for having the courage to approach them all in the first place.

The car journey home was far noisier that the outward trip, but full of happy vibes.

Aiden’s lasting words on our funeral day which will always stay with me and make me smile were:

“It’s a good job people only die once and don’t wake up because that would just be a waste of tissues” .

What does transition actually mean for children with autism and their parents?

When we were told Aiden had autism our whole life flashed before us. Will he ever be independent? Will he ever work? Will he ever move out? And then without having time to think, those thoughts were pushed aside and our upturned life was consumed by simply living in the here and now.

My default phrase became: Let’s just reach one milestone at a time. Let’s just concentrate on getting him into the right school. Let’s just concentrate on being able to leave the house without a major meltdown. Let’s just concentrate on sharing our time equally with his siblings. Sound familiar?

Life with all its trials and tribulations is all consuming and before you know it, you have an 18 year old who is no longer a child. Now what?

Having a child with additional needs means your life involves so many other people and consequently intrusions of your privacy. Decisions you make as a parent are not solely yours, they are discussed and judged by complete strangers who see or hear snippets of your life and are then duty bound to give a ‘professional opinion’, which, whether you like it or not, is acted upon. These decisions could conflict or completely override your parental choice. However, you become reliant on ‘the professionals’ decisions to gain access to services or support and will often compromise your judgments in order to, just get around the system.

The word ‘transition’ was flung around a lot throughout Aiden’s teenage years but without any real explanation.

Leaving school at 15 nearly 16 to move to college was one transition I understood, and one that Aiden found incredibly difficult. He absolutely loved his school and when he left, it was the first time I had ever seen him cry through genuine sadness.

This was a physical transition for Aiden and one that significantly affected him, but as a parent, it was the transitions in services that I was not prepared for and wish I had understood more about. Let me explain…

To coincide with this transition, the DLA benefit you receive, for your child, as a parent changes to PIP and this benefit becomes your child’s responsibility.

Would any 15 year old be capable of understanding our benefits system? Would they know how to budget for themselves? Or understand the full impact of their actions and decisions? Of course not, so why they expect a child with as additional needs to be able to is beyond me.

Surely, if this benefits change happened at 18, some young recipients without learning disabilities, might be better prepared to take on this responsibility independently.

Anyway, in order to allow you, as their parent, to take on this responsibility, your child has to agree for you to be their appointee! (Like Aiden has any idea what that even means!)

Once that’s in place and you’ve filled out the 50 million page PIP document, your child then has to be interviewed by a complete stranger. They are grilled about how their disability affects them in life. In Aiden’s case, his disability is one that he’s completely oblivious too! Aiden does not see him self as different or disabled at all! He doesn’t have the ability to understand his disability. Equally, we have spent his whole life celebrating what he can do not what he can’t.

I’m aware how other 16 year olds present (I have been a sixteen year old, and I also have lots of friends with youngsters the same age) but Aiden had been surrounded by 16 year olds just like him, so he knows no different, and for him, that’s exactly how it should be.

However, all those times when people have said you shouldn’t compare your child against others, when it comes to getting support, you should. You need to be mindful of the typical milestones their peers are reaching so you know what support they will need. They have the right to be equal.

Quite often our special needs bubble becomes the norm and we easily forget the outside world.

Thankfully for this particular transition we had a great social worker who, on this occasion, agreed with my judgment, and was able to give enough information to the PIP team with an interview. But I know many who have not had this support and perhaps next time we might not be as fortunate. Because remember, in three years time you have to do it all again, just in case their disability has suddenly vanished!

Just when you get settled into college life that ‘transition’ word comes back around to bite you on the bum!

This time, Aiden had to move from children’s services to adult services. Again, Aiden was completely oblivious to this transition, but we weren’t! The work involved to ensure he received the right amount of support created a great deal of stress and uncertainty for us.

It’s a full time job caring for someone with autism, no matter how functional they may seem. It’s the work that goes on behind the scenes that enables a young person to function and become established within society. The most able people with Autism or Aspergers will have a dedicated, caring person behind them, refuelling them, organising them or supporting them emotionally.

This transition from child to adult services is massive! Getting it right is imperative to ensuring your child receives the support they need to help them in the real world throughout adulthood!

Those questions that flashed before me when Aiden was diagnosed are still there, although now he’s ‘technically’ an adult they’ve become the questions we are faced with answering today.

Will he ever be independent? Will he ever work? Will he ever move out?

I’ve come to realise that as a parent of a child with additional needs, it’s only me that can answer those questions. That’s because, actually it’s up to me to make the answers to all of them have successful outcomes.

Parents are the ones who make it happen. This is probably true for all children, even those without a disability, but it’s certainly the case when it comes to those with additional needs, like Aiden, because he can’t and never will be able to answer them.

Will he be independent? Well, that depends my meaning of independence. I believe Aiden is already very independent and this is something we promote and develop every single day. Will he be independent like you or I? No, I don’t believe he will. This isn’t me being pessimistic, this is the reality. His disability will always mean he’ll need support with many aspects of his life and actually, that’s ok.

Will he work? Well again, it depends what you see as work? For me, that’s having a job, be it paid or unpaid, that gives his life purpose and meaning. Yes, Aiden most definitely will work. As his parents, we’ll have to work incredibly hard to ensure he gets that working experience but together we’ll help him find something that plays to his areas of interest and skills so he can succeed and feel valued.

Will he ever move out? Again, I’d like to say that’s up to him, but the reality is, at the moment, it’s up to us. Does Aiden want to move out? Well, he doesn’t really understand the concept. He knows what moving out means but does not understand what that entails. He may learn this as he gets older and if he decides that’s something he’d like to explore, of course we will make that happen too, but right now we believe he’s not ready.

Whether you have a 2 year old or a 12 year old, those transitional years will be here before you know it.

So here’s the reality. No professional explains to you the process of transition and they definitely don’t tell you what support is available for you or your child.

So my advice? Speak to as many other parents as possible who have been through the system to find out what’s available. Make sure you know what other typical children are doing at the same age and gauge your support package around it.

And remember, YOU are the most important person in your child’s life because it’s YOU that makes it happen.

Why exam season in our house has been a breeze.

We’re coming to the end of Year 11 for my number 2 son, Morgan, already! How did that happen? It only feels like yesterday he was starting school!

Wow, what a journey he’s been on. Diagnosed with the life limiting condition Cystic Fibrosis (CF), at the age of one, followed by an ADHD, dyslexia and disgraphia diagnosis on his seventh birthday, it’s fair to say it’s not been easy for him.

School life has been a bumpy journey and that’s mainly because of our autocratic, inflexable education system.

By the time Morgan was six years old he absolutely hated himself, he couldn’t control his impulsivity and knew his behaviour was inappropriate. People saw an irritating, cocky, fearless boy, who appeared to be full of confidence – he wasn’t one to hold back and certainly spoke his mind! However, underneath that bravado was a kind, caring, clever, yet insecure little boy who felt like the world hated him! Leaving him with absolutely no self-esteem!

He was desperate to change, constantly asking me to fix him and crying out for people to just understand him. To watch your own child go through such trauma is heart breaking.

We came to the decision to give him medication – yep, that taboo word – Ritalin!

For us it was a no brainer! Morgan was taking multiple tablets everyday just to stay alive (due to his CF), so what was one more? And that ’one more’ which maybe would give him the happiness he was so desperately seeking.

Well thank goodness we did! What a difference it made! The school which had only seen a naughty little boy, were absolutely gobsmacked with the change in him, which happened literally over night.

From that moment primary school became a breeze. Not because he could suddenly sit down for long periods of time and do his work, because he absolutely, still couldn’t, but the impulsively was significantly reduced and it had given him the time to think about his response before he acted.

Morgan changed primary schools when we moved to Cornwall which was a successful transition thanks to kind, understanding teachers at a small village school.

Sadly this wasn’t the same story when it came to secondary school.

With too many different teachers in one day and over a thousand pupils, Morgan became a number. A complex number who didn’t fit neatly into their production line.

With hormones changing and school breaking down we decided to take Morgan off the Ritalin. It had done its job, Morgan, now older, could control his impulsivity, so it no longer served its purpose. Medication could not change the school system!

Morgan’s anxiety around school rose and consequently his behaviour and the all important self-esteem and self-worth deteriorated, until eventually after three and a half years of what must have felt like torture, he simply refused to go.

But here’s to a happy ending! Morgan left school early and started a pre 16 course at college with the support of a fabulous one to one assistant and has excelled!

Morgan is currently taking his English and Maths GCSE’s along with a B-tech in sport.

Will he pass his English and Maths this month? Well quite frankly I don’t care if he does or not! Does he deserve to? 100% yes! But, a GCSE does not define a person. Morgan has had a successful year in college and mentally is now a completely different person!

Environment is everything!

Morgan knows he does not need 12 GCSE’s to prove his worth, he does not even need 1!

Morgan will be successful in the real world because he is a kind, funny, innovative and personable human being! And thankfully and more importantly he is still here to tell the tell! I hear of so many young people that have been beaten by our inflexible, autocratic system especially at this time of year!

Don’t get me wrong, school can be a successful place for millions of children but that does not make it the right place for everyone!

Equally you do not have to take 12 GCSE’s, it is not law! Take 12, Take 3, take 1, or don’t take any at all because in life, it does not matter!

We are all human! But we are not all the same!

If school is not working, find another way!

If your school is telling you, ”this is the most important time of your life” and ”your GCSE’s are the key to your future” then they are talking utter shit!

YOU, are the key to your own future! A happy, kind, innovative person who can interact with other people in society is the MOST important thing in life!

Who makes the rules in your life?

Aside from the law, life comes with it’s own set of invisible societal rules which, as a parent, we feel we are expected to follow.

Children should sit down when they are eating.

Children should use a knife and fork.

Children should go to bed when they are told, and at a reasonable time.

Children should be out of nappies before pre school.

Children should say please and thank you.

You know the ones, the list is endless.

When our children do not conform to these rules we, as their parents, feel like we’ve failed.

Well, allow me to let you into a secret!

As a parent, well actually, as a human being, you have your very own mind, body and soul, well, that’s no secret, however, the secret lies in, who is in charge of making the rules!

YOU ARE!

The rules you make are not set in stone! Rules CAN change! And more importantly the rules you make do not have to conform with those societal rules.

Yes, conforming to the world’s norm, those societal, unwritten rules is the ‘easy option’. I’m not suggesting they are easy to adhere to, but easy, in the sense that we naturally take them on board as the norm, and we happily except and allow them to become our own personal rules. However, this ‘easy option’, that we all know and strive to adhere to, is NOT the only option.

If you or your child feel like a failure everyday because for whatever reason, you or they can not abide by these rules that you (or society) have created then, change them!

If you change the way you think you and your child will succeed. Let me explain…

Morgan has ADHD and as a young child he never went to sleep before 10.30pm. (it’s even later now!)

Does that mean as a parent I failed everyday single day for not ensuring my child was in bed at a reasonable time?

According to those unwritten societal rules, yes I did, I failed! I was one of those crap parents!

How did I feel? Yep, pretty crap!

I used to spend many a night, screaming, shouting, crying, threatening and punishing him for not going to bed when I had told him, at what I believed to be an appropriate bedtime for a child of his age.

I was angry and stressed because I felt like a complete failure and he was angry and stressed because I was cross and upset with him. We both dreaded bedtime.

Who won? Nobody!

Eventually, I was able to stop and think about what I was doing and rethink what I was actually trying to achieve. Thankfully, I realized that I was actually trying to adhere to an expectation that didn’t fit my values.

I believed, and still do, that bedtime should be a calm time, where you can talk about the day, read a bedtime story, relax in a safe environment and look forward to the new day ahead.

This was far from where we were!

I came to the conclusion that these values meant more to me than following the expected societal norm, to have my 4-year-old in bed by 7pm! So I changed the rules!

For our family this meant, as a younger child, I would expect Morgan to be in his room around 8pm (I love him dearly, but I’d had enough of him by then!) he would generally entertain himself for this time, with that well known virtual babysitter, the ipad (another unwritten societal view). I knew that Morgan didn’t ever fall asleep until 10.30pm at the earliest, so, the bedtime routine began at 9.30pm. It was calm, he had a bath, we read a story, talked about the day past and the day ahead. He was tired by this time and he went to sleep.

Who won? We all did!

I was no longer a failure. And more importantly, Morgan was no longer a failure. I had stopped setting Morgan up to fail, he was no longer three and a half hours late for bed. 7pm, that evil hour in my head, the time that I used to dread, just became another number on the clock and the bedtime routine became one hour of calm instead of three and a half hours of hell.

Did society still judge me as a bad parent for allowing my child to go to bed at 10.30pm? Yes of course, but, they did when I was failing at the 7pm bedtime routine so, there’s no escaping! At least this way, he was able to follow my new, yet achievable rules, we were both calm and we were both happy.

Of course, it’s not really a secret, but, I feel it’s something that we often forget.

You are in charge of your own mind! You are in charge of making the rules. Make rules that work for you and your family, don’t lose sight of your values, to for fulfil someone else’s expectation.

Changing the rules will abort failure and create success and will transform sadness and stress into happiness and achievement.

Why Children with Autism have the ’need for a purpose’.

According to Aiden, we spend our lives doing pointless activities.

Why would you – go for a walk?

Why would you – get dressed if you’re not going out?

Why would you – get another dog when you already have one? (this is a sore subject for Aiden, in our house, right now)

There are so many daily events in life that, apparently, serve no purpose!

Let me explain Aiden’s logic.

If you are walking to the shop, you have a reason to go, if you are taking the dog for a walk, there is a purpose to walk, but, if, however, you simply, go for a walk, well, more fool you?

In Aiden’s world, there is just no point!

We spent years coaxing, bribing and practically dragging Aiden around the woods for what we thought was a fun day out!

Seriously, how stupid were we? Not for not thinking in the same way, but, for continuing to take him and hoping, that one day he might, suddenly, enjoy it!

There were countless times that I would be left in the middle of the woods, whilst on walks with friends because he would refuse to walk any further! I was screamed at, shouted at, hit, kicked and even pushed over, in the mud, but we still continued to go on walks, ’for fun!’ When I look back, I seriously have to question who it is, that has the learning disability? (jeeese, I’m a slow learner!)

So what would I have done differently?

If I had my time again, would I still take him?

Yes, absolutely, I would still take him to the woods, because the rest of the family enjoyed it. However, I would have not taken him on the walking part. We would generally go to a woods which had a picnic area and a park, so I would just stay there with him.

I know, I can hear you, but, then your other kids would miss out on you being with them. Well, they missed out anyway, because I was dealing with him screaming. Life with a child with autism is full of comprises, especially for the siblings, at least this way it would have been more enjoyable and peaceful for everyone.

Myself and Simon could have taken it in turns to go on the walk or if I was on my own because Simon was at work, the others could have just walked with my friends and their families.

Clearly, I was just as stubborn as Aiden, apart from, I was the adult and I was the one with the neurotypical brain which enables me to change my thinking and adapt, to accommodate others.

The reality was, I didn’t want to miss out and I desperately, just wanted him to conform. If I’m honest, I didn’t want to be seen, to be ruled, by my child!

When actually, if I had been brave and selfless enough to make the decision to stay back from the walk, there would have been no question about who was in charge. It would have reduced the stress and anxiety to Aiden and we could have all had a fun day out.

Please learn from my mistakes. If you know something causes immense stress to your child, change what you do and take the pressure off, because in the end, nobody wins and, actually, Aiden is probably right – there’s no point!

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