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!

Why children with Autism often play ‘The Blame Game’.

Ever since Aiden could talk, when something went wrong it was my fault. Aiden is now 18 and guess what? It’s still my fault!

Thankfully, over time I learned not to even bother arguing the point. Well, at least not in the heat of the moment. If by blaming me it means he can move on more quickly then I’ll take one for the team!

Unfortunately, I didn’t always feel this way.

Aiden’s autism causes the need for control and it’s when something doesn’t go to plan, that his need for blame is triggered!

I hate you! You made me do that! If you hadn’t have bought me here that wouldn’t have happened!

That’s the tame version! It used to be much worse, he would say things like: I can’t wait for you to die! You should never of had any other children, then this wouldn’t have happened! It’s your fault, you deserve it! At one stage in his repeating fashion – he had my whole funeral planned out and if I wasn’t dead, he’d have simply buried me alive! (I knew the conversation word for word) Cheerie ah!

I can laugh about it now but at the time, quite frankly – it hurt! I never in a million years thought that part of being a mum would involve being verbally abused by my own child and it took a long time to learn not to take any of it personally. Especially when he would say these things out in public or among friends and family. I just wanted the ground to swallow me up!

Once I accepted this was anxiety driven and it was simply his way of regaining control in an attempt to feel safe again, I was able to manage these outbursts far better and as a result, they were over far quicker and eventually became a rarity.

I noticed that once he stopped getting a shocked or negative response from me, he began to use less alarming phrases and began to learn how to regain control in more appropriate ways.

Interestingly, I was able to notice this, by the way he reacted differently to me compared to his Dad. Simon found it much harder not to take it personally and even now still struggles sometimes. Simons reaction heightened the anxiety and as a result prolonged the outburst.

I’m not to saying he didn’t still blame me! Oh no, he did and still does!

But here’s what we did: At home, we made Aiden a safe place. For us, this was his bedroom. We spent a lot of time using social stories, which firstly explained his emotions and then we moved on to stories which guided him to his safe place when he felt like he was losing control.

To explain and help him describe his emotions we used colours. Red (angry/out of control), Orange (bubbling/I need to go to my safe place) and Green (happy).

Once he was calm, we were able to move on to choices. I often knew why he had erupted – for example, the rules of a game had altered, or his food wasn’t how he was expecting. I would then, calmly, give Aiden two choices. Both would give him a way out of the situation and give him back the control but through this choice.

One choice would be something like:

1) leave the game – and do play something else.

2) don’t eat the food.

The other would be:

1) let’s go and discuss the rules with the others and explain to them why your upset.

2) take the food off your plate that is bothering you.

Wording and creativity was always key, because he’s certainly not easily fooled, but, generally it was about not being able to express himself in the heat of the moment and his instant reaction was rage followed by blame.

Aiden was never expected to verbalise his emotions or colours at the time of an outburst, only ever after, on reflection, and when he was calm, this might have been at much later time throughout the day but this enabled him to recognise his feelings over time.

Aiden’s still seeks control, in all aspects of life, however, he can now control his temper when in public (most of the time).

We and his home are his safety net, so he knows he can release his upset on us and we will not judge.

Just today on two separate occasions, he launched a ball over the neighbours garden in anger and refused to eat his dinner!

Obviously, both events were my fault, but, each time, he independently went to his room, slammed the door behind him and within five minutes he was back out collecting the ball and eating his dinner.

I asked Aiden before I wrote this blog if he still associates colours with his mood? He looked at me blankly and said: ” I think you’ve gone loopy Mum, I have no idea what you’re talking about!”

Love that boy!

Should children with SEND be forced to do homework?

Firstly my question would be, what is the purpose of homework?

Some say it’s to consolidate learning that has happened at school.

Others say it’s to enable children to develop independence and prepare them for revision in later years. Maybe it’s a bit of both.

Some children regardless of needs thrive at school and love nothing more than the challenge of homework, revising for tests and completing projects at home. Fantastic! These children should be celebrated.

Some children don’t want to feel different. For these children academics are a challenge to them and they don’t love completing homework, but they would rather do it, at a limited standard, than deal with the feeling they get from not doing it.

Other children, generally those with significant additional needs can not, will not, and point blank refuse to even entertain the idea of mixing school with home! And these are the children I am referring to.

So, should we, as their parents force them to do it?

Should we allow the school to punish our children for not doing it?

100 % NO on both counts!

Children As young as 4 spend 6 hours a day actively being taught a curriculum which they are expected to memorise and then regurgitate in a standardised test to prove their worth. They are ALL expecting to learn exactly the same and in the same way and if they don’t memorise enough, we as their parents are told our children are falling behind – another words ‘they are failing’.

Now let’s be clear here.

Your child is NOT failing! the system is failing your child!

Your child, like all children, regardless of any additional need, will learn at their own pace and in their own way.

Children that are so called ‘failing’ at school will find the school day an immense struggle. The speed of expected learning will be way too fast and they will feel like a sinking ship.

Their self esteem will be rock bottom and no doubt their behaviour will be reflecting their insecurities.

So when the bell goes at 3 o’clock and they break free from the prison of doom they finally feel safe, back in the arms of unconditional love.

As parents our single most important job is to love and care for our children, keeping them safe from harm.

You are not a teacher of academics!

The time we spend with our children is undeniably the most valuable time on the planet. It’s when we teach our family values, our beliefs and our traditions. It’s when we share our experiences and we express our emotions. In everything we do we are constantly role modelling expected behaviour.

We consciously and even subconsciously spend every opportunity building their self esteem by celebrating their personalities and each and every micro achievement that they make and most importantly we are the people that know and believe in our children.

In society we all harp on and on about having a work/home life balance. Those who bring their work home with them are stressed beyond content, suffer mentally and as a result their family life suffers!

So why do we think that it is acceptable for children?

It’s not! Children need time to be children, they need time to learn who they are and they need the time to be that person. They need time to partake and enjoy other aspects of life.

Learning at home happens all the time. A bedtime story, fun games intertwined with life to support times tables or science. Creating thank you letters. Knowing what topic is being studied at school and visiting related places as a family. Grow broccoli. Cooking together and eating your delights together (or in my case probably not quite so tasty delights). Laugh and have fun.

But DO NOT sit down and force a disengaged child to do homework.

Do not sign a home/school agreement to say you will do the homework set and do not allow your child to be punished by the school.

Go into school and have a meeting or write a letter.

You are not being a lazy parent or allowing your child to fall further behind – you are simply doing the single most important job a parent must do, which is to love, care, and keep your child safe from harm.

The picture is of Jazz and myself attempting to grow broccoli after I discovered at 11 years old she thought broccoli was made in a factory!

DLA & PIP – The 3 letter words that send shivers down my spine.

Image may contain: 4 people, outdoor

When I decided to have children the word benefits never entered my head! I was bought up with a great work ethic and enjoyed earning and spending my own money within my means.

After Morgan was born we spent the majority of his first year in and out of hospital, finally to receive his and Aidens’ diagnosis of the life limiting disease, Cystic Fibrosis at the age of one and five years old.

After coming to terms with this diagnosis, which will be another blog when I’m brave enough, reality set in about what this actually meant.

One certainty was that my career path was instantly shut off. Who would employ me knowing that at the drop of a hat I am likely to wind up in hospital for weeks on end?

The hospital, doctors surgery and chemist became my second home. They all knew me on first name terms and that tells you something. Even the most generous boss in the world will only take so much because at the end of the day they are paying you to do a job, so they need it done.

Suddenly we were thrown into the world of ‘benefits’ and on one hand I am truly grateful that they are there but on the other hand I live with guilt, frustration and fear of having them, which follows me everyday.

I am truly grateful because it has meant I can be by my children’s side through their difficult and unplanned journey and without them our lives would have been completely different.

Yet, I hold guilt from other people’s judgments that I am one of those ‘benefit people’, you know the ones, the ones that are ‘a drain on society and wasting tax payers money’. I think these judgments seem far more apparent for those who have invisible disabilities – my children don’t look sick! Look at the picture, can you tell which ones have disabilities?

I also live in fear! Fear that I am being watched, fear that I’m being judged and fear of anticipation!

Awaiting that dreaded brown envelope, the DLA/PIP renewal form, dropping through my letterbox is sheer hell. This is the 40 page document where I have to explain in great detail all the things my child can’t do, all the things that in life, I just used to take for granted.

I then live in fear that ‘they’ (the powers that be) won’t believe me, or that what I’ve explained is in fact, not disabling enough, or that what I have written and how that actually looks in reality are two different things which could somehow be seen as fraudulent.

They ask questions like ‘Do they need encouragement, prompting or physical help to take part in hobbies, social or religious activities? Or, do they need help when they are out and about? How many times a day you you need this help?’ And then expect the answer in minutes!

Disability is not measurable in minutes or with a simple yes or no or tick box answer how do you convey life into minutes?

And then there’s the biggest fear of all – after feeling guilty and fearful for receiving such a thing you begin to live your adapted life, you are then tasked with the thought that ‘they’ are going to take it away!

Cystic Fibrosis is a life limiting, degenerative disease, like many other diseases and conditions it is not suddenly going to disappear or get better so why do So many people have to live in fear or something that was put in place to support them? This is where the frustration lies.

No amount of money will take away the pain, heart ache and trauma that is felt every single day by families affected by illness and disability but receiving this benefit does enable lives to be lived in a way that is more manageable.

The money we receive allows our children to live a life they deserve – an equal life to those without a disability.

Research suggests that is costs three time more to raise a child with a disability that without.

Yet, society has created stigma around that the word ‘Benefits’ and that needs to change, as does the benefit system itself. It needs to stop this fear factor ruining peoples lives. The change in the benefit system is sadly out of our control.

We can however, remember and remind others that people do not choose disability and this will go a long way in helping to change the stigma attached to ‘benefits’.

I have attached three brilliant websites which have step by step guide lines to how you fill out that horrendous DLA form.

https://skybadger.co.uk/2018/08/20/dla-form-a-step-by-step-guide/

https://www.cerebra.org.uk/help-and-information/guides-for-parents/dla-guide/

https://www.carersuk.org/images/Factsheets/DLA2018-19FINAL.pdf

For those moving over to PIP at the age of 16, here are some step by step guidelines.

https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/help-with-your-claim/fill-in-form/

https://www.disabilityrightsuk.org/sites/default/files/word/PIPGuidetoclaiming24october%202018.docx

Half Term – Hell Versus Happiness

Well this is a tricky one! For some, it’s a truly happy time, no school for a whole week, wahoo! but for others it’s a week from hell and this is true for both parents and children.

In my house the half term holiday holds mixed feelings. I work term time only so I personally relish in the fact that I don’t have to get up and out for the school run. Nor do I have to referee the morning routine or negotiate behavioural consequences or rewards if the kids can leave the house without killing one another, all at a time when I’m barely awake myself. Although, as I relish in that though I also realise that this means that all the kids are in the house together for a longer period of time and therefore they are far more likely to fall out with one another. Oh and there is that small issue of knowing there is NO break from them!

Thankfully, I have found that there is a positive side to having teenagers – they sleep in! See, it’s not all bad! Gone are the days where they would be up at the crack of dawn regardless of what time they went to bed or whether is was a holiday or not. No, now I have to drag their lazy butts out of bed before they miss the second meal of the day! Oh, obviously that doesn’t include the hyperactive one! No he’s always up and bouncing, music blaring and wanting to plan the day. And this is where those feelings become mixed.

Unstructured time is really difficult for some children yet others need the down time and the break for routine. I happen to have two that need routine and can’t cope without it and two that need a break and just need to chill. Arggg!

This is really tricky as a parent, who is always striving to please everyone.

Aiden, now 18, is naturally lazy, he went from what felt like the terrible two’s, which starting at birth and lasted a decade, straight into being a teenager! Not sure when we progress from here but I live in hope! Although, no matter how lazy he is, Aiden needs structure. He needs a plan, he ‘loves’ a plan but he just doesn’t know how to create one. What I mean by that is, if I didn’t organise his day, he would simply do nothing. If I didn’t make him leave the house, he wouldn’t. He would sit in front of the television 24/7, eat the cupboards bare and sleep at completely inappropriate times and this isn’t because he is a teenage boy, he has always been this way, he just has less tantrums now. He doesn’t seek social interaction and he doesn’t seek entertainment. As a young child he never played with anything, he just didn’t really know how to. Due to his learning disability he is still unable to play computer games (which I guess could be a positive) but he just doesn’t know how to occupy his own time. This is tiring as a parent because it demands constant organisation on my part. It also means it’s always ‘my fault!’ My fault for making him do something he doesn’t want too, or my fault for not making him do something he does want too! Either way, I made him do it, therefore, according to him it’s ‘my fault!’

It’s ok, I learned early on not to take to heart all the anger and upset that he directs my way because I know how much he benefits from the outings we have. His anger is anxiety and his upset is often his frustration through his lack of understanding. However, even knowing this, it doesn’t make it easy especially when you throw the other kids into the mix.

Anyway in true autism style and even with my lack of strong organisational skills we have a plan.

The plan consists of the weeks activities, the weeks jobs list and also includes plenty of time to chill and slump in front of the tele. This works for the sloth like teenagers because they know they are going to get their down time, it works for the hyper one as he can see when he has gaming/screen time and if he needs to add extra gym sessions to burn his energy he knows he can do it in these times and it works for Aiden, because it’s ‘a plan’ and even if he doesn’t like what’s on the plan he has time to digest it and can see that his tv ‘safe’ time is going to happen.

Equally it also works well for me! Breaking the days and week up into manageable size chunks doesn’t make the week seem like such a mammoth task. It also means at the end of the day, I know exactly what time I can chill and pour that well deserved glass of wine knowing that the kids have all had a happy day.

So thankfully for me this half term happiness wins but believe me, it hasn’t always been this way!

Get a plan! It’s hard work but hard work is far better than hell!

Skipping School – Part 2

This is my second blog to present what Channel 4’s, Dispatches ‘Skipping School’ Programme failed to investigate – the reasons thousands of children are being home schooled.


My second fight against ‘the system’ was very different to the first.  I didn’t need a special school place but additional support within a mainstream school. Children can legally secure this support via an Education Health and Care Plan (EHCP), which provides additional funds to a school who need to support a child with SEND (those with Special Educational Needs and Disability).  This fight is one I hear many parents battling and, sadly, loosing.  It’s one of the key reasons thousands of parents are being forced to home school their children – something Dispatches failed to mention.  

 

In many cases these are bright children – academically capable of achieving but require additional support to succeed. Many will have a ASD, ADHD, Anxiety or Dyslexia diagnosis. 

 

Some of you reading may think ‘yes I can see how school would be tough for these kids.  If you are a teacher, already overwhelmed by the amount you already do, you may well be thinking ‘don’t put them in my class, I haven’t got the time’. But many will likely see the label ADHD (Attention Deficit Hyperactivity Disorder) and will be making instant judgements about these kids. “There’s no such thing! It’s an excuse for naughty kids.  It’s bad parenting! Discipline – that’s what’s needed!” It’s hardly surprising, given how ADHD has been unhelpfully reported.  Those with ADHD aren’t any of these things.  And, with a supportive school system, those with ADHD would flourish for having what they actually possess:  additional abilities rather than a disability.  

 

Unfortunately, our school system, as it stands today, is a ‘one size’ fits all system.  It has experienced so many funding cuts that it is unable to support any child that is not ‘one size’.  It shuns, shuts out and basically shits on these small superheroes.  Here’s how


All children want to learn. All children want to achieveAll children want to fit in. But our school system doesn’t enable equality of access to this.  Instead those with additional needs are denied the support they need and are then criticised, blamed and punished for failing to fit education’s standard mould.  That seems unfathomable to me, when we’re continuously told our country will only prosper if people break the mould, think outside the box and are creative and innovative.  

 

Instead if you are one of these children with SEND what happens is this.  For six hours a day, you are told you are a failure by every adult you come into contact with.  You are repeatedly made to sit outside the classroom. You are then punished by given detentions and made to miss your breaks, lunch or stay for another hour after school – because you failed to complete enough work.  

 

Each day you are forced to walk around with your ‘badge of honour’, otherwise known as a ‘Behaviour Report Card’, just in case there was someone who hadn’t noticed that you are the kid that doesn’t fit in.  

 

And, of course, don’t forget the times when you are sent home because you hate the numbness of being medicated with Ritalin so choose not to take it but your teachers refuse you class entry because they’d much rather you numb than ‘naughty’. 

 

Unsurprisingly, these children, eventually, refuse to go to school. These are also likely to be some of the thousands of children who end up with mental health problems and some will even go onto make up those suicide statics. Yes, there really are thousands of children out there who would rather kill themselves than go to school.  Coincidentally, the Dispatches the programme, failed to report on this too.

According to the system these children with SEND have the academic ability to pass their GCSE’s and, therefore, do not need support.
According to the system children who present in this way are not ‘disabled enough’ to warrant extra support.
According to ‘the system without additional funding the school can not support them… so they don’t.

 

Many parents who request additional support are told by their school that their child won’t attract the additional funding because they’re too able, that the criteria is too difficult, that they’d be wasting the school’s time. But how can they possibly know that if they haven’t applied for an assessment? Even though our law states ‘any child who MAY have a special educational need MUST be assessed’ schools refuse to apply!

 

Parents are stuck.  They are left with a child that isn’t at school, has mental health issues and could even be suicidal. They are also left with the terrifying thought that they will be taken to court for their child not attending school. (Yes they can and do do this alot!)

 

For parents dealing with an uncooperative school, fighting the system, with the added threat of being taken to court, is simply a step too far during a time when their world, and more importantly, their child’s world, is literally falling apart.  It is heartbreaking but it is either fight the system OR home school.  That’s the choice.  Fighting the system is tough. Trust me. I’ve done it and thankfully won but you need to practically become a lawyer in disguise – and it’s not just knowledge you need but mental resilience.  Taking on the education ‘system’ is like going in the ring for 10 rounds with Mike Tyson – only it takes longer and hurts more.

 

Not every child can achieve 10 GCSE’s at level 5 or above – it doesn’t make them a failure.  Not every child learns in the same way, yet our schools expect them to. Our education system is setting many children up to fail, not just academically but mentally and it’s parents that are having to pick up the pieces. That’s the reality about why so many are home schooled. 

 

I think my heart sank most during Dispatches when the Children’s Commissioner – the person highest in the land responsible for advocating for children’s rights – said:  No matter how bad it is for a child in school, removing them is not the answer.


And there, I believe lies the real reason our country has thousands of children being home educated. The very ambassador with the top post for protecting our children, all our children, is simply blind or ignorant to what’s going in our schools. No parent of a child with SEND that I have ever met wanted to take their child out of school to home educate – but for the sanity of their child they simply have no other choice.    

 

If you are a parent in this position, I urge you NOT to listen to that advice from the Children’s Commissioner.  She’s demonstrated one thing for sure her ignorance of what families face.  Nobody knows your child better than you. Nobody is going to fight harder for your child than you.  And no ‘standard’ school or ‘one size fits all’ education system is more important than your child’s uniqueness, happiness and wellbeing.  

 

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