When animals and prisons have more rights than those with autism and learning disabilities

There are some blogs that tear me apart to write. This is one of them.

Today a government report was published with the title “The detention of young people with learning disabilities and/or autism.” You can read the report in full here: https://publications.parliament.uk/pa/jt201920/jtselect/jtrights/121/121.pdf

I read about it in the press today and cried. My own child has autism and learning disabilities. He’s non verbal, epileptic and he is doubly incontinent. I am not ashamed or embarrassed to say that at times his care needs are extreme and I struggle. Reading the introduction Members of Parliament wrote to their own report was like reading a diary and a glimpse into a future that could so easily happen to my family. Could this be your story?

Too often the pathway to detention is predictable. It begins from before diagnosis. A family grows worried about their child. They raise concerns with the GP, and with the nursery or school. It takes ages before they get an assessment and yet more time passes before they get a diagnosis of autism. All that time they struggle on their own with their worries and without help for their child. This pattern continues throughout childhood as families are under-supported and what little help they have falls away when the child reaches the age of 18. Then something happens, perhaps something relatively minor such as a house move or a parent falls temporarily ill. This unsettles the young person and the family struggles to cope. Professionals meet to discuss what should happen, but parents are not asked for their views. Then the child is taken away from their home and the familiarity and routine which is so essential to them. They’re taken miles away and placed with strangers. The parents are desperately concerned. Their concerns are treated as hostile and they are treated as a problem. The young person gets worse and endures physical restraint and solitary confinement – which the institution calls “seclusion”. And the child gets even worse so plans to return home are shelved. The days turn into weeks, then months and in some cases even years.”

The report says “we are inflicting terrible suffering on those detained in mental health hospitals and causing anguish to their distraught families.” It makes recommendations that it says are ‘urgent and not complicated’ but that ‘We have lost confidence that the system is doing what it says it is doing and the regulator’s method of checking is not working.

Let’s stop there for a minute. Here we have some of the most vulnerable people in our society having terrible suffering inflicted on them with our own government saying it has lost faith in its own system to protect them.

Would you believe me if I told you that the 2,250 children and adults with autism and/or learning disabilities detained in such places have LESS rights than animals or even prisoners?

Seriously!

Some basic research into the rights of animals showed me that they had the right to:

• need for a suitable environment

• need for a suitable diet

• need to be able to exhibit normal behaviour patterns

• need to be housed with, or apart, from other animals

• need to be protected from pain, suffering, injury and disease.

So why are children and adults with autism and/or learning disabilities denied a suitable living environment, a suitable diet, the right to exhibit normal behavioural patters, housed appropriately and protected from pain suffering and injury? If we (rightly) wouldn’t accept this treatment of animals why are we accepting it, as a society, for those with autism and/or learning disabilities?

What about prisoners who have committed crimes, broke laws and harmed others…none of which I might add apply to those with autism and/or learning disabilities locked up in these so called hospitals?

Prisons are inspected and prisoners have strict human rights including:

• protection from bullying and racial harassment

• being able to get in contact with a solicitor

• healthcare – including support for a mental health condition

All prisoners should be able to spend between 30 minutes and an hour outside in the open air each day.

Did you see that? Even prisoners MUST have time outside every day. Yet so many of the 2,250 children and young people wrongly detained in hospitals with autism and/or learning disabilities under the mental health act are denied this.

It tears my heart and souls apart to think that an animal or someone who has killed others has more rights than my non verbal autistic son.

I can’t accept that.

Can you?

Are We Diagnosing Learning Disability Often Enough?

Over his ten years of life so far my son has ‘collected’ a fair list of diagnosis. First he was given ‘severe autism with global developmental delay’, then six months later the genetic condition ‘Neurofibromatosis Type 1’, then a few years later two complex eye conditions, a year later a third eye condition (a tumour on his optic nerve), two years later epilepsy and in the last few months cortical dysphasia which at first appeared to be a brain tumour! Every one of those diagnosis was given by medical professionals, geneticists, therapists and neurologists. Yet one diagnosis seemed to just ‘happen’ over time that everyone knew about yet no-one spoke about: learning disability.

I knew my son was ‘behind’ others from as young as a few months old. He was ‘late’ to hold his head, give eye contact, respond to his name, speak, interact with his environment, crawl, walk, use a spoon and so on. There wasn’t anything in fact that he wasn’t late at. Before he was even two years old I was told verbally he had the woolly and hopeful diagnosis of ‘global developmental delay’. Wether intentional or not it very much gave the impression that one magic wonderful day my son would suddenly ‘catch up’ with everyone else and all would be perfect. When autism was talked about that became the ‘dominant’ issue and the global delay was rarely mentioned.

Until suddenly without anyone saying anything I received a standard letter from an appointment listing my son’s diagnosis and on it I read ‘learning disability.’ There was no appointment to diagnose, no waiting list to join and no discussion. His ‘global developmental delay’ just magically changed to ‘learning disability’ and that was it.

Yet for so many others that two worded diagnosis seems to never be mentioned. Why is that?

Party it seems to be due to an increase in genetic knowledge. We can now break down genes to an amazing level and more and more children and adults are being diagnosed with rare genetic conditions. While these conditions remain rare it is common for all ‘symptoms’ including learning disability to be generalised under the umbrella of the genetic condition. While years ago the opposite may have been true and the person had a general learning disability now we see the genetic abnormality to be the cause and therefore often lump everything under that one diagnosis. Perhaps as more people get diagnosed with the same genetic conditions we may find that not everyone with that condition actually has learning disabilities and therefore adding ‘with learning disability’ would be a more helpful addition to any genetic diagnosis.

Another reason seems to be the increase in autism diagnosis. I see more and more children diagnosed on the autism spectrum who do have clear learning disabilities but who can not get the latter diagnosed because of a (wrong) assumption that ‘it’s all part of autism’. Yet according to the National Autistic Association, the leading UK charity for autism here are the facts:

Between 44% – 52% of autistic people may have a learning disability.

Between 48% – 56% of autistic people do not have a learning disability.

Autism, on its own, is NOT a learning disability.

Autism, according to Wikipedia is described as follows: ‘Autism is a developmental disorder characterized by difficulties with social interaction and communication, and by restricted and repetitive behaviour. Parents usually notice signs during the first three years of their child’s life.’

Where as ‘learning disability’ is described by Mencap, the leading charity for people with learning disabilities as: ‘A learning disability is a reduced intellectual ability and difficulty with everyday activities – for example household tasks, socialising or managing money – which affects someone for their whole life.People with a learning disability tend to take longer to learn and may need support to develop new skills, understand complicated information and interact with other people.’

Mencap goes on to say that around a THIRD of people with a learning disability may also be autistic. By default that means two thirds are not.

Autism and learning disability are two very different conditions.

I am thrilled that we are progressing with genetic knowledge and diagnosing more and more genetic abnormalities and differences. With knowledge comes power. I am also delighted that we are becoming better at picking up both children and adults who are autistic. But I do hope we continue to make sure that everyone, like my son, gets a diagnosis of learning disability when necessary because without it we are denying both present and future support (it’s a life long condition), limiting educational support, and leaving children and adults feeling failures because they don’t understand why they are struggling.

Oh and let’s not only make sure we continue to diagnose learning disability when necessary but let’s make sure more parents, professionals and medical experts explain that global developmental delay is unlikely to mean ‘catch up’ and actually is just a fluffy pre-diagnosis to learning disability.

Let’s tell people the truth. There is no shame in learning disability so why hide it?

My son isn’t hiding his learning disability and neither should anyone else.

When Special Needs Parents Are Told: ‘We don’t have money for that!’

Earlier this year my son became very ill. A routine MRI carried out under general anaesthetic found a large area of concern in the right frontal lobe of his brain. He underwent 6 hours of brain surgery where a segment of his brain was removed for biopsy and it took months for him to recover. Add in the fact he has severe learning difficulties, severe autism, epilepsy, a progressive genetic condition and he’s not able to speak and might you understand why I was extremely concerned about his return to school last week.

It wasn’t until two days before school was due to start back that I finally heard about his transport arrangements, and when I did I immediately felt sick. I had just spent three months caring for him since his operation, and over ten years caring for him before that ,and I knew instantly that the arrangements to get my child to school were unsafe and put him, and others, in danger. Yet despite numerous calls, emails and letters, plus the backing of medical professionals and social work later and I was faced with the decision to either put my son in that multi occupancy vehicle or keep him home. Taking him myself isn’t an option due to distance, the fact I have another child and the fact it is logistically impossible to be in two places at once.

Why were my son’s medical, development and mental health needs ignored in favour of the cheapest option? Because, as I was told numerous times when I requested single occupancy transport,: ‘We don’t have money for that!’

Now I get that my son is costly. In the last six months alone he has had thousands of pounds of medical treatment free on the NHS including scans, tests, appointments, consultations and brain surgery. He’s had a hospital stay with twenty four hour nursing staff. Everyday he has very expensive anticonvulsant medication just to keep his epilepsy under control. He was issued a wheelchair free of charge and he receives incontinence products delivered to the home at no cost. No-one ever once said they couldn’t treat his brain mass that was making him ill because ‘we don’t have the money for that!’ No-one has ever said he can’t see his neurologist or neurosurgeon or any other specialist due to cost.

Yet all his medical and communication needs can be ignored in favour of the cheapest bid when it comes to school transport?

Then there is trying to ensure he has an assistant with him at all times in the school day. Apparently my local authority don’t allocate named one on one staff preferring the cheaper option of general classroom assistants to help wherever the schools feel necessary. Why? Because it’s best for the children, ensures every child’s needs are met and gives them the best chance of success while being kept safe? No! Because it’s the cheaper option.

Despite being non verbal at ten my son hasn’t received any input from speech and language for years. He’s never been assessed or offered an alternative communication device that could help ease his frustrations. Why? Because of lack of money!

I list so many more times when I have been told that what my child needs in order to be safe, nurtured, included, and able to achieve isn’t possible…because ‘we don’t have her money for that!’

I haven’t ever met one parent of a special needs child (or children) who hasn’t been told at one point or other ‘we don’t have money for that’ wether it’s respite, educational support, sibling support, mental health support or adaptation to their house.

‘Lack of funds’ is the single most given reason why families with special needs children struggle. It’s what affects the mental health of parents (and children) the most. It’s what deprives millions of opportunities, vital support and independence.

Yes there isn’t an infinite amount of money in the world but should the most vulnerable in society be the ones to suffer?

When you tell me ‘we don’t have he money for that’ what you are really saying is my child doesn’t matter. His safety doesn’t matter;his welfare doesn’t matter; his life doesn’t matter. You are saying society doesn’t care.

Everyone has potential. Every life matters. Should there be a cost attached to vital support? What if that was your child put at risk?

What if someone said to you that you didn’t matter, you were not worth investing in, you should just accept what is given wether it meets your needs or not? Would you accept second best because someone said ‘we don’t have money for that’?

There are too many children with needs being put in school transport that is unsuitable, unsafe and transporting them for way over the government guidelines of time just because their parents are told there is no money for any other option.

There are too many children struggling in education, having to be withdrawn because of inadequate provision and placed in mainstream when it isn’t right all because of lack of funds.

There are too many families denied vital respite putting lives at risk all because of lack of money.

There are too many children and young people denied access to support such as speech and language, mental health workers or occupational health all because of cutbacks.

Our children matter. Our young people matter.

You can’t put a cost on the importance of a life.

My child deserves so much more than your glib and thoughtless comment of ‘we don’t have money for that!’

Your child deserves better too.

A letter To The Parents Of A Struggling Child

Dear parent,

I know at times you feel so helpless and alone as you watch your child struggle. When we give birth and hear our babies cry for the first time from that moment on we want to help them and make everything right for them.

We don’t want them to be ill.

We don’t want them to be unable to eat.

We don’t want them battling for breath.

We don’t want them in pain.

We don’t want them to be the last to meet milestones.

We don’t want them emotionally or physically or socially struggling.

There is something about watching your child struggle that tears your heart in two. That feeling of uselessness, helplessness, having no control over things. That feeling that you should be the one to fix it all for them, comfort them, make it all better…but you can’t. That feeling of not being able to meet your child’s needs, whether that’s feeding them, holding them, carrying them or teaching them. That feeling of having to accept help for the sake of your struggling child.

I’ve been there too.

I know that feeling of failure well. That gut wrenching feeling as a parent when a nurse, therapist, teacher or doctor is the one that gets your child’s first eye contact or enables your child to say their first word. I understand that feeling of being robbed of something that should have been your privilege, not theirs. I’ve experienced that feeling of despair, the wanting to give up, the inadequacy that comes with having a child who is struggling.

I’ve cried so many tears and I’m sure you have too.

No-one wants to be the parents of the child who isn’t talking when all their peers are. No-one wants to be the parents of the child who has failed their six week check up, two year check up and even their pre-school check up. It’s a kick in the teeth for all the hard work and investment in your child when all they see is still a struggling child.

I know the fights. The fights to prove you are a good parent and your child’s struggles are not due to neglect. The fight to get your child help. The fight to be listened to. The fight for the right educational environment for your child to thrive. The fight for basic equipment to help. The fight for support. The mental fight to get through each day.

I know the fears: for the future, for their education, because they are so vulnerable.

When you are the parent of a struggling child it means you struggle too.

Too many judge.

Too many are ignorant.

Too many refuse to understand.

Too many ignore.

Having a struggling child is lonely. It’s isolating. It’s heartbreaking.

But I also know you are doing everything you can and more. Your determination, courage and strength shines through you. No-one could love, encourage or support your child more than you do.

You’ve got this.

My child struggles too. Their struggles may not be the same ones your child faces but that doesn’t matter. We are still in this together.

Stay strong my friend. There will be better days ahead.

Your child may be struggling but that’s not your fault. Hold your head high and show the world who you are.

You are not a failure for having a struggling child.

You are not to blame.

You are a wonderful parent.

Never ever forget that,

Yours,

A fellow parent of a struggling child.

My Disabled Child Is Still A Child

Before I had children of my own I genuinely thought parents pretty much stuck together. I mean after all aren’t we all in the same situation struggling with lack of sleep, worrying for our children’s future and tidying up toys every day?

Then I had a disabled child and I discovered that somehow that changes things.

Other parents no longer talk to me about standing on Lego because they assume I won’t relate since my child can’t play with Lego.

Other parents don’t mention all the activities their child does after school and how they feel like a glorified taxi driver taking their kids to dance, swimming and karate. They know my child isn’t able to do these things so they don’t bother to share about them with me.

Other parents don’t message me for advice even if my child is older than theirs because they assume I won’t know anything about normal child development since my child is disabled.

I could go on. I’m sure you get the point though.

There is an assumption by other parents and society in general that my disabled child is somehow not really a child like other people’s. They assume my parenting is nothing like theirs.

So let me tell you something very important: disabled children are still children.

They still have toys.

They still watch TV.

They still try and get away with more time on technology than they should.

They still turn their nose up at sprouts, throw toys in frustration and demand all our time.

They also outgrow clothes and shoes quickly, lose teeth at the same time as other children, go to school and learn, hate homework and catch the cold like other kids.

Yes every single child is unique, every life is different and my child struggles to do many many things other children do naturally (like speaking for example) but that doesn’t mean I don’t want to hear about your parenting issues nor does it mean I won’t relate.

You might be surprised to know we actually have more in common than you realise.

I have a disabled child. That may mean some parts of parenting are a little different to others but at the core my son is just a child like any other and I am a parent like other parents too.

Please treat me like any other parent. Please see my disabled child as a child just like yours.

We are all in this together and we have much more in common than we both realise.

Oh and my son may not play with Lego but I can still appreciate how sore it is to stand on. You have my sympathy there.

My Severely Autistic Son DOES Have A Bright Future

Six and a half years ago when I took my toddler to a clinic and left with a diagnosis of severe non verbal autism , pica and global developmental delay my heart broke. It didn’t end there either. Six months later he was diagnosed with a progressive genetic condition. A year later he added vision impairment to his list. At seven he added an optic glioma, a form of brain tumour and at nine, epilepsy.

As I write this he is ten, with the developmental age of a one year old, the speech of a nine month old baby (he is non verbal), he isn’t yet potty trained and requires round the clock care. He has to be medicated twice daily to keep major seizures at bay. He needs six monthly MRI tests to monitor his brain tumours.

On paper his future doesn’t look good.

I have spent so much time breaking my heart for my son and all he will miss in life. He likely won’t fall in love, get married, have a family, have a job, learn to drive, attend college or university or live independently; all the things parents expect from their children as they grow. He can’t yet write his name, he’s never attended mainstream education and his care needs are so high I have been his full time carer since he was born.

So given all that information how can I possibly say my son has a bright future?

Quite simply this: Quality of life isn’t determined by what other people think.

I thought my child should find a partner, perhaps have a family of his own, get a job, drive, contribute to society in some way and make a difference. I thought he should go to school, perhaps onto college or university then find happiness and fulfilment in a career of his choice.

But who says any of this is a bright future? Who determines these things as quality of life?

In actual fact my son has an amazing future ahead of him, one very different to how I imagined, but even more incredible!

He’s never going to carry the burden of responsibility so he won’t stress about interest rates, taxes, mortgages or company shares.

He’s never going to become embroiled in complex relationships so won’t experience the heartache of divorce or family breakups.

He will remain blissfully sheltered from many of the awful things that life carries with it like murder, abuse, political turmoil, homelessness, drugs or wars.

His simple life will be the envy of many.

His needs will be met, either by carers or myself, for as long as I live. He has a sister who adores him and who I know will do all she can to make sure he is looked after too.

He will spend his future not in the drudgery and stress of daily commutes to work or long shifts but in doing what he loves most. He’ll be taken swimming, the cinema, cafes, shops, garden centres and day trips. It will be like he’s retired without ever having to have done the fifty plus years employment first.

Clothes and food will be provided for him. Other people will arrange whatever finances are required, drive him or support him in transport and make sure he is happy and well.

His future is, in fact, what so many of us would dream of. He will watch what he wants on TV, explore the world via google street map and see family often.

He will, as he already does, be surrounded by love, respect and support.

I’ll take him to as many lifts as he wants because his years of education will be complete.

I am not deluded. I am not just looking at life from rose tinted glasses. I am fully aware that my son will always need a huge level of care and that I may not always be around to give him that. I, more than anyone, understand how vulnerable and naive he is and always will be. I know i will fight budget cuts, endless complex forms to have control of his finances and health needs and that I will likely get little to no respite when he passes from children’s care teams to adult care teams.

This won’t be easy for ME but for HIM the future is bright.

We are so quick as a society to assume that anyone with learning disabilities, severe autism or complex needs is a burden. We see their quality of life as somehow less because it doesn’t follow the tradition path of higher education, work and raising the next generation. We see their inability to pay taxes as somehow awful and view them as beneath others.

My son, and thousands of others, walk a different path in life. They face a future quite different to that which we see as ‘normal’. Yet their future, their existence, their needs, are not in any way less or second class.

My severely autistic son’s future is full of life, love and fulfilment. That to me is the epitome of a bright future and quality of life.

I am looking forward to it and if he understood what the future was I know he would be excited too.

The Loneliness Of A Special Needs Sibling

It’s just after 6:30pm and her brother has just had a seizure in the bath. While her mum pulls him out and dries him her dad rushes upstairs to help.

And she was left alone.

It’s 11am at the retail park and suddenly her brother has disappeared. Her mum shouts his name and runs to the lift knowing her brother loves them, while her dad runs to the door to make sure her brother hasn’t ran into the car park.

And she was left alone again.

It’s 2:30pm on a Tuesday afternoon and she is with mum and her brother at yet another hospital appointment. Her brother’s height is taken, his weight measured and the eye specialist looks into her brother’s eyes while talking to mum in words she can’t understand.

And it feels like she isn’t there at all, even though she is.

Life feels all about her brother. She can only go places if HE is well enough, if HE can cope with it, if there is provision for disabled children. She hears others at school talk about zoos, trampoline parks and ice-skating rinks but she has never experienced those. She could tell them about tonic clonic seizures, communicating with a non verbal brother or what an occupational therapist does. She knows that isn’t what anyone wants to hear about though.

So she just stays quiet.

She does her own thing. She finds her own way of coping. She is the epitome of resilience, the definition of bravery, the personification of inner strength.

But she’s lonely. So very lonely.

She’s typical of so many siblings lost in the shadows while the limelight shines on the sick sibling, the disabled brother, or the struggling sister.

Expected to carry on with homework while her brother screams, to try and watch TV without complaining while her brother has a meltdown, to still sleep while her brother bangs toys throughout the night because he sees no need for sleep.

These are the siblings whose loneliness we don’t like to see. We don’t like to admit that disability affects the siblings as much, if not more, than the child who is diagnosed. It makes us uncomfortable to think we have caused an innocent child to experience mental pain while we care for the physical pain of another child. We hope beyond hope that things will settle and one day we will ‘make it up to them’ for the times we couldn’t make their school play because their brother was sick or in hospital. But that day never seems to come.

So she just carries on.

Until one day she says ‘it feels like I am invisible sometimes.’

Then you realise the utter loneliness, the repeated rejection she had felt and the fear she experiences daily. You vow to change things but nothing, nothing, will take away her loneliness.

I promise you siblings, you are NOT invisible. You are the real hero’s in all this. You are the ones who’s smile keeps everyone going, whose humour brings life and whose strength inspires.

You may feel lonely but you are never alone.

I promise you so many other siblings understand and they have been where you are.

You got the raw deal here and I’m sorry.

This post first appeared here. Do check out my other blogs on Firefly (www.fireflyfriends.com) and my regular updates and thoughts on my Facebook page (faithmummy).