What Being Discharged From Services Feels Like For A Special Needs Parent


I’m standing at a cliff edge crying out for help for my child. My voice echoes back to me in the chill and darkness of the valley ahead. I feel alone, cold, worried. Has anyone been here before? Can anyone help?


A tap on my shoulder from a speech therapist. A slither of hope in an otherwise wilderness. ‘Tell me about your child.’ So I do; readily, enthusiastically, because, after all, it’s my specialist subject. She huma and haws. Will she leave me back at that cliff edge again or bring me into safety. She offered me little really: Some visuals posted out to me to help me with my non verbal child. No working with the child. No courses available at present.


Discharged.


Like a knife wound to an already injured animal. Powerless to fight, alone, frightened. The word echoes on in the valley. Left alone again.


A pull on my clothing. Dare I turn around? Is it possible someone else may be there? Could this be the help I need so urgently, so desperately for my child? ‘Tell me about your child’. With tears running down my face, my heart beating fast, the fear evident with every word I utter: The paediatrician listens, refers on, moves on, one retires and we never see her again. It’s a fight for another appointment. Months past, years past until I realise what had happened:


Discharged.


Like they are washing their hands of my child. Nothing more they can do apparently. Hope disappeared. Back at the cliff point once again.


A whisper of my name. Hospital clinics this time: Neurology, medical paediatricians, ENT, eye clinics…in the end we’re just a number. In, out, maybe back again another time, maybe not. They might do further tests or they may send us to ‘no-man’s land’ also known in medical terms as ‘watch and wait.’ It’s another name for ‘do nothing and hope for the best.’ Some doctors we see more than once but not many. So much repeating our story, so many different faces. One day they all seem to come to an end and you age out, or they realise they have seen you too often, they start to recognise your face so it’s that time:


Discharged.


Like taking the trash out for the binmen because you have no more use for it. Like taking your old clothes to charity hoping someone else will one day see them and think they are of value. Either way you are no longer wanted. Off you go, but don’t hurry back.


Back at the cliff edge calling out for help again. Your own voice echoes back like it’s haunting you. Your child has aged, you are still pushing them in a wheelchair, progress was slow, your disabled child morphed slowly through the system to a disabled adult. Every time you passed go you collected another diagnosis.


Did anyone really help? Oh people referred on, people send out forms and ticked boxes but it never took long to be alone again. Services started, services ended. Funding run out, appointment drew further apart or never came at all and some professionals vanished like magic.


Reasons given range from lack of progress, no longer meeting criteria, too complex, not best use of time, or simply lack of resources. Rarely is it actually due to no loner needing the service.


Discharged.


Like a slap on the face, a stab to the heart, a sinking alone feeling that your child really doesn’t matter.


I stand at the cliff edge crying out for help for my child. My voice echoes back to me in the stillness and darkness. Oh there once were a few tugs, a few dull whispers, a few taps on my shoulders…but they are all long gone now.


I scream out: ‘Where is everyone? Please help me! Why did we get discharged?’


The echo comes back to me in the valley..’discharged


So we go it alone. Again.

Having A Child Who Is Forever Vulnerable

Vulnerable: to be weak, without protection, easily hurt physically or emotionally, easily influenced, prone to attack, naive, easily taken advantage of.

 

I used to think of vulnerable in terms of a small child unable to defend themselves, an elderly person living alone unable to fight off an intruder or a homeless young person who could easily be taken advantage of by others.

That was until I had a disabled child of my own.

My son was born vulnerable. Smaller than average due to being a twin, a little premature and struggling to regulate his own temperature.

He remained vulnerable as a toddler still crawling when all the other children were walking and in danger of being tripped over or having his hands trampled on.

He started nursery vulnerable, relying at three to be carried still, needing adults to guide him, feed him, change him and dress him.

He started school still vulnerable unable to speak, not understanding the world yet and still needing adults to do everything for him.

This year he finishes primary school and he’s STILL vulnerable. Still non verbal, now with significant learning disabilities, diagnosed autistic, complex medical needs, visually impaired, epileptic and still requiring adults to dress him, brush his hair, wash him and see to his bodily needs among many other things.

We can all have periods in our lives when we are vulnerable, perhaps driving in an unfamiliar town, starting a new job, living alone, walking in the dark or feeling unwell. Having periods of vulnerability keeps us humble and human but it’s uncomfortable, frightening and damaging to our self esteem. Most people go out of their way to avoid being vulnerable because the feeling of helplessness is disempowering.

Now imagine how it feels to have a child who will be forever vulnerable.

He will forever be prone to danger.

Forever be weak.

Forever without protection.

Forever easily hurt physically and emotionally.

Forever easily influenced.

Forever prone to attack.

Forever naive.

Forever easily taken advantage of.

That’s terrifying.

When people see special needs parents like myself and say things like ‘she’s very over protective’ or ‘still holding his hand at 11? I’d never do that!’ or ‘you need to give him more independence’ I wonder if they understand vulnerability? Can they see the fear in my eyes, hear the fast beating of my heart and notice the never ending worries swirling around in my head?

I can’t take my eye off the ball.

I can’t stop being concerned.

I can’t ‘back off’

I can’t die.

My child can’t go out to play, be alone, be sent to the shops for me, go out on a bike, see his friends (he hasn’t got any anyway), or even walk to school. He requires adult supervision all the time and always will.

He can’t speak, he can’t read, he can’t write, he can’t ask for help and he can’t get himself food. He’ll never live independently or work or marry because he will be forever vulnerable.

He was born vulnerable, he has grown up vulnerable and he will die vulnerable. My job as his parent is to protect, advocate, nurture, guide, teach and put in place everything needed to ensure he remains safe throughout his life.

The world is a scary place when you are alone, in the dark, unwell, somewhere new and always reliant on others for everything. Now imagine you had a child who was forever like that.

That’s what it’s like having a child who is forever vulnerable.

Autism Isn’t A Lifestyle Choice

Autism diagnosis continues to increase year on year. With that comes more awareness and hopefully more acceptance. More and more adults are now seeking diagnosis and some even ‘self identify’ as autistic. Not a day goes by when there isn’t a press article, a blog, a meme or a TV programme featuring or talking about autism. So has autism become a trend, a cool thing to be, even a lifestyle choice, and is this right?

Autism isn’t something that should ever be taken lightly. For many, my son and daughter included, it’s a significant disability requiring life long support. They made no choice is being autistic and they can’t choose to stop having it either. It’s part of them p, and always will be.

Recently I was having a discussion with someone and I was asked if I said my children were autistic before they had their official diagnosis. Of course they WERE autistic before they had their official diagnosis, they were born autistic after all, but prior to official diagnosis I said that my children were ‘under investigation for autism’ or ‘waiting to be tested for autism’ and later on, having sought advice from their paediatrician, I was told they had a ‘working diagnosis of autism’ meaning everyone was treating them as if they had an official diagnosis as we waited to reach the top of the waiting list so they could access services immediately based on need. I never once said they ‘were autistic’ as a formal diagnosis until it was confirmed.

Things were similar with my husband. He suspected he was autistic, as did every professional working with us, but as nothing was confirmed we didn’t say to anyone. That wasn’t because he wasn’t autistic it was because, until confirmed, it was based on suspicion, our own research and the thoughts of others who were unqualified to formally diagnose. Until formal diagnosis my husband didn’t tell anyone he was autistic or even suspected he was autistic, other than me. After diagnosis he was happy to share the news both privately and publicly.

Yet everyday on social media, in comments on this blog and in groups, I see self diagnosed adults with no formal diagnosis of autism confessing to know more about autism and my children because they ‘are autistic’ or ‘choose to identify as autistic’. It’s become ‘normal’ to be allowed to say you are autistic even without any formal diagnosis.

Autism isn’t like being vegetarian or vegan, it’s not a religion you choose or a trendy way of living or identifying. You can’t be autistic one day but not the next when it suits you. You can’t be at little bit autistic’ either and you absolutely can’t pick and choose autistic traits like it’s a pick and mix in a sweet shop!

Doing a Facebook quiz and getting a certain score does not mean you are autistic. It means it might be worth investigating further; nothing more.

Now let me clarify that I am well aware that the more information about autism there is the more likely many adults will discover they are actually on the spectrum. This is exactly what happened to my husband but the words of the doctor we went to at the time have so much wisdom in them:

Autism is something for the experts to decide, not individuals, because like any condition it needs thoroughly tested. For everyone’s sake it’s better to know for sure than assuming anything.’

Autism for all three of my family is a disability. In no other disability would it be acceptable to just say you have a condition without actually having proof. You may be diabetic or have Scoliosis or have arthritis but until a doctor or expert confirms this it is dangerous to take medication for those conditions and say you have them if you don’t. There is a valid reason why many services need an official diagnosis before you can access them.

Now I know formal diagnosis for autism isn’t perfect. I know there are a few people misdiagnosed by the experts and I appreciate waiting lists are long. I also appreciate that access to formal diagnosis isn’t always even available.

However, if you have truly and thoroughly researched autism and believe you are autistic then by all means share your thoughts privately with your family or close friends. By all means look for support and answers. Just don’t hail yourself as an expert on a condition that you haven’t formally been diagnosed with yet.

My issue isn’t with genuine people who are autistic but can’t access formal diagnosis for financial or other reasons. My issue isn’t with children being let down by the system and left to struggle. I do understand the heartbreak of knowing your child or loved one needs support but being unable to access that. These all need addressed.

My issue is people that see autism as a ‘lifestyle choice’, a way of identifying because it fits with their own thoughts even if qualified professionals don’t agree and then using their self appointed status to publicly assert themselves as an expert on those formally diagnosed like my children.

My issue is people who say they are autistic yet in the next breathe say ‘but I probably wouldn’t get diagnosed’.

You can’t just decide yourself you are autistic. Your own opinion of yourself isn’t of more importance than trained professionals. It takes more than one person to agree on a diagnosis of autism for a reason.

Autism isn’t a lifestyle choice, it’s a complex lifelong condition that affects people forever.

Don’t make my children’s disability into a trendy way of life. Don’t say you have a disability publicly until you know for sure. I want to understand more about my children’s condition but I don’t need self confessed ‘know it all’s’ who aren’t even diagnosed themselves telling me how to support my children.

Can We Take Autism Acceptance Too Far?

My husband is autistic. Both my children are autistic. I am a huge advocate of autism awareness and acceptance. However I am also a realist and deeply honest and something that has been worrying me more and more is the fact that we seem to be moving perhaps too far in our pursuit of autism acceptance and I am now wondering if the scales are now tipping too far the other way?

What do I mean?

Well for many years the voices of autistic adults were ignored and suppressed. In more recent years, thankfully, this has been changing and some of the most successful advocates for autism are now autistic adult self advocates. This IS a good thing and I don’t want us to stop hearing from autistic adults. I have learnt so much from them and I would love my own daughter to emulate some of them as she matures and grows.

However, there is a balance and with the growth of self advocates there has been a real suppressing and abuse of parents of autistic children (and adults) who have been threatened and bullied because their thoughts seem to clash with the autistic self advocates.

You see autism is a very different experience for different people. For some adults it is just seen as a different way of thinking or a unique way of looking at the world and for them that is absolutely fine and right. Then there are parents, like myself, of children who may never talk themselves and who have extremely high care needs and require round the clock care, diagnosed with the same condition, yet living very different lives. For those families, and I say families because it affects everyone not just the autistic child or adult in these cases, autism is a huge disability and they have a right to voice that too.

Here is a good example of how things have changed:

Six years ago when my son was just four, screaming all day, smearing, non verbal, still in nappies and attacking me I would read posts on support groups which read ‘Help My child is always in meltdown, attacking me and stimming. I’m exhausted and struggling.’ I could identify and I would say so. So many others said similar and the person posting was validated in their struggles while a few would give some ideas of things that had worked for them. Everyone wanted to help both the child and the parent but at no point was the parent made to feel awful for struggling.

Fast forward six years later and the same post in the same group gets very different comments because things have changed. We have been told by autistic adults how much they need to stim and how we need to accept them for exactly who they are and embrace their differences. While that is absolutely right it has also lead to parent bashing and now the same parent gets comments such as ‘how dare you make this about YOU!’ They are called a martyr mum for struggling and some even go as far as to threaten to report them for abuse claiming the child is struggling because they are such an abusive parent. What then happens is the parent feels worse than ever, even less equipped to support their child and even more isolated than before.

Then there is the cases of genuinely concerned parents desperate to help their struggling children asking about therapies in order to help their child make friends, communicate better or cope better in school and they are jumped on by autistic adults who were damaged by certain therapies as a child and who say the parent isn’t accepting or loving their child as they are because they want to change them.

We are fast reaching a point where parents are no longer allowed to be human, or ask for support or want to help their autistic child. We are no longer allowed to mention anything that even hints that our child struggles or that they have any difficulties or we are accused of ableism.

Apparently I am not politically correct and ableist by saying my son has severe autism, he is non verbal at ten, not toilet trained and has the academic ability of a baby. However that IS exactly what he has. He has low functioning autism and his reports even state ‘severe mental impairment’. Stating that he won’t get married, have children, live independently and need 24 hour support all his life is suddenly taboo and offensive because his autism is just a different way of looking at the world and nothing more. According to some self advocates I should have my son removed from my care because I dare to say his autism is a disability. Apparently none of his difficulties are actually his autism and all other conditions. They say my attitude is what disables him and not his autism.

We need the voices of autistic adults, as parents we need to know what to avoid and how best to support our children BUT we need to also be allowed to struggle too. The seesaw of acceptance has to swing both ways.

For a long time parent voices out weighted those of autistic self advocates and that was wrong. Now I feel we are in danger of swinging the opposite way and parents who are sleep deprived, heartbroken at watching their child self harming or struggling with suicidal thoughts, or just exhausted by the same ten seconds of a video on replay for 8 hours, are vilified for daring to say autism can be difficult.

Can we take autism acceptance too far?

If we continue to see it just as a different way of thinking or seeing the world we are in danger of losing educational support for so many struggling children and throwing them into mainstream because ‘autism is not a disability’.

We are in danger of losing vital financial help for families because they are too afraid or programmed not to admit their child’s struggles.

We isolate struggling parents leading to an even bigger chance of vulnerable children being abused and parental suicide.

We cut back vital adult services for those who need it because we see anyone with autism as just different and not therefore in need of support.

We need a balance and an acknowledgement that autism is experienced differently by different people and that’s ok. Some need very little support while others need much more and that includes parents as well as autistic children and adults.

Until we accept that the balance of autism acceptance will never be right.

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 Ten Year Old Son Doesn’t Know What Christmas Even Is

As his twin sister races downstairs eager to open another door on her advent calendar, excitedly counting down the days to Christmas Day, you watch TV flapping like any other day.

As your twin sister practices Christmas songs after school in preparations for her Christmas show in two weeks time you watch the same ten seconds of lifts on you tube and rock in your seat as you always do.

Christmas means nothing to you.

No letters to Santa, and definitely no visits to any grottos.

No decorating a tree with the family or even any concept of what tinsel is.

No singing Christmas carols or dancing to seasonal pop songs as they play in the shops.

It all means nothing to you.

Your world is oblivious to the hype, the busyness, the traditions that consume society at this time of year.

You would eat turkey and all the trimmings if it’s put in front of you, but you would equally eat any other meal presented too. It’s just food to you, nothing more, nothing less.

My autistic ten year old has no understanding or interest in Christmas. He is still consumed by his own world, dependent entirely on routine, not communicating verbally at all.

Honestly, some days that breaks my heart. I know we should not compare children as each child is unique and individual but at Christmas you want your child to be excited, happy, expectant. Instead my son is uninterested, unconcerned and unaware.

Christmas isn’t his ‘thing’. Neither is Easter, his birthday, the tooth fairy or any other number of occasions you can think of. None of it enters his world.

He won’t write any Christmas cards (he can’t write any letters let alone his name) and he likely won’t receive any either, family events and get togethers are too much for him so I stay home with him. The only Christmas event he will come to is the church service but even then he gets very upset because it’s different to how he perceives church to be. He doesn’t know Christmas carols and he wants the usual songs he is used to back.

He doesn’t like the changes.

He doesn’t like new stuff.

He doesn’t like Christmas.

I can’t change that. It’s who he is and how he is. I could cry my eyes out every day for years but it won’t change things. I’ve had a decade of crying and wishing things were different. I have accepted that Christmas just isn’t something my ten year old understands nor does he wish to partake in it.

Even if I bought him presents he would never open them. He’s never opened a birthday or Christmas present in his life.

I could pretend it’s all ok. I could move a tree near where he is and take a picture and pretend he’s part of it all. I could put seasonal clothes on him and imagine he chose them. I could buy and wrap stuff for him and dream that somehow the magic of Christmas would change him overnight. All that would do is break my heart more.

I don’t need that. He doesn’t need that.

So while I decorate my daughters bedroom with her and revel in her excitement, while I buy and wrap gifts for her eagerly looking forward to seeing her face on Christmas morning, while we sing and laugh together as we practice Christmas songs the other side to my life is that I am playing down everything as much as possible to keep my son at ease.

I walk a fine line of trying to celebrate and embrace Christmas with one twin whilst ignoring it’s very existence with the other.

My son has severe learning difficulties, severe autism and epilepsy. He can’t speak. He can’t care for himself.

He is full of life, full of fun and the love of my life.

But at ten years old he still doesn’t know what Christmas even is…and he most likely never will.

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.

A Nine Year Old’s Letter To Her Disabled Brother

Dear Isaac,

I know you can’t ever read this but maybe one day I will read it to you. Maybe one day you will understand.

Tonight when you moaned and screamed when I was trying to watch a video you made me grumpy. I still love you even when I got mad at you and I am secretly glad you are well enough to scream and moan now.

The last two days I have watched you have lots of seizures and I have been so worried about you. I worry you might go to hospital or you might faint. When you have lots of seizures I don’t like going to school or leaving you. I call your name to try and wake you up. I prefer you wide awake and acting normal. I miss your screaming and being noisy when you have seizures. It’s like you are there but not there. You scare me but I still love you. I pray God will stop your seizures soon because I want you better.

One time I counted you had at least 7 naps in one day. I played card games with mum and dad and still you didn’t wake up. That made me sad. I missed you that day so much.

When you have a bath I really want to play with you and have fun but just as I start to have fun with you you push me away and makes me cry. Why do you do that? I wish you could talk to me and tell me. I would understand. I love you.

I love going on trains with you and going to the park. You are always happy in those places. I know you love me pushing the roundabout for you. I like seeing you on the swing too because I got you that swing for you, though I know you will never understand that. I did it because I don’t think life is fair to you and its better when you are happy. When you are happy I am happy too.

You keep me awake with his noises at night and wake me up early. I forgive you. Always.

You kill my fish by feeding them. Feeding fish is good Isaac but maybe not with talcum powder, toothpaste, trains and bubble bath! You do lots of naughty things like use felt pens on the armchairs, tipping bins, pulling pictures off walls, wandering away, and you always have to be first in the house. You make mummy and daddy sad but I want to tell you it’s ok. We all forgive you. We all love you. Sometimes we might be mad but we always forgive. We know you don’t mean it, though I have some baby fish now so it would be good if you just let ME feed them. Would that be ok?

Sometimes you get more attention. Mum is always bathing you because you scream and throw things if she doesn’t. You always want to go out even if I don’t want to and it sometimes feels like you always get your own way. It’s not really fair but I still love you.

You can scream very loudly. You hit me all the time. Please can you be gentle? Until them I will be patient while you learn.

There are things you can’t do. You can’t talk or write or read. I know you can’t read this but maybe you will understand if I read it to you. Maybe.

You can play just in a bit of an awkward way like tipping things on the floor or eating teddies. You only sometimes cuddle me but that’s ok.

You can be funny though. You try to push the roundabout AND get in it at the same time! You throw your fork away when you have finished eating because you forget we can wash them. You put your fork in-between your toes and then pick up food with your fingers. That’s clever and funny. You put your iPad behind your bed and think it will magically charge there. You chew charging leads and then wonder why they don’t work anymore. You make me smile and I really love you.

You never walk to school because it’s 14 miles away. You get star of the week more than me because there are less children in your class. That’s unfair! You get it for silly things too. But you never have show and tell. That would be funny because you can’t tell anything anyway. That must be hard because I know you want to say so much.

You are always on google maps. I think that’s amazing and clever. Some people don’t think you are smart but you are.

You never get to be secret student like me. My school is doing secret student now and I was secret student today in my class. When I was chosen I thought of you. Would you know what that is? The more I get bigger the more I wonder about things that you might never do or understand. You know what though, I think they chose me deliberately because I was having a bad day. I went to school crying today because you had some of those seizure things again and I want to make sure you are ok. I can’t be a good sister if I am at school can I? I’m sorry I left you.

My friends don’t understand what it’s like having a brother like you.

Sometimes I don’t want them to even know about you. I worry they would say nasty things about you because you are different or say nasty things about me. My best friend knows about you though. She worries that you may hit me but I don’t like her questioning things about you. It’s hard to explain about you because you are just, well, you are just very special and sometimes precious things are best kept secret. Is that ok?

Sometimes I love you Isaac. Sometimes I hate you. It’s hard having a brother like you but it’s also easy having a brother like you. It’s hard to live with you but its easy to love you. Really easy.

You are my friend sometimes and a bully other times. I wish we could be friends more. I am going to try and help you do that.

You teach me how to be patient and that it’s ok to be different.

I want to be there for you when you are bigger. I want mummy to teach me to care for you. Please let me do that will you?

Please try and keep learning. I believe in you. I will teach you. I can do dividing with remainders now and everything! But what I am most happy about doing is making you smile.

You are the best brother in the world even when you make me cry. I know I make you cry too.

You help me. I help you. How does that sound?

If you can’t say yes just sign it please.

It’s ok because I understand.

With love,

your sister Naomi

Why I Struggle When My Special Needs Child Gets ‘Star of the Week’

So my 9 year old son came home from school on Friday with a certificate and photograph in his bag. There was no eagerness to show me and no message in his school diary; it was just there. Of course I am proud of him and told him so and absolutely it will be displayed on his bedroom wall to honour his achievements like his sisters are in her room. That is never in doubt. However, I have to be honest and say I really struggle when my son gets ‘star of the week’ and here is why:

1. It reminds me just how far behind he is academically.

It’s a sobering thought that my son has been at school five and a half years and is still working at pre-school levels in many subjects. The very fact he still has no idea that star of the week is any sort of aspirational incentive to even aim for says it all. He isn’t being modest or shy in not showing me his certificate; he honestly still doesn’t get the whole social aspect of celebrating achievement in any way. His twin sister commented on his award saying ‘well done Isaac but…’ and she went on to ask why he is still so far behind her. That’s hard. You see I live with my child daily and I know he struggles but seeing it on paper seems to somehow make it raw. It hurts. I am proud of my son but sad that he is behind so much. I don’t think anyone wants their child to be 7 or so years behind their peers in any way.

2. It makes me scared for the future.

I try not to think of the future. I live everyday and enjoy the moment but wisdom would tell me that I do need to plan for the future too. I shared my sons achievement on social media and today someone asked me in person what happens to children like my son when they finish education. The reality is my son will likely not be suitable for college and academically will never reach the level required for university. Employment is pretty unlikely too so our current options include him living at home and attending day care services. That’s not what I planned for my child when I conceived him and carried him for nine months, and although I do need to be mentally prepared for this seeing his star of the week award just feels like his future is all planned out and that is scary. His options are limited and seeing his academic ability on a laminated sheet makes that a stark reality. I won’t lie, that is hard to accept.

3. It makes me feel he is being defined by his ability to learn.

When I think of my child I think of am energetic, fun loving, teddy chewing, mischievous little brown eyed boy who does the best squeezy hugs and who loves his food. I think of the child who has incredible gifts in communication despite having no spoken language. I get so much joy from singing along to the songs he plays on his iPad and going to lifts with him. I see a child who gets so excited every time Bing Bunny comes on the TV that he bounces in the armchair he is sitting in. I see a child who could go hundreds of miles to places on google street map even though he has significant visual impairment. I don’t see his lack of ability to read or write or speak as an issue and none of those difficulties define him. So when I see his star of the week award I hope that this is not just how society sees my child either.

My son will always struggle with some things. Professionals and medical specialists have told me it is unlikely my son will ever speak to me. Education have told me he won’t ever attend a mainstream school and college or further education is unlikely. It’s a very sobering thought but with that comes my absolute determination that my son should never ever be defined by his struggles.

So I will stick his award on his bedroom wall and smile. It’s great he has been recognised. It’s great he is making progress but I never forget that for everyone of us life is much more than our ability to learn or how far we go in education.

I struggle when my son gets star of the week because his ability to achieve should never be limited to traditional education. I am raising a remarkable, brave and wonderful child who is breaking the mould in life. He is a star in so many more ways than just trying to write the digit 2. One of the many reasons I write about him is to help others see beyond his academically ability (or lack of) so I will stick that award up and get back to celebrating my son in every other way I do daily.

Don’t ever let educational achievement define anyone. We are much more than our ability to learn.