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.

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Adding Epilepsy and how it has changed things for my beautifully complex child

It’s quite a bizarre feeling when a medical professional finally tells you what your gut already knows. I mean if you already know it why does it still send your stomach into knots, make your head feel like it will explode and fill your eyes with tears? Maybe knowing something inwardly but hearing it outwardly isnt quite the same.

Whatever it is, the day I finally heard the medics say my son has epilepsy was just like that.

It shouldn’t have been a shock, but hearing it still made me numb.

I should have been prepared, but hearing the words still felt unreal.

I had already googled it so many times so why did I suddenly google all over again when I heard it ‘officially’, desperately believing that the information I read would somehow be different?

Knowing something inwardly doesn’t ever prepare you for hearing someone else say it after all.

So my son has epilepsy.

It’s not like this is his first ever diagnosis. He collects diagnosis like some people collect coins or stamps. He’s a beautifully complex child who already has a list of conditions that would scare even the monsters under your bed! Severe autism, severe learning difficulties, neurofibromatosis type 1, microphthalmia, Persistent Hyperplastic Primary Vitreous, optic glioma, global developmental delay and now epilepsy. It’s a mouthful. We tend to shorten it to ‘isaac’ and we encourage everyone else to do the same.

So here he is.

Isaac. My beautifully complex son who now has epilepsy.

Despite so much against him Isaac had been doing well, though I guess that always depends on what you mean by ‘well’. He was attending school, he was eating and drinking and, now and again, sleeping. He was happy, energetic and full of life…until March this year.

I didn’t see it coming. Yes he has had minor seizures, or episodes before. He has been having absence seizures for years and had EEG’s several times. He has, like all children, caught various bugs and minor illnesses but despite the fact he has no speech at all I could tell right away when he woke on the 4th March that something was seriously wrong. In fact I had to wake him that morning which I can’t remember ever having to do. He spend the day like this, only walking to have what I knew was some sort of seizure then sleeping again.

I sought medical advice. I was told it ‘probably won’t happen again’, except it did. Again and again in fact. Each time lasting longer, adding more adjectives to describe what was happening and scaring us all more.

Until finally in July this happened.

One minute Isaac was sitting eating breakfast, the next he collapsed unconscious onto the floor, his whole body tense and writhing and his arms and legs shaking uncontrollably. A three and a half minute tonic clonic seizure. A four hour sleep followed by a second three minute loss of consciousness, rigid body and shaking.

And so we added epilepsy to his complex needs. We added medication that week too.

Medication has been awful. If we thought the epilepsy was bad the medication was even worse! My son became a shell of his former self, lost deep in a world of lethargy, nausea, confusion and distress.

I was told ‘it will pass’. It didn’t.

So we stopped that medicine and started another. This time he is more alert but the lethargy, agitation and mouth ulcers have caused him so much distress. It’s utterly heartbreaking.

He’s not at school much.

He’s not doing much.

He’s not eating much.

He’s not really interested in much.

Life is one huge effort for him right now.

Adding epilepsy to my beautifully complex child has not been easy; thats an understatement.

And the hardest part of all of this is he can’t understand what’s happening at all and I can’t explain.

I have never felt so helpless as I do right now.

Blessed with a different child (A caravan holiday in peak season with a disabled 9 year old)

Back home we live in our own world: You go to school in a town far away and I take you to quiet places where few people go, like the park early in the morning or swimming much later after dinner.

Here we can’t do that.

Here it is obvious that I am blessed with a different child.

Caravan parks don’t isolate the disabled children like education does. Caravan parks don’t give you preferential treatment or appointments like the health service does. Caravan park restaurants won’t let you order mashed potato for breakfast like I make you at home. Here you are the same, but different. A bit like the caravans which on the surface all seem similar yet every single one is different.

When we arrive and unpack those around see I am blessed with a different child even before I park the car. There you sit in the back flapping with excitement and chewing on the nose of your cuddly toy. It’s not something 9 year olds do really and you look…odd.

I forget that others see you and stare. It makes me uncomfortable and reminds me why I don’t take you out as often as I should.

Is taking a disabled child to a busy caravan park in the summer holidays the right thing to do?

I think it is.

I take you to the on-site pool. Other 9 year olds are swimming unaided, playing with friends, drying and dressing themselves and doing hand stands in the water. You are lead by the hand by your mum, still using swimming nappies and a rubber ring and you giggle just sitting at the side dipping your feet in the shallow toddler splash pool. You are every bit as happy as all the other children, just in a different way.

I watch you and smile. Being blessed with a different child has taught me to enjoy your happiness every single day. As I look about I notice a life guard watching and smiling. Your different-ness has made them smile too.

I take you to the busy park. Other parents sit nearby chatting and drinking. I am lifting your legs, guiding you to the steps each time, and encouraging you down the smallest of slides so that children 7 years younger than you can take their turn. You make happy baby noises and wave your hands with excitement. Some parents move their children away, some children leave of their own decision but some carry on regardless. I am not embarrassed by my child but I am embarrassed at how others respond to him.

What’s so bad about seeing someone blessed with a different child?

Being in a busy caravan park with a child who is noticeably different to his peers has made me realise something:

My child is not the issue, the issue is how others respond.

I have not helped my son or my community by going to places others don’t. So from now on I promise to change that.

I am blessed with a different child and I won’t hide that anymore. If he wants to swim at peak times that’s where I will take him. If the park is busy what have I got to be afraid of?

I’m done with the isolation. If I can cope with a busy caravan park in summer season with a nine year old who can’t dress himself, can’t speak, can’t jump and still eats with his fingers then I can do the same back home. If he has a seizure in public so what? If he has a meltdown why should I apologise? He is a child just like any other child. He is beautiful, funny, full of mischief and entitled to play just like any other child.

I thought I was making things easier for my son by protecting him from comments and stares but in reality I have made both more likely because children like my son need to be seen more to be accepted more.

I am blessed with a different child and it’s about time the world saw a lot more of him!

I’m so glad I took him to a busy caravan park in the height of summer season. It gave me confidence and delight to be the one blessed with the different child.

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

I Don’t Want To Be An Autism Parent Anymore

*Preface: have you ever felt overwhelmed with life? I have. Of course I love my son with all my heart, I should never need to even justify that, but living with a child with severe autism is hard. I do not need threats made to my life or my child’s because I find some days hard. Comments like that will not be approved.

And for the record I don’t always feel like this but I am human and some days this is exactly how it is. *
The day started far too early. There was no sweet cuddles in bed or a little voice asking for a drink; no I was woken as usual by screaming. I have had day after day, month after month, year after year of being woken by screaming and I don’t want that anymore.

I don’t want to wake up to a smell that would make you want to vomit and bedding that is fit for the bin more than the washing machine, because yet again it is covered in something that ought not to be seen by anyone else. I am so tired of that now.

I don’t want to sit on my couch in the middle of the night looking at my child and wondering what I did to have a child who sees no point in sleeping, who at 8 still can’t say ‘mama’ and who still thinks the world revolves around his needs only.

I love him more than words could ever convey but I don’t want to be an autism mum anymore. 

I want to be a mum who has fun with her child rather than doing therapy with them.

I want to walk my son to school and talk to his friends instead of sending him in a taxi to a place where I am a stranger to them.

I want to be able to talk to my child about the fact it is his birthday soon and discuss what he would like to do to mark that day.

I want to be someone who takes my child to bowling, teaches them to ride a bike or even goes to the movies with them. Instead the only place I ever take him to is hospitals or respite.

I am tired of missing out on everything. I am tired of never having party invites, knowing nothing about his day at school, having to still dress him, having to take adult nappies and wipes with me wherever I go.

I don’t want to be an autism parent anymore.

I am tired of holding my child as he screams in public again.

I am tired of the never ending judgement, the stares and the horrid comments.

I am am tired of carrying around my broken heart as a result of the interventions and therapies having achieved nothing.

I simply can not bear the thought of my child as an adult knowing what society is like.

I am tired of meetings.

I am tired of phone calls from his school.

I am tired of fighting for everything but then being accused as having an attitude or people thinking I act like I am entitled. 

I don’t want my child to have autism anymore. This is not a ‘different way of seeing the world’ that he has, or ‘a wonderful gift’. This is a child about to be 9 years old who can not say ‘mum’ or use a bathroom himself. This is a child almost my height who still can’t put his own clothes on, brush his own teeth or dry himself after a bath. This is a child who can never ever be left alone, who has to have everything the same all the time, who self harms and wanders. This is a child still with the mind of a toddler who will require others to look after him his entire life.

Who would want that for their child?

Who would want that as a parent?

Today I don’t want to be an autism parent any more.

The problem is I have no choice.

So I strip that bed, bath that child, cook him that breakfast as I always do and let him sit on my knee while he rewinds the same ten seconds of video on you tube he did yesterday and the day before that and the day before that.

Nothing changes much in my house, except my feelings. 

Today I am tired. I don’t want to be an autism parent today the same way any other parent may feel about not wanting to be the mum of a toddler who tantrums daily or a baby who has reflux or the partner to someone with Alzheimer’s. We all have days when we are just down about the life we have.

Yet we carry on. We dust ourselves down, search for some positives or listen to some music.

Tomorrow is a new day. It will probably start off with screaming again too., but maybe tomorrow I will be stronger, more hopeful, more upbeat.

Maybe tomorrow I will want to be the autism parent I need to be. 

Maybe tomorrow. 

Ten Seconds That Prove You Should Never Underestimate A Non-Verbal Autistic Child. 


People don’t expect much of my son. 

Speech and language therapists have all but given up on him, encouraging me to just accept he is non-verbal with limited understanding.

School take him on ‘environmental excursions’ rather than reading and writing because…well he can’t hold a pencil despite having been in school for four and a half years so he is never going to read and write is he?

The learning difficulties mental health team wrote to us explaining his challenging behaviour and long spells of screaming are just part of his complex diagnosis and are unlikely to change.

The public looks down on him in distaste.

Children his own age mock him in parks and soft plays when they see he can’t talk and is still wearing nappies.

Even as his mum I sometimes find myself wondering what the future holds.

It is easy to understand why. My son has a long list of diagnosis all of which are life-long conditions. He development is years and years behind what is ought to be and he requires support for all his personal care. He is a non-verbal severely autistic 8 year old who is still very much living in his own world. 

Well that is what I thought too. That is until I happened to turn my iPad video recorder on this evening while he was playing with his iPad. What I captured changed everything.

He had been handing me his iPad on and off for the last half hour. He was pressing the ‘google’ app wanting me to type things in to let him scroll though images. It was exhausting trying to guess what he wanted to look at with no eye contact, no words to tell you and no clues. In the end, frustrated myself, I handed him the tablet back and said ‘Isaac google something?’ I never for a minute even thought he would understand let alone google something so incredible it had me in tears:

He clicked on the search button and within seconds he pressed the ‘i’, quickly followed by ‘s’, then without hesitation he pressed the ‘a’ right beside it twice, before pausing for a few seconds then finishing his search with a ‘c’. In total it took less than 10 seconds for him to prove you should never underestimate anyone!

He just typed out his own name and I had no idea he even knew it let alone how to spell it!

The speech therapists may be right about him not speaking but he clearly understands far more than they realised.

School thought he would never be able to read and write…well he may not be able to hold a pencil cold but he just wrote his name using a keyboard on an iPad so who know what else he may be able to type?

The learning difficulties health team may be right about his behaviour being part of his comprehensive and complex diagnosis but what if so much of it is frustration at understanding but unable to communicate back?

Maybe this ten second video may help the public see that you can not judge anyone by lack of speech or lack of eye contact or lack of social skills. 

It only took my son ten seconds but in that ten seconds he has proved to so many that we must never, ever underestimate anyone, especially those with non verbal severe autism.

Does my son still have difficulties? Absolutely. Should I ‘not expect too much of him’? Never!

Behind the flapping, you tube on repeat, screaming exterior is a brain hard at work piecing things together in his own way in his own time. 
People don’t expect much of my son: I do. He just showed me why.

How My Severely Autistic Son Used YouTube To Speak To Me


Isaac loves his iPad. It is with him from the moment he wakes until the second he goes to sleep. He has a few games he likes and he really enjoys looking through the photos but his all time love is YouTube.

He is pretty typical of many 8 year old boys in that sense. However there is something very different about Isaac: he has no spoken language at all. Isaac has severe autism as well as other complex medical issues and he has poor eye sight. He can not read or write and certainly can not type into a you tube search bar. He fumbles his way through you tube by clicking on random videos and spends most of his day flapping in delight at lift doors opening and closing over and over again.

When Isaac does listen to songs they tend to be very random or theme tunes of favourite programmes aimed at very young children like ”Peppa Pig’ or ‘Wooly and Tig’. He rarely allows anyone else to touch his iPad so he has to go on ‘rabbit trails’ through lift videos or episodes of Wooly and Tig to find anything different. Due to the nature of the video playing app he tends to be faced with a fairly limited repertoire but this has suited him immensely due to his need and love for repetition.

I am not afraid to admit I often struggle to parent my son. He gets frustrated (I absolutely understand that) and that can lead to hours of screaming or throwing himself down the stairs or hitting and pinching people. He has severe phobias of things I can not control like open doors or other children (including his sister) eating and drinking. His life has to be the same all the time which makes living with him quite restrictive. He is not toilet trained nor can he care for any of his own needs. Some days I get very low and I question ‘why us?’ My faith has been taken to levels of testing I never knew existed before.


Then one night last week I stopped what I was doing and just sat beside my son. I longed to hold him but I knew he would attack me. My love for him was overwhelming yet I was unsure if he even knew who I was. I sat beside him on his bed and I could feel the tears building at the back of my eyes. I have not been able to take him to church for weeks now because of his outbursts and his inability to cope with the slightest change. Had God forgotten about my child? Did my son have any idea of the world around him or how much he was loved? I was weeping for my child. My heart was broken both for myself and my son.
In that moment I heard words that seemed to come from God himself. A male voice I had never heard before. The words caught my heart before my brain even fully processed them..

 
“Don’t weep for me…”

What? My son was looking right at me smiling. He knew who I was and not only did he love me but he had something to share with me. He moved closer to me as his finger pulled the scroller on the you tube bar back to the start of where he wanted it to be…

Somehow, I believe from God himself, my non verbal severely autistic son with limited eyesight and no ability to read or write, had found a song on you tube that was saying everything HE wanted me to know…

Don’t weep for me, God made me this way. He’s chosen not to let me speak, but I hear every word you say…

Because the pieces of many colours symbolises what I am, it represents the hope of a cure that lies in God’s own hands” 

He pulled that bar back to the exact spot again and again as those words washed right over us both.
I was weeping for a child I thought I had lost but here that same child was showing me more than his own words ever could in a way so powerful, so emotional and so spiritual it was like God himself was in that room. 

I can not explain how he found that video. I can not explain how he understood those words and related them to himself. I have no logical explanation to the timing of me arriving in his room and him finding it or the fact he would scroll right back to the start of that chorus time and time again.
We sat there together for what felt like hours. The words of that song healing places in my heart I had not even realised were broken.

 
It was an experience I will never forget. My non verbal severely autistic son with complex medical and developmental needs brought me to tears by using you tube to communicate something I will never forget. 

Isaac can not speak to me but God can use any means he wants to give him a voice. That day he used you tube and this song.
Have a listen to what my son wants everyone to know: