I Don’t Want To Be An Autism Parent Anymore


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. 

Advertisements

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.

Who sees the hidden young carers?


As her brother climbed awkwardly into the swing she held it still for him as best she could before gripping the chain and gently pushing it forwards and backwards to keep him happy. For all her brother screams and attacks her and makes her life challenging she never stops wanting to help him and support him. She pushed that swing with all her might (he is 21 pounds heavier than she is) until he tired of it and wanted off.

 
The only one who noticed was me.

 
This is just one example of young children who are living their lives as young carers hidden from the eyes of so many around them.

 
Who sees the hidden young carers like my daughter?

Just days before her brother was having a difficult night. He has complex medical and developmental needs and is unable to communicate using speech. He was distressed and agitated and it was taking both myself and my husband to keep him safe and calm. He had just had a difficult meltdown where things had been thrown and broken and as he gradually calmed we were sorting out the mess and chaos surrounding him. As one of us cleaned up broken glass the other went to check on food that had been quickly left cooking downstairs. On my return I could not find my son in his room and neither could I find my daughter. I stood for a minute when I heard a noise I had not heard for days: children laughing!

His sister had decided to run her brother a bath to cheer him up. She had made sure the water was the right temperature and put in his favourite toys and here she was sitting on the toilet beside him checking he was safe like she was suddenly ten years older than her true years.
The only one who knew she had done that was me.

IMG_0791
Who sees the hidden young carers like my 8 year old daughter?

 
Another night recently my husband had popped out for a bit. My son had been bathed and both children were in their nightclothes when my son suddenly began throwing himself down the stairs screaming hysterically. I ran to him and held him tight as I tried to settle and calm him. His anxiety was at crazy levels and he was inconsolable. He was making so much noise I never heard the front door open and I never saw my 8 year old leave the house in just her pyjamas. The first I knew was when my son pulled me to the stair window and my heart missed a beat seeing my daughter the other side of our street closing someone’s front door. The second that door was closed her brother resumed his flapping and clapping like the world was suddenly back to being right again. When I spoke to my daughter later explaining how leaving the house is dangerous she replied ‘My brother needed me. I was only trying to help him.’ (As a side note I live in a very quiet side street and I am fully aware the door should have been locked. Hindsight is a great thing!) 

I was so glad no-one else saw her and I know she won’t do that again. But it still leaves the question who sees the hidden young carers like her?

 
There are young carers groups out there. They do a wonderful job for many young carers. Yet there remains so many young carers like my daughter who are ‘hidden’ due to a number of reasons.

 
My daughter is not recognised as a young carer because we are a two parent family and it is deemed her level of care for her brother is not ‘substantial’ or regular enough.

She is not recognised as a carer because she herself has some needs and it is deemed that due to these needs she is not able to care for her brother.

Until recently she was not considered to be old enough to be a young carer.

It was felt by professionals that we should not allow her to take on the caring role that she herself has readily and willingly taken on.

 
These are just a few reasons why young carers can be ‘hidden’.

 
Statistics say there are around 700,000 young carers in the U.K. That’s the ones who qualify as young carers but what about all the other precious children who are doing more than they should for a disabled or ill family member and no-one sees or knows?

 
I see my daughter so at least I can be there to support her and thank her even if others don’t.

 
There are 13.3 million disabled people in the UK. I wonder how many of them are being cared for today by a hidden young carer?

IMG_2490

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:

 

A Day In Mainstream School For My Autistic Daughter

I am so grateful that my daughter can talk and that she shares freely with me her worries and stresses of school. This day in the life has been written with her full consent and approval to help others see how challenging mainstream can be for some children with autism and how they can perhaps ‘hold it together’ all day but explode at home. 
img_2266Morning preparation 

I wake up and come downstairs and try not to think about school too much. I get my iPad or toys and set them up just how I like it. I know I need to get dressed and eat but until things are ‘right’ I can’t think about those things. I need to do one thing at a time so please leave me alone. Let me do it my way. Constantly asking me questions is so stressful as is nagging me about time. By the time we need to leave I am already stressed and anxious.

 
In the playground

I am scanning. This is so hard to see who I need to see when everyone is dressed the same and moving around. The noise, the unpredictable movements, the bags on the ground…that’s a lot to take in for me. I only want to find my best friend and the longer it takes to find her the more I get worried. What if she is off sick? What if she has an appointment today?

IMG_2395The bell

Bells panic me. They mean I have to move somewhere quickly and I sometimes get stressed. Bells mean pressure and children running and they might push me over. I stand in my line and face forwards making sure I don’t look at anyone. The teachers shout about not talking and standing straight but I am doing those already and not sure what I should be doing differently. I turn to see if everyone else is doing what I am doing and now my class is pulled up for me facing the wrong way! I feel to blame. I feel so anxious. I feel different. 

 
Getting to class

I have to remember to put my bag one place, my packed lunch somewhere else and then hang my coat on the right peg. It can be confusing to remember all that while others are talking and moving all around me and the lights are so bright inside. Sometimes I wait until most of the others are in the class but then I worry I will get shouted at for taking too long! Sometimes I forget I have my school bag as it is on my back and I can’t see it! How can everyone else do this so quickly and easily and I can’t?

Class

I listen so much. In fact I listen so hard to everything that sometimes I can’t do my work because I need to stop and listen to everything the teacher says in case she is talking to me. I want to write neat because I don’t want a row but then they say I need to work faster and I can’t do fast and neat. It is hard to concentrate with others so close to me. They move about and talk and turn pages and it is so distracting sometimes. The walls have so much stuff on them, I can hear the tap dripping and I can hear people walking about.

I am scared to talk in case I get in trouble.

Sometimes I just can’t do the work. Yesterday they wanted us to do a senses poem about fireworks. They told me to imagine being at a bonfire with fireworks but how can you do that if you have never been to a bonfire before? I haven’t. They told me to write about what I would touch but you are not allowed to touch fireworks so I can’t write anything. They told me to write what I can smell but all I can smell right now is disgusting school dinners and I can’t even spell that. I just leave that one too.

Then the teacher gets me in trouble for not doing the task. I want to cry. The tears won’t come out.



Playtime

I don’t understand this bit. You play with toys so why call it playtime when there are no toys? Just call it ‘talk time’ or ‘stand in the playground time’ instead. I take my own toys out. Then it rains and we have to come inside and I can’t play with my toys and it is so confusing for me. I don’t like changing things. I get cold at playtime because it is hard to fasten my coat and if I take my time the people tell me to hurry up and go outside so I just can’t fasten it up now. I have one area I like to stand and play with my one friend. We play the same game every day. We like it that way. I want to play with others but I can’t because I don’t understand what they are playing. They don’t have toys. I can’t work out made up games like that.

Lunchtime

Lunchtime is horrible. We have a short time for everyone in the whole school to eat and they want us all to line up and take turns and sit at huge tables with other children I don’t know. I just want to sit down and get time to eat and not have to hear chatter chatter and smell what everyone else has that I don’t like. It is far too noisy and busy and yet no-one will open my yoghurt or peel my banana. I feel lost and confused and just want out of there. 

P.E

I hate PE so much. I never know what we are going to do. Sometimes we do balls and sometimes running and sometimes sports. I hate it all. I know I can’t do it and people laugh. How can I catch a ball when there is so much else going on in the same hall at the same time? I can’t focus. I am so cold. My legs don’t like not having trousers on. My arms miss my cardigan so much. I once fell and hurt myself in PE so I don’t run now because running is dangerous plus they said at assembly to not run in school so I don’t run. Then they tell me to run and I want to ask ‘but you said not to run in school’ but my voice won’t work. I want to cry. The tears won’t come.

I do like school. I like learning and I like doing work. I like having a desk and I really want to be star of the week. I like the other children though I don’t know if they like me. I want to tell you about things that have bothered me like being told to work quicker or not eating. I am tired from it all and now I feel safe. I want to cry. This time the tears will come so please let them. 

img_2186
I am ok. I just need to let the day at school wash away so I can rest.

School can be hard but then everyday can sometimes be hard when you have autism like me. 

The Life Of An Autism Sibling


In the back hall of a church she watched as her brother climbed a toddler slide. As he sat at the top of the slide flapping he lost his balance and fell off. He was shocked and shaken as he laid there confused and hurt.

While the adults checked him over his sister ran around the room looking for all his favourite teddies, then sat beside him stroking his hair and whispered: You are ok. Don’t be sad. You are ok.
She is smaller than her brother, weaker than him physically, and much more timid in nature.
Yet she is strong. 

She is the sister of a child with autism and that is something very special. 
She copes with screaming and has learnt to be a peace keeper.

She copes with a brother who is controlling and she has learnt to compromise.

She copes with a sibling who rarely sleeps and she has learnt to rest as and when she can.

She copes with the unfairness when her sibling does not understand rules and she has learnt patience and maturity beyond her years.

She copes with aggression and responds with peace.

She copes with his iPad on full volume and responds by showing him how to plug in earphones.

She copes with people staring at him and she smiles at them and puts her arm around her brother in support.


She copes with getting less attention than she deserves and has learnt to play herself to cope.

She instinctively knows and understands now when he is experiencing sensory overload and leads him to a quieter place.

She opens snacks for him because she knows he does not have the co-ordination to do it himself.

She has learnt that he can not join in her games and copes with that disappointment better than many adults would.

She fights her brothers corner.
She keeps him safe.

She changes the TV channel when he screams at a show he does not like.

She even makes hand dryers work for him because she knows how much he likes them.

The life of an autism sibling is not easy. They are often over looked and expected to cope. They miss out on so much because of the needs of their sibling and have to adjust to family life dominated by an invisible condition. A lot is expected of them beyond what other kids deal with.

It takes strength to cope when your brother screams daily. It takes strength to understand certain toys can not be bought because they pose a danger to your sibling. It takes strength and maturity to realise and accept that having friends around to play may be more difficult than it is for others.

To watch your brother or sister struggle with something you do easily and not boast about this, to stand up for your sibling when others mock them, to cope with public meltdowns and not be embarrassed: you are amazing! 
Let’s hear it for the autism siblings! You all deserve the lime light for once!

The Blind Bag Secret That Has Saved My Sanity


My daughter is a collector. She collects all sorts of things but her most favourite things to collect are small, inexpensive toys she can put in her pocket and carry around. She loves little animals, little cars, small trains, little figures of all sorts and superheroes…she is what is known as blind bag heaven! 

She begs me constantly for these little bags you find in toy shops, corner shops, newsagents and at the cash desks at supermarkets. She loves the surprise, the fact you can collect them all and the magic of opening those little bags. 

Like so many children around the world she even spends hours watching others opening and ticking off little toys on collectors lists. There is just something special about these surprise bags that seems to bring her great delight….

Until that is she gets a duplicate! 

Then she gets most upset, feels let down and begs for yet another bag to try again. 

I had so many discarded toys, so much disappointment and so much money wasted that I was so close to saying she could never have one of those crazy bags ever again. 

Seriously I was finding myself in shops feeling those things trying to figure out if I could guess which one was inside! The more she would collect the harder it got and I would shake those bags, try peeking inside and be so mad at myself if I purchased a bag only to find yet another duplicate to be forgotten about and tossed to the bottom of the toy box. 

My daughter has autism and so swapping her duplicates was never an option as her friends were not interested in the same things she was. So the pile of excess figures, trains and cars just kept growing. She never ever asked for anything else and she delighted herself in lining up her treasures eagerly waiting on the last few to tick off. It became an obsessions for her. 

Then one day as I stood in a shop pulling bags off to feel and shake I could hear footsteps coming towards me. A hand tapped me on the shoulder and politely asked me if she could help me. I was sweating but explained how my daughter loves blind bags and was looking for a certain character and I was hoping to be able to figure out which one was in the bag for her. 

And that was when I was let into the secret that saved my sanity.

It IS possible to know what is inside those little bags and here is how:

The bags are coded. Seriously every one of those bags whether it is Thomas The Tank Engine or My Litrle Pony or Imaginext figures…every bag has a code hidden somewhere that prevents you from purchasing endless duplicates. You just need to know where to look! 

 
I walked out that shop like I had just been given a million dollars! 

I got home and did a quick google and low and behold I may not be the first person to have unlocked this mystery but it still appears so many others have no idea! 

So I wanted to share, not to be a spoil sport and take away any of the hidden surprise element to these bags but simply to let others know and give them an option to check if they wish.

My daughter has autism and duplicates to her have caused so many meltdowns that I would hate others to be going through the same when there is a secret to save parents sanity. 

You may wish to read this and keep the secret to yourself or you may feel this is something that could help a friend. What you do with this information is up to you. 

For me this blind bag secret has saved my sanity so much I HAD to share incase someone else was fed up with the tears and tantrums of duplicates too.

They do say these things are a numbers game..they were right after all!