The One Thing I Want in Life for My Autistic Son

My son has lots of difficulties in life. He can not talk, he can not read, he can not write. He struggles to join in anything others are doing, preferring instead to flap at lift doors opening and closing or turning hand dryers on and off repeatedly. There is a long list of things I would love him to be able to do including communicate his needs, be more independent, understand what people are saying to him or even use cutlery.

Yet two days ago a photograph sent home in his school bag made me suddenly realise that all I really want for my son is one thing: to be included.

My son attends a school for children with severe and complex needs. Many of his ‘friends’ are wheelchair users, or non verbal or perhaps require to be fed differently via a tube. Some have behaviour challenges and others have genetic conditions or learning delays, but they all have unique and wonderful personalities. The small class sizes and increased staffing are necessary for all of the children, most, if not all, of whom will require support all of their lives.

However his school building is modern and custom build. One of the most remarkable things about the building is that it is shared with another school. This is a new and innovative idea where I live but one that seems to have huge benefits not just for complex needs schools and mainstreams but for schools of different faiths too. The building announces proudly to the community that we are all one and we are all the same even if we appear to others as different.

I have to be honest and say I would rather my son did not have some of the physical and cognitive challenges he faces daily. I wish he could speak, I wish he could read and write not because it would make me feel proud as a parent, but more so because it would benefit him so much. I wish he could attend mainstream school like his sister does because he would be known in the community and have friends locally he could play with, not because I have any issues at all with the challenges he faces. He is loved immensely for who he is but it would be beautiful if he was with his peers much more rather than separated and educated so far from home.

So getting the photograph sent home with him spoke so much to me. The photograph shows my son with children from a mainstream school playing a game. He is being supported not by specialist trained teachers or support staff but by another child. He is being included.

That is what I want above anything else for my son. I want him included as equal in society.

I don’t want him pitied.

I don’t want him ignored.

I don’t want him excluded.

I don’t want him mocked.

He has had enough of those things already.

Yes there are things my child can’t do, but there are things every one of us can’t do either!

The children in the photograph had no need to know the list of diagnosis my son has. They didn’t need trained in the latest model of therapy for those with autism or have to have hours of training in physical therapy. They didn’t see a child who can not speak or who is unable to read. They saw a child called Isaac and did what they could to have him join in to the best of his ability.

See my child. See him for who he is and not all the things he can not do. See him as a child who is worthy just as every other child is. See him as a peer.

Please let this photograph help change society. Please let this be the generation who sees people as equal.

Please give me hope that the one thing I want for my autistic son may actually happen one day.

Maybe you can’t include MY son but you won’t have to look far for a child who may also have autism, or a genetic condition or who struggles. Send them that party invite. Encourage them to join in the game. Offer to push them on the swing at the park.

Every act of inclusion is an act of love. I promise you it is worth it. I promise you everyone will gain from this.

Advertisements

Why Has Society Got Such An Issue With Parents Being Carers To Their Own Children? 


‘What do you do for a living?’ 

‘I am a carer.’

‘Oh wow. Where do you work?’

‘From home. I care for my disabled son.’

‘Oh, you mean, you are a stay at home mum?’

——

What is the problem with people understanding the fact that I can be a mum and a carer for my own son?

 
Even within the community I am part of (families with one or more children with a disability) some still don’t understand. They see what I do as what every mum would do and to an extent they are right.
The issue is my son’s needs are so great at present that I am unable to work. He has complex needs and is therefore entitled to a benefit for disabled people. Part of that means someone is able to claim a separate benefit to care for him. Why can’t that be me since it is me who is doing that job?
If I were to devote the same hours to caring for my elderly mum, or for my next door neighbour or even a friend I would be seen as noble and brave and most people would be urging me to claim the carers benefit to cover my expenses of taking them to hospital or making them meals or even as token payment for my hours of care. The issue only seem to be when I mention that the person I care for is in fact my own child.
You see people are able to see that caring for someone else necessitates a clear distinction of roles. There is an expectation of a carer to put so many hours in, put the other persons needs first, make sure the person cared for is getting the best services possible and facilitating them to attend places they need to go to. When you give birth to a child there is an assumption that a parent will do all of that for a child regardless.
But there is also an assumption that at some point the child will became more and more independent and the caring side of parenting (the formal looking after side rather than the emotional caring which lasts a lifetime) will gradually fade.

8E1710F8-9D80-4EB4-87E0-AEDED862BAF9
There was a time in my son’s life when I realised that for him this was never going to be the case. It was not a day or even a week but a gradual realisation that the child I gave birth to was not meeting milestones and was never going to live independently in any way. At 9 he can not speak. He has no concept of using the bathroom on his own. He can not open a packet of crisps nor use a knife and fork. He can not dress himself.
His care needs are 24 hours a day 7 days a week. He started receiving his disability benefits at just two years old. I never started claiming anything as his carer until many years later. When he was still of pre school age, even though he never walked  until after 3 and he was uncommunicative with very limited understanding, I still viewed myself as his parent much more than any sort of carer.
When he began school I looked at returning to work either part time or full time. That was the beginning of me realising I was not in any way a traditional parent. The school would call regularly just as his nursery had done previously. His medical appointments totted up quicker than I could keep up. His diagnoses accumulated continually. His development, on the other hand, stalled. Sleep was just a few hours a night while screaming could last much of the day. I sat in so many hospital waiting rooms dreading what doctors would tell me next.
I googled what a carer was:

A carer is anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support. (Www.carers.org) 
I googled what a parent or parenting was:

Parenting or child rearing is the process of promoting and supporting the physical, emotional, social, and intellectual development of a child from infancy to adulthood. (Wikipedia) 
I thought about my child. If parenting is supporting his development from infancy to adulthood I was definitely a parent. But I looked at the roles of carer and realised my child has a life long disability. He wasn’t going to get better and at no point in the foreseeable future would he cope without my support.
I could not get a job because my commitment to him was too high. He could not access after school care and neither could a child minder look after him. Family members could not look after him either as his physical care needs were too high. I finally realised I was his full time carer as well as being his mum. 
I understand that my role is complex. I understand that many would say ‘well surely any mum of a disabled child would do that?’. I see you metaphorically scratching your head trying to figure out if it is right that a mother can be paid to care for her own son.
While you think about it I am wiping dinner from my son’s face. I am holding his hand while he walks, I am lifting him into his car seat and strapping him in. I am watching him through the night as he is wide awake yet again. I am bathing him and changing his continence products.
I can’t wait for society to decide if I am caring: I am far too busy being my son’s carer. 
There is no-one else stepping in to the role after all.
Whether society wants to accept it or not thousands of parents in Britain today are caring for their own children as well as parenting them. 

I am just one of them. 

 

A version of these his article first appeared on Firefly here


Autism: When your child’s obsession consumes the whole family

My son love lifts. He has done for many years now. He watches lift doors open and close on YouTube, he knows every shop in our town and beyond that has a lift, and when he has hospital appointments we HAVE to visit every lift in the entire hospital. 

It is consuming! 

It rules his life: He is drawn to lifts like a magnet is drawn to metal. He can not simply walk on by or use it for the functional purpose of just moving up one floor. No! He has to press every level, every single time. He has to get out at different floors and watch the same doors open and close from every possible angle. He has to flap, dance and giggle at people getting in, people getting out and the repetitive announcements telling you which floor you are at. He has to touch every wall, put his ear to the back and have a fit of the giggles at me preventing him from pressing the emergency alarm…at every single level! 

It is consuming!

I can’t just go to the shop to pick up milk or a loaf of bread because my local supermarket happens to have a life in the car park and two inside the shop. He either can not come with me (which involves a complete meltdown because despite having limited understanding he seems to be able to sense I am going to somewhere with a lift!) or he comes with me and I risk leaving having only made it to the lift! Moving him on is almost impossible. It involves him self harming, screaming, physically dragging him and sometimes calling for backup. It is not pretty. 

It is consuming. 

He loses all track of time in a lift. It is like an entire world to him. He loves the noise, the echo, the shiny walls, the confined space, the predictability, the voice that comes out at just the right time, the buttons he can press, and the feeling of it moving. It is exciting. It is his ‘happy place’ and he would stay there all day every day. I can’t let him do that though.

So I film him so he can watch himself back. I use ‘first and then’ and desperately bribe him to come away. I use timers and warnings. I use visuals and talkers. I could send God himself to rescue him but he still would not care. 

He is consumed by his obsession and nothing will move him on. 

Isaac is loved deeply. We allow him time at his obsession even though his sister would rather stick pins in herself than be at a lift! But what do you do when every family outing, every waking minute on YouTube and every google search (for images as he has no ability to read or write) is all consumed with your child’s obsession? 

There has to be a balance. Isaac has no understanding why he can not be utterly saturated in his own obsession. He has no awareness of the needs of others or that shops even have closing times! He craves the sensory feedback of lifts like you and I crave water and food. To deny him that would be to destroy him. 

So what do you do when you are consumed by the needs and wants of one member of the family? 

It is hard to get the balance right. We have tried the splitting up idea where one adult has the thrilling day of lifts (yes I am being sarcastic!) and the other entertains his sister. That causes resentment eventually. We have tried days without lifts (that was that awful screaming you heard ringing in your ear thousands of miles from me). We have tried compromising (have you ever tried to reason with a severely autistic non verbal 8 year old? It isn’t fun!). We have even tried the seesaw approach of you get a lift and we all get something we want too. That went down like a lead balloon!

There is no ‘little bit’ when it comes to an autism obsession. There is no ‘forget about it’ days. 

It consumes them. It consumes us. 

We are trying to teach our son patience, self control and limitations. Meanwhile he has other ideas…

P.s. I spent so long at a lift today I typed most of this up while watching him! 

His obsession really has consumed me now too…I am even writing about it! 

That is what happens when your child’s obsession consumes the whole family! 

——-

This article first appeared on http://www.autismawareness.com where you can find other great articles and information on autism.
A link to the original piece can he found here.

YouTube and Autism: The Magical Combination 


As I browsed the shelves of a local toy shop with my kids recently my daughter became rather animated and excited over something she saw.

“Hey, mum, I know what this toy does! I’ve seen it on YouTube!”



She had indeed. She knew everything about the toy from who made it, what came with it and she even knew the best way to ‘unbox it’.

 
It was not expensive and she had some birthday money to spend so we duly took the toy to the checkout where staff smiled at my 8 year old and said, ‘Good choice! Did you see it on YouTube too?’

Apparently the way to sell toys now-a-days is to simply have Ryan from ‘Ryan’s toy reviews’ or Cookie Swirl C film themselves buying them, taking them out the packaging live and playing with them. Kids are hooked on channels like this and many others and it is changing life more than we may realise. Some of these channels are so popular they get more views in one day than well known TV shows. 

 
My daughter was delighted with her purchase and could not wait to get home and comment to her ‘virtual friend’ on her favourite channel that she too had the same toy now! As we drove home she chatted away about how The Engineering family had not reviewed her toy yet and maybe they would soon too but that Cookie Swirl C loved it and she had promised to make a new video of it this week.

 
So what is my point in sharing all this: Well you may not know this but my daughter has autism. She finds communication and social interaction challenging. She is seen as different, she struggles with huge anxiety and leaving the house can be a massive challenge as transitions cause her so much stress.

 
To see her excited in public and able to overcome her anxiety enough to be able to speak, to communicate so freely and connect with me, to see her interested in something other children also like; these are all magical to me. Autism and YouTube is a magical combination to my daughter and a magical combination to me too. 

img_2261

My daughter is a visual learner and needs sensory stimuli to aid her learning. YouTube provides this so we use it to learn times tables, spelling, topic work for school and so much more. This way she is seeing, hearing, able to repeat parts over as often as needed to process, and she is in control by using her own tablet. It’s truly magical to see her finally understand something she could not grasp previously because she watched it on YouTube.



When we have to go somewhere new or unfamiliar like ten pin bowling we can type into YouTube what we need and hear and see the experience before hand. It takes social stories to a whole new level! It prepares her for sensory experiences in advance and she is able to suggest having ear defenders in order to cope. This makes her feel safer and more in control and makes the whole family at ease. That’s amazing!

 
When she struggles to know how to play with toys she can watch so many others (adults and children) play with play doh, playmobil, Thomas tank engine trains and so much more to learn ideas. While she may copy them she is still using the toys appropriately which is more than she was able to do before YouTube. That is magical.

 
YouTube helps her make friends and connect with others in a way that nothing else has. While her friends watch different (more grown up) TV shows or attend social activities she can not cope with they totally understand and connect with her when she mentions things she has seen on YouTube. It’s like suddenly she speaks the same language as everyone else. That is special.

4E01DC63-E617-4295-ABDE-12A6B5A77BD8
When she struggles to sleep (common with autism) we can find some quiet soothing music on YouTube, when she finds food stressful we can find a video of kids in a bath of jelly to make her see food is not to be feared, and when we are going out we can use a visual countdown on YouTube to help her transition.

 
If she likes YouTube then I will find ways to like it too. It is not just about nursery rhymes with Little Baby Bum or Stampy playing Minecraft, YouTube can be used to help autistic children (and adults) in so many ways. 



Oh and don’t forget that no matter how unusual their obsession may be there is most likely someone making YouTube videos all about that too!

 
Is your autistic child addicted to YouTube?

 
It doesn’t have to be all negative. Autism and YouTube can sometimes be the most magical combination ever!  

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. 

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