There is nothing ‘high’ or ‘functioning’ about her autism at all.

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My daughter attends her local mainstream school. Her grades are average and her behaviour perfect. She is mostly happy to go to school and is never later with her homework. She appears to be an ideal student and school report ‘all is well’.

But all is far from well with my child!

She no longer receives occupation therapy, or speech therapy or any other support in school. Her grades are considered a reflection of the fact she is coping well and therefore her autism is deemed to be ‘high functioning’ simply by the fact she can answer simple times tables questions or write a story.

But there is nothing either ‘high’ or ‘functioning’ about her autism in any way!

The dictionary defines high as “great, or greater than normal, in quantity, size, or intensity.”
My daughter has high ANXIETY, high EMOTIONS, high SENSITIVITY but not high autism!

She struggles with noise, touch, change, lights, attention, demands placed on her, eating, drinking, toileting, self care, socialising and understanding the world. Just because she can read a book, sit quietly in a classroom and sing in assembly does not make her autism any less.

The dictionary defines ‘function’ as “the kind of action or activity proper to a person, thing, or institution; the purpose for which something is designed or exists; role.” Is it ‘proper activity’ for a person to break down in tears and make herself sick because the school has changed her gym day for a few weeks? Is it ‘proper activity’ for a child to be unable to interact at all with other children in the school playground? Is it ‘proper activity’ for a child to stop eating and drinking completely due to anxiety?

Her autism does not disappear when she is at school. All that happens is she conforms. She ‘follows along’ like a sheep in the hope that no-one notices. Inside she is breaking up, welling up and churning up but all anyone sees is a child who can write in a jotter, sit on a seat and tidy up when asked.

A child with autism in mainstream school should never be assumed to have ‘high functioning’ autism simply by the fact they are in a ‘normal’ school classroom. Just because they have the same uniform on as all the others does not mean they are the same.

Inside they are either feeling sick, shaking with anxiety or screaming. The flickering light is causing them pain, the humming of the radiators is making them want to cry and the child next to them leaning on their desk or touching their pencil case is causing them to want to run away. Can you see any of that or do you just see a child with a pencil in their hand writing?

School don’t see the pain in her eyes when I pick her up at three o’clock. They don’t see the teeth grinding, the skin picking and the disengagement. They don’t see the lining up of everything, the screaming and the cowering in a corner. They are not dealing with the sleepless nights begging me to come in bed beside her or the full on food refusal because her anxiety is making her ill.

They look at test scores, conformity, and academic skills and decide that my child at best has ‘high functioning autism’ or at worse is ‘fine.’

She is neither.

She has autism. Simple as that. She is every bit as autistic as her non verbal brother who has severe learning difficulties and attends a special needs school.

Don’t dismiss her struggles based solely on the school she attends.

School can say what they like but there is nothing ‘high’ or ‘functioning’ about her autism at all.

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What it is like to parent a child who can never be left alone

When your baby is born you promise them the world. You promise to look after them, keep them safe and be there for them. When they are tiny and lying so innocently in your arms fully dependent upon others to meet all their needs it is so easy to promise them you will never leave them.
The reality is though that children grow. As they grow they need to learn responsibility, resilience, and independence and all three of these require periods of not being constantly supervised by a parent. I want to say I never ever set out to be over bearing, or a so called ‘helicopter parent’ or paranoid in any way.

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Unfortunately though life changed the way I parent my son. He has multiple difficulties and wether I want to or not he simply can NOT be left unattended at any time, even at age 8.
Going to the bathroom is such a huge risk I leave the door wide open so I can see him and hear him, or I take him with me. Simple tasks like tidying the kitchen can only be done if I am able to see him completely or he is in the same room as me. If I leave the house for any reason I have no choice but to take him with me. I can only shower or bath when he is at school unless there is another adult here to watch his every move. Even popping to the car in my own driveway is a risk I can not take most days.
I do not want to live like this but I have no choice. I am fully aware how damaging this level of hyper-vigilance is to my son and to myself but I am actually doing it because there really is no other way. School have to show the same level of vigilance as do his respite centre so it isn’t just me.

He simply can not be left alone, ever.

Here are a few reasons why:

1. He has no language.

That poses huge risks. He can not ask for help, or shout if in danger. He can not ask to reach something that could fall on top of him and he can not tell us where he wants to go. So I have to be with him.

2. He has no concept of danger. 

He would open the house door and stand right in the middle of a motorway and have no idea. He would eat grass or dog faeces or climb out a window. He would play with knives or drink bleach. I can not leave him for his own safety.

3. He sensory seeks all the time.

He seeks out water but can not swim. He seeks out lights…even if these are car headlights. He loves the noise of smashed glass…he climbs…he swings on doors…he bites and kicks…for his own safety and the safety of others he MUST be supervised.

4. He is violent.IMG_0449

One minute he can be the most loving, gently child but that can change in a moment and he can attack someone. While I know some of his ‘triggers’ for the safety of his sister he can not be left in a room alone with her or anyone else.

5. He smears.

As awful as this is to talk about it is real for so many families. Left alone for less than a minute and so much damage is done. No-one benefits from the clear up and the less it happens the better for everyone.

6. He eats everything.

Bedding is a current favourite but we have had clothing, toys, jigsaws, paper, pencils, lego, teddies and money all eaten regularly. The danger of that is very obvious and unless we wish to have a season ticket to the local hospital he MUST be watched.

7. He destroys.

He is the master of opportunity. Sensory seeking, no concept of danger, little awareness of cause and reaction and no understanding of empathy mean he has fed his sisters tropical fish milk, talcum powder, full tubs of fish food and several Thomas tank engine trains. He has thrown and broken expensive technology like iPads and cameras, he has blocked the toilet with all sorts and poured all manner of things into the bath tub. While he may have no understanding of his actions we do and it is vital this behaviour is prevented as much as possible. The only way to ensure that happens is to be always vigilant.

8. He has seizures.

Medically the consequences of leaving him unattended could be fatal. He has had seizures at the top of flights of stairs, outside and during the night. He could choke on his own vomit, badly injure himself or knock himself out. He must be watched.

9. He is vulnerable.

While he may be living in his own ‘bubble’ sadly he is at high risk for bullying and abuse or wandering off. As his mother I have to protect him. That means having to be with him. It is hard to trust when he has no communication to tell me anything.
People tell me I need to relax and that he needs to learn independence. What they don’t understand is that he never will be independent. The level of care he has now is what is likely to have to be in place throughout his adult life. It really is the only way to keep him safe and to keep others safe too.

I am tired. I cry. My life is severely restricted by the needs of another person. If I want my son to stay alive and have any quality of life I have no choice but to never leave him alone.
What’s it like to parent a child who can never be left alone? 
Lonely.

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I’m not perfect but I am perfect for them


I have a confession to make: I got annoyed at my children today! What? You have done that too? Seriously why are we so afraid as parents to admit we are less than perfect.

 
Last week I took my kids to the dentist at the wrong time. I sent my son to school the week before without any lunch. He is not able to talk so could not tell anyone. I blame sleep deprivation personally.

 
I do my best. It is what we all do. 

 
But still we never seem to feel we get it right all the time. That feeling is magnified when your children have extra support needs.

 
I remember eagerly buying push along toys, walkers and sit on cars for my toddlers, only to have them sit unused in a corner as my son was three before he walked, by which time they were all far too small for him. I tried to do the right thing, the ‘perfect’ thing, but for my children it was anything but perfect.

 
I sang nursery rhymes with my babies. I read to them, talked to them all the time and blew bubbles. Yet still my 8 year old to this day can’t say a word. I did all the right things but for him it just wasn’t to be.

 
I bought this wonderful potty for my kids. You know the ones that sing to them when they pee and even looks like a toilet. That was a total disaster!

 
I took my pre-schoolers to museums, cafes, soft plays, garden centres and farms. One of them screamed all the time and the other was terrified. What seemed the perfect thing to do was in fact anything but for my autistic children who struggled with sensory overload everywhere we went. 

 
imageSo I decided to stop being the perfect parent and instead become the perfect parent to THEM. That meant taking my son to see lifts. It meant taking them on train rides and joining in games of lining up toys. It meant accepting them for just who they are and allowing them to be autistic.

 
The best toys I ever bought them were second hand. I gave up full time work to care for them so I can attend all their meetings, keep up with all their teams of professionals and ensure they get the support they both need. It means I am there to keep the routine they need to feel secure and calm my son when he is in meltdown.

 
Being the perfect parent for them means sometimes making the same meal every night for a week just to see them eat. It means trailing shops to find the only juice my daughter will drink. It means cutting out labels in their clothes and ensuring the materials are soft and not too ‘busy’ so as not to upset them. img_0046It means reading the same bedtime story every night for two years in exactly the same way. It is answering the same question for the hundredth time and remaining patient.

 
Do I get annoyed at them? Of course I do. I am human. Do I annoy them? Absolutely! Do we love each other and hug often? Yes we do. 

 
I am never going to be that parent who shows off a shelf full of trophies my child won at dancing or football. I am not going to be the parent who home makes Halloween costumes or bakes the most incredible birthday cakes. My kids have way too much screen time than is recommended and my son can’t even write his own name at 8 years old!

 
But I know what triggers a meltdown in my son and how to avoid it. I know what makes my daughters anxiety reach sky high and can work through this with her. I know the limitations of my sons eye sight and the fact he can not see pale colours. I know exactly what reading book my daughter has this week and what characters she is into just now. I know their routines for bedtime and school days and follow them like a robot so as not to upset them.

 
Those things don’t make me the perfect mum, but they do make me perfect for them.

 
I am blessed to have them. We are blessed to have each other. None of us are perfect but together we are the perfect team.

My children have autism: I need therapy more than they do.


I remember the very first day I admitted to myself that my children were struggling. They were both 18 months old and neither of them were walking. One never gave eye contact not did he interact much and he had no language. The other could not crawl or roll or even pull herself up. Both relied on routine for everything!

 
I remember one Friday late afternoon making a call to my health visitor and leaving a tearful message on his answer phone.
Looking back that afternoon epitomises the entire point of this blog. Here was I in tears worried about my children while they were happy sitting on the couch watching TV.

 

They were happy…it was me who was sad.


As time went on and appointments started piling up for them both it became quickly apparent that I needed to do every bit as much as my children. Occupational therapists gave ME exercises to do with them, speech and language therapists sent ME on a course while the children were happy at home in their routine with babysitters. The paediatrician gave ME advice while only briefly examining my twins. Early intervention support relied on ME doing more with the children to ‘bring them on’. It felt clearly that I was to blame.

 

While my son scanned object after object across his eye line repetitively, happy doing his own thing, I was silently breaking my heart. When all the other children ran into nursery while my daughter needed carried in, I was the one who emotionally struggled.

 

When my non verbal, not toilet trained, highly delayed son started full time school years later he settled much quicker than I did. He assumed everyone would look after him while I knew otherwise. He had no awareness of the danger of getting into a taxi without mum (he hardly acknowledged who I was) nor any concept of what school was and just went with the flow. Meanwhile my anxiety rose to a whole new level knowing I was unable to know anything about his day, who he was with, what he had eaten or wether or not people were looking after my vulnerable baby.

 
I needed support to help me with that constant anxiety. 

 
When my son has extreme meltdowns lasting hours and he is unable to communicate why, that affects us both. The fact I now have an 8 year old who I still can not communicate with on any meaningful level has damaged me.

 
I need help to work through my feelings of failure. 

 
When I see other children riding bikes, playing with friends, going to dancing or any other of hundreds of ‘normal’ things both my children really struggle with my heart breaks.

 
I need people to understand that some times I need to mourn for the things my children will never achieve.

 
My body is carrying a heavy load. I am on full alert 24/7. I have professionals watching our every move, quick to point out if they feel my children’s struggles are down to my parenting. My mind is constantly alert thinking of our next appointment, the next thing I need to prepare my children for or the next person I need to chase up. After years that affects your body and your mind in ways you can not control.

 
I have had counselling and also have to take tablets to keep depression at bay. My thyroid is whacked and my blood pressure keeps rising. My adrenal glands are failing.

 
My doctors tell me to ‘rest’ but autism never rests. As a parent to two children with autism I can not afford to rest. There is no time off.

 
My children are generally happy. The world they live in is safe and predictable. I need to keep it that way to protect them. They need me. The reality is they always will.

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They are perfect the way they are. They don’t even see themselves as different. It is because I am NOT autistic that I see things differently. I see how they could be mistreated and abused. I see them struggling to get jobs. I see my son requiring support all his life and never living independently. I see their vulnerability. I see their lack of social understanding. I see their need for constant routine. I see their naivety.

 
They don’t need therapy to help them cope with any of that. But I do. 

What if his challenging behaviour is actually a cry for help?

If you were walking home in the dark one night and heard a female screaming for help would you see those screams as challenging behaviour?

What if you were in a hospital and heard a child cry? Would you see that as challenging or would you be more sympathetic?

We all understand the lady screaming on a dark night is desperate for help. We all understand the child crying in hospital is scared and does not understand what is going on around him.

So why when my child with learning difficulties and autism screams and cries does everyone suddenly see it differently?
Professionals have labelled my child as having ‘challenging behaviour’. He kicks, pulls hair, scratches, bites, screams, cries, throws himself down stairs, throws objects in temper, head butts the floor, and attacks people. He is now almost my height and a third of my weight. He is only eight!
He can also be loving, gently, funny, happy, warm, lovely and wonderful. 

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Like the lady screaming in fright on a dark night there are times he is scared. Right now he is terrified of open doors. His anxiety soars making his adrenaline pump through his little body to an extent he has to react. His challenging behaviour is his way of communicating fear and anxiety.

Professionals tell us to restrain him, speak to him calmly and discipline him. Would we do this to the lady screaming on a dark night? Most people would in fact rush to help her yet people seem to rush to get away from my son when he has the same feelings of life being out of control. Both scream…both are full of fear…yet we call one challenging behaviour and the other simply a means of communicating for help in a desperate situation. Perhaps we need to realise both are the same?

Like the little child we hear crying in the hospital ward who is worried, in pain, and not understanding what is going on around him so too is my son at times when we take him places he isn’t familiar with or he doesn’t want to be there. Why do we have sympathy for a little child in a hospital ward yet look in distain at my son when he cries at the supermarket aisle? 
My son has no speech. Behaviour is his way of getting his message across. How can he communicate that he did not want chicken nuggets for his dinner? One way is to throw them at me. Instead of punishing that behaviour or seeing it as challenging I prefer to see it as communication and frustration at not being able to say what he wanted. I don’t want to encourage his behaviour but until I can teach him a better way of communication I have to understand his method of ‘speech.’

When he drags me out the door and onto the street some professionals feel I should ignore him or restrain him. How then would he be able to show me the reason for his fear?


Yes I would love him to be calmer, happier and less physical at times. I do discipline and teach him as his difficulties allow but I want society to stop seeing my child as simply having challenging behaviour and see him as a child crying for help exactly like a woman on a dark night or a little boy in a hospital ward.

 
Perhaps the challenge in his behaviour is actually a challenge to society? What if the challenging behaviour is actually a cry for help that we are all ignoring?

 
Perhaps in that case we need to challenge our own thoughts and not his behaviour?

When your child is diagnosed with autism and then dumped

img_6296When I broke the news on my social media that my child had just been diagnosed with autism spectrum disorder I had a mixture of comments. Some people were sympathetic, others shocked, and others commented along the lines of ‘this should help you get him all the help and support now.’

It is incredibly common to hear that. But it is a myth.

Both of my children were diagnosed with autism and then dumped.

Having a diagnosis has not enabled them to get the support they need.

Even with a diagnosis my non verbal son still can’t access NHS speech therapy.

Even with a diagnosis neither of them are currently receiving occupation therapy despite both of them having acute sensory needs and neither able to do self care such as dressing themselves.

In actual fact BECAUSE my daughter has a diagnosis of autism she has actually been REFUSED access to mental health services.

They have been discharged by educational psychologists claiming there is no need for ongoing support.

Despite being diagnosed their educational support plans are continually threatened with closure.

Even our trusted community paediatrician who has been monitoring their development for almost 8 years is suggesting discharge since there is apparently little more she can do to help.

On the actual day of diagnosis we were handed and leaflet and sent on our way. This is happening to so many thousands of others and it needs to stop. Families are emotionally vulnerable, confused, desperate for support and looking for hope. One leaflet is not ok.

IMG_2182My children had more professional support BEFORE they were diagnosed than they have had after!

Before they were diagnosed we had an abundance of meetings, successful claims for dla with huge backing from every professional we came into contact with, access to specialist nursery provision, comprehensive educational support plans in place for them both, a weekly visit from a learning support teacher, fortnightly speech and language and physiotherapist and occupational therapists support. We had six monthly paediatrician clinics and referrals to any other services we needed.

After diagnosis everyone seemed keen to discharge us.

We were diagnosed and just dumped.

We are not alone.

The system seems to come to a crescendo after diagnosis then leave families hanging…alone, confused and vulnerable.

No wonder so many autism families feel let down and despondent.

We were build up and emotionally prepared for diagnosis only to be ignored afterwards.

Families need much more than a leaflet when their child is diagnosed and better ongoing support needs to be in place.

Only then can we perhaps stop this awful policy of diagnosis children and dumping them.

This article first appeared here

Raising A Child With Autism Who Has Too Much Empathy

 

 

 

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There is a commonly held belief in society that people with autism lack empathy. Every time I hear this statement I wonder if they have met my daughter.

I am raising a child diagnosed with autism who actually struggles with TOO MUCH EMPATHY.

Here is what it is like:

A few months ago I received a call from the office at my daughter’s school. Due to her autism my daughter struggles with huge anxiety and selective mutism. The school were calling to say my daughter was very upset but they could not work out why. I went down to the school expecting her to have been injured or perhaps bullied. Neither of these were true. My daughter was highly distressed in school because she had witnessed her friend fall over in the playground and cut herself. Long after her friend had had her wound cleaned up, dressed and returned to the classroom, my little girl was still crying for her friend. She later told me she felt as if her own leg had been cut and worried that her friend may have still been in pain. She took on another persons pain and tried to carry that for them. That is the deepest sort of empathy you can ever get.

Prior to this a few weeks before she had walked home from school with me very quietly and deep in thought. She looked like a child who had been in trouble at school that day and who was carrying the burden of guilt. Since she is a child who would never once consider breaking any rules I was naturally worried why she was so downcast. She spent the entire night withdrawn until at bedtime she broke down in tears in my arms. Another child had been moved down the behaviour chart to red that day and her tender heart was utterly broken for them. She truly felt every emotion you would have expected had it been herself it had happened to. She was disappointed, angry, upset and confused. She had this huge amount of stress on her shoulders that didn’t even belong to her yet she had no means of taking any of it away. Despite the crime not being her doing she was determined to punish herself for the wrong doing of another person. As admirable and self sacrificing as that is it is so unhealthy for any 8 year old to bear.

My daughter with autism takes everything to heart. She feels the pain of others like it has been done directly to herself. If someone shouts at anyone and she hears it she feels that voice piecing her fragile self worth like they were shouting directly at her. She takes on blame that is not hers. If I have her at the doctors and someone sneezes she feels responsible and begs me to make them better.

It is harder to live with a child who has too much empathy than not enough. Why? Because you can teach a child to understand the pain of others but it is so much harder to teach them to let the pain of others go when it does not belong to them. You can teach children to care but how do you teach them to stop caring when they care too much?

Having an over empathetic child on the autism spectrum means living with a perfectionist. You see she not only needs to be perfect for herself to prevent disapproval from others but she also feels she has to be perfect for everyone else too so that everyone around her is happy, safe and well.

img_0043The consequences of that are mental health issues, low self esteem and a vulnerability that worries me as a parent so much.

It is vitally important that professionals understand this in order to help my daughter and others like her. Over empathy is so misunderstood and ignored but is is real and it is very concerning.

Everyone who meets my daughter comments on her caring and loving nature. As a parent I am so proud of her and amazed at her incredible innate natural ability to reach out and empathise with others but I also worry she takes this to a level that is very unhealthy.

Could you imagine a nurse who feels the pain of every patient she treats? Or a teacher who breaks down every time a child in her class gets something wrong? Or a check out assistant who feels such empathy for every customer they want to pay for everything themselves?

My child’s future depends on professionals and myself helping her. With so much emphasis on the fact people with autism LACK empathy rather than having TOO MUCH empathy sadly I have a battle on my hands for support.

I thought raising a daughter with autism would be difficult but I had no idea how hard it would be to raise a daughter with autism who also struggles with too much empathy.

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