What Happened When A Child Refused To Have My Autistic Daughter In Her Team


It’s two days before sports day at my daughter’s school and gym lessons are all about practicing for hurdles, sprinting and egg and spoon races. The children are excited, eager and raring to go…all except one child who finds any sport a challenge.

She is small, quiet, slow at running and finds balance and jumping difficult. She has fallen too often and takes longer to master even the most basic of physical skills Everyone in her class knows this but today it seems even more obvious.

The class is divided into teams to practice the skills. Although no mention of competing, timing or winning is even said the children somehow know this is practice for the big day when trophies and awards are given out. The teacher numbers the children and sends them to their respective areas.

And then it happens.

Miss can I swap groups?”

“Does she have to be in our team?”

“It’s not fair we always have her!”

“That’s it! I’m not taking part if she’s on my team!”
And at that one child walked off, refusing to take part in the lesson simply because my autistic daughter was on her team. 

My 8 year old won’t tell me how she felt about that but I can image. As her mum I want to cry. My daughter may struggle with social awareness at times but even she totally understood she was not welcome or wanted and she knew exactly why. 

She knows she is different from her peers. She knows her physical skills are delayed and that she often needs adult help to participate, yet every week she tries her best. But how much can one child take?
What would you do if you knew no-one in your class wanted you in their team? 

Naomi ignored them. She carried on as if nothing had happened while the other child sat and watched. She needed assistance at the hurdles and at anything related to using balls but then as the teams moved around activities the teacher noticed something very special.
When Naomi’s team came to sprinting they were a child short on her team. The child who finds running hard took it upon herself to not only run for herself but also on behalf of the very child who had refused to join in because she did not wish to be on a team with my autistic daughter! The teacher cheered her as she pushed herself to not only run twice for her team but also do several other tasks twice over because her team was a child down.

There was no race to win today. There were no prizes. The actual sports day is not for another two days yet. However, when I collected my daughter today her teacher called me back to speak to me.

She never told me about the child who refused to join in because my daughter was on her team. Instead she told me how proud she was of my 8 year old who excelled herself in the sports class today on so many levels.

It was my daughter who told me what happened with the other children and how one girl refused to join in because Naomi was on her team.
How silly was that mum! She thought she had no chance of winning because I am slower than others but you will never win anything unless you try.”

I don’t need to be upset about the fact my daughter was bullied today because she is different. I am not even angry the child was allowed to sit out just because she felt so aggrieved at having to do sports in the same team as a child who struggles.

My daughter proved today she is much greater at sports than anyone realised. She showed sportsmanship, team work and resilience beyond her years. What she lacks in physical ability she made up for in strength of character.

Too often we look down on others because they seem weaker or less able.

At bedtime tonight my daughter summed up her day like this:

“It was good mum! I tried my best and did extra when I could to help. That makes me a winner…right?”

Yes it does!

My child became a winner…that’s what happened the day a child in her class refused to have my autistic daughter in her team! 

Sometimes the hardest lessons in life show us what we are truly made of.

I hope the child who refused to join in today has learnt from my daughter. I know I have! 

The crisis of carers paid just £1.79 an hour.


I went to renew my car insurance recently only to discover my occupation is ‘unlisted’. I was forced to telephone them and ask what I should list myself as. They decided I was either ‘unemployed’ or ‘stay at home parent’. I am neither of these! I am a full time carer but no-one seems to know we even exist!

 
I gave up a managerial position to care for my disabled son. I have a degree education and had a good career in sales. I was a home owner, had a fairly new car and I was valued. Then I had a disabled child and now all I am deemed worthy of is an hourly rate of £1.79. In reality I get much much less than that!

 
I feel utterly disgusted at how unpaid carers are treated in this country. Are people aware that carers allowance is only given out to those caring for someone 35 hours a week or more and that it is a weekly amount of just £62.70? I wish I was only working 35 hours caring but assuming this was all I worked I would still only be paid a measly £1.79 an hour! Would you work for that amount?

 
Would you work permanent night shifts dealing with someone with challenging behaviour, who is completely incontinent and has night seizures, and still have to work 12 hour days as well? Would your union not have something to say about this? What about if you had no breaks and were often attacked at work? What about if you were denied any holidays or even time off for ill health? What if sick pay was non existent? What if all your employment rights were taken away from you?

 
When I became a full time carer it appears I lost all my human rights.

 

 

I have no union to protect me and no manager to put my case to. I went from being a someone to a no-one the second I became a carer.

 
I am considered nothing by society who view me as a ‘benefit scrounger’, ‘lazy’ or nothing more than ‘unemployed’. People scoff at my ‘profession’ like it is a joke.

 
Let me tell you my job is no joke!

 
I deal with life and death with a child who has severe complex needs. I make decisions on his welfare and health needs daily that should really be made by neurologists, doctors and oncologists. I co-ordinate his care without a secretary and attend meetings without back up. I sign forms as his ‘representative’ without legal support because no-one else is bothered what happens anyway.

 
If my son should die and I updated my CV employers would simply see me as having taken a ‘career break’ or ‘time out for family’ rather than viewing my current situation as a serious job. Why? Because caring has no prestige. It is seen as worthless, less than, of no value and not beneficial to any career. Even if I wished to use my experience to take up full-time employment in the care sector my current work is of no use as I have no reference or company or courses I have completed.

 
Even the NHS view me as simply the one who pushes the wheelchair or who hands his appointment card over. When my son reaches a certain age it will be expected he will attend appointments with me waiting outside despite the fact he is completely non verbal and unable to understand what is required of him. I will have to go through a host of hoops and bureaucracy to prove as his carer I even have a right to be with him, yet anyone can have an advocate or friend with them and they are fine?

 
I gave birth to a disabled child. I gave up my career to be his carer. Apparently that means my career has hit a brick wall and I have waved goodbye to my self respect and self worth. My job title no longer even appears on a drop down list and my hourly worth is now reduced to just £1.79 an hour.

 
This is the crisis of carers in Great Britain right now.

 

 

Does anyone realise this is going on? 


The difficulties that get overlooked when your autistic child is verbal


I am blessed with a daughter who has a large vocabulary and clear dictation. She can read fluently and make up complex sentences. She can remember accurate facts about things and repeat these readily. She can make choices, recall events and express her opinion.

As a result of all of the above it is assumed (wrongly) that her autism is mild, has limited impact on her life and something to be of little concern about.

People are too quick to assume if a child is verbal that everything is fine. 

Let me assure you that just because an autistic child can speak it does not mean their autism is mild.

Having speech does not mean a child necessarily understands what you are talking about.

Having speech does not mean there are no learning difficulties.

Being able to talk does not mean a child can effectively communicate.

Most of my autistic daughter’s speech is something called ‘complex echolalia’. She remembers sentences and phrases from things she has read or heard and uses them to allude people into thinking she is coping socially. This is a common coping mechanism in girls with autism. They become adept at hiding their difficulties by quoting from others be it from movies, books or friends. It took a highly skilled speech therapist to diagnose this in my child but once pointed out it was so obvious. When she was younger we could pick out phrases from Thomas Tank engine, or Peppa Pig or sentences from well read children’s books I would read to her at bedtime. Her vocabulary was not being used independently but more ‘cut and pasted’ from one situation to another. This is much more common with autism than people realise.

Your child may appear to be talking but is it spontaneous language or an echo of something they have heard many times before but do not actually understand?

People assume because my daughter can talk that she is socialising. ‘She chats to friends in the playground’ is a common phrase used by schools to assume a child with autism is socialising well. What in fact she is doing is listing every  ‘shopkin‘ she owns in alphabetic order or inappropriately telling another child they smell awful today! It is talking and it is to another child but it is not social reciprocal play and she is not making friends!

Many also assume because my child can speak that she can not possibly be anxious! That is a myth. Anxiety can manifest in so many ways and if asked a direct question my daughter will attempt to answer even if her anxiety is making her feel physically sick. Anxiety in verbal people with autism can actually make them say things that are considered rude or hurtful or even cause them to repeat the same phrase or question over and over. These are ‘coping mechanisms’ to help them cope with the extra stress of certain situations.

It is assumed because she is verbal that she understands emotional and intention. That is like saying because a baby can walk they can do ballet or play football! It is dangerous and worrying that even teachers assume because a child has the physical ability to speak that they are able to cognitively answer complex emotional questions like ‘why did Billy hit you? Or ‘how do you think I feel about you saying that?’ A verbal child with autism may still struggle with emotions and verbalising events that have happened. They still struggle with seeing things from other perspective or being able to break down facial expressions. We need to remember they still have autism even if they can speak and not make assumptions based solely on the fact we appear to understand what they tell us.

My daughter can speak but don’t expect her to tell you if she is in pain or where. Don’t expect her to understand metaphors or euphemisms or jokes. She can not grasp double meanings and understands language completely literally. ‘The sky looks heavy today’ to her means it is about to fall down! Don’t stop her half way through her lists or even her sentence as you interrupt her echolalia and therefore her brain’s ability to decipher the world around her.

I am eternally grateful she can speak. I have a son who is entirely non verbal at 8 and I know the pain of never hearing your child talk.

However, I also know the pain of seeing my child’s difficulties ignored just because she is verbal.

We must look at autistic children individually. We need to look past the words they speak and see beyond the sounds we are able to understand. Under the surface of speech lies so many other difficulties that require ongoing support. 

If you know someone with autism who can speak never make the assumption their autism must be mild. There is so much more to autism than just being able to talk. Words hide much more than we ever think. 

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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Please stop praying for my son with autism to be healed

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So many people have told me over the years they are praying for my son. I am incredible grateful for that and the kindness they show but what are they praying about?
Are they asking God for my 8 year old to finally speak? Are they asking for his seizures to stop? Are they praying he learns to communicate or to read and write? Or are they praying for him to be healed of his autism?

Let me be very clear..I want people to pray for my son. My entire family needs prayers and needs God more than we ever have. We need love and support. But please please could you not pray for my son with autism to be healed?

Here is why.

There are many occasions when Jesus healed individual people in the Bible. These include people who were blind, deaf, paralysed, had leprosy, fevers, seizures and even those who had died. Despite studying all of these incidences I could not find any occasions when Jesus prayed for anyone who had learning difficulties or communication difficulties like my son’s autism to be healed.

Then there were mass healing events that Jesus did. Again although many were healed there is no direct reference to children or adults who struggled socially or had repetitive behaviours like my son.

The Bible says that Jesus welcomed the little children. Although I have no proof I am certain there were children in Bible times who displayed similar difficulties to my child. I know they were every bit as welcome to Jesus.

The Bible says that my child is fearfully and wonderfully made. (Psalm 139:14).
The Bible says my son was knitted together in my womb (Psalm 139: 13)
The Bible says my son is created in God’s likeness (Ephesians 4:24)
The Bible says my son is the apple of God’s eye. (Psalm 17:8)
The Bible says my son is God’s workmanship created to do good works. (Ephesians 2:10)
The Bible says God has plans to prosper my son and not to harm him, to give him a hope and a future. (Jeremiah 29:11-13)

God sees no difference between my son and anyone else. He does not view my son as less than or inadequate in any way. Could God heal my son of his seizures and his genetic condition that causes tumours in his body? Yes, without a doubt. Could God open my son’s mouth to give him clear speech? Yes, I believe that with all my heart. Could God cause him to be more settled and display less challenging behaviour and agitation? Without a seconds doubt of course he could. These are things I pray over him daily.

IMG_0440I pray for peace for him. I pray for joy and laughter. I pray for people to understand him and show him love. I pray safety as he travels so far back and forth in country roads to school each day. I pray for a receptive mind and open heart. I pray strength to his body and ease from pain. I pray for him to sleep (I am human so this is something I need too).

I pray for strength for myself as I care for him. I pray for wisdom and unity for those who work with me to meet his needs. I pray for his sister as she deals and lives with some events that could traumatise her. I pray her tender heart is not broken too often. I pray for friends she can trust. I pray she knows she is loved when her brother consumes so much of my time.

There is so many things I pray for and so many things others can pray for too. There are things you CAN pray for for my son to be healed of, but autism is not one of them. Autism is a neurological difference in his mind that causes him to see the world a bit differently. Autism is a part of the way God made him and it makes him beautiful and perfect.

God made each one of us part of a body. My son is every bit as much a part of the body of Christ as the next person even if he has severe learning difficulties, is vision impaired, has global delay and has autism. It does not matter to God that he flaps, spins, screams and is unable to speak. Man looks at all that but as the Bible says “The LORD does not look at the things people look at. People look at the outward appearance, but the LORD looks at the heart.” I Samuel 16:7

I pray that the world looks at my son’s heart too.

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Could Your Child’s Lack Of Eye Contact Be More Than Just Autism?

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My son has autism spectrum disorder. That no doubt explains a lot about the picture of him above. Lack of eye contact is considered a classic sign of autism and it was indeed one of the first signs picked up in Isaac from a very young age.

What wasn’t picked up was the fact his lack of eye contact was much MORE than just autism and in fact was due to something much more worrying: as well as being autistic my son is also visually impaired.

His autism was diagnosed at age 3 and yet it took until age 8 for professionals to realise how poor his eyesight is.

This angers me as had he not been displaying other signs of autism such as communication difficulties, social challenges and repetitive behaviours, health professionals would have actually looked at his eyesight much earlier.

At age 4 he was diagnosed with the genetic condition neurofibromatosis type 1. It is widely known that this can lead to eye sight problems yet still no-one seemed to take my concerns about my sons eyes seriously.

img_0217At age 2 he would sit like this and look closely at a cushion for hours. I told his paediatrician, I told our family doctor, I told our health visitor…everyone told me it was ‘sensory’ and probably due to his autism. I foolishly believed them.

A few years later I recall taking a video of him in the garden. He was walking up and down the bushes in the garden feeling them as he walked repetitively back and forth in a straight line. I showed that video to so many people. I knew something wasn’t right but all everyone said is ‘that is autism’, or ‘that is sensory’. My non verbal child was feeling the bushes because he could not see yet no-one noticed. That is heartbreaking.

img_0282I needed answers. We began attending an eye clinic where they were more concerned about training him to look at cards and spent years putting drops in his eyes. The specialist struggled because my child would meltdown and cry at every appointment so they just kept asking us to come back. Finally at age 6 he was given glasses…only 18 months later to find they were the complete opposite prescription to what he needed!

At age 7, after a huge fight, Isaac had an MRI and we received some concrete answers.

His lack of eye contact, his looking at items closely, his feeling of everything…was not JUST his autism…he actually had three separate and serious eye conditions.

My son DOES have autism. He also has Microphthalmia (small eye) and persistent hyper-plastic primary vitreous (PHPV) leading to loss of sight on his right eye and his left eye has an optic glioma (tumour) on his optic nerve!

What is the point of me saying all this? I am NOT out for sympathy. That does not help my child in any way. What I want this post to do is to make people aware that when professionals say ‘that is just autism’ it may NOT be. When it comes to poor eye contact autism is one of the first things professionals look at. But is is NOT the only reason a child may have poor eye contact.

Be aware. It may not be easy to do but despite the challenges it is worth getting your child’s eyesight tested.

Your child’s lack of eye contact could well just be caused by autism but it is always best to know for definite.

I wish we had realised that sooner.

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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