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

How do you respond when you hear your child has autism?

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How do you respond when you hear your child has autism?

We are all unique. It is what makes life interesting. Yet right from childhood we are expected to fit in and become the proverbial square peg in a square hole. We are programmed to react sad to bad news, excited and happy at good news and relief at hearing something is either not as bad as we thought or if it confirms what we have been expecting. As complex people we can even experience all that in just one go and often remain composed and professional on the outward appearance.

I have twice sat in rooms with various professionals and been told my child has autism.

How am I meant to respond?

Should I cry because my world has just turned my upside down; so many dreams I had for my child shattered as they have just been a life long diagnosis that could potentially limit them?
Should I sit in silence remaining composed while I am told all the deficits and difficulties my child has?
Should I look the person in the eye while they talk to me about their assessments that day and what other professionals have said about my child?
Or should I be relieved that my child just thinks a different way to others and count myself blessed he is just the same beautiful and loving child I brought in an hour before?

Am I wrong to keep my feeling to myself and keep the news confidential? What if I feel I want to share with immediate family only for support? Is it acceptable to update my social media with such news right away?

Should I ring a help line, search the Internet or immediate join a support group? Is there books I should real or pamphlets I take away with me?

What can I do about this? Should I be trying to change him or should I accept this? Should I be investigating private therapies or wait for further investigations or referrals?

What will this mean for my child’s education? Will this affect his health? Will he ever speak to me? What about the future?

While all this and so much more ran though my head on both occasions I heard myself thanking the person, shaking their hand and then finding my child to take them home.

I am never really sure if they expected me to cry. I wonder if they felt I was not hearing what they said. Maybe I even came across as uncaring or in denial? Would professionals have slated me for telling people, and even worse updating my social media that very day?

This week I heard more news on my children. Once again I found myself thanking the people concerned and shaking their hands. It seems the right thing to do. I have been programmed to be professional, not take up their time, and be dignified.

But we are all only human.

Never, ever let anyone tell you how you have to respond to that type of situations. It is ok to cry. It is ok to grieve. It is ok to retreat, tell the world and everything in-between. It is ok to feel trauma. It is ok to feel numb, or even relief.

Hearing your child has a life long condition with no cure is tough. Yes your child is still the most amazing, wonderful, beautiful child you took in to the clinic that day but things still change.

They change. You change.

However you respond when you hear your child has autism is the right way. There is no wrong way to respond. Even if you leave with a huge grin on your face dancing all the way home that is still ok. If it takes months of crying non-stop after the event that is also fine. You are all right. You are human.

In time how you feel changes. Then sometimes, like I had this week, you may have a co-morbid condition added on too. Then the whole emotional roller coaster can start all over again.

We are all unique. Your child is not a square peg but let me tell you something…you don’t have to be either. Be who you are. React how you react.

How do you respond when you hear your child has autism? There is no wrong way.

The effect on me…

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Having children affects everyone. You become less focussed on yourself and more focussed on another. You sleep less, go out a lot less and consider it a great achievement to get a shower without interruption. But as time passes the children slowly become more independent and confident and you little by little gain more of yourself back again.

Well that is how it works when you have typical developing children anyway. But what if that very needy, all-consuming, up through the night, needing a huge amount of time stage never ends?

It is well documented that parents of very young children are vulnerable and prone to depression, mental illness, and can easily become socially isolated. Health professionals are trained to look out for this and regularly check for signs that all is not well as research has shown that sleep deprivation and coping with the high demands of a baby or young child take a huge toll on parents.

But it is expected that season will pass as the child grows.

But for some, like myself, that season just keeps going on. And not because I went on to have another child either. It is because almost seven years after having my babies I still face the high demands, the daily intimate care needs, the lack of sleep and the stress of milestones not being met. My children have disabilities and the pressure parents of very young babies face is still very much the same as what I face daily. I still change nappies, I wash my children and dress them, I am still singing nursery rhymes and trying to teach one to say ‘mama’ or ‘dada’, I am still cutting food up and putting socks on that have been pulled off.

And that long-term intensity has to have an effect on me.image

It takes it’s toll mentally in that some days I could just sit and cry. The doctor could give me tablets but the pain and stress would still be there. Some days the effort to get dressed and get out the house just seems too much. Except unlike parents of babies who don’t have to leave the house and can go back to bed, my children have school to get to even if one of them still only functions at the level of a 1-year-old.

It takes it’s toll socially in that going out at night is impossible. Besides the fact I have huge caring responsibilities and am permanently exhausted, baby sitters are a rarity for families like mine. Who has the physical ability to carry a large six-year-old out of a bath and dry him and dress him? Who has the emotional strength to deal with a little one having a panic attack because her mum has left the house? Even if I did find that special someone I have no motivation to get dressed up and make myself presentable when my body just craves sleep.

It takes it’s toll physically. The lifting and carrying of a baby can make a mum’s arms ache but when the ‘baby’ is two thirds of your height and a quarter of your weight how do you manage? Seeing to personal needs of a toddler who decides to crawl away is a challenge. Seeing to the personal needs of a child who can bite, punch, kick and climb is an altogether harder challenge. When they are long past the age of using a baby change in public and you have to find a way to meet those needs in public toilets not build for that purpose your body aches and bends in ways you never thought possible.

It takes it’s toll financially. Babies cost. I often hear parents complaining at the cost of essential items like prams, car seats, cots and nappies. Second hand is sometimes an option though. But not when you enter the ‘special needs’ market and you have to look for elastic waisted soft trousers for a child who can not dress himself yet aged 6. Or you have to think about paying for private therapies not available on the NHS. Then there is the cost of hospital trips, the fact the schools are miles away from home and special needs sensory toys come at a huge cost. And I still have to buy wipes, and bedding and nappies and other ‘baby’ items six years on.

It just all takes it’s toll on me.

The days of people ‘popping by’ to see if I am ok has long passed. The excitement of coming to see those new babies has long gone. The phone calls from friends to hear how the babies are stopped many years ago. Yet the reality of my life never changed much.

Yes, my children have changed me for the better, but full-time caring for a disabled child takes it’s toll.

Please, if you know someone who has a child with any sort of disability, think about and do what you can to help the child. But have a think what you could do to help mum or dad too. Believe me they need support more than you may ever realise.

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We came to an understanding…

I had plans for this summer. My son also had plans. The difficulty was our plans were very different.

Isaac is six. He has autism and global delay. He has neurofibromatosis. He also has huge sensory issues, rigid thinking and a massive love of lifts and hand dryers. He has no spoken language.

So when school finished for seven and a half weeks his plans involved food (mostly mashed potato and gravy), lifts, hand dryers, food, hand dryers and more lifts…and maybe the occasional ride on a train.

I, on the other hand, wanted day trips, parks, picnics, garden play, road trips, time seeing family and shared adventures with him and his twin sister.

Someone had to give….

We came to an understanding and it went a bit like this:
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I took him to a park…and then we went to a local supermarket where he could see the hand dryers.

I got what I wanted. He got what he wanted.

We were both happy.

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I took him to soft play. He climbed about and even came back for a huge tight cuddle…which was his way of really saying ‘let’s go to the toilets now and see the wonderful hand dryers mum!’

So that is what we did.

He would play for a bit and then watch those dryers a bit more.

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I took him to pottery painting. He humoured me by putting on the apron (with support) and putting a tiny amount of paint on his model…and then he tore that apron right off and found the toilets to look for a hand dryer!

He has no problem communicating what he wants when it comes to his agenda…

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I took him took him on a train ride to a big city. His favourite place there was the lift at the train station! Nothing else mattered.

We traveled for an hour by train just to see a lift! But you have never seen a happier boy than Isaac was at that lift!

By now we were coming to an understanding.

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I decided to try to have a day without lifts or hand dryers…

I took him to the park again. This time all he wanted was the bushes at the side of the path! He felt them, watched them, heard them and even licked them. Well, what else did I think he would do at the play park?

This is life with Isaac. He had no idea others were staring at him.

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We had an invite to a family event at a local restaurant. Isaac made me so proud sitting at a large table and eating his meal (mostly using cutlery) and even having some pudding. But that was followed by an full 20 minutes in the toilets at the…well I think you probably know by now where he wanted to go to.

It wasn’t like I was hoping to speak to those relatives anyway…

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A charity invited us for a day trip to the safari park. Isaac showed not one second of interest in any animal. In fact he never even glanced at them.

But when he saw a sign for toilets he smiled, ran, and flapped with excitement.

I don’t expect he will go into veterinary care when he is older…

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I took him and his sister on a steam train ride. He did enjoy looking out the window at the passing scenery and he did enjoy eating in the cafe. But if he could talk I am pretty sure his highlight would have been that the toilets had his favourite hand dryers in…the ones with buttons to press.

It is what it is. He sees the world in a very different way. And sometimes just having him with me is a bonus.

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By the end I just decided to run with it. I only had to look at the excitement in his eyes and the happiness on his face to know that lifts and hand dryers are the most important things in his life. And if I want to get anything achieved these are the motivating factors to use.

I still would have preferred to have spent summer building sand castles, eating ice-cream, visiting castles and museums and time together as a family building memories. Hand dryers are loud, functional things that I would use only to…well dry my hands really! Lifts are convenient and quick ways to change levels…and that is when my interest ends.

But love takes you to places and has you do things in life you don’t expect.

And so I have spent an insubordinate amount of time this summer listening to hand dryers and watching lifts. And in his own way we have had fun. I had my day trips, parks, picnics and quality time with my son. And he had his fixations.

Life is about compromise. Love is amount accepting someone,however different to you they are, and not always wanting to change them. Making things work is about coming to an understanding.

I have had a lovely summer. Isaac has had a magical time. We just spent our quality time in places I never really imagined.

Even his twin sister seems to have come to an understanding…image

To the woman on the helpline

I called you today in desperation.

Yes, I am stressed and sadly you got to witness that in all it’s glory. Thankfully we will (hopefully) never meet. I ended today’s conversation in tears and there was so much I didn’t get to explain. The fact I even got to speak to you when both my children were in the same room as me is pretty amazing in itself. You probably think I am crazy so I hope this shows I am maybe not as crazy as you first thought. If I came across as emotional, stubborn, even perhaps agitated, I hope this letter makes you realise it wasn’t you I was getting at. I am just a mummy desperate to help my baby and today that happened to involve you.

I honestly don’t make a habit of calling helplines and crying for assistance. Sometimes I just don’t know how else to make my child better.

You see when I called you this was what my six-year-old was doing:

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She is sick. Again. For four weeks now she has had a cough that just won’t budge. She is already underweight. The doctors say she has a chest infection and the day before I called she was given her second dose of antibiotics in just two weeks. No mum can bear to see their child unwell. It is like a stab to their own heart and they would do ANYTHING in their power to get them better. The thing is to get better my daughter needs to eat and drink. Unfortunately this is a real challenge at the best of times and a hundred times worse when she is sick.

She has a very limited diet. She always has done. The only two things she has drunk since coming off breast milk is cows milk and a certain brand of orange squash that happens to be made by the company who employs you.

The doctor said milk would make her condition worse. So that only left the juice. I went to make her some and realised we had just run out. Her dad popped to the shops for some. He couldn’t find any. So he drove to another shop. Same problem. We just could not understand why this was, so he tried a few more shops. Still no sign of the juice. I tried tempting my daughter with so many other drinks. She would not take anything and was crying for her favourite orange drink.

When Naomi gets something in her head nothing but nothing will shift it. She smells everything to make sure it is right before it passes her lips. She examines what it looks like and often feels the temperature and texture too. She has sensory difficulties which affect her eating. She has rigid thinking which means she likes things as they always are. She struggles with change. She needs routine in order to feel safe. She has a condition called autism. She wanted her juice and would dehydrate rather than drink anything else. My heart was breaking for her so I thought I would just call and ask if you knew where I could purchase some of her juice.

I wasn’t intending crying on you, honestly.

Then you told me the worse thing you possible could ever say. And that is why I cried.

You told me you had stopped making her juice and you had no plans to make it again. Just like that you broke my daughters heart. And that broke my heart.

In the six and half years of living with my children’s autism I have rarely been so desperate. I remember pleading with you to help me. I remember saying she has autism and yet you said there was nothing you could do. I had to hang up I was so upset.

Your company now see me as a pest. I have written on your social media sites about my daughter and created a storm you don’t like. Kind people from throughout the UK have been looking out for the juice, buying, posting, bringing it to my house and giving me online links to buy it. There is a massive autism community out there and we stick together.

Today it was my daughter and your company. Tomorrow it could be another child and another company.

It is not my daughter being stubborn or obnoxious refusing to drink anything else. This is autism. It affects children and adults. Change has to be gradual, supported and is a process, sometimes taking years. It can not be done when someone is unwell. Sometimes, despite everything we try, change still never happens until the person is ready.

You shook my little girls world. You devastated mine. I do understand you were simply the messenger, the call handler, the employee. So I am sorry you witnessed this mamma breaking down.

My world is fragile. My daughter is fragile. I just never realised quite how fragile we both were until I called you.

Thank you for understanding,

One stressed and emotional mum.

P.S. Naomi is now much better thanks to us getting some juice eventually. We took her to a shop today but she refuses to walk down the drinks aisle because her juice isn’t there anymore. And she keeps repeating ‘why can daddy not buy my juice?’.
I just can’t answer that one.
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With us, but not with us

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Maybe the thought of new year made us brave. Maybe we didn’t want to offend the person who had bestowed a costly gift on us. Maybe the thought of getting out the house after a fortnight of the children being off school was just too enticing. Whatever it was that prompted us to take two six-year olds with autism to a Saturday afternoon pantomime in the middle of the city centre, we certainly must have been a little foolhardy. I packed a survival bag with all the essentials and climbed into the car.

Amazingly it wasn’t a disaster. Admittedly that was party due to iPad’s, doors in the bathrooms, hand dryers and taps in the bathrooms and an automatic front door, far more than it was to do with costumes, scripts and acting abilities. We lasted until part way through the second half. And as I told both my children just how proud I was of them for this major achievement it hit me:

They were both with me, but only one of them was actually ‘with’ me.

Only one of the children was even aware we went to a pantomime. The other had either played on his iPad, been enjoying the sensory excitement of the public bathrooms or exploring the mechanisms of the automatic door. To him it was just another building. He could not tell me (not that he can speak anyway) what the pantomime was about, any parts he liked or even what it was called. I am not sure he was even aware we were supposed to be watching anything.

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He just can’t seem to connect with our world at all. At least not in the way we want him to.

As both children prepare to go back to school in a few days time after having a fortnight holidays for Christmas and New Year, he is once again oblivious. We show him visuals and even a photo of his school. He won’t understand until his taxi comes up the driveway on Monday morning.

As usual I will print off some pictures of his time at home to share at news time with his class. But although he was with us throughout Christmas and New Year he wasn’t actually aware of any of it. After all he can’t even understand a day of the week let alone a year change. Christmas was just another day to him. Sometimes I wonder if I am sharing the photos with his school to prove to myself and them that we do things. Isaac would rather show them a video of him watching the lifts at a well-known high street shop. That, to him, was the highlight of his break from school.

Tomorrow I will once again take him to church. Church to him is a place with red seats that flap up and down, a place with fluorescent lights to follow at strange angles with your eyes, a place that you get a cake at the end. He can’t sing (but he does enjoy the music) and he has no idea of any of the Bible stories or concepts. He is in his own world.

He will be with me, but not with me.

He is now two-thirds of my height. Yet he still can’t utter a word. He still can’t use pictures to effectively communicate his wishes. And most of the time he is still trapped in his own little world. Taking him places is like taking someone from another country. He doesn’t understand the language, the culture, the things people do or any of the social nuances. So he copes whatever way he can.

I am getting used to his inability to talk and communicate. I can live with the fact he needs me to look after him like a young baby still. I accept he will need support for many years to come.

But one day it would be nice to get a connection with him.

One day it would be lovely to take him with us and actually have him with us in every sense of the word.

Until then you will find me at the doors in the public bathrooms. I will be with him, even if he isn’t with me.
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Does her anxiety look big in this?

image Last year, a week before her fifth birthday, my beautiful daughter was diagnosed with autism spectrum disorder. She understands the world very differently. She struggles with changes to routines, has sensory issues, has balance and co-ordination issues, loves repetition, and struggles a lot in social situation, but more than any of these she mostly struggles with severe anxiety. She is anxious every minute of the day, and even through the night.

But unlike physical difficulties which can be plain to see, anxiety is a silent, hidden disability.

Can you tell from her photo she struggles so much with anxiety?

It is well-known adults can have mental health issues. Most people will know someone who seems that bit more ‘stressed’ or anxious about things than others, or who seems very low in mood. There are even medications, both prescribed and off the shelf, for adults who struggle with anxiety, sleep disorders and depression. But what about a young child whose anxiety is just as crippling, whose fears are just as genuine, and who struggles daily with stress?

For so many children with autism this is daily life. The ‘traits’ of autism manifest even more when anxiety is increased. With my daughter that means she clings to me even more, struggles even more with sleep and lines up her toys even more than normal. She withdraws into herself more and her eating becomes even more restricted. She is snappy, uninterested in life and always exhausted. Just like if an adult had no appetite, stopped sleeping, withdrew and had a low mood a doctor, or loved one, would notice something was wrong. Thousands, if not millions, of parents are watching their children struggle with the same thing and there seems to be so little help available.

We are fortunate to already have a diagnosis. We already have a team of professionals involved. Yet when my precious baby girl became so anxious at the transition of starting school she began having severe panic attacks and nose bleeds no-one seemed to know how to help her. Advice was so conflicting from keeping her off school to insisting she went to learn to face her fears. Those who observed her in the school environment reported back that her anxiety was so obvious that she spends all day chewing her tongue. She may be in a mainstream school but I know in my heart it would not matter where she was educated she would still be on constant high anxiety.

So while others have left their infants by the gate from the second day of starting school and went home crying in pride, I had to wait fifteen weeks later before my little one felt ready to take that step alone. Until then I had to hold her hand right up until the moment the school bell rang and she was lined up with all the other children.

Now she is panicking about all the changes involved in the run up to Christmas. Will I remember to come to the play, will she know what to do when her anxiety overcomes her seeing so many people watching the nativity, why are they going to a pantomime instead of doing reading and number work in school, what if a child is off and she wants to give them a Christmas card, why are they having a party, will she have to go see Santa….and so on. Real worries, real fears and causing very real stress to a just turned six-year-old.

I can reassure her. I can prepare her. But I need to balance that by not feeding her fears and allowing them to become even stronger.

She can tell me some of her worries. Many other children with autism can’t.

In two weeks time we have our first meeting with the children’s mental health team. We only got referred because ENT have completed all their tests and concluded her severe nose bleeds have no medical basis and they believe they are directly related to her anxiety. Then her panic attacks were so severe she was struggling to breathe some days. That was back in August and we are only just getting seen in December.

There are days when I hear her laugh and play and read her books to me and I wonder if this can be the same child who becomes distraught if I leave the room to use the bathroom. But you don’t always have to be sad to be stressed. You don’t always have to be house bound to be anxious. And you don’t have to be an adult to struggle with mental health.

We need to recognise that so many children with autism are struggling with anxiety. And we need to have help to support them.

That starts by realising that even when we don’t see it, anxiety is still there: the silent, hidden disability.

Can you see it? Does her anxiety look big in these pictures?

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