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.

IMG_0591
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.

IMG_0261

 

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. 

img_0095
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?

Three things that happen when your autistic child is different at home and at school

image

I am going through a very difficult time with my son. This morning he was carried to his taxi by my husband and myself kicking and screaming. He was stressed, his sister terrified and I was anxious and worried.
I haven’t called the school and asked if he is ok because I know what they will say.
He is not like that in school

Reports from school don’t marry with the child at home at all. In school he conforms, is settled and appears happy. At home he can be violent, unpredictable and highly distressed. This creates some problems for school, home and professionals. The great divide between home and school is a huge challenge and I am not alone in struggling with this.

When my autistic child is different in school it makes parents feel they are to blame.

When the common denominator for the challenging behaviour and meltdowns is home it is all too easy for professionals and schools to jump to the conclusion that bad parenting is to blame. We are accused of lack of discipline, lack of stability, lack of structure, feeding our children the wrong food and even not loving them enough! Just because a child has the ability to ‘hold it together’ in a very controlled environment all day and releases the lid on their frustrations, stressed and anxieties at home does not mean home life is awful. In fact the opposite is true! If a child did not feel secure, loved and safe they would continue to ‘hold it together’ at home for fear of releasing their true feelings.
Instead of blaming parents, schools and professionals should be more understanding of the difference between home and school and more willing to listen when their ‘perfect’ child is presenting totally different outside the school gates.

When my autistic child is different in school it makes accessing support very challenging.

So many parents know their child needs support from CAMHS or social work or speech and language but continually get denied these services due to presentation within a school setting. It is frustrating and damaging for so many children who put on a front within the classroom but who inside are screaming out for help. The system is loaded too much to the side of education where if referrals are put in from schools these are readily accepted yet a parent refers to the same service and the referral is often refused. There is still a huge assumption in the system that if a child truly had problems these would manifest in all settings the same. So parents get left to pick up the pieces of broken children by themselves with little support and hundreds of vulnerable children fall through the system because they are ‘good’ in school.
Perhaps if schools spoke to children or were more aware of stresses within the classroom environment for children with autism like noise, lights and the stress of conforming all day they may be more willing to support referrals for children who seem like Jekyll and Hyde.

When my autistic child is different in school it appears I am lying.

I have been at the meeting when all eyes are on me and I know they think I am lying, or at best exaggerating. I should never have to do it but I have resorted to videos and photographs of my child at times to prove that what I say actually happened. Would staff at school have to do this if the opposite was true and he was angelic at home but violent in school? Everyone at the meeting would be jumping in to support the teacher or school support staff if they were scratched or bitten or pushed by my son but as his mother it is seen as outrageous that I accept this behaviour at home. When I mention strategies we have put in place to help support my child at home and how these are not working some days they once again assume I am lying. It makes parents feel so alone, so belittled and unworthy. We already feel like a failure and those feeling are just made worse when schools give more and more examples of wonderful behaviour at school in answer to every incident at home that is mentioned. He punched his sister at home but shared his pencils with another child in school the same afternoon! He had a complete meltdown over homework yet got full marks in his spelling test the same day! It can be the same child and the sooner professionals and schools understand this the better for everyone. Have they never been professional and polite to someone in their job only to go home and let off steam by moaning at their husband or shouting at a driver who cuts them up?

I know what it is like to see my child happy, flappy and a delight to be with. I also know how hard it is for him and myself to see him so distressed he can not control what he is doing. Like thousands of other autism parents I experience the great divide, the Jekyll and Hyde of autism, on a daily basis.

Put me into different environments like an interview, a prison, a party or a holiday and you will see me change to suit my environment. My child with autism is no different.

I need people to see this and understand.

My son has the type of autism that is not a hidden disability

image

My son was running away from me in the supermarket yet again. I had held him tight as we went through the checkout but let go of him for a second or two to pick up my bags. That was all it took. As I chased after him towards the automatic front doors and into a very busy car park I noticed a stranger was gently holding his shoulder.

“Is he yours?” she asked as she saw the sweat appear on my forehead.

“Yes”, I puffed as I once again held his wrists.

“He has autism and he is heading right for the car park lift. Thanks for your support.”
“I knew right away he had autism. You can tell.”
If I was given just a small amount of money each time someone told me something similar I would be rich.
My son has the type of autism that is NOT a hidden disability.

So what makes his difficulties and diagnosis so obvious?
Is it the fact he flaps and stims CONSTANTLY? I really means constantly! He can not sit or stand still. He shakes things, chews things, flaps things, flicks things, squeezes things and licks things all the time. It is impossible to NOT notice it. His body movements are not hidden.
Is it the fact he can not talk? That may seem like something you would think would not be noticeable but to hear the noises he DOES make it is pretty clear to most people that these are not noises you hear everyday. His noises are not hidden.
Is it the fact he screams? He can scream longer than a fire alarm and more high pitched that a whistle. He screams randomly and inappropriately whenever he feels like it. There is nothing hidden about that in any way.
What about the fact he is still wearing nappies? As much as I try not to show this he thinks nothing of pulling up his top to chew or pulling at his trousers making it obvious. He has no social awareness and no understanding. Yes he could be incontinent for any number of reasons but combined with his noises and movements it adds to the number of reasons why people realise right away upon meeting him that he has autism.
He runs, he flaps, he obviously has learning difficulties, and he behaves quite differently to other children his age. He is sometimes in a wheelchair for his own safety and if I have not got the energy to run a marathon while doing my shopping then I often use a disabled trolley for convenience.
He would rather spend hours at hand dryers in the bathroom than anywhere else in a store, unless they have a lift. He is entertained for hours just watching lift doors open and close and open and close over and over again.
He is unmissable. He is loud. His tongue is more out of his mouth than it is in. He is handsome, cheeky and adorable. I don’t hide him and I don’t hide his autism. He doesn’t hide his diagnosis either. In fact he flaunts it.

People see him and people see his autism. 
Sometimes they don’t react very well to that. Other times, like the beautiful stranger today, they see a child with obvious difficulties and look out for him.
They comment, they look, and they react because my child has the type of autism that is NOT a hidden disability.
For many who are not as severe as my son I understand why autism can be a hidden disability. But it isn’t true that it is a hidden disability for everyone.

How did we get here?

As I sat holding my frightened 5 year old daughter in the back of an ambulance at 2:30 in the morning, for a split second, in the midst of fear and exhaustion, I wondered how exactly did we get here?

Here I was giving details of my daughter calmly to a stranger in a green uniform when all my body craved was sleep. I would say adrenalin was taking over, but medically this is impossible as I live with a potentially life threatening condition which means my body does not produce stress hormones. Moments earlier I had been lying in my bed praying silent prayers. It seemed at that moment they were not to be answered.
Naomi had been struggling for the last 24 hours with nose bleeds. At the tender age of 5 she had experienced them before. But nothing on this scale. I had already been in to her 4 times since she had been put to bed. But they just kept restarting. It was getting scary, for her and for me, and for my husband. Dad was becoming frustrated that his baby girl was not able to let him help. So he let me deal with this one. But this one was never ending. And then she started vomiting up blood. Again and again. I have never been so terrified. So I called for an ambulance.

So that was how we ended up at accident and emergency in the middle of the night with one of my babies.

20140430-214038.jpg
As I look in the mirror at the scratches and bruises on my neck caused by my five year old non verbal son I once again wonder, how did we get here?

How did we get to the place where he punches us, kicks us, bites us, scratches us and throws things at us? When did it all start? When did I start dreading reading his home/school diary because his behaviour has become so challenging? Sometimes things just gradually creep up over time until you realise it has become overwhelming. One unpaid bill soon leads to another, one moment of shouting at your children soon becomes the norm, one day giving in to their food fads leads to constant demands for chocolate for breakfast. One day Isaac having one tantrum and finding it funny to kick something has lead to him repeating this behaviour often. One reaction from someone, negative or positive, has lead to challenging behaviours becoming a daily occurrence. One day having mashed potato for dinner leads to constant demands for the same food to be repeated. Then one day we had no mashed potato left.

So that was how I ended up with bruises and scratches on my neck from my five year old autistic son.

20140430-215045.jpg

20140430-215053.jpg
As I find myself in yet another meeting with professionals discussing my daughters personal needs regarding going to the toilet I once again wonder to myself, how exactly did we get here?

With only 7 weeks left until she finishes nursery and only 4 months until she starts school, yet here we are talking with a group of professionals about strategies that might help her come out of nappies. Did I ever think I would have 5 year old children still wearing nappies day and night? No. Did I ever think I would need professional help to potty train a child? No. Did I expect both my children to have additional needs? Not at all. She seemed so perfect at birth. And later on I just thought she was slow to walk. In fact, I had very few concerns about my little princess until she started nursery school at 2 and a half. It was quite a shock to realise that my beautiful blue eyed girl had autism, and with it bowel and bladder issues, high anxiety and gross movement difficulties. It is funny how you soon adjust to talking about your child to professionals like it is a daily occurrence. In fact, for me, it pretty much is a daily occurrence now. You get used to the paperwork, and the forms and constant phone calls. You even refer to some people on first name terms like you have known them since school. You learn to ignore some of their ideas, you learn to adapt other suggestions and you know who to chase up for the missing paperwork. You learn the talk and the lingo and the laws you need to quote. And even though it breaks your heart, you learn to call and order nappies for your school aged child because you know you are still going to need them. You’re on to the fourth attempt at potty training now and you know it is going to be, like everything else, a long journey ahead.

So that is how I am still discussing pants and toilet cards and reward charts for potty training my 5 year old.

How did we get here? I still ask that every time we visit yet another hospital, or visit the dentist or eye clinic as we do every six weeks, or when we now add in the ENT referral for Naomi. If the NHS did reward cards like MacDonalds do for their hot drinks I would be high on caffeine by now. It feels like we have our own parking space at the clinics these days.

Life happens. Sometimes it can feel overwhelming. Sometimes it is relentless. Sometimes you just find yourself in a place you never dreamt you would be. But it is ok. If someone had told me I would have been in any of these places this week when I first gave birth to my beautiful twins in 2008 I would have struggled to believe you. It is a journey. We cope with today, look to the future, pray, hope and keep on going. One day soon I will be back on the mountaintop celebrating with my children in some new amazing thing they have achieved. And I will enjoy it all the more for having been through these valleys.

And you know what, even in the great times I will still wonder, how did we get here?

How? Because through it ALL God is there. That is how I got here and that is how I will get out of here too.

(Naomi lost a lot of blood but was released from hospital that night and is now recovering. We have strategies in place at home and school to deal with Isaac’s behaviour and there is some minor progress towards toilet training one of the twins)

Extremes of emotions on holiday

20140410-223026.jpg

20140410-223054.jpg

20140410-223104.jpg

We all experience emotions all the time. And children with autism are no different. But where we can usually calm ourselves down when angry, understand the need to slow ourselves down and end a game rather than becoming hyper or even soothe ourselves when sad, this is an area where people with autism can so often struggle. They find regulating emotions so difficult and can often swing from one extreme emotion to the other very quickly leaving everyone around them puzzled and confused.
This week I have seen this become an every day reality in my non verbal son. We have been on holiday this week in a caravan. No matter how hard we try, his routine has had to change. There is no school on holiday and at times this has been a massive challenge for him. He has used the iPad to show me pictures he has found of anything school related in an attempt to question why he isn’t going there. This is not helped at all by the fact the only thing he will ever let us dress him in is his beloved school uniform. He doesn’t ‘do’ holidays. He ‘does’ school. So even in a caravan 50 miles from home he has still been looking for his school taxi and pointing to any similar looking car we pass and screaming.
Every day has been like walking on a tightrope. He doesn’t ‘do’ wind down and chill. He does ‘get up and go’ from the second his eyes open to the second the melatonin finally kicks in and he drops off for a little sleep. And for a non verbal child he can be extremely demanding and loud.
Internet is limited where we are. And boy has he let us know how this has frustrated him. His favourite interests on the iPad are you tube videos of lift doors opening and closing over and over again, and google maps. And he has been most unimpressed that you tube and google do not work as he expects them to. You can’t explain terms like signal or coverage or wifi to him. All he knows is he presses the buttons and mum makes them work. So mum is at fault. And he then throws the iPad at me, scratches me, bites me, hits me and screams. Holiday? What holiday? Autism doesn’t take a holiday.
So you take him out and keep busy. But this isn’t the swimming pool he normally goes to. So you have to literally drag him screaming through the corridor to the changing rooms because he does not understand that other places can also be swimming pools. And he screams at the look of the different changing rooms. And I start to question if all this is worth it. The moaning, the screaming, the ‘challenging behaviour’ seems endless.
But then he gets in the water and immediately changes to the hyper, laughing, splashing, happy boy. Within seconds it was like someone switched my son. From one extreme emotion to the other just like that! And then getting out he switched right back, instantly his body got out that water.
The same with soft play. He loves soft play. But nope, this isn’t soft play to him. Because it isn’t one of the ones we normally go to back home. So you pay money to carry in a screaming five year old while everyone looks at you and quickly turns away. If only this child would wear his autism t-shirt at least now and again. But no, he has to wear his school uniform which just somehow makes it all look worse. It must look like I am manhandling a child on some school trip to the seaside. Who would believe we are actually on holiday trying to have some down time? But once in and he realises that this is a soft play, the tears stop, the flapping and chest beating starts again and he giggles like he is the happiest child you ever met. If only the scratches and pinches he gives me could vanish as quick as his tears!
Going anywhere in the car this week has seen him in default mode of whine. ‘Uh, uh, uh’ has been on constant play since the minute the car pulled up to the caravan park. It is a dull moan of wanting attention, of saying in his own way that things are not ‘right’ for him, of making it clear he isn’t happy. But the whining barely stops. So you would think this child was hating being in the caravan on holiday.
Yet one minute later he is out on the decking flapping, running up and down, laughing hysterically at a dog barking or cow mooing. Or waving his arms in complete ecstasy because he is being pushed in a swing. There is no in between just now.
So I feel like I am on that swing too. Except it never stops. We have the highs of laughter, hyper ness and flapping and chest beating followed immediately by screaming, moaning, scratching, kicking, pinching and throwing. We have the sheer innocent excitement of seeing the seaside followed immediately by the danger of him running straight out to the sea. Unless he is strapped in a car seat, buggy or swing there is no sitting down. There is no watching a dvd or looking at books, or colouring in like his twin sister. It’s just all about him. It’s all go. It’s exhausting and draining. For everyone of us.
In fact I need a holiday to recover from the holiday! Autism doesn’t take a holiday. It is extreme one way and extreme the other. Isaac can’t regulate his emotions. And right now I am struggling too. If you asked me how the holiday was going I would have to answer with ‘sometimes wonderfully, sometimes dreadfully.’ If only there was a happy medium. Now that really would be a holiday!

20140410-224025.jpg

20140410-223927.jpg

20140410-223147.jpg

20140410-223127.jpg