I Don’t Want To Be An Autism Parent Anymore


The day started far too early. There was no sweet cuddles in bed or a little voice asking for a drink; no I was woken as usual by screaming. I have had day after day, month after month, year after year of being woken by screaming and I don’t want that anymore. 

I don’t want to wake up to a smell that would make you want to vomit and bedding that is fit for the bin more than the washing machine, because yet again it is covered in something that ought not to be seen by anyone else. I am so tired of that now. 

I don’t want to sit on my couch in the middle of the night looking at my child and wondering what I did to have a child who sees no point in sleeping, who at 8 still can’t say ‘mama’ and who still thinks the world revolves around his needs only. 

I love him more than words could ever convey but I don’t want to be an autism mum anymore. 

I want to be a mum who has fun with her child rather than doing therapy with them. 

I want to walk my son to school and talk to his friends instead of sending him in a taxi to a place where I am a stranger to them. 

I want to be able to talk to my child about the fact it is his birthday soon and discuss what he would like to do to mark that day. 

I want to be someone who takes my child to bowling, teaches them to ride a bike or even goes to the movies with them. Instead the only place I ever take him to is hospitals or respite. 

I am tired of missing out on everything. I am tired of never having party invites, knowing nothing about his day at school, having to still dress him, having to take adult nappies and wipes with me wherever I go. 

I don’t want to be an autism parent anymore.  

I am tired of holding my child as he screams in public again. 

I am tired of the never ending judgement, the stares and the horrid comments.

I am am tired of carrying around my broken heart as a result of the interventions and therapies having achieved nothing. 

I simply can not bear the thought of my child as an adult knowing what society is like. 

I am tired of meetings. 

I am tired of phone calls from his school. 

I am tired of fighting for everything but then being accused as having an attitude or people thinking I act like I am entitled. 

I don’t want my child to have autism anymore. This is not a ‘different way of seeing the world’ that he has, or ‘a wonderful gift’. This is a child about to be 9 years old who can not say ‘mum’ or use a bathroom himself. This is a child almost my height who still can’t put his own clothes on, brush his own teeth or dry himself after a bath. This is a child who can never ever be left alone, who has to have everything the same all the time, who self harms and wanders. This is a child still with the mind of a toddler who will require others to look after him his entire life. 

Who would want that for their child? 

Who would want that as a parent? 

Today I don’t want to be an autism parent any more. 

The problem is I have no choice. 

So I strip that bed, bath that child, cook him that breakfast as I always do and let him sit on my knee while he rewinds the same ten seconds of video on you tube he did yesterday and the day before that and the day before that. 

Nothing changes much in my house, except my feelings. 

Today I am tired. I don’t want to be an autism parent today the same way any other parent may feel about not wanting to be the mum of a toddler who tantrums daily or a baby who has reflux or the partner to someone with Alzheimer’s. We all have days when we are just down about the life we have. 

Yet we carry on. We dust ourselves down, search for some positives or listen to some music. 

Tomorrow is a new day. It will probably start off with screaming again too., but maybe tomorrow I will be stronger, more hopeful, more upbeat. 

Maybe tomorrow I will want to be the autism parent I need to be. 

Maybe tomorrow. 

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Professional Speak Translated For The New Autism Parent 


Picture this: you have some concerns about your child’s development. Perhaps he or she is not speaking much, not giving eye contact, ignoring or over familiar with others or has some behaviours that seem a little repetitive. You decide to seek some professional advice. 

You have now entered the world of ‘professional speak’ where all sorts of professionals will say thing to you that actually have a meaning you may never realise. 
For those just starting out on the autism journey here are some things you may hear a therapist or a doctor say about your child with autism and here is what they might really mean. 

  •  “Let’s see how he goes shall we.” 

What that really means is we reckon you are exaggerating a few things and all will be fine. 

Remember: if your child has autism they will not grow out of it so don’t let this put you off!

  • Shall we discuss this another day?”

Which really means they are hoping to avoid the issue and hope you don’t notice.

Remember: take notes and remind them at your next visit you have something that needs discussing!

  • He/she is very complex.”

Which means that they really are not sure what to do with your child and hoping someone else will take over. 

Remember: if a doctor or therapist says this make sure they are working alongside everyone else dealing with your child so that this is not used as a cop-out. 

  • I’ll see you back in clinic in six months time.”

That translates to they have ticked the box to say they have seen you and they hope whatever the issues were that they will have disappeared by time you get seen again.

Remember: make a note somewhere on when you were seen and start chasing the next appointment in a few months time. Write down your concerns and make sure you are being heard.

  •  “What do you want us to do for you?”

This means they are trying to manage and limit your expectations from day 1 and they are also checking IF they can actually help at all. 

Remember: not every service is right for your child but if you feel a service CAN help push them to do so. Sadly they are often under pressure not to take every case on that is referred. 

  • The next step is for you to attend this course before I can do anything else.

Invariably that will be some sort of parenting course. Sadly it is still endemic to blame the parents before any real issues with the child are even looked at. 

Remember: it is not mandatory to attend any parenting course but often doing them can help and it also shows professionals you are engaging with them. As annoying and insulting as they are at least you can prove you are not to blame. 

  • I was speaking to my colleague about this.”

What this means is they feel they are out of their depth and may be looking to blame a colleague for some new idea or treatment rather than taking responsibility themselves.

Remember: this is YOUR child and if you feel uncomfortable with any professional talking to anyone, be that colleagues or other agencies, then make sure they know! Data protection means you have a right to privacy and confidentiality at all times. 

  • “I was planning to do such and such a test and speak to so and so in due course and get back to you at a later date.”

What this really means is they are delaying diagnosis in the hope at least one other person will state they have not seen signs in your child.

Remember: While basic tests like eye tests and hearing tests are useful and gathering information is wisdom, you can not be left indefinitely in limbo land for too long. It is important if your child does have autism that they get diagnosed and helped as soon as possible. Insist on calling back in a months time to ensure you are not being forgotten. 

  • Have you tried….(fill in the blanks with anything from hypnotherapy, hydrotherapy, ABA, a certain support group in the area, melatonin for sleep and so on)?”

This really means they are hoping you will say ‘ah yes we did this and such a thing is now no longer an issue’ so that they can discharge you. 

Remember: just because something works for others does not mean it will work for your child too. There is no harm is trying a change of diet (providing not harmful) or different forms of therapy, but there is no one size fits all in life and your child may need something totally different. 

  • That’s just all part of autism.”

Ridiculously some professionals seem to think once your child has autism that every other niggle or health concern they have is therefore related even if that is a rash, a headache or as crazy as tooth ache!

Remember: while autism is a complex neurological and developmental condition your child still has a right to treatment for bowel issues, pain and any other medical issues. Do not be fobbed off with the autism card! 

  • You look like you could do with some respite!


This translates as you could really do with brushing your hair and the matchsticks holding your eyes open are rather obvious today.

Remember: if they truly think this make sure they do something about it! Insist they pass that comment on to the right people or explain the process of getting respite!
Finally I will end with this one because of all the comments professionals give me this one angers me the most: ‘

  • We find working with the teachers is a better use of our time that working directly with your child.

Really? What that means is they place way more value on a teacher (who does not have autism) than they do on your child who desperately needs help! 

Remember: while few of us actually enjoy challenging professionals we have to fight for our children. Do not allow system failures to fail your child. 
Whatever therapists and doctors tell you always remember you are the parent. You were the one to raise concerns and you are the one who knows your child best. Make sure everyone is working with you and for you. 
Also note you will sometimes hear those wonderful words we all love so much: ‘

  • “I believe you!”

I hope more of us hear that one than the others! 

Why I will no longer say I hate summer holidays…even though I do!


My husband and I were having cross words again. Extreme lack of sleep, hardly getting time to eat and a house that looks like a toy shop was burgled, added to constantly demanding children and it was no wonder we were fractious.

 
Summer holidays are so hard.

In fact part of me actually hates them. 

We need a break”

“I just want the house to be clean and some time alone!”

“I hate the summer holidays”

 
They heard us.

 
I just unwittingly and unfortunately stabbed my child in the heart with my words. 

 
Silence.

 
We made ourselves a coffee and regrouped. Stress affects everyone and this summer has been particular stressful for my family. My autistic son has really struggled to adapt to change but once he realised there was no school he assumed every single day would be simply about what he wanted. When that does not happen he screams for hours (he has complex needs and is non verbal so none of this is his fault)

 
I made the kids (yet another) snack and we all calmed down.

 
Then a little tender voice broke the silence:

 
Mum, it’s ok. I will go back to school and just stay there. Please don’t collect me at home time because I want you to be happy”

 
And then she cried. Deep sadness overtook her and I held her as the pain of my earlier careless words wrecked havoc in her mind and her heart.

 
I do hate the school holidays. I hate them even more now.

 
Parents, like all adults, need to be able to express their emotions. They get stressed and tired and we really are just humans at the end of the day.

 
But I don’t hate my children. In fact I love them and enjoy being with them more than anything else. 

 
What I hate about the holidays is this:
I hate that holiday companies are allowed to ridiculously inflate their prices in school holidays preventing so many from getting away.

I hate that family attractions cost so much that they are out of reach for many.

I hate that everyday tasks like shopping are so much more stressful because children want to do fun things and get bored at everyday mundanity.

I hate that my children see parts of me they shouldn’t because the constant 24/7 means I can’t rest or eat without them.

I hate how isolated and alone my family becomes due to having a child with complex needs.

 
But despite all this I will never ever say again in front of my child that I hate the summer holidays.

 
She does not need to hear this.

Her mental health is of far greater value than my need to vent. 

 
Children hear us. What are they hearing when we say we hate summer holidays? They are hearing we hate spending time with them. They hear they are not wanted and they are an inconvenience to mum and dad. They hear that they are the cause of stress. They hear that they are making their parents sad. They hear we hate them.

 
So from today onwards I may vent in adult only places such as social media, I may text privately a friend to moan, I may even write my stress down BUT I will no longer utter those words again when my child can hear.
I love her way too much for that.

 
She is the reason I will never say again publicly that I hate summer holidays, even though I do. 

 
Something to think about perhaps?

Four things my severely autistic son has taught me


Having a baby is the most wonderful, humbling, exhausting experience I have ever known. I thought it would be a challenge but I would learn and gain so much.

 
Then one day my baby was diagnosed with severe autism.

 
Everything I had ever known about parenting suddenly changed.

 
I went from being the teacher to becoming the student and despite my son having no ability to speak he has taught me more than any speaker, any book or any course every could.

 
Here are five things my severely autistic son has taught me about life:

 
1. If you enjoy something, repeat it! 
All too often in life we are told to ‘move on’ or ‘grow up’ or ‘you are too young for that!’ My son has no concept of age appropriateness nor is he affected in any way by peer pressure. He enjoys a ride on a train to the same station to see the same elevators over and over again. He watches the same videos on you tube over and over. He presses the same button of the same toy repeatedly and still laughs.

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Isaac has taught me that if something fills your heart with joy never be ashamed to relive that. Life is to be enjoyed over and over and over again. I need to go back to finding joy, just like him, in the simplicity of life over and over again.

 

 

2. Stop worrying about other people!
Isaac has no awareness of others. He is not afraid to get on a roundabout even if a group of older children are in his way. He is not afraid to flap, spin, laugh and clap even if others don’t join him. Bullying goes right over his head. Comments from others don’t affect him. He could not care what he is wearing, where others are going or wether he is included or not. He does not aspire to be politically correct nor does he want to lead the crowd. Instead he is blissfully content being who he is, exactly how he wants to be.

 

I want to be more like that.

 

Life is not about doing what everyone else is or pleasing others. He is different, and happy to be so, and there is a lesson there for all of us.

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3. There is other ways to communicate without using words.
I talk far too much. Most of us do. Isaac can not talk at all so he relies on other, much more basic ways to communicate. He sits beside me if he wants a hug, he screams if he is unhappy or scared, he takes my hand to lead me, he finds photographs of things he wants.

 

To most his communication is too basic, too rudimentary, to learn anything from. They are wrong. Speech is not a ‘higher’ level of communication but rather a way to communicate that is actually too easily misunderstood. We can say we are happy yet our body language says otherwise. We can say we love when we actually don’t. My son simply shows me in beautiful and simple ways. They say actions speak louder than words and perhaps we all rely way too much on spoken and written language when a simple hug or smile would convey much more?

 
4. Don’t worry about the future, just enjoy today!
Isaac has no concept of ‘future’. He lives in the here and now and at 8 is just about coping with the basic idea of ‘first and then’. He has no worry about politics, or religion or current affairs. He has no concerto of wars, shootings or terrorism.

 

He lives in the moment.

 

He eats food and enjoys every item with no consideration for cost or sell by dates. He is as content to eat an out of shape vegetable from a low cost supermarket as he is eating out in an expensive restaurant. As long as he gets to eat he does not care! He never stresses about money or where it will come from neither does he desire anything of any real value. He will play with a coat hanger flapping it for hours without any idea that most would view it as trash. While we may not be quite as able to ‘live for the moment’ as he is we certainly could learn from his care free lifestyle and worry much more about today than the future. First today, then tomorrow could be a motto for us all.

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Isaac will most likely never read, or write or live on his own. Does he care? Not an ounce. He has zero idea about toilet training and he is not in any way worried what anyone thinks about that. He wakes up every morning happy. He laughs at the same you tube clip that he laughed at yesterday, and the day before, and the day before that too! He drags me to the cupboard for food and is neither brand aware nor cost aware.

Life is simple. Life is fun. Life is about today. He dances to his own beat and I am proud of him.

 

He brings me delight every day. He has so much to teach us.

 

He may be severely autistic and non verbal but the world is a better place for having him in it. 

 
People tell me he needs to be more like us. I disagree. We need to be much more like him. 

 

IMG_1466A version of this blog first appeared here

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.

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?