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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Ten Seconds That Prove You Should Never Underestimate A Non-Verbal Autistic Child. 


People don’t expect much of my son. 

Speech and language therapists have all but given up on him, encouraging me to just accept he is non-verbal with limited understanding.

School take him on ‘environmental excursions’ rather than reading and writing because…well he can’t hold a pencil despite having been in school for four and a half years so he is never going to read and write is he?

The learning difficulties mental health team wrote to us explaining his challenging behaviour and long spells of screaming are just part of his complex diagnosis and are unlikely to change.

The public looks down on him in distaste.

Children his own age mock him in parks and soft plays when they see he can’t talk and is still wearing nappies.

Even as his mum I sometimes find myself wondering what the future holds.

It is easy to understand why. My son has a long list of diagnosis all of which are life-long conditions. He development is years and years behind what is ought to be and he requires support for all his personal care. He is a non-verbal severely autistic 8 year old who is still very much living in his own world. 

Well that is what I thought too. That is until I happened to turn my iPad video recorder on this evening while he was playing with his iPad. What I captured changed everything.

He had been handing me his iPad on and off for the last half hour. He was pressing the ‘google’ app wanting me to type things in to let him scroll though images. It was exhausting trying to guess what he wanted to look at with no eye contact, no words to tell you and no clues. In the end, frustrated myself, I handed him the tablet back and said ‘Isaac google something?’ I never for a minute even thought he would understand let alone google something so incredible it had me in tears:

He clicked on the search button and within seconds he pressed the ‘i’, quickly followed by ‘s’, then without hesitation he pressed the ‘a’ right beside it twice, before pausing for a few seconds then finishing his search with a ‘c’. In total it took less than 10 seconds for him to prove you should never underestimate anyone!

He just typed out his own name and I had no idea he even knew it let alone how to spell it!

The speech therapists may be right about him not speaking but he clearly understands far more than they realised.

School thought he would never be able to read and write…well he may not be able to hold a pencil cold but he just wrote his name using a keyboard on an iPad so who know what else he may be able to type?

The learning difficulties health team may be right about his behaviour being part of his comprehensive and complex diagnosis but what if so much of it is frustration at understanding but unable to communicate back?

Maybe this ten second video may help the public see that you can not judge anyone by lack of speech or lack of eye contact or lack of social skills. 

It only took my son ten seconds but in that ten seconds he has proved to so many that we must never, ever underestimate anyone, especially those with non verbal severe autism.

Does my son still have difficulties? Absolutely. Should I ‘not expect too much of him’? Never!

Behind the flapping, you tube on repeat, screaming exterior is a brain hard at work piecing things together in his own way in his own time. 
People don’t expect much of my son: I do. He just showed me why.

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

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

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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.

Is your other kid normal?

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‘Is your other kid normal?’

How would you feel if someone asked you that?

Before I let you know how I reacted to that I want to start by looking at the dictionary definition of ‘normal’.

According to The Oxford English Dictionary the word ‘normal’ means: conforming to a standard; usual, typical, or expected.

In other words this stranger was implying my son is not standard, or usual, or what was expected. He does not fit societies stereotypical idea of a seven year old. He is different. He is unique. To the stranger he stood out as exceptional and out of the ordinary.

Do you know how proud that makes me of my son?

I love that he is different. I love that he does things in his own way, at his own time and he has no concept of following the crowd. I delight in the ways he shows excitement by flapping, making high pitched noises and spinning. I smile when I watch him making his own delicacies like pizza with custard and yoghurt with mashed potato. I find it refreshing how he would rather watch lift doors than spend money on toys. I dance around with him in glee at watching yet another person use the hand dryers in the public bathrooms.

He is funny. He is loveable. He is energetic. He gets bored clothes shopping and thinks he knows better than me at times. Those are all ‘normal’ things that seven year old boys do!

He has brown hair, Hazel eyes and a love of technology. He is average height and weight for his age and even his shoe size is right on target!

So why would a stranger ask me if my other kid was normal?

She looked at my sons disability. She looked at the fact he is unable to speak. She looked at his poor balance, his different mannerisms and noises and she saw him as less, not conforming and not typical. Her question implied I should be sad for having such a unique child and craving a child without any such challenges. Maybe I should be sad I have to see to his every need at seven? Maybe I should be broken hearted he is not yet potty trained and not speaking?

I refuse to judge this stranger. Why? Well a part of me used to be there. My heart ached for the things my son could not do. My body ached pushing him around in a chair for all the years he could not walk. My ears would love to hear his voice.

Now I see my son differently. I see him as beautiful. I see him as wonderful.

He IS normal. His sister is normal too.

Normal according to the dictionary is conforming to a standard. If you see the standard as being human then there really is no such thing as not being normal.

So do you want to know how I replied?

I simply smiled and said softly ‘Yes. I am blessed with two amazing children. Thanks!’

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A moment of beauty at build-a-bear

Kids are so full of surprises! Just weeks after Christmas and the usual delude of new toys and games and what was my daughter wanting to play with? A teddy bear she has had for years! Now reincarnated with a new name and involved in all sorts of fresh imaginary play; I knew what was coming next…

Mum, I can’t find Ellie’s clothes?

Imagine my confusion! Who or what is Ellie? Followed by the panic of realising I not only have no idea where the once-buried-under-the-bed-in-a-box toy appeared from but how did she even remember it had clothes? And she seriously expects me to just pull out this last seen in 2013 teddies coat and boots? What? Goodness, this mamma can barely remember the day of the week let alone anything else! We dug in the we-have-no-idea-where-else-to-put-this-stuff box to no avail and alas I began to wonder if these ‘suddenly in demand’ items she can not live without now could have ‘accidentally’ jumped into my car boot in the pre-Christmas clear out. Oh what an awful parent I am! I shall pre-book my daughter to that counsellor she is sure to need when older!

And sometimes, for our own sanity, we make a promise we know our bank account will live to regret!

Ok, this weekend we shall take Elizabeth, Ellie, ..whoever, to the bear shop and buy her an outfit. Ok?

And breathe!

Well until today when that eager eyed baby woke and ran into my bed to announce today was the day her bear was getting new clothes! That’s it, NOTHING is ever getting thrown out again, you hear me!

So we excitedly (well reluctantly on my part!) got prepared to go. And this is when it gets complicated! As well as my way too attentive daughter I also have the honour of being mum to my son who has complex needs. How in the name of whoever am I going to get this boy of mine into build-a-bear? It’s not like you can buy a bear and get a free burger now? And the last time I checked they had no lift or hand dryer? So that’ll be a ‘no chance mum’ as per!

Flip! Could Elizabeth, Emily, sorry Ellie not become a naturist for a while until you find some other old toy? That look…well if you are a parent you know what I am referring to…it said it all!

So let’s just get this over with!

You are kidding me? Really?

My son, aged seven, who has never in his life touched a teddy, who has yet to speak, who has no idea about imaginative play…is standing over a basket of teddy ‘skins’ and has ‘chosen’ one he wants! STOP!

He is in the shop. He is not screaming. He has not wrecked the entire place.

Now THAT was worth coming!

Now how do I explain this ‘teddy’ needs stuffed by a loud, spinning machine full of white ‘stuff’? He doesn’t know what a teddy is? Or maybe he does?

Well he waited, and he ‘chose’ an outfit, unsurprisingly one that closely resembled his own beloved school uniform (he doesn’t care it was a skirt) and a red bag to match. Meanwhile I dreaded to imagine what his sister had seen! Have you seen the prices of these clothes? I pay less for my own clothes and I can assure you they are a whole lot bigger!

She settled on…the exact same uniform, a pair of pyjamas…and the added ‘accessory’ of…a wheelchair! She announced in front of the entire shop that her bear just wanted to be like her brother. And how do you argue with that?

Ok, mr build a bear, your prices are crazy, your appeal far too great, your choice better than the average high street shop for ‘real’ people, and I never want to visit for a good while until my bank account recovers…

But I have to admit, you gave me a moment of beauty today. I even hasten to say a miracle. The boy who has no teddies now has one. And he hasn’t let it go since! And you ‘normalised’ using a wheelchair for a child who sometimes struggles at how different her brother is.

So cheers! I owe you one!

P.s, a coffee shop to give me a moment to recover may not be a bad thing! I’ll leave that with you 🙂

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My Christmas miracles

imageI believe in miracles.

But the reality and daily grind of life can shatter that belief until it feels like miracles only happen to others. Then I witness a moment; a tiny fraction of time, and that belief is restored once again. Those moments often happen when we least expect it and in the normal everyday occurrences, so we need to be watching and waiting and believing. Sadly too often I am overwhelmed, exhausted and so busy I almost miss those moments of beauty right in front of my eyes.

This last week though I have noticed two miracles with my son. Nothing huge like starting to speak, or new physical skills like kicking a ball or jumping (stuff other seven year olds do without even thinking!) or even independence skills like showering himself.

No to most parents of seven year olds my miracles would seem trivial indeed; unmentionable, so run of the mill they would be taken for granted.

But one thing that happens when you parent a child with additional needs is that you learn NEVER to take anything for granted!

I had taken the children to a Christmas party. The fact we even got inside the door could be classed by some as a miracle. The fact my son was no longer wearing his red school jumper this year (he wore nothing but his school jumper for two years everyday) could easily be noted as a miracle. In many ways that was something I never thought I would ever see. The fact he climbed onto the bouncy castle and enjoyed the vibrations while everyone else jumped was amazing. These are all massive achievements for my son. He never joined in dancing or games and wandered around very much still in his own little world. But that was ok.

He ate when the food was offered and he never had a meltdown or attacked anyone and he was smiling and happy. I could end here as these are all massive achievements for us.

The Santa came.

He has no idea who Santa is. He has no concept of Christmas. So I just held him on my knee while the other children got excited and waited eagerly for Santa to give them a gift. He moaned and squirmed a little with being held but seemed to watch in his own little way. As an adult I knew at some point his name would be called. But how would he know that?

“Isaac” said Father Christmas with his usual smile and excitement.

I was just about to take my sons hand and drag him up. But before I could move he stood, he looked right at that man in red and he walked right up to him, took his gift and brought it right back for me to open!

imageHe responded to his name! He took a present from Santa! He watched others and figured out what was expected!! I am so overcome with pride about those things.

Not that long ago he had no idea what his name was. He would not go anywhere he had not already been to before. He never watched other children. He would not have had any idea what a present was, especially if it was wrapped.

But this weekend I had my Christmas miracle.

And later this week I have another one too. He is only going to be Joseph in his school nativity play! He is part of it! He has a role! And to whatever degree he understands he will be acting out that role. It is what seven year olds do. But something I never dreamed I would see.

In case you did not know, my son has classic autism. He is still wearing nappies and unable to speak. He has Neurofibromatosis, a genetic condition that can cause learning difficulties and delay. He can not read or write or count. He can not dress himself. He is very much in his own world. I worry what the future holds for him, and the many hundreds of others like him in this world.

But miracles happen all the time. And this Christmas they have happened to me.

Keep looking and one may just happen to you too.