Why It Appears I Let My Autistic Son Get His Own Way

As usual my son is the first to wake up. It feels like I have only just got to sleep. I probably have. As he makes his way downstairs he switches every light on he passes, takes a handful of teddies with him and finally settles down on his chair with his two iPads before screaming for the TV to go on. His presence defines the household. His demands can seem relentless and his screaming earth shattering.

To almost anyone who reads about him, comes into my home or works with him, the impression is the same: I let my autistic son get his own way.

What people see is just the tip of the iceberg and the reason I am writing this post is to show that what can seem on the surface one way isn’t always the case.

My son is ten, he has severe autism. He has no spoken language. He has epilepsy. He has a progressive genetic condition. Most importantly for this post he also has something known as violent and challenging behaviour.

Violent and challenging behaviour in children with additional needs like my son is much more common than people realise. The reason is simple: people don’t talk about it. There is a shame that comes with it, as well as judgement, embarrassment and fear.

My son used to injure me. He would kick, punch, pull my hair, bite, destroy things, scream, harm himself and throw anything he could get his hands on. He was frustrated, angry and violent, both to others and himself. I couldn’t ‘have words with him’ as his understanding was (and still is) that of a one year old. He had no concept of being grounded since he never left the house without me or went anywhere and taking things off him proved counterproductive as he made absolutely no connection to the removed item and his behaviour.

I needed to understand him better not punish him. I needed to realise what was driving his behaviours, even when he couldn’t tell me.

His behaviour was similar in school and home so this wasn’t simply a parenting issue or an education issue, this was a behaviour issue that needed addressed consistently and with a lot of patience.

So what changed?

Well firstly I realised my son wasn’t being controlling. He was anxious.

He wasn’t being hurtful or selfish when he injured other people or property, he was dealing with emotions he had no idea how to cope with.

He was confused, upset, had unmet sensory needs, frustrated at an inability to communicate and be understood and he showed this in the only way he knew how.

Behaviour is one of the biggest and most effective ways we all communicate.

He needed things to change and that change started with me. I put in place a very low arousal home life. To the outsider it may look just like my son gets his own way but realistically we are actually all getting our own way instead because the entire family is now safe, our property is safe, and most importantly my son is safe.

My son does get to wake when he wants, watch TV when he wants and choose his meals. He has access to his iPad from the moment he wakes and when he wants a bath I bath him.

People can think what they like but by responding to his natural body clock and going with the times that suit his natural rhythm he is calmer, happier and more settled.

By allowing him to watch the TV he wants I am actually calming him as he uses the schedule of a well know children’s channel to know when his school transport is due, when it is time for his bath and when mealtimes happen. This eases his anxiety and helps him make sense of his world.

By letting him choose his meals he feels much more in control and less anxious as he then knows not only what is coming but when it is likely to come too. Surprises make him anxious, and therefore more likely to be violent.

As for the iPad: well it turns out this is his very means of communication, his voice so to speak, and without this he has no means of showing me what he wants or even if he is unwell. To deny him that is taking away the very tool that allows him to be understood.

Then there’s the bath: this is fundamental to his mental well-being and triggers him to know it is time for winding down for bed. By making this a time for arguments or battles because the time wasn’t convenient for me was one of his biggest triggers for his behaviour. I was inadvertently saying to him that it was my way or no way, which made him feel invisible, out of control and helpless.

Low arousal for us is about letting my son know that he is understood, loved and accepted for who he is. This is his home and he needs that place of sanctuary and escape to be able to recuperate and relax in order to face the world. He needs to feel like his needs are met and that the atmosphere is one of calm and love not anger and frustration.

Many would say I am doing him an injustice by allowing him to ‘have his own way’. The argument is that in the ‘real world’ this is unrealistic. I understand that totally but my child’s ‘real world’ isn’t going to be about an employer, a spouse and following the rules of the road as a driver. My son will have carers, support workers and respite staff and it is vital that they are not attacked in the way I used to be.

Low arousal isn’t about letting your child dictate. It’s about understanding, listening, responding and meeting the needs of our most vulnerable children when they need it most. It’s about responding to the communication that the challenging behaviour and violence actually is and recognising that a child is struggling and needs help.

You might see a child appearing to get his own way. I see a child who is understood, calm and happy.

Until you have lived through what I have you may never understand. I don’t judge you for that, I just hope you never have to experience it.

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A letter To The Parents Of A Struggling Child

Dear parent,

I know at times you feel so helpless and alone as you watch your child struggle. When we give birth and hear our babies cry for the first time from that moment on we want to help them and make everything right for them.

We don’t want them to be ill.

We don’t want them to be unable to eat.

We don’t want them battling for breath.

We don’t want them in pain.

We don’t want them to be the last to meet milestones.

We don’t want them emotionally or physically or socially struggling.

There is something about watching your child struggle that tears your heart in two. That feeling of uselessness, helplessness, having no control over things. That feeling that you should be the one to fix it all for them, comfort them, make it all better…but you can’t. That feeling of not being able to meet your child’s needs, whether that’s feeding them, holding them, carrying them or teaching them. That feeling of having to accept help for the sake of your struggling child.

I’ve been there too.

I know that feeling of failure well. That gut wrenching feeling as a parent when a nurse, therapist, teacher or doctor is the one that gets your child’s first eye contact or enables your child to say their first word. I understand that feeling of being robbed of something that should have been your privilege, not theirs. I’ve experienced that feeling of despair, the wanting to give up, the inadequacy that comes with having a child who is struggling.

I’ve cried so many tears and I’m sure you have too.

No-one wants to be the parents of the child who isn’t talking when all their peers are. No-one wants to be the parents of the child who has failed their six week check up, two year check up and even their pre-school check up. It’s a kick in the teeth for all the hard work and investment in your child when all they see is still a struggling child.

I know the fights. The fights to prove you are a good parent and your child’s struggles are not due to neglect. The fight to get your child help. The fight to be listened to. The fight for the right educational environment for your child to thrive. The fight for basic equipment to help. The fight for support. The mental fight to get through each day.

I know the fears: for the future, for their education, because they are so vulnerable.

When you are the parent of a struggling child it means you struggle too.

Too many judge.

Too many are ignorant.

Too many refuse to understand.

Too many ignore.

Having a struggling child is lonely. It’s isolating. It’s heartbreaking.

But I also know you are doing everything you can and more. Your determination, courage and strength shines through you. No-one could love, encourage or support your child more than you do.

You’ve got this.

My child struggles too. Their struggles may not be the same ones your child faces but that doesn’t matter. We are still in this together.

Stay strong my friend. There will be better days ahead.

Your child may be struggling but that’s not your fault. Hold your head high and show the world who you are.

You are not a failure for having a struggling child.

You are not to blame.

You are a wonderful parent.

Never ever forget that,

Yours,

A fellow parent of a struggling child.

My Disabled Child Is Still A Child

Before I had children of my own I genuinely thought parents pretty much stuck together. I mean after all aren’t we all in the same situation struggling with lack of sleep, worrying for our children’s future and tidying up toys every day?

Then I had a disabled child and I discovered that somehow that changes things.

Other parents no longer talk to me about standing on Lego because they assume I won’t relate since my child can’t play with Lego.

Other parents don’t mention all the activities their child does after school and how they feel like a glorified taxi driver taking their kids to dance, swimming and karate. They know my child isn’t able to do these things so they don’t bother to share about them with me.

Other parents don’t message me for advice even if my child is older than theirs because they assume I won’t know anything about normal child development since my child is disabled.

I could go on. I’m sure you get the point though.

There is an assumption by other parents and society in general that my disabled child is somehow not really a child like other people’s. They assume my parenting is nothing like theirs.

So let me tell you something very important: disabled children are still children.

They still have toys.

They still watch TV.

They still try and get away with more time on technology than they should.

They still turn their nose up at sprouts, throw toys in frustration and demand all our time.

They also outgrow clothes and shoes quickly, lose teeth at the same time as other children, go to school and learn, hate homework and catch the cold like other kids.

Yes every single child is unique, every life is different and my child struggles to do many many things other children do naturally (like speaking for example) but that doesn’t mean I don’t want to hear about your parenting issues nor does it mean I won’t relate.

You might be surprised to know we actually have more in common than you realise.

I have a disabled child. That may mean some parts of parenting are a little different to others but at the core my son is just a child like any other and I am a parent like other parents too.

Please treat me like any other parent. Please see my disabled child as a child just like yours.

We are all in this together and we have much more in common than we both realise.

Oh and my son may not play with Lego but I can still appreciate how sore it is to stand on. You have my sympathy there.

My Severely Autistic Son DOES Have A Bright Future

Six and a half years ago when I took my toddler to a clinic and left with a diagnosis of severe non verbal autism , pica and global developmental delay my heart broke. It didn’t end there either. Six months later he was diagnosed with a progressive genetic condition. A year later he added vision impairment to his list. At seven he added an optic glioma, a form of brain tumour and at nine, epilepsy.

As I write this he is ten, with the developmental age of a one year old, the speech of a nine month old baby (he is non verbal), he isn’t yet potty trained and requires round the clock care. He has to be medicated twice daily to keep major seizures at bay. He needs six monthly MRI tests to monitor his brain tumours.

On paper his future doesn’t look good.

I have spent so much time breaking my heart for my son and all he will miss in life. He likely won’t fall in love, get married, have a family, have a job, learn to drive, attend college or university or live independently; all the things parents expect from their children as they grow. He can’t yet write his name, he’s never attended mainstream education and his care needs are so high I have been his full time carer since he was born.

So given all that information how can I possibly say my son has a bright future?

Quite simply this: Quality of life isn’t determined by what other people think.

I thought my child should find a partner, perhaps have a family of his own, get a job, drive, contribute to society in some way and make a difference. I thought he should go to school, perhaps onto college or university then find happiness and fulfilment in a career of his choice.

But who says any of this is a bright future? Who determines these things as quality of life?

In actual fact my son has an amazing future ahead of him, one very different to how I imagined, but even more incredible!

He’s never going to carry the burden of responsibility so he won’t stress about interest rates, taxes, mortgages or company shares.

He’s never going to become embroiled in complex relationships so won’t experience the heartache of divorce or family breakups.

He will remain blissfully sheltered from many of the awful things that life carries with it like murder, abuse, political turmoil, homelessness, drugs or wars.

His simple life will be the envy of many.

His needs will be met, either by carers or myself, for as long as I live. He has a sister who adores him and who I know will do all she can to make sure he is looked after too.

He will spend his future not in the drudgery and stress of daily commutes to work or long shifts but in doing what he loves most. He’ll be taken swimming, the cinema, cafes, shops, garden centres and day trips. It will be like he’s retired without ever having to have done the fifty plus years employment first.

Clothes and food will be provided for him. Other people will arrange whatever finances are required, drive him or support him in transport and make sure he is happy and well.

His future is, in fact, what so many of us would dream of. He will watch what he wants on TV, explore the world via google street map and see family often.

He will, as he already does, be surrounded by love, respect and support.

I’ll take him to as many lifts as he wants because his years of education will be complete.

I am not deluded. I am not just looking at life from rose tinted glasses. I am fully aware that my son will always need a huge level of care and that I may not always be around to give him that. I, more than anyone, understand how vulnerable and naive he is and always will be. I know i will fight budget cuts, endless complex forms to have control of his finances and health needs and that I will likely get little to no respite when he passes from children’s care teams to adult care teams.

This won’t be easy for ME but for HIM the future is bright.

We are so quick as a society to assume that anyone with learning disabilities, severe autism or complex needs is a burden. We see their quality of life as somehow less because it doesn’t follow the tradition path of higher education, work and raising the next generation. We see their inability to pay taxes as somehow awful and view them as beneath others.

My son, and thousands of others, walk a different path in life. They face a future quite different to that which we see as ‘normal’. Yet their future, their existence, their needs, are not in any way less or second class.

My severely autistic son’s future is full of life, love and fulfilment. That to me is the epitome of a bright future and quality of life.

I am looking forward to it and if he understood what the future was I know he would be excited too.

I Used To Worry About My Autistic Child’s Future Until I Met An Adult Just Like Her

All parents worry about their children: Will they make good healthy choices? What if they get hurt? Will they have friends? How will they cope with handling money? Will they be safe?

It’s standard parenting really to worry.

That worry is amplified if your child is autistic. You worry even more about them misunderstanding language, making friends, and being independent because they are more vulnerable and different to their peers, and because society isn’t yet as accepting and embracing of difference as it should be.

I worry about both my autistic children but for very different reasons.

My son is profoundly autistic. He is, however, likely to have the support he needs throughout his life because his needs and difficulties are very obvious to people. The fact he has no spoken language, he has significant medical issues and severe learning difficulties on top of his autism mean that my worries for him are more about will he carers look after him, will he be understood, will he be respected and so on.

With my daughter, who is also autistic, but who has no accompanying medical issues other than anxiety (which is huge and I would never underplay that), and certainly no learning difficulties, my worries are very different. I worry about people taking advantage of her when she is socially naive to their motives. I worry wether she would manage a work environment with her unseen and often misunderstood sensory difficulties. I worry that her communication difficulties and social anxiety will mean she is isolated and unsupported. I worry that her naturally caring nature and very tender heart would mean she is vulnerable to bullying and cruelty.

I try to never let her see my worries but they are always there. When she struggles with change at school on days like sports day or comes home in tears because she had been unwell and unable to tell anyone. When her anxiety is so high she has panic attacks and nose bleeds and I am powerless to make everything right.

She worries about everything and I worry about her.

Then I met Tom on a social media group. I say ‘met’ him but he was a stranger posting on a group both by commenting on posts relating to my daughter (and other posts too) and writing his own posts. Very quickly to us both it became obvious that Tom and my daughter had so much in common. Examples included little things like the fact:

1. They both preferred to sit on hard surfaces like the floor instead of traditional furniture like armchairs and sofas. Naomi spends hours a day, often all day, playing on the floor. It turned out Tom does that too but as an adult to relax in other ways like watching TV.

2. Naomi really struggles with needing personal space. She builds barricades out of toys to create circles around her that no-one can enter. Tom struggles with personal space at work in a similar way.

3. Naomi takes language literally timing me for example if I was to say ‘I will be back in a minute.’ Tom was struggling with the same thing and mentioned misunderstandings at work and with his family due to the same literal understanding of language.

4. I mentioned in one post that Naomi was terrified of flies, wasps, bees and any other small flying creatures. Tom was reminded of the time his parents told him he was so scared of bees he refused to get out the car.

5. Both Tom and my daughter would rock to self soothe.

I could go on but the resemblances continue to grow the more Tom posts about his life and the more he reads about my daughter.

Coming across an adult who is so like your child is incredible. It gives me hope when I once had worry, it excited me when I used to fear and it inspires me when I was once disheartened.

I know Tom isn’t my daughter, but with so many similarities I feel we were meant to meet to ease my worries. You see Tom is independent, he has a full-time job, he has friends, and though he struggles with isolation at times he never loses hope and he never stops trying. Of course he still has struggles but he did well educationally and he has achieved in so many ways. He lives the sort of life I hope my daughter might have one day but yet I worried wether it would happen.

Tom only found out he was autistic as an adult. My daughter was diagnosed aged 5. Tom doesn’t live in the same country either and his family life and dynamics are different. Yet the similarities are just enough to make me feel encouraged. What is even more important though is that hearing about Tom is helping Naomi.

While my daughter isn’t on social media yet I have been telling her about Tom. She is amazed at the similarities (have I mentioned Tom even shares her birthday?) and so encouraged to hear that while he may have some struggles (don’t we all, autistic or not?) he is achieving, happy and doing well.

She may never meet Tom but that doesn’t matter. We don’t have to meet people in person to be encouraged or inspired by them.

My daughter will one day soon be an autistic adult. Hearing about an adult just like her has been life changing for us both.

Thank you Tom.

I used to worry about my child’s future until I met an adult just like her.

If only every autistic child could meet an adult just like them too. Believe me when I say it really is life changing.

Coping With Worry As A Parent To Children With Complex Needs

One Sunday three months ago things changed in my family. Up until then I always worried about my non verbal severely autistic son but it was mostly around his inability to be understood, his challenging behaviour and what his future might be like. That changed on the 4th of March when I found my son face down on his bed semi conscious. He has just had a seizure.

That day he went on to have three more seizures and he slept on and off all day, not eating but at least having small amounts of fluids. He was referred to neurology though he already attended. An emergency appointment took 8 weeks but finally on 23rd April he saw the neurologist and an epilepsy nurse. She wanted an urgent MRI as Isaac has NF1 which causes tumours to grow on his nerves and a previous scan had shown Isaac had a tumour on his optic nerve.

However before we even had a date for his MRI on the 15th May I had a call from Isaac’s school to say he had arrived sleeping and had been sleeping all day and semi conscious. I immediately knew he had had another seizure. He was not home ten minutes when his eyes began rolling, his arms shaking and his mouth foaming. There’s general vague worrying for your child and then there is urgent medical worry. Once again it was confirmed by a doctor he was having some sort of ‘episodes’.

A week ago today he finally had his MRI under general anaesthetic. It’s his fourth one and I am worried. If his tumour has grown then chemotherapy is an option. If the tumour is stable we could be looking at epileptic medication. The future is unknown.

Yesterday Isaac had another episode in the park. He was violently sick this time. His sister was terrified and it was very challenging getting him safely home.

Things have changed. While I try to stay positive and keep my faith it is hard not to worry. How do you cope with worry when your child has complex needs?

I decided to reach out to some friends to ask how they cope with worry.

Charlie (whose son was having surgery the same day Isaac had his MRI) told me: ‘I try to stay busy when he’s in surgery and I remind myself of the reasons we’re doing this and the benefits rather than what might go wrong. It’s always a tense time and even though I keep my mind busy I’m physically exhausted as soon as he’s back safely with me. (www.ouralteredlife.com)

Steph (who writes at http://www.stephstwogirls.co.uk) had this to say: ‘All I can really relate to for this is when Sasha was in hospital for those 10 days three years ago. She had to have a CT scan rather than an MRI but there was other stuff to worry about, like her leaky valves… I guess I just tried not to think about it but in reality what I did was suppress it all in order to be as matter of fact about it all with her as I could be and prepare her/keep her calm.’

Lisa said ‘I don’t always realise I have been worried until after the event and then it feels like a weight has been lifted. I’m a massive over thinker but tend to have a positive outlook for the most part. Sometimes things haunt me afterwards…post trauma?’ (http://www.alifelessordinarywithautism.wordpress.com)

Cara (http://www.lylasangels.co.uk) told me: ‘I don’t worry, it’s like i go numb and just go through the motions. Before Lyla’s hip reconstruction last year a friend asked me how I felt about it and I went through my spiel about knowing it was going to be a tough recovery etc and he said yes but how do YOU feel? And i didn’t have an answer because I had no idea how I felt, I felt nothing really about her actual operation. She’s been under GA a couple of times before that for mri’s and I wasn’t worried or anxious, just numb.’

Maxine (http://www.downinfrintplease.blogspot.com) told me how running helps her cope: ‘Oh absolutely the running is my saving grace. Especially because I am always trying to fend off injury so there is such total granular focus on posture, cadence, breathing and there is no room for anything else in my thoughts for that blissful time. The outdoor space is open overhead so nothing visually pressing down on my shoulders. I am utterly free from it all when I run, and ever so much more able to cope thereafter. I also don’t pressure myself for times or even to run all the time (I take regular walk breaks) so it is only about the freedom and ‘me time’. If I don’t have it I am a wreck from trying to keep track of everything. I can’t imagine coping without it.’

Gemma (http://www.islasvoice.co.uk) uses humour to cope with her worry. ‘I am mostly numb and I hide everything with humour.Most of the time I try not to think because I know when I do my worrying consumes every bit of me.Luckily we don’t have any health stuff to worry about.Instead I wonder why everyone has discharged a severely autistic child and she has no support. I worry I’m a shit mum. I worry I should be fighting more. I worry she’s not getting everything she needs and should be getting. I worry about what will happen when I’m no longer here. Then I start laughing and joking and in my head it’s all good but I know it’s denial. It’s how I get through each day.’

Sally, who blogs at http://www.hunterslife.co.uk told me how her son helps her with her worries: ‘If I start worrying about all the things that I should be worried about – all the unknowns about the future (or lack of it) – I drown. So I try to take my cue from Pudding more and just live in the moment. Not very good at it but it’s a heck of a lot better than thinking about the alternatives.’

Jeanette finds crochet helps: ‘I use distractions here. My brain over-thinks all the time so I either distract it with a bit of crochet or some music (can’t do the latter if not on my own). The “having to concentrate on stitches or you’ll screw it up” really helps, that and being around others who “get” if you might be quiet. (Www.autismmumma.com)

Julia confessed to how anxious and worried she gets: ‘Noah had 3 anaesthetics in under 7 months. Each time I carried him to the room and held him till he was under. I buried the fear deep. Buried the worry. He needed me to be strong. I focused on him as a patient sometimes, rather than my little boy. I put my nurses head on as such as it was the only way I could cope. As he slept I’d talk to my sister in law about him. She’s also a nurse and it helped me get through it all. I still have nightmares about those months. He only has to cough and burning anxiety starts climbing up my body.’ (Www.bloomingautism.com)

Lucy (http://www.revelationsofaslummymummy.blogspot.com) is much more pragmatic about it all: ‘Bizarrely, I worry about not worrying enough. I’m a very pragmatic person, have had mammoth amounts of trauma previously. Anyway, I just cracked on, partly as a survival mechanism and partly because I knew no different. For me, that works, but I always wonder if my pragmatism perhaps leads to complacency with Brecon. He seizes every day, and it’s just life. He bites, pinches and scratches me everyday, and it’s just life. I really really hope my approach doesn’t lead to him being less efficiently cared for or me being less proactive in terms of getting him what he needs.’

Finally Anne from http://www.fainbowsaretoobeautiful.com told me: ‘I worry all the time. I find the best thing I can do is try and ‘park’ worries for a while. Realise I’m worried about something but let it go with the knowledge I’ll return to it in a while – whether that’s a few hours, days or months.’

So we all worry. My coping mechanisms right now include swimming, praying and of course writing.

One thing I do know though is that worry won’t change anything. Everyday is a fresh day and a chance to start again. And right now everyday Isaac doesn’t have a seizure is a bonus. Thankfully we have many more seizure free days than we do seizure filled ones. As for the MRI…well I will share those results as soon as we know!

And Isaac? Well he is flapping, smiling and laughing through it all. He isn’t worried about anything at all!

Five Myths About Having A Non-Verbal Child

I am a parent of a non verbal child. He has always been that way and possibly always will. It’s our ‘normal’, so much so that I often forget when others look at my son or ask him a question that they have no idea he can’t speak. Sometimes I want to tell the world everything about him, because he can’t do so for himself. Other days I want to keep everything about him private and locked into my heart because…well mostly because people, sadly, can be very ignorant.

I know people don’t mean to hurt and they are mostly just curious and well meaning about life with my beautiful son but there really does seem to be so many myths about what it is like living with a non verbal child (or adult). Here are five of the most common ones I have had said to me:

1. “Your house must be so much quieter than mine!”

This one doesn’t offend me but it does make me laugh. Just because a person can not speak does not mean they can’t make noise! My son can scream so loud he frightens the birds away for miles. He makes a lot of noises both with his mouth and with his body. He cries, he laughs and he shouts…it’s just words he can’t make, not noise! He is at least ten times louder than his very verbal sister!

2. ‘You must have no idea what he wants then if he can’t speak?’

This one makes me realise just how much emphasis we seem to put on spoken language when, in fact, it is actually only a small minority of what we as humans use to communicate. I carried my son for nine months, when he was a newborn baby I interpreted his cries when he was hungry, tired or wanted comfort. Nine years later and I still know how to interpret his actions and needs. I can follow his eyes, see his face light up in laughter or he can lead me by the hand to what he wants. He is an incredibly gifted communicator, actually more gifted than many of us who have become complacent in our use of spoken language. He uses google street map to take me to the doctors when ill (you can read more about that here), he uses photographs of places we have been to to request to go again and he uses objects like the TV remote to say he wants to watch TV. He may not have speech but he can still get his message across. It is us who need to learn to listen not him who needs to learn to communicate.

3. ‘Give him time. One day he will come out with full sentences!’

I know people want to be positive and offer hope. I get that. I understand that people don’t understand severe autism, global delay and learning difficulties fully and base their experience mostly on what they have read or heard from the media or friends. People don’t mean to hurt me when they say this, but it does hurt. While my heart would love my son to speak to me suddenly in sentences, with the exception of a miracle, that isn’t going to happen. There are only three recognisable vowel sounds in his ‘vocabulary’ at almost ten. He has ‘o’ (sounded out like awww) and ‘mmmmm’ and ‘ahhhhh’ when eating but these are considered so infantile his expressive language has been assessed at approximately 6 months old. It has remained at this age for three years with no signs of any improvement.

As hard as it is for society to accept; there are people who never develop speech and remain non verbal all their lives. There is offering hope to people and then there is false hope. The latter can destroy and damage so much. My son MAY say some words one day but the reality is he is more likely to remain non verbal. I can accept that and I hope one day others will too.

4 ‘I bet he must be so angry and frustrated all the time.’

I can understand why people would think this. Of course, like any other person, my son has times of frustration and anger. Mostly these, like any other 9 year old, are actually because he can not have his own way rather than directly due to his communication struggles. He IS understood and he IS happy. My son has never known any different. It isn’t like he had speech, became reliant on it like us, then lost it. He has always been non verbal and he has found his own way to communicate on his terms. If people take the time to get to know him they can tune into his needs and wants fairly quickly. Out of everyone in my family he laughs more than any of us so his inability to speak certainly isn’t making him angry or frustrated all the time, anything but!

5 ‘That’s so sad. You must be so heartbroken all the time.’

While it may be annoying having your child whining or nagging for something when you are busy, or asking a million questions all the time, how would you feel if you never heard your child say ‘mum’? Of course I get sad sometimes, I would not be human if I didn’t. There are moments it catches me off guard, like when I see my daughter singing Christmas carols or when someone asks me what my son wants for Christmas and he can’t tell me. On the other hand I have become much more grateful for the times my son climbs on my knee at 9 to show me something on YouTube he likes, or the times he squeezes me hard and still wants me to lift him up even though he is almost my height. When he takes my hand as he climbs out the car or rests his head on mine, he doesn’t need words to say how much he loves me.

Yes a part of my heart feels the pain of never hearing his voice but I am anything but heartbroken all the time. I have a bond with my son which is like nothing else. Silence says everything when we are just sitting together and those moments refresh me whenever I need it.

There are so many more misunderstandings about children like my son. Sometimes I deliberately don’t tell people he can’t talk because they immediately seem to stop talking to him just because he can’t speak to them. That upsets me, but more importantly it upsets my son.

I have had other parents tell their children to avoid my son out of fear that perhaps his non verbal status is somehow contagious. People generally equate non verbal with ‘not with it’ which could not be further from the truth with my son. In fact if he ignores you it says far more about you than him!

Being non verbal is not holding my son back, society is.

It is ok to not know about something you don’t have personal experience of but please be willing to learn.

I am a parent of a non verbal child. I don’t need to be his voice because he is perfectly capable of making his own needs and wants known in his own way: He just doesn’t use speech to do so.

My friend and fellow blogger Chris Bonnello hit the nail on the head with this (to see more of his fantastic memes and blogs see http://www.autisticnotweird.com)