Why Does My Autistic Child Have No Awareness Of Danger?

Earlier today I was walking home with my autistic son. The closer we got to home the less he wanted to hold my hand so, rather reluctantly, I let him go. We were on a pathway with no other way other than straight ahead and I could see our home right ahead.

Without so much of even a glance my son stepped off the path and ran across a road at the end of the street. Thankfully I live in a quiet street but my son’s lack of danger awareness scares me.

My son is almost ten but he still can not safely cross a road himself. He has no concept of waiting at lights for the green man, no idea of road safety, no idea that sharp knives should never be touched and definitely no idea about the dangers of water. He is very typical of most children with autism. My son has no awareness of danger which puts both him and others at risk continually.

But why do so many children with autism have no awareness of danger and is there anything we can do to help them?

There are very valid and understandable reasons why autistic children (and adults because for some this will be a lifelong difficulty) struggle with danger awareness. I will break them down and explain how we can help a child or adult learn danger awareness despite having autism.

1. Rigid thinking and lack of imagination.

This isn’t lack of creative imagination but more social imagination and understanding people and events that have yet to happen or be experienced directly. How this presents in daily life for a person with autism would be a very literally and black and white thinking along the lines of ‘since I have never been hit by a moving car it is therefore impossible that this could ever happen.’ They can not ‘imagine’ that anything other than what they have experienced could happen. Even if they have came across a danger before such as water that was out of their depth a person with autism may struggle to generalise that experience. So if they were out of depth in a pool they visited on holiday once they may only link the danger of deep water to that particular place and time and not generalise that danger to all pools or beaches.

How to help: Never assume someone with autism is incapable of understanding. Use their way of thinking to help them. For example point out speed limit signs when out and talk about the fact that the faster a vehicle moves the more dangerous it can be. Linking speed to danger is a very important message that can be generalised as it is very rule based.

With water point out warning signs that are often universal too and if there are any lifebelts around talk about why those are there and how this points out danger. Never assume anything so when buying fireworks take time to show the packaging to the child or adult and let them see or read the warnings for themselves if they are able to. Repetition is often the key for anyone but especially so for someone on the spectrum who may require extra processing time.

2. Uneven developmental profiling.

What this means is that while they may, on the surface, seem to function similar to children or adults their own age there may be areas like social skills or awareness of the world around them that they struggle with. It is very true that autistic’s see and experience the world in a very different (and wonderful) way but this may mean they focus on or obsess on things to the detriment of other skills. They may have a unique and amazing ability to tell you the make and model of every car that you pass, for example, but have no idea where the local police station is should they need help. It’s not that they are not observant just that they have focussed on something else instead, like how many bricks form a pattern on the next door neighbours wall.

How to help: Give them a reason to focus on what is necessary. So if you feel it would be worthwhile them knowing where the police station is explain why and have a visual chart with a photograph so they have to place the photograph either on the map or somewhere else to help them visualise what you mean by the police station and why it’s important to know where it is. Having visuals for traffic lights or other safe places to cross and looking for these helps too. In your home allowing them to stick warning stickers on things like sockets can help remind them of potential danger too. Visuals simplify, are easier remembered and are portable. I can’t recommend them enough!

3. High sensory needs (that can either overwhelm them or lure them to the point that everything else gets forgotten.)

For my son the lure of water is so high if he sees it he wants to touch it so badly that he can not see anything else going on around him. For others their anxiety levels can rise so suddenly when they have so many sensory stimuli bombarding them at once that they just have to run or drop to the floor and they blank out everything else in order to cope. This may happen suddenly in the middle of a road if, for example, they heard a dog bark and they are scared of dogs.

How to help: If you know somewhere will be noisy then noise cancelling headphones may help. Sunglasses may help with bright lights and having fidget toys may help redirect the need for sensory feedback too. My son has a massive lure (and fixation) on elevators so I allow him that ‘fix’ before I expect him to do what I want. I use ‘first lift, then shopping’ as otherwise he would simply run to the elevator while I shopped. It’s about working with and adapting to sensory needs rather than expecting them to suddenly disappear. Be creative and, if you can, even ask your child about what things stress them or what they enjoy and see if together you can find a way of supporting them.

Of course autism is a spectrum and for every autistic person who has no awareness of danger you may have another, like my daughter, who is hyper aware and as a result makes herself ill with worry at perceived dangers that are extremely unlikely. A shark eating her up at the local public swimming pool is hardly going to happen but she will fear it anyway.

Living with someone who has limited or no danger awareness (or even hyper aware and therefore highly anxious) is difficult. It takes patience, time and a willingness to adapt and understand to help teach danger awareness, but it can be done. I know for some children (and adults) there will be extra barriers such as learning difficulties and communication difficulties and some children will never reach a level of awareness or understanding to have any grasp of danger awareness at all.

I continue to do what I can to help my son learn road safety. While he is learning though I make sure to keep him as safe as possible. The more I teach him about what I feel he needs to know to be safe the more he teaches me about how smart and wonderful his way of looking at the world is too.

It’s all about balance. Independence verses safety, teaching but being willing to learn too.

Lack of danger awareness can be terrifying but with patience and understanding it can be taught. Never underestimate an autistic person’s ability to learn.

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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 Surprising Skills Autistic Children May Struggle With (and tips to help them)

Even before my children were diagnosed as being on the autism spectrum I could see that they were struggling with certain things. The truth of the matter is we all struggle with different things in life and we all have strengths and weaknesses.

When I researched autism I could see so many of the difficulties my children had fitted with the diagnosis like not giving eye contact, not responding to their names, having repetitive play or movements, struggling with communication (speech in particular), and not understanding the play and actions of their peers. However some of the things they struggled with seemed initially to be unrelated to autism but are in fact much more common among those on the spectrum than those who are not. The following everyday skills are not part of the criteria for autism and neither are they things that every child with autism will struggle with but if you have a child on the spectrum you may relate to some of these struggles with your child too.

1. Blowing their nose.

Over the years on autism support groups (online and in person), this seems to be a common struggle for many children on the spectrum. There seem to be a number of reasons why this skill can be hard to learn including understanding the concept, sensory issues and developmental delays. My twins are now 9 and still neither of them understand or have the ability to blow their own noses! For my son the whole ability to understand and follow instructions is a huge struggle and for his sister it’s much more sensory and developmental.

Some tips for helping your child (preferably when they don’t actually need to blow their nose so they can avoid the added grossness of snot!) develop this skill are:

* Using a straw to practice blowing so they understand the terminology,

* Encouraging blowing from the nose gently with the mouth closed.

* Making nasal sounds like ‘Choo’ from the nose rather than the mouth.

* Use a smell that could endure sneezing such as pepper (though always do this under very close supervision)

2. Tying Shoelaces.

It should be noted this skill is not usually developed by any child until around the age of 7 or 8 though for children on the autism spectrum is is often much later. This is due to so many factors such as fine motor control difficulties, sequencing difficulties, co-ordination difficulties and sensory issues involved in pulling the laces tight enough.

If your child is struggling with this don’t panic. Here are a few tips to help:

* Try showing them from behind them as showing on your own shoes will actually be a mirror image of what the child needs to do and this could cause the child to become confused.

* Use visuals to follow showing what the laces look like throughout the process therefore breaking down the language issue and sequencing difficulties.

* Watch YouTube videos of different ways to tie as there may be a way that makes it much easier for your child to grasp independently.

* Invest in self trying laces or elastic laces so that tying isn’t necessary.

* Buy shoes with Velcro or other type fastenings to avoid the need for shoelaces altogether.

3. Hand Writing.

Not every child with autism will struggle to have legible and neat handwriting. My daughter is a perfectionist and her handwriting reflects this, but for many children it is a huge struggle. Some of the reasons for this are lack of motivation, fine motor difficulties, sensory issues with holding writing utensils, processing speed and sometimes other learning difficulties such as dyslexia. Some ways you can help your autistic child with this include:

*Use technology to help but having apps that include letter formation and encourage the child to use a stylus in the same way they would use a pencil or pen.

* Make it fun by playing games or drawing pictures to take the pressure off the child.

* Allow the child to type instead of using handwriting for some tasks so as not to inhibit their creative expression too much by taking the onus off the physical ability to write and onto the actual content. (As adults how often do we actually hand write now?)

* Experiment with different media and materials such as pens, crayons, or paint, to help bypass any sensory issues.

* Stay encouraging! While handwriting is a skill we all need it is less essential than ever for future employability these days.

4. Continence related issues.

Many children struggle silently with continence related issues and many parents are embarrassed to talk about things like bed wetting. While some children, both autistic and neuro-typical, may sail through potty training many will struggle. It is ‘normal’ for many children on the spectrum to have a delay of some sort in this area either by not being developmentally ready in line with their peers, having huge anxiety about one or several areas of the task, having sensory issues around bathrooms or underwear, or struggling with the social awareness of it all. Don’t panic if your child is one of those struggling and don’t feel you are alone. Here are some ideas that may help, though if you feel there could be any underlying medical issues or if something has recently changed with toilet training in any way do seek medical support.

*Try using visual schedules outlining the stages involved in the skill from understanding the need, sitting on the toilet, cleaning up and pulling clothing back up. It may take much longer for someone on the spectrum to sequence naturally so be patient.

* Eliminate any obvious sensory issues or barriers by having something for the child’s feet to rest on while on the toilet so they don’t feel they will fall, empty any smelly bins, having the room calm and tidy and if using a public toilet try and find one without noisy hand dryers if this is a trigger.

* Go often and make trips more routine rather than waiting until urgent. Many children on the spectrum thrive with routine so having regular routine visits can take away stress.

* If your child is socially nervous having a card or code they can use to be excused from school lessons to go could make things easier than having to get the teacher’s attention and communicate the need verbally, all of which can be immensely stressful for some autistics.

* Don’t expect a smooth ride! Change in routine, high anxiety, family change in circumstances and even hormone changes can affect toilet training so much.

* Be respectful always. Don’t laugh at accidents or mention struggles in this area with your child as it could damage their self esteem.

5. Sleep.

No-one told me my son’s severe difficulties with sleep could in any way be related to his autism! A quick google or chat to parents of autistic children and it isvery obvious just how common sleep issues are for anyone with autism. These issues range from inability to settle to sleep, inability to stay asleep or inability to get back over to sleep therefore waking extremely early. Sleep is vital for our mental and physical health and lack of it can have significant effects such as memory loss, fatigue, ill health, poor diet, inability to focus, irritability, mood swings and weight gain. There are a number of key reasons why it is thought autistic children and adults find sleep a struggle and these include anxiety, sensory issues (around clothing, bedding, lights and noise), hormone issues, lack of time awareness and different bodily needs. My son can function very well on four or five hours sleep for example while I can’t!

Some ideas to help your child with sleep:

*Having a clear routine to help establish time and expectations.

* Using visuals such as a grow clock or nightlights.

* Physical and environmental factors such as black out blinds and toy free bedrooms to remove distractions.

* Background noise such a while noise (hoovers/fridges/freezers etc) which can be calming for some or perhaps quiet, peaceful music.

* Technology free time before bed to avoid stimulating the mind too much prior to sleeping.

* Some parents choose to use natural products like lavender oil or prescription medication from paediatric doctors such as melatonin.

These are just five things I was surprised my autistic children struggle with and I could have picked so many others like riding a bike, regulating their body temperature, and even dressing themselves.

Don’t underestimate your child though. If there is one thing my children have taught me about autism it is this: they may struggle in some areas but they excel in others and they bring me untold joy daily.

Have you related to any of this? Feel free to share!

A Nine Year Old’s Letter To Her Disabled Brother

Dear Isaac,

I know you can’t ever read this but maybe one day I will read it to you. Maybe one day you will understand.

Tonight when you moaned and screamed when I was trying to watch a video you made me grumpy. I still love you even when I got mad at you and I am secretly glad you are well enough to scream and moan now.

The last two days I have watched you have lots of seizures and I have been so worried about you. I worry you might go to hospital or you might faint. When you have lots of seizures I don’t like going to school or leaving you. I call your name to try and wake you up. I prefer you wide awake and acting normal. I miss your screaming and being noisy when you have seizures. It’s like you are there but not there. You scare me but I still love you. I pray God will stop your seizures soon because I want you better.

One time I counted you had at least 7 naps in one day. I played card games with mum and dad and still you didn’t wake up. That made me sad. I missed you that day so much.

When you have a bath I really want to play with you and have fun but just as I start to have fun with you you push me away and makes me cry. Why do you do that? I wish you could talk to me and tell me. I would understand. I love you.

I love going on trains with you and going to the park. You are always happy in those places. I know you love me pushing the roundabout for you. I like seeing you on the swing too because I got you that swing for you, though I know you will never understand that. I did it because I don’t think life is fair to you and its better when you are happy. When you are happy I am happy too.

You keep me awake with his noises at night and wake me up early. I forgive you. Always.

You kill my fish by feeding them. Feeding fish is good Isaac but maybe not with talcum powder, toothpaste, trains and bubble bath! You do lots of naughty things like use felt pens on the armchairs, tipping bins, pulling pictures off walls, wandering away, and you always have to be first in the house. You make mummy and daddy sad but I want to tell you it’s ok. We all forgive you. We all love you. Sometimes we might be mad but we always forgive. We know you don’t mean it, though I have some baby fish now so it would be good if you just let ME feed them. Would that be ok?

Sometimes you get more attention. Mum is always bathing you because you scream and throw things if she doesn’t. You always want to go out even if I don’t want to and it sometimes feels like you always get your own way. It’s not really fair but I still love you.

You can scream very loudly. You hit me all the time. Please can you be gentle? Until them I will be patient while you learn.

There are things you can’t do. You can’t talk or write or read. I know you can’t read this but maybe you will understand if I read it to you. Maybe.

You can play just in a bit of an awkward way like tipping things on the floor or eating teddies. You only sometimes cuddle me but that’s ok.

You can be funny though. You try to push the roundabout AND get in it at the same time! You throw your fork away when you have finished eating because you forget we can wash them. You put your fork in-between your toes and then pick up food with your fingers. That’s clever and funny. You put your iPad behind your bed and think it will magically charge there. You chew charging leads and then wonder why they don’t work anymore. You make me smile and I really love you.

You never walk to school because it’s 14 miles away. You get star of the week more than me because there are less children in your class. That’s unfair! You get it for silly things too. But you never have show and tell. That would be funny because you can’t tell anything anyway. That must be hard because I know you want to say so much.

You are always on google maps. I think that’s amazing and clever. Some people don’t think you are smart but you are.

You never get to be secret student like me. My school is doing secret student now and I was secret student today in my class. When I was chosen I thought of you. Would you know what that is? The more I get bigger the more I wonder about things that you might never do or understand. You know what though, I think they chose me deliberately because I was having a bad day. I went to school crying today because you had some of those seizure things again and I want to make sure you are ok. I can’t be a good sister if I am at school can I? I’m sorry I left you.

My friends don’t understand what it’s like having a brother like you.

Sometimes I don’t want them to even know about you. I worry they would say nasty things about you because you are different or say nasty things about me. My best friend knows about you though. She worries that you may hit me but I don’t like her questioning things about you. It’s hard to explain about you because you are just, well, you are just very special and sometimes precious things are best kept secret. Is that ok?

Sometimes I love you Isaac. Sometimes I hate you. It’s hard having a brother like you but it’s also easy having a brother like you. It’s hard to live with you but its easy to love you. Really easy.

You are my friend sometimes and a bully other times. I wish we could be friends more. I am going to try and help you do that.

You teach me how to be patient and that it’s ok to be different.

I want to be there for you when you are bigger. I want mummy to teach me to care for you. Please let me me do that will you?

Please try and keep learning. I believe in you. I will teach you. I can do dividing with remainders now and everything! But what I am most happy about doing is making you smile.

You are the best brother in the world even when you make me cry. I know I make you cry too.

You help me. I help you. How does that sound?

If you can’t say yes just sign it please.

It’s ok because I understand.

With love,

your sister Naomi

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)

Dear Special Needs Parent…Please find time to cry

Dear special needs parent,

I can see behind that false smile, the reply of ‘I’m fine, thanks’ and your happy photographs you post on social media. I need you to know something very important as a parent to a child or children with additional needs: it’s ok to cry.

When you pick that child up from school to go to yet another appointment but you feel you are not getting any closer to answers; please find time to cry. I know you want to ‘brush it off’ as just another day and get on with things. I know you need to ‘keep going for the sake of the children’ as you add another outpatient appointment in your diary for a time you know will clash with the school pick up of your other children but you just don’t have the courage to say so.

It’s ok to admit it’s all draining and never ending.

You don’t have to be strong all the time.

Please find time to cry.

When you feel you are the worst parent in the world dragging your crying child to school because they are not coping and you want to help them ‘sort it out themselves’ because you know ‘this is just another incident and tomorrow there will be something else’ but deep down you still doubt if you are doing the right thing. When you worry about their mental health every bit as much as you worry about their physical wellbeing but you struggle to get anyone to take you seriously.

Don’t let the parent guilt consume you.

Don’t ever feel you are alone.

Please find time to cry.

When your child with communication difficulties is attacking you and won’t stop screaming. When you have missing hours you know nothing about and continually worry something has triggered or stressed them but no-one has communicated that to you so you can’t ‘sort it out’ and ‘make it right again’ like you always do. When you feel like you daren’t breathe incase one of your children has another meltdown and you can’t even use the bathroom without an audience.

It’s ok to want privacy.

It’s ok to feel you have lost control and you can’t make everything right for everyone.

Please find time to cry.

When the system grinds you down. When you feel scrutinised and judged by schools, professionals, and the general public. When you are heart sick of writing forms about your child’s struggles because you are trying to see a brighter future than everyone forecasts. When you no longer have any control over where you child can be educated or what therapies they can get because your child’s needs mean someone else feels they should make these decisions for you. When you feel robbed of everyday life experiences and see reminders of this everyday in social media posts and family occasions, please find time to cry.

It’s not a weakness to cry.

There is no shame is saying ‘this is hard’.

In fact by ‘holding it all together’ you are actually falling apart more than you realise.

So find time to cry.

It doesn’t mean you don’t love your child.

It doesn’t mean you are not accepting their condition or diagnosis.

It doesn’t mean you are any less.

It doesn’t mean you are not coping.

It means you are human.

Dear parent if a special need child or children: do yourself the best favour you possibly can today; find time to cry.

I promise you you will feel better for it.

Why I Struggle When My Special Needs Child Gets ‘Star of the Week’

So my 9 year old son came home from school on Friday with a certificate and photograph in his bag. There was no eagerness to show me and no message in his school diary; it was just there. Of course I am proud of him and told him so and absolutely it will be displayed on his bedroom wall to honour his achievements like his sisters are in her room. That is never in doubt. However, I have to be honest and say I really struggle when my son gets ‘star of the week’ and here is why:

1. It reminds me just how far behind he is academically.

It’s a sobering thought that my son has been at school five and a half years and is still working at pre-school levels in many subjects. The very fact he still has no idea that star of the week is any sort of aspirational incentive to even aim for says it all. He isn’t being modest or shy in not showing me his certificate; he honestly still doesn’t get the whole social aspect of celebrating achievement in any way. His twin sister commented on his award saying ‘well done Isaac but…’ and she went on to ask why he is still so far behind her. That’s hard. You see I live with my child daily and I know he struggles but seeing it on paper seems to somehow make it raw. It hurts. I am proud of my son but sad that he is behind so much. I don’t think anyone wants their child to be 7 or so years behind their peers in any way.

2. It makes me scared for the future.

I try not to think of the future. I live everyday and enjoy the moment but wisdom would tell me that I do need to plan for the future too. I shared my sons achievement on social media and today someone asked me in person what happens to children like my son when they finish education. The reality is my son will likely not be suitable for college and academically will never reach the level required for university. Employment is pretty unlikely too so our current options include him living at home and attending day care services. That’s not what I planned for my child when I conceived him and carried him for nine months, and although I do need to be mentally prepared for this seeing his star of the week award just feels like his future is all planned out and that is scary. His options are limited and seeing his academic ability on a laminated sheet makes that a stark reality. I won’t lie, that is hard to accept.

3. It makes me feel he is being defined by his ability to learn.

When I think of my child I think of am energetic, fun loving, teddy chewing, mischievous little brown eyed boy who does the best squeezy hugs and who loves his food. I think of the child who has incredible gifts in communication despite having no spoken language. I get so much joy from singing along to the songs he plays on his iPad and going to lifts with him. I see a child who gets so excited every time Bing Bunny comes on the TV that he bounces in the armchair he is sitting in. I see a child who could go hundreds of miles to places on google street map even though he has significant visual impairment. I don’t see his lack of ability to read or write or speak as an issue and none of those difficulties define him. So when I see his star of the week award I hope that this is not just how society sees my child either.

My son will always struggle with some things. Professionals and medical specialists have told me it is unlikely my son will ever speak to me. Education have told me he won’t ever attend a mainstream school and college or further education is unlikely. It’s a very sobering thought but with that comes my absolute determination that my son should never ever be defined by his struggles.

So I will stick his award on his bedroom wall and smile. It’s great he has been recognised. It’s great he is making progress but I never forget that for everyone of us life is much more than our ability to learn or how far we go in education.

I struggle when my son gets star of the week because his ability to achieve should never be limited to traditional education. I am raising a remarkable, brave and wonderful child who is breaking the mould in life. He is a star in so many more ways than just trying to write the digit 2. One of the many reasons I write about him is to help others see beyond his academically ability (or lack of) so I will stick that award up and get back to celebrating my son in every other way I do daily.

Don’t ever let educational achievement define anyone. We are much more than our ability to learn.