Is Autism Awareness Helping My Autistic Daughter?

April is fast becoming synonymous with autism awareness now. The media cover it, charities promote it and even schools use it as a time to raise the profile of a condition that is guaranteed to affect several pupils, if not more, within their school. I’ve heard of everything from pyjamas days, sky dives, videos, poems and various hashtags circulating, all in the name of ‘autism awareness.’ I’m not against any of this and in fact my own daughter asked me herself if she could do something this month to raise awareness of the very condition that she lives with. I encourage her self advocacy so I’m using my own Facebook page (https://m.facebook.com/Faithmummy1/) and my personal profile to share her daily photographs on her behalf, since at ten she isn’t even old enough for her own social media account.

However, I don’t allow my daughter access to social media at ten and even more so during the month of April. The reason for this is because not all autism awareness is helpful for her. Here are some examples:

1. When people say they ‘brought awareness’ when actually referring to meltdowns.

It’s very common for me to see statuses saying things like ‘well we sure brought some autism awareness at the restaurant today’ which really means their child causes a scene of some sort, most likely due to a meltdown. Now I have a non verbal son who also has significant learning difficulties and who is classed as severely autistic. Meltdowns are common place both in private and public. However, my daughter is also autistic and she doesn’t have private or public meltdowns. She does shutdown which is a very different experience altogether, though rarely would the general public even notice.

By referring to meltdowns as autism awareness we are reinforcing to the public that autism only looks one way: it is loud, disturbing, obvious and upsetting. This isn’t how autism is for my daughter, nor it is how it is for everyone. Awareness like this isn’t helping my daughter to be included, accepted or understood.

2. When awareness becomes about colour, logos and individual charities.

Autism awareness isn’t a brand. It has no set colour, image, logo nor it is exclusive to one charity. I have seen people fall out over the colour they change their profile pic to during April in the name of awareness. How is that helping people understand my daughter better? My daughter is unique, individual and original and as she herself tells me often ‘it’s ok to be different’. Yet during the month of April we expect everyone to bring awareness using the same colour, logos, or charities. When awareness highlights divisions and friction it shows the public that autism is disjointed, argumentative and oppositional. None of those reflect my daughter in any way.

3. When autism focuses solely on difficulties.

My daughter is very aware of her struggles, however, even at ten she will tell you that not all her struggles are due to autism. She struggles to find footwear to fit her narrow feet, which even she knows is about her physical stature and unrelated to her neurological differences. Unfortunately the very diagnostic criteria for autism talks about deficits which makes explaining what autism even is quite difficult without being overly negative. I freely admit that when my son was diagnosed I did mourn and see his autism as a tragedy. As I learnt more, understood him better and learn to communicate the way he understood I changed. Now I delight in telling random strangers when he is flapping, giggling and smiling at lifts that ‘this is due to autism. It bring him and so many others delight.’ My son has significant difficulties and will need life long care but the public can clearly see that without me having to share. What they may not know is how excited he gets about mashed potato or lifts or certain songs.

When we focus on the struggles we are telling the general public that autism is something awful to fear, some terrible condition that afflicts sufferers and something we should be looking to cure. If my daughter could read some of the things said in the name of awareness her self esteem would plummet, she would become very self conscious and her anxiety would soar. I’m trying to help her see herself as amazing, wonderful and clever and I’d love the world to see that about her too.

So how do we do bring awareness in a way that really helps children like my daughter?

I can’t tell anyone how best to bring awareness of something that might affect them in a very different way to how it affects me. Autism can be hard, it can come with meltdowns and it is healthy to have different opinions on organisations, colours and logos. However, one thing we all need to do is stop and think about the bigger picture: is what I am doing helping the public to understand, accept and include everyone with autism? Am I bringing a balance? Would my child be comfortable reading what I have written about the condition they live with?

My daughter is ten. She attends her local mainstream school and she not only knows she’s autistic but she loves sharing her own unique views with the world. She couldn’t care less what colour you chose or what organisations you support. She doesn’t want the public to just know about her struggles, nor does she want everyone to assume she will have public meltdowns.

She’s just quietly, respectfully bringing awareness in her own way, and showing that despite all the arguments and negativity there is a different, more peaceful, way to advocate and bring awareness.

Autism is a huge spectrum affecting people of all nationalities, races, religions, sexes and ages. It’s vital we raise awareness but we need to do so in a way that not only helps my daughter but the many millions of others like her too.

Here’s how she is bringing her own awareness by using photographs.

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When Something Isn’t Right And Your Child Can’t Tell You

It’s Monday morning and I’m trying to dress my non verbal ten year old while he screams at me and makes it abundantly clear that he isn’t wearing uniform today and he doesn’t want to go to school. I persevere, despite his protests, and remind him gently that ‘today is Monday. First school, then home’. I know he understands but he still clearly doesn’t want to go.

His transport arrives and with a LOT of persuasion he finally accepts the inevitable and off he goes to school.

Half an hour later here I am sitting drinking a cup of tea and secretly congratulating myself that I made it through another Monday morning and I got my son to school despite his protest.

But then, with my warm cuppa still in hand, I read this online and I gasp audibly.

https://www.heraldscotland.com/news/17510158.parents-kept-in-the-dark-over-teacher-struck-of-for-force-feeding-toast-to-autistic-boy-at-south-lanarkshire-primary/

What if my non verbal son was trying to tell me something wasn’t right this morning and I didn’t listen?

This story hit home because I know of the school, but even more personally I know one of the families. The cover pic above was a picture that appeared on my social media the day it happened. I cried the day I saw that pic, and years later reading what actually went on to cause the bruises, I am crying again. That child could have been mine…same age, same diagnosis, same location, both non verbal. I have used the photograph with full permission from the family, who quite rightly, want people to see the damage that was caused.

While the full story isn’t mine to tell what I can say is that even with obvious injuries, parents who were proactive and highly concerned, and professionals keen to support, it has taken four years to get this case to the point where the teacher has been struck off for six months. When the child came home from school looking like he did above both parents immediately knew something serious was going on, but when your child can’t communicate and doesn’t have the cognitive understanding or social ability to know when something isn’t right where do you start?

For years my friend faced every school morning the same way I did, and she too would remind her son ‘first school, then home.’ We are both, sadly, used to seeing our son’s struggle and we believe professionals and schools when they tell us ‘everything is fine’ and ‘our children are just wanting to stay home because it’s an easy option’, or ‘they are struggling with the transition or sensory difficulties’.

There was far more damage done than bruises to my friend’s son’s face. Four years later he is still on medication for anxiety and it took over two years to get him him to go into school happy again. It’s taken multiple amazing teachers and support assistants to undo the damage one teacher caused. The damage to the trust of the parents will last forever.

The abuse didn’t start the day the child came home covered in bruises. For months the child screamed and withdrew and refused school yet, just like I did this morning, they encouraged and persuaded their child to go anyway. The guilt of that can not be measured.

The authority may have apologised to the family but it has taken four years to get any sort of justice, though a six month suspension doesn’t feel like justice for what they went through. In that four years the family had no idea of the true extent of what went on until the case came to the general teaching council for consideration. Not only could their own child not communicate the full account, but those that could have told them chose not to until they finally heard in a courtroom four years after the event.

Children like my friend’s son, and my own son, are among the most vulnerable in society. They are transported to schools miles from home, unable to say if they are injured or even shouted at. When they have challenging behaviour we are told ‘it’s all part of their condition’ and when they don’t appear to want to go to school we are told to push them, cajole them and persuade them.

But what if something isn’t right and your child can’t tell you? What if your intuition tells you things are not all they seem?

My intuition told me this morning that my son had just enjoyed a weekend at home eating his favourite foods and watching what he wanted on YouTube and he didn’t want that to end. Despite my gut telling me he is ok at school there will always be that nagging feeling that perhaps everything isn’t as I hope it is.

I don’t ever share stories like this because I am not an advocate of spreading fear However, this goes way beyond that. There are lessons here for everyone.

1. Schools who are privileged to have our most vulnerable children need to make sure they have everything in place to safeguard them. Staff who whistleblow must be given protection. As parents we need to know there are adults who genuinely care for our babies.

2. Parents need to trust their own intuition. If something seems ‘off’ never dismiss it.

3. Parents must be listened to…by everyone. There is too much at stake not to.

4. Schools, authorities and investigators must stop hiding the truth from parents.

5. As a society we need to take the responsibility seriously for making sure the most vulnerable, especially those who can not communicate, are looked after. If you witness abuse report it, always.

I made some silly excuse today to drive the 14 miles to my sons school to unexpectedly call in. I just needed to do so for my peace of mind. I peeked into the class where he was smiling, engaged in an activity he was enjoying and the room was highly staffed.

He’s fine, but so many others aren’t.

If you have concerns that your child is being abused in any way, wether in school or anywhere else, speak up. Contact professionals involved with your child, contact the police, gather evidence and information and inform the management of the school immediately. Have everything in writing and find organisations who can support you.

It’s vital that cases like this are talked about ,though it must be stressed that things have now changed in the school concerned and the vast majority of people working with children like my son, and my friend’s son, are amazing and kind.

Sadly as a parent to a childI with high support needs who is non verbal I will always have that worry:

What if something isn’t right and my child can’t tell me?

With thanks to the family involved for their bravery in allowing their story to be shared.

The Importance Of Telling Your Autistic Loved Ones ‘Don’t Ever Change’.

The day my son was diagnosed autistic I broke my heart. He was almost four, had only just started walking, had no spoken language and he was very developmentally delayed. I wanted to do everything possible to ‘make him better.’ I wanted to change it all.

16 months later, in a different clinic, I took my daughter to be tested for autism too. I sat solemnly while the paediatrician and specialist speech therapist listed all the reasons they felt she too met the criteria for diagnosis. I didn’t cry but I did feel concerned about her future. I wanted to change the thought that she might struggle.

Five years later I sat in another room, in another city, with another speech therapist and a psychologist as my husband received his diagnosis. This time I wanted to change his past, prevent the years of misunderstanding and bullying and the subsequent depression it left him with.

It hasn’t been easy for me to accept and embrace the fact that, all except myself, my entire immediate family are all autistic. I can see looking back how I consumed myself with the need to help them communicate, help them socialise, and help them adapt to even the simplest of change. I was tying myself in knots and exhausting myself. In my attempt to help them I was inadvertently telling them they had to change.

Now it IS good to empower autistic people with the right tools and support to succeed in life. It IS right to encourage, help and teach them. But what we mustn’t do is force them to change the very being of who they are.

As my children grow and shine in their different ways, and my husband processes his own diagnosis, I am doing my best to help them embrace and celebrate their own uniqueness. I came across this simple post in a Facebook group posted by an autistic adult friend of mine called Joseph. His three words are what I want to say to my autistic loved ones.

‘Don’t ever change.’

Isaac won’t ever really understand what that means. His significant learning disabilities give him such a pure and simple outlook on life. While his care needs might be high the core things that bring him joy and pleasure are quite basic. He loves his food, his same bedtime stories every night, lifts (elevators), his bath routine, looking at photographs on my phone and soft play. I took him to soft play recently and watched with pride and overwhelming love as he flapped contentedly to himself unaware of anyone around him. He doesn’t care what anyone thinks of him, he lives each day like it’s the best day ever and he loves deeply. Why would I want to change any of that? He’s amazing exactly the way he is.

Naomi is at an age and developmental stage where she is much more aware of her differences. While her peers attend clubs and groups, play popular video games and play outside she is still happy to line up little plastic toys and immerse herself in her own make believe world. Her literal interpretation of language brings me so much joy as she, quite rightly, reminds me to say what I mean and not use ‘funny phrases’. Her thoughts on life astound me and her ability to empathise and care are incredible. Yes, she admits herself, that she finds some things harder than others but then she’s the first to tell me ‘everyone is different and we are all good at different things.’. She knows she has autism and she isn’t ashamed of it. She’s exactly who she was meant to be and any issues regarding that are for me to work through, not her. Would I really have wanted her any other way? She’s wonderful exactly as she is.

My husband’s autism looks very different to the children’s. He has spent his life trying to change and adapt, fit in, be included and be accepted. The world has tried to change him for over sixty years and as a result he felt ashamed, different, and stupid. Seeing the mental and physical scars he now lives with as a result of this makes me even more determined that our children need to feel loved, accepted and wanted for exactly who they are.

Therapies have their place. Strategies to support have their place. Teaching and practicing social skills have their place.

However we also need to teach our autistic loved ones that they are accepted, loved and amazing exactly as they are.

They need to hear the simple truth of these three words:

‘Don’t ever change’

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.

The Reasons I Don’t Like People (Thoughts from an autistic 9 year old)

Some people like lots of friends and team sports and doing lots of activities with others. I am not like that at all.

I quite like my own company. I don’t really like people at all to be honest.

I don’t like little babies. They make me felt helpless when they cry. When people cry it makes me feel very sad too and I want to cry so I want to stop them crying but they can’t tell me what they want so I can’t stop feeling sad. I also worry they might be sick. I hate sick. It makes me feel sick too. So I don’t like babies much, except maybe when they are sleeping or smiling or laughing but just a little bit.

I don’t like toddlers. They don’t understand personal space at all! They touch things that aren’t theirs and move things. They put things in their mouths and wander about and I can’t even cope with that. They don’t wait their turn, they try and do things that are dangerous and they throw tantrums when you say no. So I basically don’t like toddlers much. Plus they are still fragile and babies really but walk about like they are the boss which is so confusing! They look cute and makeup words but it doesn’t make up for the other stuff so I’m not a fan of toddlers at all.

I don’t like nursery kids or those who have just started school much either. They look at me like I am clever and follow me and copy me and I hate that! I hate being looked at. I hate other kids watching me. It’s like they think I am God or something. Just do your own thing please and leave me be. No you can’t play with me and no I don’t want to show you what I have. Just find other friends or go away. Don’t play football near me either or in parks. Balls are so dangerous in parks! See that age is so annoying!

I don’t like children my own age or a little older. The problem with that age is they notice my differences. They notice my brothers differences too and laugh at him. Thats so wrong and makes me cry.That’s all I want to say about that.

I don’t like teenagers. They don’t follow rules like they climb up slides you should slide down and show off to friends. They say naughty words and laugh at me and that is wrong. I can’t work them out much either as some times they can be really moody and grumpy and other times nice. Just be the same all the time please. Be the nice one actually.

Adults are not good too. They think they can boss children even when they are not my mum or dad. They shout, change rules, move things, walk over my stuff and sit beside me. They interrupt, have phones that they talk to all the time when I need them and forget my routines. It’s like they forget children even exist sometimes.

Old people are even worse. They talk when I am talking, touch me when I don’t want touched and ask me things that are personal like ‘awwww how old are you then?’ I mean what does it matter how old I am it’s not like you are buying me a birthday card is it?’ Plus they never have a clue about what I like and then just say ‘when I was your age…’ I hear that enough from my dad as it is! I know the world was black and white and flat and there used to not be iPads. I even learnt about Vikings and Romans at school but I live now so that’s what matters to me.

Another reasons I don’t like people is the fact we have people rules but it’s like everyone just forgets them. Isn’t there meant to be rules about who goes first? Some people just forget that queue rule all the time. Then there’s the talking rule thing. Mum says don’t speak to strangers but strangers speak to me when I am a stranger to them so they break the rule! Then I get told off for not replying…ahem…they broke the stranger people rule first not me! Then there’s the truth rule. Aren’t people meant to tell the truth? Even children break that one sometimes and I am like what? That didn’t happen like that why are you making that up? Remember imagination and make believe are for stories people not real life. Tell the truth. That’s the rule.

There is so many rules I wish people lived by that would maybe make me like them more. I’m just going to tell you them because this is my story and the rules say I can say what I want in my own story. So:

Give me space

Give me time

Give me peace

Don’t touch my things

Let me finish talking, writing, watching, listening or whatever else first before interrupting me.

Never laugh at me

Don’t stare at me, copy me or point at me

Don’t touch me

Don’t hurt me

Just let me be me and I’ll let you be you.

Then it doesn’t matter if I don’t like people because we can just do our own thing anyway.

That’s exactly how I like it actually.

The end.

Why I No Longer Tell People My Children Have Autism (even though they do)

I always thought I was a proud ‘autism mum’, unashamed of my children and spreading autism awareness wherever we went. It turns out I have actually been harming my children, and the autism community, without even realising it.

Let me explain.

It’s the school summer holidays and both my children are autistic. One of my children has severe autism. He has also recently been diagnosed with epilepsy. At 9 he has no spoken language so he often screams. He chews his cuddly toys, flaps, spins, claps and makes repetitive noises. His twin sister has anxiety, is selective mute, freezes if someone talks to her or even looks at her and is very much in her own imaginary world.

Yesterday I took them out ten pin bowling followed by a trip to a well known fast food restaurant.

When we arrived at bowling, despite pre-booking the lane online to save waiting, there was still a queue. My daughter panicked and became anxious and distressed, asking a million questions over and over again

‘What if it’s too busy mum and we can’t play?’

‘What if all the lanes are broken and we need to go home?’

‘What if there are no staff because they are all sick?’

‘What number lane did you book because I can see people on lanes and they might be on our one…’

And so on.

Meanwhile her brother was wandering, flapping, chewing the nose of his teddy and otherwise just acting happy and excited in line with his developmental age of around 18 months or younger.

This time last year I would have not stopped talking. In fact I would have been similar to my daughter who was saying so much out of sheer anxiety. Except my anxiety was different as I was much more socially aware and I felt I had to ‘explain’ my children’s unusual behaviours. I would have turned to the strangers behind me and said something about how both children have autism and find waiting difficult and my son can’t speak. Even if they were not even looking at the children or even bothered by them in any way I still told them anyway! I then would have made a big deal of announcing to the person at the counter how the children had autism and global delay and my son could not speak and this and that and…well more than she or anyone else actually needed to know!

I truly thought I was helping. I thought I was explaining behaviours and educating strangers. I believed I was spreading ‘autism awareness’.

Actually what I was doing was embarrassing my children, portraying autism as something that needed excusing or apologising for and exposing my vulnerable children to the world. Would I have felt the need to broadcast my children’s difficulties if they had been wheelchair users? Would I have shouted it to the world if they had a hidden genetic condition or a medical condition like diabetes? Yes my children were noticeably different but by mentioning that fact I was actually drawing MORE attention to it and not less. My anxiety was making things worse.

This year things are different. Naomi is asking question after question, Isaac is flapping, wandering away and chewing his teddies. They are openly different.

But now I keep quiet.

Now I no longer tell strangers my children have autism even though they do.

I am not ashamed of my children, neither am I embarrassed. Never. Not even for a second. In fact I accept them totally and wholeheartedly for who they are. That is why I stay quiet.

My children deserve respect and privacy. Society should accept them without any justification.They should not be accepted because ‘they have autism’ but because they are wonderful, beautiful and unique just like everyone else in life.

So yesterday we were issued a lane (number 19 if you really need to know) and I supported my precious children to take turns, use a support frame to push balls down the lane, and to watch excitedly as pins fell down (much more often when they rolled than when I did!). No-one stared, no-one asked questions or even really cared about us much and I never once told anyone my children have autism.

When we had had our ten games I helped them into the car and I drove to the nearby well known restaurant. I ordered nuggets and one ate just the skins and drank only milk while the other licked the table as well as his food! Still I never once mentioned autism to anyone. Both children clapped, flapped and made baby noises. I still never mentioned autism.

My children haven’t changed. I have.

Last night I apologised to both my children. I can’t say how much either of them understand how my own anxiety caused me to feel I had to tell the world about their diagnosis when in fact it was no-one else’s business. If THEY wish to tell someone about their own autism (I understand my son is likely to never reach this stage due to lack of spoken language and severe learning difficulties but he still deserves the same respect and I treat him as if he does understand anyway) one day that is THEIR choice. If my daughter (or son) wanted to wear clothing stating they had autism again that would be their choice.

But until then I have no right to disclose their diagnosis to complete strangers just because I feel the need to justify and explain their behaviours. Everyone is different and we should all just accept that without explanation or labels.

I am learning. I am not anxious anymore. So I no longer tell people my children have autism even though it is obvious they do.

It is making for a much more relaxed life for everyone.

P.s. They both beat me at bowling…I wonder how I would feel if they told everyone I was rubbish at bowling…

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.