“Cameron do you think I’m a good mum? Do I make you happy?”

“You are the BEST mum I have ever been born from! – I love you”

I have many moments as a parent where I feel that I fail, that I am not enough or that I neglect my child.

The above comment though made my heart burst!

We are full time working parents and the normal hustle and bustle of everyday life makes me feel often that the weeks, months and years are passing me by.

My son will be going into his last year of primary come September and the memory of his first day at reception seems like a few moments ago.

During a working week by the time we are home in the evening I greet my child, ask about his day which is always minimal conversation on his part.

From there I must check his journal as during this year at school he has been struggling with some aspects of his behaviour and in order to address this I have been asking for a daily update.

This is a really challenging task emotionally for the both of us, Cameron is high functioning and conforms extremely well so I am quite firm with him that some of the things he has been reported as doing (ie: banging his pencil on the table or huffing when he is asked to do a piece of work he doesn’t want to) – are not acceptable and I will not tolerate them.

He knows that his evening treat or electronic device time will be in jeopardy.

It is difficult because I want to make him aware of his actions and that they have consequences but then on the flip side I feel that these are the by-product of his condition the few precious hours of the evening we have as a family are then tainted as I must discipline my child.

Something happened last week that gave me mixed emotions.

We have just been on a two-week holiday to Corfu, private villa where Cameron could be his loud quirky self and pure 24/7 family time.

When we returned home, Cameron said to his grandma “mammar you know what, I was pleasantly surprised on holiday – I thought my mum would tell me to use my inside voice a lot more than she usually does but she was really calm and hardly said it at all!”

Initially I was sad that my son must think I shush him a lot or get on at him for being quieter and using his inside voice, and the fact that he actually noticed I was more calm and relaxed.

I do not give him enough credit in the emotions and body language that he picks up on, when I have thought for so long with his autism it was one of his areas of weakness.

It made me so happy thought to know that he enjoyed our holiday and family time, that he felt relaxed and that he could just be himself – ultimately though that he felt that I was relaxed which in turn will have made him more at ease.

I know that there is not a manual and 10 years into being a parent, I myself am still learning everyday.

We need to be not so hard on ourselves because our children love us and happy children equal happy homes.

This is probably a sound all too familiar from children’s bedrooms up and down the country.

Bedrooms with young children or living rooms or back seats of cars!! Technology is now more accessible and mobile than ever before and this is not a fad or trend that will go away.

As a nation, we are all too dependent now on technology and it’s embedded in literally all that we do.

I had an issue with my WI-FI at home and for 2 hours literally nothing worked, the sky box couldn’t function without it and my 9 year old didn’t know what was happening like it was “end of days”.

“CAMERON – you are so lucky, there was no internet when I was your age”………. Cue the blank expression, the lack of understanding in his eyes and me feeling older than ever.

You see as a child with autism, my son’s world in his mind is very black and white – there are no murky areas of grey.

Realistically though there are more grey areas than black or white.

My son plays Roblox as do all his friends.

I was very worried about allowing this application on his computer and there were measures I had to take initially to safeguard my son.

Firstly, I purchased and installed on his laptop “Kaspersky Safe Kids” it helps you mentor your kids on device usage time and guide them on safety – so they only access the types of website, content & apps you decide are appropriate.

You’ll also get expert advice – from psychologists – to help you explain security issues to your kids.

I told Cameron that under NO CIRCUMSTANCES was he to chat to anyone online, as soon as any chat boxes pop up I want to check out if it is his school friends.

Everything was fine and he was shouting at me periodically to check the chat boxes which were all above board and innocent.

Then I got a message in my son’s journal from school which stated,

“Cameron has advised us today in RE that he has 200 friends on the Robox platform and does not understand the safety issues with this.”

I WAS MORTIFIED.

I penned a defensive reply to his teacher explaining that his internet usage is monitored and he knows not to chat to anyone online or tell anyone his name and personal details, furthermore that my job role entails parts of cybercrime investigations so as a family we were quite savvy.

I once told him that he could not talk to strangers – he replied “well If I ask them their name and tell them mine, they won’t be a stranger”!!

Yes this is true but not how it works.

I asked Cameron why did he have so many friends online……. Cue his logical reply: “mum, you told me not to chat to people you did not say I could not add people as friends!” – and this was true!

I sat him down to explain that he does not need all these friends in order to play his game and that I wanted him to go through and remove all the people that he does not personally know.

There was confusion and he felt like he had done something wrong and was upset that he now only has 9 friends.

As a child with SEN who is high functioning, so can understand to a degree what his friends are into and when he feels he is missing out.

This is now my grey area you see, to be able to give him some trust and confidence to grow but to protect him from a world that too be honest even I don’t fully understand.

I always refer to us as “My big fat Greek family”, we are in each other’s pockets, knowing each other’s business.

We do not go a day without checking in with the granny and all have front doors where there is never a need to knock – we have households where you are not a visitor or guest and you can make your own drink and help yourself to anything in the fridge.

Matriarch Mammar (grandma) – the head of our family and the woman whom without we would not exist.

She provides love, warmth, encouragement, criticism and always makes sure our belly’s are full.

She also as a practising Greek Orthodox Church goer, always makes sure we are anointed with holy oil and have a thousand blessing before leaving her house.

My mama – there is not a fiercer woman I know; witty, humorous, strong willed and the one who no matter how old we all get can still give you the “mum look” to bring you back in check.

My siblings – ranging in age gaps from 18 months to 10 years between one another, we all have our own unique personalities.

We can be best friends or worst enemies at any given point but will all congregate for a lecture off mum and some macaroni cheese when summoned.

Last but not by any means least – My husband, the person who is my best friend; my rock, who gets my quirky strange ways and who wholeheartedly loves, encourages and supports me in anything and everything I want to do……… even knocking down random walls in our house unplanned of a Saturday afternoon!

Who never questions my decisions or if he does question them, will do this with the upmost respect or (more often than not) humour before going along with my original plan!

Who offers pure love and appreciation of everything I do as a wife and mother and will sing my praises to anyone who will listen.

We are also a multiplex family and between us have a handful of children on the SEN spectrum.

We share our experiences and each situation and hardship helps us grow and learn for the next person to be able to make the necessary improvements, so come their turn the process is not as daunting or stressful.

We cry together, share burdens and reassure one another when we are trying to mend a hurting heart.

I think the key to maintaining healthy relationships is love and respect.

We will not all always see eye to eye or even get on all of the time and that’s fine so there also needs to be a lot of acceptance and forgiveness.

We can get through anything if we are as one, work as a collective and instil the values we practice onto our children for the next generation.

Family are those that accept you at your strongest and support you at your weakest.

The ones that you only have to look at them in a certain way and they know that you are struggling and need their love and guidance.

Not everyone is fortunate to have these relationships or family – I am and so grateful!

I like to think of us like Liquorice All Sorts – all a bit different; a few misshapen, or may seem even broken – they are not, they are just a bit different.

All of us go through difficult times and there are occasions when we need additional support.

I feel that society for years expected people to learn to cope with the complexity of a world which can often appear to them as bewildering and irrational as “mental health” was a taboo subject.

I want people to feel comfortable in their skin, to know what they are feeling is common and that even if they are dismissed or overlooked by the strained NHS service that there are other people who will listen, offer a helping hand and direct them in alternate routes to get the right help.

I have first-hand experience with mental health issues with having periodically suffered from anxiety.

I learnt a lot during my own journey, the main thing was accepting that anxiety is a mental health condition and how people who are fully functioning and successful can be effected.

I have an autistic 10-year-old and it’s my journey as a mother that triggered a lot of my darkest thoughts and worries.

I have found that since blogging for FireFly and sharing my blogs on social media, I often receive queries from friends/friends of friends for advice and support and they are always relieved and grateful for someone to interact and confide in.

In some instances, I think they find it easier asking questions to someone unknown to them and outside of the equation.

I understand that getting people to trust and open up to people they don’t know, or similarly to feel comfortable speaking to people who they love is challenging.

What works for one person is not the remedy for another.

I also appreciate that there are people want help but are reluctant to take the advice and recommendations suggested too them and this can be painful when you are trying to support someone you care for.

Emotional wellbeing and mental health in young autistic people is often overlooked as many of their symptoms could appear “typical” of the condition itself.

OCD and depression being other mental health conditions that end up being pushed to one side as people are unaware that they are conditions and that support is available.

I have previously attended parenting seminars to build up my knowledge as well as online learning courses, as now my son will be approaching his teenage years I want to be armed with the best knowledge so I can support and help him understand this challenging time.

I have started laying the foundations and talking about mental health at home; teaching that we can all have thoughts and worries and we need to be open and talk about these, so as a family we can all support each other.  After all; if I don’t know what’s troubling him, I can’t help him.

“mum, can I just say that the reason I love you so much is because you have an answer for everything and you can solve every problem……”

This was a comment out of the blue after tea one evening and not in relation to any type of “talk”, it shows me though that hes understanding in his own what that I can help him.

I won’t always have the answers or solve all his problems, but in order to help his mental health I will use every fibre of my soul.

Mental Health is not something we can “fix” or reduce the numbers.

It’s a fact of our society and we need to embrace this.

I hope people reading this are encouraged not to feel afraid and to confide in somebody.

I used the word TEND excessively in this paragraph as it is not always the case.

What about when there is no visual aid though, what about when a person’s condition is quite complex that even the doctors are not quite sure, or not willing to diagnose?

What happens then?………. Let me tell you.

I am not a fan of “labels” or “diagnosis” but these are paramount for the healing process as a parent.

To have an actual diagnosis allows you to research and arm yourself with all the knowledge good or bad to be able to move forward with this new journey you have found yourself in.

I have a son who is diagnosed with autism spectrum disorder (ASD) and congenital stationary night blindness (CSNB).

Now apart from his glasses, both of these conditions do not offer any other visuals that you would identify why he acts in a certain way or says inappropriate things.

You would think he is a rude and maybe a disobedient child, I know you would think this, as I have heard these comments before.

Once I tell you he has autism though, your face will change and your attitude towards him will become more accepting.

Now think about this in the next situation, the only difference being that the child I am about to talk about was born six years after my own.

During this time; government changes and cuts mean he is in a state of limbo as are many other children in his situation, who are no longer being given the diagnosis they deserve and need.

My nephew Leo is different to his brother Alex and Cameron (both ASD), He’s a polar opposite in fact, and if you were to describe him – he’s a Tasmanian devil.

He wreaks havoc wherever he goes, he thrill seeks but dangerously, he is unable to remain still even in his sleep, will often harm others and pets whilst playing as he does not know his own strength, his own pain threshold is unusually tolerant, has a constant need to touch people or textiles, does not conform, cannot sit still to engage in the school environment.

He was dismissed by the professionals as being too young to diagnose or assess and now 12 months on school are trying to schedule behaviour assessments to back up their concerns and send him back through the healthcare system for the second time.

Their hands are tied because they know that without a diagnosis – they are limited in the resources then can allocate to him for support.

This is a trying time for his mum, who is doing her absolute best and trying to go forward and get the best support she can from school without the back up of a label to make this easier.

This is draining as a family where the other children are fearful of Leo and isolate him as he is just too rough, where family days out are an endurance test for everyone around and the unhelpful judgemental eyes of onlookers.

Remember though “there’s nothing officially wrong!” – there’s no diagnosis!

Most of all though, this is mentally exhausting for Leo as a four-year-old in a world that is already daunting enough, to actually not be able to have that “break” that the comfort and security a diagnosis provides.

How much he feels day-in, day-out – being told “don’t do that – stop – why!”, when we all know he cannot physically help it – it’s his condition, the one currently with no name.

We second guess ourselves, our family skills, our relationships and its draining.

We are a strong family and luckily can do this together – I’m sure many would struggle.

We live in hope and love.

I can feel the vice-like panic calming inside my body, my heart rate is returning to normal and all whilst I’m thinking what can I make for tea tonight now that I forgot to take the chicken out of the freezer this morning.

You see, with anxiety there is no specific event or logical reason as to why an attack will suddenly decide to take a hold of you.

I became much more stressed as a person when my son’s hospital appointments and assessments increased pre his ASD assessment.

That was five years ago now and I feel that since then although I cope exceptionally well, I just continuously run at a slightly increased level of stress.

Stress is sometimes good though, I figured out early on that it motivated me and empowered me to fight for what my son needed and achieve my parenting goals.

Although maintaining the level of stress quickly burnt me out and brought on the anxiety.

Although stressful – I used to be elated with each milestone we achieved as a family; eating new foods, successful family days out, moving into the next reading group, a full night’s sleep etc.

I use to think that we had “cracked it”, only to realise that subsequent challenges we faced were now just different challenges not more or less.

So, the stress continued.

I tried spa days; but found this made me worse as all I could think about amongst the meditation music and scented candles was if my son was behaving in my absence, with it being a change in his routine.

I tried self-help apps for meditation and relaxation; and although these worked to a degree, I found it hard to follow the “imagine this scenario” being spoken about as my mind was wondering in every which direction and covering “what-if’s”!!

Recently in the organisation I work for there was an opportunity to complete a Mental Health First Aider (MHFA) course, to become part of a support network for people struggling with their own mental health.

I made it onto one of the 16 places from 200 applicants and the course was such an eye opener into the reality that everyone has inner demons; some bigger – some smaller, but demons none the less and everyone has their own cross to bear.

I was taught techniques to identify people in need and given tools to be able to guide them to appropriate support.

I found in doing this course; being in this environment and sharing my personal anguish and deepest concerns and experiences with total strangers really cathartic.

I realised in that moment that I’m lucky through blogging I get to share and vent a lot with the world and for me this is my coping strategy.

It’s a way for me to get down all my thoughts, worries and even hopes.

I remember after my first few blogs my husband said to me that up until that point he had never realised how hurt and affected I had been from our son’s diagnosis, I realised that I never shared the load with him and this is what had led to my stress and anxiety.

Bottling up the emotions does not work and is not healthy, yes we all deal with stress and that’s everyday life but we cannot let this rule or consume us.

It’s important to identify what our own triggers are and try to take preventative steps before our health and wellbeing is affected.

By recognising our triggers, we can try to embrace and control the situation.