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ADHD….

The day I had long anticipated and dreaded came and went.

All three of my beautiful children now have a diagnosis for a nuerodevelopmental condition.

My middle child was diagnosed with ADHD two weeks ago.

I am so angry for her.  Angry because she was born with ADHD yet for years anything and everything else has been blamed for her struggles except what was so obvious.

The phrase “people see what they want to see” has never rung truer. Or stung so much.

My child would have been diagnosed years ago if their school had backed us up.  School frequently complained about her challenging behaviour yet when given questionnaires from CAMHS ( Children’s And Adolescent Mental Health Service) schools answers and our own didn’t tally.

Diagnosis is not about a label.  That is something I want to make very clear.

My child is my child and is very much loved exactly they way they are.  We have no desire to see her change.

All I have ever wanted is to understand and help her.

We first asked whether my child might have ADHD seven years ago.  My child ticked all the boxes in our minds from a very early age.

Please stop and consider how much my child has suffered and lost because all those years ago no diagnosis was reached.

My child has lost out on years of specialist support.  She has struggled alone, the huge toll of this is very evident on her mental health.

My child has struggled severely with concentration, she has lost out on years of schooling and learning. She doesn’t realise how smart she is because she measures herself against neurotypical peers who have not faced nor ever will face the battles she has.

My child has lost several friendships because her impulsive disruptive behaviour was seen as delinquent, she was seen as trouble and to be avoided.  No one supported her or tried to understand.

The cost of a late diagnosis will likely effect my daughter for the rest of her life.  The damage done is so deep and raw.  My child believes they are worthless, that there is no point in trying.  My child thinks she is broken and that this is somehow her fault.

I saw the questionnaires results this time from both home and my child’s new school it was heartbreaking to see just how off the scale my child scored in both settings.  It is not like you could understand previous discrepancies because there was only minimal meeting the threshold.  Right across the board even on the questionnaires my child filled in her difficulties were off the scale.

The further heartbreaking element to all this is ADHD is likely only the tip of the iceberg for my middle child.  There is and has always been strong evidence of further neurodevelopmental conditions being present too, again no formal assessments were carried out previously because school didn’t back us up.

Schools appear to sit in a position of tremendous power over vulnerable families and children effectively acting as judge, jury and executioner in the lives of the young people they are meant to be enhancing.

Sadly I know we are not the exception.  Many families fight the same battles day in day out.  Something I do notice though is girls definitely are suffering far more because there is an assumption the neurodevelopmental conditions such as ADHD and ASD are seen as problems associated more with boys.

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A letter to my child’s teachers …..

Dear teacher,

I am writing to tell you about my child.  I want to tell you more about her,  in the hope you will go the extra miles she is going to need from you.

My child is beautiful, kind, creative, smart and funny.  When everything is right in her world she is bubbly and happy, a light shines in her eyes.

My child is very caring and nurturing especially to others with additional needs or children younger than herself.

My child is also about to be possibly one of the biggest challenges  you will face in your teaching career.  That is if you choose to fight for her.

You are lucky,  you have a choice in all this my child doesn’t.

Many others who have come before you have chosen to exclude her.  They take the easy way out.

I do understand why teachers exclude her.

You see my child suffers from crippling anxiety that manifests itself as motor and oral tics and behaviour that is at its worst extremely challenging.   My child will shout and swear appearing very aggressive and intimidating  when anxious.  If you think of the exorcist film, that is the vision I saw playing in my head when I witnessed my child suffering at their worst.  It is frightening and heartbreaking  to watch especially if you don’t understand.

What you need to understand is first and foremost my child is just that a child.

You also need to understand they have no control over their anxiety or tics.  In fact my child is every bit as frightened as you maybe in these difficult moments.

In these difficult moments I need you to remember how much my child is suffering.

Can you even begin to imagine how terrifying it is to have no control over your body or voice even just for a few seconds?

My child can suffer tic attacks lasting hours.  These attack’s at their worst see my child struggle to sit on a chair, they cause her physical pain, they see her loose the ability to communicate what she wants to say,  she can’t get her words out for vocal tics, these often include outbursts of offensive language.

I beg you please to look past the anxiety and tics.

I beg you to be patient and kind to my child even in difficult moments.

Please, please don’t punish her for ticking.

Please don’t be yet another teacher who refused to have my child in their class.

My child is suffering far more through all of this than you could understand.

Everyday my child gives up a little bit more on life.  The sparkle in her eyes has been missing for months now.  In its place dark circles surround her eyes.

My child has stopped going to activities she enjoys.  My child comes home from school totally exhausted and broken day after day.

I am not sure how much longer she can carry on.  I am frightened for her future.

I don’t know how she carries on.  I went through my teenage years not knowing I am an Aspie.  They were the worst years of my life, they were lonely and frightening.  I didn’t have to cope with tics though.  I was fully prepared for my child’s teenage years to be turbulent.  The tics are a whole other kind of living hell neither myself or my child anticipated.

We have begged Child and Adolescent Mental Health Services for help.  We are still waiting.  My child’s current ongoing crisis appears not desperate enough for intervention or support from them.  I am so frustrated with this.  My child doesn’t understand why no one will help her.  She doesn’t understand why she is left to suffer.

My child frequently tells us she wishes she was dead.

My biggest fear is this is how she really feels and it is not simply a teenage over dramatic statement.

We suspect and have done for a long time my child has at least one undiagnosed nurodevelopmental disorder, we believe this the root cause of the extreme anxiety she battles constantly with.  My child is an adept masker though and only those that really know her get to see the tell tale signs that something more is going on underneath it all.

This means my child needs you to be very direct with her.

My child needs you to be firm but fair.

My child needs you to be predictable.

In being these things your behaviour will offer my child reassurance, you will calm her anxiety.

Please also remember my child’s peers will be watching you closely, observing how you treat her.  If you model patience and understanding for them they may demonstrate the same patience and understanding to my child.

Those who have given my child their time, patience and understanding have seen my child learn to relax.  They will be rewarded for their efforts by seeing my child thrive.

My child is fighting several invisible battles every moment of every day.  These are battles against sensory issues, communication difficulties, processing and memory issues.

Please don’t be another battle for her.

I am asking you to please fight for her and not against her.

Yours sincerely,

A mother desperately trying to help their child.

 

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Confusion….

I wrote but never shared this blog post months ago.  I didn’t publish it because I didn’t want to be laughed at. I am publishing now because this is what it is really like for me and others with high functioning ASD.  It is how I am feeling and seeing the world.  I am not asking anyone to feel sorry for me, far from it. I am simply reflecting on having tried and failed at being a social butterfly and I am actually o.k with the thought of retreating to the safety and comfort of my own little world.  This is a mask off account.

Right now I am feeling so confused by social relationships I am seriously thinking of giving up trying!

Does anyone else find relationships with others totally confusing?

Half the time I feel I am speaking the same language as everyone else the other half I may as well be talking in some foreign language.

The picture in my mind is of me scratching my head and looking lost.

I am really confused, totally and utterly in particular about friendships.

Now I see me hugging someone I think might be a friend.

The thing is friends stopped trying to hug me many years ago, I am sure my startled rabbit in the headlights look is to blame, I would really like my friends to hug me, it is not the actual hug that startles, it is the unexpectedness of their actions that sparks fear inside me. I am too unsure to initiate a hug with anyone outside my family.  It is the not knowing how they will react.  I tried this a few times recently and it didn’t go well, I tried to hug thoes I thought were friends on saying goodbye after spending time together. One friend, I like to think didn’t understand my intentions, just walked away, the other has been weird with me ever since!

I really don’t get it!  I watch others who are friends hug all the time!

Dictionary definition of friend: “a person who you know well and who you like a lot, but who is usually not a member of your family”

That definition doesn’t really help does it? I know lots of people well, who I really like and are not related to me but I know they don’t see me as a friend.  Even the ones I think are friends leave me baffled by their behaviour.

Are the people I communicate with through social media friends?

I am seriously thinking of quitting social media, one day someone talks to me via messenger the next they don’t or as I am often finding some only talk to me when they want something.  Once they get what they want they no longer want to talk to me.

In my head I am typing away on my iPad. Whilst looking bemused.

I like social media, well I thought I did, talking via text seems easier in many ways, plus you can talk to people anywhere in the world anytime of day or night. Share photos, stories, good times and bad.  The thing is I don’t tell people how I really feel, not very often anyway, they really would run a mile if I did.

I am now not sure social media is easier it is just as confusing in some ways more so because it is there in black and white, like, share comment or don’t, what does it all mean though?

I try to leave good comments because I know how much a small simple gesture can lift someone that is feeling low is it not social media etiquette to do the same in return?

For example a friend posts a photo, memory, quote or a tale of their day of something meaningful to them you respond by liking and leave a positive comment, don’t you?

Why don’t they do the same in return ?

 

In the real world the having friends and socialising is just as confusing…

The people in the playground that I talk too twice a day Monday to Friday?

The people I meet for a coffee?

Go on a day out with?

If someone is kind to you?

Thoes I am kind to?

Thoes I let in to my world and life?

Does anyone think of me as their friend in return?

I decided post diagnosis to try and increase my social circle, but without being somebody I am not, mask off, just being me, I like the idea of friends, having someone to share something with, it is lonely only having immediate family to talk to, lets face it there are somethings you can’t discuss with your mum, gran, husband and children.

It is all so very confusing and frustrating, I have a few people, I think might be friends, but one day we are meeting for a coffee or going for a walk, the next my messages are being ignored?

I am in this situation right now and I don’t have a clue where I have gone wrong. Nor do I know how to improve the situation.  I feel like retreating and putting the barriers back up.  I am just as lonely as before only now I am totally confused, hurt and bemused too.

Did I scare them off?

Where did I go wrong this time?

Maybe I bore them or confuse them with my randomness…..

I actually wish they would just tell me.  Maybe then I could learn.

I wish I had the courage to ask!

I never know what to say to someone which is funny because I am known for being very talkative. I live in a house with two other chatty people with ASD, they too seem to never know what to say.  The thing is when I talk at a thousand miles an hour, it is because I am so anxious and nervous and scared all in one go and the words just race away from me, usually I am not making much sense in these moments either.

The picture in my mind is words lined up on a running field waiting for the next race to begin.

Maybe that is where I went wrong?

Maybe I tried too hard?

As I mentioned previously the things I desperately want to say don’t ever want to come out, or come out totally wrong, the words just gather in my head, getting bigger and bigger until I have to put on the really loud music or walk for miles to calm my busy brain. Or they all flow out completely wrong.  Wrong order, sometimes the words are all jumbled up so don’t make sense even as words, just wrong.

I try so hard to ask reciprocal questions and to listen and follow other people’s answers, and I thought I was doing o.k but now not so, maybe they think I am not interested or not listening because I can’t sustain eye contact?  Or because I did or didn’t probe further?

It is really useless suddenly thinking of a question you would like to ask about something you have been talking with someone about several hours later due to it taking my brain that long to process all the information.  So I just don’t ask. Latterly I tried asking later when my head catches up, that didn’t help either.

You have no idea how hard this social stuff is!

I feel like I am living in a world where the majority of people know all the rules and I only know some of them! No matter how hard I observe others I still can’t learn the rules.

I always end up telling those I want to be friends with all my worst bits because I would rather they walk away now than build a relationship then have them realise they don’t like the real me, or they realise I am different.

The pictures in my mind show someone walking away and a building collapsing.

They never share things with me or come to me in times of need.  I can be calm in a crisis.  I would love to help someone else out.  I frequently make gestures such as random acts of kindness but I fear they overwhelm the recipient, and that scares them away too!

In my mind I see a recipient of a box of chocolates looking bemused at the gesture.

I have come so close to accctualy saying to someone “are you my friend?” But oh how desperate would that look?

I actually wouldn’t mind if someone said no because then at least I would know where I stand!

Life would be so much simpler if I could just be happy being lonely……

 

I am starting to believe I was happier in my own small world.

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Nurture, Nurture, Nurture….

Nurture by definition means to care for and protect (someone or something) while they are growing.

Everyone everywhere ‘grows’ through life, we grow in many different ways, height, strength, character and ability are a few examples of growth we experience.  We all require and benefit from nurturing, we all need care and protection.

One of my little people is having quite a tough time at present.  Recently I have been pushed to my limits, in the last week I have felt, overwhelmed, exhausted and at times alone.  In my last post I lost my way… I wrote about how I forgot briefly the guidance I try to keep at the forefront of everything I do as a parent to three little people with differing additional needs…

“The children who need love the most will always ask for it in the most unloving ways”

When a child has a neurodevelopmental condition such as Autism Spectrum Disorder (ASD) or Attention Deficit Hyperactivity Disorder (ADHD) they in my experience have significant difficulties in communicating effectively their needs and concerns for example, the need for help when something is wrong, the need to share a concern with another.  It took myself well into my teenage years and early twenties to be able to actually ask someone verbally for help, sometimes I didn’t know what I needed I just knew everything felt wrong.  It is really difficult to explain and put into words.  I have always been verbally able as have my children but we all struggle significantly with communicating feelings in particular and needs.

Due to the difficulties in communicating experienced by these children, often the need for your help, your time and your love will be asked for in the most unobvious, disruptive and challenging of  ways.  I was always in trouble as a child.  Always for being disruptive or lashing out, I was renowned for throwing the nearest thing to me before bolting out the nearest door chairs, tables anything in my path got launched!  I could never explain why I behaved this way.  With reflection as an adult on nearly all occasions what I wanted was someone to help me with something.

Behaviour is communication, what is extremely difficult when working with, supporting and living with Spectrum children is the behaviour being displayed often communicates totally the wrong message.  Leading to very confused and frustrated parents/carers and often as equally confused and frustrated children!  Even though I have experienced as a child and still do experience difficulties communicating now I am an adult.  As a parent I am often left bemused scratching my head in desperate search of answers.  I always try to remember though my behaviour was often interpreted as aggressive or confrontational, when I am neither of these things, I just wanted a path away from the overwhelming feelings of frustration and anger at not knowing what to do in a situation.

The answer is simple but oh so complicated as a parent what I need to do to help my children is nurture, nurture, nurture and even more nurture!  As a child what I needed was to be nurtured.  What I often received was punishment on top of punishment, it got to the point I was trapped in a negative cycle, it has taken decades to undo the damage that caused.

It is logical, children with Spectrum conditions as little people almost have to ‘grow’ much, much more and for a much longer timeframe than neurotypical children to compensate for and overcome the difficulties their conditions create for them.  Some will have to find altogether completely different ways to communicate if non verbal.  I still think of my own brain as a computer running a different operating system to others, if I am a Mac they are a Windows PC! I am constantly reprogramming my brain to be compatible with the wider world.  I watch my own children doing exactly the same things.  One advantage of having been there, done that and owning many, many t-shirts of experience is I can sometimes offer the right guidance to my children in how to overcome a situation, instead of leaving them to spend months as I did trying to puzzle out the right answers or solution.

My little person who is struggling has been indicating for sometime through increasingly difficult behaviour that something in their world was very wrong.  In the last few weeks we have experienced from this child the need to be very controlling around food, clothing and personal hygiene routines, we see this controlling behaviour emerge when they feel other things in their life such as friendships, school and events are overwhelming and out-with their control.

One big issue for my child has been for many years their additional needs were severely misunderstood, this has caused significant damage to an already fragile self esteem and left them very untrusting of adult professionals.

As parents we have been on the receiving end of some really awful verbal insults from this child.  This child’s tolerance towards their siblings has been extremely low, resulting in far more moments of conflict than are the norm.  This child has re raised their barriers and is currently firmly entrenched behind them.  They are well and truly pushing everyone away.

I feel we have been riding this current storm for endless weeks with little let up.

I always try to remember though that, whilst yes it is tough for everyone around my little person, it is 100 percent harder for them caught in the midst of it all.  Right now they are stuck in what is an overwhelming confusion of emotions and feelings they can’t make sense of.

Their behaviour is communicating to me something is far wrong.  This is where the mantra “pick your battles” comes in I never shout, I totally ignore the insults, my little person is struggling, what good will come of shouting at them or humiliating them?

I have been criticised on occasion for not using punitive consequences for challenging behaviour.  I know from bitter experience that often my child will punish themselves far harder for their mistakes especially the ones that seem obviously avoidable to others or for mistakes not learned from previously.  There are always consequences for all our actions and reactions, I feel it far more productive to impose as a consequence that my child and I sit down together and talk it through, this often involves them having to find the courage to talk about their feelings and accept they are ultimately responsible for their actions.  Let’s try and unpick where it all went wrong, let me help equip my child with the tools they need to try and avoid making the same mistakes again.

Once, not so long ago I can remember sitting in a meeting about my child’s totally out of control behaviour, being told they were choosing to behave this way that the only way forward was to be strict and firm with what others deemed meaningful consequences.  All that was achieved was a wedge was driven between my child and I, their self esteem, confidence and self belief dropped even further than I thought possible.  The imposed consequences of removing activities took away precious opportunities for my child to gain and practice their social skills and left them with absolutely no incentive to even try to behave!  My child and I at that time quite literally hated each other.  I for a short while bought into the theory their behaviour was their choice.  My child saw me as the bad guy.   I was parenting against my instincts.   I turned into my own parent something I had vowed on discovering I was pregnant for the first time all those years ago never ever to do.

Now whilst I am nowhere near a perfect parent my child and I now have a good relationship.  We talk a lot about anything and everything, sometimes I wish they would apply just a little bit of a filter, discussing sex education in the local supermarket was interesting.  My child will come to me and in a round about way try to ask for help with problems.  They know I won’t shout, they know I will listen, they know I will try to understand, they know I might not like what they have done but I will always try to help them through.

Nurturing at home is one thing but what Spectrum children need is nurturing in all environments including schools, communities and by wider society.  They need to stop being judged on the negative image conjured up from the stereotyping of their conditions.  So many jump straight to the conclusion a child with ADHD is bad, uneducable and a product of poor parenting.  I have suggested to my child they tell their peers they have ADHD, my child would rather have their peers believe they were trouble than explain the real reason they struggle.  My child knows society’s perception of   ADHD is unkind and ignorant, my child feels ADHD is something they should feel ashamed of.  ADHD just like ASD is a neurodevelopmental condition, there are physical and chemical differences within an ADHD brain responsible for the differences demonstrated through development and behaviour by those affected.  Spectrum children need patience, understanding, acceptance, love and celebrating, all three of my Spectrum children have unique talents all have huge potential to achieve great things, to do that though they will require nurturing in school, our community and society.

 

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I lost my way…

I frequently get told, “I don’t know how you do it!”

My reply has always been “I don’t know any other way”.

My three beautiful little people were all born neurodiverse, all with their own differing additional very different needs, it would take years for us to understand exactly what those needs meant.

Being an additional needs parent has thrown at me the hardest, loneliest, scariest moments of my life yet it has also provided the happiest, proudest and most rewarding experiences I have ever lived through.

Parenting additional needs children each with different needs calls for me to be a mum who thinks outside the box who remembers at all times which strategies work in the case of each child and to apply them consistently and appropriately.  All three of mine require a different approach from each other!  It would have been oh so much simpler if one set of rules applied to all!

I am not going to lie to you though, there are times where it is absolutely overwhelming, completely draining and I know a level of exhaustion only those walking the same road know of.

It has been a difficult few weeks for one of my little people.  School went back after Easter and it is like all the progress made the term before has been completely undone.  The situation escalated to the point the other day where both myself and the child concerned couldn’t stand being near each other.

My child shouted “I hate you”, “It’s all your fault”, “bitch” to name a few of the onslaught of insults I have had thrown at me in the last week each delivered with venom and hatred.

This child is still really struggling to come to terms with a diagnosis of ADHD.  I felt my child finally having a diagnosis a relief.  For years I have fought their corner that they were not “bad”, they weren’t “choosing” to behave the way they do.  For years I have argued something else was at play.  My child has demanded since the age of 9 to know why they are different.  At 13 we finally have an answer.  Having someone actually confirm you are different and can never be typical is huge.  It is frightening.  It hurts.

Receiving that news as a teenager I think especially hard because it is a time of exploring identity and gaining independence.  In some ways it brought more questions than answers.

It took me until I was 35 to ask my GP for an assessment although I had been sure for five years previous.  No one had ever asked her for an adult ASD assessment and she didn’t actually know what to do with me in terms of where to refer me to! A few months later it was confirmed I have what is formally referred to as Aspergers.  So I do know all to well how it feels even if it is the outcome you anticipated and expected.

Something I have personally struggled with since my child received their ADHD diagnosis is if they have it then so do I.  I say this because for years watching this child grow and make mistakes often the same ones over and over again is like looking at myself in a mirror from 25 years ago.  People used to joke there would only ever be one of me “they broke the mould when they made you” well they didn’t and now I am the mother to a child who appears destined for the same struggles I faced.

I am determined though with every fibre of my being they won’t suffer the same fate and pain I did.  I know how vulnerable my child is.  I know how much they need protection as much from themselves as they do from others.  I hope and pray everyday this is enough to get us through.

The legacy of my own teenage years still causes me so much pain, shame, regret and remorse, there are moments I would give anything to go back and do differently.  I would give anything to save my child the pain and hurt of similar experiences.

A book I have been reading about ADHD suggests it is like living a life with no inhibitions!   On reflection of my own life and now as a mother watching their child grow up with the same condition I agree entirely that is exactly what it is like!

ADHD means living very much in the present, you don’t foresee consequences in the future for your actions and you are unable to consider your past experiences to inform your understanding of a new situation. So it is a case of hold on tight and hope everything ends well!!!

This last week I have been taking the insults and challenging behaviours from my child personally.  I have become, frustrated, worn down and worn out.

The other day both my child and I hit rock bottom.

I forgot the single most important piece of guidance I always try to keep at the forefront in my mind, that being….

 

“The children who need love the most will always ask for it in the most unloving ways”

 

I lost my way.  I lost track of viewing  behaviour as communication.  For a brief moment I am ashamed to say I forgot it was the behaviours I didn’t like and not the child.

 

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Unemployable…

Statistics state only 4% of adults with an ASD diagnosis are in employment.

In the last six months I have applied for twenty five positions, had fifteen interviews and twenty four rejections!

In theory I am employed, I have a zero hours contract and since gaining that position six months ago I have had less hours than one weeks full time work over the full six months period!  Certainly nothing you could actually class as earning a living.

I am great at my job, I know that and on the odd occasions I get the opportunity to show others what I am capable of I get told I am a natural, and really good at what I do.  I have loved every second of the few hours of work I have been able to get.  Those precious few hours left me wanting more.

 

I am good at written applications.  That definitely isn’t an issue.

So why can’t I get a contract for regular hours?

That is the question I have been wracking my brain for weeks trying to answer.

I am good enough to fill in for staff that are off ill often at a moments notice but not good enough to do my job on a more frequent basis.  That is the message I am getting.

I know I totally screw up job interviews,  even donning my finest neurotypical mask can’t hide the fact I have a communication disorder and a very different brain to others.  I struggle with eye contact when anxious.

I can’t  hide my Aspie brain enough.

I say all the wrong things, can’t process the interviewers questions quickly enough or remember them long enough to answer properly.

Or totally miss understand the questions because I think too literally!

An example being…

”Why have you applied for the position?”

So I once actually gave the reply “because I want to model for my children the importance of working to break the cycle of poverty and unemployment my family have become trapped in, to show them that employment and hard work will give them a better life.”

My answer was true that is essentially what drives my ambition to have a decent job.  I want a better future for myself and my children.

What the potential employer wanted to hear though was why I was particularly suited to the position I had applied for.  A totally different answer altogether.

It is no use realising hours later what a particular question actually meant.

You see the problem?

In an attempt to combat these problems I decided to write prompt cards with all my strengths along with other points that come up frequently in interview questions in the area of employment  I want to work.  Plus examples I have of relevant experience.  All in my own words.

I though this a good idea.  It wasn’t.

I always ask for feedback from interviews, the last one, where I was brave enough to use my prompt cards said I needed to believe in myself more and apparently all of the few candidates the potential employer chose to interview were employable and suitable for the position but I was still unsuccessful.  They felt my responses were sometimes scripted.

The other regular feedback I get is I don’t have enough experience.

I have even been told I need to smile and not be so serious!

That last interview actually came close to breaking me and I mean really breaking me.  I felt I had done well.  I nearly didn’t go in the first place because I am so fed up of screwing it all up.  I had got to the point of seeing attending interviews as pointless.

I am a really positive person and the picture in my head kept telling me not to give up hope.

I don’t know how I can believe in myself more?

I pushed myself through three years of studying because I knew I could do it because I wanted to work in a particular area.  I apply for job vacancies because I believe not only can I do the position I would be one of the best.  I know I can do better than many already in the job.  I do believe in myself!

Some of my responses may have seemed scripted, I have twenty three screwed up interviews for experience, where I later find myself frustrated at some of the stupid things I have said, if sticking to a script actually gets me through then why is that wrong?

As for experience I have over seventeen years plus related relevant qualifications.

On needing to smile, you try remembering to smile when you are trying to follow and process questions, not screw up answers and trying to make some eye contact.

 

Every time the hardest part is explaining to my children I didn’t get that job.

I preach to them about studying hard to get a good job yet can’t prove it to them.

One of my children asked if it is because I have ASD.  I told them of course not, it is just a case of I wasn’t the right person this time.

 

I can’t keep putting myself through this.  It is so stressful and exhausting.  It is soul destroying.

No matter how far I come it is never enough.

Every rejection leaves me feeling like something inside me has died, my internal light dims every time.

I cried through a full box of tissues and wanted to hide away from the world forever that last time.

 

Hiding didn’t work for long I had to put on my brave face and attend a child review meeting that same afternoon, I struggled through the meeting, trying to hide my feelings, I have no idea how that child is getting on at school, my brain was too shutdown to take anything in properly.

 

I have decided I am not applying for any other jobs.  Not for a long time.  Even the picture of hope in my head has well and truly gone.

 

I tried,

I really tried,

I wanted to be like everyone else so badly.  To have a career.  All I was asking for was one chance.

I wanted to be included, I wanted a place to belong.

 

I can’t be someone I am not though and ultimately I think that is why so few adults with ASD are in employment, as a society we have ASD awareness but actual acceptance is a long way off.

I am a wife, a mother and a carer and I am going to have to learn to accept that is all.

We can’t compete.  Potential employers won’t give someone who has ASD a chance over someone who is  neuro typical.  The whole traditional system of recruitment is unconquerable to those with ASD.  We fail at the first hurdle.

 

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It takes a very special village….

I never really appreciated the saying “it takes a village to raise a child” until this last few years.

When you are the parent to additional needs children you need a very special village both for yourself and your children.

Raising any child is hard, raising a child with autism and or ADHD is a challenge on a whole other level.  Being a parent with ASD only complicates everything even further!

You need people who won’t give up when times are tough.

You need people that will make time for you and your children when you or they need it.

You need people that recognise how much time, effort and energy it took you and your child to take that next step.  To celebrate the achievements that seem small and insignificant to others.

You need people who believe anything is possible when faced with the impossible.

You need people to be kind, underestanding and patient.

You need people willing to work harder than they may have ever worked before.

You need people and places that want to see you and your children  grow and achieve what once seemed impossible.

Recently it has struck me how blessed I am that each of my children and myself have a special village of extraordinary people around us, these people are extraordinary because when we needed them they were there, through the good times and the bad.

In my own village there are other additional needs parents who stop me feeling alone on the darkest and hardest of days.  Those that stand beside me and say “I hear you, I get it, you are not alone.”

There are my friends old and more recently made who remind me I am more than just a mum and a carer.  Friends I can turn to for advice and support when the panic of yet another initially massive sized crisis hits, in our house at present we have at least one crisis a week!

That is the reality of being a neurodiverse family.

There are a small circle of friends who I hope knows who they are that I will always be eternally grateful to, for always listening.  For always guiding.  For occsionally throwing their arms around me and giving me a hug.  Even for giving me a stern talking too when I throw up my hands declaring I can’t do this anymore.  I am grateful.

There are the special professionals who although they are paid to help support me and my children go the extra mile, they return my calls in their own time when they should have been home to their own families an hour ago, always replying  to emails,  they help me unpick a problem without ever being judgmental, they listen even when I can’t find the words to explain what and why I am struggling, they offer encouragement when everything seems hopeless, many have crossed boundaries and become friends still supporting long after their professional roles with our family have ended.

My children’s villages have much the same structure and purpose of my own,  they feature places where they are accepted and included by people who genuinely care.

My eldest child who school never really worked out for has grown considerably thanks to our local theatre and the people there as well as another local business with whom they volunteer with.  They also have an online community of like minded individuals in the gaming community to socialise with.

My middle child has had tremendous support recently from a school I had a very poor opinion of after the experiences of my eldest child there.  They have done so much to help and support my child my opinion of them has greatly changed.  This child is also included and accepted at our local Guides, theatre group and the groups where they themselves are a volunteer.

My youngest child is loved by everyone that knows them, despite having the greatest level of support needs, this child is blissfully happy most of the time,  in this child’s village there are many people who make time for them, even the checkout operator at our local supermarket is in this child’s village.  All who gives their time even in the smallest of ways helps this child grow through new experiences and adventures.

The people and places in my village and those of my children see potential, they see beyond diagnosis’s, they recognise talent to be nurtured and supported.  The help us all individually and as a family be included and valued in a world that still struggles to include those who are neurodiverse, they give me hope that the world is slowly changing to accept quirky and different.

Every child and family needs their own village.

I know neither myself or my children would be where we are today if it wasn’t for all those special people who are in our village.

 

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Perspectives of New Year……

Today is New Year’s Day.

It is the 1st of January 2019.

New Year is seen as a time for new beginnings, a time for fresh starts, a good time to make positive changes.

The whole ethos of ‘New Year’ is totally conflicting  with all, those on the spectrum seek comfort from.

As soon as the bells toll at midnight, I am catapulted out of my comfort zone.  All of a sudden everyone from close friends and family whom I am comfortable around to strangers want to hug me, shake my hand and kiss me, to wish me a happy new year.  I can remember as a child getting into trouble at a party for being rude because I wouldn’t join in.

For anyone on the spectrum or those with sensory issues having your personal space invaded, being touched and kissed however well intentioned can be totally overwhelming.

Like it or not everyone has smells, I find hugging anyone wearing perfume nauseating. It is more than that though, there are the scents of the last food or drink a person has consumed, the detergent their clothes are washed in, the soap they used in the shower, each close encounter with someone exposes me to a barrage of overpowering scents.

I am always hit first by the scents a person carries.

I find shaking hands doesn’t come naturally  to me, the first thing I want to do after someone shakes my hand is to rub off or wash off the feel of the other person.  Especially if it is someone I am not close too.  This is a hard concept to explain but it is like I can still feel the other person’s touch long after our hands have parted.

Hugging is a total invasion of my space, my whole body tenses.  Sometimes it actually hurts, it is like I am try to pull away from the other person drawing back internally into myself.  The less familiar I am with the other person the worse the reaction.

Kissing, I think you can already guess where this is going, I try my upmost best to avoid! Kisses are only on my terms!

A quick handshake, hug and “ Happy New Year too you” and I duck out at that.

Maybe I appear rude. I wish others understood how much something they see as a kind gesture overwhelms and exhausts me.  I know from watching my little people they find the whole experience just as unnerving.

It can be overwhelming enough when this happens once with someone I am not close too, but for the next week I know I will be trying to minimise my own exposure and that of my children’s to these well intended uninvited gestures!

Now let’s consider the bigger pressures and anxiety the concept on New Year brings, the word ‘new’ for myself and many others on the spectrum automatically means something is changing.  We draw comfort from routine, familiarity  and consistency.  The idea of something new is at odds with this.

Even if our day to day lives are staying exactly the same, there are social expectations to make a positive change, to make a better you, to embrace a fresh start, these ideas all strike fear into me, they make me anxious.

Why would I want to be a new me?

For the first time in a long time the thought of a New Year is hugely overwhelming, crushingly so to me.  It is an all engulfing thick grey.  It is heavy and suffocating.

I feel really anxious and unsettled about changes that lie ahead, changes New Year is bringing closer.  All three of the special little people in my life appear to be feeling similar apprehension if perhaps for differing reasons.

The passing of New Years in the holiday season also signifies the beginning of the end of the holidays.

In our house and I know it is the same for many other spectrum families, holidays are a time to breathe and rest.  They are a break from the exhausting everyday demands.  For me they are a time to catch up on processing.

I feel I am still processing several events from before the holidays.  I am not ready to move on.  My internal MAC is on a go slow.

Right now in our house three of us are anxious about the schools starting back next week, having to change back from the holidays routine, having to face all the demands and expectations school brings.

One of my children is still trying to settle in a new school, meaning frequent changes and new experiences. New people. New places. Different expectations.

Another is having to face a major key staff change.  Meaning new routines.

Both are having to build new relationships. Having to teach someone new their way of being and doing things and perhaps having to compromise a little or a lot in trying doing something’s  in a different way.

The third is trying to find their way out of school.  Moving out into the world. As am I.

I am having to prepare myself and them to try and survive the coming weeks, to try and ensure positive outcomes for my children and those around them.

I feel under immense pressure to find a way through without really being sure how to make this happen.

I realise now university for me has been a bit of an anchor over the last few years and taking a break, although much needed has lost me that anchor and security.

Wider than that, in my own separate life I am embarking on a new journey, life for now is take in an unfamiliar direction as I try to find a job.  Again this is bringing massive changes, demands and pressures in my life.

So far job hunting isn’t going well.  If only I could write answers at interviews.  I am sure interviewers find it confusing that I can write a brilliant application form yet at an interview struggle to put relevant words together.  Or I somehow get it all together and even amaze myself giving an excellent interview only to still get knocked back.  Apparently I lack relevant experience!

Both scenarios happened recently and I still can’t decide which is more frustrating.

There  is a part of me also wants to scream at the world have you any idea how hard all this is?

How long it has taken me to get to this point?

How far I have had to come?

My child most like myself is currently caught in a very negative spiral.  They see no point in constantly trying,  because they feel their efforts are not appreciated or recognised.  Right now I can relate to how she feels.   It is that feeling of never being enough.

As an adult I get that is the Aspie perfectionist trait.  I try to keep that one in perspective. Try to keep at the forefront that trying and not giving up are enough.  That one day someone will see the potential.

That is a hard lesson and concept for a child to understand though.

The semi rational adult in me knows and accepts New Year comes round every year.

It doesn’t mean I have to like it though!

I know life is constantly changing, sometimes that is a good thing.  I am hoping and praying this year brings lots of good things for all of us.  That enough of the jigsaw pieces will fall into place to build positive progress.

The thing with New Year though is it magnifies all these things and all at once and sometimes that is all just too much.

 

Happy New Year everyone.  Be kind to each other and yourselves.

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