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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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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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Square Peg, round hole….

No matter how hard you try square pegs don’t fit in round holes.

Why is that simple fact so hard for the wider world to grasp?

Yes with tools you could round the edges of a square peg. You could take away the edges that don’t suit the round hole, or you could try forcing the peg with a hammer, problem solved?

No.

You are forcing that square peg to be something it’s not, you are causing damage.

Why not accept the square peg and make a square hole?

 

Right now I feel this is the story of my life.  It is the story of my children’s lives, it is the story of the lives of many, many families living with Autism.  I am exhausted.  My daughter is too.

We live in modern times where huge themes and values are equality, diversity and inclusion.  They are for the majority of thoes affected by ASD just theories.  We need action.

Equality is about removing barriers an individuals unique characteristics create, to offer that individual the same opportunities  to participate in life as someone without those same unique characteristics.

For a child with ASD, that could mean making environmental adjustments to provide sensory input or prevent sensory overload.  Helping them facilitate communication.  Allowing more time to process information.  Just being there to provide reassurance and understanding.

Diversity is about celebrating and accepting  each individuals  unique characteristics and recognising everyone has something to offer.

For a child with ASD that often means delving deeper than what you see on the surface.

Inclusion should mean included in school and in society.

All great theories.  Why is it so hard to put them into practice?

 

We are less than three months into one of my children’s first year in a new school.

We spent two years gearing up for this transition.  Huge time and effort went into planning for this.

It is an absolute off the scale disaster.

There is no other way to describe the current situation.

My child is only receiving 11 hours of education a week.  The rest of the time they are at home.

Why, because she couldn’t cope.  The challenges were too enormous.  Too many changes all at once.  All the protective measures failed.  No consistency.  Not enough support.

The answer, part time timetable.

I wish school understood the message their answer is giving to my daughter and her peers.  It is a message that says “you are not welcome” and “you don’t belong”.

My daughter believes it is all her fault.

We failed her.

My daughter didn’t fail.  That is something I want to make clear.  My daughter  tried so hard.  For two weeks she managed to appear completely typical to all the other new starts at high school.  Then the cracks appeared.  I could see the legs frantically swimming whilst on the surface everything looked just fine.  I knew she was drowning….

I tried everything to keep her afloat.  I begged someone to catch her.

I am so proud of my daughter.  I can’t get that message through to her though.  She measures herself against her peers, they go to school, they manage, she can’t do that.

We are now at week 10.  My child spends a few hours a day in school, the majority of that time she isn’t in class.  My child is not included she is effectively segregated.  My child is not accepted, nor valued, my child is bullied day in day out.  My child is called a freak.

A few great teachers get my daughter and really try with her, we are hugely grateful to those few.  They are the exception not the rule.  Teachers were asked if they were comfortable having my daughter in their class, most refused.  My daughters class were asked if they were comfortable with her being there.  No one asked my daughter if she was comfortable in class.

I wish my daughter knew how beautiful, clever, smart and talented she really is.  All she believes is she’s a freak.  When she is in class her peers make sure she knows that is how they see her.  They block her way in the corridor, send her hate messages via social media, spread lies making my child out to be a monster.

My daughter doesn’t feel safe in school.

How can she learn when feeling frightened all the time?

I have written letters, tried to contribute to meetings, plans are drawn up but never followed.  No one takes responsibility.  No one really cares.  At the end of the day they all go home.  We are the ones sitting into the small hours holding a sobbing child.  We are the ones tasked with getting her back into school everyday.  We are the ones trying to prevent her giving up completely.

Every day I watch my daughter slip further away.  We are watching her like a hawk.  I know she is barely eating, she barely sleeps.  The sparkle has gone from her eyes.  Huge black circles replace it.

We wait on Children’s And Adolescent Mental Health Services to decide if this time they will help, if this time there is enough evidence to finally go for assessment.  They are waiting on school to return completed paperwork sent to them  weeks ago, before deciding how to proceed.  School lost the paperwork.

The bullying has been reported several times, still it carries on.

Seriously why does no one deal with the bullies?

The drawn up plans are not implemented.  Sounds really positive in a meeting, the reality, push her back to class no support, no adjustments, the result she didn’t cope and  thinks she has failed all over again.

We are at the point that school don’t respond to emails.  How ironic, considering it is widely recognised communication  and partnership working is the key.   They know I have ASD and they know I prefer to communicate in writing.  They live in a world though where verbal communication seems to be valued more by typical beings.

I think we have reached the point where nothing is salvageable.

You have no idea how heartbroken and angry  I feel.

Heartbroken because she deserved better than this.  The majority of my daughters needs were known about well in advance.  Professional’s offered advice, they chose not to follow it. My daughters needs are not classed as great enough for one to one support funding.

Angry not just at those that have failed my daughter, I am angry that I let myself believe it would be any different for my daughter than the years of hell another of my children had.  For a second I believed if we could work together.  I believed we could make it work.

The hard question what to do now?

My daughter won’t cope in another mainstream school, it is going to take a long time to undo the damage now done.  My child won’t meet the entry requirements for an additional needs school, her needs not deemed great enough.  Home education is not the answer either. She is highly sociable, well tries to be and seeks the company of other children.  Home education would be too isolating.

The heartbreaking part to this story is how un unique this situation is.  This is happening to hundreds of children up and down the country who have or are waiting on an ASD diagnosis.

Inclusion, Diversity, Equality they are just meaningless words.

The reality is miss understood, broken, isolated and excluded.

When will the world realise?

Square peg’s don’t fit in round holes.

 

Square peg in a round hole with hanner

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Walking in her shoes…..

It has been said many times over the years that my middle child and I are so alike it is scary.  We look alike, have the same mannerisms, we even sound alike!

Someone close long ago once said to me “there could never be another like me” along with “they broke the mould when they made you”.

They got it wrong.

For she is so very much like me.  There is a part of me that wished she wasn’t.

In theory that should make it easy to be the parent she requires, to give her the nurturing and support she needs.

The reality is over these last few weeks I feel I am living in a parallel universe where I am back starting my own journey through high school.

It is not going well, I know how she feels, I know how she thinks, she is walking in my shoes and I am walking in hers, yet somehow she is just out of reach.

Yesterday she told me everything feels wrong.  I remember exactly how that feels.

School days are like a helter-skelter, rollercoaster ride of emotions for us both, both of us are anxious, stressed and exhausted, she feels this way because it is all so new and overwhelming, I am feeling this way because I know how much she is struggling and I am worried how much more she can take.

School, life  and ASD totally broke me once.  I forever have to live with the scars that prove it.

The trait I learned to control and hide eventually at school is so highly visible within her right now, she shouts, swears and offends teachers and pupils every time it all gets too much, she is isolated and alone, vulnerable and miss understood.

I keep racking my brain trying to remember all the tricks that got me through the days, then I remembered how awful my own early high school days were, I was flung out of classes, I was easily led into trouble, I didn’t fit in either.

It was Christmas of my final and fourth school year before I settled down.  Before I worked out I needed a desk in the corridor, gum to chew and music to listen to, to cope, I was given everything I asked for because at least I had stopped shouting and throwing school furniture!

I still have that final school report where two different teachers referred to me an an “enigma”.

I now fully understand the frustration and confusion they must have felt!

Being a teenager on the spectrum is so hard, so confusing, so overwhelming and challenging.

My daughter is doing as I did, questioning why she can’t behave like everyone else, why she can’t follow group conversations, why can’t she communicate what she really thinks and feels, why she doesn’t share the usual teenage girl interests, why it feels like she is living in a world she has no rightful place in?

I keep trying to build her up, “it’s o.k to be different”.  “You are perfect to me”.  “If you believe it you can do it”.  She doesn’t want to hear it. She wants to be like everyone else.

We are embarking on what must be the hardest life lesson to learn as a teenager with high functioning ASD, no matter how hard you try to be neurotypical it can never be.

How do I know?

Right now she is walking in the very same shoes I walked in many years ago…

 

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