Thursday 26 November 2015

A Slice Of Autism Christmas Survival Guide...

December can be a tricky time for many children on the Spectrum.
So I have created a 'Survival Guide' to the Festive season looking at all aspects of family life including;

  • Food and family meals
  • School
  • Parties and pantomimes etc
  • Looking after yourself
  • Routine / Social Stories
  • Sensory issues
  • And the big days itself ......to name but a few
There will be helpful links,videos, helplines,visuals and little pick me ups along the way so we can get through the madness that is December together!


I will share a page each day on my Facebook page during Advent...
http;//www.facebook.com/sliceofautism/?ref=aymt_homepage_panel

And the full Calendar can be seen on my website now at...
http://asliceofautism.blogspot.co.uk/  

Or why not subscribe to my blogs via the link on my blog to have the handy tips delivered straight to your inbox each day, so you dont miss out?

I hope it will be useful for you!

Mrs M x

Tuesday 24 November 2015

How we can help alleviate the build up of stress at School for children with Autism

Many children on the spectrum can have huge anxieties about school, and if we think about it it’s no wonder really; the hustle and bustle of the playground, the unwritten rules and complex friendship groups, and the language and sensory demands that bombard our kid’s fragile nervous systems is bound to take its toll. And that’s before we even think about our kids sitting still in a chair and actually ‘learning’ anything formally.

 I worked for many years within the Primary Education sector with Autistic children, so I have a good understanding of what daily life for many kids on the spectrum can be like. I also have an 11 year old son who went through Primary school as a very anxious child with High Functioning Autism and sensory issues. He would often cope at school and reflect all his anxiety inwards, only to explode once at home. Until finally during Year 6 it all just became too much and his mental health 
deteriorated due to prolonged anxiety. He now attends a specialist school in Year 7.


So I kind of feel like I am positioned well to see things from the perspective of both school and home when it comes to school related stress and anxiety.  Some parents can feel that their concerns aren’t really taken seriously, and that they can come across as paranoid, overprotective parents as they often see a different child that the one that school sees. And that can cause conflict and tension between home and school which is helpful for no one (especially the child in the middle of it all). And with the new SEN Code of Practice it’s even more important than ever that schools works collaboratively with parents as that will lead to the best outcome for children.

However  I completely understand that it can be really confusing when presented at school with a child that seems to have multiple sides.  A child that seems fine at school and yet mum reports that as soon as they get home their child goes into meltdown; crying about their school day, struggling with their homework and lashing out at their siblings. But hard as this can be to get our heads around....this is real thing as many kids have the ability to hold it together until in their safe place.... which is nearly always at home.
So if you find yourself in this position as a parent or a teacher what can we do to help?

                                                
Open communication and trust
I know this sounds obvious really, but relationships can break down so easily, and this is completely avoidable. Parents are usually exhausted after years of little sleep and incredible stress, and often have been left feeling that no one believes them.  So when meeting to discuss issues about their child remember that it’s taken a lot for these parents to ask to meet you.

And parents remember that teachers often won’t have had specific training on Autism. So share information, share good practice, be open and honest with each other about what you know, and admit if it’s something you feel out of your depth with. I know as a mum I know my child best and my views will be vital in helping school deal with any issues my child may be having, as can teacher’s knowledge of the curriculum and school policies be vital in working together to support each child.

Look for subtle signs
Many children on the spectrum don’t like drawing attention to themselves as this means they will have to have a social interaction of some kind, which can make them really uncomfortable. So instead they sit quietly and can appear to be coping. It means that we are going to have to look for the subtle signs. Parents will be really useful helping school with this as they know their child’s signs. 
Things to look out for may include-

 Rocking back and forward on a chair
·         Chewing sleeves/ fingers/ hair
·         Difficulty concentrating
·         Wanting lots of toilet breaks/ wandering/ avoiding the task
·         Disruptive behaviour
·         Low self esteem
·         Avoidance
·         Never volunteering to answer questions
·         Lack of appetite at lunchtime
·         Following the crowd
·         Humming/ vocal noises/ throat clearing
·         Finger picking/ scratching
·         Over compliant/ very quiet
·         Wriggling / difficulty sitting still
·         Needing things explaining lots
·         Late/ incomplete  homework
·         Forgetting verbal information


Work out ways to release the build up of pressure if you see any signs of stress
The school day is very busy and there are lots of things teachers have to squeeze in. But there are lots of quick and easy things that can be done to help children release the stress, relax or cope with the day with less uncertainly. And many kids on the spectrum have sensory processing difficulties too which will be having an impact on their ability to learn and process information. 
So here are a few ideas to try-

·         Fiddle toys when sat listening ( could be as simple as blue- tack)
·         Physical exercise- break times are vital part of kids day, never take this  away
·        Carpet square for own place on the  carpet, or even better let the child sit on a chair as they often need the support
·         Brain breaks as part of the lesson
·        A busy box filled with things the child can do independently for periods of free choice or when there is a lot of sitting and listening involved in the lesson
·         Task sheets breaking down the activity
·         Timetables up in all the classrooms
·         Can homework be done in a lunch club?
·         Ensure information is written down , including messages for home
·         Incorporate special interests where appropriate
·        Be aware of the environment; seating positions/ lighting/ smells/ noises etc and how this can affect a child’s ability to learn
·         Provide a chill out area ( could be some cushions under a desk, or a pop up tent)
·         A worry book/ box can help a child leave their worries at school
·      ‘2 stars and a wish’ can be done as a 5 minute debrief at the end of the day (2 things you have enjoyed today, one thing that didn’t go so well) it’s quite  a nice way to get a child to open up. Or simply some quiet time at the end of the day to listen to an audio CD or read a book as this can help with the transition home
·        Very clear expectations and no open ended questions
·   ‘Choice without a choice’ as some kids struggle being put on the spot; so “you can do this, or this”rather than "what would you like to do?”
·     Remember some kids can struggle with the pace of language so wherever possible back up with visual support


Give home a ‘heads up’ on any changes to the day ASAP
Sharing information is essential for keeping children prepared for any changes .This could be done in a home school book/ emails/ a little note home on a post it note or a phone call at the end of the day. And parents its really useful for school to know things like your child has had a bad night’s sleep, they are fretting about a test, or non uniform day etc. Keep those communication channels open in whichever way works best for you both.
There are many more ways in which children can be helped at school. But as each child is so unique and different, their needs will reflect that too. Sometimes all we need to do is think outside the box a bit with our kids.  A collaborative approach always works best, in which we listen to each other and respect each other’s knowledge and experience. The key to helping our kids is to learn from them. Watch them and listen to what they’re body language and behaviour is telling you as they can’t always verbalise it. Their needs can usually be met with a few simple modifications and good communication between home and school.

                   
(This blog has been published on http://www.kathybrodie.com/ as a Guest Post 24/11/2015)

Friday 20 November 2015

What I want my child to know when his meltdown is over

To my beautiful boy,

You look so peaceful curled up in your bed tonight little man, it’s like the events of the day have washed over you with no ill effects at all. Your face shows no sign of the meltdown you endured earlier in the day. But as I stand here watching you dream, I can’t help but re-live the afternoon’s events over and over in my mind. Could I have done more to help you? Could I have avoided it from happening?

I am exhausted, but peaceful sleep won’t come for me tonight, my mind was whirring around as I wrestled with my thoughts, so I find myself here, having crept into your room on tiptoes so as not to wake you. Peering over your bed and wishing I could tell you how I feel.

You’re so precious to me my beautiful boy. I love you more than you will ever know. I wish I could make things easier for you because the world is just too much for you sometimes.
And today the meltdown fog took you away from me. I wish it was me in your place. I hate seeing you lost in yourself like that.

I had seen the fog approaching you, I wanted to scream to it to leave you alone, please stay here with my son, and let me make it better for you. I’m your mum and I am here to help you through it, that’s what mums do.
But I could see the panic in your face as you struggled to catch your breath. I could see the fear in your eyes as it began to engulf your body, swallowing you like a predator. I felt so helpless because deep down I knew this had to happen. Your body was saturated and overloaded with stress, and it had to come out somehow.

Every nerve in my body was telling me to scoop you up, but my motherly instincts were so wrong as my very touch was painful to you, and made you pull away from me all the more. My heart broke because I felt like I was making things worse. I felt so helpless as the fear and rage swept over you. 

As I watched helpless, I saw my own panic reflected in your teary eyes, and I didn’t know what to do. I hate feeling like that. It’s meant to be my job to protect you my beautiful boy.

I tried to tell you it would all be alright but you couldn’t hear me, the meltdown fog had blurred your senses and the world around you was gone. I could feel my heartbeat pounding as I tried to stay calm and keep you safe from yourself.

I know you don’t mean to hurt anyone when you lash out. It’s not really you, so I take the hit as doors slam and chairs fly. Time stood still and every second felt like hours while I watched you lose yourself to the fog. All I could do was let it take its course which pained me to my core.

And then eventually you became quiet, you rocked slowly and I knew this was your way of calming yourself, before  you slid  down the wall in a heap on the floor.  You slowly unravelled every muscle of your body and there you were.

My beautiful 11 year old little boy; so vulnerable and raw.

 I could feel your whole body sigh as the exhaustion set in. And I wanted to cry, but I fought the tears back. Holding my breath I waited for a sign that you were ready for me to enter your world once more. Your eyes slowly opened and looked at me. 
My knees give way and I crawled towards you reaching out gently to touch your hand.

Your eyes closed at my contact and I knew you were with me once more. I needed to hug you, to release all my adrenaline too, as suddenly realised how exhausted I was. So there we lay on the floor. My hand on yours, I have no idea how long we remained like that. But that touch was so precious to me that I never wanted it to end.

 And as I lay there I realised something. You never really left me because when you’re swamped in that fog I feel everything with you. You and I are so in tune that I feel every fear, every anxiety, every scream and every feeling of pain you inflict on yourself..... I feel it too.

We are so connected you and I that your pain is my pain.

Do you know you’re not alone my angel? I know you may not say it, but deep down I know you feel it because with me you’re truly yourself. It’s safe to unravel when you are with me. And I want you to know I will be here, no matter how thick the fog gets, I will be there by your side all the way waiting for you to find you way though.

As I watch you here sleeping in the darkness my love overflows, and the tears drip down my cheek.
 I kiss your forehead and whisper to you how proud I am of you. I may not be able to stop the fog from coming all the time, and I can’t make the world a less confusing place for you always, but I know that it’s going to be OK because I love you to the moon and back, and I am here for you always right by your side.

And really that’s we need to know. 

The future remains uncertain; but right here right now, all that really matters is us. And we’re in this together, always and forever.

Goodnight my darling boy, sweet dreams
Mum x

This blog was published on the Mighty 20/11/15)
 http://themighty.com/2015/11/what-i-want-my-child-to-know1-when-his-meltdown-is-over/

Wednesday 18 November 2015

The Meltdown






The Meltdown

My boy
My beautiful boy
The days been hard
The world is too much sometimes

I can see the fog creeping over your body
Don’t let it take you
Stay here with me, let me make it better

But deep down I know this has to happen
It has to come out somehow
You're saturated

I’m your mum and I am here to help you through it
But my instincts are all wrong
Because every nerve in my body is telling me to scoop you up
My beautiful boy I need to make it better

I am helpless

My heart breaks to see you like this
I’m losing you to the fog, to the meltdown
It’s engulfing you, swallowing you like a predator

You’re gasping for air
Panic and rage soon follows
Breathe, remember to breathe my boy

I don’t know what to, what should I do?
I feel like I make things worse
My touch is painful to you, you pull away

What’s wrong, what can I do?
You can’t hear me
Heartbeats faster

I see my panic reflected in your eyes
My boy is so frightened
You lash out, I take the hit
Doors slam, chairs fly, I need to keep us safe until this passes
Seconds feel like hours

Slowly the fog subsides
and you become quiet
You rock slowly to calm yourself
Then slide down the wall in a heap
Your body unwinds and sighs

I hold my breath, and wait wrapping my arms around myself for comfort
Feelings of calm creep back in
My knees give way, I crawl towards you
Reaching out I gently touch your hand
You close your eyes

My love overflows
It’s OK my angel, you’re OK now
I love you
We're going to be OK

Mum xx

Sunday 8 November 2015

Who is 'that mum?'....

Can I share a story with you?
A story behind who ‘that mum’ really is.
You see ‘that mum’ found herself on a roller-coaster of a  journey, a journey that she hadn’t really ever planned to ride, and she certainly hadn’t read the guidelines for!


Now you may be read this and think that mum sounds just like me, I’m so relieved that I’m not alone.
Or you may read this and think I know that mum; and I never realised that’s why she stands in the playground each day looking down at the floor, maybe I’ll go and talk to her?
Or finally you could read this and think I hadn’t realised how much courage it took for that mum to finally open up to me and let me into her world.
So here is the story of ‘that mum’

One morning in September there was a playground full of nervous little kids. All looking so grown up; wearing their crisp clean uniforms, and running around in their squeaky new shoes. Their parents were beginning to smile and nod at each other in a knowing kind of way, all as nervous as each other. Then the awkward silence was broken by the bell ringing loudly, a signal to everyone that it was now time. Time for all the anxious parents to let go, and time for the children to start on their journey of discovery.....as it was their first day of school

Well here she is
Here in the middle of this
But her son was screaming, and clinging onto her as if his life depended on it, and she was wishing the ground would swallow them up, as all eyes looked in their direction.
Her poor boy, why was he being like this, why couldn’t he just be like all the other kids?

Day after day as his anxiety continued she told herself it was just his nerves, it would soon settle. But niggling in her gut was this fear that she couldn’t shake; a feeling that something with her child was different. Yes he was anxious, and yes he needed routine, but more than she would have expected for a little 5 year old boy....She suspected there was more going on, but she was too afraid to admit it yet, even to herself.

So instead she distracted herself with thoughts of the football matches they would proudly stand and watch. And the school plays they would sniffle through, and that kept her focused for a while.

But slowly she began to realise that her son was just unique from his classmates. She watched with a feeling of envy as the other mums in the playground collected their kids who were all smiles and laughter. And she found herself beginning to avoid eye contact with them to ensure she didn’t have any awkward conversations about how well it was going. She just couldn’t face opening up to them, or worse having to pretend that everything was OK.

So she would stand in the corner and wait nervously for that first glimpse of her son, as she knew instantly as soon as she saw him what kind of day he’d had, and therefore what kind of evening they would face at home.

 He would stomp out at the back of the class looking pale, scowling at her whilst chucking his bag in her direction, and then he would often explode in the car, pushing his sister away and sobbing uncontrollably. He was struggling with the demands of school. Then teatime would become a battle zone, and homework ... well let’s not even go there with homework! It was just the most horrific time of the day and left them both feeling battered and bruised with the stress.

Day after day she began to question what more she could do, and then the guilt would eat away at her because she was a working mum. She was clinging on by her fingernails. It was exhausting, especially when she didn’t really know why it was happening, she had no answers, and no one else saw it but her family. But deep down she just knew......

Everyday was getting harder and harder to get him into school, and eventually she became so exhausted holding it all together and putting up this front. Tired and worn down she knew something had to give.

She felt sick.. She had to start being honest with herself and stop pretending everything was OK.
This is not something she wanted to have to do. You see she wanted to be the mum on the PTA organising the cake sales, and dutifully volunteering as a mum helper, reading once a week with his class. That’s the journey she had expected to be taking with her 5 year old son, not this roller-coaster ride she was now on.

It would take all her courage to start this conversation with someone she barely knew and let anyone glimpse into her world. A world she had kept hidden for so long to protect her son from prying eyes and judgement.
She felt like she had been slowly climbing this roller-coaster for months, higher and higher she had gone..... she was now at the top of the climb facing a momentous drop into the unknown, there was no other way down....  she was so scared.

What would she say?
What would she think?
Would she think she was a bad parent?
Would she call social services?
Will she laugh at me?
So her defence walls were guarded. The war paint was on as means of protecting her feelings keeping her dignity intact.

She avoided it for days, head down, looking at no-one. Never quite plucking up the courage, and never finding the right time to start a conversation.  But then one particularly morning full of stress (non uniform day) she simply could take no more,  and whilst peeling her screaming  son off her leg, her gaze caught the teacher’s eye. And the emotions simply overflowed, tears began to well up and slowly trickle down her face.

This is where her complex journey with school as a special needs mum begins.

This is where my journey to becoming ‘that mum’ all started!

Mrs M x

A version of this blog can be found on http://www.kathybrodie.com/