Bonfire Night, Autism and Me

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For most people, November the 5th (or sometime in October until late November as it’s become) is a reason to celebrate with  bonfires and firework displays. As a person who has sensory issues I can honestly say that it is NOT my favourite time of year!

Before you mumble ‘miserable sod’ and hit the X on the top of your screen, allow me to explain..

As a child, I remember having a firework display in our garden at home. I say display but it was just my dad sticking some fireworks in an old biscuit tin filled with sand and setting them off one at a time.

Mum made soup and we stood about shivering waiting for the fireworks to splutter into life and you could bet that in any box of fireworks there would always be one that performed like a wet fart!

I wasn’t particularly safe with sparklers either but I did enjoy writing rude words in the air while Mum wasn’t looking.

I remember thinking that I should be having fun because I was a kid and that’s what kids do. But I wasn’t really having fun. I was cold. My ears hurt and my eyes smarted from the smoke that filled the air. I preferred to sit in my brother’s bedroom window and watch the displays light up the skyline. I’d sit there for ages until my eldest brother would tell me to shift so he could do his college work.

Mum started giving us the option of fireworks or money so I chose the money and sat and watched the fireworks from the window. For me, this was a most agreeable arrangement.

Ex hubs and I took the boys to a display once when they were little. We made sure our dogs were secured in the front room with the TV on loud but, still, we arrived home to a room full of poo, chewed up carpet and a video remote with teeth marks in it and it was decided that in future I would stay in with the dogs and he would take the boys to the local cricket club’s display.

I was relived not to have to cope with the noise and crowds but my relief was short-lived as my four-legged friends would totally lose control of their arses with each BANG.

Then there were the intermittent barfing sessions…

I would spend the entire night on my hands and knees, peg on nose and cloth in hand – disinfecting the crap (literally and metaphorically) out of the carpet while trying to stay conscious which was a BIG ask, trust me!

Autism

Most people who have autism have sensory processing issues to some degree. They are either under sensitive or over sensitive and bonfire night can cause a great deal of stress and anxiety.

Firework displays, in their nature, are unexpected because you never know what is going to happen and when. This is very stressful to people with autism who need structure and routine and to a child who’s senses are exceptionally heightened, the noise and blinding lights can be painful, not to mention distressing.

However, children with autism can have a positive experience on bonfire night but it does require planning.

Counting down using a calendar and social stories will help the child to know exactly when bonfire night takes place. Obviously it doesn’t just happen on one night now so while you can be prepared for any display you will be attending you need to take into account those that are happening around you on other nights. So be prepared to turn up the TV, provide ear muffs and distractions.

Showing your child a video of fireworks will also give them an idea of what to expect. Some schools do this as part of education about safety on bonfire night.

Do some research on the events in your area. Some events are disability friendly and are less likely to be crowded.

Ear defenders are invaluable when it comes to noise – unless you have a child like S who needs them but doesn’t like how they feel. I understand this though as I struggle with headphones for the same reason. Ear muffs are gentler. They won’t block out the noise but they will take the edge of it and they keep the ears toasty warm.

You could also jump in the car, park up somewhere and watch the skies light up. This is my favourite way of watching fireworks – especially with soothing music and a flask of something hot with a little nip in it – unless I’m the one who is driving and then it’s minus the nip.

If your child can’t cope with any of it then stay at home where it’s warm. Put on their favourite TV show and cuddle up. Don’t feel you have to do the ‘normal thing’. Understand that if everyday life provides a challenge for your child, imagine how fires and explosions will make them react. Even the fun stuff is stressful for the highly-sensitive autistic child.

S is excited about the fireworks because all his classmates are and he copies what he sees but this is the boy who screams when the hand dryers go off in the toilets or I put the hoover on and who struggles to wear the ear defenders that will keep the noise to a minimum. Noise triggers meltdowns.

For this reason, a public display isn’t a good idea this time but I do happen to know of a place where we can park up and watch the Manchester skyline explode without the sensory onslaught. I’ve uploaded the more gentler tracks of the Harry Potter soundtrack onto the iPod and, hopefully, it should give S a pleasant experience of firework night.

The lurcher will be safe at home with Classic FM on full blast as she seems to be made of stronger stuff than my terriers were, thankfully.

Whatever you do and wherever you go this bonfire night, stay safe and spare a thought for the those who struggle at this time of year.

Because of the poor economy, we couldn’t afford fireworks at our house. The only snap crackle and pop at our house yesterday was when I poured the milk onto my Rice Crispies! ~ Anon

A Bit Of Everything

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The Importance Of Respite For Autism Parents

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Caring for a child with autism is a labour of love. As parents we are strong because we have to be. However, despite our best intentions, the situation often becomes overwhelming.

S has highly functioning autism with sensory processing disorder. His main problems are social interaction and challenging behaviour. He is also extremely affectionate (especially with me) and as wonderful as that is it can also be problematic.

It’s a myth that autistic children don’t show affection. Autism is a spectrum disorder so while some children will struggle to show affection others (like S) will be incredibly affectionate. ‘That’s good isn’t it’?, some might say. Well, yes, but not when he’s being affectionate towards strangers passing the garden gate or the man who’s turned up to put the bathroom floor down.

S is an extrovert and his behavioural problems are a result of him being overwhelmed. To people ignorant of the facts he can come across as a naughty child but to those who know better – he is autistic.

Autism puts a strain even on the strongest of relationships. Parents of autistic children live under constant stress with situations such as melt-downs which can be exhausting for all involved. S is sometimes over his while I am still trying to process witnessing him having totally lost his shit. Yet somehow I have to pull myself together and get on with it. However bad I feel and however hard this particular melt-down has affected me, I have to postpone falling apart until I can do so alone.

The level of stress that parents of autistic children endure can be severe and that can have a long term affect on health. A 2007 study from the University of Wisconsin-Madison found that mothers of teenagers and adults with autism experience chronic stress comparable to combat soldiers.

This is where respite comes in..

Having a support network when you have a child with autism is important.

Most people have family that they can turn to for support but we don’t have any who live close by so our only option was to get S referred for a place at a local children’s disability centre for weekend breaks.

OH and I were not having any quality time for ourselves. At the end of the day we are both too knackered to do anything but watch TV, with me intermittently having to go to settle S back down. We came to realise that in trying so hard to meet his needs we’d been neglecting our own.

The way I saw it was that S had support in place at school and he had us but we had virtually no support as a family. Understanding that we needed help – we took the decision to get him assessed by children’s services for respite. We were accepted and he started at a local centre for children with disabilities a month ago and so far it’s working really well.

Three hours a week doesn’t sound much but it allows me and OH to do our thing knowing that our son is in good hands with people who won’t be fazed if he kicks off or goes on a very LOUD ninja-kicking session, as he is convinced that he is a ninja!

It’s lovely just being with each other because before S, there was an us and we need this time to be those people again, if only for a few hours a week.

As a mother of an autistic child I am always on call, even when he’s at school. I have to be ready for the phone calls to go and comfort him or bring him home. Only yesterday, I had to go and comfort him at school after he’d fallen down. He was unable to continue with his day until I’d comforted him. I held him for as long as he needed me to and then I went home.

Research shows that just one hour of respite a week can make a big difference and in my opinion, parents of autistic children need all the help they can get because autism affects the family as a whole, not just the individual.

Autism is a journey with more ups and downs than a roller-coaster but just as Paul McCartney’s willow tree stood strong against the storms, so shall we.

The willow turns his back on inclement weather;
And if he can do it, we can do it, just me and you. 

~Paul McCartney – With a Little Luck

A Bit Of Everything

The End of School Year and the Autistic Child

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I remember the last few weeks of term at school…

There was a different atmosphere and the time-table was no longer adhered to.

I remember thinking how bare the walls looked as the work was taken down in readiness for the Autumn term.

The teachers, who for most of the year were miserable gits, practically floated around with smiles on their faces. That little gobshite, Johnny Twatbag was going to be someone else’s headache come September!

The shrieks and squeals of excitement hurt my ears…and that was just the teachers!

They were all on Planet Good Mood because school was nearly out.

The end of the school year was a fun time for most children but not me.

I hated the change of routine and my heart would sink when the teacher’s said “We’re going to do something different!”.

My son’s diagnosis has made me realise that I have autistic traits, so I understand why his behaviour has plummeted over the last few weeks.

The transition to Year 1 began after half term.

There are lots of different activities going on and Year 6 are getting ready to leave for high school. It’s all very confusing and LOUD!

S soaks all this up like a sponge and he can’t process it all.

So his behaviour changes.

He is unable to tolerate even slight changes.

There are more ‘incidents’.

His behaviour becomes “challenging”.

His teacher phones me one day –  I can hear him in the background, spitting and shouting.

“We’ve tried everything, we just can’t calm him down”

I grab my coat and go round there.

I hold my child and rock him back and forth.

I can feel his tension begin to subside.

I can see the frustration in his teacher’s eyes.

She genuinely cares about him – enough to put herself on courses to learn more about teaching an autistic child. She once told me that she’s taught children with autism before but never one like S.

I know only too well how challenging my son can be.

There is no in between. It’s one or the other. He is happy or he is most definitely not!

Having given it a lot of thought, his dad and I agreed that it would be a bad idea for S to attend school on certain days where there was a major change to routine. S’ main problems are social and communication and he has Sensory Processing Disorder so we agreed that sports day and a trip to a farm would be too much for him at this point in time given that he’s struggling to cope with the smaller changes that are going on.

His teachers were all in agreement and the absences were authorised.

I felt sad.

I have photos of his brother on his first sports day – all smiles.

I had mixed emotions but my in my head, I knew that it was the right thing for S.

I also told myself that this is the situation this year..

He’s still only five years old.

He might be able to tolerate it next year or at least part of it.

At this moment, I don’t feel at all confident that he will be able to stay the course in mainstream but if he doesn’t it won’t be for the lack of trying on the teacher’s part. I couldn’t ask any more of them. They’ve been amazing.

I have read many stories about illegal exclusions with autistic children but not once have his school asked me not to take him in. He was in attendance during the recent school inspection. I truly believe that they have my son’s best interests at heart.

The hope is that he will get the extra support he needs and this will improve the situation. At the moment he gets support in the AM. The board has been approached and we are waiting on their decision. He needs the full support. Fingers crossed, he will get it.

We have a few more weeks to go until end of term.

We are working with the teachers in preparing him for a new class and a new teacher by using social stories. He will of course still have the familiarity of his support teacher who will follow him throughout school for as long as she is needed. He will also have the familiarity of his friend. A lovely little boy who has stuck with him since the start. He’s not at all fazed by his behaviour and neither is his lovely mum. I wish there were more people like her!

This morning was a difficult one.

Lots of spitting, shouting and door slamming and that’s before we got through the front door!

On seeing his ST, he shouted “DON’T WANT YOU!!” and hid behind the door.

We know he likes her and when he’s in a good mood, he cuddles her. But I know how I feel when he says such things to me.

I decided to leave her to it as sometimes my presence makes things worse.

The last thing I heard him say as I walked towards the gate was “POOEY WEE WEE FACE!” and then he let out THE loudest raspberry.

THBPBPTHPTPFFTTHPTPTH!!!!

It’s going to be a long few weeks… best get some beer in!

I’d be interested to hear about your experiences with your autistic child and mainstream school, especially the end of school year.

Photo Credit – Jeff Golden

The thing about being autistic is that you gradually get less and less autistic, because you keep learning, you keep learning how to behave. It’s like being in a play; I’m always in a play. ~ Temple Grandin

 

 

 

World Autism Awareness Day

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What Autism is

Autism is a lifelong developmental disability affecting how people communicate and experience the world around them.

It’s not always obvious that a person is autistic just by looking at them and because of this it is often referred to as a hidden disability.

Everyone with autism is different.

What Autism Isn’t

Autism is NOT the result of bad parenting.

Our son is almost five years old and he was diagnosed with autism a few months ago.

The conclusion of a year and a half’s assessment was Autistic Spectrum Disorder and our feelings were a mixture of relief, sadness and determination to do all we can to make our son’s life the best it can be.

I have learned so much about autism over the past year and a half. I’ve recognised traits within myself, as I’m sure many other parents of autistic children have. But while I fully understand my son’s struggle with an overwhelming world, living with it and being able to cope with his challenging behaviour are two entirely different things. I know what works for me but I have a lot to learn about my son.

From experience I know how judgmental people can be. Most of it comes from ignorance and I hope that today being World Autistic Awareness Day  will help people to understand autism a little better.

As the mother of an autistic child I would ask this of people.

When you next see a child screaming and shouting in a shop please don’t jump to the conclusion that this is a naughty child/bad parent situation.

Think before you pass judgement.

The next time you see a mother close to tears because her child is clinging onto the school gate, screaming, shouting and kicking out – don’t judge her as a bad parent who has no control over her child. The child could be autistic and having a “melt-down”. When an autistic child has a melt down in public it is embarrassing for the child’s parents or carer. It is not a tantrum. There is a distinct difference between a tantrum and a melt-down. With a tantrum, the child has some control over their behaviour. A melt-down is a total loss of behavioral control.

In this situation the child needs help from the parent or carer and they, in turn, can do without judgmental attitudes.

Think.

Maybe you could help.

A kind word or act.

‘Are you OK? Is there anything I can do to help you?’

You have no idea how I have longed to hear these words…

It’s never happened.

Can you even imagine how it feels?

For me the problem isn’t with autism but the people who don’t understand it.

The world is a better place for autistic people. If you were to take away autistic people from the equation we would never have known Einstein, Mozart, Issac Newton, Charles Darwin and Michelangelo. All geniuses and all believed to be autistic.

S is quirky and I love that about him.

Sometimes I am mentally exhausted by it all but it’s up to me to find a way to cope. Being a parent is the most important job you’ll ever do. Being the parent of an autistic child is both challenging and rewarding.

In the space of a few seconds he can go from laughing his head off to spitting at the wall. It’s a roller coaster. It’s one hell of a ride and one thing is for sure – it’s never boring.

It is estimated that more than one in a hundred people are autistic. You will most likely know, or know of someone, who is autistic.

Autism is NOT an excuse for bad behaviour. It took a year and a half of in-depth tests to diagnose S. It has taken a number of professionals to conclude that my son is autistic so please don’t belittle it by presuming that it is an excuse for bad behaviour.

One thing I’m sure of is that intolerance is learned. Go into any nursery or infants school and you will see how accepting children naturally are of each other. We can learn so much from our children if we only take the time to observe them.

Any sadness I feel is about how society will treat him. I am not sad that he is autistic. Nor do I mourn over what could have been. This is who he is and I’m proud to be his mum.

Tonight he will go to bed. His dad will read him a story. Ten minutes later he will shout for me. I will go in and lie down next to him. We will talk for a while. He will put his arm around me and hug me tightly. I will say, ‘I love you my little boy’ and he will sigh and say, ‘I love you my little girl’. Then he will remove his arm and say, ‘You can go now’. Dismissed – just like that lol

Our son is autistic.

But that’s only part of it.

He is an amazing human being… I just wish that everybody could see him like we do.

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I like the concept of the world lighting up on this day of awareness because he certainly lights up mine.

If a member of your family is autistic – find out as much as you can about autism. Understand them and help to dispel the myths and raise awareness.

I would love to see a time where differences are not only tolerated but embraced. Not only for my son but for every autistic child and adult.

Thank you for reading.

“Through the blur, I wondered if I was alone or if other parents felt the same way I did – that everything involving our children was painful in some way. The emotions, whether they were joy, sorrow, love or pride, were so deep and sharp that in the end they left you raw, exposed and yes, in pain. The human heart was not designed to beat outside the human body and yet, each child represented just that – a parent’s heart bared, beating forever outside its chest.” ~ Debra Ginsberg

Light bulb Photo Credit

 

 

 

 

 

 

 

 

 

We All Shine On ( A Diagnosis of ASD )

The phone call that we were waiting for came yesterday.

It was the paediatrician confirming a diagnosis of autistic spectrum disorder for our little boy.

I’d expected it but I was ready for a fight if it didn’t happen.

Now it has happened and I have all these emotions going on.

One is sadness, but not because of the diagnosis. I’ve known there was something different about S from birth and I suspected autism when he was a toddler. No, the sadness is because I know that there are judgemental people in the world and I can’t protect him from their ignorance and prejudice.

But I can make sure that he is equipped, as best he can be, to cope with it.

This diagnosis will mean that he gets all the support that he needs. Because he has an early diagnosis this will give him the best possible foundation to be able to build coping skills in order to thrive in an overwhelming world.

I don’t see autism as being a label. I see it as being the reason – an explanation.

S will come to us one day and ask ‘Why am I different?’

We can tell truthfully tell him why and that he is not the only one – there are millions of amazing people just like him. A group of people who are different but by no means less.

I have read so many blog posts and tweets from parents who are struggling with the diagnosis process and unsympathetic schools. My heart goes out to them, but I have to speak as we find it and our experience has been 100% positive from word go. All the therapists, doctors and teachers have been so supportive. We have so much to be thankful for and we’re are very grateful. It’s half the battle won when people are on your side.

At the moment, the diagnosis is for us in order to help him get the best out of life. It will be up to S what he does with it when he’s older. I expect him to fight it and try to fit in but that’s all part of the acceptance process. You can try as hard as you like to fit in and even succeed in pulling it off to the outside world but you can never fool yourself.

My hope is that he will reach his full potential. He is a bright boy with his strength being in numeracy.

The world is full of quirky people. They give. They inspire. They light up the world.

My children have taught me different things but all three have reminded me how good it feels to laugh. S has a laugh that comes from his soul. It’s infectious, it’s therapeutic. It makes up for the hours spent counting to ten while he whirls through his meltdown. A human Tasmanian Devil if they can be cute.

It will take me a while to process it all but I’ll get there.

Meanwhile I stand easy. There is no need to fight. Mama don’t need to go make noise. It’s done and we know exactly where we stand.

So far, my children (and step-children) have proved to be creative. They entertain. They create beautiful images of moments in time. They make people feel good about themselves. They light up the world by giving.

We’ve yet to see how this little boy’s light will effect the world but with autism, anything is possible.

He lights up our lives with his energy, his joy, his laughter.

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We all shine on
Like the moon and the stars and the sun ~ John Lennon

Sitting, Waiting, Wishing

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Tomorrow is the day that we will find out whether or not S will be diagnosed as autistic.

I don’t need a diagnosis to know it. I’m his Mother and I understand my son but that doesn’t guarantee a diagnosis. It’s not down to me.

I have gone over tomorrow a thousand times in my head.

What if they diagnose him?

What if they don’t?

The scenarios are that they will:

a) Diagnose him

b) Not go for a diagnosis at this stage.

c) Reject autism as a diagnosis & discharge.

For me, only two are acceptable and that’s diagnose or delay because I know that S is autistic. I’ve lived with him for every day of his four and a half years and autism is the only thing that fits.

He has been cleared of any other health issues that could cause his problems.

S goes to speech therapy. He has no speech delay but he does have social communication difficulties.  Last Friday was his latest appointment and we’d spent all week psyching him up for it. We have to do this with everything out of his everyday routine. What we forgot to do was tell him that it wouldn’t be in the usual place…

S was in a relatively good mood as we set off but he immediately realised that we were going in the opposite direction and he shouted out that we were going the wrong way, (one of his obsessions are street names and roads- he memorizes them). We told him that we were going to a different place for the therapy.

Well that was it.

His mood changed and he became agitated. From happy to unhappy in 0.60.

When we got into the waiting room he wouldn’t sit still. He was hyper and talking in a funny voice. After about ten minutes the speech therapist came out and ushered us in. S was non compliant from the word go. He was grabbing things, babbling, shouting, swiping cards off the table, pushing the therapists arm away from him. We were there for about ten minutes trying to get him to sit down but he was too overwhelmed. So we had to abandon the session and she said it would be better for her to go and see him at school.

All this because we forgot to tell him of a change of venue. If that isn’t autism, I don’t know what is.

This is S. This is what he does, but sods law says that the two occasions that he saw the paediatrician during the assessment he was compliant.

It’s my feeling that we will have to wait a little longer and that’s OK with me. Autism doesn’t go away. If he is autistic, like we think he is, it’s part of who he is.

Tonight will be a very long night but I have to accept that at this point, I have no control over what tomorrow will bring.

All I can do is sit, wait and wish for the best outcome for my son.

“Are you ready?” Klaus asked finally.
“No,” Sunny answered.
“Me neither,” Violet said, “but if we wait until we’re ready we’ll be waiting for the rest of our lives, Let’s go. ~ Lemony Snicket – The Ersatz Elevator

Image Credit Gettys Girl

Everything is Changing

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Some people get bored with routine, others struggle to function without it. S fits into the latter. As do I.

On Tuesday, S’s headmaster informed me that they have appointed a Special Support Assistant for him. The good thing is that the lady, Mrs H, already works at the school in Year 2 and S is familiar with her.

Mrs H will start on Monday of next week so from now on it’s about easing S through the transition of Mrs C, whom he loves and has bonded with, to Mrs H.

I met Mrs H for the first time this morning. We’re due to have a formal meeting RE Statement on Wednesday but she wanted to introduce herself. Because I wasn’t expecting it (and I was having a menopausal morning from hell) I found myself waffling on in-between hot flushes and was on repeat mode. She was smiling but it looked a little forced as if she was thinking, “Fruitcake alert, someone remove this madwoman!”. Of course, I’m not mad, not really – well maybe a bit. It’s genetic…

Truth is that routine is as important to me as it is to S and any changes, good or bad, upset me. I don’t have meltdowns like S but I do get upset and my brain won’t hold onto information. For this reason, I always like to have OH with me during such meetings so that important information isn’t missed or misinterpreted by me. OH wasn’t there this morning so I was lone wolfing.

I will be honest, it’s not only S who has formed an attachment to Mrs C, I have as well and I didn’t realise how much until this morning…

I have described Mrs C in previous posts. She’s bubbly and caring. Children adore her and it’s easy to see why. She gets down to their level. She thinks absolutely nothing of running around a playground with a child, just so he can “let the silly words out”. Or lying on a cold, hard floor to have a conversation with a child who refuses to get up. She understands autism and sensitivity. She understands my son and his needs. She understands me as a Mother with a child who has learning difficulties.

She understands my difficulties. I told her how I struggle with crowds and she understood, telling me that she finds it hard to sit in the staffroom when it’s full. She doesn’t just see S as needing support, she sees us as a family needing support. I know she’ll be there in the background but it’s really upsetting me that we have to move on. I know we do because ultimately this is about S and his future.

Mrs H told me that although he acknowledged her this morning, he ran to Mrs C as he always does. She knows that it isn’t going to be easy.

My heart also goes out to Mrs C. It must be so rewarding when a child like S forms a bond with a teacher. S “loves” Mrs C. She is his “best friend” and I know that it will be hard for her to go through this transition as well.

For months, S has been going into school via the main entrance, being buzzed in by Mrs N, the receptionist. He loves that, it’s become routine. Off he goes through the door into the hall, swinging his bags – in search of his friend, Mrs C.

From Monday, we are to start going in via the playground. This was my suggestion but on thinking about it, it might be too much for S to cope with as well as another change to his routine so I will ask to postpone that for a week or two. In fact, I’ve just phoned school to ask to speak to Mrs H about it.

I came home this morning and cried. Actually, I started to fill up while I was with Mrs H. Just the thoughts of the transition made me emotional. I was so relived to get home, close the door and cry.

I feel for Mrs H. This won’t be easy for her. Mrs C is a hard act to follow and she will have to work hard to gain S’s trust but if she manages it, she will find her way to my son’s heart.

Meanwhile I have to try and cope with my own difficulties with routine. It’s not easy. Sometimes my life feels almost normal but it only takes the slightest change to send me spiralling into the land of confusion. But all this comes second to S. It’s his life, his future and I, despite my problems (or maybe because of them) am determined to make sure that he reaches his potential.

Any change, even a change for the better, is always accompanied by drawbacks and discomforts. ~ Arnold Bennett

Photo Credit~ Ed Dale

Do You Hear What I Hear?

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Christmas is is a magical time for children but for those with sensory issues and ASD, it can be incredibly stressful.

The unfamiliar sights, sounds and changes to much needed routine means that it’s a challenging time for children and parents… I’m on my tenth migraine of the season. Fa la la la la, la la la la!

S struggles massively with sensory overload and change of routine so we have been warning him in advance of any changes. For example, putting the decorations up. The wonderful Mrs C, (teacher and most excellent human being), made us a special booklet, a social story to read to him, so that he would be familiar with all the changes in the school routine in the weeks leading up to Christmas.

It’s a “This is what will be happening at school over the next few weeks and it’s OK” deal. We read it to him every night, after we’ve read Foxes in the Snow for the millionth time. Not that I’m prone to exaggerating…

I had concerns over how he would cope with the Nativity. I say concerns… I broke out in a cold sweat just thinking about it…

Mrs C kindly reserved us a couple of seats near the door to lessen my discomfort in crowded areas and for a speedy exit should it be required if S kicked off, but I needn’t have worried because she sat at the back with him. She had a bag of cars and numbers – all his special things to keep him calm. S loves singing but doesn’t like the noise – I noticed that his party hat doubled up as ear defenders! Once reassured that he wasn’t distressed, I could relax a little and enjoy the show. Who knows, maybe one day S will make it onto the stage… *swigs from the gin bottle*

OK, I don’t drink gin on account of my malfunctioning hormones but it reads better than *swigs from a beer bottle*, it’s slightly more ladylike…poetic licence and all that.

The next event that had me torturing myself with worry was the Christmas party but we were assured that he’d had a good time. He came home clutching some numbers from school. His teachers recognise his need to have these numbers in his hands or pockets. In these last few weeks, he’s needed them constantly. Numbers have a calming effect on him. Unlike me where they have the reverse effect. *twitch*

Also, it seems that the school trip to the pantomime went well.

OH NO IT DIDN’T!

You know you’d have done it too hehe

Actually it did go OK – he tolerated it with the help of Mrs C and her bag of tricks. I am immensely proud of my little guy.

He tolerated being in the hall for a carol service with the help of a magnetic letter and number board.

The negative side to it all is that there have been a few incidents of pinching and scratching at school. These incidents seem to happen when he is in a group or crowding situations, especially at the end of playtime. I understand this only too well but Mrs C has removed this stress after each break time so the incidents should lessen.

Mrs C wrote in his home-book that when he’s stressed he babbles and shouts, so she’s taken to running around the playground with him to “let the silly words out”. I can just imagine them both racing around the yard shrieking! She instinctively knows how to calm him down.

This week is emotional for us because, as of January, Mrs C will no longer be his one on one. S has been granted a Statement of Education and interviews for a replacement to work with him have taken place today.

S has a bond with Mrs C and we think she’s absolutely fantastic. If ever there was a teacher who understood children with special needs, it’s her. I knew she was special when she came to meet S and me in the summer holidays. I knew he’d love her when he sat on her lap and cuddled her.

But this is the way it has to be. He bonded with Mrs C and there’s no reason why he won’t bond with anyone else. She says hopefully.

We chose a gift for her from S that she could always connect with him…

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He had an obsession with the story “The Owl Babies” when he started school so we wanted to get her something owl related, so we bought her this mug…also we thought it more appropriate than The Omen DVD’s which was the obvious choice… IT’S DAMIEN FOR A REASON!!!

Mrs C doesn’t know that this blog exists, Thank God. I mean, I’m sure that she’d be interested in the stuff about S and herself but less so in my hormones and the flatulent lurcher. But don’t worry, she’ll know how we feel. We can never, ever thank her enough for what she has done for our son. She goes the extra mile, she’s one of life’s good souls.

We don’t know what the future holds for S. He will face lots more challenges as he goes through his school life, that’s when this early foundation of love and support will make a difference. In my opinion, it will make all the difference.

I had an e-mail from a friend who’s son is autistic. She quoted what the doctor had told her when she received the diagnosis.

” It’s about making him the best he can be”.

I cried when I read that.

It’s about making every child the best that they can be but, for those with learning difficulties, it’s more challenging but ultimately rewarding when you know that you have helped them to reach their potential.

We hope that in years to come, Mrs C will look at the owl and be reminded of a special little boy who’s heart she touched and in whose life, she made a difference.

“The path I travel is lit by those who came before me, and it will shine brighter for those who follow me. See my potential.”

Image Credit

Gratitude

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Despite our initial concerns about S starting school he has thrived and continues to do so. To date he has earned not one, but two Headmaster’s Awards! The awards, for numeracy and for sitting still, (an achievement for S), are fantastic in their own right. The added factor for me is the fact that he personally went up in assembly to receive them. My only sadness is that we were not there to witness it.

Everyday I wake up and silently thank my lucky stars for what the school is doing for our little boy. These people genuinely care about him. Being away from him for six hours a day is hard, but it comforts me to know that he is with people who love him, maybe not as we love him, but love none the less.

Little man is known in and around the school. Not a day goes by without somebody saying hello to him. Sometimes he can only manage a grunt in response but they seem to take it in their stride.

After weeks of desensitisation we are now able to walk onto the playground. S chucks his bags at me and runs along the figure of eight ‘road’ that’s painted on the floor for the bikes. He does this every day, it’s part of his routine. If for any reason we can’t do this he becomes upset – and audibly so! The older children stand there and hi-five him as he whizzes past. If anybody, (child or adult), stands on this road, therefore hindering his whizzing, he stands and stares at them until they realise and move!

Mrs C meets us every morning and she’s always smiling. It’s nearly half-term and she still hasn’t quit! Not only that but Mrs B, the reception teacher, (wears really nice tops), hasn’t been admitted into a secure unit yet! I was certain that one of them would be weaving baskets by now!

I’ll have a shed load of whatever they’re on please!

Aside from her duty of care for S, Mrs C never fails to ask how we are doing. She knows I struggle with crowded areas, and she is supportive of my need to stand back from elbow wielding yummy mummies and pushchairs galore –  I am so thankful for this, she’s an amazing lady.

Mrs C told us something this morning that melted my heart. It’s something that I’ve been thinking about all day…it’s beautiful…

She said that S fell over in the playground yesterday. It was a ‘man down’ situation, as in he lay on the ground and wouldn’t get up. So Mrs C went and lay down on the floor with him. Then the headmaster, who happened to be on the yard, also went and lay down on the floor next to him. Children carried on playing around this scene as if there was nothing unusual about it at all. After a while Mrs C said to him “Shall we go and play again?” and with that S got up and ran off to play. Situation defused!

How wonderful is that?

These days I try to focus on the positives in life. Maybe it’s an age thing or maybe losing my parents really brought it home to me that life is transient, so why waste something so precious on the stuff that doesn’t really matter. Instead of dwelling on the bad things that people say or do I try to think about the good things. I think about two teachers selflessly lying on a cold and dirty playground floor in order to comfort a child – my son.

This is the big stuff – the stuff that really matters!

I have a lump in my throat as I’m typing this… The depth of gratitude that I feel for these people is something that I struggle to express in words. No matter what the results of the ongoing assessment brings I know he’s in the right place – with the right people and that is a weight off my mind.

The other night I lay in the bath and listened to my boy’s angelic(ish) voice, singing a song of love and caring for others and I’m not ashamed to say that the tears mingled with the bubbles but they weren’t sad tears, oh no, they were the tears of a mother who has gratitude in her heart.

“At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us.”~ Albert Schweitzer

Photo Credit

Settling In

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S is now half way through his third week at school and, on the whole, it’s a positive report.

There were two weeks of transition. The first was until dinnertime and the second week included dinnertime. This week, being the third, has been full time.

Last week my concern was that he wouldn’t cope with dinner time, I struggled with this at school. The overwhelming noise and smells were too much for me. So I was concerned about how S would cope, but I needn’t have worried because Mrs C had it all in hand. She took pictures of him in the hall at dinnertime to reassure me and he looked fine. On closer inspection, I noticed that he had his ‘special’ pencil case with the pictures on, (Mrs C made this for him so that he always knows what he is going to be doing next). Also on the table was a number, as Mrs C knows that numbers are his obsession, strength and comfort. Also the hall wasn’t as full as I’d imagined it would be…

S has a little book which is for Mrs C and us to write in. She tells us about his day, more so his accomplishments. It’s a very positive book. It’s full of bright stickers which are another of his obsessions. He comes out with them all over his jumper as well!

Little man has had a few days where he’s struggled but mostly we’ve copped for it picking him up and on the way home but I’ve found a way to distract him…I’ve child proofed my old tablet and he can play Numberjacks on it. The word ‘Numberjacks’ calms him down if you do it before he goes into meltdown mode, It’s proving to be a lifesaver for me!

We had a meeting last Friday with SENCO and Mrs B, (the reception teacher). This was basically to go over his IEP, (Individual Education Plan). It was a very positive meeting, Mrs B had a few funny stories to tell us about S and I’m glad that, like us, he makes them laugh too because he is a likeable child. They all seem fairly convinced that he will receive the statement. But we have no complaints of how they have been working with him so far, in fact we are delighted!

This week he started full-time and we knew that this was always going to be difficult because S, like most other 4 year old’s, gets tired in the afternoon. So we have had a few erm, eventful days, put it that way. Yesterday he sat in the corridor with Mrs C and listened to the assembly going on in the hall. It will be a long while before he is able to tolerate the experience itself but for now he’s happy enough to look on.

So little man is officially ‘corridor king’ at 4 years old!

Unfortunately his school week stops here because he’s caught the tummy bug that I’ve had. He’s spent today lying on the sofa, covered in a blanket and surrounded by his beloved numbers. I hate this part of parenting because it means that I have to see my child in pain and as with most viruses, there isn’t much that I can do to stop it. I did however have masses of cuddles and a bottle of Calpol on standby. I had to suffer children’s TV for most of the day, but it was a small price to pay to give him a little comfort. I did manage to get a couple of hours of Sharon, Tracy and Dorian in Birds of a Feather when he fell asleep. Alas, he woke up when Bergerac came on and it was back to the cartoons.

I phoned school this morning and gave them the regretful news that S won’t be in until next week and I might have been imagining it, but I think I heard someone WHOOP in the background! Mrs C did look a bit frazzled when we picked him up yesterday…maybe it’s exhaustion of two and a half weeks of one to one with our cherub or maybe the poor soul is about to come down with the lurgy herself!

So we’ll see what next week brings…