This time around its different

Hi folks

I am sat here thinking what on earth am I going to write about? I’ve been stuck in a bit of a writing funk I suppose. Not wanting to pick up the laptop to share with you what's been happening these last few months. But today I have decided to give it a go...

Back in September the dude was too anxious to return to his school after the long summer break. If I think about it had been coming for a long time but inevitably when things like this happen it turns everything upside down.

My life these last few months has completely focussed on him. He kind of went into what can only be described as an implosion. It was scary, and all those feelings flooded back to me where I felt out of control and short of breath, I was constantly nauseous and felt quite alone in all this.

You see we have been on this path before and it didn’t end well for me.

I ended up becoming ill, once he had recovered. I had held it together for months and then once I knew he was OK, well, I could hold on no longer.

But this time things have been different.

Last time I had to give up my job when it happened, this time I had no job to lose.

Last time I wasn’t looking after myself. I ate all the wrong foods and had nothing for me. This time I am in a much better place with my health, I’ve lost weight and I started running a few months ago. So now I can put my earphones on and leave all the crap behind as I shut the door and get out of breath and sweaty for half an hour. My brain switches off and just for a brief moment all that matters is the muddy puddles I am running through and my heart pounding through my chest as I try and regulate my breathing. I wobble and its not pretty, but I don't care anymore! I do it for me and no one else.

Last time I felt alone, and weak. But this time I have found some amazing professionals that are helping us to get through this. People who finally really get my son and are as passionate as me about getting him the support he deserves. I cannot tell you the difference it makes knowing that someone has got your back.

Last time he was unable to tell us what was wrong. I had to unpick his behaviour and be his voice. Sometimes being ignored and often feeling like his voice held no authority as it was coming from me. And after all I am just his mum!! But this time the dudes voice is being heard loud and clear. We are making sure of that. His voice is the most important at that table, even if he isn’t able to make it to the table, his voice still needs to be heard. And with the help of some amazing people I am certain that this will happen this time.

Last time I felt overwhelmed by the task at hand. This time I know that there is a light at the end of the tunnel. The path is bumpy and long, but I know if we have done it before, we can definitely do it again!

Last time I was willing to be walked all over. I was a newbie mum. Uncertain of how much of a battle it all would become. Unprepared for the judgements and poking around that would happen because of the people who were meant to be helping us not knowing what to do. So, I felt under the spotlight, confused about whether or not my gut instincts were wrong, and I was persuaded to do things that ended up having an adverse effect on my son. This time however I am stronger. I still find any confrontation challenging, it drains me emotionally and I am exhausted with it all some days. But I know the system better now. I understand what I need to do in order to get my son the support he needs. I am less willing to accept things at face value and recognise the strength in having a team on your side. I don’t need to do this all on my own this time.

Because my son deserves the best.

My son deserves to be happy.

My son deserves to be supported by people that truly understand the difficulties that face children like him.

My son deserves future in which he can live as independently as possible.

So right now, all my energy is focussed on the goal of getting him better and finding a school that can meet his needs as he faces becoming a young adult with all the complications that brings.

This is where we are at now. This is my life...6 am emails, assessments, meetings, sleepless nights, medication and banging on doors to get answers.

And you guys all deserve to know that if you are going through something similar, you’re not alone and there is always a light at the end of the tunnel.

And I promise I will make more of an effort to start sharing my thoughts again with you.

This time around I will not give in, I will not take no for an answer, and I will be his voice for as long as he needs me to! 

Mrs M x

What to do if you have concerns about a child in your classroom

I have been privileged to spend many years of my career working within the primary education sector and early years settings to support staff who work with children on the autism spectrum. It can be one of the most rewarding jobs and yet also one of the most challenging too, as each individual child on the spectrum is unique, and therefore they all have such different needs.

Add to this the fact that many children’s challenges are hidden from the outside world and it becomes easy to see why people can focus on the things children with autism can’t do, their deficits if you like. Instead of us looking at the child behind the behaviour, we can find ourselves stuck in a cycle of negative reaction strategies that actually serve to aggravate the child even further.

Many approaches I have seen over the years tend to ‘treat the behaviour’ and focus on the child’s problems. But we should be taking the time to find out what makes these very special children tick, what their strengths are, how they learn, and how we can make reasonable adjustments to the environment in order to meet their needs.

So often children on the spectrum are treated like round pegs in square holes. Our environment and demands to conform to our view of the world can chip away at them and doesn’t take into account their individual needs.  

Or to look at it another way - imagine holding a ruler in your hand. You can bend it this way and that way time after time…but eventually the plastic will become overstretched, worn out and one day it will snap.

Children with autism can quickly become overwhelmed and over stretched with their learning environment if they are constantly having to bend and mould to fit into our world. In the long term this can lead to anxiety creeping in and taking hold of them, which is proven to drastically affect their mental health as they get older.

So over the next few guest blogs for Kathy I will be looking at how we can effectively support children with autism in our pre-schools and classrooms. From early intervention; to liaising with parents, understanding behaviour and sensory needs to language development and communication. I will talk through my experiences, and share with you the things that have worked well for me, and also those things that didn’t work so well! And to be honest, sometimes the things that have taught me the most have been times when I have got it wrong!

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So to start with I will look at what to do if you have concerns about a child in your setting -the key behaviours to look out for, and then how to broach any concerns you may have with parents.

The National Autistic society state that young children with autism may exhibit a range of behaviours that could include -

·     difficulty relating to others and making friends

• difficulty in communicating (some children may not talk at all)
• being unable to engage in imaginative play.  

• obsessions
• fears
• a lack of awareness of danger
• ritualistic play and behaviour
• inappropriate eye contact
• hypersensitivity to sound, light
• spinning objects
• hand flapping.

(National Autistic Society May 2016)

However not all children with autism will display all of these behaviours. Often children on the spectrum can mask their difficulties for fear of standing out. This is especially true with girls. They can often blend in very well and follow the lead of others to get through the day and can be very sociable with their friends too.

Many young children on the spectrum will have some form of communication and language difficulty. Some children may never use spoken words or they can develop language later than the rest of their peers. Other children could use echolalia to communicate (where they repeat words and phrases they have heard, sometimes in an accent). And some children who have Asperger’s can have what appears to be good level of language, yet they may not necessarily understand everything that is being said. They can take things literally, out of context, or not always see why your joke is so funny.

There are loads of things we can do to help children on the spectrum ‘find their voice’, and this is vital whatever level of language they have. As just because a child doesn’t speak, it doesn’t mean they don’t have anything to say. I will look at possible strategies another time.

Lots of children with autism may also have difficulty with ‘sensory processing’. Simply put this means they can smell, hear, and feel things in a different way than we do which can lead to them being overwhelmed by their environment, or even leave them seeking sensory input. This can make them appear hyperactive or they can’t sit still. But young children won’t always even realise what is happening to their body, so it’s our job to watch what their behaviour is telling us instead of labelling them as a naughty child.

Working with young children everyday means you are in a unique position to be able to make a difference to children whether they have a diagnosis or not. As early intervention and support is vital. I have found that over the years I have always followed my gut instinct. Sometimes we just know, if a child isn’t hitting their milestones and there is something just niggling at you. Speak to your line manager/ SENCO or class teacher.

And then it’s vital to open the lines of communication with the child’s parents. Here are some tips…

·        Keep calm and friendly -This can be very daunting to have to do and you may worry about what they will say in response. But chances are they may have been worried about their child for a long time already, as no one knows a child better than their parents. They may have also been expecting you to raise concerns at some point.

·        If they don’t react well- Keep calm and polite, they may just be in shock and it could be a defence mechanism. Have the support of a co-worker there with you, and give them time.

·        Keep it informal -So ask them to come in for a chat, offer them a drink and don’t sit around a desk like your planning on interviewing them. Believe me they will be more nervous than you and probably emotionally drained with worry themselves.

·       Keep it private, and positive where you can - Make sure it’s done in private and that you have lots of positive things to say about their child too. There is nothing worse as a parent than sitting around a table with professionals telling you all the things your child can’t do, and how he causes them such a problem. As a parent that is heart-breaking to have to hear.

·        Keep an eye on the time and don’t talk about their child if they are in the room with you -Keep it brief, to the point and informative, offer childcare if possible so their child isn’t in the room listening to the conversation. Try not to give too many opinions and stick to the facts as you see them. And most importantly keep it friendly. Parents can easily become defensive if they sense in your tone that you are getting at their child in some way.

·       Be prepared -So maybe prepare some notes that include their child’s strengths, and how he overcomes any challenges he seems to face. For every negative try and give them two positives so they don’t come away with a feeling of dread about their child’s future. But be honest with them as the difficulties you have noted about their child do need to be addressed in a sensitive manner.

·       1) Discuss the issue 2) Provide possible causes and 3) Plan strategies that could help-

So for example -  

1)     Discuss the issue- You could say you have noticed that their child can find Storytime a little tricky and can become a little wriggly and distracted
2)      Follow that up with what observations you have done- You have observed that it could this be because they are struggling to follow pace of the language, or maybe they may need a firm back to lean on to feel more comfortable whilst sitting, or that maybe 6 OR 7 minutes is enough for them to sit for and any longer than that can cause them to lose focus
3)      Finally discuss the strategies you have put in place- So could say you that have you have implemented strategies such as a fiddle toy, provided visual aids or puppets to go with the story which helps their child to engage. You could have tried a chair or cushion to sit on instead of the carpet, and you now ensure the carpet session doesn’t exceed 7 minutes

Then once the lines of communication have been opened, keep those links going with weekly ‘catch ups’. It doesn’t need to be much, but a discreet little thumbs up at pick up time, or a little note in their reading book can make all the difference to anxious parents. Because no matter what the outcome is, the parents will need your support and help in coming to terms with this unplanned reality they find themselves in.

Next time I will look at how we can adapt the early years learning environment to accommodate children on the spectrum. Including how the layout of the classroom can affect a child, how visual displays can aid communication and the use of timers can help children access learning.

Mrs M

This blog was written as a guest post for Kathy Brodie (Early years teaching and coaching) and can be found here on her website

http://www.kathybrodie.com/guest-post/supporting-children-autism/

Autism and self injury

I can remember like it was yesterday the day we were told that my son had Autism, despite it being a few years ago now. And I have to say that even though I knew in my gut that the doctor was going to confirm my feelings (and in many ways wanting that one word to come out of her mouth after years of feeling judged as a parent) that when it actually happened, well it hit me like a tonne of bricks.

I didn’t know how to feel, what to do, and how to react.  I was numb.

The hubby and I went to the pub on our way home and we just sat there, speechless. I can even remember the food I ordered and didn’t eat! (Welsh rarebit.)

In the days that followed it began to slowly sink in, and really nothing had changed to be honest. Except deep down I felt a sense of relief that I had been right all along. And at the end of the day it was just a word. My son was no different, he was still him. Life ticked on as usual.

But what I did next I presume all parents do at one time or another - I found myself sat with the laptop on my knee, and I googled Autism. Despite having many years of experience working with children on the spectrum – well I just couldn’t help myself.

And oh my goodness what a load of crap there is out there on the internet. It’s enough to scare parents half to death. So much misinformation and ignorance to be found around every corner. I think if I had took notice of everything I read I would never have stepped out of the house with my son ever again. As it made me want to swaddle him up in bubble wrap to protect him from all the ignorance out there.

I also vividly recall sort of ticking things off like a list; well yeah he does this, and I suppose sometimes he does that too, oh but no not that - he never does that I said to myself!

And I remember stumbling across self-injurious behaviour and thinking thank God he’s never done that. Children who do that must be really ‘severe.’

Well, I was wrong!

That’s the thing about Autism I have since learned from my son. Autism kind of moves and shifts, it confuses and lulls you into a false sense of security. Its 'symptoms' can increase and decrease according to its environment. And ‘High Functioning’ didn’t mean my son got a free ticket to bypass the darker, more worrying and far less talked about sides to Autism – like self-injury and anxiety.

In fact I think the label he was given that day was highly misleading in many ways. Because I soon realised that his anxiety would increase to such a pitch that it would almost cripple him. Please don’t get me wrong I love my son more than life itself. Yes he is Autistic and I don’t want to change who he is - he is unique and wonderful I am his biggest fan believe me. But if you told me if I could lessen his anxiety somehow then my reply would have to be - where do I sign up? And if the doctor had told me that one day in the not so distant future my son would be so anxious about school that he would scratch his hand so badly it would bleed, then I would have cried and blubbered then and there in her office. Because no one wants that for their child, Autism or not!

So to my horror last year we found ourselves drowning in an ever spiralling whirlpool of anxiety that led my little man to become so desperate that he was indeed driven to self-injure at school. This vicious cycle engulfed him like huge waves lapping on the shore, and I just couldn’t drag him from the darkness. Day after day each new school day led to more and more anxiety, and so it went on - deeper and deeper he seemed to be falling and to my despair I could feel him slipping away from me. I was clinging onto him with my fingernails desperate not to let him go. He’s my baby boy, and every time he wanted to hurt himself it broke my heart. If would have swapped places with him in a heartbeat if I could have, I just wanted to take his pain away.

He became so consumed by his anxiety that he wasn’t capable of learning anything at school. Just the process of going to school was literally draining him. So we had to re assess everything and modify his environment drastically. His anxiety had shifted his world until he was unrecognisable as my little man.  He would pace around the room like a trapped tiger in a zoo.

So we put his world on PAUSE

It was a long and slow journey to recovery, I mean months not weeks! But we had fun- we went swimming and dive bombed in the deep end. We walked the dogs and got wet and muddy, we baked cakes making a right old mess of the kitchen. And yes we learned maths and English - but in his own way, not mine - and slowly day by day he began to laugh and smile a little more each day.

He had started to push against the wave of anxiety that had been engulfing him, until thankfully his hands healed and he got better. Until now, well now it’s just a bad memory. He is at a new school full time and is genuinely happy. So his Autism has shifted again. He approaches things with less negativity because he’s happy.

I knew all along what my son needed to do to get better, the world needed to mould around him. And the people around him needed to be more flexible, following his lead,  and truly accepting him for who he was. Then, and only then he would trust them to keep him safe.

But I am ashamed to admit this, at times I let my feelings be ignored and overlooked because I kept quiet when I should have been shouting from the rooftops. I tried to keep the peace, and I Iet others take the lead in meetings. I came away with regret for not speaking up more. As his mum it was my job to be his voice, to be heard and to be taken seriously - despite the hassle it would bring my way. I had to learn to put that all to the back of my mind, and shout out louder than them to get his needs met. I learnt this the hard way, I got there eventually after a lot of soul searching and tears. But that’s what us mums do, isn’t it. We would do anything for our kids -  we slap on our make up, notepad and pen underarm and ruffle a few feathers!

The whole experience led me to realise that too often our kids are bent so much to fit into our world that they simply snap under the pressure, and this is where they encounter so many problems. Because too often the traditional mainstream education system our kids find themselves in is just so inflexible for kids like my son.

And now I will never take anything for granted or make assumptions about Autism ever again. I will never again think my son isn’t ‘severe’ enough to be effected like that. Self-harm/self-injury effect 50% children with Autism - including my son. And I strongly believe we should be talking about this more than we do. It shouldn’t be something that is only discussed in the GP surgery or at CAMHS.

So as hard as writing this has been, I have shared our story hoping it may have helped you. Don’t let your child be bent to snapping point like I did. It’s truly my biggest regret.

Mums and dads out there be strong at those meetings, be proud that you are brave enough to be your child’s voice amongst a room of professionals. Ruffle feathers if needs be to get your child the education they deserve. One that embraces their differences and moulds their learning around them.

We know what our kids need, we are ‘professionals’ in our own children. So believe in yourself parents and fight against the tide. My son is proof that there is always a light at the end of the tunnel. Our kids have so much to teach us about living in the moment, that the dark days can become distant memories I promise. And I am learning that my son has far more to teach me than sitting down and googling Autism on my laptop any day of the week, all I have to do is learn from him and be strong!