A letter to the people making the decision about my sons future....

Those of you that know our situation will know that my son has been out of school now since last summer. This is a copy of the letter I sent to the Local Authority last month a few days before a panel meeting...

To Whom it may concern,

Today, my sons case is being presented to you, the panel.

And as procedure dictates that I can’t be there to highlight his situation to you in person, I wanted to ensure that the personal side of our story wasn't ignored. Because it doesn’t matter how many professional reports are produced for you today; or how many assessments you read, you will never truly understand the full extent of the trauma we have all faced as a family because of my son not fitting into your education system.

You won’t get to see the challenges my son has had to overcome living as a child with complex anxiety, and the social difficulties he faces due to his autism. How his anxiety affects his every waking moment and prevents him from living his life. Crippling him to the spot and ruling his actions and emotions.

Or how it must have felt for him day in day out attending a school that didn’t understand his needs. A school that tried to bend him to fit into their way of doing things, so much so that he could take no more and snapped. How we all felt as we watched on helplessly as he slid into breakdown mode and shut himself away from the world that he could no longer trust.

You won’t see written in those reports the gut wrenching worry I have felt these last few months as I have had to watch on helplessly, as my son broke in front of my very eyes and there was nothing I could do to stop it.

You see my son is 13 years old and has already had two failed school placements. His mental health is fragile, he has several diagnoses to contend with and he lives in a world in which he finds confusing and unforgiving. 

He has lost trust in teachers, in people in general I think because of it all, and he has tried to shut himself away from the world…to keep himself safe because he felt so out of control.

He struggled day in day out in a school surrounded by people that didn’t understand him, saw his anxiety as defiance and a problem to be fixed. He tried to tell them he wasn’t coping through his behaviours and actions, but he was ignored. And it broke him. I can never undo the damage that has been done.

But despite all that, he is a young lad who has such potential to achieve anything he wants to. He has an extraordinary connection with animals, he is an avid reader, he whizzes through maths questions, he has a dictionary like memory and he has a wicked sense of humour. He deserves so much more.

He can overcome his challenges and slowly begin the trust the world again because he is the bravest person I know. He wants to learn, he wants to live a full life and he wants to have another go. But without a support system in place around him that truly meets his needs; accepts him for who he is, and recognises this potential he has inside him beneath all that anxiety, then sadly, he will fail to do so.

He is in very real danger of becoming a mere statistic, someone that can easily be forgotten. Too complex to provide care for so it becomes easier to label him as a school refuser and write him off.

But as his mother I can’t let that happen, the right educational setting can be created for him, I know it can.

It’s really not too much to ask!

All he needs is a setting that truly understands anxiety and autism. They need to be experts in the field, he has been let down so often that he deserves this chance. He has as much right as everyone else to succeed doesn't he?

As his mother, I have seen how putting him in the wrong setting not only breaks my boy in two, but it pushes our family to the brink. I am unable to work as I must be here every day for my son. My marriage is strained as the financial pressures take its toll, and we live as a divided family as our two daughters need to live their own lives too and we have to ensure that they don’t miss out on growing up.

And none of this is reflected in the reports you will read today, but this is our reality. We have got it wrong so many times before for my son and I am determined, body and soul, that this will never happen again.

My son deserves a future, my family deserves some support and we, as parents, deserve some recognition for knowing our son well enough to know what is right for him.

We have spent months agonising over schools. Contemplating whether home schooling could be an option, or whether or not he would even manage to access any support ever again. But I can’t give up hope. I need to be his voice while he is unable to speak up for himself and he needs hope that he can have a brighter future.

My son deserves a bespoke package of care that will address his individual needs and in which he will be surrounded by people just like him, offering him a sense of belonging that he has never really felt anywhere other than at home.

He needs good home school communication, and a team of specialists and therapists on site to help him to  learn to manage his anxiety and mental health, and begin to accept his differences and embrace his diagnoses.

He needs a school that recognises his potential and the importance of looking at my sons needs holistically because  his academic needs are just as important as his mental health needs.

He needs a setting that works with parents not against them. Because I am not the enemy!

And most importantly, when we look around a school and get that ‘feeling’… that feeling that every parent has when they look around and just know in their gut that it’s the right place for their child (autism or not.) That feeling that all parents feel instinctively, and which we can’t quantify in any report… well that needs to be acknowledged and listened to.

Our understanding of our son and our expertise as his parents needs to be embraced and seen as just as important as any other recommendation you may read today. No matter whether the school is out of area, costs more than you’re willing to pay, or is independent. If it's right for my son, then that is all that should truly matter.

Because my decision for what is right for my son as his mum isn't based on budget, distance, catchment area or policies. Plainly put; it is based on what my son needs… and to me it really is that simple.

So thank you for taking the time to read my letter today, and I hope that if nothing else, it has given you pause for thought and a brief insight into how it feels from our perspective during this difficult period in my son’s life.

I will never, ever give up hope, because my son deserves to be happy.

He deserves a future!

And just because he is autistic doesn’t give anyone the right to simply write him off as a mere statistic or make him feel that he can’t achieve anything that he wants to.  

I know that if we can work together on this, then anything is possible. And that is what my son deserves right now... a chance to succeed!

Yours Sincerely

Mrs M

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/