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Guest post

How the long wait for a diagnosis affected my journey as a mum

This week the House of commons will be debating Autism Diagnosis Waiting Time (for details see here), so it seemed very fitting that Mrs M. should share with us her journey as a mum, waiting for a diagnosis. I thinks she shares some very good advice here and, as ever, gives a moving and valuable insight into how this can affect every facet of family life. 

I vividly remember all those years ago when I first became a mother in my early twenties, nervously holding this new little life in my arms. She was so tiny and vulnerable that I became completely overawed at how much she depended on me. I was meant to have all the answers. I was meant to know what her cries meant, what to do when she wouldn’t settle and how to relieve her colic. I was overwhelmed with it all in those early days settling in at home.

mum-and-babyHowever there was one thing I knew for certain back then; that I loved my little baby more than life itself and so instinctively I learned to know what she needed. I needed no guidebook or lessons to tell me what to do, it just happened naturally.

Then in my late twenties, we were blessed with another daughter and a son. Life had become full, crazy and yes at times a little chaotic – but we had such hope and dreams for the future.

My girls were happy carefree little things, full of laughter and smiles. However my little man worried me. Because even though he was hitting most of his developmental milestones he was hard work. Many aspects of his behaviour didn’t fit any checklists or tick boxes for kids of his age. He was a handful as a toddler and ran rings around me at times I have to say. And initially I dismissed my worries, thinking he would soon grow out of it.

However I was soon to realise that it was far more than just your typical boisterous behaviour that was testing my skills as a young mum. I didn’t know it all those years ago, but I was at the start of a new phase of motherhood. One that would turn our whole family life upside down, and my role as a mum would take a whole new road completely.

So fast forward to now – Here I am, older and wiser. I’m now in my mid (to late)-thirties and my son was diagnosed with Autism last year at the age of 10. After all those years.

Altogether it took almost 5 years on the waiting list for him to be assessed.

So I think that’s what makes my journey, and many other mums like me up and down the country kind of unique really. Because I can’t think of any other condition where parents have to wait so long to get the help and answers they need. And I certainly found that my relationship with not only myself, but with my son and my family was pushed to the limit because of it. Because I feel like my early thirties flew past in a blur of stress and uncertainty. I got lost somewhere in between there and now. Let me explain-

boy-waitingI doubted myself constantly because I knew deep down that my son had so many hidden challenges and for years I felt like no one believed me. I knew it was more than the terrible twos, threes or fours. And it certainly wasn’t middle child syndrome. I could see that my son was increasingly struggling with so many aspects of his life, but he wasn’t able to express what was happening to him inside. So instead he would play up, resist, fight or become upset at the smallest of things.

And eventually I began to feel like every instinct I was having as his mum was wrong because I felt like I couldn’t help him and people were judging me as a bad parent that couldn’t control her kid. So many thoughts were swirling around my mind-

Why didn’t people believe me?

Why did they think he was just naughty?

Why could he be good all day at school then the minute I walk in the room he would lash out?

Was it me, were they right, and was I too soft on him… Is that what the problem was?

And this went on year after year after year. I became exhausted, confused and tired. There are even occasions I can remember when I had been on the receiving end of one of his meltdowns after school, and I would keep it to myself because I felt so alone and just couldn’t face the criticism from people who thought he was just naughty. I felt ignored as all I ever seemed to do was make excuses for him, desperately trying to make people see what I saw.

Because you see I knew.

I just knew that when the day came for him to be assessed that everyone else would finally see what I had known all along. That my son was Autistic.

And then when that day did finally arrive I felt such a mixture of emotions that I just didn’t know what to think. I was relieved on the one hand but deeply saddened on the other as there was so much finality in those words – Autism. All I could think about was that it’s a lifelong condition, and the future seemed so uncertain for him at that point.

But in the months that followed his diagnosis I came to see that there was truly no need for me to be saddened by the label that he got that day. Because it hasn’t changed him, rather its changed how others think of him and that the key to his happiness.

Yes he has a label now, but it’s the right label. Not the ‘naughty’ label, or the ‘spoilt child’ label. And it has freed me of the shackles I felt for years too. I felt like I walked around with a ‘bad parent’ neon sign flashing above my head half the time as people stared at us in the supermarket. Or I was the ‘pushy parent’ when he refused to go to school and I had to fight for accommodations to be made for him.

But you see now the world can understand my son due to his ‘label’ of being Autistic, he is so much happier as a result. It opened doors that allowed us to get the right support for him. Thanks to his diagnosis now other people can now see how much he has to offer the world too. And that is why a diagnosis is so important for children like my son. Because otherwise he would have continued being misunderstood and labelled in all the wrong ways.

So the bottom line is that the long wait not only affected my son, but it affected me deeply, and there is no easy answer I’m afraid to say, it sucks! The waiting lists in the UK are appallingly long and I wish I could tell you otherwise but I can’t.
light-tunnelBut mums what I can tell you is this – please believe me when I say that there is light at the end of the tunnel. I learned that I had to believe in myself, and you will learn that too I promise! You are a good mum and your gut instincts are always right, just like we instinctively know what to do with our babies, nothing has changed just because they have grown up a bit. And please know that your opinions as a mum are 100% valid and worthy of being heard, no matter what labels your child has been given or how long you are waiting for answers.

And if there are any professionals reading this, please try and see beyond the labels, both my child’s and mine as a mum.

That mum may be labelled as a pushy parent, or come across as defensive in meetings. But it’s probably because inside she’s feel intimidated by you all sat at the table like you’re ready to interview her. She may have had years fighting a system that struggles to view things from her child’s point of view. She may have sat at meeting after meeting having to listen to all the things her child can’t do when she knows how much he is capable of if they could only see it. Maybe she’s worn down by judgements and feeling like her opinion isn’t valid. And maybe all she actually needs is for someone to say to her that they don’t have a magic wand to make it all better, but that they hold value in what she has to say and that they are really listening to her.

Because after all she is just a mother. A mother doing her best. A mother who held her baby in her arms all those years ago with such hope and dreams for the future. And no matter what labels her child is given she loves him all the more, more than life itself.

Read more from Mrs M. at her brilliant blogspot here and vibrant Facebook page here.

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Articles

Talking and Learning: Book Review

I’ve followed Michael Jones’s blogs ‘Talk4Meaning’ for a number of years, for three very simple reasons:

  1. They always have sound advice, based on Michael’s vast knowledge
  2. They make me stop and think about the ‘obvious’
  3. They are fun, filled with music videos, reminiscences and stories.

So, when Michael mentioned to me that he had a book coming out, Talking and Learning with Young Children, I immediately pre-ordered it.

When the book arrived, it was even better than I’d hoped, with Michael’s enjoyment of language evident on every page.

From the very start, Talking and Learning with Young Children has a positive message: ‘It is fun to talk, for the sake of talking’ and has a focus on joint learning between adults and children, rather than adults hijacking the conversation.

As you would expect from such an experienced observer of children and raconteur, there are plenty of beautifully written examples of children’s interactions, in fact there are examples and case studies on almost every page. In addition, there is a very useful glossary at the end of the book.

The book starts with some of the most important theories, but doesn’t get bogged down with these. Michael starts his analysis of communication with those fascinating interactions between adults and babies, which start to form the basis of verbal communication. The chapters then move through first words, talking with two-year-olds and consideration of the home learning environment.

Chapters six and seven investigate the early years setting. First of all ‘quality talk’ is explored, with some excellent examples of Sustained Shared Thinking, and a range of different scenarios that practitioners will find themselves in.

In chapter seven, the perennial problem of having valuable and meaningful conversations with small groups of children is examined. This is the most realistic situation for most nursery settings and Michael has included some very practical ways that adults can extend and share conversations, even when there is a large group of children.

Taking a step back to look at the bigger picture, chapter eight looks at the pedagogy in a setting and how this can be organised to influence practice in a positive way, with some very thought provoking sections (see ‘Saying what you mean’ on page 157).

The final chapter considers ‘Communicating complex ideas’ and explores how practitioners can support children’s thinking using quality language. This chapter starts with a fantastic example of a four-and-a-half year old grappling with the question of ‘Is Elvis real?’ (page 172). The young child’s logic is impeccable and it is a brilliant illustration of how language exposes children’s thinking processes.

I think this is a book you could read just for the sheer joy of it – you don’t need to be doing a course or studying language development. It would certainly be a very valuable addition to the staff room or network group and for starting reflective conversations in staff meetings.

However, I will leave the last words to Michael – Enjoyable conversation is the place where children develop as talkers.

You can get the book from all good booksellers and your Amazon link is here.

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Guest post

Dear Mums in the Playground…

umbrella girl
This is the next in the series of blog posts from Mrs M, about her life as a mum of a son with autism. She has been sharing some of the roller coaster of emotions that happen behind the closed doors of family life.

This month Mrs M shares her feelings about her playground experiences. I think you will find them thought-provoking and moving, whatever sort of mum you are. Here is her story:

You may not know me well but I was that mum that skulked past you all with my head hiding under my umbrella, or under my hood just to avoid having to talk to you for many years.

I was that mum that the class teacher always wanted to come and talk to at the end of the day, with a knowing look that something had happened that she needed to tell me about.

I was that mum whose child who stopped getting invited to parties.

I was that mum that never came to the PTA meetings or mums nights out, who wasn’t part of any mums ‘group’.

I was that mum who was often running late in the mornings, looking hassled and exhausted at drop off time so never had the time to say hello to you.

I was that mum who ‘let’ her child hit her whilst trying to get him in through the school door in the mornings kicking and screaming.

I was that mum who you would whisper about to each other that should discipline her child better.

That’s me. I was that mum.

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Articles

Food for thought at the Story Café

It was my great pleasure to attend the Cheshire East Early Years Teacher Network meeting this week. We were welcomed into the New Life Nursery in Congleton to find out all about their Story Café.

Now, I’ve read about story cafés. They are an excellent parent partnership idea, where parents can come along with their children to share a story, in a relaxed, café style environment. Practitioners can support parent’s story telling, give ideas for sharing books at home and share knowledge about language development. Parents can get an insight into nursery life and spend time with their children, other parents and practitioners in an informal way.

There are a mountain of obvious benefits for parents, practitioners, children and the relationships between all of them. However, I had always thought that it sounded difficult to organise and resource, so I was really looking forward to finding out how it was achieved so successfully in Congleton.

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Articles

Even More Sources of Free Information for Early Years Practitioners

BooksKeeping up to date with changes in legislation, practice and pedagogy can be a real headache, especially when there is so much information on the internet. I find that subscribing to some key sites (for free) helps to keep me in the know and ensures my practice is current.

Here I’ve listed some of my ‘go-to’ sites, which make getting information much easier and faster. Some of them you can decide how often you’d like emails, so you may only want them once a month or you can choose more often:

  1. CASPAR NSPCC updates This is an ‘awareness service for practice, policy and research’ with weekly emails. These are particularly good for the latest safeguarding and child protection news, from all parts of the UK. It also includes news for older children, children in care and social services updates
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Men In Childcare Podcast

Men in Childcare – Interview with Paul Clarke

woodhouse-nursery-logoPaul Clarke is both an experienced nursery practitioner and babysitter. In this podcast, he explains his particular interest in promoting sport with the young children in his care, especially football. It is something he is keen to expand on in his local area which is useful as the setting he works at, Woodhouse Day Nursery in Loughborough, is in the countryside with a large garden.

Paul also discusses his different learning experiences and gives some tried and tested advice for other men in childcare.

Please do contact Paul via the nursery if you are interested in developing football or other sports with young children in your care.

Find out more about Woodhouse Day Nursery here

And you can contact Paul for babysitting on his email: [email protected]

Enjoy!

subscribe-to-mic

If you enjoy the podcast, please leave a review on iTunes too – it helps to promote the podcast and get it to reach a wider audience.

 

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Viewpoint

Why PSED is fundamental to children’s learning and development

Personal, Social and Emotional Development (PSED) is fundamental for young children’s learning and development. It is for this reason that the 2016 EYP/T Development Day has the focus of ‘Healthy Child, Happy Child’.

However, it would appear that this message is not clear to everyone. I was recently talking to a friend about her child’s experiences at school. It was not a happy story, and included a number of jaw-dropping mistakes by the senior management.

The one that really struck a note was the serious and genuine belief by the school head that their role was ‘education’ and that the mental health of the children in their care was not part of their remit.

I think the whole coffee shop heard my “WHAT??!!”

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Articles

The Power of Schematic Play

Schematic play is fascinating to watch and can be a very informative way of analysing children’s thinking.

I have written previously about the mixed feelings some practitioners have about schemas – find the blog post here – but schematic play is now identified in the EYFS and can be a powerful learning process for young children. For this reason, I’m going to focus on one very typical type of schematic play – Transporting.

Let’s start a the beginning though. Athey (2007) defines schema as ‘patterns of behaviour and thinking in children that exist underneath the surface feature of various contents, contexts and specific experience’ (page 5).

So when you are looking out for a particular schema, you must observe children’s behaviour and see if that behaviour is repeated in many different areas of play, such as drawings, physical activities, 3D modelling, role play and sand play.

Using the Transporting schema as an example, do you see the children:

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Guest post

How we can help alleviate the build up of stress at school

I am very proud and pleased to present the third in the series of guest blog posts, written by Mrs M, who writes ‘A Slice of Autism’. I am publishing these once a month.

This month Mrs M gives us some very practical ideas for how to support children with autism in the classroom. These do not need massive changes in routine or environment, but simply viewing the school from a child’s perspective. Here is her third blog:

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.stressed-boy

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

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Articles

How To Develop Children’s “Extra Senses”

How many senses do we have?

Five, right? – touch, taste, sight, hearing and smell.

However, if you talk to an occupational therapist, you’ll find at least an extra two – vestibular and proprioception – which are vital that you know about.

The vestibular sense is so named because it is sensed in the ‘vestibulum’ system in the inner ear in the semi-circular canals. These are responsible for balance, and it describes both the sense of balance and spatial orientation. The vestibular system detects movement and changes in the position of the head, for example, when your head is upright or tilted (even with your eyes closed).

Proprioception is defined as the perception of stimuli relating to position, posture, equilibrium, or internal condition. Basically this means knowing where your body is in relation to the external environment, for example, being able to sit in a chair without turning round to look, or walk up stairs.

Proprioception is a dynamic sense, allowing us to continuously adapt to a changing environment and is learned through all our other senses and neuro-developmental exercises, usually whilst we are children.

It is vital to know about these, because without good vestibular and proprioception senses, children would not be able to walk, hop, skip, navigate around a room, catch a ball and definitely not be able to manage stairs.

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