21 May 2018

Are We Running Before We Can Walk When Teaching Social Skills



This blog post has been playing around in my head for a long time now. I wanted to get it out to you way before this, but i needed to get this right. There are so many of us in the situation where our child’s speech and language skills are assessed and deemed appropriate for their age minus a few issues. Some of your children much like Lola can speak clearly, have a wide vocabulary and therefore only basic - or none in some circumstances - of speech and language therapy is provided. For Lola i always knew there was more to understand, yet without a competent professional who completely understood Lola and was able to think outside the box, using non-traditional methods of assessment we were stuck. Her profile was spiky, she had difficulties in some areas and was average in others. Her demand avoidance played a part in this also. Lola was diagnosed with Atypical Autism in 2014. In 2017 she was assessed by Dr Judy Eaton and subsequently diagnosed Autistic with a demand avoidant profile. (Pathological Demand Avoidance)

Lola had limited speech when she was two and half, making a few sounds, but her speech was mainly growling, screaming and grunting. She quickly caught up though, almost overnight she went from growling at people to singing Katy Perry’s ‘Roar’ - ironic right? - without the tiniest hint of difficulty.  




It seemed that professionals thought as soon as she could speak it meant she understood too and so we found ourselves in a position where she was given basic Speech and Language Therapy delivered by a teaching Assistant. Is it any wonder that her skills in this area haven’t progressed over the last few years?  

I truly believed that we were missing something from the bigger picture and that it was down to her understanding, but i had no idea what it was or how we could help her. That all changed last month when i attended the PDA Conference organised by The PDA Society who I will be eternally grateful to for continuing to raise awareness and acceptance and understanding of PDA. 

There were a few workshops that the delegates could choose from and I chose the SALT workshop by Libby Hill - Speech and Language Therapist and all round legend of a woman who completely smashed her presentation like a boss, with humour in abundance and the ability to keep the attention of god knows how many people for a whole hour, hanging onto her every word and enthralled by the new information that was being presented before them. She’s the type of woman you want to immediately make your best friend. (I think I just about managed to not actually ask her out loud) Although I did stalk her a bit on social media afterwards and was delighted when she accepted my friend request.

Anyway, her presentation wasn’t what you’d expect. It didn’t tell us how to teach our children and young people to socialise appropriately. Remember when you had that “light bulb moment” when reading the text on Pathological Demand Avoidance? You know, the one where you quite literally thought they were describing your child? Well I had my second one during Libby’s talk which made me so excited. Finally I had been given the last tool that I needed in my toolkit and everything finally made sense to me.

“Social thinking is a user-friendly term for social cognition. Social thinking is required prior to the development of social skills”

Michelle Garcia-Winner


Social thinking is crucial to the development of Social skills and therefore we have been teaching our children step two before they’ve had the opportunity to learn Step One, much like the phrase “running before you can walk”

Social Thinking or Social Cognition is having the ability to consider your own thoughts, emotions and intentions as well as those of others so that you have the ability to interpret that information in your mind - which could then be transferred to Step Two and your social skills. Your interactions with people can be developed once you have the ability to predict another persons intentions.

Its quite a mouthful isn’t it? Libby used a fantastic explanation with some useful visuals and a description of some people in a train station with natural social cognitive abilities and others who were impaired in that area and the ways in which they responded to different situations.

Libby said...

“when walking through a train station and you see someone coming towards you with a buggy, you’ll automatically glide to the left to allow the person with more difficult manoeuvring skills to pass you by, and then along comes an elderly person using a walking stick and you automatically glide to the right to allow the elderly person to walk on by”





It is a response from your brain that sends the correct messages to your body that gives you social cognition. 

However if a person has difficulty in the areas listed below then they are likely to experience SOCIAL COGNITIVE CHALLENGES

Executive Functioning
Cognitive Flexibility
Language Skills
Emotion Regulation
Social Skills
Sensory/Motor Difficulties

Before we start to implement strategies for Social Interaction we need to work on these difficulties. So if it seems like your child has not made nay progress during their periods of Speech and Language Therapy then it may be worth you exploring these ideas first because if you’re anything like me, this is most definitely the key that we have been looking for to unlock Lola’s potential for improving her Social skills. 

Libby then went on to describe a techniques used to enhance these skills that was completely new to me. It wasn’t a technique i was familiar with at all and yet it made so much sense. 

THE I-LAUGH MODEL - MICHELLE GARCIA WINNER.

I  = INITIATION OF COMMUNICATION

L = LISTENING WITH EYES AND BRAIN 
A = ABSTRACT AND INFERENTIAL LANGUAGE
U = UNDERSTANDING PERSPECTIVE
G = GESTALT PROCESSING: THE BIG PICTURE
H = HUMOR AND HUMAN RELATEDNESS


I IS FOR = INITIATING 

The initiation of communication is the ability to use language skills to get your message across. It is a difficulty to start or (initiate) something that is not routine. Being able to ask for help, or seeking clarification on something and executing a new task. The individual with Social Thinking difficulties can have very little difficulties when speaking to someone about his or her own topics of interests however, when asking for help, or asking for clarification on something they are confused about can be extremely challenging because their initiation of communication is impaired. These two skills (asking for help and understanding how to join a group for functional or personal reasons) when combined together can enhance a persons ability to succeed in the workplace, in education and in relationships. Being able to initiate communication is paramount to ones future success. Asking for help is a really difficult thing for children to do and when you add on this difficulty in social thinking it opens them up to more vulnerability with their peers, their own self esteem and their teachers.

L IS FOR = LISTENING WITH EYES AND BRAIN 

Did you know that listening is more than just receiving auditory information. Using your eyes to listen means that your brain is receiving visual stimuli and messages and interpreting them into messages that can be heard, or as Libby Hill more accurately describes - “Listening is not all about processing but also about how we synchronise non-verbal communication skills to process and respond more succinctly to a message.

So imagine you are speaking to someone and that person looks away seemingly distracted by something that they’ve seen and then looks back at you with disgust on their face, or amusement. Individuals without difficulties in Social Thinking are able to successfully interpret those non - verbal cues into a message that the the other person is relaying. A person without those difficulties will follow the other persons gaze, see the thing that is causing amusement or disgust and then react appropriately to the information that they’ve listened to with their eyes and brain.


A IS FOR = ABSTRACT & INFERENTIAL LANGUAGE / COMMUNICATION 

There are lots of different types of abstract and inferential Language and communication that even i struggle sometimes when I can’t quite make sense of tone of voice and body language together with what someone is saying. When there is an impairment in understanding different types of communication then messages can get lost and/or misinterpreted causing confusion and frustration for the individual that needs to work really hard with these different types of language and communication. 

Types of communication and Language that can cause these difficulties are:

Metaphor
Sarcasm
Inference
Idiom
’Slang’

So just going back slightly to the individual that struggles to initiate conversation or ask for help with meanings, and has difficulty listening with their eyes and brain, these types of language and communication are going to be extremely difficult for people to understand which can then be exacerbated by the difficulty to start a conversation explaining that they don’t understand = (INITIATION) Children with social and communication difficulties are often confused by ‘sarcasm’ and many Autistic adults are often describing their frustration of sarcasm and left wondering ‘what is the point’ ‘why don’t people just say what they mean?’ 

Are we being purposefully difficult by using idioms or sarcasm? Why do we seem to make communication so difficult that other people need to constantly interpret meanings by use of listening with eyes and brain to work out the actual message that is being sent. 

“It’s raining cats and dogs” is a relatively over used term for ‘Lots of rain’ 

Why don’t we just say what we mean? - “Its raining quite a lot today isn’t it?”

Being able to understand this is incredibly complicated, yet many of us can understand the underlying meaning of abstract language but those with social thinking challenges battle daily with our complicated use of language. If you think about it, it is everywhere, and many are left wondering ‘What does it actually mean’ The slang today is different from yesterday. When i was growing up we used the ‘BAD” For awesome or (Good) and then 10 years later slang changed from ‘Bad’ to ‘Phat” I must admit i didn’t get this one! However another ten years later, i have a son who uses the word ’Sick’ How does one even try and understand the meaning of slang when it changes so randomly and frequently. I can completely understand why people would be confused. And it isn’t just in the spoken word that we use slang either, its prevalence on advertisements is astounding, which then creates the frustration of not understanding the meaning of adverts or wether something is a good deal or not. 


The six steps to the I - LAUGH Model is quite complicated in itself to understand, The brain - for many people who do not have impairments will naturally jump from step 1 to step 6 very quickly. However not everyone is born with that natural ability and will need to be taught those skills in order to develop a good understanding of social skills and how to practice those for their future.

U IS FOR = UNDERSTANDING PERSPECTIVE 

Understanding Perspective isn’t just one thing, its considering your own and others thoughts, Emotions, and personalities amongst other things which helps create the definition of perspective taking. Considering things like other peoples thoughts, emotions using prior knowledge and experiences and language based and physically coded intentions with regards to the specific situation. Confused? its a bit of a mouthful but simply put, To be able to UNDERSTAND someone else’s PERSPECTIVE you need to consider the thoughts, emotions and intentions of that person while also considering the specific situation simultaneously.

Which leads us to:

G IS FOR = GESTALT (GETTING THE BIGGER PICTURE)

Now i struggle with this one, conveying this in my own words, remembering the talk and explaining this in a way that can help others understand is difficult, but overall this basically means putting everything together, gathering all those tiny pieces of information and collating them so that they mean something, so that you can respond, understand, take it all in, it helps you stay on track in conversations and intuitively understand the underlying concept. When reading something you need to be able to follow the concept instead of just gathering those tiny bits of information and collating them together. Conceptual processing and organisational skills often go hand in hand and weakness in one area is normally accompanied by a weakness in another area. You may find that people with those difficulties are more likely to struggle with completing homework projects where they need to relate one piece of written work with another piece of art work or numeracy.and it can greatly impact on the persons ability to formulate written expressions. I always described Stanley as so intelligent in mind, he was so clever and advanced but when he started school those skills didn’t come through, he was described as :behind” and he needed A LOT of help. He couldn’t get it out of his head and onto paper, and thats where his difficulties lay.

H IS FOR = HUMOR AND HUMOUR RELATEDNESS

Humour for these beautiful minded people can be tricky, they can have a great sense of humour but will often miss the cues that enable them to participate successfully with others in social situations. Often some can have inappropriate sense of humour, timings, anxiety and being unable to judge another response can all impact on ones ability to convey their humour effectively.




To compile this blog post Libby Hill from Small Talk kindly shared her slides that she'd prepared for the talk so that I could write this.

Some books recommended by Libby Hill include - 

Superflex and His Team Of Unthinkables
Inside Out: What Makes a Person with Social Cognitive Deficits Tick

These can all be found here Social Thinking.



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15 March 2018

Why You Shouldn't Wait To Change Your Autistic Child's School





Three years ago I was told that Stanley would never cope in a mainstream environment when he transitions to a secondary placement. The day I heard those words actually broke my heart a little. Lola hadn't even been given a specialist placement at this time and already I was being told that another of my children would need specialist education. 
 
I had queried Stanley's progress for about a year and a half, and we were told he was fine. He wasn't behind and he was managing well. He didn't display any autistic features and had no attention problems. Stanley's mental health told me this was not the entire truth and after the school went through some issues with staffing and other Consultant Heads came through the school for short periods things started to change, and the reality was that actually he was THREE years below age related expectations and his results were actually changed to reflect that ONLY upon my request. He was also depressed and he was being bullied and had been asking me for two years to find him a new school. 
 
I wish I'd have listened to him properly. I wish I would have delved deeper into his problems and paid more attention. 

I will feel guilty for a long time for not listening to my own child. I should have been there for him and I wasn't. At the same time, Lola was my priority, and fighting the educational system for extra provision and schools for reasonable adjustments was becoming a full time job and I could not manage both things at the same time with a small baby. Lola was having intense, violent meltdowns at every school pick up and drop off and in hindsight I should have pulled her out too, however if I would have done that then we may not be where we are now. 

Finally the day came when me and Stanley had both had enough, I cant quite remember what the breaking point was but I know that we had a week of complete upset and Stanley had started school refusing, his mental well being was deteriorating right before my eyes and the lively, intelligent, bright, happy, funny little man that I once knew was becoming a shell of his former self.

Empty, emotional, uncaring.

He was not himself at all. 

On a Thursday evening I had phoned the Local Authority and had gotten him a place at another school for the following Monday start. He was so chuffed. I saw a little spark re-ignite and he genuinely smiled for about two days.

For an autistic child, change of routine and structure, new faces and classes, and missing friend can be an anxiety inducing time. It can lead to new challenges, and fights and meltdowns. 

Not for him! He smashed it like a boss! 
 
He turned up to his new classroom and to his new friends in his new uniform, new hair cut and got stuck right in. He was so happy.

But he was still a massive three years behind and I was so worried for him. Some may say a little over - anxious. I had to be, I had promised myself I would NEVER let him down again. As time went on I was concerned we were running out of time to get him secondary ready and in October 2017 I applied for an assessment of his needs - which was subsequently refused, he was making accelerated progress and they didn't see the need to assess. I was gutted. Obviously I appealed.

His school were and still are amazing. They have made reasonable adjustments, and put so many other little extra provisions in place for him that he has progressed mentally, emotionally, and educationally. I was still scared for him though, secondary school is massive, there are so many extra transitions, new people, new friends, and teachers and different classrooms and books for each lesson. How would he manage? he has executive functioning difficulties and he is extremely disorganised. 
 
As part of the mediation process the Local Authority agreed to an Educational Psychologist assessment. I have just received the report back and its fantastic. This little boy started Year 5 at the level of an emerging Year 3. His teachers have worked so hard with him that he has progressed to an Emerging Year 6 and in his Psychology Assessment where his chronological age is 10Y 7M he has a numer reasoning skill of 13Y 3M. How absolutley fantastic is that?
 
This is without a doubt down to his placement, down to his teachers for not giving up and taking on a student in desperate need of help. It is down to him for soldiering through whatever life threw at him and not giving up.   

So if you ever had a moment where you thought about changing your autistic child's school placement, then DO IT NOW.

If your child has ever asked you to change schools, then don't ignore those pleas like i had. Act upon them. Dig deeper. Find out what is wrong and make changes, because if you done, then trust me, you WILL regret it.

Stanley is finally secondary school ready and I have dropped the appeal against the LA. A weight has been lifted. I could not be more proud of my little boy than I am right now.




 
 
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26 February 2018

Chapter 6 - I was going out of my mind.

A Journey into the Unknown


Chapter 5 consisted of us being referred and discharged immediately from community peadiatricians and made to jump through hoops, consisting of parenting courses. My daughter was deems a child that was an extreme version of normal – who had tiny traits of autism, which would eventually go away. After I had received the report from this appointment  I was so disappointed I complained until we referred again for her hyper – mobility and to have a thorough assessment of it with an expert.



Before we get to the bit where Lola got to see someone for her hyper-mobility, we have 9 months to get through. This chapter is going to be about all three of my little beauties as it's actually a key year. 
My youngest was a very poorly baby who was always ill, I think in 3 months since she was born we had called out two ambulances for her, one because of her temperature and breathing where she was put on a nebuliser in the ambulance and another because she had tonsillitis so badly that she had a febrile convulsion because of the temperature rising so high. She was just like Lolly, her skin would be all motely and her hands, feet and mouth would be blue, even her tongue.




In fact she was worse than Lolly, but again I was used to this and so it didn't worry me too much, there would be no warning for any of her illnesses, one minute she would be fine and the next she was convulsing with a temp of 43c. I was so scared, and just like the time with Lola choking I couldn't cope with seeing my baby passed out, I was so upset and I knew I wasn't doing any good with her in my arms so I passed her to Kenny, who brought her round. While I spoke to the 999 operator and packed her hospital bag. It's weird isn't it because if it was any other child but my own I would have been calm as anything and dealt with it appropriately.























This was number 2 on my most scariest moments list After Lolly choking! I was distraught. Shaking, pale. She was only tiny! What was happening to my children why could their tiny bodies not cope with a cold, or any thing. My boy was a very healthy baby and had nothing more than a common cold. I didn't know any other family who was in and out of hospital with their children as much as me at that point. I felt like I lived there. Lolly was so upset, she didn't understand, she thought that I wasn't going to bring Connie back home and I just had to leave her knowing she was so confused and upset, but my baby needed me, I had to leave her. Tonsillitis was diagnosed and we were discharged. It wasn't long before we were back down there, she had bronchiolitis, and whooping cough. She was practically foaming at her mouth, it was very watery, her skin was pale, and dry and She was very, very poorly. Was given some strong antibiotics and sent home. She picked up immediately on these and was happy and healthy again. Not for long, though.



It was Christmas soon of 2012 and we had booked a lodge in wales to spend Christmas, much to the dismay of our family, but we needed a break, we needed to get away without the worry of anyone else or the big get togethers over the festive period. These were particularly hard for us as a family. Lola didn't understand at all about birthdays and other special occasions. If you said happy birthday to her she would repeat it back love her, and still does.
She gets particularly anxious, lots of unstructured days, lots of visitors, bringing presents and having dinner it confuses her. So we decided to go away, a nice lodge with a hot tub in Wales. One whole week of relaxation and hopefully some snow!
It took us 8 hours to get there, Lola was an absolute nightmare, she was screaming, setting the others off, Connie was only little and needed changing and feeding often. Lola hated the car seat, hated the music, hated everything. It was the worst journey in the world. In the end I had to pull over and swap her into Kenny's van. She was not a happy girl, not even the promise of the hot tub when we got there could persuade her to calm down. We were soon learning that journeys with Lola were practically impossible. We weren't prepared, we didn't know about distractions for her disabilities because at that time she was just an "extreme version of normal" we weren't given any strategies to help her or us, we just had to deal with it, get on with it, punish her, make consequences for her behaviour, do her a reward chart, And wait for a parenting course to help me be a good parent. Eventually we arrived and unpacked after my car had broke down in the middle of nowhere with a screaming hungry baby, and a screaming anxious toddler and It was amazing, kids jumped straight in the hot tub, and we chilled with a well needed glass of wine and prepared for Christmas.
Connie was poorly again and she had a cough and cold and high temperature. She also came up in a rash! It was blanching though so it wasn't a worry. She got over it quite quickly this time thank god!
It rained the whole time we were there, we literally had to stay in and make do. Christmas was quiet and peaceful and very relaxed.
Lola didn't understand climate change Or couldn't feel certain temperatures she would want to wear shorts in the winter if it was sunny and try and go out with big coats on in summer if it was cloudy, It was a bit of a worry because once she had her mind set on an outfit, she would be adamant she was wearing it, and I swear nothing could change her mind. We did though in them days, we made her change clothes but the repercussions weren't worth it, and our motto now is "if it isn't harming her what's the point" if we went on holidays in winter to the coast she would want to go swimming and could
Not understand she wasn't allowed in the sea. It was almost like she was saying why are you bringing me to the sea of it's too cold for me to swim in? Logical really for a child, but "normal" children would understand after it being explained. No amount of explaining it to her would help her understand and so we would just let her find out herself.





It took us 2 1/2 hours to get home, big difference from 8 hours on the way there. It was good to be back. But then the realisation of back to work and back to school hit. I was also due to go back to work and needed childcare, so we hired a nanny, she came and worked three days a week, taking the kids to school, and picking them up and looking after Connie Mai at home. She would do the general tidying up. Lola was very difficult for her. Our routine was hard because Lola done odd pre school days so it was quite hard for her to get used to. She never listened to the nanny and was just generally difficult. At this point, Stanley had started regressing - academically he got left behind. He was in year 1. He was fidgety, inattentive, and disruptive. He was the same at home. We said before they were like chalk and cheese, and it was getting worse. We put it down to me going to work. I hadn't worked at all since having him so maybe it was just too big a change. His teachers in his class were changing all the time, which didn't help, the whole way through year 1 he and the other children were passed from pillar to post. He didn't cope well. His writing and phonics took a dive, he couldn't read, would not do any work at home at all, and eventually I stopped fighting with him about it. I refused to spend my couple of hours in the evening with him getting stressed over reading and homework so we left it.

At home he was gaining independence and becoming disruptive and belligerent Stanley withdrew further from me, not only did I have to spend practically 90% of time with Lola but Connie was poorly, with all her infections, she also had severe silent reflux, she got to the point where she would see the bottle and cry! She was in agony every time she fed. I went to the doctors and got her some special milk the same as what Connie was on after trying all the other things they ask and it still didn't work, I worked out she was also lactose intolerant so I went back and got one that was lactose free. She started feeding again, and began to be a little happier, I had to eliminate all lactose and dairy from her diet. She had a constant rash around her mouth. 

So with all of this going on, I guess he had to fend a little for himself, he learned to make his own breakfast, get ready himself in the mornings and just sit there watching TV whilst I ran around like a headless chicken. I was still shouting, I didn't know what else to do. At this point it was a habit. I found it hard to lower my voice and be reasonable I was majorly stressed out. I had turned into that person who threatened to "call daddy" when the children were being naughty and I hate that! I always said I would never do that, what's that proving? It's just proving to them that you know they don't respect you or listen to what you say. He used to listen once but not no more. I felt like he hated me, I desperately wanted I bring him back to me but I didn't know where to start, How do I do this? Where the hell am I going to find the time to make a child love me? Well I tried, and I tried and I tried to be a good mummy, to listen to him, show him attention but I just didn't have any patience or time or motivation, I was in catch 22, again every time I went to bed I swore I would be a better parent the next day, then I would spend all night up with Lola screaming for what I thought and was told was nothing more than night terrors and when It was time to get up I was exhausted, and had to get her dressed, which took over half an hour, and the brush her teeth which took another half an hour, with lots of screaming and growling and lashing out. So again I had no time for Stan.




When Stanley wanted to play with Lola she just annoyed him and made him moan or hurt her, when she wanted to play with him he ignored her or wound her up. At this point they were both struggling for control. Not one of them wanted to give in, and Stanley was so stubborn to the point of even choosing to play on his own instead of with her. He would walk away find something to do on his own. It was a major problem. If he couldn't be in control then you couldn't play his games, it had to be his games, and no one else was allowed to make something up or have any ideas. I was going out of my mind, What was going on. I was once the envy of other people. My children were so well behaved, when Lola was a baby and Stanley a toddler they were great I could go anywhere. I had visitors all the time. Not any more they were constant hard work. Will it ever get better? I certainly hoped so.


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Why Would You Want To Label Your Child?



I don’t actually, and ill tell you why - I don’t like the term ‘label’ and how it is defined by the people who choose to ask this question.  Its like a dig, an insult, its like they’re implying I want these ‘labels’ for selfish or unorthodox reasons.



Autism is not a ‘label’ - My daughter didn’t get a diagnosis so I could make her wear a signboard of her difficulties.

Attention Deficit Hyperactivity Disorder is not a ‘label’ - my daughter didn’t get a diagnosis so that I could excuse her behaviors.

Anxiety is not a ‘label’ - My daughter didn’t get a diagnosis to encourage people to be soft.

I could go on forever right? Please insert any diagnosis and any theory you may have and then listen carefully. These disorders, disabilities, special needs, extra needs, or whichever other definition you wish to use aren’t labels, they aren’t excuses, and parents like me whose children have these diagnoses are sick of hearing people call them labels. Professionals do it, friends do it, acquaintances do it without any thought or feeling for how this statement comes across to the people it is aimed at.

It is hurtful, it is judgmental, and it is completely unjustified.

People may say, ‘why bother having her labeled when you are doing everything for her anyway’ or “why do you have to label her when the school are giving the extra support’ and ‘what’s the point in a label all it will do is hinder her in the future with prospective jobs or relationships’ It will NOT hinder job prospects, and it will not hinder future relations, My child is who she is and I am proud of that, she will be proud of who she is too, because i will make sure of it.

Having my child diagnosed (which I sought out and fought for might I add) wasn’t for the benefit of myself; it was for the benefit of my daughter and the future she rightly deserves.  Having a diagnosis enabled her to have access to other services she would not have received otherwise. Having a diagnosis enabled me to help others understand her appropriately and begin to use the correct strategies for her conditions. Having a diagnosis has enabled me to be signposted to the correct support groups, and training courses that I wouldn’t otherwise have been able to access. These ‘labels’ do not hinder my child’s future they benefit it. These ‘labels’ are needed for support and understanding. Not having a label will be used against you for obtaining further assessments and referrals. Even though a diagnosis is not legally needed for obtaining support and assessments, you WILL be told this because funding is critically low, and as a diagnosis is proving more and more difficult to obtain therein lies the problem of the merry-go-round service.

Ever heard a teacher say:

“Im sorry, your child is not diagnosed so we cant refer her for this assessment”

Or the Special Educational Needs Co-ordinator say:

“im sorry to be able to have an educational psychologist assess your child they need to have a diagnosis of X, Y, Z first”

Or a Headteacher say:

“I’m sorry we cannot make an application for your child for an Education, Health and Care Plan, because she doesn’t have a diagnosis”

This is NOT true!!!!!

But you see, who are we to question these professionals’ rules? On the start of my journey I was told all of these. All of them are NOT true. Nothing is based on a child’s diagnosis, but to access the support and assessments it seems we need them. Even though this isn’t what it states in the SEN code of practice, it seems that that ‘Label’ is actually necessary.

Please don’t assume that I am labeling my child for other reasons other than to benefit her future, Please don’t think that these diagnoses are pointless, they are crucial for being able to access the correct support, and referrals and other assessments needed to be able to better our current situation and lifetime opportunities.

Do you feel like this? Have you been in a similar position? Please share your experiences in the comments.


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Autism Awareness - #YourJourneyMyBlog - The Cloth That Keeps My Child From Breaking




The month of April is best known for the explosion of Easter Bunnies, obscene amounts of chocolate as gifts for children and a magnificent feast to celebrate the resurrection of Christ. To many people April is Easter, They plan, they organise, many months in advance sometimes, Children have the time of their lives, gorging on chocolate, receiving gifts from extended family members, but to me, April is Autism Awareness month.



So to celebrate this, I am going to dedicate my blog for a whole month to families who wish to share their Autism Journey with you. Some of these people have autism themselves, some are autistic parents to autistic children. We have teachers with autistic students and even Bloggers who want share their journey with me, which I am very grateful for.


When you break a bone doctors cover it in plaster to enable it to mend. When you cut yourself a plaster helps you heal. When you are in pain we swallow medicine to ease our hurt. 

But what can you give a child when their heart breaks?




My daughter is 8 but already she has known fear, anxiety, stress and hurt. Someone once told me it is like the world is just too much for her. In some ways they are right. Lights are too bright, noise hurts her, people scare her, demands stress her and even eating makes her incredibly anxious.

She needs time alone. 

She needs physical closeness to mum. She needs consistent routine and reassurance. She needs something in her hand to help her transition from one thing to another. She needs encouragement constantly as her self esteem and mental health plummet like a rock falling from a cliff.

She is fragile. She breaks easily.

Yet once thing has kept her from breaking for 8 years now. It is something that can never be replaced. It has kept her going in tough times and comforted her through tears. It is a steadfast in a word that keeps on changing. It is always there, faithful, beautiful and reassuring. 

It is as dear to her as the air she breathes.

A little cloth. A bit of cotton that has been sewn together many times, taken to so many places and lived life with my child every single day.

To everyone else it is just a rag. To my daughter this cloth is wonderful.

She will not eat unless 'clothie' is right beside her. She will not sleep without it. It is hugged and kissed as she leaves for school and held to her face the second she is home.

'Clothie' is as precious and as fragile as Naomi herself. 

Both of them could so easily break.

The cloth has been battered, torn, sicked on and left behind a few times, exactly the same way as my daughter has. Others treat her cloth with distain much as she herself has felt too. As a tender, small, anxious child with autism she knows what it feels like to look and feel different just like her unique cloth.

I never thought I would learn to love a torn piece of muslin cloth so much as I do. It is what keeps my child going and what keeps her smiling.

Her cloth is priceless for one reason:

It is the cloth that keeps my child from breaking.

Maybe I need a 'clothie' too?




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