Oh! Autism

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Therapy

So here goes, this blog is about the developmental therapy my son has been receiving, or ‘brushing’ as we call it. A family friend who was aware of our struggles with our son’s autism and his challenging behaviour asked if we had heard of ‘Retained Primitive Reflexes’? She gave us a brief explanation which sounded confusing, so I started researching it on the internet.

The friend said you need to look up and get in contact with
Bob Allen, a neuro-developmental therapist who works with children and adults with ‘retained primitive reflexes’ who are showing signs of developmental delay. So we looked up his website. https://www.accesspotential.net/. It really was a revelation and things clicked into place for us.

There are other therapists who offer this therapy and there is the INPP (The Institute for Neuro Physiological Psychology in Chester) they use an exercise programme, but Bob Allen uses skin stimulation/brushing which worked so well for us, as our son was so young he would not have followed instructions and done the exercises.

The friend also said watch this video trailer – ‘Attention Please’, made by a mum who’s child is on the spectrum and was treated by Bob Allen. Its only a trailer not the whole film so might not make total sense. https://atworkfilms.com/attention-please-1 . It was like hearing our own story, we could totally relate.

So here is our story and our journey.

At the time it was a shock to hear about retained primitive reflexes, literally never heard anything about it. Now it seems to make total sense and I can’t believe its not more widely know about. We went with our gut instincts and contacted Bob Allen at Access Potential to enquire about our child and whether it could help. He said it sounded like our child had the pysche (mental age) of an 18 month old, maybe even a 6 month old, based on the behaviours we described over the phone. Although that might have sounded depressing, I was actually so glad that somebody was genuinely getting my son and where he was at. He wasn’t labeling my son. Bob Allen was fully booked so we got an appointment with his colleague Sarah Baker. We had our first appointment 2nd November 2018, when our son was nearly 5 and a half years old. And the therapy and the results have been astounding.

Primitive Reflexes and Retained Reflexes

What are Primitive Reflexes? So as I understand, as babies we are all born with reflexes to help us survive. We should loose or drop these baby/primitive reflexes between 2 months and 2 years old approximately as they have done their job. However if we don’t drop these reflexes, if they are retained they can cause issues with development. If primitive reflexes remain the brain doesn’t seem to develop neurologically as it should, there is developmental delay. And these delays cause challenges, struggles and behaviours that often look like the traits that a lot of children with ASD and ADHD have. Dyslexia, Anxiety, Meltdowns, controlling behaviour, issues reading, poor balance, bed wetting, issues with food, the list goes….

As soon as I read and understood about retained primitive reflexes and the effect they can have neurologically, it made total sense to me about why my child was acting the way he was. He was struggling, stuck in a baby phase. My child had been what I describe as a high needs baby initially, but he had seemed to be developing ok up to about the age of 2 and half years old. He reached all his expected milestones, sat up, crawled, walked and could talk. But then its like he had got a bit stuck, he wasn’t progressing like other children his age, it was subtle at first, some things seemed a bit odd, a bit of struggle but I couldn’t put my finger on it.

When he started pre-school age 3, they raised concerns, I was in denial at first, I didn’t want to label my child. But the subtle signs became more pronounced and obvious as he got older and his behaviours became more challenging. In many ways he seemed so young and immature, we were encouraged by school to try and get a diagnosis for Autism. We started the referal process when he was age 4 and got an ASD diagnosis when he was nearly 6 years old. But mothers instinct,I felt there was more to it than that.

At four years old my son started school, in short he stood out as finding it very challenging, he showed no interest in engaging with his peers or the curriculum. He had issues with settling, communication, interaction, cognition, learning, social interaction, emotions and sensory challenges. In reception the school managed to give him some extra 1-1 support and because it was more play based, he got by. He didn’t display too much challenging behaviour or outbursts, although he only managed part time till lunchtime. But in Y1 things took a turn for the worse. Maybe we rushed him back to quickly after the summer break. But after 3 days he started hitting and kicking teachers and class mates daily and us at home. We reduced his timetable to an hour a day and slowly slowly built it back up over weeks and months. But he still dysregulated and showed physical outbursts everyday. It was very stressful for him and us, it was very draining. He was also hitting us at home and we felt we couldn’t take him out anywhere as it affected every minute of the day, transitions were terrible and he had lots of massive meltdowns. I cannot stress enough how much it took over our lives, it was so dramatic, it was like our beautiful calm happy boy had turned into a ballastic angry scared frustrated wild animal. We tried all sorts of techniques to try to help and calm him but we felt broken and lost and confused, stressed and isolated.

I’m not saying my son isn’t autistic, and to be clear the developmental therapy is not a cure for Autism. My child has various issues, challenges and struggles that the therapy aims to help alleviate. And the therapy has helped alleviate alot of the behaviours that my child was struggling with, the behaviours that went to giving a diagnosis of autism.

But below is a list of behaviours I noticed in my child, that were subtle to start with and then became more obvious.

Concerns/struggles we noticed

Speech & Communication….
Early talker – but didn’t develop into having conversations
Never asked why questions
Just saying repetitive statements and funny sounds/noises (Echolalia)
Seemed to be locked in his own world
Never seemed to notice or comment on the world around him
Not reading, writing or learning phonics
Not engaging…
at school at all
not playing with toys
not interested in messy play, crafts or puzzles
struggling with interaction and being social
unable to play with other children or make friends
not sitting still to eat food, messy eater, not using utensils
Didn’t give affection or say I love you
Couldn’t cope when he hurt himself – aggressive and physical
Difficulties expressing, releasing and understanding emotions
Controlling behaviour
Hungry alot
Bad sleeper
Transitions very difficult and challenging
Frequent meltdowns – angry and physical behaviour
Mouthing and licking objects constantly
Sensitive to noise and busy environments
Got tired alot, floppy
Delayed fine motor skills
Issues with gross motor skills – can’t ride a bike or swim

Starting Therapy

We started the therapy in November 2018, when he was age 5 and 1/4. And now we are in August 2019, our son has just turned 6, he’s had 9 months of therapy so far. We have an appointment every 6 weeks at their office in Windsor. Each appointment costs £110. Sarah tested his reflexes, it was tricky as he was so young and couldn’t really follow instructions. She tested him for the 3 earliest baby reflexes to start with as she didn’t want to overwhelm him, the rooting reflex, the sucking reflex, the moro reflex and said he was showing signs of retaining all 3 of them very strongly. This explains why he was such a dribbly baby for sooooo long and why he still put everything in his mouth all the time!

Brushing exercises

Sarah gave us a set of brushing exercises (skin stimulation exercises) we were told to do on our son morning and night. Brushing gently with a fine paintbrush. First of all down his spine, start at 10 brushes and over the 6 weeks try and build up to 40 brushes. So the brushing is quite a manageable task to do and fit into a daily routine. The brushing does have an affect on the child that we his parents can’t understand. We were told things might flare up and keep her informed if we were concerned. I suppose its like when you have a bad neck and go to the physio, it might get worse or aggravate it before it gets better.

Within the first 6 weeks we noticed a change in our son’s communication. I remember we’d been to a Christmas market, on the way home we went past another market and our son said, “is that the market we were just at?” I can’t tell you what a breakthrough moment that was. He had observed and noticed something and then communicated it to us. First of all he knew and understood we’d been at a market, and secondly he’d seen something similar and linked the two, and thirdly, he was able to communicate this to us. This really was groundbreaking, as normally we would have driven past with no comment. But this dramatic change was evidence the brushing was having an instant effect, it was glaringly obvious to us his parents. Over the following weeks there were many more demonstrations of improving communication. It was like the key to the communication door in our sons brain had been found and unlocked and there was no stopping him now.

I will go into more detail and list entries from my diary below. But below is a list of the overall improvements we have seen in the 9 months. Literally most issues have resolved themselves, the main ones still very noticeable and problematic are, controlling behaviour and social interaction/making friends.

Improvements after 9 months of Therapy

Communication improved
Having conversations
Commenting on the world around him
Asking questions
Asking lots and lots of WHY questions!!
Asking about death
Drawing a circle
Drawing a stick man
Playing with toys and experimenting, role playing, playing by himself up in his bedroom
Meltdowns greatly reduced
Transitions nearly 100% better
Reduction in hitting, kicking & biting
Not mouthing objects
Improved eating skills
Improved fine motor skills, getting dressed, spreading butter on bread, opening bottles
Starting to be able to express emotions
Cried tears for first time
Better able to control himself and his physical outbursts
Calming down quicker
Riding a bike (still early stages – but peddled for 20 seconds)
Learning to swim
Sat on carpet with class for 5 minutes for first time in 2 years
Starting to do phonics and learn his letters
Gone from school not being able to engage him at all, now he can do 20 minutes of phonics
Completed his first ever task in class, focusing for 5 minutes

If you want to read more about the developments we have seen that I recorded in my journal in more detail please click on the next Therapy Post here

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My First Blog Post

Oh! Autism

My Morning Pages…

This is the first post on my new blog. Firstly a very brief introduction. I’m a mum of a six year old boy, we live in Bristol, UK. I’ve written a journal for a number of years, or another way to describe it is writing ‘my morning pages’. Back in 2005 I was inspired by a book I read called ‘The Artists Way’. It explains how anyone, creatives, artists, poets can get blocked or stuck, and ideas stop flowing. e.g. writers block. The first idea in the book is that before you can start getting creative again or get the stuff done you want to do, you must clear your mind of anything that’s bothering you. To free or declutter your mind and get the creative juices flowing again, start by writing your morning pages… write 3 pages of anything that’s on your mind. 3 pages might seem like a lot, but just start writing… anything and see where it leads.

And so I did, I started writing my morning pages and I found it very cathartic and therapeutic, and surprisingly easy to write 3 pages. I scribbled quickly and illegibly and got stuff off my chest and down on paper, ramblings, nothing interesting, not big stuff. I never intended for it to be read by anyone, and I rarely read it back. I kept this going for a few years. Sometimes I wrote pages and pages, other times just a paragraph and after a few years my morning pages became weekly pages, when I would just write as and when something was bothering me and then it fizzled out. It had done its job.

And then I had my little boy, in 2012. I initially started to keep a breastfeeding diary, but very quickly it turned back into my morning pages again, like a journal and I just kept it going. It has also proved a useful way to keep a track on my son’s neuro-developmental therapy, and now I want to publish my findings, our journey. So this is the start of my first ever blog.

It turns out I have a retained reflex !!

If you have read my ‘Therapy’ blog about the ‘brushing’ developmental therapy we took our son for, you will know that it is a developmental therapy that aims to release any primitive (baby) reflexes that a person has retained, that can hold them back from developing properly. When I first visited the Access Potential website and read about the ‘Moro’ reflex, I had a light bulb moment, I recognised so much of myself and my insecurities under the description and the list of symptoms associated with the Moro reflex. I thought oh my god, can this explain why I feel the way I do. The text below is copied from the Access Potential website.

The Moro reflex

‘The Moro reflex is the first of the primitive reflexes to emerge and the first to inhibit after birth. It usually emerges around 9–12 weeks after conception and is normally fully developed at birth. It should switch off around 2- 4 months of age.

The Moro reflex is the baby’s “alarm reflex”. As a newborn baby is incapable of rational thought, it cannot assess whether a threat is real or not. It is therefore protected by the Moro reflex, which is an unconscious, automatic response to a perceived threat. Like the other primitive reflexes, the Moro reflex emanates from the (unconscious) brainstem, the first part of the brain to develop and function.

On startle, the baby will rapidly throw its arms upwards and away from its body with its hands open. This is accompanied by a sharp intake of breath. It is followed by a relaxing of the posture on the out-breath with the baby bringing its arms in across the chest and clenching its fists and may be followed by a cry. These automatic movements are an important survival technique and are a signal to the outside world that the baby is in difficulty and needs parental attention.

When the Moro reflex is triggered , the baby’s ‘fight or flight’ response is activated, releasing adrenaline and cortisol ( the ‘stress hormones’) into its bloodstream .This results in an increase in the baby’s rate of breathing and heart rate, as well as a rise in blood pressure and reddening of the skin.

The Moro is multisensory and can be triggered by any or all of the senses, including an unexpected or loud noise, an unexpected change in light levels, an unexpected or intense touch, pain, a sudden change in temperature and a sudden movement of the body or in the visual field.

If the Moro reflex remains active beyond 6 months, it becomes an automatic, involuntary (over)reaction, which is strong enough to override the higher, decision-making, centres of the brain.

Once the Moro is triggered and our ‘fight or flight’ response is activated, we tend to perceive everything in our environment as a potential threat to our survival. Our fear is exaggerated; we see everyone and everything as a possible enemy. Our system will be in a constant state of over-stimulation, making it even more sensitive to sound, touch, movement and visual information. We find ourselves in constant ‘flight or flight’ and the excess levels of stress hormones in our system can have far-reaching implications, not only impacting on our physical and emotional wellbeing but also affecting our behaviour’.

POSSIBLE SYMPTOMS OF A RETAINED MORO REFLEX INCLUDE

BEHAVIOURAL AND EMOTIONAL symptons
(The ones in bold are the ones I related to)

Anxiety and fearfulness
Panic attacks
Low self-esteem and lack of confidence
Dislike of change or surprise
Shy and withdrawn behaviour
Fear of separation from loved ones
Difficulty accepting and giving affection
Mood swings
Depressive feelings and behaviours
Defiant behaviours
OCD type behaviours
Impulsivity
Emotional immaturity
Aggressive outbursts, both verbal and physical
Frequent meltdowns
Hyperactivity
Oversensitivity to sensory stimuli
Avoidance of certain places and situations
Excessive daydreaming and fantasising
Inability to relax
Distractibility
Fussy eating
Controlling behaviour

Overall I would describe myself as a confident, happy, positive person, especially to the outside world. Growing up I was a tom boy and physically brave, I don’t have any fears or phobias, I did well academically at school, but as an adult, emotional cracks started to appear….

Low self-esteem and lack of confidence

The biggest one for me is Low self esteem. But it is also wrapped up with or masked by Mood Swings, Emotional immaturity and Aggressive outbursts. I have had a fair bit of therapy due to depression I got in my late 20s and early 30s. At first I put my depression down to dealing with the grief I’d buried when my dad died when I was 11 years old. Having therapy helped me work through this grief, but I still felt emotionally unstable. Gradually I came to realise that actually maybe I had low self esteem/ low self worth. Which was puzzling as I’d always thought of myself as a confident, capable, bubbly, outgoing person. Maybe that was just my mask to the outside world.

My low self worth was very subtle but as I got older it seemed to increase. This nagging low self worth caused me much emotional suffering and affected my relationships, especially with those close to me. Outwardly I still held it together but personally often I could feel very jealous, oversensitive, needy, constantly looking for approval, and at times acted childishly, desperate, moody, angry, withdrawn. And when I acted like this, I then felt ashamed and embarrassed. This wasn’t who I wanted to be this indecisive, pathetic, childish, insecure, negative person. It especially effected my relationship with my mother, it was very antagonistic. Even though she was loving, caring and supportive, I felt she was critical. Its hard to know if she was or if I just read every situation from a position of low self worth. It felt like I was always trying to do good things, and be kind and helpful but I had this underlying guilt, that nothing I did was enough, I was not good enough, and that would lead to arguments and constant angry outbursts. I couldn’t express myself properly to her, I would just get angry = emotional immaturity. It was truly horrible. I knew I was going into an unhealthy child stance around her, but couldn’t help it or change. And this has been going on for years since I was about 25 years old.

Other silly examples of low self worth, would be even though I thought i was confident, I so worried what people thought of me, I became less assertive, as I felt being assertive = aggressive or unkind and I didn’t want to give people any reasons not to like me. Or maybe unconsciously I felt I didn’t deserve to have my needs and wants met because I had low self worth. Who knows, it was very confusing, just not feeling right, not feeling good enough and not being able to understand or explain why. Always questioning myself. This would then lead to frustration and angry outbursts as I felt unsupported and sidelined in many situations.

I am a confident driver but when driving on the motorway, if I saw drivers driving close behind me in the middle or fast lane, I felt I didn’t have the right to be there and I should instantly get out their way.

Emotional immaturity and Mood swings

These two seem to be quite intertwined, also in combination with low self esteem. I had often been called ‘moody’ as a child, and occasionally recall going into a mood and not knowing why. I can feel very hurt by situations. I am very sensitive or over sensitive. I hate the feeling of being left out, it feels so dramatically painful and upsetting, i will feel so hurt and let down, and either withdraw or get angry. It can affect me for days, and I over analyse situations. More recently I realised ‘oh I have social anxiety’, I worry about going out, and will rely on alcohol to relax me.

Fight or flight response

When I had my son, I would describe him as a high needs baby, he cried or screamed a lot. It is natural to have a connection to your baby so you respond to their needs. But his cries would go right through me and send me into an internal panic. Imperceptible to anyone else, and I didn’t really know that wasn’t normal, I didn’t really realise it was happening and therefore couldn’t express what I was going through. It felt very dramatic to me and made me very anxious inside. But now reading about the Moro reflex, the bodies fight or flight reflex, it makes total sense. Instead of calmly going, ok the baby is crying, I wonder what he needs, I would internally fly into a panic and stress hormones would be released and course around my body. Not nice.

Oversensitivity to sensory stimuli

I used to teach dance and I remember afterwards I would need to get home and just lie down in a quiet room and de-stress. I never thought much of it. But as I got older it became more noticeable. I describe it as white noise in my head. I now work in a nursery with 1-3 year olds, and often after a busy day I have that same sense of white noise in my brain. My husband gave me the word ‘frazzled’ and that exactly describes it. I’m not physically exhausted, I’m emotionally frazzled. And since learning about sensory overload associated with autism I can relate to it. Its a sensory overload i feel, one that I can control, it does not send me into a meltdown but it does not feel nice either it is a stress. I also realise I can feel it abit in social situations, if lots of people are talking at once. Maybe this is why I would be moody or retreat into my shell when I was younger, as I just needed some peace and quite.

Starting the brushing

I am 7 weeks into my first round of brushing. Almost straight away I noticed I had increased feelings of anxiousness, physically feeling it in my chest and I found my mind went into overdrive, not really switching off, thoughts constantly whirring around in my head, things I needed to do, to sort out, to control, but not being able to focus on one thing.

But now 7 weeks in I have now noticed a massive change in my reaction to situations and in my fight or flight response. Especially with my son at home and at my work, working in a children’s nursery. Previously something like spilt milk or arguments, or if a child fell over, these events would internally send me into a fight or flight panic. It would feel so urgent and dramatic. I never showed this externally but felt it internally. Now if it happens I just don’t feel that same panic inside. I just notice what has happened and calmly think ok that’s happened and then I just go and sort it out – calmly. Its amazing. Such a massive transformation for me. I don’t think words can really do justice to the change I feel. And it’s without me ‘trying’ its just happening subconciously, as the moro reflex is reducing.

I have also noticed a reduction to experiencing sensory overload. Again working at the nursery massively affected my over sensitivity to noise stimuli. A nursery can be a loud environment, especially when children argue or burst into tears, 1-3 year olds can be very dramatic in their responses, (like me previously). Now I can finish work after the same long full on day but not have that internal frazzled feeling in my head.

I am also noticing that my mind is not racing as much. I used to wake up in the morning and my mind would race, what do I need to do, mildly stressing and then I would have to discuss it with my husband, loading my stress onto him. Now I wake up and just lie there with a quiet mind.

I think I am still feeling impatient at times. I still have some social anxiety. When out having a family roast in a pub with my sister and her family, as soon as the food was finished I felt uncomfortable. I wanted to move and get out of there. A bit like ADHD. I was not able to fully relax. But now at least I recognised those feelings and I can explain and express how I am feeling calmly and articulate myself.

2nd Visit – 11th November 2019

Going to my 2nd visit by train from Bristol to Windsor. I don’t have fears and have traveled the world and am confident going places on my own, but as I got older I would start to have slight anxiety about getting trains on time and making connections etc. But this journey I clearly remember leaving my house and walking down the road and not feeling that very subtle underlying stress and anxiety. I remember thinking ‘oh wow this feels different’.

The main improvements are ….feeling calmer and less reactionary to situations. Calmer if my autistic son has a meltdown, or at bedtimes. Not worrying about transitions, knowing I can handle whatever may come, just being able to listen and be present when my son is freaking out, and not reacting, literally not being affected and this is not from me ‘trying’ not to, it is happening naturally.

Feeling calmer and more in the moment…. before if someone asked me a question I would feel the need to answer immediately, like the pressure was on. Now I can just hear the question and stay silent, have a think about it first and sometimes just not answer and it doesn’t matter.

Things I have become aware of that I want to change and have more control over….

FOOD…I feel I have a subtle issue with food, I’m not particularly over weight but I feel I have a lack of control over food. As soon as I see it, I want it immediately, it feels very urgent, I have no patience, I eat very quickly, and just keep eating, if food is left on my plate or other peoples plates, if i can see it I want it. So i have to cover it up or move it, out of sight out of mind. I want to have more control and have better intentions. I have noticed this is already improving a bit. At work the children have their tea at 4pm and normally I’d always be tempted to eat some even though I wasn’t hungry and then I would regret it and it would ruin me going home and having my dinner. The last few weeks I have managed to not have tea without much effort. I made an intention to not have it and that’s it.

SILENCES… I noticed in my 30s I had an issue with silences. I feel uncomfortable with silences and so will try and fill it, by making conversation or making jokes and witty comments. I like being light hearted and funny but I don’t like the uncomfortable feeling. So I want this to change, so at first I will notice the uncomfortable feeling and then eventually not feel this and just be ok with the silence.

SAYING NO and WHAT DO I WANT…I also want to get better at saying No, and knowing what I want. For instance when someone says do you want a tea, normally I don’t think and feel I should say yes, or if they say have a biscuit, go on, go on, feeling I should say yes to please them or if someone says shall we go here, just going along with people. I want to first think about the question, think what do I want actually and then stick to my conviction without feeling guilty if it feels like I’m disappointing the person.

Another thing I have noticed is I am feeling a bit more decisive. I went shopping and normally I’d um and ahhh about buying something and normally not be able to make a decision. A lot of it is to do with worrying about money, but maybe its deeper than that, maybe its feeling I don’t deserve it, or a confidence thing. I went shopping recently and bought a new expensive pair of boots and a coat I have probably wanted for 3 years!! Its a refreshing feeling, knowing what I want, what I need, what I am prepared to pay and not feeling intimated in shops if I don’t want something.

I also feel more confident driving on the motorway, not looking in my rear view mirror constantly and worrying about drivers behind me and what they want and being in their way.

Back to School

WHAT A TRANSFORMATION …. Returning to school in September 2019, for Year 2. Like all parents after a long summer break we were anxious how this would go. But based on last year, when our sons behaviour took a dramatic turn for the worse, we were even more anxious. So this time we were also more prepared. At the end of the summer term of Year 1 we sent emails and had meetings with the school about what would happen this year and our sons transition into Year 2.

Based on the fact that our son had not progressed at all in Year 1, we decided as his parents that it was pretty pointless him being in Year 2. He was so far academically behind his peers and he definitely wasn’t ready for SATS. It was agreed he could have access to both Year 2 and the Year 1 classroom, although he wasn’t officially repeating the year.

I also stressed to the school I did not want a repeat of last year and that he needed more support at the start of term in the mornings to get him settled. And the school have been AMAZING.

School arranged for him to come in on the Inset day before school started to see his new Year 2 classroom where he would have registration, and also to see his old Year 1 classroom where he could meet the new Year 1 teacher. This was very helpful, getting a re-introduction to school after the long summer break, when it was calm and quiet.

On the first day of school, he was very anxious and upset and clingy, but my husband managed to eventually get him dressed and get him to school.

Like last year our son enters the school via a separate, quieter entrance and went straight to his new Year 2 classroom. It was empty so he got the opportunity to go in and have a look around and have some time to settle whilst it was still quite. Then the teacher and class TA arrived and Patrick seemed ok and he told his dad he could go. WOW !

After Year 2 class registration, school arranged for a TA to take him down to his old Year 1 classroom and stay with him and settle him in. The first week we agreed he would do until 10.30am.

Apparently on his first day back, as soon as he entered his old Year 1 classroom, he sat on the carpet with the rest of his class and joined in with phonics. He even went up to the white board and joined in. OMG I cannot tell you what a breakthrough this is!! As for the last 2 years he has never sat on the carpet and joined in with his peers, phonics or class activities.

I pick him up on Fridays and the class TA bought him up to meet me at the office and he came bounding along happy and smiling. Showing me ‘Dave’ a flower pot man with concertina arms and legs, it was an activity he had joined in with. The class TA explained he is no longer sitting in the book corner, he is totally integrated with the rest of the class. He does carpet time phonics first thing and then joins in with other class activities. He can access the book corner and does occasionally just like the other children can if they like.

This is SO amazing. To be honest it is unbelievable and beyond our wildest dreams. He is a totally changed happy calm boy, who is joining in and integrating. It’s still early days and we will take things slowly. The plan for building up his hours will be…

Week 2 – 11am (he will have break with Y1 and Y2 class)
Week 3 – 11.45am (before lunch)
Week 4 – 1pm (after lunch)
Week 5 – 1pm
Week 6 – 1.30pm

After half term we would hope he will stay until break the first week and then stay for lunch and being doing half days in week 2 onwards.

It is amazing as last year in Y1 we were so stressed we were on the verge of deregistering him from school, thinking we would have to home school him, but someone suggested keep him there and to apply for an EHCP (Education Health and Care plan) for our son. Its a legally binding specifically written document for children with Special Educational Needs (SEN). Towards the end of his Y1 summer term 2019, the Local Authority agreed to assess him for an EHCP and a Speech and Language Therapist, Educational Pyschologist and a member of the Council Autism Team each visited him separately to assess him and his needs and write reports to give advice on the extra special provision he needs to help him fit in and cope and develop and progress at school.

We have just received the draft EHCP with all this provision suggested for him. It says that he needs highly skilled additional dedicated support from an adult with autism training and much much more suggestions. It’s still early days and we do not really know what level he is at and what he will still need extra help with, but he is integrating, he is engaging and he is learning. It is nothing short of a miracle.

I truly believe none of this would have happened or been possible without the therapy. He would have started Y2 still being at the level of a pre-schooler, still struggling with sensory issues, struggling socially and emotionially, struggling with communication, interaction, cognition and learning, struggling to control his impulses and struggling with his executive function skills. Now all these things struggles are or already have fallen away and he is coping and developing and catching up with his peers.

Therapy continued….

Below are the developments we have seen in my son that I recorded in my journal in more detail and in time order. All the points below that I recorded were new developments that my son struggled with and had never really done before.

Playing

A few days after starting therapy he said, “i’m going upstairs to make a card”. (he has never said anything like this before). He found some paper and some pens, did a scribble and said he’d made a card for a boy at school!!!

We played rolling a ball back and forth together for about 7 turns. He’s never showed any interest in playing anything like that before.

Questioning and being more inquisitive

Patrick heard the cat meow and normally he would just say, “What did she say?” (speech very repetitive and limited) but this time he also added, “is she hungry?”

He asked “What’s cereal? – Is muesli cereal?”

We went for a walk in the woods and saw some people walking with sticks, he said, “look those people have walking sticks – oh no they are just normal sticks they are using as walking sticks” !!!!

His Aunty popped over and he said, “I’ve got a friend called Ruby and I went to her house”. First time he has ever initiated a conversation with his Aunty.

He said, “I love Christmas and when its Christmas what colour is the sky”. I said I don’t know and he said “white” – first time he’s talked about Christmas and associating it with winter and snow. (he’s never really shown any understanding or excitement about Christmas before)

All of the above might not sound like that big a deal, but they were a major breakthrough for our son that really only ever said, “what’s your name?” over and over and over.

2nd Therapy visit – 14th December 2018

6 weeks later at his next therapy appointment Sarah tested him and said all 3 reflexes were still showing, they were slightly reduced. We were given a different set of brushing exercises, brushing down the front of his body from his chin down to his belly button.

Observations

At bedtime he said, H is for Huggie (his teddy) and C is for Christmas, F is for Frozen, F is for fire engine !!!!!!

Patrick has started hitting more since we changed his brushing and transitions have become an issue again. (This means that we had see these things reduce with the 1st brushing, but hadn’t recorded it or noticed it as I think the communication was such a big improvement)

He asked who is coming to his house, then got out his toy phone and called Ethan (a class mate who he is a bit obsessed with, but doesn’t know how to play with so hits him instead) He did role play, chatting to him on toy phone and asked him if he wanted to come to his house to play !!! (31/12/18)

He dragged a chair over to the cupboard and got the honey out. This is showing a more confident inquisitive side.

Having meltdowns again. Transitions seem better. Eating and cutlery skills seem a bit improved. Noticed he leans over his bowl to prevent spillage. Bedtimes long and drawn out, muttering a lot and seems unable to switch off. Better at getting dressed. Starting to be able to dress himself, still needs lots of prompting though. Jealous – doesn’t liked us talking to each other. Got himself dressed for school. (9/1/19)

3rd Visit – 1st February 2019

Brushing his face, from his ear down and along jaw to chin. Left and right sides. Start with 5 brushes and build up to 20 brushes.

He’s now counting up to 30. Transitions and getting dressed better. less agitated. Still jealous. Doing lots of echolalia and speech repetition. (13/2/19)

Couple of meltdowns in morning before school, but i could see he was almost able to cry and be upset, rather than getting angry and bite. I could see it was hard for him, he was struggling, like the emotions where there trying to get out but still a bit stuck.

Neighbour’s little girl (6 months younger) came over and P was very tolerant and friendly, they interacted very well, they had tea together. He was calm, he wasn’t competitive and jealous like he normally is. The play session did not end with him having a meltdown!!

Overheard him say to neighbour’s child, ‘come up stairs, come on, we’ve got to do a rescue.’ Later heard him count on his own and try to instigate a game of hide and seek with her. (This was amazing to hear him instigating play ideas, a real breakthrough in his social communication and interaction but it’s only happening with this one child, he can’t or doesn’t want to play with anyone else.)

He drew an eyes, mouth, nose and buttons on a ginger bread man picture. Drew a very basic stick man. Drew lots of circles on the blackboard (Amazing – he could only scribble before and was never interested in drawing. This is a real first!!!) (18/3/19)

ASKED his first WHY question!!! Put an arm around neighbour’s child in a friendly way, while asking, what’s the emergency? while scooting and playing Fireman Sam with her. (24/3/19) (WOW psychical affection to another child!!!)

4th Visit – 29th March 2019

Brushing palms of hands x 5 and brushing face x 5

He’s become very licky. Licking strangers sleeves and us. Taking longer to get to sleep. Extremely fidgety. Very unsettled. At school pulling trousers down, hitting and licking. Had to miss some brushing as affecting school too much. Starting to talk about emotions. Saying he’s confused and nervous. It’s like he’s learning about them but still doesn’t understand them fully yet. Still getting himself dressed himself with much prompting. (29/3/19)

Received his ASD diagnosis – Monday 1st April 2019

Sleep a bit better. Starting to give us instructions, asking us if we want to come and play and do this, and that etc… Went to park and school friend there and he didn’t hit them. Less licking. Starting to negotiate with us about school and taking a dress. Starting to talk and question days of the week. Still not sure about them yet though but questioning it is good. Better transitions, nearly 100% better, almost not an issue now. He nearly cried and had tears. Told us a story. (26/4/19)

A few days of meltdowns. He made a joke !! (7/5/19)

He had to go to Headteachers office for hitting in class. Had his toy dog with him and said the dog was called Ethan (name of class mate who he is little obsessed with). He said ‘the dog doesn’t have any friends and doesn’t want any’. Then said ‘I want to go back to the classroom and hit’. Headteacher said ‘I can’t let you, you need to calm down here first’. After a while he said ‘I don’t want to hit anymore now, I want to go back to classroom’. (Ahhh this is sad to hear but also very positive to hear the relationship and understanding of the Headteacher. Also positive development of him starting to communicate how he is feeling through the use of a teddy – will use this technique to try to talk to him about tricky things myself) (9/5/19)

Same day went to music therapy in afternoon, got upset and mad, went up to Simon the therapist and grabbed his arms, then got mad and shouted and stamped his feet loudly. (the previous week he’d been told if he hit Simon again he would have to leave) so this time he was trying other ways to show his discomfort and anger. Like he was trying to be angry but wasn’t sure how without hitting. (9/5/19)

5th Visit – 17th May 2019

Sarah the therapist said this sounded like a tough 6 weeks for P and for my husband (as he is the full time carer while I go to work). She said it sounds like he’s increasing his chronological age but still really like a toddler. Now brushing across his face in 3 lines, under the nose, across top lip, and across the chin x 5 am and pm.

Went to Adventure Playground SEN session. At the end I said something to another child and he went ballistic, had a massive meltdown, crying, kicking, trying to bite and hit. Hadn’t seen a meltdown like this in ages. I had to carry him out of there. Being in the car was good for him, decided to keep driving as a way to help him calm down, and try to process it and keep him secure. He was trying to get his emotions out, asking lots of questions, He kept saying over and over, “why did you do that, why did you say something, why did you pick the toy up, why, why” after about an hour I managed to distract him and asked, “are you feeling better, if you’ve calmed down, shall we go home and have a play?” Even though that was very stressful for both of us, that event was progress, him asking questions and trying to come to terms with it and release emotions rather than just hitting, kicking and biting. (21/5/19)

Bedtimes taking ages.
He instigated an interaction with neighbour and asked if she wanted to come to his garden to see his pond.
We found some bubbles in the park, unprompted he went up to another mum and asked politely, “oh excuse me – are these bubbles yours?”
Counting things out up to 10 while playing by himself.
Asked, whats a friend? is Cleo my friend?
Instigating more interactions with children and adults when out, asking reasonable questions and imparting information (its still like he’s got no stranger danger though, its quite endearing seeing him going up to random strangers and saying things like this is my teddy but he can’t come in here with me!)
Hitting greatly reduced (27/5/19)

Put a nappy on a teddy by himself – good fine motor skills. Correctly sounded out the word DOG when I read him a school book. Giving instructions to us and explaining why e.g. “I can’t do that because I don’t want to, I want to go upstairs.” (8/6/19)

Dysregulating, but also calming down quicker and showing better control. On a day out we were on a tree swing, he saw that i’d got his toy in my hand, and he started to dysregulate – get angry/upset/frustrated because I took his toy out of car. We had to put it back in the car, when we returned to tree swing, 2 girls were playing on it. He went up to them but was unsure, he went close, and punched his arms up and down by his sides, and moaned, but didn’t hit. He went away and came back a few times with us watching, then tried to push girl, she pushed him back. He did well to control himself and wait his turn. He went over to the girls mum who was swinging on another swing and hit her on the back hardheartedly instead. (16/6/19)

Controlling behaviour to us, not letting us talk to each other. Volunteered some information about school out of the blue.
Said “I LOVE YOU, YOU’RE NICE” without being prompted for the first time ever !!! (20/6/19)

Had a good meeting at school with class teacher and Senco. We agreed he was ready to start having social interventions with class mates. (Until now his behaviour had been to unpredictable and physical the whole year, hitting children and teachers daily when he dysregulated) (26/6/19)

Took him to class mates birthday party, normally he would be on his own in corner, or hitting, or have a meltdown and we would have to leave. This time he was in the mix, he didn’t talk to or interact with anyone. But he sat on the bottom of the slide of the bouncy castle and his class mates were saying in a friendly way, “move out the way” but he was sat there as I think he wanted the interaction and the physical connection but didn’t know how to instigate it. (28/6/19)

2nd to last day of school year. He sat on the carpet in class for the first time in 2 years. He completed a 5 minute task in class on his own for the first time ever in 2 years. He attended assembly for the first time in 2 years !!!!!

Last Therapy session – 6th visit – 19th July 2019

This visit was on the last day of the school year. Sarah told us we will have a break for 3 months now, to see how things settle down. He is very young and he has been put through alot with all the brushing and development. Sarah described having the brushing as like someone constantly flicking your ear – how annoying. He’s developed alot neurologically in the space of 9 months. We may not even need to come back. Often once the ball has been set in motion and he will keep developing and catching up. But we have booked an appointment for 3 months time and we can always cancel it.

Observations

Said ‘I love you’. Its like the affection key has been found and unlocked. He has been saying I love you a lot lately, said it 7 times in one day. He has also been very cuddly and affectionate. Climbing on my lap and cuddling and telling me he loves me. It’s amazing!!! (30/7/19)

Cycling

He has started to learn to pedal and ride a bike without stabilisers. We’ve been takihg him to a special learn to cycle track in Bristol and SEN sessions, and after only 4 times and he’s suddenly got it. With the help of the instructor he cycled unsupported for about 20 seconds!!! and he’s never had a balance bike as he just never showed any interest before. (Gross motor skills improving)

Swimming

Over the years we’ve taken him to swimming pools. He has always been cautious and hated getting his face wet. My husband has been taking him occasionally for the past 2 years and he firstly started to learn to kick while holding a float and recently he has managed to swim a few meters unaided without a float!!! And he’s loving it. Not scared anymore.

Phonics

Our son has been having 40 minutes 1-1 support at school each day. The LSA does phonics with him on an ipad, with the Hairy Letters app. At first he was disinterested and disengaged but after starting to have his brushing, this started to change. She would be able to get him to focus for a few minutes, then 5 minutes until by the end of the the school year, he could do 20 minutes. When reading him a bed time story I asked him to tell me what letter is that and he said it. Normally he would always say ‘ I don’t know’ and seem agitated and stressed. At first I thought it was fluke. Every now and then, I’d test him and it did seem he was starting to learn his letters. Once I then asked him what letters can you see and he read them all out individually from left to right. It was not a fluke, he was learning to read. By the end of the school year he has learnt all his letters, although he’s not reading yet. He still doesn’t really like the pressure of being asked to read. I noticed little things like he’d notice and comment on a letter when we were out and about.

Although I believe the LSA has done a brilliant job with our son, her patience and understanding of him and his needs and his personality, she has been able to judge how far to push him, they have built a good relationship. I do think she would not have been able to get him to engage in phonics if not for the brushing. Again another key had been found to unlock the cognition and learning door in his brain. As Bob said it wasn’t that he wouldn’t learn before he couldn’t. I’d seen this for myself before when I’d tried over a few years to see if I could interest him in doing painting, drawing, playdough, or puzzles. I knew he seemed bright but he just got stressed and anxious when I tried to get him to do anything. It was a struggle for him. Before the brushing it had been like trying to get a baby read, why should a baby be able and expected to do that. It was an unrealistic expectation for him, no wonder it made him stressed and anxious.

Socialising

The one thing that is still a struggle for our son is social communication and interaction and playing with and making friends. It seems he wants to now, but is not really sure how. He has one friend he can play with, the next door neighbour. But that relationship has been possible due to a year of carefully managed and often very fraught stressful play dates. But now they can happily play together without parental supervision for an hour or two. So at least we know it is possible.

We hope that in time the key to the social communication and interaction door in his brain will be found and unlocked and he will catch up naturally. It would be great if he could start to make friends at school.

In conclusion

We are ecstatic with the results. They are more positive than we could ever have dreamed. It has been tough on our boy and my husband particularly. But the positives far outweigh any negatives. I think the therapy has been such a dramatic success because we started when he was so young. I was never really concerned, what if it didn’t work or what if it goes wrong, as we were at our wits end. It’s not a ‘tested’ therapy, it’s not scientifically proven. Its not recommended by the NHS, i don’t know why, is it because they either don’t know or don’t care. But it is a natural therapy and Bob Allen has a lot of positive testimonials. We were prepared to take that risk, but honestly I didn’t think it could make my child any worse. He was already struggling massively and after reading so many Facebook posts about older children with ASD I knew things weren’t going to get any better, things would probably only get more challenging and severe.

To me it is as if in the space of 9 months of therapy our son has gone from being a baby or toddler in a lot of ways and now he is probably at the age of a 3/4 year old. . And I believe before not too long he will have totally caught up.

I can’t believe ‘retained primitive reflexes’ are not more widely know about. Apparently, when babies are born they are checked to see they have their primitive reflexes, that they are working. But why are children not checked that they drop them. It seems CRAZY. They could be checked at their 2 year check. Or at least ask the parents specific questions and if there are concerns they could be referred to be checked by a doctor. If this had happened this would have prevented so much stress for us and our child and would have saved the government/school/NHS so much money with referals and assessments.

Whilst we have not tried any other therapy with our child yet, we had tried various sensory items – a weighted blanket, a wobble cushion and various sensory toys that seemed to have little effect. I feel this therapy has been so astounding as it is treating the cause of his struggles and the delay itself.

If something keeps catching fire. Instead of just keep putting the fire out, find out what’s causing the fire in the first place.

I have since recommended this to my sister for her 11 year old daughter who has had fears and anxiety’s, since she was 2 years old. About little things at first like the wind, but such a dramatic response, it seemed totally over the top, but as shes got older the fears and anxiety have increased, she also has reduced gross motor and fine motor skills, and might have dyslexia. These signs were more subtle.

And guess what, when I was reading the behaviours and symptoms associated with retained pr imitative reflexes, it was a light bulb moment, that I was probably retaining my moro reflex which would explain this wierd low self esteem I felt I had that seemed to permeate so much of my life and how I reacted and coped with situations. I am now being treated myself.

I hope this description of the therapy has been helpful, and you can now go and do the research yourself and find a therapist to help you or your child. I do not receive any money for any recommendations, I am purely writing this as a way to share information about this ground breaking therapy that is so little known. Spread the word. And Good luck.

It turns out I have a retained reflex and I have now started having therapy myself, if you want to read more about that click here

Our Autism Journey

The birth…

Let’s start at the beginning…

Our son was born by cesarean section, in hospital. I had gestational diabetes when I was pregnant and so I was induced. The birth was a long, difficult, painful and scary, I didn’t progress, I had an epidural but that wasn’t strong enough to counter the levels of chemicals I was being given to induce me and so eventually 48 hours later our son was born by cesarean section.

The first few weeks were difficult. Looking back I would describe our child as high needs. He cried alot. It felt like all the time. Also to me his cries were not a gentle baby cry it sounded like screaming. His cries ripped through me and made me feel such desperation and sent me into a panic. It is normal to feel this attachment to your child. Their cries are the only way for them to communicate their needs and we as parents have to figure them out. Is he hungry? is he tired? does he need a nappy change? This was not how I pictured motherhood would be. He cried alot, and did not like being put down, for naps or nappy changes.

Breastfeeding

Our baby seemed to latch on for breast feeding ok but it hurt like hell and he could feed for hours at a time. He either slept alot or found it very difficult to sleep. He fought sleep as my sister would say. At four days old we gave him a dummy, something we never thought we would do and the nurses ‘those in the know’ don’t recommend it as it might confuse the baby with the nipple and breast feeding. hmmm. well we just had to do something.

Tongue Tie

Turns out our son had tongue tie, this was not picked up by anyone from the NHS but by a volunteer run breastfeeding clinic I visited in desperation. I remember it clearly 2 other women their they feed their babies and then laid them down on their backs on a rug while ‘we’ chatted. I kept on feeding however and if I tried to put him down he screamed. I felt very stressed and thought what’s wrong with me/us. Thankfully the breastfeeding lady spotted the tongue tie. Still getting the tongue tie sorted at the hospital didn’t seem to really make much of a difference. Breastfeeding stopped hurting around 9 weeks, aaahhhhh, finally.

Black Wednesday

I remember a young health visitor came for a visit to the house and asked hows it going. I said how do you stop this, my son wailing in the background, this isn’t normal surely. I was at my wits end, she just showed me a bunch of leaflets, now I have a temper on me and it took all my strength not to lose my shit in front of her. Safe to say I did not let any more useless health visitors into my house. That day became known as ‘Black Wednesday’. I went upstairs to bed and told my husband he needed to look after the baby I didn’t want it near me. I cried alot and slept after about 9 hours he asked if he could come in and the baby really needed a feed. (luckily we had got our baby on a bottle early at the hospital out of desperation so it had been fed). And I had calmed down.

Crying

Our baby hated being put down. But don’t all babies. I remember the first time I tried to leave the house when my husband had gone back to work (He worked from home thank god!) I took our son out for a walk in the pram, he screamed the whole time. He did not like being laid down on his back. I made it to the top of the road before I came home. And my husband said he could hear him crying all down the road.

Osteopathy

After a month we took him to see a cranial osteopath. I swear by these and go to see one for myself anyway. They laid him down on his back on a pillow, and started working (its very subtle how they do what they do) and instantly he stopped crying. It felt like the first time in a month he’d stopped crying. I nearly cried out of sadness … why hadn’t i taken him sooner. She explained that even though he had been born cesarean, probably his neck was crooked, this stopping him coming down and the birth progressing as it should, but with every contraction it would have been trying to push him down, like he was being shoved into a wall for how ever long the contractions lasted. He was in agony….no wonder he was crying/screaming constantly and did not want to lie on his back. I know how i feel if I’ve got a crook neck, its really not nice.

The Baby Whisperer

I remember I got a book called ‘The Baby Whisperer’ which was a godsend. I would rather have been able to just go with the flow and use my natural instincts but because of how my son was, it was just not what I expected motherhood to be. I thought If I fed him, he’d fall asleep easily, he’d wake up and coo. But it was just not like that. The book talked about getting baby into a 3 hour routine at 3 months old and this worked. It helped me to try and figure out his cries to know what he was telling me. So he fed, slept, awake on a 3 hour rota. feed, sleep, awake, repeat…. Sounds unnatural to some maybe, but it really helped him and me. At 4 months it changed to a 4 hour routine. I remember at 4 months finally feeling like we turned a corner and I was enjoying motherhood. I felt happy, my newborn turned into a lovely little person with a lovely smile.

Sleep

At first our son only slept in the baby carrier, it was an effort to get him to go off. Then he could be pushed in the pram. To start with his naps were for only 20 minutes only and gradually increased to 30 minutes, then 45 minutes, then an hour. Eventually when he had one long nap I finally was able to get him to sleep in his cot in the middle of the day for a whole 2 hours. Momentous.

Dummy

We gave him a dummy at 4 days old. He loved his dummy, it was very soothing for him, but eventually we were just using it to get him off to sleep. And at night we got a ‘Dummy Bunny’ toy with a dummy on each limb. Which helped him to eventually sleep through at 8 months old.

Milestones

Our son met his normal milestones. He sat up at 6 months. He still didn’t like being put down so not sure about rolling over. He crawled at 8 months and walked about 13 months. So everything seemed happily normal after a very stressful start.

Signs

Were there any tell tale signs about him being autistic. Looking back there were things that I thought were noticeable or a bit different. Maybe they meant something or not. But I noticed them.

Dribbling.

Some babies are dribbly babies. And that was our son. He went through 10 dribble a day. But he was still really cute. He dribbled way longer than most other babies until he was 2 1/2 – 3 years old. I went to the doctors, to check it was nothing serious, encourage by my mother in law and the doctor just laughed and said in all my years I’ve never had someone ask me about that. Ok helpful. He also mouthed everything. Everything went in his mouth. I used to give him a toothbrush and a wooden spoon to chew on. All his baby books were chewed. A sweet little reminder when we read them now even when he’s 6 years old.

Speech

Our son was an early talker. I took him to Baby Sing and Sign classes, which he loved from 1 year. They use nursery rhymes and songs with signing. Eventually babies can make these signs even though they can’t talk, they can understand so much and they can still communicate. Regular signs we would use together were ‘eat’ ‘milk’ ‘more’ ‘nappy’. ‘finished – it’s all gone’. He started saying words by 18 months. His first other random word was bubble. Our son was the first baby in our ante natal group to talk.

Social

Eventually he seemed like a happy normal baby. They aren’t supposed to socialise. He didn’t like getting dropped off at nursery. He seemed to be fine at first but as he got older it got worse. Eventually when it was a nursery day, he would say things like, ‘have a bath’ and ‘go to bed’, it was really tough hearing him say those things, as these were things he really didn’t like to do. So how much must he not want to go to nursery if he’d rather do those things. Was I being a weak, pathetic mum, do all children not like going to nursery. Is he just very sensitive or mollycoddled.

Playing

Around this time age 2 – 2/12 he also became clingy and wanted my attention alot and did not seem interested in playing with any toys. It seemed strange, I asked friends about their children, they suggested, ‘have you tried puzzles, or play dough, or cars and a garage, or trains’. Maybe we just had really rubbish toys but he just wasn’t interested in anything.

Nursery

When our son was 2 1/2 my husbands job required him to move for work and either he could work away for the week, or we could move as a family. It was in my mind, if we all moved I could pull him out of nursery. And so we moved and I looked after him full time for 9 months before he started preschool at 3 years old.

Playgroups

I tried going to some playgroups to make friends, but he hated it. He wouldn’t let me relax and chat so it became a bit pointless. I did make a few mum friends and we had play dates they seemed to go ok. I remember one mum, her child used to talk so much and ask so many questions. Ours never did. I knew he could speak so didn’t really think to much about it.

Starting preschool

Our son potty trained very well at 3 years old when he was due to start preschool. Preschool was just mornings to start with. I was concerned about it, so questioned the preschools about doing a slow settle. Only one seemed to be on board with this, but probably thought I was being a bit pathetic. But I obviously had concerns unconsciously about my child. I did a slow settle for a week and stayed in the room, but at a distance, gradually nipping out the room now and then and increasing the time I was away. By the end of the week he was settled. It was a success. I started him 3 days a week and started him at 1 hour a day and eventually built up to 3 mornings a week 9am-12pm.

Outside of preschool

However while preschool seemed to be going ok, he had a massive meltdown like i’d never seen before when i met my friend and her son. He was so angry and jealous and hitting the other child. I did not know what to do, it totally came out of the blue. I felt so alarmed and angry, I did not handle it well. I then felt so ashamed at my over reaction. I was not calm. I felt while he was settling at preschool perhaps it was best to limit his social interaction out of preschool so he wasn’t too overwhelmed. To be honest I didn’t know what to do for the best, but I was starting to go with my natural instincts for what was best for my child. But also I was overwhelmed. And so began the social isolation for me and my child. While it probably suited our son, it was not great for me.

Preschools concerns

During the first term, the preschool teacher said, nothing to worry about but can we have a quick chat. She raised some observations about him not joining in or being very engaged. I asked what he did and they said he laid around on the rug a lot. Oh i thought, he does that a lot at home, is that not normal? I was a bit defensive as I’d been concerned about him starting school so young at only 3 years old, because he was a summer born child and put it down to that.

Spring Term

Returning to preschool after Christmas we waltzed in thinking everything would be fine, but that 2 week break seemed to set him right back, he was anxious and clingy and screaming and crying about going and being dropped off. So I had to repeat the slow settle again and after each break it was the same, but by the end of the school year he was doing 3 mornings and one full day. Again concerns were raised and they asked if it was ok if he was refereed for some more support, which i agreed to. There was never a mention of autism or any label used. Outside of school social events and encounters were still stressful, he seemed to have no interest in other children and was only aggressive or jealous. I supposed it was normal toddler behaviour but it did seem extreme and I just didn’t know how to handle it. He had gone from a placid, calm infant (ok he screamed a lot as a baby, but once we got into a routine at 3 months he was great) to this anxious angry child.

Referral letter

The referral letter came through and it said Autism services at the top of the letter. I was in disbelief. I said to my husband he can’t be autistic why would they think that. I’m afraid I knew little about autism and all I really could think of was Rain man. My husband said maybe he’s got Asperger’s (his nephew has it) and the penny dropped. I felt so sad and emotional for myself more than anything. My beautiful boy what would this mean.

Oh! Autism

So now we had a suspicion of Autism. Once I got my head around it, it actually helped. We moved back to Bristol for our son to start Reception at just age 4. The teachers were understanding of our request for a slow start and settle. We had to start the referral process again as we were in a new county . This took 17 months to get the diagnosis of autism or ASD that we had suspected.

What a couple of days

The Educational Psychologist Visit

On the 2nd last day of the school year an Educational Psychologist came to assess our son at his school for his Education and Health Care Plan (ECHP) assessment. Talk about leaving it to the last minute!

The Ed pysch assessed him for 45 minutes and then we came into school for a meeting with her and his class teacher. In this meeting we learn that our son…

sat on the carpet with his class for the first time in a whole year!
did an educational task for the first time in a whole year!
joined and sat for a whole assembly for the first time in a whole year!

WHAT….This is Amazing news!!! This is ground breaking.

I felt such a mix of emotions, happy and relieved he finally started to show some progress, but concerned that the Educational Psychologist (Ed psych) would be getting the wrong picture of our child, his needs and the amount of additional support the he needs and has needed to get to this place.

But bear in mind our son has spent the whole year not joining in with the rest of the class but sat separately in a book corner, while the rest of the class either sit all together having carpet time or at their desks.

The Book Corner

The book corner, which was always there in the classroom quickly evolved into being our sons safe space. It has allowed him to be able to look out and see what’s going on in the rest of the class, but gives him some separation, which helped him feel more calm, settled and secure. The book corner has a comfy chair, books, bean bag and toys for him to access. But as a parent you can’t help feel that he is excluded, he stands out and does not really fit in. But it has been his choice to remain in the book corner and helped him to manage his anxiety.

A workstation

Initially, in Reception an Ed pysch had suggested our son have his own workstation in Y1. Why?

I guess because this is a strategy they try with other children with ASD, a bit of a one size fits all strategy in my opinion, considering our son had not done any typical learning in Reception, had done no phonics, and could not read or write or hold a pen.

But the school listened and gave him his own workstation. However, it was a separate desk, facing the wall with his back to the rest of the class. I guess they thought he needed his own personal space and less distraction to help him manage. I personally did not like this set up and I don’t think he did either, talk about making him feel excluded. As soon as he started Y1 he started dysregulating and showing challenging, physical behaviour, that he had not shown in Reception.

It was my suggestion that the desk was not working, he felt excluded. I can’t remember how the book corner became his safe space in the Y1 classroom, who suggested it or whether it was somewhere my son was naturally drawn to. The teacher tried to get him to come out of the book corner to come and sit on the carpet and do carpet time, but he never wanted to….until they asked again on the last day of term….and he did!!!!!

In that meeting with the Ed pysch, we were informed about those 3 breakthrough events that our son had finally achieved on the very last day of school. Great news, but here the Ed pysch was assessing our child and his educational needs, would she be thinking yes this child seems to be doing fine. NOOOooooo! They were not seeing all the strain and stress and challenges both our son, his teachers and us his parents had experienced over a long tough school year.

The Assessment

I did like the Ed pysch, I liked her manner and thought she was good. It does annoy me though, that initially they want to focus on our sons strengths, as a parent with a child with SEN (special educational needs) it feels like they are trying to gloss over the struggles. But I can understand why they do this. I felt she helped us come up with some realistic outcomes to work towards and achieve by Year 4, that reflected his needs and struggles. They were clear, concise outcomes, that by Year 4 we would be able to assess how he had progressed and whether he had achieved these for each of the categories:

Cognition and Learning
Numeracy and Literacy
Social and emotional
Sensory

However, I felt suspicious during the meeting. Even though I knew what the purpose of the meeting was and she explained it, I did not know exactly how the meeting would run etc. I did not realise we would be setting goals / outcomes together. If I been told in advance think about some goals I still don’t think I would have been prepared but to be fare her suggestions, were good and I did feel they reflected our son.

At the end of the meeting I asked if she would quantify and specify 1-2-1 support and she said, ‘I don’t think I can do that’. Aahhhhh. But you can. I will not go into all the information I have read about ECHPs and the SEND Code of Practice here, suffice to say we will have to wait 3 weeks now for her to complete and submit her report for our sons ECHP to the LA, and then wait a minimum of 2 weeks for a draft plan (if they agree he needs a plan that is)….and then wait 4 weeks for the final plan. But that is if they manage to stick to the statutory timescales required for an ECHP, which they are already over.

Hello, an introduction

I am a mum with a 6 year old boy with Autism. We live in Bristol. I’m 46, I had my son when I was 40 years old. This blog is about…

our life
our parenting journey
our autism journey
my son’s groundbreaking therapy.
our trials and tribulations.

I think that covers it!

This blog is born out of the fact I have kept a journal or ‘my morning pages‘ since my son was born as a way to cope. And now I’d like to keep it online. To find out more about what ‘my morning pages’ are, read that blog here.

Perhaps our story will ring true with others, its good to know you are not alone, its good to connect with others. Perhaps I can share some of the advice and support that has really helped us.

I did think about calling this blog… Autism – What now! As it was a shock to find out our son had autism. It feels like a roller coaster ride of emotions and fact finding. All this I wrote about in my journal and it really helped me emotionally and mentally. It has been a challenging few years and I still feel that we are not out of the quagmire yet. I write as a way to try and help me come to terms with everything. I found writing my thoughts and worries down on paper helped get things off my chest, settle my mind, and lessen the worries a little.

This journey can feel very lonely, as even with the best will in the world family and friends can find it hard to fully understand the struggles.

But the main reason to start this blog publicly online now is to keep a record of the progress, benefits and the successes of the amazing therapy our son has been receiving.

I think the therapy is little known by the NHS or many experts in the Autism field. At best I think it would be considered an alternative therapy like homeopathy, keneisolgoy, osteopathy, or reiki. Something the NHS probably knows little about and so would or could not recommend as it has not been scientifically or clinically tested. But this therapy has changed our sons life so dramatically. I am wary of using the word therapy, but will explain more in my Therapy post here.