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The next generation

A couple of weeks ago Grace had some friends round.

We don’t often have people over, historically it has been overwhelming for Dylan and secretly Dad and I have always felt a bit vulnerable about the sometimes innocent cruelty of kids to one another, especially to those who are different or misunderstood.

Don’t get me wrong; we have never had any issues. Josh and Graces friends have grown up with Dylan. They see him in the playground at pick up and drop off times and will often innocently ask valid questions to the younger two about Dylan. 

Children are naturally inquisitive and its important to ask about things you don’t know or understand. Ultimately its how people learn and I fully encourage this. However I am also aware of the burden to the little ones being Dylan’s advocate to the big wide world. Home should be that little bit of sanctuary where they don’t have to protect or defend him.

But the wee ones are growing up and have needs themselves too so before the half term break we agreed and had a small gaggle of Graces friends over for a picnic and a play.

Well, what a beautiful set of young souls. They played both with and around Dylan; involving him when he wished and accepting when he didn’t. Communication was no issue and his flicking, flapping and straw knawing was totally overlooked. He sat in the garden and ate with them as pleased as punch.

Faith in humanity and hope for the future restored. 

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Making a statement 

Dylan has his EHCP meeting on Friday and in preparation for this we have had to complete a form outlining Dylans wishes and plans; like it makes a blind bit of difference.

I’m struggling to hide my pessimism with the whole process but we’ve done as we’ve been told and Dylan’s SEN office had this landed in her inbox this morning.

Section A 

ALL ABOUT 

Things I’m good at (written by Mum and Dad)

Dylan is good at football and basketball. He is good a riding a bike and hanging out washing. He makes a great cup of tea and is incredibly honest.

Things I like, things I don’t like and new things I’d like to try (written by Mum and Dad)

Dylan loves food, mostly fast food such a McDonalds but he also loves a curry, pasta and any good gravy dinner with meat and two veg. He likes his food heavily seasoned with salt and pepper. He likes to drink cola and hot chocolate (but not together) He doesn’t like milk, cheese, butter or sandwiches unless it’s a marmite sandwich (with no butter).

Non-food likes – Dylan’s likes to swath himself in blankets and ensures that he has his head covered. He adores bathing and will spend many hours in bubbly baths. He likes to play games on the iPad or watch a range of kids TV shows including Roary the racing car, Paw patrol and SpongeBob square pants amongst many others. He enjoys water activities including swimming, watering plants and washing windows.

Non-food dislikes – Dylan hates the noise of handriers, motorbikes and loud unexpected noises. He is very unsure of toddlers, babies and puppies, usually because of the unpredictability and volume of their noises. Dylan isn’t keen on getting up in the morning and can take a long time to be coerced out of bed.

Dylan is keen on trying most things once it has been explained to him. He has recently been rock-climbing although he was nervous of this at first. Dylan has also recently tried yoga and this is becoming more bearable as he is getting used to what is expected of him.

Things I admire about me (Written by Mum and Dad)

Dylan knows he is fast when using his IPad as he is told this often,  

 Things other people admire about me  (Written by Mum and Dad)

Dylan listens to instructions well and tries to please people around him. He will always share with other people.

What’s working well, what’s not working so well and what I’d like to change



Dylan works hard at learning; he has less anxiety since leaving school. Dylan is attending more social groups which exacerbates his anxiety although this is improving with increased exposure. Dylan’s communication is improving hugely with the iPad and he likes that fact that he can increase his vocabulary independently with it. Dylan uses the IPad to communicate with a wider range of people which makes him happy.

Dylan doesn’t have enough exposure to mainstream peers of a similar age that can model appropriate behaviours for him and allow him to develop friendships.

Dylan isn’t given enough time to respond to people using his iPad; it requires a lot of education for the wider world to know how to communicate with Dylan’s iPad.

How I need to be supported to be heard and understood 
Dylan needs access to his IPad, fully charged at all times to be able to communicate his needs. Dylan requires 1:1 support at all times by an adult who is familiar with Dylan and his needs to ensure his safety with roads and strangers and to facilitate communication with others. When Dylan’s needs are not understood he can self-harm and internalise his frustrations, the trigger points of which can also be overlooked by those unfamiliar with Dylan and his needs.

The important people in my life; family, friends, favourite people (even pets)  

Name: Relationship:

Daddy Dad

Mum Mum

Josh Brother

Grace Sister

Hal Dog

Dylan’s story so far 

(Provided by Mum and Dad)



Dylan was born in 2003, a happy and healthy baby, did not develop speech and so was referred to SLT and had a diagnosis of autism by age 3. He attended an enrichment nursery place before moving on to MLD school age 4. Progress was non-existent and Dylan was bullied and frightened by the unpredictability and aggression of the other children in the school. Despite voicing concerns to the school about lack of progress and Dylan’s deteriorating mental health we eventually had no option but to remove Dylan from his school placement and to educate him at home.

Five years on Dylan has progressed although not enough to catch up with his peers but he is no longer is as anxious as he was previously. He enjoys his academic lessons and is progressing well at developing life skills.

Dylan’s aspirations and wishes e.g. education, play, health, friendship, further education, independent living, higher education, employment, family, next important steps

Dylan is very motivated by money and has expressed an interest in being employed when he is an adult. He would like to have friends and be able to play outside with his brother and sister.

Dylan’s family’s story

Dylan was our first child and was quickly followed by his younger brother and sister before he was diagnosed with autism age 3. Dylan’s education has been unsatisfactory with only the bare minimum being provided. The formal schooling system has felt to us as parents as glorified babysitting rather than him gaining any sort of education. We felt trapped and distressed by the lack of support with regards to Dylan’s inability to cope with the school place he was in and it was only as an absolute final straw that we took the plunge to remove him to try and make things better for him ourselves. Since then we have not had support or help from the local authority to educate Dylan despite repeated requests. Thankfully, due to our dedication and love for Dylan we have nurtured him back to being happy and responsive to learning. This has taken years to build and required a parent at home with Dylan full time which has had a knock on effect for the whole family financially. Dylan’s brother and sister Josh and Grace love Dylan very much, as he does them. 

Family’s aspirations and wishes for Dylan e.g. education, play, health, friendship, further education, independent living, higher education, employment, family, next important steps

We would like Dylan to develop a circle of friends and acquaintances. We would like him to be able to work in some capacity and earn his own money. We would like Dylan to be as independent as possible to manage his own health and to be able to keep himself as safe as possible. We will always have a place here with us if Dylan wishes to live with us forever. We want Dylan to be happy.

Summary of aspirations and wishes for Dylan (Long term hopes and dreams of the family or young person)


To be happy


 We’ll be seeing them Friday….
Photo courtesy of ‘A Very Special Needs Resource’  https://www.facebook.com/AVerySpecialNeedsResource/

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April is Autism Awareness Month: Day 2 – Peace, Love and Understanding 

**April 2nd is World Autism Awareness Day -. For anyone who doesn’t have their head in the clouds and is already AWARE of autism let’s spread that gesture to ACCEPTANCE and UNDERSTANDING.I can’t speak for all people with autism just because I know one and I’m not going to claim to be able to. Just like I can’t speak for all women or parents just because I am one.

But I *do* know Dylan and if I can increase the worlds understanding of Dylan and his autism using everyday examples then hopefully we can all create a society that has insight and understanding for him and others like him.

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The increasing incidences of people being diagnosed with autism means that we all potentially could be coming into contact with those affected by this hidden disability many times a day. 
Imagine waking up one morning and you’re in a foreign country, no one speaks your language clearly and certainly no one understands yours or what you’re trying to say. 

What would you do?? 

Where do you go for help? 

Who do you turn to for understanding?
Dylan wakes up every morning facing these challenges. Please be the one who asks him and others like him, ‘How can I help?’ ‘What do you need?’ 

Don’t pretend not to see him or his despair but offer him comfort and understanding. 

For this is how he will learn to find peace with the foreign surroundings that he faces each and every day and will continue to do so for the rest of his life.

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April is Autism Awareness Month: Day 1 – Queues

April is Autism awareness month. For anyone who doesn’t have their head in the clouds and is already AWARE of autism let’s spread that gesture to ACCEPTANCE and UNDERSTANDING.

I can’t speak for all people with autism just because I know one and I’m not going to claim to be able to. Just like I can’t speak for all women or parents just because I am one.

But I *do* know Dylan and if I can increase the worlds understanding of Dylan and his autism using everyday examples then hopefully we can all create a society that has insight and understanding for him and others like him.

Day 1: Queues.

Dylan can appear rude because he often doesn’t understand or adhere to social rules such as queuing. To Dylan if he wants to buy something in a shop and sees a cashier at the till then he wants to go straight to the till and pay.
That’s just his logic.

We are working hard on teaching him how to recognise queues and the behaviour that we all keep to when queuing:

** don’t stand too close to the person in front,

** ensure you move forward when the person in front of you does,

** don’t skip around

** don’t accidently hit anyone with your basket as you skip (even though it’s all you can do to keep yourself mentally focused on waiting in line.)

These are all factors that Dylan has to constantly be reminded of to maintain a successful queue. Queuing is a social process that you or I may take for granted but the purpose and rules of queueing are lost on Dylan because of his autistic logic; to him it seems like a pointless exercise which prevents him paying for his beloved crisps and getting the hell out of a busy shop.

So please, if he pushes in front of you or doesn’t queue without skipping or humming; don’t stare, but smile and give him time to get it right.

Theres a lot of work going on there.

#autism

#AutismAcceptance

#ItTakesAVillageToRaiseAChild

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Retail therapy 

Wowsers this week’s been a whopper. 

We as a family had some good news last week that there may be some progress with finding a bigger home for us. 

“That’s great” we thought 

“Maybe, just maybe, we could move by Christmas time!?”

 Fast forward only two days (thats right two days!!) and we’re standing outside a beautiful 4 bed house with the papers signed and the keys in our hands!!

Yes it’s been positive, yes it’s been quick and yes Dylan doesn’t know what’s going on! With very little time: we need to have completed the move by early March- and absolutely no preparation for moving made, a lot of the physical graft and preparation has fallen on Dad. Fine usually but when you’re home educating that means Dylan too!

So after a few days of hanging around hardware stores and sitting in a cold dirty house for hours we took Dylan out for a bit of Dylan time.

Hoovers. It’s not the sucking motion,  it’s not the appearance and it’s certainly not the noise they make but Dylan loves a good Hoover. Its the manufacturing stickers on the back that Dylan is interested in. He moves each appliance so he can see the sticker on the back. I followed him around for about 15 minutes doing this. Afterwards much calmer. Oh and hungry, we skipped dinner; off to McDonalds we went 🙂

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16.1.53- 12.02.08

Today would have been my Dads 64th birthday.

A simple man, we had a complex relationship when I was growing up; primarily due to me and my difficult ways; which seemed to smooth out once I settled down and had Dylan. As a family we would visit my Dad and his family weekly.
In his own way my Dad adored Dylan. Not at all a ‘baby’ man, he would hold Dylan if asked but was much more comfortable interacting from afar while Dylan was in my stepmums arms by making silly faces and blowing raspberry noises in his direction.
As time went on Dylans Dad and I were becoming subtly alarmed at the whispers from professionals about Dylan’s abnormal development; primarily his lack of developing speech.

However my Dad was full of reassurance and would tell us about an extended family member who ‘didn’t speak a word until he was seven years old, now he’s absolutely fine’.
I’ll never forget having to ring him and my stepmum on the evening of Dylans clinic appointment to confirm Dylans official diagnosis of autism.

I was unable to back this news up with any treatment plans or words of comfort to them as that afternoon we were literally given the news at the clinic and sent on our way. After breaking the news and biting back my tears my dear Dad responded with ‘Well, don’t worry. It doesn’t change anything does it?’

And that was just it. For him nothing changed. For the rest of my Dad’s life he never asked about Dylans appointments, assessments or progress. He continued to pull faces at Dylan whenever he would glance at him. He would make silly noises and play peekaboo with Dylans beloved muslin cloth.

It didn’t matter.

The diagnosis didn’t matter.

Nothing changed.

I appreciate that he didn’t ask about any assessments, not because he didn’t care but because of his need to keep things straightforward.

-Don’t rock the boat.

-Don’t worry about things you can’t do anything about.

I get that, I really do.

I often wonder what their relationship would be like now; Dylan would have really rocked my Dads boat.

As time went on there was no hiding the extent of Dylans disability and when this involves a loved one it initally comes with shock and heartbreak.  I wonder how my Dad would have coped with that and the ripple effect that managing autism had had on all our our close family over recent years.

My Dad became ill with cancer when Dylan was 4 and he died 18 months after. Dylan was still very vacant throughout this time and totally nonverbal, he was lost.

But still my Dad would speak to him, trying to entice him to echo his words, even if it was

‘Dylan… pub?’

Nope. Dylan wouldn’t even look at him. Totally unresponsive to his name, with no interest in people or things Dylan was just lost in his own stimming world.

But still my Dad tried, on every single visit, to see if Dylan would copy his speech.

Looking back I really appreciate that; the trying, the effort.

See there was no fakeness with my Dad. If he couldn’t be bothered with something he simply wouldn’t bother. But with Dylan he bothered, he always bothered.

Although he was never a lover of modern technology (he could only nearly work a mobile phone) I like to think that my Dad would embrace talking to Dylan with his iPad.

Hell now, Dylan could happily repeat ‘pub’ back to him and they could skip off to the local for a bag of crisps and a coke. Actually I could easily see that being a regular iPad request of Dylans if my Dad was still around!

Having looked back I painfully realise that Dylan would probably now dote on my Dad just as much as he doted on Dylan back then. By now I imagine their bond would be strong; both undemanding and comfortable in each others silence.

The realisation of this lost relationship makes the sadness even stronger.

Both sadness for me at the loss of my Dad and sadness for Dylan at the missed opportunity to have another loyal member to his small team of support.

Happy birthday Dad,  you are dearly missed xxx

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Proprioceptive Dysfunction: Blankets

Just out of interest I asked Josh and Grace;

‘Dylan always has a blanket on his head or his hood up or his head covered; do you know why?

Josh felt it was because the light might hurt Dylan’s eyes or maybe he wore it as he was worried about loud noises which might make him jump.

Grace felt that Dylan might be cold and so used it to keep warm.

I explained the insight that Dad and I got from a recent talk about Proprioceptive Dysfunction. For those not aware of the Proprioceptive sense it basically means to have an awareness of our own bodies in space and time.

– We know where our hands are without touching them.

– We know we are upright when standing and for example can easily gauge when there is a slope of step when we are walking. For this we can plan for the motion of adjusting to our environment as we are aware of where our bodies are in space.

Dylan has a dysfunction with this system. He will often appear to be “limp” and lethargic all the time despite being very active. He will frequently bump into objects and people accidentally and will trip and fall often, this is all due to him not being aware of his limbs or feeling able to maintain awareness of where he is in relation to himself or anywhere else. All elements of this affect his confidence and ability to integrate with others.

To explain this to Josh and Grace I used the example of our faces and heads.

‘How do we know we have a nose or a head on our neck without reaching up sand feeling it? – We just do, because we have this ability to sense it. Dylan doesn’t have this so much so maybe having a blanket over it helps him feel grounded and safe, so he knows where his head is.’

Both Josh and Grace looked at me thoughtfully, smiled and accepted it as a little nugget of Dylan wisdom. 

Another little step of understanding.