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The Colonel delivers

Dylan happily got into the queue, absolutely beaming at the prospect of being next. Despite his difficulties with queuing and waiting, he knows this bit, the bit where you step forward and begin your purchase! He already had his order set up on his iPad.

‘Can I have chips chicken nuggets corn Pepsi please?’

The fast food restaurant is busy for a Wednesday evening, there was a queue of 3-4 people ahead of us when we arrived but they quickly got served and seated, I wonder why there are only three people running the shop and the drive thru, a gentleman with the name badge ‘Liam’ seems to be handling the service well but it’s a full on job and he’s rushing from one end of the counter to the other fetching, carrying and serving.

I check that Dylan’s iPad message has not been accidently erased during the skipping and flapping of excitement. It saves time having it set up ready and keeps Dylan focused on the task in hand. It’s still there. Dylan’s not familiar with the KFC menu and I’m not sure if they do chicken ‘nuggets’ and don’t call it by another name. Still when I asked ‘what would you like to eat?’ this is what he answered. I don’t interfere.

‘Next please’

Dylan goes skipping forward to the counter, shows Liam his iPad and presses the button. The iPad booms out his request and you can see the server is a bit taken aback and has not listened properly but he has noted that it’s the iPad talking and not Dylan. Liam glances closer at the iPad.

‘Oh, okay, no problem… is that popcorn chicken?’

Dylan skips and flaps at hearing his favourite item relayed back to him.

‘Yah bee, doah, doah, doah,’ repeating his approximation for ‘cola’ over and over again so as the server doesn’t forget that too.

Liam looks blankly at him.

‘So is popcorn chicken okay?’

No answer – as far as Dylan is concerned we’ve already established the food – what’s next?

Liam is starting to look rattled and panicked. Beads of sweat forming on his creased brow; he answers his own question,

‘Popcorn. Popcorn Chicken? That’s okay yeah?’

Liam punches the item into his till and then fell foul to the next cardinal sin of pre-programmed fast food workers….

‘Is that large or small?

Now by this point I am usually intercepting; I mean Jeez! The lad has told you what he wants and we have all witnessed enough of an interaction for the whole chicken shop to realise that communication is difficult yet you need to continue undeviated from YOUR companies rote of unnecessary questioning??

At the point I would usually step forward and rescue Dylan from the perceived awkwardness of the situation and relieve the worker of the embarrassment of not even being able to serve food indiscriminately.

Not today.

Today I’m tired.

I’m tired of having to give the impression of making everything alright for Dylan by becoming involved. It doesn’t make everything alright because the queue is prevented from building up, or because the great British public are saved from waiting a few more minutes before stuffing themselves.

No.

Actually the only person in this interaction that matters is Dylan, and do you know what, looking over at him, he was looking directly at Liam, he was interacting, he wasn’t stressed, he was happy he was being understood, he was working it! Dylan was okay.

So I left him to it. I stood back, pretended to be the next faceless stranger in the queue and pledged that I wouldn’t get involved until Dylan turned to look for me or gave me the nod to come over and help. So I didn’t.

So Liam is really blank now, there’s another family of five walking in through the door to join the queue of three groups of people that have already built up behind me.

Then like a lightning bolt Liam got his shit together, a flash of inspiration came across his face.

‘Wait there’ Liam says (like Dylan would be going ANYWHERE until he got his food??!)

and he dashed over to the kitchen and came back with two containers for popcorn chicken – one large and one small.

‘Would you like large or small?’

and pointed to the appropriate container, Dylan within a second pointed to the large (obviously!!) and the relief over Liam’s face is beautiful.

Liam got it. Just like that. Dylan was as pleased as punch.

The rest of the interaction went smoothly. Although Liam insisted on showing Dylan his order on the till screen to check it instead of reading it out. (why do people seem to think Dylan can’t hear?) Otherwise it went really well. Dylan got his food order paid and sat down.

I approached Liam for my order.

‘Just coke please. And you know, you did really well there. Most people don’t even realise the order comes from the iPad’.

Liam nervously laughs. Obviously just realising Dylan’s with me and I saw the whole interaction.

‘It’s a good computer he has there. He did well with it.’

I nod and smile in agreement.

Yes Liam, he did.

#SeeMeSeeMyAac

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Leading paths and crossing roads 

Success is where preparation and opportunity meet.” Bobby Unser

Road safety has always been a concern. With Dylan’s inability to foresee the danger in cars or negotiate traffic the lack of road safety has been one of the biggest blockers to Dylan’s developing independence. 

Today we went to town and negotiated a total of 10 pedestrian crossings. The type of crossings where you press the button and the traffic lights turn red to stop the flow of cars and the green man lights up to indicate it is safe for pedestrians to cross. 

Now these crossings are tricky for Dylan. Often he can see both the road light and the crossing man light so to indicate to Dylan which one he actually needs to be paying attention to is a difficult feat. The common saying ‘green means go’ has a different outcome if you are a pedestrian applying the rule to the green road light for cars.  

In addition to the confusion of which light to watch, Dylan Also has such strong imitation skills that even when he knows that he should be waiting on the kerbside for the light to change if he sees other members of the public brush past him to cross the road he can often think this is an indicator for him to follow suit. The results of him stepping out into flowing traffic could be disastrous.

So to practice developing this skill we stop at each and every set of traffic lights, Dylan presses the button and I say to him straight away. 

‘Can we go now?’ 

Dylans clearest approximations for speech are ‘yah’ and ‘non’.  He quickly answers me 

‘Non’. 

And so ask him over and over again until the lights change and he answers me differently with 

‘yah’.  

When Dylan gives the ‘yah’ we cross the road.

Today we did this for all 10 crossings and all roads were crossed safely and swiftly. Towards the end I didn’t even look at the lights to check his answer and trusted Dylan to tell me when we could cross safely. A couple of times whilst waiting for the change I made out like I was going to take a step out off the kerb. Dylan again would tell me;

‘Non!’

Less and less I needed to ask if we could cross but Dylan would still independently whisper to himself, almost as a reminder; 

‘Non, non, non,’ 

(lights change) 

‘YAH!’  

I told him at the last set of lights how well he was doing keeping us all safe across the road and he took a moment off from his duty to pose so proudly for a picture just as the lights changed.

‘ YAH!’

And we’re off!

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One year.

It’s been a whole 365 days since I started wittering about my observations, thoughts and experiences with Dylan. 

I’m so glad I did. 

I remember feeling a year ago that things were changing and desperately did not want to be so involved in the changes that I missed reflecting on them. 

Without writing down the thoughts and experiences as they occurred I would have never remembered them all individually. Through this blog I have shared some of the most honest and painful parts of our lives. To go back and read last summers posts already fills me with so much pride and steely determination for Dylan’s future.

During this time we have also had 136 followers join us. Your continued support and comments of positivity, advice and support is more valuable that you would ever realise. 

Thank you all so much for coming with us and sharing our journey. 

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When lessening financial cost increases personal cost 

Its been reported in the last couple of days that NHS referrals for assessment and diagnosis of Autism Spectrum Disorder (ASD) may cease in South West London.

Children will only be considered for a referral to check for autism if they have an additional mental health condition that requires treatment, such as attention deficit hyperactivity disorder, or depression.

The decision would affect children in five London Boroughs. At a recent speech and language conference I attended only twenty miles away from London, autism was reported to be the most complex element affecting speech development and gives professionals the biggest headache of all childhood communication disabilities. Simply by a health authority ignoring a child and their difficulties the childs problems will not go away and only worsen without adequate recognition and support.

Repeatedly we as parents are told that early intervention is crucial with both autism and communication difficulties and without this intervention there will no doubt be a detrimental effect on the child, the family, the school, as well as the wider circle. In addition to this there is a high risk is that the child could develop mental health issues which could further debilitate them for the rest of their lives.

We are yet to see whether this decision would be followed through by government. However, as a parent who is painfully aware that a diagnosis is the only way to receive what little support and understanding there is out there for children on the autism spectrum. 

The idea of removing a diagnosis from children who need the same help as Dylan is quite frankly appalling. 

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Cracking yolks 

The suns shining and the schools are out – whats a bored child to do? Well Grace hoped to make carrot cake with Dylan today. Not being totally organised with ensuring she has all the ingredients before making a start, Grace sadly had got all the ingredients opened and half mixed before she took a chance glance and realised that the eggs actually expired two weeks ago. 

After being assured that there was *absolutely* no chance of me going out to pick up eggs at 4pm on a bank holiday Sunday Grace eventually left the half mixed powder and jug of milk before grumpily dumping the box of eggs in the bin and sitting down with me to watch endless telly.

Grace and I are well into a marathon of Speechless and Dylan comes downstairs to explore whats for dinner. I’m distracted and only notice he’s in the kitchen when there’s a small crash and Dylan comes to the doorway looking a weeny bit guilty. Grace and I go and have a look and see that Dylan, upon spotting the abandoned cake preparation decided to get the eggs out of the bin and cracked one into the jug of prepared yet incomplete mixture. The whole lot had spilt and was running off the counter top and onto the floor.

Thankfully it didn’t take long to clear up and we opened the windows to get rid of the smell. Sitting back down on the sofa Dylan pipes up with his iPad. ‘Scrambled egg’. 

‘Not scrambled Dylan. Smashed. You smashed the egg’ 

‘ Scrambled egg’ Dylan repeats again and again

‘ Dylan? You don’t even like scrambled egg’ 

Josh looks up from the telly briefly. 

‘For goodness sake mum it’s a joke. He’s telling you as a joke. The eggs are scrambled’

I look at the iPad. And then Dylan who has such an expression I just couldn’t describe.

Oh yeah, he was telling a joke. 

He’s not done that before.

Eggs-ellent 

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‘To Plant a Garden is to Believe in Tomorrow’ 

A week. What a week. Filled with emails, stresses, deadlines and assessments. 

The ongoing requirements of education on the lead up to assessment week takes us away from our hands on work with Dylan.  

Its all phone calls, documents, paperwork which all require reading, checking, approving and filing ready for meetings. 

The very important final meeting for today was cancelled.  

By us. 

Cancelled because the professionals involved with Dylan couldn’t pull their fingers out and get his reports submitted for consideration on time. 

It feels like a wasted week.

The first half of the week filled with the misery of completing negative almost traitorous assessments about Dylans lack of ability. 

The second half filled with fury that noone else bothered to complete their written requirements of misery on time. 

So today. Friday finally, but I see this.

 To glance out of the window and see Dylan tending to his beloved plants brought it all back. Realigned all priorities.

Dylan loves the garden. He waters his plants and I adore the idea of there being hope in the planting of and tending to gardens. 

This gorgeous picture reminds me that that is what this week has really been about; not other people’s opinions and requirements but about Dylan. 

And hope and belief. 

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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/