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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/

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April is autism awareness month: Day 30 – The Village

April is autism awareness month

Day 30: The Village

Public awareness events such as ‘locked in for autism’, autism awareness month and ‘light it up blue’, brings autism to the forefront of peoples thoughts and with every event there is a degree of further understanding, further insight into the everyday difficulties experienced. 

But then invariably May comes, the marathon is over or the next campaign starts and the focus shifts away from autism. 

And that’s fine – there is more to life than autism.

For Dylan nothing changes, he is who he is and autism runs through him like the writing through a stick of rock. 

I cannot tell where Dylan stops and the autism begins, nor can I imagine if Dylan didn’t have autism or if he could speak freely, I simply cannot picture it. 

But despite these differences Dylan leaps on, every morning we are greeted with a smile, a giggle and a grunt ‘hello’. 

Dylan tries so very, very hard at understanding the complex and ever changing world we live in – the rules, the social expectations which are forever changing depending on where we are, who’s he’s with and how old he is. Every lesson learnt changes without warning but still he bravely faces every day with a grin and he continues to always try his absolute best. 

He is so amazing. He’s my hero.

Dylan is a likable young man and it has taken us many years as parents to strip through the complexities of his autism and communication difficulties and get to know Dylan; his likes, his personality and the reasons behind why he has some of the behaviours that he does. 

I have shared a lot of these experiences and lessons that we have learnt in the past 30 days. 

One of the biggest lessons learned is the realisation that as parents we can’t do it alone.

 Yes, we can bring Dylan up in a safe and secure bubble which protects him from unexpected noises. 

We can queue for him so that he doesn’t have to. 

We can get to know him so well that we can anticipate his every need and he won’t need to ever communicate because we will ‘just know’. 

But where does that leave Dylan? 

He is a fit and healthy lad who by rights should live until he is in his 70s, he should outlive us as parents, what would happen to him then? How would he cope? 

It wouldn’t be fair to leave him so vulnerable.

That’s where the Village comes in – like the proverb ‘it takes a village to raise a child’. It does – it really does. 

We can prepare and teach Dylan about the world. 

We can teach and prepare the world about Dylan. 

But that’s just it, after then, it’s up to village; we as parents can’t make it work. 

Dylan can’t do it alone. 

We need you. You are the village.

The posts over the last month have been quite therapeutic to write but also reflective. I think it is important to reflect on the past and realise our aspirations for the future. This also ensures our methodology and efforts for Dylan truly has his best interests or wishes at the core,  confirming that we remain on the right path to helping him. By reflecting and discussing this publicly kind of makes the journey more purposeful, more concrete and it certainly helps it to make sense.

So looking back over the past few weeks Dylans  posts have had a recurrent selection of themes which could be referred to for when Dylan needs his village. 

1 – See him. – Don’t pretend he isn’t there. Don’t pretend you haven’t heard him, but also don’t gush at him, he doesn’t know how to handle that, any excessive interest in him confuses him as to what may be required which makes him more anxious. 

Smile, be friendly, and be normal.

2- Give him time – Everything takes longer for Dylan; don’t think he’s ignoring you if there is no response straight away. 

Don’t move onto your next customer or move away from him, just give him a few more seconds, 

May be try again. 

He can and will answer you. 

3- If concerned, look out for the watchers. If you do see Dylan or someone like him in the street, or a shop, appearing aimless or skipping and flapping and you’re unsure of what to do – providing everything appears safe – just wait and watch for a minute. 

I bet that if you look to the wider circle you will see a relative or a caregiver in the distance, probably looking super suspicious hiding behind the shelves of baking potatoes or I may be staring intently at my phone set to outward camera so that Dylan doesn’t realise that I am watching his every move. 

Chances are he is safe and being observed but please just take a minute to check, if you can’t see anyone or you are concerned then pop over to him, say hi, see if he is okay or he needs help.

4- Be aware of overwhelming senses – pretty perfume to us smells so much stronger to Dylan, a dodgy lightbulb can seem to make the lights flicker and buzz loudly, unexpected noises are intensified, a gentle, reassuring touch can be startling if Dylan is already experiencing heightened sensations from his surroundings.

 That extra bit of stimulus could challenge his concentration to keep everything focused in his head. 

Be aware that the whole environment makes things harder for Dylan – there is not a lot we can do about it but be aware that it has an impact on his ability to communicate, to remain on task and to follow direction.

5- Friends with children; I know you teach your children how to be kind and compassionate but being inclusive is not always understood by children or adults alike. 

Inclusion isn’t massive nor a big gesture, its offering to play, smile at each other, sit and eat a meal together. 

Inclusion is remembering that being in each other’s company in silence is okay. 

Taking time to talk is okay. 

To slow life down a notch so that everyone can experience it together is okay. 

In a world where teenagers are increasingly pressured to grow up into reality TV stars and live life online at a million miles an hour, my child is getting left behind. 

There are lots of really good normal people out there in the world. Lets remind the next generation that it’s more important to be one of the good ones.

6- Finally always presume competence – Dylan can see and hear everything around him, he can see the looks and the smiles, even if he doesn’t acknowledge them. 

Presume his competence, allow him an opportunity to try new things, to meet new people, to gain new experiences.  

Thank you so very much for reading xxx

#AutismAcceptance

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​April is autism awareness month: Day 29- Modelling language

April is autism awareness month

Day 29: Modelling language

Modelling is an activity which is done all the time around speaking children. Our speech patterns and the words that we use build a profile of speech in young children that are exposed to it.

It is well researched that the more you speak to and around children, exposing them to words and sounds, the more that they explore and develop their own speech sounds and conversational skills. 

Children are like little sponges and by about 23 months, the average child says about 200 words.

The lack of developing speech is one of the biggest causes of concern in children, especially those with autism. As soon as possible an alternative method of communicating (AAC) should be sought to minimise frustrations and deescalate any undesirable behaviours linked to the inability to communicate. 

Easily accessible options include Makaton (signing) or picture exchange communication systems (pictures which can build sentences in exchange for requested items) Both methods can easily be set up by concerned parents or carers and does not need to be overseen by a speech and language therapist. Youtube and various communication organisations on the internet give easy to follow instructions to show how these communication systems can be set up. 

Hopefully with time the speech will come and the communication systems will no longer be required. 

There is often a concern that early interventions of alternative communication systems can halt verbal speech but in fact it has been shown to encourage verbal speech, it makes sense if you think about it, to be without the frustration of not being understood a child can then concentrate more on the speech around them and the worth of communication is realised, giving further encouragement to the child to speak verbally.

But if you try all this and there is still no speech, like Dylan, a more robust type of communication system need to be sought. Signs and PECS are very basic – very much need or want based. If Dylan isn’t going to speak clearly for life then he may wish in the future to comment on things – to argue, to chat, to make small talk. These interactions are available on Dylan’s IPad but he need to learn how to use them. 

The methods for learning this is the same as with anyone else; modelling.

So, like a child would copy what is said to them, Dylan learns by copying what is modelled to him on the iPad. This doesn’t necessarily require a second device but it does mean that there needs to be extra time to show Dylan what he would say.

An example today; We went to the shops but Dylan left his money at home by accident. He selected some chocolate covered raisins which is unusual for him so we were happy to buy them for him to expand his range of tastes. 

So, if this situation was with Josh or Grace we would SAY ‘Ask Dad if he will get them for you’ instead I had to type into the iPad for Dylan ‘Daddy can you get these for me please?’

The downside of this is that modelling takes time. Being verbal is quicker, the location of the words on the iPad can be tricky to find and quite often there isn’t the time to find the words and model sentences or statements to Dylan unless you go out of your way to make time.

But today we had the time and we did this slowly so Dylan could see the location of the buttons so maybe the next time he would use those words himself. Dylan concentrated well on what I was doing and to consolidate the words I said them out loud as I looking for them. 

I was originally looking to say ‘Daddy can you BUY these for me please’ but I couldn’t find the button for buy – it was Dylan who reached over and pressed ‘get’ instead when I took too long looking for the buy button. So, he certainly understood what was I was trying to ask on the iPad.

Modelling like this helps in a variety of ways;

1 – It helps Dylan learn his communication system faster: There is good research demonstrating how valuable this kind of modelling is for those using alternative communication. 

2- It also helps the families and therapists get competent with the Dylan’s communication system. 

3- It’s common sense:  Think about it: How many times does a typical 1-year old hear the word ‘more’ before it is spontaneously said?? Dylan needs just as much exposure to his language system.

4- Modelling expands our sphere of influence: The more people that see the IPad be used and modelling be openly observed then other communication partners will imitate us. 

If WE use it, then others are more likely to do it and expect Dylan to use it.

5. Modelling is motivating: It intrigues Dylan, making him want to use the iPad, too. 

It’s getting to the point, like the earlier example, where I will start off a new sentence, statement or request and halfway through Dylan will push me out of the way and show me how much better he can do it.

This motivation of modelling is priceless.

#AutismAcceptance 

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​April is autism awareness month: Day 28- Schedules

April is autism awareness month 

Day 28: Schedules.

Planning is a large tool for reducing Dylan’s anxiety.

Bearing in mind every day for Dylan is filled with different lights, sounds and experiences the planning of the day gives him structure to help him feel grounded and in control.

It is impossible to plan for everything but if we can give Dylan an insight into what the day holds it can help him prepare for activities, particularly those which require extra demands on him such as shopping or big events that he may not be used to.

Dylan has a day board where he knows to move the Velcro picture across each day to indicate which day it is. Dylan controls the movement of this picture and completes it perfectly every day. This feeds into a larger more developed schedule which is broken down into times (which we have taught as a separate ABA programme) and sections of day from morning through to afternoon and evening (which has also been taught as an ABA programme) 

The coming together of previous teachings is a beautiful blend of ABA learning; fundamentally teaching the individual components or skills so that they can be chained together to make a functional process or activity. 

The adult controlled board uses laminated pictures to show various activities that Dylan has planned for the day. We use laminated pictures as Dylan is a visual learner and it makes taking in the information much easier if it’s in picture form rather than just words. We laminate them so that they last longer; Dylan can be rough with his adult led suggestions and they will get ripped quickly if not laminated!

If for example the plan is to go food shopping on Monday morning, this will be placed on his board then night before. 

However should there be an unexpected change to the plans; the car has a flat tyre or there unexpected illness and we can’t go shopping as planned, the laminated picture remains on the board but is covered with a transparent ‘X’ to show that the activity is cancelled. 

Dylan has some activities which really excite him. If he knows we are eating out that day or have an activity planned that he enjoys – which usually involves spending money- he will ask for money constantly. 

I mean every single second again and again – ‘Money, twenty pound, change, money, twenty pound, change,’ over and over again with the iPad; as if to stop us forgetting that we have this activity to do later, don’t forget!! 

To avoid Dylan becoming too anxious and repeating like this we often use a ‘now and next’ board.

A ‘now and next’ board uses two pictures of activities, the first is ‘now’ i.e., the washing, cooking, hoovering or whatever boring job it is that we have to complete before the fun stuff, once all the boring jobs have been completed we then move on to ‘next’ – the crisps, the coke, the shopping etc. 

It’s a physical demonstration that we have to do these undesirable things first and then we will do your favourite thing. 

It’s not a bribing tool, but an information giving one to show Dylan that we haven’t forgotten what you want and your requests will be granted shortly.

 It’s an extension of our ability as socially polite people to be able to wait. 

When we took Dylan out of school ‘wait’ was one of our first programmes that we worked on.

 Dylan couldn’t wait, if he saw something he needed or wanted, he took it or did it. He was so impulsive, not naughty – Dylan’s perception was just ‘Why wait? It’s there, I want it, and I’ll take it.’

 We started the wait programme with a target of 3 seconds. 

Dylan would have to sit in front of us with a small M&M in on the table and he was asked to wait until he was told that he could have it. 

Three seconds was the start and every time he tried to take it before being given the go ahead we would have to remove the sweet and start again. 

Learning to wait was so hard and took a long time for Dylan to learn so the ‘now/next’ board is a good everyday extension of this which has a functional use to help Dylan manage his day.

The schedules and planning boards are skills that are heavily adult led at present but we hope over time and with more practice that these will be transferable skills that Dylan can develop to increase his independence. 

Using such schedules can help planning for social activities, employment and learning as well as reducing the anxiety that an unplanned day can create for him.

 #AutismAcceptance