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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

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​April is autism awareness month: Day 27- Pain and illness

April is autism awareness month 

Day 27: Pain and illness

Dylan’s not able to communicate and his sensory differences mean that he doesn’t react to pain and sensitivity in a typical way. 

For example Dylan will strain a cough instead of saying ow or crying when he hurts or bangs himself, he won’t rub his sore hand or knee but instead grab his face adding even more confusion to location of the injury. 

He never comes to us for comfort or to show us what he has done. He very rarely cries due to pain, only frustration.

Before Dylan vomits he will cough intermittently for a few minutes. The cough is different, but only subtly. It’s a cough that we immediately notice as being a sickly one although to the unfamiliar ear it will just sound like a cough. Then he will be sick. 

When being sick Dylan won’t go to the toilet or vomit in a receptacle but will remain where he is and vomit all over himself. If it is night time and he is in the bed he will lay and vomit on himself, this really worries me due to the risk of him choking or aspirating.

A headache, tummy ache, all the internal aches and pain which can give an idea of further illness are impossible to recognise. In Dylan’s whole life we have not been able to identify a time when he has had stomach ache or a headache. 

He simply has not been able to tell us and although we are pretty fine-tuned in Dylan’s non-verbal communication there has been no outward signs that he has been in discomfort. 

Even before the worst sickness and diarrhoea he will eat a full meal and then just bring it back up fully a couple of hours later. I don’t know if he feels ill but is unable to recognise that feeling and that eating will make it worse? 

Or does he eat because he feels he has to where we encourage him to eat his dinner? We will naturally encourage him to eat his meal, if he feels unwell and eats more as an act of compliance; that’s an awful thought but a totally plausible one.😣

God forbid if there was something serious going on for Dylan, a headache, ongoing pain, even something as simple as constipation which left unrecognised could be catastrophic; it’s a constant guessing game and requires ongoing detective work.

Thankfully we’ve only had one trip to hospital.

 Dylan woke up one morning, came downstairs and was dragging one leg behind him unable to weight bear on it. Seemed he just woke up like it. 

He was able to move the limb fully but unable to weight bear. It was bizarre, he couldn’t tell us what happened, neither did he seem bothered for us to know, he just wanted his breakfast.

 After he had eaten but still not able to walk properly we had no choice but to take him to the hospital to check if something serious had happened. 

The doctor in childrens A&E spoke directly to Dylan. He didn’t even look at her. I had to explain that Dylan is unable to communicate what has happened; I don’t have any recent history to be able to tell her what may have happened. 

Dylan had an x-ray and thankfully all was well, it was a suspected soft tissue injury that Dylan had sustained by maybe walking at a funny angle getting out of bed and then jarring his knee. He was skipping around again by lunchtime, but things could have been different for us depending on the approach from the doctor – how suspicious does it look that a child gets taken to hospital with a potential injury and there is no history? No one has any idea what happened. Dylan’s unable to explain what’s happened to him or what hurts. It’s an uncomfortable situation to try and explain and there’s a constant fear of appearing like a neglectful or abusive parent in these situations. He’s so vulnerable, it’s really worrying.

It is a plan to try and teach Dylan how to explain how he is feeling but it’s about teaching it in the moment. It feels a bit mean when he hurts himself to immediately grab his iPad to be able to give him the words to explain to him what has happened but it’s the only way to teach something as subjective as feelings. 

We have done this with happy, sad and angry as emotions and generalise these feelings with Dylan labelling pictures of people with tears or smiles to demonstrate his understanding that others can feel the same emotions as him also.

 It’s a very basic way of looking at things but whereas Dylans emotions tend to come naturally to him, it’s the interpretation of them which can be confusing. 

With injuries and sickness I’m not sure how appropriate it is to show pictures of such situations – the only thing we can do is describe it in real time as and when it happens-

 Thankfully it’s not that often!

#AutismAcceptance

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​April is autism awareness month: Day 26 – Employment 

April is autism awareness month

Day 26: Employment 
‘1 in 68 children have been identified with autism spectrum disorder’, 

‘Four times as many boys as girls are diagnosed with autism’. 

There are so many autism awareness videos about children being overwhelmed by sensory situations. Therapies are play based or use childrens toys to demonstrate play or learning and development. 

It seems that the language around autism is always directed towards descibing children, but the reality is that these children quickly grow into adults with autism. 

Adults with both varying needs and support requirments.

Everyone has the right to work, to free choice of employment, to favourable conditions of work and to protection against unemployment. In the current climate it is imperative to work and earn money. Increasing living costs and more stringent ,often unfair, cuts to state benefits results in the ability to work being a real necessity for survival. 

In addition to this, to work and generate one’s own income is positive on psychological wellbeing and nurtures a sense of integrity. A positive supportive workforce can see a colleague through the darkest of times and can often be a family away from family; the work family. 

Sadly statistics report that only 16% of autistic adults in the UK are in full-time paid employment, and only 32% are in some kind of paid work. Despite increasing awareness of autism in recent years this statistic remains unchanged since 2007.

With these statistics in mind we are considering future employment options for Dylan. Although at present it would be difficult to imagine him to have the sustenance to be able to work a full working week or to find a suitable role for him, even on a very part time basis. 

But as with everything that we have learnt so far from Dylan, planning and forward thinking is key. 

As a potential employee Dylan has a methodical eye; He likes things ‘just so’. He is very keen and motivated by food and he is a visual learner. 

But these skills may well be lost on an employer who is expecting a pleasing smile and small talk at an interview. The social niceties that are deemed essential for interview etiquette do not come naturally to those with autism. 

It is important the as society we start to think outside of the box and raise awareness of the skills and potential of autistic people and encourage employers to take on autistic employees regardless of initial interview impressions. 

It’s about time that employers began seeing the ‘disabilities’ as abilities, for example the productivity of people who are motivated to work and not sit around chatting. The visual and mathematical abilities and precision to details can make some people with autism very productive and efficient members of the work place. 

It’s not unusual for people with autism to have avid interests, some of these are functional – others not so. In ‘neurotypical’ people, or those without autism, interests are considered ‘normal’ and are usually functional. However, the interests of people with autism may not be considered functional and so are often referred to as obsessions. 

I’m not a fan of referring to interests as obsessions; it makes it sound weird when the reality is that the interest can be used functionally in one way or another. There have been reports in the media of people with Asperger’s proficiently computer hacking, accessing top security international information, deemed highly illegal and they get into a lot of trouble but why are these skills not being snapped up by huge computer corporations or security organisations? 

Another example is the lining up of items; this typical ritual of lining up items in rows gives a sense of order and calm to people with autism when the world feels oh so hectic and confusing. Employers could utilise these skills for adults with autism to work in shop displays, ensuring merchandise is presentable and appealing to the shopper. 

It’s not rocket science but more about seeing past the behaviour and the social difficulty to allow a motivated worker with autism into the workplace.  

If this was a reality then autistic people’s lives would be improved by the reward of paid employment, increased independence and confidence. Taxpayers would be saved the cost of out-of-work benefit payments. Employers would gain from the skills and commitment of autistic employees. 

Employment support services have a crucial role to play in helping people to gain skills and consider work options, but also in building confidence by highlighting people’s existing strengths and capabilities. It requires a shift in social perceptions but if successful, the potential is endless and everyone’s a winner.


#AutismAcceptance

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​April is autism awareness month: Day 25 – Diagnosis

April is autism awareness month

Day 25 – Diagnosis

On April 25th 2007 Mark, Dylan and myself attended a local children’s centre and completed  an assessment where Dylan was officially diagnosed with autism. That was ten years ago today. 

I’m not sure how I feel about that really; maybe a bit overwhelmed. 

Ten years is a long time.

Prior to April 25th 2007 Mark and I were on very different paths as parents and held very different beliefs about Dylan and his development. We were both concerned, primarily his lack of speech, but we both responded to this in different ways and invariably had differing coping methods.

I have always been very proactive; When I’m concerned I research, I read, I leave no stone unturned no matter how upsetting the information gained or difficult the lesson learned. 

I thrive on knowledge and believe that information is power. If a person has enough information then they can make informed choices and there will be an opportunity for a reasonable decision to be made, even in the worst of situations. 

‘Why wasn’t Dylan growing and developing like he should in the tens of books I had read on pregnancy and child development?’ 

‘What are these phrases that I am hearing thrown into conversations with professionals?’ 

I Googled everything.

Mark is the exact opposite;

 ‘why worry about things that haven’t happened yet?’ 

A self-preserving mentality; 

‘why waste time and energy searching for information when you don’t even know what your options are? Dylan is Dylan, he’s happy. He will be fine. He’ll start talking. Stop worrying.’

I don’t remember what the weather was like on the morning of 25th April 2007, I wish I did. 

I don’t remember what I wore or any of the details of the journey to the clinic or the finer mundane details of that morning. I wish there was something about that day that I could remember other than the feeling of intense nausea in the pit of my stomach. 

We arrived at the clinic and were met by a play worker who knew Dylan from frequent home visits in the preceding months. She took Dylan off for a play and Mark and I spoke to the doctor with Dylan’s nursey teacher present.

 Same old questions, how was his birth, any pregnancy problems, Apgar scores, when did he sit up, when did he walk, question after question…. Did they not read his ever growing bundle of health notes? 

It took half hour to answer all the paediatricians’ questions before Mark and I were sent out for a walk so the panel could discuss their findings and come up with Dylan’s score. 

A twenty minute interval felt like an eternity. Mark and I both stifled by the awkwardness of the situation as if we were on a dodgy first date. Both making small talk and feeble jokes as if we had just met, however our subject matter was our mutual children or household bills. 

Dylan happily amused himself with some food matter that we had brought with us as a pacifier, unaffected apparently by the distinct uneasiness in the air.

On returning to the clinic the paediatrician wasted no time in confirming that Dylan’s score resulted in him being labelled as being on the autistic spectrum. 

She was not making any plans to see Dylan’s again but would be happy for him to be referred back to her. I remember asking her what we may need to refer back to her for, she didn’t really answer me. 

I don’t really remember what else was said; Mark and I were assured that Dylan’s would be found an appropriate school and that we were to trust the professionals. We were told that Dylan would have a special needs health visitor. Oh and for us to go and have a good day. 

It felt very blasé. 

That’s it; before we knew it Mark and I found ourselves in the car pack walking back to the car in a daze. We went home and got on with dinner, washing, nothing really, life plodded on just it was hazy. And numb, totally numb.

Mark and I were both alone and isolated ourselves in our own self-consuming worry and concern. We were only united in our grief and our fear, not with Dylan but with just being left with a label, a word. Our beloved child had been made to feel alien with this label, a disability stuck on him by a total stranger. 

I’ve never felt so helpless. 

Ten years ago there was no Facebook. The internet was very basic. My only known experience of autism was Rain Man with Dustin Hoffman. 

I was totally, totally out of my depth and very alone.

So I began to research. It was shortly after Dylans diagnosis that I found ABA but was deterred from this by the health visitors and teachers who told me it was no good; we should follow traditional schooling pathways that have heavier research. 

Since Dylan’s diagnosis we have tried homeopathy, gluten free and casin free diets, we have used PECS and Makaton to encourage speech. We have used The Listening Programme which involves listening to short piece of music through specially adapted (and bloody expensive!!) headphones for 10 minutes a day, every day for six months. We have tried various types of occupational therapy from environmentally based techniques to hands on desensitisation programmes. 

Some of these have helped Dylan, others have done nothing. 

For years I searched for a cure, a way to make him better. I realise now that this was wrong,

 Dylan isn’t broken nor does he need fixing. 

I think if this was explained at diagnosis and we were assured that things would be okay I would not have searched so desperately for answers to make things better. 

Looking back it’s taken me a long time to reach where I am now.

I know now that nothing changed at 11am on 25th April 2007. Dylan’s diagnosis changed nothing. Dylan was Dylan before and he remained the same afterwards. His diagnosis is just an explanation for his behaviours, his perceived lack of interest in us. 

Although there were no answers to how we could help him with his behaviours, his diagnosis provided the reason why they were there. 

A diagnosis of autism does not define who a person is but can provide an explanation for some of their behaviours and identify some potential difficulties that they may have. It should provide allowances and understanding, and this starts with the parents. 

If I could go back ten years and sit with myself on the evening of 25th April 2007, when the bath time was finished and the distractions of the children had all settled, I would gently place an arm around my sobbing shoulders, sit quietly and just assure myself that it will all be okay, Dylan will be okay and as a family we will be okay. 

We will adjust to the added dimension to our lives that the diagnosis of autism brings with it.

 We will grow together and succeed. 

Mark and I will be different parents from how we had planned but parents who compliment each other with our varying coping techniques and provide a strong loving basis for all of our children to thrive. 

Dylan’s diagnosis was not the end. 

It was beginning.

💙

#AutismAcceptance 

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​April is autism awareness month: Day 24- Sleep

April is autism awareness month 

Day 24:  Sleep

Research has estimated that between 40% to 80% of children and young adults with autism have trouble sleeping. 

The answer to this is likely to be different for every person. 

As a baby Dylan willingly gave up his daytime nap at 2 years old. He didn’t seem to miss them at all, unlike us, we were gutted! 

By this age Dylan was also not settling at night. We would spend hours after a very quiet and relaxing bedtime routine lying on his bedroom floor to prevent him getting out of bed and running up and down the hall. He would often still be awake at 10pm, not being naughty; just unable to switch off. 

This progressed after Josh was born and then also when Grace came along. Dylan now aged 3 would still be up at midnight and would wake throughout the night. The lucky thing was we were up with Josh and Grace as babies anyway; for a long time this masked the additional needs that Dylan had throughout the night.

Sleep problems can be divided into four main categories:

1- Settling problems or difficulty going to sleep

At night-time Dylan will lie in bed singing and giggling to himself. Sometimes softly humming, sometimes shrieking and cackling to himself.

 Bed is generally a happy place for him; he rarely cries or becomes upset at being on his own. In fact during the day he will take himself off to his room for a hum and a giggle, away from the bustle of daytime life. Sometimes these noises can be very loud though. 

As an example, when we were away on holiday a few years ago the chatty couple in the apartment opposite approached us at breakfast one morning – they were very concerned at the local wildlife being so close to the hotel complex, telling us that they could hear a wolf howling into the early hours of the morning. They were so concerned and very surprised that we hadn’t heard it as it was so loud! It was only a few minutes later that they heard Dylan happily  howling at the breakfast table that they then realised that their local ‘wolf’ was Dylan. The couple only said hello once or twice to us after that.  

Mark and I were horrified and embarrassed at the time (it was quite early in our autism journey) – now we find it hilarious. 

These days Dylan will settle between midnight and 2am. He is quieter than he used to be. We have to gently shush him if he becomes too noisy, if we loudly SHUSH him he will echo this loudly back to us over and over again; Almost arguing with our request for a bit of quiet. However one little sshhhush and he often will quiet down a bit. 

2- Waking problems, or waking repeatedly during the night

Once asleep Dylan will often wake in the night, I don’t wake before him but hear him once he has stirred, I’m not sure if he gets up for the toilet and struggles to settle back down or if he has had enough sleep and wants to wake now. This can happen from about 5am onwards.

 Thankfully with the onset of puberty Dylan is  getting up a bit later with him sometimes needing a lot of coercion even to get up at 8am, but the very late bedtimes remains.

When Dylan is awake in the night he needs supervision as he does on the day. Not appearing to realise or mind that the house is asleep he will get up and play some music or when he was younger one of his favourite things to do in the night was to get up and run the taps in the bathroom, or stand silently next to us like a possessed child in a scary film – it’s not clear why but it explains why I feel like I often sleep with one eye open! 

3- ‘Social cueing’ problems, not making the connection between the family going to bed and the need to sleep

Dylan has a very established bedtime routine, hot chocolate, long soak in the bath, pyjamas, bed, snuggle time, everybody sleep. He enjoys his bedtime routine but just doesn’t get the snuggle down bit 

4- sensory issues

“Sleep was not a secure place. Sleep was a place where darkness ate you alive. Sleep was a place without colour or light. In the darkness you could not see your reflection. You couldn’t get ‘lost’ in sleep. Sleep just came and stole you beyond your control. Anything that robbed me of total control was no friend of mine.”

Somebody somewhere, Donna Williams

It is highly probable that sensory needs impinge on Dylan’s ability to settle and get himself back to sleep after waking in the night. 

The constant noise and flicking of his beloved drinking straw fills the darkness of his room. In the past we have tried lamps, settling down music on low, white noise, windows open, windows closed, weighted blankets, wedged pillows. None of it worked. Dylan just has to burn himself out to exhaustion almost before he can sleep. As long as we can keep him safe and reasonably quiet so as not to disturb Josh and Grace he’ll get there.

Medications have been suggested by professionals to aid Dylan’s sleep, particularly when his night time shenanigans were affecting Josh and Graces sleeping patterns. 

We have strongly resisted this. 

Medical interventions can be habit-forming and they don’t treat the root cause of the problem.

Melatonin supplements are only available on prescription in the UK. 

Some foods are rich in melatonin such as rice, sweetcorn and tomatoes, but current research is not clear whether a melatonin-rich diet could be effective in helping children to sleep. 

Dylan eats a bowl full of tomatoes on our Wednesdays out at Pizza Hut; he doesn’t sleep any better those nights so don’t hold much faith in the melatonin diet!

The only time Dylan really sleeps is when he is poorly.

 In fact being non-verbal the only indicator of Dylan ever being unwell is that he will sleep, it’s ironic that sleep being the one thing we crave every night, when it finally comes all we want is Dylan to feel better even though that means he’ll happily be awake all night again – Typical!

#AutismAcceptance 

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​April is autism awareness month: Day 23- Charity

April is autism awareness month 

Day 23 Charity.

Raising a child with additional needs is financially expensive. There’s no getting away from it. Be it the additional laundry costs, equipment, adaptations, loss of earnings, the costs just keep increasing.

Although the day to day running costs are increased there are a number of charities which can help with one off larger items. For example; Family Fund have provided Dylan with his IPad twice. 

This is not greedy or extravagant that Dylan has had 2 iPads, in fact due to their delicate technological nature and Dylan’s sensory seeking rough handling we are currently on our 6th IPad. It’s true that the rate at which we are getting through them has slowed significantly as the years have gone by and Dylan’s matured but that’s still A LOT of technology! 

IPads have paid a large part of Dylan’s development. He naturally picked one up and found it easy to use. He has struggled with puzzles, blocks and other preschool toys but with the IPad he is a natural!

Dylan has a statement of educational need. This is a legal document which means that Dylan’s additional needs to be able to access education have been acknowledged and legally assistance has to be provided to meet this need. 

In real life those professionals assessing the need provide the provision so if they don’t provide it as standard they won’t assess for it. ABA isn’t provided by our local authority so they don’t provide it, no matter how well it works!

ABA isn’t expensive in the grand scale of special education. To put it in proportion, Dylan’s home ABA programme used for his learning costs £8000 a year. That’s for 52 weeks of the year. Dylan’s primary school placement with incurred costs of transport and other overheads cost £15000 for 32 weeks a year that works out to over £24k a year over the full 12 months. The costs would be higher for a secondary placement. Just goes to show ABA isn’t an expensive alternative.

Caudwell Children help Dylan once a year with a grant to go towards his ABA consultancy fees. This means tested assistance is paid directly to Dylan’s consultant who reduces the pressure on us to provide his education AND pay for it fully.

 Last April Mark ran the London Marathon and raised £1600 for Caudwell Children. It was Caudwell Children who gave us the initial funding to get the ABA set up, an outlay which we would never have been able to do without their financial support. 

That was 5 years ago and we have been lucky enough to have their support every year so far. It was important to give something back – Josh ran a 5k run in 2015 and raised £700 for them, last year was Marks turn; both times they added the sponsorship money to Dylan’s account with them to directly pay for his therapy.

In my experience it’s these smaller,  lesser known charities which provide direct help to those with autism and their families. For example everyone knows the National Autistic Society (NAS); a nationwide charity with a handful of specialist independent schools, the NAS is often considered the benchmark for highlighting autism expertise, advice and advocacy across the UK. 

As a family we have had little input from the charity. There was no support throughout the diagnosis process or afterwards despite constant efforts to try and access some. Education advice is minimal and there is no support or information given to parents regarding any therapies or interventions which may assist those living with autism or their families. 

In fact the approach used to describe situations and feeling of those with autism and their families is nothing less than destructive in the efforts of people to try and promote awareness and understanding of people’s differences. 

An example of this is last year’s NAS campaign ‘the twelve days of autistic Christmas’ describing Lucca a young boy with autism, and his family at Christmas time.

“On the first day of Christmas Lyndsey will be sitting with Lucca in his bedroom whilst he has a meltdown – screaming and hiding in his room because he has become so overwhelmed with the noise from his twin brothers excitement when opening their presents.”

What’s the message?

What I hear from their campaign is that Christmas is ruined. Families are suffering. Autism is invading the peaceful holiday season and causing meltdowns and disruption. 😣

“It’s as difficult for the brothers as Christmas is tailored around Lucca to try to prevent a meltdown. The family will have no tree, decorations or lights because of Lucca’s sensory sensitivities. The smell of Christmas is overwhelming for him.”

What’s the message?

Oh no! Those poor siblings, that poor mother. A terrible upsetting Christmas. The anxiety of unknown presents. Inability to cope.😣

“My feelings go on the back burner until Christmas is over then I have a good cry.”

What’s the message?

The message I get from all this is that autism is feared. Autism is unpredictable. It is a disruptive and uncomfortable force. Autism makes Christmas hard, for those diagnosed and thus in turn for everyone else around them. 😣

The quotes above come from the National Autistic Society website. The NAS is the ‘go to’ charity for advice and support for parents and professionals and this is what we are fed; 

Utter crap.

Let me tell you about our Christmas. 

Our family Christmas where autism is understood and integrated instead of being squished into an uncomfortable set of formalities and rituals.

As soon as it hits November, Christmas will already start creeping into our house. Dylan loves the noisy singing Christmas decorations that flap and sing and repeat. 

You know the ones; really loud! 

He will select his favourite for this year and plays it throughout the day. 

He loves the endless food and the constant stream of tea and biscuits whilst snuggling under blankets on the sofa watching Christmas movies.

No he’s not keen on visiting or having people over; so we don’t. 

Dylan doesn’t like the look of some decorations; so we don’t have them all out.

In fact as a family we see Christmas as a time for us all to be together comfortably and Dylan really enjoys that.
‘The Twelve days of Autistic Christmas’ NAS campaign is a slur on the beauty of *our* Christmas.

  This campaign takes advantage of Christmas being a time where we ALL get a bit tired of relatives, of too much food, the decorations and excitement- that feeling we all get but somehow it tries to make it into an AUTISM problem. 

Bearing in mind the NAS website motto is; “Until Everyone Understands” I feel the stance on an autistic Christmas is gloomy, promotes negative judgement and is not offering any understanding to those with autism that find situations difficult around the Christmas festivities.

Christmas should be an opportunity for families to come together, to understand one another and as a leading charity they should be making efforts to facilitate this. 

It is not an opportunity make money from the fear so many have that we somehow can’t manage our children or relatives with autism and so we have to face the prospect of doing so with dread or despair.

The NAS has a prime role in raising awareness of Autism within mainstream communities – it’s such a shame that it is so negative and poorly represented. 

Mark ran his first marathon in 2008 and has raised over £14000 in total in sponsorship for the NAS.  We then became aware of Caudwell Children and other smaller charities who actually give practical advice and assistance to children with autism and their families. 

As a family we are very grateful for autism charities and the help they have given Dylan.

 Where someone wishes to contribute or support an organisation I urge everyone to seek out smaller, more local charities that can benefit those with autism in your local areas. These are often better equipped to make a direct difference to people within autism communities who need support.

#AutismAcceptance 

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​April is autism awareness month: Day 22 -ADLs/ Personal Care

April is autism awareness month 

Day 22 ADLs/ Personal Care

Activities of daily living (ADL) are routine activities that people tend do every day without needing assistance. There are six basic ADLs: eating, bathing, dressing, toileting, transferring or walking and personal care. 

A person’s ability to perform ADLs is important for determining what type of long-term care may be required.

A lot of personal care has been covered in previous awareness posts including haircuts, toileting and bathing. But personal care also covers teeth brushing, washing clothes, shaving, cutting fingernails and toenails and blowing your nose. 

TEETH

I went to a training session in the week about the Mental Capacity Act. There were professionals there talking about young people with learning disabilities being held down by three people so that they could have their teeth brushed. 

My heart sank and my soul wept. 

The thing is, as outrageous as it is that this occurs, once the young person turns 18 it will not be legal to force them to have their teeth brushed in this way. 

Since the teeth brushing process is so negative and traumatic it would be understandable for that young person to never allow a toothbrush pass their lips again. It would not be surprising then in a few years that they would suffer toothache and probably need extractions or further invasive treatment. 

A life time of unpleasant dental treatments or suffer agonising toothache, this is awful and so avoidable.

Dylan’s teeth have always been an obsession of mine. I have been terribly paranoid that he will need a filling or suffer bad teeth. 

Over time we have worked on Dylan being desensitised to having his teeth and mouth touched. Dylan has abnormally strong check muscles and we must keep reminding him to relax them so that we can edge the toothbrush through to properly clean the back of his gums and mouth. 

Dylan has all his adult teeth cut through and his mouth is crowded with teeth now. He could probably use a brace but the dentist doesn’t feel that he would tolerate it. 

Dylan attends the dentist for a check-up himself every 6 months but we stagger everyone else’s visits in the family so that Dylan can come with every one of us to give him as much exposure as possible. 

Dylan will open his mouth for the dentist to look at his teeth but is clearly very anxious and will pant and whimper throughout. He won’t sit on the chair even though she promises him a little ride each time – in fact I think it may be the movement of the chair which worries him. Instead he has his consultation on a small stool in the corner of the office. 

The dentist crouches down and I use the light on my mobile phone to shine into his mouth. 

It’s a team effort but we manage it 😊

There are a range of tooth pastes to help with the compliance of brushing – tasteless, foamless and kiddie training toothpaste with funky flavours. I think Dylan likes the strong taste and smell of normal toothpaste, it goes with his sensory seeking tastes. 

When brushing, we have taught him to spit out the foam at the right force, for a while it would dribble down his chin or be thrust all over the sink and windows. Finally we got the balance right – it’s the little things! 😊

LAUNDRY

Dylan will always put his clothes in the wash at the end of the day. Most of them are dirty but this is a coincidence rather than having had Dylan check them.

 We have plans to break down instructions enough for Dylan to be able to independently set up a load of washing in the machine. He is very confident to unload a washed machine and will proficiently hang the clothes on the line. 

We had an ABA programme to build up enough strength in Dylan’s fingers and to teach him to be able to use clothes pegs. Before he simply couldn’t work them – Now, he’s a whizz!

SHAVING

Shaving is a task that Dylan does not yet require but I’m sure it won’t be far off so we need to prepare for this. Dylan will need to be able to work a razor and work on his mirroring skills with his reflection. Oh, and we are going to have to monitor the use of the shaving foam – Dylan will have a sensory party with all those bubbles!

CUTTING NAILS

Despite being able to use scissors to cut card and paper Dylan can’t cut his fingernails or toenails due to the technical precision required, he is fine having them cut for him though.

 He did have a stage when he was about 8 when he would hate to have his feet touched, at the time we were seeking advice from a sensory Occupational Therapist who advised us on some hands-on techniques and exercises to help relieve Dylan of his sensitivities with his feet. 

Touch wood since then, all’s been well.

BLOWING NOSE

Dylan can blow his nose with prompting but prefers to produce a tic like snorting, throat hacking that dominates day and night.

Prior to the snorting, Dylan had other stimmy behaviours which were less than desirable. I checked the snorting with his paediatrician who felt that it was a tic rather than a physical nasal problem.

I had suspected for months that the nasal snorting was a nervous tic as well as a self-stimulatory behaviour. It’s something which worsens in quiet public situations you certainly don’t want to draw attention. You know the ones; in libraries, school presentation assemblies, the quiet important bits of wedding ceremonies. 😦

But then it occurred to me, maybe it’s not comfortable? Maybe he feels congested. So, what do you do?  YOU GOOGLE!!

Well when Googling I stumbled across nasal douching or ‘saline sniffing’. Basically, it is pouring, dripping or snorting salt water up your nose and then blowing it all out along with whatever is up there. I checked the evidence base and couldn’t find any contraindications or injuries reported. 

Apparently non-infective rhinitis is recognised as improving with regular douching soooo… we gave it a go. 

I’m not usually squeamish but I cannot bear water up my nose so I sat out of this one and Mark kindly gave the demo and modelled to Dylan what he needed to do. Dylan was like a pro and picked up the syringe of warm salty water and whooshed it up his nose. He even made the ‘ahhh’ sound so as he didn’t swallow any. 

He did this for a couple of times a day for a few days and there was a definite improvement. Still snorting but not as violently and certainly not as frequently as before.

For social situations, we’ll definitely continue with encouraging the nose blowing though. 🙂

** Picture is of Dylans only ‘toothfairy’ baby tooth. He has swallowed or disposed off all the other ones when they fell out, never to be found. He brought this to me randomly one evening when it had just fallen out. I was chuffed to bits 🙂 **

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​April is autism awareness month: Day 21 -ADLs/ Transferring/walking

April is autism awareness month 

Day 21 ADLs/ Transferring/walking

Activities of daily living (ADL) are routine activities that people tend do every day without needing assistance. There are six basic ADLs: eating, bathing, dressing, toileting, transferring or walking and personal care. 

A person’s ability to perform ADLs is important for determining what type of long-term care may be required.

Dylan can walk. He skips and quite often he trips, usually over apparently nothing. When he was younger Dylan’s favourite stimulatory behaviour was to run from one end of the lounge to the other. All day. 

Thankfully Dylan’s current stimulatory behaviours aren’t so draughty but he still remains a very physical child. 

He runs and skips all the time. 

It’s as if the motion of the moving keeps him focused, a bit like a hamster on a wheel. When he is required to stop, for example when we are in the shops and we stop for a bit to browse the shelves Dylan will appear tired all of a sudden, almost sitting on the floor in the aisle, unable to stand any longer. As soon as we get moving and the skipping and flitting can continue he’s up and he’s fine.

Although I am incredibly grateful that Dylan is physically well and able his autism brings with it a sinister wandering risk which terrifies me. 

Wandering and drowning is the biggest cause of death in children with autism. It is very common for children to be either drawn to water sources and be unable to swim or maybe it’s the inability to predict the depths of the water but it often ends catastrophically. 

The risk of wandering is a real fear. 

As we are trying to promote Dylan’s independence we are torn by the limits of his understanding of the outside world and the difficulties that others have understanding him.

  To counterbalance this we have a range of strategies in place to try and keep him safe.

 Dylan has a Velcro ID bracelet which has a laminated card within in with his name and our contact details; it looks a bit like a medical bracelet but is waterproof and non-irritant to Dylan so he is happy to keep it on.  

He always has his iPad with him; this has our contact details on and Dylan’s name. If, and only if, it is suggested to him then Dylan will use his IPad to answer questions, it is also preloaded with our address to help Dylan come home to us should he get lost.  

The local police have registered Dylan as a vulnerable person. This means if we report that he is missing there isn’t the usual ‘let sit and see if he’s coming home’ approach. If Dylan goes missing his photo will be instantly circulated via local door knocks or social media and choppers will be out looking for him. Much like searches for missing people with dementia.

This was very easy to organise, the feedback from the police when we arranged this was that the preparation would ultimately make their job easier and get Dylan home quicker should he go missing. 

Just writing this post is making me feel sick – Any child goes missing is awful but Dylan is so, so vulnerable. I cannot imagine where he would go or what he would do. 

So to make this a positive and proactive post….

What do you do if you find Dylan?

Picture this, there’s a young boy, standing alone, looking a bit aimless, flicking his hands and skipping on the spot. 

He’s not with anyone but then he looks old enough to be out on his own. 

It would take a lot for someone to approach him, to ask if he is okay.  But please do. 

Dylan won’t be able to answer, he may even ignore you. 

Please don’t ignore him back. 

He may not make eye contact. If he has an iPad or device with him, ask him to use it. By pressing the home button will show our contact details. 

Check his wrist for an ID bracelet or his shoes for a gps tracker. 

Stay with him. 

Call 101, 

call us, but please,  please don’t leave him. 

The biggest risk to Dylan’s safety when out alone is people turning a blind eye, not wanting to get involved or thinking that someone else will help him. 

What if no-one does?

If you have heard locally that Dylan has gone missing and you kindly help to search for him, don’t call his name, he may hear you but he won’t be able to answer you, in fact a strangers voice shouting out for him may scare him and make him run further away or hide.

Instead buy food, take a burger or pizza out and call for him offering him pizza, this will stop him running away anxiously but could possibly be successful in luring him back to safety.

This has been the hardest post to write.

Thanks for reading x

#AutismAcceptance