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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

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​April is autism awareness month: Day 20 – ADLs/ Toileting

April is autism awareness month 

Day 20: ADLs/ Toileting

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.

Toilet training is one of life’s great milestones and it was one of Dylan achievements that he was fully toilet trained day and night by age 3. Dylan is able to recognise that he needs to go to the toilet and able to hold off until he gets there. 

As with most kids he has always come into the ladies with me and it’s never really been an issue. However now he is getting older going to the toilet alone is becoming a reality and a worrying one at that. 

I didn’t realise until recently that there is a whole etiquette of male toilet manners. There is a rule of which urinal to stand at. 

If there is someone already standing at the urinal then there is an unwritten social rule that you don’t stand next to them. 

That’s a no-no.

 Also you don’t look anywhere other than straight forward, you don’t look at the person next to you, either at their face or anywhere else.

Another no-no. 

It is not acceptable to pull your trousers down at the urinal but to expose as little as possible to pass water.

Bare bottoms at the urinal is a big no-no.

The rules are complex and confusing, even more so to a young autistic male like Dylan. These are not social rules that you would like to misinterpret or get wrong. 

Toilets are sensitive and vulnerable places.

However having frequented many a ladies toilets whilst growing up, Dylan is much more comfortable sitting on the toilet within the cubical. 

He still needs supervision with this as he can find the lack of space and coordination difficult and will hold onto the toilet whilst he sits; we strongly discourage this due to the cleanliness of most public toilets (Although Dad assures me that the cleanliness is considerably reduced in male toilets which pose even more of a hygiene risk.)

Dylan has purchased a radar key which can be used universally to unlock the doors in Disabled toilets. 

These toilets have more room and generally are well maintained. The only thing that we need to be aware of is the automatic hand dryer. Although these are hygienic due to the no touch technology, they are often too sensitive for a clumsy boy rushing to get to the toilet. Should he brush past it too closely and set it off absolute terror follows. 

Due to past experimce Dylan is painfully aware of how unpredictable these driers can be and a great deal of his independence is hampered by his need for reassurance whilst in the presence of hand dryers. 

I think it may be the pitch or volume of the noise, exacerbated by the wall and floor tiles within public toilets causing the sound to be intensified to a level where it appears that Dylan is frightened of the noise and it causes him intense discomfort. 

This sound coupled with the unpredictability of it starting, be it from an oversensitive sensor or the other people in the toilets who are drying their hands. Dylan has no control over the noise so we often wear ear defenders when going to the toilet in a public place. 

Although Dylan can still hear with these on any sound is dampened out enough for him not to feel so anxious.

All benefits assessments or health assessments will always ask questions such as; ‘is Dylan toilet trained?’ 

Looking positively on Dylan’s abilities and answering the question basically then – yes, Dylan doesn’t wear nappies anymore. 

However he does require supervision to clean himself afterwards, he needs assistance and support to follow social guidelines, constant reassurance because of the sensory overload and his coordination difficulties and then support to redress suitably afterwards. 

Continence and toileting is so much more than being out of nappies and going to the toilet.

** picture is of a request I made to Dylan to “put a new toilet roll on the holder please.” 

A picture speaks a thousand words. **

#AutismAcceptance 

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​April is autism awareness month: Day 19 – ADLs/ dressing,

April is autism awareness month

Day 19 ADLs/ dressing,

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.

When I first learnt about sensory issues I was told to cut the labels out of clothes to prevent them scratching and to turn Dylan’s socks inside out to avoid the hem irritating his toes. 

The truth is that Dylan has never been bothered by hems or labels; this professional advice was a total waste of time, in fact if the amount of adjustments I needed to make was just snipping a few labels then life would be much more straightforward!

Looking reflectively at Dylan’s journey with dressing it’s only when you try to describe a situation that you realise the huge adjustments that are made over time to allow progress. Due to a combination of his sensory needs and fine motor skill difficulties skills such as doing and undoing buttons are consistently problematic.

 Dylan will only do buttons up when sat down and instructed to do so with maybe one or two examples completed for him. He needs support to ensure that the buttons and holes are lined up before he starts. If he misjudges this and needs to restart the task he quickly becomes distressed and overwhelmed at the anxiety that the restarting causes. 

To Dylan the task was to do the buttons up, no one mentioned about lining up the correct button and holes and now he’s having to do it again???!! WHY???! 

The frustration at being incorrect and anxiety at having expectations being inconsistently given to him quickly escalates with him grabbing and pulling at his face, bruising himself as a punishment. 

When it comes to removing the fastened item of clothing at the end of the day Dylan either forgets to reverse the process or simply can’t be bothered with the faff of it all and will often rip open the shirts Hulk Hogan style. 💪💪

To avoid issues with fasteners we often plump for over the head type t-shirts or sweatshirts, if they have a hood then that’s even better as they can provide the sensory feedback of Dylan having his head covered.

Clothes are often back to front or inside out which doesn’t seem to bother Dylan. This has to be carefully pointed out and then a change around is gently suggested – rather than instructed – to avoid the aforementioned self-blame and anxiety. 

It’s not unusual for Dylan to come out in the 30 degree heat whilst on holiday in a thick sweatshirt or go out in the rain with a pair of crocs on. Dylan doesn’t have the ability to plan what to wear in relation to the weather. He knows to wear trunks for swimming and will often go to bed in them on holiday in case there’s a chance of a surprise dip in the pool but otherwise the comfort and environmental resilience is not relevant to Dylan when putting clothes on.

There’s a wide variety of techniques we have adopted to promote independence whilst maintaining a level of decency. 

Dylan will often forget to dress in any order so if he puts trousers on before his underwear then he will just go without them, a quick check is necessary to ensure that all clothing is present and in correct order. 

Shoe laces are currently a no-no; we are working on teaching this skill but it is a complex one to remember and coordinate for. When outdoors I often have to reach down and tie Dylan’s laces for him as they have come undone, this can generate some suspicious looks from passers by. Velcro is popular choice for ease but we do need to address the lacing skills in the meantime as a longer term plan.

Shoes are a clothes item that we get through a lot of, with Dylan’s skipping around he loses the tread unevenly on his shoes and they often wear bare in places. 

Shoe shopping has the usual pleasures for Dylan which is the same for most children; lots of waiting around, the uncomfortable measuring – usually by sales assistants who look as if they couldn’t care less about shoes or how they fit let alone the child they are attached to but maybe that’s me? 

Dylan cannot communicate to let us know if his shoes are too small or uncomfortable and there are no additional methods or support tools within shoes shops to support this difficult but important transaction which allows us to have comfortable shoes. 

Quite often it’s a guessing game or we check Dylan’s feet regularly for pink or sore areas to try and identify any ill-fitting shoes.

Looking forward, another area that we need to work on is for Dylan to be independent with clothes shopping for himself. We need to teach Dylan how to choose clothes, to develop his sense of self where he finds clothes that he likes or prefers and he would like to wear. 

Dylan knows that he is thirteen years old but does not easily link this to the labelling of clothes. When selecting clothes in a shop – which he will only do when asked to – he will often pick out a baby’s t shirt or younger child’s item. 

I don’t know if this is because of the more attractive patterns on the clothes, if it’s because they are often at the front of the rail when clothes are on display or if he is just humouring me when I ask him to select himself an item of clothing. 

Clothes don’t seem to be important for him at present as a fashion statement; they are merely bits of material that he has to put on before he is allowed to go out. 

To go out somewhere important….

Like to the shops, to buy crisps. 

After all eating crisps is much more motivating than getting dressed.

😂💙

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​April is autism awareness month: Day 18 -ADLs/ Bathing

April is autism awareness month. 

Day 18 ADLs/ Bathing

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.

Thankfully, now a teenager, Dylan is not averse to bathing. In fact he is drawn to water and will spend many many hours in the bath. His enthusiasm does still require supervision however. 

Hot water poses a real scald risk; with Dylan’s sensory differences he doesn’t seem to notice heat until it is too late and he feels burnt, even then he will go back and touch the heat again, almost to check. 

An example of Dylan’s vulnerability around hot water happened yesterday when Dylan wanted to wash up some plates after dinner. With his enjoyment around water I supervised the first item being washed and then left him to complete the remaining couple of items. Dylan enjoys the bubbles and will play for a long time with the soapy suds. So I wasn’t concerned when he came to find me 5-10 minutes later. However his hands were so bright pink and hot to touch that I went to check the temperature of his washing up water. It turns out that he had put the tap on to rinse the bubbles off but when the water got too hot he didn’t think to turn it off or to put the cold tap on. 

Thankfully after three minutes of running his hot hands under a cold tap to cool them there was no harm done but it demonstrates perfectly the difficulty in generalising skills. 

Looking reflectively at what happened I realise that us having recently moved home that the taps here in the new house are different. Previously we had mixer taps throughout and Dylan now needs to be shown how to mix the correct temperature with the separate taps.

Bathing is one of Dylan’s joys and he will spend many an hour in the tub just about any time of day.  He likes a full bath so he can full submerge himself  in water, plunging himself under and holding his breath until the last minute before whooshing up out, gasping for air while chuckling and screeching with pleasure. 

It makes my stomach turn, all he has to do is misjudge his grip on the side of the bath or slip his foot slightly and he will not be out of the water in time before taking in a big lungful of bathwater. 

Needless to say that bath time is not unsupervised, not even at 13 years old, his lack of privacy is a necessity to keeping him safe. Not that Dylan minds, he is oblivious to any company, consumed by his enjoyment of the bath.

Dylan will use a whole bottle of shampoo making endless lather and often requires assistance to rinse his hair free from the thick slick of never-ending bubbles. Without help Dylan will always get out of the bath with suds in his hair which if he isn’t led back and rinsed properly will result in a big itchy knotty mess once dry.

The supervision continues when getting out of the bath, due to the excitement of the activity the floor will be flooded and slipping is another risk. 

For Dylan there are no careful steps out the bath but more excited leaps, despite the fitting of handrails Dylan will happily attempt to leap out of the bath and so risk slipping or injuring himself. He needs constant verbal reminders to get out carefully and watch where he is going.

 We have tried using pictures as prompts to increase independence but this has proved unsuccessful, Dylan is simply too excited to take heed of the written warnings; verbal support is much more effective!

Drying post bath is another area requiring extra support. Dylan struggles to coordinate the towel to dry himself effectively and so needs reminders and often physical support to be able to manipulate the towel to be able to dry himself. 

Despite the whole bathing activity being motivating and enjoyable there is still so many different areas which require support, and that may require long term support to ensure that Dylan remains safe. 

That’s fine – we just need to work on getting him practiced at tidying up his mess afterwards! 

 🐳🛀🌊

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​April is autism awareness month:  Day 17 – ADLs/Eating

April is autism awareness month 

Day 17: ADLs/Eating

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.

I have already touched on in previous posts about the difficulties with shops and making food purchases. Although a great deal of effort and work has gone into developing these skills we are still a long way off of Dylan being independently able to shop for and feed himself.

Dylan is now able to use a knife and fork but he lacks the physical strength, coordination and I think sometimes, confidence to be able to use his knife to cut up tougher foods such as bacon or meats. At 13 he still at times needs his food to be cut up for him.

Dylan is unable to prepare foods for himself. He cannot safely use a cooker, the risk of heat and fire is currently lost on Dylan. When Dylan burns himself on a hot radiator he goes and sticks his hand straight back on it- almost to check its hot. Not sure if this is sensory seeking, he hasn’t quite correlated the heat to the item or if he simply likes it. Either way his lack of awareness is worryingly dangerous. The risks of gas, using sharp knives and an array of other items makes even making a sandwich a hazardous activity. 

To develop these skills we are looking at basic microwave meals to generalise skills. It’s an exciting time, albeit a bit out of our comfort zone but it seems that with every step forward there’s a splurge of dangers and unpredictability.

For example – Microwave meals, a fantastic concept in the future that Dylan can go to the shop, buy himself some microwave meals and then come home and feed himself; that would be marvellous and will make him self-sufficient for a couple of hours!

The plan is to get Dylan being as independent as possible, not a difficult one you may think.

 However within the first 5 minutes of unpacking the ready meals there are a range of dangers which we realise all need to be managed or will require extra teaching programmes.

Firstly, pricking the plastic lids. Dylan doesn’t have the coordination to force his physical strength on the fork through the plastic lid despite trying but failing, he then defaults to picking up a rather large serrated knife to try with– ‘No no no Dylan!’ 😨

REALITY – We need to work on either directing more force on the fork or persevering with the wimpy pricking of the plastic until success. Otherwise he will lose focus and require adult intervention to continue with the meal prep thus reducing his independence.

Next task is reading the instructions – when planning this it was described as Dylan will see the number of minutes on the back of the packet and setting the microwave accordingly.

REALITY –  On the sleeve of a meal there is oodles of instructions, ingredients, descriptions and options often to either microwave or oven cook – Can you imagine mistakenly microwaving a ping meal for 25 minutes??! It’d be dust and a massive fire hazard! 😨

So again this will need teaching – how to pick out the minutes required, how to identify if the item is to be microwaved or oven cooked and if so then on what setting.

Then we come to the microwave itself, Dylan has no electrical safety. He, as far as I am aware, does not know about the dangers of mixing metal and microwaves.

REALITY – The health and safety risks are huge and if he is to be fully independent then he needs to be taught about electricity, the dangers and how to deal with them.

All being well, the microwave pings and the food comes out; boiling hot food. Dylan needs to coordinate handling the hot container with a tea towel and bring it over to the plate. He needs to carefully remove the plastic wrapper – which is not an easy feat at best- and avoid being burnt by the escaping steam. 

Food and plate and go eat. Done. Simples! 😀

In addition to this, even if he does everything right but by some unfortunate circumstance the fuse blows, there is a mechanical malfunction, the food catches alight or the food comes out uncooked; What does Dylan do? We will have to teach to cover every eventuality.

The road ahead is long, exciting but long. 

#AutismAcceptance