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Cracked but perfect

Dylan’s iPad needed a bit of an overhaul. 

It’s use, albeit is a good thing, has resulted in a seriously cracked screen and a selection of stains and spillage to both the casing and the screen. 

Today I decided to bite the bullet and investigate. The big issue being if the screen itself is cracked Dylan will need a new and costly iPad but the truth is he can’t carry on with this messy looking device. Something had to be done!

Thankfully the screen protector came off in one piece and the iPad screen is perfectly intact. The rest of the casing and machine cleaned up beautifully and looks as good as new.

But this, the cracked damaged iPad screen protector mesmerised me. 

In my eyes it’s not damaged. It’s been the vessel for my boy to gently feel out his words. 

To navigate options. 

To both make errors and correct them. 

His fingers have scoured the length and breadth of this toughened glass to tell me his thoughts and give me the eagerly awaited answers to my questions.

Bizarrely unable to dispose of it, I have gently wrapped it and put it away in storage with Joshs first teeth and Graces first baby blanket.

To me its Dylan’s first voice. 

Cracked but perfect.

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John Doe

There once was a man called John.

John had a fall, in a public place but it was an unwitnessed fall and afterwards he was complaining of pain. When questioned it was deemed that his knee was the site of the injury and he was rushed off to be scanned and assessed. All assessments came back clear from injury so John was discharged to a rehabilitation unit to have therapy on the soft tissues damage he was deemed to have in his knee. 

John continued to exhibit signs of pain – he has limited communication which is acknowledged by the hospital staff. He continues to report the pain in his knee. His mother is with him all the time, deemed a bit of an interfering pain to the hospital staff she continues to pester the staff, unable to rest as she is adamant that her son never complains about pain, he has a high pain threshold, something isn’t right.  Her pleas are ignored. John is encouraged to commence a rehabilitation programme – he is advised to mobilise and cycle as part of his therapy. Often crying and reluctant to comply his mother becomes more and more vocal that something isn’t right. After days of no improvement he is sent for another knee scan, which continues to be normal, he also for some unknown reason has his ankle scanned too, both clear. The therapy continues, more tears, mum becoming more and more bothersome. Niggles about lack of care turn into complaints, an interfering mother, a reluctant complex man who won’t adhere to therapy advice. Reports of food being left out of his reach, unable to get to his drinks, not given his glasses or hearing aids.  Meals missed, therapy being pushed, more tears.

Three weeks later John has another scan. After repeated requests from his mother John has a body scan in light of the constant reports of uncontrollable pain it turns out that John has been cycling on the gym with a fractured pelvis. The break had which had been present since the unwitnessed fall been missed on numerous occasions, this is not acceptable but it happens, there is human error.

What is not acceptable is the disregard for the viewpoints and concerns of John’s mother, her repeated voicing of the fact that John was demonstrating signs of severe distress and in her exposing this sign of his condition the attitude that then developed towards both John and his mother is inexplicable. 

John is in his 50s, his mother in her 70s. John has a known learning difficulty and various disabilities. None of these were taken into consideration when his responses to pain were assessed. The person best to interpret his behaviours, his mother, was deemed a pest. Almost unacceptable that she would remain with him all day and was most likely repeatedly told 

‘Go home and get some rest, we’re looking after him’

Is it any wonder that as parents we don’t leave, we don’t stop watching, checking, researching. It’s exhausting but it’s all we can do to try and keep our loved ones safe. Even in a place of care with highly trained and very experienced professionals, no one listened to John or his mother. John was failed. Over and over again.

I do not know John, I’ve never met him but I know he exists and I know his story is true and it scares the life out of me and fills me with fear for Dylan.

One cruel lesson that I am being reminded of on a daily basis. 

Trust no one.

Image from sectioneduk.wordpress.com

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The Colonel delivers

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

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

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

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

‘Next please’

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

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

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

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

Liam looks blankly at him.

‘So is popcorn chicken okay?’

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

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

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

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

‘Is that large or small?

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

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

Not today.

Today I’m tired.

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

No.

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

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

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

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

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

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

‘Would you like large or small?’

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

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

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

I approached Liam for my order.

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

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

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

I nod and smile in agreement.

Yes Liam, he did.

#SeeMeSeeMyAac

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Leading paths and crossing roads 

Success is where preparation and opportunity meet.” Bobby Unser

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

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

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

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

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

‘Can we go now?’ 

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

‘Non’. 

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

‘yah’.  

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

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

‘Non!’

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

‘Non, non, non,’ 

(lights change) 

‘YAH!’  

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

‘ YAH!’

And we’re off!

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One year.

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

I’m so glad I did. 

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

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

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

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

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When lessening financial cost increases personal cost 

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

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

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

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

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

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

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Cracking yolks 

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

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

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

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

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

‘ Scrambled egg’ Dylan repeats again and again

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

Josh looks up from the telly briefly. 

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

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

Oh yeah, he was telling a joke. 

He’s not done that before.

Eggs-ellent