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Around the dinner table today I broached the subject of the impending EHCP which has been on my mind since last week. My concerns – mostly directed at Dad, were the choices, the battles it could potentially develop and the expectations that we as parents would have to look at a forward thinking plans for Dylan regarding the next couple of years.

The truth is that as a couple a large aspect of our survival in our journey with Dylans autism is that we only look a few months ahead at a time. The future always feels so uncertain, so unpredictable that we simply don’t know what to expect.

Our path with Dylan has been so different to that of Josh and Grace that his journey doesn’t lag behind the younger two as it has previously, but we have veered to a totally different route; one which is absolutely fine but definitely needs its own sensitive considerations.

Dylan’s alternative route and progress has also superseded those expectations of professionals who claimed to know autism and the blinkered paths of children who live with it; they had Dylan’s path all mapped out and this is now not his current destination.

 After mulling it over for a few minutes Dad and I agreed that longer term goal would be for Dylan to access paid employment, however it feels like a large feat and a long, long terrifying way off.

Another big element of the EHCP is acknowledging Dylan’s wishes. So we asked him;

‘Dylan if you were to work when you get older, where would you like to work?’

Clear as a bell

‘Donnnal’

‘McDonalds? Okay, doing what? Cooking or cleaning tables?’

‘Weeween ahalla’

‘To clean the tables?’

‘Yah bee’

 

Year 9 career talk over.

Wasn’t so bad  🙂

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To speak or to communicate?

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This is the question.

 

Dylan has made progress in leaps and bound in recent weeks. He’s growing in confidence with him making greater efforts to speak at a good audible volume and direct his vocalisations towards those he is communicating with. Great news however this development has highlighted just how incomprehensible his speech is.

So what do we do, encourage him to try verbally to speak and then redirect him to the pad in the hope the practice will improve his articulation with the iPad giving and understandable version of the request or statement?

The only issue with this is with the wider world. The problem is that the public that Dylan speaks to who don’t understand him don’t know to redirect him to his iPad. He is relying heavily on us to prompt the use of the iPad at the moment.

It feels unclear as to whether by ensuring that Dylan not understood will prompt him to independently use the iPad or whether it will make him feel excluded and misunderstood or not listened to. He is still emotionally so fragile that the rejection of people ignoring his emerging speech due to not understanding it could be so detrimental to his psychological wellbeing. He’s trying so hard and I fear that even my ‘Sorry Dylan, I don’t understand. Can you use your iPad?’ is making him feel bad or damaging his developing desire to communicate.

Or do we cut out all speech verbally and use the iPad full time as the only acceptable way to make needs known. It feels like were giving up on the verbal speech which is fine is it means it’s okay for Dylan but that is a hard judgement to make on his behalf.

Scrap that. Giving up on speech isn’t fine. 

Dylans trying so hard.

Over and over again repeating the same jumbled sounding phonics to try and help us piece together the words he is trying to say.

He looks deep at us, almost trying to mentally fling the words in our direction where his mouth is failing him.

Never angry or blaming. Just trying again and again.

I admire his calm determination. To be so calm when the situation must be so frustrating is commendable and would escape many.  

We can’t give up on speech,  we just can’t. There must be a way to manage speech and communication together to ensure that it is effective.

 

 

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1am 

It’s 1 am. 

Today I’ve had a full day at work. 

Tomorrow I also have a full day at work.

Tomorrow, or later today depending on how you look at it, I will have to be awake and functioning and may have to make some really important decisions.

But for now I am lying in bed, wide awake while the rest of the house sleeps apart from Dylan; who is loudly humming and cackling away to himself. 

That dear boy.

Please go to sleep.


Pretty please?

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Tribunal, statements and now EHCP

Tribunal day was 18th January 2013. Fast forward 4 years after losing it but Dylan and his progress is still going strong. 

I received a call from the County Council today to start the ball rolling for Dylan to transfer to a EHCP. The EHCP -Education, Health and Care Plan- has been brought in nationally within the UK to replace the previously used ‘statement of special educational needs.’ 
We maintain Dylans statement of SEN as a warped safety net for if Dad and I are no longer able to continue ABA or home ed.
 There is no way Dylan would go back to a local school without me being very, very involved throughout. 

It is my experience the SEN education system is full of uncaring penny pinching fools. 

After attending tribunal to appeal the lack of support for Dylan being at home back in 2013 we waited 7-10 days to receive the news that we had lost and that the local school we had removed him from was deemed suitable, regardless of how far Dylan had progressed since leaving it. To lose after all that hard work of appealing was gutting to say the least, however we were aware that even if we had won we had an annual review booked in the following Feb. The education authority could have taken any provision gained at tribunal away, only 5 weeks after us winning it. 

The system is so messed up that they would have been well within their rights to do so and we would have had to endure the whole 12 month tribunal experience and expense to claw it back. 

A heartbreaking situation. Thankfully we decided to cut our losses and apply all of our focus where it mattered. On Dylan.

That was 4 years ago and I still feel a huge sense of injustice at the warped system of SEN assessment and provision. 

No other public funded service governes itself and has no one to answer to like the SEN system does. 

The reckless decision making and inadequate assessments are not permitted without justification – not in the NHS, not social care, not even regular education is run this way. But SEN teams make their own rules. They play their own merry tune and as a mere parent you have to dance to it. 

SEN teams can make life changing decisions about children and situations that they have never encountered and there is no one to question these decisions that have been made. 

Unless you go to tribunal.
 So £6000 later and potentially nothing gained. We had it confirmed; the system stinks, it’s corrupt and preys on the vulnerable. We burnt every last report, document and assessment. It was like therapy!

However since then I have happily reduced interaction with the education authorities as much as possible but the looming EHCP will not allow me such pleasure. 
The whole assessment process involves Dylan’s education being cut back to the bone and every little bit of progress and success being played down in an effort to confirm Dylans difficulties so that he can receive maybe part of any help that he needs. 
The prospect of selling my dear boy out to ensure the provision he needs is potentially safeguarded fills me with hate. 

Hate for the negative reports. Hate for the judgements. 

Hate for the whole system. 

It’s going to be a long couple of months.

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16.1.53- 12.02.08

Today would have been my Dads 64th birthday.

A simple man, we had a complex relationship when I was growing up; primarily due to me and my difficult ways; which seemed to smooth out once I settled down and had Dylan. As a family we would visit my Dad and his family weekly.
In his own way my Dad adored Dylan. Not at all a ‘baby’ man, he would hold Dylan if asked but was much more comfortable interacting from afar while Dylan was in my stepmums arms by making silly faces and blowing raspberry noises in his direction.
As time went on Dylans Dad and I were becoming subtly alarmed at the whispers from professionals about Dylan’s abnormal development; primarily his lack of developing speech.

However my Dad was full of reassurance and would tell us about an extended family member who ‘didn’t speak a word until he was seven years old, now he’s absolutely fine’.
I’ll never forget having to ring him and my stepmum on the evening of Dylans clinic appointment to confirm Dylans official diagnosis of autism.

I was unable to back this news up with any treatment plans or words of comfort to them as that afternoon we were literally given the news at the clinic and sent on our way. After breaking the news and biting back my tears my dear Dad responded with ‘Well, don’t worry. It doesn’t change anything does it?’

And that was just it. For him nothing changed. For the rest of my Dad’s life he never asked about Dylans appointments, assessments or progress. He continued to pull faces at Dylan whenever he would glance at him. He would make silly noises and play peekaboo with Dylans beloved muslin cloth.

It didn’t matter.

The diagnosis didn’t matter.

Nothing changed.

I appreciate that he didn’t ask about any assessments, not because he didn’t care but because of his need to keep things straightforward.

-Don’t rock the boat.

-Don’t worry about things you can’t do anything about.

I get that, I really do.

I often wonder what their relationship would be like now; Dylan would have really rocked my Dads boat.

As time went on there was no hiding the extent of Dylans disability and when this involves a loved one it initally comes with shock and heartbreak.  I wonder how my Dad would have coped with that and the ripple effect that managing autism had had on all our our close family over recent years.

My Dad became ill with cancer when Dylan was 4 and he died 18 months after. Dylan was still very vacant throughout this time and totally nonverbal, he was lost.

But still my Dad would speak to him, trying to entice him to echo his words, even if it was

‘Dylan… pub?’

Nope. Dylan wouldn’t even look at him. Totally unresponsive to his name, with no interest in people or things Dylan was just lost in his own stimming world.

But still my Dad tried, on every single visit, to see if Dylan would copy his speech.

Looking back I really appreciate that; the trying, the effort.

See there was no fakeness with my Dad. If he couldn’t be bothered with something he simply wouldn’t bother. But with Dylan he bothered, he always bothered.

Although he was never a lover of modern technology (he could only nearly work a mobile phone) I like to think that my Dad would embrace talking to Dylan with his iPad.

Hell now, Dylan could happily repeat ‘pub’ back to him and they could skip off to the local for a bag of crisps and a coke. Actually I could easily see that being a regular iPad request of Dylans if my Dad was still around!

Having looked back I painfully realise that Dylan would probably now dote on my Dad just as much as he doted on Dylan back then. By now I imagine their bond would be strong; both undemanding and comfortable in each others silence.

The realisation of this lost relationship makes the sadness even stronger.

Both sadness for me at the loss of my Dad and sadness for Dylan at the missed opportunity to have another loyal member to his small team of support.

Happy birthday Dad,  you are dearly missed xxx

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Proprioceptive Dysfunction: Blankets

Just out of interest I asked Josh and Grace;

‘Dylan always has a blanket on his head or his hood up or his head covered; do you know why?

Josh felt it was because the light might hurt Dylan’s eyes or maybe he wore it as he was worried about loud noises which might make him jump.

Grace felt that Dylan might be cold and so used it to keep warm.

I explained the insight that Dad and I got from a recent talk about Proprioceptive Dysfunction. For those not aware of the Proprioceptive sense it basically means to have an awareness of our own bodies in space and time.

– We know where our hands are without touching them.

– We know we are upright when standing and for example can easily gauge when there is a slope of step when we are walking. For this we can plan for the motion of adjusting to our environment as we are aware of where our bodies are in space.

Dylan has a dysfunction with this system. He will often appear to be “limp” and lethargic all the time despite being very active. He will frequently bump into objects and people accidentally and will trip and fall often, this is all due to him not being aware of his limbs or feeling able to maintain awareness of where he is in relation to himself or anywhere else. All elements of this affect his confidence and ability to integrate with others.

To explain this to Josh and Grace I used the example of our faces and heads.

‘How do we know we have a nose or a head on our neck without reaching up sand feeling it? – We just do, because we have this ability to sense it. Dylan doesn’t have this so much so maybe having a blanket over it helps him feel grounded and safe, so he knows where his head is.’

Both Josh and Grace looked at me thoughtfully, smiled and accepted it as a little nugget of Dylan wisdom. 

Another little step of understanding.

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Pizza Hut

Date night out this week with Dylan was lovely. 

We had a meeting with Dylan’s consultant earlier in the week and it gave me an opportunity to think about age appropriate expectations. When Josh and I go out he will often make requests to the waiting staff and on a recent hotel night away with Grace she loved ringing down for room service and ordering out supper herself.

So this week I tried to have an open mind with my expectations and opportunities. Dylan chose pizza Hut. He loves pizza, always has and I imagine he always will. The waiting area was empty and so we waited to be noted. I used this time to explain to Dylan that the staff would come over and want to get us seats. I quickly programmed the request 

‘ Table for two please’ 

into his IPad and let him know that he could use this to get us a table if he wanted. Well he loved it. 

When the waitress came over he quickly pressed the button and his iPad sounded so confident the waitress had no chance to look over at me. 

‘Certainly sir’ she said directly to him ‘please follow me’.

She then led Dylan over to the centre of the restaurant and gave him the choice of a table near the window or a boot on the other side. She didn’t even look at m – all of it was directed to Dylan. Dylan pointed over to the booth and she sat us both down. It was magic.

I know that Dylan wanted the special deal Pizza Hut do on a Wednesday – Unlimited pizza buffet, starter, unlimited salad, unlimited fries and bottomless coke. I quickly popped ‘buffet’ into the IPad and showed him where it was in the Pizza Hut folder. When a different waitress came over to take our orders I gestured to Dylan to use the IPad and he pressed the buttons and gave the waitress the iPad so she could see his request. 

 ‘Would you like chicken, garlic bread or ice-cream?’ 

she asked him. 

HIM Not ME!!! Dylan needed support to understand what was being asked but even after I had helped Dylan fid his words to make the choice she still addressed Dylan directly.  The pride on Dylan face was magical. It was so lovely seeing him be understood and his growing confidence. We talked throughout the meal and Dylan made full use of the unlimited food options.

Dylan requested more chips with the iPad and while I was away from the table getting more drinks I heard the waitress say to him kindly on the way past 

‘Only two minutes for the chips okay?’ 

I wasn’t even there, it wasn’t for my benefit; she was talking to Dylan. I was really impressed with the understanding and acceptance shown by the staff in the restaurant. We had a great time.
Getting ready to pay I explained to Dylan that he would need to get the waitresses attention by keeping looking at her so that she knows to come over, Dylan span himself right round on his chair so that he could seek out the waitress and kept looking at her until she came over. 

‘Can I have the bill please?’ 

on the IPad and I loaded up his Osper card so that he could see it through and pay for dinner for us both.

The only difficulty was with the toilet. When Dylan needs the toilet I take him into the ladies and wait outside his cubical. When out with Dad Dylan will go in the meds with him but that’s not an option when it’s just the two of us. We were suck when I needed the loo. I couldn’t take him in the cubicle with me – there’s not enough room and it’s not really appropriate anymore. I daren’t leave him outside the cubicle; now he’s thirteen Dylan no longer looks like a little boy and I worry about other ladies who may come into the toilet while he’s waiting outside my cubicle door, they may be frightened to see an older boy alone in the ladies toilets. I did think about leaving him sitting at the table and nipping in alone; I doubt he would have moved from the mountain sides plate of pizza in front of him but I daren’t try it, besides Dad and I haven’t planned how to manage things like leaving Dylan, even for a moment. He could bolt and run off or someone could try and talk to him or he could start shrieking or behaving inappropriately. We don’t know what Dylan would do unaccompanied nor how people would react.

So I sat and crossed my legs and vowed to discuss it with Dad once home so we have a plan for next time. 🙂