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Retail therapy 

Wowsers this week’s been a whopper. 

We as a family had some good news last week that there may be some progress with finding a bigger home for us. 

“That’s great” we thought 

“Maybe, just maybe, we could move by Christmas time!?”

 Fast forward only two days (thats right two days!!) and we’re standing outside a beautiful 4 bed house with the papers signed and the keys in our hands!!

Yes it’s been positive, yes it’s been quick and yes Dylan doesn’t know what’s going on! With very little time: we need to have completed the move by early March- and absolutely no preparation for moving made, a lot of the physical graft and preparation has fallen on Dad. Fine usually but when you’re home educating that means Dylan too!

So after a few days of hanging around hardware stores and sitting in a cold dirty house for hours we took Dylan out for a bit of Dylan time.

Hoovers. It’s not the sucking motion,  it’s not the appearance and it’s certainly not the noise they make but Dylan loves a good Hoover. Its the manufacturing stickers on the back that Dylan is interested in. He moves each appliance so he can see the sticker on the back. I followed him around for about 15 minutes doing this. Afterwards much calmer. Oh and hungry, we skipped dinner; off to McDonalds we went 🙂

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‘Special needs children are given to special parents’, ‘What doesn’t kill you makes you stronger’ and other claptrap

http://themword.ie/calling-bullshit-special-children-sent-special-parents/
Special parents and special kids feels patronising and a bit judgemental.

Yes, its true that Dylan has needs which are different because of his autism and communication difficulties but is that what makes him special

No. 

Let me tell you what does.

He has an unbelievably wickedly accurate throwing aim. 

He laughs and chuckles like a baby, unadulterated and contagious. 

He likes to share and is very giving. He has a fantastic sense of humour.  

These are the bits of Dylan that make him special. 

Not his autism.

And us as parents are we special? Hell no! 

I struggle. 

I have a temper. 

I am tired.  

I am a human. 

Throughout our journey with autism and Dylan I have grieved, at diagnosis I have been angry, I have – time and time again – totally misunderstood and overlooked Dylans needs, I have unknowingly made Dylans life harder and I hate to say that in hindsight some of the things I have said and done may have been unintentionally unkind. 

The truth is prior to Dylan receiving his diagnosis my only experience of autism was watching Rainman. I hadn’t knowingly had contact with anyone else with autism so I didn’t know what to do or how to help. 

My first point of reference where professionals and I’d followed their advice for a long time. None of their words of wisdom were about Dylan as a person or his needs. It was all autism, as if there was no Dylan, just autism. Professionals would talk about Dylan in front of him as if he wasn’t there. They would test him and highlight tasks he is unable to complete, all negative, lack of progress, his perceived lack of willing. 

As parents we were often told Dylan ‘is a lazy child’ while he was sitting next to us and, not knowing any better, we slowly developed the mindset of professionals.

 We lived like this for many years and I cannot imagine how miserable this must have been for Dylan. 

I mistook his repetitive self destructive behaviours as ‘autism’ instead of an expression of how miserable he felt and difficult he was finding life back then. 

Luckily, highly due to the internet, I expanded my knowledge and realised that Dylan had options for an alternative life. After making changes Dylan has been happier and progressing ever since.

The bottom line is that truthfully I am a regular mum who’s doing her best. I have made mistakes and for that, Dylan believe me, I will be eternally sorry. 

I do not deserve to be considered special.

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Up, up and away 

Grace’s 10th birthday party was this week and she opted for a climbing theme. We arranged for seven giggling 9-10 year old girls with Josh and Dylan to all have 90 minutes on a climbing wall with an instructor.

Dylan appeared keen from the get go. He quickly grabbed himself a helmet when instructed but then the whole concept got a bit real and from that point on Dylan was a bit more apprehensive. 

When Dylan starts to get anxious he will whine and winge and usually sit out. He get frustrated and bored and will then require direct attention from a parent to ensure he is kept focused and behaviours don’t spiral for him. This isn’t bad behaviour but Dylan’s anxiety coupled with frustration at himself for being unable to complete the task. To most people they see “Dylan can’t do it; he needs to sit out.”

The party leader was relatively new so she was being supported by a more experienced instructor, lets call him Bill. On the registration form it requested any medical details for the children and for Dylan I added ‘autism -non verbal’.


Bill instinctively saw Dylans anxiety but also his wish to be involved. He showed Dylan the equipment and let him hold it before asking if he would like to wear it. He spoke directly to Dylan and copied the way I gave Dylan simple language and clear choices so Dylan could repeat his option back to me.  
Dylan will link onto my arm when we’re out and gradually through the party when he was ready to try a bit more equipment or to feel the wall a bit more,  Dylan started to unlink my arm and go and link arms with Bill.

Well. He only got on the flipping wall!! And more than once!!


Bill was so supportive and reassuring for Dylan. Once off the floor Dylan would panic, it looked like his correctly fitting groin harness was sending him into sensory overload and he wanted to get down now. Dylan would grab onto Bill’s hands and hold them tight but Bill took it fine. Some people recoil when Dylan tries to touch them. I suppose being an adolescent boy Dylan has some tactile needs that are closer to a boy younger in age; like the arm linking or hand holding and not everyone understands why Dylan does this. Bill didn’t care.  
Bill was cool.

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Throwback Thursday 

Last year Dad ran the London Marathon to raise money for Caudwell Children,  a charity which has provided a grant annually to supplement Dylans ABA costs. 

During early 2016 we set up a Facebook page to begin to document Dads training progress and the impact that Caudwell Children’s help had on Dylan.

This was the post a year ago. 

**So this just happened** 
Dylans gone and brought himself a mcdonalds. Used the machine, used his visa card to pay and queued up to collect his food. On a busy Saturday, in town. Can’t tell you how absolutely massive this is for him. For all of us.  We have begun to chink away at the massive feat of teaching independence. And it’s exciting!
Just got to work on his dietary choices now… 😉  

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Sunday Rituals

Sunday evening is historically the evening that all children have a bath, a hair wash and then have fingernails and toenails trimmed.

I’m not too fussed about them staying up later on the Saturday night and maybe not bathing but on Sundays, especially on a school night they do; They always do. 

Dylans sensory needs have always run wild with the excessive amount of positioning, physical touch and concentration required to complete such personal hygiene tasks. Progressively over the years we have always managed. Sometimes with tears but more recently without.

This evening after completing a reasonably independent bath and hairwash Dylan sat beautifully with me and had all fingers and toes tidied up. Yesterday we brought Dylan a new toothbrush and tonight he was happy to brave a go with it. Too happy almost! 🙂

Dylan tries so hard and has made so so much progress. To think before I had any awareness of sensory processing disorder I would literally be chasing Dylan with a toothbrush trying to brush his teeth, terrified that he would develop cavities or decay due to my inability to clean his teeth properly.  To see him now brushing his teeth independently and so proficiently is amazing.

This boy makes me so proud.

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Hear him Roar-y

Dylan makes noise all the time. 

Dylan being ‘non verbal’ does not mean ‘non noise.’ Because of this we sometimes unintentionally don’t listen when Dylan speaks. Due to his dyspraxia his speech often sounds like stimming noises. We often hear him but don’t always listen, it’s habit; after 13 years we simply aren’t used to Dylan trying to speak to us.

This week Dylan really had to articulate his words to get Dad to hear him.

*loud vocalisations* “Caaaa-rr”

Dad “Car Dylan? You want the car?”

Dylan “Yah bee”

Dad “Where do not want to go?”

Dylan “Non. Way way”

Dad “You want the car? To go where?”

Dylan “Non, non tang oo. Way way”

Dad “Sorry Dylan I don’t understand. Can you find the words on your iPad?”

Ahhh,  remote control, comfy sofa; Dylan didn’t want to go anywhere. 

🙂

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Socialising and Customer Service

A rare day off in the week with just Dad and Dylan.

We spent the morning treating ourselves to a breakfast out. Dylan’s favourite of bacon, sausage, tomato sauce beans and hash browns went down a treat. I helped Dylan to add it all onto his iPad so he could make the request for himself. The waitress didn’t really pay attention to him or the IPad and misheard his request of ‘no egg please’ and thought that Dylan wanted extra egg. We needed to quickly intercept as the arrival of the breakfast with a big fat egg on it would not have gone down well!

 

After breakfast we headed over to the bowling alley to meet other home educated teens for a bit of a social meet. It was loud. It was busy but we lasted 2 hours and Dylan got involved. The other children varied in age from 12-15 years and had mixed abilities but everyone was kind and considerate to Dylan.

Dylan had no idea when it was his turn or how many goes he could take at a time but the older kids really looked out for him and made sure he was okay. He seemed to really enjoy himself.

Heading out like this is a big thing for us. Dylan was always very anxious at school; and around other children so to take him to socialise with a whole lot of children that he doesn’t know is a big thing, but he loved it!

 

The day finished off with plans to return next time. This evening was Dylans turn for the Wednesday night out and yet again Pizza Hut was his restaurant of choice. A slight panic for me on arrival as I realised as we were being seated that there was no Coke available – the bottomless coke is a big incentive for Dylan. I quickly explained to him once seated that he would have to choose between either apple juice or orange juice because the Coke was broken – We had to go and have a quick look at the machine to prove I wasn’t lying but once reseated Dylan decided he was having apple juice and the world didn’t end! Phew!

We had a nice meal and two members of staff commented on Dylan’s iPad – directly to Dylan – about how cool it was that he was using one. Every time we arrive I feel a bit that Dylan may discussed behind the scenes as ‘the boy with the iPad’ but to be honest that’s fine – at least they are noticing!! I don’t know – maybe it’s paranoia on my part that they notice but Dylan and I are doing it; we’re getting out there and it’s okay! Dylan finished up the visit by practicing requesting the bill and using his card to pay.

 

Dylan showed me in the car on the way home how much he like to rock out to the radio and will happily flick through the stations until he finds a song that he likes, he then request to turn it up by signalling round with his finger next to the volume dial. I don’t let him have it any louder than 20 but he will often try and leave it on 21 or 22 thinking I won’t notice. Cheeky Monkey!

 

The differences between this morning’s eating out experience and this evening made me think.

Customer care is so important but there are so many people who just don’t know how to manage speaking to someone who doesn’t always answer you back verbally.

I must admit this was something I was unsure of prior to having Dylan – the use of AAC and how to communicate with people who may not respond or communicate verbally.

So I’m making this my mission for 2017.

To expose the retail world to AAC in a real and functional format.

To be approachable and invite interactions.

To give credit where it’s due.

I’ll spend the year with Dylan exposing people to AAC and complimenting staff members that are attentive, accepting or encouraging.

I’ll send emails to companies head offices and tweets to managers to ensure they recognise excellent customer service to those with varying abilities.

 

Let’s get AAC out there!

 

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New Concept… Sharing

Monday afternoons are manic. 

Grace and Josh often enjoy after school clubs until 4pm, and then twice a month we rush over to a neighbouring town for a bi weekly disability inclusive art and craft club. All three kiddies attend and love it, it’s really only our family and another couple of children but it allows Dad and I a bit of time to catch up on housekeeping etc without the little ones needing to interrupt us. 

The timing of the art club backs straight onto an inclusive sports club just round the corner from where we live. This club then runs every week pretty much right up until bedtime. 

Monday afternoons we don’t have room for error; it’s like a military operation to ensure that we get to where we need to get to, when we need to get there.

Where possible I tweak my working hours a bit to be able to assist. This week I got out of my car and into Dads waiting car full of kids fresh from the school pick up to head to the first club. Dads always super organised and has everyone a little packed lunch so no one complains about being hungry between clubs. Once I’m in the car I’m welcomed by greetings and stories of everyones day.

Dylan who is sitting in the back thrust a packet of crisps at me. 

‘You don’t want these Dylan?’ – No answer ‘Hmmm, salt and vinegar, I thought you liked these, do you want them back?’ 

‘Noon’

I pop the crisps back into the lunch bag and continue with the conversation.

Two minutes later Dylan taps my shoulder.

‘Muahm, I waa ippp’

‘You want your crisps back?’

‘Yah bee’

And sure enough, he gets his crisps back and continues to munch away.

This is happening more and more. Indoors Dylan will often ask for a cup of tea. We’ll answer him ‘yes, you can have tea’ for him to respond with ‘tea?’ many many times until I have felt exasperated

‘ Yes! You can have tea!! Go and make yourself a cup of tea!’

I had felt it was either a communication breakdown and Dylan not understanding that yes he could have the tea so he would keep checking or maybe that it was a touch of laziness as Dylan seemed to change the word slightly to symbolise a strange type of request.

Once he makes his tea he will often bring it to us, showing us right up in our face, waving the nearly overflowing cup around clumsily – ‘Careful Dylan, you may spill it! Go and sit down and drink your tea, well done’

Dad told us about Dylan dping this on Monday during the day. This exact same situation occurred, Dylan kept questioning about tea, went and showed Dad in his face once the tea was made and was asked to go and sit down. 

It was only after a couple of minutes that Dad smelt coffee and went to the dining table to see what he was doing and there was a mug of coffee on the seat next to Dylan drinking his tea. 

‘Coffee Dylan?’ Dad questioned as Dylan doesn’t drink coffee anymore – 

‘Is this for me?’ 

‘Yah.’

So all this time, we finally consider that the repeating isn’t confusion or echolalia and bringing things to us isn’t getting rid of what he doesn’t want or a frustrated thrust of a desired repeated item. It was simply Dylan trying to ask us if we may like a tea too – a behaviour he often sees modelled to him – and then offering us his item that he has to see if we would like some too. 

To share.

Amazing.

Needless our lesson has been learnt and Dylan is being taught to say the words on the iPad to ensure that Dylan doesn’t get further misinterpreted or seen to be ‘oversharing’ and have us taking too many crisps or chips, and also to make sure that Dylan can have his kindness and generosity acknowledged and rewarded.

 

I’m sorry I didn’t realise what you meant Dylan – yet again I feel I’ve let you down.

 

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Tribunal memories 2013

A memory from 4 years ago.

We lost Dylan’s tribunal yesterday, sad news but with reports like this making mainstream publication I feel more convinced than ever that what we are doing is right and the ruling is wrong. 🙂

My kid deserves more. 

Reading articles like this are so reaffirming. 

Four years ago our fight with the authorities was over.

We were plunging all our efforts into Dylan rather than a system that focuses on its provision rather than the children its is paid to support. 

We vowed that Dylan would continue to learn, at home, supported by Dad and myself. 

During the tribunal process we gained a huge amount through that year. It gave us insight into a highly corrupt, discriminating, publicly funded method of disability ‘management’ which is geared to crippled parents financially. 

We had to meet with some of the most uncaring unprofessional ‘professionals’ we have ever had the misfortune to come across and been told some heartbreaking, uninformed lies about our son purely in an effort to break our spirit and hurt our feelings.
But it also forced us into private professional assessments. 

These have given us a true insight into Dylan and what a truly remarkable, beautiful little boy he really is despite the profound difficulties he has on a minute by minute basis. 

Dylan has learnt. 

He can write his name, he is talking, slowly, but functionally. 

He enjoys being around us and others. He can add numbers, he can count, he can play board games, he can make animal sounds, he can request items, with manners and is learning to understand when told ‘no’. 

He is progressing, happy and doing so well, as he should be like any other child. And he is continuing to do so with us teaching him at home.

We didn’t realise it at the time but we didn’t need tribunal; we’ve already won  🙂