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Looking Back on 2016 -December 

Well, the end of 2016 is upon us.
December is always an unsettled month for us all. Crammed in with the Christmas build up, all the traditions, fracturing the normalising routines before that last minute sprint to Christmas day. It’s exhausting. 

For us, we’ve given up with traditions.  We do what suits us around Christmas depending on Dylans ability to cope with everything day by day. It works for us and it’s Dylans Christmas too after all.

We give presents from one another last thing on Christmas Eve so that we can take time over opening them and thank one another. Its also a pleasure to see our selected gifts being opened; focuses on the feel good factor of giving as well as the receiving. Sharing this as an event also gives a great opportunity for Dylan to see others open presents,  a skill which is only really practiced a couple of times a year so it has taken a while to perfect! 

But Dylan woke Christmas morning with little persuasion to come downstairs and open Santa’s gifts. And I’m happy to report that all were expertly opened by him before 8am. 

We have a quiet day at home with just us and my mum over for dinner. Its been a wonderful Christmas. A great finish to the end of a great month and a magical year.

So. To the end of 2016:

Thankyou, you’ve been amazing. 

And welcome 2017; We’re ready for you!

Wishing all Dylans readers and supporters a happy and healthy 2017. Thankyou for following, commenting and just generally being there through the therapy I have been provided through writing this blog. 

It’s been a ball xxx

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Looking Back on 2016 – November

No longer

‘Remember, remember the 5th of November, gunpowder treason and plot’ its –

‘Remember, remember ’16 November, doughnuts and speakers and Trump.’

November was a varied month. Dylan went to the Krispy Kreme factory and had an excellent time making doughnuts  – and then eating them! As the searching for a friend was unsuccessful we thought in the meantime Dylan can still be around more people socially even if they’re not exclusively with him. So we signed up for some home ed trips, Krispy Kreme factory in November and then some candle making and truffle making workshops in December; just in time for Christmas presents. Dylan really listens now at these events, he focuses on the adults and has his anxiety well under control so that he can take part in the event. It was a real success!

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November was also the start of Dylan being more independent with making purchases and stringing together the skills he has been learning over the past few years. There are lots of gaps in skills and work needed to move this forward as an independent skill but I’m so proud that Dylan now has enough confidence to be able to make these huge strides and he is using his iPad so well. The Wednesday night dinners out are helping with this too!

 

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A rare night out for Dad and I to hear Dean Beadle speak to local parents and professionals about his autism. Full experience is outlined here, it was a really informative night as a parent and a valuable episode for both Dad and I in the healing process from the viciousness of the past few years of Dylan’s education.

And Trump. Well. Not much to say really apart from the acceptance of this rude opinionated and dangerously bigoted man to lead the most powerful country in the world is pure lunacy. On this flip side however I do recognise a similar mind-set of

‘Don’t let anyone tell you you can’t; Anything is possible’.

The similarities however there end.

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Looking Back on 2016 – October

4th -10th October is Mental Health week.

Depression, Social anxiety, addiction, all well documented mental health disorders, all linked to and exacerbated by loneliness. Loneliness and social anxiety may be chronically intertwined, creating a vicious cycle of isolation and fear of isolation. Now throw non-verbal autism into the mix and you have a recipe for some serious potential mental health needs.

So this month it occurred to me – Dylan needs a mate.

Now this isn’t a need because he isn’t at school. This is a need because he ISN’T at school – there’s a difference.

When Dylan was at school he was absolutely terrified of the children he was schooled alongside. The noise, the unpredictability and lack of compassion sometimes from children within special schools terrified Dylan. There were known episodes of aggression and violence from other children which were put down to just being ‘one of those things’ with children with additional needs.

These incidents scarred Dylan mentally and physically. Now that Dylan isn’t at school he is confident, sociable, less fearing and generally more interested in the wider world than he was in a school environment. Dylan doesn’t need a peer. No Dylan needs a mate, like a friend. Someone to do things with, spend time with. To be a model for him with behaviour and to just ‘hang out’ really.

But where do you find such a thing – believe me, I have spent hours online, looking both locally and nationally for befriending services, voluntary services, even Duke of Edinburgh courses, colleges, youth groups.

What did I find? – A big fat nothing.

Now I don’t want to put an advert in the paper for a paid friend – although I understand that costs may need to be covered – But where do I find such a person? I really would think that there would be more people like Dylan out there who just needs a buddy for a couple of hours a month to go and get a Macdonald’s together? Someone who has an interest, has a bit of an idea that they may need to put in a bit effort before they get anything back and a bit of understanding. The ideal person would be someone like Josh. But not Josh.

To go and kick a ball around, go bowling, pop for a coffee, anything. Dylan wouldn’t mind what they did but I am becoming painfully aware that he would love to have a mate come and knock at the house for him and then go and kick a ball around at the park for an hour. He would adore it.

 

So far the search has been fruitless. But it’s not over.

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A Halloween picture – just because its October 🙂

 

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Looking Back on 2016 – September

 

Back to school after the summer break. I so love having them at home. The house is so noisy, so messy, so lived in. We have seriously outgrown this house, it bulges when we are all in it together. It bulges with love, with laughter, niggly arguments and catty comments. We all adore one another.

The academic years starts quickly with targets being set and the pressure piling on. I believe the Autumn term is the hardest. So much rest and relaxation over the summer months and then there’s the looming dark evening that become cold dreary afternoons, The expectation of better behaviour, better attention, better grades ‘now you’ve come up to class X’ when really only 2 months have passed since they were in the little class below when they could watch films and make models out of cardboard and nothing really seemed to matter. It’s a lot of pressure from ones so young. They get tired and irritable and stressed and their heads hurt from trying to remember everything, new rules, new procedures, new expectations.

So I started to take the children out one by one, for dinner, to given them that little midweek boost and to allow them a small respite from some of that pressure. Its been great. They each take it in turns and we go out for dinner and a chat. The boys love it, they eat and we talk – Josh more than Dylan –  but we still talk! Grace not so much, she gets upset with talking, she’s a little pressure cooker. I’d love for her to speak freely about her concerns and worries but she won’t, she hates getting upset. I have let her know that I am always here for her to talk but she always says she doesn’t want to. So for her we go and do something else. We go bowling, or to see a film or something where we don’t have to talk, we can focus on something else and enjoy each others company.

I love spending time with them, they are great people.

I love it. I really do.

I hope they do too.

Image may contain: textDylan’s favourite place to go is the local pub. At first people would look over at us, Dylan would order his food loudly on his iPad and with it being quite a quiet village pub people would look at him humming or stimming. After a couple of weeks of visiting the staff became very used to him. I always ensure that Dylan would order his own food and drinks using his Ipad. Some staff would still look to me for clarification for this but I would simply ignore them. I’m getting quite good at that; ignoring people. Much like people try to ignore Dylan when he talks to them.

Facilitating communication with other people in resturants at the moment comprises of the same routine at first…

  1. Us both being asked for our order,
  2. Dylan will answer with his iPad,
  3. The waiter will will then look to me and ask me a question about Dylans order, be it sauce, size of portion etc.
  4. I will then look to Dylan in silence.
  5. The waiter will then repeat the same question.
  6. Again I’ll stay silent but I will switch on Dylan IPad as a prompt for him having to answer the waiter.
  7. The waiter will then stand and wait while Dylan types out his response.With me smiling sweetly at them both. By this point the waiter has usually grasped the point.

This process really only needs to happen once or twice before they realise they get more response out of Dylan than they do me. Works every time!

 

 

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Looking Back on 2016 – August

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21 Days of Modelling – Dylan achieved a total of 217 new words throughout the three weeks!

The whole challenge was well documented throughout Augusts archives. It was a wonderful insightful experience which I shall definitely revisit next year at some point.

On day 11 of the 21 days of modelling I tried to be non verbal to fully immerse myself in AAC.

Wowsers, tough doesn’t even scrape the surface.

It was frustrating and I was slow. I couldn’t find the words fast enough and I could see people getting bored with me and I only did it at home with the children!

I even found myself breathing differently as the anxiety of not getting my message across took over every element of my focus. One thing that struck me throughout was how incredibly lonely I felt. I could see and hear what was going on but was unable to keep up to comment or respond to interactions going on around me. I gave up on trying to become involved unless communication was actually directed towards me and even then it took time and patience for the response to be composed.

It certainly helped me try to understand the difficulties that Dylan has when using AAC and ensured that I allowed him more time and space to be able to use it efficiently.

 

August 2016 also marks five years since we took Dylan out of school and had him full-time at home. I remember summer 2011 clearly and the terror and dispair we felt when we made the leap to remove him from special ed.

To be honest we had nothing left to lose.

When we took Dylan out of school he was like a little frightened feral mouse. He couldn’t sit, he was constantly twitching, he couldn’t respond to his name and wouldn’t come when he was called. He couldn’t hold a pencil, use a knife and fork, he couldn’t count, couldn’t use glue appropriately, he couldn’t read. He would smear his saliva over every single surface. He would run, flapping his hands from one end of the room to the other all day long. He would go upstairs when people came around and wouldn’t come down until they had left. He would verbally stim constantly, loud irritated humming, intermittently peppered with screeched, hand flapping or a constant ‘pill rolling’ motion with his fingers which would intensify when out-of-doors. No meltdowns, this was just what Dylan needed to do to get through the experience of being overwhelmed and anxious, I realise that now.

People used to stare, unsure of what to make of him. He didn’t look disabled or unwell; just really odd. We were lost with what to do to help him. School were unconcerned, and denied us any concerns – Dylan’s lack of development was always put down to his autism ‘this is autism’ they would say, like what more did we want?

We wanted more so we went and we did it.

 

5 years on it’s the best thing we ever did.

 

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Looking Back on 2016 – July

6 months through the year and time for change, all change.

July was the month where Josh left primary school to start Secondary school. He turned 11 and Dylan turned 13. I always find birthdays a time of reflection, its our individual new year, a year older, wiser, a chance to reflect on the past 12 months and a chance to make plans for the upcoming year. I have always found this a more painful event with Dylan, it has always been

‘Dylan’s birthday, now he’s 5, but still not talking, as soon as he can talk he’ll be okay’

‘Now he’s 8 years old, but still not talking,’

‘Dylan’s turned 11 years old, but still not talking.’

I’ve always found myself looking back over the last year with sadness and not really sure of what to hope for in the upcoming year.

This year felt different. Dylan’s achieved heaps this year. He’s developed skills and active ‘tasks’ or targets but he’s also become more comfortable in his own skin, he’s gaining confidence, hes seeking people out and it seems hes finding himself as a person; Or am I starting to see him more as a person? Probably. I’m certainly finding the more I try to get under his skin and see from his perspective that the more logical his behaviour is. It takes more effort but the communication is there.

This year we didn’t say, ‘Uh Dylan’s 13, still not talking’.

Dylan definitely IS talking – all the time, but due to his verbal dyspraxia, we just can’t understand him. He is becoming more and more confident and speedy with the iPad and although he needs prompting to use it – it’s not his ‘go-to’ way of communicating – he can be understood by EVERYONE when he uses it.

This development from this year is so valuable; both Dylan’s developing ability and my changed perspective.

 

 

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Birthdays also allow me time to reflect, on my babies births, their first days, months. Plans that were made, developmental books that were brought in anticipation, read from cover to cover. Eagerly awaiting their arrivals. I have often refered to the essay ‘Welcome to Holland’ by Emily Pearly Kingsley as an explanation for the feelings of not having the perfect birth, perfect child, perfect experience that you expected that you find within the books and from hearing others experiences.

What I’ve realised this year is that I’m not in Holland, I’m in Italy too.

See Italy is parenthood, a destination that I have chosen along with everyone else that’s here. Being a parent is my choice and its is riddled with uncertainty, responsibility and sometimes quite often heartache. But it is a journey I chose to embark upon.

Upon arriving in Italy with its gondolas and Colosseum I’m not as fluent in the language as I thought I may be, its taken me a bit longer to learn the lingo and I have had to learn some different phrases.

It isn’t always sunny like the brochures say, in fact it has some pretty impressive storms but they just make the sun beam even brighter afterwards. When the weathers bad there are some beautiful cafe’s to explore and shops to meander around when the fast pace of the Italian lifestyle gets too much.

And it can get too much, for everyone that lives in Italy, the pace and the bustle and the pressure can get too much. Not everyone is sure they are suited to Italy, it is a very different place to live and some people find the adjustment of living in Italy harder than others, some need more support. Not because of special needs but because PARENTING IS HARD!

I’m right here next to every other parent, finding my way, wondering if I am doing everything I can, wondering if my child will be okay, just the same as they are.

So here we all are in Italy.

All having very different experiences,

All raising very different children.

Is life with Dylan quite the same as what I thought parenting would be? Not at all

But neither is life with Josh or Grace. Nor life with my husband. Nor any other aspect of my life. The only thing that has gone as I expected with this journey is I wanted to be a parent – And now I am one. Everything else has defied my expectations

When I had my children I dreamed of snuggles, nappies and sleeping innocent faces. I dreamed of watching them waddle, teaching them to play and tickling their toes. I dreamed of smelling their skin, holding them while they cried, laughed, screamed and slept. I dreamed of loving someone who would love me no matter what I did. I vowed to honor that power. My dreams came true.

Holland doesn’t have the pace of my life, nor the excitement.

I’m well and truly in Italy.

Its taken time but I’ve realise that having a child with a disability never for one minute impeded my dream catching. And neither should it.

And after years of ‘as soon as’ I’ve realised – Its already okay 🙂

 

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Looking Back on 2016 – June

June brought us two scandals, one for the country – Brexit and for SEN, -the busting open of the SEN scandal of LEA solicitors Baker Small.

A set of gloating late night tweets allowed the company to display their true colours with their attitude towards parents of children with special needs, the outcry from parents across the country was phenomenal and made the mainstream press for the best part of a fortnight, the company soon dissolved.

‘The system is awful’ -Mark Small.

In the last few days I’ve felt insulted. Bitter. Angered by the weekends tweets by Baker Small who appeared to enjoy the difficult and heart-rending process of sen support and tribunal.

Then relieved and reaffirmed by the thousands of parents who agree they and their children have like us been bullied by their education authority into shutting up and putting up while watching their children fail. I am glad the sen battle which is often kept behind closed doors is now exposed and the general distaste from local authorities for families with disabled children is out there for the public to see.

Today, I feel sad, sad for our loss.
Sad for Dylans lack of support. His isolation that we as parents have caused by removing him from a substandard school place.
Sad for my loss. I’ve worked in excess of 45 hours a week, every week, for the last 5 years to fund Dylans education because the local authority -advised by Baker Small- reckon that the shoddy placement provided by them was sufficient for Dylans needs and so refuse to fund Dylans ABA. We paid over £5000 in tribunal costs to try and fight this and have since paid over £2000 a year to fund and maintain Dylans home programme.
I feel sad for Josh and Grace who always seem to play second fiddle to Dylans schooling which seems to have dominated our home life for half a decade. For more than half of Grace’s life we have been juggling patental/teacher/advocate roles when we should’ve been dedicating this time to her and her brother.
I feel sad for Dad who has the absolutely wonderful job of teaching Dylan at home full time but has sacrificed so much in the process.

We didn’t cause this. We’ve been let down by what Mark Small acknowleged is an awful system and this breaks my heart. While fat cats like him are making money out of this failing system there are thousands like us who are paying the price. With our time, with our money and with our children’s lives. Gutted.

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Brexit divided the country mid June, sadly not close enough and the majority of the great British public appeared to vote to leave the EU.

For those with disabilities, the European Court of Human Rights is vital and the European Union has been overall positive for disabled people: Packaging of medicines must now include labelling in Braille; disabled drivers are reassured that their parking badges are recognised across the EU; disabled people have the right to free assistance on board aircraft and within airports when flying from or within the EU to name a few examples. These are all adaptations due to the EU not the UK.

In austerity obsessed Tory UK these will diminish and with victory for the right-wing Brexit campaign it is feared that it will exile the Human Rights Act leaving us all at risk. Already we are seeing that the most vulnerable in society are being squashed.

In years to come Dylan will be an adult who will need constant support, if family are not around to do this for him where will this support come from? If you don’t go to the benefits centre you don’t get any money – no one checks on you, how would anyone know if Dylan has any money? He would starve and probably die. And under austerity and a Conservative government this is okay – sounds harsh but its already happening.

We were at the airport when we found out that the UK had voted to leave – We were on our way to Corfu for our annual holiday. We nearly chose not to come back!

The holiday was a great break away, we go to the same hotel every year, the owners are considerate of Dylan and his needs and its a real break for us all. Dylan swam, took his Ipad and we even tried some social sorties which worked really well! The Proloquo2go package on his iPad talks for him and having 10 days away really gave us time to get it set up and model using it all day every day. Dylan had a great time, he really enjoyed being understood and even tried making friends with the other children in the hotel who played with him Josh and Grace beautifully, We were very lucky to be away with such a nice bunch of people.

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