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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.

Facebook post June 2016

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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Looking Back on 2016 – May

May, summer was on its way and the sun was shining. Dylan was embracing the ‘making things’ element of his day time education – Cooking, wood work, lots of time out doors enjoying the fresh air. Theres little pressure on Dylan within his day, we recognised that sometimes just functioning in the presence of others is a strain. As long as progress is being made, it will all be okay.

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For the family, Josh had exams which put a huge amount of pressure on him, on all of us! Although I kept telling him that these exam cannot measure how awesome a person he is nor how kind or considerate or hardworking he is. The external pressure from schools and peers made it almost unbearable for one so young. This pressure is new to us, having Dylan missing all these unnecessary yet unavoidable pressures and demands we had been oblivious to the stress that typical schooling can hold.

For me all the raising awareness and highlighting the positives of Dylan and his differences throughout April had made May feel like the month for action. I felt compelled for change, to make active improvements and to reach out, totally unsure of how though but the fire was burning within.

Then on 12th May some devastating news. Kreed died. Kreed was a 18 year old man living in America. He had autism and used a device to communicate. I had followed his journey on Facebook for about 2 years previous. Watching and admiring how his parents – one of whom is an ABA consultant talked to him, expected things of him. And it worked.

We don’t know anyone that is affected by autism like Dylan, I have lots of friends who have children diagnosed with autism. They are often younger and are developing, albeit slowly than their peers but they are developing. Kreed was a little bit older, having the same mannerisms and look of Dylan sometimes. We have ever been told what to expect from Dylan, not cognitively, with his behavioural nor anything, we are entering his teen and adult years blind. Seeing Kreed and his life was like a sneak peek into the future and it made the future a much less scary prospect.

Kreed had been progressivly unwell for a while however his death hit me like a truck. I honestly grieved for him which is bizarre as I never met the lad. I found out he had died on the morning of 13th May and I remember I somehow made it through a morning of work with a medical student. I dropped the student off and parked up in a residential street before just breaking down in floods of tears in the car. The whole injustice of his death and the very special place I held for him reminding me so closely of Dylan was heartbreaking. I still cry for him now.

By Kreeds death I was cruelly reminded that life is short, unpredictable and sometimes bad things happen to good people. We are all here on this earth with limited time, we must make every second count.

Shortly after Kreeds death I began this blog, it was lots of little posts to start with, things that had been swimming around in my head for a while but I needed to get written down to achieve some order about it.

‘With a hop,skip and a jump’ was formed shortly after.

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Looking Back on 2016 – April

April 1st is World Autism Awareness Day which kicks off the whole month of April as being Autism Awareness month. This year there was a bit of development in that not only awareness but acceptance was being requested. Equality isn’t everyone having the same but everyone being able to access the same.

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Within society we should all be striving for the third picture in the second image

 

Due to the highly evoking political developments in April – 2016/17 budgets, financial cutbacks, austerity April was not a positive month so most of our time was spent seeking the positivity, sharing stories, promoting awareness. I don’t share this blog with family, only a small amount of friends and the rest of the internet. Usually I try not to bombard my friends with Autism information (although I probably do!) I am after all a parent to NT children, a wife, daughter, nurse, woman etc. Autism isn’t the only string to my bow 😉

April however is an exception. Every day I post a picture of Dylan with information, details of our lives, I sing from the rooftops and gloat about the things that we are doing. This often creates interest; people comment on how busy I am and how well Dylan is doing. I am aware there is a lot of negativity of the burden of having a child with additional needs and when times are hard it is easier for people to become negative about all around them. I focus on the positive elements of Dylan, his progress, the differences and how they enrich my wider life by providing me with additional skills and insights. This occurs every single day but April is a month where I can publicly bleat on about how much I love Dylan.

I love it 🙂

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In early April Dylan had his Statement Review meeting which is generally worthless. The document that we meet to discuss involves Dylan’s education plan for school; he doesn’t go to school so it’s usually a pretty quick meeting. My reasons for attending this is that if something were to occur and Dylan needs to go back to school – like me dying or something as believe me that’s what it would take!- Dylan would be able to hit the ground running with this prepared document instead of being held within a system that would take months to arrange provision for him. With his statement document already written they would have to do this instantly. Somehow, this is for my peace of mind.

This year was different in that I insisted that Dylan attend. He hated it as I suspected he would. All that sitting around and talking bored him and the building was bright and noisy. Although it was hard for him I think it was important that Dylan is real to these education people. They are after all making decisions about what he needs and would have in our absence but none of them have actually met him. Compared to previous years when the negative statements would flow easily I think the general approach regarding discussing Dylan in his presence made them speak with a little more compassion and consideration which made the whole event easier for me. I often get upset and angry at these meeting due to the negative light that ifs often shone on Dylan when I know he works so blooming hard!

Also in April Dylan’s Dad ran the London Marathon and raised £1599 for Caudwell Children the charity which gives us an annual grant to fund the consultancy fees for Dylans ABA programme. Caudwell Children gave us the initial funding to get the ABA set up, an outlay which we would never have been able to do without 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 last year and raised £700 for them, this year was Dads turn.

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We all went to London on marathon day to watch and support him.Image may contain: 2 people, indoor and close-up It was a long busy day and with myself as the only adult to watch all 3 children it could have gone so wrong but they were all fab.

 

Josh donated his lunch to a homeless lady on the way there and they all watched the constant stream of runners for hours. We were also lucky enough to see Dad run past and cheer him on, he looked exhausted bless him!

 

18th – 24th April was the 7 Days of Action which is a UK campaign that was started on in 2016 by seven parents whose children were detained in Assessment and Treatment Units.
The aim of the campaign is to raise awareness of the lives lived by the 3,000 people with learning disabilities and autism who are currently trapped in these Assessment & Treatment Units.
Ultimately, the campaign would like to see everyone out of units and living in a home of their own.

As part of the campaign a daily story was shared publicly for each of the 7 days surrounding young people including Stephen, Robert, Chris, Tianze, Thomas, Jack and Eden who have experiences of being detained in assessment units across the UK. They are kept away from their families due to situations attributed to their disability and circumstances which are beyond their control. This could happen to anyone. Their stories were shared as part of raising awareness and hoping to make change.

And to finish April and exude Autism acceptance the wonderful Anna Kennedy shared her TED talk regarding autism being an inspiration.

 

 

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Looking back on 2016 – March

Spring had sprung in March with the vaguely warmer weather and the lighter afternoons if not evenings. We took advantage of the warmer weather and spent lots of time out walking, exporing nature and getting a spring back in our step after the long cold winter months.

Disability awareness was rife within the mainstream news. Stories involving a Mencap care worker using her clients wheelchair as a shopping basket, with them still in it, caused widespread disgust and calls for the worker to be sacked for her lack of compassion for her vulnerable client. Those more wise to the system started to call out the senior members of the companies, recognising that the lack of compassion for those that they are meant to work with and support is lacking – this led to a number of people being blocked and ignored on social media accounts, it is becoming more obvious that there is no accountability nor respect for disabled people and their families, a mindset that is filtered down from CEOs to the minimum wage care worker using her client as a rest from holding her shopping bags whilst having a crafty fag break. The system sucks.
There were also lots more high-profile media campaigns for children to be brought home. The daytime programme Good Morning supported the #freematthew campaign and steps were finally initiated for him to be allowed home. This opened up channels for other families who had been hushed by fear for their young people to speak out and the hashtag #kidsincrisis began to trend highlighting the vast amount of children being kept away from home, the he cost that this ensures and the lack of services and support for children to remain  home with their families. A scary time.

The Autistica charity ran a mainstream news reports that those with autism are at higher risk of dying young. I’m always very open with the children about the uncertainties of Dylan’s future and how things may be for him but this crushed me. How could I explain to them why their beautiful older brother is at risk of dying so early?

Because of his needs? His needs that they meet so perfectly themselves aged only 9 and 10 but a whole health system and infrastructure can fail at meeting?
Adults failing him?
Professionals failing him?

I couldn’t break their spirit and trust in the caring adult world so soon. So I talked over the telly until the report had finished. But this is real. This is Dylan’s future.

The spring time telly brought a range of autism based viewing, ‘Louis Theroux – extreme love ‘set in America showed some very different ways of managing behaviours. There was an acclaimed fictional BBC series ‘A word ‘which was set to follow a young family whose son is in the process of being diagnosed with autism and how the effects of this ripple with the wider family. This is what I got from what everyone else was saying about it. I didn’t watch it myself, I tried for the first maybe 10 minutes and then found it far too clean-cut and predictable – This doesn’t reflect my autism journey and I think that the expectation from the reviews was it was going to be life-like and reassuring to parent – whereas I found it condescending and unrealistic. One show I did love was BBCs Employable Me. Following a young man with autism who did incredibly well at a work experience so that he was finally able to be employed. The programme focuses on the skills and attributes that we all have – even those with autism – to be an employers dream. The speech at the end by Brett makes me cry every time. Beautiful.

All these external influences were reaffirming to our journey with Dylan and how we felt we needed to proceed to enable Dylan to be as functional as possible. Us having sole control over the direction of his education allowed us to leave more of the table based learning that is commonly found in schools and take a more practical direction which could promote Dylans independence and allow more opportunities for his future.

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