0

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.

Image may contain: 3 people, sky and outdoor

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.

No automatic alt text available.

Image may contain: one or more people, people standing and outdoor

 

 

 

Advertisements
0

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.

Image result for equality meme

Image may contain: stadium

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 🙂

Image result for autism awareness campaign uk

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.

Image result for london marathon caudwell children

 

 

 

 

 

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.

 

 

0

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.

Image may contain: 1 person, smiling

0

Looking back on 2016 – February

February started with a trip to Nuffield Speech Centre to have Dylan assessed for verbal dyspraxia. Despite him meeting the criteria for diagnosis of this complex condition apparently his diagnosis of autism supercedes this and they could not formally give him a confirmed diagnosis. Advice given from the consultant was to continue with our private speech therapy as this is helping and actually thats all they would suggest with a diagnosis anyway. What a waste of time.

Positives from the episode (and I am a believer that there’s a positive to every situation!)

  1. Dylan finally successfully had his hearing assessed and all is fine. Last test (age 3) was failure due to insensitive stroppy audiologist and not been reattempted.
  2. We went on the train which Dylan handled fine. We had to wait a long time in the hospital but Dylan managed. It was a testing time for both of us but we did it and we survived. Go us! 🙂
  3. Advice given was what we are already doing so no time lost. Looking back it was a reaffirming visit, even if we didn’t get the confirmation of disability we were looking for.

The month of February was peppered with high profile cases of children with autism and additional needs being taken from their homes and being placed in mental health assessment centres miles from their homes and their families. Lots of these children were being reported in the media as being brought home but through socal media I know of a lot who weren’t and still aren’t.

It’s a worry as a parent of a child approaching his teens. Puberty, carer breakdown, professionals becoming involved for whatever reason. Appearing to not cope, to need help. There was a real pressure this month to feel like we’re getting Dylan to being as stable and resilient as he can be as soon as possible.

On a happier note Sam the barista went viral and reminded us that people with autism can have jobs, opportunities and be role models in the right environment and with the right support. 

That felt good 🙂

    Feb 20th 2016

    ​**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 🙂

    ^^My Facebook post from 20th Feb 2016. 

    February was also the first month that Dylan began to fuse together his skills to be able to make more independent interactions in the big wide world.

     Although the whole process made him incredibly anxious the end result was a huge motivator for him and we soon realised that this was going to need a lot of practice to make this bearable and positive for him.

    I had a minor op on my leg in February and Dylan gave me a real insight into his understanding.  To Dylan I didn’t explain that I was having an operation. I didn’t even think to explain to him that I wouldn’t be at work for a while or that things would be a bit different, I simply thought he wouldn’t notice. But without doubt from the moment I got home from hospital Dylan was unbelievably careful around me. I hadn’t thought to explain as I thought he wouldn’t understand nor be interested when, on day 7 and my bandages came off, the family liked to have a stare and comment on my very attractive legs. **warning – picture on its way**

    Everyone else left for me to get changed when Dylan who had been down stairs on his own throughout everyone elses racket came into the doorway of my room. He looked me in the eye, walked towards me and then dropped to his knees peering around at the sore welts at the back of my leg. He gently put a finger on one of the bits of tape before getting back up and slowly walking out of the room. 


    It dawned on me then that he was just as curious as everyone else was about what was going on but waited until everyone else’s noise and commotion calmed before coming and exploring himself. 

    This little moment will stay with me forever. I see now that I had overlooked Dylan at what was a unpredictable and stressful time for us all but Dylan’s response towards me was gentle and concerned and even reassuring. I’ll never overlook him again as I did during this time.
    I’m sorry Dylan. 

    0

    Looking back on 2016- January 

    This blog didn’t even exist in January. Dylan was being home schooled and things had been moving ahead steadily for the last few years. The ABA had always focused on the structure and routine of rote and academic learning but as the year turned into 2016 there was a shift within Dylan that wasnt noted at the time but looking back,  I can see it clearly now.

    Dylan began to grow in confidence at the beginning of the year. He adored his 2015 Christmas present of a handheld hoover and used it as his domestic skills developed with supported cooking and food preparation. He began piecing together the cause and effect of real life. You want to eat you have to cook.You make a mess you clean it up. Little by little joins were being made between singly taught elements or concepts.

    Late in January as a family we attended the autism friendly session of Charlie and the Chocolate Factory. Now this is one of my all time favourite books and films I was really excited for the children to be able to see it at the theatre.  It would not have been possible to see this without it being a relaxed screening. As we predicted Dylan was very jumpy and anxious throughout the show making loud stimming, hummy noises and he kept needing to stand up out of his chair. It would have been too stressful to take him to a regular theatre trip where we would have been concerned that we would have had complaints from other theatre-goers. Here though noone cared. It was a fantastic opportunity which was especially enjoyed by Josh and Grace.

    0

    Christmas 2016.

    It’s been a wonderful day on so many levels. We have been a family. We have looked after one another, focused on one another and been there to support and enjoy one another.  A real family Christmas, it’s been great. 

    But it’s also been a time for reflection. Now this is not a sad post but one to remind of how fragile we all are, how every moment should be relished and enjoyed and how we should focus on what’s really important and not get lost in the smaller issues.

    I’m holding my little ones close tonight when thinking of the international terror that’s been occurring in recent months. Feeling lucky that I am born where I am rather than a war-torn climate. I’m feeling thankful that I am loved and that both myself and my loved ones are healthy.

    I am thankful for my steely determined views and that I am surrounded by people who believe in me, take a chance and allow me to act on my beliefs and hopes. 

    I am reminded that this time last year things were so different. For Dylan theres been so much progress made, developments, friendships blossoming. But also in wider circles unexpected deaths, changes in health and some relationships shattered. We don’t know what’s around the corner; none of us do. That’s why it’s so important to live in the moment. Take a chance, right here and now and make it matter.

    Wishing everyone a merry and peaceful Christmas  xxx

    0

    A Christmas Wish #2

    I wrote Dylan’s unobtainable impossible Christmas list of wants here in November. It consists of all of those items which are not deemed as toys or gadgets that would usually be asked for or be considered age appropriate but the Dylan really likes or shows an interest in. So many things that aren’t suitable to ask for, would be too difficult to source or simply don’t exist but that would really make his day.

    I mentioned this list to my Mum in  a very tongue in check phone conversation about how difficult its getting to buy Christmas and birthday gifts for all the children now they are getting older, let alone Dylan who has such differing needs and interests.

    And Christmas day Dylan unwrapped this:

    Number 3 – Success!!! 🙂