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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. 

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    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.

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    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

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    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!!! 🙂

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    A Christmas Wish #1

    This dog, this is what makes Christmas for Dylan.

    He doesn’t care for the Christmas lights or decorations, he’s not a fan of the noise or change of routine, Okay he likes the food but apart from that even the presents Dylan would be happy without. But this singing dog is his companion between late November and early January until we have to pack him away until th next year.

    When out Dylan will take the dog away, usually to sit in the stairway and play his merry little tune again and again and again and again and…. Yes, you get it 🙂

    I started an internet search for one and despite people’s best efforts to seek out alternatives I could not find where to buy a replacement. I contacted the shop we brought it from years ago; no longer stocking this item. I contacted the manufacturer; again no luck.

    Then thanks to an international Facebook search one was found…. by my cousin who lives only 5 miles away from us!

    Unbelievable, but he and his children kindly gave us their dog so that Dylan could have it and he is absolutely over the moon with it, Christmas has started!

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    “It’ll be lonely this Christmas…”

    ​Dylans favourite  ever Christmas decoration. This bad boy plays from the moment it is brought out of the loft early December until its packed back away in the new year. Dylan adores it and this has been the case since we brought it at Christmas time about 6 years ago. 

    It’s extremely overused, this poor pooch has needed new batteries and light repairs every year when brought out at Christmas time. As much is his constant uncheery tune of “It’ll be lonely this Christmas” by Mud (which I thought would never be missed) sadly this Christmas he has finally died a death and despite Dylans constant attempts there is no fixing this. 

    Does anyone know where one of these can be brought as a replacement? 
    Amazon and eBay are both out of stock. It was purchased in Homebase originally but was only used as one off stock on the particular year it was brought.

    Any ideas?

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    Three years on.

    ​Today the top picture came up on my Facebook memories. A lovely reminder of how far Dylan has come in such a short space of time.

    3 years ago Dylan independently asked for money using his iPad. Just money. You can see the simple layout of the screen and limited range of communication options.
    Fast forward three years and the progress and complexity of Dylans communication is evident. He can exercise a range of options and is developing an understanding of various transactions to be able to purchase items he needs/wants.

    The Proloquo2go has evolved with his growing needs and is being added to daily.
    Having started this AAC journey independently as parents without professional support we have relied mainly on the Internet and seeing a small amount of YouTube videos on the subject to learn how to make communication a reality for Dylan.
    Introducing AAC has by far been one of the most positive and life changing decisions we have ever made.
    Communication is a fundamental right and one that I so wish we explored and exercised much, much earlier.

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    Sugar rush

    Dylan has been enjoying his daily opportunities to go to the cafe and practicing his purchases but there is a slight concern that the golden choice is always Coke. Full fat, full sugar Coke.

    Working in health care I am incredibly aware about how choices we make now with our lifestyles, diet and hobbies can affect our health, wellbeing and develop our habits for life.

    Dylan likes all fizzy drinks but he will always choose the unhealthiest option. With his new focus on independent purchases Dylan is ordering his drinks without support which gives a free reign to buy whichever drink he prefers… yep, more Coke!

    In an effort to manage this we have made a social story much like the one used for not swimming straight after eating whilst on holiday seen here. When using pictello, the programme relays the story where Dylan is given information to explain why he needs to understand a certain situation. 

    The pictello programme is easy to use and the story took only a couple of minutes to make. We’ll show Dylan the story on arriving at the cafe so it’s fresh in his mind and see if it influences his choice of drink. 

    I know there’s artifical sweeteners in diet drinks and am not a fan of these either long term but we need to tackle this one little battle at a time. 

    Hopefully the social story will be the first step in moving away from chemical filled fizzy drinks! 🙂

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    Supercut 

    Haircut time again.

    Another smashing performance with even less support and prompting.
    For the first time both boys -and Dad- could have their haircuts at the same time instead of having to swap barbers or plan the best seat/barber/timing to enable Dylan to get through it. 

    Although we visit the same same regular barbers we went to their newly relocated shop around the corner from their usual one. The men there recognise that Dylan is different and the gentleman who cut his hair today requested specifically for the job of cutting Dylans hair. An older man he is confident and unfazed by Dylans often jerky mannerisms and growing anxiety. 

    Despite always giving Dylan the choice of whether he wants his hair cut or not he always confirms that he wants to have it done. I wouldn’t dream of forcing or encouraging him to do something so difficult for him publicly if he didn’t want to. Although Dylan asks for his hair to be cut he still finds it very difficult to tolerate and I think that he always will. Dylan vocally stims loudly throughout; the bright lights, the noise and the natural anxiety around haircuts is heightened but the staff there never make a big deal about it. They speak to Dylan directly and reassure him throughout whilst getting on with the job in hand swiftly and confidently. I’m sure this reassures Dylan and so when Dad and Josh were having their haircuts and the next barbers chair became free; 
    Dylan just went for it.