Retail therapy 

Wowsers this week’s been a whopper. 

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

“That’s great” we thought 

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

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

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

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

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


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

Special parents and special kids feels patronising and a bit judgemental.

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


Let me tell you what does.

He has an unbelievably wickedly accurate throwing aim. 

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

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

These are the bits of Dylan that make him special. 

Not his autism.

And us as parents are we special? Hell no! 

I struggle. 

I have a temper. 

I am tired.  

I am a human. 

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

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

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

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

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

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

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

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

I do not deserve to be considered special.


Up, up and away 

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

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

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

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

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

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

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


Throwback Thursday 

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

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

This was the post a year ago. 

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


Sunday Rituals

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

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

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

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

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

This boy makes me so proud.


Hear him Roar-y

Dylan makes noise all the time. 

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

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

*loud vocalisations* “Caaaa-rr”

Dad “Car Dylan? You want the car?”

Dylan “Yah bee”

Dad “Where do not want to go?”

Dylan “Non. Way way”

Dad “You want the car? To go where?”

Dylan “Non, non tang oo. Way way”

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

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