0

Reading challenge

Dylan’s been going to the library since he was tiny. It’s always been a place full of anxiety.

Too quiet, too much attention to behaviours and too many tall aisles to get lost down.

The younger two have always seen the library of a place of learning, knowledge and information. It’s strange how two people can see the same thing so differently.

Dimensions have a new campaign to make libraries ‘autism friendly’. Which is an excellent idea.

Every year the library do a reading challenge where a child endeavours to read six books of their choosing within the six weeks summer holiday. After reading each book they visit the librarian seated within a speacial little nook to discuss the highs, lows and lessons learnt from their chosen read.

Josh and Grace have repeatedly year after year completed the reading challenge but this year is Dylans first year. It took a while for Dylan to understand what the librarian was asking him of the book but with time and gent lesupport from Dad he was able to complete the first element of his reading challenge by answering the librarians questions.

Reading challenge 2017; Its different but its do-able.

 

Well done Dylan 🙂

Advertisements
0

Connecting

Sometimes nuggets of compassion from strangers catches you right in the feels. 

It could be a throwaway comment, a glance and a smile or a gentle nod of ‘I get you’ before the moment passes and the crossing of paths continue. 
Although few and far between these moments can give you a spur onwards when tiring from the ongoing effort of managing family life and the relentless need for continuity while offering encouragement during noisy, disruptive times when it can all feel a bit too much.

A look of support, a kind word or just ‘seeing us’  when out as a family can give us enough of a boost that sometimes we can feel supported without even interacting with anyone.

The truth is that the differences of having a child with disabilities to a family is immense and can make some of the most basic public tasks feel impossible. 
While away at the beach Dylan screamed, cackled and splashed, immersed in his deep deep joy of the sea and finding a common ground enjoying the warm water with his siblings.
 Josh came over to me on the waters edge and whispered to me “Mum, look; everyone’s looking” I turned to see everyone sitting upright on their lounges watching Dylans show. Josh and I smiled to each other as he rushed off to go back to play with his sister and noisy brother. 
Those watching may have been judging his behaviour or disapproving of the disruption to their quiet sunbathing but it felt to me as if they were enjoying watching them have fun as much as I was.

To those who spread little gestures of kindness, thankyou. Thankyou for recognising and spreading understanding for families like mine. 

Acceptance feels beautiful. Thankyou x

0

Crash, mugum and other wonders 

Holidays are great for getting away from everyday life but also for spending non stop time with one another. Some families may not like this too much but as we hardly spend any time all together at home for us to be on holiday and have 24/7 in each others company is bliss!

Being away together also gives us time needed to fully embrace Dylan’s iPad use. He is supported to use it for every interaction both with us and new people. We can model words for him and add vocabulary to it as it’s required. 

In addition to this Dylan’s becoming proficient at adding his own words too. He can independently use the iPad to take a photo of an item or person that’s not in his vocab list and then use the drop down keyboard to type the word in. Dylan struggles with the spellings in this bit but is able to write enough for us to be able to understand and type the correct spelling for him. Self directed pictures and typing is a useful technique we are encouraging to enable Dylan to generate his own working vocabulary. This week already we have had

‘magum’ for Magnum icelolly 

‘hannk’ for hammock and 

‘crash’ for a computer game which he remembered both the location of and correct spelling for since our visit here last year.

This boy astounds me.

0

Holding hands and praying for a green man 

Roads.

Difficult to navigate with lots going on, traffic in both directions, potential danger everywhere AND a journey to complete. 

Dylan had been working hard at home on crossing the road and adhering to road safety in an effort to increase independence with slow but steady progress.

I can walk along the pavements with him and I don’t need to request that he holds hands with me anymore. He often just links arms with me for stability, Dylan tires so easily when walking, and knows when we approach the kerb that he needs to hold hands, stop at the edge of the road and await either verbal instruction or discussion about our surroundings and how we can complete this crossing safely. 

Now we are in Greece the rules have changed. We have a 20 minute walk from the hotel to the beach. The traffic is fast and flows on the opposite side of the road. There is a large volume of noisy older cars and scooters and an absence of pavements. There is literally a fainted partially painted line approximately half a meter from the edge of the road. This indicates where the walkway finishes and the busy road starts. The difference between Greek and UK roads is huge.

We have visited Greece for our holidays for the last 4 years so we are accustomed to the differences. Dylan manages this well usually. 

This time round with the teenage defiance, agitation brought on by the blistering heat and non stop sweaty hands Dylan refuses to hold hands; absolutely point blank at times. It’s exasperating and terrifying just like when he was 6 or 7 and we could compromise by having him hold onto Graces pushchair. Today we have nothing but empty pleas and trying to hurry the situation along, frantically trying to avoid a catastrophe.

Not having the safety net of Graces pushchair I’m increasingly panicking until Josh calmly steps in. 

“Mum, let me try. 

C’mon Dylan lets get out the sun”.

And breathe. 

Thanks Josh x

0

The next generation

A couple of weeks ago Grace had some friends round.

We don’t often have people over, historically it has been overwhelming for Dylan and secretly Dad and I have always felt a bit vulnerable about the sometimes innocent cruelty of kids to one another, especially to those who are different or misunderstood.

Don’t get me wrong; we have never had any issues. Josh and Graces friends have grown up with Dylan. They see him in the playground at pick up and drop off times and will often innocently ask valid questions to the younger two about Dylan. 

Children are naturally inquisitive and its important to ask about things you don’t know or understand. Ultimately its how people learn and I fully encourage this. However I am also aware of the burden to the little ones being Dylan’s advocate to the big wide world. Home should be that little bit of sanctuary where they don’t have to protect or defend him.

But the wee ones are growing up and have needs themselves too so before the half term break we agreed and had a small gaggle of Graces friends over for a picnic and a play.

Well, what a beautiful set of young souls. They played both with and around Dylan; involving him when he wished and accepting when he didn’t. Communication was no issue and his flicking, flapping and straw knawing was totally overlooked. He sat in the garden and ate with them as pleased as punch.

Faith in humanity and hope for the future restored. 

0

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 🙂

0

16.1.53- 12.02.08

Today would have been my Dads 64th birthday.

A simple man, we had a complex relationship when I was growing up; primarily due to me and my difficult ways; which seemed to smooth out once I settled down and had Dylan. As a family we would visit my Dad and his family weekly.
In his own way my Dad adored Dylan. Not at all a ‘baby’ man, he would hold Dylan if asked but was much more comfortable interacting from afar while Dylan was in my stepmums arms by making silly faces and blowing raspberry noises in his direction.
As time went on Dylans Dad and I were becoming subtly alarmed at the whispers from professionals about Dylan’s abnormal development; primarily his lack of developing speech.

However my Dad was full of reassurance and would tell us about an extended family member who ‘didn’t speak a word until he was seven years old, now he’s absolutely fine’.
I’ll never forget having to ring him and my stepmum on the evening of Dylans clinic appointment to confirm Dylans official diagnosis of autism.

I was unable to back this news up with any treatment plans or words of comfort to them as that afternoon we were literally given the news at the clinic and sent on our way. After breaking the news and biting back my tears my dear Dad responded with ‘Well, don’t worry. It doesn’t change anything does it?’

And that was just it. For him nothing changed. For the rest of my Dad’s life he never asked about Dylans appointments, assessments or progress. He continued to pull faces at Dylan whenever he would glance at him. He would make silly noises and play peekaboo with Dylans beloved muslin cloth.

It didn’t matter.

The diagnosis didn’t matter.

Nothing changed.

I appreciate that he didn’t ask about any assessments, not because he didn’t care but because of his need to keep things straightforward.

-Don’t rock the boat.

-Don’t worry about things you can’t do anything about.

I get that, I really do.

I often wonder what their relationship would be like now; Dylan would have really rocked my Dads boat.

As time went on there was no hiding the extent of Dylans disability and when this involves a loved one it initally comes with shock and heartbreak.  I wonder how my Dad would have coped with that and the ripple effect that managing autism had had on all our our close family over recent years.

My Dad became ill with cancer when Dylan was 4 and he died 18 months after. Dylan was still very vacant throughout this time and totally nonverbal, he was lost.

But still my Dad would speak to him, trying to entice him to echo his words, even if it was

‘Dylan… pub?’

Nope. Dylan wouldn’t even look at him. Totally unresponsive to his name, with no interest in people or things Dylan was just lost in his own stimming world.

But still my Dad tried, on every single visit, to see if Dylan would copy his speech.

Looking back I really appreciate that; the trying, the effort.

See there was no fakeness with my Dad. If he couldn’t be bothered with something he simply wouldn’t bother. But with Dylan he bothered, he always bothered.

Although he was never a lover of modern technology (he could only nearly work a mobile phone) I like to think that my Dad would embrace talking to Dylan with his iPad.

Hell now, Dylan could happily repeat ‘pub’ back to him and they could skip off to the local for a bag of crisps and a coke. Actually I could easily see that being a regular iPad request of Dylans if my Dad was still around!

Having looked back I painfully realise that Dylan would probably now dote on my Dad just as much as he doted on Dylan back then. By now I imagine their bond would be strong; both undemanding and comfortable in each others silence.

The realisation of this lost relationship makes the sadness even stronger.

Both sadness for me at the loss of my Dad and sadness for Dylan at the missed opportunity to have another loyal member to his small team of support.

Happy birthday Dad,  you are dearly missed xxx