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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. 

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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 🙂

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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

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Proprioceptive Dysfunction: Blankets

Just out of interest I asked Josh and Grace;

‘Dylan always has a blanket on his head or his hood up or his head covered; do you know why?

Josh felt it was because the light might hurt Dylan’s eyes or maybe he wore it as he was worried about loud noises which might make him jump.

Grace felt that Dylan might be cold and so used it to keep warm.

I explained the insight that Dad and I got from a recent talk about Proprioceptive Dysfunction. For those not aware of the Proprioceptive sense it basically means to have an awareness of our own bodies in space and time.

– We know where our hands are without touching them.

– We know we are upright when standing and for example can easily gauge when there is a slope of step when we are walking. For this we can plan for the motion of adjusting to our environment as we are aware of where our bodies are in space.

Dylan has a dysfunction with this system. He will often appear to be “limp” and lethargic all the time despite being very active. He will frequently bump into objects and people accidentally and will trip and fall often, this is all due to him not being aware of his limbs or feeling able to maintain awareness of where he is in relation to himself or anywhere else. All elements of this affect his confidence and ability to integrate with others.

To explain this to Josh and Grace I used the example of our faces and heads.

‘How do we know we have a nose or a head on our neck without reaching up sand feeling it? – We just do, because we have this ability to sense it. Dylan doesn’t have this so much so maybe having a blanket over it helps him feel grounded and safe, so he knows where his head is.’

Both Josh and Grace looked at me thoughtfully, smiled and accepted it as a little nugget of Dylan wisdom. 

Another little step of understanding.

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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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National Stress Awareness Day 2016

How can caring affect families?

When a child is diagnosed with a disability the amount of information and support offered to the family varies. Families can feel very alone and unsure about how to support their child, or what will happen in the future. Seeing challenging behaviour appear in a young child can be upsetting and confusing. There is a lot to learn and getting professional help and specialist services can be difficult.

Families are often socially isolated and can be left out of family events, activities and places in the local community because of their family member’s behaviour. Family carers say they have feelings like stress, frustration, anger, guilt, shame and loneliness, or feel that no-one understands what they are going through. Feeling low or stressed can sometimes lead to mental health problems like depression or anxiety, that need medical help. Relationships break down more often for people whose son or daughter’s behaviour challenges. Finding support and time alone to relax is really important, but can be hard. Meeting other parents is really helpful to get support and to share ideas of what has helped.

Eating well, exercising and getting enough sleep can be tough when your family member’s needs come first, especially if they have sleep problems. Families can plan their time to do activities that are good for all the family and be healthy together.

Parents might not be able to work and extra money is spent if things get broken or equipment and changes are needed at home. There are benefits, direct payments and grants that families might be entitled to.

Taken from the Challenging Behaviour Foundation Website http://www.challengingbehaviour.org.uk

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Ha-ha-happy Halloween!

Halloween. 

Not one of Dylans favourite celebrations probably due to the lack of preparation. The decorations go up that day and come down the same day. The costumes are uncomfortable and with it being a school/work day its usually all a bit rushed. 

The golden rules are broken and suddenly everyones out knocking on doors and taking sweets from strangers. 

I can see that it must appear bizarre and very unsettling.

So this year we did things a bit low key. Dylan wanted to dress up like the other two but instead of going out we drove them round to my mums for a hot chocolate and a handful of mini chocolates each.


And for the last day in October, and the final day of AAC awareness month, we set it up so that Dylan could treat us to some Halloween jokes.

Happy Halloween all 🙂