Persistance pays

​Haircuts again today. They seem to come back around so quickly. It’s never a great experience but today, after a long tiring day, it was well tolerated by all. 

Shining moment was when Dylan refused to budge until the grumpy barber acknowleged his iPad and P2G clearly saying ‘thankyou’ to him once he had finished. 
The embarrassed looking barber eventually gave him a smile and a ‘you’re welcome’ so we could finally leave. 😂😂😂

Good for you Dylan. 

You make yourself heard!


Loving a child who cannot speak

The never ending grief, the hope, the worrying. Its all here

In my dreams Dylan used to talk, really speak, I haven’t had a dream like that for months.

Original blog post taken from http://survivingadoption.blogspot.co.uk/2016/09/loving-child-who-cannot-speak.html?m=1


My son is not Rainman

Just finished the humorous and delightful book by John Williams. Having followed his blog for a year or two this book supplemented the blog posts and follows the developments of ‘Boy’ as he is affectionately known. Giving a fresh look to a family living with disability scenario that has been painted so many times by author parents of children growing up with autism.

Personally I don’t get to read much or for long at a time so I need a book that can enthral me from the moment I pick it up until I undoubtedly have to put it down five minutes later, maybe not getting to pick it back up until the following week for another five minute burst.

This book ticked all the boxes. Witty, sweet yet realistic without gloom and doom. 

A wonderful read. 🙂


Tear and Share

It’s been a personal mission to spend some 1-2-1 time with the children this year. Having had three babies within four years they have grown up together with similar needs and interests. 

As they are getting older the gaps are widening with both Josh and Grace overtaking Dylan on developmental milestones, ability to take on responsibilities and overall maturity. Both younger ones have their own developing needs so I thought I’d take them out individually for dinner one day a month. 

Josh came out with me last week. He enjoyed having protected time to tell me all about his new school, new friends and growing responsibilities of homework and the differing rules compared to primary school. We had a laugh and it was an upbeat evening.

Grace came for dinner tonight. Having some quiet time the two of us she quickly and unexpectedly appeared vulnerable and weepy. She talked about her fears for Dylan. Candidly. 

She talked about her fears about him not being accepted. Him being unfairly judged for his behaviours and overall her exhaustion through her self inflicted task of educating the world about her dashing, kind and delicate brother. 

Grace adores Dylan. 

She sees him. She gets him and she loves him. 

Her pain was not about Dylan and autism but about how she fears the rest of the world judging him because of it. 

Graces concern is the lack of opportunity for him in the world due to the ill perceived way that his behaviours cloud who he is and what he is capable of. Her despair resonated with me. 

There were no words. All I could do was hold her tight as she clung to me,  desperately trying to hide her tears from the rest of the restaurant. Embarrassed that her tightly closed pot of fear and emotions were publicly spilling over and she could not replace the lid.

We went and sat in the car. Grace feeling better now that she had shared the burden that she had carried for a long time and felt unable to discuss. But still the tears fell. She couldnt stop. I didn’t want her to; She can’t carry this around with her, all bottled up. Let it out. 

I can’t stop it. I feel there’s more tears

All I could do was hold her and reassure her that I understand, I feel the same. I relate. 

Driving home together I feel foolish. I had underestimated the amount of insight that Grace has. 
I can’t protect her from this. She has this simply because she cares so much. The bittersweet grief from loving someone who means so much but inturn exposes so much vulnerability. 

The internal fear. 

The anxiety. 

The worry. 

For goodness sake- shes only 9.
Once home I check that shes okay. 

So so‘ is the reply. 

I know the feeling.

Grace quickly snapped back to ‘happy Grace’ once we got home and I gained an insight into how much this tough yet delicate and caring soul can convincingly hide a multitude of emotions with ease. She said as I was tucking her into bed that she enjoyed her evening out but didn’t enjoy crying. She did agree to come out again in a few weeks but suggested we just get a burger and sit in the car incase she feels like she needs to cry again. 

And thats okay with me.


Back to school

This week was the first one back to school.  Within social media there appears to be two camps; the ‘yay the kids have gone!’ (parents whos children have gone back to school) camp and the ‘yay the kids have gone!’ from the home education community. Everyone seems glad the kids have gone back. I’m not. I miss ’em. They are both very excited about their new classes/school so I’m thankful for that. But I still miss them!

True, everywhere is busier in the summer holiday. With autism being taken into consideration, it can be harder to get out during the school holidays. But with Josh and Grace at home we have to make that effort, and its paid off.
They’ve all had a lovely, lazy, bonding 6 weeks; the way holidays should be. But now I’m sad to see the little ones go back to school.

Dylan has changed a lot in the holidays. Apart from growing a good couple of inches he now feels more like  a teenager. Upstairs frequently smells of spray deodorant and he has started applying wax to his hair. The intensity of having his siblings at home all the time has also encouraged Dylan’s voice way more than his Dad or I could. He will speak up. The social tricks of looking at someone and working to get their attention is emerging. He will be more forthcoming in saying ‘no’ or ‘finished’ in response to demands placed on him, A life skill I am so thankful for. He’s learned to ride a bike. He had generalised and expanded his shopping skills. His ability to wait for things and his acceptance when answered ‘no’ to a request has quadrupled. 

He has done so well.
But a new school year brings new challenges. This year Dylan will be working on his laundry skills to gain independence with this. He will further develop his use of money and gain the skill to reconise if he does or doesn’t have enough money to purchase something -a skill I still struggle with! He’ll be learning to use a microwave and we’re planning to develop his abilty to recognise items that are too hot and to handle them appropriately instead of the repeated touching that he does which leaves him so vulnerable to being burnt.

 And – the most daunting plan- we’re going to find him a buddy. Like a peer or mentor. Just someone his own age that he can hang out in McDonald’s with. We’re not totally sure how we’re going to find them but that’s our mission. And with a whole year to work on it, exciting times are ahead!


Get on your bike

Dylan and Josh both got bikes for their bithdays.

Dylan can’t ride a bike.

Even with stabilisers he doesn’t have the muscle tone in his legs to push the pedals.

He much prefers to catch a lift on Joshs tricknuts.


Overall Dylan has little coordination.

He will often stumble over nothing, trip over thin air and frequently his hands are too shaky to be able to write clearly.

Dylan also is severly affected with anxiety which quickly rises and whips up a frenzy of panic in him, blocking any learning, any attempts of pacification and is a huge barrier to his learning.

So to come downstairs this afternoon to see Grace gently guiding and encouraging Dylan to learn to ride his bike was simply, magical.

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