0

Happy birthday Mister!

Well. 

Dylan’s 14.

Not sure what I have to say about that. Apart from

Where’s the time gone??!

This year’s birthday Dylan definitely understood more. He looked out for his name on envelopes and opened those addressed to him and enjoyed placing his cards out on the unit for all to see. 

He looked through the various home shopping catalogues we have and asked for many many items for his birthday (shame we were looking for ideas for Joshua birthday at the time but hey-ho! What a development of awareness!). 

He chose his birthday cake and planned his birthday meal out. He has genuinely seemed excited about it.

First thing this morning Josh and Grace performed a ‘chicken nuggets’ song and made up a dance show for him which finished with the bringing out of a platter of all of the chicken nuggets in the house cooked for Dylan to eat for his breakfast. The whole thing planned and executed totally independently by the younger ones. Dads face was a picture on the presentation of the nuggets and Dylan was in his element!

Presents are always tricky and despite Dylan’s interest in the shopping catalogues it was tricky to find him something suitable as a gift. 

Dylan’s main present from us was a classic games console and a tv for his room. Where the boys shared a room and tv before we moved Josh has inherited since they have had separate rooms. Now Dylan has his own tv we’ve hardly seen him. He loves the retro games and plays them for hours, and he plays them well!

There’s something very satisfying about having your strapping son enjoying games that you played when you were younger than he is now.

Happy birthday boy x

Advertisements
0

Best foot forward

Dylan went to the doctors today. Thankfully as a healthy child he doesn’t see the GP much. At all.
But recently I’ve noticed small bones protruding from just above the arches of his feet. The bumps are rubbing on his shoes resulting in him having small pressure sores developing. Dylan’s having to wear socks in the current stifling heat to avoid the skin there breaking down further. 

Although Dylan lets me look and check these lumps without complaining, his body language tells me it hurts. He flaps violently when he thinks they are going to be touched, his whole body stiffening with anxiety until he is reassured thst these sensitive areas won’t be meddled with.

We had no option but to visit the GP. We talked this through with Dylan who appeared to be okay and understand the basic process we were explaining to him. 

Appointment time came and went but Dylan was a superstar waiting patiently in the busy waiting room for his appointment. Finally we were called into the GP office Dylan kept his anxiety under control and allowed the doctor to look and feel the bony protrusions. I explained to the doctor they don’t look right and seem sore although Dylan’s communication difficulties make this really hard for him to relay to us.

‘Its all fine ‘

 doc said as if I was being a bit silly bringing my concerns. He went on…

‘We all have different feet, as long as he is exercising plenty he’ll be fine. 

Keep him moving”

That’s it. Consultation over. 4 minutes.

Dissatisfied with the advice from the GP we leave politely and get in the car so I can contact my default doctor for advice; 

Dr Google: search term “painful bump on side of foot”

First result of many all saying the same thing is this:

Seems Dylan is fitting the descriptor for a diagnosis of having Accessory Navicular Bone. 

Side effects of which are possible fractures, loss of stability of joints, development of ‘flat feet’, loss of mobility and pain which “gradually becomes worse, and… is aggravated by activity, walking, etc.” Resulting in Accessory Navucular Syndrome which can be debilitating and require a range of treatments.

Seems my inital discontent at the advice of ‘exercising plenty’ was not misplaced and indeed will not remedy this issue. 

I’m so mad! 

  1. Dylan has his diagnosis of autism in bold on his medical notes on the computer screen. 
  2. I told the doctor clearly that Dylan can’t tell us if he’s hurting. 
  3. We never go to the doctor but had presented for this ailment so it clearly is a concern and we were nothing short of fobbed off. 

First thing tomorrow; I’m self referring to a podiatrist for a proper examination for Dylan and some advice for me. Something I think I probably should have done in the first place. 

Grrr!

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 🙂

Aside
0

We’re all for trying new things, Dylan included. So when dinners involving a new item Dylan likes to check it before it’s dished up into his plate. Actually as soon as the serving spoons are out Dylan’s hovering around the kitchen checking out what’s going on.

Tonight’s dinner involved cous cous. Moroccan cous cous. Now Dylan likes rice and pasta and he certainly likes spice but in this combination. Not heard of before.

Dylan’s flapping around the kitchen so I get a small spoon and offer him some from the pan. Dylan sniffs everything before it goes into his mouth. Cous cous passes the sniff test and he goes in to take the while lot off the spoon. No gagging or grimacing Dylan swallows the lot. I go to put a spoon of it into his plate.

‘Non ‘ 

‘No? You don’t want any more?’ 

‘Non.  No danoo’  (No thankyou) shaking his head. 

‘Oh okay’ 

It’s no issue if he doesn’t want any. I’m just glad he tried it. Dylan’s still flapping in the kitchen. Then within ten seconds…

‘Yah bee’ pointing to the pan of food.

‘Yes? You want some?’

‘Yah bee’.

At home this perceived indecision isn’t a problem but it can take 5-10 seconds for Dylan to process the a relatively closed question and produce his correct answer. I think it’s his anxiety which is based on him knowing that an answer is expected which almost makes him knee jerk into a response be it correct or otherwise to avoid being wrong. Not having this delay acknowleged when out in public can result in Dylan’s verbal communication being futile and causing him further anxiety. Having the iPad as the first mode of communication when out produces more of a delay than when Dylan is speaking verbally. However if Dylan’s  speech is understood but its not his correct response then it can be problematic.

More so I’m understanding that complex communication issues and disordered speech sounds are Dylan’s greatest difficulties.

Oh and he ate the lot!

0

What’s in a day?

It’s Dylan’s birthday next Saturday. Since Joshuas birthday last week all talk has been preparing Dylan for it being his birthday next.

He has picked what presents he would like, what he would like to eat, which restaurant he would like to dine at. Hell, he’s even picked his birthday cake. We’re ready. 

Shame is that in all the preparations Dylan has overlooked the fact that it’s his birthday NEXT Saturday and not actually today. 

Dylan’s having none of this ‘we’ll do it next week’ business and is still sitting on his bed fully clothed with his coat and shoes on waiting to go out for his birthday dinner when it’s really late at night and he really should be ready for bed. 

Only another 7 days to go…

0

Dear seat 12a

You turn around in the luggage queue and we briefly made eye contact. That was just before another coach load of 18-30 club holidaymakers spilled into the already busy and humid airport ready for their late night flight back home. We broke eye contact as I helped Josh usher Dylan closer into the protective circle that we were enclosing him in, away from the bustle and the noise.

The queue moved slowly and Dylan being tired and disorientated wants to wander out of our protective hold. He wants to sit down and rest his weary legs. The chairs are on the other side of the packed waiting room; Fine for a teenager usually but Dylan’s bright red ear defenders suggest to you that Dylan is not a typical teenager. Again you turn and look and I smile as I meet your glare. You break my eye contact without response and turn back to your conversation with your companion.

The waiting to travel is always long and appears even more so when homeward bound in the middle of the night. The children are slow and tired. The flight is practically boarded by the time we find our seats. I see our seats are directly in front of yours.

The flight home is long and uncomfortable. The babble of aisles of rowdy boys quickly quieten as they all fall asleep. I know Dylan rocked on his chair and that disturbed you resting you head on your tray. I know that he giggled at times and that you heard him loudly ‘shuuush’ in response to my visual request to him to sit quietly. See, he was so tired and so anxious, it was too quiet on the plane and he can’t sleep with the light on; you were reading by your overhead light for the first 2 hours of the flight and he doesn’t understand that he should be trying to sleep even though his seat was illuminated by your bright reading light. By the time you decided to switch your light off and rest your eyes Dylan had passed the stage of sleeping and we were going to remain awake, regardless of how tired he was.

I promise you he did his best to be quiet. He giggles and rocks when he is nervous and I desperately tried to quietly reassure him so as not to over stimulate his already highly anxious state.

Please believe me when I say he did so well, despite him hearing your mumbled comments and disgruntled huffs at him moving the tray on the back of his seat with his rocking. He didn’t respond or allow you to heighten his anxiety further.

I did my best to reassure him he was doing great when the unkind or unhelpful comments you made about him smelling were made loud enough for him and others around us to hear.

I was so relieved and so proud when those aeroplane wheels hit the tarmac back at Gatwick; Proud of Dylan’s resilience and relieved that you and I could get on with our separate journeys.  I praised Dylan openly and loudly in your presence. He did do so, so well, he did amazingly at self soothing and calming himself to be able to get through the three hour flight. The work for Dylan to manage that took more effort and drew on lessons which have been learned over many painful hours to formulate a smooth and socially expectable journey. More time and effort invested that you would ever realise or probably ever appreciate.

If you come away from three hours sitting behind Dylan in an enclosed space and all you have to complain about is the rocking of the seat in front of you – which is only affecting you because you are leaning on his seat – then I am glad. Dylan worked so hard and the journey went so well that we are not going to let you or your unacceptable intolerant ways ruin it for us.

In fact I’m glad he blew off at you.

Oh and I hope you lost your luggage.. 🙂

wp-image-1829318089

Shhhhhhh!!!