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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!

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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
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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!

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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

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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.

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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

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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.