Taxing times

Its been a year since restrictions began.

We started early, pulling Dylan and his siblings out of school and college, aware that the impact that COVID could have on us could be devastating.

We’ve hidden away for months and now as the lockdown slowly lifts we are all a year older. Dylans rapidly approaching 18, the end of college, the end of children’s services and embarking on adult support systems.

So what better way to celebrate the impending leap to adulthood, than to develop independence on his travel to college. For the next three months before he leaves college Dylan will be arriving by taxi transfer with 4 of his local peers.

No idea who they are he’ll be travelling with, who the driver is, or if any of this will be okay but hey, if there’s one thing the pandemic has taught us is that we can control it all and regardless, time will keep pushing on.

So this was yesterday morning, waiting for his collection. He wanted to go, the cab arrived and he went. He was fine.

He arrived back home that afternoon, jumped out the taxi and skipped into the house. Transition made. Hes fine.

I however, may need a bit more time to adjust and relax about it.

But it will come, with time.



Strange times are upon us.

Dylan has been sheltered away from the corona virus which is dominating the news all over the world for the last 10 weeks. We have explained that people can get sick which is why we are staying in and for the most part this has been unquestioned. With time indoors, no routine, no college; Dylan has amused himself with lay ins, watching telly and generally dossing about. Hes in his element.

Today Dylan needed to go out. He missed some vaccinations when out of school a couple of years ago and earlier this week I rang to get them booked in. The change of workflow at the doctors surgery meant a swift appointment was made with just enough time for me to have Dylan prepped for his injection.

If Dylan were to get corona virus it would be very difficult to manage, he is unable to socially distance and the symptoms of such a virus would be so frightening for him that it would be difficult for him to understand and potentially impossible for us to help him manage. Hospital treatment is difficult for Dylan to access anyway but even more so in these difficult times. Avoiding the virus entirely is the best option.

So to support this we taught Dylan to wear a mask. Face masks are sweaty and uncomfortable at the best of times but I believe will soon becoming a necessity when in public areas. In preparation for this Dylan has learnt to put on and take off his mask safely, whilst not touching his face. He is able to tolerate wearing it for long enough to go out for a short amount of time and he can tell us when he wants to take it off rather than just ripping it off, which would leave him uncovered and vulnerable.

Today was the first day we’ve needed to test the mask tolerance level.

So I thought it was only 1 injection, my bad, it was actually two. But Dylan actually did really well. When the nurse explained to him what was going to happen and asked him if that was okay he gave an honest ‘Non!’ But there was no protest and he took the jabs well. She even gave him a sticker at the end which he insisted on sticking to himself.

And the mask stayed on throughout, right until we got in the car and I modelled that it was now safe for him to take off.

All in all; a successful trip out.


Sniffles and struggles

Dylan has a cold. A normal, blocked nose, bit of a cough type of cold. It’s usual for the time of year to have a sniffle or two. Easily solved; some paracetamol, hot honey and lemon and ride it out. It’ll pass.

Dylan doesn’t get it. He simply can’t understand why he can’t breathe through his nose and is protesting by not breathing until he runs out of puff and finally makes a huge gasp through his mouth that keeps him going.

Then we resume the mouth closed and the forced nasal breathing continues, badly. Until we have a massive mouth gasp again.

Dylans scared, I can tell by his whimpering and persistence. Trying to reassure him I tell him it will be okay, “breath with your mouth open. Try and get some rest.”

‘No’ he tells me. After all he always breathes through his nose and for him now should be no different. He strains as he continues to try and force the breath in and out of his swollen nostrils.

Its going to be a long night.


Mothers Day

We went to the supermarket yesterday. Usual weekly shop but the little ones wanted to get some last minute bits for Mothers day. Both Josh and Grace excitedly asked to go off together to pick up some bits. We let them disappear off together into the busy shop whilst Dad, Dylan and I carried on with the usual food shop.

Seconds later Dylan became a bit agitated and pulled gently on my arm.

“Ah, ah” he whispers close to my face.

Dylan will often whisper when he tries to talk to us. Over the last few months he’s really rebelled against using his iPad and the difficulty we have in understand him verbally has changed his communication with us to little more than a whisper. It’s as if he’s aware that we find his pronunciation difficult to understand and this had made him too self conscious to speak up.

I don’t know what ‘ah’ is but try and work with what I know,

“‘Ah’? do you mean, ‘bar’?”

“Non. Ah”

“Okay, not bar. What about ‘car’? Do you want to go back to the car?”

“Non. Ah”.

We get Dad involved, “Tell Dad?”

We get Dads attention. Dylan says again, “Ah!”

Dad, like me, doesn’t know what Dylans trying to say and we both look blankly at Dylan.

Dylan shakes his head. “Non” he says quietly to himself, frustrated at not being understood. Not angry but disheartened and on the verge of giving up.

His ‘Non’ for no is almost a verbal shrug; a ‘Don’t worry about it’ gesture.

‘Can you write it?’ I ask as I get out the text app on my phone as a last desperate attempt to encourage Dylans efforts. It’s not ideal but the familiar qwerty keyboard pops up on the screen.

“Maybe try and write it Dylan?”

Gingerly Dylan picks up my hand and uses my finger to tap out the letters. Some are in error and he hits the delete button until he finds the letters he wants. C…A….R…D. Card.


“Yah, bee” (yes, please)

“Do you want to buy a card?”

“Yah, bee”

“A mothers day card, for mum, like Josh and Grace?”

“Yah bee”

And here it is, the first time ever I have known Dylan to independently want to buy me a card.

Picked out by himself and then written in all by himself. So proud!

As we leave to pay, I ask Dylan,

“Are you happy now? Is that what you wanted?”

“Yah, bee”

I love being this boys’ Mum.


6 months

It’s been six months since I’ve written. Life has been busy, and not so kind, but we’re through the other side now.

Dylan is doing fabulously. Excelling at college two days a week, not so much iPad talking but he is 15; its not easy to talk at this age regardless of anything else going on.

Edit: I started this post 6 weeks ago and I have only just got around to updating and posting it. Health issues have ensured I have been either too fatigued or time poor to be able to regularly record the leaps and bounds of Dylans day to day life.

However, with April tomorrow signalling the start of Autism awareness month, it seems only fitting that I pull my finger out and get back to writing and recording Dylans progress.


The personal cost of paying it forward

I love the idea of paying it forward, a kind gesture where you leave a money behind the till for the next persons coffee, where someone pays for another’s meal on leaving a restaurant, a good turn where a gesture makes to payee feel good and benefits the payer with good karma; in time the payer will receive, by fate, their own good deed from another.

That’s the idea of paying it forward, I’ve always liked it and would encourage others to do it however, and as I learnt last night there are some factors which should be taken into consideration.

Some background info; Wednesday evening every week I come home from work and take a child out, on their own, to spend some quality time. Nothing deep and meaningful but just some 1-2-1 time. I’ve been doing it 2 years and each child takes turns. This week was Dylan’s turn.

Dylan has variety with his choices, it was Pizza Hut for many weeks, then Nandos but more recently he has chosen the local Beefeater restaurant. He asks about it for at least a fortnight prior to it being his week out, reeling off in his IPad his choice; paprika chicken, garlic bread, chunky chips, peas, cup, ice, Pepsi, brownie, ice-cream. He is practicing his order over and over again so we encourage him to make it into a sentence and he adds ‘and’ between each label. It’s a motivating situation for him. He adores going out to eat.

Tables booked for 7pm and at 6.50 on our way out the door Dylan’s iPad battery is dead, Dang! Grabbing the backup iPad – also dead, double dang! Right this is fine; we can work through it as we have many times before, got some paper and a pen, no problem.

We get to the restaurant and its quite busy but that’s fine, Dylan’s excited and gently humming to himself, he’s skipping a bit but nothing too major and he’s happy so its fine, he’s in a good place.

As we are waiting to get seated I see there’s a sign saying that there is a problem with the restaurant supplier and so THERES NO CHICKEN. Arghhh, I just notice this as the server comes over to seat us, no time to prepare Dylan we grab our menus and have a seat.

As we sit down I prepare Dylan

‘Dylan there’s no chicken today, you’ll have to have something else, you can have a burger, steak, ribs…’

‘Durder’ was his swift reply.

We get the menu and copying the item from the menu he writes his request. No issue.








Halfway through writing his lengthy order the pen runs out, I show him how to shake it gently to get the ink flowing again, Dylan takes the pen off me and when it starts slowing down again he repeats the shaking to get it working. No issue.

We order and then Dylan needs the toilet, he hates hand dryers and obviously I forgot his radar key so we have to go into the ladies – cue lots of hand dryers

– Still, no issue.

The food arrives, in my haste to support Dylan’s order I overlooked the fact it comes smothered in cheese – DYLAN CAN’T STAND CHEESE. He opens the burger bun, gives it a dirty look and hands me a fork whilst requesting help to get rid of the cheese ‘Hup’. I clear the cheese. No issue.

We eat, I chat a bit, it’s a normal night out for us. I’m proud that Dylan has become quite resilient to the unpredictable changes when we are out. He can manage with support without his iPad. We come to the restaurant quite often and the staff are familiar with Dylan, a waitress that served us last time ruffles his hair to greet him on her way past. She makes him jump, he glances up ‘yah bee’(yes please) is his go-to response when startled.

Glancing around the room and its starting to get busy and there are a couple of women sitting at a table 11 o’clock to where we are sitting. I glance over to see the lady facing me looking at us, she gives a big beaming smile as we make eye contact, I look away unable to fathom if I know her from somewhere. I couple of times I look up to see her watching us. This isn’t unusual, often people will watch Dylan, his tics and behaviours are quite noticeable, but especially at special times like us being out together I try and zone out everyone else and make Dylan the centre of my attention.

A few minutes later the friendly hair ruffling waitress is over at their table, she’s shaking her head whilst the lady facing us is talking to her, the lady appears to be gesturing towards us and it appears from her face that she is making further requests to the waitress who continues to lean forward into the table and apologetically shake her head. I look away, feeling painfully paranoid that they are talking about us.

Focus on Dylan, focus on Dylan.

I start to remind Dylan that it will be time for pudding soon and so let’s get your order ready. Out the corner of my eye I see the lady from the table opposite get up and follow the waitress to the pay station, I quickly look away, hopefully they are paying and leaving.

Right on cue our waiter appears and Dylan is ready with his penned ‘brownies and ice-cream’ request for pudding, the waiter is lovely, speaking directly to Dylan and full of smiles and encouragement for him, sadly my only pudding request is the bill.

Dylan and I get back to our plans for the week, talking about college and Josh and Grace going back to school when the waitress comes over. She looks embarrassed and tells me that a man has offered to pay for Dylan’s dinner. I disagree, I mean, that’s kind and all but wholly unnecessary. She tells me it’s too late; the man has paid £10 for Dylan’s food and left, she says that the message was he thought Dylan was so sweet and just wanted to pay towards his food. My bill will now be £10 lighter.

My eyes prick with embarrassment.

‘Oh that’s so nice’ I say not wanting to appear ungrateful. I am ungrateful. I’m livid. The waitress puts her arm around me, uncomfortable with my teary response and I think uncomfortable with the position she has been put in. She leaves us to carry on serving her tables and I can barely look up. I cover my face with my serviette desperate not to look up at see the lady looking over. Trying to contain myself I refocus on Dylan and get back to our conversation.

Pudding arrives and it’s something else to focus on. Dylan digs in, he loves his pudding. I compose myself and get my payment ready for the bill. Our waiter comes over and appears embarrassed as he keys in £10 less into the payment machine than there is on the printed bill. I appreciate his enquiry into if I’m okay and his comforting smile as I pay the remainder of the bill.

Dylan’s nearly finished as the waiter leaves us. He is inhaling his food, clearly enjoying every mouthful as I start to pack away his pens and paper. I see a figure out of the corner of my eye approaching our table, it’s the friend of smiling lady, as far as I’m aware she’s had her back to us throughout the meal. She places a hand on my shoulder and leans in to say to me

‘From one carer to another, I know what it’s like.’

She slips a piece of paper on the table in front of me, it’s a flyer for the local carers support group. ‘Get in touch with them if you’re not already, they’re really good’.

I glance at the flyer

‘Yes I know them’ is my only response, ’thanks’.

‘No problem’ she says looking smug with her gesture of support and goes to sit back at her table.

‘For fucks sake’ I whisper under my breath. I turn back to Dylan who has finished his pudding and has taken the pen and paper out of my bag, he’s feverishly writing ‘car’.

We left, Dylan didn’t finish his coke (which is unheard of) and we walked in silence to the car.

Now, I have a number of issues having been on the receiving end of this interaction.

Firstly, I don’t believe a man paid for Dylan’s food. I think it was smiling lady and her friend. The request was to pay for Dylan’s food. Now Dylan’s 15. Who else would pay for a 15 year olds meal?

If it was a random man then who’s watching us? I am out for a meal with my son, what sort of person is motivated enough to pay part for a young boys meal, that’s just weird. It makes me feel paranoid that I am being watched, not a pleasant feeling.

Then there’s the offer of the support group; listen sweetheart, if I needed a support group I wouldn’t be out at the Beefeater sitting quietly enjoying a night out with my son. I would be at home, too scared to go out in case of others reactions, too worried about Dylan’s behaviour and not being able to cope.

I am out as a parent with my son, not as a carer. Out trying to be a good parent by having a positive interaction with my child. He is happy, I was happy. I am offended at her speculation that I may need some sort of support with this.

Thirdly and the most gutting thing of the whole event is that I fear Dylan was painfully aware of the whole thing.

He heard the conversation with the waitress, he saw I was upset, he knows the logo for the carers support group. Your interaction for support ruined my night out. I am incredibly uncomfortable that you contributed to his meal. It was a tip, a donation, to the disabled kid. This is not inclusive, hell if you wanted to do something nice pay for the whole frigging thing not just a random figure for the disabled kid. Paying it forward is an opportunity to celebrate the fact that you’ve noticed how nicely we’ve interacted, how well behaved he is, how nice it is to see a teenager out with his parent enjoying a meal. Not that he is ‘sweet’. What does that even mean?

Finally, pay when you leave, don’t sit and watch the situation pan out. It made me feel sick you waiting hungrily for the self-gratifying glory of paying for part of a kid’s meal.

What did you want, thanks? Me to be grateful? Dylan to perform a trick?

Controversial maybe, but I think that Dylan had part of his meal paid for because he is autistic.

I think that it was some kind of warped pity gesture under the cloak of paying it forward, doing something nice. Well it wasn’t nice, it was embarrassing, and hurtful.

It made me feel like I was being judged as not coping, of Dylan as being difficult when the reality is he did so, so well with coping with the difficulties that the visit presented. Your judgement dashed that effort and work away in an instant and made the situation about your judgement, your actions, your expectations.

Paying it forward is lovely if done right.

Maybe make contact with people, introduce yourself, get to know their story before you judge that they require your kindness? Otherwise it appears as charity.

If you are going to pay then pay, don’t pay part, don’t make it about a specific person; it’s a goodwill gesture, its not going dutch.

And don’t stick around to watch – that’s just gross.

I’m going back to the restaurant today to split a £10 tip between the ruffling hair waitress and the kind waiter from last night. I want to let them know that I understand the position they were put in and I also am not comfortable with what happened last night. Then I’m going to speak to management and suggest maybe they need some company policy or guidance for situations like this.

If you are going to pay it forward, pay it right.



The dentist has always been a great source of terror for many and this includes Dylan. We are so lucky to have a lovely dentist, she is kind and patient but the whole process terrifies Dylan, giving him an angry looking anxiety rash that creeps up from his chest, up his collar and around his neck.

He hates having his mouth invaded, he is so hypersensitive that teeth brushing has always been a very active and heavily involved area of care to ensure Dylan keeps well and cavity free.

We attend the dentist every 6 months and despite Dylan being compliant and coming in the room he will not sit in the dentist chair. He will watch Josh and Grace have their teeth checked and concentrates so hard on keeping his anxiety in check until his turn with the dentist is over and we can leave to the safety of the car home.

Dylan’s teeth are always checked with him sitting on a small fold up stool in the corner of the room. The dentist examines his teeth briefly as he will only half open his mouth for a few seconds at a time. She would kneel in front of him, with no seat herself and no light to see in his mouth. For years she could never see his back molars and relied on us to assure her that we persevered with his brushing and there have been no problems that we have noticed.

Over time with her patience and encouragement finally this month Dylan had his teeth check sitting in the dentist chair.

We offer him the oppotunity to sit in the dentist chair every appointment but Dylan usually point blank declines and grabs harder onto the seat of his trusty stool. This time he got up and sat with the dentist. I wouldn’t say he did it happily but he did it and he let her have a good look around. Good news is that everything looks fine; no cavities and no more baby teeth to come out.

Well done Dylan!


College Days

Since April Dylan started his once a week placement at a supported group within the local college and to say he enjoys it is an understatement.

The day he attends he starts with breakfast club and then will go for a swim. He stays for lunch and finishes up with some choosing time and math practice in the afternoon. He gets the bus to the swimming centre and buys himself lunch or a treat if he’s taking a packed lunch. He is in a class with 5 other young people with varying needs. Thankfully he no longer seems afraid of his peers like he was at school, he seems relaxed and appears to be enjoying himself.

He seems to be managing the transition really well.