The Sort of Family You Notice…and Not in a Good Way

New Year’s Eve 2015 and we’re at the Harry Potter Studios. 

It’s pouring with rain outside. And I mean, really sheeting it down. Nature’s own precipitation is putting the studio’s special effects snow to shame. The porch of 4 Privet Drive has turned into a waterfall.

Instead crowds of families huddle over the shared realisation that they’ve just spent five quid on a butterbeer …and it tastes disgusting! But towards the back of the café comes a raised voice. 

“Look at the state of you! You’re SOAKED.”

People look without looking as though they’re looking. A boy of 9 or 10 is being stripped of a dripping sweatshirt, his hair plastered to his head, his face ashen.

The raised voice – the boy’s dad – starts swearing. “I f*cking TOLD you NOT TO GO IN THE F*CKING RAIN. WHY DO YOU HAVE TO TAKE THE F*CKING P*SS?!!!”

The collective psyche of the crowd shifts uncomfortably in its plastic seat.

If there’s anything the English don’t like it’s swearing in front of children, never mind at children. But we don’t want to get involved. We just want to the voice to stop. And we hope to do that by looking whilst pretending we’re not looking.

“I don’t think he appreciates just how hard  it’s actually raining,” my sister whispers. “That poor boy.”

The trip had been a present for my sister – 39, but a Potterphile since the first book – and for SP’s 8-year-old sister, Amy, who was just getting into the books. I’d debated long and hard about taking SP too, but at 4 he qualified for a free ticket, so we played it by his mood on the day. 

It’s a lose-lose situation though when it comes to days out with a combination of neurotypical and ASD kids. You don’t want other children to miss out, but feel guilty if you leave the autistic child at home (even if that’s where they’re happiest). But take them too and you’re on tenterhooks all day, constantly a hair’s breath from a public meltdown.

  
Last year’s Fairy Fair was a case in point. Yep, that was fun!

And so it had almost been at Harry Potter. During the film clips at the start of the tour SP clamped his hands to his ears. As we left the Great Hall he wanted to go home…until he discovered the green screen flying motorbike. 

  
We spent a long time watching that bike revolve. And then another long time watching kids cast spells. (Twice we queued up to cast spells too before deciding not to.) And then back to the motorbike and then he discovered touchscreen carrot-chopping in the Burrow.

  
The day was deemed a success.

After the backlot though, SP was done. “Go home now.” Not even the buttons to press in the special effects department could distract him. “Go home NOW!”

Amy and my sister were lagging behind, wanting to soak up everything. The animatronics failed to engage him. “GO HOME NOW! GO HOME NOW!”

We were getting looks. The same we’re-not-looking looks that the soaked boy’s family had got. A realisation: as far as other people were concerned, we were the same as them. We were the sort of family that you notice…and not in a good way.

I tried to keep moving, slowly enough for Amy and my sister to not feel cheated, quickly enough to keep SP convinced that we were indeed going home. A member of staff started talking to us about Neville Longbottom’s prosthetic teeth, because Matthew Harris had come out of puberty just that bit too good-looking for the role of geeky pupil. I held my breath throughout the conversation, as though my lung function would stop SP from going into a meltdown.

At the model of the castle SP made a break for it as I tried to take a picture. More looks.

We gave the shop a miss, SP and I, and instead installed ourselves at the base of the foyer’s Christmas tree.

  
As we sat, SP fell asleep in my arms.

And there they were, out of all the thousands of people at the studios at the moment, the family from the café pulled up next to me. The older daughter was sullen, despite a huge carrier bag of goodies. The boy, now drier, straddled a Nimbus 2000 as his mum minutely directed a photo. The dad still moaned that the shot wasn’t right.

You can’t help but notice some families, and not in a good way. And I’m going to have to be aware that, thanks to SP, we are going to be one of them wherever we go.

This weekend we’re going to Disneyland Paris. For five days! Never mind Big Thunder Mountain – we’re going to experience far greater emotional roller coasters, I fear. Is it normal to feel anxious before a holiday? And if not normally normal, then normal within the realms of autism? 

I’m braced to do certain things time again, in the same order each day. I’m prepared for meltdowns and a pace set by SP. I’ve plans to overstock on familiar snacks, to have iPads and bubbles at hand and to be unable to capture those heartwarming shots that Pinterest do so well.

I suspect that with the best will in the world we’re going to be noticed at times. And not in a good way. 

I just hope that when I notice other families I can do it without looking as though I’m not looking. I’ll let you know how we get on.

 

A Light in the Darkness

A.k.a. The Message That Offered Hope

The past couple of days have been a low. SP is largely over his cold – he has a sparkle back to his eyes and is permanently glued to his iPad again – but he’s still not eating properly (or that should be ‘properly’ ie properly for him) and his behaviour’s regressed. He’s been more whingy and miserable than normal, more prone to meltdowns and wants nothing to do with his dad. He won’t venture beyond the front door and asks to be carried everywhere around the house.

Yesterday I lost my temper during a poo-related meltdown. I know I should remain calm, but it’s hard when there’s shit everywhere and I’m being hit in the face. And then I felt like the world’s worst mother for shouting at a child who couldn’t cope himself.

And then a reprieve – a night away and a spa day with my sister – was cancelled at the last minute. Whilst the rest of the family celebrated not having to cope with SP in my absence and SP reattached himself to my lap, I sat on the sofa and cried. 

And then I felt guilty, because at least I get the chance to escape every now and then. How will SP get to escape when he’s had his fill of autism for a bit?

In terms of lows I suspect it will be a minor one along our autism journey. Still, having day of crappy jobs at the hands of a sullen taskmaster and then not being able to go out was enough to have Cinderella weeping in despair. It might still be pathetic, but at least I’m not alone.

  
I might not have a fairy godmother to grant me a night out and a new pair of shoes, but when I felt at my very lowest, when autism was first being implied and I was beginning to realise the actual implications of that,  a friend – a mum of four sons with one diagnosed with autism (O) and a second (W) who has subsequently been diagnosed – sent me this message:

Hi sorry to hear you are having…problems with SP. O was diagnosed at age 3 and I found it very hard. I was devastated. Now if only I had known what I know now! He has surpassed his peers in all his GCSEs, he makes the most of every minute of every day. He is amazing at piano. He has more good friends than J who is fine. 

After his diagnosis the doctor told me she thought main stream education would only work for infant school. I was also told he would possibly never be fluent in speech.

O speaks far better than anyone I know. Like a very posh person, which of course coming from me is a wee bit unusual. If there is a bigger more important word he will use it, for example he told me the other day that he doesn’t find his father’s house aesthetically pleasing because of the level of accumulated dust. Well immediately J calls out ‘you mean his house is dirty you posh prick’ and a usual teenage argument begins. 

What I am trying to say is O is amazing and autism has not held him back at all but given him incredible determination and focus. He is setting up a computer club at school to help other children like W make friends as part of his 6th form community project. He thought of this himself after seeing W’s problems to try and help him. 

There have been some difficult times on the way, and I’m sure more difficult ahead with his moving on to uni and the worry that will bring, but if they had presented me with the amazing young man I have today instead of a diagnosis of a life long disability I would have gone out to celebrate. 

No two kids are alike, especially those on the spectrum, but I know many many kids who do very well in life with autism. My house is full of them most nights as O’s friends are all like it. Oh… And O is a ladies man. They are fighting over him. I think it’s the posh words!

I read it after dropping SP off at nursery, on my way to work. I crossed the park with tears streaming down my cheeks. It offered me hope when everything seemed bleak. I still didn’t know what autism fully meant, but in my heart I knew things weren’t right. I was grieving the loss of a life I’d anticipated for SP and was fearful for the life he’d be able to lead. She’s right – no two children on the spectrum are the same – but the message was exactly what I needed to hear. I will never not be grateful to her, my own fairy godmother.

On days filled with tempers, tears and fallout from a crappy nappy, the comfort from words of wisdom serve again. We’re allowed bad days – both SP and me and all of those around us – but that doesn’t mean that the long term picture needs to be bleak. 

Things have been better today. Despite a dearth of jacuzzi wallowing and spa treatments, things just feel brighter. SP is who he is both despite his autism and because of it and I love him just as he is.

  
I doubt it’ll be the last time I look to my friend’s words for the bigger picture on the bad days though.

Shutdown

I’ve learnt something this week: Man Flu is NOT the most melodramatic response to a common cold virus!!! Nope. Far worse is ASD Flu!!! 

Kids being ill is never fun. But an ASD kid with a cold? It takes it to another level!

1) Outgoing: Bodily Fluids

With luck with your normal child you get a bit of a heads up that they’re going to vomit. Not with SP! The first we knew was as the vomit flew from his mouth as he laid on my chest!!! I did well not to throw him across the room as a knee-jerk response. Husband meanwhile just stared. “HELP MEEEEE!” I cried. More vomit – I was covered. SP was covered in splashback as I tried to catch it in a tissue, whilst he tried to swallow it back. Grim doesn’t come close!

Oh, and on matters of all bodily fluids, normal kids won’t want to sit in whatever liquid they’ve expelled from their body. SP on the other hand, has howled every time I’ve removed him from a damp patch that’s leaked from his nappy and wiped bogies or bottoms. Seriously, little buddy, it’s better to have a house that smells of Dettol than one that smells of sewage!

2) Incoming: Food & Meds

Normal child poorly? Adjust their diet accordingly and administer meds as required. 

ASD child poorly? Calpol is squirted into mouths, but then dribbled out as swallowing is just not happening. Or sometimes the middle man is cut out and the Calpol doesn’t reach their mouth. Just squirt into clothes/furnishings instead. 

Meanwhile, no food passes their lips for days! The limited diet that SP normally demands (chocolate buttons, chip shop chips, cucumber and crisps) is rejected. And it’s replaced with…nothing. SP is already on the skinny side. He’s skin and bones by the end of this week and I’m at my wit’s end.

A Google search for help as to how to deal with this and…nothing!!! Realisation dawns: Google doesn’t know how to get food into an adamant ASD child! Since when does Google not know something?!!! I read various blogs and keep reassuring myself that he’s drunk enough red juice to sink a ship so we’re a little bit away from wasting away completely.

3) The Worry Factor

Looking at him though, you’d think he was at death’s door. All he’s wanted to do is lie down. He NEVER wants to lie down, even several hours after a reasonable bedtime. Normally the only place he’ll nap is in the car, but this week he’s dozed wherever he’s landed. 

Moreover, he’s not only rejected food, but all the things that he normally obessess over. I’ve had a week’s reprieve from the Tinkerbell/Curious George/Frozen trilogy that is required viewing every evening. Even his iPad has been on the same battery life since Thursday!!!

So laying down and staring into space it is. With a normal child, these dark times come at night (usually just after the GP surgery shuts, peaking around 3 a.m.). With an ASD child it’s all day – and all night – for days. Nothing adds to parental concern like total shutdown. Just two big, dark eyes wrenching your soul. 

This does at least mean there’s the opportunity to talk to the GP. But unless they can come up with a cure that doesn’t require doing anything to a resistant child then it’s not going to do any good. And chances are the advice is going to be ‘administer Calpol and keep up fluids.’ Back to no.2 then, with a hellish trip to the surgery thrown in for good measure. 

But at least all this languishing is non-demanding, right? Err, no. It’s been accompanied by constant requests for big cuddles. So I’ve been sofa/bed bound too. The washing pile has transformed into a moutain and SP is out of clean trousers to wear. Unsurprisingly, I seem to now be coming down with his virus too. That washing mountain is only going to get bigger, although the big eyes effect isn’t working for me in terms of sympathy.

4) The Sound of Silence

Thanks to the joy of sensory overload and lack of appreciation for general chit-chat, we’re used to a reduced level of talking in the house. But usually this is confined to anything directed at SP. What happens around him doesn’t bother him so much. But when he’s poorly it’s ramped up to the nth level. Whilst attached to the sofa, pinioned by SP’s little body, I’ve been able to make NO NOISE WHATSOEVER! Conversation with other family members is a no go. Even whispered instructions are out. Receiving a phone call – you’re kidding, right? 

Funnily enough though, the wailing at any spoken sound is far more of an assault to the ears, but doesn’t seem to bother him at all. Go figure!

5) Dragging it out

Normal child: maybe a couple of days feeling unwell, a night of a scary high temperature that’s gone by the time you can ring the GP and they’re back to normal, bouncing on the bed rather than resting in it. Or, sometimes, they wake up feeling wretched, you give them the day off school/nursery, dose them with Calpol and PRESTO! Half an hour later they’re fine and you wonder why you went to all the fuss of rearranging things at work.

ASD child: let’s eke this bad boy out. The period of feebleness is easily doubled, thus also doubling the level of concern and inability to achieve anything outside of patient care. It’s a good job he’s cute, because normally my patience would be wearing thin a week on.

Mercifully, we seem to be getting to the tail end of our traumas this time round. He’s back on his iPad and has a) eaten some crisps and b) smiled his first smile since last Sunday. Hopefully within a day or two he’ll be completely back to his usual self and I’ll wonder what all the fuss was about. All routines will be back in their place and I’ll have the Pirate Fairy song stuck in my head again. But, it turns out, SP isn’t the only one who likes predictability as at least I’ll know when I can crack on with that washing pile.

Everything Changes But You

Last week was SP’s assessment feedback meeting.

I’d been dreading it: sitting at a table of professionals, the only person with an emotional investment in the subject matter, as they deliver their verdict on my son’s failures. Even though I already knew what was going to be said, hearing things out loud wasn’t going to be an easy experience. 

As it turned out, it was nowhere as torturous as I expected. 

(Although that’s not to say I didn’t gulp back honking great sobs as I walked back across the park home. So many emotions rammed into one hour – relief, concern, guilt, gratitude – there was no way I wasn’t going to cry at some point!)

The outcome: SP definitely has Autistic Spectrum Disorder. He lacks the flexibility of thought that allows him to access the social world. He has sensory issues that make the physical world a challenge for him. And he will face the difficulties that these things bring throughout his life. He will never NOT be autistic.

And although there was laughter at some of his more random quirks, it felt like a stab in the heart to hear how he doesn’t fit in at nursery and how stressed he can get during transition periods.

But, at the same time, it was clear that the diagnosis didn’t actually change SP. He’s the same little boy he was before the diagnosis. He’s the same little boy he was at the start of the process and the same little boy he was before we were even really aware that anything was different to how it would normally be.

What the label does change, however, is that we will hopefully access help and support that will help us mould the world to fit SP better and to prepare SP for parts of the world that aren’t malleable.

(Although I do fear that accessing support and shaping the world – even just our immediate world – is easier said than done. There seems to be a defecit between supply and demand when it comes to services and the education system seems largely and increasingly intent on denying additional needs.)

Until now we’ve largely been winging it and yet for all of the difficulties he faces each day SP appears to be mostly happy. His world is all he knows and at the moment he’s not bothered that he doesn’t quite fit. And for the aspects that do upset him, now that we have the diagnosis we can work on strategies to help. His nursery have been referred for further support and given advice on how to manage the difficult transitions. The Earlybird course is helping at home and I got a pat on the back during our first home visit. And it’s visibly changed the attitude of those around us: he’s no longer a badly-behaved, poorly-parented child, a spoiled brat who needs more boundaries. To those that know (and over time, I’ll hopefully learn not to care so deeply about the reactions of those who don’t know) he’s a little boy who needs a bit of leeway to cope.

It felt odd to come out of a meeting with an irreversible diagnosis and to feel positive overall (despite the sobbing). It feels odd to feel relief that he has the label. But now at least we can put the question of diagnosis to bed and focus on how best to deal with it. After a year of questions that has to come as a relief!

The Beginning

Hindsight’s a great thing, isn’t it?

Looking back now I can see things in SP’s development that weren’t right…but at the time I thought everything was fine and the more challenging aspects were just part and parcel of raising a toddler boy. 

All small kids are prone to meltdowns, aren’t they? All small kids will pinch toys off another child or push them away, won’t they? Boys are slower to talk, aren’t they? And slower to potty train! And they all get obsessed with something, don’t they? It wasn’t so weird that SP would insist on visiting the railway station every day, was it? It was only over the road from our house after all and he liked waving to the train. All kids prefer certain foods, don’t they? And certain clothes. All kids protest about having their hair washed and teeth brushed, don’t they? I should be pleased that he could count and recognise letters, shouldn’t I? 

What I didn’t recognise was that although all these things were normal, the degree to which these things affected SP wasn’t.

It took him to go to nursery at 3 for his key worker to point out that all wasn’t well. After his first half term I got called in for a chat.

“He’s outstandingly bright – his numbers are phenomenal…But he plays in parallel to the other children and can’t cope when they get in his space. And there are times when he just connects from what’s going on as a way to cope. We don’t know how to reach him when he’s like that.”

I’d known his key worker for 20 years – there’s not one person who hasn’t met Mrs H who doesn’t think she’s a phenomenon – if she didn’t know how to deal with SP then something had to be wrong!

I wondered how I could have been so stupid not to see anything myself. And I cried the first of a lot of tears. How could I have failed my little boy so badly so soon?

This was followed by a disastrous health visitor visit last spring, my back put up from the second she crossed the threshold. By the time the extent of his developmental delay was laid out in tick boxes I was a bundle of emotion – part annoyed (I wasn’t so bothered that he wasn’t bothered whether he was a boy or a girl), part distraught (but I was bothered that he wasn’t bothered about having friends and had a complete lack of empathy for those around him).

Again I felt like a failure.

It took until Christmas for autism to be said aloud, however. It had been hinted at, implied, suggested…but no one had said it until we sat in the consultant paediatrician’s office, SP asleep on my lap from the overly-hot central heating, when we were talked through the ‘triad of impairments’ and how SP was ticking all of its boxes.

I cried again. This time not for failing – the assessment had given an explanation for everything he’d struggled with and as parents we’d failed to correct. But it also represented a lifetime of challenges, for SP, for Husband and I as his parents, for his sisters, especially Amy as she’s closer in age than his older twin sisters. It explained a lot, but it didn’t bring a solution.

But it also didn’t change SP. The autism is part and parcel of who he is – we are all shaped by how we perceive the world around us – but I love who he is whole-heartedly. Yes, I wish he’d use the toilet and not still be in nappies, life would be a lot easier if he wasn’t so rigid. I wish he had friends and I worry for his future. But I wouldn’t swap him for the world. 

And we’re still only at the beginning. We’ve got his formal assessment meeting on Tuesday – my money’s on me crying as I sit in front of a plethora of professionals, all with their perspective of the areas where SP is failing or is going to struggle. But this is the beginning – it gives us a lens to look at his behaviour through, a way to understand him better and shape things in a different way. We’ll formally have a label. A label that doesn’t change things, but one that brings support and advice and points us down a different path.

And my tour hide is pretty awesome. I just hope I prove to be a worthy navigator.