My Sunday Photo 17.6.18

Why Theme Park Accessibility Passes really do matter

Since DS1 was diagnosed with Aspergers in January there haven’t been many up sides to report.

Whilst it is expected that you will experience some comfort or relief from obtaining a label, in truth, that’s pretty much all you get. Because aside from that, the support is pretty non existant. Indeed, in the 7 months since his diagnosis, I have still not yet received even a referral to an NHS paediatrician for basic monitoring, yet alone the Occupational Therapy assessment recommended in his report.

So here we are, left to more or less bumble along, self educating as we go, and trying our very best to make family life work.

However, one small yet important up side has come in the most unexpected of places. Theme parks.

You see, since our diagnosis, I have been getting to grips with what the UK Theme Parks do to make their environments more autism friendly, and the vast majority of them offer various forms of accessibility passes (or queue jumping passes) to guests with social and communication related difficulties.

Each pass works slightly differently (usually offering a limited number of queue jumps per ride and per day), and obtaining one on your day of arrival takes a little preparation and patience – visits to an often busy ‘Guest Information” hut, standing in queues with the little man (kind of ironic making them queue to get a fast pass because they can’t tolerate queueing!), producing official paperwork to prove your child does really have difficulty, completing registration forms etc. It’s not a walk in the park. And I have to admit, I was pretty uncomfortable with applying for them at first. I felt cheeky, unworthy, somehow like I was doing something I shouldn’t.

I know many other guests at the parks silently hate us for it. I see the stares as we rock up at the separate disabled entrance and by pass the long queue they have diligently waited in for as much as 90 minutes. It’s ok, I get it. I understand your perspective: I was probably one of you years ago, and I know my son doesn’t look disabled to the untrained observer, so why is he standing at the disabled entrance?

But, the impact these fast passes have had on our days out is substantial. You see, they have given us just a little piece of freedom back.

Before DS1’s diagnosis, theme park visits were at best painful, and at worst, traumatic. I could never understand why, despite being insanely excited at the prospect of going, once there, he would appear to be the most obnoxious, ungrateful and darn right rude child imaginable. Sometimes he would even resort to aggression and violence, like the time he took one good friend to Legoland for his birthday and then bit her during an outburst. So I almost always left these places embarrassed, offended and resentful of his behaviour and vowing never to visit such a place again.

But now, with the benefit of hindsight and a whole heap more understanding about my boy’s challenges, I see why those exciting days out always ended up in disaster.

What I, and the other patient queuers couldn’t see was that my son finds the regular customs of a day at the theme park so difficult. As a sensory seeker, he loves the rush of a ride. Experiencing the exhilaration of a rollercoaster is a moment when he is at his most relaxed and free. But he finds queues simply intolerable. The requirement to stand still for long periods of time is impossible for him – his sensory difficulties cause him to fidget endlessly, to climb up and over railings. The crowds are overwhelming – the noise, the claustrophobia will cause him to stim. His poor spatial awareness means he will inevitably bump into everyone around him whilst he climbs and wanders. Add to this the fact that he struggles to understand the feelings of others or the reason he has to wait, and a meltdown is inevitable at practically every ride.

So what you may see (just like I used to) as a poorly behaved, hyperactive and rude little boy – is actually something quite different.

And those access passes (coupled with more understanding from me of how to prepare for the other likely meltdown triggers a day like this will present) have removed that silent struggle from my little man, and allowed us to enjoy, rather than endure these occasions. To be just that little bit less on edge.

We have visited 3 theme parks using the access passes since his diagnosis, and without doubt, every experience has been radically different to our earlier attempts. To see him excited, thriving and carefree, like any other child should be, is a joy.

We need those times. He needs those times.

And I appreciate this accommodation of his needs so much. So thank you to Paulton’s Park, Legoland, Chessington and all the others that have implemented such a system. However imperfect, those passes matter.

My Sunday Photo 3.4.16

School SEND Provision – Beginning the fight for my child

Today a report from the charity Austica revealed that premature deaths amongst autistic people are at disturbing levels, with certain groups with the condition dying a staggering 30 years younger than the general population.

Perhaps even more distressing are the high rates of suicide amongst autistic people, with those possessing no learning difficulties being nine times more likely to die from suicide when compared to the rest of the population.

As a mother of a recently diagnosed autistic child, this report makes frightening reading, and at this point I can’t help wondering how much stress and mental health issues might have contributed to these untimely deaths. The stress of being expected to act “normal” and conform in a neuro-typical world.

At age 6, my son has already suffered an unacceptable level of stress for my liking. Particularly in the school environment.

The stress of trying and failing to understand and fit in with his peers. The stress of the busy and noisy classroom, which does not sit well with his sensory processing disorder. The stress of sitting still for prolonged periods of time when his hyposensitive areas require constant movement to satisfy his sensory craving. The stress of the rapid fire pace at which he is required to learn, and the high volume of work he is required to complete on a daily basis – all the more challenging for a child with thought processing and short term memory issues. And yet despite his difficulties, he is currently expected to just “get on with it” and knuckle down like every other normal child. To learn in precisely the same way and to churn out the same outstanding results.

The stress he, as a young boy, is under feels a catastrophic failure.

I know he is a bright boy. I have his autism assessment report to prove it:

• 97th percentile in the maths assessment – age equivalent of an 8 year old
• 89th percentile in his spelling assessment – age equivalent of a 7.7 year old
• 79th percentile in his reading assessment – age equivalent of a 7.3 year old

… to name but a few areas.

And yet, just a few days after receiving this report, I was sat in his teacher’s classroom being told that if he didn’t “buck up” in his Maths and English (handwriting) he would not meet the national standards required at the end of the year.

I listened to them tell me that despite my son obviously knowing the answers to almost every maths question, they are not impressed by his inability to write down his calculations in his workbook. The fact he uses dots to show his addition, when they only permit it for multiplication or division. The fact that when he has to sit a timed test he will not have time to draw dots.

I listened to them tell me that his handwriting is sloppy, that he rushes and unless he has a teaching assistant sat next to him, they are wasting their time. That he needs to start consistently using capital letters, finger spaces, commas, full stops and the correct flicks/leads to join all his letters. The insinuation was that he was slacking.

But in taking this simplistic and neuro-typical view, I fear they are missing the many subtle yet significant difficulties my son possesses and in doing so are placing even more stress on him and missing the opportunity to realise his true potential.

How would you deal with learning to write if you suffered from thought processing delay and short term memory problems? How would you deal with remembering and processing multiple instructions to include capital letters, full stops, commas, flicks, leads, finger spaces (and next week exclamation marks!) if you found it difficult to remember single instructions? And how easy would you find this requirement if your need for constant sensory input meant you struggled to sit still for more than a few seconds at a time and you found the noise of your peers, the lights and sounds of the classroom distracting and even painful? Wouldn’t you rush? Would you find it easy?

They wanted to send him home with more homework until he improves. They want to keep him in at playtimes to practice until he meets the required standards.

I said “no”.

My 6 year old boy doesn’t need MORE homework. He needs more space and time to be a child. More space to unwind from the stress and pressure of a school environment that pushes him to achieve so much so fast . And more support at school from people who understand his differences and needs.

So having won the battle to have him diagnosed, here is where my next fight begins. The fight for a suitable education, for his right to reach his potential, for his right to be understood, supported and accepted for who he is, not for who they want him to be.

I understand that his diagnosis is just a few months old, and that his school and everyone who know him need time and help to adjust. But I’m impatient for change. I’m impatient to provide my son the happiest and healthiest future possible. One where he never ever becomes part of a terrifying statistic.

It’s D-Day: The diagnosis

So today is the day. Here we are.

The assessment we waited so long for, is finally over and we have a diagnosis.

My son has autism.

More specifically, the clinicians believe he has Aspergers.

Despite my fears that DS1 would mask his issues and that once again I would be accused of poor parenting, for once, these people could see through his superficial capabilities to his underlying difficulties, and for once they agreed that I was right to have concerns.

So how do I feel?

If I’m honest, I don’t know.

I do know I feel vindicated. For 6 years I have believed that there was something wrong. For 6 years I have been asking for help. But for 6 years I have been rejected, dismissed and accused of being the cause of my son’s problems. For so long I have heard excuses and been made to feel insane. There are times I have doubted myself and questioned my ability as a parent. But it is this very ability that gave me the instinct to fight to be heard. Like any parent, I know my child better than anyone else, and today the professionals finally confirmed that.

I expected to feel angry. Furious at those people who have failed me and my son. The NHS professionals who refused to refer him for assessment, the education professionals who refused to acknowledge my concerns and instead suspected me of child abuse. The numerous people who blamed all his difficulties on my decision to go to back to work and the ignorant people who insisted he couldn’t be autistic because “he was too smart”.

But in truth I don’t. I don’t have the energy for anger. It’s a wasted emotion right now.

I’m exhausted and numb.

I’m also confused. Because the diagnosis of Aspergers isn’t quite what I had expected. And right now, I don’t know what that means. I need time. Time to process.

Since finding PDA, I felt I had found my son. It was my lightbulb moment. The PDA behaviours fitted my son, and the PDA strategies worked in managing his issues. So I’m nervous that in classifying him Aspergers, the professionals will request support and strategies that won’t really hit the spot.

But right now, I see this initial diagnosis as a key step forward. There is no doubt, my son has an autism spectrum disorder. There is recognition that he suffers from sensory processing disorder and struggles with many social and communication skills that we take for granted. There is agreement that his difficulties cause him intense stress and anxiety and that his meltdowns at home are the result of him holding himself together at school. So this is a foundation upon which to build.

And when I get the full report and have had time to digest it, the fight will begin again.

In the meantime, thanks to those who have listened and supported this far. It has meant the world.

When Christmas isn’t all comfort and joy

Christmas is almost over, and New Year is so close you can smell it. And I for one will be a little pleased to see the back of it.

It pains me to say that. Genuinely, I love Christmas. I love everything about it: the hype, the decorations, Santa, spending time with my family, giving presents and the annual mammoth roast that tastes so good I just have to eat it until I am sick.

But it is those very things, all those exciting, special things, that seem to trigger DS1’s most difficult moments.
For several years I have found my oldest son’s behaviour extremely challenging at Christmas.

Christmas Eve, the build up to Santa’s arrival has repeatedly led to explosive meltdowns. In fact, the more I would remind him to behave himself if he wanted Santa to visit, the worse his behaviour would become. Inevitably, every letter to Santa before bedtime would consist of an apology for his poor behaviour that day and a promise that he would behave better tomorrow.

Christmas Day would be manic. He would dominate the present opening. Tearing the wrapping paper from his presents at alarming speed and then attempting to open other people’s presents before they could. He would often appear ungrateful for the wealth of toys he had received and be totally unsure what to do next.

He would frequently appear to attention seek and cooking Christmas dinner was interrupted repeatedly by his attempts to sabotage.

In general, his behaviour appeared hyperactive, obnoxious and incredibly irritating and I would feel frustrated, embarrassed and somewhat upset that my high hopes for a happy, fun, and dare I say – relaxing day, were ruined.

But I never understood why. Until I became aware of ASD and PDA.

It was only then that I could understand that perhaps, just perhaps, that hype, those expectations, the extra people, the loss of routine, might be incredibly stressful for him and that perhaps his manic and challenging behaviour was actually a result of high anxiety.

So this year I tried to make things a little easier for him. To lower demands, give him greater control and help him manage his expectations.

On 1st December, I assembled the tree while he was at school and let him decorate it exactly as he wished.

That night we also started to read a bedtime story called “How Many Sleeps Until Christmas?” to manage the countdown.

5 days before Christmas I put up a countdown board and each morning he would write up how many sleeps were remaining until Christmas.

I also began to play a personalised Christmas story telling CD in the car which he seemed to really enjoy.

On Christmas Eve, I anticipated that the expectation for him to “behave” was just too great a demand and made meltdowns more likely, so I changed tack. I kept demands on the day low. He was left to do as he pleased in the morning. No requirement to get dressed, no chores, just playing what he wanted, when he wanted. While his baby brother took a nap, I played with him and we drew Christmas pictures together. At that point, he volunteered to write his letter to Santa.

When he asked what to write, I suggested that what Santa would most appreciate is that he tried his best this year and not that he always behaved. This seemed to calm him, and the result was beautiful.

 

In the afternoon his tension rose and the odd outburst occurred, but we managed to prevent any extreme meltdowns. By late afternoon we were using the NORAD Santa Tracker to trace Santa’s movements and by bedtime, he was not far from the UK, so this was the perfect persuasion to get him into bed and asleep pronto!

On Christmas morning, DS1 was inevitably up ridiculously early. From 4.30am he was in and out of his room like a yo-yo unable to sleep.

By 7am, he was downstairs examining his haul.

To keep his anxiety low, we explained how the day would unfold, giving him control where possible to decide what would happen and when. We agreed specific play times with daddy while his baby brother was napping, and again while Grandad and I were cooking the Christmas dinner to manage his expectations and try to minimise his attention seeking. Finally, I told him it was ok to take regular visits to his room to chill alone if things got too much.

When the Grandparents arrived for another round of present opening, we put DS1 in control. He was the director of the show, the conductor of his orchestra, dictating who could open their present next.

The day went largely well, with only the odd hiccup. The little man held it together well, taking himself to his room occasionally to play in peace and even agreeing to eat the turkey roast without chips on the side.

All things considered, it was a huge improvement on previous years, but my god, we have paid for it since.

By Boxing day, his behaviour was becoming difficult. He was dominating play with his baby brother, frequently snatching toys from his grasp, shouting at him and interrupting his attempts to play with his own toys alone. His general behaviour was becoming more manic and defiant, and he was taking far more distracting to keep him from melting down. Bedtime could not come soon enough and my nerves were beginning to fray.

The following day, we separated the boys as the play was becoming stressful, so hubby took our youngest out while I took DS1 to lunch and then the cinema. He was fidgety and manic, but manageable, and we had a good time.

On 28th December, I agreed to another outing of his choice to keep him away from his little brother for a few hours. This time a pantomime visit. He fidgeted, picked his fingers, and repeatedly asked if it had finished, before declaring it awesome. We had a good experience and he seemed to be happy and coping well. But once home, his behaviour again became extreme.

Since that time we have bounced from one exhausting meltdown to another every single day.

We have set up a sensory light tube in his bedroom to create a calming space for him to escape to, we have used every strategy possible to reduce his meltdowns, but ultimately, this time of year has taken it’s toll on him, and us, and I am hoping that a return to the school routine will help stabilise his mood.
So goodbye Christmas 2015, I think we enjoyed you for a while, but New Year and normality – whatever that is – awaits.

Our PDA Story – A Small Step in the Right Direction

Today I am filled with emotions. A whole smorgasbord of emotions.

But I guess if I had to pick two – I’d choose excitement and NERVES. Lots of NERVES.

For today I received some news.

Today I received confirmation from an Autism Centre that my eldest boy has been ACCEPTED for assessment.

How the hell did this come about?

Let’s rewind.

Since I first had my lightbulb moment many months ago, I have been silently but steadfastly working towards a diagnosis for my son.

It started with a visit to the GP, who sent me to the Health Visitor, who sent me to the school nurse, who tried to send me on parenting classes. I spoke to the SENCO at school, who wouldn’t support a referral because my son is apparently totally fine at school (I want to swear here but am refraining), I spoke to a local council helpline, I spoke to a local Autism charity, who sent me back to the school, who sent me back to the GP.

Are you following?

Feeling abandoned by the authorities, I joined an online PDA Support Group and ordered several recommended books.

Then I read a fantastic post by a wonderful blogger whose daughter had been diagnosed with PDA. I contacted him via Twitter and asked for his tips on achieving a diagnosis. He not only provided me with a recommendation of a specialist centre, he also listened to my story, and told me about his own long journey.

Armed with new information and the unfaltering support of my family, I contacted the centre and began a process of private self referral.

But a privately funded referral did not guarantee my son would be accepted. I had to provide sufficient evidence to satisfy their clinical team that he was appropriate for assessment.

Since I have been wholly dismissed by the NHS since my son was 2, I had no previous clinical opinions or notes to support my case, so it was just little old me, articulating in a detailed and evidenced manner, why I believed he was suitable.

And after 4 weeks of waiting, the clinicians agree, and very soon I will receive an actual date for a full diagnostic assessment of my boy.

Armed with this information, I approached the school, who have finally agreed to meet me and have perhaps, just perhaps accepted that I might be onto something and I certainly am not going to go away.

After 6 years of feeling incompetent, crazy, alone and despairing, I now feel tantalisingly close to an answer.

And in the meantime, I have found some new wonderful allies. Fellow PDA parents who just “get me” and my boy. Having suffered the same frustration for so long, they are masters of this condition, experts on their children, fountains of knowledge.

So today, for the first time, we take a step. A small step in the right direction.