​My Love / Hate relationship with our NHS

A couple of things have happened this week which has made me reflect on my experience with our NHS. It’s left me thinking, love it or loathe it? 
As some of you know, it took around two years to get The Monster’s autism diagnosis – that’s pretty good, and we are considered lucky to get a diagnosis at such an early age. He hasn’t been seen by his paediatrician for 6 months and is now due a follow-up.  I am desperate to get the ball rolling on getting  Occupational Therapy and a formal sensory processing diagnosis. This will not only massively benefit him (and us) but will also add some weight for his educational needs and support, which is now urgent given we have some big decisions to make before he is due to start school in September. I have made no secret about this and have spoken to health visitors, his GP and finally on advice that it would be the quickest route, I spoke to his paediatricians secretary. She advises me to call the booking team as nothing was in the diary. This is why I started to reflect, bare with me and I will put some more meat on the bones. 

I am super greatful for our NHS most of the time. Let me pinpoint just some of the reasons why I LOVE it:

  • I have gone under the knife four times, each time losing a body part and have received good care on (almost) all occasions.
  • We have leaned heavily on it for The Monster and will continue to, likely for the rest of his life. He has had hours of observations, consultations and tests prior to diagnosis alone
  • His 3 month old baby brother (AKA The Small One) is also reliant on it after being born with only one kidney, a poorly one at that. He will be having his first operation later this month. I will be eternally greatful to the nurses that looked after my precious baby around the clock when he was born and in neo-natal away from his mummy. The unsung heroes of the NHS.
  • We are (almost) guaranteed to get a DR’s appointment on the same day we ring. 

BUT

Here’s the flip side:

  • Today I made a call to chase up The Monster’s follow-up appointment which is due this month (May). I get told that he can’t get seen until SEPTEMBER as the diary is full until then. I respond that this is totally unacceptable as it should’ve already been booked and manage to get one on 31st July. The booking system is so inadequate and the DR’s are so busy that they simply do not have the time or resources to offer more slots.
  • The Monster only received his diagnosis after me chasing the hell out of most appointments. In fact, right at the beginning of the process when he needed his first speech and language appointment, hearing and epilepsy tests they archived his files rather than sending to the relevant departments. If I didn’t chase, he may have been lost in the system forever. It is worth pointing out that the Dr was mortified that this happened, they only realised when I chased and pointed out it was due to a new system they were using. They advised me to complain. I didn’t. 
  • The Small One had his second lot of immunisations this week. After the nurse injected him, she slipped with the needle and stabbed my leg leaving me bleeding. She apologied, shocked and visibly a bit shaken. I said it was OK, and genuinely was OK with it as it had only been in my healthy boys leg. It could’ve been a different story though.
  •  I had several antenatal scans with The Small One where they identified he had Renal Dilated Pelvis (a poorly kidney), fairly common and should clear up after birth. They stated on the reports they had seen both kidneys (several times). He was born with ONE kidney. Now, I’m no doctor but surely they should’ve looked for the other given that they had identified one was poorly? When I have the time and headspace to fight this, I will campaign to get their scanning paperwork changed. Hearing the words “not compatible with life” when he was only 2 days old will stay with me for the rest of my life.

I have met some of the most amazing, selfless people working in our healthcare system and for the most part the downfalls have been to systems and procedure. But it’s also evident that these guys are busy. SO busy. I’m not going to get all political. I just wanted a bit of a vent. How about you, do you love or loathe it? 

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Christmas 2016; A sensory delight.

Preparation is the key, right? For most what does this mean? Buying presents early, getting the food shop done before the 24th and making sure you have enough wrapping paper so there are no last ditch attempts at midnight Christmas eve? Preparations in our house were a bit different. They involved priming The Monster about Santa, talking about the big fella for weeks in advance. Putting up the decs late for damage limitation and keeping things really simple. This year I wanted him to “get it” a bit more. It was his fourth Christmas and other children his age were so excited. I Learnt a lot, thankfully, just before the festive period about how this time of year could be terrifying for people with autism and sensory processing disorder and reeled in my perhaps selfish desire to want to go all guns blazing before it was too late. Let’s look at some of the features that make a Christmas and un-pick them from an autistic, or our monster’s point of view:

Santa: a larger than life guy who dresses in bright red, breaks into your house and delivers presents to children who are on the good / nice list. 

He’s sounding pretty terrifying already and I don’t need to see facial features to help determine someone’s emotions. I can hear in his voice that he is jolly. I can’t see his mouth nor his eyes and most of his cheeks are covered by a huge thick beard. I’m not deterred because aside from his face which I mostly rely upon to read emotions, his other body language tells me this man is safe. For any child, autistic or not Santa can be pretty terrifying! I suddenly thought that being autistic must be like walking around in a world full of Santa’s, people unable to read emotions using the facial features that we rely upon daily to know if someone is happy / sad etc. 

We take The Monster to the same department store each year to visit Santa and this year was the best yet. He walked in, looked stunned that the guy out of his books and on the TV was sat there, snatched his present off him, played with the camera and equipment and then tried to gatecrash other kids visit. No tears but will need to work on better manners for next year!

Christmas tree: A huge (normally) green spiky tree that goes in the house, often in a space where something else normally goes. Covered in an array of coloured baubles, tinsel and lights.

Pretty huh!? How about completely overwhelming for folk that have sensory processing issues. I don’t think The Monster was upset by the tree but rather intrigued. He wanted to touch it and pull at it, making a beeline for particular decorations and lights. I’d been forwarned by nursery about how he “helped” put the tree up and I had been witness to him “helping” when collecting him. Hence our tree going up late. Ours survived but Nanny’s tree was victim to a fall at the hands of The Monster. Order and routine is a large part of many autistic peoples lives and having a tree pop up for a couple of weeks can be super disruptive. 

Presents: products of all shapes and sizes, disguised by being wrapped in brightly covered crinkly paper. Mostly full of welcome surprises – but not always.

The Monster has never been one to rip into presents. In fact this year is the first time he has ever opened presents by himself (with a bit of encouragement). In The Monster’s case the act of opening a present isn’t to be rushed. In previous years he has had unopened presents as late as June (before you assume, he is not a spoilt child with loads of presents!). I was keen that any presents he had this year were opened on his terms, when he was ready to. It took about a week, opening a couple a day but they are all done! 

I’ve heard about people buying the most inappropriate gifts for autistic children and fortunately we struck gold this year. The most thoughtful gift winner goes to my parents who got him a box of sensory based toys and included things like a harmonica, chatter teeth, oil filled egg timers, a sensory light that flashes all different colours, a maracca amongst other goodies. All relatively cheap but involved a lot of thought. You have to pick your moment to get the best out of him with it all but it provides a lot of sensory stimulation and learning and will work wonders for our 1:1 time. I would urge anyone that is buying for an autistic child to find out what their interests are etc, the monster has been given many gifts in the past that he simply won’t benefit from as he is either not there developmentally or he doesn’t have concentration for. Some old presents also haven’t stood the test of time because The Monster is so heavy handed. Because of his SPD he doesn’t always understand the art of being gentle etc and having to throw away a favourite car because it’s wheels have fallen off isn’t cool. I imagine this will get harder as he gets older and more attachments are formed.

People: crowded spaces, family, friends and more visits to people than  would ordinarily be achieved in 6 months crammed into a 6 day period.

It’s Christmas and everyone wants a slice of the action with The Monster (totally understandable, he is awesome after all). I was super proud of how well he adjusted to being in up to four different peoples home in a day. Different trees, lights and presents in all places and a different set of rules in each house! It’s OK to play pretend phones in one house but this can’t be replicated in everyone’s – taking off with the cordless phone of an 83 year old is not the done thing! It’s OK to change the channel of the TV at one house but don’t expect the same appreciation if you try turning over at someone else’s whilst mid-programe. It’s quite a mixed set of instructions that if you think about could be confusing. 

I find it stressful taking The Monster around visiting people. He is difficult to manage and not everybody “gets” him. He is a live wire and if you expect a relaxed visit where he will sit down for even 30 seconds you are mistaken. Instead he will rip through your house like a whirlwind, eat all your chocolates (and anything else he can get his hands on), pull your beloved cats tails, put finger marks over your TV and windows, post anything that will fit through the letterbox, and he will even pull the blinds out of the window if you get him excited enough! I leave visits feeling drained and stressed 99% of the time. The Monster generally leaves feeling wired. Something we have to deal with in the days and weeks that unfold as he processes everything, generally in the middle of the night. 

Sleep: A period of rest and a time to recover from the day.

I know, I know. I always bang on about sleep! Maybe if I was getting some I wouldn’t need to! I fully expected The Monster to regress over the festive period. Taking into account all of the above then it is understandable and true to form he didn’t disappoint. In hindsight we should’ve contacted his paediatrician prior to the holidays to get some melatonin but stupidly we didn’t. As a consequence he would wake for hours at a time during the night. One night he got up for the day at 2am…..2am!! no further sleep required! There was a time not all that long ago that I would be going to bed at that time! At 34 weeks pregnant talk about less than ideal and there was no escaping it since he was in the same room as us. The one and only benefit of 5 nights with hours upon hours of broken sleep was that one day he had exhausted himself so much that he slept for 14 hours, that is an insane amount of sleep for him and rather gutting for me, my unborn child had other ideas about me following suit! Now, 4 days into the New Year, we are slowly getting back on track. Still the wake ups but less frequent and for less time. 

So, how was our Christmas taking all of the above into account, plus the extra calories, extra travel, extra daddy time (he wangled 17 days off!) and extra Monster time (no nursery)? Well, I couldn’t be prouder of my boy who on the surface of everything appeared to take everything in his stride. He conformed to everything thrown at him and could almost be mistaken for a neurotypical child…in a hyperactive, non-verbal, crazy kind of way! 

Things did take it’s toll though through ways he can’t control and by means which I am still learning about. Part of his persona is his need for sensory feedback, he seeks this from a lot of things, for example he craves rough play because he likes the feeling from it, he shouts in an environment that echoes because of the noise he hears back and to put it bluntly is heavy handed because he doesn’t know what pressure to use on things. He flaps his arms, spins and scrunches his eyes closed whilst shaking his head or walking because he enjoys the feeling known as feedback that it gives him. 

Over Christmas his arm flapping became excessive, when excited he flapped his arm like a chicken flapping it’s wing, he walked on his tiptoes enough others to notice (one of the classic signs of autism) and the thing that I found most distressing was his middle of the night routine of pulling his duvet over his head and entire body, not leaving so much as a toe uncovered. He would wriggle and writhe under the covers desperate for some relief or release of something, I don’t know what but whatever it was it wasn’t working. He did this for hours at a time and nothing we did could comfort him. We tried deep pressure, huge hugs and wrapping ourselves around him to give him the feedback he needed but it didn’t work. We were helpless, the duvet was helpless, everything was helpless and it made me sad. Moving into this year, I am going to do all I can to understand him more, to understand others more and to understand the fascination that is autism and sensory processing disorder. The more I Learn the more intrigued I am, I hope through our journey you learn something too, or perhaps you can share your experiences.  Buckle up, come along and enjoy the ride! 

Reception class applications, EHCP’s and rocking horse shit! 

We’re currently stuck between a rock and a hard place. The Monsters ASD diagnosis happened in November. We are led to believe he will be granted an EHCP for school. For anyone that has been through this process or is about to embark upon, this takes 20 weeks from the date the initial paperwork lands on the relevant desk with the council – wowsers, that’s over a third of a year to get some paperwork in place!! By my back of fag packet calculations, that will take us to April time (ish)….having spoken to the council last week they said they still haven’t even received his referal. Apparently a month, give or take isn’t actually allowing sufficient time from diagnosis to getting the ball rolling. If only the same manner applied in all work scenarios….but you only asked me to do it a month ago so no, your work hasn’t been actioned yet!  Can you actually imagine!? 

Right. So we’ve established that the EHCP should be in place by April(ish). That’s OK, because he isn’t due to start reception until September, perfect hey? WRONG! *said in tone of Judge Rinder*. You see, all school applications (in Birmingham at least) have to be done by January for a September Reception intake with places being offered in April. Having spoken to the council several times, I have to submit school choices for mainstream, eventhough it is highly likely The Monster will need to attend a specialist school. Just in case he doesn’t get an EHCP at all / in time etc. 
So just how easy is it to find a suitable mainstream school for a non-verbal child with autism and sensory processing issues? To put it bluntly it is like looking for rocking horse shit. 

I’ve now looked at 4 mainstream schools, all of which had lots of positives for a typical child but absolutely no provision for The Monster at all.I kid you not these are some of the statements I received when looking around the schools, bearing in mind that it was the SENCO that showed me around each:

“Do you think he will ever be able to talk?”

“We don’t have funding to offer additional support so it would be a case of him fitting in with the rest of the class”

“You might want to look at alternatives”

“Most children can say at least a few words by the time they leave our nursery”

“We have several autistic children in the school, I won’t tell you who they are but you will probably be able to spot them”

“You’ll have a tough fight on your hands to get any support, even with an EHCP”

These are just a few examples. Filled me with no end of confidence that The Monster would fit in and be able to manage…..NAAAT! I even said on one visit that I was getting the distinct impression that not one of the schools I have visited wanted him. Let’s just say I didn’t stand corrected! 

I have a few reliable sources that inform me that a typical teacher receives less that 2 hours training on autism. Hardly surprising given that it only affects 1% of the population. Totally get that and I am no way going to enter an argument that teachers should be able to adapt to manage all pupils in their class despite their differing needs. Geez, I have way too many teacher friends to even go there! What I am critical of is that I am being forced to apply to mainstream schools, even though they are the complete wrong environment for him to flourish in just because his diagnosis happened at the wrong time for applications.

Aside from the typical difficulties in communication that The Monster has, let’s look at the sensory side. Display boards so bright and shiny that they would brighten up even the dullest of days. Shiny mobile displays hanging from the ceilings. 30 children crammed into a tiny classroom where the ceilings are so high the noise is going to bounce around like a wrecking ball. Halls so vast that would make the perfect space for stamping around, shouting and seeking any feedback possible. Schools can be very scary places! 

I am petrified of The Monster being sat at the back of class (I’d be willing to bet he wouldn’t sit for longer than 5 minutes) not being able to communicate to anyone verbally. Teachers not being able to communicate to him any other way but verbally. Pupils left wondering what’s wrong with him. Him getting so far behind and not understanding anything. The frustration getting so unbearable that he pinches someone, anyone, so hard that it will leave even the hardest nut job in tears. 

It is keeping me awake at night. A lot. Geez, I never thought I signed up to this and he’s only three years old. I will be grey and wrinkly by the time I’m 40 at this rate. 

As part of my due diligence (check me out with the big words!) I have obviously looked at alternative options. Home schooling is a definite no go, for lots of reasons, although get why it might be perfect for some. Mainstream schools with a resource base (a unit with special needs attached to the school) is a possibility, I was supposed to look at one the other day but had to cancel so the verdict is still out on this option. That said there are only two relatively locally, one with a specific autism unit, the other which specialises in something else.   Or a special school. 

Only a few months ago the thought of sending The Monster to anything but a mainstream school hadn’t even entered my head. All parents assume they will go the “normal” route right? I’m now totally ashamed to admit that my vision and understanding of a “special school” was way off. In my minds eye, they are full of severely disabled people. People much different to The Monster. It wasn’t until I researched them that I realized that they aren’t all like this. That there are places catering for different needs. So obvious when you think about it. Sometimes I am dumbfounded by how narrow minded I have been! Anyway, after much desk research I found two schools, virtually on our doorstep which both specialize in autism and speech delay. Queue the lightbulb flicking on! I’ve since visited one of these schools and knew instantly that this is the right environment the monster needs to be in. Why? Here are just some of the benefits:

  • Class sizes of less than 15 pupils
  • Up to 4 teachers per class
  • Makaton (signing) part of their ordinary communication
  • Visual learning pivitol – PECS and picture based learning an essential part of teaching the curriculum
  • Teachers specialised in ASD and SPD

So what happens now?

We have to apply for mainstream schools so we will make a judgment on the four that I viewed. That said it is highly unlikely he will go any of them. Not without a fight from me first. Because of the silly application system I’ve been told that he may need to attend mainstream for a term or two until a place in a specialist school becomes available (assuming he is granted an EHCP- something else I will fight damn hard for if I need to). Over my dead body will he be settling in one place and then moved to another. Difficult enough for anybody never mind someone on the spectrum. Besides it will be me dealing with the sleepless nights because of disruptions to routines. Nada, not happening. 

We sit, wait and fight for his EHCP to be in place ASAP so we know EXACTLY what provisions he needs.

We battle it out for a place at a specialist school until we get one we are happy with. We won’t settle for anything. 

We hold the monster back a year and get everything in place for the following September. A fairly likely option as he already has the disadvantage of being a summer baby. 

Whatever option we are dealt, there’s one thing that is a cert. It looks like we have a battle on our hands. My sleeves are rolled up and ready to go, I will fight hard to get what my precious boy needs. Lets not also forget he is THREE YEARS OLD. THREE!!! a lot can happen in his short life between now and then. His needs could change….vastly. 

Are you in, or have you been in a similar situation? I’d love to hear about your experiences. Perhaps you’re a teacher and can offer some advice? 

Watch this space folks, watch this space! 

I wish I was a mind reader…

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Part of our daily ritual, an absolute must is that the monster has to go on the tablet the minute he gets downstairs in the morning. I allow this until breakfast is done. It allows me to do important things like catch up on emails, the news and of course check out what’s happened in social media land!

It’s a choice of BBC IPlayer for Kids or trusty old YouTube to come up with the goods and 9 times out of 10 they do (hooray!). But take today for example, Postman Pat worked for a while and then he brought me the tablet to indicate he wanted to watch something else. I go through the regulars….

Me: Fireman Sam?

Him: *shakes head*

Me:  Peppa Pig?

Him:*shakes head*

Me: Topsy and Tim

Him: *shakes head*

… (sometime later)…

Me: The Furchester Hotel ?

Him: *dramatically nods*

 Yippeeee! All I need to do is find it, put it on and he will be happy. Or not.

I don’t know exactly what he wanted this morning but it definitely wasn’t The Furchester Hotel (A shame because I’m so over hearing that screeching Norman Price on Fireman Sam and Special Delivery Service from Postman Pat!) Waving profusely at the screen,  jabbering away in his own mumblings and physically putting my finger on the tablet to turn it off. He was not happy. We went through the whole options again and again….and again! Each time him pointing and nodding to indicate what he wanted but when I put it on I was met with the same head shaking. A mind reader I am not (I have to remind his Dad this on a fairly regular basis)

Other Half: “Did you get me XYZ today, I’ve run out”

Me: “No, I didn’t know, you didn’t tell me”

Other Half: *mutters unrecognisable / words not to be repeated*

Me: “I’m not a mind reader!”

Sorry, I digress! 

The frustration is real. For both of us. Eventually he bursts into tears. Big. Fat. Unreserved tears. I hug him tightly and wipe away the tears and splodges of snot from his face and unfortunately my bare arms (gross!). He’s so frustrated that he can’t tell me what he wants. Frustrated because I don’t understand him. I’m sad because I don’t know what he wants. I think perhaps he is thinking of a particular episode he wanted to watch but without him being able to talk I don’t know.

This is becoming fairly typical. Him wanting something and me not understanding what. Of course, many toddlers are the same. They say one thing and mean another (My other half would probably argue I’m the same!). It must be so damn frustrating not being able to communicate exactly what you want.

To help with communication we are still working on the signing and the visual picture boards are work in progress. In the meantime, I’ll take the tears, lumps of gooey snot and the physical pinching, smacking and lashing out.

Today, I wish I was a mind reader.