​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? 

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! 

Bemused, Baffled and utterly Bonkers! 

We all have our quirks don’t we? whether we’re on the spectrum or not. We all do something that to others looks or sounds absolutely bonkers. For example, I have a completely irrational fear or electric (ironic given I’m from a family of Cable Jointers AKA absolute nutters who work with high voltage live electricity!) My fear leaves me scared of plugging / unplugging electrical appliances and I will; whenever possible avoid it. I can’t remember a trigger as such, but the usual sort of thing like pulling a vacuum cleaner so the cable hangs out of the plug socket and trips out puts me on edge. There was no point that I remember being cool with a plug and then suddenly felt scared of them. What a weirdo I am huh!?

15540494_10157869517400032_149687323_oThe Monster has many quirks but there is one that has baffled me for a while now. In the summer we took our first family holiday to Devon.  Nothing outrageous about that.  He slept in his blow-up airbed as he does when we travel anywhere. To avoid any catastrophic damage to his sleep (let’s be honest it doesn’t take a lot to get his knickers in a knot with sleep and to disrupt him for months on end) we kept his bed at the foot of our bed rather than in the spare room, so that if he woke in the night he would feel safer knowing we were there and would settle quicker.  Major breakthrough, it worked! He slept relatively well much to my surprise.  It’s since we got home things got me completely bemused.

Pre-holiday, The Monster would get himself in and out of bed.  We would often spend hours from telling him it was bedtime to him actually settling into bed and going to sleep. He would be up and down like Tower Bridge.  All of his toys we’d spent 15 minutes prior putting away were out again. It would generally be a battle of him refusing to stay in bed and us going in and out physically putting him into bed, but alas by the time we had so much as left his room his tiny little feet would be bouncing around his room again, and on particularly irritating occasions he would be hot on our heels running around the entire upstairs….arrggh!  The benefit of this routine was that over time he learnt to get himself back into bed when he got tired, or if he didn’t he would fall asleep on his floor playing with his toys and we could manage a transfer to his bed relatively easily.  The downside, it wasn’t uncommon for him to still be up at 21.00, despite the bedtime routine happening at 19.00.

For some reason which I am super grateful for, The Monster has never understood that he can get out of bed in the middle of the night.  That means he doesn’t come running into our room at all hours…hoorah! It does however mean that I have to make the commute to his room for his frequent wake up calls at all hours of the night.

Each morning The Monster would wake up fresh-as-a-daisy and bounce his way into our room.  I love how romantic this sounds.  In reality it involves a 2 1/2 stone fireball with absolutely no sense of the word ‘ouch’ or understanding of ‘ your standing on my hair / head / boob / leg etc’  more often than not we get a remote launched in our face to put cartoons on and often when I open my eyes he is stood about a millimeter from my face signing please / thank you holding my phone to look at videos of himself (he’s not vein at all!!)

Since holiday though this has stopped. All of it. From the day we got back, approx 3 months ago.  It’s like he doesn’t realise he can get out of bed now (even though he will happily jump on and and off it during the day). I am utterly baffled as to why? Bedtime routine is now dreamy!  We follow the same routine we have since, well forever only now when we leave his room and say “night night” he STAYS IN BED.  Most of the time he turns over and goes to sleep. What the actual **** is that about!?  if and when he wakes in the night which still happens pretty regularly I can just go in and tell him to go back to sleep more often than not (probably jinxed that now!)

The thing I find really bonkers is that he no longer bounces his way into our room fresh-as-a-daisy every morning.  Despite me making it sound hellish, I miss it.  He whines until one of us goes into him, he will jump out of bed if we stand by his door and poke our head around and then he happily hops over to our room.  It’s not like he wakes up grumpy, I can hear him babbling away to himself and occasionally will call him to come into us.  Queue the meltdown.  I’m not talking a whinge, i’m talking involuntary sobs, the sort that take 15 minutes to go.  It’s bizzare, he is petrified that he can hear us but can’t see us.  In the 3 months or so that we have been back, he has only come into our room on his own accord twice.  How weird is that?  I don’t know if there was a trigger but our whole routine around bedtime turned on it’s head.  I actually much prefer it now and I’m feeling a little bit uneasy that I am about to jinx it all by throwing it out there for the world to read about it!

20160610_183554Perhaps we need to book another holiday, we might crack sleeping through the night next time…..I know, I know, a step too far!!

Any ideas on why the sudden change?  I assume it is linked somewhere to his autism, maybe not. I have no idea! What have you been bemused, baffled and found utterly bonkers by what your little one have done?

 

Welcome to our world…

Way back when my cheeky little boy was only one,  before his tiny feet had even took their first steps his then childminder raised concerns about his social awareness and his communication skills.  Never had the words “He’s hard work” been such a relief. I thought all children were this challenging, afterall I have nothing to compare him to.  Being told that he was “the hardest work out of 20+ children” on their books was music to my ears!
Armed with concerns about how he had tunnel vision, didn’t listen nor follow commands amongst other niggles I approached his GP who then referred us to a Paediatrician.  Since then it has been a two year roller coaster of hospital visits, tests, observations and therapy sessions. 

Today marks the last observation before diagnosis day. 

The day we sit together with a consultant and team of people to go through in detail what the diagnosis of our precious boy is.  We have finally been told he is on the autistic spectrum (despite having known this for a long, long time but with no one confirming nor denying it), so very soon we will get to find out how this will impact on his and our lives. 

We have already started making provisions for schooling and there will be many, many things we won’t know but it helps having a diagnosis as we will have help and support that we have otherwise been unable to access. If our journey can help anybody, then I want to share it.  

Here is just a snippet of how life with The Monster rolls!….

The Monster is a 3 ¼ year old, cheeky, happy and very busy little boy.  He can’t talk, other than to say the words car, gone and go (when he feels like it). Despite not being able to talk, he is VERY noisy!  He communicates by pointing (which happened over a 18 months  later than most children), pulling at our clothes and excitedly grunting at us.  We’ve worked hard to learn sign language (Makaton and some BSL) to allow two way communication. A challenge in itself when he makes little eye contact.  I often feel like I am signing to myself and then weeks later he indicates he must have seen me as he picks it up!  He can’t sign a lot but can say (through sign) things like “more”….you have no idea how important this one is!  More food, more playing, more food, more singing, more food, more Paw Patrol, and did I mention more food :)!   He can sign car, tell us if something is hot amongst the more basic gestures such as waving, clapping, nodding and shaking his head.  He understands everything we say.  Actually we have to talk in code and now for some things…mention raisins, the shower or van and he will be tugging at us to go to them! He can follow commands, even when out of context. He’s really quite a smarty pants considering he is non-verbal and communication is difficult for him :).


He can not and will not walk.  

He has two speeds, fast and faster!  He didn’t walk until he was 17 months old and boy he has made up for the small delay in not using his feet! He spins in circles and he shakes his head from side to side because he loves the feeling he gets from it. We spend a lot of time gasping in our not especially big house where he is always only millimeters away from a fall. He falls over quite a lot because he is always in a hurry…I also blame his Dad for his ginormous feet!

Imagine a world where you can’t read emotions.
 

A world where you don’t know if people are happy, sad, angry, upset, hurt etc.  This is how it is for The Monster.  He laughs a lot and fills our lives with happiness but he struggles to differentiate that between any other emotion.  This makes disciplining him virtually impossible and is probably the thing I struggle most with.  Of course, toddlers push boundaries, they test the water and they learn from doing this…he doesn’t learn!  He has an obsession with doors and despite one actually closing with his finger in it, they still fascinate him! Trying to tell someone you are sad because for the second time in a year they have broken your TV falls on deaf ears (he has had 4 hearing tests and a sedated hearing test and there is nothing wrong with his hearing!). Crying your eyes out because you have been pushed over the edge at a toddler class where it seemed only your child was misbehaving goes unnoticed, yelling because for the umpteenth time in 5 minutes you have asked your child not to spin on the bed because they could fall and break their neck is a game and cause for an hysterical outburst of laughter.

Sleeping’s cheating has definitely been the case in our house for the entire of The Monster’s life.  

His Personal Best is sleeping through for 12 consecutive nights.  We have suffered sleep deprivation like you wouldn’t believe.  I have watched Peppa Pig at every single hour of day / night. I have cried myself to sleep out of exhaustion.  I have out of pure desperation called health visitors in floods of tears begging for help.  I can honestly say I have slept less in the last 3 ¼ years than I did in the entire 10+ years of the party days (taking into account two girls holidays, uni and the days I used to go out on a work night until 5am and still get to work at 9am the same day!) There is nothing worse than lack of sleep. I survived months on end on 4-5 hours of broken sleep per night.  Him wide awake for 2-6 hours a night and nothing, I mean nothing would get him to sleep, despite him being obviously exhausted.  

I’ve tried every sleep technique known to man.  

The last three nights alone I have lost around 7 hours sleep! I CANNOT WAIT for the day he wants to stay in bed all day, when he wants to be a lazy teenager…I am going into his room banging pots and pans, demanding he gets up and plays, screaming and crying!
The Monster loves water, he is pretty awesome at swimming and getting help with the washing up is a treat!  He loves having a wash and brushing his teeth….bet that changes when he’s a bit older! I often have to stop him drinking rain water when playing in the garden.  Any shape or form, if he can get wet, he will. It’s his “thing”, that and playing in daddy’s van!  He gets obsessed with things very quickly.  He only has to do something once in a particular way and that’s how it has to be done every time. He is all about routine and breaking that can be quite disruptive. Something as trivial as having someone new in the car with him can cause a complete meltdown, and I am currently struggling with the changes to his nursery hours which have had a big impact on his confidence in all other areas.


The reason I have finally spoke out about this is because whilst I don’t want autism to define him…

I don’t want it to go unnoticed.  This will come as news to friends and family members as we haven’t gone into detail with many people. If you’re one of the few that I have gone on, and on, and on to about our journey, I thank you. You are special and I appreciate your support and on exceptionally rare occasions a shoulder to cry on when things get too much! I want to shout from the rooftops if he does something that to everyone else seems no big deal…if and when I hear the word Mummy or Daddy  out of his mouth I will want to tell everyone!!  

I want people to understand autism more and rather than being judgmental when you see what appears to be a parent not being able to control their child, be a bit more compassionate.   

I look like the parent that can’t control my child and in honesty,  I can’t but that’s not because he is naughty, he has never done anything really naughty.  It’s because he doesn’t understand. The world is a very different place to him, and whilst most go on the quickest journey from A to B we are going the scenic route….we may go A,C,D,E but we will get to B eventually having taken in every sight, smell, twisty turn along the way, so we’re going to sit back and enjoy the ride….

life will be anything but boring!