You Don’t Know. My complaint to Lloyd’s Pharmacy.

Dear Lloyd’s Pharmacy,

You Don’t Know:

You don’t know what kind of day I have had, you don’t know that my 3.5 year old son and I have spent an hour and half this morning at hospital whilst I had an antenatal scan. You don’t know that I was dreading that appointment because I had no alternative but to take my son with me, knowing full well he would be a handful. You don’t know how pleased I was that the only mischief he caused was turning the scan monitor on and off throughout the scan and lining his toy cars up on top of the bin, despite me telling him countless times it was dirty.

You don’t know that we went straight to the doctors so my son could get seen for his spreading rash immediately after my hospital appointment.  You don’t know the relief I felt when being told there was a zero minute wait, and then my rising anxiety as we were still waiting to be seen 25 minutes later. You don’t know that during this time I struggled to keep my son entertained and he fell over not once but twice in the waiting room resulting in lots of tears and uncomfortable cuddles as he clung to my 32 week pregnant belly.

You don’t know that our visit to the pharmacy was the third outing in the car today. The third time I had heaved my son into his chair whilst he struggled as he thought he should be driving.  You don’t know that I was dreading my visit to Lloyds, not least because my son tries to rip all the products off your shelves and stack them his very own way.  You don’t know that the reason I took him out of the pharmacy to watch the buses outside was to save your pretty displays.  You don’t know how much I wanted to get home and back to our ‘safe haven’.

You don’t know the rising anger I felt when your practitioner handed me one prescription and a sticker for the other telling me it wasn’t in stock but would be available to be picked up later this afternoon.  You don’t know that I didn’t want to come out of the house again today, that I didn’t want to contend with getting shoes on and getting into the car again for my son to once again try to re-arrange your shelves and for me to try and persuade him to watch the buses again.

You don’t know that by giving me the prescription back I could have walked 5 doors down the road to an alternative pharmacist and got the prescription there and then without the hassle of an extra journey to my day. You don’t know how livid I was when I asked for the prescription back instead of the sticker and you refused to give it me because the order had been placed leaving me with no alternative but to come back and collect.  You don’t know that I when I returned an hour and half later I would be expecting it to be ready, you then told me it would be ready after 16.30 (another 3 hours to wait). You never told me this when you gave me the sticker in the first instance.  You don’t know that when I tried to complain whilst nursing my 32 week pregnant belly and my son on my hip (to save your shelving once again) that tears were pricking my eyes because facing coming out again was the last thing I wanted to do.

You don’t know that my son is autistic and such journeys and eventful days are stressful.  You don’t know because you assumed.  You assumed I would be cool with receiving a sticker instead of my sons cream. You assumed that it would be ok for me to watch him itching for a further 4.5 hours and him not understanding me telling him not to.  The staff were rude when I complained even though the error was on your part.  You should have given me the option of going elsewhere, you should have told me what time it would be ready.  You don’t know this is the second time in so many days that you haven’t had the stock I needed.  You don’t know the little independent pharmacy 5 doors down have received my business and will continue to do so.

You definitely should know customer service. Shame on you Lloyds.

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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?

 

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!