First Week of School

Imagine spending your whole life where, aside from a very small handful of people, nobody really gets you. Where you’re the only one struggling to get your needs met, and the only one who can’t talk. Where you are the odd one out. Then one day you go to this place [school] where everybody uses multiple communication methods – such as picture exchange, makaton signing and really simple, coherent sentences. Where other children are the same, the majority also non-verbal. They make the same noises, they flap, spin and sensory seek / avoid and everybody gets it, accepts it and helps to meet your needs. What a feeling of utter relief that must be. I reckon that’s how it must be for The Monster. Perhaps that’s why when every single morning I have asked if he is going to school he has nodded his head and said “yeeeaaaaahh”.

I don’t think I have ever been as proud of The Monster as I was his first week of school. A huge change for the whole family, but non more so than for my baby. One of the classic traits of autism is the need for routine so I was fully expecting the transition to be difficult. I couldn’t be more wrong *touches wood – it’s still early days*. He managed a full timetable. The most hours he’s ever done and he has never done 5 days before.

His first day he was understandably devastated when I left but he settled OK with the help of an iPad (I don’t reckon many places would’ve whipped out an iPad to play on to calm him down!?). Each day the drop off got easier and by day four I was leaving him at the school gates where a teacher greeted him and he dragged them off towards class without much of a second glance at me – charming!

On his second day he was taken on a minibus for ‘Adventure Time’ where they went for a walk around a huge park. Again, something he took in his stride, other than a wobble when initially getting on the minibus. That was to be the first of three trips out, he also went out to a sensory play place and to a tailored soft play place. What a fun timetable….no wonder he wanted to go everyday and it’s no surpirse that I haven’t been getting the super pleased to see me, bouncing boy at the end of the day like I am used to – I’m completely boring by comparison!

Something that hasn’t alarmed me, but has taken the teachers aback is his love of food and every day he has had seconds at lunchtime (I do feed him, honest!).  I am super grateful we don’t have the food struggles many autistics have, that said we are very much the other end of the scale where stopping him eating can be really challenging.

Part of me does wonder if he has been captured by aliens and replaced with a more helpful version of himself though! I snorted when reading this direct quote out of his diary:

“He’s quickly becoming our class helper! he’s wonderful at tidying up and follows single step instructions!”

Errrm, not at home let me assure you! I’m trying to convince them he’s just showing off in his first week!

We finished the week on a massive high when his teacher brought him out to meet me at the gate and he stood holding her hand beautifully whilst she told me how amazingly he had done and how great he is at getting his needs met. He has picked up their picture exchange system really quickly and has been signing to them as well as making some word-like noises. Proof that our early intervention and hard work at home has really helped. When you hear the words (in context of him going around helping everybody)

“Everyone loves him, He’s fast becoming everyone’s favourite”

you know you are raisining a little superstar and you made the best decision in choosing a specialist school. I’m almost certain it would’ve been a very different story from a mainstream school.

The fog has lifted. The future is bright and I am so excited to see where it takes him.


Letter to my sons nursery SENCO

Dear Hannah,

Before you rush off on your secondment to manage another nursery, I wanted to let you and everyone else know how much my family have valued you, particularly over recent months with the dreaded EHCP process. 

The Monster started at the nursery you work at as a two year old. We knew back then that he was different but we were still in the depths of appointments, awaiting a diagnosis but suspecting autism. Choosing a nursery and placing our ultimate trust in a place to look after our child with differing needs to a “normal” child was no mean feat. You were the Deputy Manager and the nursery SENCO, I knew I needed to see something in you that others perhaps don’t consider, I knew you would work closely with The Monster and I would need to interact with you more than most parents need to. YOU were the absolute reason we chose to send The Monster to that nursery. You know every single kids name and they buzz around you when you walk in the room all of them getting your attention. Your passion is evident and the needs of the children and staff alike is of obvious importance to you.

I’d be lying if I said it has always been plain sailing. There have been times in the past where I have had to have difficult conversations with you, it really bares no significance now but I have to say what complete professionalism you and the team have dealt with my grievances and how your reactions have actually had a more positive impact than the grievance in the first instance (that’s quite an accomplishment to impress the queen of complaining 😂).

I want to thank you for bearing with me when I burst into tears when you wanted to move The Monster into his pre-school class before I was ready (it really was the hormones!) It was the best move for him and he has come on leaps and bounds in that class. I want to thank you for all the one to one support you have given The Monster and all of your precious time I have taken up chasing up news of emails from various sources and various funding options.

I want to thank you for all your time in writing his reports which formed part of his EHCP, it is through reading them that I really got to appreciate that you “get” him. Likewise thank you for helping with the report I have written. I know this process has been a learning curve for both of us.

I want to thank you for being present in all the meetings we had at nursery with third parties. Those for me are difficult, it is hard talking about all the things your child can’t do. It is exhausting going over and over how your child has such significant needs that they won’t cope in a mainstream school.  I want to thank you for being the diplomat in meetings when I haven’t been able to hide my disappointment and anger when things have been delayed by weeks / months and the right people haven’t even turned up for a meeting.

Thank you for all the behind the scenes work and meetings you have had concerning The Monster and his development and for offering to come back for meetings etc moving forward.

I’m sure I won’t be alone in wanting to thank you for being one of the spearheads in giving our children the opportunity to attend an Ofsted rated Outstanding nursery. 

Best of luck in your new role (but dont take too long to come back!) you will nail it. You’ve not just been a Deputy / Acting Manager, You’ve been a friend and have made my life and The Monster’s life easier, which definitely hasn’t gone unnoticed.

Thank you so much,


The Monster’s Mummy
X X X X X 

School Runs and Shopping Trolleys

​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. 


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?