Days to Remember

It’s not often we do family days out, I’m  talking about the ones you need to plan in advance, book tickets and often part with quite a sum of money. Trips to theme parks, the theatre, cinema and the zoo for example are often off limits. 


There are so many variables that we can’t predict for these days, like how busy will it be? Will there be changing facilities? How will we travel around? What happens if the weather is bad…or too hot? What if there are huge queues, can we skip them? Are we tied in to a specific date and time? What if we have a terrible nights sleep before? Of course, these are probably the sort of things that everybody thinks. The difference is that for most people all of these things are manageable. For someone with autism like our four year old, any one of these things can quite literally ruin his day. I’m  not talking about putting him in a bit of a grump, I’m talking about a meltdown and days to regulate afterwards.  

Sometimes it’s just easier not to bother than to give it a go and see how it goes. I’m  to blame for that. Pick you’re battles and all that jazz, and quite frankly sometimes I don’t want to upset the apple cart. It’s  stressful for everyone when things don’t  go to plan, none moreso than for our son, although in the midst of him lying on the floor and refusing to move it can be difficult to remember that he is the one that is struggling. 

Our son starting school has been a huge turning point, they take him to lots of places and they manage. I have yet to receive a report where he hasn’t coped in any environment they have put him in….further evidence that it is me holding him back! Soooo, in a bid to make this year filled with lots of fun, I have put my big girl pants on and booked some exciting things to do. So far we have the following things in the diary:

  • In The Night Garden Live 
  • Bing Live
  • Justin’s Band 
  • A few days away

When booking tickets for In The Night Garden Live there was a box to fill in if you had any special requirements. Already feeling a bit nervous about having to queue to get in and then getting stuck in the middle of a row, I suggested that we would appreciate fast track entry and an aisle seat in case we needed to make a sharp exit. Quite honestly, it’s something I didn’t think they would honour as in my experience with other things there is a real lack of empathy and understanding of autism and how small adjustments can make a huge difference to families like ours. Fast forward just 24 hours and I got a reply. I want to paraphrase but I can’t  as it was an amazing response. So here it is in all its beautiful glory: 

…We’d like to do what we can to make your day as easy and enjoyable as possible. Normally seating is unreserved, but I can reserve you space in the front row of Standard, on the edge of the aisle if this interests you? 

We find others who are on the autistic spectrum benefit from the front row of Standard as the row is a little bigger than other rows, giving you a bit more breathing room. We also find that as the first row of Standard is the 6th row overall, this helps individuals with sensory overload concerns, as in this area they have a clear view of the show without it being too overwhelming. Please be aware that the atmosphere is very relaxed and you are free to leave and return to your seats at any point during the performance if you need to. There is even an area behind the seating stands with a live feed of the show on some screens, if you want to continue watching the show from a further distance. 

I have already arranged a queue jump so you do not have to queue amongst the crowds. When you arrive at the Showdome, please speak to a member of staff and they will take you directly to your reserved seats.

Everyone is different so please let me know if the above suits you and your needs and I will pop it through for you.

Faith in humanity well and truly restored. I was choked reading the email. 

So this year we are making memories. Good memories and I can’t wait. I reckon our son will be pretty excited once he knows he’s  going to see some of his faves too! 

Now….just to put a call in to a couple of his other favourites, namely Coldplay and George Ezra to see if they can sort something equally as amazing for him too, hehe! 


I have a secret. The truth about how autism affected me. 

It may seem that I share a lot of personal stuff on here but psssst, come close….I’ll tell you a secret – I don’t share everything.

I mentioned at the start of the year, I am going to give an honest account of our experience so that means letting you in on something I haven’t written about before. It’s about a bumpy time I went through a few months ago…


The strains of autism have made me feel completely powerless, exhausted and defeated. I got to a point where I needed help – quite literally for my sanity. I felt as though my mental and emotional health was starting to suffer. I was tearful a lot. Would literally cry at every battle we had (and everything can be a battle some days!), I was emotionally drained from the constant defiance in getting anything done, physically sore from the kicks, pinches and slaps (who knew a 4 year old could be so goddamn strong?) The silence from actual conversation was deafening. Ordinarily he should, by now be saying “Whyyyy?” after everything and really questioning the world around him.  The permanent need to ask closed (yes/no) questions (and not always getting a response) was overwhelming.  I was bitterly jealous of the picture perfect lives people portray through social media and of my friends with ‘normal’  children, particularly those with younger children who were now hitting milestones that for us were still out of reach – possibly always will be. Heck, my soon to be one year old has hit milestones I’ve been working on for ages with my 4.5 year old…that’s tough!  I was starting to resent my child. Actually, it was his autism I resented afterall that’s what was making everything feel so difficult. SO INCREDIBLY DIFFICULT.  The 24hr on call demands of autism was all consuming and it zapped everything away that I was before. I had nowhere to escape so I cried. A lot. I WAS NOT COPING. Many professionals have questioned what support I get having only seem a 5 minute snapshot of how bloody hard the simplest of tasks can be. Yet none of them offered any help when I said I didn’t receive support, as though it was always someone else’s bag. They pushed me from pillar to post always saying “…I’ll pass your details to so and so…” and all that happened was I got so confused with who knew what and I never really knew what roles everyone was fulfilling.The only after care after diagnosis was a 2 hour session about autism.

A diagnosis is LIFE CHANGING.

The entire ending to your life story changes, every chapter gets re-written to accommodate the challenges that autism brings to daily life.  They liken a diagnosis to a period of grief. It’s so true, I’m not sure that will ever go.

The turning point… 

I received a call from nursery one day to say I needed to pick him up. He had headbutted a table out of frustration and bust open his eyebrow and needed to go to get checked out. I remember going to collect him, tears absolutely streaming down my face. 

But it wasn’t because he had hurt himself. It was because I was robbed of the extra few hours to myself, because I had to contend with the usual challenges of having him at home. 

My boy was hurt and I was more concerned about not getting my free time away from him. Wow

After that, I knew I had to get some support from somewhere.  I spoke to my partner for the first time about how overwhelming everything had become and health visitors and I was finally assigned a Support Worker. All of this coincided with the birth / early days of The Small One. I was initially cautious in talking about my feelings because I knew people would automatically assume post natal depression. I knew it wasn’t that….the baby was the least of my worries, he was easy / low maintenance! For the first time since diagnosis I felt a bit looked after (although to be completely honest the support worker did very little in offering actual support, but at least she was a sounding board and just another adult to talk to in days when I couldn’t get out and about). The days started to feel brighter.

These feelings, whilst not present now are re-occuring. Christmas was incredibly difficult for me this time around, a time for spending time with family and friends. We managed a couple of stressful days with family before we packed up and headed back home early. I cried on the drive home as once again I hadn’t been able to see my best friend whom I have only seen once in a year and because my other BFF’s were having a New Years bash together and there was no way that attending would be feasible. Averaging less than three hours sleep a night was also having a huge imapct!

There are times I think will always be tough, like Christmas, birthday’s, significant milestones and of course the reminders that our child is a bit different will always be there to pay a visit and catch you off guard when you least expect it. 

Why now?

The reason I have shared this now is because right now I am happy. For the first time since I can remember I have nothing to worry about on the autism front and it feels good. And I know that people reading this have been in the same position. If that’s you, I am sending a massive virtual hug and telling you it will be alright. Remember to get to the rainbow we have to have the rain….but when the rainbow appears it will be so bright and beautiful that all the rain will have been so worth it.

​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?