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.

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.

Autism-proofing – The quirky way!

Sometimes when things break in our home they do so in a way that makes our home safer for our autistic son. Now I’m not suggesting y’all go around breaking things to autism-proof your home but sometimes there is a silver lining when things go kaput! There are several examples that spring to mind in our home:

1. The hot tap on the sink in our bathroom is so stiff we can’t turn it on. Our son has a real affinity to water and wouldn’t think twice of using the hot tap so it’s safer if we don’t attempt to fix it. Cold washes all around….brrrr!

2. Several door handles throughout the house need adjusting. We can operate them with ease but our son can’t open them once they are shut as he can’t pull the handles down enough to operate them. There are definite benefits to cordening off areas!

3. Our front gate jams shut and you either have to kick it or body slam against it with brut force to open it. This is my favorite ‘safety feature’ as it means he can’t out of the garden whilst locking the door etc – It’s also amusing watching cold callers and people delivering menus and other such tosh trying to open it!

4. The baby gate at the top of the stairs has broke (yes we still need to use baby gates even though he is 4). It’s locking mechanism doesn’t automatically open when lifting the handle and needs to be done manually – an added safety feature in our eyes!

So you know the saying “If it’s not broke, don’t fix it?” Well on our case the opposite is sometimes true – “if it is broke, still don’t fix it!”

Do you have any quirky safety features in your home?

The Love of A Brother.

Increasing the size of your family is one of the biggest life changing decisions anyone takes. Deciding to increase the size of your family when you already have a child with special needs, in our case nonverbal autism is an epic decision. We already live in a challenging world, a world of unknowns but bringing another baby into the world was delving into the biggest unknown we have ever faced.

Whilst the future is uncertain and welcoming a second child with his own health conditions has been at times completely overwhelming, one thing that is a clear certain is the benefit our 7 month old baby has had on our 4 year old autistic son. For the benefit of this I am going to narrow it down to just 5 key reasons.

Gotta be honest, this wasn’t clear from the get go and the day we brought a baby home our four year old took hostage in his room and refused to come downstairs. Uh oh, what have we done!? It has been a slow burner but it is obvious the adoration for each other and their bond gets stronger all the time. How do we know? Their eyes follow each other around the room and their faces light up in each others presence. The baby has to come everywhere with us and has his own personal protective bodyguard if anyone else wants to coo over him.

Bumped your head? Snuggling into the baby will make you feel better. Can’t figure out how to rewind your favourite singing parts on TV? Pass the baby the remote and he has it covered. Something broken? Hand the baby your toy screwdriver and broken toy and he will fix it in no time. Sneakily took some crisps out of the drawer without Mum and Dad knowing? Give the baby the packet and he will open them for you. Obviously we know that a seven month old can’t do these things but it is utterly adorable the way the four year old thinks he can do just about anything.

Sharing things is something that doesn’t come easily for our autistic boy. He is protective of his toys and trying to persuade him to give you one of his raisins etc is almost certainly a no go. Yet, he will do all of this with his little bro, he actively shares without needing to ask. I imagine this will change once he is mobile and wanting all of his toys! Sharing activities like dancing is the best and source of lots of laughter and all around happiness.

A typical autistic trait is not being able to read emotions. Our four year old really struggles to differentiate between all emotions, often finding people crying absolutely hysterical. However, he is starting to recognize when the baby is grizzly and will often just go and sit with him and stroke him. He will get him his dummy if he cries and he definitely seems to recognize the happy gummy smiles and squeals. If he is recognizing these emotions in him, then hopefully he will pick up others emotions and body language too.

In our experience having a baby has had such a positive impact on our four year old and we are so excited to watch their bond grow as they both get older, with mobility and first words looming it will be interesting to see if these have any impact on his progress.

There we have it. We have an absolute zero pressure policy on their relationship and will go with the flow with how the future pans out. We celebrate the tiniest of achievements and we don’t dwell on the imperfections. We might not be your typical family but it’s so true that love needs no words.  

School Runs and Shopping Trolleys

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

Dear Prime Minister…

Dear Theresa May PM,

Presumably, you get many hundreds of letters with regards to state benefits. I feel compelled to write following some unexpected situations life has thrown at our family.

Let me explain…

I’m educated to degree level with a Business Management degree and over a decade of post-graduate work experience where I worked from junior positions to middle/senior management in private sector organisations.  I am a dedicated, loyal and hard working person and at 35 years young and have many, many years left in me to advance my career, contribute to society and most importantly (personally) to support my family and give them a good life.

In 2013 I gave birth to a beautiful boy who I had longed for, way before his arrival. He was, and indeed is perfect. Following some evident differences between him and his peers when he was still only small we embarked upon a long (two year) diagnosis process where eventually it was confirmed that he has Autism Spectrum Disorder.

He is now four years old and is nonverbal. He is not toilet trained. He has absolutely no awareness of danger. He does not sleep well (ever) without medication. He has no interpretation of emotions. He has more energy than anyone I have ever met. He should be starting school in a few weeks but he is not as mainstream schools can’t cater for his complex needs and despite the fight I put up to get his paperwork in place for a specialized school, I was defeated because the Special Education Needs (SEN) budgets are so scarce and workloads so vast that they can not meet the legal time frames to get things in place.  He needs around the clock care. He is my full-time job. This year we also had another beautiful baby boy. He has his own health conditions which I won’t go into other than to say he needs frequent medical check-ups and will do (likely) for life.

Nobody plans on becoming a special needs parent. Nobody. You don’t visualize the future caring for your child for the rest of your life. Inadvertently you are training them to be independent from a very young age.

Because of all of the above, I am unable to get a regular job. I want a job so desperately but only being available for a few hours a day, term time and with the likelihood of unforeseen absences due to therapy  / medical appointments and sheer exhaustion after stints of months of severe sleep deprivation I don’t seem such a sexy choice for any employer.

I’ve recently resigned myself to having to consider the Government funded Carers Allowance. I am insulted. A mere £62.70 a week is pitiful.  Particularly when you consider the hours of above and beyond care needed, equating to what, in my experience is much more demanding, tiring and time consuming than any job I have ever had. To qualify for carers allowance you need to care for someone for at least 35 hours a week, let’s say that you care for someone for just 35 hours that equates to £1.79 per hour! And let’s be honest when you live 24/7 as a parent of a special needs child, you are never off duty. Never.

As I’ve already pointed out, I want to work. Actually the dream is to go solo and to set something up to benefit others who are in similar situations to myself. To provide a service that is so desperately needed so that people don’t  feel so alone and isolated as I have the last couple of years. To bridge the gap in my community where funding has been stripped so much that disabled people are excluded from society for outrageous reasons like there not being any Changing Places toilet facilities. I spend, quite literally hours every day thinking about this and how I can make it a possibility. But the reality is hard. Made even harder because in the time I have been unable to work I have spent savings and have some debt so again, I appear unsexy to any bank whom I would need to back me. Let’s not beat around the bush, there would be no surplus to put aside from the Carers Allowance to help.

I am becoming reliant on the pittance you provide – through no fault of my own with no future in sight. More is offered for Job Seekers Allowance. Why? Why give more money to people that can work – but often choose not to – and I apologize for generalizing. I know from personal experience this isn’t always the case. I am stuck and angry. Angry that more isn’t being done to help some of the most vulnerable in society. Angry that because there aren’t enough services to help my son so that I can get a job more easily.

I ask that you consider revising the Carers Allowance, one day PM you may need a carer, or you may be the carer. You won’t choose this, circumstance will. I ask that more is done for carers, more help and support is offered so that people like me don’t feel a burden to society. The thought of this being it for me is petrifying.  How is it that I know more about prisoners being given help and support to be integrated back into society when I know of nothing that helps carers?

Kind Regards,


A Special Needs Mum