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.


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




I’m taking part in the SEND 30 Day Challenge.  Today, day 2 is titled 10 things you don’t know about. 

I’m going to focus this on monster-proofing. You may know this better as Baby-proofing / child safety. The two are similar but NOT the same, as other parents with ASD (and other) diagnosis’ may also understand!

Please note this list is relevant for us here and now. It will change over time as our four year old ASD guy (The Monster) gets bigger, stronger and potentially more vulnerable

1. The best place for a TV is on the wall (RIP TV #1&2) thus eradicating the ability to knock pull it over. NB being on the wall does not make it safe, but rather makes it safER. You may want to consider a TV screen protector or armor to protect it.

2. Many ASD children are runners / escapists. Door and window alarms are quite literally life savers for many. We don’t need to invest just yet but they are definitely on the radar for later.

3. Soft furnishings are scarce and out of reach permanently.  If left within reach they get moved, put in mouth, broken, knocked over, played with etc.   

4. Our hot tap in the bathroom does not work. We have deliberately not fixed it to rule out the risk of The Monster scalding himself. He loves water and playing with taps is a must.

5. We will hold onto The Monster’s hand or use reigns / pushchair / stroller etc when going anywhere. He is not safe enough to walk in public / busy places without either being strapped down or in physical contact. 

6. I conduct Risk Assessments constantly! A visual inspection Is a minimum everywhere we go.  I see danger in things that nobody else will.

7. The Monster’s spatial awareness is limited so he still has a bedrail and  corners and sharp edges around the house are padded to prevent accidents, especially as our space is small and he can he sometimes stims (spins, bounces etc).

8. Medicines / lotions and potions / cleaning equipment etc is locked away or kept completely out of reach. You would probably expect to do this for any 4 year old, but this will likely be a permanent fixture in our house.

9.  Stools, chairs or anything else that can be used as a platform to reach  or climb something are closely monitored. The Monster is fearless and sees no danger in things.

10. With The Monster due to start school and getting a bit more independent we are looking at getting a tracker for him. In the event that he gets lost or runs off he wouldn’t be able to tell people anything as he is non-verbal. We need to be able to locate him quickly if this ever happens.

So there you have it. Are there any things you would add?


Special thanks to https://www.mumoam.co.uk for hosting the challenge.