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

 

 

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The good the bad and the ugly!

Anyone else feel like they are on a permanent rollercoaster!? Here’s all the aspects we would need to incorporate into a design if we had to build our own…

The Good Bits (the bits that make you scream happily, and make your tummy do butterflies!)

1. The Monster is the happiest kid I’ve ever seen.
2. We celebrate the small things.
3. He appears to be completely oblivious to any negativity.
4. He never fails to make us laugh daily.
5. He spreads autism awareness most places he goes!
6. He brings the good out in people.
7. He adapts well to most things.
8. He will randomly do something that will make you burst with pride.
8. On a good day everyone enjoys his company.
9. He can be super loving and cuddly.
10. He can nearly always communicate his needs in one way or another.


The Bad Bits (the bits where your heart pounds and you’re scared / apprehensive about what’s coming next!)

1. Disciplining The Monster is virtually impossible.
2. If you like sleep, you’re screwed!
3. “I know a song that’ll get on your nerves, get on your nerves, get on your nerves. I know a song that’ll get on you’re nerves. Get. Get. Get on your nerves”. AND REPEAT….


The Ugly Bits (the part of the ride you dread, but you know you have to go through it to get to the good bits!) 

1. It’s all just a waiting game. Nobody can give answers about how he will develop.
2. There is a constant battle against the system to get him the support he needs.
3. We still live in a judgmental world, there is a lack of awareness / acceptance and empathy for special needs.

Our ride would have lots of ups and downs, loop the loops and it would be loud and unapologetic.  You would keep coming back to ride it over and over because there are a whole lotta good bits going on that by far outweigh anything else, even if at times it doesn’t feel like it.