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
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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

 

 

Is it OK to hate my child’s autism? 

I love The Monster more than I will ever be able to describe. To Infinity and Beyond. To The Moon and Back. I would lay down my life for him. You get the picture. But that doesn’t mean I always like what his autism does to him. Ouch I feel guilty even writing that. 

It’s taken a long time to admit to myself that there are things that I plain and simply don’t like.  What autism does to him. Of course autism isn’t all bad and I wouldn’t change him for the world. If he could have a magic pill to make it all go away I don’t think I would give it him. 

There are only two things that I really don’t like. Only two, that’s not bad considering it has a bearing on his whole being. 

  1. Speech. I hate that it has ripped away the ability for him to talk. I don’t know if this is forever but I am a realist and I know that he perhaps won’t ever talk, at least not like a ‘normal’ person. I hate that I might never hear him say “mummy”, he might never be able to tell me he loves me. Telling us he is hurt, sad, happy etc can be done through other means, i.e. body language, signing etc but telling us why is more difficult. I might never get to hear if he has an accent (although to be honest, who wants a brummie accent 😜). I hate that we might never be able to talk over the phone. I even feel sad that his friends and peers can call me by my name yet he can’t. 
  2. Inability to follow instructions / listen! The Monster does what he wants, when he wants contrary to what we tell him. We are forever giving him instructions, more often than not for his own safety. We yell “slow down” a lot. He runs everywhere. we gasp at all the near misses he has because he is going to fast and not looking where he is going. How we haven’t ended up in A&E yet I don’t know*. I feel like I am constantly giving out a negative vibe since “Don’t do that” and “No” are probably the most widely spoken words in our existence! He doesn’t learn from experience so we have to repeatedly give out the same instructions. For example: “Don’t touch the TV” – he’s already broken two and do you think we can stop him messing with it? Not a chance. The most stressful thing in the world is visiting people and new places since instructions to not run wild around peoples houses, to sit and chill and / or play with toys falls on deaf ears. 

    And you thought sleep was going to be up there with the things I hate didn’t you!? 

    Would you admit to things you don’t like about your child? Does it make me a bad person for not liking these things? I don’t think so, I feel guilt of course but autism isn’t all bad. Challenging yes. Happy, unpredictable, fun, quirky and fascinating. Most definitely. 

    *in hindsight I should’ve taken him to A&E when he found the only bit of metal in a soft play. He fell and hit his head good and proper. Even now, about 2 years on you can feel the lumps on his forehead and if he bangs his head (quite often) it’s a cert it will be in the same place!