Wednesday 7 March 2018

Sorry folks I am out of lemonade

Hi folks

I just thought I would pop on to give you all a quick update of where we're at.

I was intending my next post to be entitled 'life gives you lemons you make lemonade', but right now I'm feeling more like a squeezed out, dried up bitter old lime than a refreshing glass of lemonade... so that one will have to wait for another time I'm afraid!

The house is silent, and the rain is drumming against the window. Its blumin' freezing and dark and I'm waiting for the coffee hit to kick hasn't yet happened so I'm off to make myself another cup...

Back now.

So, its currently 3.30 in the morning and sleep evades me yet again. I am beginning to look like the walking dead, no amount of concealer is gonna hide these bags under my eyes. (So please excuse any typos you may spot as you read this!)

I am still battling on to get my son the education he is entitled to. My quest has now broadened to legal advice, complaint letters and all things negative. I really don't like having to go down this route, but I feel like we have been backed into a corner with no choice really.  Dealing with this crap just slowly wears you down doesn't it, and it's hard to stay positive when all you seem to face is brick walls in your way.

I'm not sleeping, and my mind and body now feels like a bloody washing machine stuck on a never-ending spin cycle, which won't be helping me feel any better about it all because I'm just so bloody tired. It really is exhausting. Every day is filled with emails flying this way and that, phone calls and therapy. And then when all that settles down and I try and sleep my mind kicks in with all the things I have yet to do, the frustration at the whole situation and the worry of how things will develop.

And all the while still dealing with daily life. A Teenager going through GCSE'S and the incredible stress she is under. The cooking and cleaning and ever-growing pile of laundry. A dyslexic daughter who is struggling at school and feels like she won't ever achieve anything. Bills to pay and trying to launch a new business venture all at the same time.

Trying to keep focused on what I am eating because I don't want to undo all the hard work, I put in last year losing all that weight when really all I want to do is eat my weight in chocolate and crisps and hide from the world under a blanket watching Netflix.

We are also really lucky to have been referred to the disability social care team (I managed to get the referral done myself ... at my own request) but even that adds another layer of worry to my saturated brain even though I bloody wanted it in the first place and know we need it!! Irrational stupid things like... I have to make sure the house is clean and hovered when the social worker comes, what will they think of my parenting, and there are far more people out there that need more help than we do so I don't want to waste their time.

Crazy isn't it the way we over think and over worry everything.

So right now, folks I'm really sorry that it isn't refreshing uplifting lemonade that I'm pouring out to you all today. And the last thing you probably need is to hear me whining. So, I will shut up now. I have moaned now far too much for anyone's liking.

Maybe after a decent night sleep (ha ha wishful thinking) I may be able to squeeze out a few drops of the good stuff for you next time.

Because there is a lot of good stuff.

I have some amazing people that are fighting my son's corner with me and amazing family and friends that are keeping me propped up. And my son's mental health has improved drastically these last 7 months he has been off school. So, I have to focus on that and take each day, heck each hour as it comes! Because there is a lot to be thankful for. I will keep fighting.

So, I will be back soon to let you know how things are progressing, please keep your fingers and toes crossed for us all.

Take care folks
With much love
Mrs M xx

Sunday 28 January 2018

A letter to the people making the decision about my sons future....

Those of you that know our situation will know that my son has been out of school now since last summer. This is a copy of the letter I sent to the Local Authority last month a few days before a panel meeting...

To Whom it may concern,

Today, my sons case is being presented to you, the panel.

And as procedure dictates that I can’t be there to highlight his situation to you in person, I wanted to ensure that the personal side of our story wasn't ignored. Because it doesn’t matter how many professional reports are produced for you today; or how many assessments you read, you will never truly understand the full extent of the trauma we have all faced as a family because of my son not fitting into your education system.

You won’t get to see the challenges my son has had to overcome living as a child with complex anxiety, and the social difficulties he faces due to his autism. How his anxiety affects his every waking moment and prevents him from living his life. Crippling him to the spot and ruling his actions and emotions.

Or how it must have felt for him day in day out attending a school that didn’t understand his needs. A school that tried to bend him to fit into their way of doing things, so much so that he could take no more and snapped. How we all felt as we watched on helplessly as he slid into breakdown mode and shut himself away from the world that he could no longer trust.
You won’t see written in those reports the gut wrenching worry I have felt these last few months as I have had to watch on helplessly, as my son broke in front of my very eyes and there was nothing I could do to stop it.
You see my son is 13 years old and has already had two failed school placements. His mental health is fragile, he has several diagnoses to contend with and he lives in a world in which he finds confusing and unforgiving. 

He has lost trust in teachers, in people in general I think because of it all, and he has tried to shut himself away from the world…to keep himself safe because he felt so out of control.

He struggled day in day out in a school surrounded by people that didn’t understand him, saw his anxiety as defiance and a problem to be fixed. He tried to tell them he wasn’t coping through his behaviours and actions, but he was ignored. And it broke him. I can never undo the damage that has been done.

But despite all that, he is a young lad who has such potential to achieve anything he wants to. He has an extraordinary connection with animals, he is an avid reader, he whizzes through maths questions, he has a dictionary like memory and he has a wicked sense of humour. He deserves so much more.

He can overcome his challenges and slowly begin the trust the world again because he is the bravest person I know. He wants to learn, he wants to live a full life and he wants to have another go. But without a support system in place around him that truly meets his needs; accepts him for who he is, and recognises this potential he has inside him beneath all that anxiety, then sadly, he will fail to do so.

He is in very real danger of becoming a mere statistic, someone that can easily be forgotten. Too complex to provide care for so it becomes easier to label him as a school refuser and write him off.

But as his mother I can’t let that happen, the right educational setting can be created for him, I know it can.

It’s really not too much to ask!

All he needs is a setting that truly understands anxiety and autism. They need to be experts in the field, he has been let down so often that he deserves this chance. He has as much right as everyone else to succeed doesn't he?

As his mother, I have seen how putting him in the wrong setting not only breaks my boy in two, but it pushes our family to the brink. I am unable to work as I must be here every day for my son. My marriage is strained as the financial pressures take its toll, and we live as a divided family as our two daughters need to live their own lives too and we have to ensure that they don’t miss out on growing up.

And none of this is reflected in the reports you will read today, but this is our reality. We have got it wrong so many times before for my son and I am determined, body and soul, that this will never happen again.

My son deserves a future, my family deserves some support and we, as parents, deserve some recognition for knowing our son well enough to know what is right for him.

We have spent months agonising over schools. Contemplating whether home schooling could be an option, or whether or not he would even manage to access any support ever again. But I can’t give up hope. I need to be his voice while he is unable to speak up for himself and he needs hope that he can have a brighter future.

My son deserves a bespoke package of care that will address his individual needs and in which he will be surrounded by people just like him, offering him a sense of belonging that he has never really felt anywhere other than at home.

He needs good home school communication, and a team of specialists and therapists on site to help him to  learn to manage his anxiety and mental health, and begin to accept his differences and embrace his diagnoses.

He needs a school that recognises his potential and the importance of looking at my sons needs holistically because  his academic needs are just as important as his mental health needs.

He needs a setting that works with parents not against them. Because I am not the enemy!

And most importantly, when we look around a school and get that ‘feeling’… that feeling that every parent has when they look around and just know in their gut that it’s the right place for their child (autism or not.) That feeling that all parents feel instinctively, and which we can’t quantify in any report… well that needs to be acknowledged and listened to.

Our understanding of our son and our expertise as his parents needs to be embraced and seen as just as important as any other recommendation you may read today. No matter whether the school is out of area, costs more than you’re willing to pay, or is independent. If it's right for my son, then that is all that should truly matter.

Because my decision for what is right for my son as his mum isn't based on budget, distance, catchment area or policies. Plainly put; it is based on what my son needs… and to me it really is that simple.

So thank you for taking the time to read my letter today, and I hope that if nothing else, it has given you pause for thought and a brief insight into how it feels from our perspective during this difficult period in my son’s life.

I will never, ever give up hope, because my son deserves to be happy.

He deserves a future!

And just because he is autistic doesn’t give anyone the right to simply write him off as a mere statistic or make him feel that he can’t achieve anything that he wants to.  

I know that if we can work together on this, then anything is possible. And that is what my son deserves right now... a chance to succeed!

Yours Sincerely
Mrs M