Thursday, 21 March 2013

The Day I Met The Minister


As many of you already know, I initially started this blog as a place to vent and to share my experiences while trying to obtain a diagnosis for Boo.

That was almost 2 years ago now, and my little blog has grown over that time and has become a place where I share all of our life experiences, from my busy life as a stay at home mum to problems we encounter while trying to ensure that Boo has all of the help and support he needs.

As many parents with a child with Special Education Needs know, it can often be a torturous and lonely experience where, under previous legislation, we have been made to feel punished for having a child with additional needs.
We have been subjected to a system where we are constantly fighting a battle for the rights that our children should not have to fight for.
A fight to ensure that they are treated fairly.
A fight to ensure that they have security as they grow older, and that they will not be pushed to one side and forgotten.

It is a system where help is not volunteered to you ..... you have to search it out.

There is no one there to tell you what you need to do next or what the best course of action for you to take is.  It is an emotional enough experience finding out that you have a child with additional needs, without having to fight for help every step of the way.

Many parents find it almost impossible to get the statement of education that they so desperately need, and deserve, to ensure that their child will be treated fairly and fully supported during their education.
This process can be even harder when the child has a hidden disability like Boo.

It should not be like this.

It is a system that doesn't work.

Why should our children be treated differently and made to feel insecure and unhappy because of their additional needs?
Why isn't there more help and guidance along the way?

Well ...... hopefully this is about to change.


On  Monday, alongside 11 other bloggers who have children with Special Education Needs (SEN), I had the pleasure of travelling to London to meet with Edward Timpson, Minister for children and families.
I had been invited to attend by Tots 100, and it was a chance for us to sit down with him and discuss the current SEN system and what can be done to improve it.

Edward Timpson, Minister for children and families, with bloggers from Tots100.

Mr Timpson seemed very keen to hear our views and allowed us to do most of the talking while he took notes and asked questions.  We took it in turns to introduce ourselves, with a brief explanation of why we were there and what was most important to us at that time.

For me, as we are still at the beginning of the statementing process, I am concerned about the lack of communication.  There is no one there to help you and point you in the right direction, unless you know exactly where to look for that help, and communication between schools and the relevant professionals is very poor and at times, non existent.

As we progressed around the table and listened to each other it became very clear that we all have similar concerns and have all faced the same types of difficulties while trying to support our children.

What made the conversation even more interesting is that we are all at different stages of our 'journey' which meant that we got to share a wide range of experiences.  This enabled me to learn a lot as well as sharing my own concerns.

Many important and useful points were brought up during the meeting, and many relevant and good ideas were put across to the Minister highlighting just how much the system can be improved, as long as people are willing to accept a culture change.

We spoke about how important it is to have early intervention and early years support, which at the moment is something that many people don't get.
It seems that many schools are too quick to label a child as 'naughty' or 'lazy' without really stopping to think if there may be an alternative reason for the child's behaviour/difficulties.
This makes it even more important for the schools Special Education Needs coordinator (SENCO) to be independent rather than a full time faculty member at the school.  Currently many SENCO's are either head teachers or deputy heads, and this makes it very difficult to get in touch with them when you need to.
Having an independent SENCO would mean that they are always available to help and provide support.

Nurture Groups was another brilliant idea that was discussed.
Nurture groups would be within schools and would provide care and support to children that are struggling, and would be used as a way to identify whether the child actually has 'special needs' or whether they just need to be nurtured and provided with a little extra care that, for whatever reason, may not be available to them elsewhere.

It has also been identified that having a key worker for your child is extremely important and can play a vital part in ensuring you receive the help and support that you and your child need.
The key worker would be there to liaise between professionals and would co-ordinate the services that are provided to you, enabling them to be delivered as a unit rather than individual services.
Many parents are having to co-ordinate everything on behalf of their child, and although it goes without saying that we all want the very best for our children and would do anything to get it, it can be a very stressful experience when you are trying to split yourself in several different directions while still trying to nurture your child and provide them with everything they need at home as well.

I left the meeting with Mr Timpson feeling positive about the situation.
It was very reassuring to hear other parents talking about their experiences and to finally feel as though I am not alone.  There were many things mentioned in the meeting that had me nodding my head in agreement, and I was relieved to hear others talking about similar difficulties that I have experienced along the way.
Being a parent to a child with additional needs can be a very stressful and lonely experience, and it was so good to finally realise that we are not alone.
Although our children may all have very different needs the journey that we undertake to ensure that they have security in their lives is a very similar one.

Signs are positive for the future of the Special Education Needs system and I really hope that Mr Timpson is as genuine as he seemed, and stays true to his word about wanting to overhaul and improve the system that is currently failing so many families.

Missy x

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