I sense another battle ahead

I haven’t been a very good blogger lately.  My posts are becoming more infrequent and I’ve
become  quite bad at commenting on other peoples blogs.  I’m sorry for this but the main reason for my lack of engagement is that I’m feeling tired and run down.

I’ve been  fighting for my children for what feels like an eternity.  In truth its only been
twelve years but that’s a long time and its eaten into my life to such a degree that I no longer feel like the person I once was.  Perhaps that is a natural aspect of motherhood; people to look after and a new  set of priorities which is bound to change me and my perspective on life.  Nevertheless the ridiculous fight I have had to endure as a result of having special needs children has left me running on empty.

The number of hurdles we have had to overcome (and still to overcome) is mind-boggling crazy.  We seem to lurch from one thing to another.  Only recently another crisis happened with regards to my son’s school transport and I’ve had to write a letter of complaint to the local authority about the distress caused to our family.  For those of you who don’t know what happened, my car broke down and I had no means of collecting my son from school.  The school is in the sticks, at least a 30 minute drive away so I can’t even slip on my trainers and do a hearty walk to pick him up.  I am reliant on wheels to get him there and back and of course when one set of wheels fails you have to look for another.  As a result I asked his school if he could come back on the transport that my council provides for local children who attend the school.  They said yes, the taxi company said yes and I felt relieved that everything would be OK.  However, when the time came the taxi driver adamantly refused to take my son home as he was “not on the list”.  They left him standing there while they tootled out of the school grounds.  Fortunately the school looked after him and organised alternative transport but it took another two hours before he returned home.  By then he was tired and stressed and angry that he had been dumped by our council.  I was too.

As I’ve said I’ve written a letter in the hope that the authority can examine what happened but frankly I’m sceptical anything will be done.  In my heart of hearts I know that my words will have little impact with the bureaucrats.  They will look down on me as ‘just a mother’ and they will defend their sloppiness as they usually do, more interested in their jobs and budgets than the families they are supposed to support.  They don’t really care about us.  They may pretend that they do when they implement the latest gimmick, the soft stuff as I call it, but at the coal face of special needs parenting it doesn’t equate into anything tangible.  Our lives are still challenging and exhausting.  We still have to fight for a diagnosis, for a statement, for a school place, for health care even and as for respite – does that exist?

And so it is that I’ve had enough of this SEN and disability stuff.  I don’t want to fight
anymore.  I want to live an ordinary life, well as ordinary as it can be with two special needs kids, but the reality is that there are more challenges ahead.  My son is on the brink of another major transition in his life – post 16, words that are soon going to dominate my thoughts as we decide what the hell to do.  You see we have only just managed to help him return to school after a gruelling period of rehabilitation that has left me feeling worn out.  And now, no sooner has he got back to the classroom that we have to think where he should go in eighteen months time.  It worries me because we are not ready for this; my son is not ready for this.  We need a period of stability and calm and a chance for my son to continue to rebuild his fragile confidence.

Unfortunately we are stuck in a system that is regimented and inflexible, a system that tells us our son should move into post-16 provision because that’s what you do when you’re 16.  The inclusion guy whom I chatted to in another meeting about my daughter’s education (another looming crisis) said they like to bring them back to town, meaning the kids that are schooled out of borough are educated in borough once they reach 16.  My first response on hearing this was where?  There is nowhere for people like my son to go, unless he thinks that my son is up to managing the massive college complex that resides at the edge of town.  Perhaps somewhere within this modern, light filled and angled structure is a quiet place that can accommodate my son.  I doubt it.   My instinct tells me my son is not (and may never be) ready for this.  My instinct tells me that the council’s priorities will be to minimise cost.  I sense another battle ahead.

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6 Responses to I sense another battle ahead

  1. Zoe Thompson says:

    You might want to think about getting an Education, Health and Care plan in place instead of a statement as these have the potential to provide a more flexible form of education, eg a bespoke package with 1-1 tailored support where your lad can access educational learning activities that are more hands on and suit his own interests better. It would be possible to have an organisation like IPSEA or Educational Equality support you through this process. That’s what I’d do if we hadn’t set up our own school.

  2. Karen says:

    I’m not surprised you’re exhausted. And your blog turns up when it can, which is fine – I never expect anything from parents of children on the spectrum as I think we all know just how tiring every day life can be. Don’t ever feel pressured please.

    My son will be 16 this year too and so far he will be staying in his special school, for at least one more year and possibly two. I don’t think there is any way he would cope with a college situation yet – maybe never – and I don’t understand how authorities would think any young person with autism could. Some of course manage brilliantly but I expect that to be at smaller colleges with a really switched on SEN base.

    Wishing you success with firstly your complaint about the transport situation – that was disgusting – and secondly with finding the answers to what’s next.

  3. Just wanted to send you lots of supportive hugs. You’re right: it is ridiculous, and unfair, and badly run. Thank goodness your children have you though.

  4. First of all, you don’t have to be a ‘good’ blogger, whatever that is. I read, comment and share my favourite blogs regardless of whether they ever visit mine – i’m sure some of them don’t like it at all!

    I know all about the fight for special needs, and the thing is, you really do fight, more than many of us. You may feel exhausted but that is because you do so much more than many of us. And in what you’re doing, you are probably helping future families facing similar issues.

    My daughter with cerebral palsy is also facing a transition in 18 months time when she is due to leave her wonderful school and enter adult services, or go on the waiting list for them. I can’t actually get my head around it, because everything that I have heard is not good. I just wish that she could stay small forever. But, like you, this is one battle that I HAVE to take on It’s good to know I’m not alone xx

  5. Greenfieldgreen says:

    In lancashire carers contact run a scheme called peace of mind for carers. So in situations such as you described the person you care for would be collected and cared for in your absence due to unforeseen circumstances beyond your control. I dont knoe if theiy have yhis type of scheme in your area, but its worth having if they do?

  6. Fiona says:

    When you say you’ve written a letter do you mean you are using the council’s formal complaints procedure and if so what stage is it at present because you can keep escalating it to the Local Government Ombudsman if you are not satisified

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