untangling this thing we call life…

Monthly Archives: December 2013

Funny old thing, this blogging.  (That sentiment does crop up endlessly here, I apologise if it annoys some.)  I’m struck today by the jumpy aspect of blogging.  Life rushes forth, as ever, and it’s true to say that I don’t prioritise blogging above the everyday.  I need, I think, to keep the real and concrete aspects of my life rather higher on my to-do list than this pleasant, warm and fuzzy land.  More’s the pity!

Anyhow, the jumpiness of my blogging became apparent to me this evening when I saw that a lovely follower (go visit her blog over at FEC-this) “liked” a post I wrote a short while ago.  Although it’s not long ago, a lot has happened in my real world, and I’d forgotten about it.  And reading it back, I can’t help feeling I had left the story half untold.

I was writing about my anxiety and anticipation about helping those darling children back to school.  Let me just say that life has really been rather lovely since, if hectic, and as we prepare for the beginning of the next holiday I’m feeling about as calm as I can hope to be.  Back then, my nerves were rather on edge!  I was hopeful that all would be fine on that fateful Tuesday morning.  That I’d be able to help Eldest into the car, zip him back to school and get back just in time for Sweet Girl  and Little Man to come home and then pop out once again in the evening to meet Sweet Girl’s teachers and learn about her progress.

Oh me. Oh my.  NEVER underestimate the power of anxiety teamed with the neurological set up of the autistic mind.  My wonderful little boy, who’s actually a young man in every way just suddenly utterly lost the plot about fifteen minutes before departure time.  All the procedures had been followed – calm preparation, many gentle reminders, and I had given him a departure time one hour earlier than I needed to go.

Fortunately Darling Man had stayed.  Our departure time had been 10am.  We finally left at 3pm.

Darling Man had to take the day off, in part to ensure I was safe, in part to be at home when the Littles returned home.

I have yet to meet Sweet Girl’s teachers.

Eldest made it back to school on the appropriate day, if many hours later than I had planned.

More importantly, when he called home later that night, he was able to articulate his feelings: that actually, regardless of anything else going on, he felt strongly that back to school days should be all about Him.  Not about the Littles, who get to see Mummy every day.  That it was OK to be busy on every other day, but that back to school days needed to be focussed on his needs.  Utterly, completely justifiable.  And his ability to express that so calmly, so kindly, with such an understanding that it sometimes is very difficult to achieve means that we are already planning how to make just that happen in January.

We hope to make a day trip of the event.  For Darling Man to take an official day off (rather than a rescue me day), for me to find alternative care for the Littles, and for us to take Eldest down, take him out to lunch, and re-settle him as much as possible.

Watch this space.  It may work like a dream.  It may simply postpone that moment of transition and trauma, and displace it.

No matter.  He found the words to tell us how difficult this had been for him, that he had not meant any of the aggression that his body displayed, and that he was simply scared.

So there we go… without going into the gory details of an autistic meltdown and the devastation that ensues, especially for the young man in question, that is the end of the Back to School story.

Given that love is unconditional when these kids are concerned, I cannot help but come back to this startling and endearing thought:  my overriding emotion where this boy is concerned is pride.  Overflowing, overwhelming, immense pride in all that he is achieving.  I hope one day he believes me when I tell him:

Eldest… I am PROUD of you!!


In a democratic society, we choose who we want to be. And the way we treat our most vulnerable members speaks volumes about the rest of us.
Here in the UK, there is a lot of good being done to support those vulnerable people. But in tighter economic times, the temptation on government to cut expenses which benefit a minority is huge. After all, they spend so much of their time working on being liked by the majority. They seem to forget that part about being civil servants.
Civil… funny word, but in this instance I’d like to think of those in government being “civil”… polite, civilised, caring, above the petty selfishness we all feel most of the time.
And servants… at its most basic this is a beautiful occupation, to serve. To help others, to enable others to lead a life of dignity and purpose.

I’m the mother of three children, all of whom are vulnerable. None of them fit comfortably in the “norm”. And I love them, and truly believe that they have a valuable contribution to make towards society. Mostly though, I believe that they have as much right to “life” as any of your children. And if they need help to walk, talk, eat, get to work, manage daily tasks, it does not follow that they should be left to wither on the sidelines of life.

If your child has the potential to lead that “normal” life, I could not be happier for you. Would you encourage him or her to help mine in some small way to do the same? Or would you teach them to ignore them and focus on personal gain?

Our government (well, to be fair, governments because I do not believe that this is symptomatic of any particular political party) is drifting comfortably into the second choice. Our government does not feel comfortable asking you and your children to help me and mine.

I choose to think that in the same way as I encourage my children to help those in more need than themselves; in the same way as I try to help in my small circle, so most of you would do the same.

I choose to think that you care as much as I do.

I choose to think that if you feel stolen from by our welfare system, it is most likely because you do not know the good that it does, the lives that it enables.

Please watch this video – it is an eye opener.

Then tell our government that you do care:

The WoW Petition  

If you watched the video, you now know how crucial the ILF is to those who need it.

You also know that thanks to five brave people, it has been saved for the time being.

But you know that it is closed to new applicants.  That means you, should you become disabled.

The War on Welfare petition has now reached 100,000 signatures, but that doesn’t guarantee change.

You can make a difference by signing it, but also by writing to your MP, asking for a debate on the subject.  The following letter is a template you could use.  You can find your MP’s contact details here.  This template is based on the one from the WoW site.

Dear …..
I am writing as a constituent to ask you to represent my views in Parliament.
I signed and supported a government e-petition, the WOW petition, which recently passed the 100,000 signature mark, meaning that it can be considered for a debate in Parliament. I would like you in the interests of democracy to do whatever you can to make this debate happen in the Main Chamber, and allow the voices of sick and disabled people and carers to be heard.
The petition calls for a cumulative impact assessment of welfare reform as it affects sick and disabled people and carers, and an end to the Work Capability Assessment, as demanded by the British Medical Association.
I’ll be adding a paragraph here about my personal experience… what makes you care about this??
I believe that the least Parliament can do is to debate these issues in the Main Chamber, and would be very grateful if you, as my MP would ensure that this debate takes place. Please notify John McDonnell MP’s office of your support as soon as possible so he may inform the Backbench Business Committee that the debate has wide cross party support.
With best wishes for Christmas and the New Year,


-Thank you to my friend Renata for bringing Mary’s story to my attention! http://www.justbringthechocolate.com/advocacy/stand-and-fight-wow-petition/#sthash.DlpQr9Se.dpuf

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