WHY ADULT DISABILITY SERVICES ARE NEEDED (PART 6)

If I truly loved my daughter I’d want to spend every hour of every day with her, wouldn’t I? Wrong.

If she didn’t have special needs you wouldn’t expect that for longer than a couple of years at most.

It’s the summer holidays right now and I spend at least 8 hours a day directly entertaining and helping my daughter, sometimes that involves multitasking (hello Twitter and Tesco!) but less than when she was little and enjoyed watching and chatting to me while I did everyday household activities like cooking and cleaning.

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The Special Needs Tunnel

Magical but hard is a great way to describe the early years of motherhood. So far so familiar, in a beautiful and encouraging article by Kate Takes Five. But unlike other mums I didn’t come out the other side. Motherhood is a bit like a tunnel you see, and the special needs tunnel is longer and more convoluted than most. Twenty two years after becoming a mum, my days are still book ended by children. I still stay up with one, and get up to another. So it was bittersweet moment when I acknowledged that I may never leave at all, and may always be on the inside looking out.

When you think of a tunnel, what do you see? Is it a dark, scary place that you can’t wait to leave? Or a safe dry comfortable refuge from the world? The special needs tunnel can be both of these.

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Competence

Motherhood is an odd experience: we all go into it without professional training, and all the manuals say different things.  And of course every child is different, so getting it right is often more a matter of luck than anything else.  It’s no wonder that motherhood can be a confusing place.  Add special needs into the mix and things get really complicated.

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How to tackle school refusal

You get a sick feeling when the alarm goes off on Monday morning.  It’s not the first alarm, the one that has you crawling out of bed.  No, this is the reminder to wake your child for school.  The child who doesn’t really want to go.  You climb the stairs, take a deep breath, and enter.  Using a calm and positive voice you tell him the time and ask him to get up.  He simply tugs the duvet over his head.  But you know that this could mean anything.  So you try again in 10 minutes.  Sometimes you get lucky, sometimes the dance continues until the school bus has been and gone, and then you taste that feeling of bitter failure once again.  Mornings like these are guaranteed to make most parents feel helpless, hopeless and useless.

Your child will be feeling miserable too.  True school refusal is nothing to do with your child being naughty or bold, but more to do with fear and anxiety.   They know you want them to go to school and they may want to go themselves, but they just can’t.

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Reasons to be cheerful despite School Refusal

So the return to school did not go quite as planned, and I won’t tell you about my feelings as they are not pretty.  I’ve taken to posting Facebook updates that only I can see.  But, as per my resolutions, I am still maintaining a calm facade.  Ditto the school, as I have been unable to make contact, and no-one appears to have rung me either.  I’ve promised not to write about him on here, so I can’t ask you to help me, and I’m sure that my Facebook friends are sick of this problem too, so I’ll probably just grit and grind my teeth and try to focus on my reasons to be cheerful instead…

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I think we’ve finally cracked Christmas

I think we’ve finally cracked Christmas

Well apart from the decorations.  I don’t seem to have a festive bone in my body.  Give me a bunch of holly, ivy and eucalyptus and you’ll end up with something for burning in the fireplace not putting on the mantel.  Still, I tried.

You see we haven’t spent many Christmases at home — last year it happened accidentally and we just made the best of it, so this year I wanted it to be really special.  And put myself under far too much pressure of course.

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