Sick notes and excuses

Had a ‘chuckle’ this morning while reading tweets from mothers about their disabled kids off sick (or not) from school. It reminded me of past experiences. A key task for parents of disabled children is to weigh up your child’s ‘sickness’ status and manage nursery/access because the ‘sick bar’ is lower for disabled kids. LB now has an indefinite sick note (have I mentioned that before?) but he wasn’t any more unwell than most kids when he was a tot.

In those days, he went to the university nursery a couple of days a week while I did my degree. They soon found him a bit of a handful (despite talking the talk in terms of meeting his needs) so staff regularly contacted me to collect him. Fifteen years ago of course, mobile phones were a bit of a rarity so the nursery staff had my lecture/seminar timetable to track me down. It was pretty frustrating to get hauled out of lectures to go and pick him up. Regular heart sink moments.

“He seems a bit under the weather. We think you should take him home for the rest of the day”, they would say, handing over a grumpy little parcel of healthiness.

Halfway through term though it was reading week. Whoo hoo!!! No timetable just uninterrupted study time in the library. Such a treat. One day, after about half an hour of reading, there was a tannoy announcement in the library;

“Would Sarasiobhan please go to the nursery to collect her sick child. Sarasiobhan to the nursery please.”

Unbloodybelievable. Seriously???? You have got to be kidding me??? I sat there, surrounded by books, in my chilly little study carel thing, feeling like I had a massive arrow over my head indicating it was me. Of course, in a university of 16,000 students, no one had a clue who I was but I felt completely exposed. I packed up my stuff and wandered out of the library. Furious and frustrated. I walked about for a bit wondering if I could ignore it. “If only I hadn’t gone straight to the library..” I muttered to myself. I went to get a coffee in a cafe. Standing in the queue, deep in thought about my options, I vaguely noticed an A4 sheet of paper pinned to the noticeboard by the till. In large black font was typed;

“Urgent! Would Sarasiobhan please go to the nursery straight away to collect her sick child.”

Eeek!!!!  Game over. It was clearly serious. I legged it over to the nursery, dropping books and bits of paper, feeling guilty about the wasted ‘fume’ time.

“Ah hello Sarasiobhan.  I’m glad we got hold of you. LB seems a bit under the weather so we thought you ought to take him home for the rest of the day.”

[…]

Thinking about it, I’m not sure that indefinite sick note did start in November 2011.

Being LB’s Mum

Regular readers will know that quite a chunk of this blog focuses on my relationship (and interactions) with LB.  This isn’t to detract from my (or Rich’s) relationship (or interactions) with any of the other kids. It’s just that life with a dude like LB has peculiarities and a difference to it, that are often not really known about, or understood, by people outside of family or close friends.

I’ve been thinking quite a bit recently about being LB’s mum. This is because he is kind of becoming an adult. I say kind of for obvious reasons.  Well I think they are obvious reasons. In my book, he’s going to have to be able to count to ten and cross a road unsupervised before he gets adult status. But maybe I’m wrong.

Being LB’s mum has had a profound impact on my life. This impact has been a mix of good, bad and indifferent. As I’ve mentioned before, LB is a genuinely funny dude. Intentionally or unintentionally, he has been consistently entertaining, he is loyal, loving and delights in certain interests. Being his mum has opened up a world to me that is, by turn, frustrating, enlightening, rewarding and soul destroying. I’ve met a lot of remarkable women who have had to go so much further, in terms of physically and emotionally caring  for their disabled children on a daily basis, than is commonly expected of mothers. These women have a resilience, humour and down to earth engagement with regular, sometimes relentless, sometimes shocking challenges. These challenges take so many forms, it would be impossible to begin to list them, but they are substantial. And life changing. I’ve also met a lot of remarkable people who throw themselves into teaching, or caring for, dudes like LB.

My experiences with LB have motivated me to explore academic areas, and develop a career, that may have passed me by in different circumstances. That is pretty cool. I’ve dived into the disability studies pool, splashed around with other parent academics to help carve out a legitimate space for parents of disabled children in disability studies. And had critical, challenging and stimulating discussions and debates along the way.

The bad has been (largely) caused by crap, poorly organised, non-existent or overly bureaucratic support. It has also related, at times, to his behaviour or actions but we won’t dwell on that now*.

Now he’s heading into a different space. A space that is a little bit uncertain. Some things ain’t changed. One of us has to be here everyday after school. He still needs a babysitter if we go out. He still needs prompting to get dressed and clean his teeth. But chucked into the mix now is shaving (shudder), sex education (“Mustn’t get pregnant Mum”), sick notes from the doctor and more surveillance from the state in the form of Atos nonsense questionnaires** and interviews.

Being LB’s mum is different to being the mum of non-learning disabled children. Instead of having a cracking old cry, waving him off to university or wherever, the boy ain’t going anywhere for the forseeable future. We are in for the long haul. That’s fair enough in a lot of ways. But the worst, truly awful and distressing aspect to being LB’s mum is thinking about the future. I know, from speaking with a lot of other parents, this is the biggy for most parents in this situation.  The ‘I really can’t bear to go there’ issue.

That is why I am so enraged at the proposed erosion of the welfare state by a government who have no understanding of what lives are like on the disabled (or chronically ill) side of the fence.

It’s wrong. And damaging in unmeasurable ways.

 

*But as a taster run with aggression, tantrums that have raised the ceiling in substantial supermarkets, a sleep pattern that would flummox a torture regime and low level, continuous questioning. Of everything truck and bus related.

**For a future comedy post.

(More) tales of the unexpected

Wow. I am reeling. Seriously in shock.

We’ve seen LB onto his school bus (which is now a car) for years and years and years. I’ve lost any inhibitions about being seen in public (and we live on a very public street) in pyjamas, daggy dressing gowns, frightwig hairhead as I’ve waved him off. And he’s never once waved back.

Continue reading

The panic button

I bumped into an old mate, Nicola, in town today on the way to work. She, too, is in that horrible, horrible space between children’s services and sweet fuck all.  After a quick catch up (that was pretty negative because of the sweet f.a. situ), she asked if I’d heard of seizure alert dogs. Her son, 17, has developed epilepsy, she doesn’t want to put him on medication and her son’s consultant ain’t very happy about this.

“Well, funny you ask because….” I started.

“Ha ha ha ha!!!!!! You always know something funny about things, Sarasiobhan!”, she laughed.

“…I read about this woman,” I continued, “she had a seizure alert dog who was brilliant. He sensed when she was about to have a seizure and nudged her, so she could take medication. She had a panic button installed in her flat that he could press with his paw to call the paramedics if she became unconscious…”

“Wow, that is amazing.  I will definitely look into it for Billy”, said Nicola, paying proper attention at last.

“The funny thing was, if he felt she wasn’t paying enough attention to him, or felt like a bit of attention from the paramedics, he would walk over to the button and stand, with his paw raised, ready to press….”

“Hahahahahahahahahahahahahahaha”, Nicola howled, hysterically hanging on to my arm. Her laughter was infectious and we stood, a couple of hysterical women, in a sea of commuters and Summer school students. Bit of a chuckle and tonic.

More details of the story of the young woman with the seizure alert dog, and other young people’s experiences of epilepsy, can be read here.