Stop loving and missing and thinking about our legendary dude who taught us so many lessons in how to be.

6.7.13

[In no particular order..]

1. Rant about being invoiced by the local authority for ‘fairer charging’ contributions towards care we never received.
2. Despair about nonsensical, ‘service serving’ discussions about choice, autonomy and learning disabled people.
3. Attend pointless meetings with numerous professional shapes and types.
4. Endlessly* worry about the lack of anything resembling appropriate or effective support for learning disabled people to lead productive and meaningful lives.
5. Manage direct payment returns.
6. Pretend to engage with the concept of social stories.
7. Have my mothering smarts surveilled and judged by people who know fuck all about me.

*I’ll still worry about this but not every moment.

Going through the posts I wrote and never posted. I’m going to start to post these (well the ones that won’t end up with defamation charges cough cough) to create a more comprehensive record. Some aren’t finished. I’ll include the original date of writing.

31.1.13

Short, not sweet, but want to capture the transition experience in real time.

Huge upheaval, upset and in some ways calamitous moments over the past six weeks or so. LB is back to school for four days a week. The lid is kind of on now, in a piecemeal, minute by minute way. Social services have chucked a load of money at him to cover emergency care (would be good to know where the emergency care is outside of family, and institutionalised spaces, but that’s personalisation for you).

I’m struck by the level of complexity/involvement in every interaction around LB at the moment. What I’m calling the ‘dit.dit.dit’ moments. (A very fast, sharp dit.dit.dit). That’s how I’m experiencing them. A kind of frenetic pinging, round and round my brain;

Let transport know he’s back at school on Monday. Dit.dit.dit. Rearrange work plans (in tandem with Rich) to cover after school because after school clubs/activities are not doable at the moment. Dit.dit.dit. Keep the mobile phone on loud even during meetings. Just in case. Dit.dit.dit. Organise a car parking permit for the first time since starting work. Dit.dit.dit. Make decisions about how much of private? home life needs to be disclosed at work to enable working life. Dit.dit.dit. What about Wednesday when there’s no school? Dit.dit.dit. What about Tom and the other kids? Dit.dit.dit. Dit.dit.dit. Etc, etc, etc.  Etc.

Yikes. Do these moments relate to the numerous articles reporting on the suffering, coping and burden experienced by parents of disabled children that I tossed aside furiously in my earlier research?

Nah.

They are related to (and these are all interrelated):

• A reactive rather than proactive, integrated health and social care system
• Entrenched views of learning disabled people as worthless (or worse) and the accompanying paucity of funding
• A lack of vision, or aspiration, for the lives of kids like LB