I’m quite new to this whole thing, so please forgive me if I make mistakes. Or in any case just shut up and move on. I’m Leonie. My name is derived from “lioness” and in Dutch, i also use “Leeuwin” (Dutch for lioness) as my name. I’m 32-years-old. I’ve not been around for a long while. In fact, I think I emerged last year for the first time when we had to get a second opinon on our autism diagnosis. That was a success! I’m a split off from Clarissa, who is our inner self helper. I’m more of a protector.
I emerged again yesterday only to find an E-mail exchange in my inbox between our local authority social consultant, CPN, home support staff and day activities staff. They were planning a “large meeting” about our care.
Background: we’ve been living independently with our husband since last May. We do day activities at a day center for intellectually disabled people, even though we’re of at least average intelligence. At first, we went to an industrial group, where we were very much overstimulated. Because of this, we were moved to the sensory group, which is a group for those with severe intellectual and multiple disabilities. We did well there for about five moths, until at the beginning of January, there were a lot of changes at the group. There are three new clients who all need intensive support, so consequently we get left out, being the “high-functioning” type. Some of us can’t handle this and were very irritable. We had a few major meltdowns and a couple more minor outbursts. Call us an attention-seeker all you want, but sitting in a room doing nothing all day with fellow clients who can’t talk and staff who run around, isn’t my idea of day activities. This led the manager to reduce our day activities hours. Initially, this would be for just two weeks, but I have an inkling they’re planning to kick us out altogether and this “large meeting” serves that purpose.
I had had a session with my CPN yesterday afternoon too. I had informed her I want to get the Center for Consulttion and Expertise (CCE) involved on our case. This is an agency that provides consultations on complex care cases where the person’s quality of life is in danger. “Is it truly that bad?” you might wonder. Well, not yet, since we still enjoy some of the time at day acitivities and aren’t melting down every single day. Now, however, we still do some activities inbetween the coffee, lunch and bathroom times. However, rumors have gone round about no more activities at this group, since the staff are too busy with personal care activities. That would affect the whole group, not just me, but that’s not my department. Call me whiney all you want again.
And yes, we are a complex case. We’re of at least average intelligence, yet are blind, autistic, have mild motor impairments and the weirdest set of sensory issues. We are lucky in this sense that we were allowed into the sensory group at all, despite not having an intellectual disability, let alone a severe one. Don’t get me wrong, we used to enjoy it there, but now, we’re either bored like crazy or overloaded most of the time.
In an ideal world, we’d do a mixture of crafts like soap making or jewelry-making, sensory activities like snoezelen, and movement activities like walking or yoga. We can go to the snoezelen room independently, but we can’t go for walks on our own and need a lot of help with crafts too.
Because of needing a lot of help with creative activities, we can’t function in a crafts group for mentally ill people, either. We tried at the institution, but the staff of course couldn’t help us all the time, so we went only when it was quiet enough in the activities room. Back then though, we had the nurses at our unit to fall back on when not doing well while at the unit. Now, living independently, we don’t have anyone to fall back on when not at day activities. The on-call CPN we called two weeks ago, said we’re spoiled if we can’t cope with being alone for a full afternoon. Well, screw her, I don’t care.
Back to the E-mail exchange. I fell right in when our CPN confirmed the “large meeting” for Februrary 8 at 4PM. We hadn’t been CC’d in the earlier messages, so weren’t sure whethr we were invited to the meeting. I wrote a reply asking whether I’m not supposed to come and that I’d really like to come to the meeting too. My husband said they may want to have the meeting without us. “Nothing about us, without us,” I replied. I was a bit paranoid at this time. Like, the reduction of our hours was decided upon without us and, because four people were involved in the phone conversation about it, I didn’t know who ultimatley made the decision. If my whole care team are assembling and making decisions about me, I may need to mistrust everyone.
Luckily, we were informed this morning that we’re certainly welcome to attend the meeting.