Forever Baby: Jenny’s Story - A Mother’s Diary. Mary Burbidge

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СКАЧАТЬ it in herself, so I really should make more effort to be consistent with promoting her independence.

      There are scraps of spaghetti all over the floor from Jenny’s tea and Rusty’s not here to clean it up. I suppose I’ll have to do it myself.

      Jenny is eating nicely lately. Taking food nicely off the fork and then giving the fork back to me. A considerable improvement on taking the fork, putting it in the tray, taking the food off it with her hand, mushing it round for a while, putting it in her mouth, taking it out for further mushing, putting it back then throwing the fork on the floor. They must be making a real effort at school and I reap the benefits.

      Jenny ate her tea nicely but refused the beans and the banana smoothy. She laughed when I called her a naughty bad girl. Rusty ate the banana smoothy. I ate the beans.

      Communicating was another area the school concentrated on. Although she never learned to talk, there are other ways of being understood.

      Jenny had a Switch Assessment at the Independent Living Centre. Quite helpful. It’s surprising just how communicative and assertive Jenny is in various ways now, when you specifically examine her behaviour and look for examples. Lisa, her teacher, is very keen to get her using switches for making choices at school.

      Julie had further tales of Jen’s cheeky willfulness-turning around and laughing when she didn’t want Julie to get her out of the bath and smacking Julie’s hand when Julie smacked hers to stop her twiddling hair. Perhaps I underestimate Jenny in not interpreting these things quite so strongly as premeditated communications on Jen’s part, as Julie does. The school tends to interpret quite a bit of her behaviour as deliberate and ‘naughty’. Perhaps they’re right. If so, should it be capitalised on? And how? I’d hate to have to implement stringent, repressive or punitive regimes to try to make marginal gains in communication. I like her to be a free spirit, reacting as the mood takes her, but that may be detrimental to her overall long-term development and satisfaction.

      Rave on Mary, you lazy, neglectful mother you!

      Physiotherapy and exercises were part or the school program. It was always a battle to keep Jenny mobile, especially as she got bigger, and bigger.

      I did some flute practice and tidying up and some stretching exercises with Jen.

      I put Jenny on the big foam wedge for half an hour or so this afternoon. I put her with her head at the high end. I felt it worked just as well as far as strengthening her back and stretching her hip flexors goes, and it was more comfortable and she was able to use her arms better. She really likes the switch toy I got from Noah’s Ark last week.

      Jenny’s lying contraption was sent home for the weekend, so she had a stretch out on that for a while. She’s showing more volition and initiative in things she does lately. If I put her at the piano and turn the bath on she moves right along to the bathroom end and tries to back in through the door, instead of moving to the other end and sitting in the chair as she usually does. I love to see her showing signs of learning and planning.

      Jenny had a lazy day with the usual activities. Poor Jen, she mostly has lazy, boring days. She did one amazing thing though. After she’d had lunch I left her sitting on the two-seater chair and went outside for a while. When I came back she was sitting on a kitchen chair, half-way down the kitchen, happily throwing everything off the bench onto the floor. She must have moved along pushing the kitchen chair somehow. Tricky!

      Jen came with me for the day. Walking (me, not her) to work and shopping and home, driving to the airport and home. I walked her up the stairs at work, an exhausting and somewhat alarming process. Then she slept all morning as if she’d done all the hard yakka. Might as well have stayed in bed. Walking her up stairs is heavy and difficult, but walking her down is much worse as she won’t bend her knee to lower herself. So I bounced her down on her well-padded fat bottom. Easier, and no risk of a tumble.

      Getting ready for the bus in the mornings and being there to meet it in the afternoons was one of the banes of my life. Punctuality is not one of my best features. I did try, and they were forgiving.

      The morning routine went with the precision of a well-choreographed ballet, with each participant gliding from bedroom to bathroom to bedroom to kitchen to bathroom to front door, pirouetting nimbly to avoid the other participants, all in the correct sequence, all perfectly timed, except the bloody bus arrived three minutes early and started tooting rudely, ruining the whole effect. Probably to punish me for keeping them waiting yesterday afternoon. I apologised.

      It always gave me a thrill to see Jenny showing initiative or asserting her independence in some small thing, although we jokingly chided her as ‘naughty’.

      I sat Jen on the big toilet a couple of times today and she promptly did wee and then stood up, leaning on the bath. Apparently there’s a bar at school, so she can stand up by herself when she’s finished (or before, if she’s feeling mischievous) and she’s decided to do the same thing at home. It’s nice to see her showing some autonomy.

      Katrina was minding Jen today and had her out and about most of the day—to the library and visiting people. Apparently she, Andrew and Jo combined had the devil of a job getting her out of the bath. Jen wasn’t co-operating because she hadn’t been in long enough for her liking. Naughty girl. She was naughty when eating her tea too, insisting on doing it her way instead of the nice way she does it at school. She knows where she can get away with what.

      Jen was in a happy mood when I got home, reaching out for a cuddle, giggling and gurgling, then she practically frog-marched Julie into the bathroom. I wonder if she’d heard and recognised the sound of the bath running.

      Jen almost ran the length of the piano when I held up a peanut butter sandwich. Never have I seen such purposive movement, with a hungry gleam in her eye.

      Jenny pulled all the photos off the photo board again, and ripped up Joey. She giggled uproariously when I sang ‘One, two, Buckle my Shoe’ at bed time.

      Jenny and I had a long swim. She’s beginning to interact with me more when I’m in the pool. She’s also getting quite skilled in moving her wheelchair round. Not in getting to a particular chosen destination, but in getting going and keeping going in spite of running into things. Because she only pushes the wheel with her left hand she goes in wobbly circles, but now she pushes off from walls and obstacles with her foot, to change direction.

      The other side of school was my involvement on School Council.

      Home to bath Jen, fold the washing, cook tea and talk to Jo. Andrew and Ant weren’t home yet when we girls had tea. Then, quick, quick, Jen into bed, I’m late for the YSDS school council meeting again. It was an hilarious meeting. We spent ages rocking with laughter and wiping the tears from our eyes. Two new people—Athalie, the new Vice-Principal, and the father of a new student—must have wondered what on earth they’d struck, although they both contributed to wise-cracks and teasing. It was Brenda who caused so much laughter. She’s the chairperson, but also the chief offender for getting side-tracked into involved personal anecdotes, so it’s very hard to get the meeting moving again. Tonight it was mainly about her dog dying and all the drama that followed. There were doggie and pet cemetery references on and off all evening. ‘Perhaps we could hire a big bus and take all the parents down to the pet cemetery as a fund raising effort.’

      School holidays, and unexpected days off, were often a problem. Usually I made arrangements for someone to mind Jenny while I was at work, but sometimes I took her along with me. She was so patient and undemanding that this was almost easy.

      Andrew was sick in bed again, so he looked after Jenny–also still in СКАЧАТЬ