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

in the garden, digging, planting, mulching, and mowing, while Jen wheeled herself around on the decking, walked along the balustrade, and bounced and snoozed on the trampoline.

      Jen, Jo and I did the marketing. Jo bought a short black skirt and a piece of pizza for herself. I bought everything for everyone else. (I’m the Mummy) Jenny touched up bananas and total strangers.

      Jen and I had a late lunch at the Pelican Cafe. I love it there – a great setting for a short story. All the customers are characters, cherished and greeted by name, by the loud-voiced Cheryl. She brings me up to date on the medical details of various friends as I eat my herb and mushroom roulade and feed Jen her sausage roll and chips as delicately as I can. Jen and I are characters among characters. Sharing our soup and food. Cuddling and clapping hands. Jen bangs on the table to make the dishes rattle. She lunges at the next table and whips off a plate. She rolls herself across to the counter, pulls down a collection tin labelled ‘Support Joan Briscoe’s Wheelchair’, shakes it and hurls it to the floor with a mighty crash. Don’t you think Joan Briscoe should have a wheelchair, Jen?

      She was in fine fettle in Burke’s too, while I was searching urgently for Christmas presents for Georgie and the family in Africa. She’d lunge at the merchandise and I’d lunge at her.

      By the time I was carrying four purses and wallets, and trying to manoeuvre the chair between laden tables with one hand, and lunging, snatching and restacking as I went, a shop assistant actually offered to assist. ‘Could I put all those purses on the counter for you until you’re ready to pay for them, dear?’

      I rode down to the Commonwealth Reserve at 8.00 am to help set up our Check point for the Community Aid Abroad (CAA) Walk Against Want bike riders, then rode home again. After doing all the usual morning things with Jenny, animals, clothes, food and newspapers, Jen and I strolled back to the Check-point. For the rest of the day I checked (stamped books and said, ‘There’s cool water over there.’) and Jen pushed herself in circles round the park in the big wheeled chair. She was very active, but I kept having to rescue her. She runs into tent walls, rubbish bins, water coolers, people’s legs, or gets stuck on power cords, little sticks or ditches. A couple of times perplexed citizens would start pushing her, looking around anxiously for her owner, when she was way off by herself. She had a lovely time. It was much nicer having the check-point at the Commonwealth Reserve. There was a band playing in the rotunda, lots of activity to watch and dappled sunshine to sit in.

      School provided most of her activities and filled most of her days. Yarraville Special Developmental School (YSDS) was a wonderfully stimulating and caring environment where Jenny could improve her skills and enjoy herself.

      Jen will be delighted to get back to school tomorrow – the holidays are pretty boring and unstimulating for her.

      Jen had a busy day, off to school by 8.00 and lots of special activities for Education Week. I went up to see a sing-along and music therapy demonstration. Jen kept standing up and leaning against me so I sat her on my knee. The teachers rolled around laughing at great big Jenny sitting on my knee having a cuddle. Quite embarrassing.

      Jenny had the day off for Parent-Teacher interviews, so I started her increased morning dose of Tegretol and she slept a lot. Her interview was OK but I feel her teacher rather over-rated her skills in her written report. I don’t think ‘understands most things that are said to her’ and ‘fine motor control is very good’ are really accurate assessments. She understands tone of voice and familiar phrases in a context, with cues, rather than understanding actual words. And I don’t really think fiddling with things till screws come loose and pulling out pubic hair are evidence of good fine motor control. They like to write encouraging optimistic reports. She is making progress though, in understanding and motor skills, at a greater rate than she has for years, and her skin has improved since I cut down on her sugar and fat intake.

      Jen has a sleep-over at school tomorrow. In the hall are a large case, a huge bag and her camp-bed – all for one night away.

      There was a Football day at Jen’s school. I couldn’t find any footy jumpers, but in Ant’s room I found a beaut Bulldogs flag, and the big wind-tunnel kite the Lindsay’s brought us from the USA has long red, white and blue streamers, so I sent her off with those flying from her chair and an order for a hot pie for her lunch.

      Jen’s school report was sent home. It’s amazing the things she does there. You’d think they’d get special parental consent for ‘parachute activities’ though! (That reminds me of a protest I visualised once, back in the days when Tom Roper was Minister for Health and Westraid was fighting with him about something. My vision was to parachute Jenny, in her wheelchair, off the top of 555 Collins Street so she drifted slowly by his plush executive suite windows up near the top there, with protest banners flying from the chair.)

      Eating was one of the skills her teachers worked hard on – with some success, some of the time.

      I took the extra time and trouble to make Jenny put each forkful of food in her mouth herself. That’s what she does at school and Andrew has noticed she spits out less if she puts 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