Forever Baby: Jenny’s Story - A Mother’s Diary

Before work I had to run Jen up to school because she was busy on the toilet when the bus came. I cut her toenails and fingernails too. Total quality care.

Jo was cheerful in spite of a sore foot and an earache. She was lecturing me about the folly of my grumbling when she wants a new $3 toothbrush from time to time. She points out that she has not even cost me anything for ordinary dental treatment, let alone thousands of dollars for orthodontic treatment. She’s right, you know. I’ll buy her a $5 toothbrush with sparkles. Then again, Jen’s teeth are good too, and I’m not forever forking out for toothbrushes for her.

Although Jenny was basically fairly healthy, there was always something cropping up.

A few days ago Jen’s teachers noticed a small bald patch on her head where she twiddles with her hair. I decided to put a bit of cream on it this afternoon in case an itch was causing the twiddling. I don’t know whether the cream loosened the hair or caused an increase in the twiddling, but by tea time the bald patch was nearly twice as big and very noticeable. We tried tying scarves and bandages around her head and putting a mitten on her hand but she had them off in minutes. I hope she’s not totally bald by morning.

I’m trying various things on Jen’s left hand to distract her from twiddling her hair. Anything that sticks out enough for her to get a hold on with her teeth is soon pulled off, but a strip of Micropore seems to adhere well enough that she can flick and rub at it without completely dislodging it. I don’t know if it distracts her from her hair though. We’ll see.

Jenny had a hair cut today. She was surprisingly good and let me hold her head still for quite a while before she started struggling. I got the front part cut fairly short to see if she stops twiddling it and the back was left longer, for warmth and because she’d had enough by then.

Jen went to school and came home rather snotty. Sure enough she wasn’t interested in the delicious just-like-Nanny-used-to-make Irish stew (which wasn’t very delicious, not like Nanny’s at all really – we can but try) and soon after chucked it all up again in bed. Yucky-pucky. It amazes me how calm and cheerful I remain as I clean everything up. ‘Hopelessness’ is the result of the ‘situation’ and your ‘expectations’ about it. That was the gist of last night’s lecture at the Cairnmillar Institute, and one of the few things I said in ‘Group’ was how having a disabled child really forced you to look at the mass of expectations we have for our children, because if you can’t change the situation and you don’t want to be overwhelmed by hopelessness, then you have to adjust the expectations. Pity I didn’t realise that I should adjust my expectations of Anthony at an early stage. Poor Jo, of course, labours on under the full load of unrealistic parental expectations. She must be pretty, polite, clever, diligent, helpful, fit, friendly etc. It’s remarkable how well she’s bearing up.

Really Jen, you are a trial. I spent much of the day doing loads of washing, devotedly guarding them against rain showers, whisking things in and out, and finishing off all Jen’s bedding in the dryer.

‘There you are Jen. Nice clean bed. No more pissy smell’

Jen goes ‘Whoopy, whoopy.’

Joey goes ‘Mum, Mum!’

Mum goes ‘Stampy-screamy, stampy-screamy.’

Nan goes ‘Gulpy, gulpy.’

Dad goes ‘Fiddle-I-fee.’

So now the room smells of chuck instead of piss. A trial indeed!

A new Education Department doctor rang to say Jenny’s teacher (also new) had complained to her about Jenny’s weight. So they ring me up to see what I’m doing about it. I’ll stop sending any lunch and see how they respond to that, or buy some of those fake plastic sandwiches and biscuits and let her chew on those. ‘Well, she has lost some weight and she is walking much more than she used to, and I’ve got her on a diet of bread and water, and we’re hoping the multi-million dollar pool we’re putting in might help. As for her drowsiness, it’s better than it was, but she still has fits most days so I don’t really think we can drop the dose of Tegretol. Thank you for ringing.’

My goodness, Cognac makes you irritable and aggressive, doesn’t it?

Jen’s been banging her left ear a lot lately, and sure enough, the drum is inflamed. So she’s on Ceclor. It might help. She bangs on her chest a bit too. Should I start her on Pepcidine? I don’t think so.

We had lunch on the deck in the sunshine. Jen had one of her strange outbursts. Rusty attacked Thoz. Jo yelled at Rusty and I joined the fray. Jenny lunged and pulled back savagely on the tablecloth. We hastily counter-pulled from the other end. Jen let go and laughed and we laughed. She lunged and hauled again. A big plate crashed and shattered. The jug teetered and slopped. Food scattered. The dogs moved in. Andrew lightly said she was naughty as he prised the cloth from her fist. Jen started wailing, then roaring and bellowing so furiously that Jeff next door came running into his yard, alarmed and panicky. She pulled savagely at hair and anything within reach, subsided into coughs, sobs and chokes, had a drink of water and was OK again. Baffling. They seem to follow a similar pattern each time - but what triggers them?

Her epilepsy was always a worry as it was hard to control without making her too drowsy.

Jen apparently had one fit at school and was very sleepy and a bit twitchy for most of the day. I’d been cutting down her Tegretol dose recently so she was less drowsy, but I’ve put her back on the usual dose now. I don’t want her to lose the gains she’s been making, through having more fits.

Jenny is practically hyperactive. She was awake banging, laughing and bouncing for most of the night and never stopped moving all day – jiggling, slapping the dashboard, rocking, bashing at hanging toys, laughing, coughing and vocalising. What’s going on? I’m a bit sorry she’s going off the Vigabatrin after such a short trial. She may not (or may) be having fewer fits, but she does seem different.

Jen’s having numerous worrying fits.

Toilet Training was something that the school worked hard on, but we never succeeded in getting Jenny out of nappies. Bowels were mainly a matter that was handled at home. Things could get messy at times.

Jen’s a cheeky twerp. She weed on the carpet while I was getting a dry nappy. Very funny, Jenny!

What a messy day! First off Jen piddles on the carpet. Later she smears shit over herself, her clothes, the toilet, the bath, the wall and the floor – twice. We go for a walk and a bird poops on her shoulder and the wheelchair wheels get liberally coated with sticky dog dung. I get home to find Ant has invited his sister and her little Kelvin out for a swim and Kelvin has dripped chocolate icy-pole far and wide. Within minutes Kelvin has slipped and split his head open on the edge of the pool. Blood pours down his back and makes puddles on the floor. Bloody towels, nappies and washers join the shitty ones in buckets in the laundry. I use the old trick of tying knots in Kelvin’s hair to hold the gaping edges together and whack on a big pressure bandage. We try to give him Panadol and honey in milk and he chucks over his mother and the kitchen floor. More cloths in the laundry. And I keep finding more marks on the floor where Andrew has stomped through the house with green paint on his shoes. If you hear me scream you’ll know Jenny has chucked all over her freshly washed bedding—pillow, doona and all. And Joey spilt water on my bed. But apart from all that it was a beautiful day.

Jenny’s periods didn’t bother her too much, but they were difficult to deal with and limited her freedom and activities at times. Various things were tried, but in the end I decided to apply to the Guardianship Board for consent for Jenny to have an endometrial ablation operation which I hoped would stop her bleeding. It was a long process getting all the information the Board required for making its decision.

Jen is still bleeding on and off, with either a trickle or a flood on most days, and it’s been like that for over a month. Endometrial ablation is the latest thing for menorrhagia and we’ve had a couple of cases before the Guardianship Board where the combined benefits of no periods and no fertility without the trauma of hysterectomy have been seen as desirable. I must say it has a certain appeal. There’s not much dignity in menstrual blood smeared all over your face.

Jen is bleeding again. She only bled lightly for three days in October and I thought things were tolerable, but as I contemplate buckets stuffed with smelly, gory nappies I fill in my charts with renewed vigour.

Jen’s teacher sent home a report she had written about the impact of Jenny’s irregular periods on her school activities. It was detailed and helpful, but to read it, if you didn’t know Jen, you would not realise she has an intellectual disability. Even her inability to learn to manage her own periods was attributed to her physical disability and lack of manual dexterity. Strange. Is it taken as given, so obvious as to not need mentioning, or is there a denial of her intellectual disability as a factor in her lack of skills?

Jen’s visit to Philip Graves, paediatrician and member of GAB, was the big item for the day. He took a full history starting right back before she was born. Going over her birth and early years is always an emotional experience. I told him things I don’t think I’ve told anyone before and I start to wonder what is fact and what is fantasy after all this time. Remembering incidents from her past, it makes me sad that we never really appreciated her gains and skills when she had them, and then she lost a lot in periods of bad fitting. When she was crawling we could only see that she should have been running and skipping by then. When she made a few meaningful sounds, that she should have been talking. I don’t even remember her being a proficient crawler, but one of the Hynes boys found her once, half-way along Laverton Street, on the other side of the road, full-speed-ahead for Victoria Street, and carried her home to me. So I guess she did crawl. How old was she? How long did she crawl for? I don’t know. I don’t remember.

Then I went up to Jen’s school for her intelligence test (the correct term these days is Psychometric Assessment, if you don’t mind). The Regional Psychologist and a silent off-sider did the test on me. Jen wasn’t even there. Just a lot of questions. Is she able to help around the house? Can she dry herself after her bath? Is she aware of dangers? There weren’t many ‘Yes’ answers. This Vinelander Adaptive Behaviour Scale can be used to give a scored rate – to American norms. That will do. The psychologist had assessed, on clinical judgement, that there was no point even attempting a WISC or a WAISS with Jenny. She’ll do a report for the school as well as the Board, so that will be useful.

At Jen’s Parent-Teacher interview I was given a copy of the psychologist’s assessment report. Pretty much as I’d expected but still upsetting to see it confirmed in writing. In her best areas she’s functioning at the level of an eleven month old baby, in some other areas at a six, seven and ten month level. I wonder if they’ll really try to send her off to a TAFE college when she turns twenty-one.

By 1990 we had already decided to build a pool. I’d discovered at Altona pool how mobile and independent Jenny could be in shoulder-depth water, and figured that with a daily swim she’d do even better. We came up with the idea of a smallish pool, not too deep, heated, and with a spa and a hoist. It would be in a beautiful room attached to the back of the house, with big windows overlooking it from the kitchen, the family-room and the back decking. There would be a shower next to the hoist, and plenty of space for doing things in while watching Jenny swim. A grand vision, but what a process to make it a reality.

On the news this morning was an item saying that the rumours about the Pyramid Building Society going broke were untrue. I immediately panicked. “For heaven’s sake get our money out. We need that money for the pool.”

I’m getting rather sick of all the hassles with building the pool, waking at night worrying. The whole thing is seeming like a stupid nightmare that will never actually happen. Jeannie says they’ll help us re-lay the bricks we’ve taken up in preparation, and we can send Jen swimming, in a taxi, with a paid escort, every day for years, for the cost of this Taj Mahal.

August, 1991 Jen had her debut in the pool. At long last. It went really well. She was in for about forty-five minutes, moving all the time and refusing laughingly to come out. Nanny and Ann came up to see her and she had a great time interacting with them. I finally grabbed her wrist very firmly and got her back onto the hoist and out she came. The shower was a bit hard to adjust, but apart from that the showering and dressing process worked pretty well. All the neighbours came for a celebratory swim later, and a celebratory bottle of Bailey’s Irish Cream went west.

Athalie drove me home after the school working-bee and came in to see the pool. Jen was still on the trampoline but nearly climbed off when she heard my voice.

Jen was pretty active all day. A domineering demon in church, up and down and back and forth along the balustrade during the afternoon, and all over the place in the swimming pool, refusing to come down to the hoist to get out. I took the big Monsteria from the bathroom out onto the deck, planning to wash its leaves and put it in the pool room, but the little horror pulled half its leaves off.

The wind had blown the pilot light out and the pool was only 26°. When I lowered Jen in she looked alarmed and started whimpering and trying to clamber out, so I raised her straight up again and gave her a nice hot shower instead.

I put Jen in the pool and Jo, Meredith and I had a group sequinning session for an hour or so by the pool. At a rough estimate, there’s another 22 hours of sequinning to do to finish the little costume I’m making. Jo and Meredith spent the time criticising their ballet teacher. Must be nearly time they gave it away.

Jen may have discovered cause and effect, a way to make things happen. She pulls up the flap on the skimmer box and stops the flow of water so the pump sucks in air, then she lets go of the flap so water gushes and gurgles in and she laughs. Then she moves across the pool to the inlet holes in time for the sucked-in air to come bubbling noisily out and she holds her hand in the turbulence and laughs again. Lovely to see, but not good for the pump, I fear.

Jen was doing lots of different things in the pool today – feeling the inlet water, sitting on the step, chasing Happy Apple, pulling flippers in off the edge, hanging on to the edge and stretching out horizontally, putting her ear under the water to listen to the spa jet bubbles. She was having a lovely time but is getting a cold and has a sore eye.

In 1993 my term at the Guardianship and Administration Board ended, and it was a great shock to me when I was not reappointed.

Big April fool. I haven’t felt this miserable since Meredith died. And it’s not that bad. I haven’t lost my daughter; I’ve only lost my job. One of my jobs. The one I like best, and all the people I love there. They’ll all say how sorry they are and what a bad thing it is, but the Guardianship Board will go on and they’ll forget me. And that makes me miserable. At least I had Andrew, Joey and Jenny to comfort me as I sobbed and blubbered.

Poor Mrs Mac rang to say she won’t be able to come anymore because her sight is failing and she’s been told she must retire. I was able to offer some wry consolation, ‘Well, I’ve just got the sack, so I probably couldn’t afford you anymore either.’

I didn’t stay low for long though. There were plenty of other things I could do with my time. Like bird-watching.

Jen and I went tree planting with the Bird Observers Club at the You Yangs. The You Yangs is no place for a wheelchair so I set Jen up in the Tarago with the back seats down and her toys and music and Twisties while we did the tree planting. She joined us for a picnic by the roadside, but the wind was pretty cold and strong. The group of about twenty planted nearly 500 little trees.

And writing. For years I’d had dreams of becoming a writer. Now I had a computer and spare time, so I got stuck into it.

Another piece finished. I’m whipping up quite a folio. My diary’s looking a bit thin though and as for quality time with my beloved family . . . Today’s piece was on having a disabled child, a general ramble with an attempt to make a point at the end. I have things to say but no real reason for saying them. Ah, well, it fills in the hours and keeps me off the streets.