Another Outing & Feeling Torn...

Out for Sunday dinner with sister & cousins

Third proper outing in the past month or so. At first we ummed and ahed about whether to take Chrissy with us as she woke up on Sunday in such an unsettled mood. Feeling torn is part of being Chrissy's mum. It's hard to know what to do for the best because she is so unpredictable.

The day got off to a difficult start. Chrissy was shouty & repetitive as I was getting her dressed, she then blundered into Alex's room and woke her up. Result one very stroppy Alex, who'd been up until 4am lesson planning for her new teaching job. 'If you take Chrissy I'm not going,' she announced.

'No, we'll drop her back.' I was hedging my bets. I planned to make up my mind once we got nearer the restaurant. Chrissy's ATU was very close by so we could do a detour if necessary.

On the journey there, Chrissy obsessed non-stop about food. We tried all the tricks, getting her to repeat our answers back: 'What did we say Chrissy?' Signing zip it up & 'yes' instead of giving verbal feedback & so on. Nothing worked but optimism prevailed. We owe it to Chrissy to keep taking chances on her and I banish memories of previous disasters. Onwards and upwards!

Our table was perfectly positioned in its own room. It wasn't completely private - people could walk through it to the garden - but it was a handy escape route for us too! I prayed that sausages, Chrissy's favourite, would be on the menu & that somehow we could get her to wait without kicking off. Ian was a star - he drew sausages, wrote s-a-u-s-a-g-e-s & got her to copy it, & asked Chrissy what she would be eating with her sausages. 'Is it tomato sauce?' 'Is it mashed potatoes and gravy?' A diet coke with two straws and no ice was duly served to Chrissy. She eyed it warily because it wasn't in her usual bottle or cup, and we breathed a sigh of relief when she accepted it, topped up with water, just as she always likes it.

During the wait for food, Chrissy grew increasingly curious about what was going on around her. She introduced herself to her reflection in a mirror on the wall above the table, then, clapping, flapping and talking at the top of her voice, she made her way, like a galleon in full sail, towards the main dining area. There was no stopping her so I grabbed her hand and managed to steer her past the bar and other dinners to the loo, then back again to her seat. People politely pretended not to stare and I politely pretended not to notice.

Ian then managed to divert Chrissy outside and I left him to it. Sometimes Chrissy can be overwhelmed by two people talking to her and directing her. After 10 minutes I went to check everything was ok and found Ian patiently pushing her on a very sturdy swing in the garden. The expression on her face was beatific. She was the most relaxed I'd seen her all day. Another item on the 'shopping list' for Chrissy's new home.



After dinner Chrissy nagged obsessively about pudding. After pudding it was 'I want sandwiches' but we got through it all without mishap and, although Chrissy's mood wasn't as good as it can be, she enjoyed her meal out. As Alex says 'it's like she was about to kick off but somehow she never did.'

Then came the part that tugged at my heartstrings. We took her back to the ATU and her face crumpled. 'I want to come home,' she sobbed. Tasha, a carer she really likes sat with her for a while & managed to distract her with a picture book. Then Chrissy called out 'bye!' to us quite happily.

I was told that she had been crying to come home in the week too. This is another effect of Chrissy waking up after medication changes. She knows all too well what she wants and she's telling us loud and clear. I can't put into words how torn & guilty I feel over this & I wouldn't mind betting that many other mums in my situation feel the same. I rationalise it by telling myself that she's an adult and most people her age live independently anyway but she's like a toddler - so terribly vulnerable; Ian reminds me that one day we'll no longer be around, so she needs to get used to living away from home; I remember how hard it was to let go when I first had to accept that we could no longer cope. It gets easier but the ache never goes away. You just have to find a way to live with it.


I am a SWAN UK (Syndromes without a Name) blogger

Eating Issues: A Special Saturday Post

Here, Chrissy is clutching her lunch-box in a carrier bag with its handles tied in a bow. Taking a packed lunch and indulging her food-related rituals enabled us to enjoy a trip to Exbury Gardens yesterday with her two nanas.

Chrissy has always been obsessive about food - from failing to thrive as a baby to over-eating as an adult. As a newborn Chrissy's suck was weak and she vomited frequently. Even as an infant, she suffered prolonged screaming bouts in which she would fling herself backwards as if in the grip of a painful spasm. I suspect she suffered from reflux as this is a characteristic of her chromosome disorder.

At her six week check I was advised to put her on solids as she wasn't gaining sufficient weight. The dramas at mealtimes began in earnest then. Chrissy choked, gagged and vomited her way through the weaning period, especially the stage 2 baby foods with lumps, as I agonised over where I was going wrong. I pureed her food for several years as she seemed unable to chew. The vomiting eventually eased but Chrissy's appetite remained poor. She limited her diet to a few select smooth foods, such as Petit Filous - the little fruit cream cheese pots, and Weatabix, mashed up with lots of milk.

Changes came gradually as Chrissy grew bigger and wanted the same foods as her siblings and peers - but she was still very picky and ate painfully slowly. When she was around 10 and anti-psychotics were introduced, her appetite increased and her diet became more varied. It got to the point where she'd eat anything and never seemed to feel full. Her weight decreased again when she went on Prozac and Naltrexone at 14, and during her six-month stint on a gluten and casein free diet. Her weight dropped to five stone when she was 22 and had the platelet problem. She would only eat cheese flan initially, then ate so little we wondered how she survived. After her hospitalisation, anti-psychotics were re-introduced on a daily basis, and she became increasingly obsessive about food. In fact, before her microdeletion was found she was even tested for Prader-Willi Syndrome, a genetic disorder characterised by over-eating and food obsession.

These days, Chrissy is overweight and her life revolves around food. She repeats the same food-related questions every couple of minutes 'what's for dinner?' 'What am I having?' 'Is it peanut butter?' etc. If we ignore her or don't answer in the right way she gets increasingly agitated and if she has to wait for food her obsessions will escalate into a self-injurious outburst. Due to these outbursts, particularly her stripping behaviours, we're very nervous about taking her out of the house. The trip to Exbury was a ridiculously ambitious plan but I knew that, for different reasons, it was a special place for Chrissy's nanas, and at this time of year it's at its most spectacular. We got there late - about 3.30 - because we couldn't rouse Chrissy from one of her sleepathons - but the long deep sleep had left her full of life, and she was thrilled to be there. The only heart-stopping moments came on the moving steam train when Chrissy announced several times with increasing urgency: 'I want to get off! Thankfully, Ian's iron grip, and our frantic distraction techniques and shameless bribery ('shall we open your picnic? What would you like next - cake or chocolate mousse?') worked a treat. She finished her picnic later in the most idyllic setting imaginable surrounded by a riot of colourful blooms, including the glorious rhododendrons Exbury Gardens are famed for. I'm so glad we decided to risk it. What a magical afternoon!

I am a SWAN UK (Syndromes without a Name) blogger