Saturday, 30 April 2011

The Royal Wedding through the eyes of someone with autism

"Is she going to bed?" Chrissy said when I asked what she thought of Kate Middleton's wedding dress! Chrissy watched the royal wedding highlights with me in the evening & stayed reasonably engaged, cuddling up to me on the settee, throughout. She seems drawn to churches & thinks all priests & religious men in robes are called 'John' because Father John was one of her favourite people at St Elizabeth's, Much Hadham, Herts., a fantastic termly boarding school run by nuns that she attended from age 14-19. She enjoyed going to church at St Elizabeth's when she was calm enough to attend.

I found myself in floods of tears watching Kate Middleton's proud dad walk her up the aisle - it hit me anew that Chrissy would never get the opportunity to marry or fall in love. I have another daughter who has those choices in life but my grief wasn't about me, it was about Chrissy & the opportunities denied to her.

At home here yesterday, Chrissy kept remarking on the sound of bells that rang out from our local church. It was hard to tell whether she enjoyed the sound or found them irritating. Chrissy can't express how she feels. She has a wide vocabulary but much of it is learnt, although she can appear to use relevant phrases, such as 'it's sunny outside.' Trouble is, she sometimes says that when it's raining & overcast. If you check her & ask: 'Is it sunny or raining,' she usually gives the right answer - she just trots out repetitive words & phrases without thinking.

We have solved the bedtime problem touch wood :~) The hospital told me that Chrissy has two pillows there. I tried two at home & she was fine. It's interesting that she didn't realise she needed two pillows to feel comfortable, as she will often ask for two of everything else. Such a simple & easily avoidable misunderstanding that had been causing so much aggro! It is very easy to over-estimate Chrissy's abilities to express her needs because she appears to have better communication skills than she actually has. If we had given Chrissy the choice of one or two pillows, she would have chosen two. We just need to become better detectives I guess.

Friday, 22 April 2011

Rare chromosome disorders, learning disability & social class

I got chatting to a very well-heeled lady about having a child in the family with a rare chromosome disorder. She took great pains to impress upon me that no one in her family were carriers & that if the baby was going to be intellectually disabled effects would only be mild because the baby would 'have the best.'

Chrissy's chromosome disorder was de novo (spontaneous) - neither I nor her dad carried the micro-deletion. It was just a one-off, an accident that could have happened to each & every one of us. Does this make us somehow 'better stock' than other families where one parent does carry the micro-deletion? NO! Yet I got the uneasy impression that in this lady's eyes the carrier issue is a big deal for all the wrong reasons. I also wondered how stigmatised & embarrassed the family would feel if the baby were to grow up with significant learning disabilities. As if you can control the severity of intellectual disability by throwing money at the best physios, occupational therapists, psychologists etc.

People need to wake up to the facts: rare chromosome disorders & learning disabilities cut across all social classes.

Are you Mummy....?

....the question Chrissy asked me today while I was running her bath. She answered it herself - 'Possibly.' A learnt, meaningless word but funny & fairly appropriate nonetheless. Chrissy often does this - asks a question then answers it, & sometimes goes on to conduct a hilarious surreal conversation with herself using snatches of words & phrases overheard in others' conversations.

On the drive back to hospital Chrissy spent about 5 minutes shouting in my ear: "Are we going for a drive?!" Mozart's 2 Pianos didn't work but 'Forget You' by Cee Lo Green did (this time!). She suddenly stopped shouting & started dancing in her seat, her face wreathed in smiles. She can make you despair/furious/sad/exhausted one minute then switch moods in a flash & make you smile/laugh/feel full of love & gratitude that you have been blessed with such a child. Loving someone like Chrissy is an emotional roller-coaster as her mood swings are so all-consuming & unpredictable that you can't help mirroring them.

When I dropped her off, without a backward glance, she headed straight for the kitchen & food. So different to when I picked her up. Then, her face had flushed at the sight of me & she'd hugged 2 members of staff, laughing uproariously with joy....

Tuesday, 12 April 2011

Sparkly cupcakes & feral rages

The birthday celebration didn't go to plan - it was like a repeat of Xmas although we tried not to overwhelm Chrissy with new experiences. She kicked off at dinner time as usual as I served her favourite meal, burgers but this was more extreme. Not sure why - over-excited? As she pulled her hair out & writhed around screaming on the floor I wanted to weep. She's been in hospital for 15 months now &, after initial improvements in her behaviour, she has reached a plateau. The long-awaited meds changes still haven't been made. It just all seems far too long drawn-out & I'm having sleepless nights over it again.

Chrissy appeared to get over her first outburst but started again after she'd finished her burger. I'd made cupcakes & decorated them with flowers, glitter & butterflies but Chrissy wasn't impressed. She wanted '2 cakes' & because she's overweight we only gave her one cut in half - a ruse that often works. We couldn't console her by putting one cake in her bag to take back to the hospital either. She went into a violent rage. She threw & smashed a plant pot, & screamed & self-harmed (pulling hair out, banging heels hard on floor, biting & pinching herself) for over half an hour. I looked at her at one point & felt hate - but that was quickly replaced by pity, despair & a whole host of other emotions that these feral, violent rages invoke in me.

Monday, 11 April 2011

Bringing up a Challenging Child at Home: When Love is Not Enough

27 years ago today my first baby was born. I was 23. My rapture at having such a beautiful 'perfect' baby soon turned to a gradual chilling realisation that something was wrong. Initially, health professionals refused to take my concerns seriously & treated me like a neurotic first-time mum. As I searched for answers and struggled to cope with my daughter's violent cyclic outbursts, epilepsy, general sickliness & bizarre behaviour I felt very alone. Not knowing what is wrong with your child is like being lost in the wilderness without a map. In 1999 I decided to write a book about my experiences with Chrissy called 'Bringing up a Challenging Child at Home: When Love is Not Enough,' published by Jessica Kingsley, London. My book aims to offer practical advice for other parents and to give a unique insight into what it is like to bring up a very complex & unique child, who we now know to have severe autism & an extremely rare chromosome disorder.

Tuesday, 5 April 2011

The sensory overload of a hospital appointment

Chrissy appears to have no concept of time but she somehow senses if she hasn't been home for over a week. Last weekend I was away so didn't bring her home as usual. When I phoned the hospital to finalise details of today's appointment with Chrissy's neurologist, a nurse told me that on Saturday, she had donned her hat, coat & gloves & demanded to come home. When her request hadn't been granted she'd become very distressed. So, feeling guilty, I decided to bring her home today after the neurology appointment, instead.

The appointment itself went smoothly. Chrissy veered off into a shop inside the hospital for a diet coke & briefly interrogated a tiny child she was curious about but we didn't have to wait for long to be seen. The neurologist was well-informed & thorough, & I was happy with the meds change she advised. The two nurses that came with us brought the car as close as they could to the entrance so Chrissy didn't have to walk very far with the wind blowing her face - something that makes her react as if she's under attack. She moaned a bit & full-on sobbed at one point but all in all she coped very well.

The reaction came later back at home!

As usual I'd organised everything beforehand so that I could give Chrissy my full attention - I'd even pre-cooked tonight's dinner. Unfortunately, Chrissy wanted her sister's computer even though she now has her own laptop. After screaming & throwing herself & other objects around for 10 minutes she eventually calmed down & played on her laptop at the kitchen table. Another outburst kicked off when her lunch came - meal times & food are often triggers. Eventually, when I added an egg & tomato sauce to her tuna sandwiches, she settled down. Simple solutions but rarely obvious ones....