Thursday, 27 January 2011

Cuts in services for the disabled

Attended a Mencap Big Cuts event today. Received loads of useful advice about fighting the cuts. Met other parents, who, like me, are frightened of what the future holds for their disabled children. What's happening already is bad enough - cuts in Mobility component of DLA & Disability Law Service, respite centres being closed down etc. Government plans to make personal budgets compulsory for people with disabilities are the most scary. Disabled people will be allocated a budget based on their support needs then, if they have the capacity, make their own decisions on how it's spent. In many cases the task will be vested to families or, if they have no family able to do it, outsourced to 'brokers.' Essentially, the government would privatise learning disability services like they did pensions - & look what happened there!! Although many charities, including Mencap, support the principles behind personalisation - giving people choice & control - there is concern that personal budgets would be inadequate & used as a 'stealth cut' to reduce the amount of social care provision made. Navigating the system will be be more daunting in some cases than others - hitting the most vulnerable or those with additional complex health needs. Not a prospect I'm looking forward to :(

Monday, 24 January 2011

Sharing stories with mum of Chrissy's genetic 'twin'

Comparing notes with another parent of a child like Chrissy was something I'd always longed to do. Until her diagnosis 4 years ago that wasn't possible. Recently, the mum of a 6-year old with the same 1q21.1 micro-deletion as Chrissy got in touch through Unique, the support group for families affected by a rare chromosome disorder. Initially, we swapped information by email & exchanged photos. By coincidence, the mum had already read a copy of my book 'Bringing Up a Challenging Child at Home.' So she already knew more about Chrissy than I knew about her daughter, Molly Mai. Today, we spoke on the phone for the first time. We plied each other with questions & shared stories for over an hour & were astonished by how much our families had in common. Their family sound lovely. Molly Mai is more mildly affected than Chrissy but it is so comforting to know that we're not alone in our experiences. We're looking forward to talking again, & maybe one day we & our daughters will meet. Thank you Unique!

Saturday, 15 January 2011

Autism, communication - and a breakthrough

Using effective behavioural strategies are all very well but it's demanding & exhausting caring one:one for an adult with autism. Then sometimes, you get a small breakthrough that lights up your whole day.

This weekend, still treading cautiously after our difficult Xmas, I painstakingly used symbols & planned every word I said. It worked reasonably well until today over breakfast when Chrissy demanded her favourite dessert. I told her that we have 'puddings' at dinner time, not breakfast time but she grew increasingly insistent & agitated. I ran out of diversions & strategies, but didn't believe that giving in was the answer in this situation. As I prepared myself for the inevitable outburst, to my amazement, Chrissy paused for thought & came up with her own ingenious solution - a massive step forward. "Can I take my pudding to Linton?" (the ward she lives on) "Yes," I replied, removing it from the fridge. "Can I have a bag?" she asked, then asked for a spoon, which she insisted on selecting. "Make a bow" she ordered. I tied the bag up, gave it to her & the immediate storm passed....

Thursday, 13 January 2011

Test to check DNA flaws in prospective parents

http://www.dailymail.co.uk/sciencetech/article-1346543/Pre-conception-test-flawed-DNA-eliminate-deadly-childhood-diseases.html

It is important to remember that only 600 of the better known conditions would be examined here. The test would miss many rarer chromosomal disorders affecting 1 in 200 of us. Tiny but equally 'catastrophic' genetic variants are being identified as culprits for previously unexplained learning disabilities in individuals. The mystery is that, in some cases, controls can share the same genetic variants without adverse effects. We still have a long way to go before genetic research can explain these differences. Strict guidelines need to be followed so that conditions tested for will definitely result in either very early death or severe suffering.

Monday, 10 January 2011

Women with undiagnosed autism

Increasingly, more females are being diagnosed with autism but females present differently to males, with less obsessional and pedantic traits. This means autism is less likely to be suspected and many women may be living with undiagnosed ASD like 32-year old Shona was.

I've been writing Shona's heart-breaking, inspirational story for a national newspaper and a women's magazine over the weekend. Throughout her life, Shona hasn't been able to understand why she has never fitted in anywhere. She tried hard to get on with people but she never managed to form lasting close bonds. Six years ago everything fell into place when doctors diagnosed Autism Spectrum Disorder (ASD). Shona was relieved finally to learn that something was wrong with her - she wasn't a failure and a misfit.

I'll blog again when the articles come out.

Tuesday, 4 January 2011

Autism, communication & flash points

I was jittery about having Chrissy home this weekend after our Xmas Nightmare but things were much better. She had one outburst lasting 10 minutes, in which she self-harmed & stripped off all her clothes. It kicked off as I was preparing dinner. Meal-times, like transitions from one activity to another, are flash points. We had a near miss over a meal the next day when I served Chrissy nachos & described them as 'corn chips.' She latched on to the word 'chips!' I could have kicked myself - it's so key to use the right words when communicating with Chrissy.

We made a conscious effort to use her symbols more often, & found them very helpful, eg when I gave her her morning medication, she fussed about wanting to go back to sleep. I handed her the picture symbol card, gave her time to take a good look & tried again. Understanding exactly what was expected of her helped & she took her pills calmly.

We try to learn from Chrissy's setbacks but sometimes her threshold for outbursts is so low we can only ride the storm & wish for the umpteenth time that she could tell us what she's feeling.