Somehow, in non-disabled social settings, my parental pride gains an extra dimension. At the CoDPuk (Children of Deaf Parents UK) Christmas party the other week, Isobel stood out from the other toddlers, who were busily running around, chasing each other, scoffing crisps, or tearing wrapping paper off their presents. She wasn't doing any of those. Yet far from being ashamed, embarrassed or jealous, I actually felt privileged to be her mother.Some may think me deluded. These are usually the ones who cannot see past the disability, writing people with disabilities off without proper regard for their true capabilities as human beings.
I won't deny it: Isobel has a larger mountain to climb than non-disabled children of her age. But it explains why, each time she has a breakthrough - however small - the sense of euphoria I get is better than a Lottery win! 'Yes!' The big grin says it all.
Both for Isobel and for us, the climb is long and arduous still. There's no knowing when or what her next goal might be. But by working with her as best we can to enable her to reach those goals, we strengthen our bond even more. So what if Isobel is not mobile? No-one can say that she didn't work twice as hard to get to where she is now. Effectively, she's already shown far more determination than non-disabled children have at her age.
Last month, Miles took Isobel to the PACE Centre in Aylesbury. I'd arranged for her to have an initial assessment there, to see what could be done to build on all the therapies she'd already been having.
PACE is more than just a therapy center for children with motor disabilities. It provides programmes of integrated learning inspired by Conductive Education, addressing physical, academic, social, language and emotional development. Rather than focus on the negative aspects of the child's development, teachers take a holistic, whole-child approach, targeting areas for improvement and encouraging them to 'believe in their independence' as the website puts it.
'Ask me not what I can do for children with cerebral palsy, but ask me what they can learn to do for themselves,' the founder of Conductive Education, Dr Peto once said. It's an attitude that appeals to both my and Miles' crusading sides - and not without reason, as the video below shows.
At this stage, we have no plans for Isobel to attend PACE as a nursery. She hasn't started mainstream nursery yet: we need to arrange a SEN statement for her first, so that every nursery or school she goes to understands why she would not benefit from their school-based SEN provision (this is called School Action and School Action Plus). She would then alternate between mainstream nursery and weekly sessions at PACE, building up to three times a week.
It takes time. The council's Inclusion Team hasn't received any information from Dr Mallya, which would otherwise prompt a visit from an educational psychologist to assess Isobel for 'statementing' purposes. So the onus is on us to request it ourselves. Even if Isobel was to attend PACE full-time she'd still need the statement for later, so we might as well.
What is interesting is how PACE would affect Isobel's other therapies. Helen said she would have to withdraw her physiotherapy services once Isobel starts her sessions - and the rest of the Child Development Team have implied they would do the same. Essentially, NHS therapies cannot complement discretionary therapies, due to the conflicting principles they promote. To try and do both risks confusing the child and could impair progress.PACE is not cheap. £25 per session is the minimum contribution they recommend, and the programme could be two years or more. We've been advised to apply for a grant to top up the costs, which could be as much as £40,000. Fundraising is on the agenda for next year; Isobel's first session is earmarked for 24th January, 2011.
But people believe in PACE. Whole families move to Aylesbury so to be close to the center. DJ Dave Lee Travis has fronted their campaign, and BBC TV's Children in Need did a feature this year.
Steep though PACE's costs are, that we are quite prepared to stump up as much as we can through our own fundraising goes to show how much we believe in Isobel. Of course, we have never felt so broke. Even so, the potential rewards could bring us more privileges than any Lottery winnings could possibly replicate.
