Tears for Fears

Imagine the scene... I’m sitting in the front of the Global Care van as it bumps down a dusty pot-holed road. The sun beats down on my clammy body through the open window. I try not to flinch as we weave about avoiding larger bumps, people, cars, goats and cows. We reach a narrow bridge barely wide enough for the minibus, and our driver, Seat the Centre Manager, tells me it was impassable during heavy rains. I’m struggling to write notes in this bouncy environment as Seat and a physiotherapist tell me about the children we’re going to visit in their homes- my notebook is full of barely intelligible scrawl. Today has been a day of grim stories and my head is already crammed– I want to catch the full stories and I won’t remember anything I don’t write down straight away.  At this point, the only difference from trips to Uganda is that the dust filling my nostrils is grey not red (plus we have a physio who is also a speech therapist on the team!).

That was this afternoon. 

The morning had broken me.  We heard from a group of Mums… goodness its hard listening to mothers of children with disabilities. So… you’ll be pleased to know that my heart is not made of stone…. and …. we’ve worked hard today! 

We spent several hours today with my old friend ‘the logframe’. For new readers, this is a tool used in the development world to help funders decide whether or not they want to give any money to a project. Tom is becoming a bit of an expert at logframes. The rest of us are getting good at asking the right questions and writing what Tom tells us on flipcharts! The idea is that a local team present Global Care with a concept for a project, and if the UK management think they might consider funding it – or taking to a potential external funder, then the local and UK teams work together to build a robust proposal. Sometimes that needs a site visit.  On this trip we’re looking at a programme of work to support children with autism living in Bathore. Writing proposals is not an easy job (there’s the language barrier for a start) – but it’s exciting and inspiring work. You get to see the passion and vision of local teams and it’s given us huge respect for Global Care – they don’t fund projects lightly.

So… with that at the back of my mind, we joined a meeting for mothers of children attending New Day Centre this academic year. Some have been coming a while, for others it was their first session, their children having only just started at NDC.  Within about 5 minutes of the 1½ hour meeting, several Mums were in tears as they described their own struggles, their children’s problems, and asked the visiting expert (Tom) for advice.  Some days I realise the privilege of being married to this man.  He can facilitate writing a logframe, then humbly listen to a group of desperate Mums, dispensing empathy and care while repeatedly saying he’s not an expert, he can’t help… and he can’t tell them their child will be OK in the future.  He’d been briefed about a few things the therapist wanted him to say to the parents, hoping they would listen to a doctor.  But after that came the questions. Mums shaking with anxiety, trying to hide tears, crying openly, seeking reassurance and advice.
·         How can I stop my child with autism from biting his hand when he’s emotional – happy and sad?
·         How can I stop my child with autism spinning round and round?
·         Is my child with autism going to be healed? I mean completely healed? Will he have autism as an adult?
·         How can I interact with my child? He lives in his own world and won’t communicate.
·         The only word my child can speak is ‘mum’. Will he get more words?
·         My child knows he’s different – how can I stop him worrying that other children won’t treat him the same?
·         Why does my child with autism cry a lot?
·         My child was born premature. He’s 5 now. Will he ever walk?

My Tom quietly tells these women that they’re amazing, that each of their children is unique and special. He tells them about the children with autism in his hockey club – and how much they’ve achieved … and become accepted by the rest of the club. He says, “I think Mums are awesome.” 

I’m a wreck. At the end of the meeting I’m crying with the tearful women, hugging the one in need of comfort as hard as I can.

These may be questions you’d hear from Mums in this situation anywhere in the world, but many of these parents live with very limited means. If you have no income, you might use your child’s social support to feed the whole family. If the school has no trained teachers or classroom assistants, they won’t take children with physical or learning disabilities. If you can’t afford transport, your child can’t access specialist services, therapy or school. If you live down a pot-holed bumpy track, how can your disabled child get to school several miles away? 

If you’re a single Mum with other children, how do you cope with your child with disability at home all day? And how do you keep going if there is no-one to give you a glimmer of hope? I thank God for the team at NDC who work so hard to make a difference and who don’t speak platitudes or empty comfort, but actually work at changing lives.  One of our home visits was to a little boy who started therapy at NDC in a wheelchair.  Now he walks unaided – he ran inside his house when he saw us arriving. He had 1 hour of physio twice a week for 14 months.

This is not a straightforward country. These are complex problems. I really hope that together we end up with a proposal that attracts funding for NDC.