Charity choices.

I met some lovely people this evening.  We walked into the room, knowing hardly anyone (actually there was one other couple we knew) and walked out having connected, chatted and made friends easily with a number of people.  What made it so easy?  We all had something in common.  We all had a child with Autism.  

We have not had very much to do with the charities surrounding Imogen's labels.  Not for any prideful, 'we don't need it', issues (its quite clear we do!) But simply because we haven't had the capacity.  If Imogen only had one diagnosis it might have been easier - you would know who to give your allegiance to!  But it is more like playing cards, 'pick one, look at it, put it back in the pack!'  

We have 'dabbled' in charities.  Hemihelp (for children with hemiplegia) gave us some great advice and have a really useful parents forum on their website. So when Imogen was first diagnosed I spent a good six months writing to people on the forum and my Dad also ran a half marathon raising money for them.  

I also spent a bit of time on the Dystonia Society website when she was diagnosed with this strange and unpredictable disease. The actor who played 'Charlie Fairhead' in Casualty was their patron, being a sufferer himself, and we continue to dip into both of these great charity websites. But then the epilepsy rose its head - I knew nothing about epilepsy, but I knew there was an Epilepsy Society as we lived in the village where their headquarters is based. 

So again I read up on their website, but then the wave of the next two diagnoses - ADHD and ASD (don't even start me on dyslexia!) and with them a whole lot more charities.  I found it all, the number of labels, diagnoses, charities and websites, quite overwhelming and backed off from most.  Not because they weren't friendly or helpful, but there was just too much information, I felt like I was constantly playing that game at the fair when you hit the gopher on the head and another pops up.  Just to keep on top of all the medical appointments was a feat, let alone try to make contact with charities, and which would I pick anyway?!

When we moved up to Derby I was put in touch with 'Umbrella' which is a charity in Derby for families with Special Needs children of varying diagnoses. That was helpful and we became members. The group met once a month (and still do on the first Wed morning each month) at our church, but I still kept my distance.  I didn't intend to keep my distance and I wasn't sure why I was.  I only recently realised its because  I just don't have the capacity.  Now that sounds a bit crazy when it is a charity that in its nature is supportive and caring (as most are), but actually to be involved in any charity takes time. Time to fund raise, to listen to other parents, to go to meetings.  And I just didn't have any margins to do that, I guess fear of being sucked into something that I couldn't cope with kept me away.

This evening I think may have been a turning point.  We went to a meal.  It was a meeting of the NAS (National Autistic Society) Derby Branch.  It was great, there was a natural connection.  People who understood.  People who had been through similar experiences and had either walked a similar path or were walking it now.  I met some people who I have a feeling are going to become good friends.  And I realised that for the first time in years, I must have found some capacity!

(I do want to say at the end of this blog that ALL the charities that I have had any dealings with have been supportive, helpful, friendly and ready to help.  It is simply our journey that has stopped us getting more involved in any one charity.   If you or someone you support is struggling and needs support in a certain area - please do contact the relevant charity.)