As many of you know SPACE is ran by a small team of volunteers. We use our professional skills and knowledge to support families with ADHD. This week is National Volunteering Week, which seems like a good time to talk about the challenges of managing a task of this size, with the constraints that come with running a busy organisation with such limited resources.
At present we primarily work with parents of children with ADHD. The key strength in our current structure is that we are firmly part of the community we serve. The reason that the four of us run this charity is because we all have at least one child with ADHD. SPACE was formed to create a support network that didn’t exist. We came because we needed support for our own families and we stayed because we wanted to support those that came behind us.
The task ahead of us is huge, but we’re determined to tackle it head on. We have worked hard to build our knowledge on ADHD and make sure that we are always up to date on new developments in the scientific community. We have established positive relationships with not only the families we support, but also within the local SEND and national ADHD communities.
Parenting is hard and parenting children with ADHD can sometimes be especially hard. Often we as parents are required to fight for our children, because for many of them school can be problematic, particularly for those who have difficulty managing their behaviour during the school day. At home, as parents, we sometimes fall into the trap of fighting with our children, leaving us trapped in the middle and on the receiving end of everything from everybody.
Over the years we have heard every myth, stereotype and ridiculous theory about ADHD and it is staggering that after all this time, we still talk to parents with a new diagnosis and hear the same nonsense that some of us heard over a decade ago about our own children. So much more is known about the condition today, yet the same old stigma and misinformation is still being fired at parents. Children are still struggling in education. Those with Inattentive Type ADHD are still being ignored and misdiagnosed. Parents are still being made to feel bad about considering whether they should let their child try medication and people with book deals are still making money by claiming that it doesn’t exist!
ADHD isn’t necessarily a bad thing, but living successfully with the condition usually needs knowledge, support and a few practical techniques. Children and young people need to know that their brains work differently and learn how to mitigate the potential downsides. Parenting a child with ADHD often needs a different approach, one which accommodates those differences. Parents also need information about the various local services and unfortunately many of them also need to know their rights as they manoeuvre the various systems affecting children with special educational needs.
We currently work full time in our day jobs and squeeze multiple jobs as part of SPACE into morning commutes, lunchtimes, evenings, late nights and weekends. We regularly use our annual leave to exhibit at open days, attend meetings with professionals from the NHS and even attend the All Party Parliamentary Group on ADHD at Westminster.
The problem with squeezing multiple jobs into gaps that don’t exist, is that there isn’t enough time to do everything. Our current structure simply does not afford us enough resource. To do everything on our list some of this needs to be a job, ideally several jobs. Resources are often referred to as The 3 Ms – Men, Money and Minutes. We are four women, with no funding and no time and yet despite these facts, year in and year out we make a difference. Despite the small team size, this is actually a 300% increase on one of our previous incarnations, where Michelle ran the group alone with no formal support.
SPACE currently has no paid staff and every single thing we do, is done by one of us. Between us we cover every role, in every department unpaid and top of our day jobs and family commitments. It’s frustrating when we have to park ideas due to a lack of funds or we miss opportunities to attend events, but mostly it’s frustrating that we could do more to help families if we had more time and more money.
At present we are not a funded service and have existed with no financial support from either the NHS or our local authority. As we currently have no funding streams in place we hold occasional fundraising events, our most recent one being our sponsored zipwire.
During 2018’s ADHD Awareness Month we put on a conference called the World of ADHD According to SPACE and the conference was primarily funded by the team hurtling down some Welsh mountains along with some additional funds provided by a small number of conference supporters who paid a small amount to exhibit products and services that we felt would be useful to local families.
Over the years we have managed to keep our costs down. Our monthly meet ups have been generously supported by local business owner Heather, who owns Funky Monkey Coffee Company and allows us to take over the venue free of charge each month. This has provided us with a welcoming and comfortable venue, in which to meet parents and we will always be extremely grateful to Funky Monkey for their support. We have managed to balance the books for a very long time, but this has also impacted on the amount of activities that we have been able to do so far.
The good news is that there are numerous sources of funding for 3rd Sector organisations like ours. The bad news is that actually securing that funding requires certain skills. Making time to research the available funding pools and produce written bids is challenging. In many organisations there will be a specific person or even a whole team of people responsible for bid writing, so we’re playing catch up. We’re attending events, using online resources and accepting offers of help from people in our personal networks who have been kind enough to help us learn those skills. We are also trialling other fundraising activities including Amazon Smile and JustGiving.
Despite the hard work, the frustrations and the challenges, we love what we do. We love being ADHD Champions. We love that we get to help other families. We love being able to reassure parents that ADHD isn’t always a bad thing. We love highlighting positive role models and sharing in each others sucesses. We love the community we’ve built and no matter how our organisation changes in the years to come, we’ll be here to welcome many more parents to our tribe.