If there’s one thing I’m learning from being a parent, from being a special needs parent, from being a member of SWAN, from doing the Partners in Policymaking course … in fact from all the paths that life has sent me down since becoming a mother, it’s that sometimes you’ve just got to stop fighting and roll with it.
Since January I have been trying – and mostly failing – to get to a Monday morning 6am pilates class that I signed up for. And beating myself up each week for hitting the snooze button instead of jumping out of bed and out into the darkness. By the end of the term I have finally accepted that I am just never going to be one of those people who can get up an hour earlier than the rest of the household and kick-start their day productively. I’m always going to function better late at night than early in the morning. So I’ve decided to stop fighting it, and signed up for a much more manageable 10am Wednesday class instead.
Since forever, we have been trying to teach Benjamin to communicate with a simple switch. A big, colourful button that he can push to activate a toy, or sound a noise – anything that means he plays an active part in what’s going on around him. The problem is he can’t really raise or lower his hands in a controlled way (yet), and he also cannot see his own hands so has little awareness of what they are doing. He is, however, now pretty awesome at moving his head from side to side. So his OT had the idea of moving the switch up to beside his head (Why didn’t we think of that before?). Working with what Benjamin can do, rather than frustrating everyone pushing on with something he can’t, means he is now making leaps and bounds in switching and will be able to work towards more complex switch-based communication.
For the first few months (years?) after Benjamin was born I couldn’t believe there was no obvious explanation for his needs. I spent hours googling combinations of symptoms, following up references, emailing the names of potential genetic mutations to his geneticist. I didn’t want to be the only parent who couldn’t answer the question “What condition does your child have?” with a simple phrase or a tick in a box. Now, of course, I know we are not the only ones, not by a long chalk! In fact, 6000 children are born each year in the UK with a Syndrome Without A Name. Now that we are members of SWAN UK – the charity that supports families of children with undiagnosed conditions – it matters less whether we ever find an answer or not, because we are surrounded by people who “get it” anyway.
Of course, there are still battles to be won and changes to be fought for. Having a disabled child is hard. Having a disabled child in the UK in the age of austerity means every ounce of support has to be contested. Having an undiagnosed child makes it harder to access the benefits system, harder to make sure Benjamin receives appropriate medical treatment, harder to get the support he needs to attend school safely, harder to arrange travel insurance, harder to access childcare and therefore to work, and so on … But all these battles are made easier because we have a tribe now. We have access to a UK-wide network of other parents who have been there before us, who have the answers to some of our questions, who can tell us which battles are worth fighting and which are just a waste of precious energy, who can provide a voice of reason in the middle of the night, and a much-needed boost when the struggles seem never-ending.
In the beginning, I wasn’t sure whether I needed a support group. I railed against the idea of sharing my child’s medical details with an online community of people I had never met. I would fight my own battles; I didn’t need any help. Now I realise that it’s not all about the fighting. It’s about sharing the highs and the lows, having a laugh, making friends, sharing a love story. Like a pride of lions, SWAN parents work together, look after each other, and allow each other time to rest. We’ve got each other’s backs. We’re #ROARsome. This Undiagnosed Children’s Day (Friday 26th April 2019), I’m proud to have a SWAN, happy to roll with his needs, and grateful to be surrounded by lions.
We found love … So don’t fight it … Life is a rollercoaster … Just gotta ride it (Ronan Keating, Life is a Roller Coaster)
You can join SWAN UK at https://www.undiagnosed.org.uk/join/ and support them at https://www.undiagnosed.org.uk/donate/. Please share this to help us to reach the thousands of families with undiagnosed children who haven’t yet heard of SWAN UK.