Complicated

I wanted to share the blog below that I recently wrote for Firefly. Before I do, here’s a Taz update. Little Taz went into hospital about a month ago for her VNS replacement surgery. In true Taz style, she powered through it. Setting off in the car at 6am, general anesthetic, surgery, home by 2pm, under strict instructions not to engage in any strenuous activity that could damage the delicate wound on her chest. By 3pm that same day, her brilliant carer and I found ourselves wrestling her as she tried to launch herself onto the trampoline in our garden. In hindsight we should have just let her on as us trying to restrain her was certainly more risky. The next day she was bouncing. We were initially told two weeks off school but, thanks to an open minded surgeon giving us the green light, she was back at school after four days, with her awesome team who had everything set up for her, even down to her own private outdoor play space. I love that school, have I said that before?

Taz’s wound has healed brilliantly and she’s back to Tazzing around everywhere despite seizures raining on her parade (still most nights). She was due to have a day at respite today, our chance to chill. My plan was to have a chilled day with Big Sis and lunch out. As it happened, Taz had a seizure at 10.30pm, was up from 1-3am and then up for the day at 5am. But we could sleep today. Nope. She went to respite, had two seizures and was home a few hours later. My husband is now looking after her while I have escaped to write. We still got the burgers and chips we planned (thank you, Deliveroo). Big Sis and I watched Mean Girls (how is that film 20 years old?) while Taz slept/dragged us around the room.

Update done. Here’s the original blog:

Why’d you have to go and make things so complicated?

Avril Lavigne had a point. She may not have been talking about raising a child with a disability, but it’s this lyric I hear when I hit upon another slew of jargon and wordy nonsense that stands in the way of us getting on with our lives. Having a disabled child is more complicated than I ever could have imagined.

Aside from all of the obvious stuff such as EHCPs, DLA, social care support, school transport, education, therapies, medical appointments, surgery, hospital admissions, medications, training, payroll, HMRC codes and so on, there are hidden surprises too.

We recently went to our solicitor to review our wills and make sure things were in place for our family. What I thought would be a straightforward boring bit of admin turned out to be far more complex (and expensive) than I could have imagined.

She stopped us shortly after we started talking, and asked us if we knew about trusts for disabled people and that if we left money to our daughter in our will without a trust, it could affect her benefits and future provision.

We had no idea about this but thankfully she helped us set one up (at a cost of £1200+ – a bit more than your average will, but hey, nothing like a disability price tag).

We’ve also had to let close family know to do the same if they had intended to leave her anything. It’s an awkward conversation to have, and, because disability is not talked about enough, a topic that most of us would have not even considered. No one tells you this proactively, you have to go and seek this information out.

One day I’d love to see a guidebook given to every family with a disabled child upon diagnosis that includes all of this stuff.  At the very least, those giving diagnoses should be referring families to Contact, the national charity for disabled children that has an impressive library of advice and resources.  

I recently came across the most accurate description I have ever read of parenting a disabled child. A mother, talking about her disabled daughter, said she felt ‘like a dragon curled around her’. This immediately resonated for me.

I know that however complicated things get, while I am here, I will be that dragon. It still surprises me how often I have to lift my head and breathe fire. Challenges come at us from all angles, provision being threatened, seizures, accessibility issues, tuts and stares from members of the public. Yet somehow the fire doesn’t run out.

While the fire will never burn out when it comes to protecting my children, I am frequently left exhausted from living in a world that is not set up for disabled people. When I do find surplus energy, I am determined to channel that into projects to make change. Goodness knows we need it.