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 getting on with our lives. Having a disabled child is more complicated than I ever could have imagined.

Aside from all of the obvious complicated stuff such as EHCPs, DLA, social care support, school transport, education, therapies of all kinds, 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 described her relationship to her daughter as being ‘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, 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.