I saw a social media post the other day that said: “I swear special needs parents could run all the large corporations and several medium sized countries if we weren’t so tired.”
There’s something in this.
If you’d asked me what skills I thought I might develop as a parent carer, I would probably have said things like patience, resilience and juggling (metaphorically; although catching stuff, coordination and dexterity plays a part in getting through the days too). I had not foreseen the skills I would need in advocating for my child both in writing and verbally, diplomacy (telling doctors that while I am really grateful for their input and thankful for the NHS etc etc., I don’t agree with the plan) and, most recently HR skills.
Our long term enabler left recently, she is awesome and is pursuing other ventures so we had a very sad goodbye. I quickly realised I had made a rookie error in only employing one enabler.
This meant that when she left, we had no respite.
I have spent the last two months finding a new team of enablers. That has included:
- Advertising the role – I did this only within trusted networks
- Interviewing people
- Trying to fit all the pieces of the puzzle together so that all shifts are covered between five (yes, five) different people
- Setting up payroll, contracts, DBS checks and initial introduction sessions
- Setting up online training for all new recruits with my daughter’s epilepsy nurse
This is a lot for anyone. For parent carers to have to do this sort of stuff on top of our caring role and the mammoth amount of paper work we have to do day to day is beyond exhausting.
It has made me reflect upon the incredible journey we go on as parent carers, and the skills we gain along the way. Only there is no manager saying well done, giving us training where we need it, or rewarding us with a pay rise or promotion.
This is just staying afloat stuff. It mostly goes unseen.
There is also a bigger piece about the skills parent carers can bring to workplaces and the need for employers to recognise this and harness these talents. There is much mutual benefit to be found here; as a working parent carer myself, I know the value of being able to step out of my caring role for eight hours and use my skills in another way. I can also make sure that I use my voice in the corporate world to speak up for the disability community.
If we’re not in this world, with a seat at the table, then we are at risk of being overlooked. I will never not speak up.
Reposted with permission from the author at https://www.fireflyfriends.com/
