By Caroline White
If someone asked me to picture what a ‘carer’ looked like, I would probably see someone in a hospital style uniform and imagine someone looking after an elderly person or someone with very complex needs. I would imagine them popping round daily to administer medicine, help them out of bed, get dressed, washed, spoon fed, that kind of thing.
I wouldn’t picture someone in a red, floral midi dress and Adidas trainers, who works for a Design Agency and has three kids. I wouldn’t picture me.
I have never thought of myself as a carer. Ever. I even used to laugh at it. “Carers go free” to the museum. What? What 8 year old kid would be going to a museum without their parent, anyway?
But, of late, I have seen and felt the balance tip. The balance between mum and carer. As my younger kids get older and I see and feel their independence grow and their dependence move away from me, and I see Seb’s peers and what they are up to, I am starting to realise I AM a carer. A FULL TIME carer. And there is no end in sight.
I am not going to lie, its a big, exhausting deal and, honesty being my best policy, some days I resent it. Life should be getting easier but it seems it’s getting harder.
A typical morning in this house involves a good twenty minutes trying to get Seb in the shower. It is relentlessly boring. We have a handbook of tricks we have learnt over the years but it all depends on what mood he is in which will work. “come on, let’s see how QUICKLY you can get in the shower, I’ll time you!”. “If you get in the shower I’ll do chips for dinner”, “if you don’t get in the shower I will take your phone away” “do you want me to tell grandma that you couldn’t get in the shower?” Some days we have to plough through every tactic to finally get the result. Once he is in, guess what? He won’t get out. Being late makes me anxious, it always has – but so often time passes and I can see how we are running out of time to get to school.
I iron and lay his clothes out for him. I have to check his two week timetable to know whether it is sports kit or uniform. He can mostly get dressed on his own, however at this point I am usually running so late so I will have to step in and help speed up the buttons and do his tie. A double edge pain in the butt as it is robbing him of practising / learning. Often he will do the buttons but misalign with the wrong hole so I will quickly have to redo if for him. This morning we were good to go and I noticed he was wearing a Nike t-shirt under his school shirt. So all the buttons had to be undone and done again as I made him take it off.
Shoes. Consistently go on the wrong feet. He cant tie his shoelaces if its a sports day. Velcro isn’t an option and certainly isn’t cool aged 14.
Again, an opportunity for him to learn independence goes amiss as we are too late for me to give him the chance to read his timetable and pack the correct books. Some days, oh joy, I realise in the morning that he has Food Tech…….
He sorts his snack. Of course he does!
In the meantime I am yelling at my middle one to brush his teeth and get his shoes on and forever thankful that number 3 knows not to ask anything of me, which fills me with joy and sadness all at the same time, and packs her own bag, brushes her teeth and is ready with no nagging, just like that.
I have to drive Seb to school. His ‘typical” peers make their own way there but that is not an option for Seb. I have to see he has gone in the door. Reverse this for pick up. At secondary there are no childcare options. 14 year old kids can make their own way home. Even if plans change its not a big deal for most kids that age. It means that every single day I am beholden to his needs and schedule and have to be available, often palming my other two off on all the amazing people who have become my rocks. I have missed out on a lot with my younger two, having to prioritise Seb’s needs and safety above theirs.
Once he is in bed, I have to check his phone. A concept I stole from Sally Philips, Seb is like a “happy drunk”. He lives in the moment with no thought to consequence. Add phones in to the mix and you have a vulnerable boy. It takes a good hour of my mental head space and time.
The other week I allowed my two boys, Seb and his younger brother who is in 11, to walk a short walk home from a friends house. The friends dad texted me when they left. But then I panicked and thought it wasn’t fair of me to give that responsibility to my other son. I knew Seb would 98% be fine but I went through every possible scenario of the other 2%. Will he run off? Refuse to move? Blah blah. They didn’t have a phone with them so it resulted in me frantically running through the neighbourhood with my youngest trying to find them. I inevitably missed them and they were sitting waiting, none the wiser to my panic, on the doorstep. My daughter more confused than anyone by the whole thing.
As the parent of a child / teenager / adult with a learning disability, you become (in part) their eyes, their ears, their guardian, their voice, their advocate, their champion. And it’s a 24 hour / 7 day a week job. For the rest of your life. And I’ve no idea who does it when you’re gone.
Luckily I have a very understanding and flexible employer. There is no way I could have held down my old job and had Seb. And this is just the basic stuff, let alone the countless meetings and calls.
I want to make it very clear, what Seb takes, he gives back. AND MORE. He is the only one of my kids who regularly thanks me for his dinner and says it was amazing. He will clear the table and help tidy up. He will make me a cuppa and will tell me he loves me. He will dance with me to a good song. Swim with me in a cold river. Make me laugh til my stomach hurts. Make me burst with pride with his empathy, kindness and work ethic. I wouldn’t swap him or the last 14 years. But sometimes the emotional and physical load is huge.
Pah. I don’t want people to view me as a carer. I hope this doesnt sound like a “pity post”. I would do it over and over, every day, forevermore in a heartbeat. I love that boy so fiercely, so strongly. I genuinely thank my lucky stars that I can proudly call him mine. But, today, it is hard. Reality, and the enormity of it never ending, is hard. I wake up at night having night terrors that I am about to die and I have 10 minutes to get everything in place for my kids. I take a low dose antidepressant for anxiety but wonder if it should be a bigger dose, that in itself triggers more anxiety as I worry I am getting dependent on drugs.
I am Seb’s mum, I feel PRIVILEGED to be Seb’s mum, and that will always be the most important job in the world, along with being mum to my other kids (cue the guilt, feeling like I never have any time left for them). But it is about time that carers were recognised for being just that – not always uniformed medical staff and certainly not always paid. And I hope that my closest friends will forgive me for sometimes being so flaky and unavailable. Sometimes to just stop and do nothing is all I want to do.
Republished with permission by Caroline White: Down’s Syndrome – Raising Awareness and Shifting Attitudes and https://forceofnature21.com/