April 20th. Autism Awareness month continues …
The highs and lows of being a carer. There are many mothers (and more than a few dads I might add!) who are currently at home full time and in the role of full time carer for their ASD children, and sometimes also their partners. It’s a really tough role. Having one parent at home full time places such a strain on the family financially. It is also a very demanding role physically and emotionally.
Most parents would relate to feeling like a servant, sacrificing your own needs for the needs of everyone else, getting minimal to no sleep, constantly refereeing arguments and other issues as they arise, rarely getting time to yourself for time out, or even the opportunity to connect with friends. This is the life of a carer but the emotional demands the intensity are enormous and unrelenting, and life is far more restrictive. It can be extremely isolating and rather dehumanising to constantly be caring for others, and having no room to meet your own needs.
Many people without children with disabilities don’t fully realise the extra demands placed upon the family. I’ll use our family as an example – and please be aware that we have a significantly easier circumstance than many other families! I work a 25 hour week which essentially sees me at work from 9-2:30pm Monday to Wednesday, with two shorter days on Thursdays and Fridays. I have grandparents who thankfully do school pick ups on Tuesday and Wednesday afternoons. During the week, I have at least one appointment with each of the boys teachers; sometimes an appointment or more often an email to the school’s learning support teacher; and appointments with one of either medical professionals, speech or occupational therapists. Each week I review the medication and ensure we have scripts ready and that we are stocked adequately with medications. If there is a special event at school such as the cross country, I need to ensure that I start preparing the boys 5-7 days in advance so that their stress levels (and therefore mine!) remain low. If there are free dress days or Pizza days at school we need to prepare for those too. If there is a variation in the timetable at school, we need to prepare for that. It requires a lot of mental and emotional energy to do all this and it often requires you physically fronting up to the school and having a conversation with someone about how you might manage a situation. It is exhausting.
Coupled with this physical demand, there is the emotional demand. Many carers of individuals often talk about living on adrenalin. Individuals on the autistic spectrum can often be unpredictable. You can’t always predict what might set a meltdown off; or when they might randomly just run away from you. You constantly need to try one step ahead of them trying to avert disaster and anxiety; and then when meltdowns occur, long after they have moved on, you’re still feeling jaded and traumatised. I refer to this heightened state as having ‘my spider senses tingling’!!! My spider senses are always tingling with these kids. You never know what might set them off and even after the event, you then run diagnostics through your head about why that happened and how you might strategise for that in the future. Your ‘senses’ are constantly on high alert. The level of stress and adrenalin is high. But I always say, that something has to eventually happen with all that adrenalin. You have to find a way to make time for yourself and ensure that you get rid of that extra adrenalin – that your ‘spider senses’ have time to not tingle!!!
This week is my first week on leave and I am amazed by the change in my life. Usually my day is an adrenalin fueled process of rushing to school, settling the boys (often a challenge!), rushing to work, putting in 100% whilst I’m there, and then immediately rushing back to collect kids (never knowing how I will find them!) and then getting home to washing, lunches, dinner etc. This week, I’ve had more time to settle the boys of a morning which has really helped. I’ve had time to do meal preparation and chores whilst the boys are at school. I’m calm when I do the pick ups because I’ve had an actual mental break from stress, and everything kind of just happens. I’ve had time to blog in an unhurried fashion, to chat to friends on the phone and even have a coffee with friends. Even though I’ve been collecting James at 12-12:30pm and Tom at 2:30pm – life is still very much more relaxed and an awful lot more manageable. I am taking deep breaths and allowing myself a few pleasures I’ve not had time to enjoy for a long time – like playing the piano! I am realising that I have been totally exhausted and burnt out, and that I’m going to have to make some huge and informed changes before I return to work in a few weeks.
Many kind people have often asked how they can extend help to families with full time carers. Like all things in life, it’s the little things that help. Drop a meal over every now and again or offer to take a load of washing home for them. Offer a listening ear or give them a break for the afternoon. It’s the little things that make a huge difference. It may seem like nothing … but be assured it’s something!!