It's Learning Disability Week, an annual campaign led by Mencap to make sure the world hears what life is like if you have a learning disability. One of our Parent carers has been kind enough to share a day in her life as Mia's Mum.
It’s 4am. Not even the birds are up. I hear the usual rustling of covers and a small sigh escapes my lips. I count on one hand how many hours of sleep we’ve both had. Not enough. This is the usual morning ritual (on a good day). 9 years and counting. Mia sits up and whispers ‘Mummy I need a wee.’ I drag myself out of bed ready for the first catheter of the day, bracing myself for 101 questions that need answering before my morning cuppa.
Mia was diagnosed with Spina bifida in-utero at 20 weeks. Her mobility is good although trips and falls are frequent. At 5 weeks old she had a shunt fitted to prevent the development of hydrocephalus. Shunt failures or blockages are random, can be acute or chronic and are life-threatening.
Hydrocephalus is often described as a ‘hidden disability’. Mia now presents with several specific cognitive challenges and neurodiversity which includes an ADHD profile of impulsivity, attention deficit, high levels of anxiety….and a sleep disorder.
The questions come thick and fast. A random stream of consciousness that requires a delicate balance of reassurance and boundaries. Not easy when my eyes are barely open, and I’m continence managing. I have tried to explain to Mia that my ears still work when my eyes are closed, but she is having none of it!
Mia can self-entertain better these days. She trots back off to her bedroom and does some colouring in bed before she is allowed her tablet (and headphones) at 5am. I collapse back into bed wide awake. Her circadian rhythms are now mine.
The Carer’s Support Equipment Service provided the tablet last year. It’s invaluable for us. Mia has information processing delays which makes formal ways of recording information more challenging. Using her tablet allows her to access her learning easily. It also allows me to leave her unsupervised at 5am. Thank you Carers Support West Sussex!
Motivating Mia to get dressed, clean teeth and eat can be a challenge. Games, countdowns, races and lots of dangling carrots (usually in the form of after-school slime) are required to get out in time for school, even though she loves going. Structure and routine help manage anxiety and Mia is very sociable. She is not happy when it’s the school holidays…. a marked contrast to her older brother, currently sailing into hormonal waters!
Sensory-seeking play is the after-school activity of choice. She loves it! Me? Less so. I have finally succeeded in persuading her that less is more. This has taken years! Armed with two pots of slime and two pots of glitter, she disappears into sensory bliss. She once told me that it makes her feel ‘fizzy’ all over. Who can argue with that?
Emerging from her glittery slime fest, she turns her attention to ‘Alexa’ and embarks upon a one-girl musical extravaganza. Poor Alexa often gets shouted at if she doesn’t quite understand requests immediately. Peeking in at Mia’s expressive performance of ‘Let Your Freak Flag Fly’ (Shrek- the musical) is definitely a highlight of my day!
It’s nearly bedtime. After doing her ‘movements’ (reflex integration exercises) taking her meds and the last catheter of the day. Mia settles down for a book. Unsurprisingly she is asleep within seconds. I lay next to her wondering what time she’ll be awake tomorrow.
For single parent carers like me, support services like Carers Support West Sussex are so important, never more so than now. As well as the Equipment Service, I have annually accessed the Carer’s Wellbeing grant for self-care. Anything to lift my sometimes-exhausted spirits. Knowing I have an organisation like this to fall back on for support, really helps keep those all too familiar feelings of parent carer isolation at bay.
- Mia’s mum.
Find out more about our support for Parent Carers and Learning Disability Carers. Learning Disability Week is a campaign run by Mencap. The primary aim of Learning Disability Week is to raise public awareness of learning disabilities and those living with and caring for them. The theme of this year's week is art and creativity.
Other useful links:
Information and Social Event Friday 24th June
We would like to invite you to join us at our event at the Rowans Day Centre in Worthing. This is an afternoon for those who care for someone aged 16+ with a learning disability to find out more about existing and new services which may be helpful for you.
We are delighted to also now be joined by the Learning Disabilities Health Facilitation Team - nurses who are specialised in facilitating health care for people with Learning Disabilities.
Light refreshments will be available and time for carers to talk together, or speak with one of the organisations attending.