Sibling milestones

When you are the proud parent of a disabled child there can be a huge focus on milestones. Often referred to as inch stones, we and many like us, celebrate small things that for our child are a huge achievement.

Running alongside this in our family however are the milestones our older child is reaching. She is not disabled and we celebrate all of the typical milestones you may expect, such as the start of secondary school. What I have observed lately however is her incredible achievements at home, in supporting her sister.

We have never pushed for her to contribute to caring, but inevitably we have had to ask for her help whether that’s running to fetch a pad, or medication, or watching her sister if we need to pop to the loo. In the last year however, she has been a motivated and willing carer alongside us and her support has become invaluable.

Here’s what my awesome 12 (nearly 13) year old can do that I did not have a clue about at her age:

• Cook. She regularly cooks for the family, at least twice a week. These are not simple dishes either. We enjoyed homemade ‘smash burgers’ (ridiculously good) on the weekend. Her veggie chilli nachos are amazing.
• Cook ketogenic meals. She is fiercely passionate about her little sister getting the same treats and foodie opportunities that we enjoy while on a ketogenic diet (for epilepsy). She cooks for her around twice a week. She recently researched and taught herself how to make a ketogenic pizza from scratch.
• Assist during a seizure. If her sister starts to go into a seizure she is there with cushions and starts timing immediately. She is calm throughout.
• · Help support her sister’s behaviour and communication. She ‘tunes in’ to find out what her sister really wants to help get her needs met (her sister is largely non-verbal). She is also adept at diffusing a situation by providing clever distractions that she knows work (one of her classics is a running game where she gets her sister to gently push her and she runs off and runs back).
• Help with personal care including bathing and toileting.

She is rarely asked to help with any of the above, but willingly cares every day.

While being a young carer is tough, it is very clear to see benefits. I have seen her confidence grow, she is cool in a crisis and her skillset is incredible for her age. If I saw that on a CV I’d be impressed.

She can still slam a door and scream the house down with the best of her teenage peers though. And good for her. It reassures me that she gets to do the teen stuff too (although I might not say that at the time...).