Becoming a parent to a disabled child can sometimes mean the future we envisaged looks different. Things may look physically different if our children need special equipment. For us this was a gradual process and one which took some adjusting to.
Our little girl has severe epilepsy and a severe learning disability. On the face of it you may wonder what equipment she needs. Despite not needing as much equipment as many other families, we do have more than I could have imagined.
Here’s what we currently have; two special needs buggies, a helmet which she wears all of the time, a special feeding chair so her head is less likely to fling back during a seizure, a special bed that she can be zipped in to so she does not get out and have a seizure in the night, a drop harness for when her seizures are so frequent she needs to be held up, a heart rate monitor for focal seizures, a bed monitor for tonic clonics (her main type) and a Vagus Nerve Stimulator magnet.
It’s quite a list, especially when all of it (apart from the buggy) is for epilepsy.
Equipment suddenly invading your personal living space is difficult. For us it felt frightening, alien and most of all, I felt sad that we needed it. Without doubt the helmet was the hardest thing to adjust to.
It suddenly and clearly marked my daughter out as being ‘disabled’. It brings with it stares, questions and sometimes looks of confusion from others.
We started off having to use a bike helmet as she was suffering hundreds of drop seizures a day during Covid and the services simply switched off.
She now has a ‘proper’ helmet that she wears all the time.
At first my heart hurt every time I glanced at her wearing it. Now it feels part of her, and something that is there to help and to protect her. A friendly adaptation. We were brutally reminded of this last week when we, due to complacency, went to the supermarket without it (we’d had an unprecedented run of a few weeks without a daytime seizure). She refused to sit in the Firefly trolley and then had a big tonic clonic, hitting her head on the stone floor.
We have always been adamant that we want the ‘best looking’ equipment possible. It is about dignity and having a right to express some style and personality where possible. It matters to me that my daughter’s helmet is colour we like and does not look grubby.
One brand of helmets simply make theirs in bright red and royal blue (both colours on one helmet). This makes me cross as I cannot imagine that many kids, or adults for that matter would choose this colour combination in clothing. It suggests the design is going for practicality and ‘bit of colour’ and that the makers have not consulted with people who need to use it.
It’s a good helmet in a soft fabric, but It feels like very little thought has been given to the fact that a child will need to wear the helmet day in day out.
Some children may love it or not care, others may be less keen.
The helmet my daughter has comes in three basic colours including black, so you can at least have an option. It’s still a very basic nod to style though. We have some cat motifs to sew on to her new one (which we have been waiting almost a year for) to customise it.
Professionals and designers must recognise the emotional impact that equipment can have on a child and family. I realise budgets play a part, but consultation with families and small colour adaptations for example, should not cost a great deal more.
It’s heartening to see the Firefly equipment in on-trend colours with clear thought having gone into the design (just look at the Upsee; I’d be going for the denim / rainbow combo). The difference this thought makes is far from just cosmetic, it has the power to shift emotions and ultimately make for a more contented family.
PS. Fancy designing an epilepsy helmet, Firefly?!