Written for Firefly Friends
Although Isla’s sisters have completely different personalities there has been many similarities in their journey from babies to young adults.
It started with a fairly predictable love of everything pink which progressed to purple and then light blue. They tried every activity under the sun and we watched many self choreographed shows. They went through the pretty dress phase, moved on to shorts and t-shirts followed by short skirts, small tops and Converse. Moving into the pre-teens and teenage years the awareness to fit in shaped fashions, hair styles and behaviour. Friends, Snapchat and Instagram started being all important and we quickly became the bank, taxi driver and maid. The wearing of crop tops progressing to their first bra, shaving legs and wearing mascara for the first time were all a right of passage into those teenage years for my older girls.
However with our 10 year old daughter Isla we are sailing uncharted waters. She has a rare syndrome causing autism, epilepsy and intellectual disability. Instead of following in her sisters’ footsteps who adapted their social behaviour to match their changing bodies, she remains stuck in those early years. She still enjoys playing with Thomas the Tank Engine, Paw Patrol, Shopkins and babies. Her best day out would be out shopping for toys or a trip to the library. She has friends her own age but enjoys the company of those older than her where she doesn’t have to worry about social complexities.
Whether I like it or not Isla is going to experience puberty at the same age as her peers. This is an awkward time for most parents but we are facing additional challenges with Isla such as:-
- Not having the cognitive ability to understand what puberty is
- Sensory issues. Even wearing a crop top is highly uncomfortable for her
- Unable to carry out self care tasks on her own
- Keeping her safe from sexual predators
- Learning what behaviour is acceptable – what should be done in private versus public. We are still working on the burping and farting!!!!
- Managing moodiness, anxiety and possible seizure increase
There are plenty of resources and information that can help us. Putting them in practice though takes a lot of work and energy. Some of the suggestions I have found are:-
- Using the correct words for body parts and bodily functions. Start talking about this early (tick)
- Build up to a bra. Start with a singlet or crop top (we are still at the singlet stage)
- Keep up physical activity (we try our best)
- Teaching hygiene (a work in progress)
- Explain menstruation long before it begins, prepare a kit and practice with pads (deep breaths!!!)
- Wash hair more often (always do regularly against her protests but she can’t do this on her own – must encourage this)
- Prevent body odour by wearing deodorant (think she’ll like doing this)
- If wants to wear makeup start off subtle (not going to happen – won’t even allow her nails painted)
- Having social stories (a visual picture book) that she can read over and over to help her learn new skills and rules (on my to do list)
I am sure with a bit of planning and practice we’ll get through this stage like we have got through all the others so far.
Isla’s assistance dog Bo is going to be a great help to her while she navigates these teenage years. Not only as a companion but also alerting others to be patient while she’s learning to become more independent.
Seeking help from other parents who have been there will also be invaluable. I am lucky to have a great support network both online and in our community so we won’t be going through it alone.