By: Vicki Parnell
Lost papers…missed meetings…kids showing up at school without the right supplies…
I have been “that parent,” and I often wonder what our lives looked like to the educators who worked with my family!
I’m the mother of two young people with multiple “invisible” disabilities, and in my consulting work I support parents of children with autism spectrum disorder (ASD). These experiences have given me insight into hidden stressors experienced by parents of “differently wired” children – stressors that can become a kind of “normal” for families like mine.
Putting out fires
Kids whose brains are wired differently often have very intense needs and behaviour. The normal work of parenting—getting everyone out the door in the morning, making sure homework is done, preparing healthy meals—becomes difficult and exhausting when your child is bringing an extra level of intensity to the daily routine.
Add to this the unique stress of being your child’s “case manager”: researching, selecting, hiring and scheduling therapy, communicating with your child’s teacher and school, making sure siblings get special time and attention…
We all do our best, but it’s usually impossible to get everything done and sometimes parents are left to prioritize whatever seems most urgent in the moment, hoping they will have time to catch up later. This can lead to a feeling of constant crisis, an ongoing source of stress overload that can affect parents’ mood, energy and tension levels.
Recognition and Awareness
There can be a big disconnect between what a clinician or educator recommends, and what parents are ready to agree to. This disconnect can be very stressful for parents, for a number of reasons.
Parents may have different and evolving levels of awareness about their child’s unique needs. Some parents may be quite aware that their child is not typically developing; these parents will pursue assessment and support proactively. However, others may not recognize that their child is different. I was like this myself at first. My children’s behaviours and characteristics came to seem “normal” to us. This doesn’t mean I was blind to their differences. My husband and I were both “quirky” kids, and we saw many of our own traits in our children. We didn’t recognize the need to seek professional support for our children until they were older and things got very hard at home.
All parents want their children to have every opportunity their peers have, and many parents of “differently wired” kids just want our children to be included, to be treated the same as their peers. Even after their child’s differences and unique needs are identified, and extra support is offered, a parent’s priority may be for the child to have as normal a life as possible. Many parents worry about the potential stigma and reduced opportunities that may come with labelling a child, so they might avoid pursuing assessment or diagnosis.