When you have a child that has a disability it is easy to not hold them accountable. They struggle so hard to do the smallest things, that they get the biggest breaks. Bridget frequently gets away with things her sister would not. For example at a restaurant Bridget will be seen watching Sofia on my phone. Her sister? Never in a million years would she be allowed to use a device at the dinner table.
Her sister must do her homework every night. We excuse Bridget because after a long day at school followed by therapy we feel she deserves a break. Her reading work goes undone, her sister spends 2 plus hours on her own homework. Same thing for chores. At eight her sister was expected to put her own clothes away, load the dishwasher and behave appropriately in the grocery store.
Needless to say, I have unintentionally held Bridget to a different standard.
So much for inclusion! Here I am wanting the school and society to include Bridget and treat her as a valuable person in the community. Yet at home I’m letting her be a slacker!
Sadly, it is much easier to do things for Bridget rather than to allow her to struggle on her own. As with much in her life, easier doesn’t always mean the right course. I also acknowledge that it is not Bridget looking for the easy way out.
A lot of the time it’s us.
It’s easier to pick her up, rather than wait for her to enter the car under her own speed.
It’s easier to give her to give her another fig newton, rather than deal with her meltdown.
It’s easier to dress her, rather than take the half hour it would take to dress herself.
I was talking to a friend recently who like me has an older child and a child with PACS1. We both had an epiphany about our PACS1 children and how we treated them differently than their siblings. Sadly, we did not come upon this notion on our own. It took the sibling to remind us that we were holding them to a higher standard than their younger sibling with PACS1. The siblings told us held us to the fire. They reminded us that we wanted our children to be treated equally, yet we were not practicing what we preached. Of course the two children will be treated differently, but they still have to be held accountable.
We have to remember that yes, she is cute but she also has to be held to a standard.
Now we just have to find that standard.