Submitted by Maggie
I love Facebook. It lets me catch up with old friends, share news, and learn more about the world - even fake news. But Facebook becomes the enemy when I read about the accomplishments of my friends’ children. Though I delight in their news and smile at their many accomplishments, I feel envy and a touch of exasperation - this could have been my child.
Our son Daniel is on the autism spectrum. At age two he was diagnosed for PDD/autism and began a long road of intensive therapy and development. This forced a decision on my husband and me; who would stay at home to become his full time caregiver, therapy administrator, and advocate? My husband, Dave, volunteered to take on that role. It's a role that all the training in the world never prepares you for; staying home with a special needs child. I continued working, and thankfully I was capable of taking on the role of breadwinner.
Daniel is now 21 years old and has very limited communication skills. When he is able to connect daily events and report back on a day’s activities, I want to post about it and sing his praises. But I fear that his stories about stocking candies at Walgreens and spotting rainbows, which are delivered in one-two word sentences, might sound trivial and banal to the average Facebook friend even though we know the effort required for him might be equivalent to another child making the honor roll. When he's able to make a connection and tell us about it, it brings a level of joy I wish I could share with others, but I get that most wouldn't understand or appreciate it.
There is a poem that I keep close and read often. It’s called Welcome to Holland, and it speaks about raising a special needs child and the different experiences you discover along the way. The experiences are different than what you probably expected, but not at all bad.
A mother once told me that the secret to parenting is to be long on patience while maintaining a sense of humor. Special needs parents also need to persevere in a way that most parents can't understand. This means looking for the "honor roll accomplishment" in everything that their special needs child does. It may not be Facebook material, but it certainly is wonderful for me,