This is the season when we think about the year we just completed, what was done, what goals were accomplished (or ignored), major life events and other milestones. We hear of others’ adventures through annual Christmas cards or social media updates with pictures of smiling faces in graduation gowns, wedding dresses, familiar scenery or landmarks. They arrive in the mailbox or Facebook feed every day full of celebration and optimism.
As the parent of a young adult with disabilities, milestones may look a little different. He hasn’t met the typical milestones at a time when we were excited to share the news (finally independent in toileting at the age of 8-9, dressed himself, still can’t tie his shoes). Language came late and slowly, milestones that parents anticipate as kids grow may or may not ever happen.
This year we’d be excited to report that he tried and liked some new foods.
Now he wants to share my mole poblano from our favorite Mexican restaurant. He read a poem in front of a big group of people at his sister’s wedding. He transitioned to a new doctor after his pediatric endocrinologist of 18 years retired (harder for ME than him). The biggest and most surprising one was that he went zip lining on our recent vacation! We were proud and excited that not only did he willingly do it, he seemed to really like it!
I am fortunate to have many friends and family with whom I can share these little victories, who appreciate that “baby steps” are sometimes all we get and that we should celebrate whenever and whatever we can. If you got good news from a blood test, celebrate! If your 8 year old just said his first word, time for a special treat! If your child completed a treatment, break out the confetti! If your adult child was able to prepare a meal on her own for the first time, share that all over Instagram and Facebook! Sharing our experiences and our children’s accomplishments help us connect with others and help others understand some of the challenges we face. Ours may not always seem like milestones (maybe inchstones or yardstones) but they are moving our children and families forward and that is reason to celebrate.
Joanna Jaeger is the mother of two young adults, one with autism, both with Type 1 diabetes. All along her journey, Joanna has found ways to connect with other families both seeking and providing support. She has been a long-time volunteer with Parents Helping Parents in Santa Clara, CA (www.php.org) providing help to families of children with a wide range of special needs as a mentor parent, advocate, fundraiser and Board member. She is passionate about food, travel, and baseball.