Many expectant moms who are ready to deliver appreciate some “been there done that” practical advice on the first year of a child’s life. Popular blogger and BabyCenter “Down Syndrome Pregnancy” co-group owner, Missy Skavlem, also shares an authentic story of “The First Year With Violette: What worked, what I wish I had done differently.” Missy talks about what she did with her daughter Violette in the first year, a wonderful read for expectant moms to tuck away for later. She talks about attitude, developmental charts, signing, tummy time, and much more.
See also: Adjusting to a Down Syndrome Diagnosis chapter in our book, “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome.”
Another wonderful resource where experienced parents share their perspectives looking back is Kathryn Soper’s compilation, “What Parent’s Wish They’d Known.”
Reflections from other experienced parents about the practical lessons they have learned during the first year — including things they did worth sharing, regrets and missteps, and things they wish they had known.
From Amy, describing the full spectrum of her first year with her daughter, Abigail, and learning to develop realistic expectations:
Our first year with Abigail was hectic, full of specialist appointments, therapy, conventions etc. We wanted to know as much as humanly possible, not only about Down syndrome but about best practices for early intervention etc. I felt like I had a ticking timebomb in front of me, and that I had somehow failed as a mom if Abigail didn’t meet developmental milestones on or close to target. I looked at Early Intervention (EI) as a way to “keep her on target” instead of what it is really meant to be – exercises and information to help your child develop skills as building blocks for new skills. Having more EI therapy sessions per week, I thought at the time, would help her not “fall behind,” and I was desperate for Abigail to be that “really high-functioning kid with DS.” She helped us along with this fallacy of mine by meeting the first several developmental milestones like a champ – she could grab a toy by 2 months, rolled over one way by 5 months, rolled over both ways by 7 months, and sat at 9 months. Then I put the whopper on my plate – she needs to crawl by 12 months. I pushed the PT, who kept telling me that I was worrying about this too much, and that if her little joints and muscles weren’t ready to work together like that yet, there wasn’t much she could do except teach muscle memory.
Abigail crawled at 12 months, 1 week. It is that last week that I look upon now and laugh at – I feel like it was her way of telling me to relax, that she WOULD do all the things that we want her to be able to do, but that she was going to do them when she was ready, and not a moment before. I made a “pact” with myself the day she crawled – I would not put so much stock in timeframes and averages, and I would take every milestone as it came, when it came.
Now, at age 7, Abigail runs, jumps, gallops, talks, reads, counts, dances, plays pretend, and laughs at jokes. Did she do all these things “on target,” either on a typical scale or on the Down syndrome adjusted scale? Most of them, I guess, but not all. They timing just isn’t important to me anymore. She is a wonder to us, she is perfect, no matter what skills she’s learned and which ones are still in her future.
From Christine, talking about how she wishes she hadn’t worried so much about meeting milestones:
I wanted my girl to be that one really high-functioning kid with Down syndrome. Olivia is almost two, and I have no idea if she is or if she isn’t. She is good at some things and not at others — like all kids.
If I could redo the first year, I wouldn’t be so obsessed over those milestones. I would hold her more. I really don’t feel like I held her enough as a baby, and they do grow up! I would also have pushed harder for OT once a week. She was scoring pretty behind in her reaching skills, and I didn’t push for her to have OT until she was one year old. I would have started [oral motor] therapy sooner than I did. That’s probably about it.
From Catherine, talking about medical care during the first year:
Aside from following Down syndrome medical guidelines, the one thing I wish I would have done was gone to an ear nose and throat specialist (ENT)!
From Heather, describing some skills she wishes she would have focused on during the first year and the importance of community support and involvement:
I don’t have any regrets except that I wish I had paid more attention to building my daughter’s core strength. It affects so much! I recommend that all moms take their kids to the typically developing kid things like Gymboree class, etc. I belonged to this awesome playgroup sponsored by several different social service agencies in my area. I wasn’t a client of the agencies but I was invited by a friend. Best decision I ever made! I met women from all walks of life, cultures, socio-economic backgrounds. I affirmed their parenting and their children, and they affirmed mine. I learned that I am more alike other moms than I am different. What an important lesson to learn early on in the journey.
From Stephanie, describing what she learned from having her son with Down syndrome as her first child:
I really enjoyed working with our early intervention specialist. At the time, I couldn’t imagine how other people raised children without a therapist guiding them along the way. We played so many games: doing sit ups and push ups on the yoga balls, making texture books, smelling spices, playing in syrup and cheerios, and scooting him in a bucket around the house to teach him balance. The therapy exercises were fun for all of us. I’m also really glad that we just kept doing all the ordinary things: we drove and flew from Utah to California and Idaho to visit family; my husband and I alternated with sharing child care responsibilities while both working; we went out to eat with friends; we took Andy to the neighborhood play groups; and my husband tickled him mercilessly. I’m also really glad we had lots of family support all around us, and my husband’s little sister even came to live with us.
On the other hand, I wish I hadn’t gotten so depressed in the beginning — though I think that’s a natural part of the process, so I don’t really know if I’d want to take it away. Mostly, I wish I hadn’t stressed about breastfeeding to the point that I had a breakdown about it and stopped. I wish I would have relaxed and just nursed as much as we could and then supplemented with a bottle as needed.
Overall though, it has been a wonderful journey, and I wouldn’t trade it for anything.