Joanna has a son with Down syndrome. She has worked full time in the past, and today she stays home with her two children.
“Both [arrangements] are equally draining,” she says. “At times I do miss the adult conversations and lunch hour with co-workers. [My son] has many medical issues, one including a [feeding tube], and we have been denied multiple times for any assistance. So until some of his medical issues get better with time, I count my blessings every day that I'm the one who is able to take care of him and my daughter.”
For parents who stay at home full time, it can be difficult not to resent the parent who heads to the office each day.
Jenn had a full-time career she traded for full-time motherhood. She also has a son with Down syndrome.
“I tell [my husband] all the time that his job is just as hard, but his day is broken up,” Jenn says. “He sees different people. [He] has alone time. [He] is guaranteed a shower every day. He has an hour of alone time for the commute and then gets to eat at least one meal — lunch — alone and while it's hot.”
Joanna adds, “Sometimes [my husband] complains about his commute from work and there are days I would welcome an hour of alone time even if it was stuck in traffic!”
For parents who continue to crave the fast pace of a career but also want time with their children, part-time work can be the solution.
“I have worked part-time since having kids,” says Ashley, a nurse whose son has Down syndrome. “I took a leave of absence for nine months after I had Connor, and then gradually returned back to part-time.” She credits “an amazing neurosurgery group that has been so flexible and wonderful with me since having kids” for helping her “feel like I have the best of both worlds.”
When family and friends don’t understand the scheduling demands that come with parenting a child with special needs, frustration levels can rise.
Many points raised by these moms of children with special needs likely resonate with many stay-at-home moms of children with no disability. So, what’s different about having a child with special needs?
“Adding special needs to the mix adds a level of frustration I never thought I'd ever have to deal with,” Jenn says.
“The biggest misconception is that my day revolves around this sickly kid who has the awful disease and his therapies. I explain it to everyone like this, ‘You take your kids to sports and activities. So do I. I just have extra visitors and extra activities.’“
“I just think others have no clue what is involved in caring for a child with special needs, whether you work or stay at home,” Ashley says. “Most do not realize all the therapy that is involved daily/weekly, the meetings, evaluations, doctors’ appointments, juggling work/school schedules, dealing with your other children and their schedules, your husband’s schedule, finding support and trying to still function in society as you did before, but truly will never be the same again!“
“I have learned situations I can and cannot function in, and have started being more honest about things I can and cannot do without the guilt or perfection I use to try to carry. Unfortunately this may include losing or gaining a few people in your life.”
Stay-at-home parents of children with special needs have quite a bit in common with stay-at-home parents of typical children. As Jenn points out, “My life also doesn't revolve [around my son] and his specialness. It revolves around trying to find balance between being a mom, wife and woman.”
All these demands come with great rewards and tradeoffs for the working spouse. “[My husband] doesn't get to see the daily triumphs that either kid makes,” Jenn says. “Like at gymnastics or at physical therapy. He's not as involved as I am with the daily decisions regarding our lives.”
As for me, I’m thankful my husband supports this new work/family arrangement. It may not be the ideal situation in 10 years, but for now, everyone is happy, healthy and as stress-free as any family can be.
And that feels pretty special.
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