Many working moms plan on the usual steps of maternity leave and a return to work after their baby is born. Post-diagnosis, some of them have worries specifically related to how a Down syndrome diagnosis will impact these plans. However, moms in the Down syndrome community work at a number of jobs, including health professionals, writers, entrepreneurs, lawyers, educators, non-profit leaders, and so much more. Some moms even find that the birth of a baby with Down syndrome/Trisomy 21 may lead them down professional paths that they never before imagined, particularly in the fields of healthcare, education, non-profit, etc. Sometimes a little creativity and additional instructions are needed when setting up childcare, but many moms find that they are able to find fulfillment in parenting a child with Down syndrome while also working full-time or part-time.
See Also: Adjusting to a Down Syndrome Diagnosis chapter in our book, “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome.”
In-and-Out-of-the-Box Tips for Raising a Special Needs Child (or Any Child) by Amy Silverman
Moms of kids with special needs weigh work vs. staying home by Maureen Wallace
Trial Run by Kathryn Lang
Celebrity Moms of Kids With Down Syndrome by Ellen Stumbo
Experienced moms share their challenges, successes, or plan changes concerning their work and child care.
From Gary, talking about working since her daughter was born and using nannies to help with childcare:
I have worked the entire time. 14 of those years I was in corporate banking and traveled every other week, sometimes for days at a time. Over that time we had four nannies, and they all worked out great. They took care of and loved all three kids. I scheduled any appointments Alex had on days I could work from home so I could stay on top of her progress.
From Meriah, discussing how she’s continued to work as a consultant but gave up full-time work after the birth of her children:
I have never quit working. I just gave up my full time job, status, and benefits. Besides being at home full time with these guys, I’ve worked continuously as a career counselor (private and with the state department of voc rehab), resume writer, deaf editor, editor, writer and WordPress website developer.
From Sandra, sharing how she finished her education after the birth of her son to be able to work as a teacher and shared responsibilities with her husband:
I was in the middle of my BA when Sean was born — I thought I could stay home with him and go to night school. He was 4 months old, and we were using credit cards for groceries so I went back to work part time. I graduated the summer before he went to Regular Ed kindergarten. I’ve been working full time ever since — and more than 40 hours a week most weeks. Took me 7 years to write “Who’s the Slow Learner?” And if I had not had 5 weeks off for a foot surgery I wouldn’t have finished it! I have a true partner in my husband and we have a housekeeper so we still have time for fun and make vacations a priority.
From Tamara, describing how she made daycare arrangements when her son was little and as he grew older:
I have a thirteen-year-old son with Down syndrome and went back to work when he was about two months old. I used daycares in people’s homes for the first several years. It worked out well for me. I was able to find daycare providers who were willing to have birth-to-three providers come to their homes. I also was able to have some therapies in the evenings and had good communication with the providers that I didn’t see very often. If I had it to do over again, I would probably try to find a day care center that he could attend when he was older. At this point, we have high school or college students come to our house, which he absolutely loves. Again, it’s working out well; but if I had it to do over again, it would be nice to have a good relationship with a daycare, where he could have continued going when he was older. Work and family is always a balancing act. But, I really can’t say that the balance was any more difficult than with his older brothers. I am lucky to have plenty of vacation days to take care of any doctor’s appointments; and he didn’t have any real major health issues. I do understand the concern of having a child with special needs and trying to continue working, but it wasn’t the issue I thought it might be. One friend of mine, a single mom with a fourteen-year-old daughter, has a great relationship with the local YMCA – they’re not all the same, though. The daughter is now a counselor in training for the summer day camps. They’re building a great inclusive program because of this child. It’s quite a success story.
From Anne, explaining how her arrangements with a nanny were the same whether she had a child with Down syndrome or not:
My son with Down syndrome is 6 months old. I went back to work at 6 weeks. We had our parents care for him until he was 4 months old, when his nanny started taking care of him. We had always planned to have a nanny, and our surprise Down syndrome diagnosis did not change that. We also always planned for him to go to some type of preschool at about age 3, so he can learn to play and socialize with other kids. I don’t think his diagnosis will change that either. My husband and I both work full-time, but our jobs are not those that have strict hours. We are both able to leave early/come in late to attend his therapies (4 per month right now, so not too excessive) and doctor visits. Overall, he is in excellent health, so while there may still be more doctor visits than “average,” it is manageable. We are lucky for that, and also that we both have good jobs with some degree of flexibility. And our nanny is just fantastic. I feel completely comfortable leaving Will with her every morning (although I do wish I could not work and stay home with him instead). Overall, at this point I don’t believe that it is any different to be a working mom with a baby with Down syndrome than it would if he were typical.
From Caroline, talking about how she coordinated family care and family leave to create a work schedule:
My son just turned one! I had to go back to work when he was 3 months old. Fortunately my mom was here, and she took care of him for another month, then my mother-in-law came and help us for 3 additional months! It was a little crazy but I’m grateful because he didn’t started at daycare until he was 7 months old! When I came back to work I asked for a FMLA leave to be able to work less hours a week but still keep my full time benefits, and it works great because I use those hours to get to therapies, appointments, and so forth. I also have the possibility of working Saturdays in case I need an extra day off during the week. It’s been hard to adjust to a crazy schedule, but since this is my first child, I don’t know another way of doing things. I really don’t have much time anymore for any other activities but I think is worth it!
From Susan, describing how she manages her part-time work schedule and child care with a son who has more medically intensive needs:
My son, Alex, is 10 years old. He was born with significant medical problems. I stayed home with him for the first 9 months and then was able to find part time work two days a week. Until about age 2 he was able to attend a regular daycare program for the 2 days a week I worked. But as time went on and he didn’t progress with eating or walking, we knew he needed a different environment. He started attending a Medical Day Care program twice a week when he was 2 1/2. It was wonderful. They provided feeding therapy, OT, PT and Sign Language in house, and we had Early Intervention visit us at our house on the other 3 days. Alex aged out of Medical Day Care around age 5. Soon after he started attending a full day school program. This year I returned to work “full time” at 60% which is three full days a week. It’s feels like a lot, because Alex’s needs are so great and he misses alot of school due to illness, out of state doctor appointments, medical testing, and surgeries. He now has a feeding tube and full time nursing care at home. He has a waiver for Medicaid due to his medical conditions and level of disability, and the waiver pays for nursing, pull ups, and all medical expenses.
From Kathleen, talking about how her daughter was born early and how she went back to work as a full-time teacher:
My daughter is 4. She was born 8 weeks before her due date. I went back to work when she was 3.5 months old (6 weeks developmentally). She went to daycare at the school she goes to now. We did all the therapies at home around either my or my husband’s work schedule. I am a teacher, so it is nice to be home together in the summers.
From Patricia, explaining the benefits of childcare and quality time with her children as a teacher:
I am a working mom … I am a teacher. I returned to work when my daughter was about 4 months old. Goodness it was hard. My children (2) go to a babysitter’s house … like an in home daycare but more like going to Grandma’s house as there are usually only 3-4 kids. I felt good about where I was sending her, and it made it a little easier. Therapies? We do them when I get home from work. I was really nervous about scheduling therapies, but although the days are busy — it works out. Do I think I could do more with my daughter if I were home — probably, but having said that, she has a wonderful experience interacting with other children at the babysitter’s house. She learns from them and is really happy there. I cherish the weekends! I cherish the evenings even though they are full of cooking, therapy, packing lunches, baths etc. My husband and I have no help from anyone. We do it all ourselves. If I can encourage you not to take time worrying about it now … things will fall into place. I know it is hard, but things do fall into place. Yes, I’ve had to call out more often this year — but heck, all kids make you do that! Sick days become about our kids — all the kids, Down syndrome or not. Hang in there gals … those of us who have walked the road before you have turned out a-okay … you will too! Be encouraged!
From Lucy’s Mom, talking about her difficult decision to stop working and how she returned to work 3 years later with no regrets:
I had actually started a new job about six weeks before Lucy’s birth (and diagnosis). I spent my entire maternity leave trying to figure out what to do. I had just finished my masters degree, and finally felt like I was embarking on my career. At the same time, I wanted to give my daughter every opportunity to grow and flourish. Our only childcare option was a daycare center. We did not have any family available to provide full-time care for her. I had serious concerns about not being completely connected to her therapy and therapists. Ultimately, I decided to resign my position. It was an incredibly difficult decision, and it took a long time for my husband and I to be on the same page about it. I can honestly say that our marriage has never been the same! I made the decision to leave work and be fully available for EI for the three years she would be in it. I was fortunate enough to find part time work during those three years, which kept us afloat financially. I was able to make my own schedule around her various therapies. Lucy began preschool in July which was my cue to return to full time work. It took me 10 months to find a job, thus giving me a lot of time to reflect on my initial decision to leave full time employment. I watch her, though, and she is so amazing … I have no regrets. I figure I probably “lost” about $150,000 in salary, but what I gained is immeasurable. Would she be doing this well if I had returned to work? Maybe. It’s impossible to tell, but I am glad that we were able to provide this foundation for her.
From Shelley, describing the benefits of having a flexible employer, a flexible schedule, and a determination to make it work:
I took the full year maternity leave plus a little extra – so the twins (one has DS) were 15 months when I returned to work. (I hated leaving Han in care before she could even walk – but it was a ‘mainstream centre’ and they were great with her). My work were fantastic! I am a teacher and I simply asked to return 3 days a week as I still wanted to be there for Hannah’s early intervention and various other appointments. It hasn’t always been easy for my employer – and once the twins started school, I regularly get asked whether I can go full time – however my work were/are happy to make my 4 days in 3 part of my permanent contract at the start of this year. They are great about needing time off for appointments – especially emergencies – and so is my husbands employer – in fact last year when our inlaws were out of state for 6 weeks he left work early every Friday to pick them up – with no hassle from his bosses. I must say that I would investigate carers discrimination should the need arise but I have found that so long as I go out of my way to make it work as best I can, so will my bosses…
From Laima, discussing how she shifted her full-time schedule to work from home part of the time and the great daycare she found for her daughter:
We both work out of necessity, so staying home or part time (which would have been awesome) is not an option for me. My job, however, is very flexible – I’m a database administrator, so I basically just need network access to do my job. It means I bring it home more than I should, but it also gives me that flexibility. Delia goes to a daycare with typical children. I picked a small center daycare, because I wanted her to have consistency in the people looking after her (large centers tend to move kids/teachers around too much), and because it lowers the germ pool. Delia tends to get really gunked up when she has a cold, so the less kids around the better. Her therapists come to her school, which works out really well. We try to schedule the therapies around my lunch so I can get to them, but it’s not always possible. I try to catch the last 15 minutes of OT and PT at least once a week. We’ve gone through a lot this past year. Next week Delia moves up to the 1 year old room – her teacher cried when we talked about that. They love Delia there – I’m glad we’ve got her where she is. I feel like I’m getting a lot of help.
From Melissa, describing how she returned to work part-time to maintain her sanity and found different daycare situations at different stages both before and after open heart surgery:
I work, and would not have my sanity if I stayed home full time with Claire. I really enjoy my job, and enjoy talking to adults during the day! I did switch to part time after she was born, but I’d made the decision to do that before we knew that she would have Down syndrome. I work 3 days a week, and my schedule is flexible, which is very helpful for therapy appointments. For Claire’s first year she was in an in-home daycare with just one other baby. It was the perfect situation. Claire had open heart surgery at 5 months, and we knew we had to keep her healthy before that. Just having one other baby around her gave us a little more control of the germs. Just last week I switched Claire to a daycare center. She is in the infant room as she’s not walking yet, but so far, I love the new set up. There are babies that are crawling, just like she is, and babies that are walking, which I see as a motivator. Neither of our daycare situations had any experience with Down syndrome, but both were/are very open to accomadations if we needed them, which for the most part we haven’t.
From Eileen, talking about how she coordinates her work schedule and activities for her children by employing a nanny:
We had a prenatal Down syndrome diagnosis as I was starting a new position which is very intense. We had time to figure things out before we had Ellie (who is now almost three), but we have had few issues with a dual career situation. I have some flexibility in my schedule, but still put in a very full week. We have a full time nanny who manages Ellie’s therapy schedule and other early intervention. We could not make daycare work with our first child, so we did not consider it for our second. I treat Ellie’s therapy like any other activity she attends, music class, gymnastics, etc. I attend when it works or I am requested, and let it go the rest of the time. The nanny updates me on what we should be doing and I touch base with the therapists from time to time. We do attend all medical visits, but try to schedule them so they work with our schedules. Ellie is doing great and will start preschool next week. I have always thought that taking time off from work to stay home with the kids sounds lovely, but we never found it necessary with either of our kids.