The Working Special Needs Mom… — 5 Minutes for Special Needs

The Working Special Needs Mom…

by Heather P


So, how does one do it? Work and be Mom of the Medically Fragile?

I need to know.

I have a job interview. For a real, big girl job. In my field. At a large hospital. In a position that I, a few years ago, could have only dreamed about.

I don’t really want to work full time. But, the bills accrued by having a SN kid…


(I really can’t expect my husband to carry all that on himself)


I’m torn in so many ways. On one hand, I want to work and make the world of nursing a better place. I want patients to feel loved and be treated holistically. Yet I also want to make sure that my family has what they need. I have babysitting lined up in the form of my gal pal.That’s a God-send.

I’m terrified.


So tell me…do you work? How does it work for you? Do you carry much guilt? How do you do it?


I’m so torn…

Email Author    |    Website About Heather P

Heather is a mom of two, wife, and nurse educator doing what she can to save the day! She lives in Orlando where she is routinely spotted driving while singing ABBA--all on a mission to advocate and educate!

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1 Heather Earley February 24, 2012 at 1:16 pm

Hi Heather. Love your name. ;).

I’m going to be honest. It’s not easy. Yet, from what I have learned – I go back to the old saying “you need to love yourself and take care of yourself before you can take care of anyone else”. If working gives you that sense of stability, confidence, and drive to succeed for YOU – then you should definitely consider it. Your child (or children) knows your love and will appreciate the time they have with you even more. Are there times where I’m exhausted and have less patience? Absolutely – I won’t hide that fact. I get to work in the RARE Disease world – so, I am immersed with disease all day long. Which is my second love ;). It sounds like nursing is your “second love” and by all means – patients need people like you!! You are passionate about others which makes you a better caregiver! You can relate to others due to your circumstances too! The hard part? Organizing time for everyone. If you figure that part out in the beginning – you will be okay.
I wish the best for you.
And don’t forget to spend time with your hubby – he needs you too ;).
Ahhh…the life of a woman ;).
Lot’s of hugs.

2 Heather P February 26, 2012 at 10:11 am

HI Heather (smooch)! You know…they don’t put this stuff in the Woman’s Manual to Life do they? 😉 Thanks for the advice…I’ll heed it carefully!

3 Jo February 24, 2012 at 1:32 pm

I have no real words of wisdom as I am not working right now. Not through choice but circumstances when the issues with my youngest reared their head.
I just wanted to send you lots of positive vibes in making the decision. You will make the right one I know that.
If you have the right childcare in place then that would be a huge factor for me.
The more into this I go the more I truly believe things happen for a reason.
I wish you all the best for the interview and finding the next path for you all.

4 Heather P February 26, 2012 at 10:11 am

Thanks Jo…I want to feel at peace with my decision. And right now I’m still in turmoil. Sigh.

5 Deborah February 24, 2012 at 1:53 pm

I am a single parent to 5 children, three of whom still live at home. Of those 3, 2 have significant medical needs. My daughter, now 17 years old, is deafblind, has seizure disorder, and a G-tube. My son, also 17, has spina bifida, advanced kidney disease, and is Deaf.

I have always worked full time.

I don’t know how to tell you that I have made it work. Sometimes it is easier than others. Having dependable, good child/attendant care is key as is an understanding employer. Getting a good school program in place also helps tremendously during the school year because I can go to work and really concentrate on work. For those many, many times that I have to take off time from work, I have negotiated with my employer to allow me to make up the time working from home at odd hours. That works for me because I am a computer engineer – probably not so easy for you.

Another key for me is being super super organized, some might even call it OCD. But, when the home runs smoothly, then other things can run smoothly. I have had to organize doctor appointments for the same day if possible. I found a pediatrician who had office hours on the weekend. etc. etc.

It is definitely not easy to work full time when you are a parent of child/ren with special medical needs, and sometimes the guilt does creep in. But for me, it has seemed to make me treasure the moments together even more.

6 Heather P February 26, 2012 at 10:13 am

Hi Deborah! I do feel the guilt…but you’re right. The organization has to be the key. My child is OCD himself, so our life is already quite organized. I’m nervous regarding childcare and not being here, but…sigh…there’s no real choice but to go to work. I’m going to keep your comments in my heart (for the days when I need reassurance). 🙂

7 kadiera February 24, 2012 at 2:31 pm

Not working at the moment, though that is changing again in a couple of weeks.

Child care was what drove me to take leave this winter; our resolution to that problem for L is…unfortunate…in that events transpired that mean she now qualifies for nursing, but that does solve the problem.

Our big issue outside of that has always been how to manage all the appointments. In home therapy was nice, but when A graduated to outpatient, then someone had to take him (and his nurse, who wasn’t allowed to transport him). L will have in-home again. My husband and I took turns taking vacation days to cover doctors visits, and used basically all our vacation 2 years running.

8 Heather P February 26, 2012 at 10:15 am

Hi Friend…
That’s what I’m nervous about too. I’m going to be very up front about all that in the interview, so if they don’t want me, that’s on them. Child care scares the jeebus out of me. This whole thing is wild. I don’t like feeling like this…sort of backed in to a corner. Sigh. Smooch…I miss ya. We’ll catch up soon.

9 Laurie Wallin February 24, 2012 at 2:58 pm

I own my own business so my work fits around the kids and their needs (most of the time!) It brings in some money, but more importantly, it brings in a little sanity and balance for me. Could you do per diem? I’d totally recommend having other roles in life…. 🙂

10 Heather P February 26, 2012 at 10:16 am

If I do per diem, then I will end up missing out on spending time with my entire family together. I’m really torn about this. Sigh.

11 Janet February 24, 2012 at 9:32 pm

I work. But as a single mom I really don’t have a choice. I built my family through adoption, so I knew upfront that child care would be a given. I don’t feel guilty.

It helps that I have a very understanding boss. It also helps that I’m an old broad mom so I had been working for 20+ years before children.

These days I do it day-by-day. Since January 1st I have had to take over 10 days off work due to sickness (2 days for me, the rest for kids). Then there are days like today where I do it hour-by-hour. My 9-year-old (ASD, no-verbal) is home sick and has been using the hitting method of communication.

I did drop to part-time (7 hrs per day instead of 8) It is amazing how that helps. It also allows me to take sick leave and vacation by the 1/10 of the hour. We also do lots of convenience foods; eat out way more than we should. The house is a mess due to ASD related stuff and just no-time-to-clean mess.

There are times when life gets crazy with after school therapy twice a week and after school activities. I love my kids and wouldn’t change a thing. My girls are now 11 and 13 and I can leave them with their brother for short periods of time.

Speaking of which, Luke is now asleep and I’m going to sneak out to get a McDonald’s hot chocolate 🙂

12 Janet February 24, 2012 at 9:33 pm

OK – the 8 is really eight!

13 Heather P February 26, 2012 at 10:18 am

I forsee a lot of take out in our future as well. I’m hoping if I am really honest and open in the interview, I can reap the rewards of an understanding boss.

As I sit here eating my Burger King breakfast sandwich… (hug)

14 AmyW February 26, 2012 at 4:21 pm

Funny to read this. I am endeavoring on my first full time job in 5 years starting this thursday. I am nervous but I have made sure to have a good support at school and home. We have found a wonderful sitter for after school and grandparents are there for back-up. In the past I didn’t have this and the job didn’t work out. I did have to go back to part time. Oh and the being organized. So key. If you make sure that is all in place this should work. Although I will let you know for sure ina few weeks! LOL And I do have a boss who knows my situation and is very supportive!

15 Heather P February 28, 2012 at 11:55 am

PLEASE do keep me posted. I want to know! Good Luck!!! I hope it works out far better than you even imagined!

16 Florence February 26, 2012 at 8:57 pm

From my experience (I’ve always worked outside the home, my son started going to daycare at 4 mos. old), it is not easy. Add our special needs kids into the mix (and in my case, solo parenting as well) and it goes to a totally different level. But then, parenting very rarely is.

There are good days and bad days. Days that my house is neat and days that I can’t even find the floor. We eat at McDonald’s more times than I would like but then, even when I cook, the boy’s sensory processing disorder kicks in so he wouldn’t touch what I made.

Do what you think is best for you and your family. Then when you second guess yourself, repeat this: “I did my best with what I knew at that time”.

17 Heather P February 28, 2012 at 11:54 am

I’m totally printing that off and sticking it in my purse for a gentle reminder. (hug)

18 Cheryl March 7, 2012 at 12:42 pm

Sorry I am late to the rodeo, but I am a working mom of a medically fragile/special needs child. I have had to work since the beginning, since my ins. is the one that covers everyone. I definitely not an expert, not a supermom/ wonderworker/ perfectwife, but doing my best at all of them. I have to cosign on the others who said to plan everything. I got myself a nifty planner (not digital, I need to write) for my birthday, and I plan every single thing. Down to when I can paint my own nails. Which brings me to– focus on the job at hand. When I am at work, I focus on my work. Period. I run errands, make appts., check on kids, pay bills at lunch, but I really try to focus on whatever thing I am at. My schedule book looks crazy to the outside world (maybe a little OCD) – I schedule 20 minutes a day to read a “for fun book”, as opposed to the 10 minutes for a “will help with the kids” book. I do weekly cooking on Sundays, with crockpots, and easy to assemble meals (can’t afford takeout that often). I clean on Friday nights after I put the girls to bed.

My husband does dr. appts since he works nights, I do afternoon therapies and such. I can’t think of anything else to add, other than make sure you give yourself a chance to rest, look at something pretty every day, and remember that you are doing your best.

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