My husband and I have been discussing how Max's DMD will impact us financially, and the state of oru finances in general, and we have considered my return to work outside the home at some point. Staying home with my children is very important to me (No judgement AT ALL on moms who work! This is just my personal preference and I never made a very impressive salary.), so I hope to stay home at least until Max is in preschool. For those moms of school-age boys, how much time a week do you spend at therapies, meeting with teachers, etc? How difficult is it to work when your son has Duchenne?

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How about working inside the home with a flexible job? I know those jobs are hard to find, but possible. I have been doing bookkeeping from home since Jared was ten months old and it allows me the flexibility of earning an income plus being available for Jared when I need to be. How about dog walker, babysitter, or anything else you love doing that you could make work. Just a thought.
Kari said:
How about working inside the home with a flexible job? I know those jobs are hard to find, but possible. I have been doing bookkeeping from home since Jared was ten months old and it allows me the flexibility of earning an income plus being available for Jared when I need to be. How about dog walker, babysitter, or anything else you love doing that you could make work. Just a thought.

I have considered keeping a few kiddos in my home, and that's something we may do at some point. Our ultimate goal is for my husband to take over at the small company where he works when his boss retires, then I can be the office manager with a flexible boss. :) We just can't be certain that will happen, so I'm working on plans B and C. That's great that you've found something you can do from home! I actually had a little home company, making fused glass jewelry, but it was a lot of work for a little $$.
We sold our home in the DC area and moved closer to family we know we can rely on. While this is not an option for all folks, more to the point of the move is so that my husband and I can continue working for awhile to put the money away for the harder days. Our son is 3.5, so these are the "easy" days - I say that with much hesitation. We both work full-time. In fact, it was my career that was beginning to take off and earn the big bucks just before we received the diagnosis. So, now I'm in a 180 degree approach. Hubby is working on career to be more fruitful in income, while I stepped back out of management so that I had the flexibility to be there for both our kids. We moved to a lower cost of living area and purchased a home at half the price of those in DC, while buying with accessibility in mind. Main-level living, level lot, open floor plan, reasonable adjustments to a resale that would not cost a lot of money to make it accessible (expanding doors, main level bathroom with shower, ramps from yard/garage to inside the home), and the ability to expand the circuit breaker to eventually handle home backup generators (check out HOA documents about structural accessibility accommodations to your homes). Not to scare you here because this is me preparing for the worst while knowing there are treatments coming to help our boys.

So how to answer your questions....

It is tough to keep up with the at home physical therapy. We are only able to get in the stretches once a day, so I make it a good session of about 20-30 minutes at bedtime, which includes massages of the legs, back and hands, plus forearms. As for meeting with teachers, doesn't matter if you have a kid with special needs or not because when both parents work then someone or both have to take off to meet with the teachers. And if you feel the teachers are not educated enough and you need help with educating them - that's what MDA is for. Only at your request, they will be happy to do an educational seminar for them.

How difficult is it to work... since I've always been a career woman in the DC area (too expensive to not have two incomes in the family there), it's definitely impacted my ability to concentrate on work, but this is always a challenge in my normal makeup. I love my "focus" pills for this ;-) Doctors appointments, coordinating disability benefits, MDA clinics, teacher meetings.... Always do yourself the favor of getting the Family Medical Leave Act protection. It requires 1 year minimum at one job, but totally worth it. It insures your job is protected for the ongoing care you need to provide your son.

My two cents: If staying at home is important to you (and I know it is to me), but you need to make money to either make ends meet and/or save for the tougher days ahead, then maybe a balance could be worked out. One person suggested working from home - good idea. Another idea is to work only when the kids are actually in school, something I'm planning to do in 2 years. I've heard some parents find jobs at the schools so they can be near by for assistance while still earning money. Don't forget that there are some decent paying retail stores with lots of flexibility in schedule shifts AND have great health insurance - Starbucks, grocery stores and places like Target. Some parents have tried to earn their Certified Nursing Assistance certification because they can be hired by their kids and paid to take care of them. I'm contemplating full blown nursing and specializing in the areas that would most impact our son.

I honestly find it a mental struggle to NOT be with my kids now that I have a new perspective on life after this hideous diagnosis. I want to fully enjoy my son with DMD, while he has a lot of mobility, but if I don't financially prepare for the large expenses too, then I feel like I would not be a good provider for him. It's a catch 22.

Good budget planning is key to this process. What is most important to you and then build your budget accordingly. My first year working on one now that we have to be very mindful. The biggest surprise I had was how hard it may be to buy a new/new-to-me car, EVEN when we reduced our mortgage significantly and live in lower cost of living area. We make good money, both cars are paid off and when we finally run one of our vehicles into the ground, a new car is going to financially hurt. I have no idea how we'll afford the vans with accessible accommodations, even if we reduce to one car. Again, I digress.... sorry =(

I hope this helped more then scared you.... It is what it is, and it is important to make good, common sense decisions that supports what we most treasure balanced with what is realistic. Sometimes they just don't always go hand in hand, but a compromise may be the answer.
When both of my children were born, I was still a full-time college student and had to be away from home only part of the day. I will never regret spending as much time with them at home as I could! And, I got to be home with them and earn two college degrees! So, I am all for you staying home as long as you can! With that said, I know how difficult it is financially and I started working full-time when Riley was uhh, about 2 years old. Either God was watching out for me, or I am just one of those people who luck-up into great jobs. I do have a degree in counseling and am planning on working out of my home in private practice in about a year. Currently, and for the past several years, I have worked primarily in non-profit; not only because I love helping people, but because these organizations are VERY family oriented. They have allowed me to take as much time off as needed and usually encourged me to put my family first. The down-fall is lack of benefits (so often I had leave with no pay) but it was worth it to me to choose companies that are sympathetic with working moms. (If you cannot work from home, you may want to consider work like case management. Usually, in these jobs you are allowed to set your own hours and use your home as a 'home-based office'. The work-load is pretty significant, but you can do paperwork when the kids are sleeping and see clients when they are at school during the day. I did this for a while and it was great. I could schedule my client meetings around school activities etc.) I work now for the state Office of Mental Health. My job is considered temporary which is a great option because they are less strict with temporary employees about leave time (and I do get leave time benefits).

So, I guess what I'm saying is that there are options for working outside of the home that still provide flexibility; you just need to look for them. I never miss a field-trip, school function, or meeting with teachers. I do ususally try to schedule doctor visits and other 'errands' on the same day so that we only miss one full day of work and school, but NOT being behind a desk allows me to stop by the post office or run to wal-mart etc. during the day. Riley is only 6 now, so I know the time and care he will need will change as he gets older. I am trying now to plan my career around that which is why I am planning on starting my own practice.

I completely understand how you feel about being home and couldn't agree more! If you do have to go back to work, make sure it is a company that is understanding. I am always VERY honest to potential employers. Although it is a big interview 'no-no' I am upfront about how important my family life is. I have lost out on great jobs because of this, but never regreted it, because I know it wasn't for me and in the end, my kids, hubby, and I win.
I was working fulltime in IT management field prior to quitting my job in March 07. When we got the news of Duchnne, my company was very very accommodating and allowed me to work form home 3 days and we managed like that for about 6 months. What I found difficult was more of my own emotional makeup in dealing with the usual office 'politics' . I think spending time with therapies and school meetings etc is manageable. I am still not working and love to stay home and enjoy spending time with my son. The down side is the financial aspect. If I work, I can contribute more towards the research, make more plans for vacations etc. In my quest to find a solution, I have started an IT staffing and placement company just this month. I am hoping it picks up - I will be able to do more towards the cure for Duchnne. If not, I would have to seriously consider going back to work.
I'm a now stay-at-home mom with 4 kids. I was a teacher BC (Before Children). Love staying at home. One way I help our family "make money" is by using coupons. I know that this may seem archaic, but I save a ton of money this way. How do I get coupons? I buy 4-5 papers every Sunday. Then, I check various websites that have already done all the compiling of the deals. I get stuff like toothpaste, toothbrushes, soap, shampoo, etc. FREE! Today I spent a few moments in my local Kroger and got 2 packages of toilet paper for free. I also get online coupons and print them out at home. Again, I let other people do the work of compiling the deals. Two websites I check often are moneysavingmom.com and afullcup (go to the forum and they list deals at any and every store you can think of). Some deals are even nice enough to give away for presents (free razors for Christmas and nice lotions).
As a former teacher, I also have the option to be a substitue teacher. This is great, because I can work when I want, when my kids are at school, during school hours. If you have any questions about using coupons I'd be glad to help.
Veronica, I'm sorry that I'm not answering your original question. I just wanted to give an illustration of how I use coupons to contribute to my family's budget. I just went to Target and picked up 5 boxes of Electrasol gelpacs for dishwashers. Normally, they are $4.29. On sale, they were $3.25. I used 5 $2.50 off coupons that I got out of the paper, making them $.75 a piece. Before sale and coupons, the total would have been $21.45 (w/out tax). I spend $3.75 plus tax. So, I just made $17.70 in say a half hour to cut the coupon and enter the store. Plus, who doesn't like to shop? Oh, and I'm not paying federal taxes on that, so it's an even greater savings. Hope this helps someone.
Veronica, you will do what you have to do for your family. If that means you must work to simply survive, then that's what you have to do. Just always remember the old saying, "Nobody ever goes to their grave wishing they'd spent more time at the office."

I guess what I'm saying is that I commend you for having the toughest yet most rewarding job in the world. If your husband has decent insurance through his job and you guys can cut corners everywhere possible, I think you will be much happier (as will Max) if you can find a way to be with him as much as possible. Good luck.
Thanks, everyone. Yesterday I made up my mind: I was going to get a job to better our finances. I even worked out a few details with one of my best friends to possibly watch Max, pick up Holly from mothers-day-out, etc. Granted, I needed to find an actual job, but I felt OK about it. Then, at bedtime, I layed down with my sweet sleeping baby boy, and looked at his beautiful little face in the moonlight. I started crying and actually felt sick to my stomach. I laid there for three hours trying to sleep, but images of all the things I'd miss while working came to mind: My lazy mornings with him and his big sister, playing with the kids outside on that first fall day when there's a hint of cool in the air, nursing Max down for his nap, comforting him if he's not feeling well, dancing to the Mama Mia soundtrack with Holly ... the list goes on and on.

So ... I talked to my husband, and we think we can find some additional ways to cut corners (thanks for the coupon info, Danelle!) to give us a little more every month that we can put towards savings. James has a good job, we just need to be more careful, and hope he continues to get raises! I may end up going back to work, but right now, I feel the longer I can delay that, the better.

I'm also going to look into getting my teaching certification. My daughter's Mothers Day Out would be a perfect place to work, since her school would be free and it would only be a half day.
hi there. i just wanted to pass on some info as well. i was an active duty servicemember in the military. due to the demands of my job, i had to make the decision to leave with 12 years of service. my dmd sons were 8 and 5. it wasnt as demanding. i did find however that they older they became the more care was needed and i believe that if you are going to work or maybe go to school the time would be now. when they aren't so advanced. i am going to school right now to become a RN and by the time i finish both of my sons will be 13 and 10. i think at that time i can work full time for a little while and when they progress, i'll be able to cut down to part time. so my advice is explore your options and keep in consideration that as time goes by your son will need more and more care so try to find something you can do part time later. hope that helps!
Hi there,
I just want to chime in on this one. I am an RN and worked part time when Xavier was 8 mos old. I continued to work on a part time basis until he was 2.5 and I got pregnant with my daughter and needed to quit as pregnancy was never really compatible with working for me. When Erica was born Xavier was 3 years, 2 mos and in the mist of alot of sensory issues, and he HATED his little sister. Life at home was just miserable, Erica had reflux, didn't sleep, she cried alot, everytime she cried, Xavier would cry, then I would cry...when Erica was 10 mos old finances were low and I was not a happy stay at home Mommy. I needed to go back to work. As a nurse I loved working and I needed to be a grown up that felt valued for that again. I found a wonderful job working in the insurance industry with an amazing group of co-workers. My husband officed from home when he wasn't traveling for work and we found a nanny that came to the house daily so my kids lives were not disrupted, Daddy was available when needed many days.
3 weeks into the job Xavier was diagnosed with DMD. The next day I went to work (there was no way I could stay home and cry in front of him all day) I had 30 cards on my desk, a plant from the company and my boss informed they were unofficialy allowing my FMLA to kick in immediatly instead of waiting 1 year. I was told my family came first and do what I needed, my job was secure. 3 years later I am still there. But I will be honest. I go to work everyday because I want to. I need to and I enjoy it. I dont feel guilty for it. I enjoy being a working mother and I am a better mother because of it. I have a husband with a flexible schedule and I have a degree that allows me to have a high enough pay to have full time nanny care in our house (40 hours a week). I work from 7-3:30, I am home by 4pm and have until bedtime (8:30/9pm) with the kids. I also have the ability to work from home when I need to.
This year is odd, Xavier is in full time first grade and Erica is in Pre-school 6 hours a week, we choose to keep a full time nanny as Xavier does have about 2-5 sick days a month that he is home, so the times that Erica is in pre-school we have the nanny vaccuum and fold laundry. We do have our nanny drive him to his therapy appts during the summer if we are unavailable, but we take FMLA time for appts and school meetings. My husband has more flexiblity and he is very involved. So we do share these responsiblities.
I hope this adds another perspective, it sounds like you have made some smart choices. You are definately in a different place as your son is still a baby, mine was not diagnosed until he was older and that does change things. There is no right answer for any one person, just follow your mothers heart, it will never tell you wrong.
Jennifer, thanks so much for that perspective. I think it's wonderful when a working mom who loves her job is able to make everything work out so that whole family is happy, she feels good about herself and contributes to the family's finances. I guess I've just never been very "into" my career. I have a degree and worked two good jobs for three or four years each before having my first kiddo, but I was never ambitious and was always ready to leave before 5. I feel I did a good job for the companies I worked for, but my heart was never in it. I was one of those little girls who dreamed of being a mommy since I was tiny. :)

There was a lady I used to work with who had two kids who had to work (and was similar to me in the way she viewed her job) and she was just miserable all the time. If I worked right now, I think I'd be that miserable girl at the office who keeps looking at pictures of her kids and cries. I think I will look into options for preparing for work part-time while the kids are at school. :)

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