Parent's of special needs children...do you work?

[Disney1fan2002]

My sister had a 27 week premmie in May. While he is doing wonderful for a baby with the odds stacked against him, he does have some medical problems. He is on a whole bunch of medication, he needs a special formula, and he sees 2-3 specialists, aside from his regualr peditrician. Needless to say, he is at a Dr's office quite often. With all the different appointments.

My sister works in ajob that is very strict this time of year for time off. Basically, no time off is allowed from Labor Day until the week before Christmas. She works for a company that makes invitations & greeting cards. Christmas is HUGE.

Well, now she is the mom to a baby who has medical prblems. In 4 weeks, she has needed to take off 5 days for various Dr appointments, early intervention, ect. She had to call in sick Monday because Aidan had an appointment in Boston, and her boss told her to not even think about taking the day off.

I am really feeling bad for her. She NEEDS to work. If for anything, her insurance. Especially with the baby's problems. She has already used up her 12 weeks of FMLA when he was in the hospital for 4 months.

She metioned she may be aboe to get SS disability for him, and if that is the case, she may be able to stay home. Her boyfriend works, but I don't think they can live on only his income.

I wish I were rich, so I could pay her bills, and allow her to stay home to take care of the little guy.

If you are the parent to a special needs child, do you work? How do you balance work with everything else?

 

[LuvN~Travel]

Does the company your sister works for have more than 75(I think it is 75 and not 25, memory is a bit slack) employees? If so, then she is covered by the Family Medical Leave Act. With her son's health problems, she would definitely be covered. As it is, her own employer should have already given her the paperwork detailing her rights under the FML Act. If they haven't, then they could be held in violation of the law.
If the company doesn't have 75 employees, she is still probably covered, but she needs to contact a lawyer or someone with the Dept of Labor about it with questions. And , yes the FMLA does cover intermittant leave.
Tell her good luck!
Kim

 

[6_Time_Momma]

I do, but I work third shift, so I am able to take my son to doctor's appts during the day. I try to schedule them after my night off though, or I'm like a zombie through the whole appt. And some of those darn things are an hour drive away!

 

[tw1nsmom]

I don't work. I know a few other moms that work, but most of the moms of special needs children that I know don't work either. I feel like it's a full time job just filling out the paper work, reinforcing therapy at home and running to appointments. Don't get me wrong. There is nothing wrong with working. I just don't think I have it in me to do the juggling act (I'm barely holding on now). I think it depends on the person though. Some people are better able to multi-task than others. Also, I think it would be necessary for either the mom or dad to have an extremely flexible job. Maybe your sister could start to look for work in a more family friendly company.

 

[Piglet]

Sent you a PM.

 

[bsnyder]

What a tough situation. My heart goes out to your sister.

My sister has dealt with this - her middle child is special needs, both physically and developmentally. Fortunately, she doesn't have to work for financial reasons, but I think she always invisioned that she'd return to the work force when her children were in school all day. But dealing with doctors appointments, hospital stays, insurance paper work and the like has derailed that plan.

 

[ChrisnSteph]

I was working when my first son was born with severe special needs, and I continued to do so for a year and a half due to financial reasons. My boss was very understanding at the time, and allowed me to take time off for dr. appts., and he even allowed me to bring him to work with me when I had to. That got old after a while, and my boss grew weary of it. I realized that I just couldn't do both, and I wanted to devote more time to my son. I gave a 3 month notice, and my boss fired me the next week. It turned out to be a blessing, because Aaron passed away three months later. Those were three months I got to devote entirely to my little boy and I regretted not quitting sooner. I'm sure all parents of special needs children could be home with them, but it's not always possible. Fortunately for me, we also had respite care and a nurse cared for him several days a week. She was wonderful and became part of our family, and she took wonderful care of our little Aaron. I admire you for wanting to help your sister!

 

[GEM]

Hi! The little guy in my sig pick was also a 27 weeker - 1lb and 7oz! It's great that your nephew seems to be doing pretty well, overall.

I do work, but I'm lucky enough to work at a job that lets me set my own hours, come in when I need to and stay home when I need to, take Paul to work with me, etc. It's an unusual situation, and we're really lucky!

We were also really lucky that, despite being so tiny and having a long NICU stay, Paul was very healthy. He was never on any medication, never had to have any kind of formula, never had to see anyone but his regular pediatrician for regular well baby checks, etc. He did have some follow-up appointments at the Preemie Clinic for the first two years, but they were only once every 6 months.

The thing that was rough that first year was that we had to be very careful about taking him out in public, exposing him to lots of people, etc. since he was at a high risk of developing RSV, which can be potentially fatal. Because I that, I had to hire a nanny to keep him in our home when I did need to be at work, which luckily was really only a few afternoons a week. The rest of my work, I did from home with no problems.

Paul didn't qualify for SSI (Supplemental Security Income) because he didn't meet the standards for being disabled and our income was too high anyway. I think it varies by state, though, as to what other programs are available. She might also look into respite care programs, etc. in her area. We had private insurance, so it wasn't an issue for us, but I do know that he would have been covered by several state programs if we hadn't. Tell your sister to talk to the social workers at the hospital where her son was born. They should be able to give her some information about programs they might qualify for.

By the way, tell your sister that it does get easier. Paul is just like any other two year old with no lingering complications from his very low birthweight or his early arrival, other than still being very tiny for his age. Now, that isn't always the case and it's true that we have been lucky. I'd just like her to know that it is possible for all of them to lead a normal life, eventually!

Also, please give her the address to our preemie group -

Preemie Web Group

It's a group of great moms and dads with lots of experience dealing with preemie issues - emotional, medical, financial, practical, and lots more!

By the way, you sound like a very special sister. When you're dealing with these kinds of issues, having supportive family and friends makes all the difference in the world!

 

[binny]

I work from home so it makes it easier most of the time ( except when Im actually trying to work LOL)


We are on Katie Beckett which is the Medicaid program for people who are out of the income levels for traditional Medicaid. It has made a HUGE difference! They cover EVERYTHING for dd. Her therapies, medications, Dr.s and even the dentist.


Not sure what State she is in but here is a link to Katie Beckett programs that came up on google. If her State isnt listed just put Katie Beckett, (her) State. It should come up.

http://www.google.com/search?source...rls=GGLG,GGLG:2005-37,GGLG:en&q=Katie+Beckett




Good luck I know it can be hard!

 

[laurie31]

The NICU where her baby was should have a social worker available to help people with exactly these kind of issues.

People often think of social workers as being called in when there's a question of neglect or abuse, but medical social workers help parents nagivate the maze of red tape that they need to untangle to get the funding they need. Even if a family has good insurance, a child with complex medical needs can cost in noncovered ways, such as costs associated with travel to specialists (gas, eating out) and higher power bills due to home equipment.

LOTS of people in her situation have problems like you described. Please tell her to let her doctor know and ask for a medical social worker to help her. That's what they're there for!



Laurie

 

[Megan's Mom]

Yes I work and I think in our situation it has really worked well for us. I teach so the hours are not that bad and my dH has flexibly work hours so in the early years he did a lot of teh dr appointments because he could leave for an hour or two. But Megan is in school and she goes with me now and that works out really well. My parents help out a lot and when she is sick and can't go to school they keep her so that we can save our days for when we really need them. The main thing that your sister need to do is have a good support network that can help her out. Maybe family members can take the child to dr appointments so she won't have to miss as much work. As he gets older it will get better. They seem less sickly after about age 3.

 

[thelittlemermaid]

I don't work. In the small town that I live in, there are not alot of care providers that will take care of special needs kids. My own MIL can't or should I say WON'T take care of her own grandchild with special needs.

DD can catch anything on a dime {sick wise} so it's just alot easier for me just to stay home. DH works 3rd shift, so if DD is sick at night I don't have any help. DD has trouble sleeping anyways, so when she gets sick, I might get 8 hours of sleep in a week.

Hugs to your sister!!

 

[barkley]

social security disability regulations do not vary from state to state. besides needing to meet the medical criteria for qualification there is also a financial need test (and many find that their income exceeds the maximum). the amount paid for an ill child is not a tremendous amount. she can go to the social security website to see what the income/medical guidelines are. even if a child meets the criteria it can take as much as 2 years or more for an application to be approved (and much frustration can ensue with filing appeals, getting the supporting documentation....).

you might find some great info. for your sister on the dis disabilites forum.

best wishes.

 

[minkydog]

I work, but I had to change jobs after DS10 was born. I'm a NICU/PICU nurse and after DS was born my life was so intense at home I simply couldn't give any more at work. I found myself crying non-stop. So I changed to a less demanding job, giving advice to parents who have sick children(fever, colds, diarrhea, etc) Much less stressful. I also quit working night shift and started working fewer,more flexible hours which better accomodated all the therapies and doctor appts.

The first few years were the hardest when the situation seemed never-ending. We got the Katie Beckett waiver, which pays for therapy, orthotics, wheelchair, and doctors. Our income was too high for SSI. Eventually my son got stronger and the situation less desperate. We hit our stride and now it doesn't seem so hard. Except for finding a babysitter. It's hard to find someone comfortable with a non-verbal, diapered 10yo.