Re: How does anyone keep a job as a special needs parent????

February 17, 2011

I hope you get an answer for that.... I did what I could not to lose mine. I had

an FMLA paper stating that I would have absences for illnesses and doctor

appointments. It worked for me, but circumstances out of my control my other

daughter got sick and because of the point system I lost my job because of that

and not my special needs child. This is just for the sake of saying it, but the

day that I was fired, I was told that I should have lied and said it was my

younger daughter (with the FMLA leave papers) that was sick and not my older

one. Not that it would have ever gurarnatted that I would have kept my job, it

never will.

I hope that helps and I hope that you get the help you need....

>

> Hello,

> I am feeling really down and could use some sound advice right now. As most

of you know my daughter Lexi who already was diagnosed with pauciarticular

juvenile rheumatoid arthritis at 3 yrs old, was also recently diagnosed in Dec.

with ulcerative colitis. We have been dealing with not only the diagnosis but

getting her pretty serious symptoms under controll, as well as start Remicade

infusions and deal with the odd side effects over the past few months. Add on

top of that the normal illness that most young kids get, and she has had a rough

4 months or so. My frustration is that I am now in risk of losing my job as a

special ed teacher in 12 because I have had to miss so much work for

doctor and specialist appts plus her illness. It seems that it is almost

impossible to keep a full time job when you have 4 children, much less a child

with medical needs that flare up like this. They know what has been going on at

my work but in my bosses words, " While we are empathetic to what you are going

through, we are also having a problem with your excessive absences. " What I

would like to know is how they expect me to control this stuff right now? I am

supposed to have an " attendance meeting " with my boss on Tues. afternoon and I

am not sure if they will try to get me to " promise " not to miss work or what,

but is there anything that protects me from being let go when you have a family

member or child with a serious illness? I'm so down right now - I am the major

financial earner in my house and being special education I would've thought they

would get this!!!! any thoughts would be great right now...

> Thanks,

>

February 17, 2011

,

So sorry. I only work one day a week as a nurse. That's all I can handle with

both of my kids with JA. When I get one " fixed " the other develops something.

Last 2 months we have had migraines, side effects from migraine meds with one

kid, and bad knee flare and physical therapy with the other. My husband also has

ulcerative colitis and has flares occasionally.

I got in trouble with my job last April. My husband passed out on the porch

during a flare and an ambulance took him into the ER where I work, last April.

In Jan, my daughter had an appendectomy. In Feb., my son broke his foot and

needed me. So all of those incidences, caused me to miss too many days. I was

suspended for 3 weeks. I barely kept my job. Yes at a hospital. Yes the

managers are friendly and aware of my situation.

What do you do? I don't know. I would think you may need to apply for your

daughter's disability. I am not sure if she would qualify, but you may need to

look into it. You may also want to try to find a job where you can work from

home. I started an ebay business on the side for extra money. It got too much

to handle, but it helped for a while.

I hope some of the other moms have better ideas. Our copays are horrendous.

Our out of pocket medical expenses run over $1,000 a month. How are we supposed

to make it? I haven't looked into disability, yet. I guess I need to as well.

I sure wish I had an answer.

Audra

14 poly

Peyton 13 poly

>

> Hello,

> I am feeling really down and could use some sound advice right now. As most

of you know my daughter Lexi who already was diagnosed >

February 17, 2011

I totally get where you are coming from. I have my daughter with arthritis

and my son had infantile spasms, but as a result of those seizures has been

diagnosed with auditory processing problems, visual processing disability,

sensory processing disorder, global apraxia.....the list goes on and on.

Bryce has lots of therapy appointments in addition to Audrey's stuff. This

is what I suggest: 1. Get yourself covered by FMLA. That protects your job.

2. Arrange as many appointments as you can on one day. Its nothing for us

to have 6 appointments on my day off. I schedule them that way so I have to

take as little time off work as possible. 3. Bryce's therapy appointments

are scheduled for the very last appointment. That way I only have to leave

30 minutes early and most pf the time its not a big deal. 4. As a mom, I

know we feel we have to handle everything. Since you said you are the main

breadwinner, can your husband pitch in and take her to some appointments? I

know how hard it is to juggle everything and keep your sanity.

Audrey's mom

Sent via DROID on Verizon Wireless

How does anyone keep a job as a special needs parent????

Hello,

I am feeling really down and could use some sound advice right now. As most

of you know my daughter Lexi who already was diagnosed with pauciarticular

juvenile rheumatoid arthritis at 3 yrs old, was also recently diagnosed in

Dec. with ulcerative colitis. We have been dealing with not only the

diagnosis but getting her pretty serious symptoms under controll, as well as

start Remicade infusions and deal with the odd side effects over the past

few months. Add on top of that the normal illness that most young kids get,

and she has had a rough 4 months or so. My frustration is that I am now in

risk of losing my job as a special ed teacher in 12 because I have had

to miss so much work for doctor and specialist appts plus her illness. It

seems that it is almost impossible to keep a full time job when you have 4

children, much less a child with medical needs that flare up like this.

They know what has been going on at my work but in my bosses words, " While

we are empathetic to what you are going through, we are also having a

problem with your excessive absences. " What I would like to know is how

they expect me to control this stuff right now? I am supposed to have an

" attendance meeting " with my boss on Tues. afternoon and I am not sure if

they will try to get me to " promise " not to miss work or what, but is there

anything that protects me from being let go when you have a family member or

child with a serious illness? I'm so down right now - I am the major

financial earner in my house and being special education I would've thought

they would get this!!!! any thoughts would be great right now...

Thanks,

February 17, 2011

,

Such a good topic and I'm reading for the answers! I've been a stay at home mom

forever, picking up part-time stuff now and again around the holidays. The plan

was always for me to go back into the work world when our youngest, ,

started first grade. Well, that is this year! It was about this time last year

when I started panicing because I couldn't figure out how I was going to work

with Kat's arthritis and her brother's out of control migraines. I finally had

to admit that I couldn't do it. There are days, even an occasional week where I

start thinking about it again, and then they both start flaring up as if to

remind me of why I am home. I went back to my seasonal customer service job

that I have done off and on over the years in November. It's in the evening so

I can pass the kids to my husband, but even then I missed about 1 evening a week

due to random bad timing of kids needs and husbands unavailableness. I was

shocked when my boss told me I'd be welcomed again next year! I can't imagine

how difficult it is to hold a permanent job with a chronically ill child. I

think that all the time! I am so impressed with all of you who are doing it. I

hope there is an easy " pass " in the future so we can all work where we want or

need to and still be able to care for our children. Good luck finding that

answer, I'll be waiting to hear when someone finds it!

Kirsten

mom to , 6, spondy

>

> ,

> So sorry. I only work one day a week as a nurse. That's all I can handle

with both of my kids with JA. When I get one " fixed " the other develops

something. Last 2 months we have had migraines, side effects from migraine meds

with one kid, and bad knee flare and physical therapy with the other. My husband

also has ulcerative colitis and has flares occasionally.

>

> I got in trouble with my job last April. My husband passed out on the porch

during a flare and an ambulance took him into the ER where I work, last April.

In Jan, my daughter had an appendectomy. In Feb., my son broke his foot and

needed me. So all of those incidences, caused me to miss too many days. I was

suspended for 3 weeks. I barely kept my job. Yes at a hospital. Yes the

managers are friendly and aware of my situation.

>

> What do you do? I don't know. I would think you may need to apply for your

daughter's disability. I am not sure if she would qualify, but you may need to

look into it. You may also want to try to find a job where you can work from

home. I started an ebay business on the side for extra money. It got too much

to handle, but it helped for a while.

>

> I hope some of the other moms have better ideas. Our copays are horrendous.

Our out of pocket medical expenses run over $1,000 a month. How are we supposed

to make it? I haven't looked into disability, yet. I guess I need to as well.

>

> I sure wish I had an answer.

> Audra

> 14 poly

> Peyton 13 poly

>

> >

> > Hello,

> > I am feeling really down and could use some sound advice right now. As most

of you know my daughter Lexi who already was diagnosed >

>

February 18, 2011

,

I am so sorry to hear that you are having this problem. I have been so blessed

with two jobs that really understand and allow for this. After my divorce I

started working full time at the church as secretary/custodian. If I had to take

off for an appointment they let me and I just made up my hours on a different

day. Three and a half years ago I started a new job and when I did I told them

that every other month I had to make the trip to Kansas City for the rhemy appt

and it was always a full day off. Three or four times a year I had to take at

least a half day off for the neurologist appt for her which fortunatly is only

30 minutes drive. I get five days a year sick leave and so am allowed to use

that for my childs appointments. The rest of her appointmnets I use my PTO for.

I feel certain that God gave me the job I have and has allowed them to work with

me. Fortunatly with Jaye as old as she is, she can stay home alone when

she is sick or I would be out of a job. Also most of these days off are planned

ahead so they are not caught off guard. I so much sympathize with you. If I

had had to work out of the home when my three youngest were little I would not

have been able to keep a job. They were sick so much. Being a single mom I have

to work two jobs, the first one is set hours and the second one is just 10 hours

per week at my choosing. I keep thinking that I need to find a new job because

I need to have a better income and keep my insurance. But I love my job and I

know that most places will not work as well with me on time off. I pray that

you will be able tokeep your job and they will let you know that you do not have

to stress about missing so much.

Veri & Jaye 17 poly

How does anyone keep a job as a special needs parent????

Hello,

I am feeling really down and could use some sound advice right now. As most of

you know my daughter Lexi who already was diagnosed with pauciarticular juvenile

rheumatoid arthritis at 3 yrs old, was also recently diagnosed in Dec. with

ulcerative colitis. We have been dealing with not only the diagnosis but getting

her pretty serious symptoms under controll, as well as start Remicade infusions

and deal with the odd side effects over the past few months. Add on top of that

the normal illness that most young kids get, and she has had a rough 4 months or

so. My frustration is that I am now in risk of losing my job as a special ed

teacher in 12 because I have had to miss so much work for doctor and

specialist appts plus her illness. It seems that it is almost impossible to keep

a full time job when you have 4 children, much less a child with medical needs

that flare up like this. They know what has been going on at my work but in my

bosses words, " While we are em pathetic to what you are going through, we are

also having a problem with your excessive absences. " What I would like to know

is how they expect me to control this stuff right now? I am supposed to have an

" attendance meeting " with my boss on Tues. afternoon and I am not sure if they

will try to get me to " promise " not to miss work or what, but is there anything

that protects me from being let go when you have a family member or child with a

serious illness? I'm so down right now - I am the major financial earner in my

house and being special education I would've thought they would get this!!!! any

thoughts would be great right now...

Thanks,

February 18, 2011

Hi ,

The Family and Medical Leave Act of 1992 allows for up to 12 weeks of unpaid

leave per rolling year to care for your own chronic medical needs, a dependent

with chronic medical needs, or for the birth or adoption of a child. Did you

ever see the movie " A Child's Wish " ? It was about the father of a child with

cancer that lost his job because of taking care of his daughter and what he did

for the rest of us to keep that situation from happening to someone else.

Each workplace is different on how to go about applying for FMLA coverage -

where I work there's a lengthy form you take to the doctor of the person

affected. At my husband's work it's more simple. Check with Human Resources for

your workplace and they should be able to guide you through it. It is also

" retroactive " - once you declare you are using it, it goes back a few weeks too.

I also work as a nurse for a hospital owned company, and 2 years ago (long

before my Lexi was diagnosed with JA) was one call out away from 3 days unpaid

suspension. At that point we decided that I would work one day a week

(Saturdays) and we cut alot of expenses. We've saved alot not having to maintain

a wardrobe for me, eating out expenses, etc. We're even in the process of short

saling our house so we can move somewhere with cheaper rent. We tried a loan

modification to reduce our payments, but the amount it reduced was to 31% of our

gross income, they didn't care that we spend nearly $1000 on medical!!!

I'll be praying for you as you figure out what to do with work. Such a difficult

situation.

, daughter is,5 - pauci

>

> ,

> So sorry. I only work one day a week as a nurse. That's all I can handle

with both of my kids with JA. When I get one " fixed " the other develops

something. Last 2 months we have had migraines, side effects from migraine meds

with one kid, and bad knee flare and physical therapy with the other. My husband

also has ulcerative colitis and has flares occasionally.

>

> I got in trouble with my job last April. My husband passed out on the porch

during a flare and an ambulance took him into the ER where I work, last April.

In Jan, my daughter had an appendectomy. In Feb., my son broke his foot and

needed me. So all of those incidences, caused me to miss too many days. I was

suspended for 3 weeks. I barely kept my job. Yes at a hospital. Yes the

managers are friendly and aware of my situation.

>

> What do you do? I don't know. I would think you may need to apply for your

daughter's disability. I am not sure if she would qualify, but you may need to

look into it. You may also want to try to find a job where you can work from

home. I started an ebay business on the side for extra money. It got too much

to handle, but it helped for a while.

>

> I hope some of the other moms have better ideas. Our copays are horrendous.

Our out of pocket medical expenses run over $1,000 a month. How are we supposed

to make it? I haven't looked into disability, yet. I guess I need to as well.

>

> I sure wish I had an answer.

> Audra

> 14 poly

> Peyton 13 poly

>

> >

> > Hello,

> > I am feeling really down and could use some sound advice right now. As most

of you know my daughter Lexi who already was diagnosed >

>

February 19, 2011

I have two kids both considered special needs but , 7, is more 'special'

than Arianna, 9. I used to have a career and even took two breaks from it to

care for my kids when they were babies...then when was two and really

having major issues I stayed home. Unfortunately four years ago we were hit,

hard, by the economy and my husband lost a series of positions and finally lost

his career due to the economy. So I had to and continue to have to work. But I

no longer have a career...I just have a job...a huge difference.

I work for a privately owned firm that works with me...I have intermittant FML

although I rarely need to use it. I am an hourly employee and typically work my

required hours but often have to tweek my schedule. When things are going well,

I often work extra hours and overtime...to help compensate for the days I can't.

has had so many issues overs his seven years...he has seen so many

specialists...some I had no idea even existed until him. Like did you know there

is such a thing as a pediatric neuro ophthalmologist...well there is and we've

seen one. Currently his main issues are JIA, sensory issues, speech issues,

nystagmus and other vision issues...so we are still busy with doctor and weekly

therapy visits. He is also in a self contained special needs class at school so

we can add IEP and school visits to our list.

I am the medical coordinator at out house but my husband must help...he does

take the kids to the 'non-essential' doctor appointments. When he was unemployed

and underemployed he did a lot more...now that he is back working in a great new

job/industry and will soon be the primary wage earner again...he is doing less.

Luckily (sounds strange) his direct boss has JIA and his company is family

friendly...plus when he was hired he told them he will have to take some time

for the kids appointments.

I am very blessed to have the job I have working for the owner and direct boss

that I have as well. At the beginning of every month I give them my schedule of

doctor appointments and let them know when I will be working on those days. We

also have scheduled weekly therapy sessions every Monday afternoon so everyone

knows I leave early on Monday.

It's hard but we seem to have settled into a good routine...it's taken years to

get to this point but I am so glad we are finally here. I wish that you too may

soon arrive at this point.

All the best,

& , 7, poly

Sent from my iPhone

February 19, 2011

My son has crohns and I have the FMLA to protect my job. Luckily my employer has

been pretty good so far.

Teri (- pauci JRA in remission)