Question about working with PANDAS kid/s

[bgbarnes]

How do you do it? I have been working for my family business and have had changes in the company (like many people) we are downsizing or possible closing our doors and I need to get a job with another company. Going without my salary- or part of my current salary is not an option. I am starting a business on the side in hopes be able to build up while working for someone else to eventually quit, to be able to be home running my own business again but it is going to take time. I have had plenty of flexibility to do what ever I needed in the past for my ds because it was my company. Now that I know it is PANDAS and we may need even more time away from school for Doctors appointment or waiting to get through an exacerbation- how do you do it?????

 

HELP!

Brandy

[dcmom]

Brandy-

 

I have no idea how people do it.

 

My dh works a lot. I have been home with the kids since they were born. I was planning on going back to work last year, getting my resume together, when pandas hit. It has been a roller coaster of a year. Both of my kids were diagnosed with pandas, in major exacerbations, in the hospital with pex, since doing well, but taking off a lot of time when there is strep exposure or illness. We are in the process of moving back home, and planning on spending a lot less $$ on our house- with the knowledge that we don't know what the future may bring. At this point I can't imagine going back to work, ANY kind of aftercare, or not having the time to let the kids stay home when needed. Pandas puts so much stress on the household as it is.

 

So- I don't know what to tell you. We are lucky enough to be able to lighten our financial load, and re prioritize our life- to accomodate what life may have in store.

 

I will be REALLY interested in other's responses- as I would like to have something for myself in the future!

 

Eileen

[peglem]

I quit work, cutting the family income in half, to stay home with my PANDAS kid. I was a teacher, and my last year of work, I was constantly leaving work early or taking days off. It wasn't fair to my students and way too much stress for me. Whenever I look at part time jobs I could do while she's in school, it keeps coming back to what do I do when she has a doc appt. or a procedure?

[JAG10]

I wake up and manage to get me and my two girls dressed, fed and out the door. I drop them off at school, and 10 minutes later I'm at my school where I work with children with diabilities all day. Then, I get back in my car, drive 10 min. and pick them up from extended care. I listen to them argue and complain about the daily grind the whole drive home. Then, once we arrive home, I spend the next couple of hours teaching dd10 all the material she missed all day at school bcs she is so internally preoccupied and distracted by her own running thoughts. Make dinner, clean up, showers, wash hair, brush hair, dry hair. Clean-up as much as I can manage and leave the rest until... Work on my lessons for the next day. Crash.

 

No magic here. Just one day at a time, one foot in front of the other. One of the hardest things for me is her lack of self-help skills. Having to tell her or walk her through step by step very mundane activities of daily living or they don't get done bcs she gets distracted or stuck has aged me so much. The behavioral regression in a tween that can act like a 5 y.o. but needs less sleep and can get into more trouble than an actual 5 y.o. is exhausting.

 

Work is my break. It's where I'm competent and successful and patient. Even working with children with disabilities can be easier than being home with my own. This is all I know. For me, I feel I am a better mother bcs I have a career that fulfills me and I enjoy. I have a terrific husband who helps get everyone dressed and fed and out the door in the morning and pitches in with homework, dinner, whatever needs to be done every evening after his workday.

 

It's worked for us bcs it has to.

[MomWithOCDSon]

It's worked for us bcs it has to.

Ditto.

 

I feel torn everyday when I leave for work, not knowing what kind of day DS is going to have. I've been with my company for more than 20 years, but now it's beginning to look as though we're not going to survive the recession, either, and I'm incredibly torn about a fresh job search; what kind of flexibility can I manage? what kind of mom can I be while still earning a majority of our family income. DH is an artist, and while he does fairly well, he is still freelance, and his income is not reliable for monthly bills; that's all on me.

 

I've been very fortunate up to this point to be in a job . . . and in a profession . . . that is fairly flexible. I have deadlines, but it's pretty much my choice whether I meet them 9 to 5 on a Tuesday, or if I'm back at my laptop after DS is in bed, or on a Saturday when he's engaged in a video game or off to the swimming pool with DH. So I think that's one suggestion: see if you have a skill set to offer in a less "locked in" line of business, one in which it is more self-directed and you can make up for any perhaps "lost" hours due to your kids' needs or appointments, at odd hours when your family is more or less at peace.

 

The other suggestion I would have is sort of the flip side of that: go to work for a large company that is compelled to abide by governmental guidelines with respect to sick time, family leave, etc. It's not the ideal situation for anyone, if your child's condition should require your taking time off more or less immediately after being hired. But at least you would have some protection, I think.

 

In the end, I think U.S. businesses are wising up these days about employees having families, outside lives, a need for flexibility, etc. Hopefully, if you're putting out that vibe that says, "I'll do whatever it takes to meet the company's needs alongside my family's, just give me a chance," that chance will come your way!

 

Hang in there, share with the hiring world the dedicated, caring, responsible individual that you are, and anybody'd be crazy NOT to hire you!

[becjonz]

I wake up and manage to get me and my two girls dressed, fed and out the door. I drop them off at school, and 10 minutes later I'm at my school where I work with children with diabilities all day. Then, I get back in my car, drive 10 min. and pick them up from extended care. I listen to them argue and complain about the daily grind the whole drive home. Then, once we arrive home, I spend the next couple of hours teaching dd10 all the material she missed all day at school bcs she is so internally preoccupied and distracted by her own running thoughts. Make dinner, clean up, showers, wash hair, brush hair, dry hair. Clean-up as much as I can manage and leave the rest until... Work on my lessons for the next day. Crash.

 

No magic here. Just one day at a time, one foot in front of the other. One of the hardest things for me is her lack of self-help skills. Having to tell her or walk her through step by step very mundane activities of daily living or they don't get done bcs she gets distracted or stuck has aged me so much. The behavioral regression in a tween that can act like a 5 y.o. but needs less sleep and can get into more trouble than an actual 5 y.o. is exhausting.

 

Work is my break. It's where I'm competent and successful and patient. Even working with children with disabilities can be easier than being home with my own. This is all I know. For me, I feel I am a better mother bcs I have a career that fulfills me and I enjoy. I have a terrific husband who helps get everyone dressed and fed and out the door in the morning and pitches in with homework, dinner, whatever needs to be done every evening after his workday.

 

It's worked for us bcs it has to.

 

Wow! You just described my life right down to the job teaching kids with disabilities. Have you found all of this harder even because you can have the patience all day with your students, or come up with accommodations automatically for your students but at home it is more of a struggle. I have felt frustrated with myself through all this because I "should" know some magic to help this or somehow should manage all this better but it is so different when it is your own kid!

[Worried_Dad]

I think this is one of the hardest, most devastating things about PANDAS. It drains the entire family, and the uninitiated really don't understand how all-consuming it is to take care of a PANDAS child in the midst of exacerbation.

 

My wife was already a stay-at-home mom by choice, but caring for 3 boys (now 13, 9, and 4) was overwhelming with PANDAS in the picture. I've been on intermittent FMLA leave for 3 years now and have missed lots of work. We put our youngest in full-time daycare even though we can't deduct the expense on taxes (since my wife doesn't have a "job" according to the government... like to see an IRS auditor try to take care of a PANDAS kid!).

 

Wish I had better answers. My wife and I have been able to trade off and "cover for each other" during the worst times, when it felt like we were hanging from the cliff by our fingernails. It's critical to have a support system, for sure. If you have close family or friends who can help out, that's huge.

 

On the positive side: with the right treatment, it gets better. Our PANDAS son is 90% better than he was 6 months ago, and it is an immense relief for our entire family! Some semblance of normality is starting to creep back into our lives... although the healing process for all of us will take some time.

[bgbarnes]

Thanks everyone! I do have support but I know my parents can't really handle exacerbation- BUT we also know what is going on now and know to get him abx and possible a prednisone burst etc.... I can't wait to get all the tests back in 3 weeks...and start our journey. So far he is being WONDERFUL-and it seems the month of abx did us wonders.

 

I will just have to have faith that it will work out- I am divorced ( luckily I get along great with my ex) and remarried with my parents around the corner so I have options. We have divided up the kids at times to give them undivided attention, especially when my son was acting up. I can see us utilizing that in the future too.

 

Worried Dad the intermittent FMLA is always an option and I will probably use.

Thanks!

Brandy

[tpotter]

I also quit my job last year when things got their worst...no choice, I was constantly calling in to leave early or take the day off. I now work as an independent contractor (with children) who's parents totally understand if I have to take off time. Also, my husband takes some occasional days off (he actually gets paid for) when I am taking off too much time, and having trouble making up the visits (yes, I have to make everything up...I work in Early Intervention.) Luckily, things have calmed down a lot, (the crisis was last year), and I can finally work at least some. But, honestly, there were times last year that I didn't know how we would pay the bills, because I did quit my job, and my husband's salary, although high, was not enough to pay them. Good luck. It is a very trying time, particularly in the beginning.

[earnestfamily7]

I currently stay home with the kids. I stopped working 6 months prior to our 1st major exasperation (after child 3 was born) - It may sound hoakey but I told my husband something is going to happen and I wont be able to keep up with work. (I was working as a Director of Alumni and Development at a Private school. lots of nights and weekends... very hard with small kids) .... looking back it was the right decision at the time as it allowed me to run to endless appointments with DS.... but it was financially draining and still is.... I sell on ebay to try to bring in extra income...

 

There is not an easy answer - I think this was right for us but there are many days that I think if I would have continued working I might be able to afford the treatments the kids need without so much stress....

 

I too try not to think it about it too much... I take one day at a time and have faith that God will provide what we need... and so far it has worked

[kimballot]

I am fortunate to work a flexible schedule, but it is still a full time job. I am able to be home most days after school (luckily, that is 4:00 is now that kids are older - it used to be 2:30!), to make sure all homework has come home. Then I cook dinner and try to do a little housework (when I am not distracted by this forum ) Then dinner at 6 or so - homework at 7, plus driving to activities. Try to finish everything up by 9:30 for medicine, showers and bed. Then I pull out my laptop and try to get a few more hours in.

 

Fortunately, I've never required a great deal of sleep!

 

I've also always tried to schedule my day so that I work late on Fridays - that way my husband or mother can handle the kids in a relaxed way, since there is no homework or tests the next day. This also allows me to take 1/2 day off during the week if I need to schedule MD appointments.

 

Let us know what you come up with!