My husband and I don't know what to do. My son who is almost 3 has complex febrile seizures. He has had 11 seizures that began when he was 11 months old. Some have been as long as 30 minutes and only happen if he has a fever. He can have them at only 99 so most of the time we don't even know he is ill. I currently am working part time and love my job. My husband's grandmother watches the kids for us currently and knows how to handle a seizure and give medication appropriately if needed but has not experienced a seizure with him. We are comfortable with her caring for them. Unfortunately, she is moving in a month and we will no longer have her. I have been searching for sitters/nannies and have found a couple that are willing to watch my children. Financially I really need to work we are barely keeping ends met and are in over our heads in medical bills. My son is expected to grow out of this condition hopefully by the time he is 5 or so but they can not guarantee that. Do I trust someone to take care of my kids and hopefully correctly take care of my son during a seizure? If he does not get his medication soon after seizure starts we don't know how long it will last. He doesn't breathe appropriatly during one as well. I am scared out of my mind to leave him with someone but really need to work. I could never forgive myself if something happened to him in the care of someone else. Do I hire a nanny or stay home?
You could see if you can get an adult sitter who has nursing training. You might feel more comfortable leaving him with someone who has medical training.
Otherwise, maybe look at work-from-home opportunities? They are hard to find (ones that are not scams) but they do exist. That way you could make money and be home to care for your little one at the same time.
Hi Michelle,
As you explore your options, I would be delighted if you would take a look at the company I've been in partnership with for 5 years. They have given me and tons of mommys the flexibility to remain SAHMs over the last 24 years of their existence. I'm sure they can do the same for you or at least supplement your income so that you can have enough to cover the cost of a nanny. No risk, no scams as they are in good standing with the BBB and the US Chamber of Commerce.
Give me a call at 630-234-1086 and let's set up a time to meet in person or online.
Blessings to you and your family,
~Michelle
630-234-1086
[email protected]
I sympathize with you and I am hopeful that you can find a solution that works for you and your family. I have a child with medical issues as well and we struggle with this issue each year, especially now in this economy!
I am just going to throw out some things that may be helpful resources:
Does your child qualify for "SSI" income through Social Security disability funds? That may amount to enough to offset your staying home to care for him. The fund was established to enable caregivers to provide for adult children or young children with disabilities.
The Division of Specialized Care for Children is administered through UIC that enables families to pay for various services/equipment and provides info about free community resources (including respite, I believe) at no charge. The application is on the UIC website, or google "DSCC". You do not have to live in Chicago to qualify. I am not sure if seizures is a qualifying diagnosis, but you could check with someone at their 800 number, or they could offer other suggestions about where to get services.
Have you checked with you insurance regarding subsidizing nursing care for some/all of the week?
Can you stagger your work schedule so you are working evenings and weekends while your partner is home? Or each of you work 3 12-hour days? I know this will not work for all professions- and it means little "family time" together, but it may be worth looking into it at least as a trial run for a year and see how it goes.
Working for home full-time would mean little time with your kids and like the previous poster said, options for full-time wages for a legit company are limited. Even so, you would need to be able to meet with customers or do sales out in the community for most at-home companies like Usborne or Discovery Toys. It is not really "working from home" in my experience since I had to do parties and booth sales all the time and then had to book sitters for those. (And never actually made a decent hourly wage!)
GOOD LUCK!
Michelle
This is such a tough call. Obviously our kids are our priority but we need to be able to take care of them financially as well. What if you have the nanny or sitter take CPR classes as well as teach her all there is to know about your son's condition? Or, what if you post a wanted ad at a nursing school? Install a camera in your house so you can check up on them time to time?
I hope these suggestions help!
I do not have the same circumstances but
My husband and I decided to make drastic changes so I can be home with our girls.
We live in a small apartment now (no yard -but we go to the park everyday) We find free entertainment (nature centers ect) We eat dessert out once a week (other than that we don't eat out)
When I was working I looked into our finances- I was surprised how much $ we spent on gas, work clothes, dry cleaning, lunches out, dinners out, toys bought out of guilt, ect
It is a major decision- not to be taken lightly.
Do you have a good support group (friends with kids, girlfriends ect) If not, work on this- you are going to need some.
Either way, I wish you the best of luck
Hi Michelle,
My heart goes out to you truly. I don't think I could leave my child with someone else unless they really had experience with this kind of thing. Don't make yourself sick at work worrying about him. I understand the need to work though, money pays the bills. If you aren't able to cut back on finances to stay home, can you consider a couple options? 1.) Get a new job that offers daycare on sight, so you can check on your son throughout the day and be close to him 2.) Get a job that is at opposite times of the day thay your hubby works (maybe nights and weekends)...I know that doesn't leave alot of family time, but lots of parents do it this way, so they don't have to pay a sitter 3.)Get a job you can do from home (maybe even ask your current boss if there are any telecommuting opportunities at work), so a sitter can watch the kids at your place and you can be within arm's reach (If you have the room, consider a live-in nanny that can have room and board as part of their compensation to cut cost for you) 4.) stay home with the kids and watch someone else's kids yourself to make some extra money, but still stay home. Whatever you decide, know that above all you have to do what is best for your family and situation. Also, hopefully this will only be temporary and your kids will be in school during the day and your son's condition will get better. If you have to stay with your current job and send the kids to a sitter, than just educate the provider over and over and give her stuff to read about febrile seizures and procedure. And don;t feel bad about calling during the day to check up on your son. Good Luck.
Michelle,
I just emailed you in response to something else. But my daughter has a very rare seizure disorder called dravet Syndrome. My husband and I work opposite shifts so one of us is always home with her. I know this is not always an option but it works for us. If you lived close I'd offer to babysit as I am well experienced with seizures of all types. I hope you figure something out soon!!
Tiff
www.JaslynParker.com
Maybe try to find a sitter through a local nursing school/department?
I agree with Laura P..............how much do you make part-time?
I assume your husband's grandmother watched her for free?
IF you take your gas money+car maintenence+time contraints+work clothes+meals at work+meals for kids+nanny/baby sitter salary......minus all this from your take home salary from your part-time job..........how much are you making to pay off the bills?
Perhaps alternatives as the other posters suggested.............babysitting yourself or finding a different job with better benefits or income? It is very hard to make this decision, and remember only you know what is best for your family! Good luck!
This is such a heart-wrenching situation and I really feel for you. Since you asked for advice I will give mine knowing that it may sound glib to others. I think as you said that if anything ever happened to your child and you weren't there b/c you were at work you would never forgive yourself. By the time you pay for a nanny that would have the experience and training sufficient to assure you not to worry you probably wouldn't have any money left over. So working would be a wash. Your son needs you now. I would do everything possible to be with him.
Hi, Can you hire a sitter or a nanny with Exp. in handling kids that have seizure? That's the only thing I can think of, you will always be on stand by if something really happens. I been home with my daughter for three (3) years, longer then planned, only b/c I don't want to pay for daycare/sitter... so we cut corrors and make ends meet b/c I say to myself, my child comes first, BUT this fall I'm going back to work b/c I'm ready and my daughter is older and needs to be around other childern, but my life is different then yours. I understand it's hard, but I tell myself it's not forever and my kid comes first. Good Luck! I'm sure it will work out.
Is there any way you can do your job virtually? Then when you r husband is home studying, you could pop in for some face time, etc? Can you pop in at night? Do they know you and your work well enough to trust that you'll work it out? You may be surprised that someone with a big heart who really understands may give you a chance. You may have to think about the risks. You can always ask ?????
Hi! I saw your post and wanted to share our experience with our oldest daughter who had also been initially diagnosed with complex febrile seizures that started at 6 months old. We went 2 years believing these were febrile seizures caused by fever (although like you, she really wouldn't have much if any of a fever) and that she would outgrow them. Finally, we were with our pediatrician and went over how many seizures she had (I think she had about 9 in that 2 year period) and he said, this just doesn't sound like febrile siezures. He referred us to an excellent pediatric neurologist, Dr Cynthia Stack, at Children's Memorial in Chicago. (If you are closer to Indy, I am sure there are excellent pediatric neurologists at Riley's Children's Hospital.) She had another EEG performed and she diagnosed our daughter with "seizure disorder" which a long time ago was called "epilepsy" but they don't like that name anymore since it is viewed negatively by laypeople. (Policically correct even in the medical field!) Anyway, she was placed on seizure medicine (Depakote Sprinkles) and the seizures stopped. The main reason for seizure medicine, as the doctor explained, is to avoid having too many seizures or seizures that are too lengthy (she told us they should not last longer than 5-10 minutes) so that the child does not get hurt from falling, choking, etc. We learned that you do have to be careful to not allow over medication to occur as there can be side effects but if you make sure the does ends up being just enough to stop the seizures but not to make the child groggy or not him/her self, then you are doing great. Dr Stack also believed that with a child's brain, the medicine could help to "teach" the brain how to not have mis-firing of the neurons - - mis-firing of the neurons is what a seizure is. The electrical impulse that goes from one neuron to the next goes too quickly and cannot make a good connection, and this causes the seizure in the brain and then the convulsions in the muscles of the body. Anyway, we tried a few times to wean our daughter off the medicne (maybe once each year) but the siezures came back. That is until about age 6. At that time, we were able to wean her off the medicine and she has not had seizures since. She is now 13. We were told that maybe when she hit puberty that the changes in her body could cause her brain to start having the "mis-firing" problem again and seizures could start again. Fortunately, she has hit puberty and no seizures. I don't know if our story helps you but I encourage you to quesiton your doctors that give an easy answer that it is just febrile seizures and even if a doctor does recommend medication, stay on top of that decision and don't allow over medication or long-term medication wihtout occassionally trying to wean teh child off the medicine. Best wishes for your child and you!
Have you tried seeking advice/referrals from the doctor? That may be a good place to start. Otherwise I would try to stay home. I wish you luck in your search.
Hi, the best of luck to you and your family. You have to do what is best for YOU and YOUR family. I totally understand that you need to work (both financially, and probably emotionally, for your own well being). I truly feel that everything always works out the way it is supposed to. I am sure there is someone out there that has experience with the needs of your child, and that you will end up being very comfortable with. Heck, maybe there is a support group of some sort that you could swap time with??? Then it could save you on $$$ and both Moms would feel comfortable?
The best of luck to you and your family....
I'm just going to be the devil's advocate here and present a few things to think about since I don't know your whole situation.
1.) How much do you make part-time that you can afford to pay a sitter? How much per hour do you make compared to how much you will have to pay the sitter and then take your part and subtract taxes and fees.
2.) How much do you spend to work? Food costs, clothing costs, gas to work? Food for little man?
3.) Who can better care for your little man outside of you or family?
I'm sure there is something I'm forgetting, but at any rate, my hubby and I decided that I would stay home with ours. I actually watch two for my neighbor behind us since she got to know me fairly well before asking. I worked at night part-time and got laid-off.
Can you not work at night part-time after you husband gets home?
There are always ways to cut costs...are you living at the bare minimum. My hubby and I scrape by, but it's worth it for me to stay home with the kids.
We shop Aldi, Costco (for a few things), and Woodman's...then Wal-mart for incidentals.
We leave lights off during the day.
We open windows in spring, keep thermostat at reasonable temps and just dress appropriately.
We don't eat out.
We rent movies from redbox for $1.
We don't have cable or satelitte...that's about $60 or more a month alone. And then we don't have all that garbage coming into the house rotting our brains and those of our kids. Boy the things we get accomplished since we aren't sitting in front of the toob for an hour or two everyday.
We don't have cell phones...actually we didn't until my mom put me on her plan for $10 a month.
We have the cheapest land line service available.
We don't spend huge amounts on birthdays and Christmas. We spend what we are able to save. And we get very creative. The girls don't ask for much because we don't have tv to influence them...they appreciate what they get and get excited about the tiniest things.
We buy clothing staples that can be mix matched and we only buy on sale or clearance at outlet stores or places like Kohls, Sears,.....
We don't spend money of activities, but find creative things to do with the girls like fishing (no need to buy a license if the we don't fish...the girls don't need one), the library has lots of activities, Woodstock theatre has great matinee prices, there are tons of things if you research it.
That's just a few things we do to get by so I don't have to work. When there is a will there is a way. Believe me it can be done. I think your son would be better off with your care and supervision...he will be your first priority and he won't be at a sitters because they have other children and responsibilities. That's not disparaging them, but telling the truth.
Hello Michelle O.
What a dilemma. Especially since your job is a source of joy for you as well as your family. I guess the question I have in regards to your part time job is do you need your job for health insurance or does your husband carry the insurance?
You sound like such a great mom with experience with children with special health needs - did you ever consider staying at home and maybe providing child care for a couple other children or even a couple kids who need before and after school care? As you have experienced, it is sometimes difficult to find consistent, reliable care. Especially if you child needs a little extra attention. Your local child care resource and referral agency could offer you lots of support in terms of technical assistance, start up equipment if you needed it etc. Also, if the families income decreases significantly there are supports you may be eligible for. Illinois AllKids program has a rebate program for parents who have private health insurance through their job for their children. It helps you afford the private insurance. Also the Women Infant and Children's Nutrition Program has very generous income eligibility guidelines - this program can really help the food budget and children are eligible until the age of five.
Hi Michelle,
We are having a presentation about our business at Hyatt Regency Woodfield, 1800 E Golf Road, Schaumburg, IL 60173 on Saturday October 23, 2010 at 10:00am. It is a free event. Just come and hear about it. No selling. No pressure. I promise, you will not regret it. Call me at 847-287-7868 if you are attending. Thanks.
Shahina
I went through the same thing as you. My oldest son had the seizures. His would happen when his fever rose rapidly, and he had high fevers as well. It was not unusual for his to spike at around 106. He is 15 years old now and a tall, athletic, healthy, smart, happy boy. I know the feeling when they are having a seizure is the worst thing I have ever gone through. They do outgrow it, mine did before he was 5, but it is still the scariest thing to see happen. I stayed home with my boys as long as I could and do not regret it at all. I thought we could not afford it either and did not think we could pull it off, but we did. I was surprised to see how much we could cut out and still live comfortably. It can be done if you are careful about it. The only people I trusted to watch my son were the grandparents and aunts/uncles. By the time he reached kindergarten, the seizures were over. I would try everything possible to be able to stay at home as long as you need to. Also to consider is some of the advice about working different hours than your husband. I really sympathize with you because I know the feelings you have, and I can honestly say I believe you will be much better off staying at home if at all possible. We weren't able to shop much, take vacations, go to movies, go out to dinner very often, but we didn't care. We did not live poorly, just frugally, and it was so worth it.