June 9, 2013 (long) when xxx was first diagnosed I was called into the General Manager's office and asked if I were going to be requesting Accommodations now that my son is "ill". I looked at these men like they had five heads. And said.. "I HAVE NOT REQUESTED ACCOMMODATIONS" and left. Then I reported it to corporate HR. I was the HR manager at the time. Over the next few years, little by little, it happened. I was removed from the succession plan. I was criticized for coming in late, but never praised for staying late. We were self insured and Daniel was on my insurance, and I saw the claims. They would make write action plans on how we were going to reduce claim expenses, very well knowing my son at the tme was the biggest one. So many exasperating things happened. Then I got pregnant with Thomas. Still intending to work, because aside from management the rest of the company was awesome. I had incredible reviews and raises. Went above and beyond you know. All the while stressing about xxxxx. Had many friends and great colleagues there. They were NOT happy when I was pregnant again.
This woman xxxx who was alot older than me, and DID NOT believe that women should work when they have small kids, blatantly would bully me and say how wrong I was to be working... putting my kids in daycare.. etc etc. And it was like that. I went on maternity leave after baby #3 and suffered a bad post partum depression. I needed a few more weeks to recover, and my boss was ok with me being out longer. Then that same old bag started calling me at home. saying she was "wondering how I was"... all the while my little spies would tell me she was talking smack about the fact that I wasnt there. I had an AWESOME assistant at the time, who was keeping me in the loop. Finally, I returned to work, had hired a nanny.... things were good. But Senior Management was snubbing me. We had an aquisition, and by all due process I should have been conducting the due diligence, and working on the integration and termination situations with the company we bought. But they gave the entire project to that lady. She was the HR manager at another sister company. She despised me by then. Non stop criticism that I was a working Mother, and worse that I was not caring my special needs child.
I tried to be as professional as I could, but one day she barged into my office with our VP and they put me on "suspension" I had to leave at that moment. They said they were investigating some issue with the Accounting Department. I had NO IDEA WHAT THEY WERE TALKING ABOUT. But again, my spies out at the coprorate controllers convention had outright heard them talking about their "plans" to get rid of the HR manager. And it included the cost of xxxx's medical bills. And three days later, after basically NO INVESTIGATION TRULY HAPPENED. I was called into HER OFFICE at her creepy other company and the VP said that a "memo" was found in the accounting managers personnel file. My name was highlighted on the bottom. It said that he was not in agreement with accounting practices. They said he told them that he had talked to me. That was a blatant lie. I had never seen the memo. Anyone could have put it in there. Even my assistant had never seen the memo. And that VP looked at me and said.... sorry....we are terminating you, you can go across town and clean out your office. Now mind you, I really did not have much to do at all with the front office accounting department. They set me up. They also fired our controller. But when I went to clean out my office, the mean discriminating old witch was waiting for me with boxes. They gave me an enormous separation package...WAY MORE THAN WHAT THEY WOULD OFFER IF THEY FIRED YOU FOR CAUSE, THEY EVEN MADE A MISTAKE AND PAID ME EXTRA ON TOP OF IT, AND THEY NEVER REQUESTED IT BACK, SAID THEY WERE JUST GOING TO LET IT GO... they said that I could sign and agree not sue or not receive a penny. I went to a lawyer. She spend alot of time with me. I had hoards of evidence, because from the moment xxx was diagnosed as disabled, I started documenting. BUT... she also said it would cost me alot of money and emotional struggle, and did I really want my job back?? I talked it over with my husband, signed the papers, took the money.... And the HR Manager ME, who loved her job, and her family, became a victim of discriminatory firing. I tried for a year to get another HR job, almost did many times. And then, my son needed major hip surgery. It was all too hard. I had spent a year job hunting and being with my kids....and I had a reality slap. THEY NEED ME HERE. Daniel needed me there. His needs were ever changing, and the number of doctors was growing. The corporate world has NO PLACE for our need for flexibility. And mine surely didn't. If I could do it all over again, I would never have gone into Human Resources. There is no way now that I look back that any place would have been flexible enough for the hell that I went through with my son. It has been ten years since this happened.
June 9, 2013 This post caught my attention. I have two children who are five and two. Our two year old is medically fragile and we have spent most of her life in the hospital. My husband and I both work, but I have always earned the main income. Last year our daughter was so ill in the hospital with severe feeding intolerance and on TPN that I had no choice but to take a medical leave from work. I am currently working part time from home to cover bills, but my employer is not able to extend any further work situation from home. My boss told me last week that I needed to choose to between a full time job in the office or no job. I completely understand the employers necessity. However, with a special needs and medically fragile child I do know how long I will last working ten hours a day four days a week. I will try my best to work full time and put everything in Gods hands. He has been my guiding light. The other issue I face at work is that the girls in the office who have taken some of my responsibilities during my absence do not want me back. I was told last week that if I returned, hours would be cut from one of my colleagues. I feel that they are bullying me. When I walk into the office, they treat me as if I don't exist. My boss has no interest in me returning either, other girls in the office have told me. It is sad. I am exhausted just working part time from home. We have days that are very overwhelming too. If I get out of the house it is to go to Children's Hospital for appointments or Walgreens for medications. I wont give up for my girls, and I will do the best I can. I have been blessed in the last two years and every time we think we are facing the impossible, things work out just fine.
June 9, 2013 we are also a single income family, my husband works in construction and gets as much overtime as he possibly can which sometimes means an extra 20 hours a week with him leaving 5:30 in the morning and returning 8:00 at night. My lil man wont stay with anyone else, wont even let anyone other than me feed him so at this point there is no choice of me returning to work, as we had originally intended when I was pregnant. Also, as a result of my husband working extra to try to keep us afloat we just received a letter from SSI saying they were cancelling my sons benefits and want us to pay back the past year that he has received, not that he got a ton but we dont have that kind of money. Just kills me that if you are willing to work for it they dont want to help you... my husband could just as easily turn the overtime down and we could just collect government money but we dont deal that way. We also have a 3 yr old daughter who started preschool this year and they have found ways for me to put in volunteer hours so that she could receive a 50% scholarship. WIC also wont help give him the types of food he needs, for example since he turned 2 they said he has to be on low fat milk, but he is underweight so he needs the fat from the whole milk... after telling him that they just took the milk off all together. I spend countless hours fighting for things for him with these places and with the insurance company... just doesnt seem fair that these kids have to fight hard enough yet alone having to deal with being denied that what can help them.
June 9, 2013 big (((HUGS))). xxxx has as baby sister who is almost 6 months old now. I worry about what it will be like for her. I know she is loved and we will always do our best to balance their lives, but I also expect it to be difficult, especially as they get older. And I know what you mean about what finances may look like on paper. And God knows how you can have been in a financial position in the past, and are now stuck trying to juggle things because your circumstances (like losing a job) have changed. And you are right, with the current real estate market, it would be so difficult to change your home situation. I pray for you and your family.
June 9, 2013 i dont have a life, we are isolated at home or separated by the hospital, i feel like crap worn out, and my husband work work works. ive been doing tis 5 months. hope we get skilled nursing care so i can get out once a week.
June 6, 2013 lifestyle whats that??? lol...ours went away about 5 yrs ago lol..now its just the basics .
June 6, 2013 It's also the long term can/if my child can live on their own, if not who will be there when I'm gone? The fear that without us as parents nobody will care for them in a respectful way. It's not just financial it's all encompassing, who will make sure they have the correct med? Who will remind them to eat healthy, who will carry the burden when we are gone?
June 6, 2013 Oh and by the way, I don't want to hear any complaint from people who have to pay a hefty college tuition. We pay college tuition rates year, after year, after year....
June 6, 2013 As you are well aware, it puts an enormous financial burden on the families. We had a $2000 prescription rider on the family for any one person. XXXXX blew through that in a month and a half, and then it was all out of pocket for us. And when you pay 20% of hospital bills when they are so high, we are talking thousands upon thousands of dollars. Of course this puts an extreme strain on the couple. We were lucky enough to make it though still loving each other...but we had some really rough years there ourselves. And XXXXX only lived to be 4 years old.
June 6, 2013 I agree, you deplete everything you have to do the best you can for you child and you envision yourself as an elderly couple at 95 (if heaven help us we live that long) years old and working because you don't have a retirement.
June 6, 2013 I think our costs have about evened out with medicaid helping. Although we do have to travel MUCH more for our day care. Overall cost with our 4 year old to date would certainly be in the 7 figures, if we didn't have insurance or were under-insured and then Medicaid we'd be hundreds of thousands in debt by now. We miss a lot of work which causes some instability. Once in a while I feel like my whole life is a house of cards and the next puff of wind is going to send it crashing down. We manage but it feels like we're surviving not thriving quite often. Our 4 year old boy is 100% disabled, immobile, g-tube, zero developmental benchmarks, has regular seizures and prognosis is terminal. BUT... He is so sweet and beautiful, never complains, smiles, he's an angel.
June 6, 2013 in my case, my childs father passed away when she was one month of being 5 yo, I paniced big time, she draws social security survivorship from her dads death now, I have since remarried to a wonderful man whom thinks of her as his own, his world literalJune ly revolves around my child. because of my new husband, I don't have to work thank you lord for that, although I do work as an office manager once a month for extra money and to get the office file system and scheduling organized. I spend (this week) 3 days driving 2 hours one way to the childrens hospital, an average of 2-3 times a month same distance to appointments. Which the gas prices these days is killing my wallet there, the county is helping with gas vouchers, nothing from the state uughhhh If it wasn't for my husband now I don't know what we would do, no family support at all, and we live check to check as well, not eligible for food stamps or anything, therefore hubby and I go without just so kids get what they need...
June 6, 2013 exactly, the way SSI works is you cant ever be comfortable or they assume you dont need the assistance. but look at how expensive EVERYTHING is for these kids. we live check to check, are always behind with bills, live without alot of things, its just hard, theres never any comfort at all, because you just never know. and it takes FOREVER to get things covered by insurance most of the time. it shouldnt be this difficult to be us and live the lives we live. theres too much red tape and too much bureaucracy to deal with.
June 6, 2013...My first financial wake-up call was when I was looking for 10 hours a week ABA for my 3 year old son. Insurance covered nothing and I was quoted $800-$1000 a week for 10 hours of in-home ABA. AND there was a 6 month waiting list. I don't know anyone who has that kind of $ around.
June 6, 2013 My husband and I have just spent hundreds of thousands of dollars creating our own group home for our son and two other young adults with Autism. We started when he was 19, finished when he was 21. Between this son and our other two kids post high school educations we can't catch our breathe financially.
June 7, 2013 ...Indirectly financial... We decided not to have a third child because we don't know to what extent Dom will need our resources both financial and time. We want to make sure to give him as much as we can!
June 7, 2013...divorce.I work part time time to help cover some costs of living but can only work part time because of the time needed to dedicate to appointments and follow up (education/medical) for my son (with pmg) - not counting what my other children (2 of them) require. My daughters lives have been affected by their brother, on a day to day basis and my son's father is in denial.
June 7, 2013 It has crushed us financially. It has been the downfall of my marriage.
June 7, 2013 I was talking to a mom the other day and she said that anything that really is effective isn't reimbursable. Im a music therapist and I fight with insurance all the time. When it comes to reimbursement, CT is behind the ball! As moms we just have to continue to fight for our kids no matter what. I hear you though, it strains the family, the marriage, and the pockets.June 7, 2013 My marriage is stronger having a special needs child~we realize it takes both of us to raise him!!!! Financially~wow where to begin~we decided that it was best if one of us stayed home~so there is so much we struggle with but very fortunate that I have a very good job with great benefits. Not sure we will ever be out of debt but we are happy! PM me if you would like more info.
June 7, 2013 We can barely afford to pay our mortgage and will probably lose our home. This has destroyed us financially and emotionally. Without support from church, friends, and family we would probably be on the street somewhere.
June 7, 2013 before xxxx was born, I homeschooled all our others. That left a lot of money free. When she was about 14 months, I started having panic attacks about juggling it all. So we made the extremely difficult decision to put them in school. The high schools in our area are not good, so we put the two oldest in a wonderful private Christian school. It has been amazing for them, but the cost is staggering for us. And because of all the incidental costs of raising Sami, that don't appear on paper, we make too much for financial aid.
Emotionally, last year I had 4 children in 3 different schools, all with their activities and volunteer needs, most of which I can't do. So I completely understand that mommy guilt.
My son is almost 16, already has his own car, which needs work that we can't afford. My daughter babysits a lot, and has to borrow a phone because hers broke and we can't afford a new one. That same daughter is turning her few pairs of jeans into shorts because she really needs new clothes, that I can't afford. The kids want to do activities, like piano, voice, dance, sports, that I dole out like gold because it all costs money.
xxxx and I don't go on dates much, or getaways at all. We look for free things to do as families.
I recognize that we are so blessed compared to others. We have enough to meet our needs. There is much less than there used to be and there is much more stress. Money stresses me out. Spending quality time with everyone is stressful too.Emotionally, last year I had 4 children in 3 different schools, all with their activities and volunteer needs, most of which I can't do. So I completely understand that mommy guilt. My son is almost 16, already has his own car, which needs work that we can't afford. My daughter babysits a lot, and has to borrow a phone because hers broke and we can't afford a new one. That same daughter is turning her few pairs of jeans into shorts because she really needs new clothes, that I can't afford. The kids want to do activities, like piano, voice, dance, sports, that I dole out like gold because it all costs money. Luke and I don't go on dates much, or getaways at all. We look for free things to do as families. I recognize that we are so blessed compared to others. We have enough to meet our needs. There is much less than there used to be and there is much more stress. Money stresses me out. Spending quality time with everyone is stressful too.June 7, 2013 Finances- we just accept the fact that we will die with no money and that's okay. We are 54 and 47 with 8 children. We spent our equity from our home to adopt our 4 children and we have very little if any money. This was a choice and we feel that although money is important its not the end all. Giving children a family is more important. (our SNs kiddos would have never survived if left in the orphanages) Money-its over rated. I think folks would be shocked if they knew how little we have. Given our ages and the amount of children I think folks think we have money. LOL
June 7, 2013 My biggest challenge is being able to make life for my other children as normal as possible.Of course it is not like others, as we, as parents usually have to divide and conquer. Its hard for us to both be there for our other childrens events at the same time. This is the one thing that I find difficult. On the flip side...my other children are growing up with a compassion that most other kiddos don't have. That's the challenge we face daily. (aside from the stress of watching my son struggle with issues like breathing) I currently have 6 younger children living at home as well as one adult child still in the home and "time" to date each one individually has become a tougher thing. (usually my adult son gets jipped) As far as hubby and I, we are grateful that we both put our kiddos first.I do miss our time alone but its very bearable when we are "together" raising these kiddos. I think having SN child/children teaches our other children that "its not always about them" since we live in a very self centered world. Not sure if this is what you arelooking for but this is what I thought I could share. PS I am VERY tired often from lack of sleep. Ice tea is my best friend since I'm not a coffee drinker! LOL
June 7, 2013 My daughter passed away at the age of 5. We were financially devastated and bear the pain that we could never get what she needed in order to have a better life. She would probably still be with us.
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