As far as bad days go, I’ve personally had much worse. That being said, today is really not going to well. Thankfully, Elliott appears to be better and has returned to at least somewhat eating.
Lizze however, isn’t faring so well.
This weather essentially has her unable to more, without being in excruciating pain. She’s truly miserable right now and there isn’t anything I can do about it.
Work hasn’t picked up as quickly as expected and we are quite literally running on less than fumes at this point. The silver lining being that our major utilities are in mostly good standing. This could definitely be worse, that’s for sure and I’m ever so grateful they aren’t.
We’re in one of those periods where I had to steal gas from the lawnmower just to pick the boys up from school.
Truthful, I don’t know of how we are going to make it the next couple of weeks. I think that when you’re in a situation like mine (and probably many of your as well), you tend to spend a great deal of time in survival mode.
Survival mode is when things are so bad or your resources so depleted (physical, emotional or financial), that you can literally only worry about the most basic needs required for physical survival.
Unfortunately, I find that we spend far to much time living in survival mode, not that we can really change that right now.
I was wondering how many of you out there, either have lived in survival mode or are currently living there now? How do you manage? Are there any tricks you can share? What is survival mode a result of in your situation?
It’s my belief that providing such insight could prove useful to those struggling right now or those simply struggling to understand why life can be so difficult for a special needs family.
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reonyea hang in there. I completely understand.. 🙂
We’re in survival mode at the moment, have been since we moved a month ago. Bills are being paid on a really rare basis, with the exception of rent, since there’s this crazy thing we need to do called ‘eating’. My benefits claim is still in process. Bluh.
Survival mode is where we have been for far too long. Our youngest is supposed to be in 8th grade this year. He was in a short term intensive behavioral unit last spring but there has been negligible improvement in the succeeding 7.5 months. Managing his health and behaviors are a full time job for more than one person. Forget trying to manage home, job, family, your own health. There are no day treatment programs here or any treatment programs for that matter. We are struggling to maintain minimum routines without any chance of repairing the near daily additions to the list of broken/damaged items. The holidays just throw more wrenches into the routines.
We will be doing an FBA soon and an assessment for ADLs with the hope that these will garner DD services interventions while the family still has some degree of sanity, however small, remaining. Our son’s case manager believes the states’ Technical Assistance division will be of help by developing a behavioral support plan and interventions. My question is, “Who is going to implement this and manage it?” Am I going to be in charge of this also? If so, then how will that change anything? He’s bigger than me. He lacks internal incentives to motivate change or behavior. Extrinsic motivators are self limiting and do not promote permanent behavior/attitude changes. How is he going to be persuaded to engage in everything he doesn’t want to do when he is perfectly pleased to be a child? As it is now privileges must be earned and he chooses not to earn them.
I feel like we’re being slowly devoured by autism. As our son gets bigger and older the services are neither bigger nor more comprehensive. I wonder how many families are invisible.
Pooshnc i am so glad for you. it sounds like you had a plan and are working the plan. i have thought of going to school for the same reason (the money) even though i have to pay it back. But that means I need to go back to scholl ugh. I think I will check on that again. I just don’t remember being that smart academically. I don’t know if i didnt try, didnt care or just did enough as a teenager to get by. I will see how the new job goes and go from there
erinsgems thanks for all the suggestions for real. sometimes we don’t think of things that we really can cut. also, i would be in worse shape finanically than I am if I had no heard of Dave Ramsey (financial guy that is down to earth, has books and radio show) when i lost my job i didnt have 6 months of expenses saved up (can you imagine) but I had three. It took me 3 moths to get my new job now waiting on first check to get on track. i am looking at stupid coupons right now (i dont like couponing but it does help). i can see where you are having to make decisions regarding income, work or not work etc. I dont know where you are from but in the US you can be disabled and not collect money but take advantage of the medicaid or medicare that comes with that. are yall able to do that? I believe in what you were saying about keeping your mind busy and even on someone else so we can get by
BeckyRogersWiren rjones22 You have helped me just by listening. You are right, my family does love me and I am so grateful. It seems like my friends and family are having a hard time as well with money and illness. What I really think is everyone has problems and some money cant fix that is for sure. I am glad you are hanging in there. I am better off than my post sounds so don’t worry. Bills are paid and will be paid and i really probably wont have to get more gas. I am sorry about my snap too, but i will make it work as I am grateful for anything. What I am really worried about is obamacare (which i need) but know that it will run out of money. My kid alone on private insurance has spent 5 million to cure his leukemia w/ a bone marrow transplant with complications and work on his autoimmune diesease. With so many sick people, as a country I don’t know what we are going to do. But great news is that once I get my first check they will keep coming and I will be able to get on track. my work will pay for my insurance but then the family coverage (I just need one on it) is $1200. I told her in an email real nicely that I needed that in writing from the insurance company so i could apply for additional help. she let me know the other day she is checking into a different insurance. Yes!!! I am sorry all four of you are chronically ill. I can’t even imagine. I have one son that is not sick at all and then i have my other one that is in good health (and grown/working a fabulous job) and I am in good health. It is just all this paying out of pocket going to the doctor is outragous. I have to go to the dr myself so I can get my meds refilled. I am going to call and see if I can skip this time but give me my scripts. Not sure though cause it is a law thing. If he has to see me I will tell him (as I told my sons rheumatologist) give me the cheapest appt and write the scripts for him. My sick kids rheumatologist charged us only $50 and gave him the flu shot for free!!! if there is a silver lining i will find one. Your family is in my prayers and thank you for caring.
rjones22 …wish I could help you! I have so many friends that need help. Those of us who are “managing” but not flush are the ones who care the most, trying to help when it even hurts us. It makes me super angry that SNAP got cut for you all. I try to do my part to change but due to illness, am usually limited to certain avenues. So sorry to hear this. Our survival mode seems positively wealthy compared to so many of these stories. (And we’re not AT ALL wealthy, and all 4 of us are chronically ill and/or disabled and barely managing.) You all are doing so much with so little that it is amazing! You are wonderful and I’m sure you love your family. God bless you!
i am in survival mode right now. $10 to my name (again). I pray i dont have to get more gas this week. my snap has been cut like everyone elses. my health insurance doesnt kick in for another 60 days so i am paying out of pocket for sick adult kids meds, working on the pharmacutical companys to help, i also sent a certified letter of the information that social security wanted since i mailed it have havent heard back, that was six buck i didnt have, i do get paid on the 25th (first paycheck from new job, yeah i did get a job) but you know how it is as soon as rent and car are paid that is done with. i do seem to get a lot done in survival mode i think because it is a survival tatic. like laundry, you see it, you wash it and you put it away so it is something tangible that I can see get done. by putting laundry away really means throwing it on the couch lol. the bigger the pile on the couch the more i can see I have done. i try to make a list of easy things that have to be done so i can “check them off” such as checking the mail, take the garbage out, everybody got fed, meds were dispensed etc., so I will have some successes. We are successful parents we are just lost and tired and overwhelmed.
Thank you for this post! A breath of fresh air when I was feeling choked. Truly insightful and inspiring!
I know how you feel we are about to loose our home I just got a job in Jos. A. Bankos Clothiers, Inc. distrubution center I live in constant pain and have for yrs now my knees and spine are both shot to hell but my husband cant pay the bills on his income so i do what i have to do he and i both have anxiety and depression he has been hospitalized 3 times in 2 yrs for blood clots and i had a cancer scare 6 months ago
Our survival mode isn’t so bad financially. But with 3 sick people and one with Asperger’s syndrome, I end up cutting corners everywhere. Right now there is clutter on surfaces, floor could be cleaner. Windows…not as clean as I would like. I have fibromyalgia and here I have insomnia, oh well. I work enough to wind me up and then can’t sleep. My husband is still working at 64 because without his income, we couldn’t do it. He has fibromyalgia too although not anywhere near as bad. Rob, when I read your blog I feel so awful for you all. You need so much more. Our society really doesn’t value the sick and disabled very much.
Have you tried applying At Walmart or retail seasonally
Not only is with my son autistic but his dad, my husband is physically disabled, but choosing not to draw disability at this time…if we didn’t run our own business allowing us wacky hours because we work when my husband’s pain is low…but being self employed cuts out a lot of our qualifying for help in other ways and our income changes from month to month…we have a pretty strict budget that we use to regulate the income variances…I preplan meals and buy only those items for the week…occasionally the extra jug of milk is needed or we need more bread…but that is built in to the budget along with the bills(we just paid our last medical bill off after 6 years Yippee)so I will put extra grocery/bill money away in our “OH CRAP” Fund…and that has saves our bacon from slashed tires to our son breaking his glasses to stolen backpacks…you have to be dedicated to the budget and see it as your life line…sad we have to depend on money so much, it runs our lives if you live check to check…pinterest has amazing links to inexpensive healthy food ideas and most of them work! http://www.militarywivessaving.com/how-to-feed-your-family-on-50-a-week/ and http://melissafallistestkitchen.blogspot.com/2011/09/freezer-cooking-slow-cooker-meals.html these ideas are great…we have also gotten rid of cable and opted for Netflix at 10.00 a month since my kids prefer movies…we only have cell phones and have the internet…libraries let you check out movies and have reading sessions for kids for free…Its actually fun to get creative and search for ways to save money…so many sources…its like a challenge and you feel a sense of accomplishment when you succeed…and it can help keep your mind busy and off of dwelling on the problems…cause you are making solutions.
CassieBoland Pooshnc Thank you so much for sharing your personal experience with survival mode. I’ve done some of those very serious things before. 🙂
Don’t be afraid to ask for help. Luckily my family hasn’t been hit too hard lately with financial issues, but when we have, we accept help when offered…groceries from a friend, diapers if needed, baby formula (I had a good friend who was a nurse in a hospital nursery and she hooked us up when money was tight.). I also made A LOT of meals that could be frozen or thrown in a crockpot. Super cheap stuff like chili or casserole. I made a tuna casserole for literally $2.00….
The one thing that helps us out the most in our survival mode is my stiphen checks. Yes, I’ll admit that I went back to school mainly for the money I get every quarter from my student loans. And yes, I know I will have to pay that money back…at some point because they give you 10 years to repay student loans after you graduate, unless I decide to jump back in a get another degree in something else. In that case my loans won’t come due until after I graduate again. My degree is a bonus from it but honestly we needed the money. That few extra thousand every 12 weeks is what keeps us from going under. And by me going back to school for a degree it enabled me to qualify for Medicaid, food stamps and energy assistance. It also provides us with a nice tax break thus putting more back in our pockets. But even with all that, sometimes it isn’t enough because our bankruptcy payment is so high. Bankruptcy was a necessary evil in order to keep the house.