Things are getting dire

Things are getting pretty dire on our end and the stress can be cut with a knife.  My new job is taking longer than expected to begin helping my family.  One of the things I’m trying to do is find a new freelance writing job. Something that can sorta bring in a few extra dollars. 

I had a pretty decent writing job last year but they downsized and I, along with a few others were given the boot.

It’s really quite overwhelming to be faced with so many challenges and to have those challenges require resources that you don’t have and can’t get because those same challenges tie your hands behind your back.

I suppose that’s just part and parcel to the whole special needs parenting gig.

People that aren’t walking the same path, really can’t understand how complex and nearly impossible life can be when you have a chronically ill spouse, three boys with Autism and one of them being extremely medically fragile. 

Every special needs family is different.  Some have bigger challenges than others but none of us have it easy.

There is no easy solution and sometimes there’s no solution at all.

Often times I find that all one can do is have faith that things will somehow work out.

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It’s important that people understand these plights because families like mine need understanding and support.  By sharing my family’s experience, I’m hoping that it helps to raise awareness for special needs families in general. 

While not every special needs family will face the same challenges as mine, we all face challenges and we all need help and support. 

This site is managed almost exclusively via WordPress for Android. Please forgive any typos as autocorrect HATES me. 😉



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PA12602

EAwidmom I think Rob has said before that no one other than Gavin qualifies for SSI, etc.  That makes sense, since I don’t think anyone else has gotten medical documentation that shows they are fully disabled.   That’s why I think it’s even more important for his wife’s mental well being to become the family’s main focus.  Once she’s on her feet and can help out, he can provide for his family and the recurrent  stress over electric and utilities being cut off and living in an unsafe neighborhood become moot.
This was very similar to my situation a few years back.  It was really hard and I wouldn’t want to repeat it.  But, I was able to avoid hand outs and show my kids that hard work and perseverance can pay off.
Rob – could you even get a midnight job at a call center or superstore?  I know that Home Depot hires overnight to do inventory, etc.  What about going back into the paramedic field?  We have a lot of volunteer departments that hire paid EMT’s and paramedics to act as first responders.  They work a few scheduled hours, and respond to the 9-1-1 calls before the rig can get there.  Something like that would be perfect.

EAwidmom

KatMoody PA12602 This isn’t about blame or simply Rob getting a job.  This is about 3 children that need to be provided for, cared for and adaquately supervised and safe.  Lizzie’s health seems to be the white elephant on this blog.  While it obviously affects her, it impacts the whole family.  My concern for this family is something happening to Rob leaving him unable to do what he is for his wife and children.  The constant stress and chaos in this home, the possibility of that happening is great.  Lizzie is not in a state where she can provide proper care and supervision for her children.  If there isn’t someone else that can provide that these children would be removed from the home. CPS has been called once already.  If they got called back there and there’s no electricity or heat it would not be a good situation for Rob and Lizzie. In 3rd world countries people survive without heat and electric but in this country there is no excuse.  These are needs.  Dependable income is a must whether it be from government assistance, family, charity to help out in emergencies, someone coming in to care for the children and Lizzie while Rob works or any other legal means.  The blog, writing and his projects aren’t going to do it for steady income but can be a supplement. There are options.  Families all over make it work.    Physical health and mental health go hand in hand.  Financial problems and illness increase stress and chaos. Stress increases illness.  It all works together. I do not blame Lizzie for anything, but she is an adult in this house and the mother of these children.  She is a key in this family’s survival. It is vital that her heath is a priority along with contacting family or community services to get the electric turned on at minimum, and work from there.

EAwidmom

Rob, Gavin and Emmett at minimum should qualify for SSI benefits.  Maybe Elliot too.  That would cover your bills for basic necessities, along with medical, transportation to appointments.  You and Lizzie should also qualify for some type of Medicaid, food stamps and other assistance programs that may be available to you where you live.  Any money you do get from this site, writing, your project would help with other things.  Is this ideal, no.  There are rules and downsides and this isn’t a ton of money but if it meets your basic needs it’s what needs to be done.  
Lizzie’s health needs to be a priority.  If  anything, your sons need and deserve a reasonably healthy functioning mother.  Rob, you are 1 person.  You need help.  All the stress and strain on you has to be affecting your health.  What if you got sick, or God forbid you were no longer here?  I pray there are provisions for your children, or that you have family that are willing to step up.  Otherwise your children would become wards of the state if Lizzie could not step up and care for them.  My husband passed away from cancer 3 years ago and had chronic health problems, but he worked as long as he could and did his best to provide for and care for our children.  Depression, panic attacks, PTSD, migraines, GI problems.  I have been there. All of my children are on the autism spectrum.  There are days when it takes everything I have to force myself out of bed and do what I need to do for my kids. They are my responsibility, and I love them so I do whatever it takes. Sleeping all day is not an option.  My children and I do get social security death benefits from my husband, and the children do get a small amount of SSI.  We scrape by on this, and with some financial help from my mom when needed.  My family could get by on this until my kids turn 18 but honestly I want a better financial situation for them.  Right now lack of childcare makes it difficult to impossible to work out of home.  My focus is on getting my sons as functional and independent as possible, then going to school.  The ultimate goal is for me to be employed, to be able to keep the job and provide for my family while my sons are tended to with minimal worry or concern.
Your family is in a rough spot with some very complex issues.  You all need help now.  I pray you can get that. With that said, reality is that many things we need in life cost money.  There are 3 children in your family that need to be cared for and provided for.  There needs to be steady income and there needs to be physically and mentally healthy  adults in the home that can provide the needed care for your children.  There needs to be some realistic goals set and some initiative to improve your situation to get out of this rut.I realize this isn’t a cure all for all your families problems.  I am willing to bet if your boys could come home from school to a safe home where they knew the lights and the heat would be on without question, and mom would be awake, interactive and participating in their lives and reduce the chaos  it would help them feel better and behave better. These children thrive on routine, consistency, calm.  You and your family are in my prayers.

PA12602

graysmama Great suggestion!  Overnight and off-hour shifts were a god send to me (once I got used to the sleep deprivation).  I was able to work while everyone slept, and be home for the appointments, running kids to school, cooking meals, etc.  It’s nice to see others are on the same wavelength :^)

PA12602

KatMoody PA12602 I don’t put blame on anyone’s shoulders.  What I see is that she needs help badly.  If she has been diagnosed with depression, and is currently having severe panic attacks, SHE IS NOT GETTING THE TREATMENT THAT SHE NEEDS.  Untreated and under-treated mental issues can permeate every facet of your life, and can make existing conditions (like the medical problems and especially the fatigue) seem exponentially worse.  Unfortunately, it takes a great psychiatrist and a lot of trial and error to get the meds right, since everyone reacts differently to the variety of psych meds being used.  But you have to keep at it and not settle.

All I’m saying is that if you could get your wife on a path to mental recovery…make that your #1 priority…she may be able to contribute more time to the care of the kids which would positively impact everyone.  I am intimately familiar with psychiatric disorders (both professionally and personally) and I am certain that by treating her mental issues, she would be in a better place overall (including with all her medical diagnoses).
And I too have a special needs family.  My situation is also unique, and I am intimately familiar with the demands that can get placed on our shoulders.  When my wife was in a bad place, I had to start working overnights.  I had no choice…it was either work hard or lose everything.  I can remember days and weeks with little or no sleep, as I would come home from work and jump right into the day-time routine.  While I’m not looking to make this into a contest of whose got it worse, there are many of us out there that can sympathize with what you’re going through, and  have persevered through our own trials and tribulations.

graysmama

My heart goes out to you Rob.  My son is on the more mild end of the spectrum and probably has more in common with Elliot than Gavin or Emmett.  It may not be feasible for you but my husband and I both work at a call center that has a wide range of schedules. As bad of a rap as most call center get, our company (xerox) has been a lot more willing to work with us on scheduling to fit having a special needs child than other jobs have been. The pay isn’t the greatest but we are mostly doing alright. They need people 7 days a week at our site from 5 am to 11 pm. Currently we work evenings from 1-10pm M-F giving us mornings for our son’s therapy and doctor’s appointments. We are lucky and he is fairly healthy. He attends after noon preschool with the school district and we have childcare for him in the evenings.  I know with all of Gavin and Lizze’s medical problems our solution may not be one that works for you but I just wanted to share how we make it work. I know there are some customer service positions where you can work from home. I think Amazon is hiring for seasonal workers to take calls from home part time. I do hope thought that Lizze does get relief from her pain. My heart breaks for her being so ill all the time.

KatMoody

lostandtired aw buddy – as I said on FB we can chat some day – for now you just keep your chin up and you guys are –as always — in my continuing prayers.

KatMoody

PA12602 KatMoody no, what I see as disparaging is your assumption that you understand THIS special needs family because of your perceived understanding of one special needs family (I’m sorry I don’t know if you have a special needs child or not, actually). Regardless of how much Rob posts here you can’t understand everything about this family based on his posts. 
At this point it seems you’d like to put the blame on Lizze’s shoulders when in fact she is dealing with multiple health issues on top of the mental issues that come with chronic illness. Do you understand being in chronic pain? Have chronic fatigue and other symptoms every day, all the time, with no relief in sight? It’s easy to say – as if it should discount everything – that “it seems like her main issues are mental” — even if she had no health problems her mental issues would still be very real and difficult to deal with. 
Blithely telling someone else to get a real job when they work themselves to the bone every day to do the best they can – that’s disparaging. Getting a “real” job is the answer to the situation many special needs families find themselves in, because working at a “real job” requires the ability to show up on time, every day, with no outside interference. Last I looked, most families have additional appointments and surprise ones that crop up all the time. So actually, getting a “real” job is a dream many special needs families don’t have the luxury of having.

Patrixmyth

Rob,
When does your salary start, and what would it take to meet general milestones like turning the power on. I know you don’t want to appear to be asking for charity, but there’s nothing wrong with asking for help.  The thing that most of the people who want to help need, is a clear picture of what’s needed. I think you could really layout a model for how to deal with these situations.  Put together a plan. Post it on Indiegogo, and if you like, tie it to writing a book about the process.  I’m feeling extremely guilty of late, that I couldn’t help people who needed it, before it was too late. So, excuse my presumption, but it looks like you’re on an edge right now, and I’d like to help nudge things the right way.

lostandtired

@carlyoung PA12602 KatMoody I don’t mind criticism at all.  However, you are making some very big assumptions.  Our issues are not just a result of my wife’s health.  Assuming that panic attacks are a result of untreated mental illness is a rather bold statement. 
Yes she’s depressed and yes she has PTSD. Yes she’s in treatment 2 times a week to help.  However, her health is the most pressing.  She has gastroparesis and so she’s sick all the time.  She’s had the same migraine for over 2 years now as well as dealing with the chronic pain from Fibromyalgia and the sleeping is a result of a sleep disorder called hypersomnia. She’s 33 years old and in menopause as well.  I have to wonder how any people out there would be able to do better. 
Panic attacks aren’t conclusive evidence of anything other than she’s struggling with life right now for a great many reasons.  PTSD and chronic pain are not things that you can just get over. They are lifelong issues that can have a profound impact on one’s life.  
Sure, if she were healthy and able to do more, it would help. However, that would be a far cry from a fix all. 
Again, you are applying a simple solution to a complex problem and as I said, that doesn’t always work.  
I’m also curious as to your experience in situations like this.  While my situation is indeed more complex than most, many special needs families share many of the same struggles.

PA12602

KatMoody I really don’t see how suggesting Rob get a real job is disparaging.  That solution would seem to be the answer to many of the recurrent problems he is having.
I think Rob is doing absolutely everything he can.  The issue is his wife is unable to help out.  At first I thought it was due to her host of medical issues, but recently it seems like her main issues are mental.  Rob said that she had a few panic attacks the other day.  That’s conclusive evidence of untreated mental illness.  Panic attacks are not uncommon, but they are crippling if not treated properly.  I think he’s said in the past that she suffers from depression and is being medicated for it.  Anxiety goes hand-in-hand with depression, and requires a different medication. 
I think the bottom line is she should get rechecked by another psychiatrist, and maybe look for different meds.  It seems clear now that her central ailments including laying in bed all day and getting up after the kids are asleep (depression), and the panic attacks(anxiety) are something that should be treated ASAP.  Getting her help should be the family’s first order of business.  Once she can contribute to the household, Rob could  get a job that pays, and many of the family problems would be solved.
And Rob…as a side note, I don’t think it’s fair to infer that your problems are typical of a “special needs family”.  Some of your issues (such as meltdowns) are very typical, while other more pressing problems seem to have root in your wife’s inability to contribute and nothing to do with your kids condition.

Please don’t take this post as a criticism.  You have said that you like to know what’s on your reader’s minds, and this is how your situation is perceived by me.

foodiemama123

I understand completely. Like Kat, my husband is also disabled. Both of my kids have health problems (11 year old being evaluated for Autism/SPD/ADHD/etc and getting a feeding tube next week, my 18 month old has severe GERD and her reflux actually rises up and blocks her airway- she stops breathing at random times and throws up in the car all the time). Plus I have a ton of medical problems myself. I end up in the hospital at least once a month and we really only leave the house for doctor appts and food shopping. Between the 4 of us, we had 17 appts in the last 2 weeks, and we haven’t even started OT yet. This is normal life for us. I certainly can’t just go out and “get a real job”.

lostandtired

shawneerenee31 Thank you very much.  Things are rough for a great many of us. I’m just trying to raise awareness.  🙂

lostandtired

foodiemama123 It’s hard enough to even find a job in the first place right now, let alone one that will work with families like mine.  Thank you so much for understanding.  🙂

lostandtired

KatMoody Jharrigan lostandtired Thanks Kat.  On a complete side note.  I would love to put up an ad for your stuff on here.  It would be my way of trying to help.  Please let me know.  You do really good work and if we can keep each other going by doing things like this, I think that would be a great thing.

KatMoody

Jharrigan what a disparaging thing to say. You assume every child goes to school every day for those seven hours. What happens after you’ve missed enough work because of kids needing to be at an appointment or being sick? You lose the job. I have lost count of the number of jobs I’ve lost over the years because of this. My husband is disabled and I work online … as well as I can. I have some great clients and work my tushie off to do it, sometimes foregoing sleep to work a deadline around the kids. I don’t mind it, that’s what a parent does … but I STILL lose work because I can’t always work around the kids’ needs, much less those of my husband – I’m a full time caregiver 4 times over just like lostandtired is and I have my own health issues (like Rob no doubt does as well). 
It is very easy to judge others and find them lacking but how about taking a deep breath and thinking it through? Or even, dare I mention, having compassion for someone stretched to the limit who is still fighting, every day, to provide for his family?

lostandtired

Jharrigan I’ve explained this a million times already.  It’s jot that simple.  First of all, I’m not asking for anything from anyone.  I do get payed it’s just not enough to get caught up yet.  Writing is really the only option that will work in the interim.  Typically  I make $150/per 500 words.  
Lizze is not doing well and spends most of the day sleeping. She’s always sick and has 3 or 4 trips to Cleveland in the next 3 weeks alone for medical procedures. The boys have OT, PT and Speech beginning on the 10th. Gavin has to get out to John’s Hopkins, not to mention all his appointments at Akron Children’s Hospital.  I’m the only driver in the house 99.9% time and if I could find a job the would work around that schedule, I would consider myself grateful. 
Unfortunately, as I’ve said countless times, there is no simple solution.  We are working with several agencies to brainstorm ideas but we can’t find a solution.  
I have a job that is going to afford me all of what I need to provide for my family very well and help others at the same time. Right now my salary just hasn’t kicked in yet. 
The reason I share what I do is not for collecting charity. I’m trying to use my personal situation and experience to raise awareness for families like mine in general.  These are situations that are very difficult to understand. My hope is that by better understanding my family’s situation, others will be more easily understood. 
The reality is that sometimes a situation can be so complicated that there is almost nothing that can he done but lice from day to day or even minute to minute. 
As far as Lizze is concerned, she does what she can hut for all intents and purposes, much of the time I’m a single parent as a result of her health.  I have to drive everywhere, answer calls, do the shopping, manage appointments, plan the out of state trips, manage the house, all the weekly appointments and get the boys to and from school every day.  If the boys are home, I can’t leave the house for anything more than a quick trip to the store. 
Lizze’s health is literally that bad and until we get her back on her feet, if we even can, things will be this way.  
The donation button was placed there at the request of my readers.  Right now it’s there so I can simply keep this site online.   This is a very high traffic site and I’m reaching a lot of people.  Without the ads and donations, I simply can afford server costs anymore. 
There is no part of me that enjoys or benefits from our struggle.

shawneerenee31

Your family is in my prayers always Rob. Im so sorry that things are so rough right now. 🙁

foodiemama123

It’s really hard to find a job that can accommodate a family like Rob’s. Most employers can’t deal with an employee that has to work around dozens of doctors appointments each month, not to mention having to call out or leave early every time a medical emergency comes up.

Jharrigan

I really don’t mean this to be insulting, but why can’t you get a job? I mean a paycheck sort of job that’s not wriitng (at least until other stuff pans out?) stock shelves, work at a bank, etc. the boys are in school so you have at least 7 hours a day to work – Lizzie can fend for herself – it needs to be done. I know we disagree about things often on this site – but the charity of strangers is going to dry up – you might need to look for a more steady job. Why wouldn’t you even try?

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