An Honesty Post: My special needs family and why I can’t “just go get a job”

Let me start by saying that I’m very grateful for everyone’s concern.  I think that it says a lot about our community when other wise strangers, can relate enough to someone’s life that they show compassion, worry and understanding.

Having said that, there are a few things that I need to clarify because there seems to be some confusion.

This likely is a result of me being uncomfortable discussing this subject for fear that it will come across wrong to my readers. I’ve said many times that I only share the financial struggles because without that knowledge, it’s hard to put some of what you read here into proper context. I also believe that by sharing things like this, it helps to raise awareness about one of the struggles involved in special needs parenting.

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While everyone’s situation is not as complex as ours, every family faces struggles and challenges.

Perhaps I wasn’t as clear as I should have been because I was more concerned about how I would be taken, that when I shared my thoughts,  they were a bit scattered and confusing.

This post is meant for the sole purpose of clarification and to address all the emails, comments and Facebook messages I’ve received over the past few days. Yes the topic is on our financial status. Yes I’m uncomfortable sharing the details and no, I’m not asking for anything from anyone.

First things first.  We have power and are in no immediate danger of losing it, at least for the next 30 days.  Thank you for your concern but there is definitely some confusion over this one piece of information and I apologize for not being clear on this matter.

Let me explain our situation and how we arrived here.

We’ve never been wealthy, at least not in the monetary sense. However, we were making ends meet.

There was one event that disrupted that balance and caused a chain reaction that began our downward spiral. That event was having our van stolen.  I bought a van that I knew would need work but was otherwise perfect for my family.  Unfortunately, I made a mistake and I trusted the people I bought it from. To say this van was lemon would be an understatement.

We had that van for just over a year and within that first year, we had $8,800 worth of repairs done.  The most recent repairs were made a few days before Christmas of 2011 and totaled $2,800. We had a large tax return coming so it wasn’t an issue.

However, on the morning of January 19th, 2012, our van was stolen as I standing about 10 feet away.  All three of the boys witnessed this happen and it was traumatizing for them.  This is when Elliott began to develop issues with trust and anxiety, at least as far as I remember.

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The van was recovered within a few hours but the thieves managed to total out the van in that short time.

In that moment, we lost our entire investment, still owed $2,800 for the repairs made a month earlier and now had no vehicle. Insurance reimbursed us to an extent and to be honest, I don’t remember the amount off the top of my head but it was far less than what we needed to replace it and far, far less than what we had invested.  We had no choice but to buy a new car.

It took every dime we had, our entire tax return and we had to take on a payment that we really couldn’t afford.  While I’m responsible for that decision, I knew that we had to have Gavin to many, many appointments that required reliable transportation.

I made the best decision I could in the circumstances that I found myself in.

Being self employed, we relied on our tax return to make it through the slow winter months.  It’s never been a problem before but at the same time, we’ve never been forced to absorb a financial loss quite like this.

I got behind on our mortgage and just about everything else.  For the first time ever, our utilities and home were in jeopardy, each and every month.  I sold off all of my possessions, with the exception of my phone and computer.  I did everything I could to keep my family above water. The busier months for our business helped us to survive but we never could get caught up.

In January 2013, we shut our company down because we could no longer keep it going in the current economy.  Our tax return went to keeping our house and making progress where we could.  During this period of time is when Gavin’s heath took a serious turn for the worse and he was admitted for his first few life threatening Autonomic Crises. We ended up with many out of town health related trips that all added up.

By summer of 2013, our house was in foreclosure and we had lost our natural gas.

Currently, we have managed to save our house and renegotiate the mortgage. However, we are still without Natural Gas, despite our many attempts to fix the problem.  Dominion East Ohio Gas made a mistake on our billing that resulted in us getting shut off, after they told us we were current.  They have admitted responsibility for the mistake but we owe the money, so they shut us off.  The current amount needed to turn it back on is around $800 and we simply haven’t been able to find help or come up with the money ourselves.

We are behind on our van payments and a few other things as well.

I have been working on a project that I will begin receiving a steady salary.  However, that hasn’t happened just yet and while I am deriving some income from this now, it’s not steady or enough to get us out of the hole.

We require roughly $2,000 to get the gas turned back on, save our car and get back on our feet.  That’s a lot of money for us but in reality, it’s not so bad that it’s impossible.  It’s a matter of keeping afloat until my salary kicks in.

Why don’t I just man up and get a job?

Now to address the question of going out and getting a job. Some of you understand, while others don’t.  Let me try and explain this once again..

It’s very important to remember that you can’t always apply a simple solution to a very complex and every changing problem.

For starters, until last week, at least one of the boys were home at all times.  While that has changed as of one week ago, the difficulty of our situation hasn’t.

Gavin is extremely medically fragile and requires routine trips to Akron Children’s Hospital, the Cleveland Clinic and we are currently planning to travel out of state to get him seen at John’s Hopkins. This may be Gavin’s best and only remaining hope.

This is what I’m working with as far as Gavin’s concerned.

Primary Immunodeficiency (continually worsening and requiring monthly IVIG Infusions)
Epilepsy
Severe Autonomic Dysfunction
Extremely rare Autonomic Crises (He is one of three known pediatric cases of this, according to the Cleveland Clinic. In fact, there has never been a child with with this condition, seen or treated by the Cleveland Clinic….. Ever)
Asthma
Ataxia Telangiectasia Like Disease (pending and the reason for John’s Hopkins)
Cognitive Regression
Speech Regression
Neurological Regression with loss of motor function (continually worsening)
Autism
PICA
Reactive Attachment Disorder
Schizoaffective Disorder
Bipolar Disorder
PTSD

Emmett just began school last week and is doing well.  However, Emmett has challenges of his own.

Autism
PFAPA (extremely rare fever disorder that typically has a cycle of 10 days on and 21 days off. This is accompanied by very painful mouth sores that last the full 10 days. These cycles disappeared late last year but made a return a few months back. The schedule now is irregular and unpredictable. During these 10 days, he cannot go to school.)
Sensory Processing Disorder (Very, very sensitive to just about everything.)

Elliott is far and away the healthiest of all the boys but in many ways the most challenging.

Autism
ADHD (Currently under a doctors care and on medication.)
Asthma (Under control and under a doctors care.  Also medicated.)
Extreme Anxiety (Easily Elliott’s biggest challenge.  He is extremely, extremely anxious and has been diagnosed with Generalized Anxiety Disorder and is in therapy for and under a doctors care. )
Food Allergies (Elliott is allergic to almonds and is not allowed to consume anything that has to do with tree nuts. This has caused Elliott to fear eating and is made worse by his anxiety.)

This is quite a bit and difficult on a good day to manage.  However, what makes this even more challenging is the health of my wife.

Lizze has survived a physically and emotionally abusive marriage, only to spend about 7 or 8 years in court, trying to protect Gavin from the very same abuse.  This was very ugly and done inside a corrupt court system at first, before it was finally removed and we succeeded in the appeals court.  Everything is a matter of public record so all of this is easily provable to those that doubt me.  However, you will have to do the leg work on that.

Lizze’s health began going downhill about 6 years ago now. These are her current health challenges and she’s seeking treatment for almost everything at the Cleveland Clinic.

Acid Reflux
Fibromyalgia (Extreme chronic pain, that is very difficult to treat.)
Hypersomnia (an untreatable sleep disorder that requires her body to need about 14-15 hours of sleep per day, as apposed to the 6-8 hours of sleep that most adults require.  There is no combating this and if she tries to fight this, she will literally fall asleep doing whatever she’s doing.)
Chronic Daily Migraines (her current migraine has lasted for over 2 years now and has not responded to any treatment.)
Gastroparesis (Literally means paralyzed stomach. This results in severe nausea due to the fact that her stomach doesn’t push food through to the intestines properly. She can’t eat without getting sick.)
IBS
Familial Tremors
Menopause (at age 32,the Cleveland Clinic informed her that she was officially inside of menopause. This complicates everything and is very, very difficult for her both physically and emotionally. It also leads to long term concerns as well because we’re told by her specialist that this has occurred about 2.5 decades early.)
PTSD (a result of her previously abusive marriage.  She’s in therapy twice a week and is on a waiting list for a new psychiatrist at the Cleveland Clinic that specializes in things like this for woman in menopause.)
Severe Depression (I think that’s understandable. She’s on medication and is in treatment but menopause has made this much worse.)
Severe Anxiety (this results in panic attacks and it’s attributed to her previous marriage and Gavin’s RAD related behaviors towards her. Again, she’s under a doctor’s care for this as well.)
Severe Vitamin D Deficiency (For some reason her body isn’t absorbing Vitamin D. She’s being treated for this as well.)

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While there’s way more to the story than that, this sorta sums up the challenges facing my family.  I want to make this very, very clear.  Lizze is not lazy and does everything she physically can for her family. Unfortunately, her chronic health issues are very limiting and while she literally pushes herself every day, it’s nowhere near enough to share the load.

Her health prevents her from driving about 99.9% of the time.  She is physically incapable of functioning without at least 12-13 hours of sleep a day.  She needs 14-15 to feel even remotely rested but that’s not always possible. This isn’t a matter of her just needing to suck it up. It’s a matter of her body simply not working right anymore.  I mean honestly, one person can only take so much. The depression is made worse by stress and constant pain.  The pain is made worse by the depression and constant stress.  It’s a vicious cycle that we have been unable to interrupt.

I have worked odd jobs.  I ran a successful contracting business with Ryan Homes (the largest new residential home builder on the East Coast) for well over a decade.  I destroyed my back and deal with PTSD myself as a result of my time as a firefighter/paramedic.

During my time as a paramedic, I witnessed and was directly involved in things that most people couldn’t imagine.  I’ve witnessed the traumatic deaths of children that I couldn’t save, among many others. After almost a decade in EMS, I finally burned out. I just couldn’t take it anymore.  Between the back injury, everything I had to do, the horrible things I’ve seen, the people I lost or couldn’t save and the constantly increasing needs of my family, I just sorta cracked.

A part of me just died.

This isn’t something that I ever, ever talk about because so few people would understand. I carry the faces of every person I lost and every child I couldn’t save with me, every single day of my life. I manage because I have to and I honestly miss my job.

For those that want me to just go out and get a job, I wish I could.  Doing so would certainly help to address some of the immediate problems and bridge the gap until my salary kicks in.

However, the problem lies in the fact that at this point, doing so would create other problems that I would not be able to overcome and would likely result in the loss of that job or me failing my kids in other, much bigger ways.

Right now, in many ways, I’m a single parent to three very complicated children. Not only do I care for them,  I’m taking care of my wife at the same time.  There is no longer the two parent dynamic in our home.  This is something that is outside of our control but we are working to resolve this by getting Lizze all the help we can.

I would require a job that would allow me to be there for very waking or sleeping moment the boys are home, drive the boys to and from school every day, pick them up early when there is a problem, take them to all their weekly therapies (of which there are many), answer and make all the phone calls needed for the boys every week, drive Gavin to his 5 hour long IVIG Infusion, take him to the ER in the event of the next inevitable Autonomic Crisis, drive Lizze to all her appointments (she has 2 procedures and 2 follow up appointments at the Cleveland Clinic this month alone), maintain the house, run all necessary errands, do the laundry, be there when the boys wake up in the middle of the night, cook and deal with all the other daily fires that need to be put out.

I need to do all of this with very little sleep and with taking the absolute least amount of time needed to keep myself above water.

Just getting a job isn’t a solution. I don’t know how else to explain this to those of you that don’t get it. I’m not complaining about my life, my family or the challenges we face. Being a struggling family isn’t something that we have the market cornered on.  Lots of people are struggling anymore. While our situation is unique in many ways, we aren’t the only family struggling.

I put more pressure on myself than anyone else ever could.  This is my family we’re talking about here.  It’s my family and it’s my responsibility.  It’s not the responsibility of the government or my readers to provide for us.  It’s my job and one that I take very seriously.  I will also say that when it comes to my family, providing for and being a responsible parent, doesn’t equate to just be paying the bills or keeping the gas on during the summer.

How do we currently survive?

We don’t survive so much as exist but that in and of itself is an accomplishment. The boys never, ever go without and they get to all their appointments, therapies and get all their medication.  They are clean, fed, clothed, have a roof over their heads and are most importantly loved to infinity and beyond.

Currently, we are on food stamps and state insurance but not all medications are covered.  Gavin’s on SSI but no one else qualifies.  We tried getting Lizze on disability but we were denied.  We sought legal counsel and it was determined that it wasn’t likely to ever work.

Yes,  I have a donation button on this site. It was put there at the many requests of my readers.  Yes, we get the occasional donation.  I’m both humbled and grateful for everyone’s generosity. It’s not something that I advertise, with the exception of the sidebar widget. It’s something that’s there if anyone wants to use it but there is absolutely no expectations or obligations.

I’ve recently changed my philosophy on the donation button as well. Beginning September 28th, this site and all its resources will become an out of pocket expense for me.  That includes the Lost and Tired blog and the My Autism Help Forums.  For the last two years I had prepaid for everything by squeezing it out of our tax return.  Previously, it was only around $200 a year or less for hosting.

As this site and the forums have grown, we’ve also outgrown 3 servers as well.  Currently, the monthly expenses will be over $100 per month and this basically covers the VPS server and basic security.

I am seeking donations to help keep this site and the support forums online.  The only reason I’m asking for this is because I know that I’m helping a lot of people, but at this point I need help to stay online.  It’s sort of a help me to help you kinda thing.

You can also help by simply sharing this site, any posts you find meaningful, my Facebook page or the My Autism Help Forums with friends and family.  The more people we reach, the more awareness is spread and the more people know they aren’t alone.  Increased traffic also helps this site to generate money off of ads as well and that can help to keep us online.  Also, donations will help to support my family as well, when they exceed the amount needed for server costs.

For those that are unaware, I’ve been working a project aimed at helping the Autism, Geriatric and Special Needs Community. We are in the final stages of getting this off the ground.  This project has turned into a job and will help to not only save the lives of children with Autism that wander but it will also change the lives of my family. This is what I’m referring to when I say my salary hasn’t kicked in just yet. It’s why I also say that we just have to make it until then.

Our biggest and most immediate obstacles right now revolve around getting the gas turned back on.  The temperature has been dropping into the 40°’s at night now and while the house is still warm because the days are warm, this will only carry us so far. We’ve tried everything we can on our end but have come up empty.  I have faith that everything will work out somehow. The stress is a result of not knowing the how or the when.  Make sense?

That’s really about it.

There will still be people that think I’m just making up excuses and I accept the fact that I will never change their minds.

I hope this answers everyone’s questions and clears up all the confusion.  Again, anyone is welcome to use the donation button but please don’t think for one second that I’m relying on you to do that. Nothing is expected at all.  If you like what I’m doing with this site, the support forums and are in a position to help with the server costs, that would be awesome.

Lizze and I are an amazing team. While our roles have changed over the years, we still manage to stay afloat.  I know that we will make it and when we do, I’ll be able to continue my work as well as support my family, the way they deserve.

Thank you all for your concerned comments, emails and messages.  I hope this helps to clarify everything as well as answer any of your questions.  You are always welcomed to ask about anything and I’ll do my best to answer those questions.  We have chosen to live our lives as an open book because we want to light the way for those walking the same journey and let everyone know that they are not alone.  We want something positive to come from our struggles.

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



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Vicki Hill Riedel

Have you applied for an AutismCares grant through Autism Speaks? With Gavin's recent issues, you meet the criteria, and they can give up to $1,000:
http://www.autismcares.org/site/c.mqLOIYOBKlF/b.4745901/k.BD21/Home.htm
Application is due by the 22nd of each month.

upliftingfam

PA12602 Because he has to have time for him to sleep as well.  And adding an overnight job will add years to your life. (been there done that)  I think Rob is doing what he has to do to take care of his family to the best of his abilities.

PA12602

lostandtired PA12602 You don’t sound like a selfish jerk at all, and I do have some idea what it is like to be sleep deprived because I did  it.
I was able to get some sleep after the kids went to school.  While we had A LOT of appointments and the occasional sick days, I could usually sneak in a few hours here and there.  I would also try to go to sleep really early (like when the kids did) on my days off, and make up lost time then.
I guess it was important to me on a personal level to make it work.  I felt it was important to set a good example for my kids, and get a little normalcy in our lives.  I was also fortunate, as my wife was able to get through her hurdles within a few years of me working midnights (I still think that the normalcy my working brought to our household helped her down that path).  That, coupled with the kids getting older gave me a little more relief.
Don’t forget…you don’t have it easy now!  What you may be sacrificing in terms of a regular sleep schedule, you will make up for in terms of additional income and the sanity that interaction with other adults will bring you.  
 Rob, like everything in life I’ve found that there’s very rarely an optimal solution…just the lesser of unpleasant choices :^)

upliftingfam

God bless you and everything you do for your family.  I hope everything gets back on track and I pray for a financial miracle for  you and your family.  As far as Lizzie’s disability request, I would seek another opinion on the legal.  I am currently working on a disability case myself because I am unable to work a standard job as well.  Denial is the first step and all SS disability claims are denied the first time.  I would be willing to discuss more in private but I don’t want to discuss my legal matters about my case online.

lostandtired

PA12602 Not to sound like a selfish jerk but here it goes anyways.  When exactly would I sleep? What happens if I don’t take care of myself or literally go 24 hours a day without sleep? You really have no idea what this is like do you? 
I already deprive myself of just about everything I can, so I can shunt whatever I can to everyone else. 
What you are suggesting is simply impractical and .  Sure I might last for a short period of time but what happens to everyone else if something happens to me because I don’t care for myself?

Alison Moorcroft

Some people really don’t have any idea how hard it is.

PA12602

I have to be honest, but after reading through that I still cannot understand why you can’t get an overnight job. Something after everyone is in bed, that get’s you home before the kids go to school sounds perfect!  It would get you out of the house and allow you to interact with other adults, while giving you the opportunity to earn some additional money to help your family.  You’d be surprised at how  widely available these jobs are….almost every organization needs overnights to do inventory, stock, etc.  It may not be prestigious, but a few hundred dollars extra per week I’m sure would be welcome.
Back when my wife was having problems, I switched to overnight shifts.  It was hard…I’m not going to mislead you.  There were times in the morning that all I wanted to do was go to sleep, and I instead had to go to an appointment, meeting, or someone was home sick.  But in the end, working off-hours helped us to survive.
I agree with all of your fans: you are obviously doing a lot at home.  I just don’t see the detriment in finding some type of employment when everyone in your house is asleep.  Even delivering newspapers would help get a little extra cash. Our newspaper deliveryman is an adult, that said he does better with salary and tips than he did at his job…and he’s done with work by 6 am!

dotdash

lostandtired
Done.  1 down, 29 to go…  come on, let’s join in.

Tammy McGann

Don’t even need to read it to know why you can’t!!! I mean, as much as you’d love to have the “free time” to hang out and gossip by the office watercooler . . . !

Holly Beaubouef Murphy

Don’t give up on Lizzie’s disability. My mom has MS and had to repeal 5 time. Go with depression and PTSD. I understand the burn out in EMS, I’m working on 7 years. There was a very long period I could not work because of Hayden, luckily he has made leaps and bounds over the past few years. But in reality as you well know he can regress. I work long hard hours and with Hayden’s neurological (seizure, Dyspraxia, brain injury, and left hemiparesis s/p CVA) , Cardiac (severe HTN and cardiomegaly), renal (cystic kidney disease ), psychological (severe panic attacks, agoraphobia ) and digestive issues (H Pylori, hiatal hernia, diverticulitis, IBS ) I too often feel like I’m going to crack…. so many doctors, therapist, procedures, medicine. I’m dealing with more than any parent should but you’re doing it times 4 !!!!! I have the utmost respect for you rob you are an amazing Dad!

Allyson L. Genthner-Thiessen

That must have been very difficult to write. I will keep you all in my thoughts and prayers. I also suggest Lizzie not give up trying to get disability…. it takes at least 3 tries on average and don’t even mention the Fibro, but focus on the other things, particularly the PTSD. Good luck on everything, I honestly don’t know how you keep your spirits up at all and am very impressed and humbled by your honesty and openness here.

Bek Weller

You have a job! A very demanding one without break/holiday/sick leave! You are a full time carer and anyone who wishes to debate that point is, excuse my language, a fucking moron!
You are doing the best you can with what you have to help support you family! (Not just financially, but emotionally and physically)

autumnjibben

Rob, I have tried so many times to look back on the comments from a while back. .. I had asked the question….. Have you looked in to IHSS (in home supportive services) I know that husband qualifies so did my son. ..I helps tremendously. … It would allow you to stay home and take people to the dr. Just putting it out there.

lostandtired

I just received an email from an anonymous reader.  They requested that I post this, as they would like to remain anonymous.  Thank you so much. 
Here’s the letter:
Dear readers and friends-As a special education teacher for children with autism, reading Rob’s account of his daily struggles helps keep in perspective the challenges my students and their families face on a daily basis. When our children come to school warm, well fed, and happy, it makes our job easier. But, when children are facing challenges at home, it makes our job that much more important. Rob and his family are currently without heat in their house, as the cool fall and winter nights quickly approach. I can’t think of a better way to immediately better the lives of these three boys than to make sure that they are warm this winter. I have donated $500 of the $800 needed to turn the heat back on. I am asking for all of you to help me by donating whatever you can to help raise the remaining $300. Just think, if only 30 people donated $10, we would reach the goal!
Sincerely,
A Lost and Tired reader

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