#Autism: How I went from public service to public assistance

There is a HUGE stigma attached to things like Medicaid and food stamps. Part of the reason for that is that these services are commonly abused. There’s not enough oversight and people who probably shouldn’t be getting services get services. People are upset about this and rightfully so. I see things on Facebook all the time about this.

People say things like “Wish I could call off of work today but I can’t cause to many people on welfare relying on me“. I’ve even seen things like “I’m off to work because someone has to support your family”.

These are said by people I know. People I have considered friends. It makes me feel sick inside to know that’s how they really feel.

What if one of these “friends” ever found out that I was one of “those” people or we were one of “those” families? Would they still think that way? Would they judge us just as harshly?



All I know for sure is that reading these things greatly adds to the feeling of shame I already have. I haven’t been honest about this for fear of my family being judged even more then we already are.

It just sucks on so many levels. My hope is that by sharing our story maybe people will think twice before they rush to judgement. Maybe people will be able to finally realize that there may be more to the story than meets the eye.

#Autism: From public service to public assistance

My family hasn’t always needed help to survive. I used to be a firefight/paramedic and I was good at my job.

I LOVED being a public servant. We weren’t rich but we had decent insurance, a roof over our heads and food on the table. I was able to pay our bills and sometimes even take my wife out to dinner. So how did I go from public servant to public assistance? In short, “life”. Life happened.

While on a call I was carrying a pregnant woman down a steep flight of stairs. I had to pick the foot of the cot up high enough to keep her level because she was hemorrhaging badly.  It was a stupid thing to do on my part but it was necessary and for the right reasons. In that brief moment, I did what I had to do. However, I blew out my back and ultimately ended my career. It was my fault and I have never regretted doing my part that day. I saved someone’s life.

I worked as a paramedic for a few years but since that day I have lived in constant pain. That was 10 years ago.

Since that day my wife and I have had 3 beautiful boys together. I love my wife and kids more then ANYTHING in the world but they aren’t without their challenges. My wife and I are parents to 3 special needs boys. All 3 of our children have been diagnosed Autistic. Our oldest is 12 years old and also diagnosed with schizoaffective disorder, PTSD, OCD, ADHD, Sensory Integration Disorder, reactive attachment disorder, primary immunodeficiency, marked autonomic disorder and struggles with PICAHe has been in and out of psychiatric hospitals for last last couple of years. He suffers from auditory and visual hallucinations and has been for many years. We have been through some VERY dark times with him and recently had to move him out of the house because of such extreme behaviors. It simply wasn’t safe for us if he stayed.

Our middle child is 6 and has Aspergers and is VERY high functioning. He struggles with severe anxiety, sensory issues as well as with ADHD. He has significant asthma and was just diagnosed with tree nut allergies.

Our youngest is 4 years old. He is Autistic and had severe food allergies requiring a tightly controlled diet. Thankfully he has been food allergy free since the summer of 2012. He was extremely speech and language delayed so even basic communication can still be a struggle at times. He has made amazing progress but it’s been a lot of hard work. All 3 of our boys have MANY sensory issues that require great sacrifice to accommodate.

Our kids require more than what we can possibly offer on the very best of days. Literally every minute of every hour of every day is completely consumed physically and emotionally caring for our kids. We literally drive hundreds of miles at times just for out of town therapies. I have drive over 100 miles per day, just taking the kids to and from 3 different schools. It’s an impossible task that all of the hospitals, doctors and specialists involved constantly tell us “I just don’t know how you do it”.

Is this enough to justify our need for public assistance? Because there’s more.

My wife is also chronically ill. She was diagnosed with Fibromylgia and chronic fatigue syndrome in 2005. She also suffers from severe reflux, chronic daily migraines as well as arthritis. Basically on any given day she is in excruciating pain all over her body. Her skin hurts to touch and her migraines last for days and sometimes months at a time. She is currently suffering with a migraine that has lasted almost all of 2012. That’s right, an entire year.

Read This  One thing that my child with #Autism wants you to know

 In 2010 she was diagnosed with idiopathic hypersomnia. This is a disabling sleep disorder with no known cure. She would sleep 14-18 hours a days every day if I let her. No matter how much sleep she gets she’s never rested and always tired. Her pain has gotten to the point where there are days in which she requires a cane to walk. She’s 32 years old.

We have had to make great sacrifices and many difficult decisions in order to make it this far. For the last few years or so now I have basically become a single parent. That’s not meant to be a insult to my wife. She is just limited by her health right now and can only do so much but she gives us everything she has and I love her for it.

Over the years I’ve literally lost my career and our financial security. Our main source of income is residual from a small contracting business I started a few years ago. I can no longer physically work the business but I still have a guy working for me. It doesn’t bring in much but we have managed to keep our house but that’s about it. Our oldest is on SSI so that helps some as well. We literally count pennies at times. We have no future at this point because we cannot keep this up forever.

To further complicate things, Lizze has just been told by the Cleveland Clinic that she must undergo an extremely intensive chronic pain rehabilitation program. This program is out of town, runs 8 hours a day for 3 weeks and at a cost of well over $30,000. This is the only thing left she can do….

We rely on Medicaid and food stamps in order to survive. I’m not proud of that. In fact, I’m ashamed that I can’t take better care of my own family.. I assure you that I beat myself up enough for this on my own. Your judgement is not necessary.

As uncomfortable as I am using these services I’m so grateful to have them. It took me a really long time to come to terms with having to rely on these services.

I’ve worked since I was 14 years old and always earned my own way. I truly hate having to rely on someone else for my family’s basic needs. It’s humiliating enough without having people give me dirty looks at the grocery store. So please understand that if there were any other way we wouldn’t be here.

Why am I sharing this?

I want to people to know and understand that while some people abuse these services there are many, many more who don‘t. I truly hope that people understand that there is always story behind every situation like this.

Just because you see someone using a food stamp card at the grocery store or Medicaid at the doctors office doesn’t mean they are “lazy” or “milking the system”.  You have no idea what their story is and judging them based solely on the fact they need help is just wrong.

Please try to remember that there are many families out there like mine, facing challenges every single day that most couldn’t even imagine let alone survive.

Believe me, if I had it my way, things would be different. Sometimes life happens and we have to do things we aren’t proud of or comfortable with, in order to ensure our families survival. Please don‘t judge because life is already hard enough.

In Conclusion

This was not easy for me to admit, let alone write about.  However, instead of continuing to feel ashamed, I’m choosing to hold my head up high knowing that I love my family enough to accept the help we need to survive.

Please, if you find yourself in need of help don‘t let your pride get in the way of finding it. Don’t worry about what anyone else will think or say. They aren’t walking in your shoes. Don’t be ashamed like I was. Be proud that you had the courage to get your family the help they need.

Please feel free to share your story. I know it’s not easy but you have nothing to be ashamed of.



 



  • KathrynRogers says:

    There should be no shame in needing help.  You have to eat, and your kids have to eat, people should stop being so freaking judgemental and walk a mile in your shoes.  Maybe then they would understand.  I’m suffering from Fibro/CFS and degenerative disc disease in my neck, I’m also lucky enough to be allergic to opiate based pain relief, so what I can take is pretty limited.  I’m also a single mom, child support is my only income right now, so if it wasn’t for a bridge card and medicaid, we’d be screwed royally.  I’ve applied for disability, so please say a prayer that I get approved…..

  • AlanaJulianaSheldahl says:

    Our chronically ill/ autism family story includes debt, bankruptcy, foreclosure,medical bills out the wazoo, an 18 year old on SSDI (as of recently), and a glass ceiling in a career.  I know some of what you speak about.  and I know that feeling of shame….especially when people who are friends get judgmental.

  • Kim says:

    As a fellow paramedic, married to a deputy sheriff/paramedic, who are parents to a severely autistic 18 year old son, first…please know you’re not alone. We feel your pain.  I was diagnosed with CHF in 2008 so I have been reduced to part time/casual because who knows if I’m going to feel well enough to work tomorrow.    We are crystal clear that we’d be in your shoes with one injury.  We see LOTS of abuse of the system here, but you are absolutely one of the examples of the ones who truly need and deserve it, and you have challenges I can only begin to understand.  You will also be first in line to change it when the right opportunity presents itself and you are able. 
    Keep reminding yourself, nothing lasts forever and you WILL get through today, this week, and this year, and things WILL get better.  I realize it’s easier said than done..but it can be done, too.  If anyone knows that the seemingly impossible can happen, it’s you.

  • malignantmom says:

    I know several people that make ignorant comments about people that use public assitance programs, but they don’t always know the situation before they judge. My son is ASD , A.D.H.D., S.P.D, O.C.D, and Pica, and if it wasn’t for medicaid he would not be able to receive the therapies that he needs. I have terminal cancer, severe arthritis, a couple of hernias, and anxiety disorder and with out medicare I could not afford to go to the doctor. I worked for many years so why should I feel guilty about collecting disability? There are many people that shouldn’t receive benifits true, but for those of us that truly have disabilities/ chronic illnesses why should we have to feel ashamed that we have to use government asstistance after having money withheld from out of our pay checks  all those years we worked to pay for it? I always worked even when I was first diagnosed terminal I worked for awhile. I am a single parent supporting a special needs child alone I can no longer work so if it makes me low class or white trash to be on disability and medicaid/ medicare then so be it. I have to take care of my child some how because he is all that really matters. As for all those people who look down on me and people like me just remember someday it could be a friend,  a relative, or yourself that might be faced with a similar situation so don’t be so quick to judge.

  • dotdash says:

    Government aid is merely the streamlined form of the private giving that most Americans do.  I don’t know anyone who would say no to a family in need, and yet, strangely, you get all this weirdness when the government is involved.  
     
    I would so much rather we (as a country) spent money to help people raise their children in loving homes than spending the money on drones that (apparently and unashamedly) kill afghan children.  
     
    (Insert incredulous comment about the priorities of our politicians here)

  • Amy says:

    My husband has a law degree, I used to be a social worker,  and through “life” we are also on public assistance right now… We wouldn’t survive without a housing subsidy, medicaire and medicaid, food stamps and social security.    I hate the stigma, but I can’t change my reality right now.

  • kathyrath says:

    God bless you for your sacrifices and your hard work.  All of us in the spectrum trenches need to pull together and support each other.  I am in a similar situation as KathyBrower– making just barely too much for assistance, but still counting change by the end of the pay period.  I am glad assistance exists for families like yours.  You deserve every bit of help you can get.  Usually those I see with public assistance in stores clearly need it, but once in a while I get befuddled.  Thanks to your post I will be more careful to not just judge on the surface.  Prayers are with you, especially this time of year with increasing cold and holidays.

  • KatMoody says:

    You know our story Rob, three kids with a rare disorder, autism, epilepsy and way too many other diagnoses to count; Jim’s severe health problems; my own Fibro still makes me the healthiest person in our house. I’ve been thankful to lesson my Fibro pain with massive changes to our diet, and I am blessed enough to be able to work online to earn a bit of money to help us out. 
     
    As my business grows I worry about the benefits we fought so hard on for the boys. Without their assistance, without my husband’s disability – we wouldn’t be making it because I would be trying to work 24-7 (unsuccessfully – I tried that for years and lost jobs because I had to leave to take care of kids and family). 
     
    I’m thankful to be looking forward to a day without SSI, by my own choice, but I’m scared by the same token – because it’s been a long, hard-fought battle to get as far as we have. And Public assistance was the only way we’ve made it. A lot of strength and perseverance, of course, but financially – I was one of “those people” and my family has been one of “those families.” I’d love for folks who are so judgemental to live a day in our shoes and then decide how “easy it must be to collect a check every month” — (that sentiment came from my own family, repeatedly.)I’m trying, we’re trying … to make it out of this suffocating web of public assistance. But our family needs us first, and sometimes that means we have to be able to accept help from wherever it comes.
     
    Bless you, Rob, for ALWAYS putting it forward with honesty!

  • KathyBrower says:

    Be happy you qualify for public assistance.  We make just barely too much money, and have 3 severely affected children.  They have autism, in addition to a multitide of medical issues.  We have no family.  Last year we heated our house with our oven.  Too much income for Fuel Assistance, too little for the Good Neighbor Energy Fund.  We cannot afford co-pays; we are running with one Epi-Pen for 3 kids.  It’s sad, but just the way it is.

    • rmagliozzi says:

      @KathyBrower Kathy, can you write to FAAN?The food allergy and anaphylaxis association? If you told them what you are going through, I am pretty sure they would be willing to provide free epi-pens so all your children have one. Heck, want one of ours? It’s an Epi-pen Jr. but if we have several and your kids clearly need it more than us.

  • jfurgreen74 says:

    Thank you Rob for sharing.  I know many families in the same situation and are not able to hold their heads high.  We also are in the same boat and it’s not better said than to simply say that “life happened”.  
     
    We were married 18 yrs ago, and had pretty decent jobs.  After 8 years of unexplained infertility we were blessed with an amazing little boy born 5 weeks premature.  As he grew we knew he would be different than other kids and as the years went on, discovered so many reasons why this child was so different.  We went on to have one more child 3+ yrs later, who is mostly (lol) nuerotypical.  Our oldest who is now 9 yrs old suffers with Autism, severe ADHD, panic and anxiety disorder, as well as physical problems like reflux disease.  Since he was 4 we have struggled with insurance to pay for therapies and medication that he needs.  It wasn’t until he got on the state health plan that nearly all that he needs to function on a daily basis was covered.  There was no way we could afford the things he needs to get through each day.  This new health plan has covered things like an intense day treatment to teach him daily living skills, medications to help not only reflux but also with panic and anxiety, as well as daily living tolerable.  But also covered in therapy and psychological service that we would in no way be able to afford any other way.  Since “life” has happened so intensely I have been unable to work and lived with my parents for a long time.  During that time we applied for food stamps as well as SSI.  Both of which we get now, and has made it possible to get our own modest place to live and I still stay home taking care of my boys the best way I can.  Each day is a struggle ( even now I struggle the constant humming, rocking, hand flapping, and very loud noises!) but I would not trade my life for even one of those days of infertility that I endured for so long.  I love my children and am blessed to be their mom, and have the opportunity to offer them so much through public assistance.  
     
    Thank you for also putting yourself out there and admitting that taking assistance is not a bad thing and should hot be a bad stigma for families like ours that really need the assistance.

  • JenniferWhynott says:

    I know that hrere are people that could not survive without these services. In our situation we cannot afford to have our children assessed or get them the care or therapy they need. While all of my children are high functioning in their issues and becasue of that they may not even qualify for a diagnosis because I have worked so hard with them to help them learn to cope with weaknesses and how to use their special strengths. A friend of mine who is in the same situation as me and I lament that we have helped our children out of a diagnosis. While I am grateful for the ability to help them in such a way, I also worry about their futures.  I have never had an issue with people using services. The issue I have always had is the people I see out there with their hair, nails, and make up done to the nines and their kids are wearing holey, raggedy clothes. These services are there to help people who need it and for those who use it properly, they should have it.

  • Mary Franzen Costello says:

    Every parent who sends their child to public school is receiving a hand out from the government. This is just one example of how None of us survive on our own. We all work to take care of us all as a whole. I’m glad my tax dollars are there to help, cause sometimes I get too wrapped up in myself to offer someone a hand on my own.