An Honesty Post: This is just one of the more difficult challenges I face as a single #Autism Parent

When Emmett was approved disability benefits, it was at the very first attempt because he definitely qualified.  I was so relieved because that meant that I could worry about financial things much less each month and I could instead focus on more important things.

I thought that I would be getting some breathing room and be able to focus more on getting back on my feet, building up this site and creating a source of monthly revenue that would make me less dependent on outside assistance. I couldn’t have been more wrong.

Once Emmett’s paperwork went all the way through the system, I received a notice from Jobs and Services that our food benefits would be cut drastically, as a result of Emmett being on disability. 

As a single parent to 3 kids, I was receiving about $468/month.  I was excused from the outside work requirements because I’m Gavin’s sole care provider and that’s 24/7. All his doctors wrote letters, including the , explaining that as a result of Gavin’s very complicated mental and physical health, I’m required to be his 24/7 caregiver. 

Just so we’re on the same page, there was no other practical, working option to filling that 24/7 caregiver role.  We explored every option available and this was the only thing that even mostly worked. 

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It’s easy to stand back as say hire a nurse, have family watch him or insurance should pay for something. These are all possible solutions to immensely less complicated problems.  Whether you believe this or not isn’t relevant because I know what I went through trying to figure this out. 

Anyway, even with the food assistance each month (which I’m so grateful to have had available) I still had to supplement it with whatever cash I could come up with.

Trying to feed 3 growing boys is expensive in general.  Throw in , food allergies, major related feeding issues and the cost skyrockets.  I know that’s tough to understand if you’re not living it but that’s the truth. 

I could easily spend $600 or more on groceries every month and that’s just trying to maintain food in the house that the boys would eat.  I’ve ended up having to visit food pantries.  I’m not proud of it but it’s what I needed to do. 

Since Emmett’s been collecting SSI, we’re down to about $100/month in assistance and I’m still grateful for that.  No, I don’t feel entitled and I’m working very hard to be as self-reliant and possible.  It’s also important to know that one of the reasons I can’t do a standard 9 to 5 is because I suffered a major back injury carrying someone down a flight of stairs when I was on an EMS run. 

I’ve lived in constant pain since about August of 2001. Walking is the only thing that helps me to find relief from the pain. This is why I’m never standing still and I’m always pacing. 

No, there were no benefits available to me.  It doesn’t really a matter because that was 15 years ago.  I’m not lazy and I’m not looking to mooch off of the government or your tax dollars. 

There’s a great deal of stigma attached to government assistance and the people on it.

The truth is that many people do abuse the system.  Not everyone does though.  Some people have to swallow their pride and ask for help because they have no other option.  That’s the case for me and many other families like mine out there in the world. 

Until you are in the trenches, trying to hold your family together and Autism becomes involved, it’s impossible to truly appreciate the entirety of the impact, a child can have on every single aspect of your life.  We love our kids and so we do whatever we have to do.  That’s just the way it is. 

Basically what’s happened in my case is that rather than getting some breathing room from Emmett’s SSI, it almost puts me in a worse position. I know that sounds weird but here’s why. 

With the addition of Emmett’s SSI, I was going to be able to keep up better with bills I haven’t been doing so well on, like utilities for example.  I was going to be able to supplement our grocery budget and finally gain some ground. 

What I didn’t expect was that we would loose most of our existing food budget and I would now have to supplement it will almost all of the new SSI income.  I wasn’t ready for that and have now found myself in a place where I almost wish I never applied for his SSI benefits in the first place.

We aren’t even a week into April and my budget is gone. I have three weeks that I now have to figure out.  The boys needed clothes this month and that’s not cheap but it had to happen. 

Please don’t misunderstand the intended message here because I’m not complaining.  The point of this rather uncomfortable admission, is to help people understand some of the reasons behind my struggle and at the same time bring to light something that impacts more families than just mine. 

My exact situation may be unique and a bit extreme but the same principle applies to many other families like mine. 

Autism and is so incredibly complicated and challenging.  When a family applies for benefits in the US or at least Ohio, no one cares or takes into account that are involved.  In my case, I was granted a work outside the home exemption (which I’m grateful for) but that’s about it and even those are only for extreme cases. 

Aside from loving my kids, everything about being an Autism parent, especially a single one, is unbelievably challenging.  It’s absolutely worth it and I wouldn’t trade my life for anyone else’s but it’s very challenging. 

I know I set myself up for ignorant comments (like the ones I’ve been dealing with today already), by share his part of my life but I also know that it will help other families to recognize they aren’t alone. 

I’m not looking for pity or attention either.  I simply want to help put my life, more into context.

I don’t feel bad for myself but I wish I could do better by my kids.  The truth is that my ship will come in.  Turning this site into a means of providing for my family is slowly beginning to happen, especially with your help.  I’m getting more inquiries about ad space, sponsored posts and I have some amazing partnerships being built right now. 

All of these things take time and so much of mine is spent just dealing with the daily challenges three kids with Autism/Fragile Health can bring to the table.  I’m also fighting my own demons as well.  isn’t my friend and I’m still grieving/trying to move on from the unexpected collapse of my 12 year marriage. It’s a lot to deal with and I’m overwhelmed but doing the best I can, even though I know it’s not enough.

I hope this comes across the way it was intended.

You have the power to help not only my family but countless others as well.  Simply sharing my posts, engaging in conversations and visiting the amazing sponsors I have, as well as the ones in the works when they go live, makes a huge difference.  This doesn’t cost you a thing and you will help me keep my efforts moving forward, while growing this into something I can better support my family with…  ☺

For more details about how you can make a difference, click here and give it a read..  ☺



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  • BJW

    That is hard, Rob. Trying to juggle money etc. Get one government bennie, then another is cut. I don’t completely understand it, as you are still living in poverty and have 3 disabled children. I imagine you’ve talked to the Jobs and Services people about this. You’re going to come through this.

    Becky

    • Thanks Becky… I will get through it, I’m just hoping to open people’s eyes to what real life can be like for many files like mine.. ☺

  • Kim Gebhardt

    Do you at least come out ahead on the ssi vs food benefits? You mentioned that you used to get $468 for food and now you’ll get about $100, how does that compare to what you’ll receive in disability for Emmett? I know you were hoping to have the financial noose loosened, but if ssi is even $600, you’re still a little more in the black, right?

    • Correct. SSI is $733… Technically, I’m in the black but in reality it doesn’t make anything any easier. I know I’m not explaining this well. When I had the food benefits before Emmett’s SSI kicked in it was essentially money that only used for food. I couldn’t pay the utilities with it or get clothes for the kids. I was many times not paying bills because I needed to supplement that with cash because we would come up short.

      While I’m getting the $733 now, I’m in a position where I have to choose between the things like utilities, clothes and other living expenses that I’ve gotten way behind on or buying groceries. Before I didn’t have to make this choice… Does that make sense? So now if I have to choose between keeping the electric turned on because they’re here to shut it off or going grocery shopping, it’s a much more difficult situation. I didn’t have a choice before.

      I didn’t expect this. I felt immediate relief because I was finally able to make payment arrangements and get caught up on things the kids needed. Then I was notified about the change and only had one cycle to adjust. I also had to recertify within the last few weeks for the food benefits and so I didn’t really no for sure what was going to happen until I was processed and approved. I wasn’t able to really figure anything out.

      Kim, it’s been a rough day and I’m not sure if any of this makes sense.

      • Kim Gebhardt

        I understand your train of thought, but I feel like you’re not looking at it clearly. When all is said and done, you are still $400 ahead of where you were 6 months ago. I realize that because of the lost food benefits you now have to choose between food and utilities, but you’re still ahead of the game. I agree with tannawings- put $500 in an envelope and use that for food only. Then take a step back and see where you might be able to trim things up a bit. I know things are super tight for you, but just yesterday you made mention of paying the monthly fee for the new security system and earlier this week you were talking about the online magazines for the kids. It might be worthwhile to sit down with someone and have them take an impartial look at your numbers and work out a budget for you. I think money has you to a stress point where you can no longer step back and say “I have $XX per month, and these are the bills which MUST be paid before I can do anything else”.

        • Jimmy Rock

          I agree with Kim. More money coming in monthly can’t be a problem. The problem lies in figuring out how to allocate it, since the restrictions on its use have come off. I understand that this is a new, unanticipated “problem” that you haven’t had a chance to adjust to yet based on decisions you had already made, but it’s definitely one you can get a handle on. You now know what money is coming in monthly. It’s more than before. This is a good thing! Budget it the best you can and you should be in a better spot than before. Sounds like the right direction to me…

          • Jimmy Rock

            …although I do get the immediate problem that it puts you in…just putting a positive spin on the overall circumstances…

  • Shari Murphy

    I had the same thing happen, Rob, when my daughter started receiving her SSI. It’s ridiculous. They give it to supposedly to help the child with the disability, but they take away a benefit that is supposed to be for all of you. So you end up not much ahead of where you were to begin with financially.

    • Thanks for sharing. It’s frustrating isn’t it….

      • Shari Murphy

        Extremely. As a single mom of 4, it felt almost like we won the lottery when I found out she was eligible for SSI. Just to be able to get by without so much struggling. As you said, I’m grateful for what we get, but it seems like, really, what was the point of going through all of the paperwork to get it, only to have most of it taken away basically, because now it has to be relocated to the food budget.

        • While it doesn’t fix anything, there’s comfort in knowing it’s not just me…..

  • tannawings

    It does suck and I do understand. Before SSI, the 448 could ONLY be spent on food. But you have to remember you are a bit ahead. 773+100 =883 883-468 = 415 more than before.
    I hope you dont think this is a bad comment, but could you put the 448 (or 450) in an envelope and put it just toward food? Granted you could spend more, but thats what you had before. Maybe you just need to approach the problem differently.?
    I fully understand this, and it’s just a suggestion. I have also dealt with this.
    These programs are great, they save our butts, but basically youre still in poverty. Life turns into a puzzle.

    • You’re fine. I totally understand what you’re saying. I just wasn’t prepared for it and so I paid bills that needed to be paid. I bought clothed that needed to be bought for the boys and so I’m not off to a good start. Next month will hopefully be better because I’ll be prepared.

      Unfortunately, once I get off balance, so to speak, it’s like a domino effect and hard to recover from.. Does that make sense? You’re right I think about approaching this differently. I just need to find my footing… ☺

      • tannawings

        It makes perfect sense really. Oftentimes when folks with not much get anything it is easy to fall into the rabbit hole. Or rather try and catch up to life and things that stress them out. (like bills)
        Next month will be better. You will know whats coming.

        • Thanks. The kicker is and I totally forgot about this. I recently got a letter from SSI informing me that they over paid Emmett’s first claim and I either pay them roughly $500 or they will simply reduce his monthly payments by $75 until repaid. Sigh

          • Kim Gebhardt

            Even with $75 being taken out, you’re still ahead by over $300/month. And it will only take 6 or 7 months to repay that, and then it will be like getting a raise.

  • Gavin gets SSI but not . As far as the security system is concerned, it’s free because they want to partner with me. I’ll explain more about that later. As for child support, there is none. It’s complicate but no, I have no help. There’s no order cause we’re still married. That’s complicated as well and I’m unsure of how to proceed with that. Honestly, it’s not really even on my radar because I’m too wrapped up in simply trying to survive and keep the kids above water.

    This site is capable of providing what we need, without anyone donating or anything like that but I have to stay on top of it and I’m spread so thin at the moment. I’m going to have to cut some things loose.

    Thanks..

    I know the child support thing rubs people the wrong way but it’s difficult to explain without saying too much and until the is final, I don’t know how that will work out.

    • BJW

      You shouldn’t have to explain. I do hope you can get on SSI but I imagine you know all the ins and outs. My health is such that it is impaired, but I fear from what I hear that getting SSDI (that’s what I would qualify for) would be almost impossible.

      People who don’t live with disabilities or the disabled can’t understand how hard life can be. My husband’s health is compromised but he is still in good enough shape to work full-time. If not, all of us would have already taken a whack at SSI/SSDI. They imagine we can easily “do” stuff even though we don’t have enough SPOONS. Or have this damn elephant on our backs.

      • Thanks Becky. I’m familiar with the SPOONS reference. It’s tough because has been denied twice but I think the issue is more to do with records. They keep saying there’s nothing to verify that he’s struggling…

        I need to sit down with a lawyer because they will facilitate the gathering of records and will only take the case if they feel they can win. They get paid out of the back pay…

        • BJW

          I might have to go that way. But last year, I decided it would be easier to work part-time than to apply for SSDI. I MAY need to rethink.

          I have a friend who got a law firm involved. Yes, in the end they take quite a bit, but it’s still worth it to get a settlement and money going forward. I don’t understand why has been denied. Seems like being on the spectrum would be enough. *sigh*

  • MB13

    Rob, when you did your food stamp reauthorization, did they count all of your SSI (including the amount that you were overpaid)? For example (pulling numbers out of the air here), if you reported $100 in SSI for a month, but $40 of that was an overpayment, the food stamp people don’t have any way of knowing that you should only have gotten $60, and they might have reduced your benefits based on the original $100 payment. Does that make sense?

    • I know exactly what you mean. I hadn’t thought of that but I’m lot sure how that would work. Something I need to look into it. ☺️