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 Family 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 Cleveland Clinic, 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.
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 Autism, food allergies, major sensory 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 special needs 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 special needs parenting 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 special needs children 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. Depression 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.. ☺