July 14, 2019 at 8:06 am #19811
OK so I’ve got some more news: I might be getting a job finally, sorta, depending on what my mom decides. My mom currently works at a local inn but she has accepted a new job somewhere else so she put her two weeks in at the inn. Her boss flipped out cuz she has seriously helped the company and they don’t wanna lose her. So she offered to promote my mom to general manager, up her pay, and allow her to hire a whole new team for the company since the people currently working for them don’t actually do their job. My mom said she already knows who she would hire, and apparently I’m on the list! I wouldn’t be doing much since I can’t do much. But still its better than doing nothing. Its better than relying on gift cards from my grandparents every Christmas and birthday to buy presents for my family and whatnot. My mom doesn’t know what to choose right now and ultimately I want her decision to make her happy, but I also really want her to hire me. Lol. But then I also am really nervous. I’ve never worked before, I’ve never even finished school, and I don’t wanna disappoint her. Idk I’m scared and excited at the same time. But that leads me to my question: do any of y’all work and if so, how? If not, how do you pay for stuff?
Also, I went to see Far From Home with my nurse and her two daughters yesterday and it was awesome! The movie was great (I can’t wait for the next one!), I had a great time, one of her two daughters made me a necklace with my initials and Tom Holland’s name on it, we used a lift to get up to the movie area but the lift was blocked when we came out so one of the employees walked us through the Imax theater to get down so we talked to him about the movie which was hilarious, and my mom said she thinks I should do stuff like that more often. I’m so glad I went!
July 14, 2019 at 9:56 am #19814DeAnn RKeymaster
That sounds awesome Crystal. Glad you made it to the movie and had fun. Just keep an eye out for movies you’d want to see, and I’m sure it would be no problem finding someone to go along with you. I’m already looking forward to the next Jumanji. We went as a family last Christmas and I hear another comes out this Christmas.
I don’t think you give yourself enough credit Crystal. There’s a lot you can do. You just might have to think of unconventional ways of doing it. What type of position is it? When I was a teen I worked at a museum as a tour guide. I also worked in an office at a nursing home one summer and did data entry for an atv shop one summer. Everyone was always very accommodating.
As far as having an income do you get SSI? I forgot how old you said you are, but I would think you qualify. You get a certain amount per month and there are some rules and restrictions, but it helps. If you live with your parents you’d probably have to pay them rent out of it, but you’d still have extra spending money. It fluctuates with income, but after you’ve worked for a period you would qualify for SSDI. That’s more stable, but the amount you get depends on your work history I think. It’s all a bit confusing, but it’s worth figuring out. My next video is going to be on this subject.
Good luck! Keep us posted.
July 14, 2019 at 5:20 pm #19829
DeAnn is right. I think it’s good that you’re trying to be realistic about your abilities, but don’t underestimate yourself either. I’m sure your mom will find you something that fit your needs and interests perfectly! As far as money, I agree that you should look into social security. There are a lot of rules that you’ll want to read up on, and you’ll need to look at how getting payed will affect what they give you. Paying rent to your parents is also a good idea. I’ve done that for many years. I hope it goes well!
July 15, 2019 at 4:49 pm #19845Kevin SchaeferKeymaster
Hey Crystal! Glad you got to see Far From Home! I loved it too.
Just wanted to echo what DeAnn and Halsey said. There are still plenty of things you can do. I have a college degree, a full-time job, etc. I know many others with SMA who are in the same boat.
This is a broad subject, but let’s start with your interests. You like to write. Have you thought about applying that ability? I also have some book recommendations. One moment.
July 15, 2019 at 5:47 pm #19847Kevin SchaeferKeymaster
-“Laughing at my Nightmare” by Shane Burcaw
–“The Obstacle is the Way” by Ryan Holiday
–“You’re Never Weird On The Internet (Almost)” by Felicia Day
–“If at Birth You Don’t Succeed” by Zach Anner
These are some of my favorite memoirs and motivational books. Attitude is everything when it comes to this stuff. If you really think about it, you’ll be amazed by the things you can do. All of us here are happy to help you, and to share our experiences.
For now though, I want to encourage you to talk to your Mom about working with her.
July 15, 2019 at 5:54 pm #19848Ryan BerharParticipant
That’s definitely exciting. To echo the others, you should be able to receive SSI if you’re at least 18. DeAnn gave a good explanation, so I won’t repeat that, but I’ll add one thing. In the state of Oregon, you can’t save more than $2,000 in your bank account if you’re on SSI, even if it’s partially, or, for that matter, all money you’ve earned. However, there’s something called an ABLE Account which allows me to save more money—SSI or earned. Assuming you don’t live in Oregon, I can pretty much guarantee that the rules are different where you live. SSI rules are probably different, and there might not be an ABLE Account. If one does exist, it might be named something else. This is all incredibly complicated, but it’s still worth figuring out. SSI doesn’t go a super long way, but you could buy gifts like you mentioned, for example. I’m also curious, what is your potential position? I have three jobs for this company. Moderating this forum, columnist, and making a monthly YouTube video.
July 15, 2019 at 9:18 pm #19851
We have ABLE accounts in Indiana as well and it works the same way here. They’re becoming increasingly common across the country, so it’s definitely worth looking into! Good thinking Ryan! Can’t believe I forgot about that.
July 16, 2019 at 8:24 pm #19858
Wow thank you all so much! My mom ended up not taking the offer, which I’m kinda glad about. I mean, yes, it’d be great to work, but I just don’t really see how it would work out. I mean, I’m still doing school for one thing… I was always sick at school so in 5th grade when I almost died of a sickness, my mom pulled me out of school to home school me instead but we were more concerned with getting my health back on track at first so I actually stopped doing school completely for awhile and when I picked back up on it, I had forgotten most of what I had learned before. So even though I’ll be 20 on Thursday and my YOUNGER brother is going to college in August, I’m still doing 6th grade level math (and doing terrible at it) and 8th grade level English and the rest I don’t even know. My mom has me focus on 2 or 3 subjects at a time. I usually do school when she gets home from work so that I can get all my exercising and whatnot done with my nurse during the day, so if I went to work with her during the day, I’d have to do all my exercising AND school between 4:45 pm (when we’d get home) and 7:00 pm (when she puts me to bed), and I just don’t see that happening. Then, although I want to work like a “normal” person, I also have dreams that I want to achieve. Yes, I’m tired of relying on others for money, but that’s mainly the selfish side of me. Currently, I have $101 to my name, which usually is enough for Christmas presents – and I haven’t even received my birthday money from my grandparents yet this year, which they usually give me a $100 gift card for my birthday and a $50 gift card for Christmas. I’d like to spend that money on me (oh, the CDs I’d buy…or the games…or the books…or the clothes…!), but I know when Christmas comes, I’ll regret it cuz I like to splurge on presents for my family since they do so much for me. It’d be nice to be able to buy stuff for myself, but I don’t need that stuff. My mom takes great care of me and we’re definitely not poor. Its the selfish side of me that wants more money – I don’t need it whatsoever though. I want to be a successful screenwriter and YouTuber. I want to write awesome movies that draw awareness to SMA and helps SMA patients who can’t afford treatments of any kind receive the help the deserve. I want to make YouTube videos that not only draw awareness to SMA but also help other people who are struggling with life (abuse survivors, foster kids, depressed people, the sick, etc. – I’ve been down all those roads WITH SMA and I want to help others make it through even though I still struggle as well, which is why my channel is called Surviving Life instead of I Survived Life.) Ultimately, if having a paying job gets in the way of the “work” I already have, its not worth it at all. I don’t need it. I’d like it, yes, but I need to succeed at my dreams.
I’ve never heard of SSI, but I know my mom has been trying to get me approved for disability benefits and I won’t get them if I get paid so all the money I do possibly get has to be from non-job sources. If my mom had hired me, she would’ve been paying me out of her own pockets and I would only have a small job, and right now I don’t get paid for YouTube or anything. My mom is incredibly smart and has worked her behind off to ensure I was set to live a good life no matter what happens.
Halsey, you live in Indiana? So do I! Lol. Personally, I’d love to live in LA or Germany instead but its all good. Lol.
DeAnn, are you talking about the new Jumanji with Kevin Hart and the Rock? That looks so good! Me and my bro wanna see that. Maybe I’ll talk him into going with me during his home stay for Christmas…
Kevin, thank you for the book recommendations! I’ll have to check them out sometime. Far From Home has had me messed up real bad since I saw it. I really hope we don’t have to wait too long for the next movie to come out… I feel bad for Marvel workers now that I think about it. They put extreme time, money, and effort into a two to three hour movie just for us fans to sit and watch with popcorn, enjoy, and then immediately ask for another. You see what I mean? Lol. Kinda messed up but God, I’m so glad they do it! I wonder what it’d take to work for Marvel as a screenwriter… What would a screenwriter have to do to get the job…ok I need to stop that kind of thinking right now. Lol. But anyway, it’d be cool to have an SMA character who gets bit by a radioactive spider, right? I REALLY REALLY don’t like spiders of any kind or size but every time I see one I say, “Don’t come anywhere near me unless you are radioactive and plan on making me superhuman.” Although, I probably not actually be superhuman – I’d just finally be “normal”. Lol.
July 17, 2019 at 9:24 pm #19881
Crystal, I just sent you a private message to, but also wanted to make sure you know that in Indiana you can still work and receive benefits. A portion of what you make would be deducted from your benefits each month, but not all of it. I fully support your choice to focus on your school, but if you ever change your mind, there are still ways you can keep some of what you earn if you want to work.
July 17, 2019 at 10:08 pm #19885Ryan BerharParticipant
Again, I can only speak for my state, but the thing about SSI that I really dislike is that it doesn’t incentivize people to work. Like Halsey said, you can work and still receive benefits, but you can’t earn much. More accurately, you can’t earn enough. I can’t remember all the exact numbers, but here’s the problem. Let’s say I need $2,500 a month to provide for myself financially. It would be very helpful if SSI helped get me over the hump. Let’s say I earn $2,000 of my own money, and SSI supplements the additional $500. Fantastic. But unfortunately, that’s not possible, because SSI goes away once I reach (don’t remember the number, but it’s less than $2,000 of monthly income.) So while SSI is definitely a positive thing, it kind of has me trapped me in this area of not quite getting over the hump. I mean, I don’t want to work more only to have my SSI reduced and be left with the same amount of overall money. That doesn’t make sense. It’s backwards as far as I’m concerned. It would make more sense for SSI to kick in once you reach let’s just say $1,500 of income a month. This way people are actually incentivized to work. I understand that that’s not helpful for those who make nothing, but again, let’s give those people an incentive to work. This has frustrated me greatly ever since I turned 18.
July 18, 2019 at 10:31 am #19887DeAnn RKeymaster
Happy Birthday! I would certainly encourage you to look into Supplemental Security Income (SSI) by contacting the Social Security Administration. You may not have qualified when you were younger depending on your parents income, but you should qualify now. Like I said, you may need to pay your parents rent from it, but it’s still better than nothing. Now that you’re getting older I also want to nudge you to check into things like this personally. It’s great that your Mom is checking on it, but I’ve always found if I’m more involved I can comprehend things better. Plus as I take on more responsibility it gives my mom a little break.
As Halsey said, you can work and retain benefits. It may not be the right time now, but don’t dismiss a future opportunity if that’s your main concern. SSI does fluctuate with income but eventually SSI becomes SSDI and is more stable.
In the meantime keep following your dreams! Sounds like you’ve got great aspirations.
July 22, 2019 at 7:20 pm #19936
Thank y’all so much! I’ve decided for now that I’m gonna focus on school and my dreams, but its really nice to know that I do have options. I’m also gonna focus on exercising. As y’all probably know, its hard exercising in a wheelchair with SMA. But I wanna try doing more. I already do laps in my manual wheelchair and an arm bike machine, but that’s about all. I want to do more.
And thank you DeAnn, for remembering my birthday! I got a few books to learn more about screenwriting, The Purpose Driven Life by Rick Warren, a fantasy/Sci-fi book that I forget the name of, a dry erase board notebook that makes writing my scripts for YouTube easier, GT Sport for the ps4, some clothes, a wallet, some fruity ChapSticks, and some coconut scented perfume and lotion. I didn’t get a cake but my mom did order donuts for breakfast for her and my bro and she let me lick the spoon covered in the cream filling of a chocolate long John since I can’t eat anything solid. Oh and I got the SpiderMan Homecoming movie on blue ray with extra scenes and behind the scenes and more! I love it! I love everything I got lol.
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