So apparently part 1 of the SSI meeting for Jonathon just completed. They’re going to send me ANOTHER packet for me to return and then have us possibly refill out the medical release forms because apparently in Oregon now- a child over 15 needs to sign them… even though I stated he needs help signing his name. I understand those questions, but they get so intrusive and annoying “He’s quadriplegic, I do 100% of his care… I have to feed him, brush his teeth, blow his nose…” “Okay, well does he go in and wash dishes or wash and fold his clothes?”
So it was a long afternoon of answering the same things over and over again and after I receive and send in the next packet… they said it could take up to 120 days… BUT mainly because he’s at the cusp of adulthood so they might treat the medical portion as if he’s already an adult (which be nice because he’d be on an open card and his supplies would be paid for… but why so long????).
I also voiced my concern that if for whatever I am denied for now- when to apply for him as adult. Thankfully I was told because of his condition, he’s already gotten an open medical history- they’ll get the ball rolling on that.
So once more I was assured that as soon as the magic number 18 comes- he’s all taken care of.
I guess I was hoping for a one day decision and process (we had been denied SO long for so many years since my income was only… literally a few dollars over the income limit- BEFORE taxes and premiums were taken out… and trust me, here they take a lot out).
At least I got it over with and they didn’t deny me on the spot this time after wasting hours answering questions.
It kind of reminds me of the telephone calls you get, asking if you have time for a brief survey … which always seems to take 20 minutes.
Q: What comedies do you watch on broadcast TV?
A: I don’t watch broadcast TV.
Q: What hour-long dramas do you watch on broadcast TV?
A: I don’t watch broadcast TV.
Q: What news shows do you watch on broadcast TV?
A: I don’t watch broadcast TV. Couldn’t you just put “none” for all of the questions about broadcast TV?
Q: No sir. I’m just trying to do my job. What sports shows do you watch on broadcast TV?
A: How much longer did you say this survey was going to take?
What is SSI?
OMG It can drive you insane! But you can’t really get mouthy with the SSI people (just hints of sarcasm as you can tell they are annoyed by the questions themselves- at least in this case, most telemarketers… no, they’re clueless)
“Supplemental Security Income (SSI) If you’re elderly or disabled you may qualify for SSI.
SSI makes monthly payments to people who have low income and few resources and are:
* Age 65 or older;
* Blind; or
* Disabled.”
Under 18 they look at the parents income etc. The main part I’ve tried all these years to get it (he had it when he was younger and I worked for a very small wage and had Ash living at home). He would get an open medical card which covers EVERYTHING.
At home now- he has a broken down power chair with a seat that also needs replaced- his insurance only allows one chair, so his manual chair I’ve had to take pieces of chairs from a wheelchair graveyard and make one. The open card allows for more physical therapy, more equipment to help in his daily needs (such as bathing and transporting him from the chair to bed, tub, etc. He’s getting HEAVY!) it’ll cover the costs of his diapers and other things.
I have insurance through my company- but it still sucks when special needs items are SO expensive!!! His wheelchair costs more than my car. He has one molded seat that took years to get… it’s just so he can sit outside of his chair like on the sofa or possibly the floor if I had the base- but that alone cost $600. Even car seats that cost $60, you throw ‘special needs’ on it and it adds an additional several hundred bucks. Some for his size – it’s only an added inch or so of material.
It’s been about 10 years since he was on it, but when I remember it lol I see a bright shiny light, hear the angelic music and everything seems so wonderful! It even covered toys he could use or adaptive buttons to put in toys/items so he could use them!
Not to mention the care providers and facilities that won’t take private insurance- or if they do, they jack up the price because his medical card will cover services. If you are disabled and not on SSI, you’re pretty much screwed. That’s why a lot of parents have wound up giving their child to the state- so they can get equipment and care for them. (I ASSUME that has to be the reason. It makes me mad to think it’s for anything else)
It’s been a long 10 years to wait for him to be 18… but me and his therapists, the people who work with him at school… we’ve been waiting for this for so long and will be rejoicing come his birthday (other than the fact it’s his birthday lol)
I had no idea. I knew it must have been difficult, but hearing some of the details really brings it home. Probably most people don’t really have any idea.
By the way, here’s a daft idea I thought of the other day with respect to your graphic novel. You’ve kept all of the details to yourself, so obviously I don’t know what it’s about, but I gathered it had something to so with some kind of “product”. Now, in Writing 101 they tell you that you should write about what you know. It seems to me that one thing you know quite well is the kinds of problems you’ve just been describing, which (admittedly) aren’t the kinds of things that most people can extract entertainment value from. However — and here’s the important part — you are pretty skilled at making stuff funny, particularly using rants, and funny stuff does have entertainment (and monetary) value. Is there any way you can turn your experiences as a single mom with a disabled child into something comedic? If so, it would be something unique in the marketplace.
That’s a pretty good idea. I know I for one feels pretty isolated and I LOVE comedic writings! Part of Fam Z is that Jonathon is one of the characters (as am I), so it’ll center around us in the new world trying to slay the zombies (he wants a pimped chair for the story!)
Perhaps both stories can be hand in hand…
I think a comedic view to life as a single mother of Jonathon can be something really needed! With our escapes into the gaming world, comics, how I change our views of life to make things a little more interesting for him- his frustrations with people when we’re out and about and he’s fed up with the stares and rants at the people being rude- who have no idea what he’s saying… but I do. (where partly you are educational for the public just by existing… and then you have moments “PLEASE LET US JUST GO ABOUT OUR DAY!!!”)
It is hard, it’s funny, it’s rewarding, it’s heart breaking and it’s triumphant. lol I think it should be a story told… part two can be caring for him as an adult. All the times I’ve had to give him CPR, all the times his surgeries went awry and all those times I almost lost him… and then all the successes and when he said his first word at the age of 6 or so “Mamma”. All the promises early on from doctors that he might walk or at least stand on his own, and just growing to finally accept and hear the words that will never be able to even sit up without support.
He’s so brave, so funny and just an amazing boy. I think it’s a beautiful idea. If not for other parents in the same situation- I know our story has snapped people out of their own depression and it’s helped them see how lucky they are… plus… making people laugh… added bonus!!!! Bragging about my child- priceless!
I guess I had heard reference to “Fam Z” before, but they just passed right over my head.
Looking back I think I mentioned more of the zombie slaying side of it.
You want to know what else makes it a really good idea…? Tonight I’ve been sitting here kind of replaying the beginning of it all in my head and I laughed- but it was a very uncomfortable laugh, because it was so uncomfortably funny.
I managed to make finding out I was preggo as my bf dumped me for his ex gf (and assured me “No you can’t be pregnant- we used a condom and I don’t feel like you are…” because HE wasn’t having morning sickness?) as he bullied his way out of my life at the same time my parents announced they were leaving town forever… leaving me homeless as my world is spinning crazily out of control and all I could think about was, “I can’t be pregnant! My parents are going to KILL me!”
I want it to touch people and make them stir in their seat. And then maybe get these gawkers to feel comfortable those of us who aren’t the norm- by no outside doing (it’s not like we’re sporting green mohawks… although I’ve used that tactic in the past to get people to stare at ME instead)
I should focus down my brain! SO many ideas- at least the graphic novel gets my writing skills sharpened for this!
I guess that in the “write what you know” category you’ve got even more raw material than I imagined. Of course, some of it is more unique than others. A quadriplegic son is more uncommon than a surprise visitor and abandonment. Which one is better for writing about is unclear. The common thread seems to be that these are all good stories for getting people riled up. At least, they make me angry. Plus, to me, they raise as many questions as they answer.
I trust you never fought off any zombies in real life. That would be the straw that broke the camel’s back.
(And no, that’s not really one of the other questions that is raised!)
LOL I have a habit of speaking non-nonchalantly because “this is my life and it’s normal to *me*” and many people are left with their mouths gaped open. In a way I always laughed at the character Pheobe because when she’d matter of factly mention a portion of her life in order to relate to the topic at hand… she was met with the same reactions.
I’ve learned you can’t control people or situations- you do what you can and you make the most with you have to work with… and the only thing you have to work with that no one can take away is your outlook and inner light.
The following isn’t too personal of information- but it may shed light. For months prior to his birth after my family moved away and I was squatting place to place- I had to leave my job because I lost my home… but I managed to make a living from cleaning homes while I could. I spoke with an adoption agency because I knew I couldn’t provide for him (obviously- I couldn’t keep a roof over my own head). My family helped out by taking my daughter with them until I was able to find a place to live (I kept my pregnancy hidden because I had enough to deal with). I found him a loving family who lived upper state in a beautiful home and they looked so happy and were so nice. It was killing me, but I wanted the best for him and I knew having me as a mom would not be easy. His father signed away his rights and it was a done deal.
When I went in for a doctors appt, it was the day before Thanksgiving- they sensed something was wrong (oddly enough things were fine prior to my first ultrasound which left me bruised around my pelvic area, but I couldn’t get any doctors to answer my questions or help investigate at the time- that’s the thing that angers me most of all! I believe that’s what happened) , apparently they thought his head was too big for his body, which could be helped while still in the uterus. They treated me like a druggy until all tests came back negative and then they realized tests should be done at a better hospital to find out what exactly was going on then.
They sent me to Portland (I lived across the river in Vancouver) I had no car but it was urgent enough where they got me in a medical taxi and had further tests run there. They needed to do a platelet count, but due to his position they couldn’t do it and were afraid that he wouldn’t survive natural birth… SO with little warning as I was down in Portland the day before a holiday all alone, they decided to do a C-Section.
They knew he was prepped for adoption, so they did their best to keep us apart (I was awake during the procedure). As they wheeled me into the other room, his little hand popped out from the crowd of doctors and nurses who surrounded him and he grabbed my hand as they wheeled me by. It was shocking at the time (to me and everyone who was there) but even MORE considering he’s quadriplegic.
Anyway… After the holiday, the adoption lady told me that since he was in NICU and there might be something wrong, regretfully they backed out. They weren’t prepared to handle it. I immediately told them I wanted my baby and I’d FIND a way to make it work! They told me that since I didn’t have a permanent address, he’d be given to a special needs state run facility. There was NO way I could let that happen, I felt he needed me more than any other child needed a loving parent… a few phone calls, my bio dad in Alaska offered to let us move up there- said it wouldn’t be a problem finding a job, etc. Although I had no prior relationship with him really- HELL YES!
The hospital human services people spoke with him (or someone… I don’t completely recall, but I believe they confirmed) and it was approved.
It was the happiest day in my life when I yelled for the nurses to come in, unhook me from the IV’s and get me a wheelchair so I could go down and hold my son!
And so the story of “us” begins.
I also slayed a few zombies here and there, but that might have been drug induced from the C-section…
“Are you familiar with the works of Shan Yu?”
It’s only in that moment of crisis — I refer here to giving up J vs. keeping him — that you (and we) learned who you really were. All of the things you think you are can be unlearned in that instant when you are confronted with the appropriate stresses. I fancy I wouldn’t have done what you did, but until experience the same thing, who knows? I could be completely different than I think I am. But then, I’ve always arranged things so as to be maximally insulated from life’s ups and downs.
Well, that’s enough waxing philosophical for now, with apologies to Joss Whedon.
(Signed)
The Hermit of Dallas
I’ve changed over the years… with my telescope crisis- I blamed Canada.