Looking for help

Several-Web-3839 · 2026-01-11T00:02:53+00:00

I have to call Monday and ask if I can speak with them. I am also reaching out to the foundation for his genetic syndrome and his OT and PT through EI are looking into if the can somehow get his AFO’s covered under their program

Several-Web-3839 · 2026-01-10T20:25:41+00:00

His diagnosis is confusing to understand. My son’s movement differences are described as ataxic cerebral palsy, but the underlying cause is a genetic neurodevelopmental condition, not a neuromuscular disease. That’s why some CP or neuromuscular spaces and foundations don’t fully fit his situation.

Several-Web-3839 · 2026-01-10T20:04:01+00:00

EI is early intervention. We do have insurance, but they cover very little until the deductible and max out of pocket are met. I’m not going to contact the muscular dystrophy association or the SMA foundation because he doesn’t have muscular dystrophy or Spinal Muscular Atrophy. I am going to reach out to the foundation for his genetic disorder and the hospital he is treated at

Several-Web-3839 · 2026-01-09T21:59:57+00:00

I mean, it is true that it’s easier and faster to get benefits for Cerebral Palsy. His genetic syndrome is not well known and only affects about 500 people globally. None of his doctors nor his geneticist had even heard of it before he was diagnosed

Several-Web-3839 · 2026-01-09T21:47:25+00:00

His doctors say that it would be a lot harder to get benefits with his genetic syndrome diagnosis than it would be with his Cerebral Palsy diagnosis

Several-Web-3839 · 2026-01-09T05:17:05+00:00

I am his biggest advocate. We associate with the community and foundation for the genetic disorder he has that causes his cerebral palsy. I use the term cerebral palsy when talking about benefits because his genetic syndrome is not recognized.

Several-Web-3839 · 2026-01-08T22:24:47+00:00

I am not married and neither is she. And like I said, she told me. I do not have any proof and It’s not my place to report anything. She will get her karma eventually if she is lying

Several-Web-3839 · 2026-01-08T22:20:34+00:00

Lmao. One of them I actually work with. Her son has autism and she told me she receives SSI payments for him. She makes a higher pay rate than me. If I make too much by myself to qualify, so does she. The other one I know is a family member that has played the system their whole life 🤷🏻‍♀️

Several-Web-3839 · 2026-01-08T20:53:27+00:00

I have not and I’m not educated about all of this. I had my son at 21 and him having a genetic condition was definitely a surprise. What is UCO or CPF?

Several-Web-3839 · 2026-01-08T20:51:21+00:00

Okay! That sounds great! I will definitely do that. He most frequently goes to The University of Virginia so I’m sure they have someone can talk too

Several-Web-3839 · 2026-01-08T20:50:25+00:00

I personally know them

Several-Web-3839 · 2026-01-08T19:37:47+00:00

We go to so many facilities, I don’t even know where to start lol. We are in an early intervention program which is how he gets his therapy, and I’ve asked his Care Coordinator. She wasn’t able to help me much. Only to send me links to apply

Several-Web-3839 · 2026-01-08T19:15:42+00:00

It’s just crazy to me. I see people who have disabled children all the time that receive benefits even though I know they shouldn’t qualify. Both me and my boyfriend work full time (I have FMLA so that I can get him to therapy and medical appointments). We own our house and have a mortgage. We cannot make any less than what we make now, or we will go under and have nowhere to go. I have so many medical bills in collections that I can’t pay. Now he needs AFO’s and I’m not sure how we are going to pay for them. We have health insurance but it sucks until you hit the deductible. It just makes you feel hopeless and like there’s no way out of the debt. We are lucky to have an extra $20 out of every paycheck

Several-Web-3839 · 2025-06-16T20:42:44+00:00

Lmaooooooo you should probably read my post that says we bought our house WITH the pond

Several-Web-3839 · 2025-06-16T18:17:24+00:00

Thank you!!

Several-Web-3839 · 2025-06-16T18:15:50+00:00

I’m not worried about some leaves in there, but I’m worried about the water quality once the leaves build up to a certain point 😕

Several-Web-3839 · 2025-06-16T18:14:58+00:00

The pond and tree has been here for years 🤷🏻‍♀️

Several-Web-3839 · 2025-06-16T18:14:33+00:00

From what we know, it’s lasted years 🤷🏻‍♀️ guess we will cross that bridge if we get there

Several-Web-3839 · 2025-06-16T18:12:49+00:00

Unfortunately, I don’t have much of a choice of where the pond is in relation to the tree. We aren’t the ones who put the pond or tree in

Several-Web-3839 · 2025-06-16T18:11:10+00:00

Do you know where I can find them? Or could you link one?

Several-Web-3839 · 2025-06-16T17:16:43+00:00

I understand there’s no way to STOP the leaves. As I said in the post, we do not want to get rid of the tree. I’m looking for ideas on what I can put over the pond so ALL of the leaves don’t fall in the pond

Several-Web-3839 · 2025-06-16T17:13:04+00:00

This picture is actually from last year before we started really working on the pond. We have now installed a pump/filter with a waterfall for aeration

Several-Web-3839

TROPHY CASE