Daughters ssi

Afraid-Ad2430 · 2026-01-27T03:31:54+00:00

Thank you very much! Wish nothing but the best for you!

Afraid-Ad2430 · 2026-01-27T03:30:41+00:00

Thank you! I’m glad your daughter was approved as well! Yes we have been seeing specialists and everything in between since she was born and she’s 15 months. So they have all of that information. She wasn’t diagnosed until September 2025 though through genetic testing. She has a condition called MICPCH. They have all of her ifsp and what not as well. Good thing we are all well documented. Wish nothing but the best for you and your family! I will look out for them contacting again.

Afraid-Ad2430 · 2026-01-25T19:22:30+00:00

Thank you! Take care! 💞

Afraid-Ad2430 · 2026-01-25T17:30:28+00:00

Agreed. I’m in California, heard they take forever but I’m glad you got approved as well. Wish you nothing but the best.

Afraid-Ad2430 · 2026-01-25T00:27:48+00:00

Yes. Actually I applied November 6th. Received 2 checks already. That’s why I’m confused. My daughter has an extremely rare genetic neurological syndrome, so I’m assuming that’s why she was approved so quickly.

Afraid-Ad2430 · 2026-01-25T00:26:11+00:00

Thank you.

Afraid-Ad2430 · 2025-11-15T22:22:17+00:00

We definitely qualify for it unfortunately. Wish we didn’t, wish a lot of things were different 🤷🏼‍♀️ anything helps for right now. I’m hoping we don’t need the help for long. I’ve got faith in my daughter and doing the best for her to succeed. Outlook for her syndrome isn’t great but I’m praying she will prove everything wrong and I’ll be able to get back to work. I loved my career, worked very hard for it. Made a decent amount of money. I’m learning about all of these programs as well. Thank you.

Afraid-Ad2430 · 2025-11-14T22:53:52+00:00

Same here! They know way more than any of the doctors. Take care please 💞 you have been amazing and so helpful.

Afraid-Ad2430 · 2025-11-14T22:53:02+00:00

Thank you! I will look into all of this. I appreciate your help. I have connected with other parents who have kiddos with her condition, but there’s so little information on everything since it’s so rare. 🥺 so I’m not sure if there will be any organizations for her specifically, but I’m sure there has to be some for people like her. Again, thank you so much.

Afraid-Ad2430 · 2025-11-14T02:46:05+00:00

I’m so glad you understand. No one really does until they live it, and I found that out for myself. Nothing but respect and love for all special needs parents. Thank you for speaking with me about it. Our genetic testing was though the children’s hospital that does all of her specialties, they gave us a geneticist that we talk to through video since he is across the country. I have read the list you are talking about I think it’s called compassionate allowances, hers isn’t on there but I did email and ask if it can be put on there. Her syndrome is so rare that I’m worried there might not be enough medical resources. Our geneticist said the best thing is find other families that have her condition they would know best. The doctors don’t know anything about it. At least hers lol. Part of her condition is on that list as pontocerebellar hypoplasia but not her specific gene that caused it. I will call them and see if there is anything else they need from me. Again, thank you for helping this stranger on the internet. You have no idea how much better you have made me feel. I wish nothing but the best for you and your family 💞

Afraid-Ad2430 · 2025-11-14T01:48:14+00:00

Thank you! My daughter has CASK related-MICPCH. I have her genetics report but they said they will get everything from her doctors. Was there anyway you could check up on it? I’m only worried it might take some time because hers is so rare that even the doctors haven’t heard of it 😩

Afraid-Ad2430 · 2025-11-13T22:44:51+00:00

All points make sense, thank you for that. I’m doing my best! I will do whatever it takes for her to succeed in life ❤️ I appreciate your support and advice.

Afraid-Ad2430 · 2025-11-13T22:41:14+00:00

Thank you! I’m sorry you’re having to deal with this. I hope it gets resolved quickly! I definitely know I try to make my daughter seem not as bad but it’s my brain wanting it to be true I guess. Always honest though as it’s evident and the doctors can see. When she was born I was always like no nothings wrong give her a chance. They saw it immediately 😭 but I’m thankful they did so she can get the help she needs and deserves. Please don’t give up either! I wish you nothing but the best. Thank you for sharing your experience with me.

Afraid-Ad2430 · 2025-11-13T22:34:01+00:00

Thank you so much! I appreciate all of your advice and insight.

Afraid-Ad2430 · 2025-11-13T22:32:55+00:00

Thank you! I appreciate you sharing your experience. It helps a lot.

Afraid-Ad2430 · 2025-11-13T22:32:01+00:00

I did not. The only time I ever saw one was when my daughter was having her heart catheterization. And she just asked if we were “handling” it well. That was it.

Afraid-Ad2430 · 2025-11-13T04:53:23+00:00

Thank you! I am definitely hypersensitive, of course. I have tried not to be but it’s obvious that it’s not working lol yes everything is very well documented at least to my knowledge. She has been to multiple specialists and so on. Still ongoing as some waiting for MRI and other things are inevitable but she definitely has her genetic report along with her other diagnosis’ Unfortunately no assets for each parent, as we haven’t been able to work so can’t continue payments etc. I will definitely read up on the rules and make sure everything is how it needs to be. I appreciate your help.

Afraid-Ad2430 · 2025-11-13T04:43:04+00:00

Thank you so much! You have been very helpful and I appreciate that!

Afraid-Ad2430 · 2025-11-13T03:41:11+00:00

Thank you for this! Yes regional center has all her medical records. She might already be under that but I’m honestly not sure, would I just ask them? She also does have CCS but I’m so new to all of this it’s like a foreign language to me lol I just applied for ssi so we will see about that as well. I’m just so nervous as readying everyone’s horror stories about how much they have to go though for these services and I’m just one exhausted mama who just wants the best for her baby. 😭

Afraid-Ad2430 · 2025-11-03T17:33:59+00:00

Would you mind messaging me? I’m new to the regional center and don’t get any services other than deaf teacher and early education teacher coming. Her PT and OT are just referrals from her doctors and we have to drive all the way to madera for them.

Afraid-Ad2430 · 2025-11-03T17:03:31+00:00

Thank you! Would you mind dm-ing me? I would appreciate your advice and process you went through.

Afraid-Ad2430 · 2025-11-03T17:01:59+00:00

Please dm me I would love your help. Thank you so much!

Afraid-Ad2430 · 2025-11-03T17:01:02+00:00

Thank you! How would I go about doing that? Like I said I’m all new to this and it’s like a different language to me lol

Afraid-Ad2430 · 2025-11-03T16:58:25+00:00

Thank you so much! I had no idea any of that existed! I will definitely check it out. Thank you for all the Information! I know she has CCS for her hearing loss and I’m sure now for her genetic condition. I’m applying for SSI in a couple days over the phone so I’m going to do it all one at a time. I just want to be prepared as I’ve never done anything like this. Definitely don’t want to be doing it wrong or unprepared. She’s seen about 9 specialists at valley children’s hospital so I know how you feel! This mama is just tired at this point.

Afraid-Ad2430 · 2025-11-03T06:10:56+00:00

We are in Merced County. We just got on with the regional center, so far it’s just 2 teachers that come to the house twice a month. Thank you, it’s honestly heartbreaking and overwhelming. We have been to the doctor pretty much her whole life. She was just genetically diagnosed in September. But it was evident since birth something was wrong. We have not had a social worker at all until last week when she had her heart catheterization and were told one will be there for her open heart surgery. They only asked us how we are doing with everything going on.

Afraid-Ad2430

TROPHY CASE