That was a surprise! My childrens SSI...UPDATE...recent update, feb 26...March 20th
Update March 20th- Im going to edit my post to change the negative focus. Instead, im going to update now and then on specific things disability has helped greatly with my children. Many people like to be negative about children with social security disability. I believe it is because they dont understand the things it is used for. So, im going to share examples and erase all the negative updates about the name calling.
My son, the one in the picture, is now showing significant changes in his eyes. When he was less than a year old his right eye started to turn in. It got better in the years and seemed to stop turning in. About a year ago I noticed his left eye was ever so slightly off. Other people didnt notice but im mom, I notice these things.
This past month or so it has become a problem. It is no longer slightly off. His eye turns all the way in. Some days its so bad that you can mostly only see the white of his eye. He got new glasses 6 to 8 months ago. I had to take him back to the eye doc before his one year check up. He is fitting him with new glasses. He is to wear them for 3 months to see if it correct it. If it isnt corrected he wants him to go back to his specialist, another 5 hour trip and expenses. This is when surgery will be talked about. More expenses.
Now, going back to the glasses. This is the second pair in a years time. Glasses for him isnt simple. His lenses have a permanent tint and a transitional tint, to darken more when he is outside to protect his eyes from the sunlight. He also has bifocals.
Without insurance to cover the expenses of these glasses , dr visits and possible surgery we wouldnt be able to afford it. There are other expenses the insurance doesnt cover. The tinted lenses ,for an example, is out of pocket. Trip expenses for another example.
I hope this sheds a little light on where the expenses go, at least for one family. Every family with special needs children have their own reasons and expenses.
I would have deleted this post long age, because of the name calling, if i hadnt thought the information would benefit some of you.
His right eye...
his lleft eye now....
Update Feb 26- Since my post was bumped I figured I would do a quick recent update since this post is over a month old.
When I made this post, I was getting ready to go on a medical trip 5 hours away for my daughters seizures. That visit led to another visit. So, 2 out of town, 5 hour trips, for medical reasons. That is about $200 in gas each trip, to give an idea on expenses.
Well, we just had another trip last week. We were gone for 3 days. My daughter had an EEG on her head the whole time. It was an exhausing and stressful trip. We hope to get more answers to help her more with her problems. The results should be in this week or next week.
I have 3 children on SSI. Today I went to withdraw money from my sons account. After withdrawing I always get a balance. I noticed it was off. Too much was in there. So when I got home I looked it up online and SSI added another $23.97 to all three accounts. I was surprised. I heard social security was getting a raise but I never saw the extra added seperatly like that.
It will come in handy since my daughter has a dr appointment this month thats 5 hours away.
UPDATE: I just got the letter telling me about the $23. lol
Edit: Wow! I wasn't expecting so many replies. Some of them are sad to read but it is expected to be judged in this group so it comes with the territory. Ill answer some questions here so I dont have to repeat myself. 1. 2. 3. 4. ............ 5. Sorry If anyone mistaken this as a brag post, but seriously who would brag about $23.97? It wasnt my intentions to make anyone think i was bragging ,or to offend anyone 6. Im sure everyone knows by now that im Achormia. It wasnt my intentions to "come out" but when I started getting questions about my childrens disabilities I knew it would since people know me as the mom with children who have albinism. 7. .......... 8. ..........
9. Im getting a lot of questions of why a child with Albinism would need or qualify for SSI: Albinism is more than just lacking pigment. There are vision problems that range from low vision to blindness. Sensitivity to the sun limits many things from vision outside to easliy burning. also, there is a higer risk of getting skin cancer. .
10. About the albinism, look past the pigment part of it and just think of the vision. You will understand better. If you cant understand why a child who has low vision, is legally blind or completely blind would get ssi services then there is no way I can explain it to you. you already have a set opinion about it.
* Both boys were diagnosed with Ocularcutanious Albinism. This means lack of pigment in hair, skin and eyes. It causes visual problems as well as other challenges.
A pic of my youngest son....