Yep. I replied a few months ago based on personal experience and it was removed.Just a quick note. I left a reply to a comment and it wasn’t even a bit off colour and it’s been removed. They really don’t show a true picture of what people say in the comments.
I can remember Asa saying it’s not all unicorns and rainbows and we like to show the reality. Hardly , as they remove comments that they don’t like.
Good possibility but I can only imagine the one still living, having to scramble and fight to get the insurance policy to pay up, before they pass, all the while, trying to take care of Abbie and pay on their own policy...
There are no “short cuts in life” and especially with a special needs child. I can only imagine that eventually the house will be sold and they have downgraded back into a house like the rental. The power bill, taxes and upkeep alone, would take Abbie’s modest social security benefits and there would still be a balance owed. Isiah is going to wise up one day and figure out that he can’t keep it up either. He is also going to want that freedom away...
I don’t want to think about what would happen one day, with my own kids but even my true HF Aspergers kid (that hopefully will become a doctor), I would never place on that child, the burden of taking care of another child, currently right at “teenage years” and not potty trained...
It isn’t fair for Isiah and it isn’t fair for Abbie. Isiah shouldn’t be forced to do that care and they should be making sure, the state has systems set up for her and lobbying for changes, if they don’t (which can be done, our state does a “pay follows the individual” and even living at home, their care workers are paid)...
It isn't fair and also not healthy to care for a sibling that way. I have no idea what it would be like to have a child that was disabled and needed lifelong care. I witness my parents deal with it, which may be as close as you can get to it without actually going through it. My brother is high functioning, but because he wasn't diagnosed as a child missed out on services that might have helped him be able to do more. But in the end, my brother is not my child. I am also younger, so I wasn't around when he was little. I didn't understand he was autistic until I was older. Then I saw aspects of him that my parents did not see. I still do. I can get him to do more than my parents can (bathe, keep his little apartment clean, take his cat to the vet, manage his money....), so I am in contact with him more.
Totally agree on the house not being affordable long term for Abbie. When we went looking, it took some time to find the condo we found. It is TINY, near the things he needs and enjoys, near public transit, energy efficient, and the condo fee is less than 5% of his monthly income. The taxes are also very low. Worst case I could pay them, even long term, and maintain my own home. My biggest fear is that he would have to face the world alone. My parents are elderly and I am in my forties.
(I know this a thread about FA, but this is the kind of stuff I was hoping would come up in their content. The hardest thing right now isn't coping with the finances or arranging for the help. It is feeling alone.)
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