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bethben

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About bethben

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    Hive Mind Queen Bee

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  1. I used to live in a place where my friend got yelled at loudly in a public area because she had too many kids and was destroying the earth with her carbon footprint. So, basically, you just learn not to share your viewpoint and know that if you do, you would be inviting all sorts of people to curse at you (I learned my lesson to not offer differing options even if offered in kindness). I live in a different part of the country now and didn’t realize how much I altered my speech in public —even if it was at a coffee shop with a friend —until I moved. I’m saddened that things are like this now.
  2. Just make small changes and keep making them. For instance, if you want to cut down on sugar, start there and once you feel you conquered that, move into the next thing.
  3. I want my son to die before me because at least I know he's safe with Jesus. I also feel horrible saying that. I also know that my life would change dramatically and I'm not sure what I would do with myself since my life is so wrapped up in his.
  4. When we were moving from Minnesota, I knew enough about how different states had different waivers to help with children with disabilities. Most states have no help whatsoever for disabled children and adults. I called someone in Tennessee for example. I was told that unless I had a direct/audible call from God to move to Tennessee to not do it. She then proceeded to tell me how an elderly mother with a disabled adult child was told to abandon her child at a homeless shelter so that she could get help for him. I've heard other stories like that - basically a lot of parents have to make their child wards of the state in order to get help. It's horrible that this happens in America honestly. My sister is moving to Tennessee with her autistic child--it's a done deal for her. But, she is already in a state that offers no supports so it's not a change for her anyway. I can pay down my mortgage and add more money to retirement because of a program available in my state. I became a Certified Nursing Assistant so that I could be paid to take care of him. The state is paying someone to take care of kids like my son and they figured that parents should be paid just like anyone else who would have to come in and help. So, I have a full time job. Not every state has this - especially when children are under 18. There are very few states that have anywhere close to this program. So, to answer your question about how to help parents get a break, you will have to contact the ARC in your state. But, be aware that the majority of states have no helps for parents who are raising severely disabled kids. And it really doesn't matter if it's a blue state or red state.
  5. My friend’s 18 year old son can get a job in cyber security with an associates in that field—2 years of college. He has a pick of jobs if he wants. Granted, my friend feels that he’ll still need to finish a four year degree to keep the job, but that’s pretty good money. You have to like hacking into computers though.
  6. In six months, join aarp. In a little over five years, but a home in a 55 and up community and be considered “an older adult”. I’m slightly horrified.
  7. Has anyone done this with their child or themselves? I'm trying to figure out if it's a sham or real science. It's to try to help my daughter who has anger issues, defiant issues, possible RAD, and ADHD. I'm not convinced she will choose to follow a therapist's recommendations with things to try at home to regulate her anger.
  8. He functions at a 18 month old level. He’s mostly non verbal but we understand what he needs or wants just because we’re around him constantly. Like for instance if you leave the tv remote on the kitchen table, he will grab it and give it to you to put back in it’s proper place. I know the difference between pain grunt, too gassy grunt (he has a g-tube) and constipated, put me on the potty grunt. He does have about 10 words and phrases that have changed a little through the years. Lately, he has been calling me mama bear. I call him baby bear. He laughs. It’s our comedy routine. He gets around pretty well in a wheelchair because everything below his waist is messed up.
  9. Another also, do any of you with these kids have close friends? We moved four years ago and have yet to make good friends in our new location. I've tried - it's just never reciprocated.
  10. Also, those with older disabled children—do you have any plans for when the rest of your kids are launched? I feel like I will be invisible for the rest of my life. I want to do other things with my life but the coordination of it all is exhausting.
  11. We’re working on getting him a day program. There are only two that work for him. One is too far and spending over two and a half hours in the car driving him back and forth is to much for me. He is on a waiting list for a closer one. Ironically, his brother provides respite so I can work out alone or go shopping and we have a person for longer periods of time if we want to get away for a night or go on a long hike. In home care where I am home is a nightmare for my introverted self. I’ve tried it for three summers and it was not at all relaxing and pretty stressful to me. I need a different setup in my home to make that work.
  12. I’m in Colorado. I have trouble with physical groups since a lot of them are dealing with autistic children. Mine is such a different road. I’m not dealing with behaviors as much—just the physical care drain. I’m also realizing I have not processed my grief over his life properly. Since he turned 20 and his 18 year old brother is starting to make plans for his adult life, the whole “I’ll be a mom to a baby/toddler for the rest of my life” has really hit me hard.
  13. I have a 20 year old severely disabled child. I am looking for some "what is normal" in this type of situation. I am also having trouble finding anyone in real life with a similar situation (I've checked facebook only and don't have any other leads). Check in here please.
  14. I have never heard of property taxes being included in closing costs. Every time we've sold houses, closing costs and taxes are two separate items.
  15. I have eczema on my hands and my neck. I'm currently doing an elimination diet to figure out the internal cause and it is clearing up. Now, after my shower, it gets really aggravated and I think I need to clean up which shampoos and soaps I use. Any suggestions for clean shampoos and soaps that won't break the bank?
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