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Thread: Help finding basic care

  1. #11
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    Maybe you could define "caregiver or the basic care" for us that she needs.

    It seems she is very capable of taking care of herself. I was at her age and my daughter was even more independent than me. Your daughter is far advanced, it sounds like, in mind more so than her body age.

    I don't view your daughter as less than capable because of a disability. She has a really nice full life so maybe we misunderstood exactly what you were needing with this post.

    As I said, my daughter was fine at home one summer at the age of 13. She was not taking college classes. Yes she got bored and didn't want to be alone but I wanted to advance in my job so we could both enjoy the fruits of my labor with the pay raise. She called me at certain times during the day and checked in. I also had neighbors and friends go by randomly and check on her.

    At that age, they are learning their independence and need to learn to entertain themselves. She sounds like she has lots of interests so it shouldn't be hard.

    The fact that you are only gone two days a week kind of makes it sound like she just needs company as opposed to being alone and needing care.

    Sorry you took my post wrong but as HLH said you could always hire a babysitter if you desire.
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  2. #12
    More or less she is clumsy when she walks and trying to do stuff. She's fine if she loads it up in her chair and pushes it, but I think we all know all know how hard headed humans are.

    She falls about twice a month and it's from pushing her limits see above. When she dose fall she gets bad spasm and intense pain in her legs are there about useless for a few hours. When she dose fall her chair is never around to transfer into. If she can get to her chair she can transfer and she's fine after a few hours.

    Last time I left her home when I went to work she fell and did not have her phone with her (that was about 3 weeks ago). I left work when she did not text me back after 45 minutes. Her chair was on the other side of the house and had made it part way back when I had got home.

    About 3 months ago I left her home and went to work; she fell when putting the stuff back in the fridge from her grilled cheese. The grilled cheese was still cooking so the gas burner was still on. She landed on her phone and broke the screen and could not get it to make a call. When the fire alarm went off the security company sent the fire department and called me. Luckily it was just a lot of smoke and a burnt pan. Child services was called and turned into a huge mess.

    I have looked for babysitters for in the house or at there house. They do not give her a chance and they jump right into the thoughts of “she will need so much help” before they see for them self.

    It looks like one of her class mates is going to be able to stop in for a few hours twice a week, but were still trying to work out the details.


    I'm sorry hlh I did not mean to offend you or anyone else.

    I know I come off wrong a lot of times when the subjects end up on home schooled kids/socialization or it ends up on disabilities.

  3. #13
    To the question of what care dose she need...

    Someone to be around in case she wants something.
    Someone to take her her chair after they hear a loud thump followed by **it.
    Someone that will pay cards, girl talk, or something intelligent for an hour or so.

  4. #14
    I would also suggest she get some additional PT to address her falls...both for prevention and to learn how to get up off the floor when she does fall. Eventually she is going to break a bone or worse during a fall, so they cannot be taken lightly.

    (KLD)

  5. #15
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    You help with this, I help with that

    There are many types and scope of home schooling. Find some area organizations that may help.

    Trade one of your days for help with a field trip and other families can watch your daughter.

    It’s a wonderful system and I wish I had never gone to public schools in Florida, after my second year of college, working full time, they kicked me out of HS. Still graduated by omission.

    A homes school is about a dozen kids and a mom teaching 9supervising0 they work on their own.

    You find the right organization (leave e a note) and I am sure you can work a win-win-win for all.

  6. #16
    Quote Originally Posted by woodoven View Post
    To the question of what care dose she need...

    Someone to be around in case she wants something.
    Someone to take her her chair after they hear a loud thump followed by **it.
    Someone that will pay cards, girl talk, or something intelligent for an hour or so.

    I understand. I would also be worried as you are about leaving her alone. You can try negotiating with her about her risky behaviors when left alone, but I completely understand how she can be stubborn and want to do things her own way anyway. Of course, that is one of the reasons she is so successful in her life... having that drive.

    My father is the same way, and I worry about leaving him alone during the day too. He is 70 though! But he also falls frequently, can forget to have his cell phone etc... and he is very stubborn. It is very stressful.

    At a minimum, it sounds like she should have one of those Alert system pendants when she is home alone. Then if she falls, she can just press a button. Some of them will call several phone numbers for you asking for help, as well as talk with you to see if you are ok. You could have one number be you, one your Mom, maybe one a ?near neighbor who could in a pinch come over and bring your daughter her chair and make sure she is ok. I assume she already has a cell phone "fanny pack" so she is carrying it at all times?

    Also, is it time to have a few sessions of PT now that she is older to help develop a few more strategies for doing floor transfers? Sometimes it can be helpful. As she gets taller/stronger, she may be able to develop more options.

  7. #17
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    She sounds like the typical kid...lol

    My daughter was not allowed to turn on the stove under any conditions. But I came home that summer and the microwave was sitting on the outdoor table. I asked what happened and she started up the microwave outside without saying a word. She cooked a piece of pumpernickel bread for five minutes not five seconds. We had to throw the microwave away it smelled so bad. I kept missing one of my plates after that and I got the excuse it was probably under the bed. When we moved a year later....I found the plate and the bread cooked to it. It was black and a chisel couldn't get that off. It was a Corelle plate too. We still laugh about it. But she learned a good lesson.

    Your daughter also sounds alot like me. I walk too. The dog jerked me down last night. I fall maybe three times a month but when I do its a doosey. She sounds very independent and determined. That is a good thing. Realizing one's limitations is never easy at any age. So I sympathize with her there.

    I hope you find a solution to ease your mind.
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  8. #18
    May be a service dog would be useful for her? The waiting lists are usually long so it will not help you right away, but it could be a long term solution. A dog could carry an emergency cell phone and bring her chair to her. It would also provide a company.
    From what you say it seems that your daughter is very independent and she needs a friend around rather than caretaker. A classmate seems like good idea.

  9. #19
    PT only dose so much when it comes to nerve issues. We hit the insurance cap for PT for the year unless there is a new injury. When were out of the house she will use a cane or her chair if there is a lot of walking, but I can not keep a cane in her hand at home.

    She is no longer allowed to use the stove unless I'm there.
    I bought on of the alert system, but in her mind if her phone is better keep her phone with her. The only way to keep it on her is with tape and I know she would cut it off when I left the house.
    She uses a tinny pocket book around the house with all types of stuff in it so she dose not have to get up for stuff. With a trip to the fridge or something she dose not grab it.

    Lol darkeyed_daisy.
    My older brother cooked a pack of grape pop tarts for 3 minutes when he was 12. The house stuck for a week even after microwave was in the back yard.
    One of her class mates is gong to start stopping by around 10 and staying to 1 when I’m at work for a few weeks.

    We have looked into a service dog. We just don't know if it's the right choice for her. We have talked about just getting a pet dog and doing basic training to carry an alert system remote, but I kind of think it's unfair to the dog when we would have to live it at home for 9+ hours at a time.


    With her age I have to stay at the collage when she is there. We are trying to get the collage to drop the rule so next semester she can go to collage on my work days.

  10. #20
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    If she is falling, that could be a new episode.

    She does need to be able to get herself up out of the floor. We are the same level and I practiced and practiced getting up by myself until I could do it. I use a cane and I am stubborn about having my hands free in the house too. I have cleaned orange juice off the wall and had to have someone come in and clean the ceiling because I insisted on carrying it myself. LOL

    The difference may be that I am a flaccid injury and don't have spasms much. I do have the pain.

    The gas being on would have worried me too. I am glad you stopped her from cooking while you are not home. They just get too occupied to pay attention.

    A service dog could go everywhere with her so you wouldn't have to leave it home all the time. That would be really good companionship for her too. I don't know what I would do without my little dog. He entertains me.

    How about a cool lanyard to keep the phone around her neck at all times. We had to wear those with our ID's at work so it wouldn't be too cumbersome maybe.
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

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