Case management meeting today, Difficult Child turns 18 in 3 days...

Discussion in 'Parent Emeritus' started by ksm, Mar 17, 2016.

  1. ksm

    ksm Well-Known Member

    I think the people on the case mgt team will continue benefits until the end of the school year. We have to have these meetings every three months, so probably have one in June. Of cause Difficult Child could sign off on everything by next week. I won't be getting info unless from professionals after this point, unless she signs off on it. To be honest, I am not sure how much I want to be involved in the future.

    We will keep her on our family health ins. policy, but I will change her to her own account at the local doctors office and dental office. She will still have state insurance, unless she signs off on all services, at least until the next case plan. I am going to sit down with her and say, I am willing to pay the following copays: 2 dental checkups a year, 2 yearly family doctor visits a year, and once a month mental health visits. Of course, if she keeps services, and has a medical card as secondary, we/she would not have any copays. She is a bit of a hypochondriac...always feels that her pain, illness, etc is Emergency Room level.

    We have applied for disability, not sure if she will even qualify, her diagnosis is are: static encephalopathy, alcohol exposed, ADHD, anxiety, depression.

    I have always been her external brain. She doesn't really know what she doesn't know. I have tried backing off of reminders. Yesterday after school, I mentioned that she worked today, and did she have clean work clothes? No...she needed to do a load. Came home, watched TV, ate supper, then went to a friends house. Back at 9pm. Watched tv. About 9:15 - light bulb went off, and she said she needed to get a load in the wash. 10pm, I had to leave to pick up younger daughter after choir trip. Asked if her if she started a load...oops! She said a friend asked her to check on the scores for basketball distracted. I got home at 10:45, she had started a load, still running. Fast forward to this morning, she didn't set an alarm for school, or turned it off. I woke her up at 7:15. 7:30, I asked if close to be ready, she said no, because little sister wasn't near ready. I told her the choir director gave them an extra hour to rest...then she was mad because I didn't tell her that. Basically, she drags her feet, and if she is late, she blames it on someone else.

    She was late for school...I almost always make two trips to is about 12 not a big deal. She knows she doesn't have to wait for younger sis...

    Anyway, i am rambling. She will "talk the talk" at these meetings...but they never see the back story. She has such poor executive function skills...but has good verbal skills and good IQ. They probably see her as above average from other people who are visibly more challenged. What they don't see is that her successes are because I am there, helping her to get thru school, running interference. But I can't do this from a distance, or with one arm tied behind my back.

    I think they are setting her up to fail... KSM
  2. InsaneCdn

    InsaneCdn Well-Known Member

    I know the feeling.
    Sometimes I wonder if I ran too much interference. Maybe if they had seen how bad my kid really was, we could have had more help. BUT. Then we didn't want him to see himself as disabled, and not put in effort. It's a catch-22.

    There was no right answer, KSM. You did the best you could.
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Are they testing her? Are they not looking at her life skills ability? They did with my son so he got adult services and ssi. He also appears high functioning and has a normal IQ.
  4. Childofmine

    Childofmine one day at a time

    KSM, if you can, go ahead and ask her to sign off on the HIPAA forms so you can get information about her. Even if you don't think you want to know it right now, there may (I predict will) come a day when you would give anything to be able to find out how she really is, what is going on with her care, and if she has been doing what she says she has been doing in terms of compliance. Not being able to find this type of information out was a huge problem for us in so many ways. JMHO
  5. ksm

    ksm Well-Known Member

    Thanks InsaneCdn... I was just thinking about last week, she worked 4 days in a row, and never washed her black shirt for work...and not sure if she bathed those 4 days. She always says she is going to do something, then gets distracted. She leaves her stuff all over the house, and I pick it up and put it on the bottom of the stairs leading to her room. The pile is so big, you can hardly go up and down the stairs. Does she ever carry it on up? No. Last night her friend tripped on it and almost fell. Sigh... KSM
  6. ksm

    ksm Well-Known Member

    Basically they are telling me that she is doing well, has not been self harming or using substances. Like I said, she talks a good talk. They said she probably will lose her medical card and benefits at the next appointment in 3 months. Difficult Child had to leave a few minutes early to head to work, and I tried to explain that she only looks successful because I am her external brain. That she needs reminders to bath, wash clothes, get up for school on time, etc. school has always been a struggle, and the only reason things are better now is all classes are electives that do not require homework...just showing up and maybe a small amount of participation. Like day care aid for the school day care. Office aid for attendance office, recreational games...which includes board games and cards, cooking class, and a computer assisted class.

  7. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    thats why I ask about testing. You cant help her test. Also they asked me about things like memory, hygiene and other basic skills that my son did poorly at because, due to his disability, he didnt fo becsuse he didnt think things like bathing mattered. Or wearing smelly clothes. He also once needed a guide for him to stay on track. A "normal" kid can succeed on his own.
    Maybe, even at your daughters age, a neuropsyche evaluation can help her continue getting services. It helped my son. He was retested at 17, in his senior year of high school. It validated that he was on the spectrum, albeit higher functioning. He still does need some services although he is basically doing well.
  8. New Leaf

    New Leaf Well-Known Member

    Just wanted to say I am following along Ksm and hope for the best. Hang in there.....
    ((( hugs)))
  9. Roxona

    Roxona Active Member

    J's senior year was the same way. All he had to do was show up, and they would be happy to jettison him out a side door without a proper diploma. Be careful. The moment J turned 18, the school threw a huge brick wall at me. They told him I no longer needed to be involved...period. I was the only one fighting for his education, and they didn't want anyone fighting against them. I was fighting for a real diploma and the education to go with it, instead of a certificate of completion that looked like a real diploma, but didn't hold the same weight because he wasn't going to be able to pass the SBA tests which students are required to pass in order to graduate. Oh! But they didn't give him an Algebra II class, and guess what?! There are Algebra II questions on that test. Yeah...he's going to pass that for sure...Not! They were completely setting J and a bunch of the other special education students up for failure. My blood boils just thinking about it.

    J didn't care about school. He wanted to drop out, so there was no way he would sign anything giving me any right to fight for him. The only leverage I had over him to stay in school was the truck I gave him when he turned 18, but kept in my name. He graduated with a valid diploma 3 months after he turned 19. Boy was that a rough year and 3 months! Whew!

    My advice is to get everything sorted out in your favor as quickly as possible. I hope you have better schools and better teachers than we have. I'm sending you all my best wishes.
  10. ksm

    ksm Well-Known Member

    Roxona, my J didn't have any special classes...but barely squeaked by the required classes. She won't have to pass any final evaluations to get her HS diploma. She had considered switching to a GED Plus program, but that would have involved passing exams, so she stuck it out. I did get a 504 Plan in place two months ago. It can follow her in to college, if she goes... She talks about it, but I know it will be very difficult for her. She has never been able to study, do homework, and turn it in. I would like her to take one class...and see how she does, before signing up for a full load. KSM
  11. InsaneCdn

    InsaneCdn Well-Known Member

    KSM - this trait tends to show up more often in kids with developmental challenges - autism spectrum, fetal alcohol exposure, etc. It's like there are "holes" in their brains, and when something falls into a "hole", it gets lost.
  12. soapbox

    soapbox Member

    Highly distractible, no follow-through, "holes" in their brains...

    Could also be a casein intolerance. Casein is the major protein in milk. There are multiple types of casein. Different types of milk have a different composition of casein.

    For some of us, casein is like a mind-numbing drug. Slows down our thinking, inhibits storage and recall of plans and intentions, contributes to losing items (we don't remember where we put them or that we even had them).

    Have you ever tried taking her onto a dairy-free or casein-free diet?
  13. ksm

    ksm Well-Known Member

    Soapbox... We have never tried a dairy free diet...I will google it, but I don't think I would have much luck as she plans to move out soon. Plus she is a very finicky eater. She does eat cheese, like Mac and cheese, nachos, etc but will rarely eat any fruit or vegetable. KSM
  14. soapbox

    soapbox Member

    If casein is a problem, it can be like an addiction. I was taken off milk when still in elementary school. The difference was huge, and even I knew that. But I had - and still have - this incredible craving for milk, cheese, and ice cream. It's scary sometimes. When it hits really strong, I have to go out and buy a non-dairy treat to keep myself from raiding the cheese drawer. And I'm a fully-functional adult who knows what is going on with this. So I understand the challenge here.