How can I help my sister?

I’d appreciate it if any parents who have special needs children weigh in on this. I don’t really know where to start. The bare minimum explanation is that I’m unsure if I should leave for college because of my sister. She is in her mid 20s and has a learning disability which my mom discovered after the public elementary school my sister went to tested her. They said she would have noticeable difficulties in math and other subjects; according to my mother they also said she’d “never be able to make it in college” which I’m sure sounded ridiculous to my mother.

Now, my parents are immigrants from Africa and they didn’t really know much about learning disabilities or how to deal with them, so my mother hadn’t looked much into what it entailed for my sister. I’m pretty sure she was put into remedial classes and summer school all throughout her schooling. For most of my and my siblings lives our parents worked constantly(my dad owned a store then and didn’t earn much from it), especially while my sister was still in school, so unless my dad had to go to a meeting with my brother’s teacher about his grades or something of the like, they didn’t really pay much attention to our schooling, or what we did in general. So, considering this, there really is no telling what kind of education my sister received, though I know the schools she went to weren’t the best. After she graduated, she didn’t have any idea of what to do, so my dad took her to our local community college to sign her up for classes, even though I’m pretty sure she didn’t want to take them, at least that’s what she says now whenever she engages in a shouting match with my mother and the topic of going back to college comes up. She took the placement test they give everyone and she was told she had to take those classes that I think start with a “0” or something; basically they were high school level courses. She stopped going either purely because she failed the writing and math classes she took, or because she couldn’t receive some type of aid due to her failed classes, I’m not completely sure why. Anyway, this was after about two years, so she was 20 by then. Following this was a couple of years of doing nothing at home except for watching t.v. and going on the internet(of course my mom hated this, but she was just bored and was trying to keep herself entertained), I think sometime in between this, my aunt weighed in and convinced my mother that my sister should take a CNA course. I don’t know how they found the money to pay for it but somehow my sister ended up taking it, but she never took the final exam.

Periodically my mom would try to convince my sister to go to this organization that helps, in my mother’s words, people like her. After the first time my sister failed to keep in contact with them(she’s not good at speaking to other people, especially on the phone, it frustrates her) and if my mother tried to contact them for her, or accompany my sister to a meeting, she was told she couldn’t do so because my sister was over 18, and thus an “adult” and she had to initiate communication herself, which knowing my sister’s tendencies, would never and will never happen. I felt there was more hope about my sister’s situation when, in the middle of last year, my mother finally convinced my sister to meet with her counselor and sign a form that allowed my mother to represent her in a way and do the aforementioned things that she couldn’t before(although I’m not sure my mother was allowed in the initial meeting my sister had recently). I say this because I was trying to convince her to attend therapy, and she said her counselor had already suggested that and she refused, yet my mother had no knowledge of this. My sister doesn’t like the idea that she has a learning disability and adamantly affirms she doesn’t have any kind of disability, which is partially my mother’s fault but I’m not going to get into that. Anyway, because of the meeting she had with her counselor, my sister begun a technical course that will end even before I graduate, but because of a certain requirement my sister is unlikely to fulfill she most likely will not complete it successfully.

This truly is just the tip of the iceberg. I discovered, upon getting older and staying up later to do my homework, that my sister(we share a room)has these little, I guess you could call them either severe twitching or convulsions, which mostly impact her head. I brought it up to my mother recently and she said she’d noticed it too a while back, but she thought she was seeing things. She also mentioned that when my sister was much younger she was directed to a doctor who kept my sister for an overnight evaluation and told her that my sister wasn’t getting enough oxygen when she sleeps and should either get a machine that she would use as she slept or receive corrective surgery. I wasn’t aware of this until about a year ago and I can tell you neither of those routes were taken. Bear in mind that these tests happened when my sister was still young, my parents had insurance(I’m assuming), and my mother was…ignorant, I suppose, and unsure of what to do, I don’t know. My sister was a premature baby(not sure by how long) and according to my father she didn’t walk until long past the normal time for babies to do so, and when she tried walking she would never do it if she didn’t have something to hold onto next to her. I also was unaware of this until recently(we might live in the same house but we really don’t talk or interact with each other much-the first couple of years of my life I could go for a long while without saying anything to my father.) I don’t know if any of this contributed to her learning disabilities.

My sister doesn’t focus well and gets into fights daily with my mother about her situation and there’s so much more to say but I just don’t know how to help her because I can’t make her go to therapy, I don’t know how to get her the machine or surgery which would require her first making an appointment and she never will(I don’t know how we’d cover the specialist care anyway), I don’t know how to make my myself or my mother see or understand what my sister needs. I’m afraid to go away for college because things in my house have the potential to get worse in my absence. It around be unfair because while I get away from here she’ll be stuck here in the house day in and day out. There’s so much more about her situation that I can mention, but knowing this much what do you think I should do? How can I help her? All I want is for her to be happy and not frustrated and angry all the time.

@yemudo‌, I’m really sorry that you are bearing the weight of such a difficult family situation. There are resources to help people with conditions such as those your sister may have, but it takes time and persistence to find them.

I think it is very important for you to think about the situation in terms of both the immediate and long term support you can give your sister. In the long term, the best way to help your sister (and the rest of your family) is to get your education. Please don’t sacrifice your college plans to try to fix the situation at home. College will improve your ability to help your family in every way–as a college educated adult, you will have more financial, intellectual, emotional, and social resources to bring to the situation.

In the short term, you may be able to help set your sister on a better path by helping your parents access the medical and other resources to which she is entitled. That’s a very big task for a high school student to tackle, and you will need some experienced adults to help you. Do you have a counselor, pastor, family friend, or other adult you could talk to about this?

Perhaps some CCers can help, too, with a little more information (without violating your family’s privacy).

  • Is your sister a US citizen? That will make a big difference in what services she is entitled to.
  • What state do you live in? There are different social service agencies who can help, depending on the state.
  • Has your sister received a specific LD diagnosis?
  • Does your sister have a family doctor or is there a clinic your family uses? If so, she should schedule a checkup right away and should bring you along to describe to the doctor what you have seen. The doctor can order tests, such as a sleep study, to figure out what is going on.

These are some of my first thoughts. Please take care of yourself. Finish your school year strong. And don’t be afraid to reach out to an older adult for help.

Obviously, you have not been able to get your sister off the couch. You live in a toxic environment, but might have the chance to do better than your siblings. Grab that chance and let the adults in your life trying to act like adults.

Concentrate on YOUR next steps and do your best to insulate yourself from the family dramas. You will not help yourself or them if you become … one of them. Stay in school and count on yourself. Let your family deal with their own self-inflicted wounds.

You owe it to yourself.

As @xiggi said, let the adults in your life act like adults. Your responsibility is your own life.

But if things do not improve with your sister, eventually she may become your responsibility – financially and in other ways. And you will be best equipped to deal with that situation if you have a good education and a good job.

I think you need college more than most people do, both for the short-term reasons xiggi focused on and because your sister may become a financial burden to you in the long term.

When you’re in an airplane, the flight attendants have a standard speech about emergencies. One particular part deals with oxygen masks. The direction are: First, place the mask on your own face, THEN assist the people around you.

Your first concern needs to be your own education. You’ll never be able to help your sister without it.

OK, next: what are your sister’s interests? What were her favorite subjects in school? What does she enjoy? Does she bake, babysit, enjoy travel? Can she see herself working in customer service? Can you help her define what she wants to do with her life, how she’s planning to support herself? Can you picture the two of you going out for lunch and having a calm conversation on the subject?

The reality is that not everyone is good at academics, learning disability or not. But everyone needs a job. They need medical insurance. They need a way of paying rent and food. At some point your parents aren’t going to be around, and your sister will need to provide for herself.

Any steps you can take toward helping your sister define what she wants could make a big difference to her.

I wonder where she could take one of those tests they give to kids in high school to help determine a career path?

First, I want to thank all of you parents who replied with advice. I was really upset over a fight that my family had and that’s what finally made me post this and I’m really thankful for your help.

@lonestarmom‌
I think I can talk to my sister’s counselor, but she’s only in her office on certain days and at certain times when I’m usually in school. My mom is more likely able to get in touch with her.
Yes, my siblings and I are U.S. citizens. My parents have citizenship, too.
We live in Texas and have been here all our lives.
My sister has not received a specific diagnosis, as far as I know, but then again I wasn’t born when she was tested, so maybe she did but my mother has forgotten or wasn’t aware of this. I also have questioned this before, because seeing as she has a learning disability, wouldn’t there be a specific name or information on it?
Recently, after not having insurance, my father sought out a plan for our family and my sister is now insured under BlueCross BlueShield of Texas. My mom worries that some things, like a sleep study, would not be covered on it to the extent that they would be if my sister still had a Gold Card.

@‌xiggi I plan on doing as much, thank you.

@Marian‌ My sister most likely will not be able to support herself(she can’t drive yet either) in the future, so I understand what you mean. I know I’m very lucky to get into the schools that I have, especially considering how little I will pay because of their wonderful financial aid policies. I just haven’t been all that happy with each acceptance because of this.

@ bjkmom My sister does have interests like reading(this is one of the reasons that made my mother discount what she’s been told because, if my sister is so inclined to read then surely she can study and do well in school) and baking. I know my sister can be a calm person, she’s often just bored at home or frustrated by my family and school and that’s what makes her act the way she does.
Sometimes I wish I had taken easier classes in high school and gotten my licence as a sophomore, so I could take my sister places instead of her always being stuck at home but it’s useless to focus on what I cannot change.

Thank you again for your comments and kind words.

Would your sister be interested in working in literacy, working with adults (usually at the library) teaching them to read? Would she be interested in working in a library? A book store?

Not everyone needs a “career.” For a lot of people, a “job” is a much better fit. The thing is to get her doing something she enjoys enough that she’ll get off the couch and show up.

As far as a name, I’m certainly no expert, but I think what you’re describing in terms of sleep is known as “sleep apnea.”

You’ve thrown a lot of stuff out there-- possible sleep apnea? Seizures? Hallucinations? Learning disability? Emotional/behavioral issues? As others have said, you are kind to be concerned, but this is not your issue. Take care of yourself and get your education. You mentioned therapy but then said your sister has a counselor already. Can you clarify? If you sister wants help, she has to own it .sadly, you can’t do that for her.

At what age was your sister evaluated? You weren’t born when it was done? How much younger are you? If your sister was in elementary school, its time for an updated eval, especially now that she has insurance.

I see what you mean, it’s likely she does have some form of sleep apnea.
As far as a job goes, if you ask my sister what she would like to do the answer is typically “I don’t know”.

@jym626‌ Sorry, I know it’s a lot. I’ve never put it into words before and it’s overwhelming even me looking at it.
My sister has a counselor under the organization my mother found that helps adults with special needs gain any technical training they might want or help in a job search by targeting employers that understand their needs.
I’m pretty sure my sister was evaluated when she first started public school, so perhaps in Kindergarten or First grade.She is about 7 years older than me and I wasn’t born yet when she first entered school.

You can best help your sister by pursuing a college education that leads to a career where you are financially independent, debt-free, and have resources to help her when she really needs help.
Right now it sounds like she is muddling through but not in crisis. What happens when a crisis hits (which will eventually happen because that’s how life is)? Who will be in a position to help her? Future you with just a HS education and a low-paying job(s) and no savings, or future you with a high-paying career and savings?

Sorry for the typos, I’m on my phone and it won’t allow me to edit my post.

Your sister should have an updated medical evaluation.
Did you mother keep her files from the first evaluation?
Does your sister have a LD or a form of autism?

Your job - and responsibility if you want to help your sister and your mother - is to get the best education you can. Your sister may sit on the couch one year more, but really it won’t change much since she’s been doing it for a couple years, whereas if you put your plans on hold, it’ll change your whole life - derail it, and theirs too.

I’m not sure if my mother still has those files, it’s been quite awhile. For all I know she could be on the autism spectrum, but I doubt it, or if she is, it is not a severe case.

While having access to the old report is helpful, it isnt necessary. She needs a good, thorough, updated evaluation. But thats between your mom and your sister.

yemudo, maybe you can ask your guidance counselor if s/he knows of community resources.

It’s a very, very difficult position to be in, for sure. Of course you worry, she’s your sister and your parents likely aren’t savvy like CC parents, lol. Give it a shot but don’t get trapped. No one will benefit from that.

If your sister was screened for LDs when she was in school, and if she received any services then, records of her Individualized Education Program (IEP) or 504 Plan (or both if she had both) should still be on file somewhere in the school district’s archives.

They probably purge those records when the student reaches the age of majority. Not sure if they are required to keep records as long as healthcare providers are, and this varies by state.

I agree about community resources. There are programs for jobs for people who have learning/mental issues. For example:

Vocational Rehabilitation for Persons with Physical and Mental Disabilities

http://www.dars.state.tx.us/drs/vr.shtml

But I agree…in the long run, the best thing for you is to obtain your college degree.

That is actually the program my sister is a part of right now. I agree that they are very helpful if you take advantage of the resources, but my sister isn’t often inclined to speak with her counselor. If need be I remind my mother to contact them.