Lurker in need of help with sister.

Re: Lurker in need of help with sister.

• Glendi428

  January 2012

  I'm sorry you're dealing with this tough behavior... I wish I had some insight, but I honestly have no clue. You sound like a good sister for wanting to help and support your family.
  

  When sisters stand shoulder to shoulder, who stands a chance against us? ~Pam Brown
  Big Girl 2.7.06 ~ Baby Girl 9.2.07
  

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• CrazeyJaneyR member

  January 2012

  I would try to find a new doctor. What kind of doctor does she see now?

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• Assembly_Reqd member

  January 2012

  Your local ARC may have some support groups or information sessions that could help. That is an organization I would have never thought to look towards with our dx. For some reason, I was under the impression it was an organization for people with Down's syndrome, but they have all sorts of programs. https://www.thearc.org/

  Maybe it is time to look into getting a behavioral therapist involved or a psychiatrist.

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• st.augbride member

  January 2012

  It sounds like she can benefit from a psychiatrist. A lot of mental conditions can develop for women in the late 20s to early 30s for the first time. My best friend's sister has MR (was born this way) and when she was 30 developed very severe bipolar disorder. Her behavior became very erratic and she would even leave the house at night and wind up in strange places. She has been much better since getting treated but it was very tough on her family until then. It also sounds like your mom should additionally get a second opinion from a different doctor too because if the first one offered no insight or helpful suggestions given the situation, then it sounds like a new one is needed.

  

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• MummyGruetzie member

  January 2012

  I also have a sister who has significant special needs and know that it can be hard to watch (as an adult with kids of my own) your parents struggle through this. I'd take a two-pronged approach: helping your Mom and helping your sister.

  It sounds like your Mom (just like any parent, but especially parents to an adult with special needs) could use some support. If you live nearby can you/any other siblings or family members offer to watch your sister?  Something like offering every Tuesday night or Sunday afternoon where its scheduled on a regular basis and your Mom can know even in the midst of a horrible day that she's going to get a break on Tuesday. Or offering to have your sister join you at church, etc? You didn't mention your Dad, not sure if he's in the picture. If your Mom is doing this on her own, this could be especially valuable. On my hardest days, knowing that my husband will come home and take over is what gets me through. If you don't feel like you could adequately take care of your sister, maybe you could just schedule visits more often that normal and set out a specific part of that to spend time specifically with your sister. Your statement, "I am not living at home so I can only go by what my mom has told me." makes me wonder if you're doubting the situation that your Mom is conveying to you. When your Mom is talking to you about what your sister does, whether or not there may be some exaggerations or personal perspectives added, she needs to feel validated and believed. So many people don't understand what we go through on a daily basis in terms of DDs behaviors. Honestly, most of it doesn't make sense. This isn't the way people are supposed to act, but its our reality. Validating someone's feelings and the story they are telling you goes along way in helping them. If nothing else, be the ear that listens and cares.  

  The other thing is helping your sister get the help she needs. This is touchy, because each family is so different and parents have different needs. Where one mom might welcome a recommendation to a local behavioral therapist. Another might easily see this as a slap in the face and another insinuation that "she's not good enough". As her daughter, you're a far better gauge of that than we are. If you're Mom is open to help, there are some options to look into. For a 30 something, a psychiatrist will likely look to medication. Is the program at Easter Seals meant for somebody in your sister's age group? What does your sister do when she is there? Does it seem likes she's stimulated or happy? Adult day programs have a variety of set ups, even with-in the same organization. Some offer legitimate work opportunities for adults who would not otherwise be able to handle a typical work environment and can be a very stimulating opportunity to not only become part of the community, but make friends at the same time. There are often dances or other social outings (bowling trips, etc) associated with these. Others are more of a recreation room, with a group of adults who appear to be zombies in front of tv. There is very little stimulation unless the adult initiates it and in many cases, the individuals lack the ability to self-initiate. This creates a pretty bad cycle. There may be "field trips" or "art activities", but in the worst cases adults are very belittled and treated without the respect than an adult deserves. There are also waiver programs that adults with disabilities can take part in. These also vary in quality. At their best, you can find a case worker who will help their clients apply for jobs/volunteer opportunities/activities/classes which are meaningful to the individual and then accompany them and in some cases offer any necessary supports and companionship. They can help the client set up a bank account, manage money, learn to cook, and increase their independent life skills. For the more independent adult, they'll help with the transition to independent living.

  Behavior consultants and therapists primarily work with a younger crowd. The idea generally being that it helps and the individual no longer needs it or it doesn't and they stop trying. Adults are also very set in their ways and much as a rule much less responsive to behavior therapies than a young child would be. Most people don't start trying at this age, so your family may find some difficulty finding someone in that arena who is equipped to work with an adult, but that's not to say that it won't help. And there are certainly people out there who will see adults. Other people who could help--speech therapists (depending on need--I'm guessing with your other info. that there would be). This may at least be a jumping point for an eval and recommendations for help, even if you don't go back for regularly scheduled therapy. There are special education teachers who specifically study adult populations and are able to offer good suggestions for life skills and general improvement of quality of life. I'm guessing your ES program has people with this credential--again there's a huge variety in quality and wherewithal to actually help the client. But the ES program knows your sister and should at least be a jumping off point. They should be aware of other community programs. Some people in a program like this are very willing to recommend other programs which your sister could do in addition to theirs. Others see it as a sort of betrayal to do something of the sort. Other parents from the ES program would also be a good jumping off point. When picking up you sister from her day program/ a dance, most parents would be pretty responsive to another parent asking who their son/daughter sees for a doctor and what other activities they are involved in... The other option if your Mom is at a place where she can no longer handle daily care/management of your sister is to look into group homes. These typically have very long waiting lists. I worked at one while in college where individuals were literally waiting for somebody to die in order to get their spot. Not a fun thought, but something you need to think about. Especially if you aren't sure you'll be able to take over when your Mom passes. In some areas, there are private group homes which are a tiny bit easier to get into, but only because they cost a lot and most people can't afford them. Hiring private help to come into your home sometimes becomes less expensive. If money isn't an private or non-profit programs are usually a good starting point compared to the public medicaid-based programs.  

  What does your sister do on the days when she is not at Easter seals? Does the inconsistency of the days there and the days not make it difficult to transition? If she has OCD-type behaviors and a strong need for order and structure, it seems natural that this might be difficult to transition back and forth from possibly very different scenarios. ... I hope your sister gets the help that she needs. 

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