Nov 2009 Book - Still Alice

[Nasoosie]

Reading Tina's post was far better for me than reading any number of books-----Thanks, Tina! I love to read about other's experiences in life, and particularly, right now, from someone who has dealt with the types of students I have in my class.

What I am finding most difficult is to believe the IEP reports (Independent Educational plans) for my students. I KNOW, for a fact, that two of the kids who are labeled 'retarded' are no more retarded than I am....but they don't how to communicate what they know. And NY State, in order to get them 'classified' needs to put a label of retarded on them. It infuriates me. They have been labeled and pigeonholed with this label because they were intelligent enough, as emotionaly disturbed persons, to refuse to answer the 'specialized test' questions that are supposed to measure intelligence. They HATE tests, refuse to even try to answer them, and deliberately put down wrong answers just to get 'it over with.'

Also, the autistic students are totally different, and only one would I call typically autistic, if there is any such thing. He is quite isloated in his own world. The other has emotional problems and physical disabilities due to lack of any exercise whatsoever, but shows almost no signs, if any, of autism. He has a fantastic brain trapped in a body just like Lurch from the old TV Show, the Addams Family. The plans they have set up for these kids are not realistic whatsoever, as what so many of them need is training on how to manage anger---how to learn how to respect themselves----how to learn to communicate better and more effectively----the hell with trying to learn any 'typical high school facts and figures' when your life is so messed up you can't even manage yourself and your own thoughts.

I am feeling so completely useless and helpless with what I am trying to do, and each day I modify what I am doing to try to help these kids----regardless of what others are thinking they should be doing, or what others think I should be doing. All they can do is fire me. But the kids are beginning to show so much more enthusiasm for life that I don't think I will be lucky enough to get fired!

I have to constantly remind myself to not be afraid to show my anger when they make me angry purposefully, and not be afraid to show when they hurt me by things they do. I don't know if others who have worked with them in the past have never been honest with their own feelings before, or not, but I have to be----and these kids seemed shocked to know that I----an adult----can feel anger and hurt feelings. My emotions are strongly demonstrated, and then quickly forgotten----we start over each half hour, or so----so they know I don't hold grudges or stay angry or sad for very long. They seem to find comfort in this fact, so I have to remind myself that I guess my true feelings and responses can't be all that wrong for them.

This job is exhausting.....totally exhausting. Some days I want to just quit----walk out forever. Some days I need to go online and study emotional disabilites. Some days I need to just go to bed. And some days I get to read a great post that makes me realize I am not alone with the feelings I have about this job and my kids, and it gives me the incentive to persevere.

Thanks, Tina!

[BirdbyBird]

Okay now for hijacking the thread......Soosie you are so right to look at communication skills as key...to emotions, to expressing needs, wants, wishes and desires.......think how frustrating it might be to NOT be able to express those things...even better to not ever be truly given many choices....or even better if no one believes you have the capacity to choose!.....Leave No Child Behind....did some good in making educators look again at students that had been left behind because the adaptations to include them were "inconvenient" like ramps and nursing support but many of the educators still did not know how to best serve some of the most challenging....because the IEPs suddenly had to be in line with state curriculum and as you so pointedly noticed the basic skills that are needed are still communication and "playing well with friends" .... Many individuals with or without identified disabilities make productive contributions to their world without typical academic skills.....if they have a means of communicating and basic social skills or as we know it (good manners). These are the skills that permit them to be more fully part of their families, their communities and the world. The rest is gravy.

I also found that students seemed to always figure out who "respected" them and more often than would give back what was modeled....Individuals with disabilities and including the "Alices" of the world are always more like us than they are different. So often that is forgotten.

I like the idea of expressing real emotions for the students...as long as the consequences for "poor choices" comes from a neutral place. It always reminded my staff that it is not a power struggle to see who wins...the student always has the power one way or another....But he/she should understand the consequences are different depending upon the choice...a Good Choice...or a Poor choice? The student is the one that effects the outcome of the choice not us. But that means they have to learn "how" to make good choices...and experience that good things happen when positive choices are made.....

I also spent a lot of time teaching my staff the use of the statement "Not an Option"...usually used, for example, when objects were being thrown at someone's head, or the fingernails came out. I reminded staff that if the words "No!" screamed emotionally were going to be effective in the long run they would have already worked years ago. No and Stop were usually overlaid with so much historical emotion and garbage...we tried to use, in a neutral voice "Not an Option...which meant that , yes, we provided different choices throughout the day...but this action was not on the table for discussion..... There was no need for a bunch of words when a few will do!

Adults also forget that there are often language processing lag times with many individuals...including older "Alice" individuals! Because the individual does not respond in what we think is "normal" response time, we repeat the statement or say it another way, or get angry...... A brain which processes language slower (maybe even 30 sec slower)...then has to start processing ALL OVER again! Some times being patient and allowing wait time is important.

Most frustrating to me were the adults and educators that insisted that the individual knew better and just weren't trying..or just didn't want to cooperate..... Many brains do not process verbal language as well as for example...pictures or even written words. It is another one of the mysteries of the brain. There have been individuals that would "Stop" a behavior when shown a picture of a red stop sign with the words stop on it but appear not to even hear the word....hearing and processing and understanding are different things!

Each individual is unique in how a disability effects them...there are general concepts to start with but it is so important to keep trying to find the right fit for each at the right time..... Love the educators that would actually state,"We can't do that for him/her, because we don't do it for anyone else." Duh...what about it being an INDIVIDUAL Educational Plan.. Nursing Homes and Care Facilities are required to draw up INDIVIDUAL Care Plans for individuals, too.....it is important that families know their rights and responsibilities..... "Alice" needed and received individual care and support to address her unique needs given her background and education levels and the capacity of her family to support her. Unfortunately, not all professionals are equally talented or to be trusted to have a family members best interest at stake..... The author in the book used a character and a family well equipped educationally and with resources and connections to tap into excellent expertise....I just kept thinking of so many of the rest.....that don't have the resources....

Soosie, hopefully you have the access to good speech therapists and occupational therapists......there are so many techniques that can help establish communication and ability to express thought,...some of them very low tech and inexpensive...you have to make them usually.... and another area you might be interested in is Sensory intergration (ask the OT)....it effects so much...for all of us...just in different levels ...individuals with Autism are generally greatly effected but each in their own way..... e-mail is dogsandpeople@yahoo.com And I promise not to hijack the thread again! maybe....

[Bethers]

Just a note that some of us with hearing disabilities will recognize - we don't always respond because we don't hear something, or if we do, it sometimes takes longer to get into our brainwaves because of processing it with all the other sounds we hear. In that way, I sometimes can feel like Alice. And in how people respond to me. People can get very frustrated, or talk very loudly, but still facing away from me - and therefore doing no good. We all need to learn that we ALL have some type of disability and it's not something to be ashamed of nor is it something to treat people poorly over.

And, yes, Soos and Tina - communication is sooooooooooo important.

[Sparkle]

Beth and I have some really interesting conversations. I'll say something and she will earnestly reply on a totally different subject. Usually I just go along with it and think, okay, this is interesting. But sometimes when I need an actual answer I'll have to stop her and say, wait a minute, that's not what I asked.

[Bethers]

Nah, she never says "that's not what I asked" - she hits me upside the head and yells at me.

Seriously though - it's nothing more than hijacking the conversation - kind of like this thread has gone

[PeggyinCT]

Hi Everybody from Japan,

I haven t finished the book yet. I m at the point where she has started the support group and doesn t know that the beep beep is her blackberry. So I m wondering if she remembers her plan to swallow the sleeping pills.

I used to live in Cambridge, so I can tell you that the author is describing real places and while Alice is fiction, I m sure that all the medical information in the book is acurate as well.

I m living with Japanese families for two weeks and everything is in Japanese and my brain is tired. We take understanding for granted until we are in a place where we understand nothing and really have to use our brains and common sense to figure out how to flush the toilet.

Soos, I could hear your frustration with your school situation. I teach English as a Second language to recent immigrants, and the curriculum is driven by what is on the CASAS test. I too ignore the curriculum when my students need know some particular thing right now. Hang in there, we need good teachers like you.

[Echo]

I haven't really been following this posting as I haven't read the book and can't really bring myself to either.

Tina the two posts of yours that I read were beautiful and so very, very true.

Having worked with clients at a UCP House and having worked geriatrics for a long while, emotions good or bad is sometimes all the communication they have. It pays to pay attention and to learn from them. When you pay attention and learn not only is their life enriched but so is yours. In more ways than you can believe or understand at that time.

Having lost my Mom to cancer and watching her slowly fade away and not remember "today" or who I was a lot of times was so hard. Yet the night before she died the clarity in her eyes while we talked for the last time was stunning. And that she repeated things that we had talked about during some of her foggier times were surprising.

Never ever underestimate emotions.

[oregontocal]

This is the first time I've checked this thread and I love the different points of view and conversations. Since my mother is 84 and beginning to show the signs of memory loss, etc., I'm going to find and read this book.

[BirdbyBird]

for those of you that have finished it...rereading Peggy's questions made me think again regarding the comment that the author made in the intro.....that she had been encouraged to change the ending and she was glad that she had.....makes you want to know what the original ending dealt with....

[Bethers]

Chris, I have the book - will loan it to you - I'm keeping it to read again - but can loan it.

Tina, I've wondered that also. I'm happy with the ending, but wonder what it might have been.

[oregontocal]

Thanks, Beth. I don't buy many books anymore for lack of space to keep them. Such a far cry from the 40 boxes I sold in moving into this little RV.

[JanetA]

I'm not dealing w/ altzheimers but I am dealing w/ daddy's dementia and that is ENOUGH of a trial for me. I am thinking I might NEED to read this one.

Thanks, gals. I will look for it online and when I'm out and about. Does Walmart have it? They have most current best sellers. I might even look @ the library as i hate to buy books... i'd rather "rent" them..

Janet

[oregontocal]

An update on this book: I borrowed Beth's book and read it while at Mittry Lake in Yuma. Excellent, excellent book. Last night I ordered a copy from Amazon for my mom. Her younger sister, age 79, was just diagnosed with Alzheimer's and the family is taking it hard - not sure how to act or what to do. They're just going day by day. The kids have put their mom in a nice assisted living center in Pasadena, CA, near them, and my mom will be driving up there tomorrow to visit her.

[AlmostThere]

There has been a movie on TV starring Dame Judi Dench, called Iris. It's about her and her husband's lives dealing with her Alzheimers. Here is a blip from the review of the book from Amazon.com. I really enjoyed it. Perhaps those of you who enjoyed Still Alice would like this one, too.

Iris teems with fussy charm and the intimate joy found only in a lover's foibles. Adapted from the memoirs of literary critic John Bayley, the film recounts his courtship of and long marriage to British novelist Iris Murdoch. The scenario tacks back and forth from the young Iris (Kate Winslet)--ready to seduce one and all with her coy command of words and sex appeal--to the elder Iris (Judi Dench)--slowly giving way to the cruel erasure of Alzheimer's--and it is impossible not to be moved by the film's denouement of loss. Ms. Dench is, as usual, resplendent, tossing off literary quips, knowing glares, and razor-sharp metaphors with graceful ease. The pleasure Murdoch took in what must have been an extraordinary life is palpable every second Dench is onscreen. Jim Broadbent is also especially fine as the elder Bayley, steadfast in devotion and humor. The script, however, is painfully predictable and heavy-handed in its frequent use of symbolism (e.g., sheets of paper flying into the ocean, rocks slipping to the river's bottom). Nevertheless, Iris evokes a passion for learning and intimacy worthy of its subject. --Fionn Meade
Here's the powerful true story based on John Bayley's novels that earned Jim Broadbent an Academy Award(R) for Best Supporting Actor and Academy Award(R) nominations for Best Actress Judi Dench and Best Supporting Actress Kate Winslet (IRIS, 2001). Judi Dench (SHAKESPEARE IN LOVE) and Kate Winslet (TITANIC) bring to the screen one of the most extraordinary women of the 20th century, celebrated English author Iris Murdoch. As told by her unlikely soulmate, husband John Bayley, Iris first became known as a brilliant young scholar at Oxford whose boundless spirit dazzled those around her. Then, during her remarkable career as a novelist and philosopher, she continued to prove herself a woman ahead of her time. Even in later life, as age and illness robbed Iris of her remarkable gifts, nothing could diminish her immense influence or weaken the bond with her devoted husband.