Special Needs Trusts - Planning Ahead

In an earlier post, I mentioned a Special Needs Trust.  Anyone who has a loved one who has been declared disabled whether by a brain disorder/mental illness or by birth inabilities or by accident, to name some examples, would be wise to investigate this option when thinking about the future.  One does not need to be wealthy to think about this.  The goal is to make sure that if there are any assets left to pass along to a loved one, that those assets do not interrupt legal benefits; for example, disability payments (SSI), special housing allowances (Section 8 Housing), and medical care (Medicaid).

Typically, assets from the Trust may not be used for housing or food but can be used for other purposes such as health benefits not covered by medicaid or not available through medicaid sources.  This document needs to be prepared very carefully  by a knowledgeable attorney.

The Special Needs Alliance has set up a website to provide more information about this subject.

The National Alliance on Mental Illness,  its member associations, and other organizations have also published articles on this important subject.  By typing in the words "special needs" in the search engine of the nami.org website, one can access a wealth of information.

Reflections on my recovery - getting to the real feeling underneath it all

Earlier today, thanks to a post on Ed-Bites, I started thinking about the word “upset”.  After looking at various dictionary definitions, I decided to consult my thesaurus and then the on-line thesaurus and found that the synonyms there reflected what I am really feeling when I use that word.

I’ve struggled with others’ anger for as long as I can remember.  I don’t like it.  Anger used to frighten me and still makes me feel uncomfortable.  Anger stirs up images of someone out of control.  Anger lacks one letter – put the “d” in front of it and that’s what comes to me -- danger. 

Growing up, I often heard phrases like “children are to be seen and not heard” and “if you can’t say anything nice, don’t say anything at all.”  I remember one Christmas getting a set of records (this must’ve been around 1954) with a little girl’s voice telling the listener ways to be polite.  Fortunately those records disappeared a long time ago.  What didn’t disappear was my internalized sense that anger is not to be expressed; that I was to conduct myself with poise and dignity and a stiff upper lip, like my mother (who in the last year of her life expressed wistfulness that she had not taken advantage of therapy herself). I was supposed to be nice.  Gosh, that just reminded me of a long correspondence (written) I had with a friend about the meaning of that word.

Yet, the adults around me (and I don’t mean just in my house but even in the world at large when people argue about things like country boundaries and rights) didn’t hesitate to get angry and to fight.  I remember (and still feel this way) how awful football and boxing and other pugilistic sports were when I was younger.  I remember feeling horrified when a young man I was fond of told me that he loved wrestling.   To me, and the season is upon us, football is one long continuous murder and mayhem with short intermissions.  I don’t watch it.  That’s my choice.  I do have a choice in the matter now.

I’ve struggled with expressing my own anger for all of my life.  I think part of my distress around this feeling is that I'm afraid that I, too, will lose control like some people I've known. This past Spring I again retreated after indirectly being attacked for something I neither said nor meant. The thing was, I realize now that I was really angry that the people involved didn’t come to me about it yet because I so often squash my feelings (still), I didn’t know it.  I immediately went to the inner world of rejection and sadness – a place that yields depression. That was until a recent Satuday when following Mass, our wonderful progressive priest expressed anger and indignation because someone left him an anonymous note to which he said he was not given the opportunity to respond.  His remarks were succinct and much more in depth than I present here.  There I was in the pew finally coming to understand that my anger was legitimate and it was okay to say so.   

I realize this may sound naïve.   I also know this reaction is more likely to happen when I’m tired and overwhelmed and I was both at the time last Spring.

I had turned that anger inward and that anger had exacerbated my already deepening depression about my loved one’s illness and about my sense of trying to establish a new perspective as the oldest living person in the family to whom my sister and others were turning for help while still mourning the recent loss of my mother, my father having died a decade before.  My husband had gone through a medical scare a couple of months before, too.  It was a very unsettled Spring.

 I need to remind myself all the time to take a time out, to allow myself to really feel what’s going on in my head and body, to take responsibility for my own reaction/response and then express it appropriately rather than literally swallow it to a place that makes me sick.

Reflections on Perfection

I'm working my way through materials I received from the residential facility where my loved one is receiving treatment.  I agree with the observation, to draw from the closing paragraph of one of the documents, "... it is amazing to watch the courage of people with eating disorders.  That some are still alive after battling sometimes from twenty to thirty years should be a lesson to humankind.  What residue of hope encourages these individuals to get up every day and try again?  Their survival would seem, by normal standards, to defy all odds!"

This paragraph is taken from a section titled "Confirmed Negativity Condition" (CNC) found in the book, The Secret Language of Eating Disorders by Peggy Claude-Pierre (1997, Random House: New York).  I have not read this book although I have read others' comments about it.  On the surface, it appears to echo others' observations that eating disorders seem to spring from negative thought processes that dwell in the minds of some people.  Claude-Pierre postulates that people have a predisposition for CNC and believes it can manifest in a variety of ways; for example as panic attacks, depression, and obsessive-compulsive disorder and eating disorders.

This is the first time I've encountered her characterization -- CNC -- of this trait.  I have read and seen recently in the literature that anxiety disorders precede eating disorders in more than 60 percent of those diagnosed.  Those of us who characterize the eating disorder side of our loved one as ED will learn in this piece that the author refers to ED has the Negative Mind.  The person has an Actual Mind, too, which gets lost under the burden of all the messages that come to dominate as the person slips further into his/her eating disorder.  These messages can still lurk there in spite of being recovered.  As I wrote in an earlier piece, mine cropped up when I was struggling with the concept of taking a medication because I could not manage my depression on my own.

I am also intrigued by this piece because the author tackles the concept of loss of self, similar to the work of Sheila Reindl in Sensing the Self.  Both identify something that I struggled with for years until I found myself through a lot of work. Part of this work involved letting go of the need for perfection and the Claude-Pierre describes this as "....prov[ing] their worth to others because they lack an internal sense of self."

So today, along comes a terrific article written by Brene Brown for CNN.com titled, "Want to be happy? Stop trying to be perfect."  As Rene Brown writes, "....A deep sense of love and belonging is an irreducible need of all people.  We are biologically, cognitively, physically, and spiritually wired to love, to be loved, and to belong.  When those needs are not met, we don't function as we were meant to.  We break.  We fall apart.  We numb.  We ache.  We hurt others.  We get sick." 

ED or the Negative Mind gets in the way of our ability to realize that we are worthy.  Absolutely, this was the case for me.  Once proper nutrition is brought back into the life of one who believes otherwise, the next step -- and it is huge -- is to work with the person to provide them with tools so they indeed find themselves, love themselves, and get on with their lives.  Sometimes this process takes years.  Sometimes this process takes multiple treatments in a residential treatment center and long hours in therapy.  Sometimes one needs to get beyond developmental blocks to get onto the path to recovery and to take these tools and run with them.  Sometimes it's a gradual awakening; for others it can be a turning point.

It takes a lot of courage to do this.  Those who have been fighting this disease for years and years do have that essential ingredient, courage.  They and we need to nourish that spark.

P.S.  In connection with this post,  I forgot to mention an excellent illustrated (very blunt and startlingly honest) little book written for children ages 9-12 by Nadia Shivack titled Inside Out: Portrait of an Eating Disorder (Ginee Seo Books, Atheneum Books for Young Readers, 2007).  [From the book jacket.] "At an inpatient unit of a hospital where she was taken for treatment, Nadia wrote and drew on napkins after meals in order to keep the food in and calm the outrageous voices in her head.  These pictures, together with others drawn on notebook paper and a variety of other surfaces, tell an unflinchingly honest story of a woman's lifelong battle with anorexia and bulimia."  The drawings are very simple.  She drew several to illustrate how little and lost she felt within the belly of this insatiable beast with many voices called ED.

Reflections on roles and behavior -- Men and Boys

As I have learned from group therapy, so I have gained from my weekly meeting, which is my expectations that were reinforced while I was growing up aren't necessarily reality.  I also am coming to believe and understand that father hunger isn't something that only girls experience, but also boys.  And finally, I have learned through the candid and sometimes chokingly emotional deep sharing of men in my meeting, that they have stuffed their feelings and know how destructive that has been for them and for their children.  I am very grateful to have discovered this program and to be privy to the thoughts and dreams of people who in the outside world, meaning outside of this room, are regarded as the man but in our sacred space are, in fact, more than that, and not just because they are willing to look at themselves and change.

Clinical psychologist Margo Maine, who is one of the editors of Treatment of Eating Disorders - Bridging the Research Gap, is also the author of Father Hunger - Fathers, Daughters, and the Pursuit of Thinness, 2nd edition.  Her book discusses how a father's physical or emotional absence can contribute to a daughter's susceptibility to an eating disorder.    Note that I didn't say "does" and I did say "susceptibility."  And, I want to add that I believe boys are just as susceptible given the "right" combination of factors.  After all, eating disorders affect men and boys as well as girls and women.  Before readers jump all over me, I do know that there are single-parent households that thrive just fine.  And I know the word family means much more than a two-parent male and female pairing, to include gay and lesbian parents.  And I am related to a family that includes the bio-dads even as the two women raise their three children.  Perhaps this hunger concept might be extended to the entire role of being a parent.  I haven't thought that much about this until just now.  Other readers may (probably will) argue that this is a biological disease and parenting has nothing to do with it.  I admit, I don't know.  I also know we do not exist in a bubble or to quote John Dunne, "no man is an island, entire of itself."

When my brother, sister, and I grew up we understood the maxim, spare the rod and spoil the child.  We heard "boys don't cry."  We needed to keep "stiff upper lips" and "soldier on."  After all, that was how my father and mother were raised and that was what they brought with them into parenthood.  Things are changing.  Too slowly in my book, and certainly not everywhere.  I would be quite short-sighted if I believed that.  But thanks in part to feminism and to strong women, our society has brought changes to family roles that once were clearly divided. 

I was reminded again of this while reading a section of the September 2010 edition of the Al-Anon publication,  The Forum.  The section is titled, "Step Nine: Making amends to my children made me a better father" and the author is Pat Q.  As he recounts, before he delved into who he really was, he "...played big daddy or drill sergeant with my children.  I forced them to do things my way."  He had four children and the first three were raised more along the lines of what he described.  The fourth, however, was raised differently because the dad came to realize that he didn't need to be big daddy or drill sergeant or the man to raise his children.  At the same time, he also realized that his older three children were unsure of how to take this change and, as well, were afraid that their little brother wouldn't grow up to be strong and tough as they had been brought up to be.  He was able to share that when he became a father he had no idea how to be a father other than the role he had witnessed and then came to mirror.  He learned how to be there for them and he learned better how to listen and to hear their point of view and help them navigate the world.

How well do we really know our children?  I remember when my daughter came along less than two years after my son, his father and I saw him as a little boy rather than still as the baby he was.  When they both entered their teen years with the related angst of becoming an adult, however that was conceived, they approached adulthood differently and dealt with it differently.  Genetic? biological? environmental? All of the above? who knows......  Again, their story. 

I remember my father was arranging his affairs about a year before he died; after years of judging me because, he later admitted, he wanted me to be more like a son (my brother had died when we were in our teens).  He was vastly disappointed in my decision to divorce and felt no sympathy when my second husband and I came to a parting of the ways.  I guess sympathy isn't the word actually; I was hoping for some support through the transition as important as it was that I take the step and move on.    In my father's mind, I was "typed", perhaps somewhat the same way we type actors who seem to gravitate to the same roles.

In fact, one of my most important growing experiences occurred when I, in my early forties and earning a very limited income at the time, came to my parents for financial help to repair our leaking roof and I was declined because I had "made my bed."  Being who I was growing into being, I took matters into my own hands, went off to the do-it-yourself store, learned what to do from one of the knowledgeable clerks, climbed up on the roof and repaired the darned thing myself (we had a flat roof, thank goodness).  What a lesson that was in independence.

This isn't whining.  It happened and I moved on.  I've learned that to dwell in this kind of experience and to get stuck in it, isn't healthy for me or anyone else.  A good thing came out of it; I figured out how to fix my roof and my handyman came by later when he had time and pronounced the job better than he would have been able to do!

But, I digress.  In the end, the attorney asked me to bring my resume as part of the paperwork submission and I did.  My father looked at it and was astonished at what he read.  He realized what the doing part of me had accomplished and not only that but what my focus meant to who I was.  He didn't know me.    It was a sad moment and at the same time a good moment.  It just took too long to happen.

Perhaps by sharing these thoughts, at least one reader will take the time to get to know their son or daughter better and, as well, learn the principles of LEAP.  Perhaps they will learn to relate in a different way.

[I edited this post after a couple of hours.  I wrote this one straight to the blog.  That's not a good idea!]