“What We Siblings Have in Common, Besides our Sibs”

We brothers and sisters of people with special needs, whether we are young, old, or somewhere in between, have much in common. Of course we are all individuals and as unique as everyone else on the planet, but there are some general traits and aptitudes that we tend to share. I would sure love to hear back from some of you after reading this blog to learn what you find to be true, how your experiences are different, and what your thoughts are as you read. Are you surprised? Are you validated? Do you get a feeling of “Oh, it’s not just me?”, or are you thinking “Hmmm, I am a sib and this doesn’t describe me at all”. Maybe you see another one of your sibs in some of the phrases. Please feel free to share.

There are three very typical behaviors taken on by children who grow up with a special needs’ sibling. We’ll call them “The Overachiever”, “The Invisible One” and the “Pick Me! Pick Me!”.

The Overachiever: Some sibs (it often happens to be the eldest, though not always) seem to try to overcompensate for the special needs’ siblings by working extra hard in school, being overly helpful in the house, behaving exceptionally well. They see that it is sometimes difficult for their parents to care for their sib, and so they do their part to make things easier. This sounds wonderful, and in many ways is, but hopefully these kids are having fun too, and not growing up too fast. One upshot of being The Overachiever is the good grades which may afford them scholarships and invitations to good colleges and universities.  Another is possibly a lower risk lifestyle and safer adolescence with less chance of experimental drug or alcohol use, or young onset of sexual activity.  The bad news is the self-induced pressure and high standards which might be difficult to maintain, and depressing when they can’t be lived up to. This is still a child we are talking about, after all.

The “Invisible One”: For the same reasons as The Overachiever, The Invisible One just figures if they fly below the radar it will make their parents’ lives easier.  They may, unfortunately, be feeling an absence of attention from their parents since much of their focus is on the special needs’ sib, and so they feel a bit invisible, and then simply behave in a way that lives up to that persona. They’re not getting into lots of trouble, or failing in school, yet they’re not stand-outs either! They simply go along, hardly recognized, and are sometimes referred to as  “easy” children. The good news, again, is possibly lower risk behavior, getting into very little trouble at home and in school. The bad news is maybe these children are not living up to their fullest potentials, or as happy and fulfilled as they could be. Maybe they want more out of life, or from their parents, but do not seek it because this would certainly make them visible.

The “Pick Me! Pick me!”: Oh boy, this can be a fun child. Often described as precocious, incorrigible, one who stands out from the rest of the family, or simply –   trouble, this child wants to be noticed and plain refuses to be ignored! They may at times realize their parents’ attention is being directed to where it needs to be, and simultaneously feel badly or guilty for interrupting that, however, they also feel a compulsion to be noticed; to want to be “picked”. The good news is that they are strong-willed, which is a quality helpful in later life in terms of assertiveness and getting their needs met. It may, in fact, gain them the attention from their parents that they need. It gets them noticed alright! The downside is that they sometimes don’t mind if it entails breaking the law, doing badly in school, acting out at home. They simply WILL be noticed.

Of course all kids, regardless of whether or not they have a sibling who has special needs, may fit into one of those three types, or another type. In addition, so many other factors in a person’s life affect their coping styles, including whether or not they are from a two-parent household, examples set for them, birth order, etc. The point is there are surely some general commonalities, and I point them out because it can be enlightening for a sib to know this, and to determine or gain some insight as to why they behave the way they do or became the way they are. I was a “Pick Me” kid and I did not end up in jail. I did, however, give my parents a run for their money. I think, and sure hope, that now they would be proud of the way I’ve turned out. I mention this to point out that it is not always a negative thing. Kids learn to cope in various ways. It just is what it is.

Special needs’ sibs learn and experience their family life in ways that most kids don’t. Empathy is often a lovely outcome. Most sibs are not only compassionate, but are also quite open-minded and tolerant of people who aren’t “typical” in myriad of ways. They don’t tolerate bullying. A high percentage of sibs grow up to find themselves in the helping professions (nurses, teachers, therapists, physicians, etc). I think sibs are special and make the world a better place. It is my hope that you will communicate with each other, meet each other, find support and understanding in each other, thereby creating a better understanding within yourself, and feel less alone in the world. In my next blog I will discuss the current available supports to encourage this. Please stay tuned and consider reaching out.

Lisa Croce, RN, BSN

www.rockymountainsibshops.com

 

Sticks, stones and stigma

“Sticks and stones may break my bones but words will never hurt me. This poem is wrong. I have never broken a bone in my life, but words have cut, trampled, and drilled through my heart. All the pain inflicted on one person can tear them apart. I should know. I have been in pieces since preschool.”

This was written by my grand daughter when she was eleven and writing about how it is to be living with a brain disorder and ostracized as being weird by her peers. Fortunately, she is doing very well now at fourteen, has lots of friends and is a star goal keeper for her high school soccer team. Still, it was a long haul and I have kept this piece she wrote to help remind me how important it is to work continuously to fight name calling and the stigma of mental illness. As a retired mental health professional, I have found the National Alliance on Mental Illness to be a great way for me to continue being an advocate on our Colorado Public Policy Committee. We need all the help we can get so please consider becoming active in NAMI.

NAMI Colorado is dedicated to building better lives for the 250,000 plus Coloradoans and their families who are affected by any number of mental illnesses – schizophrenia, bipolar disorder, depression, PTSD, obsessive-compulsive disorder, borderline personality disorder, panic disorder and others.
We do this by providing:

— free educational classes about mental illness to the community;
— providing support groups for those with mental illness and their families;
— through political advocacy for all concerned;
— and through our volunteer support and donations.
NAMI’s national website is www.nami.org

NAMI Colorado’s website is www.namicolorado.org

Phoebe Norton

 

People recover from schizophrenia

You won’t hear psychiatrists say this often (and I am a psychiatrist): People recover from schizophrenia.

Something that has long been accepted as a truism by psychiatrists around the world is a belief, promulgated by Emil Kraepelin, the director of a German asylum in the late 1800s, that schizophrenia has an inevitable downhill course. Kraepelin called the illness “dementia praecox” (progressive illness of early life) to hammer home this idea. The concept is reinforced for psychiatrists by the fact that they rarely see people who have recovered from the illness; the recovered patient just stops coming in to see them and returns to a normal life.

Some events transform our professional lives. The first in my career was a conference in Palo Alto in 1977. I was a raw, young psychiatrist when Loren Mosher and his colleagues presented the results of the Soteria study. At that meeting I learned a truth from which my training had protected me – that people can recover from schizophrenia without medication.

Soteria was a therapeutic milieu for young people who met criteria for schizophrenia that was designed as a gentler alternative to the psychiatric hospital. The program, established in a house on a street in San José, California, offered a calming, respectful environment that tolerated individual differences. Staff were encouraged to treat residents as peers and to share household chores, creating an ethos of shared responsibility for running the house and being part of a mutually-supportive community. AnTo post a response to this blog please visit The Recovery Trust.

The Recovery Trust, a Colorado-based nonprofit, has added a new resource for families in need of education and support. It is a free, secure, online forum through which family members can join with others in the same situation.

The forum is moderated by a team of mental health professionals, psychiatrists, family members and people who have experienced mental illness, all of whom have received extensive training in their role as facilitators. Users of the forum can access a large database of information about these illnesses, FAQs and links to other resources.tipsychotic medication was rarely used.

The Soteria project demonstrated that long-term outcome for residents of the therapeutic household was similar to that of patients admitted to standard hospital-based treatment where antipsychotic medication was routinely used. The Soteria approach has since been replicated in California, Alaska, and several countries in Europe.

Coming away from the Soteria conference, I was infused with a passion to understand the true course and outcome from schizophrenia. For months, I ferretted around in the dusty basements of medical libraries unearthing twentieth-century research studies from all over the world. Outcome from schizophrenia has been a popular topic for psychiatrists to study, in the US, Britain, Scandinavia and beyond, since the late 1800s when it was first defined as an illness by Kraepelin. I brought this analysis of over a hundred studies in schizophrenia up-to-date in 2004, incorporating results from the entire century. It demonstrated that optimism about outcome from schizophrenia is justified. Throughout the century around 20% regularly achieved “social recovery” (economic and residential independence and minimal social disruption) and another 20% achieved “complete recovery” (loss of psychotic symptoms and return to the pre-illness level of functioning). This was true for the whole century, except the Great Depression, when recovery rates were halved. Long-term outcome did not improve at all – in fact it got worse – after the introduction of antipsychotic medication in the mid-1950s.

These results aren’t just ancient history. Support for this level of recovery comes from a number of recent studies. A 2007 Chicago-based 15-year follow-up of people with schizophrenia found 19% to be in complete recovery. A 2008 study from Hamburg, Germany, found that 17% of nearly 400 patients with schizophrenia achieved complete recovery after a 3-year follow-up period, and an 8-year study of people with schizophrenia in Dublin, published in 2009, found 39% to be socially recovered. All these results are closely in line with the results of the twentieth-century studies.

It emerges that one of the most robust findings about schizophrenia is that a substantial proportion of those who present with the illness in high-income countries will recover completely or with good functional capacity. Surprisingly, outcome is even better in low- and middle-income countries. Kraepelin’s view that a deteriorating course is a hallmark of the illness proves not to be true; heterogeneity of outcome, both in terms of symptoms and functioning, is the signature feature.

Knowing what I know now, when I see a patient with a first episode of psychosis I don’t start antipsychotic medications right away, especially if the onset is very acute. I wait a few days to see what transpires. If I eventually decide that the person does suffer from schizophrenia, the first thing I tell the family is: This is an illness that generally gets milder as time passes.

Let’s put Emil Kraepelin behind us. We know what we need to know to be able to stop telling patients and families that the outlook from schizophrenia is dismal.

Dick Warner