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Sibling Support – What’s Out There?

As a child growing up I never thought about the concept of needing “support”. I didn’t think about the fact that I didn’t know anyone who was experiencing a lot of the things that I was experiencing in my home. Maybe I did have friends who were also sibs to special needs kids, but if I did, I didn’t know it, because I was not aware that there was a need and so I didn’t talk about it. I was a kid trying to be a kid, plain and simple. I had no idea of the concepts of peer support, the need for validation, or a safe forum to ask questions that I had about my brother’s disability or what it meant for my family, for me, or our future.

It was when I got older, working in the fields of both mental health and developmental disabilities, that I felt a kinship with the siblings, admittedly more so than with the parents of the special needs’ kiddos, or even the person with the special need him or herself. It started to happen naturally, and frequently, that I felt good when I could tell it helped them when I said something that clicked – I would often get a look which I translated as “Oh wow, you understand?, “You get this??”, or “This is comforting”. And then they’d be on their way, or I would … out the door, and then I worried they’d be back in a void; a place where they could not speak openly or feel as heard. At that point I realized my life had been a bit different than my peers and that it sure would have been nice if someone had understood, and that things should change.

I then reached a point in my career where I felt fairly secure or grounded in how I would approach sibs and was lucky enough to make talking to them about these things a small piece of my work. But I also became obsessed with finding out what else was out there. What kinds of groups? Doesn’t anyone else realize this is a need? And I researched. What I found was both thrilling, and disappointing. There is very little available, which saddens me. It is still a field untouched and undiscovered, really. However, I also found The Sibling Support Project, and Don Meyer; someone who not only knew the need very well, but the man who took the extra leap and created the curriculum for Sibshops. Eventually, I took his workshop and now am a facilitator of these Sibshops in Colorado Springs, Colorado. There are many around the world. Below are a couple of links, with explanations of this issue, the need to address it, what Sibshops are, and how to find them. I highly encourage you to surf around, wherever you are. There may be a Sibshop near you, and if not, you may want to make it known to a local organization that you wish there was, and that you would want to partake in that service if it was available. Maybe you want to take the workshop and then facilitate them yourself! It is highly rewarding, FUN, challenging, and affirming.

http://www.siblingsupport.org/
There are so many places to go within this site. If you are a sibling of a special needs’ person, you could be here endlessly. Pay it a visit.

Some options:

You may click on “Sibshops”, then “Find One Near You”, and enter your country and state and see what pops up.

Or click on “Connect With Other Sibs” and find the various stories to read and maybe connect with, and there are also some very active online forums for sibs to join.

There are books under “Publications” (which can be life-changing; one in particular was, for me), or click on “Workshops” to see if a facilitator training is coming to your area.

www.rockymountainsibshops.com
A shameless plug at my own website, should you happen to be in the Pikes Peak region…. Even if you’re not, I invite you to click on “External Links” for some good Youtube videos and recommended publications which might serve you.

I have seen some change in the past year or two. I give most of that credit to Don and The Sibling Support Project, for raising awareness, and to the work of Sibshops’ facilitators in so many communities. It is a healthy start. There is so much need, and so much more room to grow. Please get involved. Chances are if you are reading this blog, you are involved at some level. I hope the importance of sibling support is ringing true with you and that you will seek it in your community and consider getting involved.

Lisa Croce, RN, BSN

www.rockymountainsibshops.com

 

“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

 

“What About Those Siblings?”

An often overlooked demographic, siblings of people affected by mental illness, are typically the longest living relatives, and potential caregivers or pillars of support for people with serious mental illness, as well as other disabilities. Despite this fact, and due to varying factors, this population is the least likely to receive support, education, assistance, or even a forum to openly discuss their concerns, worries, questions. Change is occurring, but all too slowly.

Many years ago, even parents were not provided adequate support for their children’s diagnoses. That has certainly evolved. There are many parents’ groups now and educational resources in print as well as online. It is immediately recognized these days that when a child is diagnosed with any type of disability, it involves the family, and providers march into action to address concerns with the parents. The siblings, however? Very seldom, even now in 2013, are the siblings’ needs thought of, mentioned, addressed. This is changing. Slowly. Very slowly.

As a person who was a sibling to a brother with a significant disability, I always knew something was missing in terms of support. I worried. I wondered. I worried and wondered silently. My parents did the best they knew how to do, and actually did it quite well. Most of their time was, of course, spent caring for my brother. Rightly so, and I wouldn’t have had it any other way. We sisters knew to not add to their distress by asking too many questions, adding to their tensions by letting them know of our concerns. There were times I was too embarrassed to have friends to my house after school because his behavior was odd. I did not understand. I felt tremendous guilt for feeling that way. I said nothing about any of it.  There was absolutely no one who I could talk to. Who would’ve understood? As I look back I realize there were probably friends at school who had siblings with a disability, and maybe I could have spoken with them, but how would I have known who those students were? It sure would have been nice to connect with them – with someone.

One of the reasons that siblings have not been well included in the conversations over the years is simply that parents were/are trying to protect the sibs. They often feel it is their burden and do not want to share that with the sibs. Parents are intrinsically assigned to protect their children, after all. The intention is truly good. Another factor is that they just do not know how much to say, exactly what to say and not say, and are often thrown off by various ages of the kids and who should be told what!

The good news: A huge percentage of siblings of people with special needs grow up to be amazingly empathetic people themselves, are less likely to bully or tolerate bullying, and often mature into contributing via their careers in the helping professions. It is good to remember that there are joys as well as concerns that result from being a sib.

I plan to write blogs pertaining to the following specific topics: current available supports, one on nothing but the joys, one about shared concerns regarding who is to help out after the parents die, typical traits and common concerns of the sibs, one on statistics, one for the parents on best ways to communicate with the sibs, and so forth. With opens ears and arms I welcome your suggestions. SIBLINGS – what do you want to talk about?

In closing this initial sib-focused blog, I just want to say that as a mental health nurse working with people dealing with all sorts of illness and disability for my entire career, the siblings and I have always resonated, and my brother’s biggest gift to me was the compassion, empathy, and connection that was instilled in me to share with you. You are not alone. I hope you find the solace and sense of understanding, even belonging, that is here for you.

Lisa Croce, RN, BSN

www.rockymountainsibshops.com

To 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.