What about siblings?

It’s no secret that parents of atypical kids have a lot on their plate. They have all the concerns every parent deals with, plus extra helpings regarding school, therapy, social interactions, negative emotions, the future…. It’s easy to understand how the other kids in the family may get shortchanged when it comes to parental attention.

Even so, the emotional needs of “typical” siblings deserve special care and attention. The siblings face the daily challenge of having a brother or sister whose behavior is delayed, volatile, embarrassing, attention-sucking, or maybe even dangerous. It is dispiriting to be routinely ignored at home while the focus is on someone else who is not all that likeable. Siblings are sometimes expected to take on extra chores, and to have exemplary behavior, so as not to add more burdens on their stressed-out parent(s).

In our family, for the most part we didn’t focus on sibling issues because we didn’t seem to have any. Nathan and Alan (two years apart in age) enjoyed playing with each other all through their younger years. In fact, they probably had way fewer fights than brothers in most “average” families.  Easygoing Alan had remarkable tolerance with his older brother’s quirks. We made sure Alan had one-on-one time with each of us, and that he was able to participate in sports when he wanted to.

When Nathan spiraled downward in the early teen years, the family dynamic changed. The brothers began to despise each other, and Alan’s behavior and outlook toward life also took a nosedive. Was it cause and effect, or would Alan have acted out anyway? Was the therapy we eventually sought for Alan too little, too late? (Do you ask yourself similar questions?)

Some siblings growing up in a special-needs family acquire positive traits like flexibility, cooperation, compassion, and problem-solving. These traits serve them well throughout life. In other instances, siblings may brew a more toxic mindframe of frustration, entitlement, and resentment, and end up acting out to get their share of attention. Of course, the emotions of siblings can also be a mix of positive and negative, and can change over time.

We all want siblings to get a fair shake and to develop those positive traits, right? We want that for any child, in any family.

However, that outcome is often more difficult to achieve in special-needs families. At least one study has shown that siblings of special needs kids are more likely to have troubles of their own. And this link, which I placed on the Facebook page for Climbing the Cinder Cone a few months ago, discusses a study that found a trend for poorer academic performance among special-needs siblings: http://www.edweek.org/ew/articles/2013/08/21/01sociology.h33.html?tkn=WSCCKWbIvq010fPdH6ryDB9gzsdlR%2BjGIUVK&cmp=clp-sb-ascd

The end of the article above notes that the sibling may be internalizing the burdens instead of acting out, so parents should be sure to allow for one-on-one time, where any concerns can be safely expressed. Counseling may also be a good idea, even if there are no blatant warning signs.

Here is a link from the University of Michigan that gives a helpful overview of the sibling situation, with links to other resources as well: http://www.med.umich.edu/yourchild/topics/specneed.htm

One organization that popped up several times in my Internet search is The Sibling Support Project. It is specifically for siblings who have a brother or sister with special needs. Over 400 “Sibshops” in the US, Canada, and elsewhere provide gatherings where “typical” siblings can have fun with other kids who are in the same boat, and also can have a chance to talk about things. I see there are currently 16 Sibshops in all of California. The Sibling Support Project offers guidance for establishing new Sibshops if you want to get one started in your area.

This link from the Sibling Support Project website lists 20 things that the rest of us should know.

The two main points I took away from the list this are:

  • that siblings are the people who are going to be involved in the life of the family member with special needs the longest (after the parents have passed away), and therefore need to be included, informed, and consulted as decisions are made. To a large extent, parents and agencies are not doing this.
  • that siblings deserve to live their own lives.

Point #6 in this link, “The Right to a Safe Environment”, struck a special chord with me. There were probably times that we left our teenage sons at home by themselves when shouldn’t have. We may never know if anything significant really happened – both boys have reasons to cover up or to embellish the truth – but it’s possible that Nathan, in one of his escalated moods, could have caused Alan physical or emotional harm, which in turn may have contributed to some of Alan’s ongoing emotional problems. It’s one of those parenting guilt things I carry around. But the “right to a safe environment” was also our motivation to find Nathan his own apartment soon after he graduated high school, so that at least in Alan’s last two years of living at home he would not be continually subjected to his older brother’s negative, distorted thinking.

Much of the information I found online about siblings skews towards supporting kids who are elementary-school age. That’s great, but sometimes the challenges of having a special-needs sibling don’t arise until the tween or teen years. This can be due to new stepfamily members, additions to the family through adoption or foster parenting, or due to mental illnesses that show up in the teen years of a child who had been “typical” until then.

The NAMI website has this helpful article for older siblings coping with a loved one with a mental illness. Again, a variety of emotions are acknowledged as being part of the package.

Your existing local support groups might touch on the needs of siblings at least once in a while. If the topic hasn’t come up in the meetings you’ve attended, suggest it to the facilitator. Chances are, other members of the group have the same concerns.

In addition to getting help from groups and therapists, siblings may benefit from reading books about others like themselves. One such book is Mad House: Growing Up in the Shadow of Mentally Ill Siblings, by Clea Simon. On this book’s Amazon page,  you’ll see other books with similar themes. I haven’t read any of these, but am glad they are available.

And look! There are scholarships available for students with a special-needs sibling. What a great idea. This link from eHow lists a few specific scholarships, but it may be worth researching to find more options.

Making sure that siblings have access to support, in groups or from therapists or trusted acquaintances, is recommended in almost all of the links I found.  And parents, we need to take the time to chat with, listen to, and hug our kids who may be enduring a very challenging home life, and who have very little power to make it better. These siblings deserve much better than being an afterthought.

UPDATE 11/18/13: Since publishing this post, I’ve heard from two authors of books related to this subject. Peggy Boone, PhD wrote a book titled “Shadow Boxing: Siblings of the Disabled”, available from Tate Publishing. It describes the results of her study of families having a disabled sibling. Michele Gianetti’s book is called “I Believe In You: A Mother and Daughter’s Special Journey”, also from Tate Publishing. The book tells the story of Michele’s family, in which her middle child has diagnoses of sensory processing disorder (SPD) and dyspraxia.  You might want to check these out!

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About janet565

I've lived in the Inland Empire of Southern California since 1982. Born and raised in New Jersey, I've also lived in upstate New York and in Oregon. My profession involves maps and geography, which is usually very interesting. My hobbies are pretty boring - none of them involve tigers (or ligers) or jumping out of aircraft - so they do not bear mention here. I hope you find the blog useful, and wish you well....

6 responses to “What about siblings?”

  1. bsabian says :

    I really like this post. You’ve done a great job of combining the heart and passion that stem from your own experiences with a scrupulous job of researching the issue and the relevant resources aimed at helping those in a similar situation. Great job!

    Like

    • janet565 says :

      Thanks very much for your comment! I really hope the info in the post will be helpful to other families, including the ones you serve at Academy MetroWest…

      Like

      • bsabian says :

        I think it will be. I posted it on our Facebook and Twitter pages today so hopefully it’ll get some views and some parents can get some perspective from it.

        Like

  2. janet565 says :

    Splendid! Thank you.

    Like

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