Insights and MIA

So, sorry I've been MIA for the last two weeks. I've been throwing myself a pity party that so many of my SB mama friends were enjoying the national conference while I dealt with stuff here at home... But you know, yesterday, I saw some WONDERFUL photos on facebook and some blogs that lifted my spirits. Pictures of you. Eating together. Laughing together. Fellowshiping. And having a great time.

I loved them. Even though I wasn't there, I felt a smile spread across my face at seeing you all have such a great time. And even more when I read about your encounters. I've already informed the husband that I WILL be going next year.

*smile*

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Oh, and did you get your "Insights into Spina Bifida" magazine today? Yeah, me neither. Actually, I've been going back and forth with the SBA for a while about my subscription as we haven't received ANY issues since we subscribed more than a year ago.

BUT... I did hear from Colleen on my facebook wall today that my kids are on the cover.

Which I'm totally excited about. Now, if I could just get my hands on a copy!!

(I have read the article written by Carole Barnhart, and I'm including the text below. You might recognize the piece by my son, it first appeared right here on SpinaBifidaKids!)


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In February 2005, Tim and Karin Henn of Columbus, Ohio, welcomed two new sons into their family. Isaiah was eight and Isaac was four. They came to the “Henn House” from the foster care system, with distant memories of a baby sister they hadn't seen since Isaac was 17 months old.

“Tim and I never intended to have birth children,” says Karin. “It was our desire to build a family through adoption of special needs sibling groups. But as soon as the boys arrived, they began praying for a new baby sister. By Mother's Day, I was shocked to discover that I was pregnant!” Esther-Faith was born nine months later with Spina Bifida, beginning what was to become remarkable relationships with her two brothers.

A Spectrum of Emotion
“The siblings of children with Spina Bifida often experience a wide range of deeply complex emotions,” observes Melissa Bellin, PhD, MSW, LCSW, Assistant Professor at the University of Maryland School of Social Work in Baltimore, Md. “It is typical for feelings to fluctuate from occasional jealousy or embarrassment, through protective watchfulness to profound compassion and love.”

“I have definitely seen the protectiveness in both my boys,” Karin notes. “Isaiah once drew himself up and stared down some kids who were making rude comments. Isaac, too, has stepped up in her defense.” Perhaps because of the difference in their ages, Karin has not seen evidence of jealousy or embarrassment. The boys do become frustrated with Esther-Faith's medical needs—as much from concern for her as for themselves. The nighttime routine gets tedious at times, but Karin and Tim make sure they spend one-on-one time with each son, hoping to avoid their feeling overlooked or unimportant.

“Especially when there are medical crises or hospitalizations, siblings of children with Spina Bifida are at risk of feeling undervalued,” says Dr. Bellin. “For that reason, I recommend that parents encourage positive attachments with caring adults outside the immediate family so there is a safety net to support the siblings' needs during especially stressful periods.” For Isaac, daily contact with his grandparents have woven the safety net that has allowed him to stay on an even keel during Esther-Faith's hospitalizations. Not so for Isaiah.

A Healing Connection
Because of the boys' early life experiences, Isaiah and Isaac both have what is known as 'reactive attachment disorder. “It is difficult for them to form trusting attachments,” Karin explains. “It is so severe with Isaiah, that Tim and I had prepared ourselves to never have deep attachment with him.”

Enter Esther-Faith. Karin describes her and Isaac as “the best of friends.” Often, Karin will find the two of them curled up together, Isaac reading to Esther-Faith, or teaching her to read. For Isaiah, his relationship with Esther-Faith is perhaps the only positive attachment he experiences. “The connection I see between Isaiah and Esther-Faith has given Tim and me hope that some day we may eventually connect with him too,” says Karin.

“We thought that because of Isaac's connection with her, he would become undone when Esther-Faith was in the hospital for three weeks last year,” remembers Karin. “We were surprised to see the opposite happen.” When he sensed the stress level rising, Isaac stepped up to the occasion, doing extra chores without being asked. His grades even improved in school. “He seemed to understand the influence that his actions had on the rest of the family,” Karin says.

Isaiah responded in the opposite way. As the hospitalization dragged on, he got into increasingly more trouble at home and at school. “We tried to give him as much time with his sister as possible,” Karin recalls, “but it seemed that he really couldn't handle having her gone. It truly illustrated for us how critical that one connection is for Isaiah.”

Hidden Rewards
Dr. Bellin's research has discovered that as siblings of children with Spina Bifida grow older, most come to accept and appreciate the unanticipated rewards that come with their situation. “Many of them grow toward an appreciation for their own health, and an increased respect for diversity,” she notes.

Karin knows that her boys are aware of how difficult life can be for Esther-Faith, but she has not seen them translate that awareness to themselves. “Isaiah has expressed his sadness at the medical procedures and the limitations Esther-Faith has to endure,” she explains. “But I haven't seen him apply that experience to himself. When he runs a charity race, he says he is running for Esther-Faith. Isaac doesn't seem to see Esther-Faith through the lens of her disability at all. When they play together, he just makes it work for her.”

Respect for diversity is a given for members of a trans-racial family such as the Henns'. “Difference is the only thing they know,” observes Karin. Even with their own personal struggles, Karin believes that none of her children would claim to have “special needs.” “We've been through difficult times with the boys,” she says. “But we've learned to separate their behavior from their person. When they get into trouble, we remind them that it isn't their fault, it is their problem. And problems have solutions we can work out together.”

If Dr. Bellin were to communicate one message to the families and health care providers of children with Spina Bifida, it would be the need to remember that the impact of a disability reverberates throughout the family. The Henn family is testament that those reverberations are often as positive as they are negative.


[pullout]
Dr. Bellin remarked on the complexity of emotion experienced by the siblings of children with Spina Bifida. When Isaiah was 13, he captured those conflicting emotions in a family blog.

Hello! My name is Isaiah. I am 13 years old. I was nine years old when I found out that my brand new baby sister had Spina Bifida. I was nine years old when my life changed forever, and it has made me the brother to a sister who I never knew would have to go through so much just to take a step.


When I found out that my sister, Esther-Faith, had Spina Bifida, I did not know what to do. All I knew is that I had a sister. But when I walked into that room, I heard the news, and I realized just then that I would have to work harder.


I was trying to be helpful by staying out of the way. I didn't want to get in the way of the doctors or the chaos. We already had enough of that! I tried to do little chores for my parents as well.


Spina Bifida wasn't exactly anything I wanted for my little sister. I hate to see her watch other kids do things that she can't do. It hurts me so much and I can't do anything about it. I was startled to hear that my sister had Spina Bifida. It spooked me out. But when I met that little, tiny baby, I realized it didn't matter if she had Spina Bifida or not, she is my sister. Now, I feel the same thing. Four years and six months later, she is still my little sister.


I honestly did not do any research on Spina Bifida. I did not really know how to use a computer and it did not come to my mind. I was too busy rushing around staying out of the way. But thinking about it now, I probably should have.


It is really hard to see my sister go through surgeries and to have to watch it happen. It breaks my heart. This January, when my sister was in the hospital, I didn't know what to do with myself. Should I feel sad? Surprised? Worried? Scared? All of these? I didn't know. But now I know. Even when she has surgeries or hospitalizations, or has Spina Bifida, I can believe one thing... actually two things. These two things I hold on to. Wherever I am, I take them with me.


The first is that I love my sister.


The second is that I won't ever let her go.

Spina Bifida University

(From a publication of the SBA)

"Launching in October 2010, SBU will offer both pre-recorded and live seminars with medical and health care professionals from around the country--all on the topics that are important to you and all at NO COST!"

TODAY!
October 11: Urology

• Management of the Neurogenic Bladder: Late Childhood to Adulthood
• Evolution and Management of the Neurogenic Bowel in Spina Bifida

October 18: Aging with Spina Bifida

• Aging and Adulthood
• Managing Changes in Later Adulthood

October 25: General Health and Preventative Medicine

• Proper seating and wheelchair fitting for persons with Spina Bifida
• Latex Allergy: 2010 Update
• SOS: Save Our Skin!
• Motion Analysis for Patient Evaluation and Decision Making

Live sessions will begin in November 2010.

Visit spinabifidaassociation.org and click the SBU box on the home page for more information.

EDITED TO ADD:
(The following information is from an email received Monday, October 11, 2010, 9 a.m.)

Did you hear about SB University (SBU)? SBA’s new online educational platform launched last week. SBU offers both live and archived seminars on topics related to Spina Bifida. These can vary from health related seminars with medical professionals to employment or education tips from subject matter experts. The goal is to increase education about topics related to Spina Bifida that are important to our Community.
Sessions are FREE to registered users. Log onto to www.sbuniversity.org to register and become a part of a new online learning experience.

NEW this Week – Sessions on Urologic and Bowel Function:

Medical Management of the Neurogenic Bladder: Late Childhood to Adult
Presenters: Rosalia Misseri, MD and Hadley Wood, MD
This session discusses transitional urology, a sub-specialty of urology which focuses on congenital anomalies, and the impact of changes in the bladder on a person (both urological and sexual). Based on issues instead of age, the presenter explains how and when to transition care. The goal of transitional urology is to preserve kidney function while encouraging one to take responsibility for one’s own care as he/she moves into adulthood. The presenter also explains how to use social support systems to navigate the sub-specialties of health care and find the right doctors, the issues to be dealt with during the initial visit, and long-term concerns.

Evaluation and Management of the Neurogenic Bowel in Spina Bifida
Presenter: Kimberly Jarczyk, MSN, APNP
This session aims to illustrate how fecal incontinence can negatively impact health and the quality of life for people with Spina Bifida. During this session, the mechanisms of bowel incontinence and treatment options are described as well as the clinical concerns of poor bowel management. The anatomy of a normal and a neurogenic bowel is explained particularly as it relates to dysfunction as it pertains to lesions above and below T12. The link between constipation, the major problem in bowel incontinence, and bladder function, shunt malfunction, school and social problems, family discord, and financial burdens are also explored.

Spina Bifida University (SBU)

(From a publication of the SBA)

"Launching in October 2010, SBU will offer both pre-recorded and live seminars with medical and health care professionals from around the country--all on the topics that are important to you and all at NO COST!"

October 4: Education and Employment

• Building independence: How to develop better attention and intuition.
• Ten Tips for Success
• STRIVE for Success
• Nonverbal Learning Disability and Educational Implications
• Educational and Vocational Guidance for Individuals with Spina Bifida

October 11: Urology

• Management of the Neurogenic Bladder: Late Childhood to Adulthood
• Evolution and Management of the Neurogenic Bowel in Spina Bifida

October 18: Aging with Spina Bifida

• Aging and Adulthood
• Managing Changes in Later Adulthood

October 25: General Health and Preventative Medicine

• Proper seating and wheelchair fitting for persons with Spina Bifida
• Latex Allergy: 2010 Update
• SOS: Save Our Skin!
• Motion Analysis for Patient Evaluation and Decision Making

Live sessions will begin in November 2010.

Visit spinabifidaassociation.org and click the SBU box on the home page for more information.

"Illuminations"

From spinabifidaassociation.org:

Illuminations Program The Illuminations: Resources for Parenting a Child with Spina Bifida Program (Illuminations) is now available. It provides parents and caregivers of persons living with Spina Bifida tools and resources at critical points in development and transition. These educational and informational resources begin at birth and continue through the life cycle. If you are interested in finding out more information about these resources, please complete the form below and someone from SBA’s national office will contact you. MORE

Families and the SBAA Conference

Kari requested that we ask a family member about his/her experience with our child's Spina Bifida. My 13-year-old son really wants to share how he felt about learning about his sister, how he feels during her hospitalizations, and especially how he feels spending his summer vacation at a conference dedicated to her Spina Bifida.

However, as with most 13-year-old boys, he's kind of busy. I know he has started composing something, but if I know my son, he's going to make it as perfect as possible before he gives it to me. I'll post his thoughts as soon as he makes them available....

In the meantime, I've spent the last couple of days at the national conference. It has been amazing. I've learned a lot. And I've got LOTS of questions for Esther-Faith's doctors. Here are some of the things I've learned so far...

1. Every child is different. Every family is different. What works for one family may or may not work for another family. But we all have a combined experience: we have a child (or children) or a family member or a friend whose life has been touched by Spina Bifida.
2. See the list down the side? That list represents families and children. Real families. Unique children. Meeting some of those moms and dads and kids was the absolute highlight of my conference experience. Putting actual faces with names. Seeing them smile. Or nod. Or understand in a way that only they can understand. Carson’s mom and dad. Greyson’s mom and dad. Mattie's mom. Special people. The. Very. Best.
3. Because each family is unique and each child is unique, there is not a “one size fits all” treatment for anyone. Not for the bowel. Not for the bladder. Not for hydrocephalus or shunts or IEPs or orthotics or any of it. What’s true for one L4/L5 child may be different for an L5/S2 child. Or it might be very similar. And an L2/L3 might present like an S1 child. Every child is different, but we can all benefit from sharing our stories and experiences with each other.
4. You, the parents, are the ONLY true experts about your child. YOU know if your son or daughter has an attention deficit or if they are curious about everything. You know if your child is going to (or has) respond(ed) to a balloon cleansing enema or if you can buy over-the-counter pedialax and it will work fine. You know if your child has multiple recurring UTIs or if it is the same one over and over again. YOU know if your child will benefit from a play group or from a formal preschool program. YOU are the expert. YOU know if there are changes. YOU spend the most time with your child. YOU know what your family values and what you’re willing to sacrifice for your family as a team. Trust your gut.
5. Spina Bifida can be an overwhelming disability at times, but there is a HUGE network of families and blogs and web sites and friends who are already walking the same road. Some families are farther down the road. Some children are grown and can provide a retrospective view of growing up with Spina Bifida. Some are coming behind you and can benefit from knowing what you’ve already learned. But, there is a lot to know. A lot to learn. A lot to remember. No one has all the answers. Not even the doctors. It’s important to share our stories and respect that even though our children have similar diagnoses, we all have something to bring to the table.

Are/were you at the conference? What did you learn? Who did you meet? Did you find anything overwhelming? Reassuring? Surprising?

Kari has created this great forum for us to share our stories and lessons. Whether you're a family member, a person living with Spina Bifida, or a parent at any stage of the journey, you can email her at kari.leann@hotmail.com if you’ve got something to share.

4b4the4th

(Note: the following is from the Spina Bifida Association web site... Click here to go to the SBAA page (will open a new window).)

A campaign to raise awareness and much needed funding for Spina Bifida research, care, education and prevention.

In addition, you could win cash prizes totaling up to $1,000 by becoming a Team Captain

Want to Get Involved?

If you are on Facebook, MySpace, or Twitter, sign up to become friends with SBA. (Facebook and MySpace search word: Spina Bifida Association) (Twitter search word: spinabifidaassn). By supporting4b4the4th, you will recieve updates about Spina Bifida, and SBA's various programs. Make your donation of $4, $14, $40, $400, or more before the 4th of July (Get it? Four before the 4th!). Then ask 4, 14, 40 or 400 friends to do the same.

What Will Your $4 Provide?

• If you get 4 people to each donate $4, you will provide enough folic acid for one year to reduce the risk of one woman having a child born with Spina Bifida.
  
• If you get 14 people to each donate $4, at least 14 people affected by Spina Bifida will receive vital information and referrals through SBA’s National Resource Center.
  
• If you get 40 people to each donate $4, a child with Spina Bifida can spend one day at KIDS!Camp…a magical place that allows kids with Spina Bifida to just be kids.
  
• If you get 400 people to each donate $4, we can continue vital research for the 166,000 Americans living with Spina Bifida.

Not on a Social Networking Site?

You can still participate in 4b4the4th – write an email to send to your address book letting friends and family know about the campaign and the reasons you support SBA.

As the summer temperatures rise, so will 4b4the4th weekly tracking thermometer so make sure you watch it climb at www.spinabifidaassociation.org/4b4the4th.

Don’t forget to encourage everyone to send a notice to 4 friends and ask them to send it to 4, 14, 40 or 400 friends. Contribute $4, $14, $40, $400 or more by the 4th of July.

This campaign is not only viral... it’s VITAL

Leading the Way to the Future

(NOTE: Clicking on a link in this post will open a new window and will not take you away from the spinabifidakids.blogspot.com page.)

The Spina Bifida Association of America (www.sbaa.org) is preparing for the 37th annual conference. This year, the conference will be held in Cincinnati, Ohio from June 27 through June 30. From the SBA web site:

Please join the Spina Bifida Association (SBA) for the 37th National Conference to be held at the Hyatt Regency Cincinnati (Cincinnati, Ohio) from June 27 - June 30, 2010. Children and adults with Spina Bifida, their families, physicians, nurses, and other clinicians have the unique opportunity to gain information on the latest medical care and network on various issues which affect their lives and professions.

• Learn up-to-the-minute information about urology, orthopedics, neurology, neurosurgery treatment, and much more!
• Attend practical workshops and special programming that address your own interest areas. (schedule at a glance)
• Network with various interest groups - from others living with Spina Bifida to health professionals and product manufacturers.
• Find out how researchers are paving the way for more knowledge about Spina Bifida.
• Hear from leading Spina Bifida partners about the important role advocacy plays in our Community's success.

Register today and find out why the SBA National Conference has earned its place as the world's premier educational event for the Spina Bifida Community.


Many local Spina Bifida organizations offer scholarships to families so that they can attend the conference. If you are close and attending is a possibility, it would be great to see you there. I'm hoping to spread the word about SpinaBifidaKids.blogspot.com at the conference.