Special Families, Special Sibs.
Part I of a Four-Part Series on Special Needs Siblings
In honor of April Autism Awareness Month and Sibling Appreciation Day on April 10 (yes, there is such a day!) our Special Adventure parent support group had the extraordinary blessing of hosting a Special Needs Sibling Panel on April 21, 2013.
We invited four adult siblings who grew up with a special needs brother or sister to share their experiences, as well as practical advice for parents raising both typically developing and SN children. Facilitating the Panel, was Debbie Lillo, Joni and Friends Church Relations Manager for the JAF San Francisco Bay Area office (who also happens to be my mentor and a dear friend.)
“Sibs” Have Unique Needs, Too
I came to a deeper appreciation how “Sibs” also experience grief and loss of expectations for a “normal” childhood and family life, just as parents do. But Sib grief manifests from a different angle.
Parents’ lives are impacted suddenly by receiving a life-changing diagnosis for their child. Induction into the world of Special Needs comes as emotional blunt-force trauma. But as harsh as the news may be, parents are still introduced to the world of disability as adults. They have adult faculties and resources to navigate the new reality that life will now be irrevocably different.
Sibs, however, are usually inducted into the world of special needs as young children, when their sibling is born or diagnosed during childhood. For most Sibs, they’re not aware of their family being different. It’s the only world they’ve ever known. What they know is normal for them. Sibs grow up gradually becoming aware that their special needs brother or sister –and their families– are much different from everyone else’s.
Given this different “on ramp,” Sibs may experience the onset of grief as a subtle, more gradual progression. As children, they adapt. But they may not have the internal tools developed yet, to process the unique challenges of being a special needs family. Nevertheless, just like special needs parents benefit from added support, so do special needs Sibs.
Knowing Is Half The Battle
Special needs families are often overwhelmed trying to deal with the extraordinary demands of daily life in caring for a loved one with a disability. We rarely have the luxury to pause, to address how profoundly disability may have affected us emotionally, relationally and spiritually. We underestimate just how much having a disabled family member has effectively short-circuited, scrambled and reformatted our emotional DNA and expectations for a “normal” family experience.
Some may compartmentalize; shove aside or bury the issue; others may distract, delay or deny thinking about it by semi-intentionally hiding behind busyness. Precious few actually face the hurt, anger or confusion they may have carried, subconsciously, for years, particularly if we come from religious backgrounds or specific cultures (e.g. guilt and shame.) Few address their grief squarely, which can usher in healing and acceptance. The net result is that we might be functionally operational (is there any other choice?) But we do so as walking wounded.
Acknowledgement is the beginning of healing. And to share that knowledge can be empowering. Here are a few highlights of the powerful insights our Sib Panel shared. With utter vulnerability and candor, they went there. They honored us by opening up and entrusting us with the deepest, most precious parts of their hearts. And they brought it. They really, really brought it…
Introducing Our Super Sib Panel
Our panel included four adults who each grew up with a special needs sibling:
- Traci, a San José State college senior majoring in Film
- Gabe, the teaching pastor at Saratoga Federated Church
- Heidy, the principal of Ceiba College Prep middle school
- Cat, a graphic designer and volunteer “Buddy” with our church’s special needs ministry
They represented families affected by various disabilities (e.g. Down Syndrome, congenital brain defect, Autism Spectrum Disorders, and other, “unlabeled” medical conditions), as well as various birth order, cultural backgrounds, and different levels of parental support. Each panelist was also at different stages in processing their own experience as an adult SN “Sib.” For some, it was the first time openly sharing about their sibling in a public setting. For others, it was not their first time, but each time yielded different understanding and deeper insights gained.
What Was Hard As a Sib?
Our panelists shared struggles universal to special needs Sibs: growing up with feelings of shame, guilt, worry about the future, neglect, envy and resentment; yet fierce love, over-protectiveness and extreme responsibility for their special needs sibling (and for their parents/family.)
- Confusion and uncertainty over a sibling’s condition and abilities, yet not feeling free to ask questions for fear of causing distress to parents.
- Embarrassment over a sibling’s atypical behaviors and frequent meltdowns.
- A Sib who had broken her arm, but hid it from her parents because she knew the family was experiencing financial stress due to the disabled sibling’s medical expenses.
- Anger at finding out a younger sibling had been “given up on” by Kindergarten teachers, and relegated to low expectations. Taking it upon herself as a 3rd grader to tutor him at home.
- Feeling pressured to perform, take on additional responsibilities and be the model child, to compensate for a disabled sibling.
- Feeling guilty and torn between wanting to help the sibling/family, and pursuing own interests and activities, or even moving away for college.
- Tearful memories of driving home after leaving a disabled sister behind at a group home.
What’s So Funny?!
In the midst of tears in recollecting these experiences, those same stories also yielded cathartic tears of laughter, years later, especially given the present company. Every special needs parent could relate to horrific episodes that are anything but funny at the time, but become hysterical later. Only this crowd could appreciate such bittersweet stories, and laugh together:
- A toilet paper obsession that was shrewdly parlayed into a toilet paper restocking chore
- A sibling’s uproarious habit of dropping his towel in the family living room after showering, and proudly declaring, “I naked!”
- Having to confiscate and cancel an adult sibling’s collection of credit cards.
- Scrambling for cover after a meltdown in front of the Sib’s high school vending machine.
How Has Your Sibling Shaped or Blessed You?
Interestingly, many of the very same stories of hardship (and laughter), the Sibs solidly attributed as being the vehicle for many life lessons and invaluable skills:
- “I Naked!” Gabe has been humbled and inspired by his sibling’s complete freedom from people-pleasing or shame. As the newly installed, young teaching pastor at an established local church, this Sib is still being blessed by his brother, who has always lavished him with unconditional love and acceptance.
- Resilience and flexibility. Out of the box thinking, problem-solving. Years of dealing with her sibling melting down in front of her high school friends, “How am I gonna get my sister off the floor and back into the car?!” has served Traci well as a college student, particularly as a film major when things don’t go according to plan on a shoot. Traci is currently producing a faith-based documentary on special needs siblings.
- Learning early on that the world is a broken and unfair place provided a realistic and sober view of the world. It also birthed a conviction to help those marginalized, lacking support or resources. Years of tutoring her younger sibling evolved into attendance at Harvard to become an educational advocate. Heidy’s passion has been working with at-risk students and building schools in underserved communities.
- Greater compassion, a heart for social justice, and eyes to “see what other people don’t see.” Cat volunteers as one of our most enthusiastic Special Adventure Buddies. She’s also an advocate for anti-human trafficking initiatives. As a newlywed, she and her husband opted to save up for a mission trip to India, in lieu of a honeymoon.
- The Hope of Glory made real,
“I can’t wait for Heaven, when I’ll get to see my brother in Resurrected Body. Just like for some of you (parents), it may be the first time you’ll finally hear your child speak…”
“You’re Doing The Best You Can”
Our Panel also had precious words of encouragement and affirmation for parents, expressing their utmost respect and admiration,
“I don’t know how they did it all. They weren’t perfect, by any means. But they did it really, really well…”
“I once asked my mom what her career aspirations had been, before my brother. She said she knew her role was to be 100% dedicated to caring for him. Knowing she was completely committed and okay with that, reassured me a lot…”
“I am very proud to be the brother of an adult special needs man…”
One Sib courageously opened up about her parents’ heartbreaking decision to place her sister in a group home at the age of fourteen. As a seven-year old who adored her older sister, she couldn’t understand and was devastated. Driving back home after dropping off her sister, was the first time she’d ever seen her father weep.
However, Sib was able to affirm that it turned out to be the best decision for her sister. Living in the group home provided her the opportunity to flourish, “to grow her own legs” and come into her own. The group home is located in a small town and has a wonderful program to engage their residents in meaningful employment throughout the community. Along with the rest of the group home, her sister became a local celebrity, and the entire town is blessed with a lovely atmosphere of inclusion.
Years later, the Sib herself would be faced with a heartbreaking decision. After much prayer, she concluded not to include her sister in her wedding — a day she’d fantasized about since childhood of having her sister at her side as a bridesmaid. She was concerned her sibling would be overwhelmed by the sensory overload of a large wedding involving multiple cross-cultural ceremonies, and spanning across several days.
After praying and agonizing over the decision, Sib decided to have an additional –much simpler– wedding ceremony at her sister’s group home. There, her sister would stand as her bridesmaid, and enjoy a custom-tailored reception just for her. It was the most loving way to honor her beloved sister.
“God Is Bigger”
This Sib came to a deeper understanding and appreciation for just how difficult the decision must have been for her parents, years ago, to place her sister in a group home. It enabled her to conclude that special needs parents are doing the best they can, given the knowledge or education they have at the time (e.g. historical context, cultural factors, available resources, etc.) She encouraged parents to allow ourselves grace. And ultimately, to trust that God will take care of our children.
While each Sib responds uniquely, our Panelists understood the deepest heartache of special needs parents. They also expressed an implicit understanding and acceptance of their role as caretakers after their parents were gone,
“Please trust us. We will take care of them. But most of all, God is bigger. He will take of them. He will take care of all of us.”
What an indescribable comfort and reassurance! It’s not all on us parents. It’s not even all on the Sibs. It is all on God. He is faithful to take care of ALL His Children, including us.
A Mother’s Answered Prayer
We closed with an extraordinary letter written by the mother of one of our Panelists, Mrs. Darby Gilliam. With her permission, below is an excerpt:
To Our Son, Gabe, brother to Michael, Joshua and Jordan,
I have often prayed and claimed out of Isaiah 54, that “all my sons would be taught of the Lord and the well-being of my sons would be great.”
Gabe, you are now an Under Shepherd to a flock. I know that God has used Jordan some in the growth process. He has given you the opportunity for a shepherding experience by participating in guiding and protecting a younger brother with special needs.
He has shown you the Joy of unconditional love from your brother so that you can pass that along to the flock. God has demonstrated to you in your relationship with Jordan that you do not have to perform a certain way for Jordan to love you or for God to love you. You can just be you and you are loved. That is so important for the flock of God to understand and you can pass along the truth of that to them since you have experienced it firsthand.
God gave you the opportunity to minister to Jordan as you helped us with his care through the years. Since you were the next oldest to him but you were also 8 years apart, you were at home with him longer than your two older brothers were. The scripture in Matthew, which says “Inasmuch as you have done it to the least of these my brethren, you have done it unto me,” shows that you ministered to Jesus as you helped us with Jordan. You were enriched in servant hood experiences in our home.
Believe me, Gabe, I know that your experiences with Jordan were not always easy or comfortable. There were times of being irritated and annoyed by Jordan or by the constant care that he seemed to demand. There were times of embarrassment for you as a middle school student or high school student when appearances seem to count so much. I believe God trained you through Jordan and in other ways that “God causes the foolish things of the world to confound the wise and the weak things to confound the mighty.” He strengthened your faith when he caused you to call out to Him for patience, faithfulness and self-control in your interactions with your brother.
God continues to teach us all and has used Jordan mightily in my life as well as yours.
Statistics show that siblings of children with special needs often go into “helping “professions. That has been true in our family since the oldest brother is a physician, the second was a teacher and you are a pastor.
I am thankful for you, Gabe, in the unique way that you relate to Jordan and for your love for him. May God continue to “grow you up into the fullness of the likeness of Christ” and use you mightily in the Kingdom.
I pray for all the siblings in the group to be “strengthened with all might in the inner man that Christ may dwell in them by faith and that they being rooted and grounded in love may come to comprehend along with all the saints how long, how wide, how deep and how strong is the love of Christ.”
May God use their sibling with special needs to help them come to that deeper, richer understanding of our Great Father and Shepherd and the love that He has for each of us.
Mrs. Gilliam’s moving letter breathed the unspoken prayer of our hearts: that we might have the privilege of seeing our children become as remarkable as the Gilliam’s and the Panel before us: healthy, well-adjusted, compassionate adults who not only share their parents’ hearts for their disabled family member, but also grew up into followers of Christ who contribute to society with the unique gifts and experiences God gave them.
In faith, we trust and believe that we, too, will write such a letter to our own grown children. Someday.
God’s Promises Fulfilled
As believers, we know the Enemy tries to keep us defeated, hindered by shame, guilt, fear or worry. Unresolved, we can become walking wounded through life, perhaps “spiritually disabled” from fully thriving or becoming all that God intended for our lives. But through these remarkable Sibs, we witnessed a marvelous display of Romans 8:28,
We know that in all things, God works for the good of those who love Him, who have been called according to His good purpose. ~ Romans 8:28
Whatever disappointments, embarrassment or hardships the enemy had intended for harm, God redeemed and repurposed to shape these Sibs for good. God used their special needs siblings and family experiences to prepare and set them apart for lives of great Purpose.
For we are God’s workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do. ~ Eph. 2:10
Even after the event ended, I noticed our Panelists instinctively tidying up the room, engaging with parents to encourage them personally, and hanging around to inquire if anything else needed to be done.
Old habits die hard, evidently.
Glory be to God…
Next post, “Sibling Panel – Part II: How To Help.” A summary of our Panel’s recommendations. Practical ways to support and nurture Sibs.
QUESTIONS:
- Share a “Sib Story” about your typical child or as a Sib yourself.
- Are you a Sib? How has growing up with a family member affected by special needs shaped who you are today?
- Do you know of a Sib? How are they different? What qualities have you observed in them, that could be attributed to their growing up with a special needs family member?
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