“Excuse me! Is that your girl? She can’t talk to my brother like that. He has autism. OK?!”

Part II of a Four-Part Series on Special Needs Siblings

This picture was taken two summer ago when Justin was five.  The boys were swimming at the pool.  An older girl about ten began harassing Jeremy, who is sweet, passive, and non-verbal with autism.  I was ready to launch into Mama Bear Mode when my kindergartener beat me to it.  Justin shouted the girl down to leave his brother alone.  Then, he pulled himself out of the pool and stomped over –bypassing me– to “educate” the girl’s grandfather in autism awareness.

I was amazed, proud and mortified, all at the same time.   It was a sharp reminder that Justin will do whatever comes naturally per his temperament, tempered by whatever cues he takes from me.

In a previous post, we highlighted our Sib Panel’s remarkable insights at growing up with a special needs brother or sister.  In this post, we share their practical recommendations, as well as additional tips, on how parents can support and nurture Sibs.

Set The Example

The atmosphere parents create towards disability will be the primary influence in shaping how siblings process it, too (e.g. grief/denial vs. acceptance, etc.)   The same applies for outside of the home.  When responding to strangers who might stare or speak rudely of their disabled sibling, children will look to parents to model a dignified, Christ-honoring response.  Talking through in advance how to respond appropriately in such encounters, can be a teachable moment:  an opportunity to shape character, teach conflict management, as well as how to protect and advocate for their sibling in a respectful way.

Another strategy is to keep a disability awareness card.  I keep mine as the wallpaper to my smartphone, ready to flash (wordlessly).  It saves me from unnecessarily lengthy explanations, especially in stressful situations (i.e. meltdowns) when my son requires undivided attention.   It’s helped diffuse the initial tension, and segues a highly charged encounter into a more constructive conversation (“Oh, I’m so sorry.  I had no idea!”) In any case, it has helped me from overreacting and saying things out of emotion that I’ll regret later.

Demystify the Sibling’s Special Needs

One Sib brought up the excellent point that she grew up unsure about her sibling’s abilities and limitations, but didn’t want to ask questions for fear of distressing her parents.  Special needs parents live immersed in the daily details of the disability, but may take for granted that children growing up in the same household may not share the same knowledge.  The Panel encouraged parents to create a healthy environment of open communication in the family, so Sibs can feel free to ask questions or express their feelings.  Validate their questions and authentically empathize with their feelings, and not hush them, which can inadvertently create an unspoken “elephant in the room.”  Parents modeling a healthy attitude and acceptance towards special needs enables it for Sibs, too.

Affirm Each Child As Equally Special

Many times, parents are unable to attend a typical Sib’s sports event or special occasion due to one parent needing to stay behind to care for the SN sibling.  Hence, Sibs can often feel neglected or secondary, due to the reality that the SN sib is often highest (neediest) priority of the family.  In “Boy Alone,” a sibling’s memoir of growing up with a brother with autism, the author recalls,

“I envied the way the room always tilted towards you, when you entered it.”  

~ Karl Taro Greenfeld

One Panelist shared how much she appreciated her father often expressing, “You are my Three Musketeers.  I love each of you the same!”  As much as possible, whether in word or in deed, celebrate each child’s uniqueness, activities and achievements.

Spend Individual Quality Time

Sibs expressed how important it was for them to spend meaningful 1:1 time with their parents, and even individually with each parent, if possible.  The memories our panelists cherished most weren’t necessarily big moments or events, but simple things like trips to the donut shop, running errands together, retrieving the newspaper, etc.  Create familiar rituals or routines that are particular to each child, and just enjoy the time together.

Encourage Them To Have Their Own Lives

As Sibs get older, they feel increasingly torn between their commitment to helping their family, with pursuing their own interests.  Encourage Sibs as they mature to develop an identity independent of the family.  Give them the freedom to pursue their own interests and develop their own gifts, without guilt or obligation (e.g. activities, serving, moving away for college, activities, etc.)

Create Family Experiences That Work For You  

Especially as SN families tend to do a lot of activities “tag team,” one panelist shared that fond memories of doing things together as a family go a long way to counter-balance the challenges of SN family life.  But the reality is that trying to have fun as a special needs family often requires extra effort, flexibility and creativity.  If parents (mom) are stressed trying to orchestrate extraordinary experiences for the family, but end up harried or overextended, their efforts actually become counter-productive.  What other typical families do for fun may not work for yours, and that’s fine. Create experiences, traditions and fun activities that work for you:  

• Vacations:  JAF Family Retreats, cruises with Autism on the Seas, autism-friendly air travel programs, Disneyland, Morgan’s Wonderland (San Antonio, TX.  The world’s first fully accessible theme park.)
• Church respites:  Our Bay Area JAF team is wonderful at keeping families apprised of local respites throughout the year.  As a self-proclaimed “respite groupie,” I try to schedule our family calendar around these.  Some families also use respites to spend dedicated time (or even travel) with their typical children, while the special needs family member is safely taken care of.
• Home Depot free Kids Workshops
• Sky High (trampoline center) Special Needs Tuesday.  Special needs kids and their siblings/friends are $5
• Sensory Friendly Films
• Special access passes at theme parks (e.g. Disneyland’s Guest Assistance Card, Great America)
• National Parks Access Pass

Take Advantage of Special Needs Resources

These supports can be extremely helpful in alleviating the load, as parents juggle to balance the needs of everyone in the family.  Here are just a few of my favorites in the San Francisco Bay Area (Silicon Valley) that can benefit the entire family:

• Regional Centers (e.g. for respite.  By the way, Medi-Cal and Denti-Cal covers dental anesthesia.)
• In Home Support Services (IHSS).  Obtain funding to hire domestic help.  Inquire with your Regional Center and/or Medi-Cal Case Worker.
• Joni and Friends, Bay Area to find local special needs friendly churches, respite events and family retreats.
• CA Disabled parking placards

Be In Community.  Have A Tribe

If “It takes a village to raise a child,” then it can take an entire nation to rally and support a special needs family.  The benefits of healthy parents trickles down to all the children.  If parents feel well-supported and are relatively stability –even experiencing joy despite hardships– that atmosphere will directly affect all the children in the family.  Parents don’t have to feel isolated.  Find people you trust and can be real with about your struggles.  And as parents get connected to other special needs families, it becomes a natural opportunity for Sibs to meet and connect with other Sibs, too.

Especially with the internet, it’s easier to connect with fellow parents, find a special needs-friendly church, join a support group (real or virtual), and subscribe to blogs of special needs parents (there are SO many!)

A small sampling of my favorite parent/family support resources:

• Joni and Friends: bookstore, radio program, devotionals, Joni’s blog
• Not Alone:  Devotionals and encouraging articles written by a community of 20+ established Christian special needs parent-authors.
• Comfort in the Midst of Chaos: Devotionals written by Barb Dittrich, a special needs ministry leader and parent
• Special Adventure Parents:  Special needs parent/caregiver support group at our church, Abundant Life Christian Fellowship in Mountain View, CA
• Parents Helping Parents: A local non-profit in San Jose, CA.  PHP offers advocacy & training resources, parent/family support programs, Sib Shops, diagnosis-specific support groups and a resource library.

Involve Sibs In Service

You don’t want them to feel obligated, since they already feel compelled to help out a lot with the family.  But you also don’t want to over-correct by not having them do anything either.  Don’t shy away from encouraging them to serve (e.g. church, volunteering, community service.)  Instilling qualities like servanthood, compassion and mission-mindedness, especially when children are young, is healthy and beneficial regardless of disability, special needs, etc.  Getting out and helping others in need can give a larger perspective and remedy a sense of, “we’re the only ones struggling!”  Set an example of serving and caring about people outside your own family, even in small ways.

• Family friendly mission trips (i.e. Club Dust)
• Sponsoring a child through Compassion International.  Sibs can help with writing letters to your sponsored child
• Assemble gift boxes for Operation Christmas Child
• Local mission projects or other service opportunities organized through your church (i.e City Team)
• Fundraisers like Walk Now for Autism Speaks, Color Me Rad
• Joni and Friends Heart for the Disabled Valentines

Give The SN Sibling Responsibilities, Too

The cry of, “It’s not fair!” is common in any family with children.  How much more so, in a special needs family.  Sibs typically already carry extra responsibility in the family.  Have high expectations for everyone.  Provide developmentally appropriate, yet meaningful ways for the SN sibling to give back to the family, and into society as possible.

Not Everything Has To Be “Because We’re a Special Needs Family”

On the other hand, not every family problem is due to special needs.  Being proactive in supporting Sibs is good.  But don’t feel obligated to do everything under the handle of, “Because we’re a Special Needs family!”  Just be a normal family, because this is the only normal Sibs have known.  If you have concern about a child struggling about their special needs sibling, don’t feel obligated to press the issue.  If parents nurture an open environment of healthy communication in the home, and encourage them to share any concerns with you, Sibs will feel free to express any special needs-specific,”Sib struggles,” or other problems as they arise.    Keep in mind that some issues are common to any family (e.g. sibling rivalry, adolescence, rebellion, etc.), and not exclusively to special needs.

Need More Ideas?

Our Panel’s insights and recommendations underscored the research shared by our Panel Moderator, Debbie Lillo.  As the Church Relations Manager for the Bay Area office of Joni and Friends, Debbie has worked extensively to support special needs families and equip churches to intentionally welcome and disciple families affected by disabilities.

Debbie also coordinates the special needs ministry track at the Bay Area Sunday School Convention (BASS), where she leads the workshop, Supporting and Nuturing Siblings of Children With Disabilities.  For our third post of the Sib Panel series (Part III), Debbie has graciously agreed to share notes from her BASS presentation.

The last post will also include a compilation of Sib support resources:  links to online articles, age-appropriate books, movies and video clips that families can review.  We hope these can serve as conversation starters, to enable families to dialogue and process the unique blessings of their family, together.

QUESTION:

Sibs, are we missing anything?  Any additional advice, tips/resources or insights to share?

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