Special Siblings Needs Safe Places to Process Life

I’ve been thinking a lot lately about how important open communication is for growing children, especially those who grow up as siblings of someone with disabilities, chronic health conditions or other special needs. The stress, chronic grief and complex logistics of their lives warrant heightened intentionality about keeping lines of communication wide open. Our kids need more than adequate opportunity to process their complicated lives with all the associated emotions, pressures, challenges and even the intense joys.

My husband, Larry, and I tried to provide this kind of safe zone for our kids when they were growing up at home. We also encouraged their relationships with mentors at church and with our adult friends. We deeply appreciated that grandparents, aunts and uncles served in this way too. And we sought out counselling for them when it seemed appropriate (at school and with Christian professionals). As they have come into adulthood, our children are now passionate about helping other special-needs siblings to communicate and connect in relationships that keep them thriving too.

“Our kids need more than adequate opportunity to process their complicated lives with all the associated emotions, pressures, challenges and even the intense joys.”

No matter how old our children are—very young, teenaged or adult—I think parents owe it to their children to be among their safest places to land. Don’t we all want our kids to be emotionally and spiritually healthy and confident? I expect they’ll be most socially satisfied when they can be transparent in relationships. And they’ll be most emotionally grounded when those relationships are based on biblical values. So, when they need to ask questions or just process their thoughts and feelings, I want to be the kind of parent who is available, compassionate and wise. I want to listen with genuine curiosity and very little judgement. Especially when our kids were young, I also wanted to recognize when it was necessary to initiate certain conversations knowing that my children wouldn’t always recognize when they needed to talk something out. As one of our daughters was growing up, Larry was particularly good (much better than me) at drawing out her deeper or unrecognized (but necessary) feelings.

To this day, Larry and I tend to be conversation starters who seek to know what’s going on in our children’s hearts and minds. I want to be a better listener though. I tend to ask questions well but interject my own perspectives too often. Time and time again, I keep learning from what my children have to say.

Over the years, I have had countless conversations with my children about what it is like for them growing up in a family with special needs. Sometimes these conversations were welcomed and sometimes they were met with an eyeroll. “There goes mom again,” they seemed to say. “I don’t feel like talking about this subject right now,” was the message I got loud and clear. I had to get creative and as casual as possible about how I slipped questions into our conversations in the car or around the dinner table, for example. Yes, these are often hard conversations that nobody really wants to have. And so, we tend to avoid or under value the benefits. Still, I try to respect their space and give them a pass when I sense the eyeroll while conveying a simple reminder that my door is always open if they want to talk. Really, don’t all kids need that, even if they aren’t part of a special needs family? They need our accessibility and our respect. Now that my own children are adults, they admit that it was good for me to urge their openness now and then.

“No matter how old our children are
—very young, teenaged or adult—
I think parents owe it to their children to be among their safest places to land.”

Here’s another thing I noticed as our children were growing up. They ebbed and flowed through different stages of need for information and understanding about our situation as a family with special needs. Just like when they were learning about sex, I responded to their questions with increasing details as they grew in maturity. Similarly, I watched their questions, feelings and perspectives about being part of a special needs family change through different seasons of life. Now that they are meeting more and more peers who are also special-needs siblings, they are discovering how valuable it has been for them to have safe places to ask questions, express frustrations and disappointments, share ideas and have their perspectives valued. They see that not all special-needs siblings have adequate opportunities for that kind of processing.

A couple of years ago when my daughters and I started speaking around the country about parenting special siblings, I created a list of “Conversation Starters for Parents.” And along with that, there was a “Guide for Parents’ Reflection.” Click here to download these resources.

It can be a challenge knowing how to check in with our kids often enough but not so frequently that we irritate them. I have to remind myself sometimes that I’m asking primarily for their benefit, not my own. I also have to be careful about how frequently or intensely I share about my own grief with them. To some extent, I need to model healthy grief processing and stress management. I want them to see that I understand and resonate with them. But I know they need to understand my experience without mine superseding theirs.

“MY KIDS NEED TO UNDERSTAND MY EXPERIENCE WITHOUT MINE SUPERSEDING THEIRS.”

I’m thankful that none of us is ever too old to begin processing questions, feelings and perspectives along with our children. I’m coming to see this as one of the most precious rewards of having adult children. By raising them in an atmosphere of safe communication, we now enjoy treasured friendships with each of them.


To read more about great communication with special-needs siblings, check out this article from Church4EveryChild.com.

Click here for my full series of articles about ministering to people who are siblings of someone with special needs.

There are some common questions siblings may be asking themselves or others through the different life seasons. 
Click here to download the “Sibling Season Questions” file.



This post by Lisa Jamieson first appeared June 2018 at LisaJamieson.org.

Cooperative Cocooning

This pandemic season is creating a unique opportunity for intimate bonding with those we are closest to in life. Sure, it doesn’t always look or feel like creating sweet memories together. Bonding doesn’t always come easily in our home, that’s for sure! But our family is benefiting from learning to prioritize encouragement and cooperation. And I think — I pray — that a lot of us will look back and see that something very special happened in the grand scheme of this season.

Last week, we took some time out of quarantine tedium to play with friends on Facebook. Carly and Claire joined me for a Real Talk livestream we called “Pandemic Edition #1.” We sure had fun making some trail mix, playing a couple of online games with viewers and exploring what it looks like to “cocoon” well. The following notes share highlights from that conversation.


Thriving families have compassion for each other’s unique needs and they learn to cultivate a cooperative environment in their home.

  • Stress, anxiety, fear, fatigue, burnout and breakdown are minimized when we pay attention to each other’s unique needs for casual relationships, emotional connectedness, task orientation, control and decision-making. (For us, this includes paying attention to the family’s needs but also care support staff with Carly as well.)
  • Not everyone expresses their needs as openly or clearly as others. That doesn’t mean the needs don’t exist. The ways and degrees in which we express our needs to others can be influenced by our own natural inclinations but also by how we were raised, how safe we feel to speak up or whether we’re trying to protect others from others from more demands. Some of us simply aren’t that self-aware. And children are often not mature enough to know how to articulate what they are feeling or needing. In a cooperative environment, we are attentive to one another and help each other recognize and meet needs in healthy, God-honoring ways.
  • It’s not all about bonding and attachment to each other though. For many living in close confinement, there will be a need to learn/teach healthy detachment too. It’s okay for someone to take a break and go shut a door for a little while.

There are tremendous benefits in being intentional about caring for the soul needs of each person in your pandemic season cocoon. Why am I using the term “cocoon?” Cocooning is a term often used by adopting families for a period of seclusion they hold after an adoption. It allows for bonding while also protecting the immune system of an international child who isn’t yet vaccinated and wasn’t necessarily born to a mom with immunities to the various things someone might be exposed to in our country.

Cocooning is a term often used by adopting families for a period of seclusion they hold after an adoption. It allows for bonding while also protecting the immune system.

We all have our own unique soul needs. I used to read Psalm 139 with the focus of my attention on the way God had woven my body in a physical way. But God’s words took on deeper meaning when I considered that my “delicate” or “inward” parts included the way I think, how deeply I feel things, the way I express myself, the degrees to which I find fulfillment in tasks — all the complexities of my soul.

13 For you formed my inward parts;
    you knitted me together in my mother’s womb.
14 I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
    my soul knows it very well.
15 My frame was not hidden from you,
when I was being made in secret,
    intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
    the days that were formed for me,
    when as yet there was none of them.

17 How precious to me are your thoughts, O God!
    How vast is the sum of them!
23 Search me, O God, and know my heart!
    Try me and know my thoughts!
24 And see if there be any grievous way in me,
    and lead me in the way everlasting!

When God calls us His masterpieces (Ephesians 2:10), He means every detail about who we are is His handiwork. That includes our physical anatomy as well as our soul. Our soul craves communion with Him yet we chase things of the world to fill our needs. In quarantine season, in caregiving season, in any season when the needs of our soul are strained, we need Jesus most of all. But Jesus has compassion for us and gives us gifts out of the world to reveal His intimate understanding and value of us too.

These are some general areas where we each have our own unique degrees of need:

  • SOCIALIZATION or how we are satisfied in relationships includes two very different layers of social-emotional need.
    • Inclusion — a sense of casual association and connectedness
    • Affection — a sense of emotional connection within deeper relationships that is expressed through words (e.g., appreciation, affirmation) physical touch (e.g., hugs, snuggling, holding hands), gifts, acts of service and more
  • TASK ORIENTATION is not everybody’s genius. Staying focused or disciplined with accountability or inspiration can be tremendously challenging for some. For others (and I’m talking about me here), the “almighty task rules!” One inclination is not better than the other, just different.
    • A few people are appreciating that there are fewer distractions so they can tackle their lists and even catch up on some things around the house. (Take advantage of your natural household project managers and use this time to develop administrative skills in younger children.)
    • It will help some people to alternate between tasks and social activities, avoiding a focus on one or the other for long periods of time.
    • Some will find it helpful to complete tasks when they are connected with some social component.
  • CONTROL & DECISION-MAKING responsibilities may be shifting considerably during this quarantine season.
    • Logistics (groceries, healthcare, germ management, household clutter) must be managed differently for now.
    • Circumstances out of control may incline some people to overcompensate with substitutes. For example, a tidy house can create an illusion of control when everything else feels like chaos. A purged closet may refresh and energize the person whose heart is heavy with worry.
    • Pacing time in new ways will be energizing for some and exhausting for others. A slower pace can be very satisfying or will trigger anxiety in those who enjoy being busy.
    • Changing your environment can be a way to lift spirits. For example, rearrange the family room furniture, let the kids change around their bedrooms, use special plates for dinner, have a crazy hair day or purge some toys and clothing into “junk” and “share” boxes.
    • Giving each other plenty of choices. (For our daughter with special needs, this means pulling out neglected laminated photos, objects and iPad apps like GoTalk Now.) This can feel freeing and empowering when so many of our circumstances feel out of control. But some people feel overwhelmed by needing to make decisions. Perhaps you are someone who likes to share decision-making responsibilities. Doing so alone triggers anxiety or frustration. Collaborate on decisions as spouses or family whenever you can.

Just like having physical needs (body), God created us with mental and intellectual capacities (mind), and also emotional and spiritual needs (spirit). None of these needs is bad or wrong. But if our needs don’t get met, we tend to sink into our weaknesses and experience things like anxiety, depression, exhaustion and even sin.

We thrive when we learn to let Jesus fulfill the desires of our hearts more than anything or anyone else. As our Creator, He knows us intimately and He only gives good gifts to His children. After that, we can enjoy His generous gifts from the world in healthy, godly ways. And that includes living in cooperative and complementary ways with others.

Psalm 38:9
You know what I long for, Lord;
    you hear my every sigh.

Matthew 6:33
Seek first the kingdom of God and his righteousness, 
and all these things will be added to you.

Around here, we’re trying to be attentive to what each other needs and have each other’s backs. That starts with praying for each other and then includes examples like these:

  • Giving each other permission to express and satisfy soul needs (harder for kids and some temperaments)
  • Inviting each other to rest or take personal time (private places, dedicated time)
  • Leaving a bedroom or office door open or shut (or putting a sign on the doorknob) showing kids/others when interruptions are welcome and when they are not
  • Defining or redefining roles and responsibilities according to how each person is most energized
  • Making our home a safe space to process things like grief and disappointment
  • Trying to call out the positives at least four times as often as we correct/coach/redirect
  • Learning cooperation and teamwork but relying on Jesus first and foremost (which also prevents us from putting unreasonable demands on each other)

In a cooperative environment, we are attentive to one another and help each other recognize and meet needs in healthy, God-honoring ways. #CooperativeCocooning

These verses have been so helpful to me in the last several days:

Psalm 94:19
When the cares of my heart are many,
    your consolations cheer my soul.

Psalm 139:23-24
Search me, O God, and know my heart;
Test me and know my anxious thoughts.
Point out anything in me that offends you,
and lead me along the path of everlasting life.

Here are some more specific things that are working for me and my family:

  • Keeping track of my own thinking patterns and paying attention to shifts in my mood so I can take my thoughts captive to Christ (2 Corinthians 10:5)
  • Listening to LIVE broadcasts that keep me feeling connected in the world
  • Having LIVE conversations that connect me emotionally to those I care deeply about (Note: turn-taking chat apps meet a different need than live conversations on the phone, FaceTime, Skype, Zoom, etc.)
  • Finding a person who gives me energy and spending a few minutes chatting
  • Texting in group chats with extended family who are geographically separated
  • Pacing my breaks (and what I do with those breaks)
  • Baking with Carly or playing a game
  • Going for a drive (sometimes getting gas or car wash)
  • Taking a prolonged shower or bath
  • Rearranging furniture or moving to a different room from time to time (change of environment)
  • Putting out some decorations for Easter or spring (you could make some new ones too!)
  • Building a fort
  • Getting off the couch and having a dance party
  • Spring cleaning
  • Playing favorite games (egg hunt)
  • Planning and doing a special project (We’re hoping to surprise our neighbors’ kids with an Easter Egg Hunt blessing. Hopefully, they won’t read this blog until Easter Monday!)

We thrive when we learn to let Jesus fulfill the desires of our souls more than anything or anyone else. After that, we can enjoy His generous gifts from the world in healthy, godly ways. And that includes living in cooperative and complementary ways with others.

What’s working for you?

Tell us in the comments of this post about how your family is trying to make the best of this highly remarkable experience of life.

During this season of social distancing, we can learn rest in Jesus most of all but also meet each other’s soul needs in ways that are complementary and cooperative too.


You can watch Pandemic Edition #1 of REAL TALK livestream here.

Lisa Jamieson is an international speaker, author, caregiver advocate and licensed pastoral counsellor. Her passion is spurring special needs families toward growing intimacy with Jesus and thriving relationships with each other. She is co-founder and executive director of Walk Right In Ministries and leads the Minnesota Disability Ministry Connection. Lisa is a member of the Sarasota Academy of Christian Counseling certified in Christian temperament therapy. Her books and Bible studies include Jesus, Let’s Talk which was inspired by her daughter, Carly, who has Angelman Syndrome. Lisa and her husband, Larry, have been married for 31 years and have three grown daughters.