Open Communication: The Currency of Love in Caregiving Families

My family has learned that we communicate a lot nonverbally. Carly, my sister who has Angelman Syndrome, is (for the most part) nonverbal. So we’ve learned to read the people and situations around us without needing to say much. The problem with that is that we often find ourselves frustrated and even resentful when the people around us are not “reading” what we are not saying.

Hear this loud and clear. It is okay to have needs and to express them. 

Did you hear me? It’s okay. It’s good. 

We were created to need each other. And that is a blessing! 

Then the Lord God said, “It is not good that the man should be alone.

Galatians 2:18

Caring for one another’s needs is a currency by which we exchange love! If you are a caregiver, you know this full well! We show the one we are caring for that we love them by taking care of their needs! But how do we take that currency of love to all the relationships around us and also let people love us?

As special needs families, we spend much of our lives putting aside our own needs for the more pressing needs of our family member. There is something very beautiful and even noble about the ability to do that for someone else. What an act of service and love!

However, if we completely neglect our own needs, we will slowly wear down our own ability to care well for the very one(s) we are trying to protect. 

We can tend to neglect what is going on inside of ourselves in favor of what we have to do to care for others. Then we allow moments of stress to give us permission to unleash all of the negative emotions we’ve got stored up in there. But if we can process our emotions as they come, not every stressful situation will feel like the sky is falling. 

I’m as guilty of this as anyone. But I’m learning. If you can catch your emotions early, take time to process them and evaluate what you need before the pent up emotions start creating negative behavior, anger and even resentment towards the people around you (i.e. your family), you’ll find you have much healthier and satisfying interactions them. In turn, you’ll enjoy much better relationships long term. To me, that’s well worth the effort of knowing myself and my emotions — giving them the time of day when they need it!

The best thing you can do for your sibling, parents, kids, family members and friends is to practice self-awareness and be proactive in communicating. There is enormous positive potential in sharing your own needs and asking others to share what they need. Especially in a season where most of us are experiencing more time in close quarters with those around us than ever, it’s important to learn tools for communicating well so everyone remains in good spirits!

There is enormous positive potential in sharing your own needs and asking others to share what they need.

We need practice being aware of our own needs and then learn good ways to communicate those needs.

“I’m so busy today, I’m never going to get everything done.” 

“You never wash the dishes!” 

“I wish the laundry would just wash itself!”

Believe it or not, these are not the best ways to ask for help. In fact, they’re not asking at all. Statements like this may feel like an obvious hint to those around us about what we need. But they don’t actually give effective information about how we would like to be helped! In fact, they can even communicate criticism or disappointment in others and their lack of ability to meet our needs. You’ve essentially told your loved one, even if inadvertently, that they have already lost the battle in trying to help you or love you.

Why would they try now?

We can allow moments of stress to give us permission to unleash all of the negative emotions we’ve got stored up in there. But if we can process our emotions as they come, not every stressful situation will feel like the sky is falling. 

How do we take the currency of love to all the relationships around us and also let people love us?

Let me clarify that it is totally okay to express frustrations and disappointments to your loved ones. However, it is important to check our own motives as we do so that we are not trying to send a subtle message behind our words. (We’re all guilty of it, I promise). 

  1. Ask yourself what you are feeling and why you are feeling that way.
  2. Ask yourself what would make it better or how others around you can help.
    (This sounds simple, but for most of us this is actually very difficult and might take a little soul searching, but trust me, it’s worth it.)
  3. Directly ask those around you for what you need! 

It sounds profoundly simple, I know. And it is. But once you start thinking about it, and if you’re anything like me, you’ll notice yourself trying to give subliminal messages to those around you without actually saying what you really want or need. 

I know, I know, it feels like cheating if you have to ask for it — even selfish! But the truth is, we are asking a lot of the people around us if we are expecting them to read our minds. We are caregivers! We know how to help the person we are caring for. Possibly the people we know least how to help are our other family members — and yes, ourselves

If you’ve ever been in school, you know the best kind of test is an open book test. When we expect our loved ones to know what we are asking for without us outright saying it, we are asking them to take a test on a textbook they’ve never read! The reality is, they don’t know what you need because your needs are as unique as you are.

Let’s do ourselves and our loved ones a favor this Holiday season (and all year round). Let’s give each other the gift of the answer key to us.

Let’s give each other the information we need to win in relationship with one another! 


Erin is a singer-songwriter and worship leader. Her songwriting, blogging, and speaking is often inspired by challenges and insights she experienced growing up in a family affected by disability. Erin serves with Walk Right In Ministries speaking on special sibling issues and assisting with social media. She has also served frequently in her community and home church as a worship leader.

Erin earned her Bachelor of Arts Degree in Songwriting at Belmont University in Nashville and currently lives in California where she completed three years of study at the Bethel School of Supernatural Ministry. Her latest CD Come Alive (released 2018) and is available on iTunes, Amazon, Spotify, YouTube and other streaming services.

Find out more at www.erinjamieson.com.

A Sibling’s Perspective On Visiting Home for Christmas

I think I can speak for all of us when I say the last year has been riddled with difficult decisions and the experience of being stuck between a rock and a hard place. There have been very few (if any) easy solutions in this season of life. It’s overwhelming to say the least. There are so many layers to the ways this pandemic has affected each of us.

For me, when the shelter in place was ordered in my state back in March of this year, it marked an unexpected and abrupt ending to my last year of ministry school. It was a frustrating and disappointing loss. My family had planned a trip to California for my graduation complete with a caregiver for my sister Carly so we could all enjoy ourselves through the festivities. (Carly is 22 years old and has Angelman Syndrome.) I certainly missed the opportunity to celebrate such a monumental moment alongside my family whom I hadn’t seen since Christmas 2019.

Of course at that point in time, none of us knew the extent to which this pandemic would encroach on our plans, and our lives.

I knew when I moved across the country from my family that there would be times we would have to go long periods of time without seeing one another. But I never imagined having such a barrier between my family and me. I never imagined a world where I would have to protect my sister by staying away from her.

Erin (left) and Carly (right) enjoying the snuggle-hug we all love.

For most of the fall it looked like I wouldn’t be coming home for the holidays this year. Trying to navigate travel and figuring out how to adequately quarantine and protect my family while limiting my time away from my commitments back in California was a feat.

I never imagined a world where I would have to protect my sister by staying away from her.

For better or worse, the lockdowns in my state actually allowed me the flexibility to come home for the holidays. However, in order to limit travel, coming home for Thanksgiving meant staying through the New Year—a break I would have been used to in my college years, but a long time to be away from your own home when you’re 25 years old.

Bittersweet. It’s all bittersweet. Opportunities borne out of frustrating circumstances.

One of the gifts of being away for long periods of time is that I come back seeing things from a different perspective. I’ve been able to encourage my parents and Carly’s caregiver by sharing progress I see that they don’t always fully recognize when they are with her every day. It’s also hard to see, up close, the ways this pandemic has challenged them all. Carly is extremely adventurous and social. It is heartbreaking to see her working so hard to cope with the changes and navigate what is going on. I have been encouraged to see her doing so well despite how immensely difficult this season must be for her.

One of the gifts of being away for long periods of time is that I come back seeing things from a different perspective.

Carly’s favorite times seem to be when everyone is together. I know that my presence brings a certain amount of peace to Carly. But I also know the confusion and grief she will feel when I again leave for another unknown period of time.

Through it all, I am feeling so thankful to get to be with my family this Holiday season, knowing it could easily have gone differently.

As a sister, it’s wonderful to know that bringing myself back into Carly’s world can bring some normalcy and joy to this chaotic season of her life.

And I know that some Carly snuggles will do me worlds of good too.


Erin is a singer-songwriter and worship leader. Her songwriting, blogging, and speaking is often inspired by challenges and insights she experienced growing up in a family affected by disability. Erin serves with Walk Right In Ministries speaking on special sibling issues and assisting with social media. She has also served frequently in her community and home church as a worship leader. Erin earned her Bachelor of Arts Degree in Songwriting at Belmont University in Nashville and currently lives in California where she completed three years of study at the Bethel School of Supernatural Ministry. Her latest CD Come Alive (released 2018) and is available on iTunes, Amazon, Spotify, YouTube and other streaming services.

Find out more at www.erinjamieson.com.

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.