Respite Rhythms (Part 1): Start with Trust

Parents, adult siblings, and others who care for someone with complex medical needs or developmental disabilities struggle to get the breaks and rest they need. The obstacles are numerous and varied so it is tempting to just quit trying. I’m here to suggest there is a way to approach respite that offers some satisfying and beneficial balance.

There is an adequate rhythm of rest to be found and it’s as unique as you are.

Now before you tune me out because your situation seems impossible, hear me out. I intimately understand many issues getting in your way. My own daughter’s medical and behavioral needs are tremendously complicated. I am hesitant to leave her in someone else’s care — for her sake and theirs. The reality is, even when I am desperate and my need for a break outweighs other concerns, relief is not always available. It is also true that I am often simply too tired, busy or distracted to investigate options. The idea of persuading helpers and facing potential rejection is exhausting too.

Probably like you, I’ve been tempted to minimize the need, ignore the need, or altogether give up trying to find ways to get my needs for rest met.

Yet some reasonable amount of regular refreshment is essential for having meaningful and enduring relationships, maintaining the physical and mental stamina, keeping emotionally balanced, and experiencing a sense of joy in ordinary life.

I tend to believe that I am my daughter’s most safe place. I feel a tremendous responsibility in being her primary protector. I can even tend to feel responsible for protecting others from her care. It can be hard to see the boundary lines between my responsibility for Carly and God’s capacity to ensure that she is protected, even if I am not always there for her.

Caregivers often have trouble believing that their constant caring can be interrupted without dire consequences. Tired caregivers may avoid setting limits on what their loved one demands. And they may have difficulty being confident that anyone else will do an adequate job.

Caregiver enmeshment is a symptom of lack of trust and even pride. “Ouch!” you might say. Believe me, I understand how vulnerable our loved ones can be. But let’s be honest, we are powerless over so much more than we choose to accept. We must never lose track of our personal limits — physically, mentally, emotionally — and what we are called to do. Then we must do no more and no less than that.

Moses’ own mother Jochebed had to face a similar recognition of her limits and trust God. She painted pitch on a basket to keep it safely afloat holding her son. But she ultimately put her trust in God when she set that basket in the reeds. His parents took a step of faith (Exodus 2). They could do no more and no less than that.

If I want God to do a miracle in my daughter Carly’s life, I need to get out of the way and give Him room to do it.

Matthew 13:58
And so [Jesus] did only a few miracles there because of their unbelief.

Almighty God has repeatedly shown us a model for patterned trust — and it often looks like rest. God created the universe in six days, then rested on the seventh day. God provided manna in the wilderness for six days out of every week — for 40 years — but not on the seventh day. He gave a double measure of manna on Day 6 so that everyone could and would rest on Day 7.

There are so many more rest and boundary patterns to be found in the scriptures. And there can be wonderful value in spending time exploring them. But one word points us to God’s motive — trust. God desires intimate relationship with His beloved creation. And trust is an utmost measure of intimacy.

We trust God by slowing down, paying attention to Him, setting all other loves and concerns aside, and trusting Him to use His power, wisdom, and provision for our best.

Jesus prioritized both personal boundaries (self-care) and prayer (soul care). In his book, Your Best Life in Jesus’ Easy Yoke, Bill Gaultiere suggests it is especially important for caregivers to “learn to set limits for their own soul care.” He points out that Jesus “had far more stress, far more pressure, and far more responsibility than any of us and yet he remained relaxed, joyful, and generous with people.”

You might be thinking — sure, but Jesus was God, and I am not! Well, true enough. Jesus was exceedingly committed to His Father and to His calling. Yet, we can learn a great deal from what Jesus models. More than that, we can rely on the Holy Spirit to guide, provide, and empower us for rhythms of grace and rest with Jesus as our Supreme Guide and Protector.

Mark 4:38-40
Jesus was sleeping at the back of the boat with his head on a cushion. The disciples woke him up, shouting, “Teacher, don’t you care that we’re going to drown?” When Jesus woke up, he rebuked the wind and said to the waves, “Silence! Be still!” Suddenly the wind stopped, and there was a great calm. Then he asked them, “Why are you afraid? Do you still have no faith?”

RELATED: Jesus Set Boundaries

HABIT #6 OF CAREGIVERS WITH A ROBUST SUPPORT SYSTEM
Find your personal pace for an adequate rhythm of respite.

As we launch into this three-part blog series on respite rhythms, it’s helpful to reflect on the definitions of three critical words while holding fast to our trust in God:

Respite
a short period of rest or relief from something difficult or unpleasant.

Adequate
good enough; sufficient for a specific need or requirement; of a quality that is acceptable but not better than acceptable

Pacing
walk at a steady and consistent speed; lead in order to establish a competitive speed.

Did you notice anything helpful from these definitions? Words that stick out to me include — short, rest, relief, difficult, sufficient, specific, acceptable, steady, lead.

I’m not a fan of the word “short” in this context. (We’ll talk more about that word later.)

That last word is especially intriguing to me. Lead! How often I have felt like a victim of my circumstances. My family is at its strongest when we follow Jesus’ lead in advocating for rest rather than allowing the situation to dictate our patterns. We often struggle to know how to wear the yoke of caregiving in strength. Like an immature ox, we strain and charge into the job forgetting that we can trust Jesus’ invitation.

Matthew 11:28-30
Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. For my yoke is easy to bear, and the burden I give you is light.”

In caregiving as in all of life, we’re in a learning process. We don’t need to do it all perfectly. Progress toward the goal is a powerful energizer and encourager.

Begin asking God what kinds of respite you need to keep yourself in an acceptable and progressively improving pattern. How might you go about receiving a degree of relief that enables you to maintain reasonable consistency in your quality of life and the quality of care you are able to give your loved one?

Cultivating a robust support system is certainly part of this. But there’s more to it. We’re going to explore that over the next couple of weeks.

Because finding adequate respite rhythms holds such significant opportunity for caregivers, we’re devoting the next three posts to the topic. We’ll be exploring more ways of finding a reasonable pacing of refreshment in your family and/or marriage when living with someone who has disabilities and/or complex medical needs. Watch for Respite Rhythms (Part 2) next week.

Respite Rhythms (Part 1): Start with Trust
Respite Rhythms (Part 2): How Much is Enough?
Respite Rhythms (Part 3): Pace Yourself!

RELATED: 8 Habits of Caregivers with a Robust Support System

“Due to God’s common grace, no one exists in the extreme of complete brokenness. Due to the fall, no one enjoys the extreme of complete blessing.”

Stephanie O. Hubach, Same Lake Different Boat

Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Together, the Jamiesons founded Walk Right In Ministries in 2008, a non-profit organization building faith and community with special needs families.

Tips for Caregivers About Expressing Help and Encouragement

This tenth and final article in our “sweet spots” series explores how uniquely each of us expresses help and encouragement within a family impacted by special needs.

Who doesn’t love a good cheerleader? We all need encouragement, in one form or another. It is essential nourishment for our souls. Just as our bodies become starved and will die when deprived of food or water, our souls will wither and dry up without confidence, inspiration or hope.

One of the many challenges in a caregiving family is that we are typically exhausted and can be rather needy of extra encouragement. On a regular basis, I hear from special needs caregivers and families who view themselves as “high maintenance” in this area. Many struggle with feeling guilty about being so dependent in this respect. Many simultaneously resent that their needs are accentuated by their circumstances. You may understand what it feels like to push down the ache in your soul and try to be satisfied with whatever help and hope comes your way.

The exchange of love and affection is a form of encouragement. In their book Sharing Love Abundantly in Special Needs Families, Gary Chapman and Jolene Philo suggest that “caregiving parents who know about and implement the love languages say they are a simple and effective way of filling a spouse’s love tank and reinforcing the glue that bonds them together.”  

Unfortunately, the isolating nature of caregiving can cause the emotional “love tanks” of special needs parents and other family members to run vulnerably low. This is even more true if the loved one needing care is non-verbal, requires intensive care or if anyone in the household is not being very expressive.

Surely there are countless ways to express love and bring encouragement. The Love Languages® are a powerful tool to help us. God’s Word tells us to keep on encouraging each other (Hebrews 10:24-25). But fatigue has profound influence on the tone, manner, and frequency of our communication. And we all know that words and expressiveness flow more freely among some of us than others.  

DISCOVER your Love Language® by taking an online quiz.

Expressiveness is an interesting thing. God’s design of each person is infinitely personal and always purposeful (Psalm 139). He creates every individual with their own temperament — their unique types and degrees of need as well as their own unique capacities for expressing their needs, thoughts, and feelings.

Someone may think or feel deeply while also expressing those things freely. Another may think or feel deeply yet not express those thoughts or emotions in similar proportion at all. And there is every combination in between.

God’s design of each person is infinitely personal and always purposeful.

What that means in this area of encouragement is that the exchange of encouragement, love and affection will not always feel equally or adequately reciprocated within a family. You may be generous with hugs for your family member. But do they receive them with the frequency that they actually need them? Is your capacity for giving them limited by how God created you to be or because your circumstances have you distracted? These are the kinds of questions worth sorting out. It matters where we draw our energies from.

Teenager problems – Mother comforts her troubled teenage daughter

To make things even more complicated, we don’t always express ourselves in alignment with the way God designed us. Various factors influence this. Consider just a couple of examples. You may have learned certain behaviors based on how you saw encouragement modeled by your parents. Or you may have developed an expressive personality because gregariousness was highly valued in your upbringing. You may have grown up among siblings where competition for attention influenced the choices you made about how you expressed yourself. You may have observed expressiveness handled poorly leading you to choose a more subdued way of behaving. You may have a friend, spouse or child whose need for “strokes” feels so demanding that you’ve started to pull away. Your own withdrawal or outbursts of emotion may leave you feeling defeated, ashamed, or frustrated.

Why is it important to understand these nuances about needs and expressiveness? Because compassion blossoms from places of understanding. Understanding your own degrees of need and expressiveness helps you develop compassion for yourself. It can help you to see your own strengths, weaknesses, and vulnerabilities more clearly. Similarly, understanding the needs and degrees of expressiveness of those around you is also helpful. You can hold more reasonable expectations of others and feel even more appreciative when you recognize what sacrifices are being made to live and serve cooperatively. From compassion flow things like grace, patience, and respect.

The need for encouragement may be even more pronounced when someone is facing stresses like those involved in life challenges such as disability, health crisis, and financial strain. Personally, it means the world to me when someone spurs me on with encouragement, truth, and words of appreciation. And this is never truer than when I’m especially worn out, worried, lonely, or otherwise stretched by caring for my daughter.

When stressful situations erupt, the deepest needs of our souls will reveal themselves.

Are you one of those people who intuitively recognizes the needs and opportunities around you for bringing help or encouragement? Allow me to affirm the precious value of your gentle, tender-hearted spirit and generous ability to express things like empathy and support.

Be on guard, however, for that fact that a great capacity for serving and caring can make a person vulnerable to feeling taken advantage of, or taken for granted. It can be exhausting to be an encourager if you don’t feel that is reciprocated in some way. Being accommodating should not mean that your own needs are completely ignored. In any healthy family, even the caregiving family, no one person’s needs should dominate entirely. If this is an area of vulnerability for you, it will help to make sure you are voicing your needs clearly, directly and respectfully.

Self-advocacy skills can be challenging for some who are naturally servant-hearted. Make it a priority to find at least one person you can go to whenever you need a boost of confidence or be reminded of your great value.

RELATED: BOOSTING FAMILY MORALE: Seven Ways to Energize & Refresh Your Special Needs Family

When a cooperative environment is established in your home and within your caregiving team, each person is willing to develop understanding and compassion for each other. You’re able to appreciate that each person is unique and considered by God to be His masterpiece (Ephesians 2:10). You will also realize that each of us is in process. In other words, we’re not perfect yet. The caregiving team or family that lives cooperatively, learns to appreciate the special strengths that each person contributes and has compassion when anyone struggles with their weakness.

Compassion blossoms from places of understanding.

Be aware that some people in your caregiving circle may not appear to need a lot of encouragement or attention, when in fact they actually do. Pre-teen siblings, for example, may be maturing enough to appreciate that mom and dad are stretched thin and learn to seek affection in other places. Or they may act out with negative behavior because it seems to be the only way they will get their need for attention met.

Any of us can fall into similar patterns of negative, even ungodly, behavior in attempts to get the deepest needs of our souls met. When stressful situations erupt, the deepest needs of our soul will reveal themselves.

The reality is, the world will always fall short and disappoint us. We are all inherently selfish and struggle to live cooperatively with each other. We need God’s help.

Your Divine Cheerleader never ever gives up on you.
God has your back.

Your caregiving family will thrive when it features faithful encouragers while making God the primary Source. Seek the Lord for provision of the support you need to stay refreshed, motivated, and reminded that there is great purpose in your situation and role.

RELATED: Tips for Caregivers: Feeling Valued and Competent

As a cooperative and encouraging environment is cultivated in your home, everyone will find a growing sense of freedom and acceptance. You’ll be more compassionate and supportive in each other’s weaknesses. And each person will be celebrated for their own strengths.  

TAP YOUR CAREGIVING STRENGTHS BY BEING SPECIFIC, GENEROUS AND GENUINE WITH YOUR EXPRESSIONS OF LOVE AND RESPECT

If you’re energized by giving encouragement or help to others…

  • Serve your family and caregiving team by frequently reminding them they are seen, valuable, loved and appreciated by you and by God
  • Pray for opportunities to give spiritual, emotional, or practical encouragement where it is needed
  • Avoid using encouragement or acts of service to manipulate others
  • Keep healthy internal boundaries while also being clear and direct about your own needs
  • Be specific with your words of love, affection, appreciation, and affirmation
  • Learn to be compassionate and patient with those who demand a great deal of attention
  • Help others learn to rely more on Jesus to feel loved and secure than on anyone else
  • Cultivate intimacy with Jesus to meet your own deepest needs for love and security

The Bible offers an abundance of guidance for people who are generous encourages or helpers:

Matthew 5:5
God blesses those who are humble, for they will inherit the earth.

Matthew 5:37
Just say a simple, “Yes, I will,” or “No, I won’t.” Anything beyond this is from the evil one.

John 5:44
No wonder you can’t believe! For you gladly honor each other, but you don’t care about the honor that comes from the one who alone is God.

2 Corinthians 9:7
You must each decide in your heart how much to give. And don’t give reluctantly or in response to pressure. “For God loves a person who gives cheerfully.”

Ephesians 3:12-19
I pray that from his glorious, unlimited resources he will empower you with inner strength through his Spirit. Then Christ will make his home in your hearts as you trust in him. Your roots will grow down deep into God’s love and keep you strong…then you will be made complete with all the fullness of life and power that comes from God.

Lord Jesus, thank you for giving me the heart to serve my family and others. Your works are wonderful, and I know this well. I confess that sometimes I take on “yokes” that don’t belong to me or to me alone. I also resent when my burdens feel unequal to the load others are carrying. Help me to care for others as You call me to — no more and no less. Be my Source of comfort and strength so I don’t become weary or start to feel taken for granted by others. Show me how to express my own needs clearly and respectfully. Teach me if there be any impure motivations for my expressions of love and care. Fill me with Your Holy Spirit to be genuinely and generously compassionate. In Your mercy, Jesus, send more helpers and encouragers to my family so that our family can thrive and so that many will know You are alive, accessible, powerful, and good! Amen

Tell us in the comments what helping and encouraging looks like for you and in your family!

Send us your questions and join Lisa LIVE on Facebook April 15th!

Lisa Jamieson

Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Together, the Jamiesons founded Walk Right In Ministries in 2008, a non-profit organization building faith and community with special needs families.

Tips for Caregivers Who Find it Refreshing to Get Organized

This is an ongoing series exploring what puts caregivers in their “sweet spots” when supporting a family member with special needs. In today’s post we’re exploring some challenges and opportunities for caregivers who are refreshed by getting organized. We’ll also look at what is different when being organized comes naturally compared to when it is a learned skill.

Some people learn to be well organized. Others are just born with the gift. In any case, having an effective organizer on the team of caregivers supporting your loved one and family is a valuable blessing.

There are numerous daily ways our caregiving household has benefited from serious organizational skills. I’ve included examples at the end of this article. You may laugh or cry at the absurd detail reflected in the list and photos. Or you may nod with respect. Many families raising children with disabilities will relate.

When I think of all the ways and times that organizational skills have been helpful to my own family in supporting Carly, my mind swirls with memories. My earliest recollection of bringing order to chaos involves feeding her during infancy. Because of Carly’s challenges with sucking, swallowing, reflux and being held (sensory issues), my husband, Larry, and I were forced to develop a feeding routine aimed at keeping her calm and thriving. This had to happen while also caring for two older children and maintaining the business we owned at the time. To say those days were hard is an understatement, but they were doable and tolerable, in large part, because we both had some natural abilities for creativity and organization. Without a doubt, we had the indwelling power of the Holy Spirit to keep us persevering!

Thankfully, this is an area some have called my “genius.” There’s no denying organizational abilities seem to ooze from my blood. But the truth is, there is no shortage of organizational blood around here. Others in my family are also gifted organizers.

One example is worth taking time to explain. It powerfully illustrates how our daughter, Alex’s, organizing efforts led to our most enjoyable family Thanksgiving vacation to date. Holiday travel has been emotionally difficult for us. We manage well through the logistics of packing for Carly’s needs. But we have problems managing grief, frustration and resentment as those vacation days unfold. While the crew is wanting to play games, do puzzles, go for walks, watch movies and enjoy a glass of wine, each member of our immediate family is ever mindful of Carly’s needs. There is no escape from managing her sleepless nights, next hydration break, toileting needs, special meal prep, medication schedule, stress behaviors and boredom. We have all experienced some emotional burdens from this during vacations and holidays.

A couple of weeks before one Thanksgiving road trip, Alex approached me about creating a Carly care schedule for our week together. At that point, Alex was an adult working in a career that involved the daily use of spreadsheets. She already has a keen mind for organization but her mastery of spreadsheets has also become impressive. She kindly pointed out that Carly’s cares follow a clear routine of shifts at home that descend into spontaneous ambiguity when we’re on the road. Our family’s ability for tag-teaming has some obvious advantages but it leaves all of us feeling like we never really get a break.

Alex’s proposal aimed at ensuring there were defined compartments of time when each of us could anticipate being on and off “duty.” We agreed this would be a casual schedule adhered to in a relaxed way. For example, we didn’t define specific start and stop times for shifts. Instead, we simply identified who would have “lunch time on Tuesday” and who would take over for “afternoon” or “early afternoon” once lunch was finished.

It all started with identifying each person’s preferred shifts and breaks. She offered to create a spreadsheet and post it on the refrigerator for the duration of our visit. She also reminded me that Carly’s aunt and cousin have offered to help in the past but just weren’t sure what to do or how to do it. She said, “mom, we can just give them really short times of responsibility and a small list of ideas about what they can do with Carly when it’s their turn to be in charge.” I wish I could say I warmed to the idea immediately. It took a couple of days for me to envision how it could work but I got there.

When all was said and done, the rewards of Alex’s spreadsheet were too many to count!

WATCH: Family Systems and Holiday Gatherings

It must be said, Larry and I are exceedingly privileged and thankful to have adult daughters willing to partner with us in caregiving when we’re all together. I assure you, we don’t take it for granted. And I wasn’t always sure it would be that way. The countless reasons why grown siblings of someone with disabilities may want to avoid coming home for holidays, or at all, are material for plenty of other blogs.

WATCH: Parenting Special Siblings

One things is certain, being organized is a great asset in caring for our loved ones and in cultivating a higher quality of life for all of us.

Learned Behavior Is Not the Same As Natural Ability

As with so many skills, there is an important difference between learned behavior and natural ability. Those people who have the inborn capacity to be organized will not just be good at it, they will have significant need to employ the gift. They may even become more energized by activities involving putting things in order. If they are not given freedom and opportunity to bring order to situations and spaces, these folks will actually grow weary. They will tend to experience stress and become anxious. A natural-born organizer will shine in an environment where they have freedom to try their ideas. Most of their motivation will come from within.

On the other hand, someone with learned organization skills will be more inclined to see an organization project as a task to check off of a list or even a chore. They may have a heart to serve but not feel particularly motivated about something like problem solving or decluttering. They may appreciate a peaceful space and have the capability to tidy things up themselves but, given the chance to have someone else do the tiding for them, they would jump on it. When putting things in order is strictly a skill of necessity, a person can even become exhausted or overwhelmed, particularly if the pressures to organize remain prolonged, complex or unappreciated. To stay inspired, these caregivers will need steady doses of genuine encouragement and appreciation. Seeing rewards for their efforts will help keep them from giving up.

Sometimes, even the best of organizers will appear to procrastinate. The fact is, they may be taking extra time because they’re trying to figure out an ideal solution. The fear of implementing an inferior or imperfect solution may delay some organizers from tackling a project that feels complicated. A fear of appearing incompetent can be also debilitating.

It will be beneficial to understand specifically what may be hindering a person from employing their organizing skills. An intimidating project may need to be broken down into several smaller projects. It can help to address the easiest or most familiar aspects first. A highly relational person will be more motivated to tackle an organizing job if it is paired with something social. Fold laundry while chatting on the phone or purge a closet with a partner nearby to help in making decisions. Re-arrange the toys or room furnishings while listening to a podcast. Positive feedback will keep many project managers spurred on with confidence and a sense of value.

RELATED: Tips for Caregivers: Feeling Valued and Competent

The truth is, being in control can be a prominent motivator for organizing activities. Plenty of families appreciate having someone in their household who loves to keep the house tidy. Having a passion to keep the home orderly can be such a blessing to a family, most of the time. But it can be an obsessive need, for some people and at some times. In those cases, the organizer’s behavior can be problematic for the individual or family members.

I personally relate to this. There have been times when tidying things has created a sort of “illusion of control” for me when the rest of my life feels quite chaotic. At times, I have even used organizing to avoid doing other very important things, including stepping up to my responsibilities for Carly’s cares. It is important for me stay on guard for making an orderly home my idol. I may go to organizing things for comfort and quit seeking the the Holy Spirit as my primary Source of peace. In my strengths, the Holy Spirit guides and prompts my activities and priorities. In my weakness, the fixation with decluttering starts to control me.

Every caregiving household will benefit from the contributions of an organizer. If the knack for organizing isn’t particularly strong in your family, seek out a friend, volunteer from church or paid consultant to visit with periodically. A monthly, quarterly or annual consultation with a skilled organizer can breathe fresh life and encouragement into a caregiving situation.

Here’s another thought. If there are young children in your home, keep your eye out for hints of potential. Young siblings eager to help, be creative or solve problems may be little administrators in-the-making. Age shouldn’t limit anyone from sharing ideas about how to serve the family system. You may have a ripe opportunity to cultivate things like self-esteem, problem solving skills, confidence to experiment with ideas and hearts to serve.

TAP YOUR STRENGTHS AS AN ORGANIZER ON THE CAREGIVING TEAM

If being organized energizes you…

  • Seek responsibilities on the caregiving team that optimize your talent and capacity for things like medication management, housekeeping, record filing systems, rotating or re-sorting toys, maintaining therapeutic equipment, periodic closet and pantry purging, etc.
  • Facilitate discussions about routines and schedules that will keep everyone safe, efficient and well cared for
  • Help others find satisfying roles on the caregiving team (e.g., facilitate family/team meetings exploring the interests and strengths of each person)
  • Find a peaceful place in your home to be away from the pressures of the day and organize your thoughts (in cooperation with the needs of others)
  • Look for new opportunities for delegation
  • Express compassion toward those who aren’t as attentive to details as you are
  • Learn to seek Jesus in your priorities and strategies

The Bible offers an abundance of help and encouragement for the person who thirsts for an organized world:

1 Corinthians 3:11
For no one can lay any foundation other than the one we already have—Jesus Christ.

Ephesians 4:16
He makes the whole body fit together perfectly. As each part does its own special work, it helps the other parts grow, so that the whole body is healthy and growing and full of love.

John 14:27
“I am leaving you with a gift—peace of mind and heart. And the peace I give is a gift the world cannot give. So don’t be troubled or afraid.

James 1:2-4
Dear brothers and sisters, when troubles of any kind come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.

Psalm 118:5
In my distress I prayed to the Lord, and the Lord answered me and set me free.

Lord Jesus, you have given me a vision for order where there is disorder. The needs feel overwhelming at times and I don’t always feel personally equipped to meet them. I ask that You strengthen me where I am weak. Reveal Your strength in my weakness too. Raise up others around me and my loved ones to help too. Help my family to see ways where we can give organizational skills room to blossom. Use these gifts and abilities in our midst for godly purposes and to enrich the quality of life and relationships in our family. Amen

Send us your questions and join Lisa LIVE on Facebook April 15th!

Areas Requiring Organization in My Caregiving Home

  • Medications — Carly’s numerous medications and supplements involve medication organizer sleeves (pictured), a drawer in the fridge, a bread box on the kitchen counter, a kitchen drawer, a plastic box and first aid kit for traveling, a zippered cosmetic bag in her backpack, a special pouch in my own purse and a cupboard near her changing table.
  • Toys — We have systems for storing, cleaning, rotating. We have a toy basket in the car and special collection specifically for road trips.
  • Communication & Teaching Tools — Carly uses laminated photos to make activity choices and keep track of chores. Carly’s visual calendar has been a sanity-saver during the Covid pandemic!
  • Routines & Records — The number of checklists in our home is almost laughable. Lists line the inside of cupboard doors, hang on walls and pop up on our smart phones. We have lists of various sorts in the kitchen and primary bathroom: daily sleep log, seizure log, bowel tracking, medication changes, carpet/upholstery cleaning steps, outing idea list, behavior monitoring tool, and troubleshooting ideas for problematic behaviors. A 3-ring binder for all caregiving staff and family includes brief sections on hot topics such as Angelman Syndrome, her Health & Safety Plan, emergency contacts and seizure response information as well as time sheets, mileage forms and worker rights information for support staff.
  • Smartphone Photo Album — Several items are tagged in an album on each caregiver’s phone (e.g., family contact phone numbers, guardianship papers, current medication list, Carly’s state ID card, insurance cards, immunization record and Covid-19 vaccination card. I also keep a couple of videos there showing Carly’s current levels of function. These have been very handy during hospitalizations when I need to show medical staff what they can expect to see when Carly has recovered.
  • iCloud Folders — I’ve started keeping digital copies of important documents stored in a single place for Carly.
  • Incontinence Supplies — Carly’s bedroom and every bathroom in the house includes diapers (two kinds), wipes, disposable mattress pads, and more. We also keep emergency supplies in the car and her backpack.
  • Future Planning — This is an area that can trigger fear and stress, particularly for those who need to feel organized. In our household, there has been an ebb and flow about future planning. We’ve created and updated our wills at least twice in almost three decades of raising children. As the seasons of life unfold, Carly’s functionality matures and our financial situation evolves, preparing for Carly’s future and ours has also shifted and changed. It helps us to stay in touch with our attorney, check in with a financial planner and consult with other advisors along the way. We also work at maintaining open communication in our family about Carly’s future. Those conversations cover a gamut of subjects ranging from guardianship, social security and disability benefits to medical insurance and housing options. We have some dreams and plans but we tend to hold them loosely.


Tell us in the comments what or who helps you and your family stay organized!


Lisa Jamieson

Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Together, the Jamiesons founded Walk Right In Ministries in 2008, a non-profit organization building faith and community with special needs families.

Tips to Help Creative Caregivers Find Their Sweet Spot

This article is part of an ongoing series looking at what puts caregivers in their “sweet spots” when supporting a family member with special needs. Today we’re exploring challenges and opportunities for caregivers whose gift is for creativity.

Creativity is a wonderful gift! It is a particularly valued gift in special needs families, especially when an injection of new ideas and fresh energy is needed. Creative caregivers can be such a tremendous help in a family where there is great need for solving problems, finding new approaches to long-standing challenges, livening up tedious routines, spicing up the food menu, identifying new motivators for therapies, re-designing a home or room for unique functionality, making an old toy fun again and so much more.

I remember a time when our daughter Carly who has Angelman Syndrome was very young and not sleeping at night. She had been wreaking havoc with everything in her bedroom. She was pulling clothes out of dresser drawers, pulling down items in the closet and frequently stripping her bed of its linens. One night we awoke to loud crashing and found her standing at the window wildly banging the blinds and very much at risk of falling through her second story bedroom window at any moment!

The middle of the night was not our best hour for creativity but the situation demanded a fast solution. Within a few minutes, my husband, Larry, had found some scrap wood in the garage and nailed it over the window until we could figure out a more attractive and permanent fix. A few days later, my parents were in town and all four of us very creative adults were gathered in Carly’s room brainstorming everything from bedding solutions to window construction. It was a moment of both grief and deep appreciation. While Larry and I experienced the sorrow of having our lives turned upside down in great detail, we also had those poignant opportunities to connect with my parents whose hearts and minds were deeply invested in helping our family thrive.

We are all made in the image of God who is, by very nature, creative. The Creator of the heavens and the earth, and everything in it, is the Source of all good gifts. If you are someone particularly blessed with the good gift of creativity, let it shine!

Creativity can be a joyful and comforting outlet for the expressive caregiver. It can be a precious escape from pressing challenges and a way to move toward God when someone is yearning to tangibly experience a sense of His presence and power. Scriptures show that songs comforted both the creator and others. For example, King David’s poetic prayers brought him close to God (Psalm 23) and his music soothed the tormented Saul (1 Samuel 16:14-23).

Creativity can ease a caregiver through boredom. Rearranging furniture, re-painting a bedroom, testing a new menu item, thinking of new activities during the long days of illness or the limitations of Covid can be exciting assignments right up the alley of the creative members of your family. It can also be a delight to a loved one who is bored, restless, discouraged or needing some fresh perspective in the grueling routines of their own disabilities.

What fun siblings can have when they share a craft or bake together! I’ll never forget when one of Carly’s sisters helped her choose pantry items and stir them together for a snack one afternoon. We have a treasured picture of Carly wearing an apron, holding a spoon and getting ready to grab a mouthful of her special “trail mix.” It was a challenging experience to keep Carly focused but that few minutes sharing a spontaneous new activity was a precious boost of morale and self-esteem for them both.

Alex helping Carly stir trail mix.

Your intention to bless others with your creative energies is greatly appreciated. But you may not always receive a positive reaction from your stressed and stretched family about your ideas and projects. Unfortunately, family members who are weary or exhausted may feel overwhelmed by new ideas or change.

If you encounter hesitation or pushback for your creative ideas, some perspective is helpful. First, resist taking the reaction of others personally. Have compassion for how ideas, any ideas from anybody, may be making others feel. This will help you to be patient. Consider, for example, that a pragmatic family member may be thinking you have a great idea but it’s going to cost more than what is affordable. Another family member may be thinking about how much energy it will take to implement it. Moms or the primary caregiver, in particular, may be resistant to trying something new if it feels like someone is judging their own major investment of effort. On the other hand, there may simply be concern for protecting the person with special needs from change and all of its associated adjustments.

Don’t give up. Your family needs what you have to offer. They may just need time to absorb your ideas. There will also be times when an idea still needs some refining.

Take your creative visions to God asking Him to clarify for you the timing or ways for sharing your ideas or projects. Ask God to show you what should be pursued and what should be released for another time, or things that need to be dismissed altogether.

Creative minds are often busy minds. Most creative people will have no shortage of ideas or visions for future projects. Your Pinterest boards and hook books may be very full. In fact, you may find yourself vulnerable to having too many “irons in the fire.” You may even find yourself starting to feel pressure to keep up with your own creative juices. You’ll experience greater peace when you develop a lifestyle of being still with Jesus, asking Him to move you toward those specific efforts that hold the greatest potential for Kingdom fruit.

It will also help you to examine what motivates your creative energies. For many, there is a driving need to feel known. There may also be a desire to express something on behalf of others. Feeling understand and pleasing people are powerful influencers. You may appreciate being acknowledged for your talents. It is gratifying to see the beauty or helpfulness of something you’ve created too. Expressiveness can also be a form of release, like popping the cork on a pressure-filled bottle. Unfortunately, that release may involve negative consequences for others. Many will be blessed when you are driven and empowered by the Holy Spirit rather than controlled simply by your own passions or flesh.

If you are not adequately meeting specific needs in your soul — following your unique strengths and calling — you are likely to end up feeling things like anxiety, disappointment, frustration or ongoing restlessness. You might lean into creative endeavors as a way of finding inner healing or escape from pain. But when your projects become an attempt to run from pain or anesthetize things like confusion and doubt, there is vulnerability to replacing a healthy pursuit of God with sin.

Take time to pray. Ask God what is driving your expressiveness. Repent of any sin and ask Jesus to purify your heart. Lean into godly ways of expressing yourself and serving others with your talents. Then enjoy the ripples of God’s handiwork through your gift. Understanding the factors that influence you and learning to follow the promptings of the Holy Spirit will lead to deeper satisfaction and the fulfillment of Kingdom purposes.

When your creativity is a form of worship by way of engaging your gifts to express love to God and others, it will energize you and bring an abundance of incomparable blessings!

TAP YOUR CAREGIVING STRENGTHS BY ENJOYING CREATIVITY EMPOWERED BY THE HOLY SPIRIT

If being creative or expressive energizes you…

  • Seek a role on the caregiving team that optimizes your gifts for things like designing the activity calendar, developing a motivating curriculum for home-based learning, facilitating artistic activities, decorating for birthdays/holidays, overseeing home and bedroom modifications/remodeling/adaptations, leading cooking or baking projects
  • Process your own grief and feelings about the situation artistically (e.g., journal, blog, music, dance, poetry, painting, baking)
  • Initiate conversations and activities that keep atmosphere, perspectives and ideas flowing and fresh (e.g., birthday parties, vacations, staycations)
  • Alternate between tasks and people
  • Plan opportunities for spontaneity and teambuilding
  • Learn to balance personal catharsis with being servant-hearted like Jesus


The Bible offers an abundance of help and encouragement for expressive caregivers:

Ephesians 2:10
For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago.

Exodus 31:1-5
Then the Lord said to Moses, “Look, I have specifically chosen Bezalel son of Uri, grandson of Hur, of the tribe of Judah. I have filled him with the Spirit of God, giving him great wisdom, ability, and expertise in all kinds of crafts.He is a master craftsman, expert in working with gold, silver, and bronze. He is skilled in engraving and mounting gemstones and in carving wood. He is a master at every craft!

Matthew 5:16
In the same way, let your good deeds shine out for all to see, so that everyone will praise your heavenly Father.

1 Timothy 4:14
Do not neglect the spiritual gift you received through the prophecy spoken over you when the elders of the church laid their hands on you.

Proverbs 18:21
The tongue can bring death or life; those who love to talk will reap the consequences.

Colossians 3:10
Put on your new nature, and be renewed as you learn to know your Creator and become like him.

Colossians 3:23
Work willingly at whatever you do, as though you were working for the Lord rather than for people.

Glorious Creator, your faithfulness is my shield! Thank you for breathing life and love into Your children. Your imprint on me is generous with creativity. You call me Your masterpiece. You compare me to a beautiful poem. It’s exciting for me to imagine all the ways You inspire me to express visions, ideas, feelings and dreams. Hold me in Your grip while we enjoy the freedoms of a creative life. Slow down my racing ideas when they control me or have negative consequences for others. Show me how to serve others with my gifts and glorify Your great name. Let the words of my mouth, the meditation of my heart and the work of my hands be pleasing to you, Lord. Cause my gifts to be an instrument of healing to many. Amen

Tell us in the comments how your family experiences the blessings of creativity!


Lisa Jamieson

Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Together, the Jamiesons founded Walk Right In Ministries in 2008, a non-profit organization building faith and community with special needs families. Lisa is the primary contributor on the www.WalkRightIn.org blog sharing practical and spiritual encouragement for parents and other family members caring for children with health and developmental challenges. She also serves on the Key Ministry writing team where she contributes monthly articles for special needs parents and church leaders. Her personal blog www.lisajamieson.org also provides encouragement for people who find themselves in challenging places.


Tips for the Caregiver Who Is Very Independent

Today we’re exploring some challenges and opportunities for caregivers who tend to be independent and are needed in some kind of caregiving role with a loved one. This is the fifth article in a series exploring what puts family caregivers in their “sweet spots” when supporting someone with special needs.

Independent people have wonderful potential to be very effective caregivers. Your strong decision-making abilities and great capacity to take on responsibilities will work to your advantage. You may, at times, feel like the schedules and needs of others are cramping your style. But, if you learn to make healthy adjustment in your attitude and behavior, anger won’t control you and your relationships will be enhanced.

Independent people don’t necessarily desire to have much control or influence over others. Some do. But many do not. Most of all, they don’t want someone else exerting too much influence over their life and circumstances.

If this describes you and you’re needed in a caregiving role, you may feel, at times a bit suffocated by the time and attention others need from you. You’re likely to struggle without adequate pacing of quiet time to spend time thinking thankful thoughts, doing your own thing and making your own decisions. Even if you genuinely desire to be of help, you may find yourself feeling robbed of freedoms, spontaneity and independent decision-making.

Don’t underestimate the value of well-placed breaks. Long periods without some amount of time to yourself is likely to put a strain on you. Your situation may not afford long or frequent breaks yet pauses from being responsible for others will go a long way toward keeping you refreshed. Work with family members and others who can contribute to sharing the cares so that you can develop an adequate rhythm of respite. Just knowing when your next break is coming is of help. A getaway on the calendar, simply a routine walk alone around the neighborhood or even time spent working in another job you enjoy will help you persevere.

Being a very independent person also means that you are self-motivated. Among your many strengths is the ability to gather and analyze the situation, come to conclusions and then respond according to what is needed. If you do happen to find yourself struggling with motivation, it will help to make sure you have sufficient and accurate information so you can draw your own conclusions and be confident in how you’ll respond. Ambiguity or lack of clear expectations can result in frustration and hesitation for someone who is independent. This can look like procrastination or stubbornness to others but will often have a great deal to do with your self-confidence.

All of us have strengths and weaknesses. It can be very helpful to recognize your vulnerabilities and learn how re-aligning with the Holy Spirit will move you back toward your strengths.

Your strong will can be both a strength and a weakness. For example, you will probably have a great desire to follow rules and procedures. You’re attentive to details and can be relied on to implement a quality care plan without a lot of supervision. In fact, you’re probably a good leader and very helpful in training new caregivers about the details and nuances in the realm of caregiving. However, you may have high expectations that others will learn quickly and implement those details perfectly. You may have no particular interest in controlling other people but you do want them to follow the rules and procedures put in place just as would be expected of everyone else on the team. You may not be aware that others feel a great deal of pressure to live up to your expectations because your expectations of yourself are even higher.

If you are experiencing a great deal of stress and anxiety, it will probably help you to learn that the lines of “right” and “wrong” may not be as black and white as they seem. Things that are unimportant to you or very important to you may be on a very different priority list for someone else. You will find your life and relationships to be richer when you work alongside others in collaboration rather than by exerting your own ideas and conclusions.

When working in areas that are familiar to you, you’ll be very efficient at those responsibilities. In fact, you may become so focused on working efficiently that you may sometimes forget to consider the thoughts and feelings of others. Being aware of this strong drive will help you to lean into the Holy Spirit for help in balancing efficiency with sensitivity.

If you are an independent caregiver, you will also find it helpful to be allowed to work at your own pace and in one steady shift that allows you to be efficient. Feeling pressured about external deadlines or the personal timelines of other people may trigger anxiety or frustration for you. Recognizing this can be very helpful since knowing what is triggering your reactions provides clues about how to pray for God’s strength as well as how to communicate clearly with others about what will help you stay in your strengths.

Be aware that people may perceive you as controlling even though you actually have little or no interest in holding power over others. It may be that your inflexibility, fear of failure and procrastination are impacting others in a way that makes them feel they’ve lost control. Even a few minutes alone every day can bring out your kinder and more flexible side. Cooperate with your team to give each other breaks for naps, hobbies, watching a movie, playing on a computer, going to work outside of the home or even doing nothing. These independent times will be powerful in rejuvenating you and making you much sweeter to be around.

It may surprise you to know that very independent people are often quite family oriented. You may have difficulty expressing your tender feelings around those you are closest to. In fact, your indirect behavior and sarcasm may be confusing to others. This can be especially true in families where there is a non-verbal person with disabilities. Your family may have become quite intuitive in their interactions with one another. However, body language, anger, tone of voice and seemingly critical words can often be misunderstood. It would be very helpful for your family to regularly “clear the air” with family meetings and conversations that foster clarity, repentance and forgiveness.

Things that tend to trigger stress and anger for you probably involve change, taking on responsibilities in areas where you feel unfamiliar or ill-equipped, feeling others don’t respect the things that are important to you, and frustration when others insist on the importance of things that don’t seem very important to you.

If you feel your competence is being questioned you may feel defensive, hurt or angry. It can be very helpful to ask God to show you what is real and what is perceived. More often than not, your concerns about what others think about your efforts are more imagined than real. While others may not tell you often or well enough, you are probably more valued than you realize. Your uncertainty about what others think about the quality of your work may be coming primarily from your own high expectations of yourself.

You’re likely challenged in the area of anger management. You may not even know that anger is problem for you. But members of your family and those who work closely with you probably do know. You may deny your angry feelings (or simply not recognize them as anger) unless or until you are intensely angry.

Caregivers who learn to deal constructively with their anger will find themselves much better able to cope with the tough issues of life and much more satisfied in their relationships. Anger does need to be expressed. But it needs to be expressed in healthy, godly ways.

The Holy Spirit promises to help us when we’re feeling weak. We are also promised to have our consciences wiped clean as we seek Jesus’ presence and trust Him (Hebrews 10:22).

As an independent person who is called to a role in supporting a loved one with special needs, you will find your sweet spot in that role by learning to deal with your anger constructively, give yourself and others the right to be imperfect, avoid holding grudges, continually forgive past mistakes, ensure for yourself some quiet time alone every day, develop routines that allow for you to be productive, keep focused on the positive side of life and make a point of expressing your tender feelings.

TAP YOUR CAREGIVING STRENGTHS BY DEVELOPING A COMPASSIONATE HEART

If you’re energized by being independent

  • Seek a role on the caregiving team that prioritizes responsibilities in areas where you can control your own circumstances, time and decisions
  • Work together with loved ones to clearly define each person’s responsibilities in running an effective household
  • Develop a servant’s heart in your responsibilities
  • Be faithful to your own commitments without competing with others
  • Learn to show interest in what matters to others
  • Learn to be attentive and respectful to the needs and rights of others
  • Communicate daily with loved ones to keep from overstepping their boundaries
  • Create a safe space in your home where you can spend some time alone every day
  • Determine areas in your routines where you can take back some control
  • Learn to yield to Jesus’ authority first

The Bible offers an abundance of help and hope for people who are independent. If any of these verses seems especially encouraging to you, you might consider committing it to memory.

Philippians 4:19
And this same God who takes care of me will supply all your needs from his glorious riches, which have been given to us in Christ Jesus.

Romans 12:1b-2
This is truly the way to worship him. Don’t copy the behavior and customs of this world, but let God transform you into a new person by changing the way you think. Then you will learn to know God’s will for you, which is good and pleasing and perfect.

Ephesians 4:26
“Don’t sin by letting anger control you.” Don’t let the sun go down while you are still angry.

Acts 3:19
Now repent of your sins and turn to God, so that your sins may be wiped away. 20 Then times of refreshment will come from the presence of the Lord, and he will again send you Jesus, your appointed Messiah.

Romans 2:4
Don’t you see how wonderfully kind, tolerant, and patient God is with you? Does this mean nothing to you? Can’t you see that his kindness is intended to turn you from your sin?

Romans 12:10
Love each other with genuine affection, and take delight in honoring each other.

Lord Jesus, thank you for loving me just as I am. You are so wonderfully kind to me! You know full well how hard I work and how much I enjoy my rest. You have equipped me to be highly capable and to serve my loved ones loyally. You understand the pressures I feel too. I need your grace, strength and hope to carry me from one day to the next. Jesus, forgive me allowing ingratitude, impatience, pride and anger to control me. Praise God, I am not a slave to sin! I am free to trust your easy yoke and light burden. Teach me, more and more, how to love tenderly, serve faithfully and trust you fully. Help me to experience my deepest rest and satisfaction with You. Amen

Tell us in the comments what works for you and your family!


Lisa Jamieson

Lisa Jamieson is a caregiver consultant, pastoral counsellor and author of popular books and Bible studies including Finding Glory in the Thorns and Jesus, Let’s Talk. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Together, the Jamiesons founded Walk Right In Ministries in 2008, a non-profit organization building faith and community with special needs families. Lisa is the primary contributor on the www.WalkRightIn.org blog sharing practical and spiritual encouragement for parents and other family members caring for children with health and developmental challenges. She also serves on the Key Ministry writing team where she contributes monthly articles for special needs parents and church leaders. Her personal blog www.lisajamieson.org also provides encouragement for people who find themselves in challenging places.

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 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.