Category: Perseverance

BOOSTING FAMILY MORALE SERIES (Part 3): Seven Ways to Energize & Refresh Your Special Needs Family

This is the final installment in a three-part BOOSTING FAMILY MORALE SERIES for special needs families. I hope you’ll have a chance to go back and readPart 1 and Part 2.

I also discussed this subject of Managing Morale in special needs families during a 60-minute interview with Stephen “Doc” Hunsley MD, founder of SOAR Special Needs. You can watch that episode of “Talk with Doc” here.

You can read all kinds of books and blog articles about boosting morale. You could invest a lot of time in trial-and-error mode, testing ideas but feeling a mounting pressure or disappointment when some things don’t work as well as you hoped.

I want to help you skip past as much of that exertion and discouragement as possible. As I’ve said several times in this series, responding to the real root of what is undermining morale will give your family the most positive traction much more quickly and effectively.

So, as you prayerfully ponder these seven ways to energize and refresh your special needs family, I want to ask you to keep the unique and individualized needs of your family at the front of your mind. Home in on an area below that most closely addresses the roots of anxiety or discouragement. Here are some examples:

If someone is struggling with all the things out of their control, it should help to review the scriptures and tips under “Anchor Your Worth and Competence in Christ.”

If someone is struggling mentally, their mood is quite likely to begin shifting when they “Saturate Your Mind with Truth.”

If someone is feeling isolation fatigue, they will benefit from a strategic look at “Connect in Community.”

For those who tend to be more emotionally oriented, look closely at “Change Your Scenery.”

If things just don’t feel fair, read the noted scriptures carefully under “Remember that God is Just.”

If you’re feeling stuck or trapped, there is potential for great refreshment within the whole family when you “Take a Step of Faith” together!

If you’re simply exhausted, you’ll find a creative and collaborative effort to “Rest” pays off generously.

Now let’s really dig in to where the rubber hits the road!

Saturate Your Mind with Truth

PROVERBS 23:7 | 2 CORINTHIANS 10:5 | PHILLIPIANS 4:8

This is critical area of opportunity for people who spend a lot of time thinking or who tend to be deep thinkers. Renewing your mind with truth is a powerful mood shifter when you are vulnerable to things like fear, doubt, confusion, shame, guilt, discouragement and burnout. The scriptures (especially those listed above) will help keep your mind focused on God’s Kingdom meaning and purpose in things like suffering and waiting. When thoughts are spiraling, God’s Word is a calming anchor.

Connect in Community

HEBREWS 10:25 | 2 CORINTHIANS 1:3-5 | ROMANS 3:10,23 | JAMES 5:16

This one is BIG! No matter who we are, we all need relationships. But we don’t all need them to the same degree. Be careful about lumping people into categories like “introverts” and “extroverts.” Those labels can mislead. It is usually more helpful to think specifically about the kinds of connections different people need. Do you enjoy casual connections, want mostly deeper relationships — or both? (I’ll elaborate on these below.) It’s also important to factor in what is needed compared to what is actually expressed. For example, some people actually have a great need for relationships but don’t really show it. They may rarely initiate connections. And since they don’t express their need, people get confused or pull away.

There are very generally two kinds of connections and we don’t all need both.

  • Casual Connections — If someone in your household is missing being out and about during quarantine or needs to feel connected in the broader community, they could be the best person to do the grocery shopping. Encourage them to turn on LIVE radio and TV shows. Invite them to sit with a group around a socially distanced bonfire or play virtual games. It has helped our daughter Carly to be part of Zoom dance parties. And she’s been learning to throw dice while playing Zoom Farkle with her friend and cousins.
  • Deep Relationships — Some people need relationships where they can connect on a more intimate or emotional level. These are the kinds of relationships where there is an exchange of love, affection and appreciation. Whether it involves several or just a few people, these are the people in your household who look to close friends, family members, their church fellowship and a counsellor for a warm sense of belonging. When something like caregiving or the quarantine limits these deeper connections, it’s absolutely essential to find ways of adapting and accommodating the need. People with higher needs in this area may find it helpful to snuggle with a pet, cuddle with loved one, get creative about how to have a date, go for a walk holding hands with your partner, watch shows about relationships or read character-driven stories. They will want to play the kinds of games that rely on conversation. It should not be surprising that this person will run from a game of Chess but (all irony intended) thoroughly enjoy the game Pandemic! This type of person may even enjoy hanging out with a friend on Zoom while they both do a puzzle or craft and sip a cold beverage. You may want to give these family members permission to sit out on the driveway for social distancing conversations or spend more time on the phone.  

Change Your Scenery

HEBREWS 11:8 | ACTS 22:7 | PSALM 40:2

This is a helpful tip for shifting anyone’s mood but especially people who tend to be more creative or connected to their emotions. Those who “feel everything” or who feel things more intensely will benefit greatly from moving their body or moving the furniture! Back in April, we rearranged our family room and we love it. A couple weeks later, we we changed around our deck furniture and added new plants. All of that was so simple and has been like a breath of fresh air that keeps paying daily dividends.

When you need to boost mom’s morale, let her go take a shower. Some dads love and teenagers love to mow the lawn to get some alone time or listen to their music. It could be the change of atmosphere that is lifting their spirits. Try using paper plates, eating outside or sitting at a different table. You can invite your most creative child to build a fancy table setting. The point is to switch up the routine. Light a candle, read a different kind of book (choose a different genre), change your clothes, cut your hair, buy new sheets for your bed or bring some flowers in from outside.

Anchor Your Worth & Competence In Christ

ISAIAH 54:10 | PHILLIPIANS 4:13 | 2 CORINTHIANS 3:5

It is not at all unusual for caregivers and parents to struggle with feeling like they are doing enough for their loved one with special needs. They lament not having bandwidth to balance the needs of multiple children. Children perceive pressure to measure up too. We’re all tempted to measure our own worth in this world by what we contribute or some privately created standard of “quality.” Ultimately, our confidence can only grow from having our identity firmly rooted in Christ not in what role we play in our family, church, workplace or community. Our value to God isn’t based in our efforts. We’re saved by our faith alone. If you struggle with feeling like you don’t measure up or worry about what others think of you, remember that perceptions can be far from reality.

Remember God is Just

ACTS 17:31 | 1 JOHN 1:9 | PSALM 58:10-11

God’s word speaks loudly about His promise of justice. Ask God to reassure you by showing you meaning and purpose in your challenges as well as your future hope. If someone is really struggling in this area, a good devotional on biblical justice or the sovereignty of God is likely to be very encouraging.

Take A Step in Faith

PROVERBS 3:5-6 | 1 CORINTHIANS 2:5 | 2 CORINTHIANS 5:7 | EPHESIANS 2:10

Do you want to see your encouragement to grow, enthusiasm about life to be restored in your family or faith to blossom in someone you love? Start with one simple response to a sense of godly prompting.

Pray together asking God to show you one way He wants you to take action, then walk it out as a family. Few things create as much excitement as seeing God reveal his presence, power and goodness in response to our faith and obedience. Our circumstances are complicated and when we look too far ahead, we get overwhelmed.

Our special needs families will find encouragement in taking one step at a time while holding plans loosely and anticipating the surprises of God’s love.

Rest

EXODUS 14:14 | EPHESIANS 3:20-21

Oh, how often morale in our family wanes because we are plain bone tired and simply don’t listen to our body. I think special needs families can run on fumes so often they start to forget how exhausted they are. Overwhelm starts to feel normal.

We underestimate the transformative effects of a power nap or a shower. Or we resist resting because we’re afraid that once we stop, we’ll never be able to go again. We see complex needs and circumstances in front of us and assume full responsibility for fixing problems, finding cures, optimizing developmental potential and finding comfort for pain while also doing all the same things the neighbors do like maintaining the house and cars.

May I suggest, quit trying harder and just draw nearer to God. Give yourself a “time out” with Jesus. It sounds simplistic and super spiritual. But what if God really does love your family even more than you do? What if he really is sovereign and trustworthy? What if “taking a Sabbath rest” was really an option? Maybe it won’t be a whole day or look like the kind of rest your neighbor gets, but your family needs to cooperate with each other to get some breaks.

Take some deep breaths. It could literally help to go blow bubbles with the kids. Assign some things to a routine (e.g., Taco Tuesday, Friday Pizza night, Saturday take-out). Set a schedule so rest can be anticipated. Burdens are eased by knowing when a break is coming, even if it’s a short one or a couple of weeks away. Collaborate about decisions as much as possible.

You’ll probably have to ask for help more often. Open up your “closed system.” It is quite possible that step of faith God is whispering to you is, “ask for help, My child.” You don’t need to feel guilty about teaching siblings ways of helping either. Teamwork is not just about disability but about being part of a family. Don’t abuse anyone but learn to cooperate and complement each other. Don’t rob God of opportunity to create blessing through your community.

Do you hear in all of this an invitation to experience freedom?
I sure hope so!

The process of learning about each other and how to love each other better is the grand adventure of life, after all. Be patient with yourselves and enjoy the freedom you have to make new discoveries. No one needs to make comparisons or shame themselves for not being “that parent” who does all the fanciest, funnest things either. When it comes to building morale, a little goes a long way — and it goes a long way fast — when we hit the root needs in a targeted way.

These are powerful tools you can give your children, friends. As parents cooperate in marriage and learn to lead their dynamic family in ways that celebrate individuality, they model healthy and godly relationships. This is the essence of self-care that simultaneously complements how we care for others. Our children will thrive in future life and relationships when they learn this kind of self-care and servant-hearted relationship with others.

LISA JAMIESON is a licensed pastoral counsellor, certified Christian temperament therapist and caregiver coach. She is co-founder of Walk Right In Ministries where she serves as a special needs family advocate. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Her books and Bible studies include “Finding Glory in the Thorns” and the picture book “Jesus, Let’s Talk.”

BOOSTING FAMILY MORALE SERIES (Part 2): Developing A Complementary System

In Part 1 of this series, we looked at five ways to “keep the Light on” in special needs families. We explored things that drain energy and tend to trigger discouragement or conflict in a special needs household. In that article, we looked at spiritual fundamentals for a robust and positive family system. I hope you’ll have a chance to go back and read BOOSTING FAMILY MORALE (Part 1 of 2): Five Ways to Keep the Light On for background that leads into this second part in the series.

I also discussed this subject of Managing Morale in special needs families during a 60-minute interview with Stephen “Doc” Hunsley MD, founder of SOAR Special Needs. You can watch that episode of “Talk with Doc” here.

Now let’s dig in to Part 2 of the series.

Do you know how incredibly unique and valuable you are? God’s imprint on each of us is vastly different. And you are quite a masterpiece, according to your Creator! Here’s how David tells it:

Psalm 139:16-18
You made the delicate, inner parts of my body and knit me together in my mother’s womb.
Thank you for making me so wonderfully complex!
Your workmanship is marvelous — how well I know it.
You watched me as I was being formed in utter seclusion, as I was woven together in the dark of the womb.

We are not just delicately woven in our physical body. We are also complex in mind and spirit. The COVID-19 quarantine has made many of us more aware of needs like these:

  • Longing for connection with other people
  • Craving time alone to recharge
  • Missing a fuller schedule
  • Wishing we could sleep more or read another book
  • Thinking deeply and spending a lot of time doing it
  • Feeling deeply (but not always expressing it well)
  • Dissatisfied until we get stuff checked off our to-do list
  • Wanting to give or receive expressions of affection, attention, appreciation, affirmation

In fact, I’ve been embarrassed and ashamed by how needy and self-centered I am at times, especially during this COVID season! In some ways though, this quarantine-induced understanding and awareness could prove very helpful. It reveals areas where we tend to be vulnerable. It can give us clues about what we need to do in order to stay healthy and satisfied. For example, isolation intensifies anxiety for someone who needs a lot of connection with people. If that person stays attentive to their need for certain kinds of connection and finds healthy, satisfying ways to do it, they will stay energized and maintain a more positive outlook.

Darkening moods and interpersonal conflict are typically a response to inadequately met needs. Whatever your unique needs and degrees of expressing them are, that is where you’ll find powerful clues about what keeps your batteries charged or what will re-energize you and build positive momentum within your mind, body and spirit. The same is true for each person in your home — uniquely so.

We all have strengths, weaknesses and vulnerabilities to sin. Each of us is a work in progress. We are not perfect humans but we hope to be generally be headed in the direction of personal growth. Thanks be to God, there is no condemnation for those who belong to Jesus. But there certainly is opportunity and responsibility to grow as a disciple and representative of the Kingdom. Learning how to be attentive to our needs and other’s (by staying in tune with the Holy Spirit) and asking God to help us complement each other’s uniqueness (with a servant’s heart) makes us more like Jesus. It also builds morale in our homes.

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.

There are seven areas of opportunity to boost energy levels, encouragement and refreshment in your special needs family.

I’ll be writing in more detail about each of these areas in Part 3 of this series.

In the meantime, it’s important to know that you’ll get the most efficient and powerful morale boost by focusing your attention in one of these areas for each person. Pray about which area is most likely to address the true root need they have. For example, if you’ve noticed that your husband’s spirits have become low, consider what his root need may be then explore ways to cooperate with each other to meet mutual needs in a balanced way. Sometimes that means sacrificially taking turns. Ideally, this is a very cooperative process.

The other day at my house, we encountered an opportunity just like this. There was growing friction between me and my husband, Larry. The tension was getting expressed by one of us (who I won’t implicate here) as impatience and a critical tone. The other (who I won’t throw under the bus) was retreating from communication and resisting expressions of affection.

We could argue all day long about who started it and who was “right.” But the truth is, each of us had some core needs that weren’t getting adequately met. The quarantine was wreaking havoc that week. We were in a valley needing the ebb to meet the flow in a more positive way. By re-examining the list below, we recognized an opportunity to collaborate that would re-energize and encourage both of us. Larry watched a TV show with Carly that didn’t interest me while I gave myself a pedicure. Ninety minutes later, the momentum had already begun to shift to a more positive tone. In this case, he sacrificed more because he was on duty with Carly and had faced a couple of interruptions. But later that night, I gave him a neck and shoulder massage.

Balance. Compromise. Cooperation. Teamwork.

Morale is highest when we are a complementary system!

LISA JAMIESON is a licensed pastoral counsellor, certified Christian temperament therapist and caregiver coach. She is co-founder of Walk Right In Ministries where she serves as a special needs family advocate. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Her books and Bible studies include “Finding Glory in the Thorns” and the picture book “Jesus, Let’s Talk.”

BOOSTING FAMILY MORALE SERIES (Part 1): Five Ways to Keep the Light On

Families affected by special needs are well acquainted with the ebb and flow of discouragement, conflict and fatigue. Quarantine and current events are adding further stress to our family dynamics, including mental and emotional health. Just like our immune systems needs a boost of vitamin C when illness threatens, we need both proactive and responsive help for threats to our family’s morale.

In this series, we’re exploring targeted ways to bring a speedy delivery of fun, energy and hope to your doorstep! Our hope is to show the way to experience an extra strength, extended-release dose of spiritual and practical encouragement.

First off, I just want to acknowledge that families impacted by disability and other special needs can find life intense and rather complicated. Thankfully, there is a richness to life and relationships that comes through the way God has uniquely woven us into our families as well. Still, we encounter many days and situations that feel very heavy. We never know when a crisis may arise and plans are regularly thwarted. Each person in the family has times when their mood darkens. And when they do, one person’s mood can ripple through the entire household.

What are the things that seem to trigger heaviness in your heart or home?

Perhaps you’ll relate to some of these examples:
The repetitive and tedious nature of daily cares (e.g., bowel regimen, housekeeping issues created by disability such as laundry)
Seeing our child self harm
Medical crisis
Comparison to others
Feelings of isolation or being invisible
Reminders of lost dreams
Battles for a better IEP or other rights (e.g., health insurance)
Seeing areas where our child is falling behind
Feeling inadequate as a caregiver or parent
Feeling trapped, stuck or hopeless
Disappointment from a sibling who can’t play or demands attention
Resentment of a spouse who gets to go to work and escape
Guilt within a spouse who needs to work and isn’t able to help more at home
Disconnection from spouse, community or others
Pressure to make decisions
Grieving (a diagnosis or lack of diagnosis)

People use various words to describe the dark moods or conflict that creep in on the heels of such triggers.

anger, hurt feelings, defensiveness or hyper-sensitivity, discouragement/hopelessness, anxiety, grief, depression, exhaustion, lack of motivation, loneliness

Families who tend to be resilient within the ups and downs of the household atmosphere are those who are proactive in caring for each other and also responsive to clues that stress is mounting. They learn to be attentive to each other, communicate often and recognize areas of vulnerability to shifting moods. They make an effort to understand each other’s most typical triggers and cooperate with each other in making sure root needs get met — before the valley of the shadow looms large.

It’s a process and no family is going to handle the ebbs and flows perfectly. But we can learn to find a balanced family system that softens the shadows and reduces their frequency.

Proverbs 27:12
A prudent person foresees danger and takes precautions.
The simpleton goes blindly on and suffers the consequences.

5 Ways to Keep the Light On

John 8:12
When Jesus spoke again to the people, he said, “I am the light of the world.
Whoever follows me will never walk in darkness, but will have the light of life.”

What can help keep the Light on within your special needs family?

  1. Pay Attention to Where Your Identity Rests
    If you are someone who loves and follows Jesus, you are a child of God (John 1:12-13). That is who you are first and that is where your identity is anchored. Disability doesn’t define you. The beginning and end of your calling and your empowerment comes from your Creator. You are part of a special needs family but that is secondary to being part of God’s family.

    Children who grow up with solid reassurance about where they stand in that broader spiritual family will have their most powerful tool for thriving through their teens and early adulthood. As each person matures, wrestles and lives through ages and seasons of self-discovery, there is delightful freedom in knowing that their core place of “home” rests safely with God. Within that anchoring identity, each person has God’s permission and encouragement to explore their roles, opportunities and contributions in the big wide world. Resist giving disability, complex medical needs or mental health difficulties all the power over the tone of the household or mindset of the family system. You are more — individually and together — than any diagnosis.
  2. Maintain Safe, Open & Positive Communication
    Make your home and family a safe space for ongoing and proactive conversations about what is creating dissatisfaction, restlessness or grief. Resist the spirit of criticism (1 Corinthians 13:1 and Philippians 4:8). Most special needs families also benefit by seeking counseling.

  3. Give & Receive Forgiveness
    Do some regular self-examination. Not a single one of us is perfect (Romans 3:10 & Romans 3:23). Confess weakness, repent of sins and become more aware of God’s unique imprint on your soul. God will help you see yourself realistically and as His masterpiece (Psalm 139:23-24) and he promises to bring a refreshing into your life when you humble yourself and repent (Acts 3:19-20, James 5:16).

  4. Appreciate that Each and Every Individual is God’s Work of Art
    God masterfully designed every person in your family with unique needs, ways of thinking, ways of feeling, ways of relating to others, passions, talents and spiritual gifts (Ephesians 2:10). Prayerfully study your family members to develop understanding, appreciation, compassion and respect for their precious value. Aim to identify ways you can live together that are complementary and show a balanced, servant-hearted regard for each person in the family.

  5. Rest On the One Constant in Your Chaos—God
    God’s character and promises never to change. He remainsthe same yesterday, today and forever (Hebrews 13:8). His nearness, faithfulness, sufficiency and perspective are completely dependable for us.

In Part 2 we’ll be exploring ways to cooperate with each other to meet mutual needs in a balanced and complementary way. We each have our own strengths, weaknesses and vulnerabilities. Learning how to be attentive to each person’s needs and honor each other’s uniqueness builds morale in our homes. Read BOOSTING FAMILY MORALE SERIES (Part 2): Developing a Complementary System.

Then in Part 3, we will look at seven practical and biblical ways to get energized and refreshed. Read BOOSTING FAMILY MORALE SERIES (Part 3): Seven Ways to Energize & Refresh Your Special Needs Family.

I discussed this subject of Managing Morale in special needs families during a 60-minute interview with Stephen “Doc” Hunsley MD, founder of SOAR Special Needs. You can watch that episode of “Talk with Doc” here.

LISA JAMIESON is a licensed pastoral counsellor, certified Christian temperament therapist and caregiver coach. She is co-founder of Walk Right In Ministries where she serves as a special needs family advocate. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Her books and Bible studies include “Finding Glory in the Thorns” and the picture book “Jesus, Let’s Talk.”

Sometimes I Beg, “Make It Stop!”

How bad is the morale at your house these days? If people are going a little nutty behind your front door, then they are much like the folks here at my house. We’re restless from quarantine. We’re overwhelmed by news and social media. Like most of you, we’re trying to learn new things and make the best of circumstances. But it sure can be exhausting.

My own heart cries out for relief. But this season has been especially hard on our daughter Carly. She is 22 years old with Angelman Syndrome. The last few months have brought her great confusion, boredom, loneliness and frustration. Bless her heart, she is learning to adapt. But she continues to have episodes of negative behavior and her sleep has been more irregular than usual. That means mom, dad and respite staff are tired too and frequently finding ourselves at the end of a rope.

Trying to manage Carly’s anxiety and keep her caregivers content can feel like another full-time job for me. I’ll admit to great impatience in this area because I’m a mom who needs a lot of independence and solitude. I believe I may even be inclined to take on more projects than I should sometimes because they feel like justifiable excuses to escape the weight of certain responsibilities. I confess to sometimes avoiding my role as caregiver and consistently pulling my weight in managing morale at my house. Because I have a servant-hearted husband, I can inadvertently take advantage.

Of course, each of us has our own strengths and weaknesses. So it’s always a good idea to shape roles and tag-team responsibilities according to what best fits each person’s strengths. Still, we have to pay close attention to honoring each other’s needs and energy levels with partnership and grace. Larry and I work at being a complement to each other. But when tensions start to rise, we have to go back to the basics — understanding and cooperating with the unique needs that each person has in this caregiving family.

The road to relief and carrying lighter burdens starts with having a clear and accurate diagnosis of our own unique needs. Each of us needs to recognize, “What is the root of my longing?”

It’s tempting to blame the quarantine for everything. No doubt, we all want it to be over! Yet, in truth, it’s not necessarily that we’re longing so much for the end of quarantine but that we have deep inner hungers for things like:

  • More freedom, control or space
  • More “real” connections to people
  • More interesting things to do
  • Times for quiet and times rich with activity

With or without a quarantine, Carly needs these kinds of things in varying degrees. We all do. Now, the isolation and limitations have heightened our existing sensitivities. This season can actually be an opportunity to become more self aware — as well as more aware of the core needs of others.

Proverbs 13:12
Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.

At our house, we are regularly seeking ways to help each other tend to their soul’s longings. It requires more creativity but we are discovering that it is often possible to find reasonably satisfying ways of feeding our soul cravings despite the limitations.

Moms and dads can help kids develop awareness of their true longings too. What a powerful life skill we give them when we do this! These two things lie at the heart of effective self care:

  • Learn to take the longings of your soul to Jesus and experience His presence, power and goodness.
  • Identify healthy ways to meet your deepest needs so you don’t start seeking harmful/sinful ways of “medicating” those longings.

My husband and I keep learning how helpful it is to study our family and learn what uniquely energizes each of us. Here are some examples that God has opened our eyes to see:

  • Carly calms considerably when she can crawl into her dad’s lap and listen to a specific music playlist he created for her.
  • Carly likes to be busy with frequently changing activities so we’re finding ways to keep her schedule satisfying and we’ve updated her visual calendar to show new images we didn’t feature on her calendar prior to quarantine (Zoom meetings, Farkle games, Dance parties, car wash, etc.)
  • Larry feels more valued and confident when we speak words of appreciation and affection into him.
  • I recharge when I have permission and opportunity to retreat by myself to read a book, take a bath or watch tv for about 90 minutes.
  • Our sense of isolation or tendencies to feel invisible are best fought through serving others, connecting with friends and family on Zoom or FaceTime, playing games together (even virtually with friends), going for a walk or weeding the garden while on the phone with a friend, worshipping via livestream with our church family.
  • Friction between Larry and I is often defused by creating adequate opportunities for intimacy.

Friends, our families are well led when mom and dad are well fed. When we work together in creating an environment that adequately complements each person’s deepest needs, we all thrive.

Be encouraged. It’s a process. My family is not perfect but we’re making progress. More and more often, I feel like the wind is at my back spurring us forward rather than blowing hard on my face and chest. Instead of feeling heartsick from leaning into the pressures of quarantine, heavy news and caregiving, I’m becoming a more intentional and creative caregiver. Honestly, this season is finally making me more reliant on Jesus than on myself.

This season is giving me a more realistic view of my limitations, boundaries, needs and dreams while growing me into the person I’ve always wanted to be — someone who is more trusting of Jesus’ power and concern for us.

2 Corinthians 3:16-18
But whenever someone turns to the Lord, the veil is taken away. For the Lord is the Spirit, and wherever the Spirit of the Lord is, there is freedom. So all of us who have had that veil removed can see and reflect the glory of the Lord. And the Lord—who is the Spirit—makes us more and more like him as we are changed into his glorious image.

LISA JAMIESON is a special needs family advocate and co-founder of Walk Right In Ministries where she serves as a caregiver coach and licensed pastoral counsellor. Lisa and her husband, Larry, live in Minnesota with the youngest of their three grown daughters, Carly, who has Angelman Syndrome. Lisa’s books and Bible studies include “Finding Glory in the Thorns” and the picture book “Jesus, Let’s Talk.”

Best Practices of Refreshed Special Needs Moms

I like to feel rested. My most satisfying days end with projects checked off my list and at least 7 hours of sleep. (And, hopefully, those are consecutive, uninterrupted hours.) But most days come and go with a lot of caregiving, emails with our daughter’s case manager, disability-related paperwork, medications organized, and the desperate need for a long winter’s nap! I know you relate.

The truth is, most people don’t get enough rest or true refreshment in their lives. Special-needs parents get even less. Lots less. I’m a special-needs mom to a young adult woman with significant needs and dependencies, so I’m going to share from a mom’s perspective. Dads are right here too.

Stick with me for a minute while I play out a metaphor.

Source: 123rf

Imagine you’re a hiker with a bottle of water and 2 hours of walking, climbing and extraordinary views ahead of you. It’s hot but bearable. No specific obstacles are anticipated. Then you suddenly turn your ankle on a loose stone and go down. At first, you think it’s simple a sprain. You expect to rest a moment and then walk it off. But your ankle swells quickly and begins to throb mightily. After a painful weight-bearing test, you get nervous about whether you can make the walk back to your car safely on your own. Sensing you have only four more hours of daylight, you gather your wits and will yourself to walk. Unfortunately, frequent breaks to regroup keep your progress painstakingly slow and your water supply is running low. You wonder why you didn’t save more, in case your adventure grew prolonged. You’re weary with regrets. Fear sets in as sunset comes and goes without another hiker in sight. The parking lot is still far off. Your worries of rattle snakes, hairy spiders and eerie bats is growing and you’re feeling hauntingly alone. You drop back to the ground and realize you’ve gotten lost in the dark. To make matters worse, your water straw is now sucking air. That reservoir of refreshment seemed so much bigger a few hours ago than it does now!

Are you with me? That “hike” I described sounds like our journey through special needs parenting, doesn’t it? We’re walking life’s road with great awareness that there is beauty and excitement in the adventure but it comes with frequent setbacks that include danger, fear, confusion, overwhelm, and a host of other surprises. If you’re like me, you need ways to recharge your physical batteries, replenish your emotional reserves, and “rehydrate” your soul.

Finding time to rest and engage in effective, personalized refreshment strategies is not easy.

I find it’s helpful to start by asking myself a hard question. It’s the root question, really.

Do I trust God enough to prioritize my rest? Or do I think I need to press on hard because “if I don’t do it, who will” or “what awful or inferior thing might happen if I don’t get this or that done for my special needs child?” Friends, this kind of thinking reflects our pride and our lack of trust in God to be our ultimate Supply. After all, this is the same God who commanded the Israelites to rest on the seventh day and just trust Him. God provided exactly what they needed for food each day, but only enough for one day at a time. Anything extra spoiled overnight so they needed to trust Him for each new day. And on the seventh day, there was an exception to His pattern. He preserved a second day’s supply of food (which they prepared the day before) and gave them the opportunity for rest. God’s people honored Him best on that day by trusting Him for every necessary provision (even their very freedom) and reflecting on His faithfulness.

The caregiver in me is nourished by several things as I try to make rest a regular part of my diet. It has also helped me to recognize that I may not be able to indulge in long, slow swallows of refreshment very often but I won’t stay healthy or safe without adequate pauses for steady “sips of hydration.” It’s taken time to learn what works for me — what needs to be on my list and how I need to pace my rations. If you don’t yet know what works for you, let me encourage you to prayerfully ponder it and do some experimenting.

When I observe special needs moms who make self-care a priority, I’m always empowered with ideas and renewed commitment. Perhaps this list might confirm your own approaches or inspire some new ways for you to stay equipped for the trail ahead.

Ways to Stay Equipped for the Trail Ahead

Take 30-minute power naps. Now don’t roll your eyes. Impossible as it seems, this may be the single most helpful thing you can do for yourself and your family. That’s right, for your family. Taking a nap is not a self-indulgent thing. It is another way to serve your family. A 20-30-minute investment will give you a huge bang for your buck! Ideally, allow yourself 10 minutes to wind down then 20 minutes to sleep.

Tackle high-stress tasks promptly and when your energy is most fresh. 

Recognize that the “perfect” IEP is not the ultimate end-goal for your child.

Release yourself from the weight of responsibility to find every “best specialist” or “best therapist” or “best teacher” or “best special education program” or “best everything” in town.Briefly ask questions or research online but cover it with prayer and then trust God to point you in helpful and productive directions. When the situation doesn’t seem ideal, remember that God is perfect strength in our weakness and will work out every single situation for His good purposes.

Know what triggers your personal stress then ask God to help you discern when to take action and when to let go of what is out of your control.

Choose healthy ways to pamper yourself. It may require getting a couple hours of help from a spouse, older child, parent, neighbor, friend, or church volunteer to make this happen. This may seem improbable but it is a worthy effort to seek such support with the same vigor you put into advocating for your child. Get a pedicure, soak in the bathtub or have coffee/tea with a friend. Watch a fun movie while snuggled up with your child or spouse. Gather up the family and take a short field trip somewhere fun and different than the usual routine like bowling, a wildlife museum, aquarium, or theme park. Plan a staycation day with your family or spouse. (There are times when it is appropriate and necessary to do this with your typical children but arrange care for your child with special needs to stay home.) Eat enough protein and veggies. It helps me to focus on putting more good things in my life rather than thinking about denying myself the more indulgent treats.

Don’t let guilt and unforgiveness fester. Confess your sins quickly. Give yourself permission to be imperfect. Ask your loved ones for forgiveness and grace. Give them the same. Seek the empowering Holy Spirit for help to live well and trust God to be the strength in your weakness.

Develop a practice of gratitude and reject a critical spirit.

Get counsel for chronic grief. It’s real. Find constructive ways to talk about it. Seek out friends and professionals who will empathize and guide you biblically.

Tackle household clutter as proactively as possible. However, be on guard about giving a tidy house too much power.

Saturate your mind with the truths and promises of God’s word.  Thankfully, there are many wonderful devotionals specifically for special needs parents these days. Check out Key Ministry’s Family Resource page for ideas. One of my mainstay tools is simply a good Bible reading app with a scheduled devotional. (YouVersion is my app of choice.) And I like that I can reset the calendar when I get behind on daily readings. No guilt here!

Prayerfully establish and protect boundaries, especially as it relates to interruptions and difficult relationships.

Do one unique thing each day to serve or encourage another person. This can be as simple as a Facebook comment or as involved as modeling generosity with your children by preparing a meal or cookies together for a struggling neighbor. Generosity and kindness are terrific energizers.

Do a daily review, thanking God for all meaningful connections, activities, results and happy surprises.

Finally, whatever is on our uniquely personal lists, there are two non-negotiable and reliably effective “best practices.” These are irreplaceable for any person seeking true and lasting refreshment, special needs mom being no exception.

Repent of sin and trust God.

Acts 3:19-20 Repent therefore, and turn back, that your sins may be blotted out, that times of refreshing may come from the presence of the Lord, and that he may send the Christ appointed for you, Jesus.

Drink deeply from the well of intimate relationship with Jesus. 

John 4:14 “Whoever drinks of the water that I will give him will never be thirsty again. The water that I will give him will become in him a spring of water welling up to eternal life.”

Best Practices of Refreshed Special Needs Moms by Lisa Jamieson first appeared February 21, 2019 on Patheos.com.

Lisa Jamieson is the author of books and Bible studies including theFinding Glory series of resources and the new children’s book Jesus, Let’s Talk. She is co-founder of Walk Right In Ministries and leads the Minnesota Disability Ministry Connection. Lisa and her husband, Larry, have been married 30 years and have three grown daughters. Their daughter, Carly, has Angelman Syndrome and lives at home with them in Maple Grove, Minnesota.

Miraculous Preservation

A common concern among caregivers, especially parents of children who have disabilities, is what will happen to our children if they outlive us. And as middle age comes, depending on the degree of toll in caregiving and other life circumstances, we caregivers tend to fear that our bodies may wear our long before we actually die. What then?

And so we pray a lot. As we’re able, we do some planning. Having an estate plan in place offers some peace of mind as does doing lots of documentation for those who will be inheriting the caregiving responsibilities. Our family has had many conversations about this and those are always very reassuring as well. But at the day’s end, when my body is aching and I’m weary to the bone (as they say), I’m left with taking it all to the Lord in prayer and begging him to preserve and protect my husband and I for as long has He possibly will!

Today I was reading the accounts of a missionary who travelled a ship between England and China in the 1930s. The ship’s route took them through the Red Sea with full views of the desert places where the Exodus occurred. Audrey Johnson’s pondering jumped off the page at me with reassurance that God’s capacity to preserve and protect His children is not limited by our physical bodies and minds.  

Audrey wrote:

Probably no one who reads Exodus can fully enter into that miracle of absolute dependence upon our faithful God who revealed Himself so clearly that throughout Israelite history and Psalms this miraculous preservation and protection was never forgotten. Think for instance of Deuteronomy 29:5 (which says): 

“For forty years God has led you through the wilderness, yet your clothes haven’t become old, and your shoes haven’t worn out” (TLB).

Audrey Wetherell Johnson

I want to remember this verse and the underlying promise it carries for our family too. Nothing has changed about God, His promises or His abilities. Jesus Christ is the same yesterday as He is today and forever. His character, power, goodness and accessibility remains as certain for me as it was for Moses. In fact, it’s even better because I (we) have access to God through the indwelling Holy Spirit!  

The very same God who so faithfully cared for the people of Israel makes the same kind of promise to me. His protection may look differently than I’m expecting but it remains dependable and will surprise me in the best of ways.

Whether you are a fellow sojourner down the caregiving road with me or someone who just needs reassurance, let us be confident of this — God is creatively preparing all kinds of “miraculous preservation” for us and for those we love.

Jeremiah 29:10-13
This is what the Lord says: “You will be in Babylon for seventy years. But then I will come and do for you all the good things I have promised, and I will bring you home again. For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope. In those days when you pray, I will listen. If you look for me wholeheartedly, you will find me. I will be found by you,” says the Lord.”


This post was inspired by the book Created for Commitment by A. Wetherell Johnson, founder of Bible Study Fellowship.