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.

Remembering Well: Good Friday 2020

You can watch Lisa’s Real Talk livestream above. The article below highlights the spirit of her message on caring for each other by remembering well.


National leaders have been talking a lot about caring for each other these days.We’ve talked about things we can do to help protect each other during the coronavirus pandemic:

Wash hands
Cover your mouth
Keep physical distance
Stay home

Today I was listening to the news and hearing compassionate guidance for families grieving the death of loved ones during this time exceptional time of loss. My own aunt passed away last weekend. My heart aches for her siblings (including my dad), my uncle and cousins who couldn’t be present with each other through her last weeks and hours. Nor can they say remember her within the fellowship of loving community the way people typically grieve (at least for now). My cousin’s wife is a funeral director. Like so many working in funeral homes, she is wrestling to help families when there are so many new protocols and limitations on our rituals.

It got me thinking about what we’ll remember most about this pandemic thing.

I hope we remember this season in ways that are honorable.

honorable to people who lived through it or died during it

    helpful to those who come after it

         and pleasing to the God who walked through far worse for us.  

How do we do this? How do we honor those who are lost or the ones who are sacrificing so much in during this time?

I think we might best honor this season by how we remember it. And how we remember this time starts with what we do with it now.

What kind of memories are we creating during this shelter-in-place experience? I’ve been thinking about this. I’ve been praying that God would show me how to be attentive to Him in how I spend this opportunity. Yes, something is getting spent here in this surreal way of living. I’m not trying to lay a guilt trip. I’m hoping to cast a vision. Because I’ve caught a vision. I believe God starting planting it in Larry and me years before this isolation season was thrust on the rest of the world. Because, you see, special needs families like ours already know some things about the shelter-in-place lifestyle that the rest of the world is just starting to learn.

We raised our family trying to be intentional about creating good memories. Disability was so consuming of our life. And the risk was great that Carly’s needs would flavor our life in such a significant way. Larry and I didn’t want our challenges with Carly to be what our other children remembered most about growing up a Jamieson. We understood that the challenges would bring them some helpful lessons and memories too. We just didn’t want those challenges to have inappropriate or disproportional weight or influence. So, now and then we tried to dream up some remarkable things that would stand out in their memories alongside the blessings and challenges of being a special needs family. For example, our vacations opportunities were rare and challenging but we did what we could to make some happen. Sometimes that even meant planning an epic staycation. But we also tried to make special things out of everday stuff. The phrase “power fold” is packed with nostalgic meaning for our family. That story is for another day.

In a similar way, I think we have a need and opportunity to be intentional about creating memories of this time too. I’m been thinking: how can we honor and care for each other beyond the handwashing and social distancing — especially to honor those who will live on and those who gave everything for us?

We can work with great intention NOW to make sure that the lasting message of this season — the legacy of this time — is a helpful one. We can do this for the sake of those who gave so much, for the sake of our children and for the sake of future generations. We can work with intention to care well for each other — not just in protecting each other’s physical bodies from harm of the virus but also by caring for each other’s souls (our minds and spirits). We can remember God. We can share hope. We can lead in faith. As special needs parents, we can feed our own souls and find others who will lead us well so that we can, in turn, lead our families well.

I’m been thinking: how can we honor and care for each other beyond the handwashing and social distancing — especially to honor those who will live on and those who gave everything for us?

God has been telling us to “remember well” since the earliest days of mankind. He showed us how to throw feasts and gave specific instructions about what to celebrate at those feasts. God knows our need to focus our minds rightly. The Old Testament feasts helped our ancestors do that. Practicing things like communion and Christian holiday worship services help us remember and enjoy God’s presence and power among us. When people looked back on their memories with a focus on regret or longing for the former times, God warned them. He said there was a better way.

God knows our need to focus our minds rightly.

At Walk Right In Ministries, one of our favorite examples of God showing his people how to remember well happened at the Jordan River at the brink of the Promised Land. The story is told in Joshua, chapters 3 and 4. That experience inspired the name of this ministry. You can read about it here.

Now, because it is Good Friday, I got thinking about Jesus’ sacrifice and how we remember that. Do you see the “rabbit trail” I’m on here?

What does it look like for me to remember and honor Jesus’ sacrifice well?

  • Today especially, I want to acknowledge my depravity and self-centeredness
  • I’m trying to express deeper and more frequent gratitude for what He gave up for me
  • I want to own my faith story and live it well so that others will see that God is faithful

1 Peter 3:15
Instead, you must worship Christ as Lord of your life. And if someone asks about your hope as a believer, always be ready to explain it.

So what do you think the legacy of this pandemic will be? There are a lot of people speculating about that.

  • Today, I want to suggest that we NOT PASSIVELY WONDER.
  • I want to suggest that we start today BEING INTENTIONAL about creating memories.

We can work with intention to care well for each other — not just in protecting each other’s physical bodies from harm of the virus but also by caring for each other’s souls (our minds and spirits).

This doesn’t need to be a big or complicated master plan. I think the power lies in a combination of two things:

  • Being attentive to God’s prompting in simple moments during the day or week.
  • Thinking creatively about a few grand gestures.

Some of my most treasured simple moments so far have been learning how to sign the message of “Happy Easter” with Carly, baking cookies six times more often than usual, playing Family Farkle on Zoom with extended family, sharing goofy Marco Polo chats with our daughter across the country and having daily conversations with my husband about our fears, frustrations or hopes. When it comes to the grander gestures that will likely flavor the way we remember this time, a couple of things that come to my mind are two birthdays we celebrated during the pandemic, the tremendous sacrifice Carly’s caregivers made to help us through (and that are allowing me to share with you like this right now) and a special Easter egg hunt we created for a couple of neighbor kids.

What I want to help others remember most about this pandemic experience is three things:

  • This was a time when we learned to enjoy each other much more meaningfully.
  • This was a time when we learned to experience God more intimately.
  • This was a time when we learned to share God’s love with others in ways that were both profoundly satisfying for their souls and highly honoring to God.

Joshua 4:21-22, 24
Then Joshua said to the Israelites, “in the future, your children will ask, “What do these stones mean?” Then you can tell them…”He did this so that all the nations of the earth might know the power of the Lord, and that you might fear the Lord your God forever.”

Psalm 27:13-14
Yet I am confident that I will see the Lord’s goodness while I am here in the land of the living.
Wait patiently for the Lord. Be brave and courageous.
Yes, wait patiently for the Lord.

John 14: 12
“I (Jesus) tell you the truth, anyone who believes in me will do the same works I have done, and even greater works, because I am going to be with the Father.”


Would you like to connect in a private small group setting to dig deeper into God’s word and grow with others who are caring for a loved one with disabilities?

I’m so excited to invite you to join me and other special needs family members for a new weekly Zoom video conference called Real Talk Multiply! We love shared stories at Walk Right In Ministries — especially when they bring encouragement and/or Christ-pointing insight within community.

Here’s the link but you’ll need to write to us at info@walkrightin.org to officially register and get the Meeting Password.
“Real Talk Multiply” Virtual Gathering on Zoom: https://zoom.us/j/918676626

Real Talk Multiply also offers a private Facebook group for ongoing discussion outside of the video conference gatherings. We simply ask that you keep those conversations confidential, respectful and spam free.

The Real Talk Multiply community begins April 14th, 2020 and will continue every Tuesday from 2:00 pm until 3:00 pm (Central). Holiday and vacation exceptions will be announced in the private “Real Talk Multiply” Facebook group.

Join us whenever you can!


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

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.

Carly’s Thanksgiving Story

Carly Jamieson took her first steps when she was 3 1/2 years old. That came after years of stress and tears because her sensory issues were so severe that she couldn’t even tolerate being held in her parent’s arms for feedings until she was 9 months old.

At 2 1/2 years old, Carly started having seizures and was diagnosed with Angelman Syndrome, a rare genetic disorder involving a deleted portion of her 15th maternal chromosome. Despite the fact that Carly faced a grim prognosis and had been experiencing significant developmental delays, a sleep disorder, feeding problems, and seizures, a miracle story of community and a child’s potential was unfolding.

For over three years, sixty volunteers surrounded Carly’s family with help and prayer. That support set a foundation for amazing progress that continues bearing fruit in many ways yet today.

The heartwarming story of God’s love through that community during those early years of Carly’s life is told in the book Finding Glory in the Thorns.

That story was also the inspiration behind Christ-centered support groups that utilize the Finding Glory Group Discussion Guide.

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Click HERE to find the complete Finding Glory collection of books at Amazon.

Today, Carly’s tolerance for touching things shows itself in the contagious affection, frequent hugs and exuberant smiles that are much more typical of someone withBut  Angelman Syndrome. She’s a little “rascal” with a great sense of humor. She loves music, dance parties, sitting beside her sisters at the piano, jumping, swimming, and helper her caregivers make pumpkin waffles. The quality of her gait is remarkable considering her prognosis and she sporadically uses a small handful of word approximations. She has twice walked over a mile in the Angelman Syndrome Foundation annual fundraiser walk with her mom, dad, two sisters, and many friends.

That baby who would not be held now snuggles with precious bear hugs and even sometimes says, “I love you.”

Carly is a gift!

We invite you to watch Carly’s Thanksgiving Story — an adventure tale that God is still unfolding.

What is Angelman Syndrome? 

Angelman Syndrome (AS) is the result of an abnormality of the 15th maternal chromosome. Individuals with AS have global developmental delay and cognitive disabilities. They rarely develop any speech but everyone benefits from learning to listen in new ways to what they have to say. 

People with Angelman Syndrome usually have unique behaviors and generally happy personalities. Most individuals with AS will experience seizures. Many also experience sleep and feeding challenges. The majority learn to walk but usually have balance and movement disorders. A normal lifespan can be expected.

Angelman Syndrome is very frequently mis-diagnosed as autism or cerebral palsy. 

With strong supports, people with AS can thrive surrounded by friends and loved ones engaging in meaningful activities and sharing their unique perspectives. 

ln a medical breakthrough, Dr. Edwin Weeber cured Angelman Syndrome in a laboratory mouse. Because AS affects one single gene it is much easier to understand than other neurological disorders like autism and Alzheimers’ disease. Funding for research has more potential than ever as researchers grow closer to making a treatment available for humans. 

Visit the Angelman Syndrome Foundation and the Foundation for Angelman Syndrome Therapeutics for more information.