Category: Angelman Syndrome

Special Needs Dad Shares Hope for a Redeemed Life

Our guest writer today is Ken Atkins, a man who grew up in the pleasant surroundings of a small North Texas dairy farm during the late 1950s. From there, he wandered through a career that included schoolteacher, newspaper writer and editor, advertising executive and construction sales. When his son Danny was born in 1992, Ken faced the life-changing reality that Danny would require full-time care for his entire life. Ken’s journey meandered through the early days of doubt and discovery about Danny’s neurological and related medical issues, over the hills and valleys of a parents’ worst fears and highest hopes, past the financial and marital issues that eventually crushed his family, and into the deep pit of lifelong struggles with alcohol and relationship addiction.

But Ken’s story doesn’t end there. Read on as Ken shares how he found transformational hope and life-saving tools in taking one step of faith at a time.

“I am a grateful follower of Jesus Christ who has been redeemed from a life of alcohol abuse.”

For nearly eight years now, that is how I have introduced myself to the small group of other men I meet with each week in Celebrate Recovery. Celebrate Recovery, also known as “CR,” is a Christ-centered, 12 step recovery program for anyone — men and women — struggling with hurt, pain or addiction of any kind. It is a program that changed my life and the lives of my two children.

But if our introduction is meant to give others a quick glimpse into the truth of who we really are, I probably should amend it to:

“Hi, my name is Ken, and I am a grateful follower of Jesus Christ raising a son with Angelman Syndrome. I have been redeemed by a loving Savior and have experienced the joy of being forced into a world that I am totally unequipped to manage on my own.”

My son, Danny, recently celebrated his 29th birthday, but developmentally he is basically a happy, healthy 2-year-old. He can’t speak or walk unassisted. He is incontinent and his basic needs must be met by someone else, which would be me, at least 95 percent of the time. Danny has been my constant companion through career changes, divorce, bankruptcy, a couple of major relocations and more emotional roller coaster rides than any amusement park.

Danny sat next to me through many of my recovery meetings. This is fitting since he was the only person in the room or the truck as I fought my single-parent battles for years with a Bible in one hand and a bottle of vodka in the other.

Stock Photo: Pick-up truck parked in Wildlifepark Dulmen, Germany.

Step One in Celebrate Recovery, as well as in Alcoholics Anonymous and other recovery programs with slight wording variations, is this:

“We admitted we were powerless over our addictions and compulsive behaviors, that our lives had become unmanageable.”

One of the first and hardest lessons many parents of children with special needs learn after we get the news that our child has some physical, neurological or development issue for which there is no cure or even successful therapy, is that we are powerless. Initial attempts at denial include thoughts like: the diagnosis isn’t correct, we can fix this, we just need to look harder and do more, and God wouldn’t do this to our family. Eventually these arguments lose their sway to the preponderance of evidence that we must adjust all our thinking, hopes, plans, and dreams to this new reality.

RELATED RESOURCE: Discovery Your Course for Life, One Step at a Time by Ron Keller.

By the time we give up on our denial, we often do so out of sheer exhaustion and the depletion of our finances, if not our hope. Only then do we admit that our addictions, compulsions, or other problematic behaviors — like trying to “fix” our kids, or clinging to control over their lives, or unfettered devotion to our family’s dreams and traditions — are a greater threat to the emotional and spiritual well-being of ourselves and our children (including those without special needs) than whatever lifelong diagnosis we are confronting.

Only with that admission can our healing begin. Because only then are we ready to take the next steps in the recovery process where we come to believe that a power greater than ourselves can restore our lives to normal. It’s a new normal, to be sure. But at least it is our normal. Only then can we make the decision to turn our lives and our families, over to the care of God.

Ken coaching Danny and their adapted baseball team.

One of the many truths I have learned in Celebrate Recovery is that any addiction or compulsive behavior has its root in the same sinful place—pride. We believe that we can (and should) handle any challenge in our own strength. We think we have a God-given right to live our lives on our terms. Whether it is a drinking problem, or uncontrollable rage, or soul-shattering depression, or the physical and mental exhaustion of caring for a child with special needs, we are tempted to believe these are our issues and we can handle them.

But it was never meant to be that way.

God didn’t give us these challenges to show us how strong we are, but to show us our dependence on His strength and His faithfulness. We are entirely dependent on God to meet the special needs of our child, and our own special needs in the process. We get the joy and the honor to have a front row seat to what He can do in all our lives.

There is a saying on t-shirts at many church camps that we should, “Let Go and Let God.” In recovery, and in my life as a parent of a special needs son, I have found this message being worked out again and again.

God has blessed me and my son in many ways these past 29 years. But before He could do what He wanted to do, I had to quit trying so hard to do what I could not do.

Psalm 107:13-15
They cried to the Lord in their trouble, and he saved them from their distress. He brought them out of darkness, the utter darkness, and broke away their chains. Let them give thanks to the Lord for his unfailing love and his wonderful deeds for mankind.

Ken Atkins is the author of Silent Son, the story of how God turned one man’s mess into a life-giving message through his non-verbal son, Danny. Ken has been serving in Celebrate Recovery ministry leadership for more than five years. He leads men through the 12 Steps that have given him the tools and support he needed to face the challenges of raising a son with special needs. Ken and Danny enjoy multi-generational living in Newport News, Virginia, with Ken’s daughter and son-in-law.

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.

I Considered a Life Reset and Got the Reboot I Never Expected

In the late spring of 2020 when it started becoming clear that Covid quarantining wasn’t going to end soon, I started realizing a lifestyle reset was in order. It took several months and an untimely accident to shake me to my core and get my soul powered up for the long winter at home parenting an adult child who doesn’t understand why her world has so dramatically changed.

You know how it is when you restart your computer. The process is designed to clear errors and bring the system to normal condition in a controlled manner. My phone reminds me on a weekly basis to restart all of my devices. I’m told that a reset puts less stress on the hardware than power cycling because the power isn’t removed. How interesting!

I would really like my life to be cleared of errors and to feel like it’s working in an orderly manner. And, as this computer metaphor suggests, I would benefit from staying connected to my Power Source in the midst of transitions.

Life sure does benefit from a ‘restart’ now and again. Many of us try to reset our priorities on New Year’s Eve. A new schoolyear and birthdays are seen like fresh starts for many. Spiritually speaking, repentance gives us a chance to begin anew too.

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

2 Corinthians 5:17 
Anyone who belongs to Christ has become a new person. The old life is gone; a new life has begun!

I’ve been desperate for refreshing lately while asking God to protect some old stuff I actually did NOT want gone!

My 22-year-old daughter Carly has Angelman Syndrome and lives at home. Her anxiety and difficult behaviors have ebbed and flowed through degrees of troublesome to exhausting throughout the pandemic. She’s confused. She’s lonely. She’s bored. She needs more physical touch — lots more. Like you and me, she’s sick of it all. But she doesn’t have effective coping skills or communication abilities to give voice to her many feelings and needs. She’s destroying clothing (chewing collars and sleeves, literally ripping pajamas off at night and risking damage to her teeth on zippers). She’s having trouble going to sleep at night and staying asleep throughout. She gets agitated during the day without our creatively offering as many choices as possible on laminated photo cards. I fear the poor girls feels like she has no control over her world anymore. Last week she bit me twice — hard. This from the girl who hasn’t bit me more than two or three times in her whole life until now.

In the midst of navigating Carly’s needs, the usual household chores and several pressing work deadlines, my husband and I sat down to finish recording a presentation we were doing for the Wonderfully Made Conference. We wrapped up just before lunch one day back in September and I decided to eat a sandwich on our deck while catching up on a few emails. After that I was going to record another of my personal presentations.

It was in that moment of sunshine when our already sideways world turned completely upside down.

I spilled a full glass of orange juice on my laptop. Let’s just say that the past four weeks since that day have been deeply disappointing, stretching and eye-opening. The irony of the situation was not lost on me. The conference presentation I was going to record after lunch that day was titled, “RESET: A Seasonal Necessity for Special Needs Families.”

My original inspiration for the subject was the pandemic. Now I was living a metaphor that had me squirming deeply. It took me to my knees day after day while we waited for the data recovery specialist to bring news that my badly damaged hard drive was restored. A couple of weeks went by and the conference organizers were graciously waiting on me. But their window of flexibility was quickly narrowing. Other concerns and timelines were looming too.

One morning, I had a caregiver staffed with Carly for the day so I could get back to regrouping and trying to record my presentation from memory — without my notes or PowerPoint slides. I was tempted to throw down breakfast and head straight into the battle before me. I longed to take a cup of tea and my Bible to our deck as the warm fall days will soon be past. But that felt indulgent on a day when opportunity to “take the hill” was in front of me and I had help with Carly for a limited time.

Reluctantly taking a lesson from myself and many past talks I’ve given to countless others, I leaned into Jesus’ prompting to carry His lighter burden and go to the deck anyway. Against all my task-oriented leanings and self-reliant ways, I tried to yield to that still small voice that wooed me, “be still, Lisa.” One of the original verses I had planned to reference in the RESET talk was ringing in my ears, “Come to me…find rest for your soul.” (Matthew 11:28-29)

I sat down wondering where to open my Bible but got distracted. My mind wandered to Joshua 3 and 4. Those are favorite passages that inspired the naming of Walk Right In Ministries back in 2008. And they continue to be reminder and inspiration to me about walking in faith, one step at a time, and trusting God to show each next step as I trust Him and obey Him.

For a moment I got curious. What, specifically, happened right after the Israelites crossed over the Jordan River to the Promised Land? I could specifically recall. I knew that their lives of slavery and then wandering in the desert were followed by a period of many victories in battles that seemed insurmountable. But I couldn’t remember whether the Bible gave any specifics about the transition period between marking the Gilgal spot with a pile of rocks and then heading into that first battle.

Immediately, I had a sense that there could be clues in Joshua 5 or a powerful example of a God-style, God-sized, power-packed reset. What I found there was, in fact, a gold mine. Within about 15 minutes time, I had a roadmap and encouragement to step back into my life with peace and a renewed sense of empowerment. My fear was gone and my frustration was released. The sense of pressure I felt to dig into my projects no longer had a grip on me or my blood pressure. I felt like the soldiers walking quietly and patiently around Jericho simply waiting for the final blast of the horn. I wondered what walls God was planning to throw down when I had the chance to shout praise for His perfect timing and process on the road to my Promised Land.

That was a holy moment in my life. Reading Joshua 5 and 6 with a deep personal need and new perspective was just what I needed. I was no longer stuck and my process for a course correction was clear.

As a bonus, I had a brand new (and much better) outline for my presentation. What would have taken me a couple of days to rebuild, had been reestablished with fresh perspective and new fire (passion) in just minutes. Once again, the Divine irony.

Here is the Joshua reset model God showed me.

REAFFIRM IDENTITY — Joshua 5:2-7

Remembering WHO and WHOSE they were was essential to claiming the promises and hope ahead. The only reason that circumcision mattered was because there was a promise on the other side.

We tend to let disability start to define us as individuals and a family. We can tend to give disability too much power over our grief, logistics, attitudes towards caregiving, etc.When one of our daughters once exclaimed in frustration many years ago, “We’re so high maintenance!” I knew we needed to review how we thought about disability in our family.

Romans 2:29 
True circumcision is not merely obeying the letter of the law; rather, it is a change of heart produced by the Spirit.

REST — Joshua 5:8

Before heading straight into battle, the Israelites spent time recovering and regrouping from everything behind them.

Getting adequate self-care feels impossible for many caregivers. We need to have compassion for ourselves in weakness and trust God while we fight for refreshment in mind, body and spirit. I fight as hard for sleep, respite, vacations, staycations and deep connections with loved ones as I ever did for Carly’s IEPs, quality medical care, therapies and healing.

CELEBRATE — Joshua 5:9-10

God told them to roll away the shame of their slavery in Egypt. He knew that the Passover Feast (a celebration of God’s faithfulness) would restore their confidence in Him, boost their morale and bond them as an army of warriors for the battle ahead.

Our investment in celebrating birthdays, anniversaries, holidays and family reunions — despite how difficult that can be to make happen — is a way to cultivate appreciation and grace for each other while developing relational bonds. Those bonds will be valuable to us and our children’s future in ways we probably can’t fully understand now.

FUEL UP — Joshua 5:11-12

The Israelites stopped eating the manna of the past and starting nourishing on the crops of Canaan (the Promised Land).

Ecclesiastes 7:10 
Don’t long for the “good old days,” for you don’t know whether they were any better than today.

We have to keep saturating our minds with God’s promises, our future hope. There is too much temptation to dwell on life’s ease before disability or fantasies about what the future would look like without it. Fueling up on gratitude and God’s promises helps me keep my goals and priorities in perspective. Effective soul care keeps me energized too. Our family has used Christian temperament therapy for almost 25 years to understand how God uniquely created each one of us. And that helps us learn to optimize our strengths, recognize our weaknesses and vulnerabilities, and teaches us how to tap our full potential by leaning into the power of the Holy Spirit within us.

WALK IN ATTENTIVENESS TO GOD — Joshua 5:13 to Joshua 6:21

The Israelites needed to pay attention to God every step of the way. As he walked toward his battlefield, Joshua asked God, “What do you want your servant to do? (Joshua 5:14-15) As God’s army of chosen people asked for His leadership, trusted His strategy, obeyed methodically and responded thoroughly, God made them strong.

Seeking God for guidance and help as a lifestyle impacts how we put supports in place and build teams (respite staff, volunteer helpers, medical providers, supports planners, church, IEPs, guardianship and wills, etc.). God is ready to help us handle crisis (illness/hospitalization, pandemic) and approach transitions (education, caregiving team, jobs) too.

Joshua and the Israelite army did not rush but walked methodically in faith and obedience (Joshua 6:3-5) trusting for the promise (Joshua 6:2). They had to be thorough in their obedient follow-through by destroying everything and not taking anything with them. All of the plunder was to be an offering to the Lord. (Joshua 6:17-21).

This day and this situation is not just about WHAT and WHOSE battles we fight but HOW we fight them.

Matthew 11:28-29  Then 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…and you will find rest for your souls. 

I’m still unpacking the full meaning of Joshua’s reset model for my own march toward the promises of God. And I’m excited. I’m no longer stuck in regrets about the past or lamenting what is lacking yet today. I’ve captured the vision of my Israelite ancestors and I’m walking in freedom, anticipating the surprises of God’s love.

What can this look like for YOU?
What are your next steps toward the promises God has for you and your family?
What is on the other side of COVID, our marriage storm or disability?
What is on the other side of anything that is disabling you or your family?

Like Joshua, let’s stop right now and pray, “What do you want me to do?” and then worship God. Joshua worshipped by taking off his sandals and recognizing the holiness of that moment on the edge of promise (Joshua 5:15).

Recognize YOUR Holy Moment!
Walk closely with your God and let Him pave your way to His love.

Watch Reset: A Seasonal Necessity for Special Needs Families.

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.

22 Years of Trail Mix

I’m not a trail mix fan. Never have been. I still only tolerate raisins and just started showing enthusiasm for dried fruit a couple of years ago. I prefer my snacks separated into their own bowls. But the last 22 years are a trail mix of emotions and memories for me. And for all the ways and times my mind, body and spirit have been thrown into chaos since Carly was born on this day in 1998, I’m profoundly grateful for the rich texture and depth of flavor she brings to our collective lives.

Carly was diagnosed with Angelman Syndrome at two-and-a-half years old.

Carly is a woman who will test the limits of your wits and then move in to give the most generous and satisfying hug you’ve ever received. Her smile lights up a room. Her grin assures you there is much on her mind. Her laughter is infectious. Her high-decibel scream warrants ear protection. When she’s hurting, she’s a puzzle to help. When she’s aggravated, she’s strong as a horse. When she has energy to burn, she’ll use every inch of her small frame to knock you down and wrestle on the rug. When there’s food around, her arms seem many and long. Forever curious, even nosey at times, she’s been affectionately called a “seizer of opportunity!” She’s a sneaky rascal and fiercely stubborn. That curiosity and energy serve her well. A dance party with Carly finishes out any day perfectly. She pours music and praise from her soul. I have huge respect for her perseverance. She’s exploded my own faith and expectations on a number of occasions. For all the times we have to ask her to “just wait” while using a full body block to keep her from tearing into something or knocking something down, I don’t know anyone who would be so patient as she is.

We’re celebrating Carly’s 22nd birthday today. Larry and I were married at 22 so this number throws another few layers of nostalgia and emotion to all the feels. We had an epic dance party that night. We’re going to have another one tonight with all three of our incredible daughters and a bunch of other loved ones. They will join us virtually on something called Zoom. Yes, it’s an epic year, isn’t it?

When I shake the bowl of my feelings today, the ones that quickly rise to the surface are pride, gratitude, hope and joy.

Happy birthday, Carly! We’ll try to give you gifts you love. But, truly, YOU ARE THE GIFT.

1 Thessalonians 3:9
How we thank God for you!
Because of you we have great joy as we enter God’s presence. 



NOTE: Carly’s oldest sister is the one helping Carly make trail mix in the featured photo. Rest assured, that is a sweet moment I was happy to watch them have together. But I had no interest at all in eating the snack with them. Even without the raisins, I’m not interested, thanks. 🙂

Selective Sharing

A few months ago, I posted this statement on Facebook:

“I don’t believe it can be overstated how stressful and wearying it is being the parent of someone with significant developmental and medical needs. There is also unspeakable joy. But make no mistake that this life is OFTEN more than overwhelming. I speak for my own family and many others when I ask you to pray hard and regularly for anyone you know living this life. We need your persevering friendship and sometimes help. We wish we didn’t need help, and very often we don’t even know what to ask for. But we can’t do this alone. Practical, emotional and spiritual encouragement is a gust of wind in our sails.”

Lisa Jamieson’s Facebook post | April 2017

This got a reaction.

Most people who responded were caregivers themselves. They resonated deeply with the sentiments I expressed. The rest of those who responded were encouraging friends whose comments usually indicated that they were praying for me.

I was grateful for the prayers but even more moved by the hunger among caregivers to feel noticed and heard. Since so many caregivers practically begged me to get this word about their (our) chronic stress out more broadly (on their behalf), I posted again the next day with a very personal and rather lengthy explanation about my own chronic stress and why I talk about it the way I do.  

I wasn’t expecting to post it, yet again, on my blog. But subsequent conversations suggest it deserves one more share. So here goes…

WHY DO I SHARE WHAT I SHARE?
AND WHEN I DON’T SHARE, WHY NOT?

There are a variety of reactions I encounter whenever I talk about how chronic stress is affecting my family and others in intense or complicated, often long-term circumstances. 

SHOCK
WORRY
APATHY
DEFENSIVENESS
RESONANCE/APPRECIATION

Obviously, not every reaction is helpful to a family like ours. But trust me, I understand most people are well-meaning and I’m very hesitant to criticize any reaction — I mostly appreciate ANY reaction (except apathy). Larry and I don’t expect perfection in understanding. But we do hope people at least care. And try. And we hope people won’t over-simplify what we are experiencing. That feels like invalidation of something that is very big and very real for us.

Some people want to better understand this so I’m going to try and explain more about it today and I’m going to be pretty transparent.

I know that I’ll be articulating perspectives that are not just my own because I’ve had emotional discussions with others about this very issue. One of those conversations was as recent as this morning when a friend called me from another state about the post I shared yesterday.

Yup. This hit some nerves.

When we don’t talk about our challenges very often, it is not uncommon for people to think that all is well. Some others who have some idea that life is always hard over here at the Jamiesons think we are just trying to keep a “stiff upper lip” or are wanting to be self-sufficient in our challenges. Some people believe we are trying to be “missional” in an effort to “look” put together with the power of God.

Seriously, we’re not trying to hide anything or even prove to anybody that “God’s got this.” 

Don’t get me wrong, I certainly hope my life points people to Jesus and shows that God is fully able, accessible and worthy to be praised. Because He most certainly is. I don’t know how anybody lives through a crisis like this without a relationship with Jesus Christ. But that’s not what underlies my philosophy (or for lack of better word, strategy) for deciding when and how to share the inner realities of my situation.

Of course we hope people will somehow see Jesus in us — whether through how He meets us in our challenges or for any other reason! Don’t we all want to see evidence that the living God is real? But the way I express my stress publically is way more selfish than that. Larry and I are, first and foremost, trying to live in a way that helps us thrive as individuals, a couple and a family. In the process. We just want to live within relationships that are REAL.

I gave up trying to tough things out a long time ago. I do just exactly what I have to do every day to survive and thrive. So, trying to look “good” or more “Christian” is far from the reality for me and Larry. We always want to be authentic with people and we highly value people who are willing to be real with us. In truth, there are a whole host of reasons why I talk about our specific challenges or overwhelm rather infrequently compared to how often we are actually struggling. For today, it’s important to me that you know WHY. God seems to have prompted me to just lay it out here for whoever cares.

“I don’t want to look normal for your benefit. I want it for me. So even though taking a shower, fixing my hair and putting on a cute, comfy outfit to go out in public takes the alignment of stars at my house and risks masking a reality about how much I need your prayers, help and friendship — I’m going to risk it.”

So, in no particular order, these are just a few of the reasons why I personally don’t talk often or widely about the specifics of my personal stress… 

  • I’m not always in touch with the reality of how extremely stressed out I am.
  • I function on autopilot a lot.
  • I don’t want people feeling sorry for me. 
  • I have all the same stresses everybody else does and would really like those to be recognized as part of who I am too.
  • A whole lot of people would rather just believe that “it’s all good” over here. 
  • Some people just want to cheer me up. 
  • Some people tell me, “you deserve to feel sorry for yourself.” This isn’t helpful for me. I appreciate the attempt at empathy but I don’t believe this is right thinking and it is rarely helpful for me to go to that place.
  • I spend a lot of my daily energy trying to pace my energies and emotions. That means I have to spend proportionately high amounts of time with Jesus and in prayer. Since my physical body is increasingly deteriorating due to Carly’s 24/7 cares, my age, long years without adequate sleep, etc., I have to give some priority to taking care of me as best I can (which is never really enough). I need more naps than the average person because I spend a lot of time awake at night. I need to serve others. It’s a great outlet for me — gives me a sense of purpose and keeps me from feeling consumed with my own challenges. Needless to say, all of that doesn’t leave a lot of time left over for complaining and explaining. 
  • Sometimes I’m just plain tired of explaining.
  • I don’t like people dismissing me as a “drama queen.”
  • I get tired of feeling like I have to be one of the world’s “teachers.” 
  • I weary of the disappointment of trying to build understanding and having my hopes and needs for resonance dashed when people don’t “get it.”
  • I don’t want to get my hopes up that someone will care (reach out) only to be disappointed.
  • When my situation is most overwhelming, I feel unable to explain my situation or emotions. My mind and heart feel too complicated to explain. So, if I feel able say anything at all, I just try to articulate even one thing I know people can pray about or help with. But that can give the impression that just one thing is weighing on me. (Yet, rest assured, whatever I am saying out loud is probably just the tip of the iceberg with lots more behind it.)
  • It helps keep me out of depression and those woe-is-me places if I focus on what is going well and what I’m grateful for.
  • Focusing on Carly’s strengths gives her the best shot of reaching her potential. 
  • Focusing on Carly’s strengths (instead of why she’s making things hard for me) feels more respectful to her.
  • Any time I talk about how hard it is caring for Carly, I risk undermining our ability to ever find or hire respite helpers (because people think they won’t be able to handle it).
  • I don’t want to worry my family.
  • I don’t want people to quit sharing their own concerns with me because they feel badly that their own issues may seem insignificant next to mine.
  • I often feel misunderstood and since I’ve been misunderstood a lot in my life, I avoid that pain.
  • I don’t want to feel analyzed.
  • I get tired of talking about the same thing. Being “that person.” Sounding like a broken record.

When you boil it all down, this is probably the biggest reason why you don’t regularly hear about or see the degree of my stress:

I WANT TO LOOK AND FEEL AS NORMAL AS POSSIBLE. 

I don’t want to look normal for your benefit. I want it for me. So even though taking a shower, fixing my hair and putting on a cute, comfy outfit to go out in public takes the alignment of stars at my house and risks masking a reality about how much I need your prayers, help and friendship — I’m going to risk it. Because for a couple of hours, I’m happy to be clean and out in a “normal” world feeling like a “normal” human being with a “normal” life. Any illusion is for me. Not for you.

And here’s one more thought for you to chew on. If I wrote about this regularly, many of you would have stopped reading my posts a long time ago. You’d be too overwhelmed, irritated, or numb. My perpetual drip of whining would wear you down and lose its oomph. (For some people, it already has. They’re not even curious and are no longer reading this right now.) 

So, consider this “rant” my way of trying to get your attention and urge you to remember there are friends around you struggling mightily with chronic hard stuff — whether or not they look like it or sound like it. Please don’t check out on them, whether they are good at how they handle their communication or not. (Doing this well is hard and even harder when you’re stressed out and/or sleep deprived.)

Thank you for listening. I’ll write again soon. 

But not too soon.

NOTE: This blog is a repost from an “Open Letter” Lisa shared on Facebook in April 2017.


Accessibility Summit 2017 in Washington, DC

Celebrating its 17th year in March 2017, the Accessibility Summit is a national conference designed to offer a broad range of information and resources to individuals, families and caregivers, faith-based organizations, educators, and other professionals impacted by disability. There will be 40 workshops and over 60 disability-related exhibitors. Saundra Adams and Joni Eareckson Tada are guest speakers.  Registration has just opened and early bird discounts and group discounts are available. 

Walk Right In Ministries is privileged to be sharing a workshop too. Larry and Lisa Jamieson have presented at the conference in years past, sometimes individually and sometimes as a couple. In 2017, Lisa will have the unique opportunity to present with their two oldest daughters, Alex and Erin. Information about their workshop is shared below for those who have interest and for those who are willing to pray for us. (We are very grateful for your prayers!) Check the Summit website for a complete listing of workshops, exhibitors and speakers.

PARENTING SPECIAL SIBLINGSThis interactive session opens a dialogue about the challenges, disappointments, advantages and opportunities of being a sibling in a family affected by disability. It is led by Lisa Jamieson, the mother of three adult children and author of Finding Glory in the Thorns. Lisa is joined by her adult daughters Alex and Erin who share candid perspectives about growing up with a sibling who has Angelman Syndrome which involves chronic health issues and severe developmental disabilities. Discussion topics will include sibling conflict, balancing attention, grief processing, dealing with social stigmas and misunderstanding, family vacations and managing stress. Participants will leave encouraged with basic principles and numerous practical ideas about how to enjoy more victories and deeper graces despite the reality of weaknesses in every family. 

Presenters: Lisa Jamieson, Erin Jamieson, Alex Jamieson
Theme Verse:  2 CORINTHIANS 12:9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” 

Lisa Jamieson is a national speaker, author, consultant and advocate who serves as Executive Director of Walk Right In Ministries and leads Minnesota’s Disability Ministry Connection. Her books include Finding Glory in the Thorns and Living Your Glory Story. She is also creator of the Finding Glory small group curriculum, a favorite of caregivers and others wanting Christ-centered discussion through challenges. Lisa and husband Larry have three adult daughters. Her daughter, Carly, has Angelman Syndrome and lives at home. Their story has been featured on Words to Live By, 100 Huntley Street and My Refuge Radio Belize. 

Alex Jamieson is a senior audit assistant at Deloitte (Minneapolis). Active in her church and as a community soccer coach, Alex also volunteers with Walk Right In Ministries as an occasional speaker and regular encourager to families experiencing special needs. She is the oldest sibling to a sister who has Angelman Syndrome. During her high school years, Alex worked as a personal care assistant and has since become a strong advocate for her sister Carly and others who experience disabilities. In her blog “Authentically Alex,” she reflects on a range of topics from setting goals to dealing with life’s transitions. 

Erin Jamieson is a singer-songwriter and worship leader. Her songwriting, blogging, and speaking is often inspired by challenges and insights experienced growing up in a family affected by disability. The title cut from her debut EP Without the Dark is featured in the movie Season of Miracles about a baseball player with autism. Erin is a senior at Belmont University in Nashville where she recently performed in the 2017 Christian Showcase. Her latest release No Dream Too Big is available on NoiseTrade. Erin’s youngest sister has Angelman Syndrome.

Please share about this conference with your own friends, family and church leaders. You can forward this post and share the link on social media.
Thank you – we hope to see you there!

Whole-Hearted Engagement With Those Who Suffer Isn’t Optional

Loving and praying for each other is not optional and scripture doesn’t leave room for anything but whole-hearted engagement with people who are suffering. True, it can be overwhelming, scary and messy learning to engage in the lives of others when their needs are  complex (e.g., disability, mental illness, aging, traumatic injury, chronic illness). But people with atypical lives are not a liability to the church. They are what enrich the church! 

No situation is too big or too complicated for God.


Delightful Opportunity for Dance Studios & Special Needs Families Nationwide

Do you know a child with special needs who would jump, twirl, bounce and hum at the chance to be part of a dance class? Darby’s Dancers is a wonderful new adapted dance program (non-profit based in Alabama) that has been growing rapidly nationwide. My daughter, Carly (with Angelman Syndrome, del+) has been in the program for 3 years and loves it!  Classes and costumes are FREE to students with special needs and each student is paired with a volunteer coach-helper.

I have come to know the founder of the program quite well and have offered to help her get the word out to others. Here’s her greatest challenge:

In signing up new studios to host Darby’s Dancers programs, they are finding that studios are very eager to support the concept but apprehensive about whether they will get enough students to fill their class(es). For example, right now Darby’s Dancers has two studio owners on the brink of signing — one from GRAND RAPIDS, MI and the other in MADISON, WI.

There is no question in my mind that lots of families want this type of program. It is just a matter of getting the word out. And as I know all too well, non-profits have limited budget for marketing. So we need to rally the word-of-mouth troops — and that’s YOU. Please help spread the word about this fantastic opportunity! Studio owners and the Darby’s Dancers team want to connect with parents of children who have special needs and organizations who serve them. These connections help them get the word out and build confidence with potential host studios that there will be enough interest.

Anyone interested in having a child participate and studio owners wanting to know more about offering classroom space should contact Valerie Jones darbysdancers@yahoo.com.
http://www.darbysdancers.com

One Father’s Desperation Holds Urgent Lesson for Us All

These comments from July 25, 2015 warrant reposting today.

The Angelman Syndrome community worldwide has been reeling this week — experiencing a horrifying, heartbreaking loss. Never before has my passion been greater that caregivers need support, encouragement, a place for resonance, an adequate rhythm of respite and the kind of hope and strength that only Jesus Christ can give. 

Take a moment to read/watch the full news story (July 23, 2015). Click here: “Facing changes to the respite care situation for his 16 year old son, a father took his son to an area park and killed him” and then killed himself.

I’ll never be able to thank enough the many people that have poured into our family so that we can thrive amidst the 24/7 weight of “extreme caregiving.” Some seasons have been better than others but there’s no denying that the way people have come alongside to support us is remarkable. (It should not be remarkable. It should be commonplace for all of us to have enough compassion and margin in our lives to reach out to others who are so stretched.) 

While I can’t fathom taking the kind of action this dad took, Larry and I (as well as our oldest children Alex and Erin) all know too well the kind of desperation that can be felt behind closed doors when things like difficult behaviors, seizures, diaper catastrophes, cyclic reflux vomiting or sleep deprivation have taken us to our wits end. My heart aches and a sense of nausea wells in me when I consider so many friends who struggle daily with deep depression and/or sense of overwhelming loneliness/isolation caring for a loved one. 

Our culture doesn’t value caregivers enough, doesn’t pay respite staff enough (it’s extraordinarily difficult even to find people willing to work this type of job at ANY rate of pay), doesn’t encourage enough. Yet there are shining examples of progress. For example, the heart behind Caroline’s Cart and practical value it is bringing to families is like a hug from God. 

We must pray for the reality of this need for community and outreach to sink in and fast. May all of us to value more highly our opportunities to encourage one another, lead lifestyles that prioritize time to support a weary friend and have courage to ask for help when we’re struggling. May we create churches that go beyond just being welcoming places to becoming places that truly ENGAGE with these families, do more than just “be nice” and actually figure out how to carry another’s burden. 

Lord, help us all.