Category Archives: Special Needs

New Year’s Day Thoughts – an excerpt from my journal

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Day one of 2025 is here. At midnight, our city had a spectacular display of fireworks. I know this for two reasons. One, I felt our house shake from all the “booms,” which caused our dog to whine and bark up and down the hallway, which woke our twenty-something daughter with disabilities. Second, a friend who lives in a village just across the river posted a video this morning of the show from her balcony. I apprecitated the show better from her point of view.

This morning felt heavy – and not from partying the night before. When you have a child with disabilities, many things end – or rather, they change. Some for the better.

One thing that hasn’t changed is that every morning, I write in my journal and read my Bible – some mornings, I write the happenings of the day before or process something I had read in a book the night before. This morning, I processed what my One Word* would be:

I’ve been thinking about a word for this year, but nothing has come to mind. This morning, Uwe and I slept until 8 a.m. Matthea woke at 8:30 a.m. and has been a demanding tyrant for the past half hour. Maybe it’s because I haven’t had my coffee or sat with my thoughts and Bible – but if this is the outlook for 2025, then I choose HOPE for my word because I am feeling hopeless right now.

  • Hopeless that things will change and get better.
  • Hopeless that my writing will become anything worthy to publish.
  • Hopeless that I’ll make anything of my business.
  • Hopeless that Matthea will ever get to go to a Christian Adult Day program.
  • Hopeless that we will always be stuck in this rut of clutter and chaos.

What a great outlook for the first day of the year. It’s like starting a new book or chapter with marks and tears – making it barely readable, and you just want to throw it in the trash and pick another one off the shelf. But the shelf is bare, and this is the only book on it. It’s yours, a gift from the Lord.

So, hope is needed. Hope to take those tears and repair them, to fill in the pages with resurrection hope…And that can only be done with Christ – the Living Hope.

Hope – in my health, my work, my family, and in the home. I don’t say this flippantly, but because of Christ, there is always hope.

But what does your first day of 2025 look like so far? Do you pick a word for the year? If so, what did you choose?

*One Word – This is choosing one word for the year rather than writing New Year resolutions. The reasoning is that one word is easier to remember and can usually cross into all parts of your life.

**pc: my photo of a candle my oldest gave me a year ago that still makes me laugh every time I look at it.

Book Review: CAREGIVING WITH GRIT AND GRACE by Jessica Ronne

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CAREGIVING WITH GRIT AND GRACE: 100 Days of Hope and Encouragement

by Jessica Ronne

Genre: Devotional

Published: 2024

Summary:

Jessica Ronne is a mother to a child with disabilities, but she is also an advocate for those who find themselves in caregiving roles. She has used her story of being a parent to a child with disabilities but also caring for her first husband as he passed away from a brain tumor to write words of encouragement and hope to others. It is split into four sections using the seasons of the year. She begins with the season of winter because it is a description of how many feel when they first get a diagnosis or realize that life is not going to turn out like they had planned. For many, dreams die. But, as she moves through each season, she points to God who is not only her strength, but also her source of strength. She shares the lessons she learned along the way in each season of life she has been in.

Recommendation:

As a mother to a child with disabilities, I found this to be exactly the kind of book that Jessica advertises it to be. I was encouraged and found comfort in knowing that what I felt at different parenting stages was normal. It is NOT a book for parenting TCKs or living overseas, but I do think that anyone who finds themselves in the throws of parenting will find encouragement amid this devotional. I did give it a 4 out of 5 stars as I would have liked each day to have a reflection question. I find that having a question causes the reader to pause and think about their own life.

*Please note that I earn from qualifying purchases as an Amazon Associate. Please see the disclaimer at the bottom of the page.

Book Review: SERVING AT THE ENDS OF THE EARTH by Steve and Gill Bryant

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SERVING AT THE ENDS OF THE EARTH: Family life and TCKs, 3rd edition

by Steve and Gill Bryant

Published: 2017

*Please note that I earn from qualifying purchases as an Amazon Associate. Please see the disclaimer at the bottom of the page.

Serving at the Ends of the Earth is divided into seven sections. Steve and Gill begin by laying a foundation for what a missionary kid (MK) or third culture kid (TCK) is. They devote a section on transition describing what it is like, ideas to help with re-entry, and even a chapter for those times when a family may suddenly need to leave the host country without warning. Another section deals with parenting TCKs and has a chapter on cross-cultural marriages, which is nice as there are not a lot of resources on this topic. These sections are helpful and bring up some points that would be good for spouses/partners to discuss during all stages of transition.

I appreciated the last three sections of the book. First, one section deals with the heavy topic of dangerous situations and keeping children safe. This section was practical and is something that more and more organizations are becoming more educated in. I was glad to see it in this book as parents also need to be educated and know practical ways to keep their children safe.

The next section was about non-American TCKs. I appreciated this section because much of the literature comes from this background, and it is so good to read about what TCKs from other parts of the world experience. Their experiences are different and the challenges of repatriating or transitioning to university can be tricky. If you work in international schools, mission organizations, or HR departments of companies that have missionaries/global workers from all over the world, then I highly recommend this book just for this section alone.

The book’s last section is near and dear to my heart – educational issues. They discuss the different options, as well as their advantages and disadvantages. Another chapter deals with boarding schools. These two chapters are logical and can really help parents figure out what is best for each of their children. The authors point out that children are different and could need different educational options to help them grow and mature. The last chapter is on special education. Most of this chapter described various impairments, but the last few pages had guidelines for parents of children with special needs and for the sending agency. While I’m glad they included this chapter, I had a lot of questions after reading it, especially regarding their recommendations about MK schools being willing and able to take these students. While one would think it might be true, in reality there are few. But that is for another post at another time.

Though the audience of this book is missionary families and those who work with them, I see benefits to any global mobile family or organization/company that works with them to better understand what families need to consider when making a big move.

Book Review: THE OTHER SIDE OF SPECIAL by Brown, Clime, and Holt

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THE OTHER SIDE OF SPECIAL: Navigating the Messy, Emotional, Joy-Filled Life of a Special Needs Mom

By: Amy J. Brown, Sara Clime, and Carrie M. Holt

Published: 2023

*Please note as an Amazon Associate I earn from qualifying purchases.

This may not be a typical book I would review here because it is NOT about TCKs. (But don’t stop reading. Read the next few sentences before you decide this book isn’t for you or someone you know.)

But it is on another topic you know is near and dear to my heart. Plus, you may know someone in your life or community that needs this book. So, here’s my review. 

The title is a little misleading as it says it is for the “Special Needs Mom.” It’s not just for them; I would include the dads, the grandparents, the older siblings, and anyone who works or cares for families that fit this description.  

The chapter titles are simply the best. Here’s a little snippet:  

  • Loneliness to Connection 
  • Grief to Hope 
  • Guilt to Acceptance 
  • Weariness to Rest 
  • Fear to Trust 
  • Disappointment to Gratitude 

Aren’t they just great titles? The other ones are just as great, too. The authors tell you in the intro that you do not have to read the book in a specific order. In fact, if you are feeling guilty, then just read that chapter. Each chapter is relatively short, so it doesn’t take that much time either. 

It is a Christian book, but it is not preachy. In fact, it feels like you are sitting with the three authors having a cup of coffee while they tell you that they understand what you are feeling. They share their stories of feeling guilty and coming to a place of acceptance (or whatever the chapter is on).  

Living overseas with families like mine is hard. There are not many, so the road can be lonely. Though people care, few understand how hard it really can be. I’m not saying that all days are hard – unless it’s just a season of complexity, and then it can be hard days. What I am saying is that this book feels like a friend. The authors have put words to the aches and joys I have felt over the past several years. 

And while that is all good, I think the most helpful part of the book is that at the end of every chapter, they have given space to process. There are 3-5 questions that make you slow down. Stop and mentally take in what you read and apply it to your life.

A Day in the Life: Graduation Trip

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We have another Senior (Grade 12/ 高三) in our home. Child #2 – our daughter who has Cri-du-Chat Syndrome and attends a local special education school in Taiwan will graduate in the spring. I got to attend the two day Graduation Trip with her and like all the other stories in this series there were lessons learned.

Preparations: Attitude

I got the packing list translated. Thank you Google 叔叔 (Uncle Google). Packed clothes and some extra snacks because you never know. But, the day before we left, I felt my heart racing and tension in my neck/shoulders area every time I thought about this trip. I took fifteen minutes and reflected on it.

I have gone on her other graduation trips, so what was different about this one? What emotions am I feeling about this upcoming trip? What thoughts do I hold that would cause these emotions?

It all came down to not knowing the plan. In my mind I needed to know where we were going; what was going to happen; what to expect. Well, thanks to my husband and Google 叔叔 I learned of the location, but that was it. I then remembered that the last time I went on an overnight trip with her and her class I had a “go with the flow” attitude. I can’t be honest and say that all the tension disappeared, but I can say that I noticed I began taking deeper breaths and relaxing. I worked the tension out with a roller later that evening.

The Trip:

Have a motto

Maybe you’ve heard this saying when you first moved to a new location, or maybe like me you have forgotten it. A friend reminded me of it as she was talking about a recent move and having to remind herself that where she is now is not like where she was previously living.

It’s not bad. It’s just different.

This became my motto for the entire trip.

Asian tour groups are known to have everyone follow the tour guide and not wander off to something that might interest you. They are also known for moving quickly so that you can see everything possible. That way you can get all the perfect photo ops. They are also known for having all the meals planned out in advanced at specific locations. And they help promote buying certain products.

This motto, along with the “go with the flow” attitude, proved to be very useful. For instance, the first day was spent going to three different places of interest. We rode the bus for about three hours stopping for bathroom breaks, of course. Our first stop was a cocoa farm where we saw how they make chocolate from cocoa beans. We even got to see some cocoa trees. We ate lunch there. The food was really good, except for one thing. At the end, we could drop a chocolate into the hotpot (think fish based soup with vegetables). According to my taste buds, fish based-soup and chocolate do not blend well together. But I remembered, It’s not bad; just different – yet I did not drink anymore as I was full from all the food we had eaten.

The second stop on the list was what was translated as an “elves garden.” When we arrived, I realized it was a garden with gnomes. They had some rabbits you could feed, but were not allowed to touch. Well, that proved difficult to avoid with an animal loving daughter. But, I tried. We were only “scolded” once. “Go with the flow” served me well here. They had costumes where we could dress up as gnomes. And as another famous quote goes: “when in Rome…”

From there we drove another hour to a deer farm. We were given instructions on what we could and could not do, then given metal tins with leaves and grain to wander around the lot with deer. They can be quite aggressive for such passive sweet looking animals.

From there was the hotel, where the fun did not stop. After supper they had a DIY project planned and the kids could dress up again. I was ready for bed and thankfully she was too.

Surprises:

With the “go with the flow” attitude, I could handle surprises: good or bad. Like not knowing we would be allowed to swim in the hotel pools and not bringing suits. Disappointing, but we found other things to do the next day.

Or finding out that there is not only a Starbucks at the last bathroom stop, but that they do have your favorite: Pumpkin Spiced. So, I treated M2 to her very first Pumpkin Spiced Frappuccino. Ahh, my little TCK did drink most of it, though she thought it was too sweet. Honestly, I thought so too.

Back Home

We got home and there were two things that I did that helped. First, I had prepared food before we left so I didn’t have to cook supper from scratch. Heat and serve – so easy. And the second, I declared Saturday a Travel Rest Day. We stayed in our PJs, watched movies, and rested all day.

How to Encourage a Family that has a Child with Special Needs

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The African proverb, “It takes a village to raise a child” is a saying that most overseas workers would agree with. We do not have easy access to trusted family members to help us in times of need. We rely on those in our host country to help. I live on the island of Taiwan. For me, it has taken the island to help me raise my children, especially my daughter with special needs. We have lived on the island now for fourteen years. We have made friends in various cities due to my husband’s role, but also because he grew up here.

It wasn’t until we started planning to attend our son’s graduation that I began to think more about this African proverb. We knew our daughter with special needs would not be able to attend the ceremony. She is deathly scared of the auditorium where it would be held. As we tried to plan it out, a couple of friends let me know that whatever we needed, they would be there. That was when I realized that for me it has taken more than just a village, but actually an island, to raise my kids. I realized that in almost every major city on the island there were at least a few families that knew our daughter well enough to help at any given moment. And last year we even had a friend come from a different city to stay in our home for one week so my husband and I could go away for our twentieth anniversary, something we hadn’t done in over ten years. Seriously, that is more than friendship.

I don’t think we are special or have this amazing gift that people want to help. I think that most people want to help, but just may not know where to start. So, I asked some of my other online friends who happen to have raised or are in the process of raising children with special needs outside their passport countries.

To read the rest of this post and to see how you can be an encouragement follow the link to A Life Overseas

Image by Alexas_Fotos from Pixabay 

How the Rapids Showed me Beauty

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Life can be like a journey down a winding river. Rivers can be calm and smooth, but usually along the way rapids appear. Life is like that. Sometimes the rapids are exciting and fun, like moving overseas. Other times they are downright frightening, like an unwanted diagnosis.

During those rapids I find myself wanting and sometimes even desperately trying to paddle back upstream away from it all. I long for an easier way, but usually there is no other way. And in the end, I find that God uses those hard situations in my life to transform me.

Fifteen years ago I found myself at one of those bends.

This week I’m a guest writer at Velvet Ashes. You can read more about my story and the lessons I learned by clicking here.

 

*PC Credit: Free-photos via pixaby

Language Learning and Special Needs…a conversation starter

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RaisingTCKs for Mulitcultural Kid Blogs

My children are bilingual, including my daughter who has Cri-du-Chat Syndrome, a disability that affects her mentally and physically. She’s not the only bilingual person with special needs, though. In fact, I know a young adult with Down Syndrome who is trilingual. And I read about another boy with Autism Spectrum Disorder who speaks at least four languages. This goes against the belief of many educators and therapists that children with special needs should focus on one language only. Most of the research focuses on three specialty groups: Specific Language Impairment (SLI), Down Syndrome (DS), and Autism Spectrum Disorder (ASD), but the researcher still believes that other disabilities can learn a second language as well. This is great news for CCKs (Cross-Cultural Kids) and TCK s(Third-Culture Kids) who have special needs and their families who are raising them.

My daughter is fairly non-verbal, but she is able to communicate in both English and Chinese. She uses American Sign Language (ASL), speaks simple words in both languages, and sometimes uses communication boards. We speak mainly English at home and she goes to a Taiwanese special education school where they speak Chinese. Honestly, like most Third Culture Kids she is comfortable living in both worlds. It’s part of who she is.

But, what about just teaching a child with special needs a new language? Are there any benefits? Join the conversation over at Multicultural Kid Blogs where I share some benefits I’ve noticed.

A Mother’s Day Letter to My Younger Self

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It is the night before Mother’s Day. For some reason my mind traveled to a time period fourteen years ago. I was a young mom about to hear my daughter’s diagnosis. With time wisdom grows. It’s through this wisdom that I wish I could have shared these few thoughts with that mom I was back then.

Dear Younger Self-

I know you forgot what today is, but let me gently remind you. It’s Mother’s Day. Don’t put your head down in shame. I know you’ve lived with your mother for the past several weeks. I know you forgot to buy even a simple card to thank her for her selflessness. For all the drives to the city, waits in the hospital, and the endless cooking she has done for you. I know you wish your husband and almost two-year old son were with you instead of back in China. The hospital visits and tests have taken a toll on your mind and body. It’s a scary place to be. You’ve talked with doctors, and even specialists. You’ve held your baby while nurses have poked her with needles. Yet, still no results. No diagnosis.

Emotions will visit you, strong emotions that will come when you least expect it.

Fear…

Don’t play the “What if” game. It will open wide the door to Fear. But, I know you will. The questions will come at you like quick shooting arrows. “What if she never walks?” “What if she dies?” “What if we have to leave China?” Don’t worry; he gets the best of me still today with his quiet whispers of doubt. Fear wants to consume you, but he won’t. Your daughter will get the diagnosis you don’t want to hear – Cri-du-Chat Syndrome. Your mother will be next to you in that small room in shock. Maybe it is a mother’s instinct, or maybe not – but you won’t be shocked because deep down you already know. Your world will be shaken though. Your baby will need a feeding tube. You will feel like all the air was taken from your lungs. Sit tight – the God who created that bundle of joy topped with red curls already knew. He’s not surprised. So, just breathe – in and out, in and out. You will feel like waves are pummeling you to the bottom of the sea, but dive deep into those waves. It is there where you will find peace. Dive deep into the peace that passes all understanding, the peace that comes from our Lord Jesus Christ. Just breathe.

Grief…

Grief will come, in fact, she already has. This Mother’s Day you will grieve for that child you thought you knew. You will cry hot tears that seem to never run dry. They are tears of healing. Release them. Let them wash over your face while they wash over your heart. I wish I could tell you that Grief eventually exits your life, but I can’t. She will come back when you least expect it. Fourteen years later, she still visits me. When I see other kids in middle school laughing with their friends at the local 7-11 or tying up their shoes about to play in a soccer tournament, she comes back. My throat tightens and my eyes begin to drip tears. And there she is. Grief dressed in black. I’m learning that Joy can accompany Grief. It is those times I offer gratitude and praise that Joy is also there. I give thanks for what Matthea can do and I praise God for his many blessings in our life. So, as you grieve this Mother’s Day know that “joy will come in the morning.”

Loneliness…

This Mother’s Day you will feel lonely. Uwe and Marcus are miles away. You feel like you are the only one going through this, yet you know that is not true each time you enter the hospital. But, Loneliness comes and tries to squeeze out those in your life who love you. Don’t let her. Remind yourself that you are not alone. God is there with you. Your family is there. And remember your friends just drove a few hours to spend time with you. They are praying for you. Don’t let Loneliness crowd out the others.

Guilt…

Yes, you will feel guilt. Guilt will overshadow Grief. Guilt will remind you of friends who have lost children. Guilt will point a finger and say, “You’re child is living. Why are you grieving?” You won’t really know what to do with Guilt. You will try to hide Grief, but it will still be there. I want to give you permission to block Guilt out of your life. You have permission to grieve. This diagnosis is hard. There are a lot of unknowns. It is scary. So, don’t believe Guilt. Pray for those friends and be sensitive when you talk with them, but don’t bow down to Guilt.

Hope…

You may not feel like there is any hope right now, but she is there. Hope will come pouring in when you find out that you can go back to China. Hope will come when you gain confidence in using the feeding tube. And even this day, Hope will come in a form of a Mother’s Day gift from your sister. A small cut rock that says, “A Mother’s Love begins long before we can remember…And brings us Warmth and Happiness We Never Forget.”

Give yourself some grace today. Your love for your children comes through. I can’t tell you that everything is perfect and life is like a rose garden. Life isn’t easy. I mean whose life really is easy, huh? But, life is good and full. I can’t tell you all the great things because you need to experience some surprises in life.

I wish that the decade older version of me would send me a letter like this. I sure would like to know how these teenage years turn out.

Your loving “more mature” self,

MaDonna

Raising Children with Special Needs When You Live Overseas

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Forest, Hope, Radiant, Zen, Sunflare

“Your daughter has a rare genetic syndrome called Cri-du-Chat Syndrome, and she needs a feeding tube.”

My dreams, my desires to live overseas, seemed to shatter with that diagnosis. The past 10 months all made sense. This was the reason she was hospitalized in Beijing for bronchitis at 3 months old. This was the reason for choking almost every time she nursed. And this explained why, just a few months before, she lay limp with pneumonia on a large hospital bed in the middle of China next to six other children with some sort of lung infection. All of this led to me flying alone with her to the U.S. for medical tests. This was the reason I sat in that small clean consultation room with a doctor I barely knew.

Was this going to be the reason God would end our time overseas?

And then the haunting question, How am I going to tell my husband Uwe half way around the world on the phone?

To date, that was the hardest phone call I have ever had to make.

When Uwe and our oldest son (20 months) arrived in the U.S., we believed our time overseas was over. At that time we only knew of one other family living overseas with a child with special needs, but our daughter seemed to have more medical issues. As we consulted with surgeons, therapists, and doctors, not a single one hesitated to tell us to go back. This was incredible to us because we, like so many others, didn’t think it possible that families affected by disabilities could live and work overseas. So with a list of diagrammed exercises, extra feeding buttons and bags, and a feeding machine, we returned to China. Uwe went back to work as principal at the international school, and I began therapy with Matthea. Life changed, but God had not. He was still good. He was still providing.

Our story isn’t unique. There are others like us. Last week I was able to interview eight families ministering overseas who also have children with special needs. All of our stories seemed to share the following three themes.

You can finish reading over at A Life Overseas.