Shortly after “Ruth” turned 18, several significant things happened. She met the teenage boy that would capture her heart and run up her phone bill. She didn’t know it at the time, but she would marry that boy. She was in college and firmly decided on a major. Ruth...
I took my seat at the gray colored table with a plate full of Thanksgiving foods. There were mashed potatoes, turkey, corn, and bread filling my plate. My young son opted for cheese pizza. Of all the choices in the hospital cafeteria, my son decided against the...
I vividly remember the moment the pediatrician gently told my husband and I that our newborn was not the picture of health we envisioned. Just hours after her birth, I was resting in the hospital bed dressed in a stylish oversized gown. I was counting down the hours until we were discharged with only normal, first-time parent worries crossing my mind. Then, everything changed.
When people find out that I am a pediatric speech-language pathologist and the mother of a child with Down syndrome, I am often asked about the order of these life events. Did my daughter inspire my career or was it a coincidence?
Age 18 seemed so far away for so long for my firstborn. Yet, a few months ago my daughter blew out 18 candles on her birthday cake. The banner behind her declared her 18th birthday as well, in case I needed another reminder. This birthday marked her change from childhood to adulthood.
Evana Sandusky writes about her experience receiving correction as a special needs mother, and explains why gentle correction may be more important than we think.
Over the years, I have been through multiple seasons of planting and harvesting skills with my daughter. My daughter is now entering adulthood with disabilities. There are still skills that she needs to develop to make her life easier. The learning does not stop as she ages, however, the pressure I put on myself all of those years is gone. I don’t need to fix issues. I simply need to support her through them. Evana Sandusky writes on her daughter’s growth through the years and likens it to planting seeds and yielding the harvest.
Evana Sandusky shares about her daughter Jaycee, who has Down syndrome, but is so much more than what people often assume. Happy world Down syndrome day!
Evana Sandusky writes on her daughter’s joy, and how she is inspired to find joy and hope in her own situation.
Evana Sandusky writes on the fears and faith she has for the New Year, as she reflects on a trip to buy a 2024 Yearly planner.
No one on this earth knows how to give better than a mother. Mothers are experts on giving whether your child has special or medical needs or not. Mothers, I urge you to take time to give back to yourself in this Christmas season, to replenish your spirit. Here’s how that might be done.
I would like to drive up to some magical office building and order into a speaker, “Yes, I’d like to order an easy day for my family please.” Then my daughter, if only for a day, would have a fully functioning heart and lungs. Many healed in the Bible, while healed in a moment, suffered for long before. This gives me hope to press on another day, and to keep praying for the Lord and His healing.
The first time the engine-shaped glowing light appeared on my car’s display, I took notice. But over time, I learned to ignore the light all together, until my car suddenly needed a new transmission. Parenting a child with special and medical needs has triggered all sorts of “warning lights” in my brain and body. Here’s how I learned to deal with these warning lights in healthy ways.
News of my daughter can be especially hard for me as I have poured my heart and soul into taking care of her. Yet, God should be my ultimate pursuit. If I chase after him when things are falling apart, everything else should fall into place.
What questions should your teachers know to ask when a new child with disabilities is dropped off at church? In an ideal scenario, teachers would have time to sit down with the family and come up with a strategy that best suits the individual. But Sunday mornings are not always full of ideal scenarios! Evana shares what teachers should ask in a brief drop-off exchange.
When reflecting on our wedding day, I remember the joy and hope in those two young people. The future was ahead of us. Many plans and dreams filled our minds, but neither of us could imagine the reality to come.
Through all the unexpected twists on my motherhood journey, I am grateful for my relationship with God. I have needed wisdom and help that cannot be found in friends, articles, or books. My relationship with God has been vital in keeping me focused and able to face each new challenge while rearing my daughter with special needs.
As soon as I woke up, my body revolted. My hip somehow fell out of place again, making each movement painful. It’s a bizarre situation for a caregiver to find herself in. I am not supposed to be the one who needs help. For me, caring and giving happens regardless of how I feel. As Jaycee grows, I see now how we can help each other.
Jaycee is a person with Down syndrome. Not everyone with this diagnosis will be exactly like her. For World Down syndrome Day, I encourage you to get to know those around you who have Down syndrome. You may be missing out on an opportunity to meet a person who can enrich your life with friendship and love.
My daughter’s heart has never been normal. Throughout her life, Jaycee’s cardiologists have done their best to treat her heart defect. We tasked ourselves to cover Jaycee in prayer.
After an exhausting day of solo parenting in a new city, Evana had a chance encounter with another caregiver that changed her perspective and gave her hope.
Christmas is one of my favorite times of the year. I enjoy decorating our home and setting up the Christmas trees. I love unboxing our ornaments and placing them on the tree. Each ornament displays different aspects of our life as a family over the years.
Thanksgiving reminds me to be grateful in all seasons of life. Over the years, there have been seasons when I have been overwhelmed and frustrated with the daily medical interventions. God gently reminded me that the very things that sometimes feel irritating are the things I should be grateful to have for my girl.
I stood in the middle of a cornfield with my daughter, surrounded by brown cornstalks towering over our heads and the dry, dusty earth beneath us. I panicked for a moment. I was alone in a corn maze with my daughter, armed with my poor sense of direction to lead us out.
My family sits near the back of the sanctuary in the church. I feel safe in the back, where we might blend in and not disturb anyone. I find myself so worried about my daughter and the people around us that I tune out the sermon altogether. Ironically, I am in church fretting over something like this. I have to trust that the people in our congregation will have grace for my family.
This month, schools will open their doors to begin another year of academics. There can be a dozen anxiety-producing scenarios that my mind can create when “new” enters our lives. In these situations, I have two options: I can sit under my stress or I can pray.
Summer with my family is a nice break from all the school year hustle and bustle. It’s a time to slow down and enjoy more family time. Then again, summer brings its own challenges. Here are some tricks I’ve learned in the past few years that help me stay mentally in a better place for a peaceful summer day.
In our family, there are some things that daddy just does better.
On Mother’s Day, I want to take time to reflect on beliefs I have as a mother. With God, I can have a hope for my future in mothering.
Sometimes things go great in your special needs ministry or class. Then there are other days when things do not go as planned. What do you do when things go wrong? Here are some principles that guide our ministry decisions.
March 21st is World Down Syndrome Day (WDSD), a global awareness day for those with an extra 21st chromosome. Based upon my experiences of a now 16-year old, I would like to offer three ways that churches can better support families like mine, no matter the age of the person with Down syndrome.
When our church, The Roads Church, located in Southern Illinois, decided to start a special needs ministry a few years ago, we were embarking into unfamiliar territory. Here’s the process we followed that may work for your church, too.
For the most part, anything with the word “new” in it does not go over well in my family. No matter how uncomfortable it is for us, January 1st brings a new year.
When I was in grade school, my older brother told me a secret. “Mom hides the Christmas gifts in a garbage sack in the closet,” he confessed. I don’t have to worry about my daughter with Down Syndrome pulling some of those shenanigans that I once pulled at Christmas. But like me, she loves Christmas, and it is such a joy to experience this time of year with her and her brother.
Most Thanksgivings, the spread at our family meal is nothing short of fantastic. Whenever I leave the family gathering on Thanksgiving, I always go away with a full stomach, and don’t bemoan the dishes that I did not want to try. This year, I want to take that perspective with my gratitude.
I started dreaming the day I found out I was having my first baby. As we made preparations for her birth, I enjoyed reading different pregnancy books. By the time we took Jaycee home from the hospital, I had armfuls of pamphlets, books, and resources on Down syndrome. I read as much as I could to find answers to many questions, and here’s where I found them.
My son’s birth was filled with happiness, but the previous 48 hours were complete stress. Shortly after my daughter’s stressful birth, my husband turned another year older. Here’s what we have chosen to do when pain and joy have intersected in our parenting life.
The first day of school for my children is marked on our August calendar. Back to school means I have several preparations to make. While the children need many physical supplies, I need to pray about and look to God to help me with the things I need.
I’m doing a bad job, or so I’ve been told. I don’t always juggle my responsibilities well. But as I come to the halfway point in our summer vacation, I want to remember to enjoy this time, and silence my harshest critic.
Some individuals with limited speech may use AAC (augmentative and alternative communication) speech-generating devices. For roughly 7 years, my own daughter with special needs used a speech-generating device to communicate when she was nonverbal. Here are five ways I used my daughter’s device to aid her spiritual development and increase her participation in our faith.
My daughter is a gifted communicator even though she rarely speaks in sentences. “Mom” is one word that has a multitude of meanings. There’s one version of my name that I hate hearing, the one that conveys to me that she is upset or scared. As she yells “mom,” I often cry out to God in those moments, too.
I grew up in a small, charismatic church where long, eloquent, and unique prayers were the norm. But having my child with an intellectual disability and limited verbal speech made me understand the need to make recited prayers more commonplace. Here are three benefits of using recited prayers in special needs ministry and in families with special needs.
All life is God-given and is to be celebrated. There was a time long ago that I lost sight of this perspective. God patiently waited for me to look past the words of a diagnosis to see my daughter for who she was created to be. On this World Down Syndrome Day, I appreciate all the time I have spent raising my child with Down syndrome.
Scripture is a fundamental part of Christianity. When our church launched a special needs ministry a few years ago, I wondered how we could incorporate scripture into our lessons while making it understandable for those with Intellectual Disabilities and limited speech. Here are five ways to embed scriptures in your special-needs ministry.
Online gatherings are still the norm for many church ministries. Our church has been providing Zoom meetings for our small special needs class for several months. Here are three ways we have engaged our students during online classes.
This year has required endurance. There were many stressors in 2020 that individually would have been difficult enough for most people. There have been several events this year that have led me to cry out for things to be different, normal, or better. Yet in prayer, I have felt God ask me one question: Are you ready to endure even more?
Everyone wants the Red Sea moments, an unmistakable miracle. But God doesn’t do only big signs and wonders. He is in the small things too. Whenever I find myself in a challenging situation, I look for God. I live in the mindset that God is around me and wanting to reveal Himself to me.
I am no stranger to struggles as someone raising a child with special and medical needs. It is easy for me to downplay the degree to which I am mentally struggling. But I now see that when I claim to be fine when reality suggests otherwise, that’s an unhealthy denial. Here are four signs that my struggles are not “fine,” and some things that have been helpful for me, when I acknowledge these symptoms.
My father, brother, and nephews possess much knowledge to grow soybeans, wheat, and corn, but some vital aspects of farming are out of their control. Similarly, my husband and I plan and plot care and opportunities for our daughter who has developmental disabilities, but there are some things out of our control. We wait, pray, hope, and support our daughter, until the time when we reap what we have sown into her as a child.
There are an overabundance of decisions to make in life right now. For many people I know, school decisions are presently giving parents much to ponder. Some parents are admittedly terrified of making the wrong decision for their child. Here are four things that my husband and I do when we are faced with difficult decisions.
The cloth masks we wear to protect against COVID-19 obscure our faces. If people are smiling around me, I cannot tell. As soon as it is safe outside, I rip the facial mask off. I take a deep breath and feel instant relief. My state requires facial coverings while out in public, and I am not sure that I will ever get accustomed to them. But there are some invisible masks I am more than comfortable wearing.
Online church has been wonderful, but there is nothing like being in a church service. Though I cannot wait to go back to church, it will not be anytime soon. As you gather together in church to sing and pray, please remember that not everyone is there with you.
The quarantine events in the past few weeks have presented new challenges. My daughter’s health, which is usually the major trigger for me, was no longer the cause of my stress. Instead, life’s drastic changes overwhelmed me. The sudden changes to my familiar routine put me in old battles with stress and eating.
Leaders in the church who educate children about God are vital to families. For many of us, these church leaders are presently not in our children’s lives, due to crowd restrictions with COVID-19. But faith and understanding about God can occur naturally, if a parent takes a few small steps. Here are three suggestions.
My daughter is many things to different people. Her Down syndrome says something to most people even when they don’t know her. But to me, there’s one attribute that best describes my daughter. She is the most loving person I know.
February 14 is the date to celebrate love in the hearts of two people, and it’s also Congenital Heart Defect Awareness Day. Initially, our daughter’s heart diagnoses came as a shock. My husband and I didn’t know how to process the diagnoses and the treatments. Years have passed, and we now have a healthier perspective. Today, I share three truths I discovered as a mom of a child with a CHD.
There are some things in life we need to lose in order to gain in other areas. When parenting a child with special and medical needs, it becomes vitally important to reflect on how we are living, areas we need to improve, and discover ways to better ourselves.
Jaycee’s Down Syndrome and medical conditions have influenced the relationship between her and my son. While Elijah is younger, he often acts like an older brother. He looks out for her even though she is bigger in size. They understand each other, even with her limited speech. So I wasn’t surprised by my son’s recent choice of a Christmas gift.
The problem I seem to have in trials is that I want them over with quickly. The end of the trial seems to be the focus of my prayers. Then one day, a friend prayed with me in a way I never had.
My daughter has been hospitalized many times for recurring lung infections. Now, whenever my daughter has a little cough, fear swells up in me. Surely, anyone in my situation would feel this same way. I try to justify it, but it doesn’t make such fear right.
For families like mine, special events are not always easy. It may look like an ordinary entrance to anyone else, but for us, it is one brave step after another.
Support from others is great, but I learned early on that I have to find ways to encourage myself. I have to take ownership of my own mental wellbeing and emotions. When I am feeling down, I can’t rely on others to pick me back up. I can’t wait for my pastor to show up to pray; I have to find strength to pray.
I felt awkward. I couldn’t join the conversation several other church volunteers were having about their children’s accomplishments. After one night of serving and feeling a mix of emotions, I felt impressed to examine myself in prayer. Why was I allowing this to get me down? This wasn’t a reason to quit serving at church or shrink my circle of acquaintances, as I have done in the past. It was, however, an opportunity to push into God and thank Him for the things my daughter had accomplished.
My husband has held many things together for our family. Most of what my husband does for our family isn’t the typical experience. There’s no greeting card that summarizes his journey as a father or recognizes the care he provides. It’s been different than most, but it’s been good.
Before you start selecting signs at random, think about what your ministry needs and start there. What do you hope to accomplish with the signs? Non-religious signs may help the children better understand what you want them to do, and could possibly be more helpful for classroom management. If you hope to encourage more participation in worship for those with limited speech, adding signs to songs may be a good starting place. Still another area of focus may be teaching signs based off of the main vocabulary of your lesson.
I had an ambition to teach my daughter to pray even though her spoken vocabulary was limited to a few words. I broke down the act of prayer, employed some well-known speech therapy techniques, and began helping her develop her own prayer life. Like many other skills we have worked on in the past, this took time and repetition, but my daughter learned to pray.
As a parent of a child with special and medical needs, I want people to approach me in prayer with extreme sensitivity because people can’t fully understand all aspects of my situation.
Prayer is powerful. I think because I have the option to pray anytime by myself that I forget how important it can be. I should know by now that if I don’t feel like prayer, then that’s a sign I need it most.
In the Bible, God asked Adam and Eve, “Who told you that you were naked?” Similarly, I sensed God was asking me, “Who told you this life wouldn’t be good?” Certainly it wasn’t Him.
The holiday season often brings about special events in churches. From live dramas, choirs, dinners, and parties, there’s a variety of activities that local churches host to celebrate Thanksgiving or Christmas. Will the local church include all members and their families during these celebrations?
I felt odd as we repeated the speaker who led the chant, “Something good is going to happen to me.” I don’t think I have spoken those words in years.
After my daughter was born, I experienced how Christian people view and treat those with a diagnosis. It seems that I have encountered 3 strong views among people. Some of these have resulted in positive experiences and some negative.
As I dropped her off at her class, I felt completely overwhelmed and wondered what in the world just happened. Jaycee had been totally confused by the whole ordeal but was glad to be in her familiar classroom. I was in no shape for a church service mentally. I was exhausted.
As someone who has been homebound for weeks and months at different times with my daughter, I can tell you that a homebound family faces many challenges. The isolation and lack of real support can create a sense loneliness and loss of connection. Members of the church can change that with a little effort and giving!
There are some simple strategies you can use to help you effectively communicate and explain baptism to a loved one with disabilities.
This year, I won’t allow the thought that I’m missing something bother me on Mother’s Day. I’m lacking nothing. I won’t allow the expectation of a certain day to tell me otherwise.
I know there’s hope in our future because of God. It is God who helps me see my daughter for who she really is when others try to tell me differently.
Sometimes it is tough to the see the bright side. It’s hard to be positive in a challenging situation, but doing so allows me to see the tiny ways God is working in my life. When I look on the bright side, I allow hope to grow and crush those seeds of discouragement.
If there are any other families out there sitting at home with their medically fragile child when they would normally be worshipping in a church building, then know that you are not alone.