On a hot July day in 1995, my husband and I drove on busy I-285 to Northside Hospital in Atlanta. I was very pregnant with our second child, and my doctor scheduled me for another Caesarean birth. It was two weeks prior to my due date. His reasoning may have been twofold, as he was also traveling abroad on vacation. We were excited to soon be able to hold our precious new bundle.

“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” Jeremiah 139:13-18

July 20, 1995, our beautiful 9 1b, 13 oz bundle entered the world. Her dad named her Kendra Danielle. Her brother Lance was overjoyed to hold his baby sister for the first time, happy to have a playmate.

When Kendra was around 3 months old, she and Lance took their first professional portrait together at Olan Mills. As was our tradition, he helped to choose Kendra’s outfit for the occasion. Her dress had a large, white collar and was trimmed in white lace at the bottom. Lance chose white, lace stockings and black, patent leather shoes. He was so proud and protective of his baby sister, always talking and singing to her. She gave him her undivided attention, as if the sun rose and set for him.

At two and a half years old, Kendra became ill for the first time. For several days, she was fussy, displayed low energy, had fever and runny nose and wasn’t interested in eating. No matter what we did, she did not improve. She was diagnosed and treated for Respiratory Syncytial Virus (RSV). I was used to managing asthma, as Lance had a flare-up about every three months since he was a year old.

Though it was never confirmed, when Kendra recovered from RSV, she was not the same little girl. I noticed that she no longer was talking or engaging with us. She seemed sad, cranky, and stopped playing with her brother. After days of silence, she was pulling at her ears and repetitively touching the back of her head. She also kept sticking her fingers in her mouth, as though she wondered why she could no longer create sound. My smiling, fun-loving, playful little girl had become whiny and frustrated, even biting me on the arm.

Her pediatrician diagnosed her with double ear infection. When I mentioned that Kendra hadn’t spoken for several weeks, the doctor handed me a piece of paper with phone number to call. Little did I know that our world was about to change.

“Before I formed you in the womb I knew you, before you were born I set you apart; … Jeremiah 1:5

Our next visits with teams of doctors and medical staff resulted in a diagnosis of autism and a developmental delay. Since that time, life with Kendra has had its ups and downs, joys, pain, sorrow, loneliness, grief, and triumphs. Despite her challenges, Kendra has displayed a joy for living, strength beyond measure, endurance, tolerance of others, and a love of simple things.

“Many persons have a wrong idea of what constitutes real happiness. It is not obtained through self-gratification, but through fidelity to a worthy purpose.” —Helen Keller

In the years since, I’ve learned so much I never could have imagined, met amazing parents and professionals I might never have crossed paths with, done meaningful work, connected in the community in ways I wouldn’t have thought possible, and truly come to understand what it means to love unconditionally.

Despite prayers, education, plans, therapies, and other efforts, Kendra has remained a person with a disability. She could not be more loved and valued. Her irresistible smile and tenacious spirit are unmatched. She teaches us to value life; the good, the bad, and the ugly. She is anything but common and regular. She is set apart and loved beyond measure. I am honored to have been chosen to be her mom. She is My Girl.

Happy Birthday, Kendra.

Thank you for reading my stories, as I continue to share all I’ve learned through raising Kendra. Please feel free to ask questions, share your thoughts, and share this newsletter with others.

Yesterday, I sat to gather my thoughts about why we recognize fathers and give them a special day. In 1908, Grace Golden Clayton, proposed the day to honor men who had died in a mining accident in the United States. Though it was not accepted then, Sonora Smart Dodd, who along with her five brothers were raised by their father, convinced the Spokane Ministerial Association to celebrate Father’s Day nationwide. Today, the tradition is recognized in many countries and families, in their own way. (en.wikipedia.org)

As I thought about the men who shaped my life and the lives of my family, they include my father, uncles, and brothers. Men play an important role in establishing healthy, emotionally stable families.

When I was a little girl, I thought my daddy, Jake Walker, was stronger and braver than any man alive. Though small in stature, my father moved with confidence and was tall in any crowd. A man of wisdom, he was smart, energetic, funny, and always giving of himself to others. A man of faith, Jake embraced life through difficult times, as well as good times. As best he could, he shielded me and my siblings from the turbulent times that we were growing up in. Rather than concentrate on what we weren’t allowed to do in the turbulent 1960’s, my father exposed us to the things that were possible. We visited other states and stayed in hotels, during a time when not many people traveling looked like us. Sometimes, my dad was pulled over by state patrol, just to inquire whose car he was driving and where he was going. I listened as the officers would address my dad as “Boy” and yet he would keep his cool and respond in a calm voice. Once they could find no reason to hold him, my father would drive away with dignity and remain as cool as Obama. Though I’m certain he was moved by such behavior, he demonstrated to his children how to respond to and manage conflict.

Daddy was fearless and determined to live in a way that pleased God. He always reminded us, “Whatever you do, do it unto the Lord and not for man that you should boast.” He enjoyed working with his hands and was always willing to teach others. My brothers still share stories of spending time with our father and the impact he madein their lives.

In 1969, he and our mom loaded us into the car and went house hunting in a neighborhood that was just starting to integrate. We were so excited when we stopped at a house on a corner lot, displaying a large FOR SALE sign. Dressed in his starched white shirt and tie, Daddy stepped briskly up the walkway wearing a smile. A woman met him before he could get close and said, “I’m sorry, but we are not selling to “Ni——s.” My father’s demeanor didn’t change. Calmly he replied, “Thank you,” got in the car and drove to a community about five minutes away. This time, when he got out of the car, the seller invited our family inside. That house became our home and remained in our family for the next 54 years.

Thank you, Daddy. You demonstrated to us how to love, serve, be gracious, show kindness, give back, grow in wisdom and strength and take responsibility for our actions. You never backed down from a challenge and believed that you could accomplish anything you set your mind to. To this day, I still meet people who share stories about how you inspired them to be better. Though you’ve been gone for 34 years, I still hear your sweet, calm voice and feel your presence this Father’s Day.

From the time they were young boys, my brothers worked alongside our father and learned the bricklaying trade. The time they spent with our dad taught them much more. They grew to be men of value, caring for and loving their families. They respect mankind and give of themselves to create better communities. They are the uncles who make time for our younger generation, teaching and sharing their wisdom, inspiring them to aim high. Happy Father’s Day, Brothers. You are the best!

My husband, Emory, continues to amaze me. His love and commitment to me and our adult children are unmatched. When we met, he spent hours in the gym and had an impressive physique. Later, we were raising an asthmatic young son and a daughter with a developmental disability. Emory never shied away from helping out and allowing me space to care for my own needs. When our two children were young, he stayed home and cared for them while I signed up for workshops and traveled all over the state to learn about living with and caring for someone with a lifelong disability. He never complained but has done his best to be whatever we needed.

Had it not been for my husband, I could not have done the things required of me. He continues to stick by my side and support me. There is nothing I can ask of him that he won’t attempt to do. His dedication to our family and the strength he provides is more than physical.

Happy Father’s Day, Emory. You remain our rock.

I, Too by Langston Hughes

I, too, sing America. I am the darker brother. They send me to eat in the kitchen when company comes, But I laugh, and eat well, and grow strong. Tomorrow, I’ll be at the table when company comes. Nobody’ll dare say to me, “Eat in the kitchen,” then. Besides, they’ll see how beautiful I am And be ashamed__

I, too, am America.

To all fathers who are doing your best to love and care for your children and families, I wish you the best all year long. You are beautiful, you are America.

Note: If you are the father of a child with disabilities, you may find this website helpful: 21stcenturydads.org

“We can make our plans, but the LORD determines our steps.” — Proverbs 16:9

Before I share topics relating to planning for transition, I should explain how I arrived at this unique place. In February, I shared a poem, Welcome to Holland, by Emily Pearl Kingsley. As the poem explained, while awaiting the birth of a child, we envision a healthy baby who will bring us new adventures, hope for their future, and joy filled moments. Sometimes, we land in a place different from what we visioned and must remain there.

During our pre-baby years, my husband Emory and I enjoyed many usual things that single couples do. During the 70s and 80s, our weekly hang out after work was our local gym, him building muscles that many envied and me doing high-intensity aerobic dance classes, water aerobics, and step aerobics. When we weren’t at the gym, we were checking out the latest box-office hits. I can recall the very first Star Wars in the year we were married, 1977. How could we have guessed that Han Solo, Luke Skywalker, Princess Leia, Darth Vader, Obi-Wan Kenobi, Yoda, Chewbacca, and Lando Calrissian would still be a part of our world today? During the 1980s and 1990s, there were many other movies that gave us reasons to feast on buttered popcorn: Jaws, Glory, Color Purple, Karate Kid, Ordinary People, Scarface, Big, E.T., Driving Miss Daisy, Places in the Heart, and Coming to America… the list is endless.

We galivanted across the South, cheering our favorite college basketball and football teams, exclusively Georgia Bulldogs, Miami Hurricanes, and Georgia Tech, in that order. I’m not sure how we still found the time to make it to our favorite high school basketball tournaments, too. Even so, we were quite involved in our local church.

Though we always planned for children and did all the things required to have them, our first child, Lance, was born March 14, 1993. Looking back, we should have named him Storm. He was born on what is still considered the most impactful snowstorms in Atlanta, called “Storm of the Century.” Thankfully, the hospital was located one exit from where we lived, and we made our way through 4 inches of snow in the one lane of the highway that was partly cleared. Regardless, we were over the moon with joy and excitement over our arrival.

At one year old, Lance accompanied my mother and me to Frankfort, Germany to visit my brother who was serving in the US Air Force. He barely slept the entire nine hours we were in the air. We did all we could to keep him occupied and not disturb the nice man behind us. By our second night in Frankfurt, my child started taking short, shallow breaths. It was frightening to hear him struggling to breathe and we discussed taking him to the hospital. My brother assured me that Germany’s hospitals had excellent physicians. Our mom said, “Let’s pray for him before we take him anywhere.” I kid you not, a little later he was breathing normal and back to his playful self. We attributed his episode to the change in climate and being enclosed several hours at high altitudes.

After returning home, my husband and I began preparing to move into our new home. Days after moving, as my mom was helping to unpack, she suffered a stroke. With caring for my young son, my mother, and moving, I didn’t pay attention to what was happening to my body. At the insistence of my sister, I bought a home pregnancy kit. We were expecting our second child.

Two years passed quickly. Lance was a lively, happy, and outgoing toddler. We had as much fun as he did, watching him play at the kiddie park, sliding over and over and over and greeting everyone we passed. Emory and I planned a weekend getaway at Myrtle Beach, just for the two of us. We were so in love with our son that we ended up taking him along, too. As his dad was carrying on a walk along the beach one evening, Lance began to wheeze and gasp for air. By the time we returned to our room, seemed better and slept during the night. Since it was the second time he’d shown signs of labored breathing, I was concerned but he otherwise was a healthy, playful boy.

A month before delivering my second child, Lance was hospitalized in the Intensive Care Unit (ICU) with asthma and pneumonia in both lungs. Staying overnight, I rode the elevator to every floor of the children’s hospital, searching for a place to rest. Every waiting room was packed with parents, their faces etched with worry and fatigue. I laid my huge belly on the cold, linoleum floor outside of the ICU so that I could stay close to Lance during the night. My jacket and purse served as a makeshift pillow. I slept like a baby, in between visiting Lance in the ICU. The people who passed avoided stepping on me, acting as if it was normal to see a woman sleeping on the floor.

Thankfully, at the time, I didn’t know that Lance would suffer with chronic asthma for the next ten years. Albuterol, Prednisone, nebulizers, inhalers, intravenous lines, ICU, emergency rooms and hospital food would become a part of our lives. I didn’t realize that the strength required to support my firstborn would be called on again for my second child.

“You never know how strong you are, until being strong is your only choice.” — Bob Marley

Though it’s been 30 years since Kendra was born, I still get emotional sharing her story. However, it is worth sharing. Join me for my net video coming soon.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this….

When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David.

The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plan lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?” you say. “What do you mean Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t take you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills…and Holland has tulips. Holland even has Rembrandts

But everyone you know is busy coming and going from Italy…and they’re bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very very significant loss.

But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

Over 30 years ago, when our beautiful daughter entered the world, her life began similar to that of our first child. Two and a half years later, her diagnosis of autism and a developmental delay took us on a journey we hadn’t planned and didn’t feel equipped to handle. Since that time, Kendra has taught me more than any book or classroom ever could. She introduced me to my life’s calling, given me new purpose, new friends, a community that I may have never known. My dreams for the future include her and others like her. We Keep Hope Alive that there are more new, lovely, and special things to discover about our adventures to “Holland”.

“Love your neighbor as yourself.”—Mark 12:31

This February, as we celebrate Valentine’s Day, it may be easy to recognize and love those we cherish. However, our effort to love others outside of our relationship circle may take being intentional.

Who is my neighbor? They may be anyone I encounter, regardless of their age, sex, race, religion, sexual orientation, or social status. They do not have to live in my neighborhood to be called my neighbor. A neighbor could be someone in need of my help. A “neighbor” may be a person who just needs to be recognized with a hello, a wave or a smile. My neighbor doesn’t need to know me or agree with me. The command to love my neighbor does not mention that they will love me back in return.

Can you imagine what it would be like if we decided to show more love and not worry about if it is reciprocated?

For the month of February, I wrote the following story for a monthly column that I contribute to for an online magazine, Inspirations for Better Living. I thought that it would be appropriate to share here, as well.

How do I Love Thee?

Years ago, I spoke at an elementary school, to parents who had children who were eligible to receive special education services. Like my daughter, their children received instruction in academic settings that included support for individuals with autism.

The meeting took place in the school’s Parent Center and it was completely packed. I was there to share information about funding sources, leisure and recreational opportunities, support groups, as well as other community resources.

Whenever I speak with parents and families, I usually intersperse my speech with humorous stories about our daughter, Kendra, and some are not so humorous. Though Kendra does not use words to communicate, she is creative in the ways in which she makes her needs and wishes known. She has a sense of humor and when she laughs, it makes others laugh, too. She keeps me supplied with interesting stories to share.

As I spoke of Kendra that day, I shared about her being a cheerleader on a team that cheered at basketball games played by children who had disabilities. When she first started on the cheering squad, while the other girls were cheering, she would be picking up any small items she detected on the floor. Her obsession with picking up every object she perceived as trash would kick in and she was not able to concentrate on cheering until she cleaned every speck. That brought smiles and nods, and I knew parents related to my story. I told them that by mid-season of basketball, Kendra started cheering along with her teammates. Her favorite routine was the Chicken Dance. With an audience of mostly parents watching, it brought us joy to watch our young ladies clapping hands, flapping their arms, and twisting down to the floor, although they did not do it all in unison to the beat of the music.

Kendra also played on a baseball team created to support the needs of those who were differently challenged. Though she would hit the balls pitched from a switch adapted pitching machine, she was not interested in running the bases. She would take her time walking to each of them. That is, until her coach recruited a male high school baseball team to volunteer. I did not know that she could run so fast until one of the players ran alongside her. She started running all the bases, making her way to home plate, with a huge smile on her face.

I spoke about the importance of finding opportunities for our children to make friends and be recognized for the gifts they bring to others.

What I did not know during my presentation was that the middle school daughter of the teacher who invited me was present. The young lady (call her Deb) sat under her mom’s desk the entire meeting and I never even saw her.

The next day, the teacher called to tell me that her daughter listened as I spoke about Kendra and asked if she could meet her. She mentioned that my affection for my daughter touched her child. It was not until that moment that I understood that my love for Kendra was reflected in the way I spoke about her.

We scheduled a date for the two young ladies to meet. A school nearby was hosting a prom for students with disabilities who were in middle to high school. Deb agreed to accompany Kendra to the dance. When they met, I could tell that Kendra was comfortable with Deb from the start. They proceeded to the dance hall, while I joined other parents in a space designated for us. We had the chance to talk, eat, and peek in on our children on the dance floor.

It was a humbling feeling to witness the patience, kindness, and calm in which Deb treated Kendra. When I spotted them together, they were walking up the hall to take pictures and were holding hands. They spent the evening dancing, visiting Kendra’s girlfriends, and eating together. To think that someone as young as Deb was interested in meeting Kendra because of how she heard me speak of her. Our words have impact. They can shape change.

Kathy Snow, at disabilityisnatural.com, explains that the way in which we describe someone can have an impact on their lives. The article goes on to explain: “Using People First Language—putting the person before the disability—and eliminating old, prejudicial and hurtful descriptors, can move us in a new direction.”

Though we may come from different backgrounds, the one thing we have is common is the need to feel loved. Everyone is worth loving and living our best lives. As parents and family members, we must demonstrate love and acceptance of our loved ones if we want others to do the same.

May we practice love, respect, kindness, and patience with everyone we come in contact with. May we be intentional in helping others feel valued, respected and do our best to gain understanding of one another.

“Yet you, Lord, are our Father. We are the clay, you are the potter. We are all the work of your hand.” Isaiah 64:8 NIV

Each year as we remember the life and legacy of Dr. Martin Luther King Jr, I’m reminded of something I experienced a few months before my thirteenth birthday. The encounter left an indelible impression on me and all these years later, I’m reminded of the positive impact it had on my life.

Dr. King was assassinated on April 4, 1968. That year was my first time going to a school where a lot of the students didn’t look like me. Up until 1968, I had been taught by teachers who were black. Our new home was in a predominantly white community. Though the Brown v. Board ruling passed in 1954, the desegregation process was gradual and was only just beginning in our school district, the second largest in our state.

At twelve years old, I and my younger siblings were excited about attending a new school, making new friends, going out to recess, and discovering what was on the lunch menu. For most of the Black and White students, this was our first time attending school together. While our parents might have had bigger concerns, we were fascinated by each other—by our different pigmentations, hair textures, ways of speaking, music, and dance moves. We were enjoying being young and our parents shielded us as much as they could from a lot of the serious things that were going on back then.

A curious child, I would listen to what the grownups discussed when they thought I wasn’t in hearing range. There were several times I heard about relatives having to bond older cousins out of jail for participating in nonviolent sit-ins at segregated lunch counters in stores around town. The Civil Rights Movement was actively taking place in our city but as children, we went on about our daily lives. Back then, when school let out, kids could hardly wait to toss our bookbags and rush outside to ride bicycles, play hopscotch, shoot marbles, jump rope, toss footballs, run bases, climb trees, play hide-and-seek, and listen for moms to call them to come eat dinner. We didn’t watch much television and when we did, it was usually a program that the family could watch together before bedtime. There was no such thing as multiple tv sets in homes back then.

The evening of April 4, 1968, all major television programs were interrupted to announce the assassination of Dr. King. Walter Cronkite interrupted the CBS News broadcast with this message, “Good evening, Dr. Martin Luther King, the apostle of nonviolence in the Civil Rights Movement has been shot to death in Memphis, Tennessee.” The story dominated the news cycle, and people gathered in the streets around towns, crying, hugging, and offering each other emotional support. There were many who were angry, but the majority stayed peaceful, in honor of King’s example of nonviolence. My mom and our next-door neighbor stood outside in the front yard tearfully embracing; no words were necessary.

As King’s oldest daughter, Yolanda, and I were born in the same month and year, my thoughts were with her. My daddy meant the world to me, and it was difficult for me to process what she must’ve been feeling. I imagined her experiencing profound shock and grief, while at the same time, worrying about her younger siblings. Being the oldest sister in my family, I imagined she was thinking about how to protect her siblings from feeling the same deep sadness she was feeling. Needless to say, that was not a good night for our family, as the phone kept ringing with relatives and friends calling to share their grief and fears.

The next day, we returned to school. No one was interested in learning, as everyone wanted to share what went on at their homes the previous night. Black students shared similar stories of sadness and tears. To my alarm. several of the white students shared that their parents had held celebrations, inviting friends over, cooking out and shooting guns into the air. The black kids were shocked, hurt, and disappointed, and angry, especially hearing such stories from students they considered to be friends. I don’t think the stories were shared out of malice but rather stemmed from youthful honesty. Early in the school day, fights and arguments broke out amongst some of the upper-class students.

Our school was led by Mr. Smith, the first white male principal I had ever encountered. His calm, welcoming demeanor made us comfortable. Many mornings, as students arrived at school, he stood outside smiling and greeting us as we entered the school building.

I imagine that our principal lost sleep during the night, contemplating how to handle what could turn out to be a difficult ending to our school week.

As soon as chaos began to spread among the students, Mr. Smith spoke on the school’s public announcement system. He called an impromptu assembly program. All students were asked to report to the school auditorium. We usually loved having assembly programs, as they gave us a break from class and routine. However, the purpose for this break in routine was different from previous ones.

As we filed into the auditorium and took our seats, students and teachers needed assurance that we were safe and that our lives would return to normal.

As Mr. Smith stood on stage behind the podium, he gazed at the audience in silence for what felt like a long time. His voice full of emotion, he expressed sadness at the death of Dr. King. Then, he spoke about practicing empathy, being kind to others, showing respect, loving one another, and caring for others. He told us that each of us had a responsibility to make our world better for everyone. He told us that we were better together. He requested that we stand up and hold hands with the persons next to us. Then, he led us in a song:

It isn’t any trouble just to S-M-I-L-E

It isn’t any trouble just to S-M-I-L-E

So smile when you’re in trouble

It will vanish like a bubble

If you’ll only take the trouble just to S-M-I-L-E

It isn’t any trouble just to C-A-R-E care

It isn’t any trouble just to C-A-R-E care

So care when you’re in trouble

It will vanish like a bubble

If you’ll only take the trouble just to C-A-R-E care

It isn’t any trouble just to L-O-V-E love

It isn’t any trouble just to L-O-V-E love

So love when you’re in trouble

And your heart will surely double

If you’ll only take the trouble just to L-O-V-E love

When the song was over, he came down from the stage and walked among us, hugging students and teachers alike. Soon, teachers were hugging each other and their students. Then, the students began to hug each other, some crying, some smiling.

We walked out in silence, having gained some sense of comfort and returned to our classroom assignments. The rest of the school day was quieter and felt sort of strange, mingled with sorrow and beauty. I don’t recall that we ever spoke openly again about our personal experiences on the death of Dr. King. In those days, we weren’t offered school grief counseling. Mr. Smith served as our counselor and did his best to acknowledge our grief and calm our fears.

Though the trauma of that tragic event has stayed with me throughout my life, my I still remember Mr. Smith for the kindness, empathy, and compassion he showed. He validated our pain and feeling of loss and I’m forever grateful for his leadership on that day.

“Nothing is more important than empathy for another human being’s suffering. Not a career. Not wealth. Not intelligence. Certainly not status. We have to feel for one another if we’re going to survive with dignity.”— Audrey Hepburn

Over thirty years ago, I became mom to two precious children. While my first child advanced quickly, my younger child, Kendra, began to regress after she turned two years old. She stopped talking and was later diagnosed with autism and a developmental delay. Her diagnosis and the ways in which it impacted her life and our family’s life was devastating.

My twelve-year-old self had no idea that like Dr. King and Mr. Smith, I would one day be called to be a voice for the voiceless, express love for those who are marginalized in society, offer hope to families like mine, and advocate for the civil rights of individuals who are often thought of or treated as insignificant.

I keep working to break down the social barriers that can lead to loneliness and despair for those who are differently challenged.

There are still many barriers that can make life difficult and almost impossible for individuals with disabilities to thrive: education, employment, housing, physical barriers, religious barriers, negative attitudes, systems, policies, lack of services, healthcare, and caregiver burnout, are a few.

The good news is that state-run disability and health programs are working together, sharing information and expertise to help improve life for people with disabilities and their families. For those who are found eligible, several federal programs provide support through various means, such as, Supplemental Security Income, Social Security Disability Insurance, Community Living Services, Medicaid, etc.

My hope is that by remaining engaged in community, connecting, and collaborating with allies, agencies, organizations, and support groups, each of us can make a difference in the lives of others who need help.

“Our lives begin to end the day we become silent about things that matter.” — Dr. Martin Luther King, Jr.

Please feel free to share a comment.

“Resolve to be tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the wrong. Sometime in life you will have been all of these.” George Washington Carver

As a child, Thanksgiving and Christmas were always my favorite holidays, outside of my birthdays. Each year, I found myself waiting and waiting for them to come again, feeling like they took forever to return. My memories of holiday celebrations are associated with comfort, love, togetherness and good times.

Being from a large family, I never spent celebrations alone. Having eight siblings, even a small birthday celebration turned into a party. My siblings and I filled up all of the seating at the dining room table. During Thanksgiving and Christmas, family often visited from near and far. Our home would be filled with laughter, noise, lots of conversations, children playing inside and outside, food, and love.

Oh, how I love to reminisce about spending time with my mom, as she prepared for Christmas. Growing up in Florida, my brothers would shop in the woods near out home for the perfect Christmas tree. We would all help decorate it, hanging silver tinsel and stringing up lights. Our mother would make hot chocolate, and we’d roast marshmallows outside over a fire in the yard.

During my teenage years, I would stay up during the night with my mother, as she prepared Christmas dinner. It was my special time alone with her. During the night, we would play Santa for my younger siblings and place their gifts under the Christmas tree. On Christmas Eve, my younger brothers had difficulty falling asleep, as they anticipated Santa’s arrival. The older siblings would sing songs, tell stories, watch Christmas cartoons, and try all sorts of things to encourage them to drift off to sleep.

I’d watch Mom bake cakes and pies, make dressing, baste the turkey and arrange and rearrange the dining table. She allowed me to help mix, stir, frost cakes and watch over dishes on the stove, which influenced my love of cooking and baking. In my mind, our Christmas table felt as welcoming as a Norman Rockwell painting.

There is no substitute for the comfort that time spent with family and friends can bring. Presents do not take the place of sharing traditions, memories, love, support, and the presence of those we love and who love us.

In all honesty, I must admit that since our daughter Kendra was diagnosed with autism at the age of two and a half, holiday celebrations have never been the same. For the past 25 years, the ways in which we have celebrated the holiday season has been as varied as my hairstyles. Anyone who knows me will tell you I’ve rocked a wide variety of hairstyles.

At first, I didn’t realize that there were things I could have done differently, in order to make holiday visits and gatherings less stressful. By the time Kendra turned three, my mom could no longer host our family gatherings. Being that I was our mother’s oldest daughter, I felt badly that I was unable to take on the responsibility of entertaining during the holidays.

While trying to grasp our new lives caring for and loving someone who displayed characteristics we didn’t understand, being a host or interacting with others became a challenge. It became uncomfortable and increasingly difficult to take our child for a visit or invite others over to our home. Yes, even our closest family members. Looking back, I think I worried that Kendra would be unable to mask or suppress her autistic traits while others were around. We were unprepared to confront the questions and stares that were sure to follow.

How would I explain to them if she started humming out loud? The first time I heard her do it, I wondered why she had replaced her words with strange noises. Sometimes, she was totally silent and at others, loud. Before hearing her hum, I was unfamiliar with the term stimming. Her noises sound like tunes that she changes, depending on if she is happy, sad, in pain, angry, or maybe even bored. Stimming noises can help a person with autism manage sensory input, express emotions, self soothe, provide comfort and calm to the individual.

At five years old, Kendra walked and ran on her tippy toes. She was in constant motion, moving from one thing to another, curious and touching everything in sight. Once while sleeping overnight with family who had expensive items displayed about their home, Kendra proceeded to touch and explore. Knowing we couldn’t replace the items, I went into panic mode, pulling her away. Kindly, I was told to relax and allow her to enjoy herself, as the items were replaceable. To this day, I remember the calm that came over me, to hear the tolerant and unexpected response.

It’s easy for us to brag about our children to others and talk about their accomplishments. However, depending on the severity of their disability and how it affects them personally, it can be difficult to talk to others about it. Some parents find it easier to just stay at home or to attend gatherings alone, leaving their partner at home with the child or adult.

Recently, I listened as another family member walked into our crowded family Thanksgiving gathering and interrupted us to make an announcement. We were told that a young adult with autism would be coming in and not to be concerned if he seemed a bit anxious while getting used to the crowd. As I observed the group, no one seemed overly concerned and welcomed them with open arms. Once inside, the young man walked around observing the space and moving among us, seemingly taking everything in with a smile. He seemed to enjoy being with us and was soon sitting quietly working in an activity book that he had brought along.

Several years ago, a mom shared with me about how difficult it was for her to take her son to visit with family. She left hurt that no one seemed to talk to him, and his cousins never engaged with him or included him in activities. I understand what that feels like. However, I admit that my husband nor I have neglected to explain to others how to engage with or include Kendra. We just assume that those who love us also love her and would learn how to be present with her. Sometimes, to be fair, we need to teach others how to communicate and engage, just as we once had to learn ourselves. All of this can be time consuming and as each of us knows our child’s behaviors and needs best, we must decide what works best for our family during the holidays.

The decision of how to celebrate the holidays can be daunting, especially if you enjoy spending time with family and friends. My family and I have learned to enjoy celebrating the holidays in various ways. Sometimes we welcome others to join us in our home, we take Kendra with us and join others, I may go solo and leave food at home for my husband, son, and daughter. or we may enjoy a quiet dinner at home. Kendra usually spends time attending Christmas dances and activities that include individuals with disabilities, and she has even treated her friends to join her for a visit to a local Christmas display.

As parents of individuals with disabilities, we spend too much time worrying about how we will enjoy the holidays, rather than just enjoying time together. For me, it no longer matters what we do, as long what we do means less anxiety and less stress for everyone involved.

This year we had a quiet family dinner at home for the four of us. Kendra helped me in the kitchen, cleaning up behind my messes. I even convinced her to use the cake mixer to blend the chocolate frosting. Her reward was the same as my mom used to give me, the bowl in which to scrape the leftover frosting. Our meal consisted of all the traditional favorites, and we rolled away from the table and relaxed during the evening by listening to Christmas music, working on a puzzle, and I’m told that I even took a nap on the sofa.

As we wind down this holiday season, I’m reminded of those missing from our presence. Many are hurting or sad during this time of year. Some of us have lost loved ones or we know someone else who has lost someone they love. There are those who have faced divorce, loss of homes, jobs, and didn’t have the option of choosing what to cook for dinner. Not everyone is rocking around the Christmas tree.

“The most terrible poverty is loneliness, and the feeling of being unloved.”

Let us remember someone who may be lonely, disheartened, or in need of help and do what we can to provide support. Don’t wait for them to ask for help. Give love at Christmas and all throughout the year.

May each of you have a wonderful Christmas, Hannukah, and Kwanzaa. I look forward to all of us enjoying a new year that is filled with hope, peace, joy, health, and togetherness.

“Lord, grant me resilience in the face of daily challenges. As I navigate the complexities of caregiving, infuse me with the strength to bounce back and the courage to persevere. Let your grace be my constant companion, empowering me to face each day with unwavering resolve.”

The month of November is a favorite month for several reasons. Every year, I look forward to gathering with family during the Thanksgiving holiday. Nothing takes the place of being with those you love and enjoy, eating a meal that includes a few our favorite things, and giving thanks for another chance to be together. November 7th, I am blessed to add another candle to my birthday cake. This year, I turned Sensational Seventy! As Bob Hope said, “You know you’re getting old when the candles cost more than the cake.”

November is also National Family Caregiver Month, a time to recognize family members who have “around the clock” duties of taking care of a loved one. Several organizations offer resources and information to help raise awareness, educate communities, and support the needs of our nation’s caregivers.

I am part of a large and steadily growing group of people. According to Caregiver Action Network, 63 million adults care for a spouse, elderly parent or relative, or special-needs child. While we’re all similar in some ways, we’re as diverse as are our loved ones.

For 30 years, I have been a fulltime mother, providing personal and emotional support for our daughter, Kendra. She is living with autism and an intellectual disability. She is nonverbal and communicates in other ways. While I’m grateful to have the opportunity to love and support her, doing so on a daily and yearly basis can take a toll. Caregivers often deal with a mix of emotions, including tiredness, anxiety, overwhelm, depression, guilt, loneliness, fear, and helplessness, just to name a few.

From her early years until now, I’ve had to endure ignorant or unsolicited comments and “helpful” advice from well-meaning individuals, acquaintances, strangers, and professionals. If only I could get back the time I wasted feeling guilty about her being diagnosed with a disability. During that time, I was busy caring for Kendra, attending school meetings, taking her to appointments, working, and squeezing in a little time for her dad, brother, and managing the household. There was no time left for me.

When Kendra was younger, she had boundless energy and was in constant motion. She was more interested in climbing, running, stacking her toys and less interested in engaging with others. Without knowledge of her diet, well-meaning individuals would tell me that I should stop giving her candy. Already feeling guilty about her being diagnosed with a disability, I’d end up feeling even more guilty. During a family dinner, when “too much candy” was mentioned, a relative who majored in psychology and interacted with persons with autism replied that Kendra would grow up to be calmer and in better control of her behaviors. I recall breathing a sigh of relief that she came to the rescue, and I didn’t have to respond. Mothers are expected to have all the answers. We don’t.

Before the diagnosis, I had never heard of autism. Like others, I didn’t know what to expect or if I had the ability to take care of my daughter. I did know that I loved her and would do everything in my power to help her have her best life possible.

Reaching out to professionals for help was hit or miss, as thirty years ago there was not much information available about autism. Newly diagnosed, Kendra was seen by a psychiatrist who was supposedly familiar with autism. Without a hint of compassion or empathy, she looked me straight in the eye and said, “She will be mentally retarded.” (The R-word was still considered a medical term. I thought, “So, is she retarded right now?” She offered no further instructions or advice, just a condescending stare of pity. Shattered, I think I managed a polite “thank you,” and took Kendra by the hand and walked what felt like a long walk to our car. I remember passing people along the way, trying to appear as “normal” and carefree as possible. Kendra was tiny and cute, and no one could look at her and identify her disability during that time. Whatever I had hoped to gain on that visit, we never went back.

Kendra had a pediatrician appointment to check out her recurring earaches. The doctor’s assistant was very patient and got down on the floor, to interact with Kendra. While she was engaging my child, the physician asked me, “Did you take drugs while you were pregnant with her?” I tried to tell her that I’d never taken an illegal drug in my life. She gave me a look of disbelief and disdain. Once more, we walked out of that office, never to return.

By the time Kendra was three, she was seeing so many specialists that I could barely keep track of who they were and why we needed them: a pediatrician, a developmental pediatrician, an otolaryngologist, an audiologist, a psychiatrist, a speech pathologist, and an occupational therapist. and a school evaluation team. I struggled to understand what an Individualized Education Program (IEP) was and again, who all the professionals were who seemed to know Kendra better than I did.

By the time she was in middle school, I was coming to terms with the fact that our child would always require a level of care at home, in school and when she exited school into adult life. As much as I wanted to believe that I would always be able to provide what she needed, I began to realize it was not possible. She also was beginning to show me that she didn’t want to be limited to spending all of her time with me.

Every morning since Kendra was in kindergarten, I had stood outside with her, as she waited on her school bus. Now a middle schooler, she let me know that he no longer wished me to accompany her. One morning, she took me by the hand and lead me back into the house. She walked through our family room, all the way to my bedroom. She walked me inside of the bedroom, said, “Ba” and closed the door. I put my ear to the door, listening. Once I heard the front door close, I walked out of the bedroom and rushed to the front room. There she was, standing at the mailbox, waiting on her bus. She was “talking,” telling me that she could do it all by herself. Encouraging independence, from then on, I watched out for Kendra from our front window.

As our children grow older, so do we. Recently, I volunteered at a conference that was attended by many parents I’ve known since our children were adolescents. Most of us who attended the event are either caring for or directing the care of an adult child with disabilities. As I stood at the front entrance to greet the attendees, they moved in slow motion as they climbed the slight hill to the front door. Some stopped to catch their breath before they proceeded to the lobby. It took me a moment to recognize some of them, their hair now turning silver just like mine.

“You Can’t Pour from an Empty Cup”

When the pandemic happened in 2020, I could no longer neglect myself. I put my name on the To-Do list. Working virtually from home, I rose up early to practice mindfulness exercises (4-7-8 breathing, qi gong) pray and read something inspirational. Sitting outside with my morning coffee was a refreshing start to the day. Gardening, taking short walks, meeting family members in a park to eat sack lunches, dancing to music and singing the lyrics out loud helped me to deal manage stress. During the year I worked from home, I wrote in my journal and read over 12 books.

Since then, what’s been therapeutic for me includes weekly exercise, lunch dates with friends, dance classes, making new connections, volunteering, the occasional art class, decluttering, organizing photos and important documents, writing a newsletter and a monthly column for a digital magazine, and tackling small home improvement projects. I focus on making a habit to intentionally enjoy each day.

I wish I could report that we have it all figured out but we don’t. When Kendra was younger, I figured that she would always live with me and her dad and that we would care for her. However, as she has grown older, I know that would not be a good decision for her or for us. Three years ago, my husband and I thought that we had found Kendra her own residence, but it didn’t work out that way. After several months, she moved back home with us. Going through the experience taught me a lot about what worked and what will be needed to help her move successfully.

Thankfully, I have the energy of someone half my age and hope it stays that way for many years to come. No longer do I have to care for Kendra fulltime, as she now benefits from direct support caregivers who work for her on a weekly basis and some weekends. Kendra is a determined and independent spirit, capable of doing many things with minimal support. Her caregivers take her into the community to volunteer, visit restaurants, attend various activities like arts and crafts, exercises, and dances. Every now and then, she asks me to join her.

During summer, Kendra was proud to volunteer at a nearby community park. Unable to verbally communicate, diagnosed with autism and a developmental delay, she rarely gets the opportunity to demonstrate her skills and ability to collaborate with others. Her direct support person (DSP), Mrs. Saddler, is a determined individual who recognizes the value of Kendra and others like her being included and actively engaged in their communities. We search online and she drives Kendra to locations around our county, seeking volunteer opportunities.

One day, Ms. Saddler and Kendra returned home and announced that Kendra would be volunteering at a nearby park with our county’s summer meal program. The program offers free breakfasts and lunches to families with children ages 18 and younger and adults with disabilities ages 19 and older. The grab-and-go meals are offered for curbside pickup at various locations, weekday mornings. Volunteers work for four hours and are responsible for setup, distribution, and cleanup.

Kendra was a great team player, working side by side with high school students who enjoyed getting to know her. She greeted the cars with a smile, walking up and handing meals through the windows as they pulled up. Ms. Saddler assisted her by making sure that Kendra correctly counted the number of breakfasts and lunches requested. When traffic slowed down, rather than becoming stressed or anxious, Kendra spent her breaks browsing through the center’s community magazine.

With exceptional skills in organizing, Kendra helped to store leftover meals on carts and returned the carts to their designated storage space. She broke down the empty boxes and placed them in the trash dumpster. Her obsessive tendencies wouldn't let her leave the area until everything was tidy and in its rightful place.

Volunteering not only gave Kendra the chance to engage with others, but it also gave others a chance to experience her gifts and talents and her willingness to be a team player. Being engaged with her colleagues and serving her community gave her a sense of pride and accomplishment. It offered her colleagues an opportunity to support and foster relationships with someone who is differently abled. Kendra’s participation fostered inclusivity and made a positive impact on others. With that bright smile of hers, she gave her best.

That was last summer. This summer, Kendra returned to the park to sign up to volunteer. A different person was in charge of the meal program. When Ms. Saddler mentioned that Kendra was there to sign up as a volunteer, the manager of the program responded with an emphatic “No.” She stated that they had enough volunteers. She seemed to lack consideration and awareness of how involving Kendra could positively impact the other volunteers and community. Couldn’t she have made room for one more? It makes me think about how important it is to spread awareness.

Despite being turned away, Kendra has continued to volunteer, though not on a daily basis. Some days, it can be visiting community food pantries, delivering items to a senior neighbor’s home. Or taking the time to visit a friend who is unwell or grieving. Undeterred, Mrs. Saddler and I continue assisting Kendra in finding opportunities that she will enjoy. The list of resources is limitless: Libraries, parks, animal shelters, community events, thrift stores, visitations, donation centers, etc.

To members of society who may experience social exclusion and lack access to opportunities to serve, volunteering has many benefits: increased self-esteem and confidence, social engagement, personal and skill development, and a sense of belonging. It can help build skills that may lead to employment. Not only does it help to reduce isolation and loneliness, but it also helps develop friendship and foster community awareness. It helps improve mental health, by improving moods and decreasing anxiety.

I plan to contact our county volunteer services department and share Kendra’s experience, hoping to bring awareness to the importance of giving everyone the opportunity to contribute to their community. Kendra will return to the park next summer to offer help.

Resources: www.cdc.gov/disability-inclusion, www.helpguide.org/mental-health/wellbeing/volunteering-and-its-surprising-benefits, https://myautismmind.com/autism-volunteer-opportunities

As always, I welcome your questions and comments.

Last October, I shared the story below, after the passing of my dear brother, Ronald. Since that time, I have struggled to write my thoughts. You should see how many drafts I have started and not yet completed. My list of topics is unlimited; my words have been trapped inside. Originally, I didn’t think I had what’s known as Writer’s Block but think that maybe that is what it is.

Ronald was one of my biggest cheerleaders, always encouraging and giving his honest thoughts. If he were here, he would tell me to keep going.

September will mark a year since we celebrated Ronald’s 70th birthday and October will mark the month that he went away. As time goes on, I find myself smiling more, grateful that he was here and that he shares so much laughter and love. I will go on writing, because someone may be depending on it.
May you keep living, loving, laughing, learning, and embracing life, no matter what.

Miss Me But Let Me Go

When I come to the end of the road

And the sun has set for me,

I want no rites in a gloom filled room.

Why cry for a soul set free?

Miss me a little, but not for long,

And not with your head bowed low.

Remember the love that we once shared,

Miss me but let me go!

For this is a journey we all must take,

And each must go alone.

It’s all a part of the Master’s plan

A step on the road to home.

When you are lonely and sick of heart

Go to the friends we know,

And bury your sorrows in doing good deeds,

Miss me but let me go. by Christina Rosetti

Story written October 19, 2024

For the past two weeks, I’ve started writing and found it difficult to complete what I intended to share. In September, I shared a story that was titled, A Chance to Get Away. I told you about Emory and I taking a trip to Maryland, to celebrate my brother Ronald’s birthday.

“Be a little kinder than you have to.” —E. Lockhart

Over a hundred friends and family showed up to celebrate with Ronald. When he arrived at the venue, he was met by people grabbing him for hugs, kisses, and handshakes. It took a while for him to reach his assigned table, and he hardly sat down the entire evening. I enjoyed hearing all of the speeches and compliments from many of Ronald’s friends and the younger people in the crowd. My own comment was brief, as I wanted to give others an opportunity to share. He humbly accepted the love and many gifts that were showered upon him.

We were entertained by a video, created by Savannah, Ronald’s eldest grandchild. It spanned his early years, teenage years, the cars he drove, his marriage, childbirth years, the weddings of his son and of his three daughters, his work, friends, and church activities, and pictures of him spending time with his twelve grandchildren. What an impressive video about an incredible human being.

On Monday, my dear brother went to be with the Lord. His exit seemed so sudden. How could someone with so much love, zest for life, energy and kindness be gone so soon? I’ll never understand how he was able to hide his illness from all of us. He kept going, until he couldn’t. Thursday prior, we talked on the phone as he gave instructions to a worker on one of his jobsites. Friday, he called me for the last time. It was one of the few times that Ronald ever acknowledged he felt weak and that he was having trouble walking. One year older than me, he was always wise beyond his years and a quick learner, never taking himself too seriously. He learned at the feet of our dad, who was always patient and willing to teach.

“To live in hearts we leave behind is not to die.”—Thomas Campbell

During his lifetime, Ronald showed us how to live. He also showed us how to die. Things he taught me:

• Always be yourself

• Don’t waste time in things you’re not interested in

• Be honest

• Speak up

• Care about others

• Engage with the elderly

• Make people feel special

• Put a smile on someone’s face

• Harm no one

• Enjoy family and friends

• Enjoy your work

• Appreciate the outdoors

• Live a simple life

• Be concerned for more than yourself

• Teach and encourage the younger generation

• Abstain from unhealthy habits

• Be tolerant of differences

• Give abundantly

• Don’t expect anything in return

• Make others laugh

• Love unconditionally

My brother had a wonderful sense of humor and made everyone feel special. I’m already missing his weekly calls and him ribbing me about something. His grandchildren will miss him calling them by their special names. With the birth of each of them, he ignored their given names and made up his own. What a character.

My sister-in-law, Marlese, said his last words were, “God’s got me.” Heaven is better for it and I’m sure he’s already ribbing someone up there and has the crowd in stitches.

Peace be unto you, Ronald.

Thank you for allowing me to share my personal journey of dealing with the loss of my brother. Your comments are welcomed.

I recently met a parent with a young child who has disabilities. The child is not verbal and was found eligible to receive special education services. Being over the age of 3, the child qualified to receive school services under an Individual Education Program (IEP).

When the mom shared that her child was enrolled in a local school district, I was glad to know that her child was able to receive early intervention services. However, she proceeded to inform me that she had pulled her child out of the school system and was seeking services in daycare. I became concerned about the mom’s refusal of the services that the early intervention team had determined would benefit her child. On the other hand, I empathized with the parent, as I have walked in her shoes.

At three years old, our daughter, Kendra, entered school to receive early intervention services. Prior to turning three, Kendra had stopped speaking and was diagnosed with autism and an intellectual disability. During her transition into school, the IEP team members did their best to help me understand the services that would be provided. However, because I was still in a state of disbelief, fear, and grief, the process was overwhelming. I was still dealing with the fact that my beautiful child was no longer calling me “Mama.” It hurt to accept that she would not be schooled in the same type of classroom setting as her brother.

What would I tell my family, friends, and coworkers? When they brag on their children, do I brag that my child is in Special Ed? What will they think of me? How had I failed my child? What would become of her?

As Kendra rode off on that short, yellow bus for the first time, it was such a lonely feeling. I teared up, as I watched that small, little girl climb the stairs and get buckled into the large bus seat. One could barely see her head in the bus window. She was the first stop for the driver and the only child on the bus. How lonely. As they drove away, I wondered: Who was that person driving the bus? Would anyone know who she was when she arrived at school? Would there be someone there to keep her safe? Why did she have to be separated from her brother and attend a different school? Should I follow the bus to make sure she arrived safely?

You see, I understood the mom. Almost 30 years before, it was likely that I felt everything she was feeling now. Was I doing the best thing for my child, allowing her to be labeled? When the IEP team mentioned that Kendra would receive speech, physical, and occupational therapies during her school day, it frightened me. Why was she not being given a chance to just be like all the other children?

When the mom explained to me that she has faith that her child was going to change, I smiled and agreed. She has a right to choose what she thinks best.

Having gone through years of schooling, Kendra exited school at the age of twenty-two years old. Thinking back to her first days at school, it feels like it was just yesterday. Having gone through her experience and working more than 16 years with families of children who receive services in special education, this is what I would tell any parent who is just starting out:

• I understand and respect your fear. So much of my fear is my inability to change things and make them the way I want them to be. Facing the unknown was frightening when Kendra was three years old and it still is. Building trust in others is critical, as you cannot do it alone.

• There is no way for anyone to guarantee the outcome of your child’s life. Not you, a teacher, physician, therapist, friend, or family member. No magic mirror can predict what the future holds.

• Do not waste time wishing your child was someone other than who s/he is. Love them now and do not wait for them to be different. Find value in things that make them unique. If they are not playing properly with toys but stack them or place them in order, that can actually become a job skill.

• A label is not who your child is. Labels serve in school to help coordinate a student’s appropriate supports and services, to understand strengths and weaknesses and what interventions and therapies may benefit a student. In school and in the community, funding and resources are allocated to support an individual’s specific needs. It can also connect families with others who have similar experiences and offer a sense of belonging.

• Be aware of how you think of or speak of your child. Rather than focusing only on your child’s weaknesses, concentrate on their strengths and ways to help them make the most of them. In a prior newsletter, I shared a story of how a middle school student overheard me speaking about Kendra during a presentation. As a result of what I said, the student asked to accompany Kendra to a school dance. She stayed with Kendra the entire night, dancing and participating other activities.

• Regardless of over 20 years participating in Kendra’s meetings and training parents about the IEP process, the IEP meeting rarely left me feeling good or uplifted. Though I learned to control my emotions and focus on what Kendra required, I always felt emotional talking about my child’s weaknesses and needs. Even when I understood the goals and objectives in her plan, it was never easy to navigate and to hear things that were hard to accept. It is still not easy but necessary.

  

• Special Education is not a place. It is only about the services that are deemed necessary to help a student achieve academic success. Services and needs can change as the student grows older, and data illustrates that they no longer need certain supports or services. Some students may no longer require services, although some may have needs beyond high school.

  “You attract more bees with honey than with vinegar.”

• Effective communication is key to supporting your child, in school, at home, and in the community. I will share my thoughts about learning to communicate effectively in a later newsletter. If you have a child who will require special services, you will be communicating with others for a long, long time. Learning how to be an effective team member is critical to your child’s success.

• Control what you can. You can always choose to make changes, when necessary.

  “God, grant me the Serenity to accept the things I cannot change, Courage to change the things I can, and Wisdom to know the difference. Living one day at a time; enjoying one moment at a time; accepting hardship as the pathway to peace.” — Reinhold Niebuhr

  I wish you and your child(ren) a positive, successful school experience this year.

Do you remember what it was like the last week of school? The entire place would be buzzing with energy. Testing was winding down, students were practicing for promotion and graduation ceremonies, teachers were planning end-of-school activities, and everyone was smiling a little more in anticipation of time away from the classroom.

Time away from school means more time at home and hopefully, a less demanding schedule for everyone involved. Having a child with special needs can bring additional challenges, and you might be feeling more stressed as you navigate how to manage each day. If your child has a developmental or intellectual disability, it is important to encourage continued learning to maintain the skills they’re already developing. What can you do to make learning fun? How do you maintain your sanity in the process?

While our daughter, Kendra, was enrolled in school, I was working fulltime during the school year. Being nonverbal and diagnosed with autism, Kendra received services in special education. Her academic goals and objectives were addressed through a Individual Education Program (IEP). We were both at home during summer and I needed the break as much as she did. Early on, I decided to choose one specific goal or objective to focus on during the summer. The objective focused on a skill that would empower Kendra to be more self-reliant.

When she was almost five years old, she was still not independent in the restroom. I was still changing diapers, which became more difficult as she grew stronger and would not stay in one place. Realizing that some daycare centers, after-school programs, camps that include all abilities, and other recreational programs sometimes choose to deny services to those who may need support with toileting, I considered it a priority to focus on toileting.

When school ended for the summer, I set a goal to focus on toilet training. Using a timer, the ringer reminded me to offer her a bathroom break. Convincing Kendra to sit on the toilet, I would sit on the edge of the bathtub, praying that she would sit for at least a minute or two. Initially, two minutes was too long, but I kept returning several times a day, repeating the process. Depending on her mood, I would sing, read, and talk to her as she sat whining. Often, I cried more than she did, as it seemed as if she would never be successful. Being as stubborn as she could be, I was persistent and consistent and repeated the same steps every day for several weeks. Even if she did nothing but sit still for a few minutes, I would give her a treat for doing so. At that time, a single raisin was enough of a treat to motivate her to try. As time went on, two minutes were increased to five or longer, without whining.

Finally, a light-bulb moment! Just before the new school year, I spotted Kendra going to the bathroom without me having to prompt her. Independently, she used the toilet appropriately and I only had to assist her in washing her hands. I was overwhelmed with excitement and offered much praise.

By the time school started, she was wearing cotton underwear, with minimum accidents. When the new school year began, she was independently using the restroom and has done so since that time.

Depending on your child’s needs and goals, you may already have a goal you consider most important for your child’s progress. Academics are important but if you wish to give your child a break from studying, there are other things you can focus on. Some ideas: enjoying reading or listening to books being read, bathing, choosing proper clothing, dressing, folding and organizing their bedroom, practicing quiet time, going into the community, shopping, counting money, etc. You know your child better than anyone, so allow them to help you choose a goal important to them.

There are also ways to include fun into the day that cost little or no money: board games that support taking turns, movies, music, karaoke, dancing, walking in the park, visiting the library, having picnics in the park or back yard, arts and crafts, swimming or playing in water, etc. To support social skills, collaborate with another parent, to allow your child to spend time with a friend. Depending on your child’s ability to interact, this may take planning. In past years, Kendra would go over to a friend’s home and participate in music therapy. Though both of them are nonverbal, they had fun making music together.

Many states have various summer camps that accommodate children and/or adults who have disabilities or other diseases or conditions. There are camps that are exclusive to persons with epilepsy, autism, down syndrome, cancer, visual impairment, hard of hearing, diabetes, attention deficit disorders, bereavement, brain injury, cerebral palsy, and other chronic illnesses or disorders. Some camps include mixed needs, such as physical disabilities, emotional disabilities, and learning disabilities. As you know your child best, you’ll have to decide which type of setting will best address his or her needs.

Other things to consider are your child’s interests, location, hours of operation, staff ratio, cost, whether the camp is half-day, full day, weekend, or overnight. It may also be beneficial to ask other parents for referrals to camps their child has attended.

Keep in mind that camp enrollment fills up quickly and it is best to submit applications in March or two months before the school year ends. If cost is an issue, you may inquire about scholarships and seek funding through your local state agencies that focus on behavioral health and developmental disabilities. Funding sources may vary from state to state.

Volunteering offers every individual a sense of purpose and achievement. During summer, Kendra volunteers to hand out lunches for the free summer lunch program, at nearby parks. It is her way of contributing to the wellbeing of her community. The experience not only sharpens her social and functional skills but also gives others the opportunity to become acquainted with someone who is differently abled.

Whatever you decide to do with your child(ren) during the summer, make time to laugh, love, play, relax, breathe, and be grateful.

Happy Summer!

“April showers bring May flowers.” The month of April is usually known as a month for rain showers in the United Kingdom, where the English proverb originated. After cold winter months and gloomy, rainy days, spring offers the chance for beautiful flowers to bloom. “April showers” can reference hardships and “May flowers” as hope and change. Overcoming obstacles and difficult times can bring about new experiences and opportunities for growth and hope.

April 2nd of each year is recognized as Autism Awareness Day. Autism is a developmental disorder that may impair social interaction and communication. The purpose of a day of awareness is to help others understand or gain knowledge about autism and how it presents itself in individuals. There’s a saying, “If you know one person with autism, you know one person with autism.” As with our fingerprints, we are none of us exactly the same and neither are persons with autism.

One of the best ways to gain a better understanding of autism is to spend time with someone who lives with it. Even better, spend time with several individuals. According to the Centers for Disease Control and Prevention (CDC), as of 2020, 1 in 36 children in the United States were identified with Autism Spectrum Disorder (ASD). In this writing, I will not delve into the characteristics, but I am providing websites that offer valuable information on the topic. The following list shown below is non-inclusive.

https://www.autismspeaks.org, https://autismsociety.org, https://embrace-autism.com, https://nationalautismassociation.org, https://www.aacap.org, https://www.cdc.gov

The entire month of April is recognized as World Autism Acceptance Month. In addition to learning about autism, it is important that we actively promote ways in which we help individuals with autism thrive and connect with others in their communities. Rather than us just focusing on the differences and challenges of autistic persons, we must recognize their talents, strengths, and ways in which they can contribute to society.

For many years, I was driven to find ways in which to eliminate my child’s autism. Now I realize that it is a natural part of who she is as an individual. Though it is not always been easy, having her in my life has always been worth it. She has taught me many wonderful and beautiful things about enjoying life and living in the moment. My family and I love her as much as anyone could love someone and want her and others like her to live full, meaningful lives.

As her parent, the way that I talk about and behave with Kendra helps to demonstrate how others should treat her. When she was fourteen years old, I addressed a group of parents of children with disabilities at a school, discussing the experience of living with someone who has autism. Though I do not recall much of what I said, I know I had several funny stories to share, as Kendra has offered moments of comic relief, i.e., the time she cut all of her hair and shaped her own tiny afro. She did such a good job storing the cut hair that all was not lost. We were able to donate it to an organization that makes wigs for children. As I spoke with the parents, I was not aware that a middle school student was in the audience and heard me talking about my daughter. Her mother, who worked at the school contacted me to let me know that her daughter enjoyed hearing about Kendra and asked to meet her. That young lady ended up being Kendra’s chaperone at a school dance. She was kind, patient, and seemed to enjoy the evening as much as Kendra. She exemplified acceptance. The moral of the story is that we must be aware of how we speak to and about our individuals with autism. We never know who may be inspired to take action.

College basketball’s March Madness is not the only adrenaline rush taking place this month. It is time for parents of children with special needs and individuals with disabilities to decide on camps and other activities to fill the summer months. There are various camps designed for children and adults with special needs. Applications to attend camps are typically due by the end of March, and spaces fill up quickly. However, some continue to take applications later in the spring.

What are some benefits of attending camp?

• Practice social skills

• Make new friends

• A feeling of belonging

• Promote independence

• Personal accomplishments

• Learn new skills

• Build self-advocacy skills

• Gain a feeling of competence

• Build confidence

• One of the best benefits is that parents also receive a much-needed respite. For several hours or for several days, parents may afford the opportunity to attend to their personal needs and interests.

• Depending on where you live and the age of your child, there may be camps that offer day, weekly, weekend, and overnight stays. They may specialize in a particular disability, chronic illness, or activity, i.e. autism, Down syndrome, epilepsy, traumatic brain injury, visually impaired, diabetes, cancer, therapeutic riding, aquatic therapy, and more. Some camps offer inclusive settings, for individuals with various needs and abilities. If they include children and adults, individuals are grouped with others who are of like ages.

• When our daughter, Kendra, was in primary grades, she attended a Saturday respite program, designed for children with autism. Respite last four hours, in which the children participated in arts and craft activities, dancing, or outside activities. Not only was Kendra able to spend time with her peers, it gave me and her dad an opportunity to go for lunch or to catch a movie.

• By the time she entered middle school, Kendra started attending day camps for children with autism, during the summer when school was out. She attended Monday through Friday, six hours a day. The majority of the camp’s staff were teachers and paraprofessionals, accustomed to supporting students with special needs.

• Starting in her teenage years, Kendra started attending overnight camp during the summer. It provided her the opportunity to attend camp for one week, sharing a cottage with several female peers, who were of similar age and needs. The camp included approximately thirty-six girls, who slept two to a room, each accompanied by a counselor. The counselors were college-aged, trained in CPR, many studying to become future special education teachers, social workers, and school counselors. Kendra enjoyed being accompanied by someone who seemed more like a friend or buddy. The camp also had a cottage for boys, each assisted with his own counselor. The entire group of campers participated in coed activities, as well as some that were exclusive to their group.

• The first time her father and I left her at the camp, as we were walking to our vehicle to leave, Kendra was following close behind us. I hurriedly jumped into the driver’s seat and with my window down, I told her that we would return in a few days. This was our first time leaving her with strangers overnight and it was her dad and I, not Kendra, who were holding back tears. As I drove away watching her through my rearview mirror, she showed no signs of distress and waved goodbye. We were encouraged to send email messages each day that would be read to Kendra at breakfast. Otherwise, we were instructed not to call the camp, as they would contact us, if necessary. We had to trust Kendra, as she gained her independence without us in tow. We had to place our trust in the people supporting her and in God.

• From the time we left her at camp, she enjoyed homecooked meals, prepared and served by volunteers from a nearby church. She participated in Bible study, arts and crafts, games, singing, dancing, swimming, walking, visiting an amusement park, horseback riding, and practicing for a talent show. Each day, she helped clean her room. On the Sunday that we picked her up, she and her peers presented a talent show for the parents. Earlier in the day, they attended a church service. As her father and I sat in our vehicle, we spotted her walking up the hill towards the building where they were to hold the talent show. She was happily strolling alongside her camp counselor, unaware that we were watching. “She’s in her element,” I commented, as I took a picture to capture the moment. We were so proud of her. We presumed her competent to be content staying away from us for a few days and she proved that she could do so.

• Kendra attended the overnight camp for several years, before aging out of the program at age twenty-one. It was one of her and our favorite times of the year, as we made the most of our days, as well. With Kendra away for a few days, we had the chance to experience what it could be like when she moves into her own place.

• Over the years, Kendra has attended several camps, each offering her opportunities to learn and grow and to teach others that they can enjoy spending time with someone who is differently abled. Though it is more difficult to find since the pandemic, overnight respite at times during the year continues to offer her time away from home, participating in things that she enjoys.

• If you’re interested in finding summer camps for your child or adult, search online: camps for special needs children and adults, contact your child’s teacher, ask other parents, contact parent support groups in your state or community, go to VerySpecialCamps.com.

• In my next newsletter, I’ll share other ideas to help plan a meaningful summer for your child with special needs.

• Happy Spring!

As we spring into March, my place in history doesn’t end in February. Being the great granddaughter of former slaves reminds me that I have a charge to keep moving forward. My paternal grandfather, Hagood Walker, was the son of former slaves Dorcas Walker and John Walker. Grandma Dorcas passed many years before I was born. As a young girl, I would gaze at the only picture of my great grandmother, admiring her strong demeanor. She was standing in a field, head wrapped, and a pipe in her mouth. Her stance exuded pride, strength, and tenacity. Though I never met her, I feel as though she lives on inside of me. By 1900, the census report indicated that she was a widow, independently raising nine children in South Carolina. No longer enslaved, her occupation was listed as a farmer. Each of her children were listed as farm hands. The report states that no one in the household was able to read or write. While this may have been true, it is also possible that they did not feel safe disclosing such information. Most likely, they were living on a plantation, receiving meager wages for a day’s work.

When my father, Jake Walker, was a young boy, he performed farm work on a plantation with his father. Because he had to help, he was only afforded a third-grade education. The farm’s owner would strike my dad with a two-by-four, if my father was not working quickly enough to satisfy him. If my grandfather did not agree with the behavior of the owner, he knew better than to protest. For as long as I knew my father, he took pride in his work and exhibited confidence and energy.

IIn 1958, my grandfather founded and pastored a church in Florida, which remains active today. He was a prominent leader in his community, attending to the sick and elderly, advocating for voter registration, and championing civil rights for people of color.

When my father was an adolescent, he would often accompany his grandfather, John Walker, who was a mail carrier for the black community in their town. My dad would ride in the delivery wagon with his grandfather. Like Hagood, Grandpa John was a role model and mentor to my father. He encouraged Jake to learn a trade and to work for himself. My father became skilled in carpentry and bricklaying. As a young man, he gained success opening several grocery stores and restaurants in the South. A pillar in his community and church, he became self-employed as a subcontractor in masonry work, constructing houses, business offices, hotels, college buildings, and apartment buildings throughout the South. He instructed his sons, grandsons, and others in the construction trade, several who went on to own their own companies.

My mother’s grandmother, Ella Green, was born a slave in Trinidad. She tried to escape, was captured by her overseer and struck in the head. It is reported that she lost her hair in the injured area, and it grew back as white as snow. Similar to my father's family the Green family arrived on America's shores as slaves. After emancipation, Ella married John Green and had several children, one being my mother’s father.

Today, the descendants of my great grandparents continue to thrive and contribute to American society. As responsible citizens, they serve in various capacities as ministers, dentists, builders, maintenance workers, authors, educators, college professors, lawyers, judges, medical workers, military personnel, and federal employees, fashion designers, and business owners.

For more than 20 years, I have been an advocate for individuals with disabilities and their families, educating and guiding them in planning for post-secondary life. Being the mother of an adult with disabilities, I am reminded of how civil rights advocates led the way in creating meaningful change in American society for many diverse groups of people. As the Civil Rights Movement gained momentum in the nation, the Disability Rights Movement mirrored many of the same efforts, creating an overlap in advocacy for both populations. During the 1800’s, anyone who was “diseased, maimed, mutilated, or in any way deformed, so as to be an unsightly or disgusting object” was outlawed to be seen in public. In 1876, Jim Crow laws implemented the segregation of blacks and whites. These laws extended to institutions for people with disabilities and to hospitals. For additional information, refer to arcmonroe.org

In 1964, the Civil Rights Act was passed, prohibiting discrimination based on race, color, national origin, religion, or sex. In 1990, the foundation for the (ADA) Americans with disabilities Act, was passed, forbidding discrimination based on a wide range of disabilities.

I’m grateful for the courage of individuals such as Carter G. Woodson. In 1926, Woodson and the Association for the Study of Negro Life and History created what was then referred to as “Negro History Week.” In 1976, President Gerald Ford officially called on the public to honor the often-neglected contributions of Black Americans. Thus, Negro History Week became known as Black History Month.

We stand on the shoulders of the brave men and women, who continue to rise up and face difficulties, in order that we might continue to be productive citizens of a free nation. I will continue to march forward, to make a difference in the lives of individuals with disabilities and others who need us desperately.

I Am Black History.

Mother to Son, by Langston Hughes

Well, son, I’ll tell you

Life for me ain’t been no crystal stair.

It’s had tacks in it, And splinters, And boards torn up,

And places with no carpet on the floor—Bare. But all the time

I’se been a-climbin’ on. And reachin’ landin’s, And turnin’ corners,

And sometimes goin’ in the dark

Where there ain’t been no light. So, boy, don’t you turn back.

Don’t you set down on the steps. ‘Cause you finds it’s kinder hard.

Don’t you fall now—

For I’se still goin’ honey, I’se still climbin’,

And life for me ain’t been no crystal stair.

February has flown by. Each year, on February 14th, people in countries around the world express love and appreciation for their romantic partners, parents, children, friends, coworkers and others.

Of course, all of us know someone that we love without effort. We love them with no strings or conditions attached.

“Before I understood your words, I understood your love.” author unknown

A few years ago, my son, Lance, gave me a pendant engraved with the above words. As I read them, warm tears flowed down my cheeks onto the pendant. How touching. My baby boy knew I loved him, even before he understood what I was saying. Perhaps he remembered how I counted all of his fingers and toes when he was first placed in my arms. When the nurse brought him to my hospital bed, he introduced himself by screaming to the top of his lungs. The noise sounded like that of an angel. I soothingly replied, “Aah now, what’s the matter?” Instantly, silence filled the room. I snuggled his little body close to mine and we both took our first nap together. Before he was able to see me clearly, he knew my voice. My earliest act of love for him was speaking calmly and kindly to him, as he grew inside of me. Apparently, he enjoyed me singing and reading to him, long before we met.

Two years later, when I was introduced to our daughter, Kendra, I placed a kiss on her cheeks. She stayed with me until we were released to go home. It was the beginning of lifelong unconditional love and acceptance, no matter what.

Like Lance, Kendra proved to be a pleasant, happy, and engaging baby. However, by the time she turned 2 years old, she stopped speaking and became unengaged. No longer was I to hear her loving call me Mama. It broke my heart to witness this cheerful little girl who enjoyed talking and playing with her brother and young cousins become silent. No longer did she rush to the back door, peer through the screen door to wave and wish visitors “bye bye”.

When Kendra was later given a diagnosis of autism, I read everything I could get my hands on, as I had never heard of it. Much of what I read lead me to believe that individuals with neurodevelopmental or related disabilities may not understand or know how to express love or sense the emotional needs of others. However, this is far from the truth. Especially when a person is nonverbal and makes noises in the place of words, it is a misunderstanding to assume that they are unable to love. Kendra has proven over and over again that she indeed loves and enjoys receiving love. We still get looks of shock in public, when Kendra hugs or kisses me or her dad or brother.

Of course, because individuals with sensory issues may not like to be touched, it is important to get to know them and what is acceptable. There are days that Kendra doesn’t want to allow others into her space. There are others where she’s very cuddly and friendly and she initiates touch by hugging, patting a person on the back or taking their hand. Despite being nonverbal, she is a social butterfly and enjoys crowds and people watching. She likes receiving praise and attention from others. Who does not enjoy praise? She expresses love by offering bottles of water to us and to visitors. She will even pass out snacks (ones that are not her favorites), as we sit to watch television.

If you have opportunities to share time and friendship with individuals with disabilities, know that the majority of them understand and feel emotions the same as you do. Even when they are unable to communicate, they appreciate demonstrations of patience, kindness, appreciation, and love. They learn by the examples you set.

“Shower the people you love with love.” - James Taylor

This month, I have given more thought on ways to show love to those who mean a lot to me. With the recent passing of my brother, Ronald, I realize how important it is to not just think about someone but let them know I am thinking of them. Ronald called me often. He did not care if he was interrupting my day. He called to let me know I was important to him, catching me up on the family. He called just to tell me that he loved me. I am forever grateful that he showered me with love.

Any time of the year, my husband, Emory, will bring small gifts home to me. Be it a few pieces of my favorite chocolates, yogurt with fruit or other favorite snacks, it is his way of showering me with love.

“Love is patient, love is kind, it does not envy. It does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails.” 1 Corinthians 13:4-8

At a time when we seem to focus more on who and what we hate, I am reminded of my responsibility to love others. There is no scripture that I can find that tells me I should practice being loved but many instruct me to practice love. The practice of loving others can be hard work. It may take forgiveness, understanding, sharing, and time. It may even require being disappointed. The act of loving others does not require liking them or hanging out with them. They can be strangers that we may only see once in our lives. The expression of love can take many forms, be it a gift, letter, card, text, phone call, dinner, a visit, a smile, or a greeting.

I pray that we learn to give love without expecting anything in return.

Beginning in December 2024, I began writing a monthly column for Inspirations for Better Living Digital Magazine. The name of the column is Empowering Families and Individuals with Disabilities. February’s inspiration is titled, Love with Intention. Currently, you can receive a free subscription for all editions in 2025, in addition to the previous forty-five editions of the magazine. This offer expires on February 28, 2025.

To subscribe, go to Inspirationsforbetterliving.com. Click on the Full Version. Click on the Subscribe for 1 Year button. At Checkout Payment Method/Order Summary, click on “Have an e Coupon?” Enter 4Q9AOTVFDK77.

Please feel free to share the subscription information with others who may be interested.

I’ve always considered myself to be an introvert. When I was younger, I enjoyed making friends but only a few who were quiet like I was. I liked people but enjoyed quiet time alone. As a teenager, I spent so much time alone that my mom would sometimes call for me to come downstairs and get outside. My hobbies were writing poems, listening to music and figuring out the lyrics of each song, sewing, cross-stitching, and baking. I spent hours drawing fashions that I dreamed I’d share with some of my favorite female singers and groups. Diana Ross and the Supremes, Martha and the Vandellas, and the Pointer Sisters would have looked absolutely amazing in some of my designs. Or so I thought.

In high school, I had a select group of friends who I’d run around town with and talk on the phone with, but I enjoyed my alone time. Though I was encouraged by classmates to join the cheerleading and majorette teams, instead I joined our school’s newspaper and French clubs. Although I appreciated the company of others, I never regarded myself as socially outgoing.

Years later, when our daughter was diagnosed with autism, I realized that I had much to learn. As I began to reach out to state agencies and organizations that support individuals with disabilities, I knew I had to change for the sake of our child. While I had a desire to withdraw and isolate myself further, it was no longer a luxury I could afford. To grow, learn, and enhance the quality of life for our child and others, I needed to connect with others and build a network of relationships.

For years, I’ve taught a program for parents of children with disabilities regarding planning for transition out of high school into adult life. One of the topics discussed is determining who is in the child’s relationship circle. A relationship circle helps to understand the network of relationships that a person has (no matter how small) in his or her life. It also helps to expose the lack of friends and supportive persons. Nurturing meaningful relationships can help to ensure that others are involved in the disabled person’s life, in order to provide care, friendship, and supports that the individual may need throughout life.

In class, parents are given a handout with a diagram of several circles. The innermost circle includes the child’s name. Each of the outer circles are designated for the names of family, friends, acquaintances, and other people and organizations that support the child at home, school, church, camp, recreation, community, etc. Parents are instructed to name individuals who play an important part in their child’s life and development. It never fails to be a difficult assignment. Many times, parents only write their names and maybe siblings and grandparents names in the first two circles. Some may write a teacher, therapist, or doctor’s name in one of the circles, but it becomes more and more difficult to complete the diagram any further. It soon becomes obvious that we must continue to meet and find others who can help nurture and support the individual.

When going through the process of applying for a support waiver for your child with a disability, as he or she becomes an adult and need supports at home and in the community, the agency that processes the application will ask you to complete a relationship circle. It is used to determine gaps in support needs. The goals will include what the individual is interested in doing and who will help. It’s never too early to start working on your child’s relationship circle.

Recently, I was asked to speak about the importance of building community which I’ll share more about in a later story. Community isn’t a place or a building. It is about finding and maintaining relationships with like-minded individuals, those who have common needs and interests. Connecting with community has helped me to understand that I’m not just an introvert but I’m also capable of social interaction, making friends, helping others, and continually learning new things. Anyone who knows me can testify that I found my voice and enjoy talking, also.

Building relationships takes time. Relationships play a major role in our wellbeing and helps us build a more meaningful, happy, and fulfilled life.

Who are the individuals your child requires and desires within his or her relationship circle?

Wandering - When someone who requires some level of supervision to be safe, leaves a supervised space and is exposed to potential dangers.

On November 18th, I recounted my personal experience of our adult daughter, who has autism and an intellectual disability, wandering away from home. I promised to share some of the things we did at home, to decrease the chances of her wandering, as well as additional resources. Prior to that experience, Kendra has not been known to leave our home without supervision. When she’s in the community, she stays close to her companion and doesn’t wander away. She doesn’t show much interest in being outside, unless she’s sitting on the patio with someone, walking in a park, or leaving home in a vehicle. I haven’t been able to convince her to help me weed or work in my flower gardens. It’s just not her thing to hang outside when she’s at home.

I think that her main reason for eloping from our home in the instance I previously described was to retrieve an item that was placed in our outdoor trash. As are most individuals with autism or other disabilities, she can be quite determined when she wants something.

It’s difficult to put into words the fear I experienced when I realized that Kendra was missing. Since she’s nonverbal that made it all the more terrifying. I’m certain that I speak for many parents in that one of our greatest fears is the possibility of our disabled loved ones being taken advantage of. Research indicates that 90% of people with disabilities will experience sexual abuse at some point in their lives. This is very frightening. Though Kendra has a good sense of direction and most likely could find her way back home, she’s vulnerable to being physically or emotionally wounded. If she were harmed in any way, she would not be able to communicate what happened. If someone did offer aid and she had no identification on her, it could delay her receiving proper care. She’s unable to use a phone, without assistance. If law enforcement is involved, there is the chance that they may not be familiar with how to identify someone with a disability and may either arrest her or respond inappropriately. The longer the individual is missing, the greater the likelihood of them encountering danger or even death. The one instance of Kendra wandering the neighborhood was enough for us to take steps to safeguard our home against such behavior.

All of our doors that lead outside already had deadbolts that require keys to unlock. Over each door, we installed a door alarm, which chimes loudly when a door is opened. The time that she was found wandering the neighborhood, Kendra was aware that our doors were locked so she opened a window, slashed the screen and climbed out. Now we have keyed locks installed on all of the windows that she has access to. Our keys remain on our persons at all times, except when we’re in bed for the night. Since she is able to determine which keys fit which locks, we take precautions to deny her access to our keys.

The door chimes and window locks were purchased on Amazon, which has an array of choices and price ranges. Home Depot and Lowes sell similar products, as well as some hardware stores. You can also buy chimes for windows and doors that allow you to know when someone opens a door or a window, without them being able to hear the alarms. They operate similar to baby monitors. You can place the receiver in your bedroom or other convenient place, so you’ll be able to hear it when a door is opened.

Another thing I did was to email several neighbors and my fellow homeowners association members, letting them know about the incidence. I shared a recent picture of her, asking them to contact me, if they were to see her unaccompanied in the community. The police officers who came to our community, after a neighbor called them informed me that they would keep a record of what happened, in case they received a call about Kendra in the future.

Resource links: www.cops.usdoj.gov, www.nationalautismassociation.org, www.autismspeaks.org, www.connectingforkids.org

Parents can go by your local police precinct or fire department, to share information about your loved one. In most cases, when police are called to a community, the nearby fire department may come to the scene, since their usually train firefighters to work as emergency medical staff. Nationwide, community members have an option to establish Community Oriented Policing Services (COPS) in their neighborhoods, free-of-charge. The purpose of COPS is to create collaboration between local law enforcement and communities, establish trust, address issues, and reduce crime challenges.

The National Autism Association provides The Big Red Safety Box, a free-of-charge toolkit given to autism families in need as a means to educate, raise awareness and provide simple tools that may assist them in preventing, and responding to, wandering-related emergencies.

An adult individual who tends to wander and drives a vehicle may obtain a license plate that allows law enforcement to determine that the driver has a disability. It may be important for law enforcement to be able to identify that the driver has a disability, in case of an accident or traffic violation. This is especially the case, if the individual has limited oral communication skills. To inquire, contact your local department of driver services.

The Autism Speaks website offers a lot of information regarding wandering behaviors and prevention measure that can be taken. The website includes a list of products that are available to help prevent wandering and offer protection. There are various resources, such as a Neighbor Alert Letter, Autism Elopement Form for First Responders, a School Alert/Individual Education Program (IEP) letter, and a safety log that allows you to track incidents.

Hopefully, you’ll never have to worry about your loved one wandering but in case you do, I hope you find this information helpful

Please feel free to offer comments or submit questions.

A friend of mine recently questioned if she was searching correctly, as she no longer receiving my new posts on Substack. I had to admit that I haven’t been sharing as of late. My apologies for missing in action but it’s been a difficult two and a half months. No matter how many times I’ve sat down to write, I ended up eventually closing my laptop with only a few words on the page.

Anyone who’s ever spoken with me know that I’m not usually at a loss for words. According to Gallup’s Strengths Finder online test that I took several years ago, some of my most notable talents include the abilities to empathize and connect with others. While I’ve always had the capacity to put myself in someone’s else’s shoes, to have compassion and be open to differences, I’m thinking that maybe I haven’t given myself the same grace. I’ve expected myself to be strong and just keep going, no matter what.

When you look back at 2024, have there been moments of grief and heartache in which you only gave yourself a moment to acknowledge and then you put on your strong face and going? Did you allow yourself the same kindness, care, and support that you may have offered to someone else?

Some of us have endured the pain of letting go of our childhood homes that we grew up in, with years of happy memories inside those walls. My siblings and I sold our parents’ home this year. We’ve eaten countless Thanksgivings and Christmases there, had many family members and friends spend the night, played in the backyard or down the street or at friends’ homes, visited our nearby park to swing and play ball, walked to our school bus stop and bought candy at our neighborhood store. We watched our parents grow old there and gathered for years after, to eat, sing Karaoke, play games, dance, laugh, and share memories. How I miss that old house and gathering spot.

Some of us have said goodbye to friends. I said goodbye to three girlfriends this year, one moved far away, and the others passed away. One after another.

Even more difficult, some of us have said goodbye to loved ones. In the past two months, I’ve called friends to let them know that my brother passed in October. To my surprise, one lost her mother four days after my brother left and another lost her adult daughter, an only child. During the same time, my sister had several close friends who lost either a husband or a child.

Today, I spoke with a friend who, despite the holiday season, was not feeling so merry. This time of year brings memories of all those close to her that are no longer in her life, her parents, a sibling, and others. She was thinking of the holidays they had together that are no longer possible. What a lonely thought that conjures for many of us.

“Grief is the price you pay for love.” Queen Elizabeth

If I haven’t depressed you by now, I hope I’ve helped you give yourself a little empathy, if you find yourself feeling sad or lonely at the end of this year. Don’t be hard on yourself and take the time you need to give yourself a little love and care. Be patient with yourself and allow yourself to feel whatever you feel.

As I was trying to figure out why I’ve been having such a hard time writing, I researched to find out if it could be related to grief. Grief can affect memory, cognition, and the ability to focus on everyday tasks. While some may find getting out of bed, taking time for personal hygiene, eating, going outside, and others tasks difficult, mine has been the ability to concentrate long enough to finish a story. I’m grateful that I’ve finally finished this one.

If you’re feeling melancholy or alone this season, know that you are not alone. I hope that soon you’ll find more to smile about than be sad. I look forward to sharing with you in the coming months. Thank you for your patience.

Wishing you joy and hope in 2025.

If you need support, there are numerous websites, podcasts, grief groups, and other resources that may prove beneficial. Find resources at local churches, Salvation Army, and various websites, i.e. www.whatsyourgrief.com, www.grief.com, www.aarp.org, www.betterhelp.com