Some days, I get tired of being judged. Some days, I get tired of people looking at me like I should jump in to help my child. I can see in people’s eyes that they think I’m a bad mom. I can see that it would be easier for them if I stepped in and took over. I can see that they are watching my child and me, and judging us. When my child with Down syndrome was a baby, people would say to me, “Aren’t you so worried about his future?” I would say, “I’m also worried about my other children as well. But I’m not going to let my fear of the future control today. And I try to take things in stride.” When my child went to elementary school, I stood up for him and his educational needs. Other parents would say to me, “Are you not worried about the teachers getting mad or upset with you?” I would say, “I am my child’s voice. I need to stand strong for him.” In junior high school, people would say, “Aren’t you worried about your child getting bullied or having a hard time?” I would say, “This is the real world and kids need to find their place and belong. The other students need to learn from him too! They will learn patience and kindness, and how everyone is more alike than different.” In high school, people would say, “Why isn’t your child doing life skills?” I would say, “That’s my job as a parent. We do chores, laundry, and cooking at home. School is for education, sports, and growing strengths and talents.” Now as my child is becoming more independent, I need to let him go and try new things. There are people in the neighborhood who look at me like I’m too lenient, allowing my young adult to walk to the store by himself on a regular basis. But the thing is: young adults with disabilities will be walking around the high school campus by themselves. They will be walking around a college campus by themselves. They will be at a job by themselves. They should be out in this world walking around by themselves, just like everyone else! They deserve to be thought of as a valued part of society. And they need to try new things! We know that there will be failures. We know that some days will be harder than others. But we’ve got to keep trying. I can’t be a helicopter parent, hovering over my child all the time, doing everything for him, and then expecting him to succeed without me. I can’t expect to do everything for my child, and then expect them to be able to do it by themselves. I have to let him go alone if I expect him to have a job. I have to let him cook if I expect him to cook at his apartment. I have to let him stay home alone if I expect him to live independently. I need to let go in a safe place. I need to let him have the dignity of risk, and to try and make mistakes. I need to let him fail and help him grow from his life lessons. Some days it is hard being judged and watched — but it’s worth it!

I was 46 when I found out I was pregnant.  I was pregnant when my oldest child had just given birth to her first kiddo. I was a grandma and still had 11- and 13-year-old boys at home. I was teaching at a state school in a behavioral disability classroom. I thought I was nearing the end of my teaching career. My husband tried to talk me into an abortion. I couldn’t see why. We had raised his daughter and were still raising our two biological boys — we could add another child to the mix. We were employed and housed, and we could be parents again. I asked not to have an amniocentesis since I was almost three months along before realizing I was pregnant. When our daughter was born, I knew she had Down syndrome. The hospital said she was “fine” and sent us home after one day. They would only share that she had jaundice. I knew this wasn’t right, though. Her fingers and hands were blue, and her eyes were clear. I took her to the pediatrician, who immediately put a pulse oximeter on her and found out that she was deprived of oxygen. I spent the eight days that my daughter was in the NICU at Children’s Hospital praying. Once doctors found three holes in my daughter’s heart and gave her an official Down syndrome diagnosis, we were released home. Fast-forward three years. I found myself driving in the middle of the night, windows down, -6 degrees outside. My 3-year-old girl was in the back seat. We had no clothes, no diapers, and no place to sleep. My husband of 24 years had asked for a divorce, and when I refused, he had insisted. I found out later that he had planned for months to divorce me behind my back. I was a single mom — and still am six years later. We survived the below-freezing weather that night with the help of my family 3000 miles away. I lived through the divorce, but my two sons chose to live with their dad instead of with me. I lost my career of 14 years because we lived in my husband’s county since his discharge from the Marines. I had survived moving across the country, getting another job, and living with my parents for a year at age 50. I lived through moving back across the country, knowing I would be alone without any support because my boys’ father was abusing them, and I thought I could help. I got another teaching job and bought a house on my own with no one’s help. I was five years past my 24-year marriage when COVID-19 hit. I was told I had a week to put all of my coursework online and begin teaching my students. My daughter’s school told me that I would need to teach her from home. I did all of this, and I didn’t ask or get help from anyone. Her father had fought hard not to have any custody or pay any child support, so I was on my own. I had chosen a home in one of the areas with the best schools in Missouri. I soon learned that this was not the case for students with disabilities. COVID-19 was a nightmare. They shut down the school for three weeks but came back after summer break as if nothing had happened. Masks were optional. As a mother of an immunocompromised child, I was panicked. Thinking about what would happen to my daughter if I were to get sick terrified me. I went into overdrive. My “fight or flight” response kicked in. I washed everything daily, and I kept bottles of bleach all over my house. If my daughter got sick, I would have to stay home with her, and if I got COVID-19, we might die in the house, and no one would know. The neighbors would not be of help since they didn’t think it was a big deal. People began dying — students, aunts, uncles, and cousins. It was a nightmare, but I felt I had been living one for years already. Then, two years into the pandemic, my stepdaughter was murdered by her live-in boyfriend of 14 years. I broke down. I called a psychiatrist for help. I realized that my friends and family had had enough of my life. I certainly had too. It was the best thing I’ve ever done. Talking to someone without skin in the game is freeing. You can say anything, and they won’t defend or scold you. My psychiatrist didn’t solve my problems,  but she helped me sort through them in a calm fashion. I’m still dealing with my child’s lack of inclusion in a state where things could be a heck of a lot better — but I have someone in my corner now. I know I’m doing the best I can for my little girl and the thing is, she doesn’t care about the struggles. She loves and laughs every day. When she’s old enough to understand, I’ll tell her everything. Parenting is a role that never ends, and we often have to just keep on rolling with it. I just try to roll forward. To all my fellow single moms with children with Down syndrome, keep rolling on. You’ve got this!

How many teens or 20-somethings get to do something so consequential that it raises hopes, dreams, and possibilities for millions of people, while changing society as a whole? Two young, seasoned actors who happen to have Down syndrome are doing just that with their new Hallmark movie, “Color My World With Love.” This is the first Hallmark movie to feature actors with Down syndrome in lead roles. Lily Moore, age 19, has been acting since 2014 amassing over 23 acting credits. She is best known for the Netflix series “Never Have I Ever” where she plays Rebecca. Lily started acting classes at age 6 because several medical conditions left her unable to participate in physical activities many children take for granted. To date, she has had 11 major surgeries. Lily took to acting right away, and it wasn’t long before it was obvious to her family and others that she was a very good actress. Lily is also an experienced model. She learned early to make the most of her talents and always has a positive and strong attitude. Lily’s mantra is “Everybody has an inner star. No matter what it is, find it and let it shine.” She is a senior in high school and lives in the Atlanta, Georgia area. David DeSanctis, age 29, is best known for playing the role of Produce in “Where Hope Grows” in 2014. He was the first actor with Down syndrome to star in a nationally distributed film. David’s outgoing and witty personality was well known in his hometown of Louisville, KY. The producers of the film were searching for someone exactly like David, and were steered his way by David’s community. The rest is history. David is a national public speaker who has presented to audiences all over the country displaying his love of fun, dance, and witty sarcasm. He also uses his presentation skills to advocate for people with disabilities on a national level. David still lives in Louisville, KY. David and Lily’s parents are extremely proud of their children and this movie. Their children have worked hard to get to where they are. They are so excited to see the barriers that will come down when those with disabilities see this movie — and what can be. Lily Moore burst out in tears when she got this role as her dream of a leading role was coming true. In a statement after filming, she said, “Everyone has a dream to fall in love and get married one day, even people with disabilities. I hope viewers take away that ‘Color My World With Love’ is about painting your own story through your emotions and that we all have endless possibilities.” David DeSanctis was grinning and jumping with joy when he got this part. After filming the movie he said, “I just had an awesome time making this movie. I became friends with a lot of very special people. I hope everyone who sees the movie will realize, with the backing of good, caring family figures, they can accomplish amazing things in life.” “Endless possibilities” and “accomplish amazing things in life” are goals millions of people with disabilities can now see just a little bit clearer. They are also facts that our broader society will see on their TV screens, which in turn will organically break down centuries of stereotypes. Representation matters! “Color My World With Love” premieres June 12, 2022 on Hallmark Movies & Mysteries Channel.

Most parents don’t think about talking to their children. They just do it. They teach them to talk, what words to say and not to say and in time their children speak to them. As a parent, it is natural to have fears for your child, but one of them is not usually, “Will I be able to communicate with my child?” I was no different. Even after knowing Olivia might have Down syndrome, it never crossed my mind that we wouldn’t be able to communicate with her. Even after confirming that Olivia had Down syndrome at birth, it never crossed my mind that we wouldn’t be able to communicate with her. However, that is a very real struggle my family faces every single day. Olivia is going to be 3 this year and although she is still very young, her ability to communicate verbally is not there. We as a family are learning how to talk to Olivia using sign language. It is new and challenging but interesting and exciting. We teach each other new words as they come up and learn to use them in everyday life, especially when communicating with Olivia. My oldest daughter Haydenn, who is 11, was teaching Olivia how to sign “I love you” and I was amazed watching them. Olivia couldn’t do it correctly, which was not surprising because a lot of her signs are what we call “approximate,” which just means the sign she’s doing is close to the actual sign. I was inspired by their interaction to write a story about Olivia and her sign language. I wanted to teach people, especially kids, that children with Down syndrome can and do struggle with the ability to talk, but that this doesn’t stop them from learning to communicate with their families. And in no time, “Outstanding Olivia” was born! My Olivia is outstanding to say the least, and so the title came easy to me. I included my whole family because we are all in this together and we work hard to help Olivia. I have high hopes of writing more books someday soon and always including signs in the books to teach kids. For now, I want to share this book with as many people as I can to raise awareness for Olivia and kids just like her! You can buy “Outstanding Olivia Says, ‘I Love You'” on Amazon.