Melissa Wakefield

@mwakefield | contributor
Mom of super special kiddo, educator, and survivor of trauma.
Melissa Wakefield

Finding Support as a Single Mom to a Child With Down Syndrome

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!

Community Voices

Grief

My 41 year old daughter died from a brain aneurysm 6 weeks ago. I found her body and I can't get the image out of my head. I start each morning by crying because I miss her so much and then I try to get on with my day. This is so stinking hard! I'm afraid the pain will never go away and I don't want to feel like this forever. I'm starting counseling next week. I sure hope it helps. I have a son with Down Syndrome (age 34) who is equally traumatized and I don't know how to help him.

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Celebrating the 'Inchstones' for My Son With Down Syndrome

Eli was in therapy for years trying to learn to sip through a straw. We did OT, ABA and feeding therapy trying to get him to learn. Last year around this time, a little after he turned 5, I gave up trying at home, and I’ll admit I kinda gave up on him. He still had his honey bear cup every day with his smoothie, but he learned to just squeeze it to get the smoothie up the straw. We eventually stopped therapy when he started kindergarten in the fall. We had put so much time, sweat and tears into it with what seemed to be zero results. I remember when I got his diagnosis, I promised myself that I would never compare him to typical peers his age, but I found myself comparing him to other kids with Down syndrome, years younger, who were doing things before him without any therapy. Then last week one of my girls started screaming to come quick. Eli took a sip of her drink like he’d been doing it his entire life. He did it on his timeline, not on mine or a therapist’s. He’s taught me so many life lessons and I’m so grateful for all of his progress — from the tiny inchstones to the giant milestones.

Community Voices

What brings you the most comfort when you're feeling sad?

<p>What brings you the most comfort when you're feeling sad?</p>
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What I Want New Parents of Children With Down Syndrome to Know

Happy Down Syndrome Awareness Month! I am often asked what I would say to new parents and parents of younger children with Down syndrome. Twenty-one years later, this is what I would say. I want to start by saying congratulations. You are not alone. You have a tremendous support system in the Down syndrome community and beyond. Keep that tucked in your heart and mind. I do not remember who said it and I know it is cliche, but when my daughter was born someone told me, “treat her as much like a typical child as you can.” That is one of the most meaningful things anyone has said to me, and that is my advice, too. We do not have other children, but we have been around some great and not-so-great parents and through the years, we have worked with teenagers in church and the community. I tried to think like Rachel was a typical child. Clearly, most typical children are not in therapies and such, but when Rachel was old enough to go to the church nursery she did, and she was treated like all the other children. We did Mom’s Day Out and preschool — just like our friends’ kids. Time for dance and off we went to a typical dance studio. The same for soccer, T-ball, Kindermusik — whatever it was, as a starting point, we always looked for typical activities where she could be included. It was not bump-free, but I think it is a large part of why she is who she is now. Be educated and educate. Notice I did not say, educate and be educated. You will hear repeatedly that you know your child best. You need to know that, believe that and proclaim it. Practice it in the mirror and believe it unquestionably. When you share what is best for your child, though, you need to be educated. Go to conferences and workshops and learn from other parents and adults with Down syndrome. Utilize dependable online resources and study the research. If you educate yourself, you will be able to educate others. Those others may be family and friends, and they may be teachers, doctors, and other professionals. You will be able to call the coach, teacher, or preschool director and tell them about your child and help them know how to work with your child and some of the research behind what works. Find a support system with real live people. Facebook and social media outlets are nice, but try to find some real people who have walked or are walking in your shoes. If you live in an area and there are not many folks with children with Down syndrome, find someone with a child with another disability. You will have many things in common, and you will need them. They will tell you about the best healthcare professionals and activities, and they will tell you about programs and resources you need. There will be a day when you want to celebrate something that your friends, no matter how great they are, do not quite understand because they do not have a child with a disability. These will be the people who will understand when your friend who has three children who all talked early, walked early and were accepted to the college of their choice at the age of three have the audacity to tell you that “you should be glad your 3-year-old isn’t walking yet. When they start walking, they are just into everything.” They will understand that words really do hurt. They will celebrate what seems mundane to many parents, and they will hold your hand and listen when you are just tired of it all. They will also be the people that join you in advocating for systems change right where you are. It is OK to have a pity party — as long as you do not stay stuck there. In fact, I highly recommend a good pity party from time to time. This journey is not for the faint of heart or weak, so from time to time you need to have a pity party, pamper yourself, whatever. Then, look in the mirror and say, “Time to be over this pity party. I have things to do.” Now, go do it. As an aside, be in tune with your emotions and if you find yourself stuck, seek help. There is no shame in that. Most likely, there will not be irreversible harm and your child may even thrive if they miss a therapy session. It is OK to act like other people sometimes. It is a holiday break, so take a break and do not feel guilty. Want to punt it all and head to the zoo because it is pretty outside? Do it. Give yourself permission to not be perfect. Have high expectations and share those with others. Yes, you will have a few people on this journey that will not get it. You will also meet people on this journey who want to get it and need you to show them how. Think about where you want this precious child to be at 18, 21, or 25. Remember, your child is valuable just because he or she is and not because of anything he or she does or doesn’t do. Every single one of us has strengths and challenges. When I found out by prenatal diagnosis my daughter had Down syndrome, I remember thinking “she will never be an Arkansas Razorback cheerleader.” Of course, I did not really know that. It was just my perception. More importantly, I wasn’t an Arkansas Razorback cheerleader either, and my life has been pretty good. Finally, laugh. Laugh at yourself. Laugh at and with your child, your spouse, your friends. Laugh at others and I do not mean in a disrespectful way. A little self-deprecating humor can keep you balanced. When I was pregnant with Rachel, my husband Jonathan had colorectal cancer. We were about six months into both journeys, and he was in the middle of his chemo and radiation regime. Our beloved Beagle Festas got this hacking cough. Festas was on a heartworm preventative but a persistent hacking cough can still be a sign of heartworms in a dog. After listening to him hack half the night, Jonathan looked at me and said, “You should probably take Festas to the vet today. With our current luck, he probably has heartworms, and I do not want to be the next big country music hit: I have cancer, my baby has Down syndrome and my dog died.” We fell out laughing. Enjoy the journey. If I have learned one thing from my Rachel, it is that there is joy in the journey. Twenty-one years later, that is what I would say.

Rebecca Sheriff

The Reality of Having No Support System When You're Chronically Ill

Everyday problems turn into disasters when you’re chronically ill and have no support system. Living in the Northeast, you expect significant snowfall at times during the winter. Having grown up in that part of the county, I was accustomed to this seasonal annoyance. It was only after becoming ill I realized how I had taken for granted my ability to handle the requirements of functioning throughout a snowy winter. After one particular snowfall, I realized just how challenging living alone with a chronic illness had become. As my illness had progressed, figuring out how to accomplish daily living activities, such as taking out the garbage, became a weekly project. When the weather turned cold, the projects became more daunting. I’d watch the weather forecast with dread, knowing if it snowed enough, I’d be trapped inside my house for days, unable to shovel myself out. Perhaps I could swing one expensive grocery delivery, but my mental health would struggle, being trapped in my small apartment and eventually, I would have to leave the house. I had a long hilly walk up a driveway to get to where my vehicle was parked. I’d buy ice melt in small quantities that I could carry and sprinkle down the driveway as I held the side of the house with my other hand for balance. After one snowfall, I made it up the driveway to my car only to see it was covered in more snow than my wipers or my body could handle removing. Occasionally, I had asked an acquaintance for help shoveling enough snow so I could pull my car out. However, I was becoming extremely uncomfortable asking for help from virtual strangers. Especially when what I needed help with wasn’t that much. The snow on my car this time was not overwhelming, not much more than a five-minute job for someone in good health. However, it felt so hard having someone come all the way over for five minutes, while I stood there and watched, looking like an able-bodied person on the outside, but my body unable to handle simple tasks on the inside. With little family or friends, I felt truly helpless. It was the ultimate frustration — being only 40 years old, of sharp mind, but unable to leave the house because of some snow on my car. I spent a day calling around to every local social agency, but there were no services to help the disabled with snow removal, unless maybe, you were a senior. I didn’t have any neighbors to ask for help as well-meaning people who didn’t have a chronic illness suggested I do. No one could really understand just how it felt to be stuck. I called snow removal companies as a last resort. They could not remove snow from my car due to insurance restrictions. So, I took to Facebook, contacting ads posted by strangers to do snow removal. Random folks looking to make extra cash. I felt desperate as I talked to shady people trying to charge me $50 just to remove snow from my car, even after I had mentioned I was disabled. Another insisted on knowing my address before they would even talk about prices, which further creeped me out. Others said they would be right over and never showed up. I sat in my apartment drained from crying, feeling empty, as if the loneliness I was living in was a hollowness inside me. I couldn’t shake the feeling my life was so precarious. That just surviving was taking up what was becoming entire days. Figuring out how I’d carry groceries into my apartment with minimal pain repercussions. The next week’s trash day always in the back of my mind. How’d I’d be able to get the laundry done. Phone call after phone call to qualify for programs, get through to doctors and get prescriptions refilled. If your entire existence is just about surviving, what was the point? There was no joy, no comfort, no soothing words coming from anyone. Just me, a list of things to get done and time. I felt left for dead. I put out a desperate cry for help on Facebook and received no response. The realization no one I knew could take five minutes to help me felt as painful as if everyone I knew had come and stabbed me in the back with a literal knife. The salt in the wound was when hardly anyone even offered a word of support or an inquiry, wondering if I was still trapped. What was I going to do as my illness progressed? What would I do if something really bad happened, if a disease like cancer struck? The answer was I would be handling it absolutely alone, emotionally and physically. This wasn’t about the logistics of getting tasks accomplished, it was about the pain of being totally abandoned by society. With nothing left to do, I just wrote it all down. Really just for something to do. It didn’t bring me comfort to bring life to my pain. For me, no catharsis comes from expression, it just makes it all the more real.

Kala Allen Omeiza

Finding Bliss as an Autistic Black Girl: I Matter Too

I wasn’t smiling for much of my time at university. Last week I was tasked to give back to the Black community after winning an alumni award at my undergrad university. Already several years out, I reflected on my experience during my time there. I struggled to attend many events because they often felt too noisy, crowded or bright. I faltered in minor chit chat during the few events I did attend. At the time, I didn’t know I was autistic, but I knew I was different. I hid my budding afro and masked my real identity. It took a while for me to find my footing, but when I did, it was bliss. Years later, I finally received a referral and a diagnosis, and I joined various groups of people like me. I was accepted into other prestigious universities and fellowships before I was diagnosed, but had a wonderful time living them out due to my own self-awareness after the diagnosis. I made friends all around the world, learned so much about myself and the world around me through novels and traveling, and — of course — grew my afro. I’m happy that most autistic social groups accept those without a formal diagnosis, with the hope that people like undergrad me could find them and experience bliss much earlier. However, while discovering myself as an adult, I often misread the room and spoke of intersectionality in Black communities with disabilities. I did this when I was supposed to speak of just Black communities — as if autistic doesn’t exist with Black. With rain, often, comes a rainbow, and all of my temporary rains were all it took to create mine. With the joy of my authentic self, I finally drafted the following as a campaign to my undergraduate university: We Matter, Too When you think of Homecoming and High Street, corners, panic attacks, and isolation aren’t usually words that come to mind. These words were my reality, however, and after receiving feedback on a blog post from other autistic young adults, I know I’m not alone. Balancing a Black student identity on a campus like Miami can be full of challenge, excitement and can even create amazing lifelong friendships. On the other hand, students with intersectional identities such as disability or mental illnesses may take longer to find their niche. It’s time we create a campaign to bring out the voices in our communities who may not feel as included in their minority group on campus. Through your essays and artistic submissions, let’s build a platform for all of us to connect and seek ways of how we can better unite and stand for all BIPOC at Miami more than ever before. I hope other universities (and even middle schools and high schools!) will implement similar campaigns. I hope this campaign can enable just one more autistic (diagnosed or not) Black girl to read about herself and feel seen. My voice may feel soft and thin, but my afro is coarse and thick. Because of “We matter, too,” I hope even just one more autistic Black girl will smile during university.