Michele Rosner

@michelerosner | contributor
I am the proud momma of four teenagers, including a daughter with multiple disabilities and complex medical challenges. I launched my blog (www.differentkindofspecial.com) to help others find more joy in the journey of raising a child with disabilities.
Michele Rosner

Gift Guide for Teens With Intellectual and Developmental Disabilities

When your child’s development does not match what is typical for their chronological age, it can be challenging to find age-appropriate gifts that they will truly enjoy. That’s especially true for tweens and teens with significant disabilities. My daughter Julia is 18, non-mobile and non-verbal. Developmentally, infant and toddler toys are most appropriate for her. But, she’s a teenager and her patience for musical, light-up toys is running out. Over the years, I’ve frequently shed tears of frustration in the pursuit of just the right gift for Julia. It’s important to me to find a gift that reflects my love for her and makes her happier. All of that pressure to find just the right thing caused unnecessary anxiety and sucked the joy out of the gift-buying experience. I want gift buying to be something I look forward to doing rather than being frustrated or overwhelmed. To add some happiness and excitement back into gift shopping, I’ve learned to look beyond toys and games to find gifts that are both age and developmentally appropriate. The best gift ideas for my teen can typically be found in one of these areas: Experiences – With quarantines and shut-downs, we’ve found it challenging to make sure our daughter can have safe experiences outside of our home. But, with a little creativity, we’ve found some ideas that are safe, fun, and often inexpensive as well. Here are some ideas to consider: Zoo pass or membership Drive-in movies Drive-thru Christmas light displays State park pass for trail hiking and walks Botanical gardens Room décor – What young adult doesn’t want a bedroom that reflects their personality? You can do a complete makeover that includes painting walls, setting up new organization systems, and outfitting the bed with a new comforter and sheets or a smaller scale project, such as adding a new string of lights, throw pillows, or a beanbag chair. Whether it’s a total transformation or a smaller project, tweens and teens usually appreciate an update that makes their space feel more comfy and cozy. Personal care – Think about those little splurges that make day-to-day life a little brighter. Some ideas include: scented lotions, fuzzy socks, hair products, lip balm, massage pillows, weighted blankets, bath bombs, and essential oils. Subscriptions – My daughter enjoys music and movies, so subscriptions to music and TV services are gifts that she can enjoy all year round. Also growing in popularity are subscriptions to themed boxes, which can be a wonderful monthly surprise. Check out subscription boxes for items such as books, sensory kits, craft projects, and more. To help find some tried and true gift ideas, I’ve created a gift guide with ideas that have been hits with my daughter. Check it out for links to unique gifts that could be a new favorite for your tween or teen. Another gift-buying strategy that works for me is to keep my eyes and mind open to new ideas all year long, and then make sure it’s easy to save gift ideas as I see them. I’ve created a Pinterest board and an Amazon wish list to track possible gift purchases. When I see a great idea in a Facebook post or during a discussion with a therapist, I just pin it on the board or add it to the wish list so it’s easy to find when I’m ready to shop. Finding just the right gift for someone I love fills me with a sense of satisfaction. With a few simple strategies, I’ve reclaimed the joy in holiday shopping for my daughter with developmental disabilities. By sharing these ideas and the gift guide, I hope others can put a little extra magic into their holiday season. Find more great ideas at The Mighty’s Gift Guides for People With Disabilities.

Anne Hefty

Dear Herd: Please Help Protect My Immunocompromised Child

Dear Herd, I have been watching the coronavirus (COVID-19) news closely. As the virus immobilizes and polarizes my home state of Wisconsin, I am also watching the reactions of people in our community to the spread of a transmissible disease. What set off my five-alarm, gut reaction to the recent news of coronavirus spreading like wildfire around the globe is the same thing that terrified me when there were unvaccinated pockets in our country that experienced the resurgence of a previously snuffed-out disease, like the measles. My daughter has a significantly compromised immune system and when she was younger, she wasn’t able to be fully immunized. Because for her, the live vaccines actually presented a threat to her already struggling immune system. Thus, she was far more susceptible to the viruses because she was unvaccinated and had a compromised immune system. Even before the coronavirus, I was never far from the latest news on viruses and vaccinations or a bottle of hand sanitizer. We are all part of the same herd, but the truth is that parenting my healthy firstborn child and parenting my daughter are about as similar as riding in an airplane and jumping out of one. I readily admit I would never understand the importance of herd immunity, germ protection or social distancing if I wasn’t the parent of a child with a rare disorder. My daughter was born fifteen years ago and I still have a jewelry box of her little hospital bracelets, the size of pinky rings — reminders that we actually survived when it seemed like we would all perish from exhaustion, from silent surgery waiting rooms and the unbelievable way you have to cling to the earth when it has turned upside down. So I understand that the public is new to grasping what it means to manage risk and to avoid germs. I understand that until right now, the idea that there are people in this world who could be quietly carrying germs that are dangerous to you or your loved ones is a foreign concept. I have had years to get used to risk-management. I’m used to thinking about germy surfaces, travel choices and the risks of large gatherings. Now? I am watching as our country is getting a taste of what our lives have been like, and what it feels like to be vulnerable to the choices of others who carry contagious diseases. After grappling with a mix of emotions for the last seven weeks, I have finally found the right words to describe my state: fearful and furious. My daughter is immunocompromised due to a chromosomal deletion, 22q11.2, which causes a long list of complications. Her lack of immunity to the germy, wide world has always been on the forefront of our parental responsibility. Quite simply, just as vaccination is successful by getting the majority of the people to protect the minority, so too are germ prevention measures imperative to protecting our community from COVID-19. As Eula Biss writes in her book called On Immunity: An Inoculation, vaccines protect the minority of the population that “is particularly vulnerable to a given disease. The elderly, in the case of influenza. Newborns, in the case of pertussis.” And as I envision my daughter, in the case of everything. I think of her and feel a rising fury as the news bleats repeated warnings about the spread of the coronavirus and about people who have disregarded their quarantines, who continued to travel despite warnings, who are upset by the cancellations of sporting events or the maskless masses protesting the “Safer at Home” order while marching shoulder-to-shoulder around my state’s capitol. The same disconnect that allows people to feel they have an individual choice in vaccinating is the disconnect that scares me with the coronavirus. Although the public has a “choice” to self quarantine, to travel, to comply with social distancing recommendations or to attend large gatherings, I worry because the health of so many communities and people depend on the choices of those who perceive themselves to be healthy, immune, unafraid of coronavirus — in other words, independent of a herd. When large numbers of people in our community fall ill, we will know that pockets of the virus have been brought directly into our area. At that point, it will be too late to protect the weakest members of our herd. My hope is in the days ahead, the spread of the coronavirus will slow down. If that happens and it seems like all of this fuss was for nothing, then we should be thankful for all of the people in public health, in companies and in universities who are working very hard right now for that outcome. However, I worry that my community, like so many others, will soon find ourselves in the midst of an outbreak. And the predictions for those who are immunocompromised at that point are scary. Susan Sontag, the author of Illness as Metaphor, wrote “Everyone who is born holds a dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” I would spend all I have to buy a permanent passport into the kingdom of the well for my daughter and others like her. But until I find that passport, I am counting on you. On everyone in the healthy, confident, unafraid, mobile herd. I hope my herd can put themselves in the shoes of its most vulnerable members. I hope you and your families remain part of the healthiest and safest and strongest herd, but that you don’t forget those in your herd who don’t hold that same passport to the kingdom of the well. And I hope you don’t forget that your actions — or inactions — right now will help the weakest among us. Yes, it can feel inconvenient and unfair to have to cancel events, change plans or delay reopening your business to protect our most vulnerable right now. Trust me, I know. My family lives with those inconveniences every day. But please also trust me in knowing it is worth the effort. Today marks the sixth week that my husband, an emergency room physician, has been quarantined in our basement, away from our family, in order to keep my daughter safe and to continue to treat patients. While it is not easy, it is, and always will be, worth the effort. For more on the coronavirus, check out the following stories from our community: The Problem With Saying ‘Only’ the Elderly and Immunocompromised Will Be Affected by COVID-19 What It’s Like Parenting a Medically Complex Child During the Coronavirus Outbreak Please Wash Your Hands Year-Round — Not ‘Just’ Because of the Coronavirus How America’s COVID-19 Response Is Exposing Systemic Ableism Search for COVID-19 Treatment Leads to Chronic Illness Medication Shortages

Michele Rosner

Staying Positive During Tough Times Raising a Child With a Disability

When my kids were younger, I was that momma — the one the neighbors talked about. On warm, rainy days, you could find me and my kids outside playing in the rain. Many of our neighbors are senior citizens, and they found our rain dances entertaining. For my kids, it was pure joy. For me, it was a reminder that you don’t always need sunny skies to find happiness. I love this quote from Vivian Greene: “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.” Dancing in the rain is something our family does both literally and figuratively. When you’re parenting a child who has disabilities, storms can roll into your life frequently. Our daughter’s developmental delays and medical complexities have created all kinds of storms for us. There’s been the tornado of whirling stress that comes with an unexpected illness and hospitalization. We’ve faced long monsoon seasons of trying to navigate tense IEPs, struggling to get my daughter the therapy services she needs. Dealing with insurance can feel like trying to drive through a blizzard, where the visibility is low, frustration is high and the paperwork piles up like a foot of heavy, wet snow you must plow through. I’ve learned that if I always wait for the storm to clear before I look for joy, I miss out on too many opportunities for happiness. I don’t want to limit myself to only being happy when conditions are just right. My choice to dance in the rain impacts our entire family. My daughter faces enough medical challenges; she doesn’t need my anxiety and frustration about the storms around her to add to her load. And I don’t want my kids who don’t have any disabilities to grow up in a home where everything revolves around the challenges their sister is facing or the stress I am feeling as a parent. So, we’ve all learned to grab joy whenever and wherever we find it. It has taken me a long time and a lot of practice to let go of my anxiety so I can be in the moment. Even when my medically complex daughter is healthy, I have to make a conscious decision to stop being hypervigilant. And when she’s ill, it takes even more mindfulness to remain optimistic and open to joy. An even bigger challenge is that sometimes I have to squelch the idea that it’s wrong for me to seek happiness when my daughter is struggling. A focus on choosing joy, even when we’re in the middle of a storm, shouldn’t cause feelings of guilt. My kids deserve a mom who is committed to navigating the storm and finding chances to dance rather than a mom who is always completely overwhelmed by the conditions. It might take a lot of mental reminders, but no matter how big the storm is, learning to dance in the rain benefits me, my daughter and the rest of our family.

Michele Rosner

Toy Shopping for Children With Developmental Delays

By the time my daughter was 2 years old, buying toys for her could be described as bittersweet on a good day and tear-inducing on bad days. She had reached the chronological age where a typical child would be playing with her tricycle, play kitchen and building sets. Yet developmentally she was non-mobile, nonverbal and unable to play with toys meant for kids her age. When holidays and her birthday rolled around, I found myself brushing aside my tears and gathering enough mental energy to look for just the right gift. Buying gifts for a child you love should bring happiness, not tears. But when you have a child with multiple disabilities and significant developmental delays, harsh realities can suck the joy out of something that should be fun. For me, toy shopping was a very visible reminder of my daughter’s limitations. I used to think that buying gifts for my daughter would get harder and harder as the gap between her chronological age and developmental age got bigger and bigger. But that hasn’t happened. By changing my perspective, I’ve found ways to make gift-buying a happy experience instead of something that makes me sad. Focus on what she loves — From the time she was a baby, my daughter has loved lights and music. After about three years, we learned there are only so many light-up, musical toys you can buy for a toddler or preschooler before you all reach the end of your tolerance for loud, tinny music and bright, blinking lights. Instead, I learned to be more creative. As a little girl, her love of lights and music could be nurtured with more age-appropriate toys that were switch-adapted. Now, a subscription to Spotify and a Bluetooth speaker are the perfect gifts for my music-loving teen. Make it fun to play together — My daughter’s challenges make it difficult for her to play independently. So we’ve focused on toys and activities that are fun to do with others. Maybe my daughter couldn’t build a tower of blocks by herself, but she loved knocking down the tower built by a sibling. While she can’t hold playing cards or roll the dice by herself, she loves partnering with a sibling, parent or friend to play games. Some of our favorite memories are from the days we all grabbed a musical instrument and played in the family band, with my daughter shaking an adapted instrument she could hold on her own. Get ideas from others – Some of my daughter’s favorite gifts have been suggestions from other parents of kids with disabilities. There are even Facebook groups dedicated to sharing ideas for children with specific disabilities. Even when I’m not actively shopping for my daughter, I use technology to keep track of ideas that might be a good fit for her in the future. Having a Pinterest board and an Amazon wishlist filled with ideas makes shopping less stressful and more fun when it is time to buy gifts. In many ways, finding more joy shopping for my daughter has been a result of accepting her diagnosis and learning to adjust to her limitations. These days, I’m excited to give my daughter gifts that are just right for her, and the tears are no longer part of the experience. Instead of worrying about what toys she “should” be playing with based on her age, I simply shop for things that will make her happy. I’ve also tapped into my own inner child, finding joy in playing with my daughter even when we’re playing with toys designed for a toddler. Having gone through this experience, I created a toy guide for parents of children with developmental disabilities. Over the years, we’ve had some toys that have become family favorites, and I hope you can get some ideas that will add more joy to your gift-buying experiences. Looking for great toys for kids with disabilities? Try our Mighty gift guides: 16 Interactive Toys for Nonverbal Kids 31 Awesome Gifts for Kids With Sensory Issues Cool Gifts for Kids Who Don’t Like to Play With Toys 17 Educational Gifts for Kids With Disabilities 16 Books, Games and Toys for Kids That Feature People With Disabilities 12 Items You Can Use to Create a Sensory Room How to Support Kids With Sensory Needs 9 Developmental Toys for Children With Disabilities

Michele Rosner

Overcoming PTSD as the Parent of a Child With Complex Medical Needs

Last week, my husband and I noticed we were both sleeping restlessly. After a night or two of tossing and turning, we realized our sleeplessness was being caused by the hooting of a nearby owl. Even though the owl wasn’t very loud, it turned out that this owl’s call sounded exactly like the soft, whimpering moan our daughter makes when she’s uncomfortable and needs help. So every time the owl hooted, my husband and I would startle awake, ready to rush to our daughter’s side. The harmless hoot of an owl was causing anxiety, sleep loss and adrenaline rushes in the middle of the night – even though my daughter was sleeping peacefully. I’m sure none of our neighbors were bolting awake every time the owl hooted. But, the previous traumas of many medical emergencies my husband and I been through with our daughter were causing an unusual fight or flight response for us, even though there was no danger or medical crisis. Post-traumatic stress disorder (PTSD) is a condition most people associate with soldiers who’ve been in combat. But parenting a child with chronic and complex medical needs can be traumatic. Many parents like us struggle with PTSD symptoms, which include flashbacks, bad dreams or frightening thoughts; avoidance of places and thoughts associated with the traumatic event; a feeling of always being on edge or becoming easily angered; anxiety and hypervigilance; difficulty sleeping, negative thoughts, distorted feelings of guilt or blame, and losing interest in things you usually like to do. PTSD can be a heavy load to carry. I’ve experienced quite a few of these symptoms over the years. In fact, sometimes it seems like stress has become so ingrained in my day-to-day life, I don’t always notice when these things creep in. It’s almost like there’s a background buzz of anxiety and edginess that’s just there. But I didn’t want constant stress to be my default, and I wasn’t satisfied to just live with these PTSD symptoms. So I went on a search to uncover a more positive outlook for myself and others who were dealing with the same kinds of challenges. The research about post-traumatic growth was a welcome breath of fresh air that provided a new perspective. It turns out the very thing that is the source of the sorrow and stress can also be a catalyst for positive change. In his book, “Upside: The New Science of Post-Traumatic Growth,” Jim Rendon shares that 90 percent of those who survive a trauma realize growth in at least one of these five areas: Increased inner strength Openness to new possibilities Closer, deeper relationships with family and friends Enhanced appreciation for life Stronger sense of spirituality Wow! This reinforced what I already suspected was true. We are so incredibly resilient, and often our most powerful growth comes from facing our biggest challenges. For me, this has proven to be true. I feel like my life is deeper and more meaningful because I now appreciate the big and small moments of joy more. I have a clearer understanding of what’s truly important to me, and I’m more purposeful about how I spend my time and where I focus my efforts. My daughter’s strength has given me the courage to do things that intimidate me. And our family has a strong bond that has been built by working together to face challenges and find triumph. I would never wish for my daughter to have the challenges she has to deal with, but I can’t change that. What I can do is look for the lessons in our life situation and use what I learn to be the resilient, capable resourceful, optimistic person I want to be. That version of myself is the person who can help me and my family live purpose-driven lives filled with meaning and joy, in spite of the difficulties and traumas we face.

Community Voices

Chronic Sorrow is Real, But I Won’t Let It Define Me

“Will I ever be happy again?” That thought echoed in my head over and over in the days, weeks and months after my daughter was born. When she was only two days old, she received a devastating diagnosis that included daily, uncontrolled seizures, a significant vision impairment and a life expectancy of just 6-8 years.

I was sad and angry and scared. There were times that I truly thought that I might not ever feel joy again.

Spoiler alert: I would be happy again. But, it would take time, and some changes in the way I was thinking.

Thinking about all of the things that my daughter can’t do and how that impacts the rest of our family can make me really sad. Watching her struggle with medical challenges and frequent illnesses makes my heart hurt. And, I’ve found that these feelings of grief can come in waves, sometimes when I least expect it, and certainly not when it’s convenient.

These waves of grief have a name: chronic sorrow. It’s intense feelings of recurring grief associated with ongoing loss. My daughter’s complex medical and developmental challenges have a profound and frequent impact on our entire family. We experience losses, some big and some small, every day of our lives. And, some days, I feel bone-deep sorrow for my daughter, for all of the things she cannot do and for all of the challenges she faces every single day.

Yikes! That’s a dark hole I try not to tumble into very often. While chronic sorrow is definitely real, I don’t want it to be the thing that defines me. I don’t want sadness to be the focus of my daughter’s life, constantly hanging over us like a dark cloud. That’s why I’m on a search for more joy – not just for my own sake, but to improve the quality of life for my entire family.

So, what are some ways I’ve moved away from the sorrow and towards the joy? Here are four things that have worked for me:

1 – Gratitude: When my daughter was a baby, feeling grateful was not easy for me. My sadness was mixed with a lot of anger because it just didn’t seem fair that my daughter and my family had been given such a heavy load. But, gradually, I realized that I had so much to be grateful for. And, the more gratitude I felt, the less angry I was. That made more room for the joy to squeeze in.

2 – Being a little bit selfish: It shouldn’t feel this way, but sometimes taking care of myself feels a like an indulgence. But, self care is not selfish; it’s a necessity. Beyond the basics of eating healthy and getting sleep and some exercise, everyone deserves to do something every day that makes them happy. Whether it’s just five minutes or carving out an hour or more for myself, I watch for opportunities to take the time to do something that replenishes me. That might be taking a long walk while listening to a motivating podcast, reading a good novel or taking two minutes to relax my shoulders and take a few deep breaths.

3 – Getting professional help: Early on, I recognized that my grief was more than I could handle on my own. I felt so overwhelmed, and I knew that I needed professional therapy. At first, I felt embarrassed about needing to see a therapist because I thought it was a sign of weakness. But, seeking help didn’t mean that I was weak; it meant that I was empowering myself to deal with my circumstances rather than letting the situation overpower me. I was taking action rather than passively sinking into my grief.

4 – Appreciating small moments of joy: Even on the darkest days, I try to find tiny joys. It could be a smile from my daughter, a hug from a friend, an inspirational quote, a happy song, an ice cream cone with rainbow sprinkles…I’ve learned that joy is there if I’m willing to search for it.

The special needs parenting journey is not easy. Every day, I try to make mindful choices that infuse more happiness into my life. The more joy I can find for myself, the more patience, energy and positivity I have to share with my family and friends. So, while I can’t completely eliminate the sorrow and anxiety in my life, it’s definitely worth the effort to do everything I can to find more joy.

Leah Trotter

Why We Need Changing Places for Older Children

As I squatted and struggled in yet another strange corner of a restaurant trying to discreetly change my developmentally delayed son’s diaper, I wondered why no one was outraged on my behalf. Then I wondered if anyone could actually see me. I know I am not invisible, but I am forgotten. I am the mom of a child who still requires diapers and I want to know if this is really the best we can do for parents and their children with disabilities? I’m not sure why there isn’t a good bathroom changing option for bigger kids, but I do know I am not the only caregiver who feels strongly about this topic. Bathrooms and changing spaces keep parents from being able to bring their kids to many places. It is one more obstacle parents face in the fight for inclusion for our children. I am generally able to take my son back to my mini van and change him when we are out in public, so public changing spaces haven’t been my biggest struggle. Unfortunately, my van was totaled recently and there is no room to change a big kid in my rental car. I know this change has precipitated my struggle to this boiling point because I now have no options when I am out with my son. My son is medically complex and has a rare genetic and metabolic disorder. Thus, it’s imperative that he stay healthy so that he can stay out of the hospital. This makes the dark hallways, weird corners, and awkward spaces where I’m forced to change him even more painful because they are never the cleanest. Not only is it embarrassing to be guided to the darkest corner of a place to change your child, but it’s also hard work to change a diaper in that environment. It took me 20 full minutes to change my son after finding the spot, doing the deed, returning him to his chair, and then going back to dispose of the diaper and wash my hands. I got several dirty looks and not one offer for help or even an encouraging smile. This is not uncommon and this is one of the reasons we try to avoid places without accessibility to big kid changing spaces. I don’t want to force my son to sit in a wet or dirty diaper because I don’t have a safe place to take care of him, but this has absolutely happened. But, I am not writing this for you to feel sorry for me. In fact, I want you to feel informed and empowered to be an advocate for better public changing spaces. I want you to know better so you can help me do better! I have no idea when or if my son will be toilet trained. I am less concerned about rushing that aspect of his development and more concerned about the state of our society when not one person bats an eye at the mom forced to change her child’s diaper in a dehumanizing way. Does this mean that the people in the restaurant I’m eating beside don’t think my son can understand so it doesn’t matter? Or they just simply don’t care because it doesn’t affect them? Maybe people just don’t know of this struggle because parents and their children with disabilities are forced to live in the shadows. So I am writing this to inform everyone that public changing spaces are a problem. I want you to help the next mom you see this in this situation by showing her that she is not forgotten. It’s that easy to be an advocate for better changing spaces, and being aware is the first step to making change!