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    Denise Rehner

    Navigating the New Landscape of Parenting a Child With Disabilities

    I am a caregiver. I didn’t plan it and in fact I had no idea that I would become a caregiver — other than the usual care a mother gives her child. My care goes to a little boy named Brett. Many people believe, as I do, that every living being is in the world for a reason. I believe Brett is here to remind us all that we are all different, and those differences, when truly honored and realized, bring something beautiful and strong, powerful and generous to those around them and in doing that, make the world a better place. Brett’s inner world The number one thing I want to tell the world about Brett is that he is happy. He loves life. He’s a social being and loves people. He is able to participate in family, in community and in life, even if he has no words yet. When people see Brett, they see a young boy, tall for his age, but thin, who sometimes still rides in a stroller. They notice he is unable to sit up on his own and has extremely delayed development with no verbal ability. But we’re working on that. Some people might look at him with pity — in fact, unless I’m making it up, I often see pity in many people’s eyes. But Brett himself would not be interested in their pity. Brett seems to love his life. He has a mother that loves him intensely and unconditionally. His father makes sure he has everything he needs. He is surrounded by love. Everywhere he goes, Brett attracts people to him with his golden curls, big blue eyes, striking good looks and contagious joy. I believe his purpose in this world is to be happy. To love others and to make others aware that his differences are just that — differences. They do not make him somehow ineligible for interaction, ineligible for love, ineligible for inclusion. But providing extraordinary care for him without becoming exhausted, burned out or run down, or, as happens for some, resentful, depressed, hopeless or overwhelmed with grief, turns out to require extraordinary attention to my inner world. Brett is a child like any other child I’m reminded of the piercing lyrics of a song by Cindy Morgan, “Take My Life:” This race is not just for the runners Some of us walk while others barely crawl We make our way through spring and winter Leaning on the strength that strengthens all This song had always moved me in the past, but hearing it again after Brett was born, those words took on a whole new meaning. When I hear Cindy sing, “while others barely crawl,” I sometimes think about Brett’s slow motor progress and wonder if he will ever walk or even crawl. Then I remember that this song’s message is about how we all have different strengths, struggles, levels of awareness and abilities, yet in the end, we are all the same. Easing into this new world Looking back, I think those early months were like a buffer zone for me and for Scott, as we adjusted to a reality that was wildly different from the expectations we had when we worked so hard to conceive him. Wildly different, also, in that not only did Brett look “normal,” he is exceptionally — extraordinarily — beautiful. His eyes are full of soulfulness and wisdom, and the way his face lights up when he interacts with those around him is remarkable — and indicates much more presence than some might assume given his intellectual disability. Something must have told me that I was slowly beginning to allow a radically different understanding of Brett’s situation to come into my awareness because, at 22 months, I at last sought out a second opinion. Because we had been coming at this largely from a neurological perspective, I began with a series of visits to another neurologist. A mom’s inner world “Please don’t praise me for loving my ‘special needs’ child.” That was the title of a blog post I came across and reposted because it resonated with me. The reason it moved me is the hidden message that praise implies that Brett is not as loveable as, or is somehow less than, a typical child. Or that praise implies that providing extraordinary care requires an extraordinary person — and that I am “rising above” some normal level of loving my child with disabilities so naturally. Perhaps the real — and more revealing — message behind that praise is that others fear that if they had a child with disabilities, they aren’t sure they are that extraordinary kind of person who could love him or her as much as I love Brett. What I want my story to convey is that I am not extraordinary. Far from it. I am ordinary. Brett is the one who is extraordinary — and loving him has brought me to this new level of contribution. People tell me that Brett is so lucky to have me. But Brett has taught me that I am the lucky one. I’ve learned I have an intense ability to love him unconditionally. I didn’t know I had that in me! But Brett has brought that love out of me, and I am grateful. Brett’s life in the outer world I began to notice a point at which strangers started observing Brett’s differences. As an infant, it wasn’t obvious to others that he had disabilities. It’s common to see a baby in a stroller or an infant being carried by its mother. But as he got a little older and a little bigger — say 2-and-a-half or 3 years and 24 to 30 pounds — people began to notice that the way he appeared was a bit different. When strangers asked how old Brett was, I found myself feeling obligated to disclose that he has disabilities. Mostly it was to defend my mothering skills before they judged me as to why I was not letting him walk and run around as a typical toddler would. But for those sincerely curious mothers (men rarely ask) who wanted to know more, I’m an open book. Children younger than Brett, seeing him in a stroller with no shoes on, strapped in, would immediately call out, “Baby! Look at the baby!” even though Brett was older than they were. Their parents would often nervously try to distract their children as though they were embarrassed for what their children noticed. While waiting for my takeout order at the bar in the sushi restaurant, a woman asked how old Brett was. Brett was in his stroller as it’s much easier to maneuver in quick errands such as grabbing food to go. At the time, he was turning 4 in a couple of months, and immediately I clarified my response with an explanation of his disabilities. This lovely woman was a local teacher’s aide and said immediately she realized that he had disabilities. That was a turning point in my mind. I’m always scanning stranger’s eyes to see if they recognize his differences to determine how much of an explanation or clarification I needed to launch into. But now, she confirmed, it’s obvious to many strangers from the moment they see Brett. Adjusting to the new normal It’s not that I tried to hide his disabilities for as long as possible. I am immensely proud of Brett for who he is, how hard he works at achieving the simple things that most families take for granted. I remember, when he was still an infant, being concerned because he did not seem to smile. “Was it a sign of something wrong with his social skills?” I thought. But like I mentioned earlier, Brett is truly one of the happiest children I have ever seen. His gift is bringing joy to all those around him. I was the one who needed time to process, adjust, and find my role and rhythm. Brett has always been comfortable with who he is and it is my deepest hope that he will always be happy and content. Brett is now 6 years old, so I’ve had some time to adjust to this new and important role of being not just the mom of a child with disabilities, but Brett’s mom. I’m still trying to navigate this new landscape. The one thing I know for certain is that Brett was meant to be my child and I am honored he choose me to be his mom.

    Letting Go of Comparing Your Child With Developmental Delays to Others

    I’m a third-grade teacher. My students are typically 8, turning 9. This is my 13th year teaching, so I know 8-year-old kiddos pretty well. This fall, a very special girl is turning 8 — my daughter, Natalie. Natalie has GRIN2B related neurodevelopmental disorder, a rare genetic disease that has limited her ability to learn and communicate. I see 8 all day long. I talk to 8 all day long. I hear their 8-year-old stories and watch their 8-year-old selves learn and grow and do amazing things throughout the year. I see their 8 and then I see our 8. It is not the same and I have struggled with that reality. Birthdays in general are hard for me as the parent of a child with a rare disorder, as I think they are for many parents of kids with developmental delays. Another year older, but not another year of developmental milestones reached. In teaching, we want to see a year’s worth of growth or more for all students. I remember sitting down and taking developmental rating scales from two appointments three years apart and trying to calculate her developmental growth in months. What a horrible idea. If she were my student, I would have been disappointed as a teacher because she was nowhere near making a year’s worth of growth. Here’s the thing though… I didn’t fail her. I’m not her teacher. I’m her mom. She has teachers — wonderful teachers! She has a caring aide, amazing support staff, some of the most knowledgeable therapists that have ever walked the planet and classmates that love her. They have her covered at school. They are doing all they can, but there is one thing none of them will ever be able to do. Be her mom. She doesn’t need me as a teacher mom. She needs me to be her mom. Just her mom. Being a teacher has helped me navigate the IEP world. I have an understanding of all the weird acronyms in education. I see firsthand what special education looks like in schools and I know what I want and do not want for my daughter. All of this has helped me become a well-prepared parent, but it also hurts to see neurotypical 8-year-olds all day and compare that to my daughter’s 8. So moving forward I’m just going to focus on being her mom. No growth percentages will be calculated. No comparisons need to be made. When she’s in the mood to work on her goals at home, we will work. Learning is hard for her and if she doesn’t want to do it sometimes, I’m OK with that, because I’m her mom and not her teacher. So to all the teacher moms and teacher dads out there — fight like hell for your kid, but take the teacher hat off. Take some of the pressure away. Don’t think about what your child “should be” doing compared to your students. For now, I will be her mom and enjoy our 8. Happy birthday, sweet girl.

    Liz Marfia-Ash

    How to Communicate With a Nonverbal Child

    Innocent questions from children.“Will she ever talk?”Always the same answer.“We don’t know. Maybe.”“Why is she upset? She has a swing and a trampoline.”“You’d be upset too if you weren’t able to talk and tell people what was bothering you.”“How can she know what talking is?”“She can hear everything we’re saying, but she can’t respond.”Realization sinks in. “Oh.” My heart and mind are weary sometimes, but still, it is what it is.I’ve said this more times than I can count.Most days it’s true.Some days, it feels like I’m on a lifeboat, drifting out to sea, further and further from the people around me. But the realities of life and many responsibilities always pull me back in.There is no drifting.There is no resting.There is only work.And advocacy.And research.And questions. So many questions.So many nuances to explain.Some days it’s too hard to explain the countless emails, phone calls with teachers, school therapists, private therapists, doctors and nurses. It’s hard to explain the endless amounts of research I can never keep up with.I sift through articles about sensory strategies, new therapies to try, toilet training techniques, and strategies for communication. Paperwork on the desk.Paperwork on the kitchen counter.Paperwork shoved in my purse for later. And still, we are lucky.I know we are blessed.Our insurance covers most things.We meet our deductible early.The bills are large, but we manage.No big purchases, no fancy vacations for us.Our motto is: whatever she needs, we find a way to provide it. Yes, there are sacrifices, but they don’t matter.They say, “You’re only as happy as your least happy child.”How do we make her happy?She isn’t able to speak.I don’t know. We only get glimpses of what she likes through much trial and error.Swimming (warm water only).Swinging.Music (not obvious “kid” songs).Her tastes are eclectic: Hamilton, Disney, Michael Jackson, 70’s rock, musicals. Our house is filled with music and swings.We’d fill it to the brim with anything she liked.If we only knew. But sometimes it feels like it’s never enough because all these things don’t replace communication.A tummy ache, a paper cut. She’s hungry, she’s thirsty.Someone was mean at school.No words to tell us. “Have you tried sign language?”“Have you tried PECS?”We’ve tried it or researched it all. The answers always lead us to the same place– a communication device (also known as AAC).That’s the holy grail for us.It’s a device with buttons she can press to tell us what she is feeling, and what she wants or needs.But it’s not that simple.More research is required.Best practices must be followed.It’s time to switch, yet again, to a new speech therapist — one who is an expert with AAC. Even still, it won’t be an overnight thing. “By 18 months, babies have heard 4,380 hours of spoken language and we don’t expect them to be fluent speakers yet. If AAC learners only see symbols modeled for communication twice weekly for 20 to 30 minutes, it will take 84 years for them to have the same exposure to aided language as an 18 month old has to spoken language.” – Jane Korsten, SLP It all seems so exhausting, but what choice do we have? She’s a person.She’s a 5-year-old girl with five years’ worth of thoughts and feelings and opinions in her head, and little way to share them. We see her in bits and pieces.We see her sly smile when she pushes her baby brother, and we admonish her. We see her when she smiles each time Billie Jean comes on. We see her when she’s with her favorite family members and therapists, andshe lights up when they talk to her.I mean they actually talk to her and acknowledge her feelings. We see her when she’s overwhelmed and lost.Too many people.Too many sounds.Too much visual clutter.Too much talking. We see her.Our beautiful girl.Our 5-year-old.Not a 1 or  2-year-old in a 5-year-old’s body.Just a girl with five years’ worth of her own select experiences and thoughts. We see you, sweet girl.We are trying.

    Experiencing Grief as the Parent of a Child With a GRIN2B Mutation

    Recently, the first virtual family meeting for parents of children with a GRIN2B variation was held. GRIN2B is not the name of a disease, disorder, or syndrome. It’s the name of a gene located on the 12th chromosome. There are so few people diagnosed with a genetic variation at this location that we don’t have a syndrome name yet. We just say our children have a “GRIN2B mutation,” and we have an adorable bee as our symbol. I had the date for this meeting on my calendar for months. I planned my day around the meeting. I tested and retested my computer to make sure I would be able to login when it was time. The meeting started and names were starting to pop up that I recognized from our GRIN2B parent support group. We all took a turn to introduce ourselves. It was amazing to hear the voices of all these parents that I had communicated with online. As the introductions rolled on, I turned to my husband and commented on who this person was and what it was that their child had done earlier this week or how they were similar to Natalie. I was surprised at how much I knew about these people and their children that I had never met. Then a voice came across the line and I was immediately overcome with emotion. This was the voice of a parent that lives over 3,700 miles away from me. I sobbed as they made their introduction and told a little bit about their child who is the same age as mine. I already understood everything they were saying – plus, I know the sound of this child’s laughter. Many GRIN2B children sound like Natalie. I know the way they put their hands just so when they are excited, the same way Natalie does. I also know how hard they have worked on walking and how much progress they have made, just the same way we did with Natalie. This child could be my daughter’s twin. It is incredible to think about, since a little over a year ago, I didn’t even know of a single child who was anything like Natalie. All of that changed when I found an article on The Mighty titled, “To the Person Who Just Googled ‘GRIN2B’ for the First Time.” That was how I found my GRIN2B tribe. As I tried to get my life together I thought: Why am I so into this? Why am I having such an over-the-top reaction to “meeting” other families with GRIN2B? I looked over at my husband and he was crying too. He asked me why I was crying, and I said I was happy. I asked him why he was crying, and he said he was sad. I wasn’t sad. Not even a little. My husband said to me, “If it wasn’t for you, we wouldn’t be doing this right now. I wouldn’t have pushed the way you did to find out what was going on with Natalie. I would have just accepted that she was delayed and I never would have found out about GRIN2B.” Why am I so into this? Why was it so important for me to know why Natalie was developmentally delayed? Everyone told us, “It doesn’t matter. Just do therapy.” Don’t get me wrong — therapy was and still is so important. I had to know. It took four years, nine months, and 18 days to find out. Why am I so into this? Why is it that after we received her diagnosis, I have been obsessed with finding out more and connecting as much as possible with others? I’m constantly checking the parent Facebook page and talking to my husband about these children and families like we’ve know them for years and years. I’ve done all the research studies I can get Natalie enrolled in. I’ve tried so hard to learn more about genetics, but I’m still very far away from really understanding it. I’ve suddenly fallen in love with all things bee-related. I even got a tattoo this summer with a bee on it to commemorate Natalie’s one-year anniversary of receiving a diagnosis of a GRIN2B mutation. I don’t even like bees; I’m terrified of them. Yet I have a bee tattoo, bee jewelry, bee shoes, and bee lights. Are there others like me? Why am I so into this? Why is it that when asked if I could meet anyone in the world, I get teary eyed thinking about three families who have a child with a GRIN2B variant? I couldn’t even keep myself together hearing voices come across the computer, I’m not sure how well I would fare in a face to face meeting. Why am I so into this? Then it all made sense to me. This is grief. This is all part of my grieving process. I was stuck for a long time, and still sometimes revisit the thoughts of everything that Natalie will likely never do. I have mourned what I had expected. I have come out on the other side of that dark cloud of anger and depression. I still slip back in, but my family pulls me back. That’s why I’m so into this. This is my path out of the darkness. I spent so much energy being scared when Natalie was young and not hitting any of her developmental milestones. People said, “Don’t worry. Babies all develop at their own rate.” I spent so much energy being sad that Natalie still wasn’t even crawling when other kids her age were walking. People said, “She is just a late bloomer.” I spent so much energy being angry that this was not the plan. People told me, “God has a plan.” I spent so much energy being determined to figure out why our plan was thrown off. People told me, “You might never find out.” Now that we know — what am I going to spend my energy on? I’m honored and proud to be a founding member of The Grin2B Foundation. I have fully immersed myself in this new world of GRIN2B. I cling to every picture, video, and story that is shared about a fellow GRIN2B child, because when I learn about these children, I don’t feel like we are so alone in our journey. I buy every single bee-related item, even though I dislike bees, because my daughter belongs to an elite club whose mascot is a bee. I have to spend this energy somewhere. I’m tired of being scared. I’m tired of being sad. I’m tired of being angry. It’s about time I spend this energy moving forward. We want to hear your story. Become a Mighty contributor here . Getty Images via Rostislav_Sedlacek

    Liz Marfia-Ash

    To the Person Who Just Googled 'GRIN2B' for the First Time

    A year ago was the first time my family celebrated Rare Disease Day, which occurs on the last day of February. We celebrated with a simple Facebook post announcing that our 18-month-old daughter had recently been diagnosed with a rare genetic mutation. At that point, I wasn’t even putting a name to what she had simply because there was no official name. In the United States, a rare disease or disorder is one that affects fewer than 200,000 Americans. When our daughter was diagnosed, we were told she was one of 10 others with her mutation. All we were given were a string of letters and numbers that tell us the name of the gene that spontaneously mutated. There was no syndrome name, no website to look up research, no foundation to donate money to, no awareness month, no guidance, no support. We barely told anyone the name of her gene mutation because we didn’t want people to Google it and find next-to-no information. How could we tell people what she had when we barely understood it? But that was then and this is now. A year later, we have connected with about 25 families worldwide through Facebook. I’m sure there are families that aren’t on Facebook and, with the rising prevalence of genetic testing, more and more children are being diagnosed each day. Those are the families I’m trying to find, so I’m finally going to put a name to my daughter’s rare disorder: GRIN2B. Five letters and one number. GRIN2B is the gene that mutated that has caused my daughter’s developmental delays. Very little is known about it and we still don’t fully know what it means for her future. “You either get bitter or you get better. It’s that simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you.” — Josh Shipp I have been bitter. Not every day, thankfully. But on and off since the diagnosis. It’s incredibly isolating to be told your child’s diagnosis has no name and next-to-no information about it. I am the type of person who finds comfort in knowledge and believes there is strength in numbers. I cannot just sit and wait for information about my daughter’s diagnosis to be presented to me. Kind words are nice. Hope and faith and prayers are also very much appreciated. But what our family needs most of all is action. So here is the part where I’m trying to get better. Right now, when you Google GRIN2B, you will find basic information about the gene and a handful of medical articles which are very hard to understand for the average parent. And here’s the thing: Medical articles deal in fact — what a kid can and cannot do. But they don’t say anything about the child’s smile or the sound of their laughter or the feel of their hug. They don’t describe the fierce love we parents and siblings have, or the way having a child with special needs opens your eyes to so much in the world. Because I remember all too well the feeling of despair and discouragement from initially Googling GRIN2B and coming up short, I’ve decided to develop a website to support all our families. This site will show what little facts we do know, but, more importantly, the faces of GRIN2B: the kids who are so much more than developmental delays and neurological differences. The website will be a chance for us to support each other, share resources, educate each other about ongoing research studies and tell our children’s stories. As our numbers grow, I dream of coming up with additional ways to promote awareness and build our community. There is sometimes a stigma against labeling our children with their diagnoses, but a label doesn’t have to be bad unless we make it bad. When I say my daughter has GRIN2B, it’s not with the intention of wanting others to pity her or impose limitations. The only way I see to promote awareness and to help our family feel less isolated is to label her. Labeling and limiting do not have to be synonymous. My daughter has GRIN2B, but she is not just GRIN2B. She is so much more. To my fellow GRIN2B families and anyone looking to understand what this disorder means and how it affects our sweet girl, the website is in the works. To the newly diagnosed families, we are looking for you! Please reach out to us and help build our community. You are not alone! Liz’s son and daughter The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.