Cerebrocostomandibular Syndrome

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Cerebrocostomandibular Syndrome
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    Emily Durrant

    Cerebrocostomandibular Syndrome: To People Who Didn’t Believe in Me

    This may sound odd, but from the bottom of my heart, thank you for not believing in me. I’m about to graduate from college, and some of you who knew me from my very first breath in this world didn’t think I should be able to walk, talk or eat. But here I am, and believe me, I can walk the walk, talk the talk and eat like a pig. I was diagnosed at a young age with a rare disorder called  cerebrocostomandibular syndrome . I was told if I survived the surgeries I faced, puberty would kill me eventually. Emily. Growing up, I did my best to fit in with the crowd. I had little moments not every kid experienced in school, such as a nurse walking with you and telling you that you can’t play kickball in gym class. But I was determined to be like everyone else. Many of us grow up with our parents telling us not to be like everyone else, but I craved it. There were moments when I was crying and screaming at my parents because I wasn’t like everyone else. I eventually grew up and understood I can’t change who I am so I need to be the best version of me that I can be. As I grew up, the not believing in me didn’t stop. It continued. It continued to the point where I understood what you were telling me. When doctors told me I shouldn’t be alive, I had no idea what they were saying; I was just a baby fighting to survive. But when I was 16 sitting in an office with my guidance counselor who was telling me I may or may not do well in college, that’s when a fire lit up inside of me. I was determined to prove you wrong. So here’s the thing: I’m not mad at you for not believing in me. I should feel anger but I don’t. You told me I wouldn’t last in college. Maybe you thought I would drop out because I wouldn’t make friends, or maybe you thought the classes would be too hard. Yes, classes are hard in college, and yes, making friends isn’t easy for me, but I survived just like every other college kid. So when I accept my diploma, I’ll actually be proud of myself, and maybe I’ll feel a little more pride than some of my peers. I’ll remember how I was told I wasn’t supposed to be here, but I was determined to make myself known to the world. Although I’m not sure what I’ll be doing in the next couple months, I know I’m just going to keep climbing the mountain. Follow this journey on Emily’s Journey. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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.

    Julie Leach

    Incorporating Therapy Into a Child's Daily Life

    We learned early on that the best way to help my daughter Abby, who has cerebrocostomandibular syndrome, with her development is to adopt a “therapy lifestyle.” We don’t “check off” her therapy when it’s done each day. That could limit her therapy to just 10 or 15 minutes a day. Instead, we embed therapy into everyday life. Most of the time, she doesn’t even realize she’s working! And once she does and protests, we change it up. Julie and her daughter, Abby. Here are a few examples of how therapy can be incorporated into day-to-day activities: 1. Have your child push any doorbells and elevator buttons, as well as open any doors. Standing on tiptoes can strengthen and stretch the leg muscles and improve the arches of the feet, while opening doors can help with fine motor and arm strength. We will even intentionally put things on a higher shelf so she has to stand on her tiptoes to reach them. 2. Invest in a small exercise trampoline with a handle. This has seriously been a game-changer in our house! With this kind of trampoline, kids can practice high jumping, jumping on one foot, twisting while jumping, and even using Therabands while jumping! It’s a great little therapy tool that is a lot of fun. 3. At the grocery store, have your child call out the names of the fruits and vegetables he or she sees. Discuss the color, shape and size, and compare the sizes of different types of produce. It’s amazing how many opportunities to practice language skills you can find at the grocery store! 4. The bathtub is a great place to work on fine motor and language. Have your child pour water from one cup to another. We play a game where we see how long we can keep a cup of water going… the less Abby spills while she is pouring, the longer the water will last! Shaving cream, spray foam soap and bathtub paint are all great for practicing writing. With those materials, you can also talk about colors, discuss pictures that your child paints, etc. 5. Work on balance skills by walking on curbs (safely, of course!). It’s also fun to hop from one sidewalk block to the next. As Abby got older, we increased the amount of distance we wanted her to jump until she could jump over a sidewalk rectangle. This works well with tiles while you’re waiting at the doctor’s office, too! 6. Allow yourself permission to avoid the therapy check-off list if or when it’s not working for you. I’m sure you already do so much for your child already — just be intentional in the activities you do and look for ways to build in language, fine and gross motor activities. Therapy can be so much more effective when in the context of everyday activities, rather than as a separate component. Plus, that’s one less thing on your already huge “to do” list! What are some other ways you have created a “therapy lifestyle” for your child? The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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.

    Julie Leach

    What I Wish People in My Daughter's IEP Meetings Knew

    I’m the mother of a medically fragile child who is just starting her school career. She’s very bright, curious and eager to learn. But because of her unique medical needs due to cerebrocostomandibular syndrome (CCMS), there need to be some procedures in place to keep her safe and help her do well in school. She has an Individualized Education Program (IEP) for speech, but it’s also coded “Other Health Impaired” because of the medical concerns. In addition to her IEP, we also have an Individualized Health Plan in place with many specific protocols to follow in case of emergency. Her medical concerns are pretty unusual, and the school system often isn’t sure how to handle them. We’re certainly all heading into unchartered territory together. As a teacher, I have been on both sides of the IEP table. I’m well aware of the conversations some therapists, teachers and administrators can have as they roll their eyes regarding that parent who called again. I have attended many “pre-meetings” to discuss everything that will be shared at the IEP — but before the parent is present. I know how many students therapists have on their caseloads and how much paperwork is involved in writing goals and progress reports. But I feel it’s tougher being on the parent’s side of the IEP table. As much as I love my students, my daughter has my heart. I am her advocate; if I don’t speak up for her, who will? Here are a few things I would tell you if I could: 1. I know my daughter better than anyone. When your child has an extremely rare syndrome and there is no specialist for it, you get used to becoming the expert. I may not have a medical degree, but I’m an expert in cerebrocostomandibular syndrome! I have poured over medical journals, researched various symptoms, connected with other CCMS parents, been part of genetic studies and taught every one of my daughter’s doctors about her syndrome. I take notes from one specialist to the next, clarifying conflicting information and relaying suggestions other doctors have given. They look to me as the one who knows her best, so why shouldn’t you? 2. Sometimes you have to throw out the protocols. I know there are many protocols related to how and when a student receives services. But sometimes kids don’t fit into the neat little protocol box. Then it’s time to think outside the box! If you are uncertain about the legal ramifications of not following a protocol, take it to a district supervisor. 3. I really want to work with you! Trust me on this one. I really do want us to all be on the same team. Why do you think I bring cookies to every meeting? I love my little girl and I just want to make sure she’s safe. I’m not trying to be difficult or annoying. I’m a helicopter mom by necessity. When I put her on that school bus, I need to know that she will be safe for the next seven hours until I pick her up. 4. My daughter is worth the fight. Since she was born, I’ve been fighting for her. I fought for aggressive treatment in the NICU, rather than going with the suggested “let nature take its course.” I fought for early intervention therapies when the doctors told us she would never walk, talk, hear or see. I fought for her to try to be weaned off of a ventilator when we were told she would be vent-dependent for life. I fought for her to be placed in a traditional public school setting because that was the least restrictive environment for her. And you know what? She rose to every single occasion and proved I was right to fight for her. So the next time we’re sitting in an IEP meeting together, think about these things. Then remember every single thing I say or do in that meeting is because I love my daughter to the moon and back. And enjoy the cookies! Follow this journey on Life as a Leach. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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. Lead photo source: Thinkstock Images

    Julie Leach

    4 Ways to Help a Friend in the Midst of a Medical Crisis

    We’ve all felt inadequate and even uncomfortable as we try to give support to a friend in need. We may have said some of the dreaded clichés, such as, “God won’t give you more than you can handle!” or “You’re so strong! I wouldn’t be able to do what you do!” You don’t want to sound like you’re minimizing your friend’s pain, but you also can’t truly understand unless you’ve been there. I have been there, many times. My daughter, Abby, was born with an extremely rare syndrome called Cerebrocostomandibular syndrome, which affects her airway and lung development. At age 5, she has had 15 surgeries with at least 30 more to go. We’ve been in and out of the hospital for surgeries and illnesses more times than I can count at this point. In the last five years, we’ve had so many people do amazing things for our family. I wanted to share with you just a few of my favorites. 1. Be intentional with your offers of help. Instead of saying, “Let me know if I can do anything,” just go ahead and give a day and time you’re going to bring a meal over. I don’t believe anyone’s going to turn down a home-cooked meal! Arrange to clean your friend’s house — without judgment! Invite the kids over for a play date. I never quite got the hang of asking for help, but I was so appreciative to the ones who didn’t wait to be asked. 2. Send gas cards and care packages. If your friend is traveling to a hospital, gas bills add up quickly. Practical gifts like gas or restaurant cards are really nice and don’t take up space in a tiny hospital room. Some hospitals also have gift cards for the cafeteria and coffee shops. Care packages are fabulous, too. Include lots of consumable gifts like on-the-go snacks, microwavable meals that can be heated up at the hospital, hand sanitizer, quarters for the snack machine, a bottle of water, a pen or maybe some treats for the person in the hospital — but find out what is allowed first! There’s nothing like sending snacks, only to find out the person can’t have them! 3. Buy hospital parking passes. Most big hospitals require a fee for parking, but a lot of them sell parking coupons at a reduced rate. Purchase some of these parking passes for a friend who is going to be traveling back and forth often. Make sure you find out about expiration dates and vehicle requirements. This is such a nice gesture. Parking, on top of gas, gets expensive when you do it often. 4. Visit. Whether the person is in the hospital or at home, visitors brighten everyone’s day. Call ahead to make sure a visit is OK, and be sure to ask if there are any restrictions. Many hospitals have minimum age requirements for visitors, and we also always asked that all visitors be healthy and have had the flu shot. Don’t be offended if your friend asks you to come a different day. It could be a busy day of tests at the hospital, or maybe the patient just isn’t feeling up to it that day. But if you are able to visit, do it! Bring along a fun game or a little gift. Put meals in individual containers for your friend to heat up. Honestly, you don’t even need to bring anything but your company. Your visit will be just the medicine your friend needs. No matter what you decide to do for your friend, just know that your love and support means the world to her. Even if she can’t express it, even if she never gets around to writing thank you notes, even if she lashes out at you from the stress of the situation — you caring enough to reach out is what is helping her get through this difficult time. Follow this journey on Life as a Leach. The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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 Share Your Story page for more about our submission guidelines.