Miriam Gwynne

@miriam-gwynne | contributor
Miriam is a 39-year-old mother of twins living in Scotland. She has a degree in teaching, is a full time carer and has a strong faith, yet nothing has prepared her for parenting two children with special needs. Her children are her life, her inspiration and her reason for living; one has yet to say a word. She started blogging in 2013 and has never looked back.
Miriam Gwynne

Why I Told My Autistic Daughter There Is No Santa

I love the magic of Christmas. I love the way it changes people and they think about others much more. Charities often make more money in December than the rest of the year, and children sing carols and cheerful songs at school. Although it is very commercial, it can be a real time for families to come together and children have an excitement and anticipation as they look forward to a special day. So why would I ruin all that by telling my sweet, blue eyed daughter there is no such person as Santa? First, I am not advocating this is right for every child. My daughter has autism, so I chose to explain there is no Santa for the following reasons: 1. Her literal thinking was causing her distress about Santa. Books, TV programs and all her friends at school talked about Santa coming down the chimney. We don’t have a chimney, and no made up story of magic keys or flying through windows could change the fact that even songs talks about Santa being stuck up the chimney! She took Santa’s grotto as literal, too. She became distressed and confused that Santa could be in the middle of the shopping mall, at her school party and in the North Pole making presents all at the same time. Why did some Santa’s wear glasses and others didn’t? Why would some be tall and thin while others were short and tubby? There is no enjoyment in the make believe of a story when your child sees everything in black and white and will not “play along” just for the sake of it. 2. Her anxiety over all things Santa was interfering with her sleeping. The thought that a stranger would enter her house while she was asleep utterly horrified her. Even though the whole story of him leaving gifts for her should have eased that anxiety, she was worrying over how Santa would carry everything, wether his reindeer would get too tired or even if she would be forgotten — cheers for that one Peppa Pig! The very mention of Santa was not exciting my child or making her suddenly want to be on the “nice list,” it was causing her to stay awake at night worrying and making her jump every time the door bell rang. I could not continue to see her so nervous and anxious over something that was meant to be a joyous and wonderful occasion. 3. The social expectations around Santa were too much for her. OK, so I know she never had to go and see Santa in his grotto anywhere, but when he arrived at her school fair or party, she found the social aspect very upsetting. Having spent years trying to get her to understand basic social rules such as: we don’t talk to strangers and we certainly never sit on other people’s knees. All of a sudden she watched in horror as every other child she knew broke all of these social rules just because the “stranger” was dressed in a red suit. Her autism makes breaking any sort of rule horrifying and distressing, so Santa became linked with people doing strange and confusing things indeed. 4. Her defensiveness and love for her brother was more important than any belief in Santa. This was the crux for me, and the reason I found myself sitting with my daughter on her bed while she cried begging me to tell her Santa was not real. You see, my daughter has a brother who has complex needs. He cannot speak and has a long list of diagnoses. Part of that means he sometimes has challenging behaviors for medical and developmental reasons. Her brother had just had a difficult weekend. Regardless, she still loves him fiercely. So when someone heard about her brother’s behavior, they told her he would be on Santa’s “naughty list” and would not get anything for Christmas. She hated Santa more than she has ever hated anyone ever before. So I had to tell her. Telling my young daughter there is no such person as Santa has been the most magical thing I could have done for her. Everything now makes sense to her again. She can now reason in her mind how Santa can be in the shopping center, the local school and somehow in the North Pole at the same time. She realized the chimney stuff is all a story, and there is no need to fear a stranger coming in her house while she is asleep. She understands why children suddenly want to sit on someone’s knee and tell them what they want for Christmas, because the man in red is actually not a stranger to them at all. But most important of all, she knows without a doubt her brother will have gifts this year regardless of how challenging and difficult his behavior can be. I actually wish I had told her there is no such person as Santa earlier. Now that she knows Santa is all made up, she is happier and more excited about Christmas than she has ever been before. She knows she is getting presents; she knows who buys them and she knows how we get them. For some children with autism, the magic of Christmas might be in finding out Santa is not real at all. We want to hear your story. Become a Mighty contributor here .

Miriam Gwynne

The 'Scanxiety' I Live With as a Parent to a Child With NF1

He was 4 years, 3 weeks and 5 days old when I left the hospital with a piece of paper with the words “neurofibromatosis type 1” scribbled on it from a doctor I had only just met. The more I Googled, the more upset I got. Would you not be anxious if your baby was diagnosed with an incurable progressive genetic condition? Back then my biggest worry was seizures. The cafe-au-lait marks on his little body had meant nothing at all until that day, but now I read their presence was a key marker for diagnosis. He also had developmental delay, a large head and freckles under his arms, which meant the doctor was right, and as I read on about complications and tests my mind began to panic. The condition can cause benign tumors to grow anywhere on the nerves of the body, causing a large variety of difficulties including scoliosis, vision impairment, bone deformities, epilepsy, learning difficulties and facial deformity. As the tumors can only be seen properly by MRI, my first thought was, “Should my little brown-haired boy have to have anesthetic to have a brain and body scan?” This was my first taste of the form of anxiety  common with parents whose children have NF1: “scanxiety,” anxiety associated with having scans and waiting for results. You won’t find that word in a dictionary, but parents of children with NF1 understand it and struggle with it so much. You may never have heard of it, but we live with it none the less. Before our child ever has their first scan, we still experience it. The what-ifs of thinking should he/she have an MRI and if so how do we convince doctors to give them one? In some areas it is standard procedure to scan a child soon after diagnosis to have a base line to work from, but for so many others this expensive test is only given when there is a clinical need. Parental anxiety is not always recognized as a clinical need so many families find themselves fighting for a scan to find out if their child has any internal tumors and if so, where. My son was 7 years, 6 months, 1 week and 2 days old when he finally had his first MRI. From the moment I received the appointment I was anxious. It was going to be the first of many times he would require anesthetic. How would he cope? How would I arrange care for his sibling? Would be need to stay overnight? What might they find? When will we get the results? Scanxiety is scary. My whole life was suddenly out of control, and everything rested on the results of this scan. Two weeks and five days later, I had a phone call from the doctor. Could we come to the hospital the following day as a matter of urgency to discuss the results? Scanxiety hit again with a vengeance. They had found something. They discovered a number of things from that first scan. My son had a serious eye condition unrelated to his NF1 which meant he had no sight in one eye. On the other eye he had something called an optic glioma, which so many NF parents dread: a tumor on his optic nerve. A group of oncologists discussed my child’s case and decided, for now, no treatment was needed. We were sent home. Scanxiety never left me though. In six months’ time we would be back for another scan. My mind could not ignore that. He had a scan, they found a tumor. Next time there could be more. What should have been a six-month wait until the next one turned into an agonizing 10 months before we finally had our next scan on March 3 of this year. The scanxiety of waiting for that second scan was awful. The day of the scan was awful. Waiting on the results is awful. When your child has NF1, scanxiety never leaves you. This time the results showed the original tumor was stable, but my son also has brain lesions, one of which is large, and these are a direct result of his NF1 too. We live with the constant worry he may one day need chemotherapy. We live with the worry he could go blind due to his optic glioma since he has no sight in his other eye at all. We live with the worry they may one day find a tumor that keeps growing. I live with anxiety as a mum to a child with NF1. That anxiety is deeply connected to the fact my son needs ongoing scans for the rest of his life. There is no cure for NF1, and there is no cure for the scanxiety it brings either. We want to hear your story. Become a Mighty contributor here .

Miriam Gwynne

Autism: How Son Uses Google Street View Maps to Communicate

If there is one thing my son Isaac has taught me in the last eight years, it is this: Communication is much more than words. Isaac has autism. He is nonverbal and has global delay, significant learning difficulties and NF1. For a few years now, he has taught himself to communicate via Google Street View maps, and he excels at this. It is a different way of communicating, but it works better for him than speech or any traditional communication app he’s used. Miriam’s son using Google Street View maps Wherever I take Isaac, whether it is somewhere he is familiar with, or hundreds of miles away to a place he has never been before, he has a special talent of retracing the exact route once home using just Google Street View maps and his incredible memory. In the summer of 2014, when he was just 6 years old, we went on holiday to a cottage 120 miles from home. Yet a week later, he retraced the exact route we traveled, including stopping at the very same service station we took a comfort break at! I was amazed at this incredible talent. He attends a school for children with complex needs that is 14 miles from home, yet he takes himself there by memory via Google Street View map every afternoon once home. I wondered if this ability came from him making the same journey daily or if he had the location stored. But one day I watched him, and what I witnessed gave me insight into this part of his world. Watching him using Google Street View map gave me peace of mind as he showed me step by step the route his taxi goes and even where the car parks to get him out. In fact, he even took me to the door of the building he goes into, all without speaking a word. He uses Google Street View map for his every communication need now. If he is hungry, he uses it to show travel from his home address to a nearby restaurant and brings his iPad to show me. If he wants to go out, he uses it to show me where he wants to go, from the church he goes to every week, to the train station, and the local park. He uses it to show me the way to his gran’s house and to shopping centers to tell me he wants to go and watch lifts. He has discovered he can enter a local hotel using street map, and this has opened up new, unique ways for him to communicate, too. For example, he goes into rooms in the hotel and finds an ensuite to communicate he wants a bath at night. When ready for bed, he moves around the rooms until he finds a bed and points at it. He finds my car in the driveway to ask to go in the car. He finds a clothes shop to get him dressed. When he was highly distressed one day and I could not help him calm, I put Google Street View map on, and he moved around to show me there was a door open somewhere he could see, and that was what was causing his upset. I was in awe of his ability to find such an ingenious way to communicate. Two weeks ago, he shocked me once again. He was more lethargic than usual and quiet (he is nonverbal but does make noise). He came and sat beside me and used his skills on Google Street View map to take himself to the doctor’s! For the first time ever, he was able to tell me he was feeling unwell. This was incredible for us! I cried. It was nothing serious, thankfully, but he was able to say he communicated he was not feeling good to a doctor. Isaac has found a way to connect with others that is as unique and special as he is. Follow this journey on Faithmummy. We want to hear your story. Become a Mighty contributor here .

Hannah Cook

Irlen Syndrome and Wearing Tinted Lenses to Improve Perception

“Why are you wearing sunglasses?” I’ve gotten this question often during the past 20 months. With each answer I give, people say they’re amazed at how I managed for 19 years. I wear my “sunglasses” from the moment my eyes open in the morning till they close at night. I have Irlen syndrome, and my brain processes visual information incorrectly. It’s not an optical condition. I wear grey tinted glasses that help my brain process information and make my life a lot easier. Without my glasses, I see moving patterns across everything. Up until 20 months ago, I had never seen the sky as blue; in fact I tried to avoid looking at the sky as it was awful for me. I struggle to read. I’ve never read a full book. When I read, the page sparkles, rivers form within the text and it becomes wavy. I often listened to what others said about books rather than reading them myself. I could never read the board in school; I would copy off the person next to me. It worked, as I am now at university studying for my degree. I have poor depth perception; I walk into things as I do not realize just how close they are. I always fall up and down stairs, because I see them as smooth slopes, making it difficult to judge distance. I deal with debilitating migraines in certain lighting. I lose my speech, vision, and all strength in my limbs before vomiting. I am very light sensitive; I always have headaches, especially under fluorescent lights. For 19 years, I had no idea none of this was “normal.” I thought everyone saw patterns across everything, that text moved and they got headaches. It took hearing someone else talking about how their child would see everything in triplicate for me to research Irlen syndrome. Then I realized I have it, too. My tinted lenses massively reduce all the struggles I used to have. They’ve not fully disappeared, but they are a lot more manageable. I rarely experience patterns across things, I have only had one migraine in the last 20 months, and I find it easier to read, although I have yet to read a book. A pair of tinted glasses has made an amazing difference to me. The next person you see wearing tinted lenses may also have Irlen syndrome. They allow them to experience the world in a less stressful and stimulating way. If you really must ask someone about their glasses, instead of saying “Why are you wearing sunglasses?” ask them why they wear tinted lenses. Many people with Irlen syndrome will be happy to explain how their condition affects them. Take a few minutes to watch my video and see how well you could manage the way I did for 19 years. Could you? We want to hear your story. Become a Mighty contributor here .

Miriam Gwynne

Autism: Why I’m Proud My Child Won’t Be in This Year’s Christmas Play

Maybe I am getting old, but it does seem like talk of Christmas starts earlier every year. We are only just over Halloween, and already the shops have festive music, selection boxes and wrapping paper in prominent places! But as a trained teacher, there is one place I totally understand preparing early for the holidays, and that is schools. There is a presumption that schools and churches will put on an annual play or concert of some sort, and the organization involved in these is tremendous. It can take months of preparation to teach children songs, practice words and prepare costumes. It is a highlight of the year for many parents and children. This year, my daughter, who just turned 8, has asked not to be in the Christmas play. At first I was disappointed, as Christmas is one of my favourite times of year, and both my church and her school put on wonderful shows. But when she told me why she didn’t want to be included, I actually cried. “I don’t enjoy it at all,” she told me. It is my duty as a parent to listen to my children and support them. She has a right to choose. My daughter has selective mutism, anxiety and autism. Being on a stage in front of others, remembering stage directions and song words, and wearing itchy costumes is something she finds stressful. She finds the change of routine difficult and the noise frightening. The thought that everyone is looking at her makes her feel physically sick. I realized I wanted her to be part of it for all the wrong reasons. I wanted it for me, not for her. I didn’t want her feeling excluded or feeling like she was missing out. But in actual fact, I was putting her in a situation that made her uncomfortable and stressed. This year, I will watch the church play and her school play. No doubt I will still cry at “Away in a Manger” and beam with pride at the children in the plays. Instead of watching my little girl perform, I will have the beauty of holding her hand as she sits next to me and cheers for her friends. She will sing the songs happily, and for the first time, I will manage to hear every word as her beautiful voice is right next to my ears. We will laugh together at the fun parts and share the experience in a way she finds relaxing and enjoyable. It will be magical, but in a different way than I imagined. It took courage for her to be able to tell me something she knew I would find difficult to hear. She knows how much I love watching her do things, and she knows how proud I am of her. This year she knows I am extra proud at the fact she felt she could tell me she doesn’t enjoy being part of the Christmas play. I will never forget her smile and the sparkle in her eyes the night I told her how proud I am of her for not being in the Christmas play this year. It is OK to be different. It is OK to say no sometimes, too. Follow this journey on Faithmummy. We want to hear your story. Become a Mighty contributor here .

Miriam Gwynne

Taking Antidepressants as a Special Needs Parent

Thirteen months ago, I reluctantly found myself at the doctor’s office, looking around and wondering why I was even there. There was no antibiotic or cream they could give me, and no X-ray would show the cause of my pain. Yet there I was. They called my name, and a few minutes later I left with my prescription: antidepressants. They made me feel awful. I was so sick, could not sleep and felt distant from everything going on around me, which is not at all good when I have two children with significant extra needs. Something inside me told me I had to continue taking them, so I forced myself to keep going. Finally after a few weeks the sickness eased and I felt more connected. Then, one of my children faced major medical challenges. It was a struggle, but with the help of the tablets and support from friends and family, we worked our way through it a day at a time. I am honest enough to admit that without the antidepressants, I am not sure I could have faced hearing he has a tumor on his optic nerve. We had issues with challenging behavior. On the days he trashed the house and was aggressive, those tiny tablets helped steady me so I could better support him. We worked through that a bit at a time. Then my daughter was diagnosed with an eating disorder, and my world was turned upside-down again. My heart broke, but my mental health thankfully remained fairly steady due to the meds I was taking. I needed that support while my heart broke. Then for a while things settled. Summer ended and the children returned to school. My daughter was slowly eating small amounts, and we had professional support to help us with my son’s medical challenges and behavior. Times were happier, and some nights we even managed sleep. So I figured I didn’t need those tablets anymore. Without talking to my doctor, I made the mistake of slowly forgetting to take them. Sometimes it was just once in a while I would forget, and then it became a habit. I made the mistake of thinking I could take them as and when required. I thought if things were good, I would be fine. If I had a tough day, I could take one and everything would be OK. I was using them like painkillers to take for an ache now and again instead of taking them daily. It was the biggest mistake ever! I became worse than ever before. It was ugly. It was scary. It was upsetting for everyone. I have now realized when things are stable, I still need those tablets. I need them when the forms pile up, the schools phone, when the hospital appointments take over life and when the children struggle. I need them when we aren’t stressed and school is good. I need them when the therapies are working and the children are making progress. My tablets help me cope when things are good and when things are not so good. I may not be able to stop them any time soon, but I will never again make the mistake of using them “as and when required” — for my children’s sake and for mine. I am a special needs mom and I struggle. If antidepressants help, then I will take them. It might not be how I thought it would be, but that is OK. I made a mistake, but I won’t be making it again. Editor’s note: This is based on one person’s experiences and should not be taken as medical advice. Consult a doctor or medical professional for any questions or concerns you have. Image via Thinkstock. Follow this journey on Faithmummy. We want to hear your story. Become a Mighty contributor here .

Miriam Gwynne

Autism and Empathy: What My Daughter Taught Me

There is a widely held belief that those on the autistic spectrum lack empathy. It is often referred to by technical names such as “lack of theory of mind” or even “mind blindness” — both meaning a person with autism appears to lack the ability to understand the emotions, thoughts and actions of others. In other words they find it very difficult to put themselves in another person’s shoes. Some examples of this could be laughing at someone who is clearly upset, saying things that could appear as socially inappropriate, or misinterpreting jokes. A few nights ago though my autistic daughter said something to me about empathy that has taught me so much. We were reading a book together before bed. It was one of her reading books from school and from a well-used reading scheme. At the end of the story there are some basic comprehension questions, and this night I decided to ask her them. Part of the story involved some children hiding under a staircase in the dark as a villain came searching for them. The children had to stay quiet to avoid being caught. The question read, “How do you think the children felt when they were hiding from the villain?” As an adult I thought this would be pretty obvious. But my 7-year-old daughter’s answer was nothing like I expected. She took a moment to think. Then she looked up and said quite simply: “How am I supposed to know that, Mum? I can’t ask them!” What to many would be a fairly typical response from a child with autism actually made me think. Much of what we see as empathy is actually assumption. The Cambridge dictionary defines empathy as “the ability to share someone else’s feelings or experiences by imagining what it would be like to be in that person’s situation.” We have to imagine what another person might be feeling. We base our opinions on our own experiences and feelings and assume the other person could be feeling the same. We are guessing! My daughter struggles with social imagination. But that does not mean she doesn’t care. It does not mean she has no sympathy or feelings towards others. She just doesn’t want to assume, so she has found the perfect way to overcome that: ask them how they are feeling. How often in life do we assume someone is sad or lonely just because they are sitting by themselves? How many times have we mistaken a smile for happiness? We are all unique complex human beings with complicated emotions and feelings. We deal with life events in very different ways. We can say we empathize with someone based on the fact we imagine they feel how we would in the same position. But in fact they could feel completely differently. While it may be socially inappropriate to ask someone at a funeral if they are sad, there are times when asking others how they feel is much better than assuming. Asking enables them to express themselves and connects us far better than presumption does. I thought I was pretty good at empathy. I would have said those children were frightened or worried, but if I asked them they may have actually been excited, cramped or even thirsty. As my daughter said, how are we supposed to truly know if we don’t ask? This week I have found myself asking others simple questions rather than presuming I know how they could be feeling: How are you doing? How are you feeling? Are you OK? Many of the answers are nothing like I would have imagined. My daughter may struggle with empathy in some ways, but she has taught me so much about it in ways I would never imagine. Empathy is wonderful, but sometimes asking how someone truly feels is even better. We want to hear your story. Become a Mighty contributor here .

Miriam Gwynne

My Autistic Child Acts Differently at Home Than at School

My son is going through a difficult time. This morning my husband carried him to his taxi, kicking and screaming. He was stressed, and I was anxious and worried. I haven’t called the school and asked if he is OK because I know what they will say: “He is not like that in school.” Reports from school don’t marry with the child at home at all. In school he conforms, is settled and appears happy. At home he can be violent, unpredictable and highly distressed. The great divide between home and school is a challenge. When my autistic child behaves differently in school, it makes me feel like I am to blame for his meltdowns at home. When the common denominator for the challenging behavior and meltdowns is home, it is all too easy for professionals and schools to jump to the conclusion that “bad parenting” is at work. We are accused of lack of discipline, lack of stability, lack of structure, feeding our children the wrong food and even not loving them enough. But just because a child has the ability to “hold it together” in a controlled environment all day and releases the lid on their frustrations, stresses and anxieties at home does not mean home life is awful. In fact the opposite is true. If a child did not feel secure, loved and safe at home, he would likely continue to “hold it together” for fear of releasing his true feelings. Instead of blaming parents, schools and professionals should be more understanding of the difference between home and school and more willing to listen when a child is behaving differently outside the school gates. When my autistic child is different in school it makes accessing support challenging. So many parents know their child needs support but continually get denied services due to presentation within a school setting. It is frustrating and damaging for so many children who put on a front within the classroom but who inside are screaming out for help. The system is loaded too much to the side of education. A referral put in from a school may be readily accepted, yet a parent’s request for the same service is often refused. There is still the assumption that if a child truly had challenges, these would manifest in all settings in the same way. So parents and children get left with little support, and hundreds of children fall through the system because they are “good” in school. Perhaps if schools were more aware of stresses within the classroom environment — like noise, lights and the stress of conforming all day — for children with sensory sensitivities, they may be more willing to support referrals. When my autistic child is different in school, it appears I am lying. I have been at the meeting when all eyes are on me, and I know they think I am lying or at best exaggerating. I should never have to do it, but I have resorted to videos and photographs of my child at times to prove what I say actually happened. When I mention strategies we have out in place to help support my child at home and how these are not working some days, people once again assume I am lying. It makes parents feel alone, belittled and unworthy. We already feel like we are failing our child, and those feeling are just made worse when schools give more and more examples of wonderful behavior at school in answer to every incident at home. He showed aggression at home but shared his pencils with another child in school the same afternoon. He had a meltdown over homework yet got full marks in his spelling test the same day. It can be the same child. The sooner professionals and schools understand this, the better for everyone. Have they never been professional and polite to someone in their job only to go home and let off steam by moaning at their husband or shouting at a driver who cuts them off? Our children are complex and confused, and yet they soon learn where they can “explode” and where they can’t. Sometimes their triggers are only home-related, and this must be accepted. Just because you have never seen the child react like that in the environment you see them in, does not mean the parent is lying. I know what it is like to see my child happy, flappy and full of delight. I also know how hard it is for him and myself to see him so distressed he cannot control what he is doing. Put me in different environments, like an interview, a prison, a party or a vacation, and you will see me change to suit my environment. My child on the autism spectrum is no different. I need people to see this and understand. Image via Thinkstock.

Mia Carella

Anxiety of a Special Needs Parent on the First Day of Kindergarten

So many parents are rejoicing and celebrating this time of year. After two months of summer vacation, the beloved yellow school busses are returning to bring children back to school and bring parents the daytime respite they so desperately need. The time has come to settle back into the school day routine. But my heart aches. The pain is subtle and underlying, and I cannot shake it. I feel scared. I feel helpless. The past five years have been consumed by my job as a special needs parent. The planning, the research, the doctors appointments, the early intervention. Everything I have done and worked for was and is to protect my daughter and to help her grow in every way. Now I feel like so much of the control I have had is being taken away as my daughter starts kindergarten. My stomach is in knots as I think about it. The panic is beginning to envelope me more and more as the hours tick by. Did I do enough to prepare her for this? Did I advocate hard enough in all those pre-kindergarten IEP meetings? Did I agree to the best possible placement for her? What if she struggles? What if she is not challenged enough? I don’t know. And now there is no time left to do anything more. Stop. Put your pencils down. This is really happening. Like now. I believe my daughter is ready for this big step. She is excited to take on this new challenge of kindergarten, and I am excited to watch the successes I know she will have. My biggest fear is that others will underestimate her. Her speech and language delays, coupled with her shyness and anxieties, cause some people to get the wrong impression of her. When she doesn’t respond immediately to prompts or questions, it is not usually because she doesn’t understand. There is often something else in the way. As her mom, I am well aware of this. I know the intelligence and awareness behind those beautiful brown eyes. I long for my daughter to be able to one day articulate all those thoughts I know are running around inside her mind. For now, though, I am afraid others may not understand all this and may lower expectations for her. This would be a huge injustice for my little girl. I wish I could always be there with her to translate when others don’t understand. I wish I could always be there to help her speak up when she needs something. I wish I could always be there to make sure others are seeing her like I do. But I know at this point I need to take a step back. I need to take a deep breath and tell myself I did the best I could up to this point. I need to let school start and let my daughter shine like the star she truly is. I must take the advice of my daughter’s favorite song and “let it go” – let her go (but just a little bit). I must remind myself she will do great (she really will). And perhaps most importantly at this time, I must learn to start to trust others to look for the best in my little girl as I do. This is by far the most difficult for me, but I know as others truly get to know her, they will see the special girl I do.

Miriam Gwynne

Changing the Portrayal of Neurofibromatosis in the Media

I am part of a community of rare families. Everyone of us has a loved one with the genetic condition neurofibromatosis type 1 (NF). It is a condition that affects only 1 in every 2,500 births — so when any mention of it arises in the media, we want to share like crazy to bring awareness. The problem is the way the condition is portrayed by the media is often incorrect, frightening and very misleading. We feel sharing would actually damage our precious community more than it would support us. What a sad situation to be in. Here are three things I would like the media to remember when talking about neurofibromatosis: Miriam’s son. 1. It is not the “Elephant Man” condition, as often quoted in the media. The “Elephant Man” (Joseph Merrick, an Englishman with severe deformities who died in April 1890) was originally thought for years to have had NF1, but this has been disproven. Now it is believed he had Proteus syndrome. Even if he did have neurofibromatosis, referring to any genetic condition in this way is not beneficial. Although neurofibromatosis does cause facial and body deformities in some people, this is not the case for everyone. NF causes tumors to grow on nerves throughout the body, but for thousands of people affected by NF, they have no outward signs of the condition other than some minor birth makes on their skin (café au lait marks). Would you know that these beautiful children all had neurofibromatosis? I thought not! 2. Neurofibromatosis is not cancer. The very mention of the word “tumor” and the media seems to assume cancer. What can be confusing is some people with neurofibromatosis type 1 do need to have chemotherapy, like little Tayen here who despite having chemotherapy, sadly lost the sight in both of her eyes due to tumors on her optic nerves. Tayen. There is an increased risk of people with NF developing cancer, but the condition itself produces benign tumors, which although painful, disfiguring and debilitating, are not cancerous. Only a small percentage of NF tumors require treatment, and this is only if they will cause damage such as blindness (if on the optic nerve and growing) or paralysis (growing on the spinal cord for example). Some require treatment for cosmetic reasons too of course, but these are mostly carried out by operations rather than chemotherapy. It is painful, disfiguring and upsetting, but it is not cancer. The downside of this is it cannot be cured, making treatment difficult, as the tumors will continue to grow throughout life. 3. People with neurofibromatosis are not ugly! There has been a recent upsurge in the media about severe cases of neurofibromatosis in India where the gentlemen shown have huge facial tumors. The article mentions phrases like “terrified people will stare and make cruel remarks,” and “shunned from school because of his unusual appearance,” and a photograph showing his disfigurement with the words “boy with tumor causes his face to droop.” It has to be stressed this is a very unusual case, but there was little mention of that in the report. How would you feel if your child read a similar article regarding a condition they had? It is terrifying for families of newly diagnosed children to see these articles and rightly or wrongly leaves them with the impression their precious child will grow up to be highly disfigured like the article describes. Neurofibromatosis does not make anyone ugly, undateable, unemployable, or inferior. I cannot stress this enough. When a family faced with a new and upsetting diagnosis reads such articles, what are they thinking? What must a mother’s heart feel like to have her beautiful baby shunned by strangers just because of some misinformation they have come across in the media? My son is not the “Elephant Man,” nor does he have cancer and he is certainly not ugly. He has the genetic condition NF1 which means he has challenges with his vision, his learning and he is part of the one in four people with NF1 who also has autism spectrum disorder. I want to raise more awareness about his rare condition and I know many other families do too. We need information based on facts, so people can learn to better accept us. We need headlines that reflect real life, so we can attain greater awareness. We need photographs and wording chosen carefully, so as not to perpetuate fear. Right now my son cannot read, but I never want him to be scared to hear or read about his condition. I don’t ever want to see another family in tears because of another poorly written article on NF. I don’t want any more teenagers with NF ashamed of their body. I want my son to hear stories of people succeeding, people overcoming against the odds and stories of hope, but these are rarely told. This is why the portrayal of neurofibromatosis in the media needs to change. Follow this journey on Faithmummy