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A hidden disability is an umbrella term to capture a spectrum of disabilities that mainly affect the brain. Let me tell you about how my hidden disability has not only changed how I live forever, but also has shaped me into the person I am today.
At age 16, while on holiday in Florida with my family, it took approximately seven minutes for my life to change forever: I had my first ever epileptic fit. I had never suffered any form of disorder relating to epilepsy previously and at the point I have developed the condition I will be fighting to keep it under control for the rest of my life. My first ever seizure was an interesting experience to say the least… I remember two things from the experience: arguing with the paramedics that “who is the Queen is a stupid question” and asking my Mum what theme park we were visiting that day o, yes, in short the condition does have its lighter moments. However, in retrospect this was one of the scariest moments of mine and my family’s lives. Picture the scene: you are enjoying a holiday and 24 hours later you are watching your son/baby brother being diagnosed with a condition he never knew he had and you didn’t know how to deal with. Like most disabilities, both hidden and visible, epilepsy has affected me physically. It has also taken its toll on me mentally. I cannot drink due to my medication and for many years this made me feel excluded. I thought it made my 18th birthday feel insignificant and on more than one occasion I would not be invited on nights out because I am “boring” because I don’t drink. I have also never been able to learn to drive up until this year and that was without a doubt a knock to my confidence. However, if I could go back and tell my younger self and any kids here anything, it is that you don’t need to have a drink to have fun; you just have to surround yourself with the right people. Surrounding myself with the right people means my day to day life is now incredibly boring and my condition is well under control. I have wonderful friends, family and a consultant who has struck gold with my medication… big up Dr. Steiger. I know I will never be cured and it does dawn on me from time to time that I am fighting a somewhat invisible enemy, but I like to think I embrace that. Epilepsy is a condition that can strip you of your dignity, therefore embracing what comes at you is really your only option. I have been found in some states that could be described as questionable following seizures… conditions that I am very much sure I am not allowed to talk about in this article. However, in a strange way, for me at least, the strange injuries and downright weird incidents have helped me build my character; they give me stories to tell and jokes for people to laugh at. I want people to be able to talk about my condition and it gives me great pride to be writing this article because it gives epilepsy a voice. I want people to embrace having discussions about disabilities both hidden and visible. Danny
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‘Can you please repeat what you want to say again?’--- I have to hear this question usually every day. My words spread out when I speak fast- mainly because I am excited or nervous. At that time, no one understands my words- it’s obvious. So I don’t hold any grudges towards people if they say they didn’t understand my words or I have to explain to them again slowly. But I feel guilty or depressed inside because I can’t always make people understand my words nor I can speak slowly. There are many causes of speech impediments or disorders. I guess my one is due to respiratory weakness as I have a dust allergy for which I catch coughs and colds very often; so I can’t speak long sentences sometimes as I can’t keep my breath for long. When I was young, I couldn’t talk clearly because of my disorganized and misplaced teeth. Some of my cousins used to ask why I am like this. I was really sad and used to come to my mom crying. She understood my feelings and tried to talk to my dad about fixing my teeth, but he didn’t listen to my mom. He said that I was too small to get teeth braces or any other procedures. So I had to grow up listening to people talking about my unclear speech behind my back. I did get teeth braces after turning 16. After 2 years of patience, my teeth got fixed, but still, my words remained unclear as my lower jaw is slightly misplaced. I put my heart and soul to fix my speech impediment but still, I feel frustrated and insecure about what people may think about me. But I did try some tips for improving my speech- 1. Try to use small sentences or phrases by breaking up long ones. You can easily speak slowly using small sentences and it’ll be clear. 2. Some mild speech disorders can be treated with speech therapy. I didn’t do therapy because I believe I don’t have a disorder, it’s mainly due to my slightly displaced jaw. 3. Though I didn’t do therapy, I tried some breathing exercises which really helped me. 4. Try not to speak when you are excited or angry as it will make the sentences more unclear and you may become frustrated if anyone asks you to say the words again. Try to make yourself calm before talking to someone in excitement. How can you help someone with a speech impediment or communication problems?
Resources on Speech Disorders: The following resources may help those who are seeking more information about speech impediments. Health Information: Information and statistics on common voice and speech disorders from the NIDCD Speech Disorders: Information on childhood speech disorders from Cincinnati Children’s Hospital Medical Center Speech, Language, and Swallowing: Resources about speech and language development from the ASHA AninditaOkay, so a lot of people have their own viewpoints on what autism actually is, and a lot of these opinions are media based. Autism Spectrum Disorder is a developmental disorder, and has many different factors, including but not limited to, social interaction, communication (both verbal and non-verbal), intellectual capacity and repetitive behaviours. When people hear autism, they typically think of Rainman, Sheldon Cooper, or the highly intelligent, quiet person at school that is socially awkward. That is autism, but that isn’t solely what it is. I was diagnosed a few months ago with high-functioning autism. This basically means that I’m able to communicate to a degree, although I find it difficult, and I struggle picking up on a lot of different social cues, and struggle in some social situations. I do have a higher IQ than a lot of people my age, and I have some extreme obsessions, namely with music. It’s my strongest passion. Mention George Ezra or Lewis Capaldi and I could talk for hours with no issues. It took 17 years for me to actually be diagnosed, because first of all, I’m a girl. There are so many differences between boys and girls being diagnosed. Boys display autism differently from girls. It’s so much harder to receive a correct diagnosis as a girl, often being told that it’s “typical girl behaviour” because of our obsessions, or social awkwardness and that all girls do it. I showed behaviours from a young age, but was told “I’ll grow out of it.” I didn’t. Fast forward to age 15, I was receiving some help for my anxiety when I was asked about my thoughts on Autism, and if I thought I maybe had it. At first, I was in denial, going off the stereotypes. I did some research, and deliberated for a while. It makes so much sense. I went through a test called an ADOS, which is used to help diagnose autism in children and young people, and a week later I was given a diagnosis. I’ve found over the past few months, when I tell people about autism, or have seen other things on social media, there are a lot of misconceptions and people jump to conclusions. I want to address a few of these. “You don’t look autistic.” This is probably one of the worst things that you can say to someone who has been diagnosed. There isn’t a set look when you’re autistic, it’s not like we have 3 eyes or a horn coming out of our heads. “Oh my god you must be so smart can you do my homework?” No. I’m not doing your maths homework. Or your science homework. I’m hopeless at both, they’re not my thing at all. “Are you sure you’re autistic? You don’t act like it?” This is one of the more annoying ones, where people look taken aback because you’re actually able to engage in conversation. “Don’t you have those ear defenders things?” Nope, I like to joke about it with close friends, but I can actually process a lot of sensory things. They’re helpful, but I’m not reliant on them. Now this one is even more annoying, but people try to compare me to another autistic person they know. “Oh but my friend's cousin's sister is autistic and she’s non-verbal.” Okay? It’s called a SPECTRUM. Where everyone is completely different. This also means it isn’t just a straight line, with non-verbals at one end, and high functioning, maths geniuses at the other. It’s so much more complex than that. No two autistics are the same. So, I hope I helped with some of the misconceptions. For any autistics, or those waiting to be diagnosed, if you ever want help, I’d highly recommend looking at the National Autistic Society’s website. They have a lot of information, and in some areas, they even have support groups, which I personally think could be brilliant! -Alicia Alicia
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Teenagers With Experience is an online organisation created to provide teenagers worldwide with an online platform to share their own experiences to be able to help, inform and educate others on a variety of different topics. We aim to provide a safe space to all young people. You can contact us via email, social media or our contact form.
Please note that the content on this website is created by teenagers. While we strive to provide accurate and helpful information, it is important to remember that we are not professional experts. If you are experiencing a crisis or need professional advice, please reach out to a qualified mental health professional or a helpline. |