Kids With Chronic Illness – Part 2

This interview is the second in my series on kids with chronic illness. This time I interviewed my niece J, who is 18.

Sarah: Can you please tell me what illness/illnesses you’ve been diagnosed with and describe its/their symptoms to me?
: ADD, which makes it difficult for me to concentrate in classrooms and keep on task with certain things.I also have dyslexia. Basically it makes it difficult for me to do maths and reading. It makes letters and numbers jump around on the page when I’m trying to read or write and I tend to write numbers backwards sometimes. It’s a difficult thing to deal with, but something I’ve dealt with for quite some time.
Auditory processing disorder – This is difficult to explain. It involves a lot of different parts. It’s a speech disorder where the receptors in the brain don’t connect to the processing centre correctly, so when I’m thinking of something I want to say it takes extra time to get it out properly because my brain has different connections to normal people. For me it’s a complete zigzag where my brain has to go through different connections for me to do certain things. When I was younger, I had a lisp which was caused by this. All it really meant at that time was that I couldn’t pronounce “s” properly and was teased a lot at school. I went to speech therapy for a few years. My teacher made it fun to learn and I really liked her. She was a sweet older lady who worked with a lot of kids with different kinds of speech problems.
Gluten intolerance – an irritating nuisance considering I lived off pastries beforehand and had a deep love of them (Sarah: note that J’s mom also suffers from gluten intolerance/celiac, so this really is genetic).

Sarah: How have these diagnoses changed your life?
: Gluten intolerance is easy to deal with as it just involves changing your diet. The other three basically mean that I’m cornered from all directions and it’s made it very difficult for me to have a normal school life. It’s a really big hassle that I’ll be dealing with my entire life and basically the way it works is if someone has dyslexia they reroute their brain, but after I deal with that I still have to deal with my auditory processing and then deal with ADD, which is nearly impossible. I feel very overwhelmed and the worst part is that most teachers don’t really try and help. We have a really bad teacher who thinks that learning disabilities are excuses parents use for their children. He’s a complete jerk and I wish he would be fired. What he said exactly was: “You may say your child has a learning disability, but you’ll still get them a driver’s licence. How do you expect them to stay in their lane if they have such horrible learning disabilities?” People with learning disabilities have brains that work differently. Their brain will reroute different tasks in order to do different things. It takes me longer to do maths or read a book as each disability reroutes my brain. Luckily, I have found a way to deal with my ADD by spinning a pencil in my hands or doing something with my hands while reading or doing maths to help me to focus.

Sarah: How have your friends and family reacted to your illness/es?
: My mom had some difficulty with this when I was a lot younger as it was a big hassle for me just to tie my shoes – a huge hassle! She’d tell me to go get something and I’d get distracted or my brain would wonder off and come back with something different. I can be irritating sometimes because of this because I am easily overwhelmed by having too many things to do, which is why chores are such a hassle to me. S, my step-dad, will ask me to do one thing now and mom will ask me to do another and I have no idea which to do first. When that happens, I end up just not doing anything – translation: I am a lazy teenager, even though I realise that this is perhaps not the smartest approach.
[As J’s mom H puts it: “The right approach is attempting to get J to be more of her own advocate and for me to take a step back – this is known as “pushing the bird out of the nest syndrome” and it’s tough love. What’s particularly important with kids with disabilities is that you have to remember to teach them independence and this has to be the focus from a very young age. I make my kids wash their own clothes and do the dishes because this is what the therapist engrained in us when J was young. It gives kids a sense of accomplishment, particularly autistic kids. We both believe that she (J) has mild Asperger’s. It seems to fit in with some of her frustrations. We’re going to schedule her an appointment to get her hormones checked to see whether this might also play a role as she’s been feeling so emotional and tired. She needs to have her thyroid checked because of the sudden change in her eyes (rapid worsening of eyesight). (Sarah: H also suffers from hypothyroidism, so there is an increased risk that daughter J might too)].

Sarah: How has this affected things at school?
: The teachers are the biggest problem for people who have problems with either learning or concentrating. Most teachers think that there’s nothing they can really do or they just don’t care. So it’s just irritating. If you try to tell them, they either blow you off or say they’ll try to accommodate you and they never do. It’s just really irritating. All I need is a little extra help or time. That’s basically it. It’s just the teachers and the school system that are getting on my nerves. My teachers, for example, they say they’re trying to help. A couple of them are, but the problem is the school system. It’s not just the teachers.

Sarah: Has anything positive come out of this?
: Because my brain is rerouted a little differently than most, my art has come out of this [Sarah: indeed, if you have ever admired the Butterflies & Phoenixes logo, that is courtesy of J and her mom]. Since I was very little, I’ve always been into drawing, which has given me something to focus on and helped me to concentrate. If I’m supposed to be paying attention in class, I will doodle to help me focus on what they are talking about because my hands are moving. The only downfall is that most teachers think I’m not paying attention. It’s frustrating that there is nothing you can do about your disabilities. Each state has a different school system and handles students completely differently.

Sarah: What has this experience taught you?
: To appreciate other people who are disabled or have severe autism, etc. I’ve become a lot more patient with other people and myself. I’d like to think that it’s made me a nicer person and I guess it’s given me a better opportunity to think more about certain things. It allows me to sit back and just think about the other people I’m around and what they are going through. I have become more empathic. By being able to do that, I’m able to pick my friends very carefully. Now things aren’t as bad as when I was younger. I’ve managed to deal with most of the problems. My school friends know I have some learning disabilities, but apart from that they think I am perfectly normal … other than being a complete nerd!
This has also taught me self-control, which I need to stop myself from wanting to smack my brother. When we were younger, it really wasn’t as much my fault as it was his because when he was really young he wasn’t medicated yet and because of his ADHD I really wanted to kill him. Because he couldn’t sit still at all ever. He and I never really got along because I tried to sit still, meditate and deal with my problems and he would come over and bug me because he didn’t feel like sitting still. Now it’s a lot easier because he realises somewhat what his problems are and luckily we don’t have big fights over minor things like who ate the last of the food, etc.

Sarah: If you could change anything about the way society deals with chronic illness in minors, what would that be?
: I’d want them to be more open-minded about people like me and care more about other people than about their jobs, their money and what they get. That would just help society so much if people weren’t so greedy and cruel to each other.

Sarah: Would you be interested in being put in touch with others in your situation?
: Yes. Depending on the person and their situation and whether they are open to talking to somebody else. Phone would be better than email as writing makes me feel self-conscious. Sometimes my friends forget this and point out my spelling errors, which irritates me and makes me feel angry because I got teased about this when I was younger.

Sarah: Thank you very much for your participation and for helping to raise awareness for others in your situation.

By Sarah Downing

My name is Sarah. I was born and grew up in England and currently live in Düsseldorf, Germany, with my fiancé Corey and my cuddly cat Biscuit. I work as a translator and writer for my own company Aardwolf Text Services ( and I love vintage clothes and music, as well as singing karaoke.

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