The YEAH Council features a different disability each month experienced by one of our Council members. Here we share resources, helpful sites, book recommendations, a little bit about the disability in general, and specific stories from the Council member or members who have that particular diagnosis or something similar.

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Anxiety

Anxiety is by definition the act of feeling nervous or afraid about something or someone. Everyone feels some sort of anxiety in their life at some point but normally, it is caused by something that actually should cause you to feel nervous. Those with an Anxiety Disorder are plagued by constant anxiety caused by a number of different things that most people wouldn’t feel nervous about like being in public(Social Anxiety Disorder), being alone (Separation Anxiety Disorder) or literally nothing at all (General Anxiety Disorder). These disorders can range in severity from the usual symptoms of sweating and feeling queasy to having full on panic attacks or being unable to move or think.

More specific anxiety disorders are often triggered by a certain event in one’s past and are often treatable to some degree through the use of medication and/or counseling although there is a chance that the anxiety will never fully dissipate. On the other hand, GAD is often a result of genetics and while it can also be treated by medication or sometimes a change of location, it is rarely something that can be fully overcome.

For more information, here are some additional links on the subject for you to explore:

The National Institute of Mental Health https://www.nimh.nih.gov/health/topics/anxiety-disorders/index.shtml

Anxiety and Depression association of America https://www.adaa.org/understanding-anxiety

HelpGuide.Org https://www.helpguide.org/articles/anxiety/anxiety-attacks-and-anxiety-disorders.htm

Here are some stories from Friends and Members of the YEAH Council about dealing with Anxiety Disorders:

Karen’s Story

I am someone who has a social anxiety disorder. Social anxiety is a phobia, it means someone who has an outrageous and unreasonable fear in social interactions. Intense-nervousness and self-consciousness occur from a fear of being closely-watched, judged, and criticized by others. A person with this disorder are afraid of making mistakes, looking bad, be embarrassed or humiliated in front of others.

Living with any kind of disability is tough, it’s not easy. I developed social anxiety due to being bullied a lot when I was a childhood. I got to a point in my life when I was younger and started remembering what people said to me. When I said hi to a classmate, smile, and wave. They normally said, “Get lost retard. We’re not friends” So I got older and it got harder to communicate with people and making friends. I remember asking a substitute teacher if I could use the bathroom and she told me, “No, sit down, shut up and read.” I had Encopresis, it’s a condition when a child resists having bowel movements. I was potty-trained when I was a little girl but I had a major seizure and my brain kept forgetting to tell me that I need to go. My parents tried potty-training me again but nothing would work. So I was thirteen and just started seeing a professional for help and this teacher wouldn’t let me use the bathroom so I had an accident and forced to sit in it until school was over. I stopped wearing sweatpants in public for a while because kids would laugh at me and tell me I look so fat in them. Every time I saw a pair of sweatpants, it reminded me of that moment. I had a fear of talking on the phone, I could talk to my relatives, or people that I know but I couldn’t talk to people like calling in and ordering a pizza, or scheduling a doctors appointment, etc. I didn’t like big crowds, I always felt like I don’t fit in and everyone keeps looking at me. At one time, I absolutely was in fear of buffets, I kept remembering what people said to me, “Hey, watch it fat ass” “You’re so fat, I’m surprised you haven’t blown up already.” I couldn’t walk up in buffet lines I assumed the person behind me was thinking that.

When I got to high school, everything changed. It took me 6 months to open up to a counselor in my high school. I made friends, and I raised my hand, asked questions. It took me until I was 20 to start making phone calls, doctor appointments, ordering out, etc. I try to get out of my comfort zone, when I do get out of my comfort zone, I get a bit of relief and proud of myself. I try to tell myself that people have so much going on in their lives, they aren’t paying much attention to mine. Living with social anxiety isn’t easy, communication is important to all relationships. Order to have a connection, you have to be able to communicate to them in a way whether it’s sign language or speaking different language. Only way people can help you is to talk. I also learned that everyone makes mistakes, everyone has their own sense of style so there is no such thing as looking bad. People criticize, judge and body sham but those are the type of people who you just can’t control. You only know the real you, you know who you are and that’s something you have to remember and tell to yourself that you’re smart, handsome, beautiful, etc. People can tell you you’re not but those are the people who are wrong.

-KS

Maggie’s Story

As a performer, having anxiety is very strange. I mean, I’m able to get up in front of a crowd of 300 people and sing a staged lament without so much as a single butterfly, but getting up in front of the class for a presentation feels impossible. I guess it’s because when I’m acting, I don’t have to be me.

The first time I remember being anxious was in 2004. Coincidently, it’s my first memory ever. I was in preschool and got a toy key stuck in a seashell. I thought my teacher was going to be furious with me, that she was going to call my parents, that she’d yell or send me home or something. Obviously that wasn’t going to happen; I was four years old and people make mistakes, accidents happen. However, that didn’t stop my heart from pounding inside of my little chest or my cheeks for burning bright red. My hands were shaking and my whole body felt like it was going into panic mode, like a fight or flight type of life or death thing.

It was years before I realized that this wasn’t normal. My anxiety kept me up at night as a child and I would often be awake worrying at two or three in the morning.  Sometimes it would get so bad that I would have to wake my parents up. Eventually, they sent me to a child therapist who I saw for a few years. Once I was able to sleep through the night, I stopped seeing her. We thought everything was fine, and that whatever fear I had was cured. It turns out, it wasn’t that simple. Shortly after that hurdle left, many more followed. The path was never clear for me, and eventually I realized that this is something that I was destined to live with for the rest of my life. This eventually led me into a depression, where my parents and I decided it was best for me to go back into therapy, this time with a different woman. I saw her for about three years; she was very nice but I didn’t really click with her, and although we talked about my anxiety, it didn’t feel like we were pushing through to anything.

It really wasn’t until I started seeing my current therapist that I felt real progress was being made. I slowly started to be able to do little things I’ve always struggled with, like calling to order lunch or talking to the woman at the front desk at school.

So, I know this was supposed to be about how anxiety has effected my life and that’s not quite how it turned out, but it holds a message I believe is extremely crucial to anyone suffering from anxiety, and that is to keep working through it. It’s okay to ask for help, it’s okay to work through struggles at a slow pace, and it’s okay if things aren’t easy at first.

The bright side of things not being easy at first is how good they feel once they become easy.

Premature Babies

Premature babies are at greater risk for both short and long term complications; including disabilities, health conditions and issues with growth. Significant progress has been made in the care and treatment of premature babies, but not in reducing the numbers of pre-term births. One of the last organs to develop in utero are the lungs, consequently many premature babies spend time on ventilators and have respiratory issues. There are some drugs that can be used to accelerate maturation of the fetus. The earlier the baby is born the more likely for long term complications. The earliest weeks at which the infant has at least a 50% chance of survival is referred to as the “limit of viability”. As medical care has improves this age of viability has been reduced to approximately 24 weeks. There are rare stories of survivors as early as 21 weeks. There is a significant risk of brain damage and developmental delay at that age. Having a premature baby is very hard on families as each day can be scary. It can be very traumatic to see your tiny little baby hooked up to wires and monitors and machines and some times the amount of contact a family can have with their premature baby is limited. Many premature babies will adjust well through childhood and adolescence.

Cordelia’s Story

A few words from Cordelia, a council member who was a premature baby: I was born three months premature at Brigham and Women’s Hospital in Boston MA. My due date was supposed to be November 10 and I entered the world on August 10 1985. I was a micro preemie and was 25 weeks gestational age. At the time my parents lived in Rye New Hampshire. I lived in the hospital for six months. During that time my parents came and visited me. Even at that time I was aware of who my parents were. My parents would have special ways of interacting with me. In January of 1986 I was finally discharged and came home to New Hampshire. About a month later I was diagnosis with Respiratory Syncytial Virus aka RSV bug. I went back into the hospital for another three months and it was an uncertain time for my parents. During that time the feeding tube was placed in. In May of 1986 I was discharged for a second time. I had an oxygen tank and a feeding tube that was with me. I went back and forth to Boston and had health care in New Hampshire. My lungs were able to get new tissue to cover the scars up. Although my lungs are damaged from all the work it took to keep me alive.

By 1993 I was using oxygen only at night. No one could believe how much progress I had made in a few years! In 1995 I got my feeding tube removed at Children Hospital in Boston. Having special health care needs is a roller coaster and I give credit to my parents for working together as a team during that time. Even after they divorced they always supported me in my interests. Today I am an advocate for people with disabilities. It been a long journey but I would not have it any other way.

Two resources that helped the family of our Council member who was a preemie: References Born Early:The Story of a Premature Baby Mary Ellen Avery 1983 little brown Baby Girl Scott May 24 1987 John. Korty, Director John Lithgow Mary Ellen Hunt

Matthew’s Story

A few words from Matthew, a Council member who was a premature baby: I was born a month early. My lung collapsed 30 minutess after birth, and while they were able to re-inflate it, I live with the aftereffects to this day. I was diagnosed with Pulmonary Hypertension in Middle School and have had to wear oxygen when I sleep since that time. It has also caused me to have to go to the hospital for frequent tests to determine that I am not getting worse. I also have to get a blood test every month to make sure my liver isn’t affected by the medication I am taking for this problem. My due date was September 12. I was born August 12. I lived in the hospital for 444 days at first and then I was in and out because I didn’t eat and I was and am chronically thin. I had to have a Fundoplycation, and a feeding tube put into me at 10 months old.

The web is full of resources to help support families with a premature baby:

http://www.prematurity.org/index.html

http://www.comeunity.com/premature/

http://home.vicnet.net.au/~earlyed/welcome.htm

http://www.premature-infant.com/

http://www.preemieparents.com/

http://kingproductions.com/

http://preemie.info/wp/

http://www.preemie-l.org/newparents.html

http://www.preemievoices.com/resources/

There are many, many books that offer support, help and advice for families, here are some of them:

Newborn Intensive Care: What Every Parent Needs to Know Edited by Jeanette Zaichkin Parenting

Your Premature Baby and Child: The Emotional Journey by Deborah L. Davis and Mara Tesler Stein

The Preemie Parents’ Companion : The Essential Guide to Caring for Your Premature Baby in the Hospital, at Home, and Through the First Years. By Susan L. Madden

Your Premature Baby and Child : Helpful Answers and Advice for Parents Amy E. Tracy, Dianne I. Maroney

Breast Feeding Your Premature Baby by Gwen Gotsch

Your Premature Baby : Everything You Need to Know About Childbirth, Treatment, and Parenting. Frank P. Manginello, Theresa Foy Digeronimo

The Premature Baby Book : A Parent’s Guide to Coping and Caring in the First Years Helen Harrison, Ann Kositsky

Your Premature Baby: The First Five Years by Nikki Bradford Preemies : The Essential Guide for Parents of Premature Babies by Dana Wechsler Linden, Emma Trenti Paroli, Mia Wechsler Doron M.D

 

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