My Log

Connecting the world & creating awareness for those with disabilities.

Isabella Eisenmann

"Isabella opens her heart to share her story and to give readers a digital platform that facilitates the interaction between teenagers and adults that live with a sibling or relative that has a disability. This book will allow you to understand your feelings and emotions, how this situation affects you, how you react and who you can rely on. Its an excellent resource for self discovery and the overall therapeutic process."

– Licedys Rodríguez Sosa, Panamanian psychologist with 18 years of experience - in approaching individual differences, of both children and teenagers.

"Talking to yourself is a complicated task; telling your body what you feel is easier said than done. We constantly strive to be independent and self-sufficient, but can we truly be emotionally self-sufficient? When we experience mental or emotional pain, it’s hard for us to elaborate or express ourselves. MyLog is a tool that will help you and your loved ones understand what you are going through, as well as understand what you are feeling and why you are feeling it. The tool will allow you to fall down, but also pick yourself up every morning.

MyLog will allow you to give meaning to your pain and to truly embrace happiness."

– Getza Barragán, Clinical Psychologist & Integrative Therapist

1

• My Log •

2

A SELF-HELP ACTIVITY JOURNAL FOR PEOPLE LIKE YOU, WITH A FAMILY MEMBER WITH A DISABILITY, TO HELP YOU MANAGE OVERWHELMING EMOTIONS AND BE HAPPY. Isabella Eisenmann

3

• My Log •

Publisher’s Note This publication is designed to provide accurate and authorized information in regard to the subject matter covered. It is distributed with the understanding that the publisher is not engaged in rendering psychological, financial, legal, or other professional services. If expert assistance is needed, the services of a competent professional should be sought.

Cover design by Isabella Eisenmann Edited by Marcos Cavassuto Content by Isabella Eisenmann Text design by Isabella Eisenmann

All Rights Reserved Printed by Blurb in the United States of America Code: mylogbook16

4

To Patricia, Roberto III & Roberto IV

5

• My Log •

6

Contents

9

Acknowledgments

11

Introduction

15

Chapter One Let’s talk about the basics

21

Chapter Two Unconditional love and acceptance

33

Chapter Three Emotional intervention

41

Chapter Four Impact of disabilities

49

Chapter Five Coping with loss

59

Chapter Six This might bring you all together

65

Chapter Seven Bottom Line

68

Testimonies

84

Glossary

92

References

7

• My Log •

8

Acknowledgements

This book grew from the people whom I am fortunate to call my family. It has been my all time dream to share our life experience with the world and to connect with all the families out there who go through situations similar to ours. Specially, I wish to help others to have less of a struggle dealing with situations such as ours.

To my brother, Roberto, who is my main inspiration in life. Every single day he teaches us that impossible is nothing and that with patience and hard work you can get to places that you would of never imagined.

To my parents, Patricia & Roberto, who have been the best role models and parents I could have ever asked for. Since the moment my brother was born, they turned into heroes and gave their all to give my brother the best possible life and opportunities to succeed.

To Marcos, who in the past three years has been the best friend and confidant I could have asked for. Thank you for listening to me, for loving my brother and for treating him like your very own family member.

9

• My Log •

10

• Introduction •

Introduction

If you are reading this right now, you probably have a family member with a type of disability. Whether you purchased the book or someone gave it to you, this is already a step forward, a healing self-help process where you will discover things about yourself, discover hidden feelings, get educated on some topics, learn to bond with this family member and learn to acknowledge this “issue” and turn it into a beautiful aspect of your life. Most importantly, you will learn that having someone close to you with a type of disability is a blessing and this will turn you into a better person. You will turn into an understanding, patient and appreciative person. You will learn to value the little things and the small steps the person takes each day.

I spent all my childhood living in psychologists' offices trying to deal with these issues, but I think there is a better way to do it. In my case it is my little brother who has a disability.

Trust me, this will be a better and fun way to do it. Sometimes I felt overwhelmed by the therapists’ questions, confused or even bored of the same ones. At other times I felt like being alone and talking to no one but myself. This book will be the perfect mix, I promise!

You will get a chance to learn at your own pace, get educated, let go of your feelings and fears and even get to bond with this person.

We will start talking about the importance of what a disability is. We will walk through the meaning of the word and how the term is blurred. You might be thinking that you already know what it is and that it seems ridiculous to even spend a chapter talking about it, but trust me, you will learn new things you didn’t even know before. Every single person has a type of disability, no one is perfect. Not having perfect vision, for example, is one too.

See? Almost everyone, if not all people, have a disability one way or another.

The second chapter is about unconditional love and acceptance. You will read about Andrew Solomon’s view on this topic and will find that with unconditional love people with disabilities can reach levels that are probably never thought possible. Love is the most

11

• My Log •

powerful feeling one can have and people with disabilities deserve that and more. The most important thing is that they deserve to be treated equally.

You will learn how disabilities "vary along several dimensions, including the degree and type of incapacitation and how different experiences some can have rather than others. In some cases, the conditions that are noticeable to the naked eye, are believed to be fake or exaggerated. People expect some sort of proof that they are telling the truth; when in other cases when they are physically noticeable, people are treated with advantages to help them have an easier time."

The impact disabilities have on the lives of the family members is huge. In this book you will learn about how it impacts the family members and the extended family members as well. This chapter will also touch upon topics such as financial burden the family will encounter and the decision making on whether the person should live independently. Talking about the condition with other people is also a big and very important topic that you will learn about here.

The hardest topic I wrote was the one on how to cope with the loss of these people with disabilities. I am a strong believer that we all come to this world with a set of goals and things to do; some people come for a shorter time and others are here to stay a little bit longer. We have to learn to celebrate the life of those who leave before us. It is a scary topic to talk about, but very necessary to understand. Not one person will leave this world alive, this is one of the things that we are all scared of but can't do anything about. When these things happen we might feel lost, empty or scared and it is completely normal. I am hopeful that you will finish the chapter and be a little more open about it.

Lastly, I will tell you about how this will bring you all together or break you. Because it is extremely important that you are ok with yourself before you help others, you must pay attention while reading this chapter. Group work and an open mind are crucial. Hopefully after reading all of the other chapters, you will be ready for this one.

At the end of reading this book, the goal is for you to be at ease with your feelings and thoughts.

So, I applaud you for taking this initial step. Taking this initial and crucial step towards accepting and embracing this life challenge will prepare you for the next most important one, which is strengthening and reinforcing the family bond. The entire process in which your family copes with this will be a difficult one, but rest assured it will be totally worth it. You will read, learn, write and be creative with the activities that the book has for you. Give it your all and make it yours. Remember that this is your space, take advantage of it because no one is here to judge!

12

• Introduction •

Activity Welcome to the first activity. Before we start, you will write a little bit about yourself and about your initial thoughts and reactions. Fill in the following lines.

Name: Age: Nationality: Family member type: Number of siblings: Disability your family member has:

Birth date: Gender:

Reasons why you are reading this book:

Initial reaction of the book:

What you hope you learn after reading the book is:

What you know so far about the disability your family member has:

From 1 to 10, how bad is the situation at home (10 being the worst):

13

• My Log •

14

Chapter One

Let’s talk about the basics

I want to start with the basics. The reason you found yourself interested in this book and purchased it is because you are connected to someone who has a disability. But, what is a disability? This word is so mainstream and so commonly used, that the real meaning of it has been blurred or misrepresented with time. There are countless types of disabilities which are visible to the naked eye and thus ignored. It is through my own experience that people tend to ignore disabilities that are not visible or immediately identifiable.

Activity So let me ask you this, in your own words, what is a disability? Fill out the empty lines.

Disability defined.

According to a trustworthy source, the word disability is defined as “a physical or neurological condition that limits a person’s movements, senses, or activities” and some synonyms for it are handicap, disablement, impairment, infirmity, defect, abnormality, condition, disorder and affliction.

As you probably already realized, the word “disability” encompasses a wide variety of cases and situations. You might be thinking about many other people you know that also have a type of disability and you had never even thought about it. Anything that causes a person to be limited somehow, is a disability. That’s the beauty of life, every single person has a type of disability, simply some have it a lot harder than others. So, was your answer you wrote above correct or close enough to the definition?

15

• My Log •

I stumbled upon an organization called WHO or World Health Organization and found their way of explaining what a disability is. They do it beautifully.

To them a “disability is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations”.

“Disability is thus not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives. Overcoming the difficulties faced by people with disabilities requires interventions to remove environmental and social barriers. People with disabilities have the same health needs as non-disabled people. They also may experience a narrower margin of health, both because of poverty and social exclusion, and also because they may be vulnerable to secondary conditions, such as pressure sores or urinary tract infections. Evidence suggests that people with disabilities face barriers in accessing the health and rehabilitation services they need in many settings”.

And it is indeed a complex phenomenon which none of us will ever escape from. Whether you have a family member born with one or as you grow old, you will inevitably be related to someone with a disability or even yourself. Being comprehensive and understanding is paramount because one day it could even be you and what you would love see is others giving you a hand instead turning their back on you and your family.

Activity Mention people directly related to you that live with a type of disability.

Name What their disability is

16

• Let’s talk about the basics •

Education & employment; Inclusion for all.

This is part of the inclusion into society we just talked about. UNESCO researched how many children with disabilities in developing countries are not attending school and they found that the total is shocking. They found that 90% don't go to school. This lead to researching about "global literacy rate for adults with disabilities" which they found to be "as low as 3 per cent, according to a 1998 UNDP study". This is absurd. In some extreme cases, it is understandable that some people with disabilities don't have the ability to go to school and get educated, but in other cases they are totally capable of doing so with some adaptations here and there. Parents have to push this because although the children won't be learning at the same rate the other children are, at least they are out of the house exposed to another environment and exposed to children their age. This will help them become more social and perhaps learn more skills. In the United States, inclusion to society is a topic which is extremely advanced compared to how it is in other countries. In Latin America, we are way behind. We have no special school for children with disabilities and I can count with one hand the schools that are willing to accommodate the needs of children with disabilities. It is a sad reality.

In our experience, when we started going to The Institutes in Philadelphia, they felt strongly about not sending these kids, like my brother, to school. They said it was a waste of money and time because those places would not do him any good. My mother followed everything they told her except for that. She had a complete different opinion and thought that a place like that would be the best therapy in the world. My brother started school a year after he was supposed to in a school called Panamerican School in Panama City, Panama. He has been going since pre-k with his tutor and companion, Indira. She wears the same uniform all the school teachers wear and goes with him to class. Every single thing he learns in school is adapted to his capabilities or learning. They try to talk to him about similar things which are being talked about in class with the rest of the classmates.

He has a shorter schedule than his classmates because he goes until noon because of his ongoing therapies at home after lunch. After 14 years, he is now graduating high school this December 2016 and we could not be any prouder. This was the best decision ever.

Job opportunities reflect the same story. Many places won't accept people with disabilities, but every day more and more places do. Unemployment among people with disabilities is as high as 80 per cent in some countries (ILO). This happens because employers assume that people with disabilities are unable to work. I beg to differ. "A 2004 US survey found that only 35 per cent of working-age people with disabilities are in fact working, compared to 78 per cent of those without disabilities" (IDRM). Thousands of people with some sort of disability have been "successful as small business owners" according to the U.S. Department of Labor. We have to understand that these people are

17

• My Log •

just like us, but with some extra difficulties to deal with in life. The sad thing is that when someone is not connected with a person with disabilities, it is hard for them to understand all of this. As soon as they are connected to someone, they open up. Why can't people open up without having to experience it first hand? Think about it.

Before we move on to the next chapter, I think there are a few statistics you should know about people with disabilities. This will make you feel that you are not alone in this and that you are probably “lucky” about being able to economically support this family member of yours.

OVER BILLION PEOPLE GLOBALLY EXPERIENCE SOME SORT OF DISABILITY

THAT MEANS

18

IN

• Let’s talk about the basics •

REHABILITATION AND ASSISTIVE DEVICES CAN ENABLE PEOPLE WITH DISABILITIES TO BE INDEPENDENT. MAKING ALL HEALTH CARE SERVICES ACCESSIBLE TO PEOPLE WITH DISABILITIES IS ACHIEVABLE AND WILL REDUCE UNACCEPTABLE HEALTH DISPARITIES.

200 MIL PEOPLE NEED GLASSES OR OTHER LOW-VISION DEVICES AND DO NOT HAVE ACCESS TO THEM.

70 MIL PEOPLE NEED A WHEELCHAIR. ONLY 5-15% HAVE ACCESS TO ONE.

360 MIL PEOPLE GLOBALLY HAVE MODERATE TO PROFOUND HEARING LOSS. HEARING AIDS’ PRODUCTION ONLY MEETS 10% OF GLOBAL NEED AND 3% OF DEVELOPING COUNTRIES.

19

• My Log •

20

Chapter Two

Unconditional love & acceptance Love, by definition, is an intense feeling of deep affection; fondness, tenderness, warmth, intimacy, attachment and endearment. It is an assurance of affection and by all means the most spectacular, indescribable, deep feeling for someone. Love is a very powerful word and when there is unconditional love and affection, there are no limits or conditions. It’s when you would do anything for another person and all you want is to make them happy.

Love is accepting the person just the way he/she is, with every single quirk.

“Love is patient, love is kind. It does not envy, it does not boast, it is not proud, it is not rude, it is not self seeking, it is not easily angered, love keeps no record of wrongs. Love always protects, always trusts, always hopes, always perseveres. Love never fails” – 1 Corinthians 13:4-8 So, what about unconditional love.

When a member from a family has a disability or a special need, the family is often faced with questions which they probably have no answer to. The most frightening part is that sometimes those answers can only be answered by themselves.

I watched a TED talk, the best one I’ve seen so far, by Andrew Solomon called “Love, No Matter What” and in those 23 minutes I learned a lot. I’ll tell you a little bit about what he talks about, but watch it when you can. Andrew explains how many families with special needs children, with no cure, want them “to function in the mainstream world”. These parents are often scared about what people will think about them and are also scared about the questions of identity this person with special needs will have. They have an idea of what a “normal” child is like and what the “normal” child does on a daily basis and often end up in denial wanting their child to do the same things. At first they have a hard time understanding the limits this child/person might have and what really makes this person happy. They live worried about what others might think, what others will do and what kind of identity this child will have, etc. They have to understand that every single person in

21

• My Log •

this world has some sort of problem, because no one is perfect, and that the identity of that child will come out on its own.

Often parents think that their children have to be a copy of who they are, and when they are not, it is the end of the world. Andrew explains that there are “two kinds of identities”.

He calls them “vertical and horizontal” identities. Vertical identities are things such as race, religion and everything passed on directly by your parents. Horizontal identities are those learned from a peer group and these are alien to your parents; these are the ones parents often try to cure.

There are three levels of acceptance for people with disabilities; self acceptance, family acceptance and social acceptance. Some people, such as my brother, have a low cognitive development and in cases like his, they are barely aware of what people think of them but family acceptance is crucial. Others who do understand a lot more, might fear from the parents or the distance from the siblings and might feel sort of rejected. In reality “what happens is that the parents or siblings might not accept them fully because the healing takes time, but love is unconditional” and they’ll do anything possible to step up.

So then it is clear to me that getting help is the first thing a person has to do when a situation like this arises in the family.

With unconditional love from family members, people with disabilities can reach levels that are probably never thought possible. It is with hard work and endurance that things can get done, but it is also about team work and the family has to become a team.

Activity List here your direct family members and what their role with this special person is. Fill out the empty lines below.

22

• Unconditional love & acceptance •

Think about your family members, how they have helped this person and how important each of them is. You might find some members of the family who don’t know how to deal with their emotions and often do end up being distant. Let them know that it will all be ok, talk to them about this, communicate and never let it become a taboo. As you read this book, you will find ways in which writing and completing activities will help you manage your emotions, thoughts and fears.

Activity Use the blank space to draw your immediate family. In the lines below, write a little bit about each of them. Mention what could be possibly done for them to bond with this special person and connect. Fill out the empty lines below.

23

• My Log •

And what about acceptance.

As a family member of a person with special needs you have to be aware of how lucky you are. With time you will all learn to applaud this person for every step he/she makes towards progress. You will see that “light” in this person and will be lucky enough to be the first ones to notice it. Let this person know, make them feel it and feel special. Even if they learned something so insignificant to you, such as pasting a sticker to a page or grabbing a pencil, applaud them. Those are fine motor skills that many kids, like my brother, lack and are incredibly difficult to learn. It is with infinite therapy and effort that they thrive in their own difficulties.

Andrew mentions how “we live at a point when social acceptance for these conditions is on the up and up. And yet we also live at the moment when out ability to eliminate those conditions has reached a height we never imagined before”. Technology has indeed helped the world advance and progress in order to make the lives of these special needs children easier.

Activity Think about things this person has thrived in doing and list them. Fill out the empty lines.

Learning to accept people with disabilities should come naturally, but in some cases it doesn’t. People often think that those with disabilities shouldn’t exist or that there should be a definite cure, but not for the right reasons. Jim Sinclair, a prominent autism activist, said, “When parents say ‘I wish my child did not have autism,’ what they are really saying is ‘I wish the child I have did not exist and I had a different, non-autistic child instead.’ And as Andrew says “It is a very extreme point of view, but it points to the reality that people engage with the life they have and they don’t want to be cured or changed or eliminated.

They want to be whoever it is that they’ve come to be”. We have to learn how to love and accept everything that life brings to us, and if life brings us a person with a disability it is our responsibility of doing everything possible to make this person’s life as easy and pleasurable as it can be. It is our responsibility to treat this person equally and to love him/her unconditionally. I find it incredible how parents, such as mine, who have children with disabilities and all sorts of problems learn to find so much more meaning in that certain experience of parenting than anyone would imagine. And even at times leave aside their careers to start a new one in that path inspired by their child in order to heal and help others who might not be in their same place, emotionally.

24

• Unconditional love & acceptance •

Growing up was very hard for me, although I spent all my life in psychologists learning to manage my feelings, emotions and anything related to my brother, I still felt shame and embarrassment every time we went out with my brother (always). He had terrible conduct and would hit people at random and pull their hair out of the blue. Don’t let me get started about the tantrums. It was hard for me to fully understand how to deal with it and not feel embarrassed about what my brother had. Unfortunately, psychologists were never enough because I stopped believing in them and started keeping all my feelings to myself. This led me to be completely distant to my brother and I fully regret this now. Eventually it even led me to felt a distance to my own mother, I felt jealous and left out at times. Time heals all though, I promise and you will grow stronger than anyone because you’ve seen it all.

Activity Don’t be like me back then, don’t be scared. I’ll give you three pages for you to write about moments you felt ashamed, scared, angry and confused. Fill out the empty lines.

25

• My Log •

26

• Unconditional love & acceptance •

27

• My Log •

28

• Unconditional love & acceptance •

29

• My Log •

Activity Read through the following list and put check marks next to the skills you would like to better or learn to do, cross out those which don't seem useful to you. When you finish the whole list, circle those skills that feel ready urgent for you to master or complete. ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐ ☐

30

Having patience with him/her Going out for a ride with him/her Going to lunch with him/her Participating in his/her favorite activity Participating in his/her therapy Reading a book to him/her Watching a movie with him/her Listening to music with him/her Not getting so worked up with him/her Understanding my feelings Not fighting/arguing with him/her Not always reacting to his/her tantrums Enjoying the time with him/her a lot more Stop being so distant with him/her Tolerating his/her emotional uncertainty Accepting his/her limits Learning how to calm him/her down Helping him/her take the medicines Helping him/her be organized Bonding with him/her Take him/her to his/her favorite place Play his/her favorite game or sport Include him/her with your friends Include him/her with your loved one Talk about his/her disability Not feel embarrassed about his/her disability Helping mom and dad with his/her stuff Volunteering to help him/her in anything they need Take him/her to school/classes Be sweet with him/her Hug him/her more Smile at him/her more often Make him/her laugh Make him/her smile Be the family member you wish you had

• Unconditional love & acceptance •

Most likely you are surprised at how many of these things you don’t do or follow. It is never too late, so today is a good day to start don’t you think? Keeping all of these things in mind will help you move on towards your goals and will also help you become a better and kinder person. Keep a list, by reminding you the things you should be doing, according to your beliefs, you will soon run out of things to write down and will soon start to do all of those automatically.

You probably felt really good when writing those three pages right? Don’t go a day without writing down your thoughts and feelings. Beth Jacobs wrote in her book “Writing For Emotional Balance” about the benefits of journaling. She wrote that “studies showed journaling benefits by measures as diverse as psychological well-being, sleep improvement, immune functioning, pain levels and blood pressure (Pennebaker 2004)” and that in studies on “therapeutic writing concluded that improvement in four areas was consistently related to emotional writing: reported health, psychological well-being, physiological well-being, and general functioning (Smyth 1998)”.

Beth Jacobs says that journaling takes place inside and outside ourselves and that “when we write, our thoughts and feelings are moved outside of our minds and onto paper, but we, ourselves, are our primary audience. When we keep a journal, we can experience ourselves or parts of ourselves from the outside and the inside simultaneously”.

So, today I challenge you to start writing. Get a journal or use your computer, whatever feels more comfortable, but do it. You’ll see that by putting things on paper everyday, you will let some steam out.

Try starting out with before and after scenarios. First, describe one specific event or typical emotional scenario that bothers you. Make it personal or create a fake character, but illustrate the overwhelming situation you were going through. This will hopefully make you wish for a greater aptness to control your feelings. When you are done with that part, leave it aside for a few days. Start describing the event the same way, but this time write about how you would successfully manage your emotions.

31

• My Log •

32

Chapter Three

Emotional intervention When a person with any type disability is born or when someone develops a type of disability or condition through his/her life, there is a huge amount of “illness-related pressure and worry” (Dennis Drotar) for family members as well. What sometimes is not thought immediately is how the psychological wellbeing of the family members is needed more than anything, so getting some sort of help is crucial. In order to support the person suffering from any given condition, the entire family should be doing something to cope with everything. Their lives are about to change for good and being open about everything is key. Many problems will arise with time such as “restricted physical activity, absences from school if that’s the case, and social problems”. Don’t get me started on copying with the doctors, therapists, medicines and expense of it all. As I told you before, this process takes time but adaptation and patience is key.

Disabilities affect large numbers of children, adolescents, adults and their families. A national survey estimated that the presence of chronic health conditions in children was 18% (Newacheck, McManus, Fox, Hung & Halfon, 2000). A huge problem, setting aside the condition, is the economical situation they are in. If the family has a higher income, they have a higher chance of doing more for this person with a disability; but it the family is economically disadvantaged, which is the vast majority, “there is a higher risk of experiencing severe chronic conditions (Newacheck, 1994).

Activity How many families do you know of that have a person with some sort of disability? Write here how many you know

and then list what they have. Fill out the empty lines.

33

• My Log •

Always remember that a disability could be literally anything, it is a really broad term for a condition that “limits a person’s movements, senses, or activities” and remember that some synonyms for it are handicap, disablement, impairment, infirmity, defect, abnormality, condition, disorder and affliction. Very broad huh? Imagine all of those families and their day to day life, you are not alone in this!

Now that you read the chapter on “unconditional love & acceptance” and understand how far love can take you, get prepared to embark this journey with your family. Never let this become a taboo and learn to talk about it. Trust me, I know that dealing with this every single day is exhausting and irrelevant to talk about since you are all feeling the same thing, but letting your feelings out and letting others know how you feel is crucial. Also learn to listen, ask your kids or your parents what they are going through. Be united and strong together because these conditions have psychological impacts on everyone.

Activity Fill in the following empty spaces with names and levels from one to ten if you can:

Illness

Family Member’s

Family Member with condition

Child’s functioning level

Health care management response to procedures and treatment

34

Academic functioning and attendance

Social skills and relationships

• Emotional intervention •

The figure below is a description of the multifaceted psychological impact of pediatric chronic illness (Dennis Drotar). Compare this one with the one you filled out.

Impact of Illness

Family Member’s Adjustment

Individual Child’s Adjustment

Parent and sibling distress

Child’s distress

Family functioning

Presence of mental disorder

Child’s functioning

Health care context

School context

Peer context

illness management

Academic functioning;

Functioning with peers;

adherence to treatment;

school attendance

peer relationships

response to procedures

The thing about having a family member with a disability is that in order for this member to get better and advance each day, the family needs to be mentally stable and ready.

Each individual has to be prepared for everything he/she will face. I hope that this book helps you be ready to adjust in order to function. Remember that most, if not all, of people with a disability sense your fear and stress; they know you are scared and that might be intimidating and cause a sense of guilt in some cases. Let this member know that you are stable, functioning and ready to fight with him/her. Write it down.

Today I am

, stable

and functioning

to fight this with you. ready

35

• My Log •

As a family, to be most effective the “interventions generally need to be focused on specific target problems that are interfering with the member’s function in specific settings” (Kazak, 2000).

Activity Think about the ones you and your families face. List them: Fill out the empty lines below.

It is very important to seek help and therapy for those members with disabilities. Pless and Nolan’s (1991) review concluded “that children with chronic health conditions were twice as likely to demonstrate psychosocial maladjustment compared with physically healthy children”. There are studies that have consistently indicated that there is a higher risk for mental health disorders for those with chronic health conditions. These results all show the risk these people have in developing extra conditions that could be evaded. With interventions, the negative impact of their psychosocial adjustment could be reduced.

Painful process may equal to distress.

This pain will be mental for the family members, but physical for the member with the condition. Consider our case, there is nothing more stress full to me, than watching my brother go through a million yearly exams, procedures, treatments and taking countless daily pills. Then its even angering realizing all of the side effects the pills have on him; not mentioning the horrible process he goes through every time there is a change in the doses or in the pill itself. For example, he was taking a specific pill for his epilepsy, which was very necessary. My mother knew about the side effects but decided that no epilepsy was better than the side effects he could have. The epilepsy decreased, but all of his hair fell out and he gained 70 lbs in one year. The weight he gained ended up being a problem because it started affecting his back problems and his movement in general. He is now starting a 6 week process of changing the pill to a new one. I can go on and on with this, but I would never end.

36

• Emotional intervention •

It is devastating and stressful for the family members to see that every procedure done for his/her benefit is affecting him/her negatively in some way, now imagine how it is for them.

“Pain and psychological distress associated with medical procedures increase children’s suffering and disrupt children’s functioning in the health care context” (Palermo, 2000).

This is why, “they are important targets of psychological intervention for a range of chronic conditions” (Kuppenheimer & Brown, 2002; Powers, 1999). Believe it or not, the amount of anxiety this member may be experiencing can interfere with the treatments and therapies.

Most of them though are given antidepressants to help them deal with everything, then again it is one more pill and one more pill he/she is dependent of.

There are other types of interventions which might be very helpful to some people. In my brother’s case, he has a physical therapist who is in charge of taking him to the gym, to play basketball, to play football, to swim in the pool or to do anything that he loves to do.

This works because he gets to work out, do what makes him happy, socialize with other kids and distracts him to manage his feelings. This way he is more able to cope with the long exhausting hours of therapy that await him every single day.

Activity Think about what activities this member of your family enjoys, think about the ones you enjoy and think about some that perhaps you both enjoy. Draw the ones you both have in common below and I encourage you to go ahead and do them! Go have fun!

37

• My Log •

Organization & management is key.

You might be wondering where I might be going with this, bare with me. Optimal management of the medications this member might take is vital. If requested by the person, there should be a sense of trust by letting him/her take the medicines on his/her own. This is depending on the case of course; for example my brother is not able to do it himself, so he has a person who takes care of him and has every medication organized to his schedule. But, there should always be a family member who is being observant enough to find if he/she is taking the medicines accordingly.

Messing up medications, not taking them or taking too many of them can be lethal. Be cautious and alert that everything is going as supposed. It is all about adjustment at the end. Some medications could also not adhere correctly and might cause the person to have some potential effects on their health and symptoms. Those can turn into clinically significant, so keep a watchful eye.

Social issues & peers.

This is huge. Bullying and rejection, among many other things, are typical things people with disability and their families fear. For this reason, “physiological interventions may be very useful” and needed at times “to enhance the children’s social skills and peer relationship” (Dennis Drotar). Dealing with school can be a total headache. These kids might experience problems in school-related functioning because of school absences (hospitalizations, medical appointments, side effects) as well as learning difficulties. Most of the time, these kids are embarrassed to accept their difficulties and end up in stressful situations. Most of them, if not all, may “require accommodations in their curricula and academic programs” (Dennis Drotar) and that could lead to bullying from others eventually.

There are other cases in which kids struggle terribly in school and their parents give them a really hard time. Parents often think that their kids are being lazy, irresponsible or just distracted in class. What should be done instead, from their part, is testing for any specific issue that could be causing that kid to have a difficult time in school. Issues such as those could eventually lead to worse ones and a great deal of emotional distress. Again, talk about the issues you see, feel or experience. Nothing should be left unsaid.

Globally, there is still an issue about inclusion in schools. I am from Panama City, Panama and from my experience I can count with one hand the amount of schools who are willing to adapt to a kid with countless disabilities, like my brother has. We are so advanced in so many aspects nowadays, but so behind in including every single person into schools and society in general. It is our task to open peoples’ minds and make them understand that they might not have any disability in that specific moment, but that they won’t leave this

38

• Emotional intervention •

world without having at least one. Disabilities come inevitably with age, no one escapes that. We have to be accepting of everyone and make the lives of those who have it a bit more difficult than us, a lot more simple.

Activity Complete the following paragraph in your own words. Fill out the empty lines below.

I wish that people would be a lot more when they see or interact with someone with a type of disability. It would really make me feel that .

I with to tell (name) that he/she should really . I wish that I would spend more time with him/her by doing from time to time to help us . I wish that when people are around my (family member) they would behave accordingly and .

Finally I wish that (family member) could get to and like any other person his age would. My biggest fear is

and I will overcome this for (who) because and I will do it by

.

39

• My Log •

40

Chapter Four

Impact of disabilities A set of extra demands.

Every single disability places "extra demands or challenges on the family system, most of which last for a long time" (Murphy 1982). The challenges your family will encounter depend on many things that can vary across the disability and the kind of family you all are. The care and assistance that these disabilities need, leads to exhaustion and fatigue, pressing on the physical and emotional energy of the families.

Disability type.

We have to be aware that disabilities "vary along several dimensions, including the degree and type of incapacitation (sensory, motor, cognitive); the degree of visibility of the disability; whether the course of the condition is constant, relapsing, or progressive; the prognosis or life expectancy of the person; the amount of pain or other symptoms experienced; and the amount of care or treatment required" (IODOF).

In our case, my brother's disability is noticeable, so there is no doubt that he has some sort of condition. When he has tantrums, people don't ask or don't act as shocked because they use common sense and 'understand' what's going on. People seem to feel for us when they are around and do anything they can to help. For example, they let us skip lines at airports because they know that he doesn't understand what a waiting process is.

In many cases though, it is not noticeable at all and people with disabilities might even find others judging them by saying that they are not saying the truth or so. People with bipolar disorder, schizophrenia, diabetes, dementia, etc are highly medicated most of the time and will go unnoticed. These people have a harder time dealing with others coping to their conditions, many people don't believe that these conditions exist. In most cases, these conditions won't develop immediately after they are born and parents have a really hard time differentiating them from normal behaviors people their age might have. They might be confused with negative temperament instead of a condition.

41

• My Log •

When the condition is progressive (such as dementia and Alzheimer's) "the symptomatic person may become increasingly less functional" (IODOF) and the family will be faced with extreme caretaking obligations and put in very uncomfortable situations. These families need to readjust continuously to the increasing worry and stress. When the condition has a relapsing course (such as epilepsy or cancer), the family must be able to adapt quickly to any sudden change when the conditions flares up. "They must be able to move from a normalcy to crisis alert rapidly" (IODOF). Disabilities with a constant course (such as spinal cord injury), require perseverance, energy, planning and organization from the family for a long time.

In our case, my brother suffers from cognitive disorder, developmental delay, epilepsy and seizures (among many other things). This means that we experience relapsing and constant conditions. It is hard to manage, specially when we decide to travel. Years ago, we were with our entire family in Los Angeles for leisure. One day his epilepsy got out of control, we found ourselves in a strange place with no hospitals nearby. We called 911, which arrived immediately, taking us to the nearest hospital. All the plans were cancelled suddenly and our family trip ended. Our health care didn't cover anything, he had to go through a million exams, we had to extend the trip and cancel the plans we had. The worst part is that, nothing was solved, he was simply stabilized and this was just another day for us. Add all of that to a kid whose mental ability is limited and doesn't understand much and grows anxious fairly quickly.

We also have to take in consideration the type of impairment, there is always "a variability in the severity. The degree to which a person with a disability is limited in doing activities or functions of daily living can be assessed and is called the functional status". The lower the person's functional status, the more assistance he/she will need from other people/ devices (Biegel, Sales and Schulz 1991).

Activity Tell me about your family member's condition. Fill out the blanks below.

My (who) has a In our case (write about it)

42

condition.

• Impact of disabilities •

Age of the person with the disability.

I don't know if you have thought about the age factor, but it is very important let me tell you, this is associated with different impacts on the family's course. When the condition is present from birth, "the child's life and identity are shaped around the disability" and it is, in my opinion, easier for family members to get adjusted and to learn to live with the changes. People adapt. When a disability occurs in a person's earliest time, a lot more adjustments have to be made for longer periods of time.

The age of the parents is also crucial and in these cases extremes are very bad; this is an important consideration in how they respond. When you find teenage parents, "they are at greater risk of experiencing poor adaptation because their own developmental needs are still prominent, and they are less likely to have the maturity and resources to cope with the added demands of the child" (IODOF). This is also true for older parents. First of all, they have a higher risk of having a child with disabilities, such as Down Syndrome and they might find it really difficult to keep up with the extra high demand and experience lack of stamina. When disabilities occur to adults in their middle years, "it is often associated with major disruption to career and family roles. These roles are affected for the person with the disability as well as for the other family members who have come to depend on him/ her to fulfill those roles" (IODOF). The family will face many changes and in most cases, a loss in income as well as "child rearing responsibilities" which may be altered significantly if he/she is a parent. The most frustrating part for a person in this situation would be to "be treated like another child, the sexual relationship may change, plans for having more children may be abandoned, lifestyle and leisure may be altered" (IODOF). When thinking about old people who suddenly gain a condition, "bodily functions are expected to deteriorate" and people often fall in depression.

Impact on family.

When family members realize that a member of the family has a disability, "they begin a process of grieving for the loss of the expected child, learning to understand the realities of the child's current and future needs, and adapting their daily lives and family roles to an entirely new reality" (Vivian J. Carlson). The family members will have no option other than learning to cope with their own emotions and beliefs, while trying to maintain the family together. Some people will not react the same way as others. People in general avoid change because at times it can be scary and uncomfortable. In cases like these, there is no option and change will occur drastically from one second to the other.

As a sibling, it was always really hard and it is still hard at times. In my experience, it was harder as a single child. I was used to having all the attention I wanted and from one day to the other it all changed. You may find yourself asking yourself many questions that

43

• My Log •

you won't find answers to and might find yourself acting up at times you would've never.

Unfortunately, my teenage years were very tough on me, it was hard for me to find a connection to my brother; I created a barrier because I was scared, tired and my constant deepest dream that some day he would be 'cured' and it would all be over. It took me a while to cope with it and to appreciate him entirely. Time heals, seriously. Now, I look at him with different eyes, eyes of pride and happiness. I feel that we are the luckiest ones to have him and that we are extremely blessed. By the way, these feelings I felt were completely normal. Learn to talk about them, don't keep them to yourself.

Impact on the extended family.

These situations are also hard for everyone else around you. "The intensity of emotions aroused by the discovery that a family member has a disability can be overwhelming for extended family members as well" (Vivian J. Carlson). This is true specially with older generations who "may believe that they are personally responsible for passing on 'defective' genes" (Vivian J. Carlson) and who don't believe in therapy whatsoever.

In the (recent) past, families didn't feel that they needed to cope with family members with disabilities and they simply hid them and placed them in institutions. They had a different mind-set that it was shameful and never-to-be-spoken-of, basically kept secret.

So, growing with that way of thinking, it is hard for them to cope with perhaps having a grandson/daughter with a disability. They don't get it, they often say they never will and they are scared of things they never had to deal with. The most important thing for us to do with them, is talk. "Simply opening up the discussion and beginning to communicate about these ideas is a very important step toward mutually rewarding family roles and interactions" (Vivian J. Carlson). We have to help them understand that it is ok if they don't share their ways of understanding disability, but that they can find ways to establish a positive relationship with this person.

Financial burden your family will encounter.

Day by day, life is getting more expensive, insurance covers less and people want to live with more. When a disability arises in the family, once of the biggest concerns is obviously money. Families may think that they can rely on service programs, but the sad truth is that there is a lack of coordination and many flaws in implementation. This specially occurs in third world countries. Heath care expenses are a huge problem; medication, therapy, exams, doctors and surgeries are extremely expensive and when the families are not in a wealthy economic standpoint, many things might get heated. The biggest concern is that many of these people with disabilities need all of the previous mentioned to survive and progress. The inability to live comfortably might lead to separation of families, stress and even depression.

44

• Impact of disabilities •

Activity Simplifying your emotions. Complete the following and fill out the blanks below.

When I tend to feel Now, think of three people who have been critical to your family member with the disability. You can include yourself. Write their name first and then write what each person did wrong or could have done better and why. : you (I) shouldn't have said/done

: you (I) shouldn't have said/done

: you (I) shouldn't have said/done

Talking about it with others.

It's hard, trust me, I know. There is no manual that works perfectly in telling how to start talking about it with other people because it all depends on who you are as a person. It might surprise you, you could be someone who loves to share your feelings and might feel intimidated about sharing this experience in particular; you might be a shy person who is not used to talking about your feelings, but you might find yourself in need of sharing this.

It is different for every person, but it is never easy.

Activity Choose one person who you have never been able to talk to about this and tell him/her everything. Get ready to write a bit. Fill out the lines below.

45

• My Log •

46

• Impact of disabilities •

Living independently.

Some families might think is crazy and totally out of reach, but for many people with disabilities it is a dream and "often times prize the ability to live independently" (Wendy Taormina-Weiss). They are people, just like you and I; they want as much independence and freedom as we do, so this is a very delicate situation. In many cases, families fear for the life of the person with the disability. Living alone and facing all the responsibilities that come with it might be too much for this person. This person might need some form of assistance, reminder or supervising of his/her medication and help with daily chores as well as financially. Parents might also find that they can't let go of this person because they are very attached and controlling. Every single condition and situation is different, but if this person has the ability to have some sort of freedom or independence then they should have it.

Some solutions you might find would be using technology to 'keep in touch' easily, getting an apartment or home close to yours and adding cameras to their place because it could be a visual and auditory constant contact.

Living with the family members.

I think that this is the most common go-to option for families; this lets them be relaxed and control the situation a lot better; others end up with this option due to financial reasons.

For the family member with a disability "financial hard times may lead to feelings of, 'not contributing,' to the level needed or other emotional difficulties on top of the disability the person already experiences" (Wendy Taormina-Weiss).

With this come issues of sharing a space together with this person who, in some cases, need attention all the time. It is all about team work, the entire family has to be able to help in some way or another. "Family members who experience forms of disabilities contribute to the best of their abilities, just as the non-disabled family members do" (Wendy Taormina-Weiss).

In other cases, there are families who experience having to send the family member with the disability to an institution or facility because of complications and other families who have them in an institution but "may find themselves wanting to make potentially unwise decisions based upon economic needs" (Wendy Taormina-Weiss). Both cases are difficult and require a lot of thinking and decision making. Be aware that you might feel guilty of any decision you take and you may feel that you are picking the wrong one. Don't, you are probably doing what's best for him/her, the entire family and you.

47

• My Log •

48

Chapter Five

Coping with loss I believe that this is a very important topic to touch upon. No, I am not being negative or pessimistic, I am being realistic. It is scary to talk about this topic, but often necessary to understand it. Not one person will leave this world alive, this is one of the things that we are all scared of but cant do anything about. When these things happen we might feel lost, empty or scared. Remember, “don’t confuse knowing something with understanding something” (Patrick J. Mogan). If you are not being able to fully realize that this person has passed away, you must seek help. Being realistic is very important. Some people are not here to live for so many years, they come to teach us lessons, make us better people and love unconditionally.

According to the World Health Organization (WHO), “71 years was the average life expectancy at birth of the global population in 2013”. The Catholic University of Applied Sciences North Rhine, Germany, they conducted a research about the life expectancy of people with intellectual disabilities in Germany. Using WHO’s data that found that 70 years was the average life expectancy in Germany they found that by “comparing the results with other international studies, people with intellectual disabilities still have a lower average life expectancy than the general population, due to subgroups with low life expectancies”.

We all have to be aware that people with disabilities are the world’s largest minority, so although 1 billion people live with some kind of disability (from mild to severe), a much larger number of the population has some connection to those with disabilities. As I’ve said before, while coping with grief, loss or issues, in order for us to help these people we must to help and take care ourselves first. You must be realistic and know that although you might think that you are "ok", getting professional help will always help.

49

• My Log •

Activity So, here’s how I’ll help you get started. I’ll give you five tips on how to cope with grief and loss while taking care of yourself. If you are not facing a loss currently, for a second imagine that you were and use this as an advantage to understand what it would be like to take care of yourself in this process. Complete each of the five tips below. Consider the instructions given and express how you feel.

When you face a loss you can try to minimize your grief, but you can’t shy it off forever. “In order to heal, you have to acknowledge the pain. Trying to avoid feelings of sadness and loss only prolongs the grieving process. Unresolved grief can also lead to complications such as depression, anxiety, substance abuse, and health problems” (helpguide.org).

1. Face your feelings. Write down your fears, thoughts, conserns and emotions.

50

• Coping with loss •

If you already have a journal, use it to write the things that you never got to say to this person. If you don’t, use this page. Draw what you loved to do together, write him/her a letter, place a picture, do whatever and celebrate this person’s life.

2. Express your feelings in a tangible or creative way. Use the entire page and be creative.

51

• My Log •

Always remember that “the mind, body and spirit are all connected; they are not separate pieces.” (Judith Light). When you feel good physically, you will feel better emotionally.

Overcome all the stress and fatigue you have pent up by getting a good night's sleep, eating right, and exercising every day. Using alcohol or drugs to numb the pain is not ideal because it will only be a temporary feeling that won’t help you in the long run.

3. Be aware of your physical health. Fill out the following chart. If this chart worked out for you, make copies of it for weekly use.

MONDAY

TUESDAY

WEDNESDAY

yes / no

yes / no

yes / no

yes / no

yes / no

yes / no

Breakfast

Lunch

Dinner

Exercise (if yes, what kind)

Therapy

Personal notes

52

• Coping with loss •

THURSDAY

FRIDAY

SATURDAY

SUNDAY

yes / no

yes / no

yes / no

yes / no

yes / no

yes / no

yes / no

yes / no

53

• My Log •

This moment is yours and no one has the power of truly knowing or understanding how you feel, because everyone experiences things in a different way. So, don't let others tell you that it’s time to “get over it" or “move on”. Let yourself feel whatever you want to feel without being embarrassed. Grieving is a process that takes time. It’s okay to be angry, confused, pissed off and to cry. It’s also okay to be yourself, have a good time, laugh, to find moments of joy, and to let go whenever you feel ready. Remember that you never have to blame yourself for feeling happy after you've lost someone, eventually everyone must move on to the next chapter of their lives. It part of the cycle of life.

4. Don't let other's opinions about how you feel get to you. Draw out the facial expressions to show your emotions and write why you've felt like that.

If you need ideas, choose from these: Eyes: Mouth:

54

• Coping with loss •

Be aware of "anniversaries, holidays, and milestones can reawaken memories and feelings". Be mentally prepared for an emotional kick, and please know that it’s totally ok and normal. Talk to them you loved ones ahead of time about this and do things to honor the person you loved.

5. Plan ahead for anniversaries and specific dates. Write down those dates here.

Name

Day

Month

Year

Get the support you deserve.

The most important factor in a healing process from loss is having the support of your loved ones, family and friends. Although it will be extremely hard to let go of what you feel, it is very important to communicate with others, even if you aren't comfortable talking about your feelings in normal circumstances. Believe it or not doing this will make this feeling of loss easier to carry. However you do it, don't do it alone. Connecting to others will help you heal.

Again, I propose you to write, write and write. If you are one of those people who don't believe in the power of therapy, then write. Get a notebook after you finish this book and write everything you need, everything you've learned and everything you are afraid of saying something out loud or to someone other than yourself.

55

• My Log •

Five stages of grief.

Denial, anger, bargaining, depression and acceptance.

Contrary to common belief, you don't have to go through every single stage in order to heal. "In fact, some people resolve their grief without going through any of these stages.

And if you do go through these stages of grief, you probably won’t experience them in a neat, sequential order, so don’t worry about what you “should” be feeling or which stage you’re supposed to be in" (helpguide.org).

Common symptoms.

I am mentioning this towards the end of the chapter because I didn't want you to get caught up on those feelings that you are already aware of. For those who aren't going through this, here is the breakdown of common symptoms people go through during grief.

Loss will affect people in totally different ways, but most people might experience the following. Every single one of these symptoms is normal.

Shock and disbelief – "Right after a loss, it can be hard to accept what happened. You may feel numb, have trouble believing that the loss really happened, or even deny the truth. If someone you love has died, you may keep expecting him or her to show up, even though you know he/she is gone".

Sadness – "Profound sadness is probably the most universally experienced symptom of grief. You may have feelings of emptiness, despair, yearning, or deep loneliness. You may also cry a lot or feel emotionally unstable".

Guilt – "You may regret or feel guilty about things you did or didn’t say or do. You may also feel guilty about certain feelings (e.g. feeling relieved when the person died after a long, difficult illness). After a death, you may even feel guilty for not doing something to prevent the death, even if there was nothing more you could have done".

Anger – "Even if the loss was nobody’s fault, you may feel angry and resentful. If you lost a loved one, you may be angry with yourself, God, the doctors, or even the person who died for abandoning you. You may feel the need to blame someone for the injustice that was done to you".

Fear – "A significant loss can trigger a host of worries and fears. You may feel anxious, helpless, or insecure and even have panic attacks. The death of a loved one can trigger fears of facing life without that person or the responsibilities you now face alone".

56

• Coping with loss •

Physical symptoms – "We often think of grief as a strictly emotional process, but grief often involves physical problems, including fatigue, nausea, lowered immunity, weight loss or weight gain, aches and pains, and insomnia".

How to deal with those who are ready to pass.

In a TED talk by B.J. Miller, who lost one hand and both legs in an accident when he was 20 years old, he explains how after his accident his life took a shift. He studied medicine and his near-death experience lead him to study death in general. In this talk he shows really valuable life lessons. "Using empathy and a clear-eyed view of mortality, BJ Miller shines a light on healthcare’s most ignored facet: preparing for death" (TED).

In the talk, Miller explains that what's most important for people who are "closer to death" is "the feeling of comfort; feeling unburdened and unburdening to those they love; existential peace; and a sense of wonderment and spirituality". These people's priorities change when they know they have limited time here near us. They forget about their "disability" or struggle and feel an urge to do everything they've always want. At times people would tell them that they are crazy or risking their lives, but at the end they are simply looking for "sensuous, aesthetic gratification, where in a moment, in an instant" they will be rewarded for just being and their wildest almost impossible dreams can become a reality.

He talks about one of the most simple interventions they use and this is to "bake cookies".

The smell and the senses awake those who are almost gone. Miller explains how we have to think about this person's "well-being so that life, health and healthcare can become about making life more wonderful rather than just less horrible". He asks, if "dying is a necessary part of life, what might we create with this fact?"

He asks us all to "make space; physical room, to allow life to play itself all the way out so that rather than just getting out of the way, aging and dying can become a process of crescendo through to the end". Mainly, he says this because we can't solve for death. He wants people to realize that "you can always find a shock of beauty or meaning in what life you have left".

He invites us to "live well, not in spite of death, but because of it".

Activity I am afraid of death yes / no because

.

People like Miller teach me to/that .

57

• My Log •

58

Chapter Six

This might bring you all together Situations like these might make or break relationships and families all together. This is why it is extremely important to act right when the problem starts and to help yourself before you help others. You must be completely open minded and ready to fight anything that comes up in your life and after everybody in the family does that, you will all be ready to act together as a whole. This is also why I put the other chapters before this one.

Loving yourself unconditionally and then others in your family is key and accepting what is happening is crucial. Emotional interventions are also part of the equation and must be done in a timely manner. Response to disability can be divided into three phases: crisis, chronic and terminal (Rolland 1994).

Successfully adapting.

This is the so called crisis phase. There is always an initial response families have to this sudden change a disability brings; it often is to "pull together and rally around the person affected and provide support to each other" (Steinglass et al. 1982) and the family members will most likely suspend their daily routines to really focus on the immediate issue they are dealing with. What usually happens is that they start meeting the best doctors, gathering information about the condition, getting educated and learning how to provide the best care possible.

The other factor that comes into play is the whole set of emotions that appear, including "grief over the loss of abilities; worry about the future and the costs; feeling guilt, blame, or responsibility; and trying to find a cause and a meaning for this event" (FRTD). What happens from here on out, entirely depends on the nature of the family and how it is structured. Some families avoid the emotional challenges altogether and simply focus on adapting; others might not react the same way and end up splitting up, leaving some members carrying all the responsibilities and others ignoring them.

59

• My Log •

There is an expectation that "family members should provide support to each other in times of crisis" (FRTD), but this is somehow unrealistic because every family lives in a different situation. This is a very vulnerable time for family members in every case and successfully adapting to change takes time.

Welcome to the chronic phase of living with a disability. Nothing gets easier, just making sure you know. This phase obviously depends on the length of the condition, but usually it is for the long run; it is particularly important because the family will understand "the course of the development of the person, the disability itself " (FRTD) and the evolution of the themselves as a family. The most challenging part for the families is often to find a midpoint between the disability-related needs and the needs of having a normal life as well. The disability will become the centerpiece around which every single thing is organized and it is difficult.

There is a tendency "for family members to hold back from discussing any strong negative feelings they may have about their situation. It is as though they have no right to feel angry or resentful since, after all, they are not the one with the disability" (FRTD). Be careful and don't left your family fall into this, it can become an emotional shutdown and can lead to a repression of feelings in the family. Talk about your feelings and never judge.

Going way back when my brother was born, I remember that we lived in an apartment building with three rooms. I had the second largest one, it was huge for a four year old, but it was mine and I loved it. My brother had the smaller room, which had a regular size.

When all the therapies started, we had to adapt the entire house. The first thing was that we had to switch rooms so that all of his therapy equipment fit. Believe it or not, it was a shock and at the time I didn't understand why my parents were taking away a space that belong to me. I was only four years old. I remember not understanding why they traveled so much and then I remember that they started taking me with them to the "trips", which were visits to doctors. Eventually we had to put rugs in the house because he couldn't walk until he was four years old, he crawled. I had a dog and we had to give him away because he constantly had ticks which got in the rug every time. These were little things that you might find to be minimal, but to a four year old they were huge.

My brother's disability has become ours and it is the centerpiece around which all the activities are organized. It is still frustrating at times, but it is part of us. One day I will start my own family and sort of move on from that situation because I won't be living it everyday. It breaks my heart that I won't be there to give my parents support or company.

We have adapted to everything. Our house is adapted to him, the trips we take are adapted for him, the food we eat and the restaurants we go to at times are adapted to

60

• This might bring you all together •

him, our everyday lives are adapted to him. The easiest way to explain it is by saying that he is and will always be a baby in the body of a man. He needs our complete attention and care to keep going, he is not fully independent and will never be; but everything we do everyday, we do it will unconditional love and support.

I regret everyday not talking to my parents about what bothered me back then, I regret now putting one hundred perfect effort in my therapy sessions and mostly I regret being distant and scared about the whole situation all together.

Activity I told my part, now tell me yours. Fill out the empty lines below.

What has always bothered me has been

Everyday I regret

I wish I would of

I will change all of that by

This will make me feel better because

61

• My Log •

There are many positive ways in which families can adapt to disabilities. As I have been mentioning, it is crucial that each member is mentally stable and ready to adapt and help this member in need. These patterns of families who have adapted accordingly are associated with those who have sought help first. "This approach emphasizes resilience, or the ability of families to discover resources and overcome challenges" (FRTD).

There are nine aspects of "resilient family processes" which have been described "based on the findings from numerous studies of successful family coping with disabilities (Patterson 1991). I'll keep the explanations short, I promise.

Activity Complete the nine aspects with what you think is missing or with examples of how you and your family make them work. Fill out the empty lines below.

Balancing the condition with other family needs – There is a tendency to let the disability dominate daily life, try hard and don't let this happen. Plan for your other family needs as well as for those associated with the condition. Try to maintain your normal routines and identity, don't let this condition define you or your family.

Maintaining clear family boundaries – It is extremely important that you and your family keep a sense of integrity and control over your lives. Yes, professionals will give you their opinions and ideas of how you should be doing everything, but don't allow yourself to be over directed by them. Never stop trusting your gut. It's important for parents to work together and set the standards, this way the rest of the family will know what to do.

Developing communication competence – When disabilities are present, there are a lot of decisions to be made and problems to be solved (FRTD); in these cases these families automatically learn how to work through everything effectively. There are a lot of feelings that come with the situation and families should have the chance to express their feelings openly and honestly without being judged.

62

• This might bring you all together •

Attributing positive meanings to the situation – You should always stay positive about the entire situation. This will help you and your family develop a positive attitude, be open and manage everything better. Always think about how this will turn you into a better person.

Maintaining family flexibility – From day one, understand that change is part of you since disabilities, most of the time, are not predictable. You have to be able to try new things, accommodate and move around the needs of this person. Forget your daily agenda.

Maintaining a commitment to the family unit – Families who cooperate and support each other in their daily efforts of working with the disability, have proven to be the most important factor in the well-functioning families. There is always a sense of teamwork.

Engaging in active coping efforts – Being passive is not an option for me and it shouldn't be for you either. Families who work actively in solving their problems and expressing their feelings have better adaptation into a "normal life".

Maintaining social integrations – You can't step out of your circle of friends, keeping these relationships and sense of community is very important. It is an informal support that you might find you need. Don't be scared in talking to your friends about the condition and including them.

Developing relationships with professionals – Finding the ideal professionals is a must.

You will be working countless hours with these people, so having a connection to them is important. Sooner rather than later, you will all become a team, which should be a strong one. You should value the time together, work together in the decision making of different situations, respect the differences, have an open mind and avoid controlling others.

63

• My Log •

64

Chapter Seven

Bottom line Today you should feel very proud of yourself; you took your time to let go of feelings you probably didn't even know you had and you learned about yourself.

This book is not about healing, but about acceptance and comprehension. Healing comes with time and it is a life long process. I am not expecting you to be ready to conquer the world tomorrow, but rather to feel better and different. Use writing as a therapeutical tool.

I am no psychologist and no doctor, I am simply a Graphic Designer who has a sibling with a disability. I wrote this book from my life experience and knowledge of everything I've been educated on since the day Roberto was born. Being a good listener and curious does have its perks.

I spent my life wanting to tell my story and wanting to write about it for several reasons.

The first reason is because I consider my family's story a success story, not because we found a solution or cure to my brother's disability, but because we've been through hell and back trying to help him be as successful as possible and he has; we have done the impossible with all our hearts and have maintained united as the family we are. It has been scary and bothersome at times, but amazingly fulfilling when we have seen him overcome his challenges every day.

The second reason is that although it is not easy to talk about such personal things, 'sharing is caring' and I really want other families to understand that they are not alone; sometimes you feel that no one understands you, but the reality is that many of us probably do. My goal is for people to open up and talk about disabilities, it will make you feel much better, trust me. Remember that you should never feel ashamed of yourself or your family, you only get one.

The third reason is because writing is the most therapeutical practice I know after art, of course; it is an art in itself; this is the reason why I wrote it. Having the opportunity to using my creativity to design my own book felt really good. Many people feel that they have a writer's block or that they don't know how or what to write about. You can write

65

• My Log •

about anything, start with your thoughts. The good thing about writing is that no one has to see it; it can be so private and personal that you can spill out your darkest secrets.

Writing this book taught me more about myself, my family and my brother than I have ever learned in my entire life. I discovered new feelings and went back to those I had forgotten about. I feel a lot more peaceful, at ease and even feel more comprehensive. After so many years in therapy, I thought that I had reached a point were I was ok with my family's situation and thought that I felt as good as I would about it. So, I wanted to reach to others and help as many people as I could and I ended up helping myself, so I thank you because thanks to people like you, I am a happier person.

While writing it I tackled things I thought impossible. I started reading psychology books and anything that had to do with disabilities and I have to be honest, I am not a reader.

I decided that I wanted to go to my home country and talk to as many people possible, so for an entire week I met with countless professionals and parents who are considered experts in this field. I also reached out to many people to ask for their testimonies, which you will be reading shortly, a really delicate thing to ask for. The general response was great, they all thought I would be filling up an empty space and that this book would be very useful. I am happy to mention that no one rejected my offer to participate. This book helped me connect and meet a ton of people.

Repeat this process of writing and letting go of your feelings throughout your life. You will find that your way of thinking, your worries and your thoughts will be vary according to the stage of your life you are at. By repeating it every now and then, you will find new things about yourself and carry on with your life. It is important that you never keep things to yourself and always seek help.

Bottom line, as Jim Abbott said, "It's not the disability that defines you; it's how you deal with the challenges the disability presents with you". Understand that it's not about the things this person with a disability can't do, it about the ones he/she can. Exploit those.

These people with special needs are put in this world to bring peace and give a lot of love, so it is your turn to give back a lot more.

66

• Bottom line •

Activity What you learned with this book. Fill out the empty lines below.

Now I know that a disability is

After completing the activities and reading the book, I learned that

I no longer feel because

of

I feel happy because

I will contribute to the disabled community by

I wish I would

From now on I will

67

• My Log •

Testimonies

Isabella Eisenmann | sister I was four years old when he was born. My parents named him Ithiel Roberto IV, a name that has been in my family for generations. He was born just like any other kid, everything was perfect at first. When he was two months old, my grandmother from my mom’s side expressed a feeling of worry. She told my mom that she felt that something was off with Roberto; he wasn’t doing the typical things babies do at first and his head was really big.

My parents took him to a doctor who told them that nothing was wrong. My grandmother insisted though and my parents took him to a neurologist. That was the start of a really hard and long journey through my brothers life and ours as well.

We have visited countless professionals in countless part of the world and it turns out that his condition is so rare that there is no name for it. Added stress and wonder huh? What we do know, however, is that he has a developmental delay, troubles with fine motor skills, troubles with speech, cognitive disorder and to top it off he suffers from epilepsy and seizures. All of these among many other things of course.

Growing up was not easy. I spent most of the time in psychologists after school playing games and drawing, or else I thought. After a few years it became a lot more about how I felt towards this life situation, which became very repetitive and annoying. I was in a rebellious state of negation and sort of stopped believing in therapy. I grew distant, jealous at times and also felt a little empty. I had this feeling that my mom didn’t pay attention to me and I really hoped for attention. Eventually I started getting it, but not for the right reasons because we started arguing about everything. It took me a few years to realize that it was time to go back to therapy, it was my only hope and I did. This time I was open because I went voluntarily. I soaked up every single thing that my therapist said.

We went way back in time (to my grandmothers times to be exact) which, made me realize what made her the way she is and what made my mom the way she is; both with huge

68

hearts but really strong characters. My last day of therapy was the day my therapist told me that I was finally ready to move on. It felt great but my situation back home was the same one.

Four years ago, I left Panama to go to college in Boston, MA. This experience was life changing to me because for the first time I was on my own and without the daily struggle I had back home. I have to be honest, at first it was a huge relief because I felt that I had finally some time for myself. It took me a few weeks to realize how much I missed my family, but specially my brother. I was being very selfish before because my entire life had always been about him and I couldn’t help it. But it was at that moment in time when I realized that my life would of never been the same without my brother’s condition and that I wouldn’t trade it for anything. His condition made us who we are as a family and has united my parents in ways that are unimaginable.

Being away from my mom for a while was the best thing that could’ve happened to us, because it was right there and then when she left Boston the first time that I realized how much she loved me and how much I loved her. With every day that passed we argued less, relationship became stronger and we started being friends; our communication grew immensely. Time does heal. My relationship with my dad, on the other hand, was always great but it became a lot better as he saw us getting along.

In Boston I met the love of my life and as I was getting to know him and vice versa, my biggest fear was what he would think about my brother. I was scared of him making fun of him, being mean or simply running away from me because of fear. Before meeting him for the first time, I explained to Marcos what he had to expect and I sort of prepared him. I fell for Marcos deeply when I saw him around my brother happily and free of judgement. It meant the world for me and I’m sure that it did to my parents as well.

With time, I have learned to be kind, to be patient, to love unconditionally and to learn that there is no one that fights harder, works incessantly, fears nothing and loves more deeply than my brother Roberto. His innocence and essence are the core of who we are as a family and I thank every day for it. I love you all and miss you every single day.

69

• My Log •

Patricia Eisenmann | mother Roberto has been an outstanding kid, who since the moment he was born has been a fighter and has overcome everything that has happened to him. He came to this world to work really hard and to overcome every single obstacle like gives him. It hasn’t come easy for him like it has been to any other “normal” kid has it growing up....he has had to work countless hours and extra days to make little things happen. Although them seem like little things, to us those things mean the world. He has lived his entire life in between therapy, medical examinations, doctors, drugs, opinions, radical opinions, therapists and everything else we have been able to offer him as parents to see him succeed and be the best he can. This is the life that was put into his path and the life we got too. We could be asking ourselves every day, why this? Why us?, But we don’t. We accept him just the way he is and the challenge God gave us; and we do out very best to help him be the best he can be and be as happy as he can be by our side.

Since the very beginning, when we found out that something was off, we did everything possible. We found the best doctors out there, the best hospitals and the best exams in order to find what his problem was. We had countless different opinions and recommendations. One of them which lead us to The Institutes in Philadelphia. The Institutes became our second home, our place of support and guidance for Roberto’s first four years. This place really helped us into understanding all about brain damage and how to get out Roberto’s full potential. Since that moment on we made sure in offering him our unconditional support to get him to be who he is today. But none of this could have ever been possible without the unconditional love and support from my husband and daughter, some family members and the entire team of therapists that have been by our side all of these years.

I have gotten the hardest task of all as a mother. I have to manage him and his day-to-day life, my husband, my daughter and our home. Doing everything has been indescribably difficult, but everything I’ve done has been with all my love trying to always give each and every one of them their own time and space. Today, Roberto is an adolescent who has given us all the happiness in the world. He brings happiness to our home, he is the happiest he can be, he smiles back at life and is full of pure love. Every single day he demonstrates that impossible is nothing and that everything happens for a reason. Our hard work with him continues day by day and it will be like this forever.

70

• Testimonies •

I. Roberto Eisenmann III | father My son Roberto, is, in short, an improvement of my own self-version. If I were to be born again, I would like to have his tenacity, his lack of fear, his self-esteem, and his strength to overcome the immense number of challenges life posed on him.

I would like to thank him, for allowing me to open my eyes and see the need of a higher meaning and purpose in my life; the need of thinking of the most needy and helping them somehow to have a better life. I chose those with disabilities. That took me to make a life decision and create a Non-Profit Foundation, named “Lienzos de Vida”, Canvas of Life, to which I have decided to devote at least half of the rest of my life. I envision a campus-like development, to prepare people with disabilities of all sorts, for a more independent life, for being able to work in something that creates value and provides them with an income source; an environment that embraces them with dignity, caring, security, freedom, nature and serenity. A campus where they can be for an hour, a day, weeks, months or even make it their home.

I am also grateful to him, for allowing me to discover the extent of my wife’s non-limits, in as much as devoting her entire life to our children, whatever their need may be. I could not have found a more marvelous mother for my children.

71

• My Log •

Roberto M. Medina Guardia | affected At the age of 18, I was diagnosed with bipolar I disorder. I was a senior in high school ready to graduated and leave my country to study abroad. When I was diagnosed, I felt a slight feeling of gratification. I finally had a label to explain my uncontrollable burst of emotions and actions. Furthermore to provide identity, and me a sense of whom I was. Eventually, I had to deal with reality because I was no longer 18, but 12, I could no longer leave for college because I could no longer “survive” on my own. My life changed drastically to the point where I was no longer Roberto Medina, but Bipolar Disorder.

I was very young and very vulnerable to my surrounding. In addition, my brain, my chemistry, and my genetics had the ability overpower my will, and convert me into what I considered a week and vulnerable human being. According to the National Institute of Mental Health, Bipolar disorder is a brain disorder that causes unusual and extreme shifts in mood, energy, activity levels, and the ability to function within the acceptable norms.

The ups and downs are different from those faced every day by “normal” people. My ups are mania, which I can best describe as feeling immortal. You suddenly become the smartest, strongest, most powerful person in the room, and all others are insignificant.

Depression is the opposite; it’s becoming mortal. You feel as the world is going to collapse. You have no energy and no desire or will to live. The strange part is that all theses alterations are not due to every day events, but your brain convincing your conscious mind to perceive the world differently. When we are “imbalanced” we have no control over ourselves; we just are.

When my dear friend asked me to write this testimony I had no idea what to say. I am not yet a success story and I feel weird comparing myself to other diseases, but then I realized that the power to alter your emotional and cognitive state and the lack of power to control it is horrible. As I said, I am not yet a success story. I am functional, but I still have much to do to become Roberto Medina and not Bipolar disorder. This is a life long journey. My goal is not just to tell you about me or about the disease, but also to attempt to tell you what you as family member or friend can do for us. Looking back I would not be here with out my family or the brilliant author of this book. When helping people who cannot really help themselves you must not feel pity or indulge them. We are people and what we need is for you to push us to become the individuals you perceive we are.

One of my most important memories was in social situation. I was in the mist of panic attack, and looked over at Isabella and she understood. She took me aside, sat down with me and talked. She made me feel loved, safe, and helped me realize that all will be

72

• Testimonies •

okay. That this feeling of panic will pass. This is a memory I will carry on to the day I die. I needed to know that I was ok, and she did this showing me that she was here for me, and that I was more than a diagnosis.

Mental disorders have a lot of stigma attached to them, but they are not as clear-cut as the DSM-V or those random Google searches would like to say. We are normal, we have potential, but we sometimes have a hard time seeing it. As a relatives the worst thing you can do is to become complacent, and the best thing is to guide us to become more that just an illness. Let us feel your love, but also push us to love ourselves. Don’t investigate, read as little as you can, limit your bias, and work with your loved one on a daily basis.

Treat him as a person not as a patient.

No words can begin to describe the agony I put my family through, but no words can describe the love I feel for them now a days. My mom, my dad, my sister, the author, my other friends were my rocks, and I will forever love them for this. Us, “the crazy” are born with the amazing capacity to reach incredible cognitive and emotional states that other people use drugs like cocaine and marijuana to attempt to mimic. The difference is that those “states of mind” last more that just a couple of hours, they last weeks and sometimes even months. We live in state of hypersensitivity that if channeled correctly will lead to life of love, success, and strong emotional bonds.

I know it is very difficult and many times you will want to give up and cry; that's okay. But stand by us, be patient, we will get better, but we need you to support and push us across the boundaries we find impossible to overcome. It is very important to know that this is life long journey. We will fall, we will get depressed or manic, we will feel different, and we will isolate ourselves. Regardless we must always get back up and live to fight another day, to fight our tendencies and meet our true purpose and goal, which is not to become a lifelong psychiatric patient.

With these short words, my hope is to open someone’s eyes and clarify some small details.

My story is not limited to my disease, but to all. To an extent we all feel trapped and we all need someone to extend a hand, so we can escape that trap we are in. Whether that trap is our mind or our bodies is unimportant, as we are still prisoners to circumstance.

To finish I would like to say something that took me a long time to understand. I suffer from bipolar I disorder, but I am not and never will be bipolar I disorder. Words have more power than we can begin to understand. My love and best wishes to all readers.

73

• My Log •

Priscilla de Porcell | mother “Our world fell apart, we fell but we were able to stand up again” that is the common phrase a parent with a special needs child uses to refer to his or her experience. Facing the disability of a child is a situation that no one would wish to live; however, it is the reality of many Panamanian families. Parents with special needs children share their story and experience in order to serve as a guide to those who are facing or will face the tough reality of having a child with a disability.

Upon meeting Valeria Porcell, commonly referred to as “Valy”, her physical disability was nowhere to be seen. Her face radiates constant happiness, her sweetness and strength envelope you. Valy is a 12 year old girl who suffers from spastic diplegia, a motor-related paralysis. “During pregnancy [she] didn’t receive enough oxygen and it affected the frontal part of her brain that manages lower extremities” her dad Ricardo mentions. “Due to this, she is limited from the waist down, she writes and paints perfectly, she has a tough time modulating, but she is getting better and it’s not affecting her mental capacity.”

The most important part, as told by the Porcell family, is to never “look for someone guilty” upon discovery of a mental or physical disability of your child; it’s not worth the time.

The first step is to focus on your child and look for what’s best for him or her. When Valy turned one year old and hadn’t showed motor disabilities, the family flew to the Miami Children’s Hospital because answers in Panama were nowhere to be found. After numerous tests, she was diagnosed with a disability. “When the doctors told us, it was a shock for us, especially because they didn’t have high hopes for her future.” In Panama, doctors recommended an abductor surgery, which the parents easily accepted, but unfortunately has halted her recovery. Due to that experience, it is recommended to always get a second opinion and not always trust in just one diagnostic. When a close friend gave Valy’s parents the phone number of a doctor in Venezuela, they, without a doubt, reached out to him. At just six years of age, Valy was operated in Caracas, utilizing a complicated procedure known as “shark attack”, which is 16 surgeries in one sitting, with a very difficult road to recovery. Thanks to that surgery and the daily therapies she is involved in, Valy is now an independent girl who walks with a certain difficulty, but with no help.

“In her 12 years of age, Valy has barely complained and has never missed a therapy session” recounts her mom Patricia. “Valy is a blessed girl. Since she was born, she was spoiled and love was always given to her. What you want to do is protect her and give her everything, without you knowing that you may be committing a mistake.” Looking back, Valy’s parents recommend that one is a bit stricter so children are more conscious, but also take into consideration their limitations and avoid their frustration.

74

• Testimonies •

Thanks to the two surgeries, the daily physical therapies and the unconditional support given to her by her family, Valeria has recovered tremendously and walks without support.

She is a poster child, who attends fifth grade, she loves technology, sports, specifically baseball and the Yankees, walking around and engaging in outdoor activities with Camila, her seven year old sister, who admires Valeria more than anyone else.

Her therapy will continue and she will have another surgery in 2013. No one truly knows when a doctor will be able to tell her “you’re cured”, but Valeria has come a long way in these seven years and she has a long road of perseverance and family support ahead of her. “One is never calm, you’re always worried” say her parents while they live every day providing the best life they can to her, without letting their guard down.

75

• My Log •

Vivian Torrijos | mother, activist, former first lady Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A blessing because it is difficult to experience you the depths of victory or the joy that flourish when your child overcoming some of those challenges. That are just overlooked by other parents.

Chances are that you know a special needs parent, or you may be one yourself. As the mother of Daniella, (22) I often share my feelings, even with unknowns. It’s healthy and resourceful. Let me share with you three feelings we all experience while accepting.

They are almost universal: You are physical and emotionally tired.

Parenting is already an exhausting endeavor. But parenting a special needs child takes things to unknown levels of fatigue. Even if you’ve gotten a good night's sleep, or have had some time off, or have someone that can help you at home, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Even though I have to admit that some how you always find the strength when needed.

You are constantly in a comparing mode.

We all wish our children to play, work, or just be and do the things their piers do. For some time it is difficult to accept that your child is just special and are able to develop other ways to be been happy, show their feelings or feel useful.

You are scared.

Worry of not doing enough. What if I missed a treatment or a diagnosis and that window of optimal time to treat it has passed? Can they be independent or less dependable? Can they learn more? Permanent wondering about their future, whether she will ever drive a car, or get married, or live by herself. Scared thinking of how they feel experiencing they are "different". You are scared about finances; the permanent question of, what will happen to my daughter if anything were to happen to us or to me? Who´s going to take care of her?

Raising a special needs child has changed my life. I was raised in a family that valued performance and the effort for perfection was a common strive. This made me judge others and myself through this narrow lens. Nothing changes more this perspective than giving birth to a sweet, innocent child with impairments. That has to make ordinary living and ordinary "performance" a permanent struggle to overcome adversity even in

76

• Testimonies •

life simple tasks. My daughter has helped me and my family understands that true love demands accepting other human beings as they are. There in no room for judgment nor space for useless comparisons, there is only how it is and how we are going to help to make the best out of our reality.

Raising a special needs child shatters all the "should be" that sometimes we idolize and some of use to build our lives around. A special child make you realized what really is the purpose of our life where love and understanding stand well above every thing else. This leads me to strongly believe that being a parent of a very special human being in many ways is a blessing.

77

• My Log •

Sara Liz Areces | mother When you’re ready to have a child and he/she is born with some kind of disability, you realize that you’re not truly ready and that he/she doesn’t have the disability, you have it.

This disability grows because your feelings grow, and because you’re a mother and every mother believes that she knows how to solve the necessities of her children. Especially if a mother has previous experience raising a child, she believes she can do this, but this new child has other necessities that she has never solved. Developing interior strength to fight for these children, especially your children with disabilities is when you discover that your disability is accept and manage the reality, because that child will notice his disability and that’s what he has you for.

It sounds odd, but if you look at your other children, they need so much whereas children with disabilities seldom need anything. Some barely speak, but looking at each other’s eyes says a million things. With only opening the bedroom window you can make them happy. On the other hand, children without disabilities want more things. I always explain to my children that how they see their sister, the rest of the people will as well. I don’t know if the term handicapped is correct because it usually means someone who can’t do anything, but children with disabilities can do a lot of things, they just need more help.

For some it takes more time to learn certain things, and for others it takes less time. What is important is that they reach the goal and usually this is dependent on the amount of support given. As long as you and your family treat him or her just like you treat anyone else, the family bond will be strengthened through unity and teamwork.

Within this labyrinth of emotions and steps to take, you usually ask yourself “Who do I call?” “Who can I talk to?” The answer is someone else who is actually going through what you are! After speaking to someone who has gone through a similar experience is when you realize that you can also overcome this situation and that your family will be more united. Small things in life will become bigger, necessities will change, but your life will be more complete because that child is part of your life and those loved ones around you will support you with their guidance.

78

• Testimonies •

Carmen Garcia de Paredes | mother I had a quadruple pregnancy, with preemies babies (26 weeks) managing all the ups and downs from de NICU, I received a call from the hospital that I had to go there and sign a release form for eye surgery for one of the girls. This is when it all began, before the girls were even two months old. After surgeries in Panama and going to the US to visit the most advanced doctors in the field, she finally was diagnosed as a totally blind girl. Her brother had poor vision and her younger brother died after a surgery at just three months of birth.

They became my triplets and one of them was completely blind; this became a lot to deal with. One of the things that helped me go through this was that I had no time to think; I had to act and do.

I am blessed that I have a neighbor that also has a blind boy, three years older than mine.

She gave me some contacts in Panama and in Detroit to get help. I decided to reach out to them and they started light and texture therapy since they were four months old; they continue to have therapy even today. I used to feel jealous of my own daughter (the one who does have sight) and I asked myself questions such as “If one is fine, why can’t the other one be fine as well?”. I know this is a horrible thing to say, but unfortunately it always crossed my mind. Once my daughter became a happy, sweet little toddler, I learned to live with her disability and embrace it. Two years later, my son couldn’t speak, so we took him to a neurologist and started a set of tests. After all, he was diagnosed with dysphasia of development, something else we had to treat besides his low vision, and immediately began to treat it. It was overwhelming, but we continued. Slowly but surely, the kids were getting better.

Resources for the blind community in Panama are very poor. Even though the school for the blind helped me with my kid’s disabilities, it wasn't enough. I had to do a huge amount of research and purchase products in the US. Because my daughter is in a private school I have to emboss her books myself, so I went to the NFB National convention to research the best equipment for my necessities. My son now speaks and he does it a lot. He still goes to school with a tutor, but he is learning to be independent step by step.

The success of my kids is because I accepted their diagnosis. Second, I treat my kids as normal kids; I have taken them everywhere I have been able to and all the regular kids activities; Carlos goes to soccer and Maria Victoria goes to gymnastics. Third, I don't let them misbehave; I am strict, just as I would be with any other child. Lastly, and most importantly is love. My family supports me, specially my husband. The road is not easy, but with patience, dedication and faith you see how your kids grow and develop to become the best they can be.

79

• My Log •

Indira Caicedo | psychologist, tutor, mother I began this journey while on a trip with two special needs children whom I took care of in Panama. We traveled with their parents and other colleagues in search of centers with disabled patients that could teach us advanced techniques to make sure these children grow independently and happily. During those days, I wasn’t feeling well and I thought it was repercussions from my lost pregnancy, but to my surprise the doctor I visited told me “Congratulations, you’re pregnant!”

After months of waiting for my child to be born and develop normally, on March 25th, after an emergency c-section because the umbilical cord was wrapped around his neck, my boy was born. He filled my life with happiness. Months passed by and I noticed that his development was slower than normal.

As a psychologist and therapist, I was convinced that stimulation would make a difference for him, but during these sessions I noticed that he tried his hardest to complete the daily challenged but his body wasn’t responding. It was then and there when I decided to take him to the doctor for evaluations, and the doctor told us he had delayed motor skills and recommended we begin individual therapies as soon as possible.

My mind kept revolving around the word “delayed” but I told myself I’d take him to therapy and he’d overcome this. He was taught to turn around, sit down, crawl, stand up and walk. As time passed by, he was progressing so we continued the therapies. We also began language, occupational and conduct therapy. There came a time in which I had a whole team in my house but I wasn’t allowed to lead nor participate. This gave me great frustration, angst and fear but it only made me realize that I had not accepted the fact that I had a special needs child. I passed through this moment of feeling lost; I realized that I will always be his mother, but not his therapist.

The children I’ve worked with for years and their families have become a part of my life. They have been my school and the best experience for me to take my child on the best journey these children taught me. These children teach us how to be more human, stronger and they teach use the value of the truth, of a promise and of patience.

I still struggle at times that with all the training I’ve been through, it sometimes doesn’t work with my boy. It is then when I tell myself, you are his mother not his therapist. This journey has become a life-long trip in which I continue to learn day to day. I may say journey, but it truly has no destination because I don’t know where I’ll end up but all I can truly say is that I have been blessed to live and share my life with an angel, my son.

80

• Testimonies •

Kaitlin Keene | sister Growing up as a sister to a brother with autism was struggling yet humbling. Granted, I was four years old when he was diagnosed, which made him two years old. I was young and confused and wasn't sure what autism even was. All I knew was a lot of people would come in and out of our house daily. Whether these people were therapists or teachers, he was always getting help.

It was hard being so young and not getting a lot of attention, but, due to that I learned a lot of things on my own. I learned how to read young, ride a bike, and tie my shoes all at a young age. As I was learning to do all this stuff on my own, my brother was struggling.

He didn't know how to communicate with my parents and he was always throwing temper tantrums. It was a project to brush his teeth, he wouldn't look you in the eyes, and hitting himself to calm down was just a few of his and our daily struggles. At a young age he was put through early intervention and had teaching aids all through his schooling. Because of all the work my brother went through to make him better, it has taught me and my family so much. I feel like I am more independent now, I am not quick to judge others, and I have empathy for people and what they might be going through.

With that being said, I am proud to say he now is almost 20 years old and is a student in college and working at Lahey clinic. He is high functioning and a shining star. He is so bright and intelligent, he is now helping me with my homework. He is very independent although some things are still a work in progress. I hope my family's story helps others to see there is always hope.

81

• My Log •

Activity Now it's your turn, write your testimony. Fill out the empty lines below. Write your name in the black line, your description in the yellow line and your testimony in the blue lines.

|

82

• Testimonies •

83

• My Log •

Glossary

A Accessibility Modification of buildings, curbs, and other physical structures to allow easy movement and admittance by a person with a disability. The Americans with Disabilities Act of 1990 mandates accessibility to all public and private facilities. Modifications might include ramps, use of Braille and sound adaptations.

Accessible Easy to approach, enter, operate, participate in or use safely, independently and with dignity by a person with a disability.

Acidosis A disturbance of acid-base balance in the body.

Adaptive Behavior Adaptive behavior means that the person has overall adaptive behavior which is significantly limited in two or more skill areas (communication, self-care, social skills, community use, self-direction, health and safety, functional academics, leisure, and work), as measured by an instrument which is standardized, appropriate to the person’s living environment, and administered and clinically determined by a qualified professional.

ADD Attention Deficit Disorder. A disorder that shows up in the areas of inattention and impulsiveness. It is evidenced by having difficulty organizing and completing tasks correctly, frequent shifting from one activity to another, failure to follow rules. ADD without hyperactivity refers to the disorder without a high degree of atypical motor activity ADHD Attention Deficit Hyperactivity Disorder. This is similar to ADD but includes gross motor over activity, such as excessive running, talking, or manipulation of objects and excessive fidgeting and restlessness.

AFDC Aid to Families with Dependent Children. A financial AIDS Acquired Immune Deficiency Syndrome.

Alzheimer Disease A degenerative disease of the brain, causing mental degeneration.

84

Amniocentesis Amniotic fluid is drawn from the uterus during pregnancy to determine genetic or biochemical abnormalities in the fetus.

Anoxic Pertaining to or caused by lack of oxygen in the blood.

Apraxia Inability/difficulty in initiating or performing purposeful movements.

ASL American Sign Language. A formal method of communication used by people with hearing impairments. It is a system of articulated hand gestures and their placement relative to the upper body as well as facial expression, movements, postures and other non-manual signs that enhance and emphasize the meaning of signs.

Asperger Syndrome or Disorder A developmental disorder characterized by a lack of social skills, impaired social relationships, poor coordination and poor concentration.

Children with Asperger Disorder have average to above average intelligence and adequate language skills in the areas of vocabulary and grammar, but they may not understand the subtleties used in conversation such as irony and humor. It is believed that Asperger Disorder has a later onset than Autistic Disorder or at least is generally recognized later.

Assistance program for single-parent families. Modified in the welfare reforms of 1997.

Atlantoaxial Instability A greater than normal mobility of the two upper cervical vertebrae at the top of the neck. Usually found in persons with Down Syndrome.

ATNR Asymmetrical Tonic Neck Reflex. With the head turned to the side, the arm on the face side is extended while the arm on the skull side is flexed.

Augmentative or Alternative Communication Non-verbal communication such as sign language, symbol systems (communication boards) or electronic voice output devices.

Autism A developmental disability significantly affecting verbal and nonverbal communication and social relationships, generally evident before age three, which adversely affects a child’s educational performance.

B BI Brain Injury.

Blepharitis Inflammation of the edges of the eyelids.

C CAT Scan Computed Axial Tomography. A radiological technique to produce a picture that shows the brain in cross section.

85

• My Log •

Cerebral Palsy (CP) Conditions which exhibit spasticity, weakness, lack of coordination or any other motor problem due to organic brain damage. These include sensory and/or movement disorders, seizures, intellectual, learning disabilities and disorders of behavior.

CMV Cytomegalovirus A virus which can result in damage to a fetus.

Co-contraction All muscles around the joint are working so that the joint, when pushed from any direction, won’t work.

Cognitive A broad term that refers to any class of mental “behaviors” such as reasoning or problem solving. Awareness with perception.

Conductive Hearing Loss A loss in which the intensity of sound vibrations reaching the auditory nerve in the middle ear is reduced.

Cyanosis Bluish discoloration of the skin or fingernails and toenails caused by a lack of or diminished oxygen supply.

D Developmental Delay Being behind other children of the same age in achieving cognitive, adaptive, physical, and social skills.

Diabetes A general term for diseases characterized by excessive urination and thirst.

Down Syndrome A syndrome resulting from chromosomal abnormalities.

Dysarthria Inability to speak or difficulty speaking which results from muscle weakness and/or lack of coordination in the chest, neck or mouth.

Dysphagia Problems related to swallowing.

Dyspnea Shortness of breath.

E EBD Emotional Behavioral Disorder; also Elderly Blind or Disabled.

Echolalia Repetitive, parrot-like speech using words spoken by others.

Enuresis Bed-wetting.

86

• Glossary •

Epilepsy Brief temporary changes in the normal functioning of the brain’s electrical system. Also known as seizures.

Equilibrium Reactions Response to regain or maintain balance.

Esotropia One or both eyes turning inward abnormally (cross-eyed).

F Fine Motor The use of small muscle groups for controlled movements, particularly in object manipulation – such as movements our hands make, how we hold on to things and move our fingers.

Fluency The smoothness with which sounds, syllables, words and phrases are spoken; lack of hesitations, repetitions or stuttering.

Fragile-X Syndrome A genetic cause of intellectual disability

G Gross Motor Movement that involves balance, coordination and large muscle activity as required in holding your head up, walking, running, jumping and other physical activities.

H Handicap A mental or physical impairment which prevents or interferes with normal mental or physical activities and achievement. The preferred term is “disability.”

Hepatitis B An inflammation of the liver caused by the Hepatitis B virus; it is contagious.

Hydrocephalus This condition results from widened cerebral spaces in the brain that inhibit the flow of cerebral spinal fluid. The cerebrospinal fluid collects and puts pressure on the brain. This can cause an enlarged head and may be treated with a fluid shunt.

Hyperactivity Excessive or abnormally high level of motor activity. May be associated with Attention Deficit Disorder.

Hyperkinesis Excessive muscular activity.

Hypertension High blood pressure.

Hypertonic Increased tension in muscles; spastic.

87

• My Log •

Hypotension Low blood pressure.

Hypotonic Reduced tension in muscles; floppy.

I Idiopathic A disease or condition arising spontaneously or from an obscure or unknown cause. Peculiar to the individual.

Impetigo Rash with small blisters which become crusted and drain; usually occurring around the nose and mouth. Impetigo is contagious.

Inclusion To have the opportunity to participate in all activities available in a community; for example, education in a traditional classroom.

M Multiple Disabilities Term for students having two or more significant impairments, one of which is cognitive. Historically this was referred to as Multiple Handicapped.

N Negative Reinforcement A behavior that results in removing something that the person does not like. Because the behavior allows the individual to stop or remove something that is unwanted, the behavior is likely to occur again. For example, upon hearing loud music, a person turns down the radio to remove the stimulus hurting the person’s ears. Next time the person encounters a similar situation, the person is likely to turn the radio down again because it resulted in removing something that the person found aversive.

Nocturia Excessive urination during the night.

O Occupational Therapist (OT) Therapist who uses purposeful activities to improve movement and coordination, visual perceptual skills, self-help skills, and reading skills.

An OT is also trained to adapt equipment.

88

• Glossary •

P Phonetic An instructional approach to reading that stresses sounds of words in relation to their written representations. Science of speech pronunciation.

Photophobia Intolerance to light.

Physical Skills The ability to move, see, and hear.

Physical Therapist (PT) Therapist who works with an individual, generally through exercise, to improve movement patterns.

PKU Test Blood test performed soon after a child is born. It detects phenylketonuria, which is a metabolic disorder that fails to oxidize amino acids. If untreated may result in an intellectual disability.

PTSD Post Traumatic Stress Disorder.

R Recreation Therapy The use of recreational activity in a directed program in the care, treatment and rehabilitation of ill, disabled, and elderly persons.

Rehabilitation Process of restoring to useful activity a person who has been ill or who is disabled. Accomplished through education and therapy

S Seizure Unusual muscular or behavioral activity caused by abnormal brain impulses Sensorineural Hearing Loss Damage to the nerves in the ear that results in hearing loss.

Sensory Information obtained from touch, pressure, pain, temperature, sight, smell, taste and movement.

Sensory Integration The brain’s ability to receive, organize and interpret sensory information. SI programs focus on assisting an individual to increase this capacity.

Sensory-Motor In the development of a child, learning occurs through the interaction between the senses and muscular system. The child explores by touching, tasting, seeing, smelling, moving, hearing, etc.

89

• My Log •

Sign Language Means of communication that uses hand gestures as symbols for words.

Speech and Language Therapist An individual with a Master’s Degree and certificate in speech and language pathology. Speech and language pathologists are qualified to diagnose speech, language, voice and fluency (stuttering) disorders and to plan and implement therapy programs.

Stimulus A person, place, or thing - including light, sound, taste, texture and odor. A stimulus evokes a person to respond in a certain way.

Strabismus Eyes cannot move in unison due to lack of muscular coordination. Squinting.

Strapesius Reflex The reflex which protects the ear from loud noises.

T TBI Traumatic Brain Injury. An acquired injury to the brain caused by an external physical force resulting in total or partial functional eligibility of psychosocial impairment, or both, that adversely affects a child’s educational performance.

Tourette Syndrome (TS) A neurological disorder characterized by tics - involuntary, rapid, sudden movements or vocalizations that occur repeatedly in the same way.

Tracheotomy Opening and inserting a tube into the trachea to facilitate breathing.

90

• Glossary •

91

• My Log •

References

World Health Organization; Health topics, Disabilities; http://www.who.int/topics/disabilities/en/ World Health Organization; Health topics, Disabilities; Better health for people with disabilities; http://www.who.int/disabilities/infographic/en/W Developmental Disabilities Resource Center (DDRC); Resources & Training; Glossary of Developmental Disability Terms; http://www.ddrcco.com/resources-and-training/glossary-of-developmental-disabilityterms.php TED Talk; TEDMED; Andrew Solomon: Love, no matter what; http://www.ted.com/talks/andrew_ solomon_love_no_matter_what?language=en#t-1383263 Beth Jacobs, PH.D. 2004; Writing for Emotional Balance; edited by Kayla Sussell; New Harbiner Publications; Raincoast Books; http://www.amazon.com/dp/1572243821/?tag=googhydr-20&hvadid=37 964636856&hvpos=1t1&hvexid=&hvnetw=g&hvrand=3716168987534042077&hvpone=16.47&hvptwo=34 &hvqmt=b&hvdev=c&ref=pd_sl_78fopg79l1_b Dennis Drotar, PH.D. 2006; Psychological Interventions in Childhood Chronic Illness; http://www.apa. org/pubs/books/4318027.aspx World Health Organization; Global Health Observatory (GHO) data; Life expectancy; http://www. data360.org/dsg.aspx?Data_Set_Group_Id=195 Center for Participation Research, Catholic University of Applied Sciences North Rhine - Westphalia Münster, Germany; Dieckmann, Giovis, Offergeld, The Life Expectancy of People with Intellectual Disabilities in Germany; http://www.ncbi.nlm.nih.gov/pubmed/26256274 Help Guide; A trusted non-profit guide to mental health and well-being; Coping with Grief and Loss; Understanding the Grieving Process; http://www.helpguide.org/articles/grief-loss/coping-with-griefand-loss.htm United Nations Enable; Development and human rights for all; factsheet on persons with disabilities; http://www.un.org/disabilities/default.asp?id=18 BJ Miller; Palliative caregiver; TED Speaker; What really matters at the end of life; https://www.ted. com/talks/bj_miller_what_really_matters_at_the_end_of_life

92

Disabilities, Family Response To Disabilities; <a href="http://family.jrank.org/pages/397/DisabilitiesFamily-Response-Disabilities.html">Disabilities - Family Response To Disabilities</a> Disabilities, Impact of Disabilities on Families; http://family.jrank.org/pages/396/Disabilities-ImpactDisabilities-on-Families.html Wendy Taormina-Weiss; Disability Communities & Clubs; People with Disabilities, Family Members and Financial Hard Times; Disabled World; http://www.disabled-world.com/communication/community/ hardtimes.php Euro Med; Nach Oben; Impact of Illness on the family; http://www.euromedinfo.eu/impact-of-illnesson-the-family.html/ Facing Disability Together; Vivian J. Carlson, Ph.D., Human Development & Family Studies, Saint Joseph College, West Harford, CT; Birth 5th through news; http://www.birth23.org/files/b5news/ B52011Spring.pdf World Report On Disability; World Health Organization; The World Bank; http://www.who.int/ disabilities/world_report/2011/report.pdf

93

• My Log •

94

Connecting the world & creating awareness for those with disabilities.

Isabella Eisenmann Isabella Eisenmann was born and raised in Panama City, Panama.

In 2016 she graduated as a Graphic Designer from Massachusetts College of Art and Design in Boston, MA. For her senior degree project she chose to write and design this book. She shares her life experience and knowledge as a sister of a special needs boy.

Eisenmann wishes to connect the world and create awareness for those with disabilities.

MyLog is a service to create awareness in regards to any type of disability. This service will give the families a medium to express their feelings, let go of their fears, educate themselves and connect with others who are going through the similar situations. It is meant for immediate family members and relatives of people with disabilities.