By Karen Schulz-Perez, PhD

Many years ago, when I was a little girl, my father injured his right hand (dominant hand) while getting our family garbage ready for pick up.  Being too young to be involved in the activity itself, I can only know what happened and the immediate injury as related in stories by my mother, brothers, Grandparents, Uncle and my Aunt (who was a RN).   I know that what I did learn and what I do remember (on my own) did eventually create such a desire in me to become involved in working with persons who had experienced a traumatic injury. It also created a desire to work with families, friends and employers of these individuals. Initially I thought the person(s) most involved was my first grade teacher, the principal of our school and the minister of our church, so I became a teacher in the parochial school system. Later on in life, I realized there was more “to this story”, so I entered the medical profession and eventually specialized in behavioral health involving medical and psychosocial aspects of disability and chronic illness. However, it was my first grade teacher that started the “creation of desire within me”.

So what happened?  We lived in a semi-rural area that had “city-type amenities” (curbside garbage pickup was one) but was still a habitat for various wild animals such as skunk, raccoon, deer, and even fox. Therefore, my Dad was very adamant about making sure our garbage did not provide “restaurant amenities” for wild animals. Evidently, my Dad was “pushing the garbage down into the garbage can” so he could place the lid tightly on the can.  Unknown to him, there was a cracked glass jar near the top.  While pushing down on the garbage, the cracked glass jar split and broke while at the same time pushing the jagged, broken edge of the jar across and into my Dad’s wrist and forearm. I remember a lot of blood and my older brother running over to our neighbor’s house screaming at the top of his lungs.  I found out later that our neighbor took my Dad to the hospital; the ordeal then started.

What about my Dad and his medical treatment?  I don’t really remember too much about that.  I remember some things as if they happened just yesterday.  One of the things I do remember is my Aunt (the RN) sitting at our kitchen table with my Mom and telling her, “ . . . his hand will probably be amputated . . ”.    I remember wondering, “. . . what is ‘ampooted’ . . .?”  I asked my Mom, she did not hear me talking to her and my Aunt told me I was too young to understand.  Understand?  All I understood was my Dad was gone, my Mom was crying and my Aunt telling me I was too young to understand what ‘ampooted’  meant.  I decided she needed to see my progress report; after all, I was in the First Grade!  I got my progress report, showed her my reading grade  -- if I could read, I could understand!  But, it did not help.  Instead, both my Aunt and my Mom told me to go do my homework.   Then it hit me!!!  I will ask my teacher what ‘ampooted’ meant!!!   The next day was Sunday.  I remember walking to church; we only had one car and my Dad was the only driver in the family.  My Mom didn’t drive and my brothers were  too young to drive.  Therefore, we walked the  mile to church.  I could hardly wait to get to church to see my first grade teacher.  When we arrived at church, I ran to her screaming, “what does ‘ampooted’ mean?  My Aunt told my Mom that my Dad’s hand will be ‘ampooted’  --  and it made my Mom cry.   I need to know…they told me I was too young to understand.”  She looked at me and said, “what are you asking me?”  I asked her again, “what does ‘ampooted’ mean?”  By then, she saw my Mom talking to the minister and crying.  She turned and started walking away from me toward my Mom; I grabbed her skirt and would not let go.  She took my hand and walked over to the minister and my Mom.  When we got to them, the minister started talking to my teacher.  I remember hiding behind her skirt and wondering, still wondering, “what does ‘ampooted’ mean?”  I finally realized my teacher was crying and I came out from my hiding spot.  The minister saw me and said to my teacher, “send her to Sunday School, she is too young to understand what happened to her Dad.”  My teacher said, “No, I will not send her off to Sunday School.  She is old enough to understand  --  old enough to understand that she does not know what is happening; she is a lost child right now . . . I will talk with her.”

Although I don’t remember the particulars of that conversation (my Mom later told me about it), I do remember my teacher bending down, wiping the tears from her face and putting her hand on my cheek.  By then, I had started crying  --  after all, my Dad was not with us at church (we always went to church as a family), my Mom was STILL crying, and my first grade teacher was now crying.  I was so confused; my world was shattered because all the most important and strongest people in my life were gone or crying.  My teacher took my hand and took me with her.  I remember, she did not wipe my tears; she did not tell me to stop crying.  That was confusing to me as everyone else had been telling me to stop crying. 

Again, the question  --  what about my Dad and his medical treatment?  From what I have been told, my Dad’s medical treated went on for years and years.  No, he did not get his hand ‘ampooted’ (amputated), but he pretty much lost the use of his right (dominant) hand.  My father is now 82 years old and this injury occurred when he was 38 years old; and,  medical abilities then vs. now were so much less.  So, even with all the surgeries and attempts at reconstruction, it is as if my Dad’s hand was amputated.  From what I understand, my Mom told the doctors she would not allow them to amputate my Dad’s hand.   I remember my Dad being gone (always and forever it seemed) --  which I later found out he was in and out of the hospital for multiple surgeries.  I remember my Mom being gone a lot (and it seemed always and forever with her too)  --  which I later found out she was at the hospital with my Dad.  In addition, I remember walking and walking and walking (my Mom didn’t drive and my Dad was in the hospital). So we walked everywhere we went.

Understand, when this traumatic injury occurred to my Dad and thus changed our lifestyle, I did not understand anything about that at all.  What I do remember is feeling lost, forgotten, confused and ignored.  To say I felt unloved, is not true.  What I did feel, but did not understand, was a lack of nurturing by consistent and loving caregivers (my parents).  I know now, that they did the best they could; but as a 6-year-old, I just didn’t understand what was going on and I felt so alone.   If it was not for my first grade teacher and principal of the school, I do not  what would have happened to me or my brothers  -- and for that matter, to my parents.  For not only did my teacher and principal “take custody” of me and my brothers, they also helped my Mom and Dad in many different ways.

I remember that for years and years it seemed I was always at school and church  -- ALL THE TIME! (our school and church were in the same building).  I remember spending a lot of time with my first grade teacher (even after the first grade) and the principal of the school.  They both chose to nurture me (and my brothers who attended the same school); they chose to help us through our reactions to my Dad’s disability and how it affected our family.  They realized that the stresses and demands of my Dad’s injury were different for each one of us, as we were all different people.  They were aware of our own special strengths --  they used them and allowed us to display our emotional expressions (feelings) in a positive, structured environment.  They were empathetic and would not allow us to be over-protected or ignored.  They took us through early childhood through school aged childhood.  This does not mean my parents did not nurture, love and provide for us.  They most certainly did as they had already laid the groundwork for our development by including some of our life’s activities though school and the church.

I am not promoting church or school, that is a person’s individual choice  --  what I am encouraging is for all of us to remember that no matter what the injury (or chronic illness) is, it effects everybody, not just the individual with the diagnosis.  We, as a person (treating professional, family member, employer, friend, etc.) should be aware of the children because they do understand.  They may not understand what it is all about (and, really what adults most often fully understand?), but the child(ren) do understand there is something wrong because it hurts inside of their mind and heart.  Children feel the same grief, fear, anxiety, anger, depression and guilt that an adult feels, though on a child’s level. It is up to us, as a person – professional or not, to “take custody” of the child(ren) that are involved in this type of situation.

So, what shall be done with that precocious child  --  the one who is asking so many questions and seems to have lost all of their manners ?  The following is a brief list of things to remember when working with children whose parent has been catastrophically injured or is chronically ill.

1. Discussions with the child are very important; do not ignore them.  Do not tell them that they would not understand.
2. It is  important to talk with the child face to face, eyes to eyes; kneel down, sit down, but do not stand or bend over from the waist to talk with the child.  Reposition yourself so that you are looking directly at them (face to face) when you talk with them.  If you are not at the same level as the child, they will not open up and talk with you nor will they listen to you.  You will not be able to build trust with them.
3. When speaking with a child, always speak softly; do not raise your voice as speaking too loudly will scare them.
4. The child may not fully understand everything that is going on (medical, etc), but they know there is something different, so do not try to hide it from them.  Explain to them that there is something different about their parent and talk with them about it every day.  Ask the child to to tell you what they know or think is different.  Encourage them to ask you questions.
5. Whether this occurs during the life cycle process of a child of infancy/early childhood, school age, or adolescence, remember they have feelings too.  Make sure they understand that feelings are neither right nor wrong, but that “feelings just are”.  Validate their feelings and let them know you have feelings about the situation too.  Discuss (compare and contrast) their thoughts and feelings and also yours for various days.  The child will experience a myriad of thoughts and feelings with some of them being:  lost, forgotten, confused, ignored, angry, and loneliness.
6. The child will feel the lack of nurturing from their parents, but not understand it.  They will not truly understand the lack of attention from their parents; they just feel ignored, mixed with either low self-esteem or guilt.  They may react in various ways, but two of the most common is acting  quiet and withdrawn (low self-esteem or guilt thoughts of “I must have done something wrong … if I am quiet and perfect, then I will be noticed”) or they may act out in a negative manner performing activities that would certainly get someone’s attention.
7. Understand a child will not look at the change in lifestyle as an adult would.  They do not think about house payments, car payments, etc.; instead, they think about activities with friends, school functions, etc.  If you are the parent trying to keep everything running smoothly, do not be afraid to contact your child’s teacher(s), principal, and parents of their classmates/friends and ask for assistance.  Ask the teacher if your child can stay after school and receive homework assistance from one of their teachers.  If the child is involved in after school activities, talk to the parents of their friends and seek assistance with transportation or other activities (including playtime).  If the child is involved in sports, talk to the coach.  And believe it or not, in your own home, give the child some change in responsibilities; tell them, “I need your help….it is important to me and to (other parent) for you to help with this … you do a very good job when you fix dinner,  clean your room, etc.”   It is also very important to reward the child for their change and follow-through of responsibilities.  Sit down with them and work out a payment system.  It does not always have to be money; barter for exchange of services.  And remember, think on the level of the child; that is, think “small steps” not large ones  --  it may take them three days to do something that you, as an adult, may only take one day or even one hour to accomplish.
8. Do not allow your child to miss school or other activities.  It is important for them to enhance their physical and cognitive abilities by being involved with their peer groups on a consistent basis.  Absences will only diminish social interactions with their peers and eventually create hurt and emotional pain as the child becomes a stranger in their own peer group.  A child needs to continue with social interactions and activities to develop skills and abilities that are needed for later integration into the larger world.
9. Although, it is important to discuss what is occurring with the child, remember  ---  they are in fact “a child”; do not include them in adult activities.  As a parent, do not use them as your friend and involve them in your activities.  Let them be a child and spend time with their peer group.  Just as you want to talk with your friends as to what is happening/not happening, so does your child want to talk with their friends.  If you take them everywhere with you or include them in adult activity, you are not allowing them their time to talk with their friends (and even talk about their feelings with their friends).
10. It is also important for your child to be allowed the opportunity to talk with a professional in behavioral health regarding the catastrophic injury or chronic illness of their parent.  After all, they hear about how Dad and/or Mom always are at the hospital or talking with the doctor.  Let the child have a doctor with whom they can discuss the situation.  It would even be prudent to talk with the child’s physician  and ask the pediatrician if they would discuss the medical aspect with the child.  Who better to tell the child what is happening to their parent than a child specialist in the field of medicine and or behavioral health.

As you may recall, at the beginning of this article I referred to my first grade teacher, my school principal and my minister.  These individuals spent many hours with us when my Dad was injured and continued to receive medical treatment.  As my brothers and I grew up, attended high school and college, these three individuals stayed in our hearts and minds throughout  --  and still do.  My two brothers and I entered the ministry/teaching professions.  And, although, I eventually went on to medicine, I still teach and work with the youth in our area.  My brothers and I “patterned” our life after these three people; and, my parents  were proud of us for acknowledging the nurturing and love they gave us. 

If you remember nothing else from this article, remember  ---  the precocious child(ren) has a heart…help them “run in life with a heart filled with love and understanding”.