The Shriver Report. Loving a Child with Mental illness

Hix_K_Family Pic

Faith. Love. Hope.

These are words I heard all of my life but I did not really feel their true meaning until my son was born 18 years ago. Now, they are my motto that I try to live by every day.

What we did not know at the time of his birth, but soon began to realize, was that something was wrong. Over the years the depth of his complications and the challenges they would bring to him and our entire family would begin to unfold layers at a time. Bit by bit.

Almost immediately after he was born, we realized my son, Zack, was a very challenging baby. He did not cry; he screamed. He was incredibly difficult to take care of and soothe. The difficulties are too extensive to divulge here in this short post but can be read in depth on my blog.

As he became a toddler, he began to have lengthy rages sparked by the most minor incident. His unpredictable rages could, and would, last hours. They would begin in a flash and he would literally turn into an unrecognizable child. Then when they were over he would return to a sweet, loving, and remorseful little boy. He also began to focus on strange things. For example, all of the toilet seats in the home had to be put down. He would go around the house several times a day checking them. He would only drink from one cup and eat on one plate. These are typical behaviors of those with Obsessive Compulsive Disorder but I couldn’t help but wonder – so early?

My sweet son has been dealt quite a full deck of difficult and challenging “disorders,” classified as neuropsychiatric illness, better known as mental illness. Unfortunately, he is not alone. Millions face these same demons. For my son, it is believed there was some brain damage either in utero or at birth (most likely at birth since we know the birth itself was complicated) that led to these complications.

He was also a very sick baby with chronic ear and strep infections that at some point most likely brought out his OCD at an early age. This phenomenon is called PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe children who have OCD and/or tic disorders such as Tourette Syndrome, and in whom symptoms worsen, or appear almost overnight, following infections such as strep throat and Scarlet Fever.

Zack was officially diagnosed with PANDAS after he had another strep infection in the fifth grade that induced acute onset of tics that were severe and difficult to manage. He also struggles with some learning disabilities, anxiety, depression and has sustained three head traumas.

After years of chaos, destruction, tears, questions and uncertainty along with the constant search for help and answers, we finally were given some answers to his erratic, unpredictable behavior and mood swings. We finally connected with a wonderful specialist who has now been treating Zack for 14 years.

But the strain of raising a child such as mine is monumental on a marriage and family. Throughout the years, I spent countless hours reading, researching, and obsessing over finding out what was wrong. When he was a toddler I attended several parenting seminars led by specialists that I felt surely would have that magic answer for what was wrong and how to fix it all. How to make the raging stop, how to make him sleep, how to be…calm. I read book after book. I tried every sensible and outlandish suggestion they all had. Nothing helped and nothing worked.

I think even more frustrating was that my husband, though supportive, did not have the same passion as I did for finding an answer. I would leave books out with highlighted text or other documents with similar cases and ask him to read through it. He never did. I also tried to be the authoritarian, trying to set rules and limits, while my husband did not. We disagreed, argued and yelled.

Despite the constant chaos, I wanted another baby. I figured it was already difficult, so another baby could not be any worse. No baby could possibly be as difficult as Zack. After a year and half of trying, and loosing two babies, our beautiful daughter Kelsie was born. We did not find out with either child what the sex was. When she was born and they told me she was a girl I cried. I was so relieved it was not another boy because I was so afraid it would be like Zack. I knew I would not be able to handle that. Thankfully, she was a wonderful baby, easy to sooth and slept and napped easily. I think God knew I needed that because Zack was still so hard to manage.

“I have been fortunate enough to have the ability to be Zach’s main caregiver while working part time jobs (as a counselor, personal trainer and patient advocate) off and on when I am able to.  But being his ‘person’ is a huge responsibility.”

It is she, Kelsie, who I think has suffered the most, aside from Zack. We – his parents – love him, support him and wanted him. She was brought into this chaos by us. Her life has been greatly impacted by the constant needs that Zack places upon me and my time.  I have been fortunate enough to have the ability to be Zach’s main caregiver while working part time jobs (as a counselor, personal trainer and patient advocate) off and on when I am able to.  But being his “person” is a huge responsibility. At 18-years-old, he is still very needy and functions mentally about at the age of 14. He is very immature, very emotional, and very dependent despite our attempts to encourage him to become more independent.

Some days Zach is like most other kids his age, but most days he is not. It is those days – the days he is raging, screaming, yelling, crying, throwing things – that Kelsie cannot forget. The days her friends are not allowed to come over because her brother acts crazy. The vacations we could not go on because her brother was too unstable. The family outings ruined because of his poor functioning or rage that came from no where. She carries anger and resentment as a result of his many problems and illnesses and struggles with depression and self esteem issues because of this unpredictable, dysfunctional life we live. She feels that she always comes in second and caring for her brother comes first.

The damage done to a family while raising and loving a child with such complicated and chronic issues is unfortunate. Living in such a high stress, chaotic atmosphere affects everyone. We do not survive day by day, but minute by minute.

“Living in such a high stress, chaotic atmosphere affects everyone. We do not survive day by day, but minute by minute.”

Medications have not been very effective in helping him become stable or remain stable. He – or more accurately, we – have enjoyed some periods of stability which we learn to appreciate. Over the years Zack has made some great strides and progress but his future is uncertain.  Our hope is that he will eventually be able to be self-sufficient, which was part of the reason we have created his business – Good Boy Roy, an online store that sells merchandise with his drawings and characters. The dream is that it will enable him to do what he loves and be able to financially support himself someday.

Today, my husband and I continue to do the best we can for both of our children – Zack, who is now 18 and Kelsie, 14. I am told a marriage that has lasted as long as ours has (21 years) in the midst of this kind of circumstance is almost unheard of. Somehow we are able to laugh – a lot. At the end of the day, these are my children. My heart. My family.

Mental illness is not a choice.

Mental illness is not contagious.

Mental illness does not discriminate.

Knowledge IS Power.

From The Shriver Report

http://shriverreport.org/loving-a-child-with-mental-illness-kim-hinx/

Mental illness Destroys

I am torn.

Truly torn.

What is a parent to do?

There are no good options here for us trying to love 2 children, one with severe mental illness. I have 2 children. I love 2 children.

Mental illness destroys families.

It does it every day.

Mental illness kills dreams.

It does it every day.

Mental illness is NOT fair.

I see that every day.

Mental illness kills people

Every day

My son, now 18, legally and adult, has been plagued with multiple and untreatable mental illness all his life. That, in turn, means our family has lived in almost constant chaos, uncertainty and hell for that entire time as well.  As his parents, my husband and I know we have to care for him, and lovingly do so. When stable he is a sweet, loving, caring boy. Unfortunately the stability never lasts long. His mood swings are constant, his rages frequent, the stress and heartache it causes us all is never-ending. The thing is….it’s not his fault. He can’t help how he acts. And HE hates his behavior and actions worse than anyone.

He is tortured by himself.

We are at the point now that our daughter, his sister, is suffering. Suffering. Struggling. Angry. Resentful.

Angry she doesn’t have a normal brother.

Angry she doesn’t have a normal family.

Angry friends can’t come over because her brother is raging or unstable.

Angry at life.

Angry.

I don’t blame her.

She doesn’t deserve this either.

We are now faced with  “its him or me”

She says….” it’s him or me”

put him out, send him away, call the cops, or I am leaving, she’s had it, we all have.

I can’t blame her.

She deserves peace.

She can’t find it here.

But, where can we send him? He hasn’t broken any laws. He can’t support himself. He is still in school. He is unstable. The hospitals have no beds.

There is no good option.

He is our child, a lovely boy, the real boy is the most loving child you could ever meet. If we can just get him stable. If we can find the right mix of medication. If

If…If…..

But, when unstable,he is someone else. Someone no one likes. Someone who drives everyone away.

It’s not his fault. His mind is the enemy.

Mental illness kills, destroys, leaves a path of destruction.

It’s not fair

** I realize mental illness does not affect all victims this way, this is OUR experience. Many people with mental illness are treated successfully and enjoy life without complications.

My child is in the Psychiatric Hospital and no one cares

Rethink Mental Illness

Rethink Mental Illness (Photo credit: Wikipedia)

I was speaking to a friend today whose child was recently in the hospital, the Psychiatric Hospital to be exact. This smart, educated, kind, soft-spoken mom I have gotten to know because we both love and raise children with mental illness.

She was asking how things were going, knowing the past few weeks have been incredibly difficult with my son being unstable. As we discussed the ups and downs of mental illness, the stability and instability roller coaster, we discussed how the Stigma associated with Mental illness is still so wide-spread and doesn’t seem to be making any headway with culture and society understanding this. She commented that when she had to hospitalize her little boy, who is diagnosed with Bipolar disorder, a few months ago, that no one acknowledged it. Unlike when someone is in the hospital for an illness, cancer, injury etc…neighbors usually rally to the family to offer support. Well meaning and kind neighbors bring casseroles and food by for the family to “help  out”, cards are sent to the family and/or person in the hospital. But, when you are in a metal hospital NONE of this happens. No cards came to her family or the child. No one asked if she needed help with anything. It was simply not mentioned.

Why?

Why is that?

Why is it that when you are in the hospital because your mind is “sick” that no one cares? Why is it different from your body being sick or broken? We understand Autism, and how that manifests itself in the childs behavior, actions, social functioning. Mental illness is no different, it can and does affect people the same way, in varying degrees. Is it because most people with a mental illness “look normal“?  You can’t see what their disability or challenges are? You can not see the sick mind?

I have been told that too. “Your son looks so normal. I would never know anything was wrong with him”

Well….ok. No, you can’t SEE OCD/Depression/Anxiety/Tourette’s or learning disabilities until and unless the symptoms of these are actively present in the person. But I can assure you, lack of any outward, visible “disability” does not lessen the severity.

Please, if you ever have a friend, a loved one that suffers from mental/emotional illness, hospitalized due to their illness, please don’t ignore them. Don’t pretend they aren’t really sick. Dont pretend they are there because they aren’t “strong” or can’t “handle things”.

They need help.

Help with a brain that has an illness, just like broken bones, diabetes, cancer, lupus, COPD and others.

Send a card. Bake a casserole. Offer a kind ear and understanding.

Mental illness and Family

Loving and raising a child with mental illness is nothing less than exhausting, on a daily basis. We do not live day by day, yet minute by minute. Anything at all can quickly change a mood or atmosphere from calm to chaotic.

As a parent, I, we, accept this life. This constant chaos. This life of uncertainty. The innocent victims as I see it are the siblings of these intense, high maintenance, chronically needy, mentally and emotionally challenged children. And, of course, the affected child themselves.

These kids certainly in no way deserve this life they live. This life of wanting to belong. Wanting to fit in. Wanting friends. Wanting “normalcy” that most likely never or rarely comes their way. ( I am speaking from our experience) My son, Zack, wants all of these things. The stability he enjoyed at times is never long-lived. This fact is not lost on him, as he begins to feel “normal” chances are the medications always stop working that lead to a spiraling down of ability and functioning.

This prompts more calls to the doctor, more changes in medications, more possible side effects to look out for. Day in, day out. Hoping, praying that the “just right” cocktail of meds will soon be found.

My daughter, now 14, has endured a life certainly unfair as well. As do so many other siblings of children with some form of a
“disability”  be it physical or mental.  The constant appointments they are dragged to along with their sick sibling. Outings and vacations not allowed because her brother was “unstable”.  For us, it was constant doctors visits, counselors, therapist offices she had to sit around in all her life, patiently waiting as her brother was seen. The sacrifice she has made being part of this family is endless.

The resentment she feels today, as a teenager, is certainly understandable, although heartbreaking. This life has taken a toll on her. On all of us. A mentally ill loved one, especially living with you, affects the entire family unit. Usually not in a good way. We live, function, press on, in a way that is normal to us, dysfunction at it’s best.

We just go on.

Because that’s what we do. It’s who we are. Family.

We hope, we pray, we laugh, we cry, we love, we support, we survive Together.

We are Family                                                   

cruise pic..proper

People with Mental Illness are more than a Label

 

This blog post from FriendsofSnowflake really hit home with me, as my son Zack, is often referred to by his label. “Is he bipolar?” “Is he autistic?” No he IS not any of those things. He is a boy, a teenager, an artist, a son, a brother who lives with brain illnesses that greatly affect his functioning at times like OCD, ADD,Tourette’s, Depression, Anxiety, learning disabilities. Below is the post that is heartfelt and sobering.

Reblogged from Snowflake:

“A person that is referred to by a label like: schizophrenia, depression or bi-polar is seen as a set of symptoms explained by a certain psychological category. Not only is this demeaning but it is rude to see a person without the light of their characteristics and human qualities that have been forming and transforming since birth and maybe even before birth.

I referred to my label as the ‘s’ word for the longest time. (From Wikipedia – Schizophrenia  is a mental disorder characterized by a breakdown of thought processes and by poor emotional responsiveness.[1] Common symptoms include auditory hallucinations, paranoid or bizarre delusions, or disorganized speech and thinking, and it is accompanied by significant social or occupational dysfunction.) This definition scares me and leads me to have more symptoms just be reading the darn thing, no wonder I called it the’S’ word.

I tried to talk to people about the possibility that their could be some positivity, imagination and worth – in the schizophrenia I dealt with. This made me feel good. Some people were curious and interested. It was neat to tell people a bit about the different communications with nature, God and loved ones that aren’t physically here anymore. But due to some of the misunderstanding of symptoms and more than that the enormous amount of symptoms I feel at times it is not always positive. With the people who’s help I have reached out for lately, I have used the word schizophrenia more freely. I was hoping it would help me: come to terms with symptoms,  lessen the amount of hearing unknown energies and relate better to others dealing with mental illness.

Well it seems to have done what it was meant to describe. It seems to have made me see things as an illness. I see this illness as the problem I have to live with. In some ways this is a relief. I can feel the sympathies of others.  But in other ways it is wrong.  You see, some of the ways that people see things, hear things and imagine things are beautiful and exceptional. I wouldn’t call that an illness for the world. Some of us who have schizophrenia could be seen as talented and worthy of respect for this quality alone. Some movies help show that people who are different are important and need love too.

But…. whether or not seeing and hearing things can be good or bad….. whether or not it should be treated as a problem or a solution… whether or not it requires medication or understanding.. , there is more to a  person than just their mental illness.

These are some of the different things about me that I don’t often share. I have studied spirituality in the light of New Age teachings for many years and recently have become interested in the teachings of Jesus. I have become more open to people differently-abled. I have accompanied some people through the process of living out senior years. These are all really valid learnings and I have been aware of other things like this over the years. If I am just seen as a label these valuable parts of me become lost.I am worried about that.  The energy in me wants to teach, inform, love and value others. Will the medical profession give me a chance at this? Will my family ever see me as much more than this label?

I like peanut butter chocolate ice cream and I didn’t eat it for ten years in standing up for the value of an ex-boyfriend you had also liked that kind of ice cream. I was determined and dedicated. I had a beautiful large plant given to me… and when it died I took a taxi to a place that had a compost for plants and gave it a proper resting place. I was thoughtful and resourceful. I put sticky notes around my place that said ‘Yes”. They were saying yes to life in so many ways. Then I watched ‘Yes Man’ and enjoyed the message to: get out there, try new things, meet new people and fall in love with life all over again. I was funny and smart. These are the things I want to talk to people about. These are some of the things that I value. Yet just what comes out of my mouth when people ask me how I am?

I guess there is more to me than even I am aware of. I wonder if other people feel it too. Once having a label people are often defined by that label. Is it frustrating for others as well? I guess hearing things and seeing things is a gift and, when I am valued the messages that come to me aren’t  crazy and weird they are simple and nourishing. On the other hand, if I see it as an illness, I receive support from myself and others so maybe at times it’s an illness that needs intelligent and sensitive treatment. Sometimes I’m not sure if I can see the good in this gift anymore. I hope others will help get to know people no matter what difference they have. I hope people will accept their friends, acquaintances and family members as more than a label.”

Written by Friends of Snowflake

About friendofsnowflake

It the way of the spiritual path I have walked many roads…. hear I am with a connection to nature, to God and spirit and currently can’t ask for much more. Poetry nourishes soul and fulfills my spirit working for beauty, opinions and nature in words. I have worked with great seniors and wonderful little ones. I have woken some people with hurt abilities too new abilites. I have been woken myself. This blog is a place for me to write to you to have thoughts find a way to others from my confused head. I would sing them to you but on this computer we must suffice with words.

The Medication guessing games begin

8 EIGHT

     On our first visit to Dr. Y., he spent approximately 30 minutes with us. We told him of Zack’s strive for perfection, his need to be perfect, first at everything, and his OCD tendencies. This led him to believe that Zack had an anxiety problem, which is true, but it is so much more. I have learned through my research that many of the behavioral disorders children have are rarely a single problem, they are usually accompanied by other issues.

DrY. began to write out a prescription, which we reluctantly filled believing it would miraculously give us an even tempered, easy going, and compliant child. This medication was an anti anxiety med. called Luvox.  Dr. Y also suggested we take Zack to a therapist for “play therapy” to help him deal with his frustrations and anger when things are not going smoothly for him. During games, play, coloring, whatever the task may be he would become increasingly irritable and frustrated if everything would not go just as he wanted. For instance if a Lego would not fit just perfect he would get angry and either throw it across the room or destroy it, or if coloring and he went outside the lines he would tear it up. When he played games with friends he always had to win, be first in line, and never get out (like in dodge ball.) If any of these things happened he would loose control, cry, yell and refuse to be out, and erupt into a full blown rage. 

I remember one occasion at the playground when he was about 5 he was trying the monkey bars and kept falling off at a certain point, however he would not give up, he repeatedly tried, even when his hands were covered with blisters until he was able to cross the monkey bars completely without falling, all the while becoming angrier with himself, and more determined, but never giving up. I have found that Zack’s worst enemies are frustration and boredom. If either of these two “bad guys” shows up we are all in trouble.

At the time of starting the first medication he was at the end of the school year of 4k, doing well, never any behavior problems (in school). We had noticed that he was becoming increasingly hyper, moving all the time and fidgeting. Then one day his teacher called and said he was becoming unruly in class and not obeying her, a problem she had never encountered with Zack. This was a sign to me that the medication was causing these problems, a call was made to the doctor and the Luvox was discontinued, and another medication started.

At this time we visited my parents and my mother put me in contact with a friend of hers who always claimed to have had a child very similar to Zack, irritable, angry, defiant, moody, violent, and would rage. While talking to this lady, also a psychiatric nurse, she suggested that Zack could be bipolar, to which I replied “no, he doesn’t fit, I know the definition of the illness and have seen the patients in the hospital, and he carries none of the symptoms.”  Zack was not hyper or manic, he was not depressed he did not talk very fast; he did not go into periods of depression. This very knowledgeable lady then informed me that bipolar disorder in children looks very different than it does in adults. Children exhibited the disorder in different ways such as irritability, anger, defiance, and prolonged rages, all of which did fit Zack.

This information peeked my curiosity so I began doing some research on bipolar illness, specifically in children. The most highly recommended book on the subject was called The Bipolar Child, by Demitri Papolos, M.D. and Janice Papolos. I headed to the library to check it out, to find it had a waiting list, so I waited.

In the meantime Dr. Y started Zack on an antidepressant medication called Zoloft, it too caused his behavior to be worse rather than better and again his teacher called from school. During an appointment with his Therapist we discussed these latest problems, at which time she too suggested I read The Bipolar Child, and especially the information on the various medications. During our conversation she informed me that some medications, especially antidepressants can cause a person with bipolar disorder to become manic, or loose all ability, what little they may have, to control their impulses.

I made the decision to discontinue this medication also, again feeling that no meds were better than the results we were having now.  Dr. Y. thought we should try another medication called Neurontin, an anticonvulsant medication. This was prescribed because some studies have shown it to be used as a good antianxiety agent. Against our better judgment we agreed to give this one a try also, hoping again for a miraculous cure for our child’s rages and behavior problems. At this time we were on our way to the beach for summer vacation with my parents and hoping the new medication would allow us all to have a relaxing and peaceful holiday. Little did we know…..?

     The storm began after 3 days on Neurontin. This turned out to be not any other storm, but a full blown hurricane in Zack terms. The book   had finally come in and I read it constantly during this time, on the ride there and every minute in between, most of the time it was through tears. After reading probably the first two pages I realized what my son’s illness was, without a doubt, the pages described him to a T. Everything t hey wrote, the moods, the personalities, the anger, the mood swings, over reacting to minor things..it was scary. It was like the author was living in our home and writing about Zack. (continued)

Zack and his mimi

The OCD makes itself known

PAGE 4

     Around this age he began exhibiting strange, obsessive compulsive behaviors. As I recall the first one was clipping his toenails and fingernails several times a day, not until they bled, but always making sure they were smooth. He also had a fixation on the toilet seats in the house; they always had to be down. If someone came out of the bathroom he would question if you put the lid down, we would reply in the affirmative, however he always had to go check behind us to see if we really did. Sometimes he would be watching TV and jump up to go check all the toilet seats in the house. Zack would only drink out of certain cups, and eat off a certain plate, shoe laces had to be tied just perfect, not too tight, not too loose. Some mornings we would have to retie shoes 4 or 5 times before it “felt right.” Clothes always had to feel a certain way (and still do), he won’t wear any denim, and pants, shorts and shirts, must all be very soft.  We use to have to cut tags out of everything before he would wear it. Then the smelling and touching of things, he touches everything, and smells just about everything. He is very sensitive to odors, textures, and tastess.

     I am an educated person, not a genius or a doctor, but knowledgeable, with a BS in Psychology. I have worked at a Psychiatric hospital off and on for 14 years, so I was not totally ignorant to such behaviors, but from a child?? Someone had to have the answer, the magic consequence for his rages, and the appropriate punishment for his defiance. I just had not found that person yet. I had to figure something out to help him, to help us!!!

I read every book I could find on childhood behaviors, on discipline, on different techniques to talk to your child, etc…I went to several seminars where famous pediatricians were speaking to hear there advice on getting a child to sleep and on how to discipline. Somewhere, someone would have the answer, since I obviously did not!!!

     I tried every crazy, absurd, and laughable method they all suggested, but to no avail. The rages continued, the sleepless nights, the impulsiveness, the exaggerated reactions, the crazy up and down mood swings.

Looking back now on my choice of professions to enter into, with the abundance of options given to a college student the fact that my choice was that of psychology and mental health still amazes me. I had no idea at the time how vital this education and the work experience I would have would help me to understand and deal with a child with mental illness. One big factor was my mother, who has been a psychiatric nurse for numerous years. Her work at the hospital was always so intriguing to me. I also believe that God, or another force beyond myself urged me into this area, knowing long before I did how vital all of this prior experience would help me to learn, understand and deal with a child with some obvious disability.  During our lengthy search for help with Zack, trying to understand what was wrong, if anything, the social workers, nurses and doctors that I knew from my work were a constant source of information to me, always offering advice, suggestions, and valuable information.

     I can honestly say along with all of the craziness, confusion, and tension in our household, we were able to enjoy Zack during his calm periods. We took great pride in his athletic abilities, he was a natural in any sport or anything that involved movement, coordination, balance or working with his hands.

 At 18 months we gave him a golf club and the very first swing was one of a pro. He handled the club as if he had been playing for years, and could launch a golf ball as far as his father. His father would take him to the driving range with great pride as the other men marveled at his abilities. At about 2 years of age he began riding a bike with training wheels, and at 4 could ride on a two wheeled bike with great ability. He was also capable of building elaborate objects out of legos. This may not sound so astounding but we thought for a 3 year old this was amazing. When Zack turned 5 he began racing BMX bikes and took to this again as a natural, he could ride the track with hills, jumps, turns like a 15 year old. Zack consistently placed 1st or 2nd. Troubles began to occur with this sport because of his huge demands on himself to be perfect; he HAD to ALWAYS be 1st. It was unacceptable to him to place 2nd or 3rd, and when he did a “fit”, and rage would occur, not a pretty sight for other parents or kids to see on the race track. Because of these “fits” we made him stop racing until he could control himself better, and understand that it is for fun, and that winning is not the object of everything. Once that was over, he began just doing bike tricks in the street, he has a jump and would practice all day, and again amaze his friends with some of the things he could do on his bike. cont… (continued)

Some fun links here of a more present Zack

http://www.foxcarolina.com/local-video/index.html?grabnetworks_video_id=4503568 FoxCarolina News interview

http://www.youtube.com/watch?v=M98kK-DAtnQ&feature=player_profilepage Montage :)