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.

For my Daughter…you are my Sunshine

For my daughter who has been through so much. For my daughter who has had to have her life, needs, wants often put on a “lets wait” status. For her, and so many other siblings of special needs children who so often feel unimportant, or a bystander in their family and life as the constant needs of their siblings are met. You are all the unsung heros.

kelsie1stbday

You are my Sunshine
You are my Love
You are my heart
You are my Joy
YOU are MY daughter

The day you were born is when my life became complete.
The day you were born, my heart was full.

Zac and Kelsie

The pat of your sweet hand on my back,
The sound of your sweet voice,
The soft breathing as you slept,
Food for my soul

Eyes Bright, big and beautiful,
Sparkle with wonder and delight.
A smile that reflects the beauty
Of you

beachkelsie

Your years filled with trials,
Your days filled with questions.
Your heart trying to find its way

Your heart never to be broken,
Your life to be never ending joy.
Dreams that come true
All my hopes for you

Your strength I admire.
Your Character I am proud.
A spirit I enjoy
With beauty beyond compare

713679342_Y84Ax-M kels

To know you is a pleasure.
To love you a joy.
To be your mother, a Blessing
For you to love me,
A Gift

I hope all your dreams come true.
I know you will be Amazing in all you do.
I am certain you will soar
I Believe in You !

You are my Sunshine
You are my Love
You are my Heart
You are my Joy
You are MY Daughter

713762581_WAX9X-Ti k and k

My Pity Party

I am posting after yet another episode of hell here due to  raging and lack of impulse control and inflexibility of my 17 year old son. Pardon me, or not, if this is really raw.

These episodes happen usually as a result of something very minor.

Really. Minor.

Today he was set off because his younger sister asked to watch her “show” on the main TV in the den, where he was watching a show.

(background) the show he was watching he has seen several times already, and has recorded, so he can watch any time. The show she wanted to watch is only on the Netflix channel, that she usually watches in the upstairs play room which seems to run cold.

So, she asked could she for once watch her show downstairs and he could finish watching his show when hers went off. Sounds simple enough. Right??
Wrong

For a child who has a brain like concrete and NO flexibility in his thinking at all it is impossible to “switch gears” like this.
I asked him if he would help me out, and let her watch her show, and the standoff began between him and her.
The showdown began.
He becomes more and more agitated, as does she, name calling begins. So, since it seemed like he was not being agreeable to something I thought was not a major request, I told him he had to let her, for once, watch in the den, especially since his show was recorded AND he has seen several times already. I hoped for a miracle of agreement. NOT

The Rage begins.
Oh, did I mention a plumber was at the house doing an emergency plumbing job? It usually happens this way. So, outside our house, the plumber can hear my 17-year-old son screaming, like someone is killing him. Along with him yelling at his sister, them chasing each other and the total chaos going on. (while I am outside trying to talk to him about what the problem is)poor guy is looking at me with some concerned expression as he is hearing all of the commotion from inside. I just calmly say..”that’s just my 17-year-old unhappy because he didn’t get his way”

The next thing we  hear is  a bang on the front window, above where we were at the source of the plumbing problem. As I look at the window I see that my son has hit it, and broken yet another set of blinds.

Oh well, par for the course here.

Things are always getting broken during his rages.

Throw in this mix of madness my husband just left again for out-of-town business trip for a week. And I am here, as always, dealing with the chaos alone. Trying to get two kids from killing each other.

As I enter the house, my son is crying and sobbing like a 4-year-old (again, usual behavior). I wonder, will this ever get better?  Will He ever get better? Will he ever mature enough to someday be independent? Ever? I give up.
We had a beautiful new house 6 years ago that now looks like a place of destruction because of all the holes he has made in walls (during rages). Fortunately I have become pretty good at plastering and re-painting them. Yet some I just leave, the ones where he slams a door so hard it puts a whole in the wall where the door knob hits.

I am feeling so, so, hopeless, worthless, not caring anymore, giving up. My pity party begins.

We live in constant upheaval, the house always needs repair, when we try to get ahead financially something always breaks or needs to be fixed. It’s never-ending. Now, I know, we are not alone. Not by a long shot.

But I am thinking, why?? I’m a good person. We are good people. I pray, am faithful, as does Zack. Poor kid prays everyday for GOD to help him get better. For him to feel and act better. Nothing, no peace comes to him or us. Many days we feel lost, unheard. And he asks, often, why did GOD do this to me? Why am I like this? Why wont GOD answer our prayers? I don’t know. I just don’t know.  My heart breaking, again. His doctor is fantastic, but medications usually only bring stability for a brief time. Never long enough.

This business of Good Boy Roy I have been diligently working and trying to grow for 3 years now, for him, to be his future, seems to be going nowhere. Or, should I say, not where we hoped it would be by now. This too makes me feel like a failure. I think to myself, if I was better, smarter, more business savvy it would be a National brand by now. If only I could do more. He will not, I am sure, be able to work for someone else, on their terms or time frame, but will need to work when he is emotionally and mentally capable. Which was the reason to start the business. People with the extent of neurologically based challenges that he has need great flexibility. So, we plug along. Living our life. Hoping. Praying.

I go about the usual business of cleaning up whatever destruction is left. Trying to gather my nerves most of all. Waiting, hoping, praying he will calm down soon. Hoping, praying, my daughter will somehow grow up to not hate her life or her brother, but somehow understand he is sick, and not purposeful of most of his actions like this.  He has been under constant medical care since about the age of 4, with tests run, EEG, Cat scans and the like, which show total disorganization in his brain. The cause of his multiple diagnosis, OCD/ADD/Depression/Anxiety/Tourette’s (caused by a strep infection in 5th grade) and 3 head traumas.

As I continue on my pity party, I as always, am thankful for what we do have. Thankful for what my son has accomplished and what he can do. He is a loving, sweet boy, as long as he is stable. But the inflexibility rarely, if ever, gets better. We have much to be thankful for as so many have lost children, lost loved ones, devote lives to children who are unable to even feed or bath themselves. Yes, a midst the turmoil and chaos, we are lucky. Very lucky.

Pity Party over.

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

The Princess arrives

PAGE 6 SIX SIX SIX

Kelsie Elizabeth Hix arrived in our lives on October 24, 1998.

A beautiful baby girl, the result of a smooth, uneventful delivery.

No forceps, no suction.

 Zack adored his baby sister. He did not have any jealousy issues that we were afraid of. I have admitted this to very few people, but I was so fearful of having another baby boy. We did not find out the sex during either pregnancy, so it was a surprise when the babies were born. I told myself during my pregnancy that it did not matter if it was a boy or a girl, either would be OK, but secretly I prayed for a daughter; for fear that I would have another boy that acted like Zack.

When Kelsie was delivered and they announced “it’s a girl” I cried out of joy that it was not another boy. Hard to admit to myself because I love my son, I adore him, but he was so hard to live with, so hard to handle, so hard to be around most of the time. It’s a terrible thing to be a mom and say “some days I don’t like being around my child”. Especially when you love them so much, and when they can be so charming and loving, and when no one else sees that side of them (the difficult side).

I told very few friends of his behavior. Most of them would find it hard to believe.  It is really hard to adequately explain all the things he did and how he would act. After some of his rages I would have bruises on my arms and legs from where he would pinch me while I was restraining him during a rage. I’m sure many people thought my husband beat me, and at times I felt like I would rather them think that than to know my 3-4 year old did these things to me. I know everyone will say how can your child do this, you can’t allow it, but what could I do??? I would try to restrain him, but somehow he always managed to grab a piece of skin, then what could I do? Tell him “you don’t hurt mommy” then spank him??

I was so conflicted over this, and still am.

I don’t have anything against spanking, but to tell a child you don’t use violence or hurt other people, then hurt them, I could not make sense of it. Don’t get me wrong, Zack has had many spankings; however they are all a waste of time because he doesn’t learn anything from them. They don’t stop him from the behavior he is being spanked for, it just happens usually when I run out of things to do, when I am all out of consequences. I have learned that consequences for kids like Zack don’t work. They do not respond to the typical positive or negative reinforcement. Their inability to see past the current moment greatly inhibits their reasoning.

  Zack is a child of such conflicting and contradictory emotions and moods, he is the most loving, kind, charming and fun child you could meet, then turn on a dime to be angry, hateful, disrespectful, all within a few minutes of time.

He can be so full of personality.

One example is of a birthday party he went to with older kids, maybe 4-5 years older, and upon picking him up the father and mother came to greet us and said “we just wanted to shake your hand. Zack is the coolest kid I have ever met.”, and he is. He is the coolest kid I know, and I know that sounds bias coming from his mom, but he really is, just so cool, so witty, so funny. However, as always, everything is relative when we talk about my Zack, he is all of these things when he feels good and most of these things even when he is in a bad mood, but many days the anger and irritability take over and the real Zack gets lost somewhere. When the bad days take over he seems to be aware, however unable to control his mood. He is either yelling, or crying and will make statements like “I’m such a dummy,”  “nobody loves me,”  “why am I so mean?”, “I’m stupid”, “you hate me”, “kill me”.  Heartbreaking for a parent to hear.

We now had another reason to aggressively seek out help for Zack, and for us. With every rage every defiance we knew it was affecting our newborn daughter. She deserved a good life, a stable and calm environment to grow in. Kelsie, thankfully, was a wonderful, easy baby. We often joked she was like not even having a baby she was so quiet. I really don’t think she cried until she was 6 months old. She would nap 6 hours a day and sleep all night. I could put her in a swing, on the floor, in the playpen and she would be content wherever she was, and this was such a blessing because Zack was still taking up most of my time. I would take her out to the malls on days Zack was in mother’s morning out and she would sleep the entire time, many times I thought I had left her somewhere because she never ,ever made a sound in the car. No two children could have been more different. (cont)

Kelsie and her dog Poncho

Looking for help

Page 3

     When he was about two and a half I began seeking professional help. I hoped someone would be able to give me some magic remedy, some specific answer to help Zack to act better. There just had to be something I was missing.

I first talked with his pediatrician, then a couple of therapists and psychiatrist, all of whom told me the same thing “he is just temperamental, high-strung, normal, testing his limits. Just be consistent and firm.” I felt so helpless and frustrated, they just did not understand. I knew children had temper tantrums, but not ones that go on for hours and hours and several a day. I was consistent, I was firm, but NOTHING stopped him from these rages. I left each visit more determined to find an answer, one that they must not know of yet.

During a rage when he was 3 years old he busted a hole in his door by ramming a Little Tikes plastic rocking horse into it. This is  was just the beginning of many holes he has put into various doors and walls in our home. It is hard to explain, but he has no control, he just throws things, whatever is in his way he will kick, punch, hit, or throw. It is equally easy to see it is not “him”.  He changes when he is like this, his whole appearance is different.

     It was always a battle. I would say “you can stay in your room with the door open but don’t cross the carpet line until you calm down”…he of course would come out, only to be put back in the room with the same instructions and he would again step out. This would continue for at least 2 hrs at time, the same instructions, the same consequence, until finally I realized “he isn’t getting it!!” He can not see that what he does will result in a consequence, all he can “see” is what is in his mind at the moment.

      He began hitting me when he was angry. I would try to discipline but to no avail. I would say “you do not hit mom”, try time out, which never worked and no consequence ever prohibited his impulsiveness. He would just strike out, when he was that other boy. He was smart, very clever. We turned his door knob around on his bedroom door (something I read in a book) to keep him contained during his rages. Well, my little genius could always find something to pick his lock with.

Zack would wake up some mornings screaming, for no reason,  just screaming!!!   He would have “the look” that glazed over, somewhere out there look. We never knew what was going to happen next. We were on constant alert with him; he was either loving us or hitting at us and screaming. When he woke in the mornings we always held our breath until we could see his face to know what the mood for the day was. Zack’s facial affect changed with his moods, he had a certain “look” when he was in a bad mood, it was clear he was not himself. He had a more pleasant, relaxed and brighter eyes when he felt “normal”.

     To see him, this beautiful boy, big,  bright eyes, funny,silly and smart,no one would even begin to imagine the devastation and pain he was living. We were living. When he was Zack, the real Zack, he was delightful, witty and a joy. The reality of our life was unfathomable to outsiders.

Our house was total chaos, it seemed at all times.  During one of Zack’s lengthy rages, and screaming fits I heard sirens, sounded like a fire truck or police car, my imagination began to run wild. I thought a neighbor called DSS (dept. Of Social Services) to report me for child abuse.  I would not be touching him, he would just scream for hours at a time with no letting up, and who would believe me?

(page 4 tomorrow)