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.

The Misunderstood Child

I found this many years ago, and it simply made me cry. It was as if my Zack had written it himself. We, society can not understand behavior that they can not SEE manifesting in a brain. We see bad, unacceptable behavior and assume this is a bad child or a bad person, when sometimes that assumption can not be farther from the truth.

Me and my sweet, and misunderstood boy, Zack

Me and my sweet, and misunderstood boy, Zack

The Misunderstood Child

I am the child that looks healthy and fine.
I  was born with ten fingers and toes.
But something is different. somewhere in  my mind.
And what it is nobody knows.

I am the child that struggles  at school,
Though they say that I’m perfectly smart.
They tell me I’m  lazy-can learn if I try-
But I don’t seem to know where to start.

I  am the child that won’t wear the clothes
which hurt me or bother my feet.
I dread sudden noises, can’t handle most smells,
And tastes there are few  foods I will eat.

I am the child that can’t catch the ball
And runs  with an awkward gait.
I am the one chosen last on the team
And I cringe as  I stand there and wait.

I am the child with whom know one will play-
The one that gets bullied and teased.
I try to fit in and I want to be  liked,
But nothing I do seems to please.

I am the child that tantrums  and freaks
Over things that seem petty and trite.
You’ll never know how I  panic inside,
When I’m lost in my anger and fright.

I am the child  that fidgets and squirms
Though I’m told to sit still and be good.
Do you  think that I choose to be out of control?
Don’t you know that I would if I  could?

I am the child with the broken heart
Though I act like I don’t  really care.
Perhaps there’s a reason God made me this way-
Some message  he sent me to share.

For I am the child that needs to be loved
And  accepted and valued too.
I am the child that is misunderstood,
I am  different-but look just like you.

Author – Kathy Winters

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.

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.

My son has Mental Illness, but he is winning the battle, and spreading hope along the way

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  I pray daily that he will get better and that his life will be one of joy that he remembers. Not the rages, not the crying, not the teasing or the daily chaos and screaming because his shoes feel funny, or he can’t do a stunt on his scooter, or whatever the catastrophe for the day may be.  I pray he will be a strong, independent, self sufficient, loving and caring person. I pray he will always know how much his mom and dad love and adore him, regardless of his tantrums and anger at times. I pray he will always know he can depend on us to help him, love him and do what is best for him.

Zack with sister before Prom

He is such a loving and caring child, so sensitive and loyal. He adores his sister, his family, his dogs and friends. I pray one day that person will come to stay and the demons will forever fade away. I pray that I will always be strong enough to support and help him, to be understanding when need be and tough when the times dictate.  I admit I am scared, terrified of what his future may be. I am so afraid he will grow up sad, depressed, lonely, and self loathing despite our best efforts and despite any new treatment that may come along. I want so much for him, for both of my children to be happy people, to enjoy life and enjoy the gift that is life. I want to grow old with them and enjoy them as I have enjoyed growing up with my parents.

My heart hurts daily when I allow myself to think about what his future may be, and what I pray it will not be. I only hope with such early intervention he will have the best possible scenario living with his challenges.

   I do not allow his problems to be an excuse for his behavior, for the mean, nasty and rotten things he can and does say. I do however believe it is an explanation, one some people may not believe or accept. I, on the other hand know who and what the real Zack is. He is a charming, bright, funny, charismatic, loving child who gets lost at times. He is my heart, my love, my life. He is a treasure and a blessing, regardless of any difficulties

We are so lucky. On days when I feel like maybe I am not strong enough to raise this child, and when it gets too stressful, I remember how fortunate we are. So many people have far worse circumstances, and huge obstacles to overcome.

My mother made a print for me that sits at my bedside that says it all so clearly for me. It reads:

                             No child is an accident, for every child is given to the mother God intended.
 

     I do believe that.This child has made me such a better person, a stronger person, willing to stand up for truth and what is right, not backing down when I know something is wrong, being determined and persistent, never taking no for an answer and never giving up. I would not be this person I like if not for him.

2009 Update: Zack has been involved in a year-long Clinical trial with the National Institute of Mental Health for pediatric patients with OCD, who have been unresponsive to traditional meds, as he has. We were flown to their campus bi-monthly in Bethesda Maryland. This has proven remarkable for him it has not only helped his OCD but his depression and anxiety. I finally got him placement in the proper classroom setting called LD Neuroscience for kids with neurological disabilities at the end of the 2009 school year. After a long almost 3 year battle with the school district.  This proved to be a great move for him and he was able to bring up all grades to A/B honor roll as well as regain some self-esteem and dignity. He has also been working closely with some great therapist that come to the home several times a week.  He has more stable days than not,something I was not sure would ever happen for him, for us.  There are still some rocky roads, chaos, unstable times, but they are not as frequent. God is good.

2010 update: Hillcrest High School for 1 (this is the second) years now, another bumpy, shall I say Mountains to climb. He has not been very stable, spent a lot of time home and taught at home as his functioning declined so while in school. As is the case with illness of the mind days are counted minute by minute.

2011: I can say now, after a very rough start to the 2010 school yr, we found a medication that is helping the real Zack shine once again. It is HUGE. School is not calling me daily. REALLY HUGE !!  He feels good,”normal” he says for the first time ever. He  has some goals in place, driving and spending as much time with the church as he can. Playing basketball on the church team and going on outings.  Oh, and the launch of GoodBoyRoy last January, also such a wonderful way for him to show his Gift and talent. He has enjoyed seeing people wear his fun designs, the cool t-shirts for cool kids.

It has been wonderful to see his self-esteem slowly appear. So, we stay hopeful and optimistic in that he will have all his dreams come true (the “hot wife and 3 kids”) as he says, his own cartoon series and Good Boy Roy to be known world-wide.  One thing will never change, the love we have for him, the courage he has, the wonders I know that know that await him, and that I will never give up on him and always believe in his abilities. He is now, (2011) the most stable for the longest, consistent time he has been in his entire life and it has been the best gift for us to be able to enjoy him and he to enjoy himself.  He does still have quite a bit of anxiety, brain lock and frustration, but it is manageable for him, and for the most part not becoming overpowering in the classroom. I am daily thankful for this time, for his happiness and for being blessed with this dear, wonderful boy.

2012 update: As expected stability is only short-lived, school is a challenge, a constant roller coaster of trying to maintain, keep up, manage. He is sent home often, I am “on call” at all times, required by the school. His mood swings a constant mystery. He is driving, yes, he passed his driving test.

Many question his ability to drive, is it safe, is he safe. We felt like driving would give him one more achievement to add to many that help him feel like a regular kid, and knowing that HE is aware of his moods, not driving when he is frustrated. We found him a cute little truck and bought if for his 17th birthday. It really looks like it was made for him. Each day as I see him in it I am still so amazed that he can, and does, and this is my baby, growing, learning, overcoming.

Good Boy Roy continues to grow, bit by bit, as we continue on this dream and hope of making it a household name…a mix of The Simpsons and Life is Good. Some great Media has come his way, really too many to mention here, but one of my favorites is this article in Town Magazine

So, as always, living the life we do, loving a child with so many complicated issues, we live not one day at a time but one minute at a time. Let go and Let GOD.