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.

School for my Special Needs Child, predictably Unpredictable

Today Zack is 17, in the 11th grade, and in regular education classes. This has taken place after years of being in a LD Neuroscience classroom (Learing disabilities neurologically impaired), with many accommodations. Yet, even with so many accommodations, school is still incredibly difficult and uncertain. We have been very fortunate that he has the most amazing, loving, caring teacher I think that was ever put on this earth ! We nominated her last year for the Golden Apple Award, a honor given to teachers here in the Greenville County School District. She was chosen based on the essay we submitted about her and the wonderful care, love, and education she gives our children. Here is the clip from that broadcast (yes, that is me the sobbing, blubbering fool) . My emotions were so high becasue this precious young lady has been such a HUGE gift to Zack.

Transitioning from a self-contained classroom into regular education classes has been, well, touchy at best. Zack still has many accommodations in place and is able to go to the self-contained class if he needs to, which is often. He is unable to tolerate or manage any kind of frustration at all, and quickly escalates and ends up “shutting down” completely most times.

As his mom, I am required by the school to be “on call” at all times in case I am needed there to help with him, which is often. But, that too is all so unpredictable, depending on his stability at the time. I may have a week with no calls and not have to go to the school, or I may get multiple calls a day. Navigating the schooling of a special needs child is a daunting task at best. The only thing you can count on, that we can count on is that he is, each day, Predictably Unpredictable .