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

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)