Siblings and Aggression

When a child has a mental illness it is often very difficult for parents to accept.  Struggling to find the right ways to help a child means a myriad of therapy appointments, doctor visits and sometimes hospitalizations.  All of this can be even more difficult for single parents/caregivers and households where both parents work.  Having more children in the mix can be the most difficult thing of all, as the effects on the other children are imminent and most times, very detrimental.

I can remember back when all of the aggression/meltdowns/restraining behavior started.  It was early 2008 and my son had just turned ten.  There were countless episodes of screaming, crying, throwing things, wrecking his room and becoming aggressive without provocation.  Most prominently in my memory is the memory of my daughter, just seven, rounding up her littlest brothers, just three and one and a half, to hide under our big kitchen table and be safe.  The thought of it now still brings tears to my eyes.  There is just so much burden.  Things that little children should not experience or know about or have to deal with at such a young age.

I have watched my bubbly, sweet daughter, always full of wonder and excitement, collapse in on herself in fear, grief and depression.  There were many times she slept with her door locked because she didn’t know if her brother might come in and harm her.  She watched as the brother who used to love her and play with her became dark, brooding and mean.  It is an experience that I wish I could have spared her.  She has far too much responsibility much, much too early.

My youngest sons have never really gotten to know their brother as he existed when he was younger; kind, always wanting to play with others and excitable.  For them, they have experienced the moody, harsh and angry brother who was always more ready to cause them harm because he was annoyed with them than anything else.  Not surprisingly, it has not made for a good relationship for any of them.

Yet, the transformation my oldest has gone through is not his fault.  He certainly didn’t “choose” to have a severe mental illness, and more often than not in these long years he has told me how he’d like to be “free”.  For many of the years between age ten and thirteen, his desire was to end his life.  It came up nearly every day and back then I was told by one respected therapist that it was “for attention.”  I’m here to tell you today that the therapist was WRONG, on all counts.  I’m glad that I trusted my gut and kept working toward getting better and better help for my son.  It wasn’t easy at all and took far too long, but if I hadn’t kept believing we could find help, my son might have tried to kill himself much earlier.

When my second son began having similar difficulty at age six and a half, the cycle began again and the difficulties became even more overwhelming for everyone.  This  round put my daughter in therapy and we spend some time in family therapy as well.  There is always work to be done, and a lack of resources available. Mental health support in America is slim to nil.

Days for me are still spent as mediator and referee, anticipating difficulties and intervening before any harm comes to anyone.  It is a very tiring, difficult pursuit.  Being hyper-vigilant and hyper-aware sixteen to seventeen hours a day is nothing short of exhausting and stressful.  Unfortunately, it is necessary.  When I feel like complaining about it, I try to remember that the casualties are children I adore, and I don’t want to see them go through any more than they already have, so I will continue to do what I need to do, for them.

When I read this article on siblings and aggression done by the Maple Clinic in Birmingham, I thought, “Finally!”  While I’m glad they are shining some light on the issue, it certainly isn’t telling those of us in the mix anything we don’t already know, but hopefully, we can get the professionals and the government to wake up to the needs of the families affected by mental illness in America.

Peace,

Jenifer

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Working With Psychosis

When my son began hearing voices, I wasn’t absolutely sure it was happening.  I had suspicions, but that’s all they were at the time.  It started back when he was six, and at first, it was very simple things, like, “Mom, did you call me?”  Now, that wouldn’t normally have made me suspicious, but when it began happening many times a day, I was wondering what was going on. Then, there was the habit of always glancing upward.  These were just small clues, and at the time, they didn’t amount to psychosis to me.  Honestly, there is a moment in time where I can distinctly remember things beginning to change, and change they did, in some very disturbing ways.

As homeschoolers, we had always had many homeschooling friends.  In the early years, we were very close to one particular family.  My son was four, my daughter was 18 months, and their daughter was three.  For a two and 1/2 years, we were inseparable and did life together.  The relationship was great, all the kids got along very well and there was very little, if any, fighting or disagreements.  Then, a few months before my son turned seven, everything changed, overnight.  One day, we were over at our friend’s home and my son was sitting at their table absolutely refusing to do anything with his sister and their mutual friend.  I tried to get him involved, thought maybe he was just not feeling well.  Then, something very unusual happened.  I had given him some paper to draw with while he was sitting at the table because I didn’t want to ruin the girls play date.  When I came back to the table a few minutes later, I saw he had drawn a picture.  He was very intense and I looked at the picture and it was a picture of a girl with red all around her.  There was a piano falling from the sky in one frame and it landing on her in the second frame.  His body language and demeanor were very ominous.  I cut the play date short and said that I needed to go home, my son was not feeling well.  Over the next few days, there were more pictures, each one more disturbing than the other.  He also had begun an intense dislike and grudge toward the girl, as well as his sister.  After this time, my son began a strange fascination with violence and reading everything he could get his hands on about war.  He began to see dark, ominous shapes in corners and violent episodes began regularly at home.  This period of time lasted a long time and was only made a little better with some very heavy medications.

When my son was 13, at dinner one evening out at a semi fast food restaurant, my son privately told me that there was a “book” in his head that told him to do things.  When I asked him to elaborate, he gave me an explanation that was very muddled and confused.  The gist was that the “book” was an evil thing and it “suggested” he do certain harmful things.  He said the book was very powerful and it bothered him.  This was the first verbalization I had ever had about anything going on inside his head, despite years of therapy.  A week later, my son started his first week of school in the public setting.  Six days later, he attempted suicide.  He had a major psychotic break and spent 42 consecutive days in a mental health hospital.  During this time, more and more information came to light. Over the years, we had many trials of many medications. In the hospital, this time, after a med wash, we agreed to try Clozaril after some very disturbing events and because it has been proven to reduce the recurrence of suicide attempts (our son had pulled knives out of drawers in the past and threatened to harm himself, as well as relayed to us that he wanted to kill himself several times). The first medication to actually work for my son has been Clozaril, generally thought to be a “last resort” medication for those who have not responded to other medications.

Psychosis can come on gradually or abruptly.  The more gradual the onset, the poorer the outcome is, generally.  This was not good news.  The earlier psychosis begins is also an indicator that outcome will have a poorer response.  However, we are a family that always holds out hope.  There are new strategies, more research and different avenues being explored all the time.  Having our son respond well to Clozaril has been a huge blessing, but it is a dangerous medication, too.  Clozaril can cause: Agranulocytosis (Less than 1% of patients taking clozapine may develop a condition called agranulocytosis, Agranulocytosis causes the body to make fewer white blood cells. A decrease in white blood cells increases the risk of infection. If this occurs, it is reversible by stopping clozapine.)  It also can cause Tardive dyskinesia with prolonged usage (uncontrollable tics).  Those are just a few side effects, there are several more.

With new strategies, like the development of Avatar Therapy, we have hope that more can be done, earlier, to help those who are suffering from psychosis, especially children.

Blessings,

Jenifer

Internalizing disorders

I had actually intended on writing something else today, but this has been at the forefront of our lives for quite awhile, so I think this is the post for today.

Both of my boys are heavily internalizing.  This presents many challenges on many fronts.  One of the biggest issues that face my boys is others (including therapists and psychiatrists) not understanding what is really going on.  Internalizing tends to not be “believable”.  By that I mean, when others don’t “see” it, they assume it doesn’t exist.

When psychosis, processing deficits, anxiety and other traits are present, there is a good chance all of that will be internalized rather than externalized.  Many kids have a combination of both internalizing and externalizing behaviors, but those who are heavily internalizers do not often present as “behavior disordered” in public settings, generally.  They reserve all of that behavior for the safety of home (and family members).  One of the reasons that the family dynamic is so difficult for those with bipolar disorder/schizophrenia and the like is that most of the chaos and bad behavior occurs at home.  This also leads to “blame” in the form of others criticizing parenting techniques, manners, etc.  The reality is that when kids are able to “hold it together” in public, it ALL comes out at home.  This stress on the family is overwhelming for the parents, siblings and the child with the issues.

Imagine this scenario: Child A with X illness has had a “wonderful” day at school.  According to the teacher they displayed “model” behavior in the classroom, had fun at recess, ate their lunch appropriately and did all of the required classwork.  Perfect.  Then, said child comes home.  You ask how their day has gone and they say, “fine.”  Little brother walks into the room and says, “Hi, Child A!  Look what I made for you with this play-doh!”  Child A turns around and sees the creation and pushes little brother over, screaming, “Why did you use that Play doh!  I was going to use it to make something special for Dad!”  To a parent of a child without a disorder, it looks like just absolutely unacceptable behavior.  While I won’t say that the behavior is acceptable, I have had experience with why this occurs.

What the teacher didn’t know, or see, was that Child A had a very difficult day.  The classroom, at a certain point, was very noisy and it induced some sensory overload.  It took an inordinate amount of concentration to keep Child A focusing on their work and not reacting negatively to the excess stimuli.  When a small argument broke out with two classmates that took up quite a bit of the teacher’s attention and distracted the class from a favorite exercise, Child A’s frustration was rapidly growing.  In order not to become a behavior problem too, Child A ripped a piece of paper over and over into pieces to keep calm.  When another child having a bad day was frustrated and crying excessively, Child A’s anxiety grew and it took a large amount of energy to keep calm and not start crying as well.  During practice in one of their more challenging subjects, Child A’s processing issues were making it hard to do the work properly, which made Child A angry.  Instead of showing the teacher anger, Child A said they had a stomach ache and spent a large amount of time in the bathroom.  During recess, Child A couldn’t find anyone to do the same thing they wanted to do, so Child A spent time alone on a swing and felt very lonely and sad.  On the bus ride home, Child A was so tired they fell asleep and the bus aide got angry when it took too long to wake Child A up.  Child A arrived home thoroughly done with a very trying day.

Children with internalizing disorders often have days like this. Sometimes, every day.  When they are non communicative or non verbal, it makes it all the more difficult to be helpful.  This is a perfect example of, “what you see is not often what you get.”  There are educators, professionals and administrators out there who refuse to acknowledge that this exists.  I know because I spent months and a lot of money battling some.  I have spent the better part of eleven years dealing daily with internalizing disorders in my family.  It is chaotic, overwhelming, sad, difficult and exhausting.  What families need most is support and to be heard and understood.  This is not always readily available or an easy task.  Online forums available for families of children with mental health challenges can be helpful.  Sometimes just having a willing ear is enough.  Other times, respite is necessary.  Some mental health agencies have mentor programs which are very helpful.  Local NAMI agencies have groups to attend that are helpful, and http://www.thebalancedmind.org/ is a great forum to relate with other families going through similar challenges.

Peace,

Jenifer

Welcome!

This blog is for everyone.  It is written from personal perspective and experience and directed to mental health consumers, siblings, parents, friends and other family members of those with childhood mental illness.  It is also written to educate all those who come into contact with those we love that suffer at the hands of any mental illness.  This life is not for the faint of heart.

In this blog, I hope to help others advocate for themselves by providing resources, answering questions and providing perspectives to a very large and complicated set of issues.  To anyone who reads this, please remember that I am not a medical doctor, a psychologist or psychiatrist.  However, that in no way means I’m not an expert in a sense.  I have filled my life with countless experiences, reading (medical journals, articles, books and studies) and advocated for my own family through several hardships.  I hope to pass on a little of my “expertise” so that others can benefit from what I have learned, hard won as it has been.  

One thing I can say for sure is that WE are strong, together.  All parents, caregivers, guardians, must stand together to advance the cause of advocacy for the mentally ill. 

Namaste.

Jenifer