Saturday, December 31, 2011

Starting Over

Finding out your child has been diagnosed as having paranoid schizophrenia is a bitter pill to swallow. On the up side, I guess, is that we now know why she's been having such a hard time.

Since my last blog entry I can thankfully say that we have found a psychologist for Kaitlyn and she has her first appointment on January 9th. I also got her on a waiting list at the pediatric/adolescent psychiatric hospital to start seeing one of their female psychiatrists. I was told it would probably be about 2 months before we would be able to get an appointment. My reaction was, "Really? Two months? That's all? Having the doctors lined up (well nearly anyway) is a giant burden lifted. 

Kaitlyn's medication is helping, but she is still having a very difficult time in some other areas relating to her illness. Anxiety and paranoia are still pretty intense. She also has a very hard time coping with frustration and anger. She has zero distress tolerance right now. When she gets upset, it can sometimes seem like the it's irrational and why should she be that bothered by whatever it is? That's when we have to remember that she can't rationalize and tell herself it's not a big deal. She can't be told and understand from someone else that it's not a big deal. To her it's the biggest deal in the world, she can't do anything about it and she can't control her reactions. I suppose that sounds like a tantrum and to an outsider that's what it would look like. A spoiled child wanting her own way, making unreasonable requests. In actuality that is NOT the case. 

I have a difficult time knowing when to say things and when not to and the best way to go about addressing the situation. How do you parent a child who has almost no coping skills and can't be reasoned with? It's one thing when they're babies or toddlers, but with a child that's nearly 12 you should be able to explain why this or that are unacceptable behaviors, or make him/her understand that her sibling is only doing what's normal, acceptable behavior for their age, right? For the average child, that would be a big fat yes. But not for this special child of mine.  

For years we thought that Kaitlyn was oppositional and stubborn and that we weren't being good parents. Her emotions can change like the flipping of a light switch, and they can be so extreme. We got so frustrated ourselves we just came to the end of our rope. We kept asking ourselves what we should be doing differently, and were we doing ANYTHING right? Turns out we were doing quite well, for the typical average child her age. Unfortunately we were dealing with something we weren't prepared for, and it wasn't until last month that we found out what it is. Now we are feeling our way along, reading what we can, and trying to figure out what works best for Kaitlyn. Our old parenting style has had to be tossed out the window. It's a bit like becoming a parent for the first time all over again. The rules we were playing by before have all been changed and we don't have the new one.

Mental illness and depression are difficult for people to understand. If you aren't close to someone who has it, you will probably never really grasp the magnitude of it's impact on a person's life. A positive attitude isn't going to change it. In fact, there is something physically wrong, it's just on the inside where you can't see it. It affects the brain and emotions. It is much easier to accept a disability you can see.

There isn't nearly enough awareness about mental disability and depression, so the stigma attached to them remains. I encourage you to read about it, do a little online research just to educate yourself a little more. Much of what we think we know and understand about schizophrenia (since that's what my family is learning to understand), is myth or misconception.

13 Myths of Schizophrenia

Schizophrenia is one of those mental disorders that many people seem to confuse with something else, such asmultiple personality disorder. It’s a very simple yet very terrifying condition, characterized by usually having a combination of hallucinations and delusions. Hallucinations can involve any of your five senses, but in schizophrenia, usually involves seeing or hearing things that aren’t really there (like hearing other people’s voices inside your head telling you to do something you don’t want to). Delusions are a false belief in something, such as the CIA is out to get you.
Many of us hear voices in our heads, but usually it’s our own voice acting as our conscious (“You really shouldn’t eat that second piece of cake!”). That’s not schizophrenia. And many of us believe in something that isn’t true (“Life is fair.”). That’s not schizophrenia either. The symptoms of schizophrenia need to be serious and significantly impact your daily life.
Regular contributor and author of the blog Weightless, Margarita Tartakovsky, has put together 13 myths regarding schizophrenia. Here’s the list of common myths about schizophrenia:
  1. Individuals with schizophrenia all have the same symptoms.
  2. People with schizophrenia are dangerous, unpredictable and out of control.
  3. Schizophrenia is a character flaw.
  4. Cognitive decline is a major symptom of schizophrenia.
  5. There are psychotic and non-psychotic people.
  6. Schizophrenia develops quickly.
  7. Schizophrenia is purely genetic.
  8. Schizophrenia is untreatable.
  9. Sufferers need to be hospitalized.
  10. People with schizophrenia can’t lead productive lives.
  11. Medications make sufferers zombies.
  12. Antipsychotic medications are worse than the illness itself.
  13. Individuals with schizophrenia can never regain normal functioning.
Schizophrenia is usually a life-long disorder, and one that makes having what most of us would consider a “normal” life challenging. It can be done, but it requires a commitment on the part of the person with schizophrenia, often with the support of their family. While not common, it is one of the most disabling of the mental disorders — and the most misunderstood.

Kaitlyn is a very bright girl, and we see so much promise in her. It's so difficult to think that she may not ever get to be the chemist she wants to be. She has goals and desires just like you and I. She is funny and can be so very caring and helpful. The most important thing we can do right now is to show Kaitlyn how very much we love her just the way she is, without hesitation, reservation or expectation.

Little by little, step by step, making my way every day.

Monday, December 19, 2011

Warning: Sensitive Subject Matter

The subject matter being covered today is highly sensitive, but not inappropriate.

Remember we took Kaitlyn for a neuropsychological evaluation at the beginning of November?At the time of my last blog we had completed the evaluation process and were waiting for the doctor's report and diagnosis.

On November 9th, the psychologist who performed Kaitlyn's neuropsychological evaluation called and gave us her diagnosis. Kaitlyn has Very Early Onset Paranoid Schizophrenia and also Depressive Disorder. This came as a complete surprise to us. After reading through Dr. Bennett's report and doing some research on our own, we are starting to come to terms with her diagnosis and to understand what this all means for us and more importantly, what it means and will mean for Kaitlyn.

1% of the world's population has Schizophrenia. Of that 1%, only 1% of those individuals are under the age of 13 (Very Early Onset Schizophrenia or VEOS), which means that it is very rare. It is even more rare in instances such as ours where there is no family history of Schizophrenia.

Below is some information on Schizophrenia that I found online to help you better understand what we're dealing with. As a non-professional it's difficult to explain, particularly when you're in the early learning stages yourself. I have included the link to the site in the event that you want to learn or read more, and to be sure that the appropriate people are credited, and have copied and pasted the most basic information below.


Childhood-onset schizophrenia
Last reviewed: February 7, 2010.
Schizophrenia is a complex mental disorder that makes it difficult to:
  • Tell the difference between real and unreal experiences
  • Think logically
  • Have normal emotional responses,
  • Behave normally in social situations

Causes, incidence, and risk factors

Schizophrenia is a complex illness. Mental health experts are not sure what causes it. However, genetic factors appear to play a role.
  • Certain environmental events may trigger schizophrenia in people who are genetically at risk for it.
  • You are more likely to develop schizophrenia if you have a family member with the disease.
Schizophrenia affects both men and women equally. It usually begins in the teen years or young adulthood, but may begin later in life. It tends to begin later in women, and is more mild.
Childhood-onset schizophrenia begins after age 5. Childhood schizophrenia is rare and can be difficult to tell apart from other developmental disorders of childhood, such as autism.


Schizophrenia symptoms usually develop slowly over months or years. Sometimes you may have many symptoms, and at other times you may only have a few.
People with any type of schizophrenia may have difficulty keeping friends and working. They may also have problems with anxiety, depression, and suicidal thoughts or behaviors.
At first, you may have the following symptoms:
  • Irritable or tense feeling
  • Difficulty sleeping
  • Difficulty concentrating
As the illness continues, problems with thinking, emotions and behavior develop, including:
  • Lack of emotion (flat affect)
  • Strongly held beliefs that are not based in reality (delusions)
  • Hearing or seeing things that are not there (hallucinations)
  • Problems paying attention
  • Thoughts "jump" between unrelated topics ( “loose associations”)
  • Bizarre behaviors
  • Social isolation
Symptoms can vary, depending on the type of schizophrenia you have.
Paranoid schizophrenia symptoms may include:
  • Anxious
  • Angry or argumentative
  • False believes that others are trying to harm you or your loved ones.
Disorganized schizophrenia symptoms may include:
  • Problems with thinking and expressing ideas clearly
  • Childlike behavior
  • Showing little emotion
Catatonic schizophrenia symptoms may include:
  • Lack of activity
  • Muscles and posture may be rigid
  • Grimaces or other odd expressions on the face
  • Does not respond much to other people
Undifferentiated schizophrenia symptoms may include symptoms of more than one other type of schizophrenia.
People with residual schizophrenia have some symptoms, but not as many as those who are in a full-blown episode of schizophrenia.

Signs and tests

There are no medical tests to diagnose schizophrenia. A psychiatrist should examine the patient to make the diagnosis. The diagnosis is made based on a thorough interview of the person and family members. The doctor will ask questions about:
  • How long the symptoms have lasted
  • How the person's ability to function has changed
  • Developmental background
  • Genetic and family history
  • How well medications have worked
Brain scans (such as CT or MRI) and blood tests may help to rule out other disorders that have similar symptoms to schizophrenia.


During an episode of schizophrenia, you may need to stay in the hospital for safety reasons.
Antipsychotic medications are the most effective treatment for schizophrenia. They change the balance of chemicals in the brain and can help control symptoms/
These medications are usually helpful, but they can cause side effects. Many of these side effects can be improved, and should not prevent people from seeking treatment for this serious condition.
Common side effects from antipsychotics may include:
  • Sleepiness (sedation)
  • Dizziness
  • Weight gain
  • Increased chance of diabetes and high cholesterol
  • Feelings of restlessness or "jitters"
  • Slowed movements
  • Tremor
Long-term use of antipsychotic medications may increase your risk for a movement disorder called tardive dyskinesia. This condition causes repeated movements that you cannot control, especially around the mouth. Call your doctor right away if you think you may have this condition.
When schizophrenia does not improve with several antipsychotics, the medication clozapine can be helpful. Clozapine is the most effective medication for reducing schizophrenia symptoms, but it also tends to cause more side effects than other antipsychotics.
Schizophrenia is a life-long illness. Most people with this condition need to stay on antipsychotic medication for life.

In retrospect, Kaitlyn's symptoms began emerging when she was about 7 years old, but we did not recognize them for what they were. In 3rd grade she received the ADHD diagnosis, medication, and we thought we were set. It wasn't until this school year, that we realized that there clearly was something bigger going on than simply ADHD and a desire to argue with us about everything.

We now have a line on a psychiatrist in the area and hope to be able to get her in for an appointment in the next month or two (we're on a waiting list). Meanwhile we'll continue to drive an hour and a half to see the current psychiatrist who is monitoring Kaitlyn's medication on a monthly basis. This doctor does medication management only, and so we are hopeful that the new psychiatrist we're waiting on will be more hands on in the therapy department and work closely with the psychologist Kaitlyn will be seeing so that she will receive the best possible treatment.

Kaitlyn does not know the diagnosis, nor does she know the seriousness of it. We do not want her to feel labled or limited. She does know that she sees the world differently than other kids and that the medication is to help her to feel better. We are treating the symptoms rather than the diagnosis, if that makes any sense to you. We do not know if Kaitlyn's life will get much better than it is, and it's possible that it may get worse. She may or may not be able to handle college, and right now we are just taking life a month at a time. We're making sure to record her feelings if she shares them, her behaviors, weight and appetite and sleep patterns, in order to help determine if the medication she's currently taking is helpful, or whether she needs something in addition or completely different.

We look at this 11 year old girl that we nearly lost when I was 18 weeks pregnant, and remember how happy, and outgoing and positive she used to be when she was little, and wonder where that little girl has gone, and when it happened. She used to be everyone's favorite playmate when she was in daycare at the YMCA, and everyone wanted to invite her to their birthday party, and they wanted to be invited to hers. Somewhere along the way, she went from having MANY friends, to having virtually none.

She gets bullied, though now she claims it doesn't bother her anymore, and chooses to spend her recess and lunch time alone. Even when she's home with us, she chooses to spend most of her time by herself in her room than with us. It's almost as if she's trying to disappear. Kaitlyn listens to her music so loud with her headphones that I'm afraid that she's damaging her eardrums, yet part of me wonders if she's trying to drown out the voices that only she can hear.

Josh and I are working hard to learn all we can and to try and help Kaitlyn out in the best ways possible. Meanwhile, we are trying to come to terms with our and Kaitlyn's lives being turned completely upside down. We are trying to understand what we should and should not expect, and the best ways to understand Kaitlyn and to help her feel comfortable and as happy as possible. It's not easy to remember that she's not just being difficult and trying to push our buttons. She can't help a lot of what she does and needs to learn skills to help her cope.

Will the school be able to accommodate her and meet her needs in order to be a successful student? Perhaps not. They've already done special needs testing and determined that she doesn't qualify because she's an average student with superior academic knowledge. She's halfway through her "senior" year of elementary school and is already starting to worry about middle school. Kids don't get nicer as they get older, they get meaner. I don't see how she can be successful  in middle school with all her difficulties. Will THEY be able to accommodate her? Will she need to go to a special school? Will the district pay for a private school for  her? If not, will I have to home school her? 

Right now life is just so uncertain and our main concern is that Kaitlyn know how much she is loved just the way she is. She sees us working so hard to fight for her and rather than seeing that as love and devotion, she thinks she's being a bother. Dear God, NO! No amount of telling her that's not the case seems to help her feel better. She feels guilty for having this "problem," and seems to separate herself from us even further. 

Our hearts are overwhelmed and our minds are left grasping to comprehend what is happening. We're not angry at God and we're not questioning why. We just want to know the best ways to help Kaitlyn so she can live her life the happiest and fullest it can be. Kaitlyn is first and foremost our daughter whom we love unconditionally and without question. We will NOT give up. 

If we happen to cross your mind once in a while, a quick email to let us know you're thinking of us would be wonderful. We need all the love and emotional support we can get. Since we've started going through this whole process, I've learned just how important it is to make a point to let people know you love them, care about them and are thinking of them. You just never know how much they may need it, and what they're dealing with at the time. It may very well be a day when they need emotional support the most, and just maybe no one else has given them any that day.

Little by little, step by step, making my way every day.