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.

1 comment:

  1. Oh Kristi...You guys are all in my prayers. I work with people with disabilities for a living and have done so for more than 10 years. I deal with individuals suffering with Schizophrenia and other mental illnesses everyday so I fully understand the impact it has on her and your entire family. You are an amazing woman and seem to be handling this beautifully. Kaitlyn is so blessed to have you guys as parents. Many people are left alone to manage their illness. I would encourage you to get involved in support groups. NAMI is the National Alliance on Mental Illness. I just Googled them and they have support groups in your area. Check it out. I believe that you can learn so much from them. There is also a group called Parent Support Network of Rhode Island. I would get involved in whatever groups you can to learn more about managing this disease. Remember that you have the greatest resource of all...Jesus! I pray that He gives you grace & shows you mercy as He has chosen you to be the mother of this very special young lady. He never gives us more than you can bear therefore, He knew you'd be up to the challenge! I SO admire your strength!