Ain't It Great To Be Crazy?

As I was going about the business of getting ready for the day, I had this uncontrollable urge to do something silly. My next thought was of what Kaitlyn (my 12 year old daughter) would think "if she could see me now." The thought that immediately followed that one was that grown ups are just kids in bigger bodies. I like that thought. 


As "adults", we have jobs and more responsibilities, kids of our own, and so on. Underneath the big important things we have to think about and do every day, we're still the same kids inside that we were way back when. We still like to have fun, be silly, go a little (or a lot) crazy. I say we don't do it enough. I think kids get embarrassed by their parents acting foolish because they don't see it very often. That's not how they're used to us behaving and so it throws them off balance. Now of course, if you have teenagers, they're going to roll their eyes, and not want to hug you in public, or whatever, because it's expected of them to behave a certain way at that age. That's ok. 


I think that as adults, grown ups, parents, grandparents, we're entirely too serious and need to learn to loosen up a little, go a little wild and silly a bit more often. This is not only good for the heart and soul, but laughter is healthy. It HAS to be, after all Reader's Digest doesn't have a section titled, "Laugher, The Best Medicine", for no reason. And the Bible even says that a merry heart does good like a medicine, but a broken spirit dries the bones. SO, laugh, be silly and feel better! It must be easier to handle the tough stuff in life if you have a merry heart, don't you think? 


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

For All It's Not

I grew up on the largest island in Canada's Bay of Fundy. The Bermuda of the Maritimes, the Queen of the Fundy Isles. Back in the day when I was living there and growing up, there were roughly 2,800 people on the island. No traffic lights overhead, no shopping center, no bowling alley, and the main road had one lane going in either direction with a yellow line between the two. The population has grown a bit, but the rest still applies. Fishing used to be the main source of income, now that has taken a back seat to tourism. Still fishing is the main source of income for a great many.


The year I started first grade was the first year that there were no more village schools. An end of an era. Goodbye to one room schools. How old am I you must be wondering. Well, I'll confess, I'm not a spring chicken anymore, but the fact of the matter is, that things just take a little longer coming to Grand Manan than to a lot of other places.


Grand Manan boasts one gas station nowadays, (yes there used to be several), and one main grocery store, though the Corner Store in "the Head", still carries some groceries. Restaurants are coming and going all the time, or changing hands and names. Like anywhere else, there are changes all the time, and some things that never seem to change at all.


The nearest city is an hour and 20 minutes by ferry ride, and about a 45 minute drive after that. This is where most "islanders" go for doctor appointments, shopping, etc. A trip "away" takes pretty much an entire day, so you have to plan for it, and don't forget that if you have reservations or appointments off island, that the weather or any number of maintenance issues with the ferry could mean that you don't get to go after all. The first ferry from Grand Manan loads at 7am and leaves for her crossing at 7:30. If you're travelling to the island, you have to be mindful of the departure times because if you miss that last ferry, you aren't getting back   tonight. People have been known to sleep in their cars in the lineup to wait for the first trip the next morning.


There's one ATM machine, and that's at the bank in Grand Harbor. Most places that take debit/credit cards don't take Discover (if there are any), and there are no 24 hour convenience stores. (I think they close at 11pm if memory serves me correctly, that could have changed). There are no fast food restaurants, no Walmart, and the only "chain" store is the Canadian Dollar Store.


For all the things it's not, Grand Manan is many other things. Grand Manan IS a small community, with quirks and foibles, it IS the place I was born and raised. Grand Manan IS the place I went to school, played, laughed, rode my bike without a helmet, and didn't think twice about traipsing off to the "shore" to climb rocks with my neighbor. We built a camp in the trees behind my grandparent's house on the hill and swept the "floor" with a rag tag broom. We went to the beach every day it didn't rain in the summer with our grandmother, and raided the peas from Papa's garden on a regular basis. We played under and climbed the apple trees, and watched Nana hang clothes on the line ever day it was fit, sometimes they came in frozen. Ha ha! I grew up without a dishwasher, and I remember cable TV coming to Grand Manan when I was about 14. We didn't even have a microwave in our house until I think it was the year before I got married, or the same year. (yes we were probably the last holdouts on the island in that department)


Grand Manan IS still my favorite place to visit of all the places I might ever dream of going. It IS inconvenient in some ways given that there are a number of "modern" conveniences that they don't have, but if you don't grow up with them, you don't really think about it much and you simply accept that's the way it is. Grand Manan IS the place I will always call home, even many years from now. While I have changed a lot over the years, there's still salt water that runs in my veins, and the need to slow down and get back to a little simpler way of life for a week or so every year.


The thing I absolutely miss the most about Grand Manan besides my family (that's a given), is the fact that everyone knows everyone else, and while there are drawbacks to that, it's the one thing that sets the island apart. In a crisis, everyone pulls together. If you have a family member who is sick, you lose your home in a fire, whatever the case may be, Grand Manan is THE place to be. Everyone takes care of each other, and there are more offers of help or listening ears than you know what to do with. It IS the one place that when I'm there, and someone asks me how I'm doing, they stop to hear the answer, and they care. For all the inconveniences and the unholy rumor mill, there is no other place I'd rather be from and the only place I know I could absolutely go if I needed somewhere to go. People from Grand Manan are friendly, warm, honest (sometimes to a fault), and genuine. The most genuine people I've ever known anywhere. These people are real. Even if someone's real awful, I'll take that any day over a friendly phony.


So, for all it's not, Grand Manan IS home to my heart and the reason I'm the person I am today. Maybe that's why I don't seem to fit in so well here in New England, I'm too real, warm and genuine and they don't know how to handle that here. And that's just going to have to be ok, because you can take the girl off the island, but there's no way you're getting the island out of the girl!


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

Thankful!

Thank God! We finally got a new psychiatrist for Kaitlyn. After countless phone calls over several weeks, and being told no one had any availability, Josh and I finally decided that Kaitlyn would just have to "take one for the team", and see a male psychiatrist. So, I called Bradley hospital to see if there was anyone taking new patients (outpatient). There was only one doctor in the entire hospital who was and wouldn't you know he wasn't in our insurance provider's network. So, I compiled my list of doctors in the area and called the first name on my list. According to my information there were two male doctors at this office. I learned immediately that there was indeed a psychiatrist accepting new patients and Kaitlyn could be seen on Friday, Jan. 13th. Oh, and by the way, it's a woman. Ha ha ha! I hung up the phone and shouted loud enough to scare Alexa to tears. Naturally I had to explain I wasn't angry, but extremely happy. She took a bit of convincing, but we're good. I don't care what anyone says about Friday the 13th. In my book it's going to be a very good day! I feel like I was carrying a couple of 18 wheelers around on my shoulders and someone just lifted them off. Funny how once we decided to stop looking for a female psychiatrist one just kind of fell into our laps. 

Kaitlyn has a lot of support at school from the psychologist, social worker, her teachers etc. We are so very thankful that she's in the school she's in. With only about 240 students in K-6, the staff are fairly easily able to keep an eye on her and make sure she's ok. They care about her and want to help her to succeed as a student. Academics aren't that difficult for her. She actually managed Bs and one C on her last report card, her best report card since we moved to RI. When you consider all that she has going on internally, and the fact that she's struggling and working so very hard to compensate at school, she is doing phenomenal! If she was able to perform to the best of her ability (unhampered by schizophrenia), you can just imagine how well she would be doing.

We have a lot of learning and adjusting to do, and so does Kaitlyn. There are so many uncertainties, but we are trying to get plugged into resources to help us adjust to our new life. There's a family support group called NAMI (National Alliance on Mental Illness) that has a 12 week course for families. This teaches you about mental illness,  

http://www.nami.org/Template.cfm?Section=Family-to-Family&lstid=605

There's also a support group, Parent Support Network of Rhode Island, http://www.psnri.org that provided services such as teaching you how to parent a child with mental illness. Both sites also provide education on mental illness, instruction on how to cope and help locating services etc. Better still, they have locations you can go to in order to receive support. The next best thing to finding the help you need, is knowing you're not alone and having someone to talk to. I'm looking forward to getting linked into this community so we can have support on this level. To be able to talk to people who really understand what we're going through will be so good for me (us). Taking that first step won't be easy, but I know it will be worth it.

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

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.

http://psychcentral.com/blog/archives/2010/01/18/13-myths-of-schizophrenia/

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.

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.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001925/

Schizophrenia

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.

Symptoms

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.

Treatment

During an episode of schizophrenia, you may need to stay in the hospital for safety reasons.
MEDICATIONS
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.

Waiting

I don't even know where to begin. I've been trying to write for weeks, but there's a lot I can't discuss and that makes it very difficult. 


Kaitlyn has had her neuropsychological evaluation and we learned far more than we anticipated that we would. We are still waiting for the report, which will probably be another few weeks, but we are already working with what we know. There are some serious concerns and Kaitlyn has had multiple doctor's appointments this month as a result.  My heart is so very heavy and feels like it is breaking into pieces. It's a time in my life where I could sure benefit from having a best friend. But that's a blog for another day. 


During the midst of all this, Josh's job is changing health care providers, so we're having to find new doctor's. There are fewer Child and Adolescent specialists than there are for adults. That means they have longer waiting lists, assuming they are even accepting new patients. It's more difficult still when you're looking for female doctors. I have very nearly if not completely exhausted my list of possible doctors within a 50 mile radius under our current insurance. I can't even begin calling doctors on my list with the new insurance until I know exactly what health care product we have. For the time being, all I can do is make my list of potential doctors as long as I can and wait. Waiting is hard! Waiting isn't acting and I have a really difficult time with that. 

Little by little, step by step, I'm making my way every day.

Parents Don't Have All the Answers

Three years ago our daughter was diagnosed with ADD. It made perfect sense and in fact we could look back over the years and see that the evidence had been there for years. You may or may not know that 3-5% of children are diagnosed with ADHD or ADD and that the actual percentage that have it are probably closer to 7%, meaning that 2-4% have it and are never diagnosed.

Many parents don't want their kids on medication, and I certainly understand where they come from. Who wants their child on a medication that they may have to take for the rest of their lives? There probably isn't a medication that exists that doesn't come with a warning about side effects and sometimes they're scary ones. The chances of your child having them may be slim, but do you really want to take that chance? In our case, it was not a matter of choice so much as one of necessity. She was so completely miserable and struggling to such a degree, that something had to be done.  She just couldn't take it and neither could we.

To spend 2-3 hours a night fighting to get homework done in the second grade? Got to be something wrong there. Unfortunately, I just thought she was not wanting to do it and was simply being difficult. After all, I certainly knew she was more than capable to do the work.  By the time her work was finished we were both completely exhausted, in tears usually and I was feeling like the worst mother in the world, and that she was lazy and what were we going to do with her?

Third grade was more of the same, then in 4th I started wondering if she could possibly have ADD/ADHD. I met with her teacher at his request and I mentioned it. He thought we should definitely speak to the pediatrician and explore the idea. Talk about feeling like a bad Mom when I found out why things were the way they were. To think of all the times I'd yelled at her for dawdling and just not getting down to it. Breaks my heart.

Since then we have tried a few different medications to find the one that works for Kaitlyn. Just as everyone is different, so is our chemical make up. Sometimes that means trying a few different things to find out what works best for the individual. Finally in December of 2010 after two years of different medications, we found one that seems to be doing what she needs it to.

With the correct medication in hand you would think it would be smooth sailing from then on, right? Wrong. We have a daily routine to make it easy for her to remember to do things, and we help her keep herself organized. Still she is struggling with anxiety, oppositional behavior, insisting on being alone most of the time, not seeming to have consideration for others' feelings, and a temper that goes off over seemingly nothing. So what are we doing wrong? Does she just enjoy being difficult? The answers to those questions are "I don't know", and "No"respectively. So what in the world is going on?

We're having her tested for special needs at school, although the people doing the testing and we both agree she'll probably blow those tests out of the water. She's highly functioning and seems to be able to compensate where she needs to at school, at least most of the time. The thing is, we know she's bright enough to do much better in school, and so do her teachers, so it seems like she's not trying her best, when in fact she is. They are accommodating her in several areas to help her out, but still she struggles. What can we/they do to help this child live up to her obvious potential?

Since the end of 4th grade, she has been in therapy to help talk about the things that bother her, and help her to learn how to handle her anger. This past summer she had to switch therapists because of a change in availability, and now we have recently found out that her current therapist isn't covered by our insurance. Ms. X is trying to get authorized to see Kaitlyn and we hope that she can. They have a good rapport so having to switch yet again would mean starting all over from the beginning relationship wise. Not exactly an optimal situation. For now, we wait. On a positive note, Ms. X was recommended that we have our daughter evaluated for language processing.

We are going to have a neurological psychological evaluation done next week. Hopefully this testing will answer some of our questions regarding language processing, and the other issues. Within the next month we're optimistic that we'll learn what tools she needs to equip herself for life. It would mean so much for her to have the "tools" to cope with her difficulties and overcome them.  Right now she's merely living with them and continuously struggling, feeling stupid, friendless, and self-conscious. I am excited to know that we don't have to continue on the way we have been and that we are going to have a happier, more self-confident child. She is truly amazing and we couldn't be more proud of her.


Little by little, step by step, I'm finding my way every day.