It's Happening!

It's happening! Just got a call from the social worker at Sanders (Kaitlyn's school) that she will be starting full time at Western Hills Middle School on Wednesday, Nov. 20th!

Kaitlyn will go to school at Sanders Academy on Monday and Tuesday. This will give her those two days to say her goodbyes to her classmates and teachers, and to mentally prepare herself for Wednesday.

On Wednesday Kaitlyn will walk the halls of Western Hills as a member of the student body, not just a visitor. By starting on Wednesday, she'll have a more gradual transition. A three day week followed by a weekend, and then another three day week, as that second week is shared with Thanksgiving. After Thanksgiving she will begin her 5 day weeks like everyone else.

It has been a long hard journey, but now our girl is "coming home"! I pray that Kaitlyn will grace the hallways and classrooms of Western Hills with a sense of entitlement, because she has worked damn hard to get there.

Kaitlyn, we love you to the stars and back and I hope that you are as proud of yourself as we are.



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

I've Caught the Bug

This is probably not the most interesting subject matter for a lot of people, but I write what moves me and today it's picture taking.

It seems that I've caught the bug. The shutter bug that is. Lately I'm finding myself noticing the light and colors all around me like never before. The sunrise and sunsets have been particularly captivating the last week or so. The most gorgeous shot I've ever seen was one I was unable to capture on camera because I was driving the car and I was in the city at the time so I couldn't just pull over and stop. Josh tried to get it on his phone for me, but the tail lights from the other cars were interfering and all he got was red tail lights. The light changes so quickly at sunrise and sunset, that seconds can make all the difference in the world to getting the shot you want or not.

Yesterday morning as Alexa and I were on our way home from dropping Josh off at the train station, I was awestruck by the way the light and colors in the sunrise were playing in the leaves of the trees and giving them almost an ethereal glow. I wanted to stop and take pictures so badly, but on a school day, I just don't have the time to stop, and I wanted my good camera rather than the one on my phone (though that does take some lovely pictures sometimes). 

I promised myself that if today was going to be sunny and I could get up early enough, I would go out and get those pictures I missed out on yesterday. Now the light was just different enough that I didn't get exactly the shots I would have captured yesterday, but it was definitely beautiful, and well worth not rolling over in bed and going back to sleep. Every time I thought I was done and ready to go inside, I would see one more chance for a good or fun shot that I just couldn't resist. It was so much fun, and I felt so energized! Of course, that could partially be because it was about 30 degrees outside and I was in my pajamas and a light jacket. Ha ha! 

Most everything I do is for my family, and I love taking care of them, but everyone needs something that they do just for themselves. Taking pictures just may be my thing. I don't have to take magazine quality pictures, and other people don't have to love them as much as I do. I just have to enjoy taking them and looking at them afterward. My photo shoot this morning was the most fun I've had in quite a while.

A Tale of Hope

I can't believe how long it's been since I last wrote a blog entry. I was just looking and it's been since July of last year! 

Since last year so much has happened and a lot of the time it felt like there were way more downs than ups. Writing is usually very therapeutic for me, but the only way through this past year has been for me to hold things in and not address any of it. The situations were just too intense and overwhelming to even write for the sole purpose of venting my stress and emotions. Now that we've come to this point, I feel like I can finally write again. What a wonderful feeling!

The last entry I posted was right before Kaitlyn went into Bradley Hospital (a Children's Mental Health Hospital) at the end of July of 2012. The main reason she was in the hospital was to get her off one of the medications she was taking. This medication was having a negative effect on Kaitlyn, and so it made sense to make sure that she wasn't going to have adverse reactions to coming off the medication. That was a tough week for Kaitlyn, and for all of us. Josh was working in Boston every day, commuting home the usual 2 hours, and going straight to the hospital so we could visit her. Kaitlyn hated practically every moment she was there, and we left usually after spending only a few minutes with her because she was so angry that she had to be there and was upset that she wasn't going home with us. She also couldn't tolerate being around her sister and Kaitlyn's anxiety and stress would go through the roof very quickly.

After a week in the hospital, Kaitlyn went straight into a partial hospitalization program at Bradley Hospital. She was to go and participate in group therapy and individual treatment as well. She had to be there from 3-7pm every weekday. Kaitlyn hated this program even more than she did being in the hospital. She would vomit all the way there just about every day (she went for about 3 1/2 weeks), and she was extremely angry and said she didn't want help, and you know, she really didn't.

Five days after Kaitlyn's last day in the partial program, she started middle school. She had a great first day and I thought things were starting to look up. When she got off the bus after that first day, she was laughing and seemed to be happy for the first time in a very long time. The next morning, I drove Kaitlyn to school because she was an emotional wreck and her anxiety was through the roof. I dropped her off, with instructions to go directly to the guidance office so she could talk to someone with professional training. I let Kaitlyn know that I would go park in the lot and wait for a while to see if she or the staff needed me. Within ten minutes Alexa and I were headed into the school guidance office. From there, we went directly to Bradley Hospital to have her evaluated, and ended up leaving her there. This was a much shorter visit, just about 4 days I think. 

The day after Kaitlyn was released from BH, she started going to another partial hospitalization program, this time she was there from 8am-2pm, and she was MUCH happier about going. As Kaitlyn neared the end of her time at BH, they gradually reintroduced her back into school, sending her for a few hours a day, then to the program for the last couple hours of the day.

The first day Kaitlyn went back to school with no BH time, we met first thing with the guidance department staff. There we met a woman who told Kaitlyn that she could come and tour her school if she would like. That school was Sanders Academy, a small therapeutic school for middle/high school students who are unable to manage a "regular" school setting, due to mental and/or emotional setbacks or disabilities. Kaitlyn said she would like to see the school. We went the next day at noon for a tour and the following day Kaitlyn became a full time student there.

The first quarter was a bit difficult, with Kaitlyn's avoidance issues and anxiety causing her to vomit every morning and trying her best to not have to go to school, and then happening less and less as the year progressed. Kaitlyn missed 18 days of school the first quarter, but second quarter she only missed a few days, and third quarter she missed two, and I believe only one day fourth quarter. 

At Sanders Academy, Kaitlyn's grades improved quarterly. First quarter she had 4 C's and two B's, and by the end of fourth quarter she had straight A's. She also made great strides socially and personally. In mid June, Sanders holds an awards ceremony to reward the students and recognize their hard work over the school year. Kaitlyn received NINE awards that day. The awards she received are:

Most Improved Attendance
Artwork Displayed at Arts Fest 2013
Most Organized (at school, though not at home - ha ha!)
Most Positive Role Model (for her class)
Best Overall Academic Performance
Most Enthusiastic Student
Most Positive Attitude
Most Enthusiastic in Academic Achievement
Social Growth

If you know me well, you know that I am NOT a crier. I think I cried just about every time Kaitlyn got up to get a certificate that day. She's come so far! Every day things that you and I take for granted, don't come naturally to kids like Kaitlyn and the others like her. Some days just getting to school and managing to stay the whole day is a big accomplishment.

Two weeks ago, we went to a meeting at the school to discuss the possibility of transitioning Kaitlyn back into the "regular" middle school setting. I was going to wait until we know for sure one way or another whether she's going back or not, but I'm feeling excited and so optimistic that I just couldn't wait any longer. On Tuesday (10/22) Kaitlyn is going to Western Hills for a half day trial, and then being bused to Sanders for the last half of the day. If that morning goes well, we will meet to discuss her transition from Sanders to Western Hills. The plan right now is for Kaitlyn to be a full time student at WHMS beginning second quarter (Nov. 4th). Our girl has come SO FAR in the last year. She is so vastly different today from this time last year!

The staff at Sanders Academy have given us HOPE. A year ago I never would have believed that Kaitlyn would ever be leaving Sanders for another school. I was sure that she would be there until her graduation. Their patience and perseverance, kindness and caring for Kaitlyn has helped her tremendously. Thanks to them, Kaitlyn has helped herself by working so hard to overcome seemingly insurmountable obstacles. She is going to have to continue working this hard always in every aspect of her life, but we now have a bright, shining hope that she can do it. If all of us were as strong as Kaitlyn, we would all be truly exceptional people. 

Kaitlyn, I love you more than life, and I am incredibly proud of you. You are my shining star and I can only aspire to be as strong a person as you.

Update

This morning we took Kaitlyn to the hospital to be evaluated (as required by our health insurance). Tomorrow we go to admit her to an inpatient facility. Not sure how long she'll be there, but it sounds like the best fit for her right now, and she feels comfortable with it. She'll have her own room and there's an outdoor pool. We're feeling confident that this is where she needs to be and are hopeful that once the insurance says her inpatient stay is up, she'll be able to transition into a day program, which will allow her to come in the morning, stay for the day, and come home for the evening. The average inpatient stay is 10 days, so it would be good if our insurance agrees with that, however, as long as she can be in a program and get the help she needs, that's what matters most. This is very good news and I wanted to share it with you. Thanks for your loving thoughts, prayers and well wishes. We appreciate each and every one.


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

It's All In God's Hands

It's been almost 5 months since my last blog entry. Wow! So much has happened between February and now that I don't even know where to start. Medications have been increased, decreased or changed completely for Kaitlyn. She's had some side effects that we're not willing to live with or to make her put up with. 


June was a very difficult month for Kaitlyn. She missed the last two weeks of school due to depression, anxiety and paranoia. She didn't even feel able to attend her elementary school graduation ceremony or their end of the year field trip to Boston and Gillette Stadium. Once school was finished and summer vacation had begun, Kaitlyn was finally able to relax a bit, but her ability to control her emotions, thoughts and feelings dwindled to nothing and she started acting on them. We thought we were going to have to have her admitted to the hospital, but we managed to avoid that. So it was a medication change, followed by the addition of a new one a couple of weeks later to help her control those actions and intense and frightening feelings. Now due to some very negative side effects of that particular medication, we're going to start weaning her off of it next week. I'll admit, I'm concerned that she's going to start acting on her thoughts and feelings again, so we're praying there is an alternative to that particular medication that might be a better fit for Kaitlyn. 


Tomorrow I'm taking Kaitlyn to a hospital in Massachusetts to be evaluated for their partial hospitalization program. This means that if they take her, Kaitlyn will be going there 5 days a week from 9am-3pm. There she will receive intensive therapy and be taught coping skills to help her learn to live with her symptoms and feelings and make the most of each day. She will also see that there are other kids just like her, that she isn't the only one who has to learn to deal with similar problems. 


The down side to this partial hospitalization is that the hospital is an hour away with no traffic, and about 2 hours away in commuter traffic. We'll be driving up with the commuters tomorrow of course, then if she stays for the day, I'll come back home until it's time to drive back to get her and home yet again. This means no less than 5 hours of driving per day. I will be asking if it's possible to have them authorize service for Kaitlyn at one of our local hospitals for this reason. There are also a few other factors that make this more than just an inconvenience. Not only do we need the original hospital to authorize us to receive services from one of our local hospitals, there would also need to be space available in the local program, and at this point, I really would need the hospitals to work it out between them, because I'm not sure I have what it takes to arrange it myself. God knows our need and I'm trusting Him to work everything out for Kaitlyn's best. If she's unhappy and uncomfortable it's going to be a real fight to get her to go, and she's too big for me to strong arm her into the car anymore. Your thoughts and prayers are greatly appreciated. I am trying my best to just leave this all in God's hands and to not worry about what's going to happen. 


It isn't easy writing about something that is such a large and consuming part of my life without going into a lot of details and coming off as a total downer, but I think I've managed it this time around. I'm not even crying, so that's got to be a good sign, right?


Hoping and praying for some good results to post about next time. Thank you all for your love and support, it means more than words can say.


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

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.

 

Ordinary People

Have you ever wondered why you're here, or what you have to contribute to the world (at least your corner of it), or if you're even special? If we're honest, I think we can all say we've asked that question at one time or another. I know I certainly have.  

Truthfully I can't think of how many times I've asked myself, or asked God, "What's my talent? What's my gift?" All I ever saw was just me. I can carry a tune, but not well enough to think of myself as having that talent. Do I enjoy singing? Absolutely. I have a hard time NOT singing, but is it a talent/gift, I really wouldn't say so. I enjoy "making a joyful noise." I'm not an artist. I can't draw or paint any better than or even as well as my 4 year old daughter, Alexa. Ha ha! And my photographs are just everyday run of the mill family pics that anyone could take. Nothing special about that. I just don't have an artistic eye. I'm definitely not academically gifted, and so on. For approximately the last 20 years I've been wondering and thinking about this question. I do believe that once we discover our gift or talent, we are responsible to use it in a manner that benefits or enriches the lives of others.

 Several years ago, sometime after I was married and before I had children, I received a piece of junk mail from some school I'd never heard of. It was a writing school, correspondence I guess. There was a test you could send for to have your writing evaluated to see whether or not you should consider taking their course. I figured there wasn't any harm in asking for the test, since it was free and I wasn't under any obligation to sign up for the course. So, as you've already guessed, I took the test and they recommended I take the course because they thought my writing was "good enough." I was excited to think that I was or could be a good writer. We didn't have the money for me to take the course, and I was fine with that. I was simply interested in their response.


Two days ago I decided to start a blog, simply to encourage myself to write, just for myself. That might seem selfish to someone, but it's not really. We all need to take time to do something just for ourselves once in a while. Unfortunately, I can never manage to get past the initial writing session. That is why I decided that using the computer would be a better medium for me. 


After I posted my first blog entry, I received comments and/or "likes" from the two or three people who read it. I even have two followers. How excited am I?!! Now I have to produce, right? Motivation! There was a comment from a friend and former co-worker that rocked my world. 

 "glad you're using your gift to write things personal to you, but shared by others... Kudos :)"

When I read that, I read it again. Did you catch it? She said GIFT. Talk about an aha moment! I hadn't thought about the question in months and suddenly the answer was right in front of me in black and white. I'm a writer. This may well be the only form of publishing my writing that I ever do and that's ok. The number of people who read my musings may be very small, but maybe one day something I write will lift someone's spirits or encourage them in some way.

Then this morning the thought occurred to me that God makes ordinary people. That in itself makes us extaordinary. When we allow Him to use our gifts, talents, or our most basic abilities to help or enrich the lives of others, we are being the best selves we were created to be. Then we are doing what we were meant to do, and making a difference in our own way. That is significant. That is why we were put on this earth. 

Suddenly the gift/talent question didn't seem so important anymore. Do what you love to do, use it to make others lives better if you can, and be the best you you can be in everything. Chances are you'll find the answer to the "question" somewhere along the way. The only thing you need to be the best at is being your best you. Whoa, that sounds corny! True though.

See you next time!

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


 

Finding My Way

I keep wanting to write down my thoughts and musings and I can never seem to get it down on paper. Since I always seem to find time to be on the computer, I thought I'd try my hand at blogging. Just how often I'll post and whether or not I'll have anything to say that anyone besides myself wants to read remains to be seen. The fact remains that I'm taking the time to do something for myself, which I seem to have a hard time doing.

My life revolves around my girls, and as a Mom, I think that's the way it should be. Most everything I do, I do for them. I think about them, talk about them to anyone who'll listen, basically eat, sleep and breathe about them. They are my whole world. I guess it's natural that I always want to do and be more for them. Sometimes I feel overworked and under appreciated, but not usually. 

Alexa is my precocious,  curious, silly, funny 4 year old, who lives to dance and sing and dress up. She'll perform for strangers in the middle of Burlington Coat Factory or tell strangers, "I really like your baby!" We can be anywhere doing most anything and Alexa will come out with a compliment or an "I love you, Mom, you're the best girl." Or maybe she'll just be grouchy and want to be home and not driving to the train station to pick up Daddy. Perhaps she'll be excited that it's time to drive to Providence, yet again. She lives to give Daddy a kiss goodbye through the car window, regardless of the weather or temperature outside. Pretty much she's a happy, funny, sunny girl. Don't get me wrong, she can be just as crabby as the next kid, but it's not typical of  her. She's Mommy's girl through and through, and I couldn't be happier about it. Will she still be 6 or  7 years from now? Now that's a question. If she is, I'll be the happiest Mom in the world, but I'm not holding my breath. LOL!

Kaitlyn is Daddy's girl. She is 11 and loves most everything science related, is a voracious reader (who'd-a-thunk-it a couple years ago?),  and is very smart. She may not have the best grades in her class, but once she learns something it's not going anywhere. Besides, being smart isn't necessarily about grades anyway. She cares about the environment, and goes around turning things off if they're left on and scolds us about it. In Kaitlyn's perfect world, everyone would have a job that needs one and things would cost a lot less to make life more affordable. One day a couple of years ago she had a very long conversation with her Dad and I about how she was going to have a Dunkin Donuts and everything was going to cost a penny so everyone could afford to go there. Because everyone could afford it, everyone would have food for their families. It didn't make a whole lot of sense financially and obviously wasn't in the least bit realistic, but her caring for mankind more than made up for it.

I wish Kaitlyn and I were closer. I'm always asking her if she wants to go with me to run errands, or to do something for fun, just the two of us. She never does though. She won't go out for lunch with me, or to the mall or for manicures, or just to go for a walk. I ache to spend time with her but she's just not interested. A couple of weeks ago we were in the car just the two of us and I just started talking to her about this stuff and how much I love her and wanted her long before she ever came along. I cried, I know she did too. I explained how we almost lost her and I spent weeks 18-36 of my pregnancy with her on strict bedrest. That no matter how much I hated being by myself all day and not being able to go out and take a walk, or sit up in a chair, or eat at a table, I did it for her. I loved her and wanted her badly enough that I was willing to do whatever I had to to help make sure she got here safely and when she was supposed to rather than far too early. Kaitlyn unfortunately ended up feeling guilty rather than desperately loved and wanted. I said what I needed to get off my chest, but to what end? The last thing I meant to do was to make her feel bad. 


Nobody's perfect, I know that well enough, especially when you're a parent and in charge of shaping a child's life. We all are human and make mistakes. I'm doing the best job I can with what I have and I feel like I'm succeeding, whether Kaitlyn and Alexa agree or not. Ha ha! All I can do is to show them love, tell them I love them, care for them the best I can and apply discipline when necessary. Hopefully along the way or down the road they will appreciate these efforts and come to know just how loved they are. Not a day goes by that Josh and I don't tell the girls we love them, and show them in several ways. 

Being a parent is both the best and worst job in the world, and I wouldn't trade it for anything.

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