Some time ago I decided I was infringing on Cassie's privacy and deleted my access to this blog. Yesterday I suddenly had a yearning to write again and have gone to great lengths to restore my access (I guess in all it took about 10-15 minutes!) So much for Cassie's privacy. Maybe I'll start scribing for her so she can have her input, as well.
It's been almost 2 years and a lot has happened. Missy and Matt got divorced. We were distraught about that, since Matt had become an integral part of our family, but Missy has become the best version of herself since the divorce, so I realize the marriage was not what I hoped it was. Gary found the girl of his dreams, Rachel, and they'll be married June 15 (my birthday!) Rachel's Mom passed away a few months ago from cancer. She is a strong girl, but misses her Mom terribly and wishes she could be at her wedding. We were able to meet her once in the hospital, and she was a lovely woman. Besides Rachel, she had to leave behind a husband, a 15 year old daughter and a 7 year old son. Gary has grown up a lot through the experience.
So, Cassie. School started out gangbusters. She's in 11th grade, unbelievably. She was even arriving on time, 5 days a week. Then, the honeymoon was over, as it happens every year, but this year it was particularly bad. i.e. locking up knives, overmedicating to alleviate symptoms, general wailing and gnashing of teeth, etc. This was around the middle of October, when she started having "visions" as she calls them. It's always bloody _____ (fill in the blank). At first it was zombies, now it's clowns. She sees them eating her and herself covered in blood. I guess that would scare the crap out of anybody, right? That, coupled with the voices calling her every name in the book, laughing at her and screaming so loud she can focus on nothing else.
Her psychiatrist (or pdoc as the internet gurus have dubbed psychiatrists/psychologists) recommended she go on a homebound schooling program for a period of time. WHAT IS HOMEBOUND???? WHY HADN'T ANYONE MENTIONED THIS BEFORE??? So, he wrote a note for 4 months and here we are, 6 months later, still at home. The recent hellacious, 4 meeting long IEP is another story altogether.
Homebound seemed like the answer to all our problems. No more fighting and crying and begging and cursing over going to school. Which is good, no doubt. But the flip side of that is all 3 of us in the house together, practically 24/7, except when I guiltily slip away to gather food or attend a church function. It has been, without doubt, the most miserable, seemingly never ending winter of our lives. Gary's been so sick/depressed, he has left his chair possibly a total of 12 hours since September. I'm supposed to be the healthy one, but even I'm feeling at the end of my rope. Spring can't get here soon enough.
That said, though, Gary did achieve a big success this winter. He beat CMH at their game. Community Mental Health provides unique mental health services such as professionals coming into YOUR environment and developing a treatment plan with a team. We have tried, unsuccessfully, to procure these services for Cassie for years, only to be constantly told that if you don't qualify for Medicaid, forget it. Now, how wrong is that? I have to be poor to get the services my daughter needs?? Wow, the mental health system is so screwed up.
So, through research, Gary found out about a waiver that allows for the child to be counted as a family of "1" so the parent's income doesn't factor in. Of course, there are a million criteria, most of which Cassie meets. 99% of CMH's employees seem completely confused about it, but we've managed to get Cassie a therapist who is coming to our home on a weekly basis, a WRAP facilitator (someone who will focus on managing her environment with a team approach), a respite worker who we'll meet tomorrow, and possibly other services such as a parent mentor who can commiserate with us about things like IEPs. We have to end Cassie's relationship with her current psychologist, but are staying with her psychiatrist.
Now that we're looking at Cassie turning 18, things are about to change. I need to start a guardianship process, like, yesterday. She has already been approved for disability, but I'm sure nightmares will ensue over that. Jobs, relationships, adult choices...ugh. Somehow I think life is about to get a whole lot more difficult.
Yesterday things got pretty bad and we tried out child emergency services at CMH. Cassie really needed someone to talk to and her therapist was out with a sick baby. The problem is, nobody has a magic wand. I hope we're headed in the right direction for Cassie, but I know she will never be without major struggles.
Cassie's therapist just left and she wanted us to think of 3 things we're thankful for. It was hard, for me AND her.
Let me end on that note:
1. I'm thankful I'm not poor, even though the mental health system thinks I should be.
2. I'm thankful the sun is shining today.
3. I'm thankful things don't stay the same for long. Everything changes, it's a given.
Wednesday, April 17, 2013
Tuesday, January 24, 2012
Thoughts on Gratitude
*2013: Another post I found in drafts. It's actually a tak I gave in church a while back.
Prior to the current economic downturn, I believed this ‘age of entitlement’ knew no bounds. While I know that so many of the rising generation are strong, obedient, valiant and righteous, I refer to the belief held by some members of this generation that the business of earning your due is old fashioned and it’s their given right to have NOW what their parents took a lifetime to acquire. This mindset baffles and infuriates parents and employers who wonder where in the world they got such an idea.
The basis for the attitude of entitlement comes from the value we, as a society, place on ‘stuff’. The mode of acquiring for acquisition’s sake seems to have really taken hold among the emerging middle class in the 1950’s. We began to busy ourselves with ‘keeping up with the Joneses’ and all that entailed. It was no longer good enough to ‘use it up, wear it out, make it do, or do without’ as the previous generation had taught. Our STUFF began to define us. Houses, cars, clothes, vacations, these things and more have increased in social importance over the decades.
It’s not considered out of the ordinary, when it comes to our children, if we have it to give, (or sometimes if we don’t) to freely give and give and give with few or no expectations in return. Many families lack the time or energy to ‘Train up a child in the way he should go (Proverbs 22:6)’. It’s just easier to give them something.
Ergo…those who espouse these values created the entitlement monster. In the hurried up frenzy of life, too many parents have forgotten to teach their children the value of work and to look with gratitude to Him from whence all things come. If we teach children the most important thing in life is having a name brand on our shirt, or the latest and greatest technology , and then we unconditionally serve up their every wish and desire…well…now we’re seeing the result of that.
In Doctrine and Covenants 59:21 it states, “And in nothing doth man aoffend God, or against none is his bwrath ckindled, save those who dconfess not his hand in all things, and eobey not his commandments.” President James E Faust, former second counselor in the First Presidency spoke of gratitude as a saving principle. He stated that “It (was) clear (to him) from this scripture that ‘to thank the Lord thy God in all things’ (D&C 59:7) is more than a social courtesy; it is a binding commandment.” He said, “One of the evils of our time is taking for granted so many of the things we enjoy. The Apostle Paul described our day to Timothy when he wrote that in the last days “men shall be lovers of their own selves, covetous, boasters, proud, blasphemers, disobedient to parents, unthankful, unholy.” (2 Tim. 3:2.) These sins are fellow travelers, and ingratitude makes one susceptible to all of them.”
Pondering this principle of gratitude, I was able to think of many examples in my life.
A good example is my Grandma. Approaching her 90th year, she still attends holiday gatherings during which she fervently seeks moments with individual family members and couples to glean information and impart wisdom. At times, she just soaks it all in, tears occasionally rolling down her cheeks. Family has always been of the utmost importance to her, and now, with her years quickly advancing, more than ever, she treasures these family times. She worries whether or not she’s taught her progeny all she was sent here to teach. To that end, my Mom has started recording her bits of wisdom in the spirit of not losing that gained through tough life lessons. The habits I rolled my eyes at in my teens, now seem supremely wise and I’m so grateful for her and her lesson of focusing on the important things in life.
If you asked me my favorite place of all, I might say ‘the beach’ or some exotic destination. This is what my ever-practical Grandma said, “Right where we are is my favorite place of all as it has so many conveniences, friends, family and folks we have known. Our church and neighbors all are very special enrichment of our lives. We have lots of family, even (7) great grandchildren less than 40 miles of us. We have known much happiness here.”
I’ve always thought that life was a process of reaching and reaching and always striving for more. While this is true of knowledge, there is much to be said for just being content with where you are and what you have. I conclude from this that being happy with this moment in time is a wonderful expression of gratitude.
Another viewpoint of gratitude is through a child’s eyes. We’ve been commanded to ‘receive the kingdom of God as a little child (Mark 10:15)” It’s impossible to do this if we haven’t first received our temporal blessings with gratitude.
Think of introducing a baby to the backyard. The grass, the leaves, the insects, the dirt…all is a wonder to him. And it truly is a wonder; we’ve just gotten used to it.
In Primary the children are learning the song “My Heavenly Father Loves Me.” The first verse reads, “Whenever I hear the song of a bird, or look at the blue, blue sky, whenever I feel the rain on my face, or the wind as it rushes by, whenever I touch a velvet rose, or walk by a lilac tree, I’m glad that I live in this beautiful world Heavenly Father created for me.” A truly grateful heart starts with the basics.
I’ve been shown plenty of examples of gratitude for simple things by my own children. My son Gary LOVED gloves when he was small. He called them ‘glubs’. He actually still loves glubs, at 23. He also loved boots. As a toddler he had a pair of snow boots we called T-Bones because they had a T-Rex skeleton magically appear on them when they came in contact with the cold snow. He wore his T-Bones winter and summer, until the stink was too hideous to speak of. He just loved those boots. Gloves and boots – they’re pretty great. Just ask someone who doesn’t have any.
When Gary was in preschool, Missy was around age 2. My goal was for her to take her nap while Gary was in school and she usually complied. Sometimes she slept late and I’d have to wake her up so we could walk to the end of the block to pick up Gary. This was the case one afternoon. I woke her up and, to her great amazement, it was raining! We walked out the front door, I gave her a raised umbrella to hold and all the way there and back she sang, “umblella, umblella, umblella to you”. That expression of joy for rain and the protection from it has stuck in my memory. Umbrellas are certainly something worth singing about.
Cassie, on the other hand, loves live things. Now it’s dogs, but when she was small it was bugs. This child loved bugs. She’d search through leaves and flowers, sift through dirt and sand in search of 6 legged friends. One caterpillar, in particular, Cassie decided would be her pet. She named this caterpillar ‘Jewelry’ and we have a great picture of Jewelry the Caterpillar scaling a beaming Cassie’s arm. Unfortunately, Jewelry went missing from her jar the following day. Cassie was so distraught over her runaway caterpillar that, to soothe her, my husband Gary made up a missing poster. It read, “Have you seen Jewelry the Caterpillar?” and it listed our phone number. On it, he drew a picture of a cartoonish, smiling caterpillar. Not surprisingly, we never found Jewelry. But Cassie’s love for a lowly caterpillar reminds me to be thankful for ALL of God’s creations.
After a fun family gathering many years ago, I asked my nephew Daniel, what his favorite thing about the day had been. He replied, “Mama”. Remembering his simple and heartfelt answer always makes me smile and reminds me to be thankful for my Mama.
So, I’ve talked about the elderly and children. I wonder if it’s easier to see blessings more clearly at the beginning and end of life. It’s the middle that befuddles most of us. With all the everyday-ness of life…the responsibilities, the commitments, the tasks to be done, the heartaches, the misunderstandings, trying to juggle it all, can we maintain our sense of wonder and be grateful to God for all we’ve been given?
Going back to this idea of entitlement, we could look at it another way. Each of us came to this earth being entitled to receive all that Heavenly Father has to offer us. A definition of ‘entitlement’ is, “a right to benefits specified especially by law or contract” It’s only through our not keeping God’s law that the contract is broken. And He gives us opportunity after opportunity to reinstate the contract and gain all He offers.
Again, President Faust: “As with all commandments, gratitude is a description of a successful mode of living. The thankful heart opens our eyes to a multitude of blessings that continually surround us. President J. Reuben Clark, formerly a First Counselor in the First Presidency, said: “Hold fast to the blessings which God has provided for you. Yours is not the task to gain them, they are here; yours is the part of cherishing them” President Clark points out to us that we are continually being blessed, and it’s our duty to see those everyday ‘happenings’ as gifts and cherish them as such. Gratitude is NOT about how MUCH we have, it’s about recognizing, utilizing, and thanking God for what we’ve already been given. This has very little to do with how big your house it or how much money you make.
Feeling grateful is sometimes easier said than done when it seems your life is in the gutter. Most of us have been there at one time or another, for a variety of reasons, and some of us are there right now. Having endured some things, I have a testimony of coming through the fires of adversity stronger than before. The tough things in life are hard to be grateful for…maybe gratitude isn’t what we feel. I’ve tried to think of another word, but am at a loss. I suppose I could say I’m not exactly grateful for the hardship of the experience, but I am grateful for Heavenly Father’s confidence in my character; that I would succeed in my trials and overcome my weaknesses, maintaining and even strengthening my faith throughout. The inimitable Dolly Parton said, “the way I see it, if you want a rainbow, you gotta put up with the rain.” And so it is…blessings follow the trials.
When we’re challenged by life circumstances, we can turn away from God or turn toward Him. I love the story of Job. When I feel sorry for myself, I think of him. After his property and children were destroyed, he praised God, saying, “Naked came I out of my mother’s womb, and naked shall I return thither: the Lord gave, and the Lord hath taken away; blessed be the name of the Lord.” (Job 1:21) Now THAT’S character! God knew Job’s character and trusted him with all the trials Satan could throw at him. Had Job not had a grateful heart when he prospered, he could not have weathered the storms of loss as he did. I have a cross-stitched sign in my home that reads, “Thoughts become words, words become actions, actions become habits, habits become character, character is everything.” What more can I say?
President Thomas S. Monson said, “Think to thank. In these three words is the finest capsule course for a happy marriage, a formula for enduring friendship, and a pattern for personal happiness.”
I’d like to close with expressions of gratitude for all Heavenly Father has seen fit to bestow upon me. I’m grateful for the blessings and grateful to have come through the trials, knowing I have many more to experience. I’m grateful for the Gospel of Jesus Christ in my life, for my family, my health, and so many other things. I strive everyday to see God’s hand in all things, great and small, knowing that gratitude will save me from the sin of pride. I’m grateful for all the opportunities I’m given in this great church I’m a member of to grow, to learn, and to share the feelings of my heart. And I pray, in the words of my Grandma, that each of us will “find blessings and pleasure in each day and be thankful.”
Wednesday, August 31, 2011
Say it Ain't So/Answers to Prayers
Summer isn't really over, right??
We had a *great* summer, the best in recent memory even. Gary and Missy & Matt moved back to MI from Idaho and while the chaos has been a little stressful, the overall effect on Cassie has been stabilizing.
We purchased a used pontoon boat in late spring; a behemoth of a thing at 24', a real floating living room! The pontoon gave us so much enjoyment and Cassie swam almost every day.
There have been a few bumps, for sure (starting with another seizure in early June...while tubing in the lake!!), but nothing like the omnipresent depression of the past year(s). She actually enjoyed herself a lot of the time, even though she spent most of it on her laptop watching episodes of "Bleach". Even her 16th birthday turned out to be a success, with two friends, both of whom are lovely girls who share Cassie's love of anime and gave her the best birthday ever.
Contrast that with today. Mandatory yearbook meeting. The staff leaders are gorgeous, slim, tan girls and I immediately sensed trouble. In fact, it seems yearbook is a magnet for almost every beautiful teenage girl in the entire school. Cassie's paranoia started cranking up and my antennae were raised, for sure.
Of course Cassie has been angst-filled for the past week in anticipation of school starting. I could tell she was freaking out during the meeting, which ended with meeting her 'buddy' and some ice breakers. We stopped into the Stockbridge house to pick up mail and check things out and she headed straight for the knives. When she's in that mode, all I can do is not make a big deal of it. She put the knife down, got in the car and cried the entire way back to Reading (over an hour).
OH MY GOSH, I CAN'T DO THIS TO MYSELF OR HER ANYMORE. All the way back I'm thinking, 'why does she really even have to go to school?? She's not learning anything, anyway.' School is merely a device of torture for Cassie. Self-imposed, to some extent, but torture nonetheless. What, exactly, is the point of that? Graduation is out of the question, so what is it we're achieving here? Every year we sign the IEP's, not really sure what's been achieved or really analyzing the goals that are being set, because we've all but given up hope. School has become merely a respite for US, a babysitter, a calm between storms. And that's really not good enough, is it?
So tonight I started thinking of alternatives. The past two years I've had this idea that public school is NEVER going to be able to accommodate Cassie, even in their most specialized classroom. Inclusion be damned, I'm willing to try any program that could prevent her from going off the deep end. I've asked professionals about alternatives and no one ever seems to know anything.
After some searching on the internet, I came across a school that specifically treats kids with developmental and emotional disorders, complete with on-site therapy. From what I can tell, it's mostly residential, but appears that one could also attend school only. And it's in JONESVILLE. That's about 15 minutes from the cottage, and in the same county.
I don't have enough information yet to form any kind of decision, but I'm certainly going to look into this TOMORROW. It seems too good to be true, but if this is the answer I've been seeking, it could be life-changing for all of us. *2012: That school ended up being a residential program primarily for wards of the court. This year it closed due to lack of funding. Turns out they had a lot of complaints against them.
We had a *great* summer, the best in recent memory even. Gary and Missy & Matt moved back to MI from Idaho and while the chaos has been a little stressful, the overall effect on Cassie has been stabilizing.
We purchased a used pontoon boat in late spring; a behemoth of a thing at 24', a real floating living room! The pontoon gave us so much enjoyment and Cassie swam almost every day.
There have been a few bumps, for sure (starting with another seizure in early June...while tubing in the lake!!), but nothing like the omnipresent depression of the past year(s). She actually enjoyed herself a lot of the time, even though she spent most of it on her laptop watching episodes of "Bleach". Even her 16th birthday turned out to be a success, with two friends, both of whom are lovely girls who share Cassie's love of anime and gave her the best birthday ever.
Contrast that with today. Mandatory yearbook meeting. The staff leaders are gorgeous, slim, tan girls and I immediately sensed trouble. In fact, it seems yearbook is a magnet for almost every beautiful teenage girl in the entire school. Cassie's paranoia started cranking up and my antennae were raised, for sure.
Of course Cassie has been angst-filled for the past week in anticipation of school starting. I could tell she was freaking out during the meeting, which ended with meeting her 'buddy' and some ice breakers. We stopped into the Stockbridge house to pick up mail and check things out and she headed straight for the knives. When she's in that mode, all I can do is not make a big deal of it. She put the knife down, got in the car and cried the entire way back to Reading (over an hour).
OH MY GOSH, I CAN'T DO THIS TO MYSELF OR HER ANYMORE. All the way back I'm thinking, 'why does she really even have to go to school?? She's not learning anything, anyway.' School is merely a device of torture for Cassie. Self-imposed, to some extent, but torture nonetheless. What, exactly, is the point of that? Graduation is out of the question, so what is it we're achieving here? Every year we sign the IEP's, not really sure what's been achieved or really analyzing the goals that are being set, because we've all but given up hope. School has become merely a respite for US, a babysitter, a calm between storms. And that's really not good enough, is it?
So tonight I started thinking of alternatives. The past two years I've had this idea that public school is NEVER going to be able to accommodate Cassie, even in their most specialized classroom. Inclusion be damned, I'm willing to try any program that could prevent her from going off the deep end. I've asked professionals about alternatives and no one ever seems to know anything.
After some searching on the internet, I came across a school that specifically treats kids with developmental and emotional disorders, complete with on-site therapy. From what I can tell, it's mostly residential, but appears that one could also attend school only. And it's in JONESVILLE. That's about 15 minutes from the cottage, and in the same county.
I don't have enough information yet to form any kind of decision, but I'm certainly going to look into this TOMORROW. It seems too good to be true, but if this is the answer I've been seeking, it could be life-changing for all of us. *2012: That school ended up being a residential program primarily for wards of the court. This year it closed due to lack of funding. Turns out they had a lot of complaints against them.
Wednesday, March 30, 2011
You're Invited to My Pity Party
I find this stuff harder to write about than I expected. It's hard enough to live it sometimes without reliving it to write it down. That's probably why I'm posting so infrequently.
The holidays passed without event. All the kids home and Gary here until the end of January provided a good distraction, especially having someone around to play video games with Cassie! We've been slogging through winter like everyone else and for such short days they can seem s o o o l o o o o n g. Having massive amounts of depression in the house makes a long day even longer. The darkness has really closed in the past few months. She's added Lamictal to her med regimen, and that gave us a really good respite there for awhile and then CRASH! Hard.
Voices are overpowering, terrifying. Scared to go to sleep, scared to face the day, go to school, church, every and any social event. School attendance is ridiculous, a continual source of guilt for me. Eating, eating, eating. I think there's nothing to eat, but then I'll catch her with half a loaf of bread or entire cans of fruit. Anything in excess will cause weight gain. We lock up the food at night or whenever things get out of control. She got into the food storage in the basement, so we had to lock that up, too. Lest you think I'm starving my child, trust me, she's in no danger of that.
School is not quite a disaster yet, but getting there. This week, she was suspended for 2 days for kicking a kid in the head. This has NEVER been a problem and I have theories I'll get into in a minute. Her gen ed classes (yearbook and choir) are both pretty loosely structured, allowing lots of time for students to talk. The subject of high school conversations is a daily source of grief for Cassie. Sex, parties, and drinking are topics Cassie isn't ready to digest. A couple girls in choir were showing her pictures of male anatomy they'd drawn and I went ballistic about that. The fact is, I can't protect her from all this rubbish and I just don't know what to do.
I started researching a psychiatric hospital in Grand Rapids and she got to the point about a week ago where SHE was telling me she needed to go somewhere because she felt so bad. I was considering a partial program there. Insurance has changed and I'm on the hook for 1/2 the cost of hospitalizations, which certainly puts a different view on using those services. However, if we really feel it would help and she absolutely needs it, of course we're there regardless of cost. Our past experience with hospitalizations has not been good, so we've agreed she pretty much has to be to the point of needing an ambulance before we'll go that route.
In the meantime, in light of increasing and debilitating symptoms, psychiatrist put her on another new med, perphenazine. Side effects create the need of pairing with ANOTHER drug, congentin. This poor baby is so medicated, she'll get to the point where she refuses to take it and that's not good. She threw some geodon I gave her the other day. Usually it's not a problem. I can certainly see her point of view, though. When you're taking a literal HANDFUL of medicine and the voices in your head are still screaming horrible things in a frightening way...I'd probably have exactly the same reaction...why am I taking this crap?? But pity doesn't really help anyone, so I bury those feelings and put on my no-nonsense face and tell her to take the blankety-blank medicine. (I really say blankety blank, because swearing is just so yesterday.)
The perphenazine (aka Trilafon, a medium potency typcial antipsychotic)caused a ramping-up of Cassie's behavior. She got really talkative, started calling people on the phone, became the life of the party, thinking every boy was 'staring at her'. Sounds great, right? Except I knew it was the drug and it was swinging her into a manic state. This is a drug that's supposed to cause sedation. The culmination was the suspension when, thinking it would be funny to wake a kid up in the library (who was sitting in video gaming-type chair) she planted her foot on the kids' forehead. He went to the principal and I got a phone call the next morning. For once, I was happy Cassie hadn't gotten out of bed yet for school and I told the principal she could not deal with being reprimanded in his office. He felt bad about the whole thing, knowing something of our situation. I was pretty hysterical. I know kids and adults with issues like Cassie's are not strangers to social troubles, but this has never been part of what we've dealt with. Cassie has been a quiet, compliant student because she saved her fallouts for home.
In talking to Cassie, we had to keep it pretty low key, so as not to push the whole cart over the edge. Of course she realized right away it was wrong and will apologize to the kid tomorrow when she goes back. Her teacher told me, "not to let her wrap me around her finger." Yea. Comments like this produce extreme amounts of guilt, even though I know what we deal with is not your typical ADHD (and I know that can be quite bad, too.) My child is losing her mind and I'm well aware there's a certain amount of manipulation that occurs, but I live every day by the seat of my frickin' pants.
Parenting is difficult as it is, and parenting a psychotic child is on another level altogether. There's no tried and truer techniques, no clear boundaries, nothing. We watch her peers achieve and progress, while Cassie struggles to keep her head above water every day. Her jealousy knows no bounds as she compares herself to those she wishes she could be like and ends up hating them for being what she can't. I cannot even begin to relate to parents of normal kids because it just makes me want to cry. "Mary had such a good time at prom, she went with a bunch of girls from her cheer squad!" "there's Emily, star center of the basketball team and straight 'A' student!' Cassie doesn't really have a friend at school. Her 'best friend' is the para-pro. Her weight and inability to cope with competition makes it unlikely she'll ever play high school sports, and she's in a class that doesn't give grades. She'll receive a certificate at graduation. I really try to be happy for their kids' achievements, but it's a bitter pill to swallow every time. And I wonder how many parents watched Gary and Missy and all their promise and felt like I do now. One good thing that comes of this is a newfound sensitivity toward those who are different.
That said, I want it known that I'm proud of Cassie for hanging on by the skin of her teeth most days. Some days, victory is defined as going to school for 2 hours. I'm proud of her fantastic sense of humor, her willingness to try again and again to fit in, and conquering fears each and every day. I love her so much and I'm just having myself a fine pity party at the moment, so don't mind me. Tomorrow's a new day, right??
The holidays passed without event. All the kids home and Gary here until the end of January provided a good distraction, especially having someone around to play video games with Cassie! We've been slogging through winter like everyone else and for such short days they can seem s o o o l o o o o n g. Having massive amounts of depression in the house makes a long day even longer. The darkness has really closed in the past few months. She's added Lamictal to her med regimen, and that gave us a really good respite there for awhile and then CRASH! Hard.
Voices are overpowering, terrifying. Scared to go to sleep, scared to face the day, go to school, church, every and any social event. School attendance is ridiculous, a continual source of guilt for me. Eating, eating, eating. I think there's nothing to eat, but then I'll catch her with half a loaf of bread or entire cans of fruit. Anything in excess will cause weight gain. We lock up the food at night or whenever things get out of control. She got into the food storage in the basement, so we had to lock that up, too. Lest you think I'm starving my child, trust me, she's in no danger of that.
School is not quite a disaster yet, but getting there. This week, she was suspended for 2 days for kicking a kid in the head. This has NEVER been a problem and I have theories I'll get into in a minute. Her gen ed classes (yearbook and choir) are both pretty loosely structured, allowing lots of time for students to talk. The subject of high school conversations is a daily source of grief for Cassie. Sex, parties, and drinking are topics Cassie isn't ready to digest. A couple girls in choir were showing her pictures of male anatomy they'd drawn and I went ballistic about that. The fact is, I can't protect her from all this rubbish and I just don't know what to do.
I started researching a psychiatric hospital in Grand Rapids and she got to the point about a week ago where SHE was telling me she needed to go somewhere because she felt so bad. I was considering a partial program there. Insurance has changed and I'm on the hook for 1/2 the cost of hospitalizations, which certainly puts a different view on using those services. However, if we really feel it would help and she absolutely needs it, of course we're there regardless of cost. Our past experience with hospitalizations has not been good, so we've agreed she pretty much has to be to the point of needing an ambulance before we'll go that route.
In the meantime, in light of increasing and debilitating symptoms, psychiatrist put her on another new med, perphenazine. Side effects create the need of pairing with ANOTHER drug, congentin. This poor baby is so medicated, she'll get to the point where she refuses to take it and that's not good. She threw some geodon I gave her the other day. Usually it's not a problem. I can certainly see her point of view, though. When you're taking a literal HANDFUL of medicine and the voices in your head are still screaming horrible things in a frightening way...I'd probably have exactly the same reaction...why am I taking this crap?? But pity doesn't really help anyone, so I bury those feelings and put on my no-nonsense face and tell her to take the blankety-blank medicine. (I really say blankety blank, because swearing is just so yesterday.)
The perphenazine (aka Trilafon, a medium potency typcial antipsychotic)caused a ramping-up of Cassie's behavior. She got really talkative, started calling people on the phone, became the life of the party, thinking every boy was 'staring at her'. Sounds great, right? Except I knew it was the drug and it was swinging her into a manic state. This is a drug that's supposed to cause sedation. The culmination was the suspension when, thinking it would be funny to wake a kid up in the library (who was sitting in video gaming-type chair) she planted her foot on the kids' forehead. He went to the principal and I got a phone call the next morning. For once, I was happy Cassie hadn't gotten out of bed yet for school and I told the principal she could not deal with being reprimanded in his office. He felt bad about the whole thing, knowing something of our situation. I was pretty hysterical. I know kids and adults with issues like Cassie's are not strangers to social troubles, but this has never been part of what we've dealt with. Cassie has been a quiet, compliant student because she saved her fallouts for home.
In talking to Cassie, we had to keep it pretty low key, so as not to push the whole cart over the edge. Of course she realized right away it was wrong and will apologize to the kid tomorrow when she goes back. Her teacher told me, "not to let her wrap me around her finger." Yea. Comments like this produce extreme amounts of guilt, even though I know what we deal with is not your typical ADHD (and I know that can be quite bad, too.) My child is losing her mind and I'm well aware there's a certain amount of manipulation that occurs, but I live every day by the seat of my frickin' pants.
Parenting is difficult as it is, and parenting a psychotic child is on another level altogether. There's no tried and truer techniques, no clear boundaries, nothing. We watch her peers achieve and progress, while Cassie struggles to keep her head above water every day. Her jealousy knows no bounds as she compares herself to those she wishes she could be like and ends up hating them for being what she can't. I cannot even begin to relate to parents of normal kids because it just makes me want to cry. "Mary had such a good time at prom, she went with a bunch of girls from her cheer squad!" "there's Emily, star center of the basketball team and straight 'A' student!' Cassie doesn't really have a friend at school. Her 'best friend' is the para-pro. Her weight and inability to cope with competition makes it unlikely she'll ever play high school sports, and she's in a class that doesn't give grades. She'll receive a certificate at graduation. I really try to be happy for their kids' achievements, but it's a bitter pill to swallow every time. And I wonder how many parents watched Gary and Missy and all their promise and felt like I do now. One good thing that comes of this is a newfound sensitivity toward those who are different.
That said, I want it known that I'm proud of Cassie for hanging on by the skin of her teeth most days. Some days, victory is defined as going to school for 2 hours. I'm proud of her fantastic sense of humor, her willingness to try again and again to fit in, and conquering fears each and every day. I love her so much and I'm just having myself a fine pity party at the moment, so don't mind me. Tomorrow's a new day, right??
Sunday, November 21, 2010
Good News!
Gary's scan results were good, even great! Instead of growth there has actually been some shrinkage.
And Cassie performed in her high school choir's broadway show, sang a solo and was really good! Mom and I were bawling like babies. Everyone applauded long and loud and she's still riding high on that one!
Thought I'd write something POSITIVE for once...it's good to have something positive to write.
Happy Thanksgiving!
And Cassie performed in her high school choir's broadway show, sang a solo and was really good! Mom and I were bawling like babies. Everyone applauded long and loud and she's still riding high on that one!
Thought I'd write something POSITIVE for once...it's good to have something positive to write.
Happy Thanksgiving!
Thursday, November 18, 2010
School Days
The school year started off so well. Cassie started taking Wellbutrin just prior to the beginning of school and it seemed like a wonder drug. She responded remarkably well and we were on cloud nine, thinking that maybe we'd found the magic pill that would solve all Cassie's problems. Yea, right.
Cassie's therapist suggested she was 'ramping up' and we pooh-poohed that because we were just so glad to not have the Tazmanian Devil in our house. At this point we figured mania would seem like paradise compared to despair. Maybe unrelated, but within weeks she had a seizure at school. What a scene that was and it was all downhill from there. While the ER docs couldn't agree that it was actually a seizure, I believe it was and after some research we thought maybe the Wellbutrin, our wonder drug, could have been the culprit. We were between a rock and a hard place though, because since she had been doing so well she was scheduled to go to a choir camp that weekend and I had decided she was well enough that I could fly out to see Gary and Missy in Idaho,expecting she would be happily ensconsed at camp most of the nights I was gone.
I'd gambled on both counts that the chapter of wellness would continue and I lost. Not knowing she would no longer respond favorably to the Wellbutrin, we kept her on it out of fear of how she would handle the upcoming stressors without the very chemical we believed was allowing us to take those risks. I went to Idaho, Cassie went to camp, and all hell broke loose. My phone started ringing at church on Sunday, right after Cassie finished camp and it was one of those episodes I'd like to forget. I finished my visit with G & M with dread in my heart, imagining what I'd come home to.
Gary went into his study and didn't emerge for weeks. He started having new symptoms we'd never seen before. Cassie's depression swallowed her up until she couldn't get out of bed in the morning. She was/is terrified of the voices, which by this time were almost continually screaming. We temporarily put her on a delayed school schedule, which meant that she missed math every day. A few days she didn't go to school at all. I gathered every ounce of imagination and bribery skill I possessed to get her to school every day. It was exhausting. Then she'd come home from school completely freaked out from having been at school.
Most worrisome was that she was taking her bad behavior outside our home, which had never been a problem up til now. Gary received a phone call from the dad of Cassie's Okemos 'enemy'. Cassie had been texting some pretty terrible things to her. The same day I found out that she'd been hanging around with the school thugs after lunch. That explained the language she'd been spewing lately and part of the source of her unhappiness. She'd also treated one of the young women at church very badly at a dance, sending this poor girl home in tears. I was not exactly surprised by this new development, knowing how she can be at home. I guess you could say it was a resigned feeling of 'oh crap, what fresh hell are we going to have to deal with now??' Each offense called for an explanation to the offended party and some form of atonement by Cassie and then hope for understanding. And, of course, trying to reason with and apply appropriate discipline to an unreasonable, unbalanced child.
Then, suddenly, the switch flipped again and she started getting better. But on Halloween afternoon she had another seizure and this time I was there to witness it. The first time the hospital hadn't provided me with information and I, so convinced it was a one-time occurrence, didn't bother to educate myself on seizures. As she lay on her back, seemingly not breathing, it didn't occur to me to turn her on her side. Fortunately, it did occur to Gary, and as he did that, it was evident she was choking on some fluid. Again, ambulance to the ER. Followed by EEG (normal) and neurology (normal, although some weakness on the left side).
This time, we knew we needed to withdraw the Wellbutrin. It certainly wasn't helping and was quite possibly causing the seizures. What followed the withdrawal was another trip to the pit of despair and even her professional helpers noticed she was worse than normal. I'm not sure if medication withdrawal was the source of this downturn, or maybe the fact that it also coincided with the time change (daylight savings).
I have to commend the school for helping and not exacerbating the problems we've been having. Frankly, I can't imagine Okemos being anywhere near as accomodating or creative or even receptive to suggestions as Stockbridge has been. Hostility was the status quo there. I find the atmosphere so much more relaxed and friendly and the staff is just exemplary. Cassie's teacher is amenable to any changes we need to make and open to any and all suggestions.
I knew the thing she needed most of all was some positive peer interaction and an English teacher who facilitates yearbook suggested Cassie join. It's a class in the middle of the day comprised of mostly 11th and 12th graders. While we're only in the second week of this change, Cassie has expressed to me she 'loves it'. A ray of hope.
Last week, about Friday or so, happy mode started again and I'm grateful for that. She was so great, I couldn't stop hugging her and I said, 'Cassie I wish you could be like this all the time!' She replied, 'I know Mom, but I can't because of my disease.' Insight is a good thing. We're starting to rate days 1 to 5 according to her mood. 1 being as good as it gets and 5 being hospitalized. Our thinking is that it might help our stress level to be able to predict some of this stuff. That is, if it's following a pattern. At least it gives us some illusion of control!
Today I'm at Ohio State University Cancer Center with Gary, awaiting test results. He's convinced he's getting bad news. I sure hope not. I really don't need more fodder for my blog.
Cassie's therapist suggested she was 'ramping up' and we pooh-poohed that because we were just so glad to not have the Tazmanian Devil in our house. At this point we figured mania would seem like paradise compared to despair. Maybe unrelated, but within weeks she had a seizure at school. What a scene that was and it was all downhill from there. While the ER docs couldn't agree that it was actually a seizure, I believe it was and after some research we thought maybe the Wellbutrin, our wonder drug, could have been the culprit. We were between a rock and a hard place though, because since she had been doing so well she was scheduled to go to a choir camp that weekend and I had decided she was well enough that I could fly out to see Gary and Missy in Idaho,expecting she would be happily ensconsed at camp most of the nights I was gone.
I'd gambled on both counts that the chapter of wellness would continue and I lost. Not knowing she would no longer respond favorably to the Wellbutrin, we kept her on it out of fear of how she would handle the upcoming stressors without the very chemical we believed was allowing us to take those risks. I went to Idaho, Cassie went to camp, and all hell broke loose. My phone started ringing at church on Sunday, right after Cassie finished camp and it was one of those episodes I'd like to forget. I finished my visit with G & M with dread in my heart, imagining what I'd come home to.
Gary went into his study and didn't emerge for weeks. He started having new symptoms we'd never seen before. Cassie's depression swallowed her up until she couldn't get out of bed in the morning. She was/is terrified of the voices, which by this time were almost continually screaming. We temporarily put her on a delayed school schedule, which meant that she missed math every day. A few days she didn't go to school at all. I gathered every ounce of imagination and bribery skill I possessed to get her to school every day. It was exhausting. Then she'd come home from school completely freaked out from having been at school.
Most worrisome was that she was taking her bad behavior outside our home, which had never been a problem up til now. Gary received a phone call from the dad of Cassie's Okemos 'enemy'. Cassie had been texting some pretty terrible things to her. The same day I found out that she'd been hanging around with the school thugs after lunch. That explained the language she'd been spewing lately and part of the source of her unhappiness. She'd also treated one of the young women at church very badly at a dance, sending this poor girl home in tears. I was not exactly surprised by this new development, knowing how she can be at home. I guess you could say it was a resigned feeling of 'oh crap, what fresh hell are we going to have to deal with now??' Each offense called for an explanation to the offended party and some form of atonement by Cassie and then hope for understanding. And, of course, trying to reason with and apply appropriate discipline to an unreasonable, unbalanced child.
Then, suddenly, the switch flipped again and she started getting better. But on Halloween afternoon she had another seizure and this time I was there to witness it. The first time the hospital hadn't provided me with information and I, so convinced it was a one-time occurrence, didn't bother to educate myself on seizures. As she lay on her back, seemingly not breathing, it didn't occur to me to turn her on her side. Fortunately, it did occur to Gary, and as he did that, it was evident she was choking on some fluid. Again, ambulance to the ER. Followed by EEG (normal) and neurology (normal, although some weakness on the left side).
This time, we knew we needed to withdraw the Wellbutrin. It certainly wasn't helping and was quite possibly causing the seizures. What followed the withdrawal was another trip to the pit of despair and even her professional helpers noticed she was worse than normal. I'm not sure if medication withdrawal was the source of this downturn, or maybe the fact that it also coincided with the time change (daylight savings).
I have to commend the school for helping and not exacerbating the problems we've been having. Frankly, I can't imagine Okemos being anywhere near as accomodating or creative or even receptive to suggestions as Stockbridge has been. Hostility was the status quo there. I find the atmosphere so much more relaxed and friendly and the staff is just exemplary. Cassie's teacher is amenable to any changes we need to make and open to any and all suggestions.
I knew the thing she needed most of all was some positive peer interaction and an English teacher who facilitates yearbook suggested Cassie join. It's a class in the middle of the day comprised of mostly 11th and 12th graders. While we're only in the second week of this change, Cassie has expressed to me she 'loves it'. A ray of hope.
Last week, about Friday or so, happy mode started again and I'm grateful for that. She was so great, I couldn't stop hugging her and I said, 'Cassie I wish you could be like this all the time!' She replied, 'I know Mom, but I can't because of my disease.' Insight is a good thing. We're starting to rate days 1 to 5 according to her mood. 1 being as good as it gets and 5 being hospitalized. Our thinking is that it might help our stress level to be able to predict some of this stuff. That is, if it's following a pattern. At least it gives us some illusion of control!
Today I'm at Ohio State University Cancer Center with Gary, awaiting test results. He's convinced he's getting bad news. I sure hope not. I really don't need more fodder for my blog.
Thursday, August 19, 2010
The Summer of Her Discontent
For me, heaven is a hammock and a book by the lake. In so many ways, this has been the best summer I remember since I was a kid. Waking up almost every day to sunshine, water, and the prospect of a gloriously unmapped day is my idea of SUMMER! We've swam, boated, antiqued, enjoyed campfires, shared many days with friends and family, almost to our content. It's just downright depressing to think of going back to real life.
Cassie, on the other hand, has not fared so well this summer. Her depression rarely lifts and her mind terrifies her often, sometimes constantly. She spends most of her time playing a handheld video game or watching movies. Even on the boat, the game comes along. We carry on despite her constant naysaying and sour demeanor and it saddens me that she cannot find joy in this idyllic life we try to give her.
The thing she craves most, friends, I can't give her. The boy I was so excited about lasted all of, maybe, 2 or 3 weeks. Cassie was much more enamored with him that he with her and she quickly wore out her welcome. It didn't help that the boy prefers the company of video games more than people. We brought out 2 of her friends for a couple days in July to attend an anime conference and that went very well. Cassie acted so normal and had a great time with them. I think the girls had a good time, as well, it's just been hard to pin them down on when they can come back.
We just had a flurry of activity starting July 31, when the fam rented the big house on connecting Hemlock Lake. That same day, Gary, Missy, and Matt flew in from Idaho. It was a frenzied, fun time for most of us, but pretty overwhelming for Cassie. The fam stayed a week, and Missy and Matt were here an additional week. Gary stays until 9/5. The kids were/are terrific with Cassie most of the time. They took her to Cedar Point and were delighted to report how 'normal' she was. She rode all the roller coasters and RAN from ride to ride, keeping up with them all the way.
Now school is looming large in her mind and it's really freaking her out. Yesterday, she was terrified, in tears and couldn't get out of the house, so I ended up giving her geodon, xanax, and the beta blocker (name I never remember) to get her through the day.
The meds. *sigh* I really don't know how much they help, other than making her too tired to fight with us. It doesn't seem that a person on that much medication should be so symptomatic. She's on a maximum dose of geodon, plus celexa, and ativan. She's been through all the newer antipsychotics, so we're left with the typicals, which are notorious for their side effects. Her therapy seems to be circular because she goes in with her complaints, is given advice on how to deal with these things, and she routinely refuses to help herself.
Reading back, I see that she's been miserable for many months. It's agonizing to have a child so unhappy nearly all the time. In stages, I'm learning to extricate myself and lead as much of a separate existence as possible. Lately it's occurred to me (isn't that part of s song...) that I must develop more outside interests and work more often to make myself less available (less of a punching bag) to Cassie. Meanwhile, we continue to revolve around Planet Cassie and hope for any ray of sunshine to brighten her dark days.
Cassie, on the other hand, has not fared so well this summer. Her depression rarely lifts and her mind terrifies her often, sometimes constantly. She spends most of her time playing a handheld video game or watching movies. Even on the boat, the game comes along. We carry on despite her constant naysaying and sour demeanor and it saddens me that she cannot find joy in this idyllic life we try to give her.
The thing she craves most, friends, I can't give her. The boy I was so excited about lasted all of, maybe, 2 or 3 weeks. Cassie was much more enamored with him that he with her and she quickly wore out her welcome. It didn't help that the boy prefers the company of video games more than people. We brought out 2 of her friends for a couple days in July to attend an anime conference and that went very well. Cassie acted so normal and had a great time with them. I think the girls had a good time, as well, it's just been hard to pin them down on when they can come back.
We just had a flurry of activity starting July 31, when the fam rented the big house on connecting Hemlock Lake. That same day, Gary, Missy, and Matt flew in from Idaho. It was a frenzied, fun time for most of us, but pretty overwhelming for Cassie. The fam stayed a week, and Missy and Matt were here an additional week. Gary stays until 9/5. The kids were/are terrific with Cassie most of the time. They took her to Cedar Point and were delighted to report how 'normal' she was. She rode all the roller coasters and RAN from ride to ride, keeping up with them all the way.
Now school is looming large in her mind and it's really freaking her out. Yesterday, she was terrified, in tears and couldn't get out of the house, so I ended up giving her geodon, xanax, and the beta blocker (name I never remember) to get her through the day.
The meds. *sigh* I really don't know how much they help, other than making her too tired to fight with us. It doesn't seem that a person on that much medication should be so symptomatic. She's on a maximum dose of geodon, plus celexa, and ativan. She's been through all the newer antipsychotics, so we're left with the typicals, which are notorious for their side effects. Her therapy seems to be circular because she goes in with her complaints, is given advice on how to deal with these things, and she routinely refuses to help herself.
Reading back, I see that she's been miserable for many months. It's agonizing to have a child so unhappy nearly all the time. In stages, I'm learning to extricate myself and lead as much of a separate existence as possible. Lately it's occurred to me (isn't that part of s song...) that I must develop more outside interests and work more often to make myself less available (less of a punching bag) to Cassie. Meanwhile, we continue to revolve around Planet Cassie and hope for any ray of sunshine to brighten her dark days.
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