A College With One Class Every Three Weeks

There is a private college in our town, a very good one, that has an interesting approach to learning.  Instead of taking five or six classes a semester, you take one class at a time, lasting for three weeks.  So you only have that one class to focus on at a time.  Sounds ideal for kids with executive functioning issues or ADD.  We would love Caroline to go here, but don't know if she will be able 1. to get in, and 2. to keep up as this is a rigorous institution.  But they do have women's lacrosse, and she could live at home so we could monitor her meds and moods.  We have a couple more years but we are already scoping out possibilities for college now.

Struggling to Enjoy This

I am admitting I am really struggling right now.  With anxiety, depression, anger and disappointment.  I think that I had a lot of false expectations of what this Christmas in this new house, new town would be like.  Two of my kids are really resentful that we have moved here, that they are far from the home town they grew up in, far from their friends.  Nothing feels right to them.  I have picked up their negative emotions and responded with anger.  I want them to love living here because I love living here.  I longed to lived here.  I longed for positive change not only for Caroline but for myself.  Now we are here and we are getting much resistance.  I thought that Christmas all together here would be fun, filled with great family memories.  I guess my expectations were unrealistic, at least for this first year, having only been here six months.  I need prayers for peace in our home and for real joy.  And for patience with my kids.  And the ability to not take on their negativity.

The Christmas Crush

I have a love/intense dislike relationship with Christmas.  I love the spiritual part of Christmas, and I actually love to give gifts.  But the hustle and bustle, the same Christmas songs played over and over ad nauseum, and the T.V. commercials designed to stir up our greediest inclinations all combine to make this season exhausting and stressful.  Today my husband was supposed to take the girls aways for the day to a huge beautiful mall an hour north so I could clean, finish shopping and wrap presents but Caroline doesn't want to go.    I am disappointed because I really wanted the whole house to myself, but honestly I understand why she would rather lounge than spend hours in crowded surroundings with noise and lights and people pushing.  Probably not the best environment for her.  So she will nap and watch T.V. and I will try to pretend I am alone.   Three more days.

Found a New Great Psychiatrist

So thankful that we were led to a GREAT new psychiatrist and nurse practitioner at an office very close to our home.  The first visit yesterday was a 15 on a scale of 1 to 10.  Could not be happier with their attitude, availability, willingness to keep her on her present med mix, and the decor of the office.  Yes, the decor.  The other office was so depressing.  This office was decorated with fun and funky colors and accessories that made the visit seem like you were in someone's living room.  Why that struck me as a big plus, I don't know, except that I am personally very sensitive to color.  I crave beautiful colors and the other office was so drab.  We were also given the scoop on which of the adolescent psychiatry inpatient facilities were the best in this greater Denver area.  So glad to get this information.  We have learned that driving an hour to get the best treatment is worth it.

Big Meeting, Big Decisions

We met with the IEP head, the principal, and with the teacher in question on Friday.  The teacher denied the practice of a "Survivor" like vote to decide who stays and goes in the groups.  Caroline has insisted this actually happens.  We aren't sure who to believe.  I want to believe both of them.

We made it clear, however, that Caroline has learned very little this semester in his class.  The offer was made of moving her out of his class to a computer based class for kids who really struggle with math.  And also they gave us the option of letting her skip taking the final exam, and just letting her present grade of a C stand.  We are taking this offer.  Caroline breathed  a huge sigh of relief when we told her this.  She needs to get out of his class regardless.  We like him as a person, he seems nice enough and caring, but the method of teaching Geometry simply doesn't fit her learning style at all.

The principal was hugely interested in helping Caroline to succeed at this school.  We feel he genuinely cares about her.

Caroline spent most of the weekend depressed over the lack of friends at her school.  She was crying because she has no one to sit with at lunch.  And apparently some "mean" girls have said some things to her that I will be keeping an eye on.  She doesn't always share with us everything that happens during her day.   And her sister, whose friends are in some of Caroline's classes, is quite angry at the thought of Caroline talking to them and possibly embarrassing her.  Sometimes we wonder if we should have just tried to put them in separate high schools from the beginning.  There as a big reason we never put Caroline and her older sister Elizabeth in the same middle and high school.  We knew they needed their space.  Maybe this is true for Caroline and Jane.  We want them to love and support each other, but this is not the usual situation.  Jane hears things all the time that Caroline has said that are huge exaggerations or even lies and she is just so sensitive.  Her friends ask her about these tall tales and she just wants to hide under a table.  We are working with Caroline on truthfulness.  She exaggerates because she feels so badly about who she is right now that she wants to be someone else, someone that people will like.  But she doesn't always see the consequences or can't seem to stop herself.  I confronted her on some of these things a few days ago and her response was defensiveness and denial. This is something that will really hurt her in relationships and jobs so we have got to help her get control over this.

Reflections on the Shooter at Newton, CT

We don't have a lot of answers yet as to why this young man decided to take out his rage on his mother and then 26 innocent people, most of them small children in such a horrific way, forever altering the lives of so many.  We have heard the terms "personality disorder" and "Aspergers Disorder" tossed around by the media.  At this point, it isn't clear what this young man's issues are.  But what everyone needs to understand is that the motivation behind his rampage was far beyond a personality disorder.  He had likely been deeply wounded somewhere, somehow, and in addition he likely had a mental illness and was unmedicated.  I feel that this is yet another sad example of what happens when those who are "different" are marginalized and shunned.  Hopefully this will focus more attention on the need for people to reach out to the lonely and alone.

A Kindred Spirit

It is very hard to find that local friend who knows and understand one's struggle with a special needs child, and one who has dealt with public schools and all of the hoops one must go through to get what your child needs.  Our Sunday School group has proven to be a great source of friendships in a very short amount of time, and very wonderfully, I am getting to know another family who has been there, done that with their son, who is now in college.  In college!  What a prospect! Today we met for coffee and I was so very encouraged by her story of how they went through hell and high water to get him what he needed in school, all of the therapies they paid for so that he could succeed and graduate from high school, all of the IEP meetings, even resulting in two teachers getting fired for their classroom practices that put obstacles in front of not only their son but other children who struggled as well.  And his dream of going to college was what kept him going.  I feel I am going to learn a lot from her experience now that she is "on the other side." Her son has lived at home while going to college, but he graduates this December with an associates degree and is going on to a four year college next.  All through high school they kept their sights on simply getting a degree, but not a GED because too many doors would be closed to him by doing so.  I needed to hear all of this today.  Praise God for His perfect timing!!

Proud of My Girl

With finals starting this week, Caroline has thrown herself into studying for them with gusto.  She has typed out a study schedule to cover all the bases.  I am so proud of her tenacity.  Considering how difficult this semester has been in every way, she is remarkable for not giving up.  That she would dedicate herself to doing as well as she possibly can on these exams has really surprised me.  I didn't have half of her zeal in high school.  I am just praying that she won't have any med issues or health issues that will interfere with her actually taking the exams.  But I guess that is what the IEP is supposed to cover.  We have a meeting this week to decide on changes for next semester's classes.  We may ask her to be put into a different teacher's math class if we can't get him to change the way he operates.

Trying Hard Not to Explode Over This One

Caroline revealed to us tonight that this math teacher, whom we heretofore liked, has yet another humiliating practice.  Each week the students are divided into work groups to do projects and even tests together.  What we did not know is that after a test, the group is told to vote the one student out of the group who they do not want to remain in the group.  In other words, the kids who draw down the group grade because they aren't getting the material are voted out.  What the hell??  Sorry for the language but how is this encouraging a positive classroom environment.?? This is humiliation!  This isn't Survivor, this is a classroom full of kids who are struggling to learn and like math!!  I immediately emailed the principal because I have had enough!!   Am I overreacting? I don't think so.  This is just wrong.

Illegal According to FERPA

A friend of mine who is a teacher informed me tonight after I shared about this teacher's practice of sharing the A grades with the class and commanding applause that this violates a federal law concerning student confidentiality.  The law is under FERPA, which I need to research, and prohibits sharing student's grades in the classroom.  So I emailed the principal and brought this to his attention.  He is looking into it.  I really don't want to get this teacher in trouble, I just want him to change how he rewards the A students to a way that is private.  After sharing this problem on Facebook, without revealing the teacher of course, I got a large amount of feedback expressing shock that this teacher would do this.  So I guess I am not too far off in my concern.  We shall see what happens next.

Meltdown

So we should not have sent her to school today after she missed a whole morning's dose yesterday.  We discovered around bedtime that she had forgotten to take her morning meds.  I can't give her both her morning meds and evening meds at the same time because that would be dangerous, so usually we try to break up the missed doses among the next day's meds, spreading them out.  But that wasn't enough to get her through the morning and she called me from the bathroom at school having walked out of a class seething mad over her geometry teacher's style of teaching.  He always points out the students who got As on quizzes and tests and has everyone applaud for them and they get homework passes.  This drives Caroline crazy.  She thinks she is being humiliated along with all the other non-A students.  What do you think about this practice?  I have mixed feelings about it.  He also plots all of the grades on a bell curve, without the names, but she thinks that everyone knows she is the one with the lowest grades.  She is a little paranoid.  Anyway, finals start next week so hopefully she can get back on track this weekend.

The IEP is Working, So Far

I am glad to say that the IEP accommodations for Hannah seem to be working.  She may not be doing great but the accommodations for which we asked are being implemented.  Yesterday I contacted the Special Ed head (who has been truly wonderful) to tell her about how Hannah bombed the last geometry test because she was "off" and froze up at the beginning of the test and that we were asking the teacher for a retake.  She contacted him to make sure he would allow this.  He contacted us per our request and agreed she could retake it.   Whew!  He also said that she could have as much time as she wanted for tests, including the final next week, and she could take it in study hall if she wanted to.  So we are quite happy with this.  Now, whether she will do better on the retake or do ok on the final is not guaranteed.  There are so many factors that determine how she does:  are her meds right, did she get enough sleep, how will her short-term memory issues affect her recall??

So far she doesn't have any Ds of Fs for the semester.  We are praying that this will be true after the finals too.  Poor kid, she is so stressed out.  Life isn't fair to her, but life isn't fair really for most of us.  I tell her it could be so much worse.  I don't know if she believes me but it is true.

The "Alternative School"

There is a school here, a charter school, just around the corner from our house practically.  The mission of the school is to provide a positive learning environment for kids with learning differences.  The reputation of the school, as I have heard from other people, is that it is a "last resort" school for kids in danger of dropping out of high school.  It is very small and very structured.  I want to look into it and believe that it might be right for Caroline, but the kids look pretty emo if you know what I mean.  I don't want to make snap judgments, but we don't want her hanging out with the wrong crowd.  Sigh.  Nothing easy here.

Full Blown Panic Attack

Caroline had a major anxiety attack tonight over the coming finals in Geometry.  She apparently feels completely lost, despite the two to three times a week Mathnasium sessions.  She says that the teacher moves fast, he doesn't explain things well, he humiliates the kids who don't get it, etc.  I emailed him earlier today and the Special Ed head who wrote up her IEP to try to get to the bottom of these complaints.  She thinks she bombed a test today after freezing in the beginning.  Now she is worried she will fail the finals and her hopes of playing lacrosse on a high school team as she has dreamed will be lost.  We are pretty worried about this too, only because the hope of playing lacrosse is what has kept her striving academically.   There isn't much else in her life that is positive.  Tonight she was getting so worked up, crying, angry, freaking out.  Not a pretty scene.  She says her short term memory issues stem from the concussions.   I don't know that the concussions are the main problem so much as the meds that slow down her thoughts.  

This whole fall foray into public school has given me a new understanding for the first time why sports might be truly advantageous to disadvantaged youth or to the child who isn't a genius.  I never really got this before.  When a child has very little in their lives that seems good and positive, playing on a team and being successful there might be the only incentive for trying harder in the classroom.  Having a gifted athlete who struggles so much academically,  I now see why one cannot just dismiss an obsession with a sport as superfluous or even a waste of time.   But the academics have to be there.  We are doing everything in our power to help her get there, including hiring a Biology tutor, and now a private Geometry teacher.   I am praying she can hold onto her grades so she can pursue her dreams.

Discouraged and Lonely

Caroline is encountering the problem she always has: lack of friendships.  She struggles to make and keep friends and always has.  This new school experience is no exception.  She says she cries herself to sleep each night because she is so lonely.  As a parent, this is just heartbreaking to hear.  Not sure what to do, but we will be looking at various options.  The church youth group isn't turning out to be what she had hoped.  And her younger sister seems to be thriving in the same youth group and at the same school.   We still might look at smaller schools.  So hard to know what is best!  She really wants to "fit in" but just doesn't have the social skills to do so and doesn't want to really.  She wants friends who are like her, not like the popular kids.  And the academic side is definitely a big struggle.  I am as discouraged as she is right now.

Choosing to Be Thankful When You are Not

This can be a really, really hard time of the year. If your child is unstable, trying to enjoy Thanksgiving and the ensuing holidays can be a nightmare, or at least very disappointing.  Caroline is stable this week so I am not worried about her.  But my heart goes out to those of you who are in a different situation.  We have had Thanksgivings where she was hospitalized or when she was home and life was hard and chaotic.  How can one be thankful when everything is crumbling?

I think in those times you have to get down the deepest things, the things that are true regardless of your circumstances:  God is still good, He still loves you and your child, He has plans that are bigger and more complex than we can understand right now, and all is not lost because of this illness.  Be thankful for the small things:  the roof over your head, food on the table, that one friend who hasn't abandoned you, that one family member who "gets" it, the beauty of the fall.

We all screw up, we all say things we shouldn't say and do things we shouldn't do.  Sometimes our emotions get the best of us.  But we can ask for forgiveness. We can forgive.  We can start over.   His mercies are new every morning. Lamentations 3:22-23.  I think the writer would agree that they are new minute by minute.  So stop beating yourself up and start receiving grace.

What The?!?!

I am astounded tonight by something we just found out about the last lithium level that was done in October, the one that the nurse practitioner at the psychiatrist's office said was 1.6, or  "extremely high."  Well, this afternoon my husband picked up a hard copy from the lab of the October lithium level test and the most recent one done last week.  The October test says .9, well within the normal range!!  And last week's read .8!!  So, what in the world happened? How did the CNP get this lab result so wrong? Was she lying to us?  That would be crazy but we have thought she is weird enough that maybe that isn't so crazy.  So we had reduced her lithium by 150 mg, resulting in some instability, because we were given the wrong value for her lab???   I am calling the practice tomorrow to try to get some answers.  And I am calling the lab to double check.  We are trying to switch to a psychiatric practice an hour away in Denver anyway to try to find the top docs.  We have learned that driving an hour to get the best care is worth the drive.  The University of Colorado has a hospital there that seems to do a lot of research in psychiatry, and there is a fantastic Children's Hospital there with a psychiatry speciality as well.  Colorado Springs has a surprising lack of good resources it seems for adolescent psychiatry.  I am just so disappointed with this whole situation.  Poor Caroline.  I really hope that this whole roller coaster wasn't for nothing.  Her scrolling vision issue isn't completely gone, but better.  Now we are looking at getting her a Biology tutor because her teacher seems really dull and unhelpful.  Still considering looking around at the charter schools in town to see if any might be a good fit for her next year, or even this year.  As always, so many balls to juggle!

Destabilized

Well, just as we feared, the reduction in the lithium dosage has resulted in mania.  We are going to increase the Seroquel by another 50 mg per her doc, but I am wondering if increasing Lamictal would be a good alternative.  She is beside herself about the med changes and very worried her year at school is going to be irreparably damaged by all of this.  Big blow up tonight.  Oh joy.

Missed Comments

I am so sorry but for some reason I stopped getting email notifications on comments.  I really like to respond immediately, so my apologies! I will try to keep tabs on your posts!

Lithium and Kidney Damage

The news we all dreaded came to us this week:  Caroline's lithium blood levels are way too high and we have to reduce her lithium dosage even if it destabilizes her.  Great.  We are going to try adding 50 to 100 mg more of the Seroquel XR to try to counteract mania but she is already at the max of 800mg.  She has been on Lithium for five years and it has been such a great mood stabilizer for her and there is no other drug like it.  With all she has gone through this fall already, we were really hoping that a big med change was not going to be added to the mess.  But her kidneys are truly at risk now so we can't ignore this.

We took the advice of her IEP team and dropped Spanish for the year, moving her instead into a special ed resource room study hall, which she can skip to sleep in with no consequence.  The team has been so amazing and I am so thankful for their kindness and understanding.  She will have to make up Spanish possibly in summer school.  But this way she can focus more on her core subjects.  At the end of this semester, we will be arranging her schedule again so she has no first period class and can start later.  Again, amazing accommodation!

Bipolar Disorder in Children...

...is devastating.  As much as cancer, if not more because no one knows what to say or do when you tell them your child has a serious mental illness.  I still feel very hesitant to tell people that I am getting to know about her disorder.  I have experienced rejection as a result and so has she.  The good news is that the older she gets the less obvious it is that she has bipolar disorder as maturity has kicked in.  Hang in there, it can get better even though it will never go away.  There will be bad days and days that are not as bad and moments of true joy.  She asked me last night why God has allowed this in her life, she always feels like life is against her.  And it does seem that as soon as she gets going, something knocks her down, a med stops working, or side effects interfere with her life, or her education is interrupted by instability.  I get her pain.  I want to make it better.  I can only pray and hope it does.

Accommodations Finalized

We had the "final" IEP meeting today, with the school psychologist, social worker, school nurse, head of special ed and three of her teachers in attendance.  Caroline was supposed to be there but I preferred she wasn't this time because I wanted to talk about her freely as opposed to the last IEP meeting which she attended.  Basically, my assessment of the meeting on a scale of 1 to 10 was a 10, as usual.  This school's IEP team rocks.  We were able to come up with many accommodations including extra time on tests and extra time to compete assignments.

Even so, I am really disheartened by the end of quarter grades.  She ended up with three Ds, two Cs and two Bs.  I am discouraged by her inability to keep all the balls in the air at the same time.  As soon as she focuses on bringing up her grade in one class, she loses focus on her other classes.  One of the accommodations may be to drop one or two of her classes and to add in a resource period with the special ed head to provide some more oversight for her academics.  That could be a good idea.

Honestly, I am just tired of dealing with this today.   Riding an emotional roller coaster all the time when you have a bp kid gets old.

To top it all off, the reduction of the Lithium to address the vision/dizziness/headaches has resulted in a manic swing, so today she went off on a kid in PE and she has been verbally belligerent tonight, very easily irritated and angry.  Tomorrow we will go back to the previous dose of Lithium .  I made another psychiatry appointment for Monday.

Tomorrow we have parent/teacher conferences at the high school.  My husband will try to get with Caroline's teachers and I will go to see Jane's teachers.  Thankfully Jane and Mae are both doing just fine in school so that is something to be grateful for.

Vision Therapy Evaluation

Caroline had an evaluation yesterday with a Vision Therapist to ascertain if she has a vision issue that is not readily detected by a regular optometry evaluation.  Sure enough, she does.  She has a tracking problem, where her eyes do not track what she is seeing simultaneously.  This in turn results in the double vision she has been seeing.  We are so relieved to know that finally have a solution.  Unfortunately she needs special glasses to the tune of $450!  But at this point, whatever works, right?  They are tinted as well to help with the glare from the fluorescent lights.  The vision specialist also recommended therapy but we will see if the glasses take care of the issue as vision therapy is expensive and not usually covered by insurance.  To learn more about vision therapy, go to www.visionhelp.com.

Chronic Lithium Toxicity/Nystagmus

After doing some digging, I have found that lithium, when at chronically high doses, can cause scrolling vision (nystagmus) and headaches.  So a few days ago, as an experiment, for which I take full responsibility, I reduced her morning Lithium dose by one pill, 300mg, and the next day she had neither the vision issues or the headaches.  But by the afternoon she was swinging into mania, so we went back to the regular dose the next day, and, voila, scrolling vision and headaches.  Again, I would say, never reduce or stop a medication without doctor's approval!  I only did this knowing we were going to see the psychiatrist within two days and I needed some information to give her regarding the link between the lithium and her headaches.  We have also been doing this for almost ten years, so I know what to watch for.

A month ago, when we mentioned to the nurse practitioner at the psychiatrist's office that she was having these issues, she did not mention this possible connection between lithium toxicity and acquired nystagmus.  Either she wasn't aware of this or just forgot or something.  The bummer is, had we known, maybe we would have reduced the dose weeks ago and she would not have missed so much school and avoided an MRI .  We went back to see her yesterday and this time I insisted on a blood level for Lithium and also to titrate down the dose.  She agreed, so today she got 150mg less than usual in the morning.  We shall see how her day goes. I am really, really hoping this has been the source of the problem.  If she can just stay in school consistently, I just know she would perform so much better.  The weird thing is that if the lithium is at a toxic level, it happened sort of by itself, without an increase in the dose.  I guess these things can happen.

On a brighter note, Caroline's grades are not as bad as we thought they were at the end of the quarter.  She managed to bring one of her grades up from an F to a B- after retaking a test that the Geometry teacher graciously allowed her to retake.  She still has two very low grades in other classes, but the rest are As and Bs.  She knows that she won't be able to play lacrosse in the spring if she has even one failing grade or more than one D.  With that in mind, she is promising to work very hard to bring up her GPA.  She is truly an awesome lacrosse player (says the coach) and it would be such a shame if she is shut out of the game.

Bad News at the End of the Quarter/IEP

She is failing or has a D in almost every core subject. Obviously this is not good.  We need to get this ship turned around soon or we need to look at other options for her schooling.  She is still having the scrolling vision and headaches, which I am strongly suspecting in due to too high level of Lithium in her blood after researching chronic toxicity symptoms of Lithium.  She sees the psychiatrist on Wednesday and we will ask for blood work and a slow titration down on this med.  Her thyroid biopsy was postponed as the radiologist felt it wasn't necessary.  Still waiting on the results of the brain MRI.

The IEP meeting is next week.  Thankfully my husband is here and can be part of the discussion.  I am feeling quite discouraged by this first quarter, between her very real physical issues and the confusion over her schedule in the beginning and now the resulting poor grades.  Definitely doubting our decision to throw her into a big school.  As great as this IEP team is, she may need a smaller environment and more intensive help than a big public high school can give.

More Missed School/Health Mysteries

This has not been easy.  She is feeling very tired, more migraines, wants to sleep all the time.  She has an MRI today to see if there are physical causes for the migraines and scrolling vision, but I am taking her back to the family doctor today to ask for blood work to rule out anemia and mono.  Got to cover all the bases.  Maybe liver and kidney panels too.  Her thyroid biopsy is on Monday.  When I called the recommended pediatric neurologist they said they could see her at the end of February.  Yeah, I don't think so.  So now I have to start the referral process over again to find a different practice.

In the meantime, I have been feeling completely exhausted myself, wanting to sleep all the time too.  I have had a virus, but I hope this fatigue goes away.  I have a complete household to unpack and I have made very little progress between Caroline's many phone calls from school and meetings with staff, etc.  I think I have spent as much time at the high school because of her issues as she has been absent from the high school.  I seriously do wonder if homeschooling her would be easier.  This is getting old fast.  We need answers soon or we might pull the plug just to keep her grade point average from going so low that getting into college would be seriously jeopardized.  I don't know if her meds need a big change or if all of these issues are being caused by something else.  Frustration is the mood here and deep concern.  She really wants to succeed in going to school and getting good grades.  This isn't avoidance.  Lord, please show us what is going on!

IEP Meeting Went Great, But...

Yesterdays big IEP meeting went great.  I am very impressed with the staff that attended.  Everyone seemed so eager to help Caroline and quite interested in her case.  I couldn't have asked for a better meeting.  The "but" is that she is failing Geometry, has several Ds in other subjects, which are likely due to all the school she has missed in the first five weeks.  Very discouraging to her and to us.  I am meeting with the Geometry teacher this morning to try to ascertain what is going wrong here.  She says he isn't very helpful in terms of his instruction in class.  The Mathnasium tutor spent two hours with her yesterday trying to help her understand the concepts.  She made some real progress there but my concern is why she isn't getting this kind of instruction at school.

Always, always, in the back of our minds are the questions, "Is this the right learning environment for Caroline?  Can she learn and succeed here?  Can she keep up with the pace given all of her bipolar related sick days? When do you pull the plug if it is apparent that she is too discouraged about her grades?"  So many hard questions.  I think we are going to give it a semester and see how accommodating her teachers will be and then decide if a big public high school is the right fit for her or if she needs a much smaller environment.   The last thing we want is for her to be so frustrated with inflexible teachers that she stops caring and gives up. 

Problems Abound

Caroline is not doing so hot in her classes at the public school.  The big IEP meeting is this Wednesday.  She is behind in several classes because of all the school she missed the first three weeks due to migraines and vision issues which we now think were somehow related to the Lamictal.  We lowered the dose quite a bit but then she got depressed so we upped it again, but not as high.  She needs a needle biopsy of her enlarged thyroid.  So many things going on!  She has a failing grade in Geometry, a D in Biology, and had tennis elbow this past week and couldn't use her writing hand.  Can anything else go wrong???

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MRI

After seeing her regular doctor yesterday, we got an order for an MRI to make sure nothing serious is going on in her brain causing the scrolling vision and headaches.  And we got a solid pediatric neurology referral.  Hoping and praying for answers to this debilitating problem.  She sees the psychiatrist on Monday too.   Still waiting on the thyroid ultrasound results.

Vertigo Mystery

Frustration again as Caroline calls me from school this morning to report that she was having scrolling vision and vertigo again, starting half way through her first class.  I am at a loss so we are back to the doctor this afternoon.  We had not gotten the call from the neurologist so we are going to be asking for that consult again ASAP.  I divided her morning med dose of the lamictal up so she takes half of it at noon thinking this was the problem, but I guess not.  This issue happened this weekend on Sunday so it isn't just occurring in school.  She is missing way too much school so early in the school year.  I am praying for answers.

Finally, A Good Day

We had a great day today, despite waking up with a migraine (me.)  Caroline got to all of her classes just fine and the school counselor who is in charge of the IEP process called me to give me a time for the first official IEP meeting where everyone will be there.  I felt loved.

Also, Caroline had the thyroid ultrasound today but we won't know for 24 hours or so what they might have found.  Hopefully nothing.  My medical mystery child.

This is the view from my back porch tonight.  Beautiful.

The Easiest Kid

How strange and unexpected that I would call Caroline my easiest kid.  You would think that with all her disorder has put her and everyone else through, that I would be saying the opposite.  But this is God's hand at work in our lives.  He turns ashes into beauty.  Having been separated from us so many times, once for five months, due to both short and long term hospitalizations, she developed a faith in God that is greater than her sisters' and a respect for us that shines.  In spite of her irritability, which is a daily struggle, she is quick to say sorry and please forgive me and to tell her dad and I what great parents we are.   I know she honors us.  Her sisters, whom we love deeply, do not often show the depth of kindness toward us that she exhibits.  Pain and sorrow have done their work in her heart, and the fruit is love.  Would I wish for other kids to go through what she has to get to this place?  No, but the blessings of God have come to us through hardship.  I am thankful for His sovereign grace.  He has done a marvelous thing.

Really?!?!

Yesterday, after I got yet another phone call from Caroline who in tears because she couldn't find her PE class in the gym when they were supposed to be there, I flew down to the school.  I had really
had it.  I marched into the attendance office and declared that we had a major problem (I wasn't yelling but almost) and that we had to fix it NOW.  What it boiled down to was that she had been going to the wrong PE class for two weeks and no one figured it out but me.  That is ridiculous.  The teacher whom she was supposed to have was marking her absent after Day 1, but the wrong teacher somehow had her on his roster and was marking her present.  So attendance thought she was in the right PE class.  By going to the wrong PE class for two weeks, she was going to the wrong lunch and then missing half of biology!  She was being told by attendance she was supposed to be in B lunch, but the PE class had A lunch and so she was utterly confused by everyone and everything.  I am bewildered as to how this could have happened.  My poor kid!  And everyone was blaming her for not being in the right place at the right time!

Thyroid/Migraine Link?

The doctor visit for her migraines today revealed that she has an enlarged thyroid.  So we will see after the labs come back if she is having a thyroid imbalance or if we need to do a scan.  Lithium can kill one's thyroid so she has been tested for years for thyroid issues and up until now we haven't had a problem.  We did also get a neurology referral to try to get these migraines under control.  Thyroid issues can cause migraines as well.

Today was another screwed up day at school.  She showed up for PE and no one was there.  So then she went to attendance and again the lady was short with her.  Caroline just needed someone to go find the PE coach for her.  This whole A/B schedule and A/B lunch thing seems to be confounding her, especially since she was first told she had one lunch and then told she had another.  I am beyond frustrated at this point.  I put a call into her counselor and the PE coach to find out what exactly seems to be the problem.  Caroline is beside herself and so am I.

School/Migraines

Well, at this point we really have a problem.  Caroline is continuing to have daily migraines at school. She swears she isn't stressed and loves school and her behavior confirms this.  But about an hour to an hour and a half into the day, she comes down with blurred vision and migraines.  So we have to pick her up from school.  She has a doctor's appointment tomorrow with a regular doc and I will be asking for a neurology referral.  Her meds haven't changed so that can't be the source, at least I don't think so.  She isn't having these issues on the weekend, so I am suspecting a trigger at school, maybe allergens or the florescent lights.  So frustrating that here she is finally at such a great school only two weeks into the year and she has missed so many classes! Doesn't seem fair.  If this continues without remedy, we may be looking at the online high school or homeschooling.

Migraines?

Don't know why exactly, but Caroline is still experiencing scrolling vision, which was followed by a migraine yesterday, causing her to miss most of school.  She says she has migraines without the scrolling vision, so they may be unrelated.  I am dividing up her Lamictal dose today so that she doesn't get the whole morning dose at once.  She can take the rest when she gets home from school.  Really bummed that she has already missed so much school only two weeks into the year.   Not a good start.

Scrolling Vision/Med Issues

It seems that whenever Caroline's meds are too high, she gets this weird scrolling vision pattern.  She called from school this morning to say she was having these vision issues again.  Perhaps we just need to reduce her Lamictal.  Time to call the pdoc.

Great IEP Meeting!

I am just thanking God this morning for the amazing people working at this high school in the counseling and special ed departments.  The meeting this morning went superbly.  I couldn't have been happier or more encouraged by their passion for helping kids like Caroline succeed at this school.  They were compassionate, knowledgeable, competent and eager to do whatever possible for us.  I am so humbled that God would place us in this school district, at this school.  Of course, time will tell.  But I have never felt so good about a meeting such as this one.  I think this will be a good year for Caroline.

Enough Already

I have had it with the attendance lady, who seems to think Caroline is a truant.  I had to call her yesterday to ask her to kindly remove the two absences recorded for the first day of school when she was lost and went to the wrong classes.  She balked but I persisted.  Then yesterday her English teacher marked her absent when she was in class, and we got yet another truant notice from this attendance lady.  I immediately contacted the teacher who was apologetic and verified that Caroline was in class.  Then I called the attendance lady and left a message.  Apparently this lady walked into Caroline's study hall and chewed her out about her "absence" from English class and told her she had better have an excuse, etc.  I am so disappointed in this lady's lack of grace toward a kid who is brand new to the school and who was obviously lost the first few days of classes.  Give me a break!  I called the principal because her demeanor has been so unwelcoming and honestly I think she owes Caroline an apology for assuming the worst about a kid who is trying so hard to do the right things.  

As a result of this mess, I have pushed the IEP meeting and got a time scheduled for Friday morning to start the ball rolling.  She needs grace and understanding not punishment!

Doing Better

Well, Day 3 of high school went much better for Caroline.  She had no problems finding her classes and went to the right lunch period.  Whew!  She loves PE, which most kids hate, like I did.  I guess she was the fastest girl running the mile, the second fastest behind a boy.  Yep, she definitely excels in athletics.

The school district scheduled the back to school night for her high school and for my middle schooler on the same nights at the same time which is completely idiotic.  I complained to both schools and to the district.  How do they expect parents to be able to be in two places at the same time?  And I have two kids at the high school, so I can only meet the teachers of one of them.  Not happy.  I will have to go to meet Caroline's teachers since she is likely to need the most interface between school and home.  But my other two will feel shortchanged.

Still need to call the school about the IEP.  That is on my list today

Oh Dear

Well, this second day didn't go so great either.  She went to the wrong lunch period and thus ended up in the wrong classes again.  I marched down to the school after she got home to straighten everything out.  The technology office helped me tremendously and I think all should go better on Monday.  I am going to complain to the principal however about the incredibly unhelpful front desk admin lady.  She made Caroline feel like she was in trouble for not being in the right classes.  My mama bear instincts have come out and I want to give her the what for.  I will be calmer on Monday.  I wish I had the IEP in place before this week.  A lesson learned here.  I was hoping Caroline would have done better, but I am seeing that she is going to need more help.

All is Well That Ends Well

In spite of the crazy day Caroline had at her first day of school yesterday, she seemed to stay positive.  She actually ended up going to eight classes, just not the right classes or the right times.  So when we thought she had just skipped three of her classes, she was actually in a class.  But my ninth grader did the same thing with one of her classes, so she was in good company.   I emailed her teachers and explained what had happened and hopefully they will be understanding.  I do need to clue in the nurse at the school about her meds and also get that IEP going.

Major Mix-Up in the Experiment

Disaster struck today on the first day of school.  Caroline told me yesterday she was having some scrolling vision problems and I made a mental note of it.  Usually that means one of her meds is too high.  I was trying to think if I had double dosed her or something but everything seemed fine in her med box.  Well, off to school she went today and two hours later she was trying to call me to tell me she was having bad vision problems.  I had my phone off because honestly I had gone back to bed after I took everyone to school because I had a migraine the night before and was still tired.  Then I get a call from the school saying she was marked absent for three classes and they couldn't find her.  She had gone to the nurses office but then had left but then didn't show up for class. Oh boy.  Not good.  Then I realized why she was so off: I had forgotten to put her birth control pills for her acne in her med mix, which meant her Lamictal levels probably doubled and that was why she was so dizzy!!! I could have kicked myself for messing up her first day of school!!!! Ugh!!!!  I feel HORRIBLE.  I think I will show up to pick her up with a venti sized hazelnut latte to try to make amends.  I can't believe this happened.   I am worried she isn't going to want to go back.  And what her teachers might think.  I need to email them to explain the problem.  Truly I am so sorry for the mistake I made.  I am praying that she will recover from this.

Start of the Great Experiment

At least an experiment is what this feels like, having Caroline starting at a great big public high school today.  One thing I had kind of forgotten about, why I don't know, is how sensitive she is to noise and chaos.  Today would be nothing but noise and chaos in the halls as all 1500 students try to find their classrooms at once.  Talk about overstimulation.  And the fact that she was having a lot of problems with getting her locker open yesterday because she kept forgetting the right-left-right sequence should prove interesting.  Poor kid.  Combine the memory issues with the processing speed issues and you've got quite a challenge when it comes to things like this.  She gets lost really easily too, turned around and confused.  I was praying that today would go smoothly though I am preparing for bumpy.  I wish she could have done what her sister did as a freshman yesterday.  The freshmen got to go one day early and were led around the school by friendly, smiling juniors and seniors.  

Speaking of her sister, this is the first time in a very long time, maybe twelve years, that Caroline and Jane have been at the same school.  I am nervous about how this will go.  I really wanted them to have their own high school experiences, and tried to get Jane into another public charter high school here, but she was wait listed.   Caroline does things unintentionally that mortify Jane on a regular basis.  Jane needs to grow in her maturity and give her sister a whole lot of grace, but at 14, I am not sure this is going to happen real soon.  And Jane has already made a dozen friends after yesterday's orientation and has after school plans to go with them to a yogurt shop.  Caroline will likely struggle to make and keep friends.  So this whole experiment may go as we hope and pray, or may turn out to be a bust.  But we are giving it our best shot.  Plan B is always in the wings.  There are many charter schools here and if Caroline needs a much smaller environment, we will look at these other options.  Private school is Plan C but the money would be an issue.

I hope that start of your child's school year will go really well, with very few bumps along the way.  But if it doesn't, you are in good company.  Hang in there, and keep advocating for your child!!  :)

Countdown

Counting down the days until Caroline starts at the public high school here next week.  She is so excited.  Today I called the district to initiate the IEP process.  With the concussions, the bipolar disorder, the ADHD, the Non Verbal Learning Disorder, and the extremely low processing speed, she should qualify for some accommodations and modifications.  So we shall see how next week goes.  She got into Geometry which was huge, but we are choosing to have her repeat Spanish I.  Last year was such a wash.  Better to start fresh.  She met the lacrosse coach at the school who watched her do some drills with the other girls and the coach was pretty impressed with her skills.  No sports this fall though.  Caroline said she just wants to focus on academics anyway.

She had her first meetings with both her new psychologist and her new psychiatrist.  Well, I should say the NP at the psychiatrist's office.  The psychologist meeting went much better than that with the NP.  So we are switching her over to another psychiatrist in the practice who is likely more suitable.  But to find these new providers is huge.

Mathnasium is continuing to make a huge difference in her Algebra skills.  Worth every penny.

I am looking into a part-time job but have no idea where to start.  So many news things all at once.

I will check back next week after the first few days of school.

Adjusting

We are all adjusting to life in this amazingly beautiful state of Colorado.  We have been here almost a month now.  The fires are gone and the mountains are so clear every day right from our backyard.

Caroline loves it here.  She is excited about the start of school in a few short weeks.  Already she has met some lacrosse buddies to throw the ball around at the high school just a few minutes away.  Not scrimmage, just non-contact drills.  My other two that are here are slowly getting used to living here as well.  We have thrown ourselves into church, youth group, ballet, art camp, math tutoring etc. to try to fill up their days so that aren't missing their old life as much.

We still need to find a new psychiatrist and psychologist.  So hard to know who is good and who isn't! Wish we could have taken our old docs with us!!

I will write more when school starts.  Thanks for reading and commenting!

New Everything

Well, we have moved across the country to a new environment, new house, new school district and new everything.  We have only been here for two weeks and are slowly adjusting to a beautiful but unfamiliar place.  Yesterday I registered Caroline for the public high school around the corner from us.  I really want to believe she will do well there, but that nagging doubt persists.  We are going to try it, but as always, we are prepared to go to Plan B.  Actually I have no idea what Plan B would be.  I guess we will cross that bridge if we come to it.  She is so excited at the prospect of new friends and a top-notch lacrosse team.  We are much more cautious.  She started back with Mathnasium here but she isn't clicking with the nerdy older guys who are running the place.  They do look like mad scientists and their social skills seem to be lacking.  We might try the other Mathnasium across town if she continues to struggle to understand them.

We visited a church on Sunday that has a very active and large youth group.  She wanted to go to the YG meeting that very night, which she did as it was practically around the corner from our house.  After the meeting, she was gushing with excitement and proclaimed that this was the only youth group she would be going to.  OK.  We are not so sure this is the church we want to stay with, but she can always go to this youth group even if we end up at a different church.

Finding a new psychiatrist and psychologist is next on the list. As I am sure you understand, finding the right providers is an important key to success for kids with bipolar disorder.  I am dreading that first visit with a psychiatrist when he or she looks at her med list. Some docs get it and some really don't.  Blah!

I am also going to initiate the IEP process soon, which we haven't had to do since the 5th grade.  High school is a whole different ball game.  So much to do!

Hope your summer is going well!

Public School?

After the last meeting with Learning RX, where we got to see her post-test and talk about her 24 weeks of cognitive brain training, we face a conundrum concerning our plans to put Caroline in public high school.  The head of Learning RX  highly recommended, actually implored us, not to put her in public high school because of her short-term memory issues.  She said that she would get eaten alive academically.  You see, the post-test revealed huge gains in most of the cognitive areas that she has been working on for the last six months at LRX, such as auditory processing, visual processing, processing speed, etc.  But her scores in short-term memory, long-term memory and working memory remained abysmally low, like in 1% percentile.  We were so disappointed to see this obvious learning disability persisting, but they felt that another 12 weeks of LRX training, focusing exclusively on these areas, could help.  That would be great, except that we probably can't afford to do this.  The director has a son with this same learning disability and she has taught both gifted and special needs kids and so she is speaking from experience.  She says Caroline wouldn't be able to keep up with the workload at a big public high school and deal with the social aspect as well.  So now we are unsure of our plans to put her in public school in Colorado.  The LRX director recommended homeschooling her another year, but I just don't know that this is the best thing for me.  When do my needs supersede my daughter's needs?  Do they have to be contradictory?  We would look around for a small private school, but we can't afford it at all.  So this is really a new problem.  Well, really an old one.  I hate that nothing is ever a great fit for her.  She really does best for other teachers, having the same routine every day, having a definite schedule that I don't seem to provide to the degree that she needs.  She is so excited about going to public high school that I am dreading having to tell her it may not be the best thing.  Or it might.  Sigh.  I can't think anymore about this until we get to Colorado next week.  Right now I have to organize and pack.  I think I am going to consult an educational consultant out there to help us navigate the options for Caroline and determine what is best.

On the bright side, the Learning RX training gave her a boost to her IQ, about 13 points, so that is good news.  She is still below average, and we hope that if we can continue therapy for the memory issues, which bring down her IQ score pretty significantly, that the score will rise.  She was gifted at age 5 and 7 when tested.  Very hard to see her scores now.  Again, whether this is medication related, or bipolar related, or something else, I am not sure we can know.

Last week we said good-bye to Caroline's amazing psychotherapist, her pediatrician since she was born,  and to her psychiatrist, who has known her since she was 7.  This week we say good-bye to another friend, our family therapist for the last 9 years.   I know I will shed some tears.  We have been very blessed to have some truly great providers for Caroline and our family here.  Now we have to start all over again.  Our house goes on the market on Monday.  We are praying it sells quickly for a great price.  Confident in God's plan and His providence.

In the Zone!

I am in the zone as far as getting ready to put our house on the market.  Now that school is done (sort of) I am filled with new energy to purge, pack and prepare to sell our house and move to Colorado.  Thank goodness that my feelings have changed.  Previously, I was lacking any energy to keep sustained attention to the huge task in front of us as long as I had all of these educational issues in front of me.  But now I feel single-minded, finally!  But now I am sick, bummer.  But we are painting, fixing, rearranging, and making many trips to Goodwill.  I am looking forward to living more simply, with far less clutter, hopefully, and with more purpose to what I am doing.  Caroline is a little bored right now but she can paint, so we keep handing her things to do.  Our house is already looking so much better and I will be sad to say good-bye to the beauty of a 70 year-old, classic Colonial, even if remodeling it killed us.  Someday I would love to have an old home again, with a giant wrap-around front porch and nine-foot ceilings and wainscoting, but for the next 10 years, at least, I just want something that has everything already done to it!  Parenting a bipolar child is enough work in and of itself!

Year End Standardized Testing

So Caroline had her end of the year standardized testing today, one on one with a licensed tester, using the Woodcock Johnson complete battery.  The good news is that her math score went up tremendously from last year, so a huge thank you to Teaching Textbooks and Mathnasium and Learning Rx and also for Caroline who put in the effort.  She tested three grade levels higher than last May, so I think moving on to Geometry in the fall won't be an issue.  Whew!

The bad news is that her verbal scores, usually her best, were lower than last year's. :(  I am not sure what to make of that except that she has had two concussions since the last WJ test and so perhaps she is still being affected by them.  The tester said that she seemed to lack short term memory skills necessary for some of the sections.  Sigh.  I was really thinking her verbal skills would have gone up.  I am not sure if this is the result of the concussions or the increase in the Seroquel since last May, or if  bipolar disorder itself has contributed to the memory issues.  My husband and I have resigned ourselves to the fact that she is going to need a lot of help through high school, not only math tutoring, but likely tutoring in other subjects as well.  This is the child whose IQ at age 5 was near genius before she was on any meds or had a major episode.   Early-onset bipolar disorder really does rob kids of so much, not only of their friendships, and relationships with their siblings, but often of academic achievement.

Happy Mother's Day to You, Amazing Mom!

You are a better mom than you feel most of the time.  If you haven't given up on finding the best treatments for your child, if you keep telling them that bipolar disorder doesn't have to ruin their lives, if you keep loving them when you want to throw in the towel, you are a great mom.  Take some time for yourself today or very soon and get a manicure, or a cup of coffeee, or take an hour to read somewhere in a park, or on the beach, or anywhere away from your children.  Better yet go to www.care.com and find a  special needs sitter and go away for a day or a night or a whole weekend!   You deserve it!!

Solution

Maybe a solution.  The psych doc suggested adding a small dose of non-XR Seroquel to her nightly mix to get her sleeping again.  She thinks that the sleep issues (insomnia) triggered the aggression and explosivity and obsessive-compulsiveness.   So last night was the first increased dose and she did sleep better.  Can't tell yet if it is helping with her angry attitude though.  She has standardized testing on Monday so we certainly hope she can handle it.

Something is Wrong

Something is out of whack with Caroline.  We started to notice it yesterday.  She is acting very belligerent and OCD, and explosive.  Darn!  So I guess we go back to the psych doc for an adjustment.  Haven't seen her like this in a long time.  Sigh.  We've had smooth sailing for so long that this feels like so out of the blue.

Selling House on Front Burner, All Else on Hold

I have had to put homeschooling on the back burner for the coming a week and a half while we do a final push to finish all the touch up painting and decluttering that we need to do in order to advertise our house.  I want people to see it online or walk through and say "Wow!"  In order to do this, I have had to let go of the "homeschooling guilt" which is, unfortunately, a powerful crippler for me.  I need to trust God that He is in charge and that Caroline is going to be fine by August 15th when the 10th grade starts!  So back to the grind here...

First Date

Caroline certainly has had an exciting weekend.  First prom on Friday night, then a last minute first date on Saturday night!

Prom went very well for her, which was a concern, as every social event is for us.  She had a great time with no "incidents" and the only glitch to the evening was that she got overheated (bipolar kids do have a problem with heat intolerance because they don't regulate their body temperatures as well) and came home with a headache and threw up.  But this didn't dampen her opinion of the evening.

The date was something we didn't see coming, but we quickly made it a "big deal" so as to ensure that it would be a properly done date, and not something inappropriate.  The boy who asked her is someone she has gotten to know at a local high school while playing wall ball after school. I do remember her mentioning this very tall, nice guy and of course we were immediately on guard since we have had a bad experience in the past with people she has met when we haven't been with her.  But he asked her to go to a movie yesterday and she told us she is a very nice Christian who helps build playgrounds for needy kids.  He sounded too good to be true, so we said that he would have to come to the house so we could meet him and Daddy would have to interview him prior to the date.  She willingly agreed, almost enthusiastically, so we felt a little better since her attitude was so good.

Well, this young man walks through the door, and he is tall and blond and really good looking.  He immediately shook my hand and engaged in easy conversation.  He was obviously adept at talking to adults and looking them straight in the eye, very important!  I asked him about high school and he said he was in the pre-med magnet program and plays three different sports.  His grandfather founded a Christian ministry. He wants to be a doctor.  Smart? Check. Athletic? Check.  Servant heart? Check.  Able to talk to adults? Check.

My husband took him into the living room and proceeded to have a 15 minute talk with him about the date, including treating his daughter with respect (i.e. keep your hands off of her) and such.  My husband was also quite impressed with him and gave him his blessing to take our daughter out.  We would let him drive her there but he would pick her up, just to be sure that they were going straight there and back.

Everything went wonderfully.  We are amazed at God's goodness toward Caroline, that he would bring such a great guy into her life.  We are not hoping that this turns into anything serious of course, but we couldn't have asked for a more decent chap to ask her out on a first date.  Thank you Lord, for your grace to us and to Caroline!

Prom Beauty!

Just from the back!  I did her "Girl on Fire" rhinestone bling, stolen from The Hunger Games.

Brain Fog

Unfortunately, Caroline seems to be dealing with an onset of major brain fog in the last few days.  Can't think of what the cause may be as nothing has changed in her med mix and she is sleeping fine.  This fog is really affecting her school work and it isn't distractability like ADHD, it is more of a slowness of thought processes--more than usual.  I so wish she didn't have to take such high doses of Seroquel and Trileptal, which can be cognitively dulling anyhow.  But she is stable, and "normal," so we dare not touch anything.  Very frustrating to try to homeschool her when she is like this.  She stares at Spanish and Algebra like she has never seen them before. Hopefully this will pass very soon.  We have a lot to finish before then end of May and her state testing!

Paradoxical Reactions to Medications

I am sure that many of you out there are aware that anyone can have a reaction to a med that is the exact opposite of what was hoped for in prescribing it.  For example,  Geodon made Caroline far more agitated and rageful, even thought it is given to address these very things.  If your child seems to be getting worse, not better, on any drug, contact your doctor immediately before things spiral out of control.  Even a sleep med like Ambien can have an effect like worsening insomnia.

No Shame

A dear friend recently reminded me of the fact that we must actively reject shame when we have a child who doesn't "fit" in with the world.  We have to look shame in the eye and tell it good riddance.  We must resist shame with truth.  There is no other way to deal with shame effectively.  Guilt is specific, related to specific acts and can be dealt with through confession, repentance, restitution, and true remorse.  But shame is this horrible, nebulous cloud that colors our world with gray uncertainty.  Shame makes us hide, hide our children and hide ourselves.  We hide from neighbors, our closest friends, our church, and our schools when shame dominates our thinking.  I know this ugly foe too well.  I am afraid I struggle with passing shame onto my kids at times.  Shames strangles relationships.  The antidote to shame is always the bright sunlight of truth.  The truth is that our children are gifts from God, each uniquely gifted.  They are not mistakes.  If they have a brain disorder, it isn't your fault.  Even genetics are trumped by the truth that God is still sovereign, in my opinion.  I believe this with every ounce of my being.  When we are given a child with special needs, we are given the gift of empathy and compassion.  I am the most judgemental person in the world, so it is no accident that God gave me a child through whom I have had to develop tremendous patience and long-suffering.  And we must not forget that these beautiful kids suffer more than we do.  They are the ones who experience the misunderstanding and rejection.  They are the ones who have to rise above their limitations to succeed in life far more than we.   I see them as very dear to God.  I get mad when some of their parents don't go the extra mile to help them because they themselves are living in shame and "hiding" from the truth.  I understand that temptation, but when we step into the light and accept that our child needs far more help than we alone can give them, then we are truly loving our child in the fullest sense.  It is no accident that Caroline is doing as well as she is: a loving God is watching out for her, and we as her parents have tried to do everything in our power to help her, doing whatever it takes to give her the tools to succeed in life, even if the cost to us is great, both financially and physically. We haven't done this perfectly by any means, we have failed many times.  But when you are committed to being your child's advocate in every arena, you know that you can be free of shame and guilt and leave the results to God.

When Labels Can Be Unhelpful

After thinking about my post last night, I decided I needed to annotate it with the caveat that sometimes labels can be unhelpful.  I am thinking mainly of when a child labels themselves and uses it to either beat themselves up that they are "less than" or when they use it to manipulate those around them.  We often tell Caroline that although she is bipolar, and that means that she has to take certain kinds of medications and needs to understand how she operates, it is not the sum total of who she is.  Bipolar disorder is part of who she is, but certainly not all of who she is.  Nor would a child with Aspergers be encouraged to see themselves as "the kid with Aspergers" but rather a unique child of God with special gifts and challenges. The Aspergers label helps the parents and other caregivers to understand and interact with the child in a more helpful way, but no one should allow the child to use their diagnosis as an excuse for bad behavior.  I know of someone with pretty severe PTSD caused by horrible childhood trauma.  As a result, they have dissociative disorder, which, to put it simply, is when someone "checks out" of present reality when stressed out because they learned to do so when the nightmares they were enduring as children became too much.  The most severe form of dissociative disorder would be termed "multiple personalities."  I am no expert on dissociative disorder, but I have seen the danger of individuals wrapping up themselves up in this label and wearing it loudly so to speak, and expecting others to be able to interact with them with acceptance when they are dissociating.  The end result is more isolation, not less.  In other words, by showing too much affection for their "label" instead of the pursuit of wholeness, they tend towards manipulation of those around them and not towards real healing.  This healing would be characterized by dropping the dissociating as a coping mechanism as it would be no longer needed.  I would say this is where labeling becomes quite unhelpful and even something to hide behind.

Why "Labels" Can be Helpful

I know some parents who have really tried to avoiding labeling their "special" child.  Usually the reason lies in the fear of somehow attaching a negative association to them, perhaps to be viewed by others as "that" child who has "x" syndrome, thus affecting how others treat them or how they might view themselves.  I personally feel that resisting a label can do more harm than good.  And here is why:  if a child is struggling with some major differences, obviously stands out from their peers, and ends up in the Principal's office, or in the psychologist's office, because they can't seem to "hang" with school or their sports team, or the neighborhood kids, or work at their academic level, then seeking a proper diagnosis will lead to the right therapies, medications, and educational interventions that are BEST for that child.  I know of one parent who for many, many years has resisted "labeling" their child, which in this case means getting a solid diagnosis for their child's severely oppositional behaviors, and as a result, the child isn't on the medications they obviously need to be on in order to function and he keeps shooting himself in the foot, so to speak,  at church and at school, creating those negative associations by default.  I think Christians especially struggle with this issue because we can over-spiritualize problems.  Let's call labeling what it should be:  a real diagnosis for very real problems.  A diagnosed problem can be treated effectively with either medication or counseling or both!  A diagnosis denied, i.e. : "My child doesn't have Aspergers, or ADHD, or Bipolar Disorder, or a Sensory Processing Disorder, they are just a little strange, kind of introverted, or really impulsive, have a problem with anger, etc., and we just need to get control of this through more discipline or prayer, we'll be just fine."  Oh how I cringe when I hear this!  Maybe it is the lay psychologist or psychiatrist in me.  Help your child! Stop living in denial that they need more help than what mainstreaming can give them!  You are doing no one a favor by resisting a label.  Does a label mean that they won't succeed in life or rise above their issues??? No, absolutely not!  But to just coast along and hope that they do better eventually won't help your child in the least!  Be a parent, suck it up, and go back to the psychologist or psychiatrist or educational therapist and LISTEN to them.  Get them the weekly therapies they need, the medications that can help them function and stop over spiritualizing their issues or downplaying them!! The brain is an organic, living thing, no less structural and chemical in nature than your pancreas!!  I get so frustrated with folks who won't go the extra mile to help their child because they are afraid of a "label" or of medications or they are too prideful to admit their child needs major intervention.  Prayer is wonderful, but God also has given us highly effective medical and counseling resources right in front of us and if we don't use them we are looking a gift horse in the mouth.  Ok, I am off my soap box now.

Prom

Caroline is eligible to go to prom at the small private school in which she is still officially enrolled as a homeschooled student.  So we are allowing her to go since the poor kid has basically been sitting at home since October, no lacrosse, no friends with whom to interact.  Today we went prom dress shopping and she was so very happy.  I made an appointment to get her hair done too.  With all she has been missing, I am happy to give her the chance to do something really special and to feel like a princess for once.  I think her older sister is jealous even though she has no reason to be.   The girl went to three senior proms!  Time for the little sisters to have their time in the spotlight.

The Home Stretch

Oh, this child is so easily distracted!  We have only another six weeks before the end of school and I am really having trouble keeping her on task with homeschooling.  Her head appears to be in the clouds.  With spring break and my mom visiting from CA, we are already behind.  And now I have to go out of town to help our college student pack up her dorm room.  Then we will have one more in the mix!  It is amazing how much less crazy our house is with one gone, even though it still seems pretty crazy.  With four home, everything is just multiplied:  the laundry, the dishes, the mess, the appointments, and so on.  And we are supposed to be showing our house soo.  Yikes!

I guess what I am very grateful for right now is the fact that Caroline is stable.  If she weren't, this would be impossible.

Happy Easter!! (Late)

For those of you who celebrated, Happy Belated Easter!  I was driving back from the Outer Banks last night, listening to Indelible Grace, singing along, just joyful that Christ has not only risen, but lives now and forever, to redeem the lost, to make all things new by His power.  Isn't that what we long for?  For God to make everything right?  For Him to "resurrect" what is dead?  When you have a child who suffers from an as yet incurable illness, you long for the day when they will be free of it.  Easter is a yearly reminder that freedom is here and is not yet.  I believe that Caroline will be free of bipolar disorder someday, if not in this life, than in the next where there are no more tears, no more suffering, but true healing, true redemption.  Even if you don't share my beliefs about Jesus, I know you wish for a world free of mental illness.  Why do we long for something we don't have?  Maybe God put that longing in our hearts, because we know that this world is not as it should be, that something is wrong, something is terribly broken.  I believe He did give us this innate sense that things should be different, good, whole, pure, fair.  He has put eternity in the hearts of men.  Ecclesiastes 3:11

Mathnasium is the Bomb!

I just have to shout that Caroline got her first 100% on an Algebra lesson!!  Oh how I wish we had known about Mathnasium a long time ago, but I think they are fairly new to our area.  She is now doing Algebra first thing in the morning, eagerly, because she "gets" it.  Money well spent!!  If I lived in a town without one, I would find a way to buy a franchise because the way they tutor really works.  One on one three days a week, using your child's own curriculum.  Perfect.

Really Wish I Had Some Manic Energy Right Now

I would never wish mania upon anyone, adult or teen or child, but when I hear about the things some people accomplish while they are way too "up" I get a little jealous when I seem to have no energy at all.  No amount of caffeine seems to help me these days.  Or exercise.  I think that the task of getting our house ready to put on the market combined with the responsibility of  homeschooling, combined with no time in my house by myself has amounted to more depression for me.  I just want to sit and stare at the walls but of course I can't.

I made myself sort photos today, just sat there on the floor, boxes all around me, trying to purge the pics that the kids took of dead animals or whatever, and to save others from some horrible fate like being stuck together and fading rapidly.  That was all I could get myself to do.  But maybe that is OK.  One corner of the bedroom is filled with photo albums (mostly unfilled) and photos and report cards and picture frames (unfilled) and I have dreaded attacking this project for so long.  Because once you get into it, you can't really stop and it is very messy.  So now my bedroom is really, really messy, more so than it usually is.  So now I hate going in there even more.

Having a special needs child makes life messy.  Complicated. And interesting.  And you can't be "normal" because they are not "normal."  I envy those who have normal struggles.  I envy people whose kids are in school all day, five days a week.  They have clean houses.  And photos all neatly in Creative Memory albums.  And pretty bedrooms.  And time to meet friends for coffee.  One day...

Never Forget to Do This if You Encounter This Med Situation!

If you have a female bp child who is on bc pills for acne (or whatever), and on the mood stabilizer Lamictal, and you accidentally run out of the bc pills and they aren't in her med mix for a few days, DON"T FORGET TO LOWER THE LAMICTAL DOSAGE FOR THOSE DAYS.  I forgot, unfortunately, which meant that the  Lamictal levels in her blood jumped above what they should have been and she began to get blurred vision, headaches and exhibited other signs of being "off" including extreme irritability and no focusing ability at all for school.   I had heard about others having to do this adjustment, but I didn't think it would be so imperative, but it was.  We retrieved the LoLoestrin from the pharmacist and now she is back on schedule, so hopefully the blurred vision and headaches will dissipate shortly.  It is amazing how much of a balancing act this is for these kids between hormones, circadian rhythm changes and meds!!

 I don't know how she is going to manage her meds on her own when she is no longer living with us.  That is a scary thought.  I am so in tune to her subtleties, but she isn't always in tune with subtle changes in her moods that might mean trouble ahead.  I hope she can live near enough to us that we can always have a good feel as to how she is doing, if she taking her meds, if she seeing a good doctor, going to her psychologist on a regular basis, eating well, sleeping enough, etc.  We will have to let her grow up and be an adult and take responsibility for herself in all of these ways, but we hope it will not be a rude awakening, but rather a gentle hand-off.  Lots of prep time between now and then, that is for sure.  I need to test her over the summer to see if she can start taking her meds without us reminding her, asking her if she took them, reminding her again, because she needs to care enough about herself to take them on time, every day, so she can be a functional adult someday.  

March Madness

No, not the college hoopla over brackets, but the time of the year when the meds that seem to have worked all winter suddenly don't seem to be working so well now that spring is upon us.  Caroline's haven't entirely pooped out, thank goodness.  But we do need to up her Seroquel again.  I don't know if it is the extra sunlight or what, but agitation and explosivity start to show their ugly heads.  Doc appointment on Thursday will be helpful.  She was too whacked out today to do school effectively.  We will try again tomorrow.

Daylight Savings Time/Seasonal Changes

The change in the seasons always means a change in mood stability for people with bipolar disorder, and if you throw in the DST change, you have got some challenging days.  Caroline went back to bed this morning after she got up and ate breakfast because her sleep is all messed up.  Sigh.  I guess we will homeschool in the afternoon today.

Moving Along with the Move, Trusting God

My sister has been coming over to help me with organizing and pitching things out and laundry . Very grateful for her help.  I couldn't sleep last night.  My anxiety came roaring back like it likes to do sometimes.  I should have gotten out of bed and taken something else to help me sleep but I didn't.  Sometimes I just wonder if all of this is really going to happen: getting our house in order to sell, selling it, actually raising enough support to begin working for MCYM, packing up the house, moving, living off of much less than we had been used to before he lost his Navy job.  So many mountains.  I don't know what I would do without the promises of God, without His grace and forgiveness and forbearance towards me, towards us.  I don't think I have faced bigger obstacles than what is ahead of me in a very, very long time.  A real Red Sea to be parted and to walk through, and then a desert to cross before we hit the promised land so to speak.  God never promises us a life without trial and hardship.  He promises to be with us through them and to use those trials to purify our hearts, and to glorify Himself in our lives, and to give us adventures of which we never dreamed, completely impossible apart from Him.  We can raise a fist and blame Him for our trials,  or humbly say yes to the adventure that sometimes looks like suffering and receive blessing in the midst of pain.  He is our great blessing, our shield, our very great reward.  Genesis 15:1.

Sisterly Love

After reading my sad post yesterday, my sisters blessed my day with sweet words of encouragement and a meal brought over and some very needed help with cleaning and organizing.  I don't what I would do without my sisters!  I spent the morning talking to my therapist about all that we are facing and how to handle different things.  She is a very wise older woman who always has fresh perspective for me to take in.  I am letting Mathnasium handle all of Caroline's Algebra and I am going to go ahead and get Rosetta stone Spanish for her too courtesy of a helpful donor so that I can truly focus on getting our house ready and not on the parts of homeschooling that take up so much of my day.  Jane homeschools herself essentially being so motivated, and I am going to have to let Caroline do the same with the right tools.  I just can't be as hands on with her and do all that needs to be done with the move.  I have to trust that God is going to get us through all of this, and Caroline through all of her subjects.  I have held on pretty tightly to her schooling and it isn't that I am letting go completely, but she is old enough to take responsibility for making sure it all gets done.  The schedule and assignments are all laid out for her in the Sonlight curriculum guide, so with the math and Spanish also covered by "tutors" , I think I can relax a bit and do what I need to do.

Prayer Needed Today

I must admit that I am struggling, really struggling, under the weight of the many pressures our family is under right now, from our lack of a paycheck for over a year and a half, to our debts from our spate of unemployment five years ago, to needing to quickly get a house on the market that needs a lot of repairs and paint and having to do it all ourselves, to the tremendous burden and responsiblity of homeschooling a child who has bipolar disorder and major learning disabilities and who needs extra and costly tutoring just to graduate from high school, to strained family relationships over money, to a large tax bill to the IRS for using our 401 K this year that I have no idea how we will pay, to the prospect of living on far less than we did when my husband was employed with the Navy when he does finally start work sometime this summer.  I am overwhelmed and discouraged and feeling hopeless. I know God is in control, that He has a plan, that He will bring good out of all of these trials, but today, I am just weeping. Pray that God will bring me out of the depression I have found myself in.  Depression sucks all the energy and life right out of me and it is a familiar and ugly foe.  I become paralyzed, stuck, unable to do simple things like pick up laundry off of the floor, or wipe down a kitchen table, much less homeschool.  I can't even pick up the phone to call a friend when I feel like this.  I am standing on the Solid Rock, but feeling the hurricane winds blowing against me and bending me over til I feel I might break.

Sweet Sixteen is Sad for Caroline

Our precious Caroline turns 16 in a few days, but has no friends whom to invite to a party.  She has been very sad these last few days about how her sisters all have friends and things to do and places to go with them, but she sits at home, with no one to go to the mall with her , or to a movie, or anything.  Her pain is our pain.  Taking her out of the school after the first quarter was necessary as she was failing English, her best subject, because she couldn't remember grammar to save her life and the grammar was heavily weighted led to friendlessness all over again.  She was so discouraged to be failing when she should have been a straight A student that her emotions were affecting everything else.  Her concussions compromised her memory too much for her to succeed in this school.  We don't doubt our decision to subsequently homeschool her, but the ramifications are that she is friendless again.  When you are a 16 year old girl, with nothing to do outside of schooling at home because you can't play your favorite sport after an injury has sidelined you for the season, life is quite unbearable.  I wish we could do something to ease the pain of her loneliness.  Moving will help, as she can make a fresh start and make new friends, and hopefully will be able to stay in school for a whole year at a time.  I really can't wait to get to CO.  We need change.   Caroline needs new opportunities for school, church, and friends.

Text Anxiety Led to Skewed Results

Ugh.  I am kind of frustrated right now.  Caroline suffers from math test anxiety and has for years.  I remember when she was in the sixth grade and she was taking a homeschool math co-op class and the teacher said it was too easy for her and she needed to be in pre-Algebra.  So the pre-Algebra teacher attempted to give her the placement test and SHE COULD NOT TAKE THE TEST. She knew the material and completely froze up and blanked and couldn't prove she was ready for pre-Algebra!! So she went back to the class that she was bored in.  All because she couldn't take a test without freaking out.

Well, the Mathnasium assessment she did that we were able to take home with us showed many,  many problems that she had just skipped, easy ones.  Today when we were homeschooling I went back to my Saxon speed drill books and did some of the drills that were similar to the problems she said she couldn't do at Mathnasium, and SHE DID THEM JUST FINE!!! So I asked her what the problem was (the math tester was really shocked about how "little" she could do) and she said she blanked and froze up and just didn't want to try because she freaked out.  Great, so she may actually be much farther along than she tested.  So frustrating!!!!!  I thought she was past the major fear factor, but I guess she isn't.   I will of course explain this phenomenon to the math tutor on Wednesday and show her the work she did with me.

I am happy that she actually does remember lots of her pre-Algebra skills, but unhappy that she couldn't show it when it counted.  :(  Oh well, we just have to keep moving ahead.

We went through a major financial crisis today.  Not fun.  Being unemployed sucks, pardon my French.  The new job doesn't start until early in the summer and so we don't get paid until sometime in June, so we are still hanging on by a thread.  I thought I was going throw up today I was so stressed out.

Mathnasium Testing and Verdict

Caroline had a math assessment done at Mathnasium yesterday, and let's just say that she shouldn't be taking Algebra I right now.  Sigh.  Her math learning disability evidenced itself in every problem.  She can't remember any of her pre-Algebra skills!!! And she has had two years of pre-Algebra!!!  She could do the basic algebra equations because that is what she is working on right now.  But she can't remember how to turn decimals into percentages and her word problem skills were dismal!  So this means that we have to go back to a seventh grade math level again in tutoring.  Knowing how poor her long term memory was when Learning RX tested her in October, we aren't surprised, just saddened.  Algebra may not be something she will finish this year before school starts in the fall.  In which case she may be doing some summer school in high school so she can get the four years of math that she needs to go to college.  And it is quite obvious now that she can never take a break from math in the summer.  She will need the constant reinforcement to not lose any ground she has made.  The hard part is that her 14 year old 8th grade younger sister is flying through Algebra this year, and Caroline is in the 9th grade and is turning 16 next week and can't get beyond pre-Algebra.  :(

When Illness Messes Up Medication Regimens

When your bp child gets sick, and can't hold down their medications, what do you do?  Last night Caroline got a stomach virus and couldn't keep down any of her night time meds, many of which are the mood stabilizers and the sleep inducing drugs (insomnia has been a life long issue.)  So she was up the WHOLE night because she couldn't fall asleep, and in the morning she was high as a kite, manic as I have seen her in ages, laughing uncontrollably, really sassy, feeling way too "good."  That's the problem with mania--it feels really good:  a ton of energy, silliness, an "expanded" mood as they say.  But it is dangerous.  I gave her the morning meds with a little extra added in to counterbalance the lack of meds last night.  Then she acted like she was going to throw them up, but I had put Zofran in the mix.  She turned out to be OK.  Now she is asleep and will likely sleep for hours.  If her stomach virus had continued to be an issue in the morning and throughout the day, resulting in 24 hours without meds, I would have had to take her to the ER for phenergan so we could get it under control enough to restabilize her.  So complicated!  But I know it isn't much different when a diabetic child gets sick and can't eat.  Then they have blood sugar issues with which to deal.  That is no fun at all and can damage their organs if it gets out of control.  I am not enjoying my Saturday thus far.  Going for a workout.  Endorphins are needed.

Nurture or Nature, Genetics or Environmental Impact?

I often wonder about the origin of early-onset bipolar disorder, Aspergers, autism, ADHD, learning disabilities, Pervasive Developmental Disorder, and so on.  In my extended family of four sisters, we have two nephews from two different sisters with Aspergers, another  with Autism and a host of significant physical problems, my own child with early onset bipolar disorder and ADHD and learning disabilities,  and a sensory processing disorder.   My dad was exposed to nuclear radiation in the 1950s as a young Marine when he was assigned to watch nuclear explosions with many other service men in the desert in Nevada before any of his children were conceived.  He died of CML leukemia at the age of 56.  My younger sister and I were likely exposed to toxic chemicals in the water at Camp Lejeune when in high school, a problem stemming from practices that had been going on for decades before contaminated wells were shut down in the mid to late 1980s.  So I wonder:  were our genes somehow negatively affected by these exposures, or is this all a coincidence having this many brain "issues" within one family?  We shall never know, I guess. And does it make all that much of a difference except that it might cause one to choose organic over pesticide-laden foods, or all-natural cleaners over chemicals, or purified water in stainless steel bottles over BPA contaminated drinking water in plastic?  But the thought is interesting to consider.  With the huge rise in autism in our country, I think there are environmentally related reasons combined with genetic predispositions that might be the cause of the explosion in diagnoses.  Or maybe it is just caused by environmental factors like chemical or radiological exposure.  Just a guess.  What do you think?

Military Community Youth Ministries, Here We Come!

My husband's new job is with Military Community Youth Ministries, an ecumenical ministry to military brats in the US and around the world.  He will be at the home office in Colorado Springs in a leadership role, overseeing others who are serving Christ and kids in the military community in this way.  If you are interested to know more about MCYM and how your child might get involved with this non-profit that provides mentorship and leadership training, please go to:  www.mcym.org.  We hope to move to Colorado by early June to start this new adventure.  If you have some good recommendations on counselors and psychiatrists in Colorado Springs for Caroline, please let me know!  Also, MCYM is tightly related to Young Life, for which we used to work for 12 years.

Arrgghhh!!

Just venting:  I can't wait unti my youngest child is completely autonomous with her homework.   That's all.

Mathnasium: Fun Math Tutoring for Kids Who Hate Math

I have found a wonderful math tutoring business called Mathnasium.  We have one in our area, of which I was unaware until yesterday, but their sites are found around the country.  Unlike Sylvan, they specialize in math tutoring only and use the same curriculum that your child is using (they will order a book for the tutor at Mathnasium to keep on hand) and use methods that turn your child from a math hater into a math lover.  We may enlist them if we can afford it, because Caroline is just not getting Algebraic concepts.  Learning RX is helping, but we can't let her fall behind in Algebra I if she hopes to move on to Geometry in the fall.  www.mathnasium.com.

Migraines

Caroline has had two migraines in this last week bad enough to land her in the ER.  Poor kid.  If it isn't one thing, it is another.  We don't think it is medication related, but rather that she has inherited my tendency to get migraines when a low pressure system moves in (cold and rainy) combined with another factor:  forgetting to eat, watching too much TV/Computer time, major stress, not enough sleep, etc.

So they shoot her up with Toredol, Benadryl and Fenergan with IV fluids.  Works everytime.

He has a JOB and we begin a new life!

My husband has been offered a job in Colorado Springs working for a youth ministry there.  We are SO excited, and Caroline is just thrilled to be able to start over again in a new town, with such natural beauty all around.  We hope to move by the end of the school year, but we need to sell our house,and a few other things need to fall into place.  The salary is about $50,000 less than what he made a few years back, when he had a job, but after all we have been through, I don't care.  And the cost of living is a bit better out there, and we already have a house someone has offered to rent to us for a very reasonable amount.  The kids will go to public school, except for Caroline if we think she still needs to be homeschooled.  I may need to get a part time job to make it all work, but that's ok.  We are just so glad we know now where we are going and what we are doing.  If you do pray, please pray that our house will sell for a decent amount in this struggling economy as we do need the proceeds very badly.

Thank you God, for your faithfulness to us through this whole long journey.  We see His hand in all of this, in the timing and in the waiting.