About our Daughter

I am mother to four wonderful daughters, ages 17, 19, 21, and 23, and wife to the greatest husband on earth. God has given us a special child to raise one who was diagnosed with early-onset bipolar disorder at the age of seven, though she showed signs of it from the age of fifteen months. She also has ADHD, Sensory Integration Disorder (sensory seeking), Dyslexia, and Non-Verbal Learning Disorder-NOS, all typical comorbidities for a bipolar child. In spite of the trials, she enjoys lacrosse, running (finished her first marathon in October of 2014!), and reading and writing her own books. I will share with you the many joys and sorrows we have faced and will face in the future with the hope that you may find better understanding about this mental illness caused by both chemical and structural abnormalities in the brain. I desire that you will be encouraged by this blog if you are also dealing with a bipolar child. Thank you for reading and sharing in our journey.

How Did You Know She Was Bipolar So Young?

I wrote a long explanation of how we came to this bipolar diagnosis in a child so young under my post of March 19th of 2009. If your child or a child you know bears similarities, please seek out a good psychiatrist and don't wait for "things to get better." Often they will simply get worse, and the longer a child is unmedicated, the more damage their brain can accrue. Early diagnoses and treatment are key to providing these children with a chance at a successful life later as a teen and an adult.
Never change, start or stop a medication without the approval of your child's physician!

Monday, January 31, 2011

Just Do the Math

Now please.  Just sit down, open the book, and FINISH a lesson.  Make your Mommy really happy today. Please.  Thank you.  Aarggh!!  I hate Mondays!!!

Sunday, January 30, 2011

Trying Focalin/Intuniv Combo

Vyvanse was not well tolerated by our ADHD youngest daughter Mae so we are now trying Focalin, which seems to be okay right now.  We will let you know how it goes after a few weeks.  She is one stubborn kid when it comes to taking her meds, or maybe we are just overwhelmed by monitoring the many medications that Caroline has to take every day.  We just need to be more on top of Mae's need for medication to help her focus seeing as all other approaches have not worked.   Mae's grades at the end of the second quarter weren't what they could have been if she could have been focused in class.

Thursday, January 27, 2011

The Season of Educational Decisions

This time every year is the time when we embark on the "what school situation will be be trying out for Caroline next fall" adventure.  But choosing a school involves decisions about her two younger sisters as well.  We may homeschool Caroline and Jane again, but I don't think I want to homeschool Mae at all.  Been there, tried it, and it was nigh to impossible.  She is highly strong-willed and very ADHD so that every second spent homeschooling was a huge battle to get her to do her work.  I nearly killed her by the end of one month before I cried uncle and put her back in private school.  So that is out.  I really want all three girls to be going to the same school, having the same schedule which would make our lives a whole lot simpler.  The oldest Elizabeth will be in college so she will be out of the picture.  I just don't know what school would meet all of the needs of all three of my kids, between Caroline's bipolar disorder and learning disabilities (dyslexia and non-verbal learning disorder) and Emma's need for a small classroom too, and of course affordability is always an issue, even more with my husband out of work.  Maybe I just need to go to work full-time and put them all in private school (the public schools in our district are out for so many reasons after trying them.)  Ugh, I hate all of the self-doubt and uncertainty!! I wish we could move to a better school district!!  I wish that Mae and Caroline were "normal" and could handle any school environment like Elizabeth and Jane!  Why does life have to be so stinking complicated all of the time??!!

Just venting.  I know many of you share these struggles, when the free public school seems to lack what your kid needs, even with the promise of an IEP and support, frequently not delivered, and the private schools are too expensive or don't want your bipolar kid, even if they are stable.  Aaaargghh!  Life just seems unfair sometimes.  I am envious of my friends for whom education is just such an easy decision, and often free!  

We have switched math programs mid-year for Caroline, from Teaching Textbooks, which Jane loves and so do I, to Saxon, not on the computer, because Caroline is too easily distracted by listening to music on the computer while attempting math problems.  Doesn't work for her at all.  She is behind in Algebra so we are playing catch-up right now.  I know she will catch-up because we can double up the lessons but it is too bad that she wasted so much time in the fall instead of doing her lessons!!  

How I long for spring right now!  The grey days, the rain, the cold just makes us all want to hibernate.  I need the sun!!!  And a good run too!

Saturday, January 22, 2011

A Great Example of Using an Educational Advocate

My youngest sister Jen has four kids, two of whom, the boys, are both on the autistic spectrum.  The oldest boy, "Bobby," age 12 and in the sixth grade, is diagnosed with Aspergers Syndrome, and the second oldest has autism and a host of other physical issues.  Just recently, my sister went through a very difficult time with Bobby's public middle school and I asked her to share her experience so that others might benefit from her struggle to get her son what he needs in school.  So, with her permission, I am offering her story:

"About ten days ago, my son left for school via the special education bus, as usual.  He was late, flustered and overstimulated by the noisy ride (he later told us three kids on the bus were screaming and crying.)  After arriving at school, he was standing in the hall by himself, except for a teacher, who did not know my son, or his diagnosis.  She observed him talking to himself, which he often does when agitated, and she asked him what he said.  He replied, " I am making a list of people to kill if it wasn't against the law."

Understandably, this teacher was concerned and reported him to the office.  He was called to the office and he sat for over three hours, speaking to the assistant Principal who asked him what he meant by his statement and he told her he was just really mad and hated some people right then due to the noise and his being tardy to class because of the disruptive bus ride.  Then, I was called, again three hours later, and informed that he had made a verbal threat and would be recommended for expulsion.

I was completely blown away.  I rushed to the school, came into the office, saw my son sitting there looking very forlorn, and told him it was going to be okay,  and that I wasn't mad and gave him a hug.  We went back to see the assistant principal and she told me the procedure for expulsion was that it had to go through a committee meeting first called a "manifestation determination meeting" (MDM) which would decide if his statement was related to his disability or a failure on their part to follow his IEP.  I was told to show up on Monday (this was Thursday) and then we were escorted out after we were told he was immediately suspended from school property until the meeting.  I felt like I was being dismissed very abruptly by the assistant principal when I had many more questions.

I got into my car and began to cry in spite of trying hard not to.  My son asked me what was wrong and I asked him, "Do you know what you said, Bobby?"  He stated what he said and what he meant by it, and I told him that because of his statement, he was likely being thrown out of school.  He got very sad and proceeded to lament that his life must be over now, no college would be in his future,  and thus no job all because of what he said.  Of course I reassured him this was not true, this was just a bump in the road and we would just keep going.  He is a middle schooler, I remind you!

As the day progressed, I got angrier and angrier.  Some things didn't add up here.  He has an IEP, how can they just throw him out?  What about talking to him and determining there was no real threat?  How about detention?  Why did it take three hours for them to call me?

I decided to look up the school division disciplinary policies  and they do state that for certain types of behavior, children  can be expelled even if they have an IEP.  But I also noticed that if a child deals drugs on campus, they are not expelled, but receive a 45 day suspension.

My husband and I decided to find a professional educational advocate who would walk us through all of red tape because it all seemed overwhelming.  The  next morning I called a woman who lives in the area and has her own business representing parents of special needs kids in the Virginia Beach area, called Advocating 4 Kids.  She was very nice, and when I related the details, she was immediately sympathetic, stated she had several clients at this school, and greatly dislike the administration there because of its inane ways of dealing with these kinds of situations.  When I told her they scheduled the "Manifestation Determination Meeting for Monday, she told me to immediately put in writing that we would reject that date and request three other possible later dates, which we promptly did. 

Fortunately, we had already had a psychiatry appointment on the books for our son before all of this transpired.  I notified that staff of what had happened and that I would be requesting special help from the doctor in the form of a letter after we met with her.  The psychiatrist met with us and she also heartily agreed that there was no intent behind his words, only thoughtless verbalization, which is so common to Aspergers.  She agreed to write a letter on our behalf to the school.

I called the advocate on Monday and hired her to come to the MDM meeting on Friday.  I gathered and copied all of the documentation I could about my son and the school division regarding his IEP, etc.  and I called his primary care doctor who also has son with autism and is well regarded in the community as a champion of special needs kids.  He promised to draft a letter as well.

I then also hand-walked a letter into the school about the fact that our meeting would be recorded as is permissible by law.

On the day of the meeting, we met the advocate a few minutes before, and the assistant principal made a bit of a deal I didn't give proper notice about bringing a professional advocate, and I was nervous about her attitude when she disappeared into the meeting room before we were allowed back, I suppose,  to check on the policy regarding advocates.  My advocate remarked that they know darn well that parents can bring anyone they wish to a meeting.  

We were escorted back, and we found that the group consisted of the assistant principal, a teacher familiar with Bobby's diagnosis, a special needs case manager, and a special education coordinator for the school division, but noticeably absent was a school psychologist and the teacher who initially questioned my son.  My advocate handed out the release of information documentation to all present.  She then handed everyone copies of the doctors' letters and we also handed out the DSM manual definition of Aspergers Syndrome.  The special education coordination was in charge of the proceedings and stated that the committee would need to come to a consensus not a vote.

The assistant principal was asked to describe the incident as told to her by the witnessing teacher.  The assistant principal said that my son had made a written statement as well as a verbal statement.  This "written" statement, interestingly, never made it home in the packet of papers they sent me.  And, as it turns out, this was not a statement written by my son, but taken in third person by someone else and he was made to sign it!!  It used language that my son would not have used in reference to himself.  This made me so angry that they would make my son sign something before I was ever called!! The advocate jumped in and said that this was not proper procedure since it was paraphrased and in third person.  The school kept trying to say it was his own words.  The advocate retorted that by not having the actual witnessing teacher present they were denying the parents' due process, which they refuted.  

The advocate was adamant that the recommendation of expulsion was not the reason for the meeting, but to find out what had actually occurred and if the conduct was related to his disability.  The special ed coordinator kept interrupting, but our advocate made sure that our voices were heard throughout the meeting.  We discussed his IEP and his qualifications for one due to Autism and ADHD, and the fact that his IEP states that if he is agitated, he should be able to have a time out in a quiet space until he is calm. His extensive psych-ed testing that we went over states very clearly that he has a very difficult time letting go of ideas regardless of possible consequences, as most children with Aspergers Syndrome do.  

We also discussed the letter from the psychiatrist extensively, which helped our case as it was quite detailed, and stated that expulsion would not serve his best interests, but rather that he needs protection from bullying and a supportive environment with guidance from a full time aid.

The question for the MDM to decide was whether this incident was due to his disability, to which they agreed yes.  The question as to whether or not it was due to the failure of the school to follow his IEP was denied.  The advocate again brought up her reasons for disagreeing with their assertions that his IEP was followed, including that  goals and strategies given in his IEP were poorly written and overly vague.  

My husband brought up the fact that our son has been bullied at this school, is all of 12, but emotionally much younger, and asked them to do a much better job monitoring the situation and intervening on his behalf.  It seems to us as though they have not truly recognized his disability as being in the category of "special needs"  evidenced by the fact they asked him to sign a statement without a parent present that violated our son's rights.  

In the end, they chose not to expel him because the committee decided that his behavior was related to Aspergers Syndrome and that his IEP needed to be revamped based on a Functional Behavioral Assessment (FBA) which has never been done.

I am so very glad we hired this advocate.  We never would have been able to bring up all of the things she did so expertly.  She was not intimidated at all by the assistant principal or the committee and was able to bring in all the relevant data.  And she was very effective at pointing out the shortcomings of both the IEP and how the situation was handled by the assistant principal.  Our advocate was worth every penny and we would not hesitate to use her services again in the future.  

At this point we are waiting to see if our son's school record will be corrected so that it does not state that he has had seven days of suspension or a recommendation for expulsion.  I also wrote on the document they wanted us to sign at the end of the meeting that my son needed protection from disciplinary actions until the FBA is completed.  

Truthfully, we have decided that will likely home school our son for the rest of the year in spite of all of this because of how traumatized he has been by the bullying from other kids and our lack of confidence that his holistic needs can be met in the public school.  But I am so glad that we stood up for our son and his rights when the "easier" thing would have been to just acquiesce to the incompetent decisions of this school division and allow them to expel him for what was a manifestation of his disability. "

I am so proud of my sis and the way that she took action when the deck was stacked against them.  We have a huge job to educate the educators about the symptoms of Aspergers Syndrome, and its cousin, Early-Onset Bipolar Disorder.  These kids deserve to be understood and cared for in the same way as any child with a physical disability.  They have "invisible" disabilities that are often overlooked when their behavioral symptoms gain them the wrong kind of attention.

Let me know of your experience with an educational advocate!  


Monday, January 17, 2011

How Can You Help? Ask if Your Friend Needs A Free Sitter for a Night!

Are you a friend to someone with a Bipolar (or Aspergers, Autistic) child?  Did you know that one of the nicest things you could do for your dear exhausted friend is to offer to babysit one night so she could go out and have a fun night to herself or a date night?  Mature sitters who can handle the extra challenge and can love their special kid are hard to come by.  You would be such a blessing to your friend in this way, even if it was just once a year!  We have been there in the past with never getting time away to recharge because we didn't have someone we felt we were not burdening by asking them to watch our kids.  Parents of special needs kids have a very hard time asking for help in the ways that mean the most.  Just a thought!

Wednesday, January 12, 2011

Changed the Look

I like this blog template of a bus traveling along a desert highway, seemingly to nowhere, forever just going and going, who knows where.  I would say that sometimes life with a bipolar child (or an autistic child, or one with Aspergers, Juvenile Diabetes, etc. ) can feel like that, that we are on a junky bus on an endless journey, through a barren desert, not knowing where we will land at the end of the road.  Then slowly you begin to realize that the journey is more important than the destination.  Living life now, in the moment, in the messiness, and not allowing yourself to give in to despair and depression is what makes the journey tolerable, more than that, meaningful.   The end is in a place we can't see right now.  How we get there does matter.

Right now Caroline is freaking out about finishing assignments before the end of the quarter.  So is my husband.  In fact, he is more freaked out than she is.  Please, relax.  Let's remember why we are homeschooling, not so we can have more stress, but a little less.  She has enough stressors in her life right now physically, socially, and emotionally.  One foot in front of the other and before you know it the end of May will be here and she will have LEARNED.   Not crammed, memorized, and spat out,  but LEARNED.  I want her to love learning, not hate academics because she feels like she is in a pressure cooker.  The hubby needs to go back to work and do guy-stuff.  I am grateful for his help in homeschooling, but God could you give my husband a job???

Tuesday, January 11, 2011

Mornings Are Like Quicksand

Getting Caroline to wake up in the morning has been like trying to pull someone out of quicksand.   She seems inexorably stuck in sleepiness.  She says she isn't sleeping well at night at all.   So back to the drawing board with sleep meds.  I think the Rozerem might have pooped out, so to speak.  This morning fogginess is leading to missed classes at the homeschooling co-op, which is so frustrating.  She then gets behind in her schoolwork and we spend all week trying to get her caught up, so we don't get to other things she needs to do as well.  The thing about quicksand is that the more you try to pull a victim out of it, the deeper they sink in.  That seems to be true of Caroline too.  Now I am sleepy and I am going to take a nap before I deal with the rest of the afternoon and evening!

Monday, January 10, 2011

Lithium: One of Our "Miracle Drugs"

Throughout the last seven, almost eight years that our dd has been diagnosed with early onset bipolar disorder, we have had many medication trials.  Some readers have asked about Lithium, and how our child has done on it.  I would say that it is one of five "miracle drugs" that have allowed our daughter to live a mostly normal life.

Lithium was the first drug that brought real stability without excessive tiredness.  Our daughter was about 10 when we tried it after Depakote made her gain 15 lbs in three months and interferred with her cognitive ability to the point that we held her back a year in school.  Lithium gave her new stability and allowed her to think in school.

Abilify was the next "miracle" for Caroline, but Seroquel has done the same thing: taken care of hallucinations, both auditory and visual.

Trileptal, in the higher  doses, eliminated the daily rages that she experienced for so long.  Now they are rare.

Lamictal has acted like her antidepressant, especially in the fall, as she cannot take any antidepressants without inducing mania.

Amantadine has given her self-control that has been the icing on the cake.  She became much more able to tolerate frustrating situations after starting this med.

The worst side effects of any of these drugs was from the Seroquel that caused weight gain again, but the Amantadine seems to have counteracted this effect, as she is back down to her normal slender self.

Lithium is the only mood stabilizer that is proven to prevent suicides.

Sunday, January 9, 2011

Thyroid Issues, Lithium Related?

Apparently Caroline has hypothyroidism which is a known side effect of long-term lithium use.  We are taking her to a pediatric endocrinologist in a week.  Hopefully we can get this straightened out.  She has been very sleepy lately, hard to rouse in the morning, more than usual.  If it is not one thing, it's another!  We probably won't discontinue the lithium, but she may need to start taking medication for the thyroid.

Friday, January 7, 2011

Aspergers Too?

I am beginning to wonder if our daughter has mild Aspergers as well as bipolar disorder.  Between her horrible social skills, her obsessions, and non-stop stream of consciousness chatter about random facts that she knows, she might just fit the criteria.  I think we will bring this up at her next psychologist appointment.

Wednesday, January 5, 2011

Yesterday was Then, Today is Now

Our family had a really bad day yesterday, beginning with my own mood.  The morning went sour with Caroline calling us from her homeschool supplementary classes saying she felt sick.  This was her first day back and this was not a good start for her.  I was mad.  Was she sick?  Maybe.  Was she stressed out because she didn't finish the history homework that she told us she had finished?  Probably.  It all went downhill from there.  Really downhill.  The stress of no job, no income, having to tap our retirement fund, January bills looming,  Caroline's poor study habits,  her poor choice of friends, Mae's school struggles, the 10 loads of laundry piled up in the living room, the Christmas boxes everywhere, all of it just really got to me.  I was a mess all day until I fell into bed last night exhausted.

But today is a new day.  A new start, a fresh perspective.  Forget yesterday, just press on today.  This is what I am telling myself.  I have a headache already and it is 8:00 a.m.  Hopefully this day will be smoother.

Monday, January 3, 2011

We Won the $250,000 Grant!!!!!

I say "we" because the Child and Adolescent Bipolar Foundation represents our family and every other family out there dealing with early onset bipolar disorder.  Thank you to everyone who took the time to vote!  You did it!!  CABF will be using the money to help make our children's lives a little easier.

Sunday, January 2, 2011

All The Things I Didn't Do This Christmas

This was a very different Christmas for me and my family this year.  Between Bill's joblessness and me getting sick the week before Christmas, I didn't do half of what I normally do.  The list is as follows:

No gingerbread house.
No baking dozens and dozens of cookies for neighbors.
I didn't get most of the ornaments on the tree.  Very sparse looking this year.  Oh well.
The rest of the inside of our house was skipped this year in terms of holiday decor, except for a few candles.
We didn't go to see the holiday lights at the Botanical Gardens or anywhere else.
We didn't entertain this year, as we normally like to do.
We forgot to do the Advent wreath.
We didn't do the Adornaments tradition (you might not know what this is, but we have tried to do these)
We didn't have a sit down Christmas Eve or Christmas Day dinner using my silver and china.
We didn't make it to the annual Christmas Cousin's Party because we were snowed in.
I forget to stuff the stockings for our pets.

But in spite of all of these undone things, we enjoyed Christmas.  Maybe even a little more than usual.   What we did get to do this year together was build a huge, real igloo in the backyard, which the kids will remember more than another gingerbread house because we never get snow like that.  But I would like to revisit some of our traditions next year.  But some of the craziness we can leave behind.   Bring on the snow anytime!

Saturday, January 1, 2011

New Year, Starting Fresh

First, I have to say that this was a great year for us in many ways, and a very hard year in many others.  The good news:  another year without a hospitalization, and another year without Caroline being asked to leave a school, she played lacrosse all summer, and our oldest got into the college of her choice, for which the GI Bill will pay the majority of the cost.  These are great things to celebrate, truly.

On the downside, my husband hasn't worked since July, we are in a very financially precarious position,  Caroline didn't have a stellar fall semester in terms of grades, still doesn't have any girlfriends, and our health insurance ends March 26th.

If we weighed all things in the balance, I would say we are still very blessed and hanging in there, with the arms of God holding us.  He always has the last say.  Circumstances may confound us, but God is big, and God is good, and He keeps His promises to sustain His children.  As the psalmist says, "I have never seen the righteous forsaken or their children begging bread." Psalm 37:25   We are so grateful for His never ending love and kindness to us.

I know many of you out there are struggling with an unstable child, unemployment, poor health insurance, or none at all, grandparents who blame you, and a school system that isn't giving your child what they need.  I pray that you will find this year to be a better one, one of finally finding the meds that work, the school that cares, a family who grasps that you are not bad parents, but great parents with huge challenges, and job situations that pay the bills and provide good health insurance.  Thank you for all of your comments, for supporting CABF in the Pepsi grant contest, which we think we have won, and for just letting me know you are out there.  I love you all and treasure our camaraderie.

Don't stop advocating for your child, don't stop seeking the best docs, the right medications.  You are not alone, and perseverance does pay off in the end! Take time for yourself in the battle, and try to get time away from your kid(s).  They need you to be refreshed too, and make time for your spouse because you need each other!  A strong marriage will make a huge difference in your parenting.  If you can, seek counseling for your marriage so that you have a rock solid foundation, go on a retreat together, and ask for the financial help to do these things if you need to!!!

God bless you and give you a peaceful New Year!  Megan