If you keep up with mental health news, you know there is great trepidation among mental health professionals and the general public regarding the pending release of the fifth edition of the Diagnostic and Statistic Manual of Mental Disorders, DSM-5.

Questions swirl such as:

After this diagnostic manual is released, will anyone be considered normal?  Will every human emotion be pathologized?  Will every human struggle become cause for prescription psychiatric medication?  Who is behind the determinations of what is normal and what is not?  What are their motives?  Will this book be a joke?  Does pathologizing nearly everything make the whole psychiatric process a mute exercise?  Will this DSM-5 diagnostic manual take it all too far and make a mockery of psychiatry?  What are the conflicts of interest regarding the people who make these decisions?  Who has what to gain from the changes in this book?  Who has a lot to lose from the changes in this manual?

It is my opinion that as a society in whole, we all have a lot to lose from some of the pending changes to this book.  Some of the proposed changes just seem absolutely ridiculous to me.

But…read about it yourself and make your own decisions.

Comment.

Participate.

Get involved.

From May 2 – June 15, 2012 you can go here www.dsm5.org and read about the proposed changes and comment.

Do it.

Let the authors of this DSM-5 manual know what you think.

This book is meant to help society and help the human condition, not harm it.

Help these people stay on task.

They seem to be struggling.

[photo credit]

Normally I like to stay with the black and white theme but hey, it doesn’t do Spring much justice so…color it is!  Living on the wild side over here, I tell ya.

I haven’t been much for posting lately.  I guess sometimes you just need a break from it.   Anyway, after a rough few months of adjustment on Rye’s end to our move here, things are now going well.  Or, I should say ‘teen years well’.  This is my new measuring system.  I’ll tell you, the teen years are a bit more of a challenge than I had anticipated them being so I’ve had to adjust my paradigm.  That said, in ‘teen years paradigm’ and despite an occasional bump in the road, things are going well.

Rye is going to school full time most days…check.  He is trying for the most part at school and his grades are within normal range after some IEP adjustments…check.   He is now making friends that are the kind of friends we would expect him to have and would welcome into our home….check.  He is getting in good physical shape and looking forward to playing football next year…check.  He is decent at home most of the time and falls into the general teen sassiness sometimes but is overall acceptable…check.  Despite the potenital embarrasment of being seen  ‘going out’ with his parents he still occasionally likes to do things with Don and I and we still have fun with him…check.  So, overall, I can’t complain.

As for me, I am now working on focusing on myself a little more and Rye a little less.   This kid takes so much parenting and has for so many years that I had really started to let myself get sucked into the vortex of all that is Rye and it was time to start readjusting my priorities.  The teen years for kids with mood disorders are tough and I am learning through necessity to detach a bit emotionally, be firm with him, hold my ground, not waiver, demand more of him than he wants to demand of himself, and simultaneously move on with taking care of me by placing myself higher on the list than I have been for the past few years.

With that, I have started working out at a gym regularly.  The first few weeks of doing classes at the gym I thought I might die from my body adjusting and the incredible amount of soreness I was feeling.  But now it is getting easier.  And it feels really good to be physically tired at night.  And my stress level is much lower.  Sweating and hard physical exercise does great things for one’s stress level.

And Don and I have been trying to plan fun things to do on the weekends and have a little more fun in general.  And that’s been nice!  We plan things to do and then if Rye wants to come, he comes,  If not, he either stays home or does something with a friend.   It’s nice now that he’s old enough to leave home alone so we aren’t chained to his needs.  And most times he even enjoys that time home by himself.  I thought that day might never come – but here it is.

Go figure.

The kid is growing up.

So, here goes:

When was Rye diagnosed?

Rye was diagnosed with adhd at 5 years old.  He was diagnosed as having bipolar disorder at 6 years old when he was hospitalized for a manic/psychotic reaction to Adderall & Risperdal.  He was actively hallucinating, actively threatening suicide, thought dogs were biting him, thought God was talking to him and asking him to meet him in trees, etc, etc.  He also had a grand mal seizure. While in the hospital the onsite doctors changed his diagnosis from adhd to bipolar disorder and changed his medications to Depakote & Lithium.  He stabilized and the hallucinations and erratic behavior went away.  We, as parents, kept him on Depakote & Lithium for about 4 months or so until we weaned him off of them deciding that there was no way he could be bipolar that young and that it was more likely just an adverse reation to the Adderall and Risperdal.  As it turns out, as parents we were right and wrong.  Right in that he did stay medication free until he was 11 years old and was often high energy and inattentive in school but did fine overall.  Wrong in that at 12 years old he would again be diagnosed as having bipolar disorder and got to where he could not function well without mood stabilizers. And that is where we are today.

Has he always shown signs of bipolar ( from birth)?

That’s hard to say.  Rye was a great kid overall.  He is generally very happy, outgoing and pretty tough and independent and always has been.  However, signs I can maybe see looking back?  As a baby he was very colicy and needed to be held a lot. He started in full time daycare at 6 months old and did fine.  He was happy and personable and social but needed a radio turned on real low in his crib with him to fall asleep.  The daycare staff, who were very attached to him,  found it helped him feel not alone and was soothing to him.  By preschool he was the life of the party but was also showing signs of being a bit different in that he would rock to self soothe when he got overwhelmed and had difficulty learning anything that was not hands on (he would later be diagnosed as dyslexic).  He also had a very short attention span that was noticeable to all.

By about age 5 he had been kicked out of 2 or 3 daycares.  One for talking too much about cigarettes (I guess they thought he was going to bring one to daycare and light up at 4 years old – I have no idea), one for not being able to sit well in a circle and learn at the pace of other children (a very rigid Chuch of Christ daycare – I’m not sure what I was thinking trying that one except that my grandparents had founded it so you’d think they would have cut us some slack but no, they took circle learning and line formation very seriously), and one for talking about his baby brother that had burned to death in a house fire (he didn’t have a baby brother – I think this just freaked them out and they didn’t want to know what stories were coming down the pike).  I eventually took him out of daycares and just hired someone to watch him one-on-one after school which worked great.  Rye got a lot of attention, he got to be home, and the schedule was flexible, nurturing and not over stimulating.

Has he gotten worse over time?

Yes, I guess you could say he has.  By the age of 12 we were all certain he really did have bipolar disorder as he would have times of great mania that could not be contained.  And although he has never tended on the depressive side he has times where he gets very sad and depressed and it moves to threats of suicide quickly.  He would also have rages that went above and beyond a general frustration and would result in couches being thrown across rooms, delusions, and thought dysfunction.

When did Rye move from public schools to home schooling?

Over the years Rye has moved in and out of public school, private school, and home schooling.  His school placement each year has to do with the quality of the public school we are zoned for, how Rye is doing at the time, what his needs are at the time, and where his needs can be best met.  Presently he is in public school and is doing well.  That said, we are in a very good school district right now that is working hard to meet his needs and he has an extensive IEP with a lot of accomodations and flexibility and monitoring.  So it works.

In times that we have home schooled we have not been able to get what we needed from the public schools (because let’s face it, public schools range from great to really horrid and we’ve seen both sides on that).  We found that in bad public schools it is much better for the child to just pull them and home school than it is to torment them with a bad environment.  There are few things worse than a bad public school for a bipolar child.  You will never get and keep a bp child stable in a bad environment.  It’s hard enough in a good environment.

Have you lost a considerable amount of relationships in your life and Rye’s because of his illness?

No, I can’t think of a relationship I’ve lost because of Rye’s illness.  He had lost some friends for periods of time due to erratic and risky behavior that scared his friends (and it’s hard to scare pre-teen/teen boys so that gives you a sense of the power of mania) but the friends came back once he was stabilized.  They knew he was out of control and needed medication and Rye is really fun and a great friend when he is functioning in the normal range.

Now, I have had friends judge me about how I raise Rye.   But here’s the thing, until you’ve walked a mile in my shoes and have a kid like this, you have no idea.  So I just take it all with a grain of salt.   People often assume that normal tactics will work on abnormal kids and that is just flawed thinking.

What are your thoughts on the diagnosis ‘Conduct Disorder’?

Conduct Disorder is a bullshit diagnosis.  It’s a diagnosis given by doctors who want to say your kid is acting a fool and/or is angry and/or is sad and/or has a hard time transitioning between emotions and/or has a hard time processing stimuli and/or has a hard time reading social cues and and/or has some brain damage that we don’t know of yet and aren’t going to try and find – oh, and I have no idea why your child acts the way they do and I don’t want to work too hard to figure it out.  And there is no treatment plan.  So that diagnosis speaks volumes of the doctor that gives it and little about the child in question.

At the baseline kids are sensible.  Kids are raw and honest in their words and actions.  They may not say what adults want to hear but kids don’t act like jerks for no reason.  Their behavior speaks.  If a child is continually acting out, it’s not just that they can’t conform or enjoy being defiant – something is wrong in their emotions or in their thinking or in their problem solving skills.  They are hurting in some way and are doing what they know to show it.

I feel the same way about the diagnosis ‘Oppositional Defiant Disorder’.  That’s just doctor speak for ‘Asshole’ when it really should read ‘Sad and Hurting Child’.  Children that are oppostional are hurting inside and this diagnosis serves no purpose other than to say this child is hurting and I would rather just label them as an asshole than to do my medical duty and try and figure out why.

Where do you go for support groups?

I am a member of a few support groups and I find them to be very helpful.  You can find online support groups through The Balanced Mind Foundation (used to be The Child and Adolescent Bipolar Foundation) and  yahoo groups.  In person groups can be found through NAMI and DBSA,  just to name a few.

Do you think that all people who have been diagnosed with bipolar disorder need to be on psychiatric medications for their whole lives?

I think bipolar disorder is a spetrum disorder so it affects different people in different ways and to different degrees.  Yes, some people need medication their whole life.  Others not.  Some people can manage symptoms on their own.  Others cannot.  I think it’s a fallacy to assume that what works for one person will work for another.  And it is a fallacy to assume that what works for one person in one stage of their life will be necessary for their whole life.  I think teens with bipolar disorder have a tough time because of the hormones involved and the very strong rush of emotions coupled with low levels of life expereince and incomplete brain development.  Older adults may not have the same stabilization needs as teens do.   It’s all a process that needs continual monitoring. And overall I think the less meds the better.  However, it is also very important to have control over one’s own life choices and emotions as you cannot successfully live independently and have successful relationships without this and lots of people cannot do with this without the help of medication.  And there is no shame in that.  Just as there is no shame in taking medication for any other disease or illness/imbalance.

A satisfying, productive, and healthy life with mature relationships is the goal.

_________

I hope this has been helpful.  I’m not sure I addressed everything but I hope I did.

Thanks for the emails.

Touche.

______

Anyhoo, Happy Friday!   I am so glad it’s the weekend.  Not that we have any fantastic plans or anything but it’s always nice to have a couple of days with Don home.

In the past few weeks we have been trying to adjust Rye’s meds.  We started with Lithium and it worked.  Then we went to a high dose (1200mg/day) and it didn’t work.  In fact, he very quickly got toxic.  So now we are back down.  Way down (300mg/day).  And it seems to be good [which brings up the whole topic of 'therapeutic' doses but we'll save that for another day].   We started with Cogentin and that worked.  Until it didn’t.  It turns out it is just way too strong for Rye to take daily.  It helped with muscle tension but over time it made him too relaxed and slow and made his speech heavy and slurry as his tongue was too relaxed (which may have been the Lithium as well but it was hard to tell).  So we are keeping that one for an ‘as needed’.  And we lowered the Seroquel.  We are to 50 mg/day.  Which seems to be plenty now with the Lithium on board.  And the Depakote is still at its regular level.   We’ll see how this combo plays out over the next few weeks.  Hopefully over time we can up the Lithium a little bit and with that get rid of the Seroquel but I think we need to go slow.

So, for now Rye is perky.  And alert.  And seemingly back to his regular self which it seems like a long time since we’ve seen.  Last weekend Don and Rye and I had a really nice time Saturday night going out to eat and then going to see the musical ‘Oklahoma’.  We sat in the front row of the theater so we could really feel the energy of the show and the performance was really good so we all really enjoyed. it.  The theater itself was spectacular.

Over the past few weeks I have not been working as hard as I need to be due to trying to get Rye straightened out.  I’m hoping next week to get back on a good schedule.

We found a psychologist for Rye.  He is an older gentleman (Rye’s preference) with over 30 years of experience and Rye starts seeing him weekly soon and I’m hoping that’s a good fit.  As it turns out, good therapists that see teens are hard to find.

Rye has decided that he is no longer mad at me about the move.  He was really angry at me for a long time after the move and I think that had a lot to do with his depression but he seems to be moving through that.  He told me a week or two ago that he is just tired of being mad at me.  Seems reasonable.  I’m glad he is not going to hold onto that forever as I can understand why he was mad but change is a part of life and we have to move through these feelings to move on and grow and start enjoying life again.

Don has started acupuncture and is really into it.  He says it really helps.  Rye and I will soon start seeing his practitioner as we have also both done this in the past and it has helped us as well.

And now we start planning for summer.  I’m not sure what the heck we are going to do with Rye this summer.  I’ve looked into teen adventure trips like Outward Bound for him but they are quite expensive and probably prohibitively so at this point.   At 14 he’s too old for day camps and still kind of young to get a job.  I guess I might look into some overnight camps.  Ughh.  Not easy.  What do most people do with 14 year olds in the summer?

Rye is getting excited about high school.  We have started registering and he is really excited about the elective classes they offer so that is fun to watch.  For a kid that pretty much hates school it’s nice to see him excited about something relating to school.

Rye has also grown.  He is now 6′4″ with his running shoes on.  And he is taking a fitness class in school that includes weight lifting where he can max out one of the weight machines so he’s pretty thrilled about that.  He can do pull-press reps of over 240 pounds.  Crazy.  The kid is a power house.   His fitness teacher is trying to get him strong enough to where if he plays football next year he can just pick up some of the players and move them out of his way.  That cracks me up.  And I’m not sure whether or not he wants to play football next year but it’s good to get in shape in the meantime.

And I guess that’s about it for now.  We are heading to the beach in a few weeks for Spring Break/Easter to use a beach house that one of Don’s clients let us use for free.  That will be really nice!  We’ve yet to go to the beach on this coast since the move and we are all looking forward to it.

Have a great weekend!

Holy Mother Of God, we have been on a wild ride this past month.  The impact of the move has finally hit Rye and he is struggling with Stability.  And we are all along for the ride.

On the good news of things, we do have a new psychiatrist now.  And we are starting Rye on Lithium this week.  The hope is that we will get the Lithium up to a therapeutic level and then wean him off the Seroquel.  Rye really does not like the Seroquel but until we have something else on board to replace it and that works better,  it’s not realistic to take him off of it.   From what I have read the combination of Depakote and Lithium is one of the best proven long term stability solutions there is for Bipolar 1.  I hope that proves to be the case.

In other good news, a few weeks back I went out of town for a girls weekend and it was beyond wonderful.  It was great to see some friends I had not seen in many years and it made me feel warm and fuzzy inside.

On the not so great news,  Rye is really having a hard time and as I have now learned, it is not so easy to get help in the Pacific Northwest.   Hospitals won’t take kids and help them get stable unless they are actively suicidal (and I don’t mean like in the South where if they are struggling and mentioning suicide daily that is enough – here they better have a knife in their arm and be bleeding from an artery or they don’t consider it to be real) or are wildly psychotic.  Anything less than that is considered to be just no big deal.  Honestly, everybody here seems to be a little bit stoned and not too concerned about much of anything.  That takes some adjusting to after coming from the very conservative South.

Anyway, hopefully with the start of the Lithium and a little more time passing things will start to smooth out.

I sure hope so.

We met with the new psychiatrist today.  Just Don and I.  The first meeting is just us, then the second meeting just Rye, then the third just Don and I again.    In this meeting Don and I recounted the history of our journey with Rye and the symptoms and the diagnoses and the medications we have tried.  What worked, what didn’t, what happened when, and on and on.  The doctor diligently took notes and asked questions.  We answered to the best of our ability.

When we left the office, I asked Don what he thought.

Well, he said, I’m not sure.  He was pretty serious and not nearly as personable as the last psychiatrist we met with (we met with a different psychiatrist last week).  Yes, I agree, I said.  On the plus side this one is willing to take Rye as a patient and Shoes wasn’t [we call the other doctor Shoes because he is about 80 years old and wore these great sporty tennis shoe/Merrill type shoes that made him look really adorable and perky.  And Don and I both loved him.  He was super intelligent and really down to earth.  But, Shoes no longer takes any clients that experience delusions in their highs and lows.  He only takes simpler cases now and didn't want to take a child that might need Lithium.  He did refer us to our Educational Consultant, though, who is a great asset so it was well worth the visit].  True, said Don.  And to be honest, I said, it is quite a history when you lay it all out.  I mean, it’s been a fairly long and winding road and to his credit I think this doctor was just taking it seriously and trying to pay attention and hear everything we were saying as well as process it all.  It’s a lot to process.  That’s true, Don said.  It’s amazing what one’s normal can become. I guess we’ll just have to wait and see and hope for the best.  Agreed, I said.

And we left it at that.

Things are looking up.

We have made some adjustments to the school schedule.  We have hired an educational consultant.  We have pushed up our appointment with the new psychiatrist.  I now have a therapist who I look forward to seeing every week.  Rye will soon have a therapist.

And Rye is coming back to his regular self.  He has snapped out of his ‘blurredness’ and is present.  Simply changing his school day to a half day helped instantly.   It’s incredible the impact that school stress has on this kid.

So, I am feeling more optimistic now.  I feel like we are getting a support network of high quality advisors in place and I’m so glad to have perky and present Rye back.  That said, I’m not sure that this kid will ever be able to handle full time public school.  I don’t know.  Maybe with a med adjustment he will.  But maybe not.  And really, does it matter?  Not really.  Rye already knows what he what to do with his life.  He is a really hard worker and he has a chosen field that he absolutely loves, where he is outside all day, and suits him perfectly.  We just need to get him through the next few of years of school and get him enough education so he can move on to his technical training and move on with his life.

Onward and upward.

Here we are for the past week +.  I am the giraffe/elephant.  Rye is the bear.  I am exhausted.

After a good long stretch of stability, we have hit a bump in the road.  This past week Rye morphed into a person I have not seem in a very long time with symptoms I have not seen in a long time.  It’s tough to see.  It’s tough to handle.  And it’s taking a toll on all of us.

I have pulled Rye from school the past few days and with that I can see his psyche relaxing somewhat.  Next week he will return to school on a half day schedule.  I think that will help as far as school goes but I’m not sure.  Maybe not.

In addition to changes in school, Rye needs a med adjustment. We meet with the new psychiatrist in a little over a week and I am trying to get in sooner but don’t have any guarantees.  Appointments with child and adolescent psychiatrists are hard to come by.  I’m hoping to try Lithium when we do get in.

Right now I am worried for the future.  I know Rye is unstable but I’m not sure how to get back to normal.  He does not qualify for hospitalization as he is not a danger to himself or others.  He is ‘off’, though, and not functioning well.   He won’t do any of his sports, he can’t handle school.  And this isn’t just teen defiance. He is unwell. You can see it.  You can feel it.  For the first time in a long time I feel at a complete loss of where to go and what to do.  And Rye will barely leave my side, which is also not a good sign, so it’s hard to even have the time and freedom to call and research what to.

For the first time in a long time I really just feel like…I don’t know.

And we need some help.

_______

the art above is called ‘Tightrope Artist’ – I don’t know the artist who made it or I would give him or her credit here

As we had an incident arise the other day that brought up one of the most important things I have learned over the years, I thought I would share in case it might help someone else.  And that is:

How to avert a rage or complete meltdown.

Now, let me preface this by saying that if your child or teen is not at least reasonably stable, this probably won’t work too well.  But, assuming you get to a place where your child is able to have some forethought, is not completely impulsive, is not completely reactive, and is able to be introspective [and some of this just comes with age] – this has worked wonders for me.

So, when things start escalating and Rye’s emotions [anxiety, fear, frustration,etc] start taking over and I can feel the tension in the room rising and feeling as though things are going to get precarious, I walk over to Rye, gently take his head in my hands to make sure he is making eye contact with me, connecting with me, and hearing me, and I say,

I can see that you are struggling.  What can I do to help?  What do you need from me?

And with that, he will tell me.  Now, don’t get me wrong, he may not know exactly what he needs at first.  And he may say just that.  But, just by asking the question itself I acknowledge his struggle and let him know his challenge and emotion are being heard and seen.  This question, in turn, changes his mind path, gets him thinking on solutions instead of reactions, and it starts a dialogue.  And from there we can usually figure out what will help him and we can address his concerns.

And for us, this works pretty much every time at averting big meltdowns.

Now, I will say that the answers I get aren’t always completely rational or literal or right on the mark and you have to learn to work around that and be flexible with that.  For example, the other day when Rye started to escalate the answer I got was that he just wanted me to love him.  Well, ok, obviously I love him.  And he knows this.  But what he was more meaning to say was that he was scared and frustrated and had some issues he didn’t know how to problem solve.  And his frustration and fear was taking over and whipping him into a complete frenzy.  So, in response to his answer to my question, I don’t be sarcastic, I don’t brush him off and/or tell him his concern is ridiculous or that he knows I love him etc. etc. but instead I act as though I’ve never said it before because this is what he needs.  I told him very clearly that I love him. That I always love him.  And I looked him the eye as I said it and made sure he was looking me in the eye as well.  I need for him to hear me.  And for him to feel my sincerity.  And then I said, now that you know I love you, what else can I do to help?   What do you need from me?  And we went from there.  In a calm, rational discussion in which we went on to solve some problems that were bugging him.

Rage averted.

So…is this always the way I have handled these situations?  ha,ha,ha…no.  I have handled them in 80 different ways that didn’t work. And I have handled then in ways that escalated the issue verses de-escalating it.  So I have learned the hard way.  But, the good news?

This works.

And it’s so basic.  You know, no one ever just tells you to ask your child what they need.   But the truth is, even when they are totally out of control, they often know what they need.  Or at least close enough.

And the biggest benefit?  This process, done over the years, teaches your child how to be self aware, help themselves, and avert their own meltdowns.  Through repetition it teaches them to problem solve their own emotional takeovers.

And this is key for being successful in life.   Knowing how to be self aware and ask others for help when needed.