The Land of In-between

The Land of In Between

It is my understanding that the place where catholics believe a sinner goes to explain their sins and wait for a determination between heaven and hell is called purgatory.  I find it interesting that the dictionary also defines “purgatory” as a place of mental anguish and suffering.  I can say with great certainty that the land of in between is not a comfortable place and definitely understand why mental anguish could be used to describe such a location.  When one is on their way up, there is movement and focus on forward motion.  When one is on their way down, their is focus and effort to stop the slide.  Sitting in between leaves little to productively focus.  It is like driving through a valley for hours on a straight highway, time may be passing but the mind wanders and plays tricks on the thoughts.  It is a chance to survey far off in all directions where you see nothing but you see the wind blow, the dust devils, the heat vapors.

Here I sit.  My “in between” is in all directions of my life.  It would be so simple to think it is just about me, having graduated from law school, taken and failed the bar exam once and now waiting for results from my second and hopefully final go at the exam that is hopefully going to change my life.  Wouldn’t that be enough to cause mental anguish and suffering?  I mean, let me go further with this, I have been working full time and going to law school for four years and then went down to part time in order to appropriately study for the bar exam.  It is not cheap to take the bar and most success comes from taking months off prior to the exam to hyper focus and cram your brain full of crap needed to barf back out during exam days.  I stocked up, begged, borrowed and got through the first exam giving it my all.  I fell short. Honestly, it was by less than 1% but short nonetheless.  

So then I needed to pick my crushed soul back up, dust it off and rally into the next exam by begging and borrowing more from every resource, even my own physical stamina.  You want to see how fast a 48 year old woman can gain weight?  Just make her sit in a chair for 10-12 hours a day staring at a computer and handwriting notes.  And for extra measure, tell her that her whole financial future relies on this success and watch the cortisol pack on the pounds. It is okay, Cortisol and I go way back to when my son was younger and randomly launched into violent self injurious attacks several times a day.  I have felt the warm hug of the pounds of stress and lack of sleep for almost two decades now. I would like to consider the pounds of fat compensation for the lack of functioning adrenal glands since I’m pretty sure they shriveled up and moved out years ago.

Now I wait.  It has been a two and a half month wait since I took he bar exam last.  It is shorter than the other wait from he first time.  The first wait was four months.  It is different this time.  I now know what it is like to think you gave it your all and still fall short.  I know what it is like to get excited and put together a resume in preparation to move forward and then have no use for it…yet.  I know what it is like to see that look on my kids faces when they finally register not only that I failed but that we are going to live in this weird, stressed out desperate place for another six months.  I know what it is like to be working at an internship with a job potential and watch it slip through my finger tips because I fell short.  Did I jinx it by being happy and excited and hopeful?  Was I cocky? 

Wouldn’t it be great if that was my only place of purgatory?  If my part time work was steady and stable and my kids were in a stable place and my home was stable?  Would the bar exam/legal career purgatory be enough mental anguish?  Apparently not.  My place of work is on the verge of shutting down, being sold, self destructing and it is my understanding that with only two weeks notice at any time I may not have a location to work from.  Yes, that is the worst case scenario leaving the best case scenario that someone awesome buys the business that houses my work and they love it, care a whole bunch and grandfather me in at a low sublease and all is hunky dory.  It could happen.  I have absolutely no control over this whole process.  I could bail out and go find somewhere else but have chosen to wait it out.  Reason being that my clients have stuck through my off and on bar exam absences and potential shift at any moment to less hours due to launching legal career that throwing a geographical change on them will likely bring an even deeper shedding of clients.  After 2 bar exams I have lost a significant number of clients as it is and I don’t want to invest in building up my when my true direction is to change careers altogether.  So, I take it one day at a time, one client at a time. 

Then there are my kids.  One is about to turn 18 and reach adulthood.  He is a kid with high functioning disabilities that we have held together with a variety of services and assistance over the years that will all go away on his 18th birthday.  This includes various financial support and resources for therapies.  There is the whole power of attorney vs. partial conservation debate going on trying to determine what is the best way to protect him and be able to advocate for him when needed but only when needed.  When he turns 18 and he can start working, what will happen? How will he do? Will he remain stable? Will it overwhelm him?  Will he rise to the challenge and impress the shit out of me like I know he can?  Again, it could go either way and I have no control over this process. It is his journey that I can only parent.  I equate parenting to that of a pinball machine.  I am the paddles the try to push him up and keep him from falling into the hole and when all forces come together to help him hit some points and ring some bells and flash some lights I cheer loud and proud.   I am very lucky, he has scored all time highs in his life despite the many “tilt” messages he has been dealt.  

Then my other kiddo is one who is still in struggle and shift mode.  Her health issues went in to full bloom this last year and caused her whole life to come crashing down painfully around her.  It took us so long to find her help but even the help is not returning her to full capacity and the pain and struggle wears on her and by proxy, me.  Nobody knows if she will get back to full physical strength or if her health issues will continue to flare up on her an knock her down.   She begs for me to help her but I am again with little power to help or comfort her. I love her full strength but can not make her well.  How much does a parent push or hang back and let her figure out her direction in all that has shifted?  How much of this is her personal journey that I need to simply parent and not intervene? How much do I have to watch her suffer in pain while I pray and hope she can find joy and happiness despite it all.  

Then there is prayer. I have always been a relatively spiritual person with full understanding and without doubt of God, the Higher Power.  I have studied various forms of acknowledging that power and have always believed in prayer and moving energy.  I am not sure if I believe any of it anymore. For simplicity sake I say it is the helplessness I felt watching my daughter suffer that has made me question it all but that is just a drop in the bucket.  Dare I say it was the straw that broke the camels back.  It was all of it.  It is all of it.  The crap ass life I had, better than some, worse than others.  The abuse and attacks I overcame.  The survivor label and so on I have done therapy to help me assimilate.  The bad marriage.  The abuse.  The autism. The kid with such severe mental illness breaks that the psychiatrist told me to consider the child I once knew as dead and learn to embrace the new child.  I rallied and prayed and meditated and had faith and hope and believed in better each and every day.  Then the girl got so sick and felt so much pain and nobody could help her, seemingly not even God.  Similar to the bar exam experience as an encapsulated piece of that give it your all mentality and still falling short.  So what do I believe in now?  I have no idea.  I can’t reconcile any of it.  I keep waiting for inspiration or the ability to pray again without feeling so much anger and sadness and betrayal.  

My home has been beaten, abused, torn up and punched through and is in great need of repair, freshening, deep cleaning and more but there are no resources left.  I await the gate to open to achieve and acquire more resources and it is here that we loop right back to the beginning.  I drive through this valley letting time pass as I watch the dust devils of memories, hope, emotions and anxiety swirl about.  I day dream of what it will be like if this happens or that happens and I have moments of absolute paralysis in fear of what if this happened or that happened.  Like the stuffing that fall out of the holes in my couch, I pick myself up, stuff myself back in and put a blanket over it knowing that one day I hope to do better.  Until then, I drive in the land of in between.  Purgatory 

So what do I do in purgatory?  How does one handle the land of in between? I will tell you that my grace, along with my faith, have fallen away.  I whine and complain and vomit a lot.  When I felt hopeless I could always turn to prayer but what do you do when you think prayer is futile. I mean, really, what can I do. I just keep going.  Yes, we can quote Dory.  I keep on interning and trying to learn new skills for an impending legal career.  The more I can do now and learn the more employable I will be one day which can only counter act any challenges to employment that my degenerative vision might bring.  I look for new agencies and resources to help my soon to be adult child.  I research power of attorney options.  Best possible purgatory antidote was getting a puppy which will one day be trained to be my low vision dog.  Puppy therapy is always good and my puppy is particularly amazing. I avoid people who don’t know my status of fragile sanity.  I keep taking girl to doctors. I keep taking care of the clients that remained faithful.  I contemplate the benefits and detriments to taking up drinking as a serious habit.  I cave in to junk food more than I should in an effort to numb some of the mental anguish. Sometimes I fantasize about driving away, just keep driving, like Thelma and Louise, “drive”.  Mostly, I just get up and take each day as it comes and try not to vomit each meal.  I take a lot of antacids.   

While I am not catholic and have only known very little about the catholic religion, I use their language for my in between status. I am here, confessing my sins of the soul as I wait for the determination of heaven or hell.  I drive the long valley highway hallucinating on my memories and emotions trying to pass the time.  I am not lost and I am not moving up or down and it takes all focus just to keep up with the movement of time.  I love my puppy and get drunk on puppy breath.  I hold on to my tiny mustard seed of hope and wait. 

Denial and Faith

Such an over used concept, "denial" and always categorized as something that we do NOT want to use...denial is baaaaaad.  Is it?  I beg to differ.

Looking at it from the perspective of my son for a minute, although I would never be so bold to say I speak for him without his permission, I do not.  I speak from the perspective of his mother watching him with pride.  Although my son crashed and burned BAD his first attempt at public high school and his mental illness triggered on top of his significant challenges with autistic spectrum disorder he expressed his desire at the end of last school year to try public high school again.  Yes, of course I was terrified out of my mind.  Nobody will ever understand what we went through in order to pull him through the last two years...a move, homeschooling while working and going to school myself, sleepless nights, hospital stays, ER, baptism by fire of the mental health system and so much more.  But what can you do when your kid says he wants to try it again...you have GOT to let them try.  When I asked him his reason, he wanted to try more normalcy.

Here is my friend denial in the open.  I have spent a year and a half under the counsel of his psychiatrist trying to break me down and tell me "he is not normal...his normal got hit by a truck and is now dead...he is mentally ill and my old sense of normal will never return."  That was a punch that took some recovery.  I mean, through his autism diagnosis I was told to try to teach him to fit in to "normal" and he has to learn to keep up with the real world and the neuro-typicals.  Once the mental illness triggered I was told to stop trying to help him fit in to "normal" and instead just try to help him find happiness.  I felt like one of those looney toon cartoon characters that shake their head so hard trying to find sense in it all that a weird eydiddyaydiddy noise comes out.

So, the boy started public high school again, IEP in place, all on board, fingers crossed and surrounded by prayers so hard my knees are bruised.  He has had some major ups and downs.  Bumps in the road that we slammed in to so hard we saw stars.  At one point though, he chose to capitalize on denial.  He said to me, "I don't have a single friend and I don't understand anybody at that school but I have decided to care anyway."  He decided to care enough to get up and do it every morning, no matter what mood hits him, no matter how anxious he is, no matter if hallucinations trigger or not, no matter if he gets manic in the middle of a class and can not stop laughing for hours, no matter if he becomes so depressed that he can barely breathe, no matter WHAT he is going to care and get up and go the next day and the next.  No matter how hard it is, he convinces himself it is worth getting up the next day and trying again. If that isn't using denial and faith together like siamese twins on a hot date I don't know what is!  Maybe tomorrow will be better.  Maybe there won't be as much chaos or anxiety. Maybe tomorrow he will understand a fellow teen long enough to make a friend.

Then there is my own personal relationship with denial.  Mine is a little more seductive.  I've been given the cold hard facts from the psych doc.  Yep, those are the kick-in-the-gut facts that make me stagger for a day or two.  Once I catch my breath I get seduced in to denial all over again.  Maybe it won't get worse. Maybe he will be ok.  Maybe he will make a friend today.  Maybe he is not as odd as his sister describes him to be. Maybe we are in a weird enough small town that he will be fully accepted and it will all be ok.  maybe it will all be ok.  Maybe he will not need to go up on his meds.  Maybe he can beat his mental illness and overcome the autism like a superhero.  Maybe he will be able to wake himself up. Maybe his moods will stabilize. Maybe he won't damage anymore property. Maybe he will grow out of his anxieties.  Maybe he won't hallucinate again. Maybe it will all be ok.  Maybe it is all okay now and all the bad stuff is in the past.

Then the school calls.  Denial bubble busted by the kick-in-the-gut cold hard facts.  "No, there has been no change in his meds and I'm sorry if he is disturbing people or being a disruption".  "Yes, he is incredibly intelligent Ms. Teacher and I know he could be Acing all his classes but the fact that he shows up every day is in his own right a form of Acing all his classes so back the TRUCK off".  The moment at the psych doc when you get some more cold hard facts...he is getting older, is he safe to drive, is he ever going to be independent, is he going to be able to fulfill his dream of being an auto tech.  Such a down graded dream from the boy I once knew and yet my friend denial has asked me to grab on to that dream with both hands and hold on.

Denial keeps me going, keeps my boy going.  I've heard the phrase "denial ain't just a river in Egypt" but you know what, I build a boat for my denial river and sail on it every day.  The cold hard facts may bust a hole in it but we bail and bail and patch the holes and keep going.  Catch the wind where we can and ride out the quiet times.  God Bless Denial!!!! Amen.

...and then there is "the sib"

There is a lot of focus on one of my children but part of our family dynamic must be turned to his sister.  She is the "sib" to autism and now the "sib" to bipolar.  She has many typical traits of a sibling to a person who struggles with autism.  She feels left out, pushed aside and resentful of all the attention her brother gets.  She feels her brother gets away with EVERYTHING and that everything in her world is unfair.

In her defense, my daughter has literally been pushed aside and out of harms way.  My big eyed tiny toddler of a daughter would try to get close to me for comfort when her brother used to rage and act scary and in order to keep her safe, I had to push her back and out of the way of flailing body parts as I restrained her brother.  We have moved several times to accommodate her brother's educational needs which has led to her switching schools, leaving friends, packing up and changing her home several times.  She has had her toys and treasured belongings destroyed by her brothers outbursts.  There have been many occasions where we have not attended special fun events or we have had to leave in haste as her brother exploded and embarrassed her as folks would watch us exit with a screaming freaked out child who looked like had been possessed by satan.

Even worse then some of these regular events in our lives is the fact that my daughter loves her brother dearly.  They have been best friends.  She taught him to play.  He would line his cars up in crop circle like patterns for hours and before she could speak, she would toddle over and grab him and he complied lovingly and innocently to her physical demands.  She put a tea cup in his hand and a stuffed animal and physically forced him to pretend to drink out of it.  They sat and gighled together, he because he thought it was so silly and she because her happiness to have him at her tea party.  They have walked hand in hand together through thick and thin.  Yet, her brother can turn on her for no reason whatsoever.  She touched him wrong, he became overwhelmed, he gets anxious and can not articulate it without violent explosive behavior.

This was the world of being sib to autism and now she is learning to walk the world of being sib to bipolar.  Every time she comes home she is not sure what she will walk in to, a manic brother, a suicidal brother, a belligerent brother or even the fear of walking in to a dead brother.   His dark moods make it nearly impossible to converse with him.  She wants to discuss her friends, school and the silly jokes they tell and he wants to discuss why humanity is stupid if he wants to converse at all.  She has said several times over the last year and a half, "I just want my brother back!"  She is afraid of him and for him.  Anything she says to him can be twisted by his brain and used against him or her.  The world is a crazy, chaotic and fragile place.

I am her one source of stability and she is seeing me stretched to my limits, exhausted, frazzled, praying, crying and trying to deal with my own fear and pain.  She does not understand why I need to parent him different, why I can't fix him, how did it all turn so bad so fast and why can't we stop it from getting worse.  She hates all of it and loves him and loves me.  She wishes she did not love him any  more because it is just too scary and hard.  She tries to hate him.  Sometimes she tries to hate me.

She has her own challenges with ADD and pediatric fibromyalgia and anxiety disorder.  She is 13 and moody and hormonal and struggling with the typical 13 year old crazies.  It is hard to focus when the world around you is swirling in chaos. Through all of this, she is one of the most beautiful girls I have ever seen.  She is loving and generous and will defend anyone with a "difference" and has been known to get up into a bullies face to defend other kids and leap to the aid of a special needs kid at every school she has attended.  She has a magical way with animals and children.  She is healing to others.  Some of these traits are gifts from her challenging family, some are just gifts from God to her.  I can not protect her from her brother or our chaotic life any more then I am already doing.  I try to show her love and support her positive activities to put action behind my pride and adoration of her.  It is never enough and I know that.  Since my babies came along, I have said that my son is the love of my life and my daughter is the light of my life and together they are the beats of my heart.

She will always be the sib to all the challenges her brother has and it is a heavy burden to bear.  Because she loves him, she will rise to the challenge and because I love her I will beam with pride for the light she shines on the world.  I know that the Higher Power put us together as a family for a reason, some believe we chose each other in heaven before we came, whatever it is, we were meant to be together through the pain, the love, the fear, the darkness and the light.  She is more beautiful because of my son.  his darkness makes her light shine so bright.

Cycles of Grief

There are actually some days that I am just not fit to go into public.  I can't explain why those days happen but they do.  For whatever reason, there are days that it all just smacks me in the face. Sunday was one of those days.  My son wanted to go to church which is always a rare and positive thing so I planned on taking him to church.  We woke up and he was grumpy, snappy, even somewhat explosive.  The morning was a bumpy one.  To ass salt to the wound my daughter had to tell me how embarrassing I was to her and that was it for me.  All done.  I just did not want to find the strength to push through it. Oh sure, I know all the realities of teenagers, hormones, mood disorders and not to give in, take it personal etc but not that day...it just was like hitting a nerve that rippled through my core.

I don't want to lose the opportunity to go to church though, right?  So we went. I waited until church was starting so I could sneak in to the back and sit as unnoticed as possible.  I did not want to talk to anybody, have anyone see me when I felt like I had just been punched in the gut. So then I am sitting there and there is this family in front of me with a little boy.  He stands on the pew and puts his arms around his mom.  He was all of maybe 7.  She leans in towards him and smiles.  Damnit, face started leaking.  Grieving.  I miss this moment in time that I had with my kids.  That moment when I did not know of mental illness and when he was little and I thought I could "cure" the autism and his life was bursting with potential.  I miss my own innocence in parenting. My daughter was the hugger, and her arms would wrap around me.  I called her velcro baby.  Now I embarrass her.   Ugh.  Just a day of grieving I guess.

A while back I went to a 3 day seminar on neurological differences given by the U.C. Davis MIND Institute,they are fantastic! One of the classes discussed how parents of kids with neurological differences go through a grieving cycle. It's not like a death grieving.  There is no end for us.  I'm not qualifying it as better or worse just acknowledging the truth in the cycle.  When you first find out about the disorder, you grieve potential lost and then you move on, become accustomed to the new level of normal.  As is human nature, you begin to see positive signs and maybe even grow hope for a bit then BAM...nope, the disorder rears its head and you see the potential lost again, hopes fade, grief wins again.  It cycles and turns around and over again and again.  It doesn't mean there isn't progress, it just means that the grief is the acknowledgment of what is not "typical" what is "different" and what is not what you expected or hoped for for your child.


It is times like these of late that I want so very much to remember that the powers greater than myself are limitless.  I feel extremely overwhelmed and fatigued and yet I still am the Mayor of Crazytown and I have midterms coming, kids to manage, a fraction of my business left to run, medical and psychiatric appointments to schedule and keep, a house to manage and a fundraising campaign to promote.  The grief, the sadness and the fear have limits.  They hide the light, cover it like nightfall. The darkness offers only limited sight.  The darkness passes, the pain fades and the light of limitless power returns. It is a cycle. It is human nature, I guess.  I will move through it.  Some days I will have more grace then others and some days I will laugh at it.  Some days I will want to hide and let it stink.  I just gotta keep moving...keep reaching towards the source of limitless power and know that it will pull me through.  This is an honest blog but kind of dark...I promise the next one will be about how I find humor in it all. Bipolar can be funny too!

Reach Out

I think we would all like to imagine ourselves as non judgmental and accepting and open to one another's differences.  Oh how I wish this were true for the sake of my son right now.  I admit, even my own journey has been filed with judgements and thoughts and when you throw in the words "mental illness" it has certainly thrown out red flags.  We understand so little about it all.  It is so scary and hard to understand.

There are low levels of judgement and criticism, even fear, to different forms of mental illness.  Depression and anxiety are more widely accepted and tolerated although those who suffer from these illnesses endure a lot of judgement and criticism such as, "just pull yourself together...pull yourself up by your boot straps...don't let it get to you" statements.  I'm sure those are about as helpful to the self esteem of the mentally ill as candy to a diabetic.  Then you get into the more intense forms of mental illness, the scarier ones.  Yep, we are talking, bipolar, schizoeffective disorder and schizophrenia.  You want to get some weird looks from perfectly innocent strangers, say those words in public places.

I admit, I had a guy hit on me in a church group once and he told me he had schizophrenia...I ran for the hills!  In my defense, I was already dealing with being a single parent of an autistic kid and an ADD tornado girl so my figuring was, I had enough problems.  I don't know that if I didn't have these excuses if I would not have run for the hills anyway.

Here's the thing...I brought my son in to a local store here in town.  I know the woman who runs it and her son works there.  He is the same age as my son and goes to the same school.  When my son followed me in to the store I casually but enthusiastically made conversation by acknowledging that the two of them are in the same grade in the same school.  My son mumble an acknowledgement and I saw the other boy tense up.  I asked if he knew my son.  He stopped making eye contact with me and turned his head slightly away and answered "yes".  Everything got uncomfortable...tense...loud but unspoken.  This poor kid felt so awkward but he thought my son was a freak.  He did not want to be friendly to my son.  My son felt it but took it in stride, like it happens every day.  My heart broke.  I felt crushed.  I wanted to ask the kid in my protective Mamma Bear energy, "what in the hell is the matter with you?!?!",  but I knew.  I can't even say I blame him.  I might have been the same way at 15.  It's survival of the fittest in teen land.

The sad part is, that in my experience and recent education, it is just this isolation that aster-bates the symptoms of mental illness.  How can I convince my son he is not a freak or that he is not isolated and that people really do like him when this kid embodies a typical reception among his peers.  Can you imagine the darkness that would result?

How do we teach our kids? How do we teach ourselves, each other?  We are all connected, different, weird, freaks.  Some of us show it more then others. My son has an added excuse of autistic spectrum disorder which is more palatable among the community but still weird for his peers to understand.  We all have our quirks, our fears, our oddities.  We are all part of the human family, connected in our similarities and differences.  How do we reach out beyond our fears and judgements?  How can I teach the world to reach out and accept my son? How do I protect him from those who don't, won't or can't?

adjustments

Went to see the psych doc today with my son Lexi. I really like this doctor because she is so direct and straight forward.  She talks to us intelligently and does not have a God complex.  She also seems ot really care about my son as a person, not just a patient.  I like a doctor who see's how amazing he is and not just whatever they are treating.  I have found that to be a rare gift on our journey with many many doctors and medical specialists over the years.

As much as I really like this doctor, the news she delivers is always tough to swallow.  It's not unbelievable, it's just always kind of bad news.  First it was the bipolar diagnosis, then the upgrade to bipolar one and then the upgrade to bipolar mixed with some other serious mental illness all to be mixed in and not replaced by the autism, tourettes, ADD, anxiety disorder and so on.  We finally seem to have my son's latest "episode" under control.  He is on three different meds and for the last week symptoms have gone way way down. She says he is not "stable" he is "heavily medicated" and if we kept him at this level of medication it would/could cause harm.  So, we have to lighten up on some meds.  Her explanation is that we need to find the "sweet spot" with his medicine cocktail to where he is having low symptoms that he can manage or learn to manage but not so medicated that it could harm him or dull him too much.  We are taking out half of one of the meds.  We are also switching the timing of when he takes two of the meds.  All of this adjustment shall begin tomorrow.

On the medication issue, I am glad to lighten up on meds but I am terrified of setting off another spiral. When I talked frankly about this with the doc she said that she can guarantee that because of his age and the early onset of his mental illness there will definitely be other spirals and episodes.  I asked her when I can breathe out and know that my son is somewhat stable.  Her answer...are you ready...by around 30.  I guffawed out loud.  WHAT?!?!  Just a reminder...currently he is 15.  WHAT?!?!  I gathered myself and asked her when we can expect him to somewhat stabilize-just a little-relax into his meds a bit, stop hiding the knives and worrying about suicide.  According to her, we can bring the knives out again but never stop worrying, being on alert and communicating with him as openly as possible.  She says he is still in very early stages of treatment and adjusting meds can be a rough road and even when we get it all adjusted and he seems fine, it will change, it will get worse.  Due to the true nature of his diagnosis and his age of onset she says he will get worse.  Not good news.

So then I go later to the family therapist who has been more of a "you have a kid with mental illness now" coach.  He told me that I need to stop acting as if this is a short term crisis and begin shifting and adjusting into a space of chronic management.  I got the "you need to take care of you" speech which is valid and all but still blech.  I told him that I am not sure how to move out of crisis mode when it feels like the crisis is not over, it keeps unfolding and the news just keeps sucking more and more every day.  I am not even sure how deep this hole will go, how can I plan a strategy to get out of it.  His response was that I may not ever get out of this hole, it might keep getting deeper and deeper for awhile. I need to learn to take time to feel what is happening and "let down" instead of just pushing through all the time.  It is his philosophy that if I do not take time to do this I will not be able to be strong enough to manage my family well.

Well crap.  He's probably right but I don't like it.  I certainly don't want to take time to "feel". BLECH. This feeling stuff sucks!  Who wants to take time and feel what it is like to realize that your son will spend a life time battling darkness and demons.  Who wants to take time to sit with the suffering he feels and his CHRONIC condition.  Who in the HELL wants to ponder the possibilities, the fears, the alternate scenarios.  I'd much rather push through and find the bottom of the hole, find answers, analyze and assess the damage and figure out how to repair it.  I must adjust.  I find myself so much less tolerant then I used to be. I find myself wanting to curse at traffic and unable to listen to the news for the reign of stupidity that surrounds our culture.  I find myself wanting to punch other people for their self centered arrogance insensitive nature and wanting to cut off anybody who does not want to take time to see reality, to see my family and my son for how amazing he is and will always be but instead sees his diagnosis with fear based thinking.

I know that my son is amazing. I know he CAN aw and amaze doctors and that we blew past all expectations of his autism diagnosis.  I know that doctors do not know everything and that each individual is different.  I know all that and still I am struggling to find hope. Not faith...hope.  I do not want those inspirational quote crap sayings that are hung in doctors offices and posted all over feel good websites.  BLECH.  I want real tangible hope.  I want to know how deep this hole goes.  I want to know what am I grappling with and how can I help save my son.  How can I even set up temporary camp in the hole if we are still falling? How do I relax into the fall and find grace? I am not sure I am actually ready to adjust to this new reality.

The Medication Situation

Many people ask if my son is on medication. and the short answer is yes. We have had a long and twisted road with medication for Lexi.  It is a sensitive subject of sorts because he has reacted so negatively to meds in the past.

When Lexi was first diagnosed with autistic spectrum disorder we put him on a very small dose of Zoloft.  This medication made my son absolutely manic. He stopped sleeping and would stand in the middle of rooms laughing like crazy and just pee on himself and laugh some more.  Although my son was intense with autism, these symptoms had not occurred prior to this medication.  Sadly, my son has never slept well since.  Some experts suggest that those prone to bipolar can be triggered by either Zoloft or Prozac.  I am not sure if this occurred but I will tell you whole heartedly that my son has never been the same since.

A few years later we tried Risperdal. Risperdal is an anti psychotic medication. After finally getting in to see the UC Davis MIND Institute the doctor felt that medication might help Lexi with his rage issues and would support him as he grew stronger.  I went for a second opinion to the experts at Stanford Children's Hospital.  They agreed and we began a low dose of Respirdal.  Lexi's rage issues went away and he was able to go into public places without meltdowns and anxiety attacks. It was fantastic.  I remember going to an amusement pizza place in our local area where once I dragged him out screaming like he was on fire because it was so loud and chaotic and on the Respirdal he was playing, smiling and laughing with his sister.  It was SO wonderful to see him enjoy himself and be a part of the world.  Within 6 weeks on the Risperdal, Lexi had gained 24 pounds.  His liver test showed the medication was harming his liver and beginning to start the early signs of diabetes.  We weaned him off of the medication.   Lexi has never lost that weight and he still borders pre-diabetic physical conditions today, that was six years ago.  Once again, my son has never been the same.

Next we tried Abilify.  Similar to Risperdal, this medication is in the anti psychotic family but is not supposed to cause the pre-diabetic situation and weight gain.  After only two weeks on this medication my son began to facially tick.  He had already sort of had some physical ticks and obsessive behaviors due to the autism but these ticks were different.  He would snap into these facial contortions and his limbs would jerk and twitch.  Even when he slept, his body would twitch.  Apparently, this is a side effect of Abilify for some people.  We quickly weaned my son off of this medication.  It took about four years for the twitching to fade. He now ticks in ways that are less noticeable.  He pops knuckles and twitches his knee or feet or hands. Again, my son has never been the same.

Since my son's diagnosis ten plus years ago I have also sought out every alternative method of healing I could find. He has seen osteopaths, homeopaths, naturopaths, curative eurythmists, spiritual healers and more.  We have given vitamins, herbs, oils. He has listened to tones, music, been massaged and held and prayed over. I can not go into the myriad of straws that I have grasped at in order to help balance and unlock my son.  Some I saw small results, some I saw no results. I do not regret trying it all.  Perhaps some of these alternatives have kept my son out of the horrible state that doctors advised me he would end up.  He is very highly verbal, can make eye contact, has learned how to tell a joke and more that I was told a kid on the spectrum could never be expected to do. None of these alternatives were able to help with the mental illness, however.  I will correct myself by saying, none of these alternatives have shown any noticeable difference in saving my son from the torturous spiral of mental illness that he has been on for the last 15 months.

Since March, my son has tried the ADD medicine Stratera, for sleep he was put on trazadone, chonadine and attivan all at different levels and combinations. Finally, with the correct diagnosis he was put on Lamictal and Geodon to help control the mood imbalance and the violent rages.  The geodon immediately caused him to shake and have painful hiccups. One missed pill and he was attempting suicide so we decided not to take him off of it even though all warnings say to stop immediately if shaking as a side effect occurs.  The Lamictal is a powerful newer medication for bipolar that has little side effects but the one to watch for is a deadly rash.  One must go on the medication very slowly or the rash can occur and for some it may never go away.  With amazement, no rash occured and he is now finally up to a therapeutic dose.

The Lamictal and Geodon were not quite doing the trick for Lexi.  While they helped SOME, they still did not stop the suicide attempts, the parasuicidal behavior, the deep depression and spikes of energy. More concerning was the hallucinations that came before medications started and seemed to come more frequently and more intensely.  None of the previous meds were able to address the depth of challenge my son was facing.  My poor son was terrified, exhausted and feeling more and more hopeless every day.  This last time to the psychiatrist, she upgraded the bipolar diagnosis and added a new medication.

The new medication is one that has not been tested on children or teens.  It is brand spanking new and kind of hard core.  It is supposed to be low on side effects.  He started this medication a week ago and after 24 hours he began seeing relief.  It took a few days to get to some serious relief but so far, he is seeing relief from some of the intensities.  His hallucinations have almost completely gone and the ones that remain are mostly harmless. His depression seems to have lifted and his suicidal tendencies and self harm are completely gone.  We have had four days of almost normalcy.  Now I qualify that by saying all of the autism symptoms are still there but the gripping darkness and instability have melted to minimal at best.  He is sleeping more at night then he has in years. He smiles and laughs and has hope again. He ASKED to go to church today and even was able to sit through the sermon.

I am not sure what this medication does completely and how it works as far as whether or not the initial impact is long lasting but I am grateful for the improvements.  Like Lexi, I am beginning to have hope again.  He is currently on Fanapt, Lamictal and Geodon with the hopes of slowly weaning him off of the Geodon due to the negative side effects.  The prognosis is still bleak and the severity of his illness is still grave. Life is fragile. Yes, he is medicated. Yes, I have tried alternative methods.  Yes today was a good day. Yes, I hold out for hope.

Stigma!!!!

Stigma. Defined, it is  a mark of disgrace associated with a particular circumstance, quality, or person. 

Whenever I write or read that word i hear it in my head as if Dr. Evil is saying it from the Austin Powers movies. "STIG-MA" and I so want to slowly place my pinky to the side of my chin and raise an eyebrow.  It just holds that much power.  It should be given that much latitude.  STIG-MAH!

I know from parenting a child with autism for 10 years that the public at large and in generalizations are fraught with opinions and ignorance.  I myself an guilty of an ignorant mind and heaven knows that I am just full of self importance and opinions. I have opinions about so much sometimes I have to put my hand over my mouth to keep them from coming out. I guess my experience me enough to learn to put my hand over my mouth and shut up.

On the autism part, when people hear that my son has a form of autism they assume he is developmentally delayed to the point that you are supposed to speak to him like he is an infant.  Nothing ticks off a brilliant aspie more than saying, "HEEEEY BUDDY!"" to him.  Ok, I stand correct, it ticks him off even more if you try to put your hand on his head and muss it up.  Oh boy...people have almost been hurt.  Anyway...back to topic...I don't know why people assume that when MOST people with autism of any level on the spectrum do not want to be spoken to like they are 1 year olds.  I'm not even sure 1 year old babies want to be spoken to in such a way.  Really!  What is the matter with people.  I never spoke to my kids like they were kids...I spoke to them like they were PEOPLE!!!!

The other side of that ignorance about autism is the multitude of people, some strangers-some NOT, who say things like, "he looks totally fine to me".  Now I have had some folks who say this in a supportive way, like they are trying to tell me that because he doesn't look autistic they are of the mind that he will be just fine in the world.  Then there are the folks who say it in a way as if they are questioning his diagnosis.  He seemed fine to me, he was playing with the other kids and laughing and I saw no signs of autism at all.  And to that, what should I respond..."Oh my gosh...he's cured!!!!"  or "Oh my gosh, the doctors must all be wrong for years and years and you are so much wiser than anybody else".  There are comments that fall in between these two versions but these two themes continue to pop up on a regular basis.  My reply to them is always, "I know."  I just got tired of explaining it and educating those who don't really seem to want to learn.  I'm not saying that they don't care, intentions are always positive but not always thought through to the level of compassion.

As we have recently entered the world of mental illness diagnosis I am learning a whole new level of stigma...did you hear Doctor Evil in your head..."STIG-MAH!".  I know there are a lot of things called mental illness these days but lets take the clinical diagnosis serious, shell we?  As I am researching my son's new, upgraded diagnosis which is a more severe form of bipolar with some other serious mental illness thrown in like a tossed salad of crazy, I am reading blogs and watching vlogs of folks who live with these different diagnosis.  I am stunned and heart broken to report that without exception, in every single account from one of these folks with these serious forms of mental illness they all say that they are tired of people telling them to just "cheer up" or "get over it".  I was reading a chat room where someone posted a question regarding general facts and statistics and some ignoranus decided to offer their advice again saying to "move on and chin up".  I wanted to reach through the computer and punch the person who wrote that.

Just who do we think we are anyway?  How can we tell someone to get over or chin up through something that we can not even fathom??? Just because we don't see bleeding or bruising does not mean that there is not legitimate pain!  Believe me, I am watching my son struggle with legitimate pain every day right now.  He feels isolated, alone, terrified of the demons inside of him, anxiety over whether or not he will have the strength to manage himself next time the mania comes or the depression kicks in.  He does not know how to relate to his peers, how to talk to them, how to tell jokes with them.  He is not sure if someone is mocking him or being genuine and to protect himself has taken the stand that it is best not to engage instead of find out later that you were only being made fun of in front of others as people pretended to be your friend. Can you imagine not understanding those social nuances, the secret code of socially appropriate behavior?  Can you imagine feeling fine one second and the next being sure that the world would be a better place without you? Feeling excited and hopeful for a while and then thinking it is just too exhausting to keep going on, to keep trying.  Your brain chemistry betrays you and either it is creating too much happiness or has created a chemical drought of happiness that causes you confusion and pain all over.

Not everyone's mania looks the same.  Not everyone's depression looks the same. Just like autism, no two people with the same diagnosis look the same but there are similarities that are shared but not identical.  In fact, I find that there are no two mania episodes that look the same although there are key identifying factors.  Distraction is the key to moving forward. Distract from the mania and distract from the depression.  Keep carrots in front of the cart, keep physically moving.  Obstacles, stress and boredom are playgrounds for the mind to go awry.

With all good intentions, some close to us feel this is too much work for me as a mother. A single mother with no real family nearby, handling all of this alone, it is too hard and invasive to my life.  Some worry for the safety of us all with such irrational thinking, exhaustion and intense episodes.  For some, it is just too hard to understand at all and they pull away.  I heard one girl on her vlog say those who did not run for the hills when she was diagnosed came back with torches and pitch forks.  How heart breaking that this is her perspective and I wish I could say that I did not understand.

We do not need to run for the hills.  We do not need to protect ourselves with pitchforks and torches.  Mental illness is scary, frightening, exhausting and completely overwhelming.  Autism is sometimes loud, ugly, violent and isolating.  Both are equivalent to getting hit by a truck but getting hit by a truck offers the hope of healing and instead of people running away, they run to the victim to help them.

I have had family and friends say that they do not know how to help me...prayers are sent, good thoughts are surrounding us but some days it does not feel like enough.  Some family and friends have already packed and ran for the hills.  What we need now is support. I need the torches to light the way to compassion, open hearts and strength.  I need the pitchforks to scare away the demons that haunt us and the isolation.  We need to feel the support of those around us now more than ever.  People to come and hang out with my son, my daughter, myself.  Someone come and take them to a park, or a hike or to a movie.  What if someone offered to take them to their classes while I arrange the IEP's or call the Crisis Team.

Where are the casseroles we would bring the victim of the head on truck accident?  Where is someone to just hold our hands because WE are scared and confused and exhausted?  But this is not cancer, or a truck accident or something that others can see...this is mental illness and autism.  This is a perfect storm in the brain.  This has involved suicide attempts and deep darkness that can consume the light and hide it away.  This is scary and can touch us all.  We have all smelled or tasted that darkness at one point either in ourselves or someone we love.  It may not be understood because we all fear it in ourselves.  It is insidious and confusing.  Isn't it easier to stigmatize it then to face it?