Genetics

Well, it has been awhile.  We have had ups and downs with Lex.  Who knew that a simple concussion could bring back some of the severe symptoms of mental illness.  Apparently any injury or "insult' to the brain makes the brain revert back into the old grooves.  That sucked and made us all nervous for awhile.  One of our hopes, as soon as I can afford it, is to get a "partial conservation" on Lex so that if he has another severe break I can protect his interests, medically intervene on his behalf, take care of his dog and his car, pay his bills, etc.  Well, a partial conservation costs several thousands of dollars and I just don't have that yet.  Thank goodness he has stabilized out again *knock wood* and is doing well.  No really, he is doing well.

Lex is going to school full time through a Department of Rehab program learning to be a Master Auto Tech.  He loves college so much he has re-energized his life long passion to become an automotive engineer.  He wants to continue in college and get a degree in mechanical engineering.  This was not though possible years ago do the the damage to his brain from his mental illness.  I know he world is a fragile place for him but right now, things look very positive.  As any special needs family or family of the mentally ill knows, you never breathe out and let your hopes rise too far.  We are always ready for what might happen.  In that life lesson, I have also learned that whatever comes next always comes from a direction you would never have expected.  Hence, genetics.

Yep, now it is his sisters turn.  No, not the same but anxiety that is crippling her.  I am watching my other child, the one I called in jest my 'redeeming child' become almost non functional with anxiety disorder.  The anxiety is not new.  She has always had it.  What is new is the irrational thoughts coming from this painful problem.  My twinkle star, my beautiful girl is tortured by her thoughts.  This is one I personally struggle with.  I am not a fear based thinker.  When I get scared, I come out punching with a "oh hell no" attitude.  I have always been extremely independent, maybe stupidly courageous kind of person.  I did what had to be done when it had to be done and if I was scared I was able to compartmentalize my fear and focus on the task at hand.  I have lived through physical attacks, tornadoes, hurricanes, rode my moped into a mud slide, earth quakes, driven all over the country, travelled abroad and more and fear was not an option.  I don't know how to parent this level of anxiety.  I don't know where to be tough and where to be tender.  I just don't understand it at all.

Thank goodness I have some understanding from my association and work with NAMI.  Anxiety is a form of mental illness. It is not her fault.  It is not something she can control because if she could, she would.  Right?  I keep thinking that if I can get my life on track then my kids lives will improve, they will stabilize and feel confident and sure of themselves.  My life keeps being the target of a shit storm of weird financial instability, unemployment, etc.  All my effort to et that part under control is only so effective.  The rest of what my kids deal with is genetics.  Nature vs. Nurture, right?  I mean, it probably does not help, my anxious unemployed state of being but it probably isn't the whole problem either.

Genetics feels like blame.  As any divorced parent would love to say it is all the fault of the other parent we all know that is not helpful.  Personally, I get my bad stomach and cold feet from both parents.  I get my workaholism from both parents in positive and negative ways.  I get my blue eyes from my Dad.  I get my tiny lips from my Dad.  I get my wit from my Mom.  I get my dark and dry humor from my Mom.  I get my weight problem from my Dad and my chinless condition from my Mom.  It's the genetic card I was dealt.  My son probably gets his autistic spectrum from my genetics.  There are some mental instabilities in both sides of my kids families that their genetics can pull from and trigger.  I remember my ex mother in law taking valium for anxiety on an almost daily basis.  I certainly know my ex struggled with some serious issues.  I have cousins and aunts who struggled with some issues as well.  Let's just say, my girl comes by her anxiety naturally, but not from me directly.

I love my girl.  I want her well.  I want her to be strong like a warrior.  I want her to have healthy fear to not act stupid but healthy courage to be able to walk in the world and be okay.  I want my kids to be okay.  I just fucking want my kids to be okay.  I don't know what more I can do to make that happen on the nurture side.  Have I said lately that I hate mental illness?  I hate it like leukemia, like cancer, like any chronic fucking illness that limits and threatens the life of anyone but especially my children, my beautiful and amazing children!   Fucking genetics. Until medicine knows more, understand more, we are victims to genetic gamble.  Roll the dice when breeding happens because you never know what you might get.  Victim just ain't my thing.

2013 The Lesson of the Mustard Seed

Well, like everyone else, I find the last day of the year a perfect time to reflect and release.  What a year we have had as a family.So much has happened and we have hit new lows and found new highs.  I always thought that 13 was my good luck number because it is the day my son was born but this last years strains me to find good luck in it.

Lexi winning the silver medal in Special Olympics Golf

Last year at this time I was still unpacking boxes from our recent move back to our favorite town.  How grateful we were to find an academic program that suited my son and returned us to small town mountain life.  Little did we know at the time that we were headed into one of our biggest descents as a family.  As Winter progressed, so did my son's mental illness giving rise to many calls for help as Spring approached to all of his service providers.  Things were getting way beyond my ability to manage . By Mother's Day my son went in for his first psychiatric hospitalization only to have five more from then to Thanksgiving. The mental health system moves VERY slow and it took so long to see the psychiatrist and begin true assessments for a diagnosis.  In the meantime, symptoms continued to worsen and new ones popped in to play.  I would say that the very hardest part of the whole summer was the lack of understanding and shock.

As the diagnosis became clarified and medication was tweaked and tried and tweaked some more the shock wore off and the reality and grief process kicked in.  At one point my daughter burst in to tears alone with me and said she was afraid to leave the house ever day because she was never sure what she would come home to and if her brother would still be alive.  Every morning when I went to wake up my son my stomach would tighten as I would pray that the bipolar did not win and allow him a successful suicide attempt while I slept. I can write this out but nobody could ever really know the sick feeling in the gut that is constantly at play with an unstable child who is determined to kill himself unless you have lived it first hand. His thoughts were twisted and dark and the damage done by the psychotic breaks is significant and somewhat permanent.  In a way, not only will my son never be the same but neither will my daughter or I.

Lexi's scars-he wouldn't allow stitches-some of these bled for five days

As we have had a month and a half of stability (mostly) my son said it feels like so long ago that he was in so much pain and he is so glad to leave it behind in 2013.  My family has started to step, cautiously out of survival mode and in to a more healing place, looking to heal, rebuild, strengthen again.  I have enough information to know that stability is VERY fragile and with a bipolar autistic kid everything can change in a minute or less but I have also been taught to change my expectations and responses.

I leave behind in 2013 my hopes and expectations of my son as I used to know him and I treasure him as he is now, alive!, finding joy in music, painting, golf and his own personal brand of humor. My daughter feels safe enough to be irritated by him again and we are working on getting her ADD back under control.  I have begun to sleep a minimum of 5-6 hours a night and although I still have a tight stomach every  morning I wake up until I hear him answer my calls, I am digesting food better and getting sick a lot less.  We are trying to focus on our health and physical well being more as a family, engaging in different sports and activities, initially to counter the side effects of Lexi's medication, but also to help with brain clarity, mental balance, stress reduction and my visual impairment.

I have had many friends and family express concern for my daughter and I which is not easy to answer.  Yes, this has been hard on us all.  I am a single full time parent and a working Mom who is a part time law student and I have a degenerative visual impairment called Stargardt's which is made worse by stress.  It is truly one dimensional to consider that signing over my parental rights to the state and putting my son in a home would be better for my daughter and I.  I do not judge those who have had the strength to do this but I am not in that place and I hope to GOD I never will be.  I have researched my options and understand as many perspectives as I can possibly see from where I stand.  That is my son, my child, my daughter's brother and I believe he is mine in all of his disorders and mental illness and unique challenges for a reason.

I was reminded today that God does not ask us to have a mountain of faith but merely hold on to a mustard seed of faith...that small...and it will help get us through.  I have white knuckled my mustard seed and for that I am grateful that today is a good day.  I make no declarations of "I will never" or "I will always" because I have been humbled hard and think declarations are dangerous.  Taking care of my daughter and I, for now, is keeping my family together...our threesome.  We may lack grace at times but we NEVER lack love.

My family...traveling our journey!

I am not sure what 2014 will bring us and I have learned that making plans is a set up for disappointment so I will merely have loose hopes and goals and many prayers.  I told my son that if there is one thing I know that we can leave behind in 2013 is the shock.  We can be grateful for the medications and research being done on autism and mental illness and we can now walk with more understanding of what is happening and continue to look for different approaches on how to manage it all.  All three of us need to manage our family, my son in his mental illness, my daughter in her focus and anxieties and I in my grace, stability and strength.  I am grateful that through the vast amounts of sleepless nights, excruciatingly stressful months and the grief and pain that God has kept me strong and relatively healthy.  My eyes have not degenerated too much, my attitude can rebound and there has been no physical collapse. (knock wood)  !!!!

Is 2013 a bad luck year? I could see it from that perspective or I could see it as a year I was humbled and stripped down to find the truth in life, the mustard seed to hold on to, the grace in taking life one breath at a time.  Thank you 2013 for those lessons and I am so grateful to move pst them into more ease and joy.  May 2014 bring more smiles then tears and more digestion then sickness, more stability then shock and more hope then fear.  I begin towards the end of my law school career, beginning my fourth and final year in May and the acceleration toward the Bar Exam in 2015. I have the privilege of being on Law Review and exploring the perspective of a "legal scholar". I am blessed to watch my children grow and meet the challenges of adolescence one with ADD and the other now understood to have Autistic Spectrum Disorder AND Bipolar. I look forward to reaching our fundraising goals and receiving our autism service dog in the early summer months of this coming year and all the benefits related to that blessing. I am grateful to be honest and open in sharing my journey so that perhaps the shock and grief I have felt along the way could comfort or enlighten another to branch into acceptance.  Thank you 2013 and welcome 2014...let's see what you got!

An autism service dog trained by Pawsitive Service Dog Solutions

Let's Talk Turkey about the Holidays, Family and Gratitude.

So let's talk the real deal about the holidays.  I am taking this "Family to Family" class put on by "NAMI" the National Alliance on Mental Illness and the class is made up of over 20 people who have loved ones with some form of diagnosed or undiagnosed mental illness.  We broke up into groups a couple of weeks ago based on our relationship to a mentally ill loved one.  The group of parents had about six people in it.  We ranged from the 70's down tot he 30's in age and consequently had children ranging from teens to 40's in age.  We were asked several questions but one of them was "How does having a loved one with mental illness affect your family?" and what surprised me was the over all consensus of the group that it has torn the family apart. Half of the parents spend holidays completely alone because they can not have their mentally ill child with the rest of their family.  Many siblings of the mentally ill will not visit the parents if they are care taking for their mentally ill loved one because it is just too hard to be around.  What a realization of overall sadness we had for a moment.

It almost feels like somewhere we make a choice, to love our mentally ill family member at the cost of the other family and friends.  Whether that is an outsider's reality or not, it seems to be the way it feels to the parent.  Myself, I have one family member, from a distance without actually asking details, who has chosen her fear over what she has perceived my sons mental illness to be over her love for him and will not be around us anymore.  Another family member I have wiped my hands of due to my disappointment and frustration in the lack of care, thought or empathy. I do not have time to make others okay with their  self centered ideology. My own best friend has become distant to me and my family because she can not understand.  Other close and dear friends have stopped calling or emailing or visiting because it is just too hard, our lives are too intense and the ups and downs are more treacherous then the roller coaster rides at the local amusement park. "Please keep your hands and arms inside the crazy for your own protection".

The truth is that unless you are in it, day to day, moment to moment, it can not be understood.  It was sort of that way with autism for so many years.  Nobody could believe the crazy that goes on with autism.  The rage tantrums, the weird stemming, the social awkwardness and blunt statements that offend people you care about. Yes, there were countless times I had to tell my son it was not okay to tell people that their perfume "stinks" etc.  The autism and it's own brand of ugly grew a level of acceptance among my family and friends though and admittedly, it wasn't for the weak at heart, but it was not shameful.  Mental illness is much scarier and holds more shame and gets upgraded to f'ugly.

The crazy mania leads to impulsivity that is just weird and sometimes dangerous.  The darkness that over takes a person with serious bipolar is deafening.  It sucks away all light around it.  The fact that these extremes can be sudden and unforeseeable are uncomfortable, scary and exhausting.  Then there is the delusional thinking.  I think we have all had this form of thinking in one way or another either through our own typical acute depressions or our elation during certain moments of celebration or even the crazy thoughts that can come from sleep deprivation.  The thoughts are not right, out of whack with reality.  Nobody knows how to handle this situation.

What if your loved one hallucinates, hears voices, sees demons or people or objects? Can you imagine the discomfort around family when all of a sudden the loved one yells out, "Whoa...what in the heck was that?!?!" and nobody else saw anything or heard anything and everybody is looking around. Or if your crazy loved one is aware enough to know that delusions and hallucinations are embarrassing and would scare away those she loved or might scare people.  Sometimes, the hallucinations or voices are so scary to the mentally ill that they are afraid to talk about them to anyone, they can even come with a level of paranoia or fear of punishment if others might be told. Let's try bringing all this to Thanks Giving shall we?

But as the parent, we see it, feel it, hear it...maybe not directly but on their faces, in our discussions, as we try to lift them from their darkness or tether them during their mania.  We help them battle their demons and quiet the voices.  It is my child who has mental illness and it is my commitment to him that I will love him and care for him through his darkness, his delusions and no matter what his voices might tell him.  It is my heart ache that so few can help me love him through it too.

I have described mental illness as if it is a cancer of the thoughts.  Medications can be like chemotherapy and bring recovery but it can be an intensive toxic process.  Sometimes one ravaged with cancer may end up with physical deformities or the chemo therapy may change them somehow, even hair growing back a different color or texture.  When someone has cancer, people offer to help...they bring casseroles, and give rides to doctors appointments or come and sit with the ill and comfort them, read to them, pray with them.  Nobody brings casseroles to autism flare ups or psychotic breaks.  Nobody offers to give rides or come pray with the family.  Other family members get anxious about their visits and worried if they have reached out at all or even invited the crazy to join.  It isn't that I don't understand and even appreciate other's discomfort, fear, concerns.  It just makes me sad.

I remember once someone was telling me a story of someone they knew who had an autistic child.  They brought that child to church and the child had a neurological storm in church and began screaming and needed to be restrained and brought out of church.  This person told me that it was just wrong of that family to have come to church and bothered everyone with that poor child.  "How could they be so thoughtless to the rest of the congregation?".  Oh how I would love to bring my son to HER church NOW!!!  *a moment of self amusement as I consider the possibilities*

I am sad to know that at least 3 people who sat at my parent table in the NAMI class will be spending Thanksgiving alone.  I am sad to know that those who are surrounded by darkness and demons and fear need more then ever to have their loved ones simply surround them with light and love and brave the intensity enough to be physically close and spend time with them, talk to them, share with them a space and time.  That those of us who care for our loved ones feel separated, isolated by our love for crazy.

I know that my son is beautiful, autistic, crazy and intense and I am grateful that most of  the time, if I take the time, I can find him through his thought cancer and his neurological storms and his darkness and I will never stop loving him.  I will show it in any way I can.  That is what family does for one another.  That is what a mother does.  That is what I do and who I am.  No matter what kind of a day he is having on Thanksgiving this year, I will be with him. If we can muster up the strength, the neurological storms are calm enough and the thought cancer has not ravaged him too much that day, we will try to be with some of our extended family.  And we will be grateful.

A NOTE: I am no longer tolerant of statements like "do you think he is making all of this up for attention".  I have seen my son cowering in corners from his thoughts in his head.  I have seen my son bleed for five days due to his efforts to try to release the pain he feels inside.  I have taken him to several doctors and specialists who know WAY more then me and swear that his mental illness is real and intense and significant.  In the same way that others did not see the tantrums of autism and feel the pain of restraining him when he was younger as he screamed through his neurological storms, his autism was and is real and his mental illness is just as real if not more devastating.  Because you do not see it and experience it does not give you the right to doubt it.  You do not need to understand it to accept it without question, you just need to have trust and faith in our process and journey. Please do not express this level of ignorance to those you meet with mental illness. It is demeaning and minimizes their reality and struggles.

A SECOND NOTE:  For the statement, "I don't know what to do or how to help" prayer is wonderful, a card of thoughtfulness, an email, etc can bring light on a dark day for my son, myself and my daughter.  Come visit and hang out, play a game, take a kid to a movie, bring a casserole, a cup of coffee or tea, a hug.  Showing you care is priceless and invaluable.  If you have a loved one with ANY form of illness, physical, mental, neurological please show you care.  All of those who have donated to my son's fundraiser for his autism service dog have brought light and hope...it has been a wonderful way to show you care.  I mean it when I say that no donation is too small because it ALL means that someone cares and to us that care is HUGE!!!!  Thank you for all who care in whatever way you are able, prayer, donations, reaching out, coming over and helping our family, offering rides, offering hugs and so on.  THANK YOU!

...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.

raw honest ugly truth of why autism and bipolar are a suck mix.

I have been debating whether or not to post about this and probably one should always er on the side of less ism ore but I tend to be the kind of person who wears my heart on my sleeve and I believe that honesty and raw truth can maybe offer others strength.  So here is a real, raw post.

This is where autism mixed with bipolar has become a deadly mix for my son.  As some may know, my son has been diagnosed many years ago on the autistic spectrum and recently has had bipolar I added to his tossed salad of brain disorders.  His social awkwardness in adolescence mixed with the sudden mood changes, the inability for his brain to process the happy chemicals and then produce WAY too much at any given moment has put him in the psych hospital 4x's in the last six months. Sometimes he feels it just all is too hard for him to handle and he gets exhausted and confused and doesn't want to go on trying.  Sometimes he feels like he is just too much of a burden.  His reasons vary and his black and white thinking is intelligent and analytical but potentially fatal.

This weekend it happened again. For whatever reason his mood went somewhat dark.  On a butt load of medication to control all of this, we have been able to bring our knives out of hiding based upon his promise to not try to kill himself or cut himself anymore.  Friday night, he kept his promise and in them middle of the night when the anxiety and depression was beginning to swallow him he came and got me and I was able to distract him and get his mind on other things.  Saturday night he did not keep his promise.

I was up in my bed, unable to sleep in the wee hours of the morning and I heard him get up.  I stayed quiet, waiting to see if he was just getting water or if he was going to need me.  I heard him go to the kitchen but did not hear water running, the refrigerator open nor did he come to get me.  I got suspicious that he was either sleep walking, sneaking food or something innocent and easy to deal with.  I quietly walked in to the kitchen to find him cutting his arms.  In order to not shock him I quietly whispered requesting him to stop.  He was so surprised I was up.  I looked at his bleeding arms, he was cutting over his multiple scars and several knives were laying on the counter.  I have learned to NOT get upset and to stay calm and steady.  He was in so much darkness that this was his alternative.  I asked him why he was doing this.  He tried to evade my question, apologize, etc.  His biggest fear is being taken back to the psych hospital so he was trying to tell me whatever I wanted to hear to avoid the ER.

Finally my son stopped lying and evading and told me that he was trying to find a knife sharp enough to go back to his room lay down in his bed and slit his throat.  It was hard to breathe and I had to stay steady and non reactive.  I cleaned his arms gently and told him that this was a violation of our promise. He could not remember making that promise. I asked him how he thought I would feel if I found my dead son in his bed. He said he had not thought of that.  I asked him how I would be able to go on living if he had done this to himself. He said he had not thought of that.  I asked him why he thought this was a choice he wanted to make and he said, "because I can't be good at anything like other people."  My son thought that he had to make a choice now, in adolescence what he was going to be successful at, like other kids do and that everybody selected their careers right now and what he would be good at.  He gave up on college because the medication is causing memory problems and he feels stupid now.  He wanted to be a film director but he is not sure he can be good enough at that so then he felt worthless.

I told him that he did not need to decide what he was going to do for a career right now.  He only needed to live to make many choices and try many careers.  He looked at me like I had three heads.  I asked if he knew that, that he did not need to decide right now and that he could change his mine several times in his life.  He looked so innocently stunned and amazed and answered, "no, I did not know that."  He sighed with relief.  He sort of chuckled and said, "Oh my God, Mom.  Thank yo.  I did not know that.  I feel so relieved."

My son could have died over a simple misunderstanding of life direction and autistic thinking mixed with screwed up brain chemistry.  He began to sob for awhile.  I couldn't tell if it was grief or relief but I didn't care.  He renewed his promise to me to not allow the darkness to kill him.  If he feels the darkness swallowing him he MUST come get me.  The problem is that I know that he can only keep that promise when he is in his right mind.  My son would NEVER hurt anyone else or anything else but when he gets out of his mind he hurts himself.  He turns his fears, confusion and anger on himself.  His brain can switch on him in an instant right now.  His medication is not holding him and he feels constantly betrayed by his brain and thoughts. He's not sure what's real or what is a trick of the mind or a side effect of the medication. He struggles so much to make it through every day.  I struggle with the fact that I can not watch him 24/7 and I never know when he is twisting things in his head. I can not protect him from his own brain.  I know he is so scared and confused and all I can do is hide the knives, sleep lightly or not at all and pray that I will keep catching him in his darkness, that he will let me in just enough to keep him going and that somehow he will stabilize and we can get a manageable level on his biochemistry.

I know there are folks who struggle with autistic spectrum disorders, bipolar, mental illness, depression and more. I am so proud of my son for letting me stop him, for making it through another day.  I pray that we can make it through today...with every breath.  This is my raw example of how bipolar and autism are a suck mix and why I don't sleep much and twitch a bit with distraction right now.  I hope it wasn't too hard to read if you made it through.

Screw Geometry

A year and a half ago I had a kid who wore suits, ties, bow ties, suspenders and instead of carrying a back pack he carried a brief case.  My son wanted to go to UC Davis and study automotive engineering.  He was weird and aspie like and socially awkward and sometimes explosive.  This has been my boy.  Since he was in early elementary school my son has been awkward, different and filled with high expectations of himself and wanting me to help him reach his goals and aspirations.

Over the last year this young man was swallowed whole by mental illness. His hair is long and unkept looking, he wears messy clothes, wrinkled, maybe clean, maybe not.  He wants to direct films but his aspiration to go to college is gone.  It is too overwhelming to think about going to college.He doesn't think he can manage himself enough to aspire to a whole lot anymore. He has lost confidence in himself and any self drive or motivation is gone.  He was failing his geometry class and I have been pushing him to stick it out and I brought it up to his therapist who said to remember all that my son works through in a day, do I really want to push him through geometry right now?

It's a conflict inside me, I have known my son to want so much for himself, to push himself and when the mental illness kicked in it ate this part of him.  I don't know what my role is as mother...do I let the old child, the one I have fought for, helped, listened to his dreams, go.  Do I allow this new, unmotivated, messy, uninspired kid destroy some of my son's potential?  Is it the same kid?  If he had cancer, would I give up on his pre-cancer dreams for him or would I hold them aside until he got better and then help him get back on track?  How do I let go of who I knew my son to be and what I KNEW his goals and dreams were?

On the other hand, is it really worth it? Is geometry REALLY that important right now?  This kid is struggling with instantaneous mood swings-hard.  He is battling delusional thoughts and mild hallucinations.  He is socially awkward and the most horrible time in life to be socially awkward-adolescence.  He is trying to find reason to simply keep breathing right now. Who the hell cares about geometry right?  I mean, if he can get through this alive, can't he take geometry later?  If I am going back to law school in my mid 40's, can't he go to college later if he decides to do that?

The real fear here is that I am in the land of "I don't know".  I don't know how this will turn out, if my old son will return, even in part.  I don't know if he will be okay or if it will continue to get worse and the mental illness will eat more of my son.  I don't know how to reassure him or ease his fear of what is happening.  I don't know how to guide or parent him through his anger and confusion. I don't know how to help or how to stop it.  I don't know what to let go of, what to hold on to and what to fight for.  I don't know that he will make it through each day.  I don't know how to breathe without feeling so many different emotions crushing on my heart.  I don't know where to look for hope.  Screw geometry.  Just give me hope.

Sometimes Bipolar is funny!?

I have a tendency to find humor for safety.  I feel it is much easier to laugh at things then lament over them.  don't get me wrong, as I have stated in these blogs, my face leaks and I feel sadness, anger, grief, etc.  One of the tools I use to keep me going is simply to look at the situation and find the humor.

So there are the moments when my son is manic but does not recognize the mania before it becomes too intense that make me chuckle.  Bless his heart, he can sit there rocking back and forth in a chair saying over and over and over again, "I'm so happy, I'm just so happy...ha ha ha...I'm so happy" and when you ask him, "Do you think you might be TOO happy, son?" He says, "NO! How can you be too happy!!!"

Well, these moments come a couple of times a week and it is important to remember that the person with mental illness does not know when their crazy is showing, kind of like the person unaware of the toilet paper on their shoe or that woman who tucked the back of her dress into her panty hose.  It's funny and still a little bit sad but you just can't help but laugh.  One night while I was in law school, he decided to play hide and seek...but he didn't tell anyone.  Okay, seriously...that's funny!  Finally, after realizing it was too quiet in my house, I came out and asked the respite worker, "Where's Lexi?" and she looked around and said she wasn't sure.  Shortly thereafter, not getting anyone to hunt him down, he decided to storm our house. Yep, the neighbors loved that one.  Again I tried to ask, "do you think maybe this might be a bit manic, honey?" and I got a resounding"NO! I"M JUST  REALLY REALLY HAPPY!!!"

He has found a friend at church, older then him, who also has bipolar and he loves to go hang out with him and talk to him.  I never fail to crack myself up by asking if he and his friend are planning to talk about their ups and downs.  It's just too easy.  Sometimes when he comes home from school I use the same joke, "How was your day honey?"  he will reply, "I don't know, okay I guess." and I have to throw back, "up and down?".  Really, it's all for self amusement! Sometimes he catches it but most of the time he doesn't.

The easiest humor is in the hallucinations. Yep, he has gotten so delusional he hallucinates.  Now, when he has the hallucinations, they are not funny BUT this does not stop me from making light of them AFTER.  Seriously, hallucinating is scary and embarrassing stuff so I like to diminish the power of it's fear by finding humor.  At one point he was hearing whispering, it wasn't clear, couldn't make out what it was saying, just whispers.  So for this one, my daughter and i have decided we want to get a really good sound system in the house where we could whisper in to speakers around him wherever he goes things like, "beeeee niiicccceee to your moooottthhhherrr...cllleeeeaaaannn your ssssiiiiissstteeerrsss rooooommm" and see what will happen.

One day he also hallucinated a red basketball.  A really benign hallucination but he was sure it was there.  Hard to explain how these things happen but trust me, it happened.  So, we have since looked for the basketball and have not yet found it in our plain of reality.  I laugh and tell him if he ever is really messing with my head, I'm going to go buy a bunch of red basketballs and hide them all over the place, in his bed, in his seat in the car, at the diner table, etc.  I still might actually get him a red basketball for Christmas.  He totally laughs at this I promise you.  The red basketball became a very analytical moment in our discussion of hallucinations and how the brain works but because it is so harmless, I so want to play with it to help diminish his fear about his hallucinations.  Don't you think it would be funny to get a red basketball for Christmas?  I do.

I have been dealing with the funny of autism for years and have so much material on "sometimes autism is funny".  I got tired of people thinking autism is a tragedy.  It is not.  It is just who they are and if we treat them like they are a tragedy then they won't learn to accept themselves in any other way.  It really is funny when my daughter and I went to the grocery store and he started to flip out so I would escort, carry etc him to the car and close the doors and lock him in until he calmed down.  He was safe but couldn't open the doors without setting off the car alarm so he would tantrum in the car wildly like the tasmanian devil.  The car would rock and there was faint screaming heard and my daughter and I would sit on the curb watching him, waiting patiently for him to calm down, chit chatting.  Sometimes the tasmanian devil would come out while we were driving.  On our way somewhere and all seatbelted in and safe, he would just start screaming, and hitting the car door, the seat and fighting his seat belt because something irritated him, the sunlight, the seatbelt, the smell of the car, the sound of a motorcycle, etc.  My girl and I just ignored it, she quietly whispers sons to herself and I calmly sit like it isn't happening and listen to my NPR.  I always giggle a little and wonder what the folks staring at us might be thinking.  Ha.

The point is, it isn't all tragic.  parts of bipolar, autism tourettes suck BIG but parts are funny and we need to honor that.  I can't hug my son, our bodies can not touch, he flinches at the human touch like I am poison to him...doesn't feel good as a Mom but is it fun to tell him if he doesn't clean his room he has to hug me...yep.  Let's laugh a little, lets use the humor.  It helps others feel more comfortable and it helps US feel more comfortable.  I hate bipolar and I hate autism some days but at the same time they have expanded my heart and soul.  More importantly, they give me great comedic material.  How boring would life be with those dang "normal" kids.  Man, we'd HAVE to watch t.v.  as it stands now, we are self entertaining.  :)

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!

Mom, am I crazy?

So my son asked me the other day, "Mom, am I crazy?"  He was not joking and stood right in front of me, looking me dead in the eye wanting my reassurance.  "Crazy".  Seems like a harsh word.  It took me back.

Feeling un prepared for such a question, I tried to laugh it off with a Big Bang Theory joke, "you can tell people you ARE crazy, your mother had you tested". He did not laugh.

He said, "All of this new stuff on mental illness you are doing, I'm not mentally ill am I?" My stomach tightened.  How do I explain this to him?  What do I say that he can hear?

Part of me wanted to just laugh and shout out, are you kidding me...do you think any of this is SANE??? I was pretty sure he would not laugh with me nor would he see my perspective on this.

I put my hand on his shoulder, which violates his no touching rule but in so doing showed him how important my statement would be.  I needed to touch him for me, in order to feel my connection to him and to show him that I would not let him be alone in this new reality I was about to dish out for him. I looked him in the eye and said, "Yes, son, you have mental illness. You have a very serious form of mental illness."

I explained that there are many forms of mental illness such as depression or panic attacks and that some are acute and can be easily managed even cured but that his form of mental illness is not easily managed nor cured.  I kept my hand on his shoulder and I said to him that we have learned to understand his autism and we can learn to understand his mental illness too.  I reassured him that he is an amazing young man and is not defined by his autism anymore then he will be defined by his mental illness but he will always need to be aware of both and manage his challenges with good choices, a doctors help and support around him.

He said, "Oh. I didn't know."  He searched my face deeper and asked, " Does this mean I'm insane?  Am I crazy?"

I don't know how to deal with those words because they don't describe a person to me but they describe actions. I told him that there are times when he is manic or suicidal that I would call his behavior crazy. I also told him that his 13 year old sister can be crazy sometimes and I can get really crazy in my head so I don't know if the word can stick to him any stronger then it can stick to anyone else.

I dropped my arm, releasing him and told him that I was so sorry that he seems to have come into this world with a body more sensitive then most, with more intense challenges then so many.  He agreed.  I told him that this is just the way he was made and it is up to him how he deals with it but that he is a brilliant young man with great potential and when he learns to manage his autism and mental illness himself he will be unstoppable.

My stomach untwisted a little when I saw him breathe out a little and the tension in his face and eyes relaxed a little.  I don't want to lie to him, ever.  He is so intelligent and we have always been so honest and respectful of one another.

I never thought parenting would involve moments such as this or should I say I always hoped that parenting would never involve moments such as this, but here it was, a defining moment for my son.  I, as his mother, the one person he trusts more then anyone else had to walk him gently into this new reality.  I was not allowed to feel for myself at that moment, I was not allowed to escape or defer to someone else.  I had to help him understand his obstacles and empower him to make a choice how to handle the truth.  As always, he impressed me with his strength and honesty and his ability to question directly and to the heart.

I still want him to learn to laugh at my Big Bang joke reference though.

Another Step Toward Hope...

So today I signed the contract for the autistic service dog with Pawsitive Service Dog Solutions.  Being a law student, I read it through carefully and had to call and ask questions. I am totally tainted on how to read contracts now and take nothing for granted.  We agreed to a minor change in the contract and I signed, dated, folded it up and sent it in the mail.  A contract acceptance is valid upon dispatch.  There it goes. Locked in.  Oh my....now I have to keep breathing.

Following the contract was an email on how to raise the money.  Oh boy...okay.  I used to be in fundraising, income development large and small.  Somehow it was easier to raise money for cancer research, a church and a school for special needs kids then for my kids service dog but it is do-able.  So much information to cover, so much to do.  Phone calls, letters, researching options.

WHAT?!?!  Am I crazy?  I am a full time Mom of two kids with special needs, I work and I am going to law school.  I am the mental health shuttle bus and the Mom taxi to teen land.  Now I am supposed to find time to write letters, plan and coordinate events, make calls, follow ups and manage a fundraising campaign.  This is totally insane.  I was having trouble breathing before all of this and just thinking of adding more makes oxygen very thin.

I gotta say though, it is kind of a nice stress.  It feels like I can do SOMETHING to help my son.  It gives us all an action towards hope.  It puts us out to our community in a vulnerable way but those who answer will answer with kindness and love. We have felt so isolated and alone in the autism and the bipolar issues that having folks respond to this need in any way, big or small, is HUGE to us.  Five dollars is a huge show of support because it means someone cares and wants my kid to not feel like the freak at least just a little, and a whole lot of littles make a whole lot of caring and a life changing, possibly even life saving difference.  It's risky, scary and a lot of work but I think it might be possible. I pray it is possible.  I hope. I like to have a way to channel my hope, channel my positive energy and give it a job.  I forgot in all of the darkness of late how much I like to hope.

A Ray of Hope!

Exciting News!!!!
Yesterday we got a phone call from our top organization on our wish list that they have accepted our application for my son to receive an autism service dog. WOOT!!! *happy dancing* So where did this begin?  It was suggested by his crisis team that a service dog would be of great assistance to Lexi because how much he connects with  animals.  We already have two family dogs and three cats.  In fact our cocker spaniel we found roaming the streets of a local town abandoned by his owners ran right up to my son and sat down by his side and basically adopted us..  One of our cats who has now passed from cancer chose my son at the animal rescue. The people who ran the rescue were fascinated and thought she was ferrel until she walked up and curled up in my son's lap.  Our cocker spaniel is 9 years old now and although he still thinks he is a puppy, he is not and our other dog is a silky terrier/guinea pig looking type gal I took in who has some serious health issues and will have a shorter life then a typical dog but I am determined to make it a happy and loved life.

So what benefit to getting a SERVICE dog when we already have pets?  Well, research shows that these animals that are raised and trained in specific ways change the lives of those they serve.  I think it has been on different news shows how certain dogs can be trained to smell cancer or low blood sugar or even seizures before they happen. Those dogs make me nervous, actually-I'm always afraid they will start sniffing me and indicate that they found something.  An autism service dog is somewhat similar.  These dogs are raised and trained to be way smarter then people at times, calm and steady.  They help distract their partner when they are anxious, depressed or doing repetitive motions such as "stemming" which is a typical autism behavior of rocking, pacing, flapping, etc that helps the person calm themselves.  They also help create a social bridge for their handlers. My son has huge social anxiety and becomes extremely overwhelmed in crowds and crowded public places. A dog can be trained to stand in a certain place to help their handler feel secure, lean on them to calm them and give a go between for the handler so people come up and talk to the dog and by proxy the autistic person becomes social.

My son also has terrible trouble sleeping at night.  This is typical for folks on the autistic spectrum. Throw in the Anxiety Disorder and the Bipolar and you have a recipe for disaster at night.  Service Dogs have been proven to help their handlers feel safer, calmer and less alone at night.  Some are even taught to lay on top of their handler and give a deep pressure sensation to calm them and help them fall asleep. It is the late night hours that I am most worried about and the hope that a dog would be able to assist my son and watch over him in some ways to help him feel safer, will be my biggest relief.  We are all exhausted from trying to navigate the wee hours of the morning anxiety and depression.  Would it be wrong to ask for a bull mastiff to just lay on top of him until he passes out every night?  Some dogs can be taught to help stabilize a runner, go after a kiddo who takes off and so on. It has also been shown that kiddos bolt less when they have a service dog.  The benefits to a specially trained service dog are countless and go way beyond these specific details.  If a dog can just help my son feel less alone in the world and hep create a bridge for him to step out and learn new social skills, become more independent and secure in himself then it would be an answer to prayer.

The suggestion for my son came out of the recent difficult year that we have had an his continuing anxieties, social awkwardness and depression.  It also came out of the fact that my son is 15 and wants to one day live on his own.  I believe that a service dog can help him transition into the world a bit easier. He can learn to take the dog with him to jobs and to school. Although it will be probably longer then average before my son might launch into the world if at all, a dog would allow him the extra strength to step forward.

So now we move to the next steps. The contract will be signed and a down payment given and then a plan to raise the money for the dog begins.  Yes, these dogs are costly to raise and train as you can well imagine.  Many of these organizations say that it costs approximately 30,000 to raise these canines.  Seriously, I almost had a coronary when I heard that number. Although there are many volunteers who give so graciously of their time to work with the animals, the cost is still high.  Being a service dog is a huge job and to be certified for full public access is no easy task.  HOURS upon HOURS upon HOURS are given.  This organization requires the families only to raise $12,500 and the rest is covered by donations to the organization directly.  The waiting list for our dog is 12-18 months so in that time we need to raise the $12,500.  Okay, I've done fundraising before...that is still a lot of bake sales!

This organization is our top pick because it is local to us and the training requires the families to go and stay for most places.  Here we would have no travel expenses. We can do follow up and visits with them after placement and if we have questions they are very accessible.  They do not mind cross over diagnosis such as my son has not only autism but bipolar as well and Tourettes.  Some organizations do not like folks with diagnosis OTEHR then autism.  I also like that they do not require you to raise ALL of the money and THEN the timeline begins and most awesomely, they assist you in raising the funds.  They have packages and someone to help guide and direct your fundraising and will support your by bringing dogs to events or help with articles in the news, etc.  There are some organizations that would offer a service dog but it can not be brought to school or it can not be kept with the family when it retires and so on.  I am so grateful that this place meets all of our needs and that we can go visit and meet the dog as it is being trained and my son can find hope in the process while we wait for placement.  My son needs hope and I think this dog will be a light for him to reach towards and once placed to help brighten his own light and path into the world.  I am so grateful.  The answer to our prayer has just begun.

Unclench

After my son's latest psych doc visit we have adjusted when he takes his meds and cut one medication dosage in half. This has shifted a few things for us. The meds tend to make Lexi drowsy and create more of a challenge to focusing so putting the Lion's share of them at night has created more energy for him during the day.  This is fantastic for focus at school. He is actually engaging more in his academics and feeling more hope about school.  It also means that at night he does actually get that drowsy sleepy feeling and has been going to sleep on his own somewhere between 10-12.  My son has not slept well since he was five. Since he went into high school it has gotten significantly worse winding up last year with a 7 week insomnia track that ended with a psych hospitalization. Honestly, for him to get 4-5 hours of sleep a night was miraculous. For the last three nights he is getting 8-10 hours of sleep.

Since the addition of the new med, Fanapt, his symptoms have diminished, the rages have stopped, the suicidal threats have disappeared and there has been no self harm and all hallucinations have basically left.  As I said in an earlier post, it seems as though the darkness that gripped him has let up.  The doctor said that the Fanapt not only addresses the hallucinations but it also addresses that clinical depression and suicidal side of his mental illness. The Lamictal is supposed to help level out his moods, which it has for a great part and the Geodon is a cousin to the Fanapt but wasn't really doing the trick and is the med we are cutting in half to see what role it actually plays in the cocktail anymore.  However, the new med does not address the mania.  Lamictal is not fantastic at stopping the mania either. So now I have a kid who has been getting some good sleep and is no longer drowsy during the day and instead paces and talks A LOT telling me all the things he is looking forward to.  The list includes holidays, gifts, money, jobs, cars, movies to make, foods he will eat, and so on and so on.  His stemming is beginning to drive me crazy, he walks around tapping a golf club on the floor every where he goes.  For the first time in a while he has some energy to burn and has forgotten ( like any good teen ) how to put that energy to good use and instead walks around bored and stemming and telling me about all that he "can't wait for...".

Don't get me wrong, I am grateful for the progress.  Improvements are improvements and I am so glad he is hopeful and has energy and is not using it to plot suicide. What I am noticing as I unclench during the day is that I have this overwhelming sense of exhaustion.  I am fatigued all the time now.  I suppose now that I can let go of some adrenal based responses my body is now finally feeling tired. Holy crap am I tired.  I have so much trouble focusing, even my vision is blurry.  I have been tired before, I did summer stock and turned shows over in 48 hours, I have pulled all nighters in college and law school. I have toured with an acoustic folk rock band. I have raised two kids up all night with screaming babies. Never have I felt this fatigued. It is quite a phenomenon for me.  I just want to lay in my bed and stare for hours, maybe even days.

Here's a riddle, why then can't I sleep.  As I lay here tonight, hearing my son snore loud and steady above my head in his own room, sleeping sound...why can I not pass out and sleep???  I lay here and my chest tightens, my muscles twitch and I feel like I can not get enough oxygen.  There are moments I wonder if I am having a heart attack. My mind won't stop. As exhausted as I am during the day, I can not sleep.  I still hear every sound and I stay aware of every movement.

For those who do not know I have a version of juvenile macular degeneration called Stargardts Disease. I am not blind from it but it is a visual impairment. One of the symptoms is that my eyes adjust to the change in light ten time slower then a typical eye.  When I turn out the lights at night everything is so pitch black for awhile I sometimes freak out and wonder if my vision will return and if my degenerated retina cells will receive the low level light rays bouncing around my home and through my window from the moon.  I sometimes have to force my eyes closed and stop looking for the light and breathe, relax and remember to have faith. Sure enough my eyes begin to respond to the low levels of light and I can see my surroundings ever so slightly again. I breathe easier and feel more grounded.

Where is my faith to help me sleep and function? I am not there yet. I am not adjusting yet.  When I go to try to workout, after about a half hour my face just starts to leak and I get embarrassed and stop.  Although i am taking alternative remedies to help my anxiety and acute low feelings about what is happening-because, ya know...this has kind of been a huge bummer-I still feel like I am unable to breathe most of the time.  Where is the wisdom to just shut my eyes and have faith?  Perhaps I need to do that now, close my eyes and remember to have faith.  Let myself adjust to the new levels of meds, adrenaline, low level mania constantly pacing and thumping around through my days and have faith that no matter what I can breathe.

In all honesty, I am just not there yet. I do not have faith that at any second I will not have to jump out of bed and figure out how to manage a life threatening crisis. I do not have faith that the meds are holding. I do not have faith that my heart won't break and I won't fall apart into a million pieces that can't be put back together. I do not have faith that my son won't fall apart into a million pieces that I can't put back together. How can I close my eyes when I am searching so so hard for the light, any light to ground myself and know where I am in the dark space around me?  This blog sounds whiny and disgusting but it is honestly how I feel.  In the dark, trying to breathe and unclench.  I was hoping writing about it would help me "get it out" of my head so I could sleep...not yet. Maybe if I clench my eyes closed like when someone is making a wish...when someone is wishing really really hard.

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?