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. 

My 2014 Resolve and New Years Resolution for 2015

Well, it is time to leave another year behind. In so many ways this has been a year I do not want to forget. I have learned a lot this year.  Top on my gratitude list for 2014 is that there was not one suicide attempt.  My prayer is that those are a thing of the past.  No mental hospitalizations and no 5150's.  The family has found new hope and support through a church community that the children chose and feel very accepted and committed to be apart. We have had ups and downs and all arounds with each kid  as the grow through adolescence.  Overall I am extremely proud of my kids as they have grown, chosen to  overcome obstacles by bravery, compassion and strength.

We now have Mickey, Lexi's service dog, with us and he is a spiritual appendage to my son that gives him strength he didn't know he had. Mickey makes all of us smile and when the intense storms blow through, Mickey intuitively hangs on and helps wherever he is able. He is a true member of our family.  Up there near the top of my gratitude list! My son smiles on a regular bases now...I didn't know his face worked that way! What a beautiful smile he has!

Both kids have been successful at public high school. This has not been without some great life lessons for each of them but the biggest lesson is to keep showing up and get the work done.  Isn't that a hard one for the grown ups as well.  Knowing their struggles, my heart bursts with pride watching them persevere.

I have been told by some that I am different now.  Taking stock on time and place I would have to agree.  I started law school in 2011 and my son was young, mental illness had not triggered, my daughter was finishing 5th grade. I had a different perspective on life and my part in it. Today, I understand more about how little I can control and how strong I really am. I also have learned that most people, well intended, have opinions that they know very little about. Most opinions turn into judgments and those judgments are isolating and stigmatizing. My bruises from this realization are healing but I no longer dance around the straight up.  Maya Angelo said that people will show you who they really are...believe them. I do.

I also have seen who I really am...believe me.  I am loving, compassionate and enduring. My loyalty is direct and steadfast but my tolerance for misinformation, ignorance, judgments and stigmatization is gone. Allowing those things to befuddle me only is a waste of time and energy of which I have little to spare. I am more direct now and to the point. Whether others understand or not I know that I have hit places of pain I could never have imagined and kept breathing. I white knuckle hope and prayer that very few could ever understand sometimes making it one minute at a time, one day at a time and hold outs for a productive and healthy future for my children. I could never ever explain that to anyone and, for the most part, have stopped trying.

Somehow the resolve in it all keeps me going. The questions have faded, the shock has faded, the search for a fix or a cure has faded and the acceptance of faith gets me out of bed in the morning, keeps me breathing and gives me strength to weather the storms, the good days and the future.

2015 holds challenges ahead. I will keep praying that my son's mental illness will not degenerate and I promise to feel kicked in the gut every time i notice or am directed to see it's worsening. I promise to celebrate every good joke, every accomplishment and kindness.  I promise to find success in every day because sometimes just surviving the day is worth celebrating. I promise to be fortified and strengthened in gratitude by the angels in our life who fortify us with their kindness, encouragement, faith and love. I promise to keep reaching for grace no matter how frequent I fall short.

Personally, graduating from law school feels surreal and mind blowing. I promise to celebrate it with shock and wonder at myself at the end of April.  I promise to cry an complain and stomp my feet as I train for the marathon of the bar exam. Self doubt and fear will be my enemy and I promise to scream loudly in their faces, even when they are in the mirror.  I promise to give everything I have inside to pass that bar exam in July. I know that I was called here, pulled here and that same source, calling, pull will drag me through victorious eventually.  I promise to be grateful for every prayer, positive thought, offer of forgiveness and patience and blessing that comes my way. I also promise to ignore anybody else's doubt, negative statements, fear and foe to my success.

Standing on the lessons of 2014 I move forward, stronger, ready to take on what may come, what storms may blow, what challenges lay ahead. I will be less social in my bar preparation, I will be more stressed, I will be a little uglier and my house will be a fright. My kids will be neglected and I will be less groomed then my mother would hope and the most I can say is I will try not to smell or offend but that might be the most of it.  Those who hang on to our friendship through my neglect and intensity of 2015 are saints and those who let go are practical.  I am grateful for it all and look forward to a year from now when I can put it all behind me and stand on the lessons of 2015 with grace and honor.  Hope to see you there.

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.

Damnit God, lay off my kid!

I am well aware that it is the time of year to be thankful.  I am thankful for so much and I tell God that every day.  I am thankful that it has been over a year since Lexi's last suicide attempt.  I am thankful that it is just a year ago today that I had picked Lexi up from his very last mental hospital stay.  I am grateful that over the last year we were able to raise enough money to get his service dog and that Mickey gives him a reason to live and is helping him make it through his day in ways I could never have foreseen.  I am grateful that Lexi is back at public school-I never was all that great of a home school teacher-Lexi said I was way too tough on him. LOL  I am grateful that Lexi, for the most part is making it through each day at public school through his ups and downs and anxieties and social autistic spectrum warfare.  I am grateful for the other stuff too, roof over head, food to eat, family who cares, work, awesome clients that have become friends if not family.  I can go on and on on my gratitude list. I am also grateful because I think God can handle me being ticked off.

I have heard since Lexi was diagnosed that adolescence is the toughest time for those with ASD.  Many people from lay people to experts warned me.  What they didn't know, nor could they have known, is that Lexi's genetics had a mental illness time bomb waiting to go off.  That time bomb was going to try to kill him and soak into his soul like a degenerating toxin of thoughts.  I call mental illness a cancer of the thoughts because it is a legitimate medical and physical illness that needs to be treated as such.  There is no more will power involved in fighting mental illness then there is in fighting cancer.  It isn't an attitude problem or something we grow out of like an allergy, it is a true illness.  It CAN go into remission but it is always there, lurking and waiting for your moment of weakness to attack the brain.

According to Lexi's doctor his form of mental illness is one of the worst she has ever seen because of how young it hit him and how hard and fast it hit him.  Her projection for him is that we probably can not count on him stabilizing until he is in his mid 20's if not later. The progression of the disease will slow down once he is in his 20's but it will still progress.  Lexi and I work very hard to prove her wrong.  It isn't necessarily being stubborn, we just know we proved a LOT of people wrong about his autism and his abilities as they were once projected when he was a very young age.  I take comfort in my son's ability to prove doctors wrong like a warm cup of denial tea that I sip on and flavor with every teeny tiny success.  Successes I am grateful for-see list above.  Then there are the moments when reality kicks me in the stomach.

It can be small like a comment from Lexi, I was walking around campus today and couldn't stop laughing, have I taken all my meds lately? It can be moment when he hits lows that he questions if his meds are working at all.  It can be phone calls front he school questioning if his meds have changed or if something else might be going on at home that could be causing this or that as points of concern.  The suckiest answer is "no, meds are stable and nothing is going on at home."  This is when we begin the thought process of, his mental illness is progressing and it is time to up or change the meds.  *kick in stomach*  Here's the thing, he has only been stable for about 10 weeks.  Come on!  Give the kid a freakin' break!  He's cracking through his meds?

Here is my prayer...Lay off of my boy, God!  He's one of the good ones.  He has struggled through all that you have dished out at him and remains one of the good ones.  He is beautiful, compassionate, intelligent and just good to his core and God you keep shoveling more and more struggle on to him.  He gets up every day and battles his social deficit and anxiety, the frightful ambiguity and peculiar world of other people. He battles memory problems from the mental illness, uncontrollable mood swings that terrify him because he feels so out of control. He struggles with reality from anxiety provoked hallucinations that have tried at times to kill him or entice him into psychotic breaks. Through it all, God he remains now hopeful of a full and prosperous life, he chooses to search for the truth of God and the light in the world. Why do you keep making him or letting him get worse?  That is enough God!  This is enough for him. LAY OFF!  Damnit God, lay off my kid!

My heart screams this as I make the phone call to his psychiatrist letting her know that we need to meet soon to discuss his meds.  I am reminded that he is on maximum doses of some seriously strong medications and that it is not good if his illness has progressed past these medications.  I pray out to God, who I know is big enough to handle my anger, time to lay off my boy.  Let him be healthy, God.  Please, just let him be healthy. He has so much good to offer. So much light to shine.  I hope my prayers are heard, answered and fulfilled with every cell in my body and every intangible fiber of my soul.  I am grateful that God can handle that I am ticked off.  I hope I never have to understand fully what it is like to have a child with cancer or some other form of irreversible deadly disease but I imagine they get pretty ticked off at God too.  How hard it is to watch our children suffer and struggle. In my humble opinion, dear God, we've ha enough.  Amen.

Small Victories

It may seem stupid to some but today I am just in shock. It is hard to explain why I am in shock but it is because I passed.  I didn't know that I could pass.  I hoped I would and I worked hard but I didn't know I could.

You see, so much has happened. I have spent so much time in the chaos of my son's disabilities as his mental illness triggered over a year ago and the suicide attempts began and his craziness blew up like a bug bomb in the kitchen pantry. I have spent so much time throwing out what has been damaged and sorting through the wreckage as I try to keep moving forward, keep him alive, functioning and happy. I have been trying to keep my daughter as damage free as possible while also helping her stay in our new reality. All the while I have been continuing my studies part time in law school.

Most definitely my law school experienced changed as all of this exploded into every aspect of my life. My support network practically disappeared but other types of support came out of the shadows. From clients who deal with similar loved ones feeling free to tell their version of crazy and understand mine, a fairy dog mother who occasionally drops food, clothing or pet supplies at our door and keeps us going with her angelic kindness, a Mom who has risen up to be one of my only true sounding walls in the Universe and a new church community.  As isolating as crazy has been it has also been incredibly revealing. Many fell away all of a sudden, many opinions and judgments were launched at us feeling like hand grenades some days or even land mines we need to tip toe around.  The landscape in crazy town is very different.  There is no way to know what each day will bring and for that matter, the world here can change on a dime and all we can do is be prepared to stay calm, know where our shelters are in case the storm gets too out of control.

And yet, one of my sanity keepers has been law school. I think if I did not have law school during this sleep deprived crazy town shake up I would probably have been swallowed in self pity, overwhelmed, grief.  I had something demanding my attention, pulling me out of my head, my grief, my shock and forcing me to take a breath and change my focus.  Sometimes I physically had to hold my head in order to focus because I felt like my thoughts were on the verge of implosion...maybe they were.  I stopped having faith that I was a good student but I was a student who had tenacity and persevered.  Now, as I round the curve in my last year of law school it is time to look at the bar exam. One of the steps to taking the bar exam is the national legal ethics exam called the MPRE.


The timing ont he MPRE couldn't have been more crappy. As the service dog organization I had contracted with and the service dog my son had pinned his hopes and life too crumbled and the chaos of that mess became hours daily of emails, phone calls and worry the MPRE loomed in front of me and immediately following the date of that exam were my final exams for the trimester I was currently attending.  I insisted upon this date though because if, by chance, I did not pass this exam I would have yet one more try at it before I was too deep in the muck of bar exam prep and I wanted that cushion.  I launched into my studies for this exam through all the chaos, the Crazytown storms and so on.  The form of questions for this exam are my mental nemesis and my score was wretched.  One day I would have a passing score on the practice exams and the next day I would bomb it.  I read, practiced, studied, listened to lectures, podcasts, anything and everything to help me.

I took the exam with accommodations for my visual impairment which threw me for a bit. I listened to a cd of the questions and the answer choices and then circled my answer.  It was truly the first time I learned to close my eyes and just listen. I have always tried to read and listen but with the degeneration of my vision the two together were creating almost a static in my brain.  The questions were hard, confusing and so many of them I just laughed at and circled an answer in a "whatever!!!!" type of thought process thinking as I walked out of the exam...I have no flippin' idea how I did on that.  There were so few question I actually thought I understood and was clear on the answer choice.  I was pretty sure that my brain was now completely destroyed and that Crazytown had rotted my potential. I thought I had no chance in hell at passing the bar and finishing law school was really just an exercise in stubbornness.  I had resigned to the thought of if I passed it would be by the grace of God and if I fail I will continue to take it and the bar until I pass just out of spite-just so cCazytown will not win.  I walked out and let it go.

This morning I got my score on the MPRE and I not only passed, I ACED it.

Ok...I got my kids out the door to school and all of a sudden started crying.  The last year and a half flashed before my eyes, the pain, the fear, the ER, the psychiatrist appointments and the constant bad news, the torture in my boy and the fear in my girl and my feeling of utter helplessness and confusion.  I couldn't breathe for a few minutes as all of it swarmed my brain and I stopped on one point of truth...I passed.  Through all of that I persevered and did well?  I may still have redeeming qualities in me yet.  I might be more then all of this pain. I might be more then parenting successes and failures, crazy kids, botched service dog organizations and I might actually be ok.  I ACED it.  By the grace of God I ACED it.

This is exactly what I needed as I move towards the bar exam and towards graduating and wondering what in the world am I doing, visually impaired, mayor of Crazytown and not even able to find time to do my hair or wear make up.  I might be ok.  To quote a song I grew up believing and admired, "she might just make it after all."  Unlike Mary Richards I do not want a husband...I want a life.  I want happiness and to help people and to affect change for the better in my world.  Thank you God for giving me this nudge...this gift.  I ACED it.  By the grace of God, I ACED it.  By the grace of God I go forward. I celebrate my small victory.

The Road to Bring Mickey Home

Well, it has been a while since I last blogged and there are lots of reasons for that, not all of which I will  go in to but some of which I feel needs explaining.

As many/most of you know we contracted with an organization last fall to help Lexi get an autism service dog. I had done my due diligence in researching organizations and needed one that would not only address autism but psychiatric issues as well.  We began our fundraising and have been blessed by our community and friends coming out and helping us raise over $13,500.  We completed our fundraising in early May and were told that our dog, Mickey would be moving to advanced training no later then early June.

Around this time, the organization began having some trouble which seeped like stink into many of the families lives and affecting our fundraising abilities, our support for our journeys and our kids. In my opinion and from my limited perspective there seem to have been some mismanagement issues in general with the organization and maybe with some of these issues.  I don't really want to stir up stink because, frankly I don't want to know more...I just wanted to keep my kid alive and get him his dog.  I was and still am very sad for all who are affected by their negative experiences and hurt by any of what has happened and I have asked for prayers to surround all of us, including the owners, managers, trainers and even lawyers involved on all sides of these issues.

As the negative statements started to fly, Lexi began to panic and lose hope that we would ever see Mickey in our home.  Mickey was his only hope at times and the fading of that hope allowed the darkness to come back to my son.  As the change of schedules from school to summer break came on, Lex fought the darkness but it had a choke hold on him.  Mickey did not advance to his task training as planned and we were told to be patient and allow another month.  When the next month had passed and still he had not passed into his next phase of training I finally asked if our dog was being delayed because of legal troubles and without going into details, the answer was yes.

The organization announce that they were not able to resolve the issues at hand and would be dissolving and this of course sent Lexi in to a panic.  We lost contact with the organization itself and began our many communications with their lawyer.  Rumors, negative statements, name calling and blame throwing seemed to hover around like a dark cloud to our cause and I really wanted to keep cutting through it to stay with the facts, the important issue of where is our dog and how do we get him moved forward or in to our possession.

After a great deal of work finding and keeping to the facts and staying out of the focus of blame or negative chatter we were blessed to be able to transport our dog from his amazing puppy raisers to the advanced trainer with guarantees that he would get his training completed and be placed with Lexi.  While our sweet Mickey had some holes in his training he had an awesome foundation with our puppy raisers and is an amazing dog who is so willing to learn and please that did not have far to go in his advanced training.  We did not need some of the more complicated skills like tethering so the trainer felt that Mickey would be a quick learner and able to be certified with his basic SD skills within two weeks.

The trainers facility was really nice and peaceful and all the dogs seemed to just hang out together in these big yards, relaxed, happy and calm.  We watched as they did some basic work with Mickey and they were direct and focused but quick to praise him and engage with him celebrating any success he had.  I felt very confident leaving Mickey in their capable hands.

Shortly thereafter, the lawyer called with more difficulties and as the first week went forward it was then announced that the organization would be filing bankruptcy.  I was encouraged to speak with the trainer and see if she would still be able to complete our dogs training and certify him but if she did it would be without the backing of the organization.  At this point, I gotta tell you, it just felt like we were in this long, slow moving train wreck and every time we thought we could breathe out more started to snap and crack and damage just kept happening.

Speaking with the trainer who had become so overwhelmed she felt like she just needed to release the dogs as they were and that I'd need to come get our dog as soon as possible.  Completely understanding her perspective, which is not completely my business to disclose all here, I agreed to come get Mickey as soon as we could make the trip.  She promised to continue to work him until we arrived and if he could pass his basic service dog skills she would still be able to certify him even without the organization's backing. She has that ability and capacity so I trusted her opinion and hoped upon hope that Mickey would be able to pass.

And so we made our journey to pick up Mickey...my stomach in knots hoping for our certification and remembering to have faith in Gods plan, even if it wasn't my plan.  Lex had struggled with his anxiety and darkness and I just knew that if we did not get Mickey we would be back in mental hospitals if not worse.  We arrived at the training facility and once again were greeted with a swarm of relaxed happy labs.  One of the trainers brought Mickey to us and showed us all the tasks she was working on and how to continue our work.  Mickey passed his basic service dog certification and we were given release forms and paperwork and instructed on how to help Mickey strengthen and solidify his skills.  I know the trainer was in a hard position and she worked very hard to make sure that Mickey was/is the best dog for my son that he can be.

We are setting up with a trainer locally to help Lexi learn how to work with Mickey and finish some of the advanced service dog training tasks. Mickey is a perfect gentleman in public and immediately bonded with Lexi,.  They LOVE one another.  I have never seen my son smile so much in his whole life.  Mickey lays his head on his lap and stares up at my boy keeping his eye on his forever boy waiting for whatever comes next relaxing into their connection.  I watch the two together and know that every step of this journey, bumps, scrapes, bruises and sleepless nights were worth it to see that smile, to see his hope return and to know that tonight...I don't have to worry about suicide attempts, his anxiety or panic attacks, his feeling isolated or alone because Mickey has given him purpose, hope, direction and a friend.

I KNOW that as this train wreck has happened to our family we were in the part of the train that got the least amount of damage as we have survived with our dog while MANY are not able to get their dogs because either puppy raisers are too afraid to hand them over to the trainer not knowing who to trust or because they do not want to take the dog untrained "as is" for very understandable reasons or some who just simply can't get the money or time to make the trip to retrieve their dogs even thought they have fully paid/raised their funds and deserve their autism service dogs or seizure alert dogs or diabetic alert dogs or whatever their service dog was going to do to save the life of their child.  While my heart cries with joy as I watch my son smile it is crushed for those who are more damaged in the wreckage of this organization.  Yes, there are probably several to blame, name and be angry at but my job is not to figure that out. I do not want to get involved in any of that and trust the lawyers to sort through the wreckage and find the truth as best they are able and hold the guilty responsible.  I pray for them, for the families hurt, for the dogs, for the trainers and for the children.

Tonight I celebrate our journey and am so grateful for Mickey, the organization who brought him to us (no matter what condition they are in now-they still brought us Mickey), the psychiatric crisis team who suggested we begin this journey, all the family, friends and strangers who supported us and my son for having faith through the darkness. Yes, we have work to do but we work with joy in our hearts and gratitude. No matter what bumps we have tripped on or been bruised by in passing...we still made it to this point and gratitude is so much more healing.  Thank you God. Thank you ALL.  We will continue our journey, share our work and accomplishments and ups and downs with all those who have supported us.  We welcome all prayers and support.  Support ONLY please.  We fight darkness with light and love and gratitude.  We look forward to sharing more light. Thank you.

Redefining Hope

I was very silly this morning when I woke up and thought that I would have an easy peaceful day simply because I had gotten a wonderful long, solid nights sleep.  For a moment, like many mothers, I thought that my day would spin around how I am…like many mothers, our day does NOT spin around how WE are but how our children are and how they are facing their day.

It started yesterday when my son's respite worker got married.  Oh, it's not his fault per se but his getting married broke our routine…It is his job on Saturday's to make sure that my son takes his meds int he morning because I leave for work before he gets up and my respite worker normally comes and gets him late morning and entertains him until I get home-also making sure he has taken meds and eaten breakfast.  I forgot when I got home to double check the tmy son took his meds and it wasn't until we got home late last night after the wedding and my son broke a patio table, punched through a screen door, threw ice-cream into my garden and a couple of garden chairs around that it dawned on me…gee, did he take his morning meds?  The lion's share of meds are at night because of their sedative effect and he took those and went to sleep.

I woke up after a wonderful nights sleep and played in my garden, made the family a delicious breakfast and thought to myself, "wow, what a beautiful day…we can get our chores done, relax and I might be able to get some study time and quality family time…won't that be great?!?!"  Both kids woke up appreciative and happy to see a delicious and nutritious breakfast laid out for them.  We at a couple of fresh strawberries and blue berries from our garden as well enjoying our treat and smiling.  I expressed my chipper idea of getting our chores done and then enjoying the rest of our day together.  …and there it went.

The boy melted down.  "I don't want to do chores…I hate f*$!ing chores!"  I remained calm and explained that chores allow us to live happier, be functional and are our responsibility.  I reminded him that I do a great many things for him during the week and doing chores allows me the time to take care of him and do things he needs and wants.  He nodded in compliance and then laid his head down on the table as if he deflated.  His sister decided to take the initiative to get up and get her chores done.  Neither child ceases to find the opportunity to be "the good child" and capitalizing on the moment…she won.

The boy started to harass her and decided to play with scotch tape, a pen, his shoes, the chair and anything he could possibly stem on.  My serenity flew away like a rocket when he flung the pen through the house. I admit my humanity shamefully.  I said out loud, "Oh, I forgot…the happiness of our family rotates around the worst mood and laziness of the teen bodies…no worries here, just go ahead and stem and avoid doing anything productive and we can flush away our possibility of a relaxing happy day together…go right ahead" to which I stormed off to my room like a pouting child.  Really what I was most upset about is that I forgot that having hope is flexible…having  mentally ill kid with autistic spectrum disorder who is also a hormonal teen means that my hope must be flexible.

As the day went on there was a battle between teens, a glass vase broken, things thrown, curse words shouted and so on.  At the same time that he is so repulsive and explosive he wants help managing himself.  This too changes my level of hope.  After he has calmed down he sits and drums on all of the walls of the house, wanting me to come out and help direct him, manage him and give him someone to explode off of so that his discomfort in his own body and brain can be blasted out until he is too exhausted to feel it anymore.

As the boy has recently expressed the desire to return to a more typical school setting under the theory that he thinks he is more stable, moments like these give me pause…remind me to redefine my hope and expectations.  I need to step back and look at the big picture and not get caught up in my silly old antiquated hopes… ones like, I hope he will be stable enough to have a career, meet his personal goal of being self sufficient, getting married and having children and being a better father then his own father was to him.  I have to step back from my investment into the future and look at the wide scope of the past…he is NOT suicidal, he is not hallucinating…he is NOT self harming and our violent outbursts usually don't last for 9 or 10 hours.  He is not bolting except maybe once in a blue moon.  I guess my hope must flex into, I hope today doesn't get worse, I hope that his thoughts get rational again and I hope that nobody or nothing else is hurt in the meantime.

AS I have been writing this, he has come in trying to pick a fight…pacing through my room, cursing and waiting for a reaction.  I stay calm, keep typing and he leaves.  I guess I have a small bit of grief that I once hoped for a better day, I once let hope waft into the future and have been slammed back into the moment, this moment of cursing, pacing, stemming, intensity and I redefine y expectations to meet this moment.  I hope it doesn't get worse.  I hope today will end happier.  I hope my daughter won't make it worse and can have the strength needed to let the storm roll by her.  I hope nothing else gets broken.  I hoe tomorrow is better then today.

The Manifest of WOW! In Gratitude.

When you kid goes off the deep end a bit and has hard times it is interesting the give and take that happens in your circle of support. When you have not really slept in almost a year and you have learned the ins and outs of the mental health system so well that you can quote law and patience rights pamphlets and you know every local ER, all the nurses names and which ones are on which shifts, something inside you gets stripped down in a way to a no nonsense, I don't have time or energy to manage b.s. attitude.  What happens is you really see who gives a damn and who does not and you kind of learn to let those who don't really give a damn swim in their own pool, with love and acceptance but when you see those who really do care and step up to show you how much they care…it's like it changes the meaning of life all together.

What a journey!  I don't even know how to explain how much my perspective has changed except to put it in the perspective of this fundraiser we threw last night.  From the deep family of mine with some family members who won't acknowledge what we are doing to some who are working almost as hard as me, even long distance to try to support our cause and everywhere in between.  Family that drives several hours just to make sure you have someone FROM YOUR family there to support you and those who simply text to cheer you on…but it all means so much from my perspective.

Then there are friends…wow…I mean you really don't know your friends until you are sitting in an ER and someone offers to bring you a smoothie or a cup of coffee knowing what you are going through and how long you will be in there for…or friends who just call and leave messages saying that they care, they don't need to know the details…they just care.  I mean WOW!  Again…means the WORLD. Then you barely meet some folks for a few months and they get it and come out to support you…help you with whatever your goals might be.

The Lion's Club of our local town agreed to partner with me to throw an event…folks I don't even know care so much about my kid that they wanted to help him, Friends and Lions cooked soup and salads and found ways to deliver them, lend crock pots and salad bowls, sell tickets, advertise, hang flyers, repost and share info on social media and then come and support the actual event.  Some insisted upon helping set up, some unexpectedly stayed and helped clean up.

I walked around during our Soup N Salad Fundraising dinner and became absolutely in aw of who showed up.  At one point the room was filled and it was hard to find a place to sit.  Everyone was positive and happy and there with care and generosity.  Nobody was afraid of my son or judging my daughter or I because of his differences, they were there BECAUSE of his differences.  When Lexi felt overwhelmed he had cart blanch permission to just leave, go outside and get fresh air, calm down.  At one point I saw him sort of shaking in a corner, smiling but totally frozen with overwhelm and I helped guide him out the door for air.  How hard it must be to feel so loved and happy but still be totally overwhelmed.  Nobody in that room thought he was weird, judged him, me or thought anything negative…he was totally accepted…we were totally accepted…better yet SUPPORTED.

When it came time to draw the raffle prizes and announce the auction winners Lexi and I stood in front of the whole crowd.  As I started to thank everyone for coming I became totally overwhelmed with gratitude…choked up for a minute like a dork…standing there in complete aw.  It was all physically manifested in front of me. All of it, the long distance, the care of everyone who had gotten us that far along with those who were right there in front of me.  It was so powerful.  It was kind of a moment when I was glad that I have a visual impairment and could not see all the faces clearly because it just would have been too much to take it in at that level.  My breath left me for a moment and I just could not speak.  I was not going to let a tear fall because I knew if I let any of that emotion leak out it would get ugly so I took a breath and had to almost side step my own overwhelm and get down to business of raffle and announcements.  I then went in to this almost completely surreal dreamlike space…it all just swept over me and kept swirling around me.

As the night wrapped up and we came home with sore feet and I had forgotten to eat anything but was so filled with aw and amazement my stomach couldn't take any food, I washed all the soup pots, the crock pots and salad bowls and then just sat there.  Lexi paced for about two hours in our house just wired with the energy of the evening.  There were not a lot of words…it just all seemed so amazing.  We literally spent our evening surrounded in love, support and generosity of all those who are working and care so much about keeping my son alive and helping him and my family.  Wow! It has honestly been  such a lifetime of judgement, criticism, battles and struggles that when you have an event to condense down into one place all of the love, support and CARE…it is incredible.  No words can ever truly describe it.  Thank you is not enough.  Wow…in gratitude.

Luck…it is what it is.

I heard a wonderful story today on NPR's "This American Life" it was after the story of the folks in Mexico and it was about a woman named Juliette who runs the coffee house in SF, CA called Trouble Coffee and Coconuts.  It tells her story of having the same form of mental illness/bipolar as my son and how she has learned to cope and how she has learned to use her community around her to keep her in her head and on track. She always wears the same clothes so that if she gets out of her head and is wandering someone will recognize her and help her.  She always takes the same route and talks to the same people every day so that if she is late or having an "episode" they will help her. She has learned to ask for help and tell people she can't think straight and needs help getting to work or home.  She swims every day at China Beach so that the cold water will snap her head straight and help her focus.  She struggled for so many years not understanding her mental illness at first thinking someone had slipped her acid or some sort of drug.  She has lived several places, even in a tree.  She blamed herself and thought for years she was undeserving of goodness.  Somehow, her life journey created a collection of experience that she could turn in to her own business.  She started this coffee house because she worked in a coffee house and new the business.  She sells cinnamon toast because her Mom used to make cinnamon toast and it helps her feels safe.  She sells coconuts because they are the one food she can eat that doesn't mess with her head-for some reason she can't stand the sound of chewing.  She sells grapefruit nice because eating so many coconuts to sustain her she needs vitamin c.  That is all her business sells and there is  usually a line to get in the door.  Through her struggles…and there seem to have been so many, she found success, a place to be and live in the world, a community to help her.

I look at my son and wonder if he will be so lucky.  Is it luck?  I'm not sure.He is doing so much better with his new meds.  He has been relatively stable with less dramatic ups and downs but still ups and downs here and there.  I am obediently following the psych docs recommendations and trying to keep him happy…low to no pressure and to her absolute credit it seems to be working.  He is mentally healthier.  Note to those who struggle with mental illness of any kind but especially those on "Tegratol" novocaine reacts with the meds very poorly and Dayquil.  WHEW….bad deal.  Don't do it.  Lex has two more cavities to fill and I am just not able to handle it right now-need to wait until a trimester break so that I can manage the several days of crazy that follow novocaine at the dentist.  That has not only added to our ups and downs but also given us that reality check that, even though he is relatively stable, the mental illness is right there behind those meds waiting to crack through at any given moment for any excuse.

I guess my point in writing this blog today is because this woman gave me a twisted sense of hope and sadness all at the same time.  Yay, she found her place.  Yay she is successful.  She still struggles so intensely with her mental illness.  She said just the day before doing her story she couldn't even go into her coffee house because her head was int he wrong place and noise was too painful. I think to myself, man…she doesn't even have autism thrown in to the mix.  Imagine how hard it must be for my kid some days.  I can't imagine living every day not knowing if your own thoughts are betraying you, if your brain is twisting or what you are experiencing is real.  I can't imagine trying to fight through that distortion of reality, senses and thought all the time.  So the hope is that, even though this woman who struggles with one of the diagnosis that my son struggles with has found her place in the world, learned how to reach out and get help she still suffers and fights for sanity every day.  Is it luck?  I don't know what it is, bad luck, good luck, just it is and it is how it is.  She sounded proud of herself and happy with her life as it is now.  I guess that is what i hope for when I look at my son's future.  I hope, even though he has to fight through complete distortion and static in his brain all the time that he will find a place where he is proud of himself and happy with his life.  May he be so lucky.

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.  :)