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.

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 Grace of Mental Illness

I just started my morning with yet another meeting at my daughter's school.  Nope, it's not the ideal way to start a day for sure.  MY daughter's a great kid, really, and she is kind of a hot mess all at the same time.  She has sort of created this tornado around her in order to distract from the chaos at home.  It's all academic struggles, knock wood, nothing too terrible BUT knowing that she has an i.q. that matches her brothers, it is nothing but frustrating to watch her sabotage herself.  She's good at it too, manipulating and lying to everyone, including herself, in order to keep that tornado spinning wildly all around so she does not have to deal with our home, which is endearingly have renamed "Crazytown".

I have realized something in the last month, as a parent, I tried everything to make sure my kids would turn out "right".  Yes, I know, stop laughing.  Seriously, We did almost no t.v., still rarely turn on the tube.  I fed my kids all organic and they didn't have refined sugar until they had reached 9 and 7 years old.  They appropriately hated fast food and the most they ever got from a McDonalds was their apples.  We had no video games until they were 8 and 10 and even then it was only those active games where you have to stand in front of the magic eye bar thing and move around in order to play. We worked with naturopaths, homeopaths, doctors, specialists, spiritual advisors and the whole gang of well intended healers.  I really feel like I gave it a good go.

Every once in awhile I get someone who asks me if I've heard of a theory that kids have more of "these" problems because of the fat in fast food, or the hormones int he milk, or the toxins in the air, or the television shows, or the video games, or the pharmaceuticals, or the whatever is the blame de jour. Hey, I'm happy to find blame...lay it out there.  We are all looking for reasons, right?

Here's the thing, man, I mastered autism.  I studied, went to seminars, saw specialists speak, asked the hard questions.  I did the same for ADD.  I was and did totally take the blame for the autism and ADD. Sure, whatever, blame me as long as I can control EVERYTHING to make it better.  Blame me as long as I can make a plan for hope, the future, etc.  I became MASTER MOM of AUTISM and ADD.

and then...

Ya take your hand full of dice and roll them on the crap table of hormones.  It's all over, baby! It's OUT oF YOUR CONTROL.  They start to become their OWN people and hormones just shred all of your "right" and "good" plan.  Hormones LAUGH at your parenting.

I was telling the school psychologist after the meeting as she discussed her daughter, just entering adolescence and the plight of other parents struggling with their unique and challenging kiddos that I used to have such a different take on it all, feeling responsible, the need to control, check off y list of causes and cures and so on but now, the grace of mental illness is that I stopped.  After the third mental hospital visit, I just stopped.  It just got too fricken BIG for me to try to take responsibility for anymore.

The first hospital visit was all about shock and awe.  The second was the first suicide attempt with it's own chock and horror and the horrifying betrayal that your kids head can undo all of your efforts to keep them alive in a blink of an eye.  By the third hospital visit...something just cracked, fell away.  It's not giving up on my kid, it's giving up on shouldering all the blame.  It's where I started to laugh, let go and get my priorities straight.  It wasn't about ME at all, it was about my kid and their journey and figuring out whatever I could do to guide, not control.  I started to see myself more like a pinball machine and the kid is the ball...my job is to keep him from sinking but let him roll on his own and find his path.  That's it, that is the grace of severe mental illness.

If I can spread the love at all today, may it be to allow other parents to release the fear, the control, the white knuckle grip on blame.  There is always an excuse if your chose to use it, and there is always blame if you chose to place it but there is grace in letting it go and allowing yourself to just deal with what you have.  At least, it is my grace. I have become more direct, honest, present and proud of our really ugly, bumpy, bruised, battered journey.  Maybe my bruises are heart shaped, like a valentine.

The First Time

As things have calmed down, all things relative, I have had some time to reflect, although I'd say it is more like flash backs.  Maybe the last 10 months have been like a bad acid trip and now, in order for my brain to process it all I have these weird moments where I space out and sort of re-live, go over, re-feel how some parts of the journey happened.  Maybe it all happened so fast and I had no time to really process a lot of it, now my brain is trying to go back and work through some of the essential parts in order to heal.  Maybe that's what acid flashbacks are, the brain trying to heal...I don't know, I've never done acid and am pretty sure it is not worth trying at this point in order to get a good comparison.  My life is trippy enough.

One part that I flash to and get lost in is the day after Mother's Day this last year.  For months my son had been getting more and more belligerent, irrational, explosive and intense.  I had spent most of Mother's Day in tears where he would cycle from screaming at me to crying and begging forgiveness and then back to screaming at me.  He could not get a rational, straight thought in his head nor keep a conversation going.  His thoughts were erratic and his behavior unpredictable.  He had not slept for 7 weeks despite trying a multitude of sleep medicines.  At one point, during the evening hours of Mother's Day he was begging for me to help him  and I told him I had heard that if we took him to the E.R. that they would have to get him psychiatric help since we could not get a psychiatric appointment any sooner then months away.  He agreed, in tears, got in the car.  We drove to the freeway entrance and both started crying.  I told him that if he could just get himself to bed then first thing in the morning I would get him to the pediatrician and the therapist and someone could help us.  He agreed and went to bed, both of us exhausted.

The next day we went to the pediatrician who could do no more to help us then had already been done, gave us a number to call for a psych referral which we already had an appointment months away that could not be moved up or expedited.  We went to the therapist for an emergency appointment.  I sat out in my car while he went in to his session.  The two of them were not in there for more then ten minutes before they came out together and walked over to my car.  I had a sinking feeling....sort of the opposite feeling of thinking you might win the lottery today.  The therapist told me that he feels it is imperative that my son go immediately to the ER, he was unstable and not sure he could keep himself safe.

To say that my heart sank would be a gross understatement.  I've been through a lot wit this kid, autistic rage tantrums, lots of broken property, doctors, specialists, diagnosis, school battles and so on but there is no way to describe how awful it feels to process in your head that a mental health professional feels that your child is unsafe to take home with you.  He asked me to agree to take my son immediately to the ER.  I did.

What I flash back to is how I do not remember breathing after that agreement.  If I did breathe, I would have cried and I needed to be strong to get my son help, to empower his honesty and courage to ask for help.  I needed to process and hold my family together even though it felt like a scud missile just hit my heart and home and family.  We drove to the local ER in sort of a surreal state of quiet.  He was afraid to go but afraid not to go.  I told him how proud I was of his courage to be honest and get help.  He whispered, "I'm scared, Mom."  I reached my hand over to his hand and in a very rare moment of our lives, he allowed me to break through his autistic tactile defensive wall and we held on to each other for a few minutes, hand in hand, grasping for hope, grasping for strength in each other as I tried with all my soul to let him know that I was not going to let go of him.

This was the first of six mental health hospitalizations,.  This one did not involve an actual suicide attempt like the others did.  This was the first and last time that I cried as soon as he was strapped on to the gurney and rolled away by the EMT's to be taken to the psych hospital and the release of him being out of sight created a burst of tears from deep in my gut.  The shock, the horror, the fear, the confusion, the pain of the process, the exhaustion that vomited out of my body when he was out of my range.

I will never let go and I will hold on to him and to hope.  I will work every muscle I have in my heart and soul to help him because I am his mother, I am his advocate, his warrior, his guide and teacher.  I am so sorry for any other mothers who have walked a parallel path, and I've known a few who have followed me in to the same ER for their first times.  I tell them the view from the frequent flyer seat now, how to find the more comfortable chair, who to ask for a warm blanket, where to find the coffee or juice and how to navigate the time and waiting between the process landmarks.  I am now a frequent flyer and seasoned Mom of the autistic/bipolar world but I remember that reach, that grip, that invocaton of the first time. Like a flash back, I remember that first time.

My Two Cents and my Own Casserole

Last night 60 minutes ran a story of tragedy that daringly exposes some of the broken pieces our mental health system has become and I have the link here: http://www.cbsnews.com/news/mentally-ill-youth-in-crisis/ .  This man deserves your time to watch his story and his son deserves our conversations about it.  Further down the page is a 60 Minutes Overtime segment where the interviewer and producers are interviewed regarding the deeper issues that they saw.  It is that interview that really spoke to me.  It is about the stigma of mental illness.

I have written in my blogs about the stigma of mental illness as we have been on this journey and I have written about one of my ER visits with no beds available so my son sat in the hallway on a gurney for 26 hours. I have written about the casserole phenomenon where churches and friends bring casseroles for the sick, broken body parts, cancer, heart disease, etc but nobody comes for mental illness or autism.  While my son has been in and out of the mental hospitals in our local area and I have sat for hours, even days in the ER waiting for him to get a psych bed, only one family takes my daughter in and nobody else calls, brings food, offers to give her rides or even a hug. My own church at the time basically ignored my cries for help as my questions to God swirled in my sleepless insanity and my physical health held on like a thread.

I have friends who care for a sick or elderly loved one and think it is comparable but unless that sick or elderly loved one might kill you in your sleep or themselves, you have no idea.  That statement to me is as stupid as a woman saying she understands what it is like to be a single parent when her husband travelled for a week away from the home...really???  These statements are made with the best of intentions and slightest effort to reach out and understand. I give them credit for what they are worth.

One of the points I want to follow up on is a furtherance to the interviews here.  At one point the producers said that they have young children who freak out and "tantrum" but this goes beyond that.  It is truly hard for people to understand how this goes beyond a "tantrum".  A regular tantrum can be dealt with rationally, the kid will come around when rationality hits them.  When you need to take something away or behavior modification techniques are successful then you have a kid that can be dealt with.  The mentally ill are not rational.  Seriously, this is huge.  Sometimes you can crack in to the crazy and get them to calm down or use a different part of their brain which can reduce the neurological storm but there are many times that this can not be reached.  I tell my daughter, it is like talking to a meth addict when they are on meth.  Don't try to rationalize, parent, manipulate, behaviorally modify or reason with the mentally ill having a "flare up" or unbalanced moment.  Most of the time it is finding a coping strategy to wait it out with the hope of some sort of intervening medication to kick in, if you can get them to take it.

The interview speaks of the holes in the wall, the physical damage done by the mentally ill.  Yep, that's all real.  I know folks who have had "rough" teens that have similar damage.  My family and I were asked to leave our last place we rented due to my son's behavior and the damage he caused. His irrational and "quirky" behaviors, the holes through walls and doors, windows broken, etc are unattractive to most and sure makes a gal hard pressed to take pride in her home and family. We live in shame just based on our physical environment sometimes. I certainly don't invite folks over and always feel embarrassed if someone "drops by" but I have to let it go and use my great excuse of being a part time law student to make me feel better.  The truth is, if I were not in law school I'd probably be driven crazy by the condition of my home...I'm a clean and organized person who used to love to have folks over and took great pride in my home...I had to let that go a while ago. I am humble in my coping strategy for sanity.

My son's latest break through of his meds as his bipolar worsens left me with a psych doc appointment like a punch in the gut...he's basically doing no academics anymore, he burrows in his room and getting him out to interact with the world requires greater force then a crow bar. The psych doc once again told me to lay off, "he is not normal, he will never be normal, he will not have a normal life and if he is happy then leave him alone.: For 15 years of autism training I was taught to help him fit in to the world, into normal. Now I have to let him rot, stew in his stink in order to alleviate stress. A happy brain degenerates slower then a stressed brain and slowing down the degeneration of mental illness and the psychotic breaks that follow does less damage then him not learning geometry or having "appropriate" social interactions.

Seems so weird and hard to calibrate to and understand. The psych doc held her arms up and spread her hands as wide as they could go and told me, "his autism and mental illness is HUGE to handle".  I was not caffeinated enough at the moment to keep both hands in scope...I'm not sure the hand gesture demonstration was completely necessary...but maybe...I'm kind of thick. Maybe she caught a mental illness autistic fish "THIS BIG"!  I'm not sure what my role is here...keeping him happy? He barely participates in chores, life, anything...do I allow that? If I am normal, how do I speak the language of "not normal".  Isn't that like asking a parent to suddenly learn french because there child can no longer speak english?

I know that an autism service dog will help drag him back in to the world but the wait is long and the journey a rough one to raise money. Try raising 12,500 while working, doing law school, managing crazy town with autism and all the psych, therapy, doc and school appointments that go along with it (not to mention the large amount of trees sacrificed to document this journey with all of these services and forces of "care").  My son needs 24 hour supervision and is only in school 2 days a week because he can not handle any more. Then add in the sib of it all and her challenges and break downs...and she has plenty, believe me. God has humbled me to my knees so many times they are bruised but I don't stop praying. We have lost friends and family members along the way but those that step up are valued even more.  I'm not sure where to look for hope so I just hold my hands open wide.

I make my own casseroles and have stopped attending my old church. Nobody really can understand unless they have lived it.  Nobody could possibly understand what it is to watch a child that has grown up the same age as your child thriving and excelling and smiling with pride for that child and a crushed heart for your own wondering why oh why God would torture your child/family and bless another. I white knuckle faith and speak out as often as I am able to help break down the stigma and the fear and to help educate anyone who gives a damn. I stay on vigilant suicide watch and ready to kill the buzz of mania at any given moment.  I manage sensory overload and "stemming" teen and try to find every opportunity to educate his rational moments with social appropriate behavior and care. I hug the sibling and try with all my heart to give her confidence in my strength and int he world as she walks on shaky ground each day. I am not victim to my son's "temper tantrums" but an advocate for my son's autism and mental illness. I am advocate for my families right to be a apart of the world and redefine "normal".  This is my two cents added on to the 60 Minutes story from last night.

DAMN!

8 weeks. We had 8 weeks of relative stability.  8 weeks.  I almost started to breathe out.  I almost had found hope.  Don't get me wrong, it isn't awful.  Nobody is bleeding and there has not been a visit to the ER and there is no suicide attempts.  For these facts I am grateful.  I think it is possible to be grateful and really bummed simultaneously.  The trick is which one do you focus on, right?

You see, the crazy has come back.  The mania.  Although he is steady on his meds, he seems to have busted through the current dose.  DAMN!  I mean really...DAMN!  Of course I called the psych doc and she up'd the dose of the mood stabilizer...but it isn't quite stabilizing him.  DAMN!  The racing thoughts, the pacing, the loud volume and rambling talking, the bizarre behaviors (although his autism has trained me well in bizarro) the irritability, intensity, jumpiness, overwhelm and his constant declaration of happiness. "I'm on a BUZZZ!"  How I wish I could be happy for him because he feels good.  It crushes my heart.

You see the options are twofold: 1. He has acclimated to the meds and we just needed to up the dose to meet his new level. 2. His condition is worsening underneath all the medicine and we needed to up the dose to meet the new level of mental illness.  Sadly, I ascertain it is the latter because if it were the first one, he would have calmed down upon raising the medication.  DAMN.

So where do I focus...well, I suppose I just keep breathing and being grateful to stay out of the ER and that there has only been intense mania and no fall...yet.  You see, that's the trick...what goes up must come down.  He's no longer rapid cycling-yay medicine-but he is on a cycle that even the new dose of meds can't seem to stop-boo. The mania is notice...it is notice that a fall is eminent, that impulsivity is the norm and that the mental illness continues to "unfold" to quote the psych doc.  DAMN!

So what is the lesson? Do what I can today, right now, enjoy today, work today, participate in today because tomorrow might get so crazy that I won't be able to work, focus, participate or enjoy it.  Procrastination is the enemy of living in crazy town.  Survival is found in embracing the moment for all it is worth.  I can be grateful and bummed simultaneously.  DAMN!

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

The Core Truth of Parenting - Humility

When I write this blog I write from only my experience noting that there are always other perspectives and paths crossing my own that require just as much respect.  With that said, I am writing from a new humility in parenting.  I have raised two amazing kids into their teen years and have learned so much thus far...what a blessing to have them be my teachers.  The autism diagnosis for my son was difficult and brought many lessons and revealed many truths about life, people and myself.  I was brought to my knees many times shedding tears of pain, grief and great joy and wonder.  My son's added diagnosis of mental illness has all but laid me out flat.

I have recently been pulled aside by my son's treating psychiatrist to tell me that in 20 years of treating patients, my son's case is one of the most complicated and severe she has ever seen and that I need to change my expectations  for him.  I am to relieve as much stress on him as possible and nurture whatever makes him happy.  A happy brain degenerates less then a stressed brain.  His mental illness is causing an extreme cognitive impairment affecting his memory. I clarify that it does not effect his intelligence but it does impair his access to his intelligence.  While I have spent 15 years advocating for my son to be in an academic environment that feeds his intelligence and still makes accommodations for his autistic spectrum challenges (which is rare) for the first time in my journey parenting my boy, I needed to ask for remedial accommodations. I cried while making that request, saying it out loud was a new level of reality that was painful to bring forward and move through.

My son, who was on track to go to a U.C (University). and always dreamt of being an automotive engineer in order to create cars that are environmentally friendly and lessen the impact on global warming...now he does not care if he graduates or even continues high school.  The psych doc gave it to me straight telling me to allow him to fail at school, teach him it is not the end of the world and teach him that wherever his happiness and passion guides him is where I need to nurture and feed.

My first response was, how do I let go?  For over 14 years it was all he ever wanted, as his mother, do I hold on to who I knew him to be?  Do I hold on to my son before the mental illness started eating his thoughts?  Do I let the mental illness steal him away from me or do I fight for him to be who I knew him to be?  Where do I fight? Who do I fight? Where do I grab him and hold on tight enough so that he will look inside me and find himself again?  My beautiful, brilliant, quirky boy...what is happening?

As if I were holding a pile of sand in my hands, the tighter I squeeze and hold the more slips through the cracks. I have had to stop and humble myself in my parenting role.  Down at the core of what a parent's job is wanting your child to find happiness.  Yes, we want health and happiness but the mental illness, like a cancer of the thoughts has robbed us of the "health" aspect so I need to go to the very core, root of parenting and in that is wanting my son to find happiness.  What does that look like?  Is it painting, or golfing, or playing with film making, or computers. It is not what makes ME happy as his parent but what makes HIM happy as a soul in a less then ideal shell in this life.

The jury is out on whether he will be self sufficient or even fully functional as an independent adult...psych doc does not feel that the possibilities are strong on that but my son is amazing and if he really wants something, he can do amazing things. I have to not allow this adjustment to lock my son in a box of disappointments or lower standards but instead allow it to free him.  MY change in perspective and expectations needs to free his spirit to go PAST the mental illness and the thought cancer and let his spirit soar.  Does driving a golf cart do that for him...yes, it does.  Let's go drive a damned golf cart.  Does painting do that...yes...let's paint.  Does making goofy videos make him laugh and smile...yes...let's make videos! If he stabilizes and one day master's his mental illness, school, college, etc will be there to try again but in the mean time I must grab on to his happiness and passion and joy like I used to hold tight to his hopes and dreams of college and automotive engineering.

Once again, my son is being my teacher. I am learning what is truly important in life.  These lessons are hard and grief is involved but if I can really and honestly let go and find acceptance in who he is today, right now, then I can find great joy each time the darkness is conquered by his smile, his laughter and that one dimple that pops out when his eyes twinkle with happiness.  Oh how I have loved that dimple since the day he was born.  I have found my true battle.  My battle is with his darkness.  Some days it wins, it takes him down, it takes me down and his sister.  Somedays I win, with a small army of people who care about him.  I am humbled by this journey and when I am laid out flat in grief, heart ache and fear it is much easier to find the ground beneath me.  It is there, on the cold hard ground that balance can be regained.  This is my journey of parenting someone with autistic spectrum disorder and mental illness. This is my opportunity to learn through humility. Grace wins every time I see that dimple.  I am off to schedule a ride on a golf cart.

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!

The Mental Health System and the Process of a Psych Hold

I write this as an honest look into what someone with a child with mental illness must go through in order to get help. The good, the bad and the ugly of how to get a kid help.

The night started out just fine, all were happy in the home and tired.  Medications were taken at the appropriate times and my children, sometimes nick-named "The Bickerson's" were actually at peace and I had hope for a peaceful and easy Saturday night.  Last week in the middle of the night we had a suicidal process stopped mid plan and I chose not to take my son to the emergency room. His psych doc asked why I had not brought him to the ER when he was so acutely suicidal and I told her of my huge frustration in the process.

My son gets to the ER and looks just fine, calm, compliant, polite and the mental health workers look at me like I am nuts to say he is suicidal. It is her insistence that his suicidal ideation is very serious and not to be taken lightly so she told me that if it happens again to tell the mental health worker that SHE was his doctor and that his diagnosis was very serious and his suicidal threats were to be taken at the highest level of intensity.  She told me that if I needed to tell him that I want to speak to the psych doc on call and go over his head and worse comes to worse simply state that I am not leaving the hospital with my son, they are to keep him.  Well, my hope was that I would not need to use these tips for better service but I was wrong.

I had just gotten comfy in my bed, feeling safe and happy enough to actually sleep in my bed fo the first time in a week instead of sleeping contorted on the couch to stay on hyper vigilant suicide watch.  My bed felt so so good to stretch out and just sink in.  Sure enough, as sleep began to take me over I hear the door to my son's room opened which always makes me nervous.  I heard him come down the stairs and walk straight to my room.  "What's up?"...he answered, "Mom, I want to die and I rpomised you I wouldn't but I don't want to live anymore and I can't control it."  Good bye comfy bed, our five minutes together was precious and sad all at the same time.

I sat up and tried my best to distract him, think of hopeful thoughts, the potential service dog, his short films, his art work and poetry, his aspiration to have a job at a golf course driving golf carts.  He said that none of it mattered and was all a waste because he was too much work and not worth any of it and he couldn't go on trying.  After about a half an hour of my full blown efforts to distract and lighten the mood he continued to weep and stay in his deep darkness and I asked the million dollar question, "If I fell asleep tonight, could I trust you not to harm yourself in anyway?"...answer, "no."  CRAP.

We agreed it was time to go the the ER.  I hate that trip.  In the middle of the night we gathered our things and head to the ER, in the dark and cold.  We went in to the front desk and told them that he no longer wanted to live and they processed his insurance card, gave us his bracelet and we went back to triage.  I pulled the triage nurse aside to tell her my son's form of Bipolar includes hallucinations and such and that I just wanted it on record in case it happens so that everyone would know how to treat him if he started talking to his demons or voices.

Upon this information, the doctor on call comes in and sits in front of my son and starts talking to him like he was a stray wild dog. "How are you feeling tonight?" he says in a  soft high pitched tone.  I looked at him like he was an idiot. "Are you feeling stressed tonight?".  DUGH, would we be here if he wasn't???  "Are you hearing voices right now?"  My son looked at him with disgust and said, "no" and rolled his eyes.  I tried to clarify to the doctor that he doesn't hear them all the time, just on occasion and that he was not hear because he hears voices, he's here because he wants to die.  He smiled at me like I was crazy too and said, "Ok, no problem, do you want some medicine to take the edge off of your stress tonight?". My son said he was fine and the doctor apparently frustrated and still looking for his sense of understanding left the room.

We were walked back to the back of the ER where the nurse and the doctor were mocking people who hear voices.  They were discussing how funny it is that people say they hear this or that and that the only voice they should hear is the voice of God.  I sat in the hallway for a second staring at them wondering how they could possibly be so insensitive or stupid and feeling grateful that my son did not hear them.

Next the nurse who was just engaged in mockery of my son's condition comes in and without looking at my son or myself grabs his arms and starts cleaning his fresh cuts.  He's rolling his eyes and says, "you know these aren't that deep, they don't need to be stitched up."  I answered, "We aren't here for the cuts on his arm, we are here because he doesn't want to live anymore."  He sort of froze and finally looked at me and said, "Oh, really?"  He looked at my son and said, "Is that true?" to which my son answered int he affirmative.  Then comes another brilliant patronizing statement delivered almost with a sense of laughter to it, "You are a good looking guy with your whole life ahead of you, why would you not want to live anymore?"  I wanted to kick him in the head but still haven't gotten around to taking those kick boxing classes that would have been so helpful at this moment.

He drew the blood and took a urine sample and then we wait for an hour for the results to come back.  Once the results come back then the mental health worker can be called.  Until then, I sit in an awful hard plastic chair and my son sits on a gurney and we wait.  Finally, the doctor who still insists on speaking to my son like he is a lost dog comes in to tell us that all the tests were clean so now we will call the mental health worker to come assess him.  I muster up a smile of gratitude for the forward mtion of the process and he leaves.

We have always had women mental health workers, even had one lady twice, she was nice, I liked her.  Tonight we got our first guy.  He looked like he was 19 but professed later to have a 20 year old kid so I'm not sure what he's doing to stay so young looking but he seriously looked like he walked otu of an abercrombe andFitch ad with his clothes and cologne.  I pulled him aside when he arrive after waiting for him for an hour and told him what my psych doc told me to tell him.  He said, "Oh, wow...okay, I understand."  We walked back into the room with my son and he pulled out his paperwork and said, "So, what is better or worse then when you were here last time"  I was a bit stunned, I had just explained the progression of my son's mental illness and the serious intensity of his suicidal actions and the concerns of his psychiatric doctor and he was comparing today to last time.

He asked all the questions on his form and then showed us his score sheet.  No, seriously, there is a score sheet.  It is apparently like a quiz in a magazine.  You know those quizzes, the ones that tell you if you are compatible to an executive or a hippy or if you are supposed to vacation in a motor home or on a tropical island.  He tells us that my son lost points on the suicide scale because he is not a 45 year old white male and the fact that he has such a great Mom.  He showed us his arithmetic and declares that my son is borderline suicidal.  I was speechless.  Borderline suicidal.  His chart said so.  We only added up to borderline.  Nothing I said to him mattered, only his happy arithmetic.

 He then turned to me and said, "Do you think you could take him home and keep him safe tonight?"  I was stunned at the question because it seemed so stupid.  I gathered myself after a few seconds and said, "Do you think I would come to the ER in the middle of the night asking for help if I thought that I could do this at home? My son told me that he could not guarantee that he would stay safe if I fell asleep, does this not warrant help beyond myself?"  He stuttered for a moment and said, "but you guys have made it through before, he seem quite calm and compliant, I'm not sure he would really benefit from a psych hold."  Then he said the words that were most dangerous for him, "unless you are just too tired."  WHAT?!?!?!

I stopped breathing for a minute and my eyes went blurry.  He offered to fax the forms to the psych hospitals around and see if anyone would take him.  He said he'd get back to us in a bit. He got up and walked away.  My son laid back in his gurney and closed his eyes and I started plotting ways that I could learn kick boxing in five minutes or less.  My adrenaline started to race and I was working up the strength to tell this idiot that I was not leaving the ER with my son that night when he announced that the psych hospital will take him.  They were saving him a bed and they would process his paperwork.  I remember hearing a long exhale leave my body.

Now, we have done this several times already and the 3am shift almost never processes the incoming paperwork, they wait for the 7am shift to come and in a dump it all on them.  I told the mental health worker that I had a daughter asleep at home that I wanted to go check on and since i figured it would be several hours I would go home and come back. He warned me not to leave because it could be processed very quick.  I went back to the room and waited for 45 minutes for him to come in and tell me that they will not be processing his paperwork until the next shift and it could be several hours.  Um...yah.

My son was sound asleep. I asked if I could write out his medications so that they could make sure he would not miss any medicines-missing meds is very very bad these days.  The doctor did a "tshtpft" sort of sound and gave me a paper and a pen and stormed off-to no other patients in the whole damned ER. I left dizzy and exhausted and drove home where I finally fell asleep around 5am only to be awoken at 7am to a nurse calling to find out what medications my son needed in the morning.  We finally came to the conclusion that they did not have one of the medications so I needed to bring it.  I went back to the ER with my son's meds to find a fantastic nurse on the morning shift.  She was friendly, compassionate and sharp as a tack.  We finally got everything together and my son's transport came for him only 11. 5 hours after entering the ER...our fastest process yet.  We've been there up to 26 hours before.

The transport came and strapped him onto the gurney and rolled him away.  Never feels good to watch that. I always get sick to my stomach. Parents are not allowed to take their kids directly to the psych hospital nor are we allowed to follow the transport to help get them checked in.  I followed my son's transport until it headed in the opposite direction of my home.  I then go home and wait for the psych hospital to call and ask about all his medications and basic info, even though it was all written down and clear.  Four hours later, he was checked into the psych hospital and I could finally take a nap.  I suppose this was an opportunity to google kick boxing techniques but I thought sleep might be more important in the long run.

The likelihood that they will keep him for the full 72 hour hold is minimal.  He hates it there and knows what to say to the doctors and nurses to convince them that he is no longer suicidal.  Because he went in on a Sunday morning and the staff on the weekend doesn't really make those decisions, I am pretty much guaranteed one day of peace but there is no telling what will happen on Monday.  My hope is to have him stay in there for at least two days to give the new medicine more time to help him stabilize without me being on hyper vigilant 24/7 watch in order for my daughter and I to breathe out for a few minutes, my adrenal glands to come back from their afterlife for maybe a day and know that he will be relatively safe.

The psych hospital is not exactly the greatest place but it is the best we have.  He has been uncomfortably harassed in violent and sexual ways by some of the other kids, Being on suicide watch means he has to sit in the lobby all day long except for when he goes to group therapy which is four times a day.  All the kids in there remind me of characters from "Girl Interrupted" and I think they can teach him more harm then good sometimes.  When he gets home, he will need to decompress a bit and eventually he will ask me all of his questions trying to make sense of what he saw and what he heard.  I just pray that I will be able to put those pieces back together enough to help him get on to a safe and healthier track.  No guarantees, ever.