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!