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.

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!

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

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

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

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

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

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

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

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

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

Screw Geometry

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

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

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

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

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

Sometimes Bipolar is funny!?

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

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

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

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

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

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

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

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

Mom, am I crazy?

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

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

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

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

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

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

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

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

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

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

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

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

Another Step Toward Hope...

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

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

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

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

A Ray of Hope!

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

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

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

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

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

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

Unclench

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

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

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

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

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

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

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

adjustments

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

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

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

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

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

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

The Medication Situation

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

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

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

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

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

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

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

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

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

Stigma!!!!

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

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

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

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

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

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

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

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

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

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

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

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