Redefining Hope

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

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

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

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

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

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

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

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

The Manifest of WOW! In Gratitude.

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

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

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

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

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

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

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

Luck…it is what it is.

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

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

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

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!

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.

...and then there is "the sib"

There is a lot of focus on one of my children but part of our family dynamic must be turned to his sister.  She is the "sib" to autism and now the "sib" to bipolar.  She has many typical traits of a sibling to a person who struggles with autism.  She feels left out, pushed aside and resentful of all the attention her brother gets.  She feels her brother gets away with EVERYTHING and that everything in her world is unfair.

In her defense, my daughter has literally been pushed aside and out of harms way.  My big eyed tiny toddler of a daughter would try to get close to me for comfort when her brother used to rage and act scary and in order to keep her safe, I had to push her back and out of the way of flailing body parts as I restrained her brother.  We have moved several times to accommodate her brother's educational needs which has led to her switching schools, leaving friends, packing up and changing her home several times.  She has had her toys and treasured belongings destroyed by her brothers outbursts.  There have been many occasions where we have not attended special fun events or we have had to leave in haste as her brother exploded and embarrassed her as folks would watch us exit with a screaming freaked out child who looked like had been possessed by satan.

Even worse then some of these regular events in our lives is the fact that my daughter loves her brother dearly.  They have been best friends.  She taught him to play.  He would line his cars up in crop circle like patterns for hours and before she could speak, she would toddle over and grab him and he complied lovingly and innocently to her physical demands.  She put a tea cup in his hand and a stuffed animal and physically forced him to pretend to drink out of it.  They sat and gighled together, he because he thought it was so silly and she because her happiness to have him at her tea party.  They have walked hand in hand together through thick and thin.  Yet, her brother can turn on her for no reason whatsoever.  She touched him wrong, he became overwhelmed, he gets anxious and can not articulate it without violent explosive behavior.

This was the world of being sib to autism and now she is learning to walk the world of being sib to bipolar.  Every time she comes home she is not sure what she will walk in to, a manic brother, a suicidal brother, a belligerent brother or even the fear of walking in to a dead brother.   His dark moods make it nearly impossible to converse with him.  She wants to discuss her friends, school and the silly jokes they tell and he wants to discuss why humanity is stupid if he wants to converse at all.  She has said several times over the last year and a half, "I just want my brother back!"  She is afraid of him and for him.  Anything she says to him can be twisted by his brain and used against him or her.  The world is a crazy, chaotic and fragile place.

I am her one source of stability and she is seeing me stretched to my limits, exhausted, frazzled, praying, crying and trying to deal with my own fear and pain.  She does not understand why I need to parent him different, why I can't fix him, how did it all turn so bad so fast and why can't we stop it from getting worse.  She hates all of it and loves him and loves me.  She wishes she did not love him any  more because it is just too scary and hard.  She tries to hate him.  Sometimes she tries to hate me.

She has her own challenges with ADD and pediatric fibromyalgia and anxiety disorder.  She is 13 and moody and hormonal and struggling with the typical 13 year old crazies.  It is hard to focus when the world around you is swirling in chaos. Through all of this, she is one of the most beautiful girls I have ever seen.  She is loving and generous and will defend anyone with a "difference" and has been known to get up into a bullies face to defend other kids and leap to the aid of a special needs kid at every school she has attended.  She has a magical way with animals and children.  She is healing to others.  Some of these traits are gifts from her challenging family, some are just gifts from God to her.  I can not protect her from her brother or our chaotic life any more then I am already doing.  I try to show her love and support her positive activities to put action behind my pride and adoration of her.  It is never enough and I know that.  Since my babies came along, I have said that my son is the love of my life and my daughter is the light of my life and together they are the beats of my heart.

She will always be the sib to all the challenges her brother has and it is a heavy burden to bear.  Because she loves him, she will rise to the challenge and because I love her I will beam with pride for the light she shines on the world.  I know that the Higher Power put us together as a family for a reason, some believe we chose each other in heaven before we came, whatever it is, we were meant to be together through the pain, the love, the fear, the darkness and the light.  She is more beautiful because of my son.  his darkness makes her light shine so bright.

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.  :)

Reach Out

I think we would all like to imagine ourselves as non judgmental and accepting and open to one another's differences.  Oh how I wish this were true for the sake of my son right now.  I admit, even my own journey has been filed with judgements and thoughts and when you throw in the words "mental illness" it has certainly thrown out red flags.  We understand so little about it all.  It is so scary and hard to understand.

There are low levels of judgement and criticism, even fear, to different forms of mental illness.  Depression and anxiety are more widely accepted and tolerated although those who suffer from these illnesses endure a lot of judgement and criticism such as, "just pull yourself together...pull yourself up by your boot straps...don't let it get to you" statements.  I'm sure those are about as helpful to the self esteem of the mentally ill as candy to a diabetic.  Then you get into the more intense forms of mental illness, the scarier ones.  Yep, we are talking, bipolar, schizoeffective disorder and schizophrenia.  You want to get some weird looks from perfectly innocent strangers, say those words in public places.

I admit, I had a guy hit on me in a church group once and he told me he had schizophrenia...I ran for the hills!  In my defense, I was already dealing with being a single parent of an autistic kid and an ADD tornado girl so my figuring was, I had enough problems.  I don't know that if I didn't have these excuses if I would not have run for the hills anyway.

Here's the thing...I brought my son in to a local store here in town.  I know the woman who runs it and her son works there.  He is the same age as my son and goes to the same school.  When my son followed me in to the store I casually but enthusiastically made conversation by acknowledging that the two of them are in the same grade in the same school.  My son mumble an acknowledgement and I saw the other boy tense up.  I asked if he knew my son.  He stopped making eye contact with me and turned his head slightly away and answered "yes".  Everything got uncomfortable...tense...loud but unspoken.  This poor kid felt so awkward but he thought my son was a freak.  He did not want to be friendly to my son.  My son felt it but took it in stride, like it happens every day.  My heart broke.  I felt crushed.  I wanted to ask the kid in my protective Mamma Bear energy, "what in the hell is the matter with you?!?!",  but I knew.  I can't even say I blame him.  I might have been the same way at 15.  It's survival of the fittest in teen land.

The sad part is, that in my experience and recent education, it is just this isolation that aster-bates the symptoms of mental illness.  How can I convince my son he is not a freak or that he is not isolated and that people really do like him when this kid embodies a typical reception among his peers.  Can you imagine the darkness that would result?

How do we teach our kids? How do we teach ourselves, each other?  We are all connected, different, weird, freaks.  Some of us show it more then others. My son has an added excuse of autistic spectrum disorder which is more palatable among the community but still weird for his peers to understand.  We all have our quirks, our fears, our oddities.  We are all part of the human family, connected in our similarities and differences.  How do we reach out beyond our fears and judgements?  How can I teach the world to reach out and accept my son? How do I protect him from those who don't, won't or can't?

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?

The First Blog of our Journey

I'm not sure where to begin except with where we are right now.  Right now I have a 15 year old son who is an amazing young man.  He is handsome and when he smiles it makes the world a better place.  Since the day he was born it has been obvious to all who meet him that he would be an intense beautiful soul that would somehow impact our world for better.  Sadly, his road seems to be one with out ease. Oh, don't get me wrong, there are others who have worse lives and circumstances but clearly the road for my son in 15 years has not been an easy one.

The first five years of Lexi's life were choked by my bad marriage and some abuse toward he and his sister.  I will correct this statement by saying that my intention in getting married was to have a good marriage and I believe it was also the intention of his father.  We were best friends. Lexi and his sister were born out of love.  Along the way, some mental illness issues surfaced for their father which have led to all of us doing a lot of therapy.  My husband left the marriage when Lexi was 5 and we moved closer to my family shortly thereafter.

Lexi was already displaying concerning signs, symptoms since h was one year old.  He was an early developer and walked at six months old.  He laughed and played and was such a beautiful baby but it did not last. He was a beautiful toddler who was  prone to frequent intense rage tantrums, head banging and obsessive behavior. I was one of the only people who could understand him.  It got worse and more intense. I was restraining Lexi 5,6, 7 times a day for a half hour or more each time in order to keep him safe from himself. I have a multitude of stories of being in public and having strangers shame me, offer their judgement and opinions of what they had no way of understanding as my daughter stood by watching and listening to it all.  When he broke his kindergarten teacher's nose, I knew I could not avoid the inevitable any longer and I took him to be assessed.

He was diagnosed with Autistic Spectrum Disorder-pdd-nos.  He was also diagnosed with Anxiety Disorder.  Along his journey he has had the added diagnosis of PTSD, Tourette's Syndrome and ADD and our most recent addition is Bipolar Disorder I.  All of these diagnosis cross over, share symptoms, look alike from different angles but none of them define who my son is and who he can be.  I have learned that a diagnosis is important because it gives people who do not know him a place to start.  When someone is not "typical" then people go into fear or confusion and when you can throw the labels out it gives them a starting place.  Only the most shallow stay at that place.  Anyone with half a brain can move past the labels and see the person.  What an amazing person to see.

This last year my amazing person tanked.  No, really...tanked.  Things were going well up until then...had him in a special school for kids on the spectrum with average to higher i.q.'s.  He had made a few other aspie friends and we felt he was finally learning enough coping skills to transition to a regular high school with an amazing program for kids just like him.  What we did not get told is that the funding was lost for this program.  Teacher's improperly trained were brought in to sae their jobs in the state financial crisis.  The ability for him to work at his higher academic level was greatly diminished and therapies were wiped out.  Feeling his frustration with the slower academics we tried placing him on the main campus...with 3000 other kids.  Bad move.  The violence began to take over our lives.  We were almost evicted from our apartment and he became crazier and crazier.

We moved back to a small town we had lived in which coincidentally had a small charter school that fit his needs perfectly.  He did recovery credits and pulled himself through his first year of high school with a grand finale of spending the last week of his freshman year in the psychiatric hospital for his first 51/50.  For those who do not know, a 51/50 is when you are a danger to yourself or others and they need to put you away for a minimum of 72 hours to help you calm down, be assessed and get your head together.  We followed this hospital stay up with suicide attempts and parasuicidal behavior as we cycled in and out of the hospital a few more times over the summer.  When we finally got in to see a real psychiatrist, not just a band-aid doc from the psych hospital she clarified the diagnosis of bipolar.

Gotta admit, this one was thrown out years ago by a team at Stanford Children's Hospital but I couldn't handle it then.  Somehow autism seemed easier to deal with than mental illness.  Autism was a neurological disorder...bipolar was an illness-chronic and forever.  I could not handle thinking of my son suffering with an illness such as this his whole life.  In reality, he was dealing with it anyways whether I wanted to deal with it or not.  There it was...crazy town all around.  At this point, my boy was just simply suffering.  The depression that kept trying to kill him.  The mania that tore him out of his body and straight into craziness.   I can not explain how hard it is to breathe when you watch your child suffer so deeply.

 I have begun, slowly but surely, facing this new diagnosis.  In the same fervor that I took on his autism, I too must take this on to be his champion.  I must champion for him to live and smile again.  I must champion in pulling him through his intense dark pain until he can find the light again.  I must keep him alive even if he hates me for it, which he does right now.  I must smile and hold stable no matter how much I feel as though I am cracked and broken all over by his horrific ups and downs.  Every day is filled with uncertainty, minute by minute, hour by hour the world can shift from good to bad, from calm to explosive, from happy to wishing death upon himself.  I can not leave him alone for fear that he will not fail on a suicide attempt. I can not leave him alone because he is not right in his head most of the time and his judgement is so damaged he is lost in his illness.  I can not leave him alone because he is so lost in his darkness that I am afraid he can suddenly become irretrievable.

This blog is about finding ways to help Lexi, what it takes, what it is like...to document the journey and to be honest with our story...as I pray for a happy ending...some day.