The Road to Bring Mickey Home

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

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

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

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

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

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

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

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

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

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

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

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

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

Redefining Hope

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

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

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

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

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

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

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

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

The Manifest of WOW! In Gratitude.

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

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

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

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

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

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

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

Luck…it is what it is.

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

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

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

The Grace of Mental Illness

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

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

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

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

and then...

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

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

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

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

The First Time

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

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

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

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

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

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

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

My Two Cents and my Own Casserole

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

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

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

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

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

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

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

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

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