Well, it is time to leave another year behind. In so many ways this has been a year I do not want to forget. I have learned a lot this year. Top on my gratitude list for 2014 is that there was not one suicide attempt. My prayer is that those are a thing of the past. No mental hospitalizations and no 5150's. The family has found new hope and support through a church community that the children chose and feel very accepted and committed to be apart. We have had ups and downs and all arounds with each kid as the grow through adolescence. Overall I am extremely proud of my kids as they have grown, chosen to overcome obstacles by bravery, compassion and strength.
We now have Mickey, Lexi's service dog, with us and he is a spiritual appendage to my son that gives him strength he didn't know he had. Mickey makes all of us smile and when the intense storms blow through, Mickey intuitively hangs on and helps wherever he is able. He is a true member of our family. Up there near the top of my gratitude list! My son smiles on a regular bases now...I didn't know his face worked that way! What a beautiful smile he has!
Both kids have been successful at public high school. This has not been without some great life lessons for each of them but the biggest lesson is to keep showing up and get the work done. Isn't that a hard one for the grown ups as well. Knowing their struggles, my heart bursts with pride watching them persevere.
I have been told by some that I am different now. Taking stock on time and place I would have to agree. I started law school in 2011 and my son was young, mental illness had not triggered, my daughter was finishing 5th grade. I had a different perspective on life and my part in it. Today, I understand more about how little I can control and how strong I really am. I also have learned that most people, well intended, have opinions that they know very little about. Most opinions turn into judgments and those judgments are isolating and stigmatizing. My bruises from this realization are healing but I no longer dance around the straight up. Maya Angelo said that people will show you who they really are...believe them. I do.
I also have seen who I really am...believe me. I am loving, compassionate and enduring. My loyalty is direct and steadfast but my tolerance for misinformation, ignorance, judgments and stigmatization is gone. Allowing those things to befuddle me only is a waste of time and energy of which I have little to spare. I am more direct now and to the point. Whether others understand or not I know that I have hit places of pain I could never have imagined and kept breathing. I white knuckle hope and prayer that very few could ever understand sometimes making it one minute at a time, one day at a time and hold outs for a productive and healthy future for my children. I could never ever explain that to anyone and, for the most part, have stopped trying.
Somehow the resolve in it all keeps me going. The questions have faded, the shock has faded, the search for a fix or a cure has faded and the acceptance of faith gets me out of bed in the morning, keeps me breathing and gives me strength to weather the storms, the good days and the future.
2015 holds challenges ahead. I will keep praying that my son's mental illness will not degenerate and I promise to feel kicked in the gut every time i notice or am directed to see it's worsening. I promise to celebrate every good joke, every accomplishment and kindness. I promise to find success in every day because sometimes just surviving the day is worth celebrating. I promise to be fortified and strengthened in gratitude by the angels in our life who fortify us with their kindness, encouragement, faith and love. I promise to keep reaching for grace no matter how frequent I fall short.
Personally, graduating from law school feels surreal and mind blowing. I promise to celebrate it with shock and wonder at myself at the end of April. I promise to cry an complain and stomp my feet as I train for the marathon of the bar exam. Self doubt and fear will be my enemy and I promise to scream loudly in their faces, even when they are in the mirror. I promise to give everything I have inside to pass that bar exam in July. I know that I was called here, pulled here and that same source, calling, pull will drag me through victorious eventually. I promise to be grateful for every prayer, positive thought, offer of forgiveness and patience and blessing that comes my way. I also promise to ignore anybody else's doubt, negative statements, fear and foe to my success.
Standing on the lessons of 2014 I move forward, stronger, ready to take on what may come, what storms may blow, what challenges lay ahead. I will be less social in my bar preparation, I will be more stressed, I will be a little uglier and my house will be a fright. My kids will be neglected and I will be less groomed then my mother would hope and the most I can say is I will try not to smell or offend but that might be the most of it. Those who hang on to our friendship through my neglect and intensity of 2015 are saints and those who let go are practical. I am grateful for it all and look forward to a year from now when I can put it all behind me and stand on the lessons of 2015 with grace and honor. Hope to see you there.
Wednesday, December 31, 2014
Thursday, December 4, 2014
Denial and Faith
Such an over used concept, "denial" and always categorized as something that we do NOT want to use...denial is baaaaaad. Is it? I beg to differ.
Looking at it from the perspective of my son for a minute, although I would never be so bold to say I speak for him without his permission, I do not. I speak from the perspective of his mother watching him with pride. Although my son crashed and burned BAD his first attempt at public high school and his mental illness triggered on top of his significant challenges with autistic spectrum disorder he expressed his desire at the end of last school year to try public high school again. Yes, of course I was terrified out of my mind. Nobody will ever understand what we went through in order to pull him through the last two years...a move, homeschooling while working and going to school myself, sleepless nights, hospital stays, ER, baptism by fire of the mental health system and so much more. But what can you do when your kid says he wants to try it again...you have GOT to let them try. When I asked him his reason, he wanted to try more normalcy.
Here is my friend denial in the open. I have spent a year and a half under the counsel of his psychiatrist trying to break me down and tell me "he is not normal...his normal got hit by a truck and is now dead...he is mentally ill and my old sense of normal will never return." That was a punch that took some recovery. I mean, through his autism diagnosis I was told to try to teach him to fit in to "normal" and he has to learn to keep up with the real world and the neuro-typicals. Once the mental illness triggered I was told to stop trying to help him fit in to "normal" and instead just try to help him find happiness. I felt like one of those looney toon cartoon characters that shake their head so hard trying to find sense in it all that a weird eydiddyaydiddy noise comes out.
So, the boy started public high school again, IEP in place, all on board, fingers crossed and surrounded by prayers so hard my knees are bruised. He has had some major ups and downs. Bumps in the road that we slammed in to so hard we saw stars. At one point though, he chose to capitalize on denial. He said to me, "I don't have a single friend and I don't understand anybody at that school but I have decided to care anyway." He decided to care enough to get up and do it every morning, no matter what mood hits him, no matter how anxious he is, no matter if hallucinations trigger or not, no matter if he gets manic in the middle of a class and can not stop laughing for hours, no matter if he becomes so depressed that he can barely breathe, no matter WHAT he is going to care and get up and go the next day and the next. No matter how hard it is, he convinces himself it is worth getting up the next day and trying again. If that isn't using denial and faith together like siamese twins on a hot date I don't know what is! Maybe tomorrow will be better. Maybe there won't be as much chaos or anxiety. Maybe tomorrow he will understand a fellow teen long enough to make a friend.
Then there is my own personal relationship with denial. Mine is a little more seductive. I've been given the cold hard facts from the psych doc. Yep, those are the kick-in-the-gut facts that make me stagger for a day or two. Once I catch my breath I get seduced in to denial all over again. Maybe it won't get worse. Maybe he will be ok. Maybe he will make a friend today. Maybe he is not as odd as his sister describes him to be. Maybe we are in a weird enough small town that he will be fully accepted and it will all be ok. maybe it will all be ok. Maybe he will not need to go up on his meds. Maybe he can beat his mental illness and overcome the autism like a superhero. Maybe he will be able to wake himself up. Maybe his moods will stabilize. Maybe he won't damage anymore property. Maybe he will grow out of his anxieties. Maybe he won't hallucinate again. Maybe it will all be ok. Maybe it is all okay now and all the bad stuff is in the past.
Then the school calls. Denial bubble busted by the kick-in-the-gut cold hard facts. "No, there has been no change in his meds and I'm sorry if he is disturbing people or being a disruption". "Yes, he is incredibly intelligent Ms. Teacher and I know he could be Acing all his classes but the fact that he shows up every day is in his own right a form of Acing all his classes so back the TRUCK off". The moment at the psych doc when you get some more cold hard facts...he is getting older, is he safe to drive, is he ever going to be independent, is he going to be able to fulfill his dream of being an auto tech. Such a down graded dream from the boy I once knew and yet my friend denial has asked me to grab on to that dream with both hands and hold on.
Denial keeps me going, keeps my boy going. I've heard the phrase "denial ain't just a river in Egypt" but you know what, I build a boat for my denial river and sail on it every day. The cold hard facts may bust a hole in it but we bail and bail and patch the holes and keep going. Catch the wind where we can and ride out the quiet times. God Bless Denial!!!! Amen.
Looking at it from the perspective of my son for a minute, although I would never be so bold to say I speak for him without his permission, I do not. I speak from the perspective of his mother watching him with pride. Although my son crashed and burned BAD his first attempt at public high school and his mental illness triggered on top of his significant challenges with autistic spectrum disorder he expressed his desire at the end of last school year to try public high school again. Yes, of course I was terrified out of my mind. Nobody will ever understand what we went through in order to pull him through the last two years...a move, homeschooling while working and going to school myself, sleepless nights, hospital stays, ER, baptism by fire of the mental health system and so much more. But what can you do when your kid says he wants to try it again...you have GOT to let them try. When I asked him his reason, he wanted to try more normalcy.
Here is my friend denial in the open. I have spent a year and a half under the counsel of his psychiatrist trying to break me down and tell me "he is not normal...his normal got hit by a truck and is now dead...he is mentally ill and my old sense of normal will never return." That was a punch that took some recovery. I mean, through his autism diagnosis I was told to try to teach him to fit in to "normal" and he has to learn to keep up with the real world and the neuro-typicals. Once the mental illness triggered I was told to stop trying to help him fit in to "normal" and instead just try to help him find happiness. I felt like one of those looney toon cartoon characters that shake their head so hard trying to find sense in it all that a weird eydiddyaydiddy noise comes out.
So, the boy started public high school again, IEP in place, all on board, fingers crossed and surrounded by prayers so hard my knees are bruised. He has had some major ups and downs. Bumps in the road that we slammed in to so hard we saw stars. At one point though, he chose to capitalize on denial. He said to me, "I don't have a single friend and I don't understand anybody at that school but I have decided to care anyway." He decided to care enough to get up and do it every morning, no matter what mood hits him, no matter how anxious he is, no matter if hallucinations trigger or not, no matter if he gets manic in the middle of a class and can not stop laughing for hours, no matter if he becomes so depressed that he can barely breathe, no matter WHAT he is going to care and get up and go the next day and the next. No matter how hard it is, he convinces himself it is worth getting up the next day and trying again. If that isn't using denial and faith together like siamese twins on a hot date I don't know what is! Maybe tomorrow will be better. Maybe there won't be as much chaos or anxiety. Maybe tomorrow he will understand a fellow teen long enough to make a friend.
Then there is my own personal relationship with denial. Mine is a little more seductive. I've been given the cold hard facts from the psych doc. Yep, those are the kick-in-the-gut facts that make me stagger for a day or two. Once I catch my breath I get seduced in to denial all over again. Maybe it won't get worse. Maybe he will be ok. Maybe he will make a friend today. Maybe he is not as odd as his sister describes him to be. Maybe we are in a weird enough small town that he will be fully accepted and it will all be ok. maybe it will all be ok. Maybe he will not need to go up on his meds. Maybe he can beat his mental illness and overcome the autism like a superhero. Maybe he will be able to wake himself up. Maybe his moods will stabilize. Maybe he won't damage anymore property. Maybe he will grow out of his anxieties. Maybe he won't hallucinate again. Maybe it will all be ok. Maybe it is all okay now and all the bad stuff is in the past.
Then the school calls. Denial bubble busted by the kick-in-the-gut cold hard facts. "No, there has been no change in his meds and I'm sorry if he is disturbing people or being a disruption". "Yes, he is incredibly intelligent Ms. Teacher and I know he could be Acing all his classes but the fact that he shows up every day is in his own right a form of Acing all his classes so back the TRUCK off". The moment at the psych doc when you get some more cold hard facts...he is getting older, is he safe to drive, is he ever going to be independent, is he going to be able to fulfill his dream of being an auto tech. Such a down graded dream from the boy I once knew and yet my friend denial has asked me to grab on to that dream with both hands and hold on.
Denial keeps me going, keeps my boy going. I've heard the phrase "denial ain't just a river in Egypt" but you know what, I build a boat for my denial river and sail on it every day. The cold hard facts may bust a hole in it but we bail and bail and patch the holes and keep going. Catch the wind where we can and ride out the quiet times. God Bless Denial!!!! Amen.
Friday, November 21, 2014
Damnit God, lay off my kid!
I am well aware that it is the time of year to be thankful. I am thankful for so much and I tell God that every day. I am thankful that it has been over a year since Lexi's last suicide attempt. I am thankful that it is just a year ago today that I had picked Lexi up from his very last mental hospital stay. I am grateful that over the last year we were able to raise enough money to get his service dog and that Mickey gives him a reason to live and is helping him make it through his day in ways I could never have foreseen. I am grateful that Lexi is back at public school-I never was all that great of a home school teacher-Lexi said I was way too tough on him. LOL I am grateful that Lexi, for the most part is making it through each day at public school through his ups and downs and anxieties and social autistic spectrum warfare. I am grateful for the other stuff too, roof over head, food to eat, family who cares, work, awesome clients that have become friends if not family. I can go on and on on my gratitude list. I am also grateful because I think God can handle me being ticked off.
I have heard since Lexi was diagnosed that adolescence is the toughest time for those with ASD. Many people from lay people to experts warned me. What they didn't know, nor could they have known, is that Lexi's genetics had a mental illness time bomb waiting to go off. That time bomb was going to try to kill him and soak into his soul like a degenerating toxin of thoughts. I call mental illness a cancer of the thoughts because it is a legitimate medical and physical illness that needs to be treated as such. There is no more will power involved in fighting mental illness then there is in fighting cancer. It isn't an attitude problem or something we grow out of like an allergy, it is a true illness. It CAN go into remission but it is always there, lurking and waiting for your moment of weakness to attack the brain.
According to Lexi's doctor his form of mental illness is one of the worst she has ever seen because of how young it hit him and how hard and fast it hit him. Her projection for him is that we probably can not count on him stabilizing until he is in his mid 20's if not later. The progression of the disease will slow down once he is in his 20's but it will still progress. Lexi and I work very hard to prove her wrong. It isn't necessarily being stubborn, we just know we proved a LOT of people wrong about his autism and his abilities as they were once projected when he was a very young age. I take comfort in my son's ability to prove doctors wrong like a warm cup of denial tea that I sip on and flavor with every teeny tiny success. Successes I am grateful for-see list above. Then there are the moments when reality kicks me in the stomach.
It can be small like a comment from Lexi, I was walking around campus today and couldn't stop laughing, have I taken all my meds lately? It can be moment when he hits lows that he questions if his meds are working at all. It can be phone calls front he school questioning if his meds have changed or if something else might be going on at home that could be causing this or that as points of concern. The suckiest answer is "no, meds are stable and nothing is going on at home." This is when we begin the thought process of, his mental illness is progressing and it is time to up or change the meds. *kick in stomach* Here's the thing, he has only been stable for about 10 weeks. Come on! Give the kid a freakin' break! He's cracking through his meds?
Here is my prayer...Lay off of my boy, God! He's one of the good ones. He has struggled through all that you have dished out at him and remains one of the good ones. He is beautiful, compassionate, intelligent and just good to his core and God you keep shoveling more and more struggle on to him. He gets up every day and battles his social deficit and anxiety, the frightful ambiguity and peculiar world of other people. He battles memory problems from the mental illness, uncontrollable mood swings that terrify him because he feels so out of control. He struggles with reality from anxiety provoked hallucinations that have tried at times to kill him or entice him into psychotic breaks. Through it all, God he remains now hopeful of a full and prosperous life, he chooses to search for the truth of God and the light in the world. Why do you keep making him or letting him get worse? That is enough God! This is enough for him. LAY OFF! Damnit God, lay off my kid!
My heart screams this as I make the phone call to his psychiatrist letting her know that we need to meet soon to discuss his meds. I am reminded that he is on maximum doses of some seriously strong medications and that it is not good if his illness has progressed past these medications. I pray out to God, who I know is big enough to handle my anger, time to lay off my boy. Let him be healthy, God. Please, just let him be healthy. He has so much good to offer. So much light to shine. I hope my prayers are heard, answered and fulfilled with every cell in my body and every intangible fiber of my soul. I am grateful that God can handle that I am ticked off. I hope I never have to understand fully what it is like to have a child with cancer or some other form of irreversible deadly disease but I imagine they get pretty ticked off at God too. How hard it is to watch our children suffer and struggle. In my humble opinion, dear God, we've ha enough. Amen.
I have heard since Lexi was diagnosed that adolescence is the toughest time for those with ASD. Many people from lay people to experts warned me. What they didn't know, nor could they have known, is that Lexi's genetics had a mental illness time bomb waiting to go off. That time bomb was going to try to kill him and soak into his soul like a degenerating toxin of thoughts. I call mental illness a cancer of the thoughts because it is a legitimate medical and physical illness that needs to be treated as such. There is no more will power involved in fighting mental illness then there is in fighting cancer. It isn't an attitude problem or something we grow out of like an allergy, it is a true illness. It CAN go into remission but it is always there, lurking and waiting for your moment of weakness to attack the brain.
According to Lexi's doctor his form of mental illness is one of the worst she has ever seen because of how young it hit him and how hard and fast it hit him. Her projection for him is that we probably can not count on him stabilizing until he is in his mid 20's if not later. The progression of the disease will slow down once he is in his 20's but it will still progress. Lexi and I work very hard to prove her wrong. It isn't necessarily being stubborn, we just know we proved a LOT of people wrong about his autism and his abilities as they were once projected when he was a very young age. I take comfort in my son's ability to prove doctors wrong like a warm cup of denial tea that I sip on and flavor with every teeny tiny success. Successes I am grateful for-see list above. Then there are the moments when reality kicks me in the stomach.
It can be small like a comment from Lexi, I was walking around campus today and couldn't stop laughing, have I taken all my meds lately? It can be moment when he hits lows that he questions if his meds are working at all. It can be phone calls front he school questioning if his meds have changed or if something else might be going on at home that could be causing this or that as points of concern. The suckiest answer is "no, meds are stable and nothing is going on at home." This is when we begin the thought process of, his mental illness is progressing and it is time to up or change the meds. *kick in stomach* Here's the thing, he has only been stable for about 10 weeks. Come on! Give the kid a freakin' break! He's cracking through his meds?
Here is my prayer...Lay off of my boy, God! He's one of the good ones. He has struggled through all that you have dished out at him and remains one of the good ones. He is beautiful, compassionate, intelligent and just good to his core and God you keep shoveling more and more struggle on to him. He gets up every day and battles his social deficit and anxiety, the frightful ambiguity and peculiar world of other people. He battles memory problems from the mental illness, uncontrollable mood swings that terrify him because he feels so out of control. He struggles with reality from anxiety provoked hallucinations that have tried at times to kill him or entice him into psychotic breaks. Through it all, God he remains now hopeful of a full and prosperous life, he chooses to search for the truth of God and the light in the world. Why do you keep making him or letting him get worse? That is enough God! This is enough for him. LAY OFF! Damnit God, lay off my kid!
My heart screams this as I make the phone call to his psychiatrist letting her know that we need to meet soon to discuss his meds. I am reminded that he is on maximum doses of some seriously strong medications and that it is not good if his illness has progressed past these medications. I pray out to God, who I know is big enough to handle my anger, time to lay off my boy. Let him be healthy, God. Please, just let him be healthy. He has so much good to offer. So much light to shine. I hope my prayers are heard, answered and fulfilled with every cell in my body and every intangible fiber of my soul. I am grateful that God can handle that I am ticked off. I hope I never have to understand fully what it is like to have a child with cancer or some other form of irreversible deadly disease but I imagine they get pretty ticked off at God too. How hard it is to watch our children suffer and struggle. In my humble opinion, dear God, we've ha enough. Amen.
Friday, September 5, 2014
Small Victories
It may seem stupid to some but today I am just in shock. It is hard to explain why I am in shock but it is because I passed. I didn't know that I could pass. I hoped I would and I worked hard but I didn't know I could.
You see, so much has happened. I have spent so much time in the chaos of my son's disabilities as his mental illness triggered over a year ago and the suicide attempts began and his craziness blew up like a bug bomb in the kitchen pantry. I have spent so much time throwing out what has been damaged and sorting through the wreckage as I try to keep moving forward, keep him alive, functioning and happy. I have been trying to keep my daughter as damage free as possible while also helping her stay in our new reality. All the while I have been continuing my studies part time in law school.
Most definitely my law school experienced changed as all of this exploded into every aspect of my life. My support network practically disappeared but other types of support came out of the shadows. From clients who deal with similar loved ones feeling free to tell their version of crazy and understand mine, a fairy dog mother who occasionally drops food, clothing or pet supplies at our door and keeps us going with her angelic kindness, a Mom who has risen up to be one of my only true sounding walls in the Universe and a new church community. As isolating as crazy has been it has also been incredibly revealing. Many fell away all of a sudden, many opinions and judgments were launched at us feeling like hand grenades some days or even land mines we need to tip toe around. The landscape in crazy town is very different. There is no way to know what each day will bring and for that matter, the world here can change on a dime and all we can do is be prepared to stay calm, know where our shelters are in case the storm gets too out of control.
And yet, one of my sanity keepers has been law school. I think if I did not have law school during this sleep deprived crazy town shake up I would probably have been swallowed in self pity, overwhelmed, grief. I had something demanding my attention, pulling me out of my head, my grief, my shock and forcing me to take a breath and change my focus. Sometimes I physically had to hold my head in order to focus because I felt like my thoughts were on the verge of implosion...maybe they were. I stopped having faith that I was a good student but I was a student who had tenacity and persevered. Now, as I round the curve in my last year of law school it is time to look at the bar exam. One of the steps to taking the bar exam is the national legal ethics exam called the MPRE.
The timing ont he MPRE couldn't have been more crappy. As the service dog organization I had contracted with and the service dog my son had pinned his hopes and life too crumbled and the chaos of that mess became hours daily of emails, phone calls and worry the MPRE loomed in front of me and immediately following the date of that exam were my final exams for the trimester I was currently attending. I insisted upon this date though because if, by chance, I did not pass this exam I would have yet one more try at it before I was too deep in the muck of bar exam prep and I wanted that cushion. I launched into my studies for this exam through all the chaos, the Crazytown storms and so on. The form of questions for this exam are my mental nemesis and my score was wretched. One day I would have a passing score on the practice exams and the next day I would bomb it. I read, practiced, studied, listened to lectures, podcasts, anything and everything to help me.
I took the exam with accommodations for my visual impairment which threw me for a bit. I listened to a cd of the questions and the answer choices and then circled my answer. It was truly the first time I learned to close my eyes and just listen. I have always tried to read and listen but with the degeneration of my vision the two together were creating almost a static in my brain. The questions were hard, confusing and so many of them I just laughed at and circled an answer in a "whatever!!!!" type of thought process thinking as I walked out of the exam...I have no flippin' idea how I did on that. There were so few question I actually thought I understood and was clear on the answer choice. I was pretty sure that my brain was now completely destroyed and that Crazytown had rotted my potential. I thought I had no chance in hell at passing the bar and finishing law school was really just an exercise in stubbornness. I had resigned to the thought of if I passed it would be by the grace of God and if I fail I will continue to take it and the bar until I pass just out of spite-just so cCazytown will not win. I walked out and let it go.
This morning I got my score on the MPRE and I not only passed, I ACED it.
Ok...I got my kids out the door to school and all of a sudden started crying. The last year and a half flashed before my eyes, the pain, the fear, the ER, the psychiatrist appointments and the constant bad news, the torture in my boy and the fear in my girl and my feeling of utter helplessness and confusion. I couldn't breathe for a few minutes as all of it swarmed my brain and I stopped on one point of truth...I passed. Through all of that I persevered and did well? I may still have redeeming qualities in me yet. I might be more then all of this pain. I might be more then parenting successes and failures, crazy kids, botched service dog organizations and I might actually be ok. I ACED it. By the grace of God I ACED it.
This is exactly what I needed as I move towards the bar exam and towards graduating and wondering what in the world am I doing, visually impaired, mayor of Crazytown and not even able to find time to do my hair or wear make up. I might be ok. To quote a song I grew up believing and admired, "she might just make it after all." Unlike Mary Richards I do not want a husband...I want a life. I want happiness and to help people and to affect change for the better in my world. Thank you God for giving me this nudge...this gift. I ACED it. By the grace of God, I ACED it. By the grace of God I go forward. I celebrate my small victory.
You see, so much has happened. I have spent so much time in the chaos of my son's disabilities as his mental illness triggered over a year ago and the suicide attempts began and his craziness blew up like a bug bomb in the kitchen pantry. I have spent so much time throwing out what has been damaged and sorting through the wreckage as I try to keep moving forward, keep him alive, functioning and happy. I have been trying to keep my daughter as damage free as possible while also helping her stay in our new reality. All the while I have been continuing my studies part time in law school.
Most definitely my law school experienced changed as all of this exploded into every aspect of my life. My support network practically disappeared but other types of support came out of the shadows. From clients who deal with similar loved ones feeling free to tell their version of crazy and understand mine, a fairy dog mother who occasionally drops food, clothing or pet supplies at our door and keeps us going with her angelic kindness, a Mom who has risen up to be one of my only true sounding walls in the Universe and a new church community. As isolating as crazy has been it has also been incredibly revealing. Many fell away all of a sudden, many opinions and judgments were launched at us feeling like hand grenades some days or even land mines we need to tip toe around. The landscape in crazy town is very different. There is no way to know what each day will bring and for that matter, the world here can change on a dime and all we can do is be prepared to stay calm, know where our shelters are in case the storm gets too out of control.
And yet, one of my sanity keepers has been law school. I think if I did not have law school during this sleep deprived crazy town shake up I would probably have been swallowed in self pity, overwhelmed, grief. I had something demanding my attention, pulling me out of my head, my grief, my shock and forcing me to take a breath and change my focus. Sometimes I physically had to hold my head in order to focus because I felt like my thoughts were on the verge of implosion...maybe they were. I stopped having faith that I was a good student but I was a student who had tenacity and persevered. Now, as I round the curve in my last year of law school it is time to look at the bar exam. One of the steps to taking the bar exam is the national legal ethics exam called the MPRE.
The timing ont he MPRE couldn't have been more crappy. As the service dog organization I had contracted with and the service dog my son had pinned his hopes and life too crumbled and the chaos of that mess became hours daily of emails, phone calls and worry the MPRE loomed in front of me and immediately following the date of that exam were my final exams for the trimester I was currently attending. I insisted upon this date though because if, by chance, I did not pass this exam I would have yet one more try at it before I was too deep in the muck of bar exam prep and I wanted that cushion. I launched into my studies for this exam through all the chaos, the Crazytown storms and so on. The form of questions for this exam are my mental nemesis and my score was wretched. One day I would have a passing score on the practice exams and the next day I would bomb it. I read, practiced, studied, listened to lectures, podcasts, anything and everything to help me.
I took the exam with accommodations for my visual impairment which threw me for a bit. I listened to a cd of the questions and the answer choices and then circled my answer. It was truly the first time I learned to close my eyes and just listen. I have always tried to read and listen but with the degeneration of my vision the two together were creating almost a static in my brain. The questions were hard, confusing and so many of them I just laughed at and circled an answer in a "whatever!!!!" type of thought process thinking as I walked out of the exam...I have no flippin' idea how I did on that. There were so few question I actually thought I understood and was clear on the answer choice. I was pretty sure that my brain was now completely destroyed and that Crazytown had rotted my potential. I thought I had no chance in hell at passing the bar and finishing law school was really just an exercise in stubbornness. I had resigned to the thought of if I passed it would be by the grace of God and if I fail I will continue to take it and the bar until I pass just out of spite-just so cCazytown will not win. I walked out and let it go.
This morning I got my score on the MPRE and I not only passed, I ACED it.
Ok...I got my kids out the door to school and all of a sudden started crying. The last year and a half flashed before my eyes, the pain, the fear, the ER, the psychiatrist appointments and the constant bad news, the torture in my boy and the fear in my girl and my feeling of utter helplessness and confusion. I couldn't breathe for a few minutes as all of it swarmed my brain and I stopped on one point of truth...I passed. Through all of that I persevered and did well? I may still have redeeming qualities in me yet. I might be more then all of this pain. I might be more then parenting successes and failures, crazy kids, botched service dog organizations and I might actually be ok. I ACED it. By the grace of God I ACED it.
This is exactly what I needed as I move towards the bar exam and towards graduating and wondering what in the world am I doing, visually impaired, mayor of Crazytown and not even able to find time to do my hair or wear make up. I might be ok. To quote a song I grew up believing and admired, "she might just make it after all." Unlike Mary Richards I do not want a husband...I want a life. I want happiness and to help people and to affect change for the better in my world. Thank you God for giving me this nudge...this gift. I ACED it. By the grace of God, I ACED it. By the grace of God I go forward. I celebrate my small victory.
Sunday, July 27, 2014
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.
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.
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.
Sunday, May 18, 2014
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.
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.
Sunday, April 6, 2014
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.
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.
Saturday, March 15, 2014
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.
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.
Friday, February 14, 2014
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.
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.
Thursday, February 13, 2014
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.
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.
Monday, January 27, 2014
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.
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.
Saturday, January 18, 2014
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!
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!
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