So let's talk the real deal about the holidays. I am taking this "Family to Family" class put on by "NAMI" the National Alliance on Mental Illness and the class is made up of over 20 people who have loved ones with some form of diagnosed or undiagnosed mental illness. We broke up into groups a couple of weeks ago based on our relationship to a mentally ill loved one. The group of parents had about six people in it. We ranged from the 70's down tot he 30's in age and consequently had children ranging from teens to 40's in age. We were asked several questions but one of them was "How does having a loved one with mental illness affect your family?" and what surprised me was the over all consensus of the group that it has torn the family apart. Half of the parents spend holidays completely alone because they can not have their mentally ill child with the rest of their family. Many siblings of the mentally ill will not visit the parents if they are care taking for their mentally ill loved one because it is just too hard to be around. What a realization of overall sadness we had for a moment.
It almost feels like somewhere we make a choice, to love our mentally ill family member at the cost of the other family and friends. Whether that is an outsider's reality or not, it seems to be the way it feels to the parent. Myself, I have one family member, from a distance without actually asking details, who has chosen her fear over what she has perceived my sons mental illness to be over her love for him and will not be around us anymore. Another family member I have wiped my hands of due to my disappointment and frustration in the lack of care, thought or empathy. I do not have time to make others okay with their self centered ideology. My own best friend has become distant to me and my family because she can not understand. Other close and dear friends have stopped calling or emailing or visiting because it is just too hard, our lives are too intense and the ups and downs are more treacherous then the roller coaster rides at the local amusement park. "Please keep your hands and arms inside the crazy for your own protection".
The truth is that unless you are in it, day to day, moment to moment, it can not be understood. It was sort of that way with autism for so many years. Nobody could believe the crazy that goes on with autism. The rage tantrums, the weird stemming, the social awkwardness and blunt statements that offend people you care about. Yes, there were countless times I had to tell my son it was not okay to tell people that their perfume "stinks" etc. The autism and it's own brand of ugly grew a level of acceptance among my family and friends though and admittedly, it wasn't for the weak at heart, but it was not shameful. Mental illness is much scarier and holds more shame and gets upgraded to f'ugly.
The crazy mania leads to impulsivity that is just weird and sometimes dangerous. The darkness that over takes a person with serious bipolar is deafening. It sucks away all light around it. The fact that these extremes can be sudden and unforeseeable are uncomfortable, scary and exhausting. Then there is the delusional thinking. I think we have all had this form of thinking in one way or another either through our own typical acute depressions or our elation during certain moments of celebration or even the crazy thoughts that can come from sleep deprivation. The thoughts are not right, out of whack with reality. Nobody knows how to handle this situation.
What if your loved one hallucinates, hears voices, sees demons or people or objects? Can you imagine the discomfort around family when all of a sudden the loved one yells out, "Whoa...what in the heck was that?!?!" and nobody else saw anything or heard anything and everybody is looking around. Or if your crazy loved one is aware enough to know that delusions and hallucinations are embarrassing and would scare away those she loved or might scare people. Sometimes, the hallucinations or voices are so scary to the mentally ill that they are afraid to talk about them to anyone, they can even come with a level of paranoia or fear of punishment if others might be told. Let's try bringing all this to Thanks Giving shall we?
But as the parent, we see it, feel it, hear it...maybe not directly but on their faces, in our discussions, as we try to lift them from their darkness or tether them during their mania. We help them battle their demons and quiet the voices. It is my child who has mental illness and it is my commitment to him that I will love him and care for him through his darkness, his delusions and no matter what his voices might tell him. It is my heart ache that so few can help me love him through it too.
I have described mental illness as if it is a cancer of the thoughts. Medications can be like chemotherapy and bring recovery but it can be an intensive toxic process. Sometimes one ravaged with cancer may end up with physical deformities or the chemo therapy may change them somehow, even hair growing back a different color or texture. When someone has cancer, people offer to help...they bring casseroles, and give rides to doctors appointments or come and sit with the ill and comfort them, read to them, pray with them. Nobody brings casseroles to autism flare ups or psychotic breaks. Nobody offers to give rides or come pray with the family. Other family members get anxious about their visits and worried if they have reached out at all or even invited the crazy to join. It isn't that I don't understand and even appreciate other's discomfort, fear, concerns. It just makes me sad.
I remember once someone was telling me a story of someone they knew who had an autistic child. They brought that child to church and the child had a neurological storm in church and began screaming and needed to be restrained and brought out of church. This person told me that it was just wrong of that family to have come to church and bothered everyone with that poor child. "How could they be so thoughtless to the rest of the congregation?". Oh how I would love to bring my son to HER church NOW!!! *a moment of self amusement as I consider the possibilities*
I am sad to know that at least 3 people who sat at my parent table in the NAMI class will be spending Thanksgiving alone. I am sad to know that those who are surrounded by darkness and demons and fear need more then ever to have their loved ones simply surround them with light and love and brave the intensity enough to be physically close and spend time with them, talk to them, share with them a space and time. That those of us who care for our loved ones feel separated, isolated by our love for crazy.
I know that my son is beautiful, autistic, crazy and intense and I am grateful that most of the time, if I take the time, I can find him through his thought cancer and his neurological storms and his darkness and I will never stop loving him. I will show it in any way I can. That is what family does for one another. That is what a mother does. That is what I do and who I am. No matter what kind of a day he is having on Thanksgiving this year, I will be with him. If we can muster up the strength, the neurological storms are calm enough and the thought cancer has not ravaged him too much that day, we will try to be with some of our extended family. And we will be grateful.
A NOTE: I am no longer tolerant of statements like "do you think he is making all of this up for attention". I have seen my son cowering in corners from his thoughts in his head. I have seen my son bleed for five days due to his efforts to try to release the pain he feels inside. I have taken him to several doctors and specialists who know WAY more then me and swear that his mental illness is real and intense and significant. In the same way that others did not see the tantrums of autism and feel the pain of restraining him when he was younger as he screamed through his neurological storms, his autism was and is real and his mental illness is just as real if not more devastating. Because you do not see it and experience it does not give you the right to doubt it. You do not need to understand it to accept it without question, you just need to have trust and faith in our process and journey. Please do not express this level of ignorance to those you meet with mental illness. It is demeaning and minimizes their reality and struggles.
A SECOND NOTE: For the statement, "I don't know what to do or how to help" prayer is wonderful, a card of thoughtfulness, an email, etc can bring light on a dark day for my son, myself and my daughter. Come visit and hang out, play a game, take a kid to a movie, bring a casserole, a cup of coffee or tea, a hug. Showing you care is priceless and invaluable. If you have a loved one with ANY form of illness, physical, mental, neurological please show you care. All of those who have donated to my son's fundraiser for his autism service dog have brought light and hope...it has been a wonderful way to show you care. I mean it when I say that no donation is too small because it ALL means that someone cares and to us that care is HUGE!!!! Thank you for all who care in whatever way you are able, prayer, donations, reaching out, coming over and helping our family, offering rides, offering hugs and so on. THANK YOU!
Friday, November 22, 2013
Monday, November 11, 2013
The Mental Health System and the Process of a Psych Hold
I write this as an honest look into what someone with a child with mental illness must go through in order to get help. The good, the bad and the ugly of how to get a kid help.
The night started out just fine, all were happy in the home and tired. Medications were taken at the appropriate times and my children, sometimes nick-named "The Bickerson's" were actually at peace and I had hope for a peaceful and easy Saturday night. Last week in the middle of the night we had a suicidal process stopped mid plan and I chose not to take my son to the emergency room. His psych doc asked why I had not brought him to the ER when he was so acutely suicidal and I told her of my huge frustration in the process.
My son gets to the ER and looks just fine, calm, compliant, polite and the mental health workers look at me like I am nuts to say he is suicidal. It is her insistence that his suicidal ideation is very serious and not to be taken lightly so she told me that if it happens again to tell the mental health worker that SHE was his doctor and that his diagnosis was very serious and his suicidal threats were to be taken at the highest level of intensity. She told me that if I needed to tell him that I want to speak to the psych doc on call and go over his head and worse comes to worse simply state that I am not leaving the hospital with my son, they are to keep him. Well, my hope was that I would not need to use these tips for better service but I was wrong.
I had just gotten comfy in my bed, feeling safe and happy enough to actually sleep in my bed fo the first time in a week instead of sleeping contorted on the couch to stay on hyper vigilant suicide watch. My bed felt so so good to stretch out and just sink in. Sure enough, as sleep began to take me over I hear the door to my son's room opened which always makes me nervous. I heard him come down the stairs and walk straight to my room. "What's up?"...he answered, "Mom, I want to die and I rpomised you I wouldn't but I don't want to live anymore and I can't control it." Good bye comfy bed, our five minutes together was precious and sad all at the same time.
I sat up and tried my best to distract him, think of hopeful thoughts, the potential service dog, his short films, his art work and poetry, his aspiration to have a job at a golf course driving golf carts. He said that none of it mattered and was all a waste because he was too much work and not worth any of it and he couldn't go on trying. After about a half an hour of my full blown efforts to distract and lighten the mood he continued to weep and stay in his deep darkness and I asked the million dollar question, "If I fell asleep tonight, could I trust you not to harm yourself in anyway?"...answer, "no." CRAP.
We agreed it was time to go the the ER. I hate that trip. In the middle of the night we gathered our things and head to the ER, in the dark and cold. We went in to the front desk and told them that he no longer wanted to live and they processed his insurance card, gave us his bracelet and we went back to triage. I pulled the triage nurse aside to tell her my son's form of Bipolar includes hallucinations and such and that I just wanted it on record in case it happens so that everyone would know how to treat him if he started talking to his demons or voices.
Upon this information, the doctor on call comes in and sits in front of my son and starts talking to him like he was a stray wild dog. "How are you feeling tonight?" he says in a soft high pitched tone. I looked at him like he was an idiot. "Are you feeling stressed tonight?". DUGH, would we be here if he wasn't??? "Are you hearing voices right now?" My son looked at him with disgust and said, "no" and rolled his eyes. I tried to clarify to the doctor that he doesn't hear them all the time, just on occasion and that he was not hear because he hears voices, he's here because he wants to die. He smiled at me like I was crazy too and said, "Ok, no problem, do you want some medicine to take the edge off of your stress tonight?". My son said he was fine and the doctor apparently frustrated and still looking for his sense of understanding left the room.
We were walked back to the back of the ER where the nurse and the doctor were mocking people who hear voices. They were discussing how funny it is that people say they hear this or that and that the only voice they should hear is the voice of God. I sat in the hallway for a second staring at them wondering how they could possibly be so insensitive or stupid and feeling grateful that my son did not hear them.
Next the nurse who was just engaged in mockery of my son's condition comes in and without looking at my son or myself grabs his arms and starts cleaning his fresh cuts. He's rolling his eyes and says, "you know these aren't that deep, they don't need to be stitched up." I answered, "We aren't here for the cuts on his arm, we are here because he doesn't want to live anymore." He sort of froze and finally looked at me and said, "Oh, really?" He looked at my son and said, "Is that true?" to which my son answered int he affirmative. Then comes another brilliant patronizing statement delivered almost with a sense of laughter to it, "You are a good looking guy with your whole life ahead of you, why would you not want to live anymore?" I wanted to kick him in the head but still haven't gotten around to taking those kick boxing classes that would have been so helpful at this moment.
He drew the blood and took a urine sample and then we wait for an hour for the results to come back. Once the results come back then the mental health worker can be called. Until then, I sit in an awful hard plastic chair and my son sits on a gurney and we wait. Finally, the doctor who still insists on speaking to my son like he is a lost dog comes in to tell us that all the tests were clean so now we will call the mental health worker to come assess him. I muster up a smile of gratitude for the forward mtion of the process and he leaves.
We have always had women mental health workers, even had one lady twice, she was nice, I liked her. Tonight we got our first guy. He looked like he was 19 but professed later to have a 20 year old kid so I'm not sure what he's doing to stay so young looking but he seriously looked like he walked otu of an abercrombe andFitch ad with his clothes and cologne. I pulled him aside when he arrive after waiting for him for an hour and told him what my psych doc told me to tell him. He said, "Oh, wow...okay, I understand." We walked back into the room with my son and he pulled out his paperwork and said, "So, what is better or worse then when you were here last time" I was a bit stunned, I had just explained the progression of my son's mental illness and the serious intensity of his suicidal actions and the concerns of his psychiatric doctor and he was comparing today to last time.
He asked all the questions on his form and then showed us his score sheet. No, seriously, there is a score sheet. It is apparently like a quiz in a magazine. You know those quizzes, the ones that tell you if you are compatible to an executive or a hippy or if you are supposed to vacation in a motor home or on a tropical island. He tells us that my son lost points on the suicide scale because he is not a 45 year old white male and the fact that he has such a great Mom. He showed us his arithmetic and declares that my son is borderline suicidal. I was speechless. Borderline suicidal. His chart said so. We only added up to borderline. Nothing I said to him mattered, only his happy arithmetic.
He then turned to me and said, "Do you think you could take him home and keep him safe tonight?" I was stunned at the question because it seemed so stupid. I gathered myself after a few seconds and said, "Do you think I would come to the ER in the middle of the night asking for help if I thought that I could do this at home? My son told me that he could not guarantee that he would stay safe if I fell asleep, does this not warrant help beyond myself?" He stuttered for a moment and said, "but you guys have made it through before, he seem quite calm and compliant, I'm not sure he would really benefit from a psych hold." Then he said the words that were most dangerous for him, "unless you are just too tired." WHAT?!?!?!
I stopped breathing for a minute and my eyes went blurry. He offered to fax the forms to the psych hospitals around and see if anyone would take him. He said he'd get back to us in a bit. He got up and walked away. My son laid back in his gurney and closed his eyes and I started plotting ways that I could learn kick boxing in five minutes or less. My adrenaline started to race and I was working up the strength to tell this idiot that I was not leaving the ER with my son that night when he announced that the psych hospital will take him. They were saving him a bed and they would process his paperwork. I remember hearing a long exhale leave my body.
Now, we have done this several times already and the 3am shift almost never processes the incoming paperwork, they wait for the 7am shift to come and in a dump it all on them. I told the mental health worker that I had a daughter asleep at home that I wanted to go check on and since i figured it would be several hours I would go home and come back. He warned me not to leave because it could be processed very quick. I went back to the room and waited for 45 minutes for him to come in and tell me that they will not be processing his paperwork until the next shift and it could be several hours. Um...yah.
My son was sound asleep. I asked if I could write out his medications so that they could make sure he would not miss any medicines-missing meds is very very bad these days. The doctor did a "tshtpft" sort of sound and gave me a paper and a pen and stormed off-to no other patients in the whole damned ER. I left dizzy and exhausted and drove home where I finally fell asleep around 5am only to be awoken at 7am to a nurse calling to find out what medications my son needed in the morning. We finally came to the conclusion that they did not have one of the medications so I needed to bring it. I went back to the ER with my son's meds to find a fantastic nurse on the morning shift. She was friendly, compassionate and sharp as a tack. We finally got everything together and my son's transport came for him only 11. 5 hours after entering the ER...our fastest process yet. We've been there up to 26 hours before.
The transport came and strapped him onto the gurney and rolled him away. Never feels good to watch that. I always get sick to my stomach. Parents are not allowed to take their kids directly to the psych hospital nor are we allowed to follow the transport to help get them checked in. I followed my son's transport until it headed in the opposite direction of my home. I then go home and wait for the psych hospital to call and ask about all his medications and basic info, even though it was all written down and clear. Four hours later, he was checked into the psych hospital and I could finally take a nap. I suppose this was an opportunity to google kick boxing techniques but I thought sleep might be more important in the long run.
The likelihood that they will keep him for the full 72 hour hold is minimal. He hates it there and knows what to say to the doctors and nurses to convince them that he is no longer suicidal. Because he went in on a Sunday morning and the staff on the weekend doesn't really make those decisions, I am pretty much guaranteed one day of peace but there is no telling what will happen on Monday. My hope is to have him stay in there for at least two days to give the new medicine more time to help him stabilize without me being on hyper vigilant 24/7 watch in order for my daughter and I to breathe out for a few minutes, my adrenal glands to come back from their afterlife for maybe a day and know that he will be relatively safe.
The psych hospital is not exactly the greatest place but it is the best we have. He has been uncomfortably harassed in violent and sexual ways by some of the other kids, Being on suicide watch means he has to sit in the lobby all day long except for when he goes to group therapy which is four times a day. All the kids in there remind me of characters from "Girl Interrupted" and I think they can teach him more harm then good sometimes. When he gets home, he will need to decompress a bit and eventually he will ask me all of his questions trying to make sense of what he saw and what he heard. I just pray that I will be able to put those pieces back together enough to help him get on to a safe and healthier track. No guarantees, ever.
The night started out just fine, all were happy in the home and tired. Medications were taken at the appropriate times and my children, sometimes nick-named "The Bickerson's" were actually at peace and I had hope for a peaceful and easy Saturday night. Last week in the middle of the night we had a suicidal process stopped mid plan and I chose not to take my son to the emergency room. His psych doc asked why I had not brought him to the ER when he was so acutely suicidal and I told her of my huge frustration in the process.
My son gets to the ER and looks just fine, calm, compliant, polite and the mental health workers look at me like I am nuts to say he is suicidal. It is her insistence that his suicidal ideation is very serious and not to be taken lightly so she told me that if it happens again to tell the mental health worker that SHE was his doctor and that his diagnosis was very serious and his suicidal threats were to be taken at the highest level of intensity. She told me that if I needed to tell him that I want to speak to the psych doc on call and go over his head and worse comes to worse simply state that I am not leaving the hospital with my son, they are to keep him. Well, my hope was that I would not need to use these tips for better service but I was wrong.
I had just gotten comfy in my bed, feeling safe and happy enough to actually sleep in my bed fo the first time in a week instead of sleeping contorted on the couch to stay on hyper vigilant suicide watch. My bed felt so so good to stretch out and just sink in. Sure enough, as sleep began to take me over I hear the door to my son's room opened which always makes me nervous. I heard him come down the stairs and walk straight to my room. "What's up?"...he answered, "Mom, I want to die and I rpomised you I wouldn't but I don't want to live anymore and I can't control it." Good bye comfy bed, our five minutes together was precious and sad all at the same time.
I sat up and tried my best to distract him, think of hopeful thoughts, the potential service dog, his short films, his art work and poetry, his aspiration to have a job at a golf course driving golf carts. He said that none of it mattered and was all a waste because he was too much work and not worth any of it and he couldn't go on trying. After about a half an hour of my full blown efforts to distract and lighten the mood he continued to weep and stay in his deep darkness and I asked the million dollar question, "If I fell asleep tonight, could I trust you not to harm yourself in anyway?"...answer, "no." CRAP.
We agreed it was time to go the the ER. I hate that trip. In the middle of the night we gathered our things and head to the ER, in the dark and cold. We went in to the front desk and told them that he no longer wanted to live and they processed his insurance card, gave us his bracelet and we went back to triage. I pulled the triage nurse aside to tell her my son's form of Bipolar includes hallucinations and such and that I just wanted it on record in case it happens so that everyone would know how to treat him if he started talking to his demons or voices.
Upon this information, the doctor on call comes in and sits in front of my son and starts talking to him like he was a stray wild dog. "How are you feeling tonight?" he says in a soft high pitched tone. I looked at him like he was an idiot. "Are you feeling stressed tonight?". DUGH, would we be here if he wasn't??? "Are you hearing voices right now?" My son looked at him with disgust and said, "no" and rolled his eyes. I tried to clarify to the doctor that he doesn't hear them all the time, just on occasion and that he was not hear because he hears voices, he's here because he wants to die. He smiled at me like I was crazy too and said, "Ok, no problem, do you want some medicine to take the edge off of your stress tonight?". My son said he was fine and the doctor apparently frustrated and still looking for his sense of understanding left the room.
We were walked back to the back of the ER where the nurse and the doctor were mocking people who hear voices. They were discussing how funny it is that people say they hear this or that and that the only voice they should hear is the voice of God. I sat in the hallway for a second staring at them wondering how they could possibly be so insensitive or stupid and feeling grateful that my son did not hear them.
Next the nurse who was just engaged in mockery of my son's condition comes in and without looking at my son or myself grabs his arms and starts cleaning his fresh cuts. He's rolling his eyes and says, "you know these aren't that deep, they don't need to be stitched up." I answered, "We aren't here for the cuts on his arm, we are here because he doesn't want to live anymore." He sort of froze and finally looked at me and said, "Oh, really?" He looked at my son and said, "Is that true?" to which my son answered int he affirmative. Then comes another brilliant patronizing statement delivered almost with a sense of laughter to it, "You are a good looking guy with your whole life ahead of you, why would you not want to live anymore?" I wanted to kick him in the head but still haven't gotten around to taking those kick boxing classes that would have been so helpful at this moment.
He drew the blood and took a urine sample and then we wait for an hour for the results to come back. Once the results come back then the mental health worker can be called. Until then, I sit in an awful hard plastic chair and my son sits on a gurney and we wait. Finally, the doctor who still insists on speaking to my son like he is a lost dog comes in to tell us that all the tests were clean so now we will call the mental health worker to come assess him. I muster up a smile of gratitude for the forward mtion of the process and he leaves.
We have always had women mental health workers, even had one lady twice, she was nice, I liked her. Tonight we got our first guy. He looked like he was 19 but professed later to have a 20 year old kid so I'm not sure what he's doing to stay so young looking but he seriously looked like he walked otu of an abercrombe andFitch ad with his clothes and cologne. I pulled him aside when he arrive after waiting for him for an hour and told him what my psych doc told me to tell him. He said, "Oh, wow...okay, I understand." We walked back into the room with my son and he pulled out his paperwork and said, "So, what is better or worse then when you were here last time" I was a bit stunned, I had just explained the progression of my son's mental illness and the serious intensity of his suicidal actions and the concerns of his psychiatric doctor and he was comparing today to last time.
He asked all the questions on his form and then showed us his score sheet. No, seriously, there is a score sheet. It is apparently like a quiz in a magazine. You know those quizzes, the ones that tell you if you are compatible to an executive or a hippy or if you are supposed to vacation in a motor home or on a tropical island. He tells us that my son lost points on the suicide scale because he is not a 45 year old white male and the fact that he has such a great Mom. He showed us his arithmetic and declares that my son is borderline suicidal. I was speechless. Borderline suicidal. His chart said so. We only added up to borderline. Nothing I said to him mattered, only his happy arithmetic.
He then turned to me and said, "Do you think you could take him home and keep him safe tonight?" I was stunned at the question because it seemed so stupid. I gathered myself after a few seconds and said, "Do you think I would come to the ER in the middle of the night asking for help if I thought that I could do this at home? My son told me that he could not guarantee that he would stay safe if I fell asleep, does this not warrant help beyond myself?" He stuttered for a moment and said, "but you guys have made it through before, he seem quite calm and compliant, I'm not sure he would really benefit from a psych hold." Then he said the words that were most dangerous for him, "unless you are just too tired." WHAT?!?!?!
I stopped breathing for a minute and my eyes went blurry. He offered to fax the forms to the psych hospitals around and see if anyone would take him. He said he'd get back to us in a bit. He got up and walked away. My son laid back in his gurney and closed his eyes and I started plotting ways that I could learn kick boxing in five minutes or less. My adrenaline started to race and I was working up the strength to tell this idiot that I was not leaving the ER with my son that night when he announced that the psych hospital will take him. They were saving him a bed and they would process his paperwork. I remember hearing a long exhale leave my body.
Now, we have done this several times already and the 3am shift almost never processes the incoming paperwork, they wait for the 7am shift to come and in a dump it all on them. I told the mental health worker that I had a daughter asleep at home that I wanted to go check on and since i figured it would be several hours I would go home and come back. He warned me not to leave because it could be processed very quick. I went back to the room and waited for 45 minutes for him to come in and tell me that they will not be processing his paperwork until the next shift and it could be several hours. Um...yah.
My son was sound asleep. I asked if I could write out his medications so that they could make sure he would not miss any medicines-missing meds is very very bad these days. The doctor did a "tshtpft" sort of sound and gave me a paper and a pen and stormed off-to no other patients in the whole damned ER. I left dizzy and exhausted and drove home where I finally fell asleep around 5am only to be awoken at 7am to a nurse calling to find out what medications my son needed in the morning. We finally came to the conclusion that they did not have one of the medications so I needed to bring it. I went back to the ER with my son's meds to find a fantastic nurse on the morning shift. She was friendly, compassionate and sharp as a tack. We finally got everything together and my son's transport came for him only 11. 5 hours after entering the ER...our fastest process yet. We've been there up to 26 hours before.
The likelihood that they will keep him for the full 72 hour hold is minimal. He hates it there and knows what to say to the doctors and nurses to convince them that he is no longer suicidal. Because he went in on a Sunday morning and the staff on the weekend doesn't really make those decisions, I am pretty much guaranteed one day of peace but there is no telling what will happen on Monday. My hope is to have him stay in there for at least two days to give the new medicine more time to help him stabilize without me being on hyper vigilant 24/7 watch in order for my daughter and I to breathe out for a few minutes, my adrenal glands to come back from their afterlife for maybe a day and know that he will be relatively safe.
The psych hospital is not exactly the greatest place but it is the best we have. He has been uncomfortably harassed in violent and sexual ways by some of the other kids, Being on suicide watch means he has to sit in the lobby all day long except for when he goes to group therapy which is four times a day. All the kids in there remind me of characters from "Girl Interrupted" and I think they can teach him more harm then good sometimes. When he gets home, he will need to decompress a bit and eventually he will ask me all of his questions trying to make sense of what he saw and what he heard. I just pray that I will be able to put those pieces back together enough to help him get on to a safe and healthier track. No guarantees, ever.
Saturday, November 9, 2013
...and then there is "the sib"
There is a lot of focus on one of my children but part of our family dynamic must be turned to his sister. She is the "sib" to autism and now the "sib" to bipolar. She has many typical traits of a sibling to a person who struggles with autism. She feels left out, pushed aside and resentful of all the attention her brother gets. She feels her brother gets away with EVERYTHING and that everything in her world is unfair.
In her defense, my daughter has literally been pushed aside and out of harms way. My big eyed tiny toddler of a daughter would try to get close to me for comfort when her brother used to rage and act scary and in order to keep her safe, I had to push her back and out of the way of flailing body parts as I restrained her brother. We have moved several times to accommodate her brother's educational needs which has led to her switching schools, leaving friends, packing up and changing her home several times. She has had her toys and treasured belongings destroyed by her brothers outbursts. There have been many occasions where we have not attended special fun events or we have had to leave in haste as her brother exploded and embarrassed her as folks would watch us exit with a screaming freaked out child who looked like had been possessed by satan.
Even worse then some of these regular events in our lives is the fact that my daughter loves her brother dearly. They have been best friends. She taught him to play. He would line his cars up in crop circle like patterns for hours and before she could speak, she would toddle over and grab him and he complied lovingly and innocently to her physical demands. She put a tea cup in his hand and a stuffed animal and physically forced him to pretend to drink out of it. They sat and gighled together, he because he thought it was so silly and she because her happiness to have him at her tea party. They have walked hand in hand together through thick and thin. Yet, her brother can turn on her for no reason whatsoever. She touched him wrong, he became overwhelmed, he gets anxious and can not articulate it without violent explosive behavior.
This was the world of being sib to autism and now she is learning to walk the world of being sib to bipolar. Every time she comes home she is not sure what she will walk in to, a manic brother, a suicidal brother, a belligerent brother or even the fear of walking in to a dead brother. His dark moods make it nearly impossible to converse with him. She wants to discuss her friends, school and the silly jokes they tell and he wants to discuss why humanity is stupid if he wants to converse at all. She has said several times over the last year and a half, "I just want my brother back!" She is afraid of him and for him. Anything she says to him can be twisted by his brain and used against him or her. The world is a crazy, chaotic and fragile place.
I am her one source of stability and she is seeing me stretched to my limits, exhausted, frazzled, praying, crying and trying to deal with my own fear and pain. She does not understand why I need to parent him different, why I can't fix him, how did it all turn so bad so fast and why can't we stop it from getting worse. She hates all of it and loves him and loves me. She wishes she did not love him any more because it is just too scary and hard. She tries to hate him. Sometimes she tries to hate me.
She has her own challenges with ADD and pediatric fibromyalgia and anxiety disorder. She is 13 and moody and hormonal and struggling with the typical 13 year old crazies. It is hard to focus when the world around you is swirling in chaos. Through all of this, she is one of the most beautiful girls I have ever seen. She is loving and generous and will defend anyone with a "difference" and has been known to get up into a bullies face to defend other kids and leap to the aid of a special needs kid at every school she has attended. She has a magical way with animals and children. She is healing to others. Some of these traits are gifts from her challenging family, some are just gifts from God to her. I can not protect her from her brother or our chaotic life any more then I am already doing. I try to show her love and support her positive activities to put action behind my pride and adoration of her. It is never enough and I know that. Since my babies came along, I have said that my son is the love of my life and my daughter is the light of my life and together they are the beats of my heart.
She will always be the sib to all the challenges her brother has and it is a heavy burden to bear. Because she loves him, she will rise to the challenge and because I love her I will beam with pride for the light she shines on the world. I know that the Higher Power put us together as a family for a reason, some believe we chose each other in heaven before we came, whatever it is, we were meant to be together through the pain, the love, the fear, the darkness and the light. She is more beautiful because of my son. his darkness makes her light shine so bright.
In her defense, my daughter has literally been pushed aside and out of harms way. My big eyed tiny toddler of a daughter would try to get close to me for comfort when her brother used to rage and act scary and in order to keep her safe, I had to push her back and out of the way of flailing body parts as I restrained her brother. We have moved several times to accommodate her brother's educational needs which has led to her switching schools, leaving friends, packing up and changing her home several times. She has had her toys and treasured belongings destroyed by her brothers outbursts. There have been many occasions where we have not attended special fun events or we have had to leave in haste as her brother exploded and embarrassed her as folks would watch us exit with a screaming freaked out child who looked like had been possessed by satan.
Even worse then some of these regular events in our lives is the fact that my daughter loves her brother dearly. They have been best friends. She taught him to play. He would line his cars up in crop circle like patterns for hours and before she could speak, she would toddle over and grab him and he complied lovingly and innocently to her physical demands. She put a tea cup in his hand and a stuffed animal and physically forced him to pretend to drink out of it. They sat and gighled together, he because he thought it was so silly and she because her happiness to have him at her tea party. They have walked hand in hand together through thick and thin. Yet, her brother can turn on her for no reason whatsoever. She touched him wrong, he became overwhelmed, he gets anxious and can not articulate it without violent explosive behavior.
This was the world of being sib to autism and now she is learning to walk the world of being sib to bipolar. Every time she comes home she is not sure what she will walk in to, a manic brother, a suicidal brother, a belligerent brother or even the fear of walking in to a dead brother. His dark moods make it nearly impossible to converse with him. She wants to discuss her friends, school and the silly jokes they tell and he wants to discuss why humanity is stupid if he wants to converse at all. She has said several times over the last year and a half, "I just want my brother back!" She is afraid of him and for him. Anything she says to him can be twisted by his brain and used against him or her. The world is a crazy, chaotic and fragile place.
I am her one source of stability and she is seeing me stretched to my limits, exhausted, frazzled, praying, crying and trying to deal with my own fear and pain. She does not understand why I need to parent him different, why I can't fix him, how did it all turn so bad so fast and why can't we stop it from getting worse. She hates all of it and loves him and loves me. She wishes she did not love him any more because it is just too scary and hard. She tries to hate him. Sometimes she tries to hate me.
She has her own challenges with ADD and pediatric fibromyalgia and anxiety disorder. She is 13 and moody and hormonal and struggling with the typical 13 year old crazies. It is hard to focus when the world around you is swirling in chaos. Through all of this, she is one of the most beautiful girls I have ever seen. She is loving and generous and will defend anyone with a "difference" and has been known to get up into a bullies face to defend other kids and leap to the aid of a special needs kid at every school she has attended. She has a magical way with animals and children. She is healing to others. Some of these traits are gifts from her challenging family, some are just gifts from God to her. I can not protect her from her brother or our chaotic life any more then I am already doing. I try to show her love and support her positive activities to put action behind my pride and adoration of her. It is never enough and I know that. Since my babies came along, I have said that my son is the love of my life and my daughter is the light of my life and together they are the beats of my heart.
She will always be the sib to all the challenges her brother has and it is a heavy burden to bear. Because she loves him, she will rise to the challenge and because I love her I will beam with pride for the light she shines on the world. I know that the Higher Power put us together as a family for a reason, some believe we chose each other in heaven before we came, whatever it is, we were meant to be together through the pain, the love, the fear, the darkness and the light. She is more beautiful because of my son. his darkness makes her light shine so bright.
Tuesday, November 5, 2013
raw honest ugly truth of why autism and bipolar are a suck mix.
I have been debating whether or not to post about this and probably one should always er on the side of less ism ore but I tend to be the kind of person who wears my heart on my sleeve and I believe that honesty and raw truth can maybe offer others strength. So here is a real, raw post.
This is where autism mixed with bipolar has become a deadly mix for my son. As some may know, my son has been diagnosed many years ago on the autistic spectrum and recently has had bipolar I added to his tossed salad of brain disorders. His social awkwardness in adolescence mixed with the sudden mood changes, the inability for his brain to process the happy chemicals and then produce WAY too much at any given moment has put him in the psych hospital 4x's in the last six months. Sometimes he feels it just all is too hard for him to handle and he gets exhausted and confused and doesn't want to go on trying. Sometimes he feels like he is just too much of a burden. His reasons vary and his black and white thinking is intelligent and analytical but potentially fatal.
This weekend it happened again. For whatever reason his mood went somewhat dark. On a butt load of medication to control all of this, we have been able to bring our knives out of hiding based upon his promise to not try to kill himself or cut himself anymore. Friday night, he kept his promise and in them middle of the night when the anxiety and depression was beginning to swallow him he came and got me and I was able to distract him and get his mind on other things. Saturday night he did not keep his promise.
I was up in my bed, unable to sleep in the wee hours of the morning and I heard him get up. I stayed quiet, waiting to see if he was just getting water or if he was going to need me. I heard him go to the kitchen but did not hear water running, the refrigerator open nor did he come to get me. I got suspicious that he was either sleep walking, sneaking food or something innocent and easy to deal with. I quietly walked in to the kitchen to find him cutting his arms. In order to not shock him I quietly whispered requesting him to stop. He was so surprised I was up. I looked at his bleeding arms, he was cutting over his multiple scars and several knives were laying on the counter. I have learned to NOT get upset and to stay calm and steady. He was in so much darkness that this was his alternative. I asked him why he was doing this. He tried to evade my question, apologize, etc. His biggest fear is being taken back to the psych hospital so he was trying to tell me whatever I wanted to hear to avoid the ER.
Finally my son stopped lying and evading and told me that he was trying to find a knife sharp enough to go back to his room lay down in his bed and slit his throat. It was hard to breathe and I had to stay steady and non reactive. I cleaned his arms gently and told him that this was a violation of our promise. He could not remember making that promise. I asked him how he thought I would feel if I found my dead son in his bed. He said he had not thought of that. I asked him how I would be able to go on living if he had done this to himself. He said he had not thought of that. I asked him why he thought this was a choice he wanted to make and he said, "because I can't be good at anything like other people." My son thought that he had to make a choice now, in adolescence what he was going to be successful at, like other kids do and that everybody selected their careers right now and what he would be good at. He gave up on college because the medication is causing memory problems and he feels stupid now. He wanted to be a film director but he is not sure he can be good enough at that so then he felt worthless.
I told him that he did not need to decide what he was going to do for a career right now. He only needed to live to make many choices and try many careers. He looked at me like I had three heads. I asked if he knew that, that he did not need to decide right now and that he could change his mine several times in his life. He looked so innocently stunned and amazed and answered, "no, I did not know that." He sighed with relief. He sort of chuckled and said, "Oh my God, Mom. Thank yo. I did not know that. I feel so relieved."
My son could have died over a simple misunderstanding of life direction and autistic thinking mixed with screwed up brain chemistry. He began to sob for awhile. I couldn't tell if it was grief or relief but I didn't care. He renewed his promise to me to not allow the darkness to kill him. If he feels the darkness swallowing him he MUST come get me. The problem is that I know that he can only keep that promise when he is in his right mind. My son would NEVER hurt anyone else or anything else but when he gets out of his mind he hurts himself. He turns his fears, confusion and anger on himself. His brain can switch on him in an instant right now. His medication is not holding him and he feels constantly betrayed by his brain and thoughts. He's not sure what's real or what is a trick of the mind or a side effect of the medication. He struggles so much to make it through every day. I struggle with the fact that I can not watch him 24/7 and I never know when he is twisting things in his head. I can not protect him from his own brain. I know he is so scared and confused and all I can do is hide the knives, sleep lightly or not at all and pray that I will keep catching him in his darkness, that he will let me in just enough to keep him going and that somehow he will stabilize and we can get a manageable level on his biochemistry.
I know there are folks who struggle with autistic spectrum disorders, bipolar, mental illness, depression and more. I am so proud of my son for letting me stop him, for making it through another day. I pray that we can make it through today...with every breath. This is my raw example of how bipolar and autism are a suck mix and why I don't sleep much and twitch a bit with distraction right now. I hope it wasn't too hard to read if you made it through.
This is where autism mixed with bipolar has become a deadly mix for my son. As some may know, my son has been diagnosed many years ago on the autistic spectrum and recently has had bipolar I added to his tossed salad of brain disorders. His social awkwardness in adolescence mixed with the sudden mood changes, the inability for his brain to process the happy chemicals and then produce WAY too much at any given moment has put him in the psych hospital 4x's in the last six months. Sometimes he feels it just all is too hard for him to handle and he gets exhausted and confused and doesn't want to go on trying. Sometimes he feels like he is just too much of a burden. His reasons vary and his black and white thinking is intelligent and analytical but potentially fatal.
This weekend it happened again. For whatever reason his mood went somewhat dark. On a butt load of medication to control all of this, we have been able to bring our knives out of hiding based upon his promise to not try to kill himself or cut himself anymore. Friday night, he kept his promise and in them middle of the night when the anxiety and depression was beginning to swallow him he came and got me and I was able to distract him and get his mind on other things. Saturday night he did not keep his promise.
I was up in my bed, unable to sleep in the wee hours of the morning and I heard him get up. I stayed quiet, waiting to see if he was just getting water or if he was going to need me. I heard him go to the kitchen but did not hear water running, the refrigerator open nor did he come to get me. I got suspicious that he was either sleep walking, sneaking food or something innocent and easy to deal with. I quietly walked in to the kitchen to find him cutting his arms. In order to not shock him I quietly whispered requesting him to stop. He was so surprised I was up. I looked at his bleeding arms, he was cutting over his multiple scars and several knives were laying on the counter. I have learned to NOT get upset and to stay calm and steady. He was in so much darkness that this was his alternative. I asked him why he was doing this. He tried to evade my question, apologize, etc. His biggest fear is being taken back to the psych hospital so he was trying to tell me whatever I wanted to hear to avoid the ER.
Finally my son stopped lying and evading and told me that he was trying to find a knife sharp enough to go back to his room lay down in his bed and slit his throat. It was hard to breathe and I had to stay steady and non reactive. I cleaned his arms gently and told him that this was a violation of our promise. He could not remember making that promise. I asked him how he thought I would feel if I found my dead son in his bed. He said he had not thought of that. I asked him how I would be able to go on living if he had done this to himself. He said he had not thought of that. I asked him why he thought this was a choice he wanted to make and he said, "because I can't be good at anything like other people." My son thought that he had to make a choice now, in adolescence what he was going to be successful at, like other kids do and that everybody selected their careers right now and what he would be good at. He gave up on college because the medication is causing memory problems and he feels stupid now. He wanted to be a film director but he is not sure he can be good enough at that so then he felt worthless.
I told him that he did not need to decide what he was going to do for a career right now. He only needed to live to make many choices and try many careers. He looked at me like I had three heads. I asked if he knew that, that he did not need to decide right now and that he could change his mine several times in his life. He looked so innocently stunned and amazed and answered, "no, I did not know that." He sighed with relief. He sort of chuckled and said, "Oh my God, Mom. Thank yo. I did not know that. I feel so relieved."
My son could have died over a simple misunderstanding of life direction and autistic thinking mixed with screwed up brain chemistry. He began to sob for awhile. I couldn't tell if it was grief or relief but I didn't care. He renewed his promise to me to not allow the darkness to kill him. If he feels the darkness swallowing him he MUST come get me. The problem is that I know that he can only keep that promise when he is in his right mind. My son would NEVER hurt anyone else or anything else but when he gets out of his mind he hurts himself. He turns his fears, confusion and anger on himself. His brain can switch on him in an instant right now. His medication is not holding him and he feels constantly betrayed by his brain and thoughts. He's not sure what's real or what is a trick of the mind or a side effect of the medication. He struggles so much to make it through every day. I struggle with the fact that I can not watch him 24/7 and I never know when he is twisting things in his head. I can not protect him from his own brain. I know he is so scared and confused and all I can do is hide the knives, sleep lightly or not at all and pray that I will keep catching him in his darkness, that he will let me in just enough to keep him going and that somehow he will stabilize and we can get a manageable level on his biochemistry.
I know there are folks who struggle with autistic spectrum disorders, bipolar, mental illness, depression and more. I am so proud of my son for letting me stop him, for making it through another day. I pray that we can make it through today...with every breath. This is my raw example of how bipolar and autism are a suck mix and why I don't sleep much and twitch a bit with distraction right now. I hope it wasn't too hard to read if you made it through.
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