Raising B - The Journey Thus Far
Today was draining.
I'm a 33 year old mother of three children. My oldest is 15 and has been through hell and back with his mental illness. I have struggled to raise this child to the best of my ability. I have fought the school board with delays and excuses, I have fought doctors and agencies and psychiatrists to see what I see and hear me. It took years of fighting to finally get my son, B, a diagnosis of Autism Spectrum Disorder a couple months before he turned 11. This came after years of B having auditory hallucinations, aggressive behaviour including assaulting many children at school, having the schools (more than one) put on lockdown, leaving the school/classroom, etc. This journey has been exhausting, yet rewarding.
You may think this is a blog about ASD. It's not. It's so much more than that.
When B was 8, I brought him to the ER at the advice of his school at the time after episodes of violence and auditory hallucinations. They even wrote letters of support to help. I needed to figure out what was going on with my son. I found childhood schizophrenia symptoms to align with what was happening to my son. I was told not to diagnose my child, that he was just an angry child, it was impossible for him to have schizophrenia at 8 years old and there was nothing wrong with him. Angry due to grief and trauma due to death and an absent father. It sat well with me that they did not see the symptoms and that maybe another diagnosis could explain it. Two years later, he was diagnosed with ASD.
ASD seemed to explain enough to make sense. Ok, so we had an explanation and can use that information to help him succeed. Right? Wrong. He was in Kinark Day Treatment class for a year and a half, and diagnosed ASD nearing the end of his placement. The school board decided, despite every professional's advice against it, to throw him back into mainstream school unsupported. This was Grade 7. During Grade 7, B spiraled out of control. He believed children were bullying him when they were not (sometimes they were), he premeditated attacks on these children, held grudges forever and started threatening suicide.
We, to date, have attended the ER at three different hospitals eight times total, each time to no avail. Just to throw this in there. Called crisis lines multiple times, each time to no avail. Our mental health care for children is an absolute joke. However, I digress.
B was placed (after grade 7 and needing to homeschool him for the last while, as he was too unsafe to be at school) in the Multiple Exceptionalities room for Grade 8-current (Grade 10).
I spoke to my family physician about B several times, who agreed wholeheartedly that there is no way that B's condition could be explained only with ASD. Could we get any other doctor or professional to see it? So far, no.
As he aged out of Kinark, he moved on to Frontenac Youth Services. He was given an Intensive Child Youth Counselor who would pick him up once a week and go out for an hour at a time for Individual Counseling in the community. We also did Family Counseling for a while, who noticed that B's way of thinking and his paranoia was not normal. She assessed with a couple questionnaires and referred him to their consulting psychiatrist, who took almost a year to get in to see.
B thrived in the ME room. His grades finally improved and he actually graduated grade 8 with two awards! However, after his father (whom he only sees supervised on rare occasions) did not show up for Christmas, causing anguish and distress. Jan 3rd was his first appointment with the psychiatrist. She put him on the radar for prodomal schizophrenia and diagnosed him with Intermittent Explosive Episodes. Ok, so someone is finally maybe seeing it a little bit. Progress.
After this time, B's entire demeanor took a massive decline. He stopped washing properly (not that he ever washed properly, but it got worse), his sleep was impacted, and he was mean to his peers and teachers. He didn't really have friends, but he did have one boy in class he was speaking to and a friend from his old school that he had on and off, depending on B's attitude and desire to do something (anything!) other than play Minecraft. B has been obsessed with Minecraft for years.
Shortly thereafter, B admitted that he heard voices calling his name and also command hallucinations telling him to attack and harm others (and sometimes his own self). This insight allowed for progress to actually start happening. He also reported massive headaches.
May 24th, 2017, B was at a school event and in a crowd. Crowds, as we know now, are triggers. At this point, the voices were incessant and he found his arm moving toward a police officer's gun, as if disconnected from his mind. He sat on his hands to control them. He was very distressed. We went to the hospital. Nothing.
After this point, the psychiatrist made a referral for the Ontario Shores Center for Mental Health Sciences Adolescent Inpatient program with the diagnosis of Psychosis (R/O Schizophreniform Disorder). Before he was admitted, he was assessed by the Kid's Clinic by a pediatrician and was found to have severe high functioning autism and two learning disabilities.
June 28th, he was admitted to OS for six weeks. He also saw a neurologist and was diagnosed with migraines. He also had an MRI, which was clear.
During this time, my current relationship with my other two daughter's father took a significant decline. Although B seemed to be doing much better, I was not. I found it hard to control the emotions and reactions to my spouse's behaviour and the stress was debilitating. I was diagnosed with Generalized Anxiety Disorder since puberty, and found myself asking my doctor to be put back on medication and sough an abuse counselor, due to the issues with my (now former) spouse.
B was discharged early August. He was a brand new kid! The program was AMAZING. He was formally diagnosed with Schizophreniform disorder.
Schizophreniform disorder is a mental disorder diagnosed when symptoms of schizophrenia are present for a significant portion of the time within a one-month period, but signs of disruption are not present for the full six months required for the diagnosis of schizophrenia.
B started his grade 10 year back in the ME room. His teachers noticed massive improvements, except he was always very tired and his memory was severely impacted. He still had some symptoms of paranoia. One of his EA's told me that, while she was working on reading with him in Grade 9, that he perceived the good guys in books as the bad guys. This was disturbing.
Each week at school was progressively worse, but not horrible. He was still hearing his name being called and had auditory hallucinations that were happy and nice (never had this before that I know of). Then, last week, he had a command hallucination to attack a child in his class. He controlled it, but we were advised strongly by his counselor and psychiatrist to head to the ER, who, in turn, referred us back to the psychiatrist. Remember they are useless? Yeah. Still are.
The next day (Friday), I was informed that he was to be re admitted to Ontario Shores inpatient on Monday, as a bed had opened up and he was pushed to the top of the priority list. I was then stuck with the difficult task of telling him. We went out to lunch. He is so sick of hospitals.
I also kicked my spouse out last week. He doesn't want to be with me or do any work to fix our family, so he needed to leave. Even though he is still a father to these kids (step to B), I am dealing with this alone. I have spent every night alone with the kids thus far. My other two have special needs as well, my youngest being diagnosed with ASD at the age of 4.
Today, I went through the admission process with B and Ontario Shores. He lives there now, for probably a month. On the way to OS, he informed me that he also had had two visual hallucinations involving shadow like figures quickly running off. This is the first I have ever heard of visual. Hard to tell how many or what is happening with his impaired memory.
We have plane tickets for Oct 20th, that we may need to cancel. We cancelled a trip to Nova Scotia in July due to his hospitalization, and now we risk having to cancel our trip to Alberta to attend my cousin's wedding. We are in Ontario.
I am filled with so many emotions. I used to think that an Autism diagnosis was the scariest mental health diagnosis a parent could hear (in my case twice). I was wrong. Schizophreniform is a max of 6 months. This has been going on since he was 8 and he is now 15. We have to go through the motions with the psychiatrist to see it herself longer than 6 months. This is the 6th month since she saw the psychosis. I am preparing myself for the diagnosis of Schizophrenia to happen. Any time now. It won't be schizoaffective, as they do not see a mood disorder, but it will be Schizophrenia. Just like I told the doctor in the ER 7 years ago. I am happy he is getting the best care possible and can reconnect with the nurses, doctors and at least three patients from the last time he was admitted. They are amazing. I couldn't be more appreciative for everything they have done for my son. As for me? I'm falling apart and trying not to let my kids know in any way. My spouse is gone. My support system is gone. I spend every night alone. I have no one to hug me and tell me it's going to be okay or let me let my guard down so I can fall apart and grieve the life I wanted for myself and my child.
Mental illness is real. It destroys families, it isn't taken seriously in hospitals, it is horrendous to try to get any assistance for it especially for children and it wears on a caregiver like someone who is not in the same position could never understand. I don't wish it on my worst enemy. Today, I grieve. My son's room is barren and will be for at least a month (aside from his weekend visits home that he will thankfully receive). My daughters don't really understand what is going on with him. Hell, I don't think anyone who doesn't have schizophrenia could truly understand what it feels like. We can only imagine.
Raising B has been a rewarding, exhausting, and eye opening experience and there are still many years to come.
I'm a 33 year old mother of three children. My oldest is 15 and has been through hell and back with his mental illness. I have struggled to raise this child to the best of my ability. I have fought the school board with delays and excuses, I have fought doctors and agencies and psychiatrists to see what I see and hear me. It took years of fighting to finally get my son, B, a diagnosis of Autism Spectrum Disorder a couple months before he turned 11. This came after years of B having auditory hallucinations, aggressive behaviour including assaulting many children at school, having the schools (more than one) put on lockdown, leaving the school/classroom, etc. This journey has been exhausting, yet rewarding.
You may think this is a blog about ASD. It's not. It's so much more than that.
When B was 8, I brought him to the ER at the advice of his school at the time after episodes of violence and auditory hallucinations. They even wrote letters of support to help. I needed to figure out what was going on with my son. I found childhood schizophrenia symptoms to align with what was happening to my son. I was told not to diagnose my child, that he was just an angry child, it was impossible for him to have schizophrenia at 8 years old and there was nothing wrong with him. Angry due to grief and trauma due to death and an absent father. It sat well with me that they did not see the symptoms and that maybe another diagnosis could explain it. Two years later, he was diagnosed with ASD.
ASD seemed to explain enough to make sense. Ok, so we had an explanation and can use that information to help him succeed. Right? Wrong. He was in Kinark Day Treatment class for a year and a half, and diagnosed ASD nearing the end of his placement. The school board decided, despite every professional's advice against it, to throw him back into mainstream school unsupported. This was Grade 7. During Grade 7, B spiraled out of control. He believed children were bullying him when they were not (sometimes they were), he premeditated attacks on these children, held grudges forever and started threatening suicide.
We, to date, have attended the ER at three different hospitals eight times total, each time to no avail. Just to throw this in there. Called crisis lines multiple times, each time to no avail. Our mental health care for children is an absolute joke. However, I digress.
B was placed (after grade 7 and needing to homeschool him for the last while, as he was too unsafe to be at school) in the Multiple Exceptionalities room for Grade 8-current (Grade 10).
I spoke to my family physician about B several times, who agreed wholeheartedly that there is no way that B's condition could be explained only with ASD. Could we get any other doctor or professional to see it? So far, no.
As he aged out of Kinark, he moved on to Frontenac Youth Services. He was given an Intensive Child Youth Counselor who would pick him up once a week and go out for an hour at a time for Individual Counseling in the community. We also did Family Counseling for a while, who noticed that B's way of thinking and his paranoia was not normal. She assessed with a couple questionnaires and referred him to their consulting psychiatrist, who took almost a year to get in to see.
B thrived in the ME room. His grades finally improved and he actually graduated grade 8 with two awards! However, after his father (whom he only sees supervised on rare occasions) did not show up for Christmas, causing anguish and distress. Jan 3rd was his first appointment with the psychiatrist. She put him on the radar for prodomal schizophrenia and diagnosed him with Intermittent Explosive Episodes. Ok, so someone is finally maybe seeing it a little bit. Progress.
After this time, B's entire demeanor took a massive decline. He stopped washing properly (not that he ever washed properly, but it got worse), his sleep was impacted, and he was mean to his peers and teachers. He didn't really have friends, but he did have one boy in class he was speaking to and a friend from his old school that he had on and off, depending on B's attitude and desire to do something (anything!) other than play Minecraft. B has been obsessed with Minecraft for years.
Shortly thereafter, B admitted that he heard voices calling his name and also command hallucinations telling him to attack and harm others (and sometimes his own self). This insight allowed for progress to actually start happening. He also reported massive headaches.
May 24th, 2017, B was at a school event and in a crowd. Crowds, as we know now, are triggers. At this point, the voices were incessant and he found his arm moving toward a police officer's gun, as if disconnected from his mind. He sat on his hands to control them. He was very distressed. We went to the hospital. Nothing.
After this point, the psychiatrist made a referral for the Ontario Shores Center for Mental Health Sciences Adolescent Inpatient program with the diagnosis of Psychosis (R/O Schizophreniform Disorder). Before he was admitted, he was assessed by the Kid's Clinic by a pediatrician and was found to have severe high functioning autism and two learning disabilities.
June 28th, he was admitted to OS for six weeks. He also saw a neurologist and was diagnosed with migraines. He also had an MRI, which was clear.
During this time, my current relationship with my other two daughter's father took a significant decline. Although B seemed to be doing much better, I was not. I found it hard to control the emotions and reactions to my spouse's behaviour and the stress was debilitating. I was diagnosed with Generalized Anxiety Disorder since puberty, and found myself asking my doctor to be put back on medication and sough an abuse counselor, due to the issues with my (now former) spouse.
B was discharged early August. He was a brand new kid! The program was AMAZING. He was formally diagnosed with Schizophreniform disorder.
Schizophreniform disorder is a mental disorder diagnosed when symptoms of schizophrenia are present for a significant portion of the time within a one-month period, but signs of disruption are not present for the full six months required for the diagnosis of schizophrenia.
B started his grade 10 year back in the ME room. His teachers noticed massive improvements, except he was always very tired and his memory was severely impacted. He still had some symptoms of paranoia. One of his EA's told me that, while she was working on reading with him in Grade 9, that he perceived the good guys in books as the bad guys. This was disturbing.
Each week at school was progressively worse, but not horrible. He was still hearing his name being called and had auditory hallucinations that were happy and nice (never had this before that I know of). Then, last week, he had a command hallucination to attack a child in his class. He controlled it, but we were advised strongly by his counselor and psychiatrist to head to the ER, who, in turn, referred us back to the psychiatrist. Remember they are useless? Yeah. Still are.
The next day (Friday), I was informed that he was to be re admitted to Ontario Shores inpatient on Monday, as a bed had opened up and he was pushed to the top of the priority list. I was then stuck with the difficult task of telling him. We went out to lunch. He is so sick of hospitals.
I also kicked my spouse out last week. He doesn't want to be with me or do any work to fix our family, so he needed to leave. Even though he is still a father to these kids (step to B), I am dealing with this alone. I have spent every night alone with the kids thus far. My other two have special needs as well, my youngest being diagnosed with ASD at the age of 4.
Today, I went through the admission process with B and Ontario Shores. He lives there now, for probably a month. On the way to OS, he informed me that he also had had two visual hallucinations involving shadow like figures quickly running off. This is the first I have ever heard of visual. Hard to tell how many or what is happening with his impaired memory.
We have plane tickets for Oct 20th, that we may need to cancel. We cancelled a trip to Nova Scotia in July due to his hospitalization, and now we risk having to cancel our trip to Alberta to attend my cousin's wedding. We are in Ontario.
I am filled with so many emotions. I used to think that an Autism diagnosis was the scariest mental health diagnosis a parent could hear (in my case twice). I was wrong. Schizophreniform is a max of 6 months. This has been going on since he was 8 and he is now 15. We have to go through the motions with the psychiatrist to see it herself longer than 6 months. This is the 6th month since she saw the psychosis. I am preparing myself for the diagnosis of Schizophrenia to happen. Any time now. It won't be schizoaffective, as they do not see a mood disorder, but it will be Schizophrenia. Just like I told the doctor in the ER 7 years ago. I am happy he is getting the best care possible and can reconnect with the nurses, doctors and at least three patients from the last time he was admitted. They are amazing. I couldn't be more appreciative for everything they have done for my son. As for me? I'm falling apart and trying not to let my kids know in any way. My spouse is gone. My support system is gone. I spend every night alone. I have no one to hug me and tell me it's going to be okay or let me let my guard down so I can fall apart and grieve the life I wanted for myself and my child.
Mental illness is real. It destroys families, it isn't taken seriously in hospitals, it is horrendous to try to get any assistance for it especially for children and it wears on a caregiver like someone who is not in the same position could never understand. I don't wish it on my worst enemy. Today, I grieve. My son's room is barren and will be for at least a month (aside from his weekend visits home that he will thankfully receive). My daughters don't really understand what is going on with him. Hell, I don't think anyone who doesn't have schizophrenia could truly understand what it feels like. We can only imagine.
Raising B has been a rewarding, exhausting, and eye opening experience and there are still many years to come.
Love you dude. You're doing amazing even when it doesn't feel like it. If I was physically closer you know I'd be there more often 💓
ReplyDeleteThanks lady! I know you would be. Love you back!
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