Today's rollercoaster ride had the highest highs and the craziest lows that I have ever had in a 12 hour period. I spent my morning touring George Washington Academy for Matthew. The classroom he would be in would have 4 kids, 1 teacher and 3 or 4 aides. I figure that is way better than our ratios at home or anywhere else he has been! I loved the teacher, and I liked her description of the classroom. The classroom is taught at a second grade level which is appropriate for Matthew. The high of possibly being on a positive track for Matthew felt so good.
This afternoon however things took a nose dive. I had a meeting with the Psychiatrist at 4 Winds. When he arrived he sat down and asked me why we were meeting. I didnt call the meeting, I got a message that he wanted to meet, so we started off with me pretty confused. He then went on to describe Matthew's needs and disabilities to me.
"Matthew is a perfect storm. He is a child with Mental health issues, likely bipolar, significant congitive delays, and Fetal Alcohol syndrome and possible ADHD. The mental health issues cause mood instability. The cognitive delays also cause mood instability- he sees something he wants it, he has to have it. (if you have read the "I am a toddler" poem, you will understand Matthew. If it's mine, it's mine, if it's yours it's mine, if I want it it's mine). Additionally, the FAS does not allow him to process and learn as other's do. His ADHD is also there, and also keeps him from learning from his environment"
He continued to say, " Matthew is successful here because of the high level of support we have." (I was curious about the word "successful" as just yesterday he was out of control and required thorazine to calm down, but apparently my definition of success is different from theirs.)
When I asked what the continued plan was for Matthew at 4 winds, he said that he was not making any more changes to Matthew's medication. He has taken away Matthew's prozac, a medicine that was supposed to help with his anxiety and obsessions, and increased his Seraquel, which helps with his mood instability. Matthew has nothing to help with anxiety at this point and anxiety is what is often the root cause of so many of his outbursts.
He also has no medication to help with the fact that he is hyperresponsive to everything in his environment. If a clock is ticking, Matthew hears it. If the wind blows, Matthew notices it. If you walk in a room, he has to talk to you. If you breathe, he has to listen to you. Do you know how exhausting that is? Can you imagine the effort it takes to pay attention to every single solitary thing that happens around you at all times. Try it for a minute.........see how it feels. Can you imagine doing it all day?
He continued that Matthew is doing well. When I reminded him that just the day before he had needed Thorazine, he acknowledged that right now Matthew is not the most challenging patient they have and that he meant that Matthew is doing well by comparison to others. He also acknowledged that since they know Matthew well, he is easier for them to treat and work with him. I reminded him that my only focus is Matthew and that no matter how "well he is doing", I am concerned that he is not ready to come home.
Then the therapist dropped them bomb......they are sending Matthew home tomorrow.
I am not ready. I tried to explain. He has no school to go to. I dont know how long it will take to transfer him to the new program, but my hope is Tuesday.
His brothers arent ready. They are just returning to calm. It has only been a week.
I am not ready. I miss my boy, but the knots in my shoulders are finally going away. I am just starting to get life back to calm, and then I need to make some changes for when Matthew comes home and I havent had enough time to figure out what changes to make.
I asked for more time. The therapist thought that maybe because of school he could buy another few days. He asked, and the psychiatrist said no. Matthew is coming home tomorrow.
I visited with Matthew, and we had a good visit. We played UNO and I watched him watch the world around him watching everything. He made a few jokes as we played and talked about breakfast, lunch and dinner. He chatted with our friend who had come to the meeting to support me. I told him I would see him tomorrow.
I cried most of the way home. I miss him. I want him home, but I cannot stand living in and out of trauma. I had to tell the other 2 boys that Matthew was coming home. I had to prep them.
When Jacob and I got home I made dinner and told Jacob and David that Matthew was coming home tomorrow. I was calm and I told them that Matthew would be home tomorrow night. Jacob's first response was, "I'm not ready", and his second comment was "what about the orange juice? We have to finish the orange juice."
How honest and amazing that Jacob was able to tell me he was not ready. I love him to death. I love his honesty and his self assured nature. I love that he feels safe enough to tell me what he thinks.
Jacob and David have been sleeping in Matthew's bed for the last 2 nights....i know they miss him, although Jacob will tell you it is because Matthew has a cool picture in his room.
I think one of my biggest problems is that I was just beginning to come to terms with Matthew's limits. In my last post I put so many of my thoughts on paper. My real sadness thoughts,.....of all the things I was grieving. I love my oldest son. It is a fierce, fierce love.
My ability to come to terms with Matthew's struggles is a distance run, not a sprint. I just feel like I was making headway and now I have to go back into the trenches. I am not ready to talk about dinner before we eat breakfast. I am not ready to be tense again.
He will come home tomorrow.....I will go get him and we will get back into it. He and I will find our way together.
Jacob, David and I have each written the one rule we need Matthew to follow. I am hoping that this gives the boys some control, and that for Matthew he understands that everything else is a little deal, but that these 3 rules are important.
1. He cannot tease his brothers at bedtime.
2. He cannot threaten to hit or kill Jacob
3. He can't scare Jacob and David.
If I can promise them nothing else, I am hoping that I can promise Jacob and David this much. If I can work on nothing else with Matthew, I am hoping he and I can work on this.
My family will be strong again. We will be together and I will again be Matthew's strongest supporter.
There is a problem that the system discharges a child from the hospital a day after receiving thorazing due to an outburst. There is a problem when a child is not really succeeding without a high level of support and the child is sent home to a single mom with 2 other children, and no new supports are added to help the family when the child is still unstable.
There is a problem when our insurance companies are deciding when a child has to leave the hospital rather than a doctor making this decision. There is also a problem that there are so many kids waiting for beds that no sooner will Matthew be out the door than a new child will be in right behind him.
There are so many problems, and when I am not so knee deep in the middle of crisis, I will be a voice for change. Until then, please keep sharing and talking about mental health. There are children who's lives are at risk. There are children who are suffering unnecessarily and families who are being stressed more than they can bear. We need respite that works. Support programs that are adequately staffed, and mental health care that truly ensures that children are safe before being placed back into their families who are ready and waiting with open arms.
Tuesday, January 15, 2013
Sunday, January 13, 2013
The child he was supposed to be
I just read a blog about a little girl who passed away when her dresser fell on her.
I know a wonderful family who lost their amazing 9 year to cancer.
I know a family in our community who lost their daughter to cancer last February.
I know that it can be worse. I have said this before, and I will always always believe it.
Tonight however, my heart is aching. It is aching for my memories of the Matthew I knew before he hit bottom.
My Matthew is an amazing drummer......he has played since he was 3 years old and makes music amazingly! He should be in the middle school band, but he can't focus long enough. He was going to be in jazz band, actually in my dreams he was going to be the most popular drummer in his school. But you can't be the most popular drummer if you can't be in the band.
My Matthew loves people. He loves to talk to people. I thought he would be a politician. I thought he would work with people. I thought he would be on student council. But he says the same things over and over and over again. He takes every joke too far to the point of annoyance because for him if it is funny once it is still funny 100 times later. He can't be on student council, he has not one friend in this world.
My Matthew is such a cutie. He was supposed to have girls flocking all over him. He was going to be one of the "cool kids". Dancing at school dances. Laughing and dancing at all of the Bar Mitzvahs of his friends. But he won't have the girls flocking. He wont be going to school dances. Sure, he may go to some dances for children with special needs, but this isn't what was in my dreams. It is not bad or good, it is just different from my dreams.
He was going to have one hell of a Bar Mitzvah! At the age of 3, I debated taking him to Israel because he was a very spiritual child. I have looked forward to his Bar Mitzvah for so many years. It is time to face reality- he will become a Bar Mitzvah but it will be in a very limited way. You see, he loves Judaism, but his short term and long term memory are so destroyed that he can't seem to learn to read hebrew. I thought he could do it by listening to CD's but even that for his favorite songs is causing him challenges now, so I can't imagine that learning hebrew prayers will be easy.
I am dreaming about what else his Bar Mitzvah can look like...I will come up with something because it will be a day that I need to celebrate, but it won't be what I dreamed.
I feel like I am mourning my child. I feel like I have lost him. Right now he is so deeply affected by mental illness and getting more and more lost cognitively. He doesn't mean it. I know that. If he could fix it, he would.
Tonight my heart is breaking. My tears are stuck in my throat. I cried at Staples. I cried while the boys ate dinner. I miss my little boy. I miss the future he was supposed to have. I want to have this undone. I want him back.
On Tuesday I have a meeting with the Pyschiatrist at 4 Winds. I am so afraid that he is going to tell me it is time to face the reality that not much can be done. I cannot "face that reality". I cannot give up on my son. But I also can't live like we were. It is calm at our house right now. We went bowling today, not at all a calm activity, and had a wonderful time.
Everything is calmer with Matthew in the hospital, except for the fact that my heart is breaking. The little boys have time to have their voices heard. I have time to think. There is calm in our day, and right now I would trade it all in to hug my son!
I know a wonderful family who lost their amazing 9 year to cancer.
I know a family in our community who lost their daughter to cancer last February.
I know that it can be worse. I have said this before, and I will always always believe it.
Tonight however, my heart is aching. It is aching for my memories of the Matthew I knew before he hit bottom.
My Matthew is an amazing drummer......he has played since he was 3 years old and makes music amazingly! He should be in the middle school band, but he can't focus long enough. He was going to be in jazz band, actually in my dreams he was going to be the most popular drummer in his school. But you can't be the most popular drummer if you can't be in the band.
My Matthew loves people. He loves to talk to people. I thought he would be a politician. I thought he would work with people. I thought he would be on student council. But he says the same things over and over and over again. He takes every joke too far to the point of annoyance because for him if it is funny once it is still funny 100 times later. He can't be on student council, he has not one friend in this world.
My Matthew is such a cutie. He was supposed to have girls flocking all over him. He was going to be one of the "cool kids". Dancing at school dances. Laughing and dancing at all of the Bar Mitzvahs of his friends. But he won't have the girls flocking. He wont be going to school dances. Sure, he may go to some dances for children with special needs, but this isn't what was in my dreams. It is not bad or good, it is just different from my dreams.
He was going to have one hell of a Bar Mitzvah! At the age of 3, I debated taking him to Israel because he was a very spiritual child. I have looked forward to his Bar Mitzvah for so many years. It is time to face reality- he will become a Bar Mitzvah but it will be in a very limited way. You see, he loves Judaism, but his short term and long term memory are so destroyed that he can't seem to learn to read hebrew. I thought he could do it by listening to CD's but even that for his favorite songs is causing him challenges now, so I can't imagine that learning hebrew prayers will be easy.
I am dreaming about what else his Bar Mitzvah can look like...I will come up with something because it will be a day that I need to celebrate, but it won't be what I dreamed.
I feel like I am mourning my child. I feel like I have lost him. Right now he is so deeply affected by mental illness and getting more and more lost cognitively. He doesn't mean it. I know that. If he could fix it, he would.
Tonight my heart is breaking. My tears are stuck in my throat. I cried at Staples. I cried while the boys ate dinner. I miss my little boy. I miss the future he was supposed to have. I want to have this undone. I want him back.
On Tuesday I have a meeting with the Pyschiatrist at 4 Winds. I am so afraid that he is going to tell me it is time to face the reality that not much can be done. I cannot "face that reality". I cannot give up on my son. But I also can't live like we were. It is calm at our house right now. We went bowling today, not at all a calm activity, and had a wonderful time.
Everything is calmer with Matthew in the hospital, except for the fact that my heart is breaking. The little boys have time to have their voices heard. I have time to think. There is calm in our day, and right now I would trade it all in to hug my son!
Wednesday, January 9, 2013
today's update
My brain is functioning best in random thoughts, rather than organized writing.....so here goes:
1. The Nurse Practitioner at 4 winds talked to matthew's outpatient psychiatrist today. They agreed to decrease his prozac, as it might be causing him to be agitated. Curiously, when I called on New Years Eve, before things got really, really bad, and I asked this EXACT question, I was told that there was no need to change meds at that time.
Apparently it is only after your child is restrained by police and 3 adults at school that it becomes apparent that prozac may cause agitation.
2. Jacob asked if they could have dessert today because "they never get dessert". I reminded him that sometimes we get dessert, and he said that the wants the dessert that you buy and is there again the next day. If that didnt break my heart and convince me to buy the boy a carton of ice cream, nothing would!
This child is growing up with a wacky view of the world, but it is his view! I am walking a fine line between giving him the "normal" things that happen in life, (ie having ice cream in the house, having our food not locked in a lock box,) and not making life soo much fun that when Matthew comes home the adjustment is rough on Jacob.
3. To hear Jacob and David both say all morning and all evening how much fun it is when it is the 3 of us makes me so sad and so proud all at the same time. That they can both recognize their emotions and realize that they should enjoy this time makes me proud. I hope they are always comfortable telling me when they need a break from the stress of FAS. I hope that sometime soon we can have a good time together and I can point out how awesome it is to be the 4 of us all together!
4. I woke up this morning and felt at peace and relaxed. We had a slow morning around the house, and lazied around before school. Last summer the head of Matthew's summer program described Matthew as being a constant verbal attack on a person. I had forgotten how true this statement is. Even when Matthew is happy, which he is a lot, he lives life functioning at an energy level of at least 15 on a scale of 1 to 10. No one else can function like that. He spins, he talks, he jumps, he sings, he exhausts me.
it is nice to have this quiet.
I am going to use this time as the gift that it is for me and my boys. Matthew is getting a break and life for him in many ways is easier in the hospital. He thrives on having all of the new people to interact with and the schedule that is not able to be replicated outside of that setting is really good for him.
I spoke to him tonight and he is happy. He missed hebrew school which upset him, but beyond that he enjoyed his activities today. I am going to see him tomorrow and will be meeting with the social worker. I will keep hoping that new opportunities open and new meds help him to find peace.
1. The Nurse Practitioner at 4 winds talked to matthew's outpatient psychiatrist today. They agreed to decrease his prozac, as it might be causing him to be agitated. Curiously, when I called on New Years Eve, before things got really, really bad, and I asked this EXACT question, I was told that there was no need to change meds at that time.
Apparently it is only after your child is restrained by police and 3 adults at school that it becomes apparent that prozac may cause agitation.
2. Jacob asked if they could have dessert today because "they never get dessert". I reminded him that sometimes we get dessert, and he said that the wants the dessert that you buy and is there again the next day. If that didnt break my heart and convince me to buy the boy a carton of ice cream, nothing would!
This child is growing up with a wacky view of the world, but it is his view! I am walking a fine line between giving him the "normal" things that happen in life, (ie having ice cream in the house, having our food not locked in a lock box,) and not making life soo much fun that when Matthew comes home the adjustment is rough on Jacob.
3. To hear Jacob and David both say all morning and all evening how much fun it is when it is the 3 of us makes me so sad and so proud all at the same time. That they can both recognize their emotions and realize that they should enjoy this time makes me proud. I hope they are always comfortable telling me when they need a break from the stress of FAS. I hope that sometime soon we can have a good time together and I can point out how awesome it is to be the 4 of us all together!
4. I woke up this morning and felt at peace and relaxed. We had a slow morning around the house, and lazied around before school. Last summer the head of Matthew's summer program described Matthew as being a constant verbal attack on a person. I had forgotten how true this statement is. Even when Matthew is happy, which he is a lot, he lives life functioning at an energy level of at least 15 on a scale of 1 to 10. No one else can function like that. He spins, he talks, he jumps, he sings, he exhausts me.
it is nice to have this quiet.
I am going to use this time as the gift that it is for me and my boys. Matthew is getting a break and life for him in many ways is easier in the hospital. He thrives on having all of the new people to interact with and the schedule that is not able to be replicated outside of that setting is really good for him.
I spoke to him tonight and he is happy. He missed hebrew school which upset him, but beyond that he enjoyed his activities today. I am going to see him tomorrow and will be meeting with the social worker. I will keep hoping that new opportunities open and new meds help him to find peace.
Matthew is back at 4 winds
If you have been following along recently, it should come as no surprise that Matthew is back in the hospital. I am not at the point where I can write a lot, too much is in my head right now, but there are a few things I have to share.
1. I got a call saying 4 winds had a bed for him at 9 and at 11:30 I got a call saying he was struggling at school. They were "surpised to see him so upset". Are they not seeing the same child I am seeing? Are they not reading the emails I am sending....Is it too much to ask for a consistency of care between home and school.
2. Upon arriving at 4 Winds I met with a nurse practitioner to discuss medications because the psychiatrist had gone home sick. Now I am not, nor do I profess to be a psychiatrist, however, as Matthew's mom, I do believe I know him best.
His outpatient doctor increased his prozac in October because he was seeming to be very anxious and starting to show an increase in behavior. The nurse practitioner today said the dose is too high. The outpatient doctor who I spoke to over the past week had no concerns about the dose.......who is right? Who is wrong? how will we know?
The hospital last time played with a variety of doses of seraquel for Matthew settling on an extended release dose at night. He had been on a higher dose, no effect, he had been on a lower dose, no improvement. This was the target and appropriate dose less than a year ago. The outpatient doctor has not touched this dosage and sees no reason to. The nurse practitioner today wants to increase that dose. I begged her to please read through his chart.
I truly believe we can't just add meds. We can't just increase dosages. We hvae to get him off some medications, then evaluate and then try new medications. However, this is where the insurance company comes into play......he can only be in the hospital while it is seen as "necessary". "nescessary" is defined as them changing medications. If they are not making daily changes or changes every other day, the insurance company questions whether he needs to be in the hospital, but if you change psych meds this often you are not giving them a chance to work.
Tomorrow I will talk to the doctor and hopefully the social worker and a plan will be made. For today, he is ok. The little boys both acknowledged that they needed this break, and I am at peace with my decision. I need a healthy boy back, and this is hopefully the road to healthy.
1. I got a call saying 4 winds had a bed for him at 9 and at 11:30 I got a call saying he was struggling at school. They were "surpised to see him so upset". Are they not seeing the same child I am seeing? Are they not reading the emails I am sending....Is it too much to ask for a consistency of care between home and school.
2. Upon arriving at 4 Winds I met with a nurse practitioner to discuss medications because the psychiatrist had gone home sick. Now I am not, nor do I profess to be a psychiatrist, however, as Matthew's mom, I do believe I know him best.
His outpatient doctor increased his prozac in October because he was seeming to be very anxious and starting to show an increase in behavior. The nurse practitioner today said the dose is too high. The outpatient doctor who I spoke to over the past week had no concerns about the dose.......who is right? Who is wrong? how will we know?
The hospital last time played with a variety of doses of seraquel for Matthew settling on an extended release dose at night. He had been on a higher dose, no effect, he had been on a lower dose, no improvement. This was the target and appropriate dose less than a year ago. The outpatient doctor has not touched this dosage and sees no reason to. The nurse practitioner today wants to increase that dose. I begged her to please read through his chart.
I truly believe we can't just add meds. We can't just increase dosages. We hvae to get him off some medications, then evaluate and then try new medications. However, this is where the insurance company comes into play......he can only be in the hospital while it is seen as "necessary". "nescessary" is defined as them changing medications. If they are not making daily changes or changes every other day, the insurance company questions whether he needs to be in the hospital, but if you change psych meds this often you are not giving them a chance to work.
Tomorrow I will talk to the doctor and hopefully the social worker and a plan will be made. For today, he is ok. The little boys both acknowledged that they needed this break, and I am at peace with my decision. I need a healthy boy back, and this is hopefully the road to healthy.
Thursday, January 3, 2013
The good and the bad
The good news is that Matthew seems to have been reset after the events at camp on New Years Eve.
The bad news is that the rest of us are emotionally spent.
The good news is that I have found out that my support community is larger than I ever could have hoped for in my wildest dreams.
The bad news is that we are being lovingly supported by too many people who have also travelled this horrible path.
The good news is that I may have found a therapist for the boys and I who I like.
The bad news is that therapy is just one more thing for a single mom with 3 kids with special needs to fit into our already too full schedule.
The good news is that my knee was healing.
The bad news is that it "was" healing and now as I prepared to go back to some much needed karate, it has swollen again.
The good news is that tonight David and I will have some much needed time alone.
The bad news is that we are getting that time alone because we are going to Boston for some neuropsych testing.
The good news is that I am a mom on a mission for mental health treatment.
The bad news is that this may be the hardest mission of my life.
Thank you for the love, hugs, support and cheerleading! Trust me, it does help!
The bad news is that the rest of us are emotionally spent.
The good news is that I have found out that my support community is larger than I ever could have hoped for in my wildest dreams.
The bad news is that we are being lovingly supported by too many people who have also travelled this horrible path.
The good news is that I may have found a therapist for the boys and I who I like.
The bad news is that therapy is just one more thing for a single mom with 3 kids with special needs to fit into our already too full schedule.
The good news is that my knee was healing.
The bad news is that it "was" healing and now as I prepared to go back to some much needed karate, it has swollen again.
The good news is that tonight David and I will have some much needed time alone.
The bad news is that we are getting that time alone because we are going to Boston for some neuropsych testing.
The good news is that I am a mom on a mission for mental health treatment.
The bad news is that this may be the hardest mission of my life.
Thank you for the love, hugs, support and cheerleading! Trust me, it does help!
Tuesday, January 1, 2013
our ending to 2012....it can always get worse
I opened a can of worms with my last post, and if our family is going to be a vehicle for change, I feel like I have to share the rest of our story.
Yesterday Matthew attended a great camp program for children with special needs. This program keeps him busy, which he loves, and allows me and the other boys some time to do errands and connect with each other. While the boys and I were out, I received a phone call that 4 Winds had a bed available for matthew, but it was on a unit with 13-18 year olds. You know that life is bad when you have the option of getting help for your child, but in a place that may be more unsafe for him than home. Because of Matthew's disabilities he is 11 but acts like he is 5. One would never put a 5 year old on a unit with 13-18 year olds. Was I right to turn down that bed? Was I over thinking it? What would he learn from 18 year olds in a psychiatric hospital? Would he get hurt?
I was unaware that Matthew had been reporting to the staff that he had been stealing a lot, and when I had tried to talk to the staff in the morning about it to get some help, they had been busy, so I figured I would just talk to them at pick up time.
When I came to pick Matthew up, the director came to see me and filled me in that she and Matthew had made a plan to help him have good behavior at home that night at our New Years Eve Party and to help with his stealing. She reported to me that they had gone sledding for the day and had gone to the dollar store to pick up a toy for the program and Matthew and she were telling me all about what they bought and sledding when I saw the telling bulge in his pants pocket. As I asked him what was in his pocket he quickly got upset. He threw himself to the ground and denied anything was in his pocket.
I reached in his pocket and it was filled with candy from the dollar store. Matthew started to rage- throwing shoes at me, kicking, screaming, cursing, out of control. The director and I tried to calm him, but he was uncalmable. he knew at this point that the New Years Eve Party would not be an option for him, and he was not able to move forward.
The director and I left the office thinking that we could give him some space, and he raged after us, throwing things, yelling, screaming, scaring the other kids. The other staff and I took the other kids and D and J to another room while Matthew raged with the director. After 10 minutes the director called, she could not get him to calm down and he was a danger to himself and to her, she was recommending calling the police and the mobile crisis team, I told her to do whatever was needed.
All of this time David and Jacob, other kids and I were coloring, but we were able to hear what was going on, for Jacob, David and I this was torture. Jacob saw the police come into the building on the tv screen and his panic increased. My heart sunk to my stomach. I was being asked to stay out of the room where matthew was for fear that he would get more angry at me. I was torn between being with David and Jacob and offering them whatever comfort I could and being with my Matthew- my poor Matthew who is so lost in his own head that he had no control. He spit at the police, he threatened the police. He lunged at the police, the police took him down to the ground. I will be forever grateful that I didn't have to watch my baby be taken down by the police.
After about 30 minutes my father came to get my other boys and I was told I could come back upstairs where Matthew was. He was calm and the police were ready to call off the mobile crisis team. The director did not want mobile crisis called off for fear that Matthew would get upset again, and I agreed they should still come. I went upstairs and found a manic matthew. Chatting with the police about what was for dinner. Asking about their uniforms. Unaware of the drama his behavior had on so many around him. The staff from mobile crisis came and talked to the police and then talked to the director and me and then talked to Matthew.
The mobile crisis team was determined to help.....
Was there a bed at 4 winds? I told them no, just the one on the teen floor, which they and the director immediately thought was a bad idea.
Had I called his psychiatrist? I had, she saw no reason for a med change on New Years Eve.
They called Healy house, a short term respite program. Was there a bed? NO.
There is a hospital 2 hours from home, there may be a bed, but now he was calm. Did that make sense? no one really thought so.
He could go to the Emergency room. They would give us a place to stay for the night. He could sleep there and I could sleep in a chair next to him. Did that make sense? NO
The mobile crisis team acknowledged that we needed help, but in the end realized there is no help. I thought maybe they could at least call the hospital and get us higher on the waiting list, but they can't do that. They recommended counseling but agree that for kids with Fetal Alcohol counseling is not really the most helpful thing. You see, Matthew knows what he did was wrong, he told us all about it, in a flat, detached manner. As if he had watched it on tv. But in the moment, right and wrong don't matter. He can't control himself. He is like a different person. Totally detached.
I am going to look for a counselor for Jacob, David and I, the boys need someone to talk to so that they feel safe. Hopefully that person can help on some level with Matthew. I am going to keep my fingers crossed that the 3 week wait that I was told was likely at 4 Winds ends up being wrong. I am going to tighten our support group so that if we need help, I can call multiple people and someone can come get David and jacob quickly.
I am going to do my best to keep the house calm, that should help Matthew. I am going to hope that my families story is a vehicle for change.
You should never be in a place where you feel your son needs help and there is no help available. There should never be too many kids who need help and not enough beds. We need more options.
They say that if you put all of your problems and everyone else's problems in a pile we would all take our own problems back. Last night, I wasn't so sure. Today I am more determined to be a voice for those with mental illness. I will tell our story, we will make change. Please help me get our story told to those who can make a difference for all of the Matthew's of the world.
Yesterday Matthew attended a great camp program for children with special needs. This program keeps him busy, which he loves, and allows me and the other boys some time to do errands and connect with each other. While the boys and I were out, I received a phone call that 4 Winds had a bed available for matthew, but it was on a unit with 13-18 year olds. You know that life is bad when you have the option of getting help for your child, but in a place that may be more unsafe for him than home. Because of Matthew's disabilities he is 11 but acts like he is 5. One would never put a 5 year old on a unit with 13-18 year olds. Was I right to turn down that bed? Was I over thinking it? What would he learn from 18 year olds in a psychiatric hospital? Would he get hurt?
I was unaware that Matthew had been reporting to the staff that he had been stealing a lot, and when I had tried to talk to the staff in the morning about it to get some help, they had been busy, so I figured I would just talk to them at pick up time.
When I came to pick Matthew up, the director came to see me and filled me in that she and Matthew had made a plan to help him have good behavior at home that night at our New Years Eve Party and to help with his stealing. She reported to me that they had gone sledding for the day and had gone to the dollar store to pick up a toy for the program and Matthew and she were telling me all about what they bought and sledding when I saw the telling bulge in his pants pocket. As I asked him what was in his pocket he quickly got upset. He threw himself to the ground and denied anything was in his pocket.
I reached in his pocket and it was filled with candy from the dollar store. Matthew started to rage- throwing shoes at me, kicking, screaming, cursing, out of control. The director and I tried to calm him, but he was uncalmable. he knew at this point that the New Years Eve Party would not be an option for him, and he was not able to move forward.
The director and I left the office thinking that we could give him some space, and he raged after us, throwing things, yelling, screaming, scaring the other kids. The other staff and I took the other kids and D and J to another room while Matthew raged with the director. After 10 minutes the director called, she could not get him to calm down and he was a danger to himself and to her, she was recommending calling the police and the mobile crisis team, I told her to do whatever was needed.
All of this time David and Jacob, other kids and I were coloring, but we were able to hear what was going on, for Jacob, David and I this was torture. Jacob saw the police come into the building on the tv screen and his panic increased. My heart sunk to my stomach. I was being asked to stay out of the room where matthew was for fear that he would get more angry at me. I was torn between being with David and Jacob and offering them whatever comfort I could and being with my Matthew- my poor Matthew who is so lost in his own head that he had no control. He spit at the police, he threatened the police. He lunged at the police, the police took him down to the ground. I will be forever grateful that I didn't have to watch my baby be taken down by the police.
After about 30 minutes my father came to get my other boys and I was told I could come back upstairs where Matthew was. He was calm and the police were ready to call off the mobile crisis team. The director did not want mobile crisis called off for fear that Matthew would get upset again, and I agreed they should still come. I went upstairs and found a manic matthew. Chatting with the police about what was for dinner. Asking about their uniforms. Unaware of the drama his behavior had on so many around him. The staff from mobile crisis came and talked to the police and then talked to the director and me and then talked to Matthew.
The mobile crisis team was determined to help.....
Was there a bed at 4 winds? I told them no, just the one on the teen floor, which they and the director immediately thought was a bad idea.
Had I called his psychiatrist? I had, she saw no reason for a med change on New Years Eve.
They called Healy house, a short term respite program. Was there a bed? NO.
There is a hospital 2 hours from home, there may be a bed, but now he was calm. Did that make sense? no one really thought so.
He could go to the Emergency room. They would give us a place to stay for the night. He could sleep there and I could sleep in a chair next to him. Did that make sense? NO
The mobile crisis team acknowledged that we needed help, but in the end realized there is no help. I thought maybe they could at least call the hospital and get us higher on the waiting list, but they can't do that. They recommended counseling but agree that for kids with Fetal Alcohol counseling is not really the most helpful thing. You see, Matthew knows what he did was wrong, he told us all about it, in a flat, detached manner. As if he had watched it on tv. But in the moment, right and wrong don't matter. He can't control himself. He is like a different person. Totally detached.
I am going to look for a counselor for Jacob, David and I, the boys need someone to talk to so that they feel safe. Hopefully that person can help on some level with Matthew. I am going to keep my fingers crossed that the 3 week wait that I was told was likely at 4 Winds ends up being wrong. I am going to tighten our support group so that if we need help, I can call multiple people and someone can come get David and jacob quickly.
I am going to do my best to keep the house calm, that should help Matthew. I am going to hope that my families story is a vehicle for change.
You should never be in a place where you feel your son needs help and there is no help available. There should never be too many kids who need help and not enough beds. We need more options.
They say that if you put all of your problems and everyone else's problems in a pile we would all take our own problems back. Last night, I wasn't so sure. Today I am more determined to be a voice for those with mental illness. I will tell our story, we will make change. Please help me get our story told to those who can make a difference for all of the Matthew's of the world.
Sunday, December 30, 2012
When there are no beds at the Psychiatric Hospital
We have been home on vacation this week and we have ridden quite a crazy roller coaster. At the beginning of break I felt like things were going actually better than they had been going during the school year, however now I am having to face the reality that things can't be qualified as better or worse, but actually just different.
Matthew's behaviors have become more extreme and more concerning:
1. He stole $19 worth of candy at a store when we were shopping. Now many have said, "all kids do this"however for Matthew it is different.
** he does not understand that taking things is wrong
** no consequence I have imposed has had an effect on him
** his response to going back to the store and paying for the candy was, "it's ok, they gave me money back".
You can't teach money concepts to a child who doesn't understand it. To him the $19 was equivalent to the $1 bill he received as change. It is all made of paper, all green and essentially all the same. We have talked about money for years, we have spent money together, we have talked about what he can afford and can't afford when he has a certain amount to spend. He can do this all with anyone, but he doesn't see a difference between a $3 skateboard toy and a $30 skateboard so he does not understand the value of items and he doesn't actually value them differently.
2. He is threatening his brothers. This is the worst thing for me as a mom. It is hard to see Matthew so upset that he starts talking about hitting his brothers. It is harder still to see his brother so scared. There is nothing I can do to make it better for them in the moment. When things got really bad on Saturday night I had a friend come pick up J and D, but that still causes them stress and trauma. They still were here for the beginning of the intensity and they worry when they leave with a friend about what is happening when they are gone.
3. He stole food at his grandparents house today. All he has to do is ask for food and he can have something. Sure, sometimes he is offered just a piece of fruit, but that is still something and if he is hungry, he will eat it. He took handfuls full of crackers at his grandparents and shoved them in his pockets. When we found them he screamed, he cried, he yelled, he denied, and he tantrummed. Finally, the truth came out and he was so upset.
In many ways I know that for him to have taken food from his grandparents, the problem is beyond his abilities. It is all he thinks about. All day and all night he is obsessing about food.
That said, no matter how much you obsess, you can't just take what you want. You have to ask. He has to check in with an adult. Yet in this house with 2 adults who know everything that is going on, he managed to get to the crackers and shove them in his pocket and lay on the couch eating some.
For me it was reassuring that even 2 people cannot always monitor Matthew. It was also a sad, sad reality. He is typically on his best behavior at my parents house because he wants to make them happy. To see that today he couldn't even keep it together at their house says things are getting bad quickly.
4. Another one of Matthew's obsessions is cigarettes. Yesterday Matthew was at Target with his respite provider and he said he had to go to the bathroom. He went into the bathroom and apparently found someone with a cigarette in their mouth. Apparently while the man was using the urinal Matthew told him he shouldn't smoke. You can imagine how well this went over, especially given that this man was not totally stable himself. The many yelled at Matthew and Matthew quickly ran from the bathroom.
This raises more issues- he is an 11 year old boy, he has to be able to use the boys bathroom. However, in the boys bathroom there is no one to monitor him and he cannot take care of himself. In this case, how is he safe? He isn't. And again, with the respite staff it was just 1:1, there were no other kids to take care of and yet he still struggled.
I decided after the tantrum Friday, Saturday and today that Matthew is not safe at home. This is the hardest decision a parent of a child has to make. There is no line in the sand that says, "yep, this is when your child needs to be hospitalized". It is a gut feeling. It is the feeling for me that my other boys are struggling too much. It is Jacob's need to not leave my side. It is Jacob crying, and David getting quieter. It is Jacob chewing on his sleeves, and David picking his fingers. It is my own feeling that without help we may not get through the night without a tantrum.
So I worked up my nerve and I called 4 Winds hospital. I was ready to take Matthew tonight. We need help, my boy is screaming for help......and there are no beds.....there may be a bed tomorrow, but there may not. Who knows how long it will take until there is a bed? How long do we wait?
Are we safe to wait? I will make us safe....I will call for help. I will set up playdates for the younger boys. I will schedule breaks and we will do our best. But, if you needed any other kind of medical help, you would go to the ER and there would be help. There is no ER to go to. There is no help. Our system is broken, when a little 11 year old boy is in need of help and there is simply no help for him!
I am sharing our story because we have to have a change. Mental health needs have got to become a priority for our country. My son did nothing wrong to deserve his struggles, and on the right meds he may be healthier. If any of you, know anyone, or know someone who knows someone, please speak up. We have to make caring for those with mental health needs a focus so more parents can hit bottom, and make that call to the psyciatric hospital and get their child help, rather than coming home and worrying how many days, weeks, or months it will be before a bed is available.
Matthew's behaviors have become more extreme and more concerning:
1. He stole $19 worth of candy at a store when we were shopping. Now many have said, "all kids do this"however for Matthew it is different.
** he does not understand that taking things is wrong
** no consequence I have imposed has had an effect on him
** his response to going back to the store and paying for the candy was, "it's ok, they gave me money back".
You can't teach money concepts to a child who doesn't understand it. To him the $19 was equivalent to the $1 bill he received as change. It is all made of paper, all green and essentially all the same. We have talked about money for years, we have spent money together, we have talked about what he can afford and can't afford when he has a certain amount to spend. He can do this all with anyone, but he doesn't see a difference between a $3 skateboard toy and a $30 skateboard so he does not understand the value of items and he doesn't actually value them differently.
2. He is threatening his brothers. This is the worst thing for me as a mom. It is hard to see Matthew so upset that he starts talking about hitting his brothers. It is harder still to see his brother so scared. There is nothing I can do to make it better for them in the moment. When things got really bad on Saturday night I had a friend come pick up J and D, but that still causes them stress and trauma. They still were here for the beginning of the intensity and they worry when they leave with a friend about what is happening when they are gone.
3. He stole food at his grandparents house today. All he has to do is ask for food and he can have something. Sure, sometimes he is offered just a piece of fruit, but that is still something and if he is hungry, he will eat it. He took handfuls full of crackers at his grandparents and shoved them in his pockets. When we found them he screamed, he cried, he yelled, he denied, and he tantrummed. Finally, the truth came out and he was so upset.
In many ways I know that for him to have taken food from his grandparents, the problem is beyond his abilities. It is all he thinks about. All day and all night he is obsessing about food.
That said, no matter how much you obsess, you can't just take what you want. You have to ask. He has to check in with an adult. Yet in this house with 2 adults who know everything that is going on, he managed to get to the crackers and shove them in his pocket and lay on the couch eating some.
For me it was reassuring that even 2 people cannot always monitor Matthew. It was also a sad, sad reality. He is typically on his best behavior at my parents house because he wants to make them happy. To see that today he couldn't even keep it together at their house says things are getting bad quickly.
4. Another one of Matthew's obsessions is cigarettes. Yesterday Matthew was at Target with his respite provider and he said he had to go to the bathroom. He went into the bathroom and apparently found someone with a cigarette in their mouth. Apparently while the man was using the urinal Matthew told him he shouldn't smoke. You can imagine how well this went over, especially given that this man was not totally stable himself. The many yelled at Matthew and Matthew quickly ran from the bathroom.
This raises more issues- he is an 11 year old boy, he has to be able to use the boys bathroom. However, in the boys bathroom there is no one to monitor him and he cannot take care of himself. In this case, how is he safe? He isn't. And again, with the respite staff it was just 1:1, there were no other kids to take care of and yet he still struggled.
I decided after the tantrum Friday, Saturday and today that Matthew is not safe at home. This is the hardest decision a parent of a child has to make. There is no line in the sand that says, "yep, this is when your child needs to be hospitalized". It is a gut feeling. It is the feeling for me that my other boys are struggling too much. It is Jacob's need to not leave my side. It is Jacob crying, and David getting quieter. It is Jacob chewing on his sleeves, and David picking his fingers. It is my own feeling that without help we may not get through the night without a tantrum.
So I worked up my nerve and I called 4 Winds hospital. I was ready to take Matthew tonight. We need help, my boy is screaming for help......and there are no beds.....there may be a bed tomorrow, but there may not. Who knows how long it will take until there is a bed? How long do we wait?
Are we safe to wait? I will make us safe....I will call for help. I will set up playdates for the younger boys. I will schedule breaks and we will do our best. But, if you needed any other kind of medical help, you would go to the ER and there would be help. There is no ER to go to. There is no help. Our system is broken, when a little 11 year old boy is in need of help and there is simply no help for him!
I am sharing our story because we have to have a change. Mental health needs have got to become a priority for our country. My son did nothing wrong to deserve his struggles, and on the right meds he may be healthier. If any of you, know anyone, or know someone who knows someone, please speak up. We have to make caring for those with mental health needs a focus so more parents can hit bottom, and make that call to the psyciatric hospital and get their child help, rather than coming home and worrying how many days, weeks, or months it will be before a bed is available.
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