Thursday, December 9, 2010

Life inside the fishbowl

So much has happened in last 4 months since school started. My son Ethan has taken a turn for the worse. As of Tuesday, December 7th, I placed Ethan back in Loma Linda's Behavioral Medicine Center. We are at a breaking point. With no respite, I am at a loss as to what to do with him. My other children and I are the victims of his rages. Most telling, was an incident that occurred yesterday on my way from Inland Regional Center to the hospital, Ethan was punching my 3 year old as he screamed, "I said I'm sorry." He was angry because my son, Aeron,  told him he was naughty because he had hit him. Of course, this set him off. It's a cycle with no end. It's so sad and destructive. His need for help is beyond what I am capable of providing.

The reason I went to Regional Center was to get the paperwork to apply again for services. I met with 3 women employed there. I am completely disgusted with the Regional Center. Even though they are tasked with helping handicapped children, I understand their criteria, they are heartless. What happened, conveys an utter lack of human decency. I brought my two youngest, Ethan and Aeron (3) into the building with me. I figured I would cut out the mail carrier and pick up the paperwork in person. Plus I would have a face to face opportunity with the staff. While waiting for a representative from the intake dept., I took the boys to the bathroom. Ethan and I used the restroom. And when it came time to wash our hands, Ethan wanted to continue to play in the water, and had a meltdown. He ran out into the lobby and hid while the IRC representative watched. I was unable to have the most basic conversation with her. So, we went to some kind of room outfitted with toys to the side of lobby. Ethan continually tried to escape, and was screaming, kicking and yelling. I explained the situation to the staff member and she went to go get some of the paperwork to file an appeal. I also had with me a note our psychiatrist, Dr. Robert Gordon had written. The note attests to the fact that Ethan has autism, appealing directly to the fact that they strictly address DSM 299.1's definition of autism. When the staff member came back, once again, she brought with her one of the IRC's psychologists and the case manager who compiled Ethan's evaluation.  The case manager explained they have a very comprehensive report that solidly supports the fact that Ethan's problems are behavioral not the result of autism. She took a copy of Ethan's Dr. note, but stressed that their report was conclusive and little could be done to change their decision, even 1 Dr's opinion. They handed me the appeal packet placed in an evelope, and another two sheets of paper with "resources" for behavioral help. By this time, Ethan had kicked off his shoes and socks. He continued kicking and screaming. They tied together Ethan's shoes and tucked his socks in his shoes, and handed all this to me and escorted me to the door without even an offer of help to my car. I carried my son, kicking and screaming from the building over my shoulder, all the while he was beating my back with his fists. My littlest one followed me in the rear as I struggled, juggling all the items to the car. 

I am disgusted by their lack of human decency. I had no expectations, at least I try not to. But most professionals I have met with, when faced with my son having one of his outburts, at least offer an escort to the car. They made sure to escort me to the door, see that the lock engaged, and returned to their desks.

I went directly from IRC to Loma Linda. As I drove, I spoke with their intake rep. I was relieved to hear they had room for him. 

Monday was also an eventful day. Ethan had a noon appt. with our psychiatrist for a med check. From there we stopped in at a friend's flowershop. She and I used to attend the same support network when it used to meet at the CBC, where I met you. She gave me the info of another person who might help us in our efforts to get the district to help. She also had to hire the services of an attorney. When I finished up with her, it was time for Ethan's therapy appt. at 2:15 at Hope Inc., with Jamie Juarez. This therapist is a marvelous woman. She has helped us in so many ways. She gave us the $ for our consult with Valerie Vanaman. She referred us to our advocate, Sandra Marzullo. And, she is paying for a cleaning crew to come into our house on Friday. We had our 45 minute therapy session in which I filled her in on all the developments. And Ethan, after tiring of the toys in Jamie's office, decided it was time we move into the motor room. We had a few minutes to play. When it was time to leave, he went into a rage again. 

At that point, Jamie came back and asked what I wanted to do. I said I did not know. She offered to call the police, and have him taken in on a 5150 or they could just help me to the car. I haven't been all that impressed with the caliber of Loma Linda's help. The Dr. only served to  put Ethan on meds that made him more psychotic and then sent him home for us to deal with. When I later called with some follow ?'s. He doesn't return calls. Once you leave the hospital, you are done. You receive no more help or services. 

I asked Jamie to have her therapist and other staff member to help me get Ethan to the car. He refused to sit in the car. A struggle ensued in which he hit his head several times, once on the door as we left the motor room and a second time in the car as he struggled and refused to be seated. At that point, I was so tired by all this struggle, I consented to calling the police. I face these meltdowns 7-9 times daily. There is no respite, except when I go to work. And even with that, that is no respite. I am tired- physically and mentally. I am having troubles sleeping, as evidenced by the late hour I am finishing up this email. My house looks like it threw up on itself. To be honest, I don't want him back home. If we had help, I would want him home. But we don't and I am at my wit's end. We struggle in silence, I'm a prisoner in my own home. I am a prisoner to my son's rages and violence, as are my children. I'm basically suffering form PTSD. I"m done.

It took 2 men and my therapist to restrain Ethan. He kicked and screamed and acted like he was possessed of a demon. I sent my youngest back into the motor room to be supervised by a staff member. Ethan repeatedly knocked his head on the asphalt as a result of his flailing attempted to bite, kick and punch the staff, so we moved him to the front lawn to await the police. The police officer came. What a specimen of uselessness! He saw the situation, witnessed my son's violence and refused to take him in  on a 5150. Instead he elected to have the paramedics come and check out Ethan's head. It was fine, of course. The Fire Dept. came accompanying the ambulance. He was cleared by the paramedics. Of course, he was quite the spectacle. One of the firemen, felt the need to comment, that it appeared that my son lacked discipline. My husband, whom I had promptly called, had arrived. By this time, he had managed to calm Ethan down a bit. At this remark my husband calmly defended himself and then our therapist lit into the fireman. 

I had to leave for work by this time. You see, as soon as I realized the situation, I called Winco and let them know that my son was probably going to be taken in my police or ambulance to Loma Linda. The receptionist/office manager/mngmt person replied that even though this was a grave situation, I would still be given 3 points against my record if I missed my shift. I had been late twice prior to that. Each time it results in points against me. I had 4 points at that time. The first time I was late, was entirely my fault. I was ignorant and inexperienced with the posting of the schedule. ALL the other times I have been late have been a result of either a meeting in which it was decided that we would sue the school district or the latest occurence or Monday's episode. But, of course, yesterday I was 5 minutes late again, because of traffic and logistics. There is not enough of me to spread around. I had to drop off my 3 year old son at my friend, Tracee's house, travel the 30 minutes to Loma Linda, visit with Ethan, talk with the staff, and travel back and pick up my son, wait for my husband get home and speed to work. Monday, I lost it at work and ended up crying for 20 minutes as I talked with one of the shift leaders. I told her of our situation. She was horrified. But she was somone I could talk to, it helped a little. I have asked for leniency. I have explained that I want and need a job. My hope is that eventually I will be able to get benefits (which are available to employees who work a min. of 20 hours a week). But, there are only so many points you are allowed during your 6 month probation period. That's it. I may be fired.

So, yes, I decided to flee the scene and go to work. I was 10 minutes late, I had to wait for the fire dept's huge truck to leave. Of course they had to bring the biggest one. It is also the most difficult to navigate. I did show up for my shift. I left my husband to deal with the situation. The officer refused to take my son in to Loma Linda even though 3 witnesses attested to the seriousness and violence of the situation. Peter had adequately calmed Ethan. He took him home, a ticking time bomb which erupted the next day.

Tuesday I took him down and and admitted him myself. I don't know what to do. We don't qualify for services. I have talked with therapists and social workers at Loma Linda. I am asking them for an MRI. I still can't get my insurance to give me a referral for an MRI with sedation. I have a temporary respite from Ethan, with him at Loma Linda. But now I am fielding all the calls- calls from  the hospital therapists, nurses and insurance. The insurance will cover temporary residential care. But will not cover indefinite residential care. We have to wait 'til the first of the year for Valerie to file the suit. I agree and understand the insurance's point of view. I have become friends with the insurance case worker woman/therapist on the other end of the line as I have explained all our efforts. She wants to help, but there is only so much the insurance can do. She admire all that I have done and continue to do to help Ethan.

So, that's where I am. I get a little respite from Ethan while he is in the hospital. But that opens another can of worms. I can visit him once a day. And at that time I can get a report and a visual of how things are going. We have also asked the hospital to help us with his blood work. We want Ethan's blood karyotyped to see if he has Kleinfelter's syndrome (XXY) which would help explain his lack of executive functioning. The Dr. on staff, disagreed with my husband's request saying it was ethically questionable. Wouldn't it be a good idea to check and see? If Ethan does have this genetic condition, it would explain his difficulties. 

I am tired and frustrated and feel defeated. I feel like these obstacles are insurmountable. Every door I turn to for help is locked or shut in my face. Insurance won't deliver the MRI. The hospital, a poor bandage, is useless except for providing safe respite. But even that is questionable because of all the questions and forms to be filled out and answered. Because, of course, the first conclusion is of family dysfunction. Not of a true sickness in the child. I spend hours answering the same ?'s over and over again, with no results. In the end, the worker sympathizes with me and says they will "help." No help ends up coming. It's all words, no action.

Tomorrow my husband, who has taken the day off from work, and I will go see the county's school programs. They are ED programs. I have heard "great" things about them already. They will not help Ethan. They are based on the school model of instruction not a therapeutic model of instruction. Our therapist has gone to the schools we are to visit. She went to look at one of the students who wanted to be placed at her site. In addition to counseling services, she runs a NPS. She observed the kid and rejected him. My thoughts are that Ethan will only add more bad behaviors to his already lengthy repertoire of bad behaviors. Additionally, he will not have access to the daily therapy he so desperately needs. My husband only has so many sick days and then they will deduct from his salary. He cannot be home full time to mange Ethan.

Our lawyer Valerie Vanaman has instructed us to go see the school. We will. I have my checklist of requirements, as sent to me by our advocate. I'll forward them after sending this email. They are all backed up by educational code references. Of course, the school won't be able to provide all of them. 

Ethan will be released home again in a few days. And we will start the prison sentence all over. 

I can't tell you the # of times people tell me my son and our family is in their prayers. Please don't misunderstand me. I am a woman of faith. I know God lives and loves us. There is a plan in all this. I KNOW it.
But in my perspective, faith without works is DEAD! Prayers are great, but we NEED help. Prayers will help, but it is not an all encompassing bandaid. I am tired. I don't want my son back at home. He is abusing his siblings. I am being abused by him. It takes all my self control not to beat the tar out of him. Some days I have to sedate him just to get through the day. My life feels as close to what purgatory might be like. We have no quality of family life, except in that revolves around my son. I am doing him no favors by keeping him at home, placing no demands on him. I walk around on egg shells dreading the next meltdown. I can't educate him. We are in this cycle of destruction.

I am to the point that when Ethan melts down after he comes home, I am either going to bring him back to the hospital or call the police to take him back on a 5150.

I can't even begin to think of Christmas. What a joke! I don't want to put up a Christmas tree. I don't want to buy presents. All I see is a filthy house, a destructive, demanding child who requires 24/7 supervision with no help in sight. I told my husband the other night that I want to have the Grinch's Christmas tree this year. I would love to cancel it. Additionally, what pains me is that my other children need Christmas. They need that normality and deserve those healthy, typical experiences. So, I will dig down inside myself and find the energy to put all that stuff up. But, my heart is not in it. Just like it was not in Thanksgiving. I didn't want to cook dinner. All I saw was all the work required. Try to clean the house, buy the food, prepare the food, eat the food, clean up the food and work. Where's the joy? When do we have fun? When can we get some down time?

In all of this mess, a big blessing that came our way recently. An Orthodox Catholic Sunday school is adopting our family for Christmas. Two of my friends are members of their congregation. They will help with Christmas for the kids. And, our therapist, whom we owe hundred of dollars to, is paying for a cleaning crew to come in and help me Friday. These a two big blessings. It will help us a great deal. 

It may sound like I am having quite the pity party, I try not to. I am a strong individual. Lesser women would have already given up. I am trying to faithfully bear my burdens. I am trying to do my part. But, I am done. I don't want this burden anymore. When can I say enough without sounding and feeling like I am giving up and failing my child? That is my daily struggle, besides my struggles to maintain my grip on my own sanity. 

I am to the point of writing talk show hosts like Oprah Winfrey and Ellen Degeneres to plead for help. I don't know what else to do.

If you have any suggestions or know of any sources for help, feel free to comment and leave a message.