The septic bite.

Who'd have thought that one bite from a human could cause so much pain for so long.  This is what Joseph did to me on Easter of 2015.
Here are posts I made regarding this bite:
I have been putting this off for several days. I've hidden my wounds because I on some level I feel shame. I feel anger. I feel hurt. I am ashamed that I cannot seem to be able to protect myself from assaults by my own son. 
This is what happened on Easter Sunday in a SUPERVISED visit at the facility Joseph lives at because he is too violent to live at home. 
This is what the face of Autism Awareness looks like. This is what may happen to me when I visit my son. This injury or similar has happened to me three times in less than a year. Last summer it took 4 staff to extract him from me. In September, I needed an emergency visit because he dropped me to the floor with his fingers gripping my hair at the scalp. He then used this as a lever to kick in my scapula from the back.

I am NOT a victim. I will not hide it. I will not make excuses. Autism has robbed me of my career, my health and my connections to other people.
Yet, I continue to advocate, support, teach and love.
I AM A Peaceful Warrior.
Nuff said,
Go about your day

— feeling determined.

Days 6 and 7.
I was to attend school this weekend. Yoga Teacher Training has been healing for me on many levels. But struggling with muscle spasms and an inability to manage them properly away from home. I believe I will be rounding a corner. Tomorrow will look much better.

 — feeling hopeful.

Day 13. Deep fascia infection seems to be clearing up. Of course the antibiotics I needed to take has cleared out my system of anything good. Waiting results from x rays taken to see if the bone is infected. Shaky and wondering if I can ever safely visit my son. I am doing well to stay as positive as I am.

Day 21: Infection gone. I am left with a rather large hematoma and muscle spasms. Dropped into a rather deep depression though. Some thoughts and energy sent my way would be appreciated.

I

New World for Joseph

There have been only a handful of people in Joseph's life gifted with the ability to connect with Joseph in a very meaningful way.  One of them is his current Head Classroom Teacher, Tiara.

She told me a story recently about Joseph and I asked her to write it down for me so that I may add it to his story here.
It is amazing.  Hope you enjoy.

Joseph’s Thoughts on His Future:

Joseph really enjoys the song “Clint Eastwood” by the Gorrillaz.  He calls this song “Future is Coming.” Upon listening to this song one day in the classroom, I decided to use the lyrics as a prompt to talk to Joseph.  I used a white board to write questions to Joseph, leaving blanks for his responses.  Joseph was not prompted to respond, but did so independently.  He did not chose to write, so I scribed the responses for him.  The white board read as follows.  Joseph’s answers are in green.

Your Future is Coming On (From the song we had just listened to):

In the future, I will be ___a friend___.

In the future, I will work at _____discipline_____.

In the future, I will live at _______hard_______. (Joseph stated “hard life” here but prompted me to erase life as I wrote it)

(After a few moments of silence and some staring away from me and the board)

I am thinking about ___new world___.

You Can't Rush Art

I must remember to teach Joseph how to transfer a picture onto canvas board.  Maybe a new slide book.  During this painting,  I turned a photo from online art into a paint by number. I visited KidsPeace and had him paint a color at a time, slowly creating from light to dark.  He and I bantered as he painted.  At one point I  offered  him a "Script" of "You Can't Rush Art".  It stuck.  Although I do not think he uses this much with people other than me, he and I share our little one liner as our private communication.

backlash - PTSD

Well, Ive just spent the last few minutes bawling.. I will nap soon. This is the first opportunity Ive had to be by myself since Josephs meltdown on Saturday. I guess Ive been feeling like hes doing so good.. hes made such good progress, and then to see him regress so quickly and to be in fear of being alone with him again.. well, its just overwhelming. This may be depression talking but
sometimes I wish Joseph would just get it over and kill me in one of his rages so I wouldnt be in so much pain over the teeter totter life his issues has put us through.

Joseph is going downhill

Saturday we picked Joseph up and kept him overnight. The visit started out great. Family went fishing. Ate burgers, Joseph went online to Power Rangers site. Then he asked for the Bionicles site which is a banned thing for him now. I told him no and he did it anyway. It took both Jon and I to turn off the computer and get him away from it. He laid on the floor fingers in ears and screeched and screamed. Then he ran to put on his shoes and bolt out of the house. Next was kicking slapping faces. We had to blanket wrap him. It took the two of us. We finally got him back down to the bedroom. He started to calm then started up again throwing things at me. Another wrap, kicking slapping trying to bite. The whole thing lasted about 50 minutes and both Jon and I were exhausted. This meltdown was very reminiscent of why hes in placement, and Im sad to see it return. What does this mean? I already cant take him on a drive alone for fear that he will attack me while Im driving. Does this mean now I can NEVER be alone with him? I certainly wouldnt have managed by myself last night

Pop Rocks and Joseph

Few words describe a part non verbal exchange. Spirit exchange
The staff at Joseph's group home arranged a candy hunt. I helped him find all the wrapped up shapes (ghosts, spiders, pumpkins) with his name tags. All the kiddos joined at the dining room table to tally their caches.
In Joseph's cache were four small packages of pop rocks. When I saw them, the devil came out in me. Joseph can be the king of sensory "what the f*(#?" And since he is like my little toy, always experiencing things in a new light and with a ready audience of staff and peers, I opened up a package.
"Joseph, these are Pop Rocks.. open up your hand and Ill give you some"
out came the hand, he licked them up.
I expected the face of a lifetime and the need to shake them off. Instead, he kept opening and closing his mouth, listening to how they sounded mouth opened, mouth closed. he listened to them in his hand. He put his mouth up to my ear so I could hear them.
Joseph picked up another package and slid his pointing finger along some writing on the package.
"This" Joseph said (meaning please read this)
"Taste the explosion" I read
He repeated with inflection and had me open another package.
All four packages were experienced with glee and excitement, many times exclaiming "Taste the Explosion" and letting me experiencing the popping by having me listen.
I don't know who had more fun between him, myself, staff and peers. Truly Joseph shows us all a new way of being truly alive.

My otherworldly boy. He is a ghost. Sees the unseen, dances to music unheard, creates worlds in his mind which I cannot fathom.
He is me, and yet he is snatched away from me. I know the culprit and I refuse to make peace. But the pain of this turmoil blankets with a sluggish goo. I wallow in it unable to free my fragile wings to escape.

Early 1996

I believe this was Joseph at around 9months. He sure does look happy. Things were pretty happy then. We had no idea Joseph would be diagnosed with Autism, we had bought our first home. Both boys were active, loving and growing.

October 1995

Joseph is born.
I never knew contractions could hurt that bad.
I am a 4'11' woman with 8 1/2 lb baby in my uterus. For weeks when he moves, I drop to the ground and writhe in pain. I feel he is beating me up from inside.
My pregnancy with Joseph is emotional.
My pregnancy with Nathan, born in December of 93, ended 5 weeks early. I had something called HELP syndrome. HELP syndrome is similar to eclampsia with liver function issues, edema. What saved Nathan was the fetal monitor in the hospital. I had been sent to receive fluids after vomiting for 10 days. While on the monitor, Nathan stopped breathing, murconium asparation. An emergency C section and a day of oxygen brought my fighting boy along wonderfully. I continued to get sicker over a period of several days. Basically nathan and I were both at risk for our lives.
I had also lost my mother to cancer during my pregnancy with Nathan in November. When nathan was 5 months old, Jon and I left the only area I knew, the suburbs of Chicago, to move to Maine.
While pregnant with Joseph, depression was constant. I remember planning to have him, and then commit suicide. Depression had been an issue all my life. I believe I was at 7 months when I informed my health practitioners of how low I had become. It was recommended I try Prozac. Prozac was a miracle to me. I suffered from dizzy spells. I drank water from a camp. What stupidity. Coming from Chicago, all water was city water. I had no concept of well water. The water at this camp came directly from a lake. It was a hot, dryer summer that year. Giardia was the diagnosis after several days in the hospital. I thought for sure I was coming down with HELP syndrome again. I remember Jon all excited when the ultrasound revealed Joseph to be a boy. "Way to go, Mom!" he said.
A later ultrasound had me back for another one. The measurements of Josephs head showed his head to be bigger than normal at the time of development. I look back at this now and wonder if this was a sign of differing development. And what of prozac?
It was decided Joseph was too big to come out the traditional way, so it was a C section again. He was perfect, no birthing problems. I was awake for the C section this time. I felt connected to him immediately.
Back in my room the nurse was ready to take Joseph to the nursery. I remember saying "That baby is MINE". I was determined to make up for the time Nathan and I lacked in bonding as I was so sick with his birth. Joseph slept with me in the hospital bed, prompting many years of attachment at the hip. At age 12, our relationship is the same.
The first few months...
I remember a particularly bad night when Joseph was about 2 months. He cried for 4 hours straight. I believe I called the doctor and was told to hang in there.. it was colic. There were hours of "bouncing" him in my arms. It seemed the more vigorous the movement, the more he relaxed. Joseph took the "bouncing baby boy" expression quite literally.
I also rushed Joseph to the ER at around 2months in fear he was having a seizure. I was laying on the couch (my usual position for sleeping) with Joseph in my arms. He sort of opened his eyes and did this flutter and shake. He was checked over at the hospital. Nothing seemed amiss. The professionals ruled it out as a sort of nodding off, half sleep body reaction.
I can tell you from personal experience that Josephs autism had nothing to do with vaccinations. Although I do not negate parents who believe their children are adversely affected, this was not the case with Joseph.
Joseph seemed to need me all the time. I couldnt put him down, noone else could comfort him but me. It was about at 4 months when the colic let up, and he was much happier. In fact he was happier than I expected. He seemed to tell himself jokes. He was always giggling at some private conversation.
Josephs development seemed very normal if not advanced. He was up and running before we knew it. Scaling furniture and having dressers topple under his climbing was common by about 8 months. He loved being tickled. The more you tickled. The more he loved it.

Making Peace - Writing it Down

I dont want to be angry at God anymore. I want peace.
There is no closure with Autism. It is like an open gaping sore. The very air we breathe wafts across the sore. It feels like pins and needles. Never at rest. The beautiful boy I know just turned 12. In a year, an official teenager. What man will he become? I see hints of him now.
Josephs story is complex. It will take a long time to write it, to feel it. But it needs to be told. I am alone in a bubble of misery. Temporary albeit, but misery. In another day, another reality (things really do change that quickly) I will be ecstatic, elated. Joseph's unique abilities charge me with an understanding of life, of all things. But the wonderful gift given to me at his birth, curses me. God gave me the most precious gift in the world, but I cant have him, hes not mine. Joseph has spent 4 long years in and out of psychiatric facilities, hospitals, group homes with periods of trying desperately to transition him home. My life is broken without him. I am incomplete. He is transitioning to a new group home in November. This is supposed to be a more permanent placement. I am in fear of new staff, another transition for him, me. October is never a gentle month on Joseph or myself. It is filled with memories of broken promises from my childhood, Joseph's birth, the natural rythym of dormancy. We experience it - He and I on a molecular level. And for some reason, we always go down fighting. I am learning Buddhism, Acceptance is key. But I am a long way from it.
This story will be written in Journal style.
It will take a long time to organize it.
I will ramble. and not make sense, I will reference people, books, old journal entries and issues. This work will require footnotes and reference notes. Because of length I will provide an * on facts and items of historical importance. The rest will be bung. Is that a word? You may skip bung and only read *. The choice is yours.

Welcome Home Joseph

Here he is - red eye and all. After 19 months of being away from home. He spent 8 months in a psychiatric facility with an autism unit. Then almost a year in a local group home preparing him and the family to receive him back in our house. This was a long process. The family had become PTSD victims from all the explosive, dangerous and violent outbursts from Joseph over the years. I contracted with the best Behavioral program in the area to provide care for him in the home. We went over safety plans and readjusted our homes in terms of securing entrances and exits as Joseph bolts often. We labeled the house, set ground rules and wrote "social stories" to help him understand safe behavior. We developed schedules and communication tools as Joseph still has the expressive language of about 2.5years. Its alot of work. Many people confronted me on why I would allow his insanity back in our lives. Two reasons. He is my heart and this is what the Department of Human Services wants: kids at home. Lets hope his gains will continue to grow.

The New News

Joseph will be returning home April 2, 2007. He has been in some sort of hospitalization or group home since July 26, 2005. This has been a long, slow, painful process for the whole family. We are excited and anxious to have him return home, and sometimes I dont know how I am going to manage once he gets here.
One thing that I have committed to is doing an ayurvedic body cleanse and excercise program during the same time Joseph transitions home so that I can force some self care. Currently I am praying and repeating mantras to remove all that is in my way of making positive changes. A slow housecleaning is part of this project also.
During the month of March we are having Joseph stay one additional school night per week at the house so we can slowly get used to a new routine, stressers. It worked well the first couple of weeks, but now Joseph is becoming anxious to move home and has become irritable and cranky. For him irritable and cranky looks totally out of control to the rest of us. So, it is difficult to stick to the resolve of bringing Joseph home while watching him slowly become troublesome.