The sweet life

On Thursday April 18th as stated in a previous post, I had to call 911 due to Preston’s public rage. Thank GOD the man who owned the center was understanding and kind and said that anything he broke was minimal and replaceable and I shouldn’t worry about it. ūüôā My heart was so happy, I was so afraid of what that could have been. Thank you again to Jeff Valley of Valley Tent rentals.¬†

Friday April 19th, he is getting admitted to U of M in Ann Arbor. I know this is not the answer that I have been looking for but I really have no other option. It is suggested from GHS (Community mental health) that I admit him to the inpatient unit on the adolescent psychiatric unit. Of course i say yes, if I say no.. NON COMPLIANT on my part. There is so much to say about his visit but I don’t have all day. Here are the very basics:¬†

The floor is full of teenagers who are homicidal and suicidal. 

They are not experts by any means in autism

They have VERY limited experience with autism

They did not/do not know what ABA therapy is

They do not/did not understand what “stimming” is

They are mostly inexperienced in dealing with autism. 

They admit this and I know¬†the reasons for sending P was to let me “get a break” and to basically see if they could change his medications or notice any severe types of psychosis of any shape or form. Now I am not in any way “downing or bad mouthing” this unit. What they do fro these teens is amazing. It was an amazing unit and wonderful staff with obvious¬†experience¬†when dealing with emotionally/ mentally/ chemically imbalanced teens. The floor was clean, under control, and organized, for teens with issues. Not a severely autistic child who is completely non verbal who suffers from PTSD amongst Lord knows what else.¬†

So my goals knowing this when he was admitted were to get the following: A neurological exam/consult, a GI exam/consult, and a letter that I can take with me to my hearing stating that preston would benefit from intensive¬†therapy¬†for people who specialize in autism like for example, Great lakes center in kalamazoo. Duh.. no brainer….

After daily visits in Prestons week stay I had to fight for consults almost hourly and that is no¬†exaggeration¬† Eventually upon his discharge, I was promised a letter of support where the head doctor met with me and I made sure that it was typed word for word what I needed on that letter. So in a nutshell thats that. A week of¬†unnecessary¬†stress and time and money on my part. A week that I wasn’t able to do my “full time job” of working in¬†residential¬†placement. I was supposed to sleep and get a pedicure. I had dinner that i sat in a glazed over fog one night with friends, I had a quick bbq and watched Americas funniest videos on a¬†Sunday¬†evening, and over two days I did sleep for a record of 13 hours combined. I cancelled plans with several people….I couldn’t have much¬†pleasure¬† well frankly because I’m in the fight of my life, and my sons. Let me ask you… if you were fighting for your child to be freed from a¬†debilitating¬†disorder or condition how much rest would you get? ¬†yep.. probably not much. No time for pedicures here. No time for wine, beer, happiness, or concerts.¬†While¬†my son was hospitalized on¬†the¬†psych ward I did¬†experience¬†the following luxuries:

I did not have a wet floor to step in in either of my bathrooms. I am used to pools of water anywhere that we have water in our home. 

I did not have to reach under my faucet to turn the water line on when I wanted a drink or needed water. I was free to get a drink WHENEVER MY HEART DESIRED! I could wash my hands at any given moment. I did not have to worry if P was around the corner waiting to lunge in the faucet and throw tantrums and hit me over our water wars. 

I could eat whenever and whatever i wanted at any moment. You know like those times called breakfast, lunch, and dinner. 

I was able to sit, or lay down on a couch that was not recently soiled with urine or juice, or ranch.

I was able to watch tv

Now those are luxuries I could get used to. I already miss them and its been one day. Oh how one day I dream of the sweet life again. 

¬† ¬†So bottom line with the hospital is this: he did not have many behaviors after the weekend. He was actually pretty good. He had a one on one everyday 24/7 until his sweet little body went off to sleep. He was able to play on the computer, watch movies, eat, have snacks, do puzzles, and have someone at any given time watch him bounce on a therapy ball and give the little prince whatever he wanted. Very little demands were in place and when they were….uh oh spaghettio……HERE’S JOHNNY… I mean Preston….¬†

¬†They tried redirecting, they tried calming, they tried “everything”, but ultimately they “had” to sedate him intravenously. Hmmmm a seriously controlled environment with doctors, aides, nurses, techs, educations specialists, psychiatrists, psychologists, suicidal teens, homicidal teens, and my non verbal autistic boy is sedated intravenously because you can’t handle him. Just give me the letter of recommendation already. They said he only has behaviors when he is told no. NO SHIT? ….well that’s¬†approximately¬†90% true. The other times…well that’s pure autism and its complexity. Bottom line ONCE again: he needs therepy from specialists who deal with autism. Thanks, can I just get my letter. This has cost thousands of dollars…wasted in my idiotic mediocre dumb parent opinion.¬†

So Saturday morning, P throws a cow. He hits me with his fists. he does everything he knows he shouldn’t. Its a nightmare. I call on a wonderful 18 year old girl who has helped me from time to time over the years with P. She is willing to be one of our new respite workers. She is with us now. She is swimming with P as I type. So far so good. I just knew I couldn’t make it through the day without help.¬†

Image

Thank Goodness for young courageous B! I love you girl!! ūüôā¬†

So here we are back to square one. P woke me up at 4:00 this morning but i medicated him and he quickly went back to sleep. I didn’t eat or get coffee until almost 1:00 today. After living the sweet life my body is like “oh yeah that’s right… we don’t do “the sweet life”.. lol¬†

My mom is gracious enough to watch P tonight and I cant wait. I am at ease for the most part when he is with her. I may actually go enjoy a beer or 12. Carry on carry on….:)¬†

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One comment on “The sweet life

  1. Elaine Cook says:

    I’m worn out just reading this. My prayer for Preston is that he will find the help he needs. My prayer for you is — ditto!

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