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.¬†

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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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Settle Down, It’ll all be clear….okay Phillip Phillips…:) I will….

So official meeting #2 was yesterday… PHEW….3 hours long! I met two new “high ups” and they seemed to hear me loud and clear. They hear me, but they just keep saying, “we don’t cover residential services”. GRRRRR!!! I cried,I pleaded… I begged. It was sad. It was hard. My two advocates did not show in person nor were they able to be there via teleconference. Talk about annoying. So it was 6 state workers and myself. Lovely. The meeting came with many moments of silence. They know I’m right, its completely a financial thing. I’m going to continue with my crusade. ūüôā This song comes to mind and I dedicate it to the Stapleton family! Especially Kelly Stapleton (The Status Woe, here on word press) ..and all others in the “Hard to Love Club”…

Won’t Back Down… for the Hard to Love Club ūüôā

SO that was that. I leave the meeting and¬†I’m¬†so thirsty, I’m¬†emotionally¬†drained. Thank goodness i still have my water bottle from the meeting. I take a swig… mmmm….I could use a “stress nap” as I call it. When you get this stressed a good 10-20 minute nap helps to just “refresh your brain”. But, no. No time for that. I must go get P, because from what I’m told Thursday (today) is the day he is getting admitted into U of M. From what I hear from other parents that have been through similiar scenarios, ¬†its a month long stay. SO my intent is to have fun with Preston. Do whatever he wants and try my best to let him have fun and enjoy himself, spoil him, if you will. So he wants to go the indoor bounce house.¬†OK¬† Lets go,¬†I’m¬†sure it wont be busy. I call & there are only two small girls there. PERFECT! He does well pretty much the whole time. At one point the small girls do come into the bounce house he is in.¬†Immediately, I step inside the bounce house. I know he can be a danger to himself and others. He does really good. UNTIL they leave.. he doesn’t want them to .. but he can’t talk. He pulls her ponytail before I could stop him as she’s sliding out. I felt so bad. She didn’t cry¬†and¬†her¬†mom was right there. The mom was not happy but understanding. I¬†apologized¬†profusely. From this point on he keeps looking at the girls, pointing, grunting. I¬†know¬†he wants to play with them.. but he can’t. He’s overbearing, scary, and doesn’t know appropriate play. I¬†know¬†I know .. THEN TEACH HIM!!! Guess what… I HAVE TRIED!!!! I¬†NEED¬†HELP.. in order to teach him these things he needs ABA therapy 24/7. Intensive treatment.¬†That is¬†what the Autism center can provide.

SO anyways he is a little frustrated and I¬†know¬†that this can escalate so i try to get him to leave. ¬†I can tell he wants to but doesn’t. I can tell he’s going to flip on me and I’m on eggshells, my heart is racing, I’m praying to God, “please don’t let him meltdown or rage here… PLEASE GOD PLEASE!”!! I almost get him out the door when he notices a photo album. My heart dropped. I took a deep breath. I knew all hell was about to break loose. You see Preston is obsessed with photo albums, ANY kind. He enjoys looking at pictures. Especially those that have fun things in them.¬†This¬†one had party pictures that the place has done. It was a showcase per se, ¬†of their work on display. Preston wanted it and he wanted it bad. Already on the border of a fit, i knew this was going to be awful, I could feel it. Mind you.. I just finished a 3 hour stressful meeting. I didn’t sleep the whole night before. I’m not exactly sure he last time I slept the whole night this week. I take a deep breath and I say, “Preston we can’t take that with us, its not ours”. He grunts he grips the photo album and attempts to get into the car. I’m able to coax him back and I say, “do you want a sucker”? He says yes. I make him give the woman the photo albums and he gets the sucker. That’s when it takes the ugly turn.. he literally flips out screams, falls to the floor. They kind of giggle not knowing how horrible this can get. I tell them. They say ok no worries. Im thinking ummm you’re not listening. P decides to start kicking me and I can tell this is escalating and he is going to rage. He stands up adn I look at the girls and I said watch out. I feel they are pretty safe behind a large counter. I tell them to stay there and not come out. He begins to throw candy. then he knocks over a table then it happened.. he starts hitting me. I back up and he thrusts forward. He got me in the face and has a hold of my hair. I manage to break free and step far away as he starts destroying the property. I dial 911, the operator can barely hear me through his fits of rage. The screams were so loud. As I’m on the phone he broke a ping pong table in half, took a framed picture off the wall and attempts to throw the glass part at me. He manages to break one piece of glass but doesn’t harm anyone. As I’m dodging glass, and candy… I’m trying to remember where the hell I am. They need the address. The girls scramble to get it for me. I tell them to clear the counter because he is going to use anything he can to throw at us. The operator asks if we need an ambulance, Yes. We do. In the¬†back¬†of my head I’m thinking here ¬†we go. I was told that if we ¬†were int his situation that I need to tell the ambulance driver that he is registered to be admitted to U of M. So i’m thinking we are going there. I hang up with her. I’m dealing with a monster.¬†This¬†is¬†not my boy.¬†This¬†is autism. Fricking stupid, insane, ludicrous, unfair and nasty autism is staring me right in the face and challenging me. Nope. You will not win, I attempt again to stop Preston from his rage and destruction.. bad move. He slaps me dead smack on my face. It stings. I hear the¬†girls¬†working sigh in astonishment. Preston literally picks up the popcorn machine and throws it behind the counter. My tears flow snot is dripping uncontrollably from my nose. I wipe it on my clothes. Where is the damn ambulance? Where are the cops. “Fine… I give in autism you nasty bastard”!!! I’m defeated. I’m scared. Finally the cop comes in. He is calm as can be. He says this guy? I say yes. He gets close to him and I say DONT! Hes aggressive he will hit you! Too late. Hes asking me questions and i’m like… control him …P’s destruction starts the officer tries to stop him. P gets aggressive with him¬†and¬†the officer has no choice but to put him to the ground. His knee in P’s chest and gripping his arms with all he has. P is flailing about. The officer has him in lockdown. Once things calmed and P stops moving. He asks me is he ALWAYS liek this.. I just nod. The tears wont stop. Can you imagine seeing your child pinned down by a police officer? My baby. He’s 12. But really according to his educational records he is only about 4 years old. Damn it. This sucks. I tell the officer if he releases him, now that he’s calm he will just lay there that he is afraid. P wasn’t just afraid he was scared to death. I think he had a seizure. He’s looking at me with these eyes. The help me please mama eyes. The officer states he cant because he is afraid he will hit him. I just not in compliance. I can’t argue. He’s doing his job. The ambulance gets there. The officer is like, get a gurney, restraints, and blah blah blah.. this kid is a danger, hes aggressive, strong, and blah blah¬†blah.. i just kind of blank out. A familiar face walks in as i am in trauma block out mode. Its a fellow “autism warrior” …He is a police officer in the area that knows me. He hugs me and I break down. He simply says,” you”re doing the right thing.” Its exactly what I needed. A hug. I haven’t been hugged in so long except for my mom the other day. ¬†I just needed that…. those 5 words, I needed at that exact moment. I take a deep breath, wipe my tears and got my crap together. The paramedics have him¬†restrained. I tell them he needs transport to U of M, the driver says rudely and quickly, ” I’m not transporting to U of M.” I ask why and he says I’m¬†not¬†going¬†to fight him the whole way. I state, ¬†“one he is calm now and two he is restrained”. ¬†” i’m not doing it lady” he says. Whatever.. I’m too tired and I’m too angry and frustrated. The police are there.. I feel defeated. He is on his way to Hurley. I stay talk to the police for a moment and leave.

So now we are at the hospital. Im not even going into that or that i had to tell a couple of people off. idiots. You ARE NOT TRAINED IN AUTISM! LISTEN TO ME! YOU ARE NOT TRAINED IN AUTISM!!! YOU do your job, Ill do mine! But we need to communicate effectively.. in order to help the situation. UGH! UGH!!!! talk about frustrating. P is agitated at one point and Im lke the sucker! I have the sucker from the bounce house! YAY YAY!!! Success… he is happy and we found cartoons on Nick Jr…Phew.. deep breath…

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We get home around 6 or 7 I can’t remember. But What i do remember is finding out that his stay in Ann Arbor is only approved for 2 days. GULP! WHAT?!?! I have heard from other parents its a month stay. No. Approval for 2 days then they go from there… I’ll be “lucky” to get 6 days total. On one hand I’m happy…¬†that is¬†SO easy! I can handle 2-3 days… CAKE! But wait.. isn’t he there to be observed, to be monitored? So that he can get evaluated and we can help him? Umm great. perfect Flipping perfect. So ……He is supposed to be admitted today. Who knows what will happen but while he is in the hospital now, I get to fight for treatment too. I can’t wait. Relax? Get rest? recoup? Nope. Not this mama. I’m in a war… you don’t rest in war. You sleep with your eyes open and get ready for your next move. Carry on.

This song is dedicated to my son:

https://www.youtube.com/watch?v=OTg1n95–KE

I Love you Preston Lee.. today now and always.. I will NEVER give up on you… ever, even if it kills me.

Break time…

“We will not cover residential services that can help your child live a safe, nurturing, and humane life. However, we will hospitalize him to give you and him a much needed “break”. During this time we will induce more trauma, provide emotional distress to you both and after we reach the maximum time that insurance will cover for psychiatric inpatient services we will send him back home and wish you the best of luck”. Sincerely the State of Michigan.

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I literally just went to the bathroom and threw up.

I sit hear with tears streaming down my face.

I’m trying to be positive about this.

How positive could you be to see this with your child who doesn’t understand?¬†

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It’s hard to remain positive and optimistic. But I’m trying. I’m filled with anxiety over Preston going to the hospital. ¬†Forgive me if i seem dramatic, but it feels like when I had to put my cat down. I couldn’t look at my cat knowing that he was going to be out of my life forever.. I¬†know¬†Preston isn’t dying, I¬†know¬†he’s going away temporarily. I know he isn’t dying. Although in all honesty sometimes I think that would be easier. I’ve dealt with death. A quick and sudden loss was easier than this slow torture. The constant ache. It takes its toll. I mean seriously am I admitting it would be easier if my child died? yep. I am. Parents of children with special needs sometimes feel this way. It’s how desperate we are. It’s how hard it is. I can’t look my son in the eyes without crying. Ill be going to the hospital alone. I can’t have my mom going and crying too. It will be hard enough for me to keep it together. Shit.. tomorrow is tax day. I haven’t done those yet. ugh…..”Ain’t nobody got time for that”

I’m angry, I’m sad, I’m desperate, I’m mostly scared that I’m F’ing up my son psychologically and emotionally and that kills me emotionally.¬†Image

I can’t listen to music. I can barely be around other people. My friends kids tear me apart. I yearn for my son to be normal so bad it kills me. It kills me that i will never experience “real” motherhood. I’ll never be a grandma. I’ll never¬†hear¬†“I love you mom”. I swear i feel like a crazy person. Where in the hell did my life go???!!!!! Excuse me while i go throw up again. Enjoy your Sunday.¬†

NO NO NO!!!!

Lets talk about Easter.. How was yours? Well here is how mine went:

On Easter Sunday he ran out of my mom’s house and almost got hit by a car. He was upset and I didn’t know why. (of course we all know that behaviors are a way of communication). My mom lost her patience with him and wanted to hit him. He was kicking, hitting, and scratching us. He did not have a coat or shoes on. We were simply trying to get those on him and trying to redirect him by coaxing him into a walk around the neighborhood or something fun inside the house. It was NOT working and he continued to abuse us both. I left her house with Preston in my car, he calmed down on the drive home.

When we got home and pulled in the driveway he refused to get out of my car. I didn’t care so I sat there but then he started destroying my vehicle. He ruined the backseat of the passenger side by pulling a panel off of the seat. He started kicking the roof. Image I decided he could not stay in the car. I tried to redirect him with a bike ride or swinging in the back yard. This agitated him even more and he jumped out of the car and attacked me. He was hitting me so hard that I couldn’t defend myself, so I ran from him but he chased me. I was scared and shaking and trying to think of what I could do. He was so out of control thrashing about hitting the car and me. I knew he needed to be sedated. But his medications were in my house. I wanted to call the police for help but my cell phone was in the car. I had to get him to stop going after me before I could get my phone from the rear window where he threw it or get his medications inside! I pushed Preston to the ground and ran like a mad woman inside the house for the medication. When I went inside, he was on the ground punching the ground. When I came back out he was attempting to get naked. I struggled to get him to take his medications because when I went near him he was scratching, pinching, hitting, and pulling my hair. He even hit himself in the head a couple of times. I managed to get the sedative in him. Within minutes he calmed down and went into the house. I also gave him a little Benadryl. Within 10 minutes he lay down on the couch and watched a movie and he was calm for the night.

Yesterday he came from behind me and hit me on both my ears. I don‚Äôt know why. It‚Äôs the next day and I am still in pain. I didn‚Äôt sleep well, I am hearing ringing and sounds are muffled. I called my doctor to go in and see her. Their response was to send me to the ER because it was an ‚Äúassault‚ÄĚ. I had to beg them to let me come there, because 1- I don‚Äôt want that on his record, nor do I want to go through the ER for questioning by police. 2- I would have to take Preston with me‚ĶIt‚Äôs the last thing I want to do today. They agree to let me come to the office.

That was Easter.

On Friday April 5th, I dropped Preston off to Camp Fowler a recreational camp for children with special needs for a weekend respite program. When I dropped him off I believe he had a seizure in the bed and wet himself. He was with two very big male staff that he had never met and I got him into the shower. He was shaking from a possible combination of being cold, the after effects of the possible seizure, and or he was afraid. The staff assured me he would be okay and my mom and I left. He ran out of the cabin and down to my car that was unlocked. He refused to get out and was crying and extremely agitated and upset. I was torn on whether to leave him at camp or take him home. He attacked me several times and at one point even tried to use a icescraper to hit me. My mother tried to videotape the episode, eventually we left him there and the center said he had a rough night but did okay over the weekend.
On Sunday night when he came home he was extremely hyper and seemed anxious, I was able to redirect him throughout the evening and he went to sleep once medicated with his night meds. However he woke up around 2:30 am and he came into my room full of rage and I woke up to him punching me like a punching bag over and over. I was literally attacked. I was able to “get away” and he ran into the kitchen and he ripped the door off of the refrigerator.Image It was scary and he was full of rage. He kept opening the front door and wanted to go “somewhere” , I believe he wanted cheesy bread, his latest food choice. After a very hard few hours he fell asleep because I gave him benadryl and melatonin. We overslept for school and the bus driver was concerned and called my mother because my front door was open, the garage door was open, and my car doors were open. I’m not exactly sure when this happened, but I must have been asleep and he woke up sometime between around 5:00 and 7:30 naked and went outside without me knowing.
I received a call from our clinical therapist and we are trying to place him at U of M Ann Arbor Child Psych unit. He is out of control with his rage towards me. I also called his previous psychiatrist, in Ann Arbor to get advice from him and he felt although this was probably a good idea it is a temporary “band aid” and he really needs intensive treatment. Of course I know this and my goal is to send him to Great lakes in Portage.
Prior to seeing The Pschiatrist at CMH/GHS, Another U of M was Preston’s Doctor for years. He is a prestigious Doctor in this state for working with children with autism.
He felt that Preston’s behaviors were beyond his capability of helping anymore and said that the CMH Psych was much more informative on dispensing medications. He suggested that we start seeing her instead.
Currently Preston is on the following regime for medications:
Morning: 12.5 ml of valproic acid with 7.5 ml of benadryl
Afternoon: .25mls of Haldol dispensed at school
After school (3:00) .25 mls of haldol
Evening (5:30) 12.5 mls of Valproic acid with 7.5 mls of Benadryl
Bedtime: (8-9:00) 1 ml of Haldol
I received a denial of services for residential treatment for Preston from CMh/GHS and I am mailing the request for hearing today.
Anyways I hope everyone enjoyed their spring break. Its Thursday and i am just able to blog. I couldn’t before because I was too emotional, tired, sore, suffering from PTSD.
NOW FOR SOME GOOD NEWS!!!! ūüôā
I have awesome friends family and fellow bloggers and viewers.. How can you help?
Well if you would like to donate I have some pretty amazing people that have set up some fundraisers here is the link to both:
If you are unable to donate could you take the time to write a letter to Dr. Phil? Feel free to add my blog… feel free to write to whoever you want. Could you share my blog? The fundraising sites? That just takes a moment and that’s helping! ūüôā Thank you!
From what I’m told P will be hospitalized Probably no later than Wednesday of next week. This is a band aid for the situation, but apparently a good move. A good move… as if my son’s emotions, feelings, and life are a chess game. It’s tragic. I’m scared for my child. He doesn’t understand why he is there, he doesn’t understand why I’ll be leaving him. They don’t know that when he says as hard as he can “pp pp” it means he needs to poop or he wants popcorn. As I’m typing tears are streaming down my face. I know we are in danger. I know he has hurt me and will continue to hurt me. I KNOW this is whats second best for him at this time. Everyone can say it until the day I die… but the truth is it doesn’t make it any easier NOW…..I hurt now, he hurts now.. and this is going to hurt really really really bad. I’m alone. As much as my friends/family want to and do support me… I’m alone. It simply sucks. I’m tired of hearing no, he cant get treatment, no he doesn’t qualify for that, no that is not a service that is under the autism legislation, no.. no no NO NO NO NO NO NO NO NO NO NO!!!!!! I wonder if things would be different if those who say no had a child with severe autism that beat them and destroyed things, I wonder if things would change if they couldn’t go on vacation, go to dinner, the grocery store, eat, drink, use the bathroom, drive down any road they wanted. I wonder…. I just simply wonder.
I know that MY child is not the states responsibility or my family’s or my friends, or CMH’s… I KNOW that! However, we give help to those who suffer from alcoholism, drug addiction, and even killers don’t spend their lives in prison. Not to mention if they do they get the medical treatment that they need. I don’t live off of the state. My son gets medicaid. That’s it. No food stamps, free rent, or cash. I don’t have medicaid, just P. I am a full time student trying my best to make a better life for my family of 2. Not just our lives, but in the future of others lives too. I will dedicate my life to the special needs community. Can I get a flipping break and get a yes??!!!!!????
Thanks for reading, thanks for caring.

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