Trust no one, suspect everyone

Well supporters of the insain asylum, I do believe they are getting the recipient rights complaints. Or maybe they heard my message loud and clear the other day. Let me start this post by stating VERY CLEARLY that I am completely unclear of our situation. I am confused and frustrated with what is going on and I am not sure if I should even be blogging anymore.

However, I can’t stop. It’s my only outlet. Not only that but have you ever started something and feel compelled to finish. To me this is a story that I’ve sucked everyone into and I wont stop until I can write the end, good or not. Its life. Its our life. Its truth. Its all I have.

So Yesterday we go for our normal med review, it goes well. The one thing I can say right now is that his new medication is working. For now… I am pretty pleased with that. However, our “normal” is not good. Even on a good day, we struggle. I am tired. I’m at the end of my rope. I can not keep up on anything in our life. Laundry, cleaning, etc. It’s a nonstop affair. I know I know… it is for everyone. But you don’t understand. I mean I am CONSTANTLY washing bedding and soiled clothes. Rarely have all of the chores been done. I don’t have the extra help to mow the yard. Make dinner lunch etc. Its tough and I am quite frankly, sick of it. Emotionally and physically beat down. I have expressed this many times but this last time when I called out of desperation I expressed that sometimes I wished we were dead. Yet sometimes I’m scared because I’m afraid P may kill me or me him. Its that bad.

I suppose “they” listened this time. Maybe its the recipient rights complaints. Either way… I was told that CPS is probably going to be called by someone at the state level. At first i was shocked and laughed. Then I got angry, then I really panicked.

After sitting here all night thinking of the scenario i realized that I don’t care. (yet, of course I do) It will go one way or the other. On one hand this could work out to our benefit, if Preston is taken out of my care even temporary guardianship is gone. Then medicaid pays for treatment. Yay.. winning right? Maybe. But not really. The other side of this is the trauma induced when he gets put into temporary foster care. He wont do well. Whoever has him wont keep him long. I am not guaranteed where he will end up or if he will even get treatment.

****sigh**** maybe this was a sort of threat. Maybe its part of the “game”. Maybe its that serious and I am naive to it all.

I’m not sure. But I am sure of one thing. I don’t trust anyone anymore. I may get media involved. Its time. Now if I can find the time. Ill keep you all posted. Who knows what today will bring. We may get some company.

Carry on carry on.

Short and bittersweet

So today I called “j” and had to leave a message. I received and email from “pb” that stated both they and j had spoke with Our county’s Cmh. They said they brought up numerous questions and concerns regarding Preston’s treatment.
My reply to the email was that I wanted to know exactly what was talked about.
Later in the day I called “j” and spoke to them directly. I was told that Great Lakes is covered by Medicaid. Period. Hopefully I would know by the end of the day.
It’s 7:43, & I never heard back. I’ll call in the morning, again. The emails & conversations were not very polite in my end. I did apologies for my snide remarks explaining how tired and emotionally drained I am. I’m literally hanging by a thread. The mini vacation I had was great, but coming back to hell is no fun.
PB did ask about our schedule & wants to meet Preston. My respite workers are getting their raise finally and I have yet another two more people ready to try working for us. ***sigh*** the joy of strangers in your home. It sucks & then I have to train them. It’s this stupid vicious cycle. A newspaper did an article on the fundraiser coming up. It will be in a few local community papers. Thanks grandpa and A.b.!!! 🙂 here is the link for the fundraiser: http://www.youcaring.com/medical-fundraiser/help-lisa-preston-put-their-life-together-piece-by-piece-/47136#fundraiserShare

Here is the fundraiser event:
https://www.facebook.com/events/126287724228376/
Feel free to join, share, or donate whatever you can to help Preston’s future!

I just wanted to update everyone and a huge thanks for signing and mailing the recipient rights complaints. Big thanks to K.S. for getting that ball rolling. Not sure what I’m talking about? Go to K.S.’s blog and “campaign”, mail a letter, save a family 🙂 just click here –>http://thestatuswoe.wordpress.com/2013/07/05/mail-a-letter-save-a-family-get-some-karma-for-yourself-here/

That’s it for tonight my sweet village..:) Ty for the help. Thanks for caring. Thanks for sharing. Thanks for believing in us & giving me crutches because I’m completely broken at this point.
Lisa

GOOD MORNING VIETNAM.. I mean State of Michigan… ;)

I was too tired to write yesterday, but after writing my last blog I felt inspired to get back on the horse. I made several phone calls and I had the attitude that I was “kicking ass and taking numbers”. I called and spoke with three different people, I will keep their real names private. They were CMH/GHS, PB, & J.

When I spoke with CMH/ GHS, I was enraged and I asked them once again why residential wasn’t covered. She said well we will cover the clinical part not he residential part. (Yesterday I wrote the opposite). I also explained that another worker quit. I also brought up another issue that is REALLY bugging me, two months ago I was promised that my workers would get “substantial raises. That has yet to happen. They are being ridiculous about this and I was pissed!!! How can I keep staff at $8.00 p/hr when P is not like other kids they are used to working for?!?! Also where is my request that I put in a month ago for a breakdown on how many medicaid dollars are being billed per month on P? Within two hours I had the raise implemented with 23 days of back pay and I received the medicaid breakdown of monies spent. 🙂 ………winning……….

SO then I’m inspired to talk to PB. He is a worker for the State of Mi. He is on vacation but still talks to me. He explains that policies have been changed because of me or better wording enforced throughout the state of Mi at every CMH/GHS. I say that’s great and how is that helping P and I? He says .. “yes, I know immediately it’s not”. I explain that I have changed my mind on Great Lakes Center For Autism(Great Lakes) and that I have decided on St Louis due to P’s severity and my chronic worry about the after care once he would come home for treatment. PB agrees with me but with a little hesitation. I asked why he was hesitant and he said I really would like to see P. I laughed and said, “we’re available now” we both laughed and then he said we will schedule a meeting on Monday. He will be coming to my house to meet P so he can see for himself the way that we live and the way we are in prison. He will see the holes in the walls, the stained carpet, the mold crawling up the bathroom walls, the hole in the floor that is straight to the basement, the food stained walls and ceilings from P throwing food. He will immediately notice the swing smack dab in the middle of the living room and therapy balls and motivational “signs” written on paper that I tape to the walls for inspiration. There are no decorations and no nice pics on the walls. I’m really excited. Except for one thing. This guy works for the state… I hope he doesn’t turn me into Child protective services. 😦

The next person is J. She also works for the state. She deals with medicaid. I call her and ask if she recalls my case even though we have never talked, I have sent her e-mails before. She says she does know who I am. I explain how we want St Louis versus Great Lakes and in a nutshell she doesn’t agree with my decision. As a matter of fact she says St Louis will not be able to handle P and that he would be back home within a month. She also says something VERY disturbing, she says ” I know you don’t really want to warehouse him, right?”   W     H    A    T  ????!!!!???? Are you kidding me? What is wrong with these people and based upon their statements its very clear that they just don’t understand the position that parents can be put in. Her response and question was ludicrous.

Although she really hurt me and I was crying.. no, I was sobbing hard and couldn’t catch my breath, she was great to talk to. In a nutshell, she is calling CMH on Monday morning and seeing why they wont accept P. I flat out asked her, “IS THIS A COVERED BENEFIT”? She says, “Yes”. I said then why is this so flipping hard to get them to cover services? She said I don’t know but I will help you. However, I would like to push for Great Lakes, I feel like your son can thrive and be back home with you.

*******************sigh*************CRY********************sigh*********************CRY*****************************

I’m as confused as ever.

Do i fight for a permanent home for him and struggle with “warehousing him”?

Do i fight for Great Lakes where he receives intensive ABA treatment then worry about him coming home and not being able to provide a stable consistent institutional/educational type  home here?

ABA is no joke. It must be implemented in the SAME way at all times of the day 24/7. No breaks. I mean you get creative and find ways to use it and before you know it, it’s second nature, However, it MUST be used by everyone in order for it to be effective. The schools, his therapists, me, Shamma, Uncle, etc. UGH….How will I find therapists. I’ve done ABA before and i was paying $35-$100 an hour…EVERY therapist lived in the Detroit area. NOT ONE IN GENESEE COUNTY!

I’m happy that my crazy, moment of desperation, begging, pleading, sobbing, attitude of kicking ass and taking names worked. I said some VERY inappropriate things that were rude. Then I would swoop in with kindness and tell them some sad stuff. I don’t care, it worked.

I’m getting a home visit from a “high up person” that works for the State of Michigan and another person who is high up the ladder that is the medicaid “guru”, she has promised to help us. I feel like I’m winning….. again. Yet feel just as lost as ever.

I am going to take this weekend to spend with friends and forget about my war for a couple of days. My friends are so awesome. They let me cry, they are brutally honest, they try and understand, sometimes they get me drunk. lol Regardless they are great. All of them. I just love the crap out of you all.  So is my family. Especially my mom aka “shamma”. I swear I would be dead if it weren’t for her. She is the most amazing woman. She is getting a 2 day break from P. 🙂 I couldn’t be happier. I understand why people love Christmas so much, because if it feels this good.. I would want it every year too…lol My grandparents worry so much so does everyone else.

I just want you all to know.. that as hard as this stuff is. I will continue to fall and have a roller coaster of emotions, but I’ll figure it out. That’s what a mom does for her child. Today, I’m ok. I will continue to be “ok”. Just remember I’m at war but I’m going to win. In the meantime try not to worry too much and just keep praying and cheering for us. I love you all !!

Thanks for caring 🙂 Thanks for reading this boring stuff….sincerely,

Lisa, Mom to Preston a happy non verbal boy that is trapped by autism

Preston….all of this because of you, because I love you. 🙂

Putting out fires for life

The day started “normally”, awake at 6:00 am started washing the bedding in both beds. He urinates in them nightly. I end up on the couch or recliner most nights. The good news is I slept all night.. so did he. At some point I talk to Preston’s paternal grandparents who decided they would take them for two nights this week and my mom takes him on Saturday so I was elated… A THREE DAY VACATION!!!! Should I go to Florida? Get a hotel room? Make some bad choices and regret them later? It’s a holiday weekend… wow… what’s a girl to do… I was thrilled beyond words. I was actually motivated to do some laundry and go for a walk. I was on a high that no drug could ever give. However, my high was quickly diminished. As a girlfriend told me today, “its hard to enjoy anything in our lives because of the PTSD, we are always putting out fires and have no recovery time from it”. Its true. It’s painstakingly true.

I had almost two hours of my high when I received the much anticipated phone call from the boys home that I am trying to get Preston into. The home, for those that don’t know is called St Louis Center in Chelsea Michigan. http://stlouiscenter.org/history.html

Last week Preston had his intake appointment that would determine if they accepted him or not. I was told we could do a two month “trial period” so they could see if he was a candidate or not. During this time I would pay out of pocket $2000 a month for his stay. If they decided that he was a good candidate for permanent residency placement, I would be able to continue to pay cash for his stay there for the rest of his life. I was getting plans in place in my head. Finish school, work in a bar on weekends, sell my house, live in a shack, eat rice for life, etc. I didn’t care. I thought during the 2 month trial I would use funds from his grandparents or funds from the upcoming fundraiser in order to attack my plan if he were able to stay. I dealt with a plethora of emotions. The biggest of the two dreams being my son living in a place without me and thriving or not, and the *freedom ( *you know like drinking and eating when I want and showering in a clean shower then stepping onto a fluffy rug for my feet) I would possibly have and finally ending this war that has been going on for as long as I  can recall. I was doing my best to emotionally prepare for this unknown journey.

Then it happened:   I was told several things. 1- The center will require Preston to have a one on one direct care worker probably for life. A minimum of 12 hours per day at a rate of $12.00 per hour for the staff person. ( this is in addition to the $2000 a month.)  I’m not the best in math but that’s a minimum of $6320.00 a month. I obviously can’t afford that.  They also told me that they will not accept private pay due to his needs,so they expect CMH or medicaid to pay for placement. Lastly they told me that they may POSSIBLY accept Preston on an occasional weekend if I need time to prepare for court or anything related to fighting for him to get funded. “However” he states, “only for two days and probably only once”. “oh and if you do get this covered, he cannot start until September when school goes back in session”.

Yes I cried and I cried hard. My sadness turned to anger and my anger turned into rage. Eventually my rage turned into numbness, the numbness turned to a feeling of doom. Then I looked at Preston as he wanted me to play “bug” as I am driving down the expressway. Unaware of my emotions, unaware of what I  am trying to do. Unaware of my gut wrenching feelings that feel as if i will fight these fucking fires forever. My emotions, once again, turn into that of a warrior still at battle.

Here is the bottom line, they want medicaid to pay because they will get more money. It’s ludacris. I am willing to minimize my life and live with bare necessities to pay the $2000 a month and they still want more. It’s a business, I have to remember this. A business that has the taxpayers paying for my sons life, when I am willing to do so myself. Nope.. not gonna happen.

Here is another tidbit I have mentioned in the past. If I were to give up parental rights by abandoning Preston, I would be charged with a felony, probably never be able to work with children again and fight to have the charges expunged. However in doing so Preston becomes a client of DHS and medicaid pays (from what i have researched I could be very wrong,  but up to $200,00 a year per child. However he would get services… hopefully, eventually. You see, its not so cut and dry.) If this happened, I have no say in his life, I do not get to see him, I will have duct tape on my mouth and my hands will be tied in regards to any say or treatment that Preston receives. I am NOT guaranteed he will end up in a nice place. Think one flew over the cuckoos nest. It happens people.

So here I am. Back to square one. My hearing date is coming up for the appeal in requesting residential treatment. Its not looking good. The ONE thing I have learned is that there are two parts to a child caring facility. There are two charges.

1- is the residential part.. food clothing shelter, care, etc.

2- is the medical or clinical aspect. This includes doctors, therapy treatment etc.

I am trying to get st louis to let me know how much both parts are because CMH has admitted that they DO COVER RESIDENTIAL for children with developmental delays, but not the clinical or medical part.

I know this may be confusing and i’m sorry. I know its boring and a hard to read post. But this is what is going on. Do not ask me questions that can be answered in this post. I’m blogging for a reason. I’m stressed beyond words.. I’m at war and I’m fighting fires getting my ass kicked everyday. I’m VERY sorry but the last thing I want to do is retell the story over and over. I’m constantly getting prepared for the next move. My next act of defense. I hope you understand.

Lastly let me say this. I have had several people verbalize that it may be time to throw in the towel and give up rights. PLEASE imagine taking your baby or your 13 year old.. okay just imagine your child. Sew their mouth shut, give them drugs, and handcuff them and drop them off in Beirut. How could you willingly do so? I am not guaranteed safety for him. I am not guaranteed treatment or love. I may eat my words here but Im not done fighting and if we are going down. I’ll die protecting him.

I’m not done fighting. I will not let my son become a ward of the state. I’m going to win, one way or another.

I’m going to win and I am going to tell my story, our story. I have heard others speaking of similar scenarios. I was put here for a reason…I will always be an advocate for my sweet boy trapped in the world of autism and for the other children who cannot convey what they want to say.

      ALWAYS.

I will try and keep you all posted and let you know what is going on. The hearing is in August I think. I’m sure between now and then I’ll have more fire stories to share. Thanks for reading and most of all, SERIOUSLY thank you for caring. The responses keep me going. I know you hear me. I know you wish you could help. I know you love us. I am extremely blessed to have such wonderful friends acquaintances and strangers in our lives. I couldn’t fight this war without my support brigade. God bless you all. I’m going to put these thoughts away for a few days…I have three days of freedom to enjoy… 😉

love,

Lisa, Mother to Preston a nonverbal happy boy trapped by autism