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: rejected  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”.

woman-tears1Yes 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.

_Dead_woman-cradling20-child-China

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.

saying      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

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14 comments on “Putting out fires for life

  1. Diane Tankersley says:

    My husband is pretty good t figuring things out and wiring with attorneys. He often wonders why when Chad was in the accident
    Didn’t they give Preston monies for life from ins companies. He should if been at for life. Just asking..
    Se you at your fu raiser, I pray for a full house.
    Your friends Greg and Diane Tankersley
    We wil look forward yo meeting you.
    We always think of you and preston with rosters

    • lisasain says:

      Hi Diane,
      I wonder the same thing. However, I did hire an attorney and they believed the accident was just that, an accident. I could have sued the mans ex wife but it wasn’t her fault. She lived in Hawaii and her ex husband never changed the title of the car over to her name. SO I could sue her but I just didnt feel right doing that. Preston was only 18 months old at the time. He was diagnosed like a week before we went to court. They said it wasnt the guys fault that P had autism or anyone else’s. It was very frustrating. Maybe my attorney sucked. I don’t know. water under the bridge i suppose. I did receive a good chunk of money but its been almost 12 years and its gone. Insurance is just now covering therapies for autism. Back in the day i paid out of pocket for everything.. speech, OT, medications, etc. The money is gone. 😦
      Thank you Diane and Greg.. I look forward to meeting you & thanks for coming to the benefit!
      Lisa

  2. Lucas says:

    One step forward, two steps back!! It amazes me how easy this could be without all the ridiculous red tape!!! So sorry to hear this news. We love you guys, try to enjoy your freedom, even if t is only for a couple days!

    • lisasain says:

      Freedom!!!! We want freedom! I suppose I must stick with my faith and really grasp at it during these setbacks and remember that it all happens for a reason. Thank you Lucas….now go eat a bug.. oh wait youre a veggie eater now….go crunch on a carrot… 😉 Love you and thank you for reading and caring!
      Lisa

  3. Judi Watson says:

    One day at a time, thats all we can do, so as not to get too overwhelmed. You are right, we do care, we do wish there was something we could do! Enjoy your 3 days, One day at a time.

  4. Kim Wombles says:

    Thinking of you and sending hugs and hope that you will prevail quickly.

    • lisasain says:

      Thank you Kim! The support and knowing people care has been the glue that has helped me to keep moving forward! Blessings to you and your family! 🙂

  5. Hang in there Lisa, I’ll be praying for you. I am an autism mom & I support you….I understand in a way that others don’t. Autism isn’t always cute & fuzzy & special, it’s painful, hard, heartbreaking & heartwrenching. The system effing sucks, it blows my mind that you can’t get the help you need. I wish I could do something to help, just know that people out there support your decisions. Enjoy your vacation!!

    • lisasain says:

      Hi Holly!
      Yes the system sometimes stinks, but with constant perseverance, I believe that those who truly need help will get it. It isn’t handed to us. I appreciate your support and as one autism mom to another, I thank you for your support. I pray that the not so cute and fuzzy moments in your life ultimately become moments of hitting great strides! Thanks for your support “autism warrior”! 🙂 Lisa

  6. Stand strong gunslinger. You’re in a hell of a spot.

  7. You are a warrior. A damn good one. I do understand that sometimes we want a day off from it. Enjoy your three. Praying for ya.

    • lisasain says:

      Thanks you yellow chips and ketchup. Are those oval yellow chips or triangles? 😉 I appreciate the support and knowing that others care! A damned good warrior? I have to admit… after all these years.. why yes, yes i am! Thank you! 🙂

  8. Gillian Brody says:

    Oh Lisa… I’m sorry. I am totally on your side. I would never turn my child over to the State. Keep fighting!!! As I know I speak for everyone on here… Let us know when and if there’s anything we can do!!

    Having CMH admit they pay Residential is a huge step. I hope that was written and you have proof! Just like with the elderly… Residential and medical are two desperate things. Most people don’t understand that. My grandmas nursing home is $3300/mth. Purely residential… No medical needed. (Alzheimer’s). Does he have Michigan Special Children’s? I think the trick is going to be coordinating the two together somehow!!!

    Last note…. Maybe? Just maybe?? It’s time to move to Midland?

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