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