A pretty important meeting is happening tomorrow. Mr. “X” is meeting with the “top peeps” at GHS, they are going to battle it out over medicaid codes and whether or not they are covered services. Please pray for us. In many ways I’m sure the GHS “peeps” will continue to say it is not a covered service but its a little bit of hope and its all I have left in me. Literally, I’m fading, I’m withering, my health is suffering, my mind is going numb into that whole post traumatic stress disorder “place”, and I am dying a slow death. I am no longer myself. I have moments that I do my best to pretend I am me, but I’m not. Inside I want to scream, cry, lash out on everyone. I’m not the Lisa i used to know. I don’t know if I’ll ever be her again. My life is a daily battle of survival. Right now i’m sick. I have a bad allergy sinus thing going on.. or I keep telling myself that. I hope its not bronchitis or something serious. I went back to sleep today when P went to school and had a terrible reoccurring nightmare about my late husband. The dream changes here and there but mostly its the same, he fakes his death because he doesn’t want to deal with Preston or he cant deal with him. He has the perfect family as I struggle to deal with our son and the nastiness of autism. I despise the dream, almost as much as I despise autism. I wake up feeling alone, angry, hurt, and sad that I feel betrayed by my dead husband, even worse I feel like I’m truly insane.
I struggled on Sunday the inevitable Mothers day. No good morning hug from my blue eyed baby. No card, no breakfast in bed, no flowers, ….Just another day as the world celebrates moms…I say a prayer and I thank God for mine. But this year I couldn’t even verbally thank my mom. I didn’t have it in me to even get her a card. I promised her a day together in August IF Preston gets approved for a camp that he hates. I promised a day trip (in 3 months) to the casino where we could enjoy a dinner and a car ride and a hotel room that was peaceful. It’s a day that we both deserve and i’m not even sure i can make it happen. I’m a tad bit resentful and angry these days. I’m trying not to be, I really am. I’m asking God for my strength and to not lose hope. But its hard to see the light when you’re in prison. That’s what our life has become, I’m a prisoner in my own home. So is Preston. It sucks. What sucks even more is that this summer I have 4 events I’m hoping to do IF P gets to go to the camp he hates,
1- the fundraiser that is for Preston here is the link: http://www.youcaring.com/medical-fundraiser/help-lisa-preston-put-their-life-together-piece-by-piece-/47136
2- a John Mayer concert with no date.. but hey 3rd wheel is better than a night in prison right? 😉
3- a night with my mom to the casino
4-Jimmy Buffet I have a date from Scotland 😉
After typing this I slightly feel better and blessed, I mean some people probably don’t get to do that…so I should quit being all woe is me.
Back to my original point, please excuse the sidetracked thoughts and pity party. lol My point is PLEASE pray, please pray that we get the answers we need tomorrow. Not just for me but for other families in this county. Preston and i are not the only prisoners.
Here is the “recap letter i sent to Mr. “X” for the meeting of the minds tomorrow:
Hi Mr. “X”,
On Friday may 10th Preston was supposed to go to the Fowler center for weekend respite camp. My mom & brother took him because there were problems with me taking him last time, we thought this would resolve the issues. Upon arrival he screamed, cried, & refused to get out of the car. He did not want to go so my mom brought him back home.
On Saturday afternoon my mom who is also my respite/cls worker took him for the night. He did okay. Not without aggitation, aggression, & destructive behaviors. however my mom knew i desperately needed the break to sleep. I picked him up Sunday morning & when we got home he broke the mouse to the pc. We left to get another one at radio shack. He wanted to go to Salvation Army but it was closed, It is in the same plaza as radio shack. I told him it was closed but he did not get that concept. Knowing it was closed I let him walk down there himself to see the doors were locked. As he was pounding on the windows I watched from a distance as a car pulled up to drop off donations to an after hours box. I turned around and started walking towards radio shack thinking he would follow me. When I turned back around he was gone. It really made me nervous because I knew the store was closed. I thought he was taken by the car I noticed. I immediately ran down to the store when I noticed lights were on and the doors were open. As it turned out workers are there but the store is closed to the public. They thought he was in danger & opened the doors for him & called the police. When I got inside I explained he was non verbal & has autism. I asked them to tell police to still come knowing this could get ugly. I was able to coax Preston out of the store with three video tapes. He had taken his coat and shoes off and was close to stripping naked. When the police officer arrived he knew who we were. He asked me again if I managed his care alone, I explained I did through tears. He made sure Preston got buckled safely and into the car then we went home. I was afraid of the car ride home. I managed to only get a bloody lip from him. I sedated him as soon as we got home because he was being unruly.
Today is Monday as i picked him up from school for his doctors appointment i could hear him screaming. He was on the floor crying & had three staff around him trying to control him. (Last thursday the cpi team was called in his classroom due to his outburst, it took an hour and 4 staff members to control him) At the doctors appointment, in my eyes he was “good”, the doctor asked me if I had considered putting him into a home. I just cried and didn’t have much to say to him. Preston was all over the room jumping, hitting the bed, the counter, splashing in water, not being still for one second.
When we got home he broke our recliner, stripped several times while standing at the front door, and had aggressive behaviors towards me on and off.
It is now 5:30 and I am waiting to give him his night meds so I can get him to sleep, praying he sleeps all night. We are sitting in a parking lot so I can type this to you. (He enjoys car rides). This is a typical few days.
What a great Mothers Day as usual. Preston needs intensive treatment that the center can provide! It’s not permanent residency, but it’s a permanent solution! His condition is something that professionals without experience in autism cannot handle, the center can help change his behaviors and teach me and staff how to keep him under control! Thanks, Lisa S.
So there it is.. a typical recap of a few days for us. Please pray. My son needs intensive therapy. I’m not sure how much longer we have….We are slowly dying. Thank you.. 🙂
Peace, love, health, wealth, and happiness to you all….Share my blog, share the fundraiser, … share because you care…Eventually something has to give if I keep screaming.. right?