So Yesterday I saw my therapist. I have been doing pretty good lately, Preston is as stable as he gets. Although, I also had to take him for his medication review and turns out he is gaining weight at a very rapid rate. Big surprise. She was concerned with this and decided to switch up his meds a little bit hoping to see a decrease in his manic eating. Poor kid, and poor me.. his “manic compulsive eating is costing $200 a month. Ugh. We don’t qualify from any help from the state like food stamps and or whatever other benefits are available out there. Never really have. I’m lucky he gets medicaid but at any point it may be taken away and it has before. Its scary. So back to my appointment, I felt great. I recently had two days to myself and have received some respite during the week..Life is “grand”. Which makes me feel like crap.
I feel guilt.. I am confused.
“Why”, she asks.. and the tears start flowing…my lips swell up and I feel the heat start in my face and chest. Ugh here we go.. “tell her Lisa, don’t hold back be honest”, I tell myself. I feel guilty because he’s doing ok right now. I feel guilty that I’m trying to place my 12 year old in a home outside of our home with care around the clock. She reminds me that 1- my feelings are perfectly natural in an unnatural situation. 2- she reminds me that just because we are good right now doesn’t mean it will be that way in a week or month or two months down the road. She asks if I’m still sleeping on the floor, “Yes”. “is he still having meltdowns and being destructive”? “Yes”. “is he still hitting you”? “Yes”. “Can you do ANYTHING that isn’t planned”? “No”. “Is he still flooding the bathroom”? “Yes”. I’m living in a co-dependant relationship with my 12 year old kid. Perfect…not. 😦
Okay Okay Okay I get the point…but the guilt overrides all of that. I express that I am fantasizing about life without preston here everyday. She asks like what.. I say, “oh sleeping in a clean bed that doesn’t smell of urine. Taking a shower without having 10 minutes of prep time to gather my things ( I have to keep everything in lockdown).., Not having to clean a shower so I can take one. Eating. Enjoying watching tv on a nice clean couch without feeling and smelling dinty moore on it..or ranch. I look forward to a clean screen,tv, mirrors, windows, and laptop screen”.
Then there is the “selfish part”, I dream about a friend calling and saying hey wanna go to dinner, a movie? Wanna go shopping? I want to say yes so bad, for 12 years.. if I do these things its planned way in advanced. I cannot even fathom a life that is lived with even the slightest bit of spontaneity. I yearn for it so bad. Possibly a real relationship, after all its been 11 years. lol I kind of dream of that… A LOT! I want to work out after work.. I WANT to work. I want to go to happy hour. I want to relax on a sunday morning read the paper and drink coffee. I want someone to say good morning to someone and have them say it back. I want a kiss goodnight from someone who doesn’t have a ranch mouth.
I feel guilty for these fantasies!!People in my life are struggling to live for God’s sake!!!
I know I know, I shouldn’t but I do, and that’s why I am in therapy. It’s so easy for others to say its okay he needs to go and have “professionals” help him. But this is my flesh and blood. Imagine your 12 year old and a car drive taking him somewhere and knowing that he will no longer be in your house ever again. Imagine its your baby, because in all honesty Preston can’t communicate all of his needs, I am the only one who knows his “jibber”. NOBODY can relate its frustrating to me. Damn it I miss my husband. People say “goodbye” to their kids going off to college or when they get married etc. Not like this. It sucks.
My big meeting that has been cancelled twice, now it is scheduled for Monday. I am very nervous and anxious. It’s me against “them”. A meeting with the big directors and head honchos. Ugh..I can do this. I have to. The therapist said something that made me have my “aha” moment of thinking. She asked me “so you’re doing okay now, do you see yourself doing what you’re doing with Preston for the next 5 years”? “no”. Can’t do it. I’m so out of patience with him. The other day I swore at him because he was stimming as I put his pants on, he wouldn’t hold still.. we were leaving to get HIS stupid cheesy bread!!! I yelled damn it why wont you listen why aren’t you putting your own “””ing pants on damn it Preston I hate our life! I walked away shaking… upset.. crying…I felt horrible. He cant help it. But I’m starting to really take it out on him. There have been times that he hits me and I hit him back. I’m not going in a positive direction with his behaviors. I can’t. I’m tired and emotionally exhausted. I’m having health problems due to our highly stressful life. I have to remember this. I’m following through with my plan. I have to.. for him.. for me. It’s ok. I’m a great mom. Yes I think… no, I am.
So now I need to visit two centers, One in Kalamazoo/Portage and the other in Caro. They are the same cost about $800/$900 a day. There are pros and cons to both. Originally I wanted the Caro one because its closer to drive to, but although its a nice facility, its older. The one in Portage is farther away, but its a newer facility. I feel like the Portage one will use more up to date techniques and strategies with him. I don’t want to visit, but I have to in order to make my decision. It’s going to be hard to imagine placing my baby anywhere. But I must. I have to, its a matter of living or living in hell and continuing to deal with emotional distress and physical abuse. My dream is that he thrives!!! I have talked to a couple of parents who have been through similiar situations ( which was no easy task to find parents who placed their kids in a home at 12 years old, google that and see what YOU get!) lol
Anyways their kids are thriving and adults now. The parents work hard to maintain proper staffing (the professionals I spoke of earlier) and keep them trained. But the parents say it’s worth it and the kids are doing better. Its hard for me to believe them so one mom said come see for yourself. She says she wouldn’t have believed it either. So one day when I’m brave and strong I will take her up on her offer, she and her son live in midland about 7 miles apart. She has a bf now..she works out and does yoga, she reads leisurely, and watches tv. Hmmm really? I can’t imagine.
I’m also preparing or trying to prepare myself for the stress of finding money to do this. I know as of now I will need a lawyer to develop a special needs trust so that any money for Preston is protected and the state can’t use the money as assets. They will take away his medicaid if I have ANY money in the bank. I need to think about fundraising and the legalities of that. I need to think of how in the hell I am going to get the state to pay for treatment for my son in a facility that charges $800/$900 a day.
If my ADD isn’t in full effect I just have to slightly start thinking of all these things and the ADD kicks in like a horse being kicked to gallop. My head is a wild storm, a hurricane, a tornado, whirling and destructive… then I find a bit of calm, and I blog, until the next storm comes along. God please let me be focused on Monday. I’ll keep you all posted.
Peace, love, happiness, health, and wealth.. not necessarily in that order..;) Lisa