Well here it is. I’m starting a blog…I have so much to say that writing on facebook just feels awkward. So as recommended by many I am here to blab and mostly doing it for selfish therapeutic reasons. I am also hoping that if you know someone who faces a challenging life, like myself that you will somehow let them know they aren’t alone and hopefully we can connect and exchange stories and feel somewhat normal in a not so normal world of autism. Ill do a bio later but most know my extremely dramatic story. I don’t do anything half assed.. 😉 Meet boy, fall in love, get married, he dies, and 4 months later our son is diagnosed with severe autism. That’s the short version…
Today something profound happened but in order to understand you must know at the point I am with my son. There are no words that can describe our world. I call it our world because it is nothing like yours. (for my” neurotypical” friends anyways) Our home is consistent with one thing. Insanity. Period. At any given time you may find us eating our dinner in the middle of the driveway. Going for walks in rain gear on a hot summer day or see us in shorts on a brisk fall day. You may see us walking in a blizzard or bike riding in the rain. WHy? Because it makes the prince happy. He requires MASSIVE amounts of sensory driven activities. He has autism. He was just potty trained last year. He is 12. Yes I have cleaned poop and pee for 12 years. I have cleaned poop from the floor, the walls. the toilet, the kitchen, doorknobs, bedding, ceilings, light switches, my head, my hands, my face, his face, head, and hands, I used to call my house the poop palace, but clearly its Preston’s palace. He will kick holes the size of a suitcase in the walls, damage pictures, throw tables, chairs dishes, food drinks, or himself whenever and however he feels is the right time for him. Mainly during meltdowns and being told no over ridiculous requests. For 11 years I have spent every last dollar on therapies for him. I am foggy on what has worked and what hasn’t. He is big now. It hurts really bad when he kicks, bites, punches, pushes, and shoves and head butts me. I’m tired. No i’m exhausted. No i’m emotionally and physically exasperated. I decided some time ago it was time for drastic change. Not sure how or when or where but I knew something had to give because I’m losing it. Literally. My hair is falling out, I have aches and pains and most recently sharp chest pains. Some days I can barely function. My brain is toast..constantly worrying and constantly thinking of whats going to happen next. Its time to get help. Ove rthe holidays i thought he brokemy arm and had it x-rayed. It wasn’t broke but when they noticed the bruises up and down my arms, they asked if i wanted to make a police report on my child. Really? Ummm reality check. I’m being abused. I have been for 11 years…now tell me that isn’t disturbing!
- Temporarily place Preston in a residential facility so that I can rest and have a clear functioning brain to make the right choices for his future.
- Make a plan for the impending release of him from the facility that meets his future needs
- Find a facility
- Find a way to pay for facility
- Get therapy to help me know I am not a bad parent for doing this
- blog every step of the process so hopefully others will benefit in the future
So I found a facility its called Lighthouse Center in Caro Michigan. WOOT WOOT! That’s number 3! Its…. GULP >>>> … How much?? $900.00 a day? Private pay insurance doesn’t cover it? Oh okay I need to work on number 4. Oh wait after about a month of contacting lawyers and googling resources and centers and insurance companies and state representatives.. HEY.. guess what, ARC of Midland County is my saving grace. Yep a non profit dedicated to helping families living and dealing with autism. They heard my story and I talked to the executive director. The ball is rolling…they will try and help me get the temporary facility covered and come up with a plan for Preston. I was not wrong. Its in the Americans with disabilites act: My son has the right to live in a safe and comfortable environment outside of our home with properly trained staff and that doesn’t mean I give up my parental rights, contrary to what I have been told forever.
I’m scared and excited all in one. The day that he goes to live somewhere else temporarily will kill me, however if his behaviors do not get under control this is his future:
Kicked out of school, placed in foster care, bounced around from group home to group home, because of non manageable behaviors, eventually so highly sedated that he will just lay in a bed developing decubitus ulcers, or sit in a rocking chair..think of: “One flew over the Cuckoos Nest”, yes that bad. That is my son’s future unless I can get him under control and it’s kind of a time bomb.18 is not too far away when he is almost 13 years old. The thought of this gives me panic attacks almost on a daily basis.
Okay head, don’t go there, ARC of Midland County, thank you. For the first time in months I don’t feel so defeated.
So buckle up people…I’m going to need to vent. This is going to be one of the toughest decisions I ever make. If my plan fails, I have no plan B. So failing as usual, is not an option in my world.
Someone find my cape please… the rest of you,please pray.
Pray that I get the help and resources and strength and courage I’m going to to need to fight this battle ahead.
Oh yeah and get my research papers done on time,( I’m a full time student obtaining my elementary and special education degrees) keep up my laundry, pay my bills, try and work, keep up on medical forms, schedules, meetings, therapies, lose weight, LMAO, try and find a boyfriend, wait try and have fun, remember to take my pills, pretend to others I am normal and happy, put on make-up and do my hair (when I look nice on the outside people think I’m okay) give Preston his pills, keep up on the daily school notes and programs, make sure I make time for a therapy visit for myself, take the trash out, Play word, do the dishes, post on facebook, go to the bathroom, try and poop…oh yes and for goodness sakes.. I have got to try and shower daily. Shaving my legs would be nice more than once a month. LMAO okay okay…I know that’s asking for a lot. Stay tuned…