busy little bug

Bug……..

…….funny, Its a childhood nickname that has stuck all these years. I feel like a bee, buzzing about trying my best to prepare, restore, protect, and enhance my child’s future. (mine too) Its exhausting. I had an appt with CMH ( Community Mental Health) it was at 8:00. I was late for the appointment only to find out it was a home visit. Grrr carry on. The appointment lasted until almost 11:30. It was extremely productive and consisted of signing many privacy releases. I have two of the most amazing workers thank God for that. I cried. I cried a lot. My blood pressure teetered on the brink of no pulse to feeling extremely panicked at times. Its scary, talking about placing my son in a facility and trying to come up with a plan that isn’t completely fool proof. The scariest thing is if my plan doesn’t happen. I have to remember that if it doesn’t I did my best. However, I think to myself that accepting no isn’t an option and it WILL work. So I’m hoping that I’m right. If I say it enough maybe Ill believe it and if I believe, maybe¬†it will actually happen. I left the appointment feeling accomplished and satisfied. I have a meeting next week that is pretty serious in regards to Preston. However I’m unable to discuss and yet I really want to. Its a terrible conflicting situation. As much as I want to share I just cannot ūüė¶

I left the appointment and was starving I didn’t have time for breakfast and I haven’t even had a drink of water or gone to the bathroom. I never did clean all of the goo from last night but decided to go to lunch with a friend instead. The goo will wait for me. Go eat, hydrate, breathe, it was a long appointment, I deserve lunch; besides I have a ¬†seize the deal burning a hole in my purse ūüôā I sit down waiting for my friend and order a water with lemon… If ¬†i’m getting water, I’m about to die of thirst because I hate it! I decide to finally use the bathroom I drank a HUGE coffee and feel the pressure on my bladder. I walk in and my phone rings.

Its the school social worker. I need to get P, he has had a horrific meltdown and its been an hour and a half. I panic. I always knew one day I would get THAT call, I wasn’t ready today. I need to get my baby. What happened is he okay? Are others okay? Did he hurt anyone? Is he hurt?¬†All¬†I know for sure is I need to go get him and fast! I buzz out of the¬†restaurant¬†cancel on my understanding friend who noticed me pulling out.¬†I’m¬†about halfway there and smoke a cigarette and when it sticks to my lip and I almost burn¬†myself¬†I¬†realize¬†I never drank my water, im dehydrated.. when WAS my last drink besides coffee? Crap.. literally.. i’m nervous and now I have to use the bathroom…I forgot I ran out of the restroom without¬†using it!!!! Now its worse I need to go number 1 and number 2.. lol (how old am I??.. seriously I’m a wreck and I think i’m going to shit my pants)!!!

I’m at the school. He is okay, hes calm now. I wait to talk to the psychologist. I explain our “situation”, in my eyes: giving them the courtesy of explaining the situation. In her eyes,”I need to do this, I need to do that. Maybe we can try this and that”. NO. Its too late and we need to do what I know needs to be done. “But”, she says, “No”, I say. This is whats best. She asks if I’ll sign a waiver so she can discuss this with CMH too, yes of course. Then I need to fill out a new med form so he can have benadryl at school to keep him stabilized until his Psychiatrist prescribes another medication. It needs to be faxed. I need to sign another waiver. Yes of course. I need to call CMH to let them know I talked to the school and explain the benadryl/ med form.

I text my mom. Can ¬†we come over Ill explain later. But I need to breathe. My head is pounding. I’m thirsty and I have to … you know..

Its well after 1:00. I take a while before I have the energy to tell my mom the day I had. I get something to drink and FINALLY get to use the bathroom. She lets me nap for a bit. I’m a happy bee…Until we get home, but that’s another blog and the goo will wait, this bug is tired. ZZZZZZZZZZZZZZ ūüėČ

“Typical” Night

It was a rough night. Preston got home from a not so good day at school and the guilt came flooding in. He had a field trip that I forgot about. Mother of the year :/ oh well it happens to the best of us…. Carry on.
He seemed to be doing okay and I was pleased. Oops too late screams out of nowhere. He’s frustrated and pinching and biting. I seriously have no clue why. I try to distract him by asking him if he wants cheesy bread ( his latest “crack food”) he nods yes & we go get the bread. He’s still upset but not as aggressive. I realize it has been about an hour since I medicated him… He’s on yet another new medicine. One more day of observing & if the rage resumes the med is doomed.
Home we are and he sat at the table to eat, started crying and the aggressiveness towards me started again. I redirect to a bath & try a new product that my mom and brother suggest. HUGE HUGE HUGE MISTAKE! The stuff is a mess! You put it in bath water and it turns to slime type of material. Great sensory play but apparently I did it wrong and it was equivalent to opening a diaper and pouring that jelly stuff in the water. I try to tell him get out… More rage and water and gooey diaper like substance is splashed and thrown all over the bathroom. From ceiling to floor.. **sigh** breathe… Don’t cry.. Don’t cry.. You just have to clean it no biggie. Carry on.
Rage hitting biting… Don’t lash out.. Leave situation, breathe.
Okay deal with angry P… Redirect to computer… Success!!! ūüôā I love you Bob the Builder & YouTube! Finish cleaning bathroom…text from latest bachelor: what are you doing? Me: not much … But I’m sort of busy can I text you later? Him: you always say that..
Preston is back.. Angry pulling on me.. Damn you Bob the Builder! Me: ha yes, well I’m a busy girl sorry ill ttyl ūüôā him: no response
Go to help p on computer, he broke the mouse. Crap. I’m doomed. “Preston you broke it, sorry”. Rage, he pinched me so hard while I was on the floor.. I fought back tears and pinching him back or hitting him. Please God give me strength. Please God help him calm down. He runs into kitchen shakes the refrigerator so hard that the door opens and food falls out. I can’t control this.
Benadryl
It’s only 7:00 but I seriously don’t know what else to do. Bachelor #1 (B#1)texts again: have you seen Harry Potter? Me: no B#1: it’s really good… All of them you should watch them sometime!!
DAMN IT! I drop the top to Benadryl and P took his opportunity to spill the sticky neon pink serum on the kitchen floor. Me: yeah ill try to get to that sometime B#1: what are you doing now?
melatonin
I can’t do this and I’m tired. I give him melatonin. He is willing to lay down in my bed. Awesome deal… Go for it.
Success. It’s 7:37 and he’s been quiet for ten minutes. ūüôā where do I start? The bathroom? Kitchen? The computer room? He knocked everything off the desk, including the monitor and keyboard. I should unplug it all and hide it or issues in the morning…
Ugh morning. All in all not a horrible night just a tough one….a day in the life… Note to self: add Harry Potter to bucket list lol
Crap I never responded back. I need to go pretend I’m normal while I clean goo from the bathroom ceiling. I am praying Preston sleeps all night.

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First Blog ever..

¬† ¬† ¬†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.. ūüėČ 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!

My goal:

  1. 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. 
  2. Make a plan for the impending release of him from the facility that meets his future needs
  3. Find a facility
  4. Find a way to pay for facility
  5. Get therapy to help me know I am not a bad parent for doing this
  6. 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…¬†Image