Are you there God? It’s me, Lisa

So the day was pretty shitty, not gonna lie. I got a two & 1/2 hour break & left the hospital & I was grateful to go do a little thrift shopping. Came back to craziness. It’s pretty much been a 4 hour meltdown. I’m tired but not as bad as the first couple of nights. My faith only gets stronger, even though I get upset. I’m not sure why, and I’ll forever be guilt ridden….. I believe in God & his work. The first night here and then tonight, I prayed for something unimaginable. Please don’t judge me, or go ahead……at this point I’m not sure that I care.

As my son was thrashing about and crying, doing his very best to talk and plead by saying please, no, and trying to express his frustration as he was being handcuffed, sedated, poked with a needle, and restrained…. I asked God to just take him. Yep. I did. It was so torturous for him, I asked God to just end it… for him… for me….there are no answers, no magic pills. I wish I wasn’t admitting this, but it is the honest to goodness truth. To see your child suffer SO DAMN MUCH, DAILY… hourly… yearly… and to keep “putting the fires out”, is exhausting. It takes it’s toll.

I have been through every therapy with consistency. I have listened to therapists, doctors, teachers… I’m sick of it. I want to throw in the towel. But I won’t.

I went to college to get my special education degree so that I could earn a living. It was the only job I could think of that I would be able to manage Preston. I could take him to work with me and bring him home afterwards (on most days). I was almost finished with my degree when he was placed at Great Lakes Center for Autism. Then two other facilities after that. This is when I realised that teaching wasn’t going to be an option. Placing P into a facility has been a huge eye opener to what I already knew but “didn’t know”. The care was going to be so much more than what I thought it would be. Especially being so far from home. I’m involved in his well being almost more now than ever before. I have to help with his plans of service in many capacities… academically, in his group home, and in regards to his health care, and therapies. It’s been a full time job. I knew it would be, kind of like you know childbirth is going to be hard… but until you do it… you dont know…. or raising a pubescent teenager, going through a divorce, being widowed, losing a job, etc etc…. It’s also harder because I have to make my decisions and judgement calls based upon the staff at his school and facility, versus my own knowledge from handling him firsthand.

So here I am at the hospital in crisis mode… im asking God to end our lives….and yet…. I still want to open a group home for the developmenatlly disabled. My parents must have dropped me on my noggin one too many times. .. seriously!!! But the truth is, if I’m going to continue to give advice, hold other families hands through crisis, volunteer for services for the special needs population, continue as long as God allows me to in the care, happiness, and safety of my son..why not get paid for it? I have a gift; and it is more than being able to make people cry ;-P

I have heard it from othr parents, doctors, therapists, social workers, friends, family, police officers, strangers, and teachers. I truly believe this. I also believe I am here for this specific reason.

It doesn’t mean I understand it. It doesn’t mean I’m not angry at God at times for such pain and suffering. I would imagine it’s the same feeling every other human has felt dealing with……possibly a terminal illness. You either come out on top a survivor, or you learn to find positivity from such tragedy and loss. It’s a choice in my opinion. I choose to fight. I will not go down without a fucking fight. I may want to die and take my son with me, but I won’t. I may be angry at God but it won’t be forever. I will never lose my faith…. NEVER.

It is autism awareness month, I am not alone in this battle. My heart breaks and a little bit of my soul is gone daily because of the hurt I see from so many friends that I have gained through autism. I will do another blog that shows a tiny sliver of circumstances. I hope you don’t turn your head. I hope you ask someone you know what you can do to help. I went MANY years with VERY minimal support and had to develop thick skin because of the judgement on my parenting and housekeeping skills & lifestyle.

I am here to tell you that at times there have been 13 people in Preston’s room here at the hospital trying to control the situation. We are the only room that HAS TO HAVE a MINIMUM of two TRAINED behavioral technicians in the room with us at all times. The second you clean up a mess another is made, then he has a meltdown, then you need food, then he needs meds, then you need to make sure his tablet is charged, then he wants a drink, then he has to go to the bathroom, then he pisses on the floor, or poops all over, then you need more clean clothes, then he gets violent because his snack wasn’t there on time, then you slip on his magazines and he’s angry because you forgot to shut the bathroom door, now he wants outside, then he wants popcorn, then he wants you to whisper and he hates the man wearing glasses, then he wants the girl who was there an hour ago but her shift ended, then the psychiatrist needs you and while trying to tak to her he pulls my hair, they call in more security and then I hear the social worker needs to talk to me. Then I feel dizzy and light headed because I haven’t had anything to eat or drink and it’s 3:00 p.m. I’ve sent my Aunt around town for countless items…. a therapy ball with pump, chips and salsa, pads, carmex because my lips are so chapped they hurt, jergens because it’s the only lotion P can tolerate and he is “rashy” from laying in his own urine from both the group home and hospital. Multiple food runs, underwear for Preston because he keeps ripping his up and he is only alloowed hospital gowns or underwear. I don’t know….what else but literally she has spent the day running errands for us.. (THANKS AUNT MRS> PINK…)

 

This is all within 30 minutes and the day continues like this. So yes, my house was a pig sty…. but did you ask if you could help clean? Did you offer to do a load of laundry for me? Did you ask if I needed my lawn mowed? Did you ask if I needed groceries? Did you? The majority of the people in my life didn’t. Yeah, Im pissed tonight about it. I’m sure it’s just my lack of sleep and my highly strung out emotions…but there are SO MANY FAMILIES that need help. Our mental health care sucks in this country. Not as much as in 3rd world countires…. but my goodness. Im a bit angry. I’m bitter. I’m pretty damn sure if every person gave up a Starbucks or their Coach bag, or giving their kids the newest latest and greatest xbox or playstations for ONE DAY…. we could help so many people. Im going off on a tangent now, but seriously.

Anyways if you judge me, have judged me, or any of my friends in the past….. Maybe you should say sorry.

You just can’t understand. We don’t expect you to. We just don’t want or need the negative judgement… we do that to ourselves enough and tenfold. Even other autism parents judge one another… STOP the madness… just like fingerprints… no two people with autism are alike. Nor are the components of our lives that add to our individual conditions/situations! SO STOP JUDGING…

For those who have supported us in ways that they could… GOD BLESS YOU!!!!!! Seriously, you helped save our lives. I don’t even know the point of this blog tonight.

I meant for it to be a huge thank you for support and instead I got angry and psycho….. shit happens. lol Love you all… I’ve got to go, P is about to get his 12:00 new medications.

Stay tuned for autism awarenes posts from my friends and you will see that our circumstance is not uncommon, unfortunately.

Signing off…. and leaving the floor where P is….. I need a cigarette and a coke then some rest and hopefully a shower in the morning. Although my Aunt insists she has some lady powder “for that”…. wtf does that even mean? OMG she is going to kill me, maybe she wont read this…lol It’s almost 1:00 now and I need to walk 2 football fields and around the hospital to smoke… good time to quit… NOT! lol love most of you…. goodnight.. Thank you for the prayers and please keep them coming!

xoxo Lisa & P!

Autism Awareness Month

Last night I had sex with a stranger, I walked naked in my house while drinking a nice glass of Merlot. It was magical and the first time I had experienced such an amazing fantasy. I listened to john mayer as the handsome man strummed his guitar….

I want to say some things about autism… but first a quick update on P! I have been told that they are “revamping” the program at the house in Grand rapids!!! 🙂 Hopefully P will be able to move into “the H home”!!!! I am really excited because this is the house in GR that I REALLY fell in love with and I think he will love it! He will not have to change schools and that is HUGE for him! YAY. Please pray that my sweet lil man gets what he deserves and has earned… a safe place without so many restrictions and more freedom! I’ll keep you posted! 🙂  Also sorry about the beginning of the post, I was just trying to get you here with your deviant curiosity 😉 It worked… PLEASE STAY AND READ THE REST!!!

Now autism awareness month….. Many of you are aware of my friend Kelli. Once she was incarcerated a mutual friend and I decided to put up a facebook page to support her and others. That page turned into something quite spectacular. It is FULL of families that live with SEVERE autism. The women in this group are nothing short of amazing and deserve to be put on pedestals. They deserve medals. They are soldiers of a war that will never end. I know to some that statement is possibly insulting, I don’t mean for it to be.  I do not know what it is like to actually be in the military and go to war, but I do know that there have been studies that have been written that show that parents of children with severe autism suffer from the same stress and PTSD as those who suffer from war trauma. I sincerely apologize if I cannot find the right words to describe what I am trying to say.  If you are currently serving… thank you… to the veterans… thank you! 🙂

SQUIRREL…..

Anyways…. so the facebook page has these wonderful women who share their struggles fears and triumphs daily…. unfortunately.. the triumphs are far and few between. When I say severe autism, I don’t just talk of a child who smears their poop, flaps their hands, and doesn’t talk. (although this is not excluded from the wonderful components of a developmentally delayed person). What I’m about to speak of doesn’t necessarily mean EVERY person/child with autism goes through this. They have all or some of the traits I am going to talk about. HOWEVER, I am speaking about the “exclusive group” that was formed. The club that none of us signed up for. In this exclusive club our children do the following:

They eat non food items like drywall, glass, dirt, furniture, candles, etc. This is called PICA… google it, it exists… we aren’t bad parents.

They  have aggressive behaviors.. they hit. they punch us. they pull our hair, they throw things. they bite. Some have torn off refrigerator doors, picked up couches, tables, beds, chairs, lamps, dishes, etc and literally tossed them as if they were a ball of thread.

They have this whole superpower thing going on. They can go for days with MINIMAL hours of sleep. Seriously… DAYS, MONTHS…. Imagine, oh… lets say, three days and during those three days you only slept for 9 hours combined of broken up “naps”. yes it happens. ALL THE TIME!

Many of our kids are emotionally conflicted. Yes they have cognitive deficits. However, they are also very smart. They struggle with their emotions because they feel trapped by the autism. If they can communicate, sometimes they will say things like

“nobody cares about me”  “I want to die”  “I hate my life”  “Do you love me”  “I don’t have any friends”  ” why am I different”

Can you imagine as a parent the heart break? UGH…

I could go on and on. I won’t. What I would like for you to do to help is to just ask someone you know that is the caretaker of someone with autism what you can do to help. Sometimes 15 minutes can do someone a world of good. It may give them a much need rest, a shower, the chance to use the bathroom, maybe eat something, hydrate, etc. Sometimes as an “outsider” you don’t know what to do. Believe me, we will tell you. LOL Sometimes just being WITH us is helpful, we know you don’t understand autism and our kids. We also know that many times that we cannot leave you with our children because of your safety. We would never let you get hurt. We are used to the abuse. We will continue to be the punching bag, but if you could just maybe carry in groceries, or offer to make dinner, ANYTHING! The worst thing you can do, is not ask.

We are ashamed. So we may turn you down. But don’t let us. INSIST on helping. DO NOT TAKE NO FOR AN ANSWER! We don’t want you to see our house. We are ashamed because it smells like poop and pee. Our walls have holes in them. We don’t live like you do. We want to, but we can’t. So if we say no….. it’s not that we don’t want the help. It’s that we are ashamed and trying to hide the fact that we belong to this exclusive club. So insist on helping. 🙂 The person you help me be one inch away from jumping off of that cliff. You may be saving a life, or worse… lives.

So these wonderful people that belong to this exclusive club have a video to show you our little brave warriors. We love our kids so much that we have given them our lives and our souls. The biggest thing you can do to help is to not judge us, try and be understanding, acceptance, and educating yourself. If you do not want to do any of that… but you want to help.. you can always throw some cash out there. ;-P

Yes really you can. 

MAKE

IT

RAIN

One of our slick moms dug into her own pockets and paid for a website and business. She did it because although the “little things” our kiddos need seem petty, they add up. There was a time I struggled to keep up with P’s dinty moore phase. He was eating about 8 of them a day….as a snack. He went through pull ups like an elephant eats peanuts, I went through sheets like a hospital, our water bill was around $400 a month. Seriously the shit adds up to major bucks. You get the point…so the website unlike other organizations that are non profit and takes your graciously donated money which goes into a big pot and we aren’t exactly sure where all of the funds go; is different. ALL MONEY donated will go to specific needs like clay, sheets, beds, etc.It wont solve our problems, but it will help alleviate a tad bit of stress for both the autistic person and their parent(s)/caregiver(s).

I also have a family member who is donating 20% of sales from a “posh party”

*please see link…

So I am done with this long post. It’s late. I bet most of the people who actually read this tonight are friends of the exclusive club they don’t want to belong to. If you read this, I love you. Keep on keeping on…..everything is temporary and remember … more than anything… you aren’t alone. There is no cure for autism. It’s never going away. But you’re thought of by many and we love you.

For those who don’t belong to the club… open your hearts… if you can’t do that.. then open your wallets… 😉 Thanks… Godspeed.

http://autismhopes.com/

 

https://www.facebook.com/events/714050858700441/

https://www.perfectlyposh.com/poshcity/events/776340

http://autismhopes.com/

 

Lastly, a huge thanks to you Kelli, through your family’s pain, trauma, heartache, struggles, stress, and tragedy; you helped us find each other. We are EXTREMEly grateful for having one another to vent, to share, to love, and have our moments in our exclusive club together. Thank you to all of those who I have met through KS. My son and I are survivors. We couldn’t have done it without you. 🙂 I love you. Funny thing about tragedy, it makes you victorious and valiant.