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!

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InSain crisis 

As many of you know Preston is in crisis mode, but is now mostly stabilized. It started when my bf, his son”J”, & I picked Preston up for a spring break getaway. I wanted to take him to a hotel with a pool & just hang out with him for 2-3 days depending on his ability to be there without meltdowns/rages.

The day started okay & we arrived in Holland at a nice hotel with few guests. Perfect. 

We took him swimming & afterwards he wanted chips & salsa. I told him we had to go get chips & salsa at the store but he didn’t want to go. That started the meltdown that ultimately turned into rage. While my bf went into the store to get it, he attacked me & disrobed…(got naked). 

Once we (barely) got him back to the hotel he then perseverated on wanting to go inside the store we had just left. He also wanted Todd to leave. It was ugly. He broke a light, a blind, & put a hole in the wall. He scratched both todd & I. He attempted to break windows in the car, the hotel, and my phone, the register (heater vent or whatever) & he did break his tablet. 

The good news is “J, (Todd’s son) was safe in another hotel room next to ours. I explained to him the situation & Todd continued to check on him. He had never been exposed to such a scenario…. #autismawareness @ it’s finest. 

So from there I called 911 because things were obviously continuing to escalate and I had zero “tricks or tools” left to control the situation. I was helpless & not in control. P was taken by ambulance to the hospital to be sedated. Then released oncesedated & “stable”. I was exhausted, we all were. I decided to take him back to his group home. We drove 3 hours back to Genesee County. 

We slept for about 6 hours when I received a phone call that Preston raged out from the moment he woke up. He was currently handcuffed & being transported via ambulance to the hospital (again). I was also told that Glen Hollow through Spectrum Health Services could not allow Preston back into their group home because of his severity. They are “not equipped or set up to handle such cases”. 

So much going on that I don’t even know how to update y’all. Seriously I don’t. 

The basics: Preston is in a controlled environment. We are safe, first & foremost. The goal at this point is to stay here at the children’s hospital until a bed opens up at one of the following 4 psychiatric units: 

Harbor Oaks

Pine Rest👎🏼👎🏼👎🏼👎🏼👎🏼👎🏼👎🏼👎🏼👎🏼👎🏼

Stone Crest

I’m hoping pine Rest is not the place because it will not be suitable or appropriate for his needs. 

The waiting list could take an hour more or a month & a half. We don’t know, however he is considered priority because he is in the hospital. 

The goal @ the psychiatric hospital is to do a “med holiday”, basically taking him off of everything & trying new meds. The process has already been started here & it’s not pretty. It’s utterly sad, depleting, & emotionally tolling. 

The psych hospital stay could be 1 day to two months, depending on he reacts to meds, etc. 

Once the meds are figured out, he will go back to where it all started: GREAT LAKES CENTER FOR AUTISM & RESEARCH …. or Great Lakes/ GLCAR. 

FROM THERE, they have a new step down program. In addition once P is 18, I can bring him back to our county!!! 🙂 

So in a nutshell that’s where we are. The first night hotel was $200, last night was $45. 

Tonight, Monday Tuesday & Wednesday will be $90, that’s the contracted/discounted rate through Helen Devos. I’m on the waiting list for the housing at the hospital for $25 a night & the Ronald McDonald house, which is $20 a night recommended donation. I’m praying I get in one of those places because just 4 nights is almost $400! That doesn’t include food …. 

I  glad we just took a vacation, but had I known what was to come, I wouldn’t have gone, but we all deserved the break. J deserved some time with us because due to the same circumstances he got “robbed” from Christmas & New Years too. 😦 

Anyways….. I guess what I need from everyone is good vibes thoughts & co tinted prayers! We appreciate everything & we thank you so much!!❤❤❤

Lisa & Preston ​