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!

Advertisements

InSain & carrying on…

It’s been a long time since I have blogged. I guess the old saying is true, “no news is good news”. Things have been crazy but good. I guess I’ll start with the personal stuff…Yes I had a boyfriend named Todd for a while. We had some issues and we thought it was best to end our relationship. Well, that didn’t go so well and we ended up working out our “wrinkles” and we are now happily back together. We live together and do our best to mesh our lives and families. He has two children that are 18 and 14. We rarely see the 18 year old but spend as much time as we can with his 14 year old. He’s a fun dude and I love them both. We also got a dog… he is the most amazing dog. He is exactly what I needed and is great for my heart and soul.

Now about Preston. Lets start with a timeline…

timeline-for-p

 

1—-On July 29, 2013 Preston was placed at Great Lakes Center for Autism and Research (GLCAR) in Portage Mi, near Kalamazoo, he had just turned 13 years old. The facility is for those with severe autism and behavioral issues. They use intensive treatment and therapy called Applied Behavior Analysis (ABA). It is a lock down facility, meaning in order for Preston to go outside use the bathroom, or go into his bedroom, he had to get a staff member to unlock the doors for him to do so. There was nothing in the rooms for him to get to without staff getting it for him. It is sort of what you think of when you think of a prison. I hate to say this, but it’s true. He went to school there and I wasn’t extremely happy with his treatment or the school. With that being said, Preston’s behaviors DID decrease and ultimately I had to think of it as tough love. After about 14 months Preston’s “team” (myself included) decided it was time for him to move on to another facility that was a least restrictive environment (LRE) because his behaviors had substantially decreased. SO the process began to find an appropriate place and we decided on Wedgwood Christian Facility in Grand Rapids Mi.

2—-On November 5, 2014 Preston was transferred to Wedgwood Christian Facility in Grand Rapids Mi. It was a really unorganised and chaotic transfer. I was an emotional wreck. It was the day before my wedding anniversary to his deceased father, Chad and he was now 15 1/2 years old. Wedgwood was a step down from GLCAR. This facility was still a restrictive environment with cement walls and everything was locked. He still had to let staff know if he needed to use the restroom or go anywhere outside of the main room where he spent most his time with other clients. The main differences and positive aspects of the new facility were that there was a huge window in the main room for the clients to look out of, in addition he had a window in his room. The window was locked but could be opened if staff did it. It had a metal grate like cover though. This was so that he couldn’t break the window and of course to keep him from getting out of the window. The staff at Wedgwood was much more relaxed and personal. They used the ABA therapy but generalized it into his daily life. It was no longer intense one on one every day. He was also allowed to go into the community on outings with staff in a van. This is when he discovered the store, $5 and below.. 🙂 His favorite outing. His behaviors stayed at a reasonable level and still decreased. Around August 2015, the team decided that Preston was ready for his next transition to an even more LRE (Least restrictive environment). It took a long time and much confusion before we knew where he was going to be placed. The most crucial decision was also documented at this point. It was stated and documented that even though Preston’s behaviors were decreased, he still required constant 24/7 care and supervision. He still has massive meltdowns and rage, it’s just not as often. He cannot be left alone and will require 24/7 care for the rest of his life. NO DUH! lol However, this is what the state of Michigan needed to hear from professionals over the years of documentation. So there it was. Mission accomplished. Preston will nopt come back home. Not that I am happy about this, but obviously I can no longer care for him the way that he needs. It takes a team of staff members. We finally found a suitable place for Preston’s best interest. This place was also in Grand Rapids and he would not have to change schools, which is fantastic! I absolutely love the school he goes to.

3—-On October 28th, 2016 Preston was transferred to Glen Hollow home in Grand Rapids (Kent County) Mi. He is now 16 1/2 years old. He would be a junior in high school. Once again it was a tough move but an exciting one. For the first time in 3 years, my boy has a bed that was custom made by my bf Todd. Glen Hollow is a test. A HUGE TEST… a test that determines his fate. It is basically a “regular” house in a “normal” subdivision. He lives with 3 others in the home and has 24/7 staffing. There are no locked rooms. He is free to pee!!!!!!!!!!! He can go outside, in the kitchen, in his room, in the basement…. all at his own convenience and desire. It’s a great place and it has only been one week as of today! The goal is for him to be able to be in a group home for adults when he is 18. So far he is doing okay. he is still smearing his poo all over the place but that is what he does under stress. I am going to visit today and the director believes that he should get a tablet for his entertainment! I’m nervous and excited about this, because a tablet can also bring on behaviors. If the battery dies-meltdown, if it isn’t working the way he wants- meltdown, if he has to go do something like chores or go to school and give the tablet up- meltdown. UGH I am praying it goes okay. Time will tell. Let me note, it is also 2 days before mine and Chad’s wedding anniversary. We would have been married for 16 years!!!!

The next step for Preston is a group home in Genesee County…. Hence Pal’s Place.

house-signing

*************** Here we are signing on to the new house for Pal’s Place************

Preston And Lisa Sain’s Place (Pal’s Place) will be a small group home for up to 6 adults with developmental disabilities and delays. (DD) It’s a huge venture for me and also a huge dream. I wanted a daycare for special needs, but it never happened. Now I know why. God is funny like that…. he leads us unto the right path. I am so grateful for the guidance. So in a nutshell, that’s what has been going on. I know many have been confused and not completely understanding the situation and I hope this clears up the confusion. Soon I will be posting a link to Pal’s Place so you can see how that is going. It’s keeping me extremely busy and poor Todd is working night and day…. he is a manager for a major supplier for GM and then comes home to my moodswings. I’m generally a hot mess. LOL “hot mess express”. I worry about Preston, his future, my future, the new business and whether or not I can make it a success, not just for P but other adults like him and their families.I’m lucky to have this amazing man in my life. He pushed me to finally do it. He made me cry because one night he just said… ” I believe in you. You need to follow your dreams, if you don’t try you will regret it for the rest of your life”. The next day I started looking at properties and well…. here we are. He is helping me in every aspect! Not to mention my family and friends. I couldn’t do it without you!

 

So it goes…. moving on…. Keeping on keeping on. 🙂 We are in a good spot. As a parent of a special needs child with severe issues and behaviors we will always worry. Just like a “typical” parent of “typical” children, but different and more. I am doing everything in my power to make Preston happy, safe, and healthy before I die. I have no doubt Chad would be happy with my choices and where our son is now. Not to mention a man in our life who supports us and loves us. Instead of being sad on our anniversary, I will think of it as a celebration. It all happens for a reason, I do belive that damn cliche!!! Thank you for helping me make all of this happen! I love you all!!!! xoxo

Peace, love, health, and happiness to you all!

Lisa and Preston booty boy peanut boodah… 🙂

FullSizeRender (2)

 

 

 

holiday