No news isnt always good news

Life has been rough.

My boy isnt okay.

Please pray for him

I’m debating on deleting my blog.

My son is my main priority in life.

I started this blog as a way to inform my family & friends of our dire situation. I wasnt sure what would happen to us. I still dont know. However, since starting the blog it has helped my friends, family, & strangers understand our severe autism lives. We have more support now than ever before. For that I’m grateful.

I used the blog to vent and as my therapy. I now have 2 dogs that are therapeutic to me & a boyfriend of 5 years! 😳💙 He is my rock.

I’m so busy with the new group home we started and trying to advocate for my son (& others) that I just dont have the time or the emotional stamina to keep blogging. It takes a lot out of me to Express in words how things are going & to convey it in a way for the “typical” population to understand. Autism has a world & language all of it’s own.

I guess I’m trying to figure out if I’m taking a leave of absence, a sabbatical, or if I’m retiring from the blog world.

In my neverending pursuit to happiness, I guess I just know I have to focus on life. I’m still fighting for the business to work out. Currently I’m “rabbit hole”ing” on the idea of Pans/Pandas, OCD treatments/therapies, titrating my son off of all of his meds, researching ECT therapy, and medicinal marijuana for autism and/or all of the above diagnoses.

We need the classification of marijuana changed. It’s a schedule 1 drug…the same class as HEROIN! 🤦‍♀️ until that changes, medicinal marijuana cannot be given in a group home setting. 🤬 So if you feel the need to get involved & help many people, I encourage you to do so!

I’m going to say goodbye, but I think as a happy medium, I’ll continue to blog but I wont make them public. That way I can write if I need/want to, but not necessarily post it. 🙂 I am such a genius problem solver…..😂

Peace love health & happiness to you.

Until next time…..or not.

I’m signing out

Lisa,

Mother to Preston an adult with severe nonverbal autism who needs me

 

 

 

 

 

PALS … (Preston And Lisa Sain)

Much to my own dismay….. please watch the long and boring video …. ugh……

I could have wrote, but I don’t have the words….It was easier to just talk. I hope you all understand. Thank you… Lisa

350 days

350 DAYS until my boy can come back home. I’d be lying if I said I wasn’t nervous. I am.

The truth is that in the past we have failed him. Preston falls in with a group of kids his age that ABA was not prevalent in treatment when he was younger. If we had it, families paid out of pocket because insurance doesn’t cover it. We didn’t have ipads or the latest technology to help them. We paid out of pocket for EVERY therapy because there is no cure for autism. So I suppose in voters/legislators/ state/federal/insurance companies minds they decided,  “why pay if there is no cure and it doesn’t help”?

Leap forward to 2017, we now know it DOES indeed help. A bit too late for some, but better late than never.

My son has been abused, traumatized, and emotionally detached and defeated. However, this time we are trying with more educated decisions. I applaud the above mentioned team members for trying again, with a better plan for him. Even if it took (more) blood, sweat, and tears (again).

Yesterday I recived the news that a contract is in place for P to go to the Great Lakes Center for Autism & Research (GLCAR) again in Portage Mi (near Kalamazoo). The plan is to have him there until behaviors decrease and he is stabilized. Then hopefully place him into a program (brand new) that helps with the transition from a restrictive environment ( meaning lock down facility, concrete walls, limited access to windows, 24/7 care, etc) to a Least restrictive environment (Meaning a group home with doors, windows, home like setting, more freedoms etc.) The goal is that he can come home to our county and live at PALS… the group home I am starting for him but will also benefit others with autism.

I’m scared shitless. I’ve never been in management, I’ve never owned a business, I’m afraid of failure, I’m afraid P and I will not succeed.

However, I have no other choice. I love him more than anything or anyone in this world. I have to try to find placement that meets his needs. I have been fortunate enough to get help from friends and family on this venture. We thank you.

So the clock is ticking and I am feeling the pressure. I am almost finished with my degree and after a year hiatus (due to stress and life and P) I am enrolled again and will start in a week. My plan is to knock the rest of the classes out and be done. Then I move forward one step in front of the other to make this happen for my boy.

Some days I am confident and other days I think I have lost my mind. I suppose either way, it doesn’t matter. I’m doing it.

 

I have so many friends that are heavy on my heart lately. Autism is not a gift. Not this kind of autism anyways. I don’t know one parent who thinks that self abusive behaviors are a gift. Seriously…… The autism nobody wants to hear about. Its not a gift. It’s a sad lonely, terrifying, isolated, hopeless, and unfair life. I wouldn’t wish it on my biggest enemy. Cliche, but true. So please pray for those who are struggling. It’s all we have.

The latest hospital stay for Preston has been tough. I did have feelings…….. (ugh)  of not wanting to be here anymore. I had feelings of wanting to end his suffering. Then I think of my friend Kelly, and I think that her torment and guilt will never be less, but more acute. Of course her incident wasn’t completed. Believe me, I’m glad…. for the most part. However, I still struggle with the constant torment that is betrothed upon us, children and parents alike. It’s unsettling to know I still harbor these feelings deep inside, but I’d be lying if I said they didn’t. I’m not afraid to die, and to me that is really scary. I’m only afraid to die and leave P behind. I know I am not the only one. I subject myself to scrutiny writing this, but I do it because I need others to know that they aren’t alone. Cliche (again) but very true.

So we shall carry on as soldiers do. No worries, I’m not unstable or in a crisis (anymore). I am just a mom to a boy with severe autism who is doing her best to keep her shit together and do what is best for her son and others.

Please pray for safety as we transfer P 3 hours from one side of the state to the other. Mostly pray that his transition goes as smooth as possible.

Also TRY your best to understand instead of being all judgy and pointed fingery…. because mean people suck and uneducated people are dumb by choice. Those with autism don’t have a choice to be the way they are.

keep on keeping on … xoxo

InSain but Stable 

 

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!

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 ​

​

I figured it was time for an update, so many things have been going on in our lives. Im going to start with the bad.

October 28th 2016, P was placed into

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…

 

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.

*************** 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… 🙂

 

 

 

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.

 

Life is Sain

Wow!!! It’s been a long time since I’ve filled everyone in. I cannot express how wonderful life has been. I also cant believe it will be 3 years that my boy has been out of the home in June. I just cant believe it. Some days it feels like yesterday and some days it feels like it’s been a decade. My heart breaks missing him. However, as I have said a million times, I know this is what is best for him. I finally feel okay with “matter of factly” stating, it’s also what is best for me without too much guilt.

 

So where are we?

Preston is doing way better than I ever imagined. I’ll never know 100% because I only know what they tell me, and how he looks and acts. As his mom, I know things aren’t perfect, but life isn’t. I know nobody can care for my baby the way I can, but I also know he needs to learn to live without me. He needs to learn to communicate to others and not just mom. It’s working. He is maturing, thriving, and growing like a weed. His biggest issues are with any slight changes or variation in his routine. The facility he resides in has been open for 55 years. The director of the program told me that in his 30 years of working in the field, he has never seen a child that needed such rigid and consistent routines. Unfortunately in this field, direct care workers come and go more than Michigan seasons change. This is when he struggles the most. Which is very understandable. Different people do things a different way. Not to mention them getting to know Preston and how he communicates. It’s like a baby who cannot talk and only the parents know what the different pitches of cries mean. It’s the same with P and he gets very frustrated. Even the routine of showering can be annoying and frustrating to him. If he first takes his left sock and shoe off and someone else tries the right side instead, it can send him into a fit. I’m not sure if he will ever be able to adjust and fluctuate in these ways, but I hope so. Other than those “typical” autistic traits, he’s good.

He’s doing so well that it is time for him to go into a “stepdown program”, which I described in my previous blog. The problem in this actually coming to fruition is frustrating. So let me TRY and simplify this:

Originally I was told that home “G” was not a good fit for P because he needed a more restrictive type environment when he left the Great Lakes Center for Autism. So he went to where he is now, at Wedgwood. Now it’s time to go to the stepdown home “G”, but I was told, no he needs to go to home “H” so I went and visited and fell in love with it. The pros are that he stays in the same school district and area, which is amazing. So I get the ball rolling and I adjust my emotions to place him there in Grand Rapids. Only to hear months later that it is not a good placement because it is temporary placement. Like no more than 6 months. So I had to decide if I thought P coming home was a good option. That was tough, because of course I want him home. He will be 16 soon and only has 1 year and 9 months before he can be placed in a group home for permanent residency. I do not feel that psychologically bringing him home then making him go into a group home is a good “move”. So I decided to keep him in residential for the rest of his life. OUCH. Typing that brought immediate tears. I hate autism.

Anyways, so now I am told by the state that the better fit would be home “G” and it is the place he needs to go. Now I’m upset, it means another move across the state. He will have to change schools. UGH! I LOVE his school. He LOVES his school and teachers and bus drivers, etc. However, I don’t have an option. So I mentally prepare for the next journey. When BOOM… another roadblock…. Supposedly home “G” doesn’t have enough clients. P would be the only one there and it’s not financially feasible to keep the home open with only one client. Of course I understand this, but I’m frustrated.

Once again… money is the root of our problems (and other family’s). The need is there for these homes to be open, but the state can’t/won’t pay for treatment. So it is possibly closing.

Back to square one. Preston has graduated and has no place to go. I don’t know what to do next. I’m waiting to hear back from many people who are very sick of my voicemails. I know why they aren’t returning my calls, because they don’t know what to do or say. In the meantime my son who deserves freedom is still in “lockdown” because the state has no answers.

So that’s where we are. It’s annoying as heck, but I must have patience and faith. As always.

I know things could be worse, I am truly blessed.

Speaking of blessed….. how about we talk about me for a minute?  Emotionally I am fantastic. Besides missing my son, and worrying about him. I am great. I also realize that autism or not, we all worry about our kids forever, mine is just a different kind of worry. I’m accepting it. I have been thriving myself. I’m almost done with school, I recently got hired as a preschool teacher and my goals have FINALLY been determined. I am opening a group home. I’m seriously excited for the next chapter. I’m dating…..nothing serious but having fun. I know in my heart a true relationship will happen when it’s supposed to. I do want a real loving relationship, but for whatever reason…. I’m meant to be alone for now. I’ve been flying solo my whole life minus the short lived marriage I had. Beyond that I’ve truly only had one other relationship…. But we were young. I still feel like that was a marriage too. Lol God bless both of these men for showing me real love. I know it exists. I know I will find it again or at least that’s what I tell myself. In the meantime, I am having fun with my friends and family and being quite selfish. I don’t care. I deserve it and I am enjoying doing whatever I want when I want. I’m looking forward to working on Autism on the Seas in April. I’ll be going on a cruise working with children with autism. I’m working with little ones in the school setting. I’m trying to give my son an appropriate setting and future for him to thrive, and I’m overall the happiest I’ve been in a VERY long time. Thank you all for helping me in my journey. It’s not over, but I’m seeing the light at the end of the long struggle. I can’t believe where we are now. I couldn’t have done it without you. I love you and I thank you. I’ll keep you posted when I find a placement for my boogie boo…. Until then….. the InSain Asylum is actually….. sane.

Who would of thunk it…. Xoxo

PEACE LOVE HEALTH AND HAPPINESS!

Lisa and Preston

 

Everybody hurts……..

Today marks exactly 2 years that Preston has been into treatment. He had his 13th birthday at home & it was so emotional, knowing he would be leaving very soon.  The thought of that birthday brings me to tears…. it was awful.

Preston is now 15 and he was placed into a facility for autism in Kalamazoo. After a year, he was placed into another facility because his behaviors had dramatically decreased and he was being abused by other clients. It was time to go. Now he is in a facility in Grand Rapids that is amazing. He has made such huge strides….He is able to go on community outings as often as possible. At least 2 a week. Prior to being placed in GR, he had never left the other facility for A WHOLE YEAR!!!!! (except for medical appointments). His aggression is almost minimal, his outbursts, rage, and meltdowns are rare. He no longer has “destruction of property” reports, fecal smearing is almost non existent, and his PICA episodes are also almost non existent.

What does that mean? Well for starters it means I was able to take him on vacation for the first time in about 5 years. I was able to have an overnight visit for the first time in two years. I was nervous, excited, and scared. Turns out I had ZERO worries. He LOVED going on vacation. I rented a little cabin at a campground and it had a hot tub that he pretty much stayed in the whole time. The child loves water. He ate whatever we did, in the past I would have to have a menu just for him. It was magical. It was like a miracle. I cried both nights once he was tucked in. I cried because it felt good. For the first time in my son’s life, I felt like a “real” mom. I wasn’t his dr, therapist, teacher, or any type of specialist. I was his mom. We ate breakfast, lunch, and dinner together for the first time in his life. We loved and loved and gave more love. I received affection from him like I had never had before. It was if he were saying to me, “mom I love you and thank you for bringing me here”.

The wonderful trip was truly a blessing. I was able to pay for the trip with funds from his trust fund that were raised by the fundraiser in our honor. So for those of you who helped to do that, contributed, worked, volunteered, donated, etc. Thank you. Thank you for allowing us to have LITERALLY, the best days of my life. Two whole days of bliss and love. I cherished snuggling with my peanut. Touching him, kissing him, smelling him….you get the point, right? I mean just showering him and putting clean pajamas on him and tucking him in with a smile on his face and knowing I could see him the second I woke up was magical… and sad.

It was sad because I didn’t want it to end. However, I knew it was going to. It has been a month since our excursion. Since then P has, for the first time in his life expressed that he misses/wants me. The facility has called and said that he would cry and out of nowhere be sad and sobbing real tears. he would grab his PECS book and point to the picture of me. He would sign “want mom”…………

                                                                                                              GUT WRENCHING

So where do I go from there? I don’t know. the next time I see him I explain why he isn’t home. How do I do that? “I’m sorry son, but because of your brain disorder, you tend to beat the shit out of me & I’m scared of you. Even though you were a good boy when we went on vacation… I’m still scared of you”….. I mean really how would I say this? I tell him I love him but he can’t come home because he is growing up and he needs to learn do be independant. i tell him everyone grows up and moves away from their mom. I tell him I’m sorry but I will be there for him until I can’t anymore because one day i will die and I won’t be there. Drastic, yes…. but the truth. Preston likes the truth and he is a very literal person. So I just state the truth with as much love as I can as my lip quivers and my eyes swell with tears that I fight off with all I can muster, yet they come and they fall down my cheeks. I tell him I cry because i miss him too, but we will both be okay. It’s a very “F”ed up situation. I miss my son, I miss being his caregiver, therapist, dr, specialist, teacher, etc. I know he is thriving and I am EXTREMELY grateful for our current situation. I tell myself all the time that everyone goes through this. Kids leave for college, boarding school, to get married, etc. It’s just a different kind of leaving the nest. One that i am still struggling to accept. Tough love is no joke. I am doing the best that I can in a very “different scenario”. I am so proud of my guy….. He is the reason I am still alive and doing my best to have a “different” type of happy ending.

 

My next step for Preston is to check out a “step down program”. Which means, a place that isn’t as restrictive of an environment. A house in a regular residential neighborhood with real windows, doors, yard, bathroom, etc. He will have 24/7 staffing as he does now. I am hoping that I choose; and mostly find a place to meet his needs. Once again I am scared and nervous. If this works out… IF…. then we will have had total success and he will either

A- come home

or

B- go to a group home

I’m shooting for option B, not because it’s what I want, but because it is what he needs. He is 15 and we have already ripped that band aid off a few times…. we got over the “big hill” already, why do it again? He may go within the next 6 months or so and then he will be 16, give it a year in the next facility and he will be almost 17. Legally he can be in a group home around 17 1/2 years of age. So why put both of us through the emotional trauma again?

So that is my plan. It’s our plan…. for his needs and for his well being. I suppose for ours. I mean its no secret how clinically depressed & suicidal I was… TY Dr. Phil… 😉 So I suppose it is okay to say i can’t handle him anymore and I am doing this for both of us. I need to know it doesn’t make me weak or a bad mom. My heart breaks for so many people that are/were in our same scenario. Many do not have our “pending happy but different ending”. I have friends that are struggling as I type. They are fighting the fight

every

single

day.

They hurt, struggle cry, and feel alone. I can only pray and talk to them. I can let them know that there is a way. It’s not easy, but it’s an option and alternative to the latter…. Knowing this, I need to remember how grateful & blessed I am to have had so many things…. the help, the placement, the new lease on life, support, etc. To those of you that read this and struggle with extreme and severe autism, PLEASE keep fighting the fight and don’t give up. You are all warriors and eventually you CAN have a life again outside of your personal prison. It is possible to be happy again and allow your child to be in the care of others. It isn’t easy, but it’s an option. You just need to keep fighting to find it!

So here we go onto the next chapter of our “different” journey. Thank you for listening and supporting as always.

I need to carry on and keep carrying on. Day by day…. 🙂 I am grateful and thankful for life, and I am still in pursuit of Happiness, health, and safety. I’m getting close…..for both of us 🙂

Preston and I summer 2014 @ treatment facility