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!!!IMG_2312

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

Money

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.

positive

 

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I like checking in like Joe Schmo

On July 29th 2013, my world changed, it possibly began…….again. Preston my son with severe autism was placed into a residential treatment facility for children with severe and aggressive autism. I was relieved, scared, and emotionally and physically depleted. Autism had drained my soul to the darkest of places. I felt alone, empty, numb, and quite honestly, I was over our life that had slowly crept up into the region of Hell.

Fast forward to March 11th 2015— 20 months and 10 days……

I just got back from a vacation. A vacation mostly free from worries on whether or not my son was okay with my mom and his grandparents. I have NEVER gone away for a weekend without getting utterly drunk and bawling while sobbing and trying my best to explain to whoever would listen about my horrible life. The despair, the challenges, the negative prospects of the future. The incoherent babblings of my feelings of doom. Yet i went away for FIVE WHOLE DAYS and I didn’t cry, not once. I got teary eyed when I noticed a special needs girl in the ocean. She fell and the family laughed and so did she. At that very moment I wished I had the capacity to have my son with me, but I didn’t cry. I prayed. I prayed that the family had a wonderful day and enjoyed the time they were having. I prayed for the girl to have a safe and healthy life, for her to enjoy whatever it was that made her happy and that the family had the least amount of stress possible. I prayed that at that moment my son was happy, enjoying whatever it was that makes him happy. I prayed for my guilt to please go away for enjoying such a wonderful trip. I prayed for all of my “extreme friends” who still struggle daily, for a multitude of reasons with their severely affected children. I prayed for Kelli, and her family and that they are adjusting okay to the life that they have had to accept.  I asked God to help me realise and accept that I deserved  the beautiful vacation. I guess it worked because I enjoyed the sun, the family,and the friends that I was surrounded by.

It is hard at times to recall how awful my life was. Just yesterday I was stopped by the same train tracks that I had thought so many times I wanted to run Preston and I into. It seems like a lifetime ago, and yet some days it seems like yesterday.

I miss my son. I have cried most of today with a plethora of mixed emotions. They run deep and they are hard to get a grip on at times. Today is one of those days. Maybe its the sun. The first glimmer of spring were good days for us. I miss having the bike ready when Preston would get off the bus. I miss his smell, his laugh, his sound. I miss Chad too, but it’s weird how I have accepted his passing and feel mostly at peace with it. However, with Preston it is so different. I still, however awful as this may sound, feel that if he had passed away it would be easier. The constant worrying over him is tough. I will never fully accept my son’s condition. I will die with a broken heart and a fractured soul. I do pray that God takes Preston before me. I can’t fathom his living without me to do my best to protect him. These are the thoughts that make the tears flow and my nights into horrific recurring nightmares that no therapist could ever fix. No amount of drugs, no amount of wine will ever take these haunting thoughts that plague my racing mind away. They are there. Some days I can tuck them away some days I can’t. I’ve been struggling lately and I don’t know why. I think it is the change of seasons. As I stated he loves the warm weather.

So Here I am posting my happy photos on social media. I no longer complain about the exhaustion, fatigue, and constant struggles associated with living with a child who is impaired and beats the shit out of you. The pictures aren’t fake. I am content, safe, happy, and mostly healthy. I just turned 40 and for the first time in as long as I can recall, I’m the most stable i’ve ever been, so is Preston. I have a bf who treats me well. He has two children that I am falling in love with as much as I am with him. I am blessed beyond words with the friends and family and supporters that I have. However, underneath the smiles, there lies a former abused mom who misses her son so bad that it literally kills her. Every single day. I want him in my daily life.

I just got off the phone from the supervisor of his home and care. Here is the skinny:

                                                December                    January                       February

Physical Aggression               43%                             11%                                  6%

Property Destruction               45%                             4%                                    6%

PICA                                        17%                               6%                                    6%

Disrobing                                 20%                              23%                                  0%

Fecal Smearing                      4%                                  4%                                   0%

These are the percentages of incidences that he has had since he was placed at the new facility in November. Not only does he go on community outings, but he is no longer abused by other clients. He earns an allowance and his favorite place to shop is at 5 below. His favorite outings are anything to do with water activities and when he is at his “home”, he enjoys getting tickled by staff and making them act like various animals. He still enjoys making me act like a monkey and a chicken, particularly in public. I suppose some things will never change… 😉 I have been told that as of right now, his placement is the perfect environment for him. He should not be placed in any more of a least restrictive environment than where he is presently. He should also not be confined to a more restrictive environment. Preston is thriving in every aspect of his life, from what can be measured. Of course only God knows his psychological and emotional state from all of the trauma, but from what I can tell as his momma…. my “baby” is doing pretty damn good. I couldn’t be more proud of my booty boy.

I do not know when or if he will ever be able to come home. I try my best to bury those questions and just live day to day and enjoy the freedom that I have. I enjoy the freedom from being abused by Preston, and the freedom of the stress and trauma. I like posting my food on social media and posting my check in’s like “Joe Schmo”. It’s so cool that a friend can call and say hey wanna meet for dinner, and I hesitate (although not as much as i did at first) and I think, “hmmmm do i feel like going to dinner”? It is still a tad crazy to me that i have the option to say yes or no. It’s InSain that I am no longer a prisoner of autism. It feels good. So as many times as I cry myself to sleep at night…..I just continue to carry on. I pray and thank God for leading me into the life that he has given me. I am moving on to the next phase of my life. I am almost done with school and can finally decide what I will be when I grow up, besides my son’s punching bag, rest area, and monkey robot chicken impersonating mom.

I always say I couldn’t have done this without you. It is true. Whether we are strangers, friends, frenemies, family, acquaintances, or neighbors….I needed you. For one reason or another, and I thank you. My son thanks you. We are stable. happy. healthy. Life

                                        is

                                        good.

God bless you all and thank you for helping me in this journey. All my love and sincerest blessings to you and yours. No matter the struggles and challenges you face. We all have them. You and only YOU can work really hard to get to where you need to be. Do what makes you happy. You deserve it…… we all do. 🙂

Sincerely,

 Lisa and Preston InSain but thriving….:)

THEN

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NOW:         Preston and I.... Blue shirts P Close up

Dr. Phil

       I apologize that I cannot answer everyone individually or respond to the messages of love, support, advice, etc. I want you all to know that I have read them all….(I think) and it means the world to me. I figured that I would try to generalize on my blog in order to answer and respond to questions comments etc. I will do my very best.. so grab a coffee.. this could take a minute.. 😉
First of all let’s start from the beginning. My son Preston is currently receiving treatment after a year of trying to get help. He was admitted into the Great Lakes Facility for Autism which is 2 1/2 hours away from me. Preston has been there for over a year. How is he doing? Well for starters, I love my child and I post pictures of him on my facebook. Those pictures depict a happy smiling boy who is thriving. There is a lot of truth to that. Preston IS thriving for a multitude of reasons, those being:
1- environmental factors~~ Meaning there is no additional stimuli like trips to the grocery store, windows that he can break, access to appliances, dishes, television, computer, etc. No pictures. No stimuli. Period. Preston lives in a room with very small windows at the very top of the ceiling that he is unable to reach. If he does find some houdini”ish” way to reach them they are special windows that are “unbreakable”.
2- Consistency~~ 24/7 consistency. Something that I am unable to provide to him for a multitude of reasons. I’m not talking general consistency and routines that a child needs like bedtime is at 8:00, do your homework, brush your teeth, etc. I am talking about minute by minute consistency and structure. Right down to how much toothpaste is used on his toothbrush, the type of toothbrush, the brand of toothbrush, the brand of toothpaste, the temperature of the water, how we brush his teeth (assisted because he is unable to implement personal hygiene tasks independently) how long we brush his teeth, etc. and that’s JUST brushing teeth. Now go through that scenario with washing hair, body, getting dressed, dinner, getting ready for school, for bed, etc. Seeing the pictue now? Overwhelming thinking about it? Try doing it.
EVERY YEAR
EVERY MONTH
EVERY WEEK
EVERY DAY
EVERY HOUR
EVERY MINUTE
EVERY SECOND
FOR
THE
REST
OF
YOUR
LIFE!!!
I’m exaggerating, right? Yes. I attempted and as Kelli would put it, I epically failed. I DID not and was not capable of doing such routines. Nor is the treatment facility because…..ITS NOT HUMANLY possible!!!!! However, with breaks, and different staff, and constant hands on care, they are doing better than I could do as a single widowed parent who tried to maintain friendships, her sanity, a “social life”, school, work, and , teacher, doctor, friend, Speech therapist, occupational therapist, psychologist, and lastly mother to Preston. It was a bit overwhelming and I “failed”. As ANYONE WOULD!!!!!
SO now that we have that out of the way…. Yes, Preston is “thriving”, meaning he is happy as far as I know for the most part. (remember he is non verbal) I can only take the staff’s word on how he is doing. There are no cameras. I see the bitemarks, bruises, scratches, and scars on his body. It really sucks and it’s hard to bare. As a parent, I can say he is mostly safe and obviously, I am too. The biggest accomplishments of Preston being at the facility is that he is safe and so am I. PERIOD. He is not learning to communicate any more than what I have taught him at home. I am still the only one that understands him, it’s as if we have a secret language to outsiders. The treatment facility is not some magical place where miracles are happening with severely autistic children. In fact the therapist there that works with Preston has stressed that if the plan is not followed to a “T” it significantly affects Preston’s behaviors. So my question that I constantly ask myself is: How do we rigidly follow his behavior plan and execute it like a trained and experienced brain surgeon with precise hands and skill? Answer: We don’t know. It remains a puzzling paradox. Probably always will.
You see that is what is frustrating and overwhelming. We must learn to accept what it is. We must accept that our children will grow into adults who will eventually live in a group home without us to advocate for them. They will probably more than likely be medicated and their bodies will ultimately start shutting down… and then well… you know. (thinking one flew over the cuckoo’s nest? Me too… :-/ )Now I am not saying ALL children, but children like Preston. There are many.
Which brings me to this: yes I was on Dr.Phil show. I was there to express the best I could in 20 minutes or so how a parent could reach their breaking point, how we can lose hope. I am not a hero. The truth is, my story is not an original one, it’s not just our story, it’s a whole plethora of people’s stories. People I love and people that share these common traumas and concerns on a daily basis. I am not proud of what Kelli did. However, I am proud of her because she decided that she did not want to put her children through any more struggles and now she pleaded guilty and will take whatever punishment is given to her. I wonder, do people really think that her going to prison is going to help ANYONE? I don’t. Hasn’t she suffered enough? Haven’t we all? If you all only knew the stories I read in a group I belong to of those that struggle daily. It’s heart wrenching. I feel guilt that Preston is in a facility and I am safe as I read how my friends are not. It’s awful. I spilled my innermost shameful experience on national television in hopes that others would be brave enough to do the same. To let others know that in this society, there are so many that need help. Help that is not always available. I think of one woman who recently came out of the “closet”, so to speak. She posted pictures on her social page of her injuries. I’m proud of her, and I’m proud that I was a person that influenced her to do so. I want her family and friends to see just how severe and dangerous her life is. I hope and pray every single day and night that my friends get help. I pray for lenience in Kelli’s case.
In closing, the show was hard. the biggest question I am being asked is what did “I get” or Preston “get” from being on the show. The physical answer: A coffee mug and a hard cover book and an online book that was printed for me with an autograph. I did not get paid in any way shape or form. Not that I expected to. Obviously, the show was about Kelli and helping Issy. We were not offered therapy, or additional treatment. Am I disappointed? Of course a little, I will not lie. However, in the big picture… I am grateful for a wonderful family, God, friends, and my attorney.

Christenson & Fiederlein P.C. @ http://www.cflegal.net/ Although I will take this opportunity to say that even though I am a badass, sometimes you need assistance from the legal aspect to get your child help, this attorney is pretty damn good…and continues to help my son remain in treatment and receive services that he is entitled to… feel free to seek their services for your child. Mention my name and I am pretty sure they may give me a coffee mug to add to my collection, you’re welcome;)

http://www.cflegal.net/contact-us/employee-directory/10-the-people/4-chris-christenson

     I am grateful for the ongoing support that has been there for many years. Multiple fundraisers and prayers. I am EXTREMELY thankful that my son is in a facility. I mourn for him. I miss him. But we are safe for the most part. Which is the #1 reason I needed him to be in a facility. So I cannot dismiss that we have met the number one goal… “SAFETY”. We are still working on happiness and health. Aren’t we all? My story is not original. It’s OUR story. If you are in a similar situation…. suicide is not the answer. You and your child deserve to make the best go you can. It’s not easy, but life isn’t easy. YOU and only you have the capacity to change your mindset and turn a horrible and depressing life into one that you focus on the positives. Even the smallest bit. Today, I’m thankful for safety. I’m thankful for you. I’m thankful my son is here and so am I. I would not be where I am if it weren’t for the help and support from everyone that fought along with us. The letters to Dr. Phil, the complaints filed to the state, the support, the fundraisers, etc. Let’s not forget Kelli and her friends. They played a huge role in seeking services and literally saving my life and my son’s life. Forever grateful….forever indebted. I love you all so much!
Lisa and Preston of the InSain Asylum

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HOW CAN YOU HELP???

I am desperately trying to get my son treatment!!!                                                           Image

Please help me …. again……:(

Without you I cannot do this!

I’m attempting help from Dr. Phil again…………………

Please email his show at this link:

http://www.drphil.com/plugger/respond/?plugID=9164

My story is quite simple and you can copy and paste this into the comment box:

My friend is desperate to get help for her autistic son, she is being told that in order to get help she will need to give up her parental rights, this isn’t fair. She is a widowed mom to her son who is almost 14 and has extreme and aggressive behaviors that is preventing her to care for him any longer. She has plenty of documentation from her blog in addition to pictures she can provide to tell her story. Please help her, she has contacted her state senators, governor, and other organizations and seems to be getting nowhere. PLEASE help this family Doctor Phil!

 

Its that simple…..will you email them?

Or send a letter… to:

Dr. Phil show
5482 Wilshire Boulevard #1902
Los Angeles, CA 90036

T H A N K Y O U S O M U C H F O R Y O U R H E L P!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Lisa and Preston Sain

Image

 

Please share so others can help us too…….

 

 

Pins and Needles… and Autism

It has been so long since I have blogged. There are several reasons but the number one reason being that it is hard. It’s hard to convey and express such strong emotions that I feel in regards to this life that my son and I have. I could never in a gazillion years explain the pain and sadness that comes with raising a child with severe autism. There are families that can relate and I am EXTREMELY happy and blessed to be a prat of a group on facebook that allows me to speak so candidly and they understand because they go through the same challenges that we do. I wish I had this outlet years ago but better late than never. 🙂 So to those that read this that are in the group… I love you and i thank you for the support…:) I am sorry that we know of one another through these circumstances but at least knowing we aren’t alone and we are fighting these battles together are helpful.

I remember when Preston was first diagnosed. It was terrifying. I would wait for P to go to bed at night so that I could research autism. I spent many sleepless nights looking and searching for just one sentence that would bring me some sort of hope that there was a cure for autism. I spent every dollar I had on therapies and treatments. Nothing worked. As he got older, harder, and more aggressive I became more and more depressed, tired, isolated from the world around me. I started to hide our lives. I pretended that everything was okay. I had a smile on my face and did the best i could to survive, everyday growing harder and harder. My closest friends and family had no idea the turmoil I was living in. Eventually, I wrote my first blog….the cat was out of the bag. I was out of the closet, so to speak. Extremely hard and a huge cry for help, and i got it. I had the support I needed to do what i knew I needed to do, which was get help. Whatever that meant at the time I wasn’t sure. I started my process of getting Preston into a temporary treatment facility. It took a year but i finally succeeded.

Preston has been in treatment for 10 months and 8 days today. It’s so hard.. ..”hard” and understatement. It’s terrible. He didn’t go to summer camp, he didn’t go to college, he didn’t move in with his friends, he didn’t join the military, he was put into a facility with other severe children and has been put through the ringer. He has been physically abused and at times confused and well I honestly don’t know what else because he cant tell me. The good news though… is that he appears to be doing better. He sleeps through the night, he eats a variety of foods, and he is thriving on the consistent schedule that the center provides. I am grateful and thankful for this opportunity. I thank God every day.I pray every day multiple times a day asking God to watch out for my baby. My faith is all I have, but I’ve learned its all I need.

Preston’s treatment has reached a point that it is time to start his transitional plan. With many meetings and discussions based upon data from the facility, his behaviors, my input and that of CMH it has been determined that there are two options for his “next step”. He is either coming home or going to another facility about 45 minutes from me. If he comes home there will need to be the following major things that will have to happen for him to come home, these things include:

Reinforcing the walls so he cannot break through the drywall and eat it.

Finding heavy duty furniture that he cannot pick up and throw & bolted to the floor.

Finding a way to make our vehicle “preston Proof” so he cannot break the glass nor reach me when we are driving. He tends to choke me, punch me, throw things at me, and move my shifter into another gear, and grab my steering wheel.

We need to remove all glass from the house, including the windows.

We need a high tech security system

We need locks on all the cabinets and rooms in teh house ( so every time i go from room to room I will carry keys around my neck or wrist and open the doors.

He needs a bathroom that is waterproofed so that he can shower throughout the day and not rot the floors from the splashing.

We will have to find staff that can be here 24 hours a day 7 days a week. LOL LOL LOL LOL LOL LOL LOL LOL

We need a certified BCBA. This is a person that is trained in making a personalized behavioral plan for Preston and supposedly trains the 24 hour staffing to implement tha plan. They will check in weekly to make sure the plan is being implemented. The BIG problem with this is we do not have a certified BCBA in Genesee county. They will have to hire someone from out of county to do this. $$$$$

In addition to this problem, there are only two companies that CMH uses to hire staffing for families. One of the agencies has said that they will not provide services to us. Yes, we were kicked out of a company because they know they cannot find staffing for Preston. They have stated he is too hard and even if we found someone, the pay rate would be too high. (the “workers, aides direct care staffing, or whatever you want to call them” get paid $7.50- $9.00 and hour most of them are $8.00. I don’t know anyone in their right mind that would wipe a  grown teenagers poopy butt, put their life at risk, and get hit, bitten, and deal with such intense situations on a daily basis. However, as you are reading this and know someone please feel free to contact me… I may have a job for them!!

 So those are SOME things that must happen for Preston to come home. Here is what need to happen for him to go to the new place:

They need to continue the treatment plan he has at the current facility and provide a BCBA to oversee his program and treatment.

That’s it. 🙂

PROBLEM: They do not have a BCBA and they do not do this type of therapy.

UUUMMMMMM Okay.. now what?

I have no flipping idea. I put in my official request for the new facility 14 days ago today. They have 14 days to respond to the initial request for placing him in the new facility. I am on pins and needles. I am shaking, sweating, trying to go about my day and freaking out ever time the phone rings. Maybe the notice will come in the mail. I don’t know.

SO that’s the update on Preston. I want him moved to the new place. Mostly because it seems to fit his needs more, they have a pool that they go to on site at least twice daily but usually more. He can have a tv, his kindle,and a gym with a sensory swing. It is big enough for him to take his bike too.. 🙂 They have a playscape and a sandbox that he is free to go and play when ever he wants to ( during his “freetime” of course) They train in areas that are more realistic like doing his laundry, doing dishes, taking out the trash. Basically daily living skills that he needs. I’m sure its not perfect but compared to where he is now, he will feel like he went to a heavenly resort. SO please pray that Preston gets placed at the center in Caro. The most important thing with him going there is that when he starts school, one of his workers from his home will go to school with him. He will finally have a one on one aide!!!! Something he has needed for years! 🙂 Then the most EXCITING thing is that i can pick him up and go into the community, maybe go to eat, go to the beach, go to a park, go shopping, etc. They will send staff with us if I need the support. He can also come home for the day or weekend!!!!!! OH EMM GEE!!!!! To have my son come home now and then is a dream come true!!!! They have a ton of options.. staff can transport back and forth, they can stay or leave depending on my need for supports, or I can pick him up bring him home for a while and take him back if he needs to. This is the most important part to my selfish self. I can’t help it. I miss my son. Its ridiculous that i miss certain things like bike rides at 3:00 am, washing his hair, clipping his nails. I miss his irritating happy noises, I miss the joy I see while he plays in water non stop. I miss baby einstein constantly playing and me making animal noises and crawling on the floor to make him happy. I don’t know how I can miss these things but I do. It’s how I had to parent, and although not ideal nor typical, it was OUR way. I miss parenting him.

Since Preston has been gone my life has changed tremendously. I actually feel human. I eat, drink, sleep. Not only do i do these things whenever I want, but I do them in a clean house and bed. A BED!!!! A real bed with clean sheets every night… lots of pillows and candles going. I often sit in silence. Something I never had the opportunity to do before. Yesterday was tough. I mowed the yard then I sat for a break. I actually sat in my swing in the front yard and drank my tea and realized that i have had that swing for many years and even though the cushion is gone I sat there for the first time in my front yard. I have lived here for 13 years and never had that opportunity. I even have a boyfriend now. It’s wonderful… to have affection and someone that cares and to keep me company. It’s a real relationship and it feels great but a part of me will always be missing. He has two children a boy and a girl who are 11 and 15. It’s tough to spend time with them and I have guilt and choke back tears when i am with them because I feel guilty for not being with my own child. All normal feelings and I just have to push through them. This will never change. I have to put my big girl panties on and suck it up.

Life is good….a clean house, a boyfriend, and my health. I even started school again. I’m in the “focus mode”….trying to meet my goals. Trying to do what is best for my son and for myself. It’s not easy something we can all relate to. Life isn’t easy and if i didn’t have autism and Preston I wouldn’t be so grateful for what I have. If I had not have lost my husband i would not be as far as I am in accepting Preston’s autism and doing the inevitable, placing him into residential care. I am happy that I am making these moves for him because eventually it would happen. It feels good knowing I got through a MAJOR “HUMP” and milestone that many families I know will eventually face. I’m proud to be so strong in doing what is best for my son.

So with that being said… I hope you understand where we are at. Please pray for Preston to get whatever it is that he needs. I’m not exactly 100% sure if that is coming home or going to the facility in Caro, I am leaving that one to God….so please pray. I will continue to sit here on pins and needles waiting for the call. Or the mail….the mail comes in two hours. Not that i’m keeping track of time 😉

Thank you for supporting me. I couldn’t have done this without you. I almost didn’t make it. We almost didnt make it. I am glad for my special friendship with Kelli, it opened my eyes and I cannot wait to continue fighting for families, finishing school and helping the families that so desperately need support!!!! My friends, my family, my strangers that read and support….. God bless you… and thank you from the bottom of my broken still in repaired but still beating heart!

Ill keep you posted…..:)

Sincerely,

The InSain Asylum xoxo

 

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Deep Breaths………Big Prayers…..

I am so lucky to have the support of so many people and I want to start off by saying thank you. Thanks for listening, reading, caring, sharing, for sympathizing with our situation, and for those who do/can empathize. I am sorry I have not blogged in a while. It’s been a debate that swirls in my head almost daily. It’s a great outlet and I feel that I’ve “sucked many of you” into our lives for lack of better words. So bare with me. My thoughts are scattered. Stress tends to kick my A.D.D. into high gear. Despite the advice of several professionals I am going to ignore them and I am blogging.

First I need to talk about my friend Kelli Stapleton I support her. Period. I will not speak about anything I know or don’t know. I read the articles now and then and I don’t know anymore than anyone else. I understand that the news is not always the best way to get the facts, but it’s all we have. In my opinion, I know in my heart where my dear friend was, I know because i’ve been there. More than once.  I will leave it at that. If you would like to help her and her family there are two sites that you may make contributions to. One is through their church to continue to help with their autistic daughter’s treatment. That site is:

                                                       http://elberta-alert.org/please-help-issy-stapleton/

There is also a way to help Kelli and raise money for her legal defense fees. That site is:

                                                  http://www.youcaring.com/other/friends-of-kelli-stapleton/90021

Both sites are legit and all funds donated will go towards the causes that they are meant for. If you can spare an extra dollar or million, any and all is deeply appreciated. Thank you. 🙂

So On to my beautiful son Preston. How is he? Where are we at? Whats going on? To be quite blunt….it’s been stressful. Preston has been through the ringer. Hospital visits, Er visits, Doctor visits, getting physically harmed, etc. Emotionally, it’s hard to tell where he is at. He doesn’t talk. It’s like a newborn. You just go by what you see. The nonverbal cues and physical attributes of his body and face. It’s what I go by. The staff lets me know when something “bad” happens. However, I don’t get daily calls from them. We tried facetiming but it only brought stress for both P and I, so we stopped. Emotionally Im a complete wreck. I knew this would be hard, but not this hard. It’s beyond words gut wrenching and I live life almost daily in constant turmoil. Worried, anxious, sad, and angry. I can only pray i eventually have peace someday. Maybe my mom was right after all these years, that it is harder on me than him. I hope she’s right, but mom’s are always right, correct? 😉 I’m going to place a bet on my mom…:)

So the good news.. ready? PRESTON IS THRIVING! Huh? What willard? Yep.. thriving, doing well, dramatic decreases in behaviors. So does that mean I wasn’t strict enough? Didn’t follow behavior plans correctly? I didn’t get “professional advise” “professional” help? NO, NO it does not. I was strict. I spanked Preston, I used timeouts, I used ABA, I tried COUNTLESS methods suggested by professionals. These professionals do not live with autism 24/7. I can handle 5 autistic kids for 4-8 hours a day too. I can be consistent, and stick to plans. Preston doesn’t trust a stranger. If they tell him to do something he may push their buttons to see if they “cave”. Eventually he realizes that they wont. He behaves and doesn’t ALWAYS use aggression to get what he wants, especially when the rules are black and white. With me its a whole different planet. He trusts me. He will hit me, bite me, destroy our home, and literally put me in …ugh tough to admit, but in life threatening situations. He knows I’ll give in out of exhaustion, emotional ties, and at the end of the day no matter what he does to me, I’m going to kiss him love him and never bite him back. That’s called abuse. I won’t lie about my next shameful statements. I have hit P, I have bit him back when he was younger, I have yelled at him and threatened him out of pure frustration and exhaustion. Caregivers have done the same. Why is he behaving at the treatment facility?

Because of several components. He doesn’t “trust” them the way he trusts me. They are consistent. They have a safe environment. Non breakable furniture, walls, tv stations etc. No windows that are accessible. They are in lockdown. He has minimal space that he is allowed. He cannot get a drink of water freely. EVERYTHING is locked. I do not have the luxury to transform my home into an autism friendly environment and make the modifications. What i do know is that he is thriving in this type of environment.  That’s the great news.

Which brings me to our next step. Making the choice to come home or TRY to get permanent placement in a residential facility. I am going to admit something that is really hard to admit.

I cannot do it anymore. period. 

I have dedicated my life to making sure health forms are filed, he is up to date on anything and everything, making sure he gets proper education, staffing, plans, therapy etc. I’m done. It wore me down. It didn’t work. I was suicidal, depressed, and suffer from PTSD. I’m broke, in every way you can imagine. I’m damaged. If I’m not okay, he won’t be okay. I’m his Mom and his Dad. We are tired. I’m going to try and put Preston in a residential facility. Let me explain something to you before I get into that. Even if Preston came home, we DO NOT HAVE staff in our area that can help with Preston. We tried. Yes, his behaviors are better, but i have to train individuals who would get paid crap for money. It’s a tough job and $8 an hour doesnt cut it. So even IF I WERE emotionally and physically up for the challenge, I am alone. I would have to fight for the maximum services we would need to get by and that’s an understatement. Why not move to a place where services are better? Well, good question… but I’m not guaranteed anything and at the end of the day, don’t I deserve to finish my degree, work, and try and rebuild my life? I’ve been alone for 12 years. I kind of miss having a man hold me, support me in choices through good and bad. I want to work and follow my dreams. I’m not getting any younger, but there is still time, I hope. However, let’s dance with the idea of me moving “somewhere” (in this perfect land of autism filled professionals that know what they are doing and help) and he gets better services than where we live. What happens of I die in a car accident? Not very likely right? Well it happens. It’s a very real reality to me. I actually think i’ll die of a heart attack. Anyways….if i die what happens to Preston then? I just had my tubes tied, there will be no other siblings to care for him, no nieces no nephews… no aunts or uncles that can or SHOULD have that burden. Then what happens? Aren’t I smart to secure his future the best way that I can now? Establish a secure and stable environment for him now? The answer is yes. In my heart and my gut and as Oprah says.. “aha moment”, yes.

So I am in the process of looking at the TWO homes in our state that will take Preston. Problem:

State of Michigan will only “accept” his medicaid if he is a client of Department of Human Services or DHS. How does that happen? He is a foster child. My choices to get medicaid to pay are simple:

1- I refuse to pick him up from where he is now and abandon him which is a federal offense.

2- I give up parental rights. Which means I have no say in his care, or where he is placed, or make sure he is ok and even worse than that on a personal level, I never get to see him again.

How do you like those apples? Hold on, I can do private pay and the cheapest of the TWO facilities that I can POSSIBLY choose from  will only cost me $126,608 per year. UUUMMMM Unless I become President, I’m not sure I can actually afford that. (Lisa inSain for president please) 😉

I expect to pay for my child’s care, its like sending your typical child to college. One difference, you have time to do this, there are scholarships, etc. I didn’t ask for this. I know others aren’t responsible for my child either, but it’s not fair, and that’s a fair statement.

So for now, i’m remodeling my home so I can sell it and buy a cheaper home.  I will live in a campground thanks to a good friend until I get the house done. I’m not sure what the future holds, I’m back to the books. researching laws, calling on God, the president, the financially fat owners of these homes…..begging pleading for them to help save us. He can’t come home to me.  I think we all know why. Don’t make me say it.

Keep us in your prayers. I love you all. Something has to change, I’m working on it.

Lisa and Preston

Clueless at the inSain Asylum

                                                                                                                  1413

Living in prison

A pretty important meeting is happening tomorrow. Mr. “X” is meeting with the “top peeps” at GHS, they are going to battle it out over medicaid codes and whether or not they are covered services. Please pray for us. In many ways I’m sure the GHS “peeps” will continue to say it is not a covered service but its a little bit of hope and its all I have left in me. Literally, I’m fading, I’m withering, my health is suffering, my mind is going numb into that whole post traumatic stress disorder “place”, and I am dying a slow death. I am no longer myself. I have moments that I do my best to pretend I am me, but I’m not. Inside I want to scream, cry, lash out on everyone. I’m not the Lisa i used to know. I don’t know if I’ll ever be her again. My life is a daily battle of survival. Right now i’m sick. I have a bad allergy sinus thing going on.. or I keep telling myself that. I hope its not bronchitis or something serious. I went back to sleep today when P went to school and had a terrible reoccurring nightmare about my late husband. The dream changes here and there but mostly its the same, he fakes his death because he doesn’t want to deal with Preston or he cant deal with him. He has the perfect family as I struggle to deal with our son and the nastiness of autism. I despise the dream, almost as much as I despise autism. I wake up feeling alone, angry, hurt, and sad that I feel betrayed by my dead husband, even worse I feel like I’m truly insane.
I struggled on Sunday the inevitable Mothers day. No good morning hug from my blue eyed baby. No card, no breakfast in bed, no flowers, ….Just another day as the world celebrates moms…I say a prayer and I thank God for mine. But this year I couldn’t even verbally thank my mom. I didn’t have it in me to even get her a card. I promised her a day together in August IF Preston gets approved for a camp that he hates. I promised a day trip (in 3 months) to the casino where we could enjoy a dinner and a car ride and a hotel room that was peaceful. It’s a day that we both deserve and i’m not even sure i can make it happen. I’m a tad bit resentful and angry these days. I’m trying not to be, I really am. I’m asking God for my strength and to not lose hope. But its hard to see the light when you’re in prison. That’s what our life has become, I’m a prisoner in my own home. So is Preston. It sucks. What sucks even more is that this summer I have 4 events I’m hoping to do IF P gets to go to the camp he hates,
2- a John Mayer concert with no date.. but hey 3rd wheel is better than a night in prison right? 😉 
3- a night with my mom to the casino
4-Jimmy Buffet I have a date from Scotland 😉 
After typing this I slightly feel better and blessed, I mean some people probably don’t get to do that…so I should quit being all woe is me. 
Back to my original point, please excuse the sidetracked thoughts and pity party. lol My point is PLEASE pray, please pray that we get the answers we need tomorrow. Not just for me but for other families in this county. Preston and i are not the only prisoners. 
Here is the “recap letter i sent to Mr. “X” for the meeting of the minds tomorrow:
 
 
Hi Mr. “X”,
 On Friday may 10th Preston was supposed to go to the Fowler center for weekend respite camp. My mom & brother took him because there were problems with me taking him last time, we thought this would resolve the issues. Upon arrival he screamed, cried, & refused to get out of the car. He did not want to go so my mom brought him back home. 
   On Saturday afternoon my mom who is also my respite/cls worker took him for the night. He did okay. Not without aggitation, aggression, & destructive behaviors. however my mom knew i desperately needed the break to sleep.  I picked him up Sunday morning & when we got home he broke the mouse to the pc. We left to get another one at radio shack. He wanted to go to Salvation Army but it was closed, It is in the same plaza as radio shack. I told him it was closed but he did not get that concept. Knowing it was closed I let him walk down there himself to see the doors were locked. As he was pounding on the windows I watched from a distance as a car pulled up to drop off donations to an after hours box. I turned around and started walking towards radio shack thinking he would follow me. When I turned back around he was gone. It really made me nervous because I knew the store was closed. I thought he was taken by the car I noticed. I immediately ran down to the store when I noticed lights were on and the doors were open. As it turned out workers are there but the store is closed to the public. They thought he was in danger & opened the doors for him & called the police. When I got inside I explained he was non verbal & has autism. I asked them to tell police to still come knowing this could get ugly. I was able to coax Preston out of the store with three video tapes. He had taken his coat and shoes off and was close to stripping naked. When the police officer arrived he knew who we were. He asked me again if I managed his care alone, I explained I did through tears. He made sure Preston got buckled safely and into the car then we went home. I was afraid of the car ride home. I managed to only get a bloody lip from him. I sedated him as soon as we got home because he was being unruly. 
Today is Monday as i picked him up from school for his doctors appointment i could hear him screaming. He was on the floor crying & had three staff around him trying to control him. (Last thursday the cpi team was called in his classroom due to his outburst, it took an hour and 4 staff members to control him) At the doctors appointment, in my eyes he was “good”, the doctor asked me if I had considered putting him into a home. I just cried and didn’t have much to say to him. Preston was all over the room jumping, hitting the bed, the counter, splashing in water, not being still for one second. 
When we got home he broke our recliner, stripped several times while standing at the front door, and had aggressive behaviors towards me on and off. 
It is now 5:30 and I am waiting to give him his night meds so I can get him to sleep, praying he sleeps all night. We are sitting in a parking lot so I can type this to you. (He enjoys car rides). This is a typical few days. 
What a great Mothers Day as usual. Preston needs intensive treatment that the center can provide! It’s not permanent residency, but it’s a permanent solution! His condition is something that professionals without experience in autism cannot handle, the center can help change his behaviors and teach me and staff how to keep him under control! Thanks, Lisa S. 
 
So there it is.. a typical recap of a few days for us. Please pray. My son needs intensive therapy. I’m not sure how much longer we have….We are slowly dying. Thank you.. 🙂 
Peace, love, health, wealth, and happiness to you all….Share my blog, share the fundraiser, … share because you care…Eventually something has to give if I keep screaming.. right?