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.

 

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

NOW:         

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