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!!! ūüôā 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! ūüôā ¬†Also sorry about the beginning of the post, I was just trying to get you here with your deviant curiosity ūüėČ 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! ūüôā

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. ūüôā 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… ūüėČ 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. ūüôā 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… ūüėČ 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. ūüôā

Sincerely,

¬†Lisa and Preston InSain but thriving….:)

THEN

20130204-210159.jpg20130217-164206.jpg20130204-210116.jpg

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

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…….

 

 

Warning A.D.D. post

My mind is all over the place…I need to write in a “systematic type” fashion because in all honesty my head is jumbled.Image

How do I verbalize what is going through my head? I suppose for starters Ill brifely taslk about the “big Meeting”. It went okay. I’m not sure what is going to happen but when “it” happens, I’ll let everyone know. In all honesty, it’s so extremely stressful that I think until things are more final and not so “wait and see what happens”, I’ll keep it to myself. What I can say is that I will NOT GIVE UP, Preston needs help and I swear…I will literally kill myself trying to get what he needs. I will bleed..I will lose sleep, I will devote whatever last breath and being of my life to help him. It’s the only choice I have right now.

On another note, I attended a conference this morning that was about behviors and keeping kids in school and how to help students receive the best education possible. ¬†( just what i want to do while I get respite..on a Saturday afternoon***SIGH**) It was a great conference… for someone else. I don’t mean to sound like a “smarty pants”, but boy oh boy.. I know my stuff. I didn’t learn much and kept to myself and just listened to parents, educators, therapists, etc talk about all kinds of issues and situations. I am so past all of that. I KNOW what is best for my son. There was a well known speaker at the conference and I asked her if she was aware of the Autism center in Portage, she did. I asked if she had visited and she said no but she needs to. She started asking me questions about it and ¬†I told her what i knew; cost, funding, the strategies used. She was intrugued and aske dme to email her this week. ūüôā Yay yet another resource. However, I had a “naysayer” listening and she overheard the conversation and inquired about my question earlier in the conference that I asked out loud. The question was in regards to the free and approriate education.. blah blah blah, anyways she was “on to me”…she said, “EXACTLY what are you trying to do with your son”? I told her in a nutshell anyways. She laughed. She laughed.. WHat She literally laughed and with a smirk and no eye contact she snidely remarked, “good luck with that”. I walked to wear she was seated and I, infuriated and redfaced, asked for her name and e-mail. She obliged and wrote it down. She said, “May I ask why you want it”? I bent to her eye level ( which wasn’t much.. Im 5’2″ in the physical sense, but of course in my head..I’m about 6’4″) I politely said, “so when I succeed, you’ll know how to get a hold of me to congratulate me and¬†apologize¬†for doubting my capabilities”. All in all the conference went ok. lol

OKAY NEXT:

Strangers and the impact that they have on me. Throughout Preston’s life I have met some really great people. Teachers, therapists, doctors, mutual “autism friends” etc that have been a really positive¬†experience. However, that isn’t always the circumstance. There are some people, friends and family included, in our lives who have really belittled me and think I “cater” to Preston’s autism. There have been moments that i have actually doubted myself and believed them.

For example: “giving in to P” in order to prevent a meltdown. Something simple.. hmm like allowing him to visit a mall to walk before therapy versus going to therapy ¬†and him melting down because he couldn’t go to the mall to walk first.

If I have done something for Preston in the past a certain way he remembers and he usually is very regimented (as autistics are) and wants to do it that way forever. I cannot take that away from him, it’s part of his disability. Why wouldn’t I do these simple things? Even if it means “interfering” with my life to some extent. If your child was a diabetic and needed insulin before the therapy would you say umm no first therapy then insulin. No, you would give them the insulin shot. It’s the same thing. My son has a disability. He doesn’t not mean to be selfish ¬†but its part of the disorder. He does not understand emotion or needs of others. Only himself. So think of it how you want, maybe I “cater” in someone’s eyes but I know in my heart I only do what is best for him. ALWAYS. Sure i screw up now and then, don’t we all? In every relationship we have? Don’t think my son is a brat. Don’t throw your¬†judgments¬†at me with parenting. I’m the one who has educated myself, not you.

Now lets talk about the positive people in our life. You, you that are reading this, yes YOU! Thank you. Thank you for your support. To a total stranger that read my blog and decided to raise funds for us. Thank you. To those that are contributing to the fundraiser, thank you.

I met with a couple of ¬†girlfriends Friday night for a few drinks. We briefly talked about the fundraising efforts of the “stranger” ( and the people/local salon involved), I say that loosely because we have already met and I already consider her a friend and hero. I cried. i didn’t just tear up.. I’m talking full blown cry.. tears streaming nonstop down my face, snot coming out of my nose cry. The waitress brought beer napkins and tear napkins.. 3 times. lol I cried because I feel so grateful. I feel like our time is here. It’s time to have a life again. Its time to get the help for my son. I realize that I need the help of others in order for my son to thrive. Its hard to accept it, but I’m going to. I just purged my emotions to my friends. My fears, my¬†overwhelming¬†feelings of gratitude, my feelings of empowerment, my hopes, my¬†fantasies. I cried more. Then I receive a pink shot from the¬†bartender¬† She says you need this love you Lisa, she happens to be my cousins gf. how embarrassing but you know what? I DON’T CARE!!! I’m over¬†embarrassment! My son needs insulin damn it!

Thank you for helping me inject my son with what he needs. Thank you Spa Rodzina and the gracious employees. Thank you to “Michigan Happenings” for yet another future fundraiser. Thank you to those who support us. I an only promise you one thing. I promise that I am going to do my best to help my son live a life that is filled with safety, love, caring, and provide a nurturing environment for him. I promise that once we have stability that i am going to “pay it forward” and help other families, its my life goal and passion. I can only do it if I get our lives stabilized and we receive the “insulin”. Things are falling into place and i cant wait for the sweet taste of victory and ill look forward tot he email from the “naysayer” at the conference today.

Until then, I’m going to finish my homework and get an outfit ready for St. Patty’s Day. Ill paint my nails green…..with envy.

Peace, love, health, wealth and happiness ūüôā God bless you all.

ITS MY BIRTHDAY!!!!

Wow.. been a while since¬†I’ve¬†blogged. From October until this month things were EXTREMELY rough. However, life has calmed down, thank God. Now I’m playing catch up on my studies and trying to catch up on bills etc. (who isnt right?). I am so extremely grateful that Preston’s medications are working right now. RIGHT NOW being the key words. You see he isn’t on anything too new. A brief recap on Preston’s medications. Risperdal.. our best friend and worst enemy. The drug works great for Preston but makes him eat compulsively and obsessively, its non stop. As soon as he gets home he rushes for food.. he will compulsively and¬†erratically¬†grab: popcorn, dinty moore, ranch & lettuce, chips & salsa, ice cream, juice, pudding, yogurt, etc. I have to hurry and have something ready¬†before¬†he walks in the door and sometimes that helps sometimes it doesn’t. I’m not exaggerating when I say he eats non stop. About $200 a week in food. So with that being said science and nature take its course and my child gains weight..which means the risperdal isn’t as effective, so the psychiatrist ups the dosage. Then he eats more.. up dosage, more weight gain, more eating… you see the pattern right? So then it gets to a point that he can no longer take it because he becomes borderline diabetic. Uh oh…This is where the “fun” starts. Aggressive abusive behaviors. Destructive behaviors..DESTRUCTIVE. He breaks glass, throws food and drinks, flips over the tables and furniture, he broke a stainless steel chandelier last week. He literally pulled it out of the ceiling and it almost fell on him. A few days ago he came to me with a bloody hand, I have no idea how or where he cut himself.¬†ImageImageImage

 

Sometimes he eats the drywall during rage and meltdowns:ImageImage

He floods the bathroom nonstop, by flooding I mean he splashes and ALWAYS finds a way to flood the bathrooms. I can sit on the toilet while he showers (which is about every 30 minutes right now; which is better than every 15 minutes) and he will start splashing and I make him get out then he has rage, he meltsdown, he gets aggressive, he becomes destructive and violent. My floor is caving in for the 2nd time. I remodeled the bathroom last year trying to make it waterproof, that cost $10,000. Fail. Image

However I am not alone. I know that I am a good parent. it is HUMANLY IMPOSSIBLE to do this alone. One person CANNOT control these behaviors by themselves or with a spouse other siblings etc. Which is the reason for me seeking help and to place Preston into a home with 24 hour staffing. I’m working on it and just waiting for our fist big meeting. So right now its the calm before the storm. I know that in the future I am going to have to¬†fund-raise¬†to come up with the money to make Preston’s plan work. I know this because my friend that i have never met in person but on facebook is going through very similiar circumstances with her autistic daughter Issy. Her name is Issy Stapleton and she is at a facility that helps children with autism and behavioral issues. The center as mentioned in previous posts is $800 per DAY. I am a widowed mom struggling to pay for dinty moore. I don’t know how I am going to do this, but I will the same as the Stapleton’s.¬†

¬†It’s my birthday. I am going to relish in the joys I have had latley like sleep, and hugs from my son and smiles on his face. It’s still a battle, he’s still aggressive and destructive, but right now, today, this week, our life is “stable”. Now you could look at those pictures and think..”that’s stable”? Yep, that’s stable and a great life for us. Not. BUT it’s not as bad as it was. “that bad” meaning…Im not sleeping with one eye open wondering if my son is going to whack me over the head with a chair or bowl, or a knife or something. Thank God.. but it’s temporary. It’s my birthday and I¬†have¬†such a great group of friends who have sent cards, hand delivered beer and put it in my car for me, a good friend¬†insisted¬†I celebrate my birthday. My mom is taking Preston for two WHOLE NIGHTS! I am going to a casino and going to do my¬†damnedest¬†to forget about my house and my woes. I am going to celebrate my life. My “calm” life and try not to think about the storm ahead.¬†

It’s my birthday, MANY people say what can I do.. there isn’t a ton but you listening and reading is good. For right now we are okay. BUT it is my birthday and I am asking a favor. I need to pay it forward. I am asking that if you can spare a dollar (or more if you can/will) to my friend Kelli Stapleton. The money will go towards keeping Issy where she needs to be for a little bit longer to receive the help she needs. Every penny counts and every day at treatment helps this family. There will come a day when I will be in the same boat, but today, this week, right now… we’re okay. My friend is not. Please help of you can. That’s what I want for my birthday. Here is the link:

http://elberta-alert.org/2013/02/05/issy-stapleton-fundraiser/

Thank you for reading, thank you for caring, thank you for loving us. Most of all thank you for the support, the comments, the positive vibes, and mostly the prayers. I couldn’t do this without you… yes YOU! YOU are all I have. I read your comments with tears streaming from my face and it puts a fire under my ass. It makes me “keep on keeping on”. Everyday. Today. God Bless you all. Have a great weekend…Im off to the casino. ūüôā¬†