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

 

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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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. 🙂 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 🙂 God bless you all.