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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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

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Please share so others can help us too…….