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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SSS —> aka sadness sedation & sorrow

I’m going to try to make this quick.
Preston is fighting to use my bathroom so he can trash it. I’m trying to be strong and not allow it. He has his own bathroom. When he wants to go in there I try to redirect him to something else, tonight it was a bike ride in this cold weather… But hey whatever works.
We finish the ride he then wants to go get French fries. I order a salad, we get home and he wants my salad. I say no it’s mine and all hell broke loose. He punched me hard in my chest. It literally took my breath away. He then starts in his rage throwing things and try’s to attack me. Okay he does attack me. He pulled my hair, head bunted me, punches, slaps, pinches, and threw a glass at me. It breaks on the floor and he comes after me and steps in it. He’s really angry now & in pain. I try to remove the two big pieces in his foot as he’s bleeding all over but he’s still aggressive & raging.
By this time my chest hurts and is getting really tight from the stress. My heart is racing & I’m shaking. My emotions are all mixed and they rapidly fluctuate from anger to sadness to being afraid to trying to keep it together. I’m crying now. I “hide around the corner”, & try to regroup by taking in three deep breaths. I decide to make him take 6 mg of melatonin. It is a sleep aid and it works quickly. It works.. He is calming down enough for me to pull the glass out of his foot. He lays on the bed and I discreetly try to pull it out when, BAM.. He kicks my shoulder. Once again so hard that it takes all I have to refrain from my gut reaction of wanting to beat him. Deep breath Lisa deep breath. I decide to give him his nightly medication. 1 ml of Haldol. It’s a drop of liquid and very strong. Within 6 minutes he’s asleep. I get the glass out & I lay on the couch because my chest is tight and it hurts. I need to breathe and get my blood pressure down.

Sedating my child so that I don’t beat him and so that he’ll quit attacking me. How in the hell are parents supposed to live like this? I’m so deeply and utterly sad. No matter how much I blog… Nobody will ever feel my pain.. Physical or emotional. I can only pray that somehow I manage to get out of this inSain Asylum, help my child & myself and then help other families.
If things don’t happen soon… Who knows what will happen behind these walls… I’m sorry if this post is troublesome … But it’s a reality.
Sedating my 12 year old is the only option these days… Can you even fathom that? Me either.

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Autism Center

So I visited the Center for autism. It was a long drive exactly 2 1/2 hours. I rode with our CMH therapist. It was a nice drive,although I was tired from only a few hours of sleep the night before, literally. She asked if I was nervous and I said no. I really didn’t have a huge idea of what I thought it would be like, so I thought. I was completely wrong, I had a big idea of what I expected.

We pull up to a building that is about half the size of what I expected. Immediately I notice two swings…two swings… two swings. The playground has 2 swings and it is a 12 bed facility. That’s only the residential, there are other areas too. Kids with autism usually have huge sensory needs that must be met. Swings, trampolines, therapy balls, etc are a great way for people on the spectrum to get the input that they need while using these things to meet their sensory needs. Preston is one of the most sensory seeking kids I know. He REQUIRES swinging, jumping, stomping, and water to calm and regulate his brain in order to stay “calm” whatever calm is to him. lol

So on top of the two swings on the playground that were donated, there is a basketball hoop and this is surrounded by a fence that is equivalent to that of a full security prison short of the razor wire wrapped around the top. Not very welcoming. My stomach immediately went into knots and I look at the therapist and she just says, “I know, but stay positive it’s just a tour”. She’s right to some extent. But, lets not be silly here… I know the choices for my son. Can I just say SUPER annoyed. Deep breath, calm, don’t think too much (about your childs future..**sigh***, It’s “just” a tour) deep breath, cold air that hurts my lungs. Although the cold air feels great on my freshly scratched and slightly scabby hands. Thank you son.

We walk in and ask to be seated because they aren’t ready for us yet. Mind you, we are prompt at our scheduled tour. I know, I know, but my anxiety is high and for a “joint” that costs $800 a day you better offer me a sandwich and be ready to give me the freaking tour. I don’t want to sit.. I have A.D.D. and I’ve been in a car with a therapist for 2 1/2 hours!!!! GRRRR!!!!! Okay calm breathe….focus. (I need to add that shes a great therapist.. lol)

The tour begins. It’s a beautiful facility and often moving about I think to myself, wow it would be great to have this surrounding for P at home, I wish I had that virtually non destructible furniture, the non breakable glass, the padded walls and soft floor. What a  great place.. but as the tour goes on.. so does my anxiety and I try not to let my head go “there”, but of course it does.

I see the Beautiful Izzy Stapleton and she is smiling, she is happy, she is pretty. She’s heading in to the bathroom for a shower. I see two other kids who appear fine and content. They have at least 2 staff with them and everything appears controlled and at the moment, content. The kids are learning and busy. But it lacks fun. It lacks therapy swings and balls and all sensory things related. I’m seriously choking up imagining my son without these items that he has grown up with and desperately requires. (his “insulin”) The therapist from CMH says, “breathe”. I take a few deep breaths. I am able to hold back my tearsat teh facility, …….right now as I’m typing my heart is starting to race and I’m at Archies in Davison. Crying.. again.. as i’m in public. But not sobbing.. just a few tears that fall from my over flooded eyeballs here and there…Who cares. Carry on. 🙂 I need tear napkins. Again. My mom just text, I also need to get lettuce for Preston………. I’m sorry you don’t care about lettuce.

So the tour ends and I’m disappointed in the lack of “fun” at the facility. However, I understand that if “fun” was involved in the decor, it would be destroyed. We are talking about extreme behaviors with autism. Fun can be distracting and used as weapons. UGH just another realization that I’m at an intensive treatment and residential facility for my “baby”. This is going to be tough. It’s not fair, but life isn’t fair is it? People die. People struggle with cancer, AIDS, infidelity, blindness, pain, suffering, addiction, dysfunction, abuse, hatred, financial despair, and MANY other things I haven’t listed. I’ve even learned that some people are so blessed that they can’t appreciate what they have because they haven’t had trauma or heartache. Life isn’t fair at times for most of us. It’s about how we act when those challenges are in front of us. We can fight or do nothing. Negative attitude or a positive attitude.

I am blessed. Yes life has been a huge challenge, but it makes me who I am. It makes me appreciate many things that i’m pretty sure 90% of the people that are in my life don’t appreciate.

The stupid facility sucks. I don’t want it. I don’t want my baby there. Not sure of the outcome. I’m extremely vulnerable and sensitive right now. But where will I be if I don’t try? I don’t want to know. I’m going to stay positive and constantly remind myself of where we are now and where we will be without help. Hopefully in the future I will say I love the facility, and that it helped tremendously and saved our lives.

I’m blessed, I had a man that loved me unconditionally, I was able to feel the baby inside of me. I have a piece of my husband forever or as long as we get to live, I have the ability to make choices. I have a roof over my head, a loving family, and the most supportive and big group of friends of anyone that I personally know. When it comes down to it, I’m the luckiest person I know.

Thanks for making me feel that way. Its amazing. Go ahead, be jealous…;)

I love you all and thanks for the support.

Relief with grief

First and foremost I want to thank you all for reading and supporting. I need to clarify something though.. Nobody has ever judged me by saying I will eventually or possibly sooner versus later put Preston in a residential facility. What I have been judged on and criticized for, is my parenting… Or lack thereof. It makes me doubt myself. However I’m trying to resolve this situation and I’m trying to believe my supporters versus the non supporters. It’s hard sometimes. That’s enough about that.
So today I had a 4 hour appointment at CMH… Holy schmoly… Much was accomplished and some VERY exciting news. My son got new medication. It’s 8:03 and he’s asleep!!! Better yet he was much less aggressive today when he got home from school. We aren’t completely out of the woods and this is temporary. One of the meds prescribed is a medication he was just taken off of. He eats non stop compulsively when he takes it. It’s called Risperdal. He can only be on it for so long before he becomes borderline diabetic, it is no longer effective, and they will take him off of it again. So the “success” is bittersweet. But ill take the break. I can’t wait for him to smile again, to hug me, to kiss me. It’s all I have from him. To not get that and have him hitting & abusing me is a horrible feeling that cannot be described in any blog.
I also have doubted my blog, it feels narcissistic in a way. I hope my reasons for doing it show through and I hope that most people understand. I know not everyone will & I’m completely okay with that. I know it’s hard to read or view. It’s like those damn commercials about abused animals with Sarah McLaughlin singing that God awful song in the background guilting us and bringing instant tears! It’s like you don’t want to see that crap! It’s sad! It hurts! It’s easier to turn the channel, but we know the awful truth; the abuse exists….. And people I hate to be the bearer of bad news, but so does autism. One day your child will work next to a person with autism, your grand kids will care for a whole generation of kids diagnosed in the 90’s with autism. One day a person with autism is going to change the world… Oh wait, thanks Einstein.. Mozart, Picasso, newton, Darall Hannah, robin Williams, Dan Akroyd,etc.
So please don’t turn your head, don’t sweep us under the rug, don’t turn your nose, and don’t blame the parents! We couldn’t prevent this! We didn’t cause this! Just accept us, accept them! “They” are humans, with feelings.
On a final note tonight, I would like to express two things: 1- to my friends and family worried about us/ me. I’m okay, this didn’t happen overnight. Preston has ALWAYS been this challenging but I’m really good at disguising it. I’m really good at managing him…… Most of the time. The difference between now and then is that he’s bigger. His punches cause massive bruises. His pinches bring tears to my eyes, his kicks take my breath away. The objects he chooses to throw are no longer sippy cups and Legos but chairs and tables.
Scary? My gosh yes! Emotionally damaging? Ummm yeah I cry A LOT! Physically a threat? Yep. But I’m working on it and I’m no sissy. I’m Preston’s mom and I’m a warrior. We’re going to get through this come hell or high water. I have God on my side.
The 2nd thing I need to mention is my friends, family and all supports. I cannot thank you enough. I have had friends, acquaintances, & strangers offering words of support and most importantly asking what they can do for help. When you offer support it heals a part of me. It gives me strength. In all honesty there is not a whole heck of a lot you can do for us. Please understand that as much as I appreciate the offers of help whether it’s cleaning, watching p, or getting me drunk (jk), there just isn’t a ton one can do but I deeply appreciate it. I love you all and know that just the supportive words help.
Share my blog. It may help someone you know or don’t know. Tonight I read a blog that was shared by a friend on Facebook. As sad I was to read it, I was elated. Her post talked about the money time and emotion she put into treatments therapies Etc. for her daughter. I have done everything she has & we are in the same position. To know this today gave me a super boost a recharge, a jump start! It’s like I had several orgasms with Johnny depp (don’t ask how I know what that’s like)! It elated me… Just to know that I’m not alone. I’m not a bad mom. So share… Read… You never know how or when it could help someone.
Love, hugs, peace, health, wealth, & happiness.
Tonight ill sleep a little better than I have in a long time. Thanks friends!
Sincerely,
Preston’s mom, a boy with severe autism who is trying his best to be happy and well behaved

For your viewing pleasure I am posting a video of a tantrum in the car…remember Sarah McLaughlin!!! 😉 oops guess I’m not! It’s $60 for a year to be able to post ..hold that thought maybe next month lol
However here are a few pics taken over the last week…. We’ll call them ” a glimpse inside the inSain asylum 😉 enjoy…

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“Typical” Night

It was a rough night. Preston got home from a not so good day at school and the guilt came flooding in. He had a field trip that I forgot about. Mother of the year :/ oh well it happens to the best of us…. Carry on.
He seemed to be doing okay and I was pleased. Oops too late screams out of nowhere. He’s frustrated and pinching and biting. I seriously have no clue why. I try to distract him by asking him if he wants cheesy bread ( his latest “crack food”) he nods yes & we go get the bread. He’s still upset but not as aggressive. I realize it has been about an hour since I medicated him… He’s on yet another new medicine. One more day of observing & if the rage resumes the med is doomed.
Home we are and he sat at the table to eat, started crying and the aggressiveness towards me started again. I redirect to a bath & try a new product that my mom and brother suggest. HUGE HUGE HUGE MISTAKE! The stuff is a mess! You put it in bath water and it turns to slime type of material. Great sensory play but apparently I did it wrong and it was equivalent to opening a diaper and pouring that jelly stuff in the water. I try to tell him get out… More rage and water and gooey diaper like substance is splashed and thrown all over the bathroom. From ceiling to floor.. **sigh** breathe… Don’t cry.. Don’t cry.. You just have to clean it no biggie. Carry on.
Rage hitting biting… Don’t lash out.. Leave situation, breathe.
Okay deal with angry P… Redirect to computer… Success!!! 🙂 I love you Bob the Builder & YouTube! Finish cleaning bathroom…text from latest bachelor: what are you doing? Me: not much … But I’m sort of busy can I text you later? Him: you always say that..
Preston is back.. Angry pulling on me.. Damn you Bob the Builder! Me: ha yes, well I’m a busy girl sorry ill ttyl 🙂 him: no response
Go to help p on computer, he broke the mouse. Crap. I’m doomed. “Preston you broke it, sorry”. Rage, he pinched me so hard while I was on the floor.. I fought back tears and pinching him back or hitting him. Please God give me strength. Please God help him calm down. He runs into kitchen shakes the refrigerator so hard that the door opens and food falls out. I can’t control this.
Benadryl
It’s only 7:00 but I seriously don’t know what else to do. Bachelor #1 (B#1)texts again: have you seen Harry Potter? Me: no B#1: it’s really good… All of them you should watch them sometime!!
DAMN IT! I drop the top to Benadryl and P took his opportunity to spill the sticky neon pink serum on the kitchen floor. Me: yeah ill try to get to that sometime B#1: what are you doing now?
melatonin
I can’t do this and I’m tired. I give him melatonin. He is willing to lay down in my bed. Awesome deal… Go for it.
Success. It’s 7:37 and he’s been quiet for ten minutes. 🙂 where do I start? The bathroom? Kitchen? The computer room? He knocked everything off the desk, including the monitor and keyboard. I should unplug it all and hide it or issues in the morning…
Ugh morning. All in all not a horrible night just a tough one….a day in the life… Note to self: add Harry Potter to bucket list lol
Crap I never responded back. I need to go pretend I’m normal while I clean goo from the bathroom ceiling. I am praying Preston sleeps all night.

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