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.

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.

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.

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.

Sorting this tornado out…is it possible to sort a tornado out?

         So Yesterday I saw my therapist. I have been doing pretty good lately, Preston is as stable as he gets. Although, I also had to take him for his medication review and turns out he is gaining weight at a very rapid rate. Big surprise. She was concerned with this and decided to switch up his meds a little bit hoping to see a decrease in his manic eating. Poor kid, and poor me.. his “manic compulsive eating is costing $200 a month. Ugh. We don’t qualify from any help from the state like food stamps and or whatever other benefits are available out there. Never really have. I’m lucky he gets medicaid but at any point it may be taken away and it has before. Its scary. So back to my appointment, I felt great. I recently had two days to myself and have received some respite during the week..Life is “grand”. Which makes me feel like crap. 

I feel guilt.. I am confused. 

“Why”,  she asks.. and the tears start flowing…my lips swell up and I feel the heat start in my face and chest. Ugh here we go.. “tell her Lisa, don’t hold back be honest”, I tell myself. I feel guilty because he’s doing ok right now. I feel guilty that I’m trying to place my 12 year old in a home outside of our home with care around the clock. She reminds me that 1- my feelings are perfectly natural in an unnatural situation. 2- she reminds me that just because we are good right now doesn’t mean it will be that way in a week or month or two months down the road. She asks if I’m still sleeping on the floor, “Yes”. “is he still having meltdowns and being destructive”? “Yes”. “is he still hitting you”? “Yes”. “Can you do ANYTHING that isn’t planned”? “No”. “Is he still flooding the bathroom”? “Yes”. I’m living in a co-dependant relationship with my 12 year old kid. Perfect…not. 😦

Okay Okay Okay I get the point…but the guilt overrides all of that. I express that I am fantasizing about life without preston here everyday. She asks like what.. I say, “oh sleeping in a clean bed that doesn’t smell of urine. Taking a shower without having 10 minutes of prep time to gather my things ( I have to keep everything in lockdown).., Not having to clean a shower so I can take one. Eating. Enjoying watching tv on a nice clean couch without feeling and smelling dinty moore on it..or ranch. I look forward to a clean screen,tv, mirrors, windows, and laptop screen”.

      Then there is the “selfish part”, I dream about a friend calling and saying hey wanna go to dinner, a movie? Wanna go shopping? I want to say yes so bad, for 12 years.. if I do these things its planned way in advanced. I cannot even fathom a life that is lived with even the slightest bit of spontaneity. I yearn for it so bad. Possibly a real relationship, after all its been 11 years. lol I kind of dream of that… A LOT! I want to work out after work.. I WANT to work. I want to go to happy hour. I want to relax on a sunday morning read the paper and drink coffee. I want someone to say good morning to someone and have them say it back. I want a kiss goodnight from someone who doesn’t have a ranch mouth. 

I feel guilty for these fantasies!!People in my life are struggling to live for God’s sake!!!

I know I know, I shouldn’t but I do, and that’s why I am in therapy. It’s so easy for others to say its okay he needs to go and have “professionals” help him. But this is my flesh and blood. Imagine your 12 year old and a car drive taking him somewhere and knowing that he will no longer be in your house ever again. Imagine its your baby, because in all honesty Preston can’t communicate all of his needs, I am the only one who knows his “jibber”. NOBODY can relate its frustrating to me. Damn it I miss my husband. People say “goodbye” to their kids going off to college or when they get married etc. Not like this. It sucks. 

      My big meeting that has been cancelled twice, now it is scheduled for  Monday. I am very nervous and anxious. It’s me against “them”. A meeting with the big directors and head honchos. Ugh..I can do this. I have to. The therapist said something that made me have my “aha” moment of thinking. She asked me “so you’re doing okay now, do you see yourself doing what you’re doing with Preston for the next 5 years”?  “no”. Can’t do it. I’m so out of patience with him. The other day I swore at him because he was stimming as I put his pants on, he wouldn’t hold still.. we were leaving to get HIS stupid cheesy bread!!! I yelled damn it why wont you listen why aren’t you putting your own “””ing pants on damn it Preston I hate our life! I walked away shaking… upset.. crying…I felt horrible. He cant help it. But I’m starting to really take it out on him. There have been times that he hits me and I hit him back. I’m not going in a positive direction with his behaviors. I can’t. I’m tired and emotionally exhausted. I’m having health problems due to our highly stressful life. I have to remember this. I’m following through with my plan. I have to.. for him.. for me. It’s ok. I’m a great mom. Yes I think… no, I am. 

      So now I need to visit two centers, One in Kalamazoo/Portage and the other in Caro. They are the same cost about $800/$900 a day. There are pros and cons to both. Originally I wanted the Caro one because its closer to drive to, but although its a nice facility, its older. The one in Portage is farther away, but its a newer facility. I feel like the Portage one will use more up to date techniques and strategies with him. I don’t want to visit, but I have to in order to make my decision. It’s going to be hard to imagine placing my baby anywhere. But I must. I have to, its a matter of living or living in hell and continuing to deal with emotional distress and physical abuse. My dream is that he thrives!!! I have talked to a couple of parents who have been through similiar situations ( which was no easy task to find parents who placed their kids in a home at 12 years old, google that and see what YOU get!) lol 

Anyways their kids are thriving and adults now. The parents work hard to maintain proper staffing (the professionals I spoke of earlier) and keep them trained. But the parents say it’s worth it and the kids are doing better. Its hard for me to believe them so one mom said come see for yourself. She says she wouldn’t have believed it either. So one day when I’m brave and strong I will take her up on her offer, she and her son live in midland about 7 miles apart. She has a bf now..she works out and does yoga, she reads leisurely, and watches tv. Hmmm really? I can’t imagine. 

       I’m also preparing or trying to prepare myself for the stress of finding money to do this. I know as of now I will need a lawyer to develop a special needs trust so that any money for Preston is protected and the state can’t use the money as assets. They will take away his medicaid if I have  ANY money in the bank. I need to think about fundraising and the legalities of that. I need to think of how in the hell I am going to get the state to pay for treatment for my son in a facility that charges $800/$900 a day. 

    If my ADD isn’t in full effect I just have to slightly start thinking of all these things and the ADD kicks in like a horse being kicked to gallop. My head is a wild storm, a hurricane, a tornado, whirling and destructive… then I find a bit of calm, and I blog, until the next storm comes along. God please let me be focused on Monday. I’ll keep you all posted. 

Peace, love, happiness, health, and wealth.. not necessarily in that order..;) Lisa

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. 

 

Sometimes he eats the drywall during rage and meltdowns:

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. 

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. 🙂