Breaking The Silence of Autism

Business

Today has been……

Today has been challenging. I woke up this morning and realized that I used the wrong debit card yesterday while at the hospital. That is a $120 mistake. I’m also looking for a new bank now so if anyone has advise let me know.

Gavin was at the doctors for the infection on his hand. He came home and slept for 5 hours. Very weird.

It’s so hot on the 2nd floor of our house. The first floor is air conditioned and nice. I need to figure something out because I don’t want the kids to get sick. I got fans but there is no relief. I may have to put off the chipper (for the trees we just took down) for a week and look at another window air conditioner for the 2nd floor.

On the business side of things I started advertising on Facebook and Google. I’ve placed like 200,000 ads for $6 out of pocket. Look up Computer Re-New on Facebook and “Fan” us. Let me know what you think of the site also http://www.computerrenew.org. I look forward to your thoughts and ideas.

Have a good night.

LT

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Sleepless in Ohio

Today has been hell. Gavin was throwing meltdown after meltdown. He almost smashed EJ’s fingers in the door when he slammed it in his rage. He actually threw something at me today when I shut his window in order to spare the neighbors from his screaming. I’m very quickly getting to a point where I have nothing left to give him. If he had smashed EJ’s fingers they would be broken for sure. He slammed the door so hard it rattled the windows. I don’t know what I would have done and that honestly scares me.

Gavin is getting more and more aggressive. We can’t get the doctor to call us back either. He is honestly a horrible example for the other kids. I don’t know if he is even capable of listening at this point. He won’t even stay in his bedroom when he is sent there. If we held him accountable for just the major things he would never leave his room. I don’t even know for sure if he can even learn from his mistakes. It’s almost not worth the effort anymore. We have so little left and what we give Gavin is almost pointless and better served by giving it to the other kids instead.

I’m very aware of how this sounds but it’s our reality. EJ is downstairs with Lizze (it’s 2am) cause he woke up screaming and he only wanted her this time. I hope she can get some sleep tonight.

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I want a do-over for today

So I go to my mailbox and get a letter from the bank that we over drafted. So I log in to my account to see what happened. I looked over the account and ALL activity. I should have never over drafted. I was never over my limit at all. The over draft or should I say over drafts (4 total) however have caused lots of over drafts themselves.

I have a call into the bank and I’m sure they will figure it out but until then I have lots of money but it looks like this. “$ -xxx.xx”. 😦

At least they didn’t screw up the business account.

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Another long day……

Gavin was in rare form today. He was in “I’m not going to listen to you” mode all day. If I didn’t know better (maybe I don’t) I’d swear he was doing it on purpose.
He just seemed to be all over the place today. I lost track of how many times he ended up in his room to decompress.

I knew it was going to be a long summer but I just didn’t know how long.

LT


The Drama that comes with autism

If you are familiar with autism you probably already know there can be quiet a bit a drama that goes along with it. Gavin can be the king of drama at times. Today he got in the middle of the dog and cat “playing” and he got a tiny barely visible scratch from the cat. Not that it didn’t hurt but he started screaming like he had just been stabbed. Sensory issues are at work here to but honestly it was drama. He was fine for a minute then realized he could squeeze it to the point it would bleed. By bleed I mean basically turn red.

As soon as he saw the “blood” he totally lost it. He kept squeezing so more blood appeared and then he would scream some more. We sent him to his room and said when he is under control we’ll look at it again but we can’t do anything with him acting like that. He melted down on the way to his room. A bit later he emerged and was fine. Great job Gavin.

What’s so ironic about this is when he gets mad he will slam himself into his door over and over. He will hit himself and leave bruises. These injuries he never complains about but the tiny little scratch is the end of the world.

LT


Join the Lost and Tired Network.

I started a community as an extension to this blog. I would like to invite everyone to check it out. I want it to be a safe place for all of us to go and share our stories. You can post what you need to post. I ask that you keep it clean and respect everyone.

I want this network to be able to provide information and support to those in the community who may be struggling. Sharing your story, good or bad may give someone the hope and strength they need to get up and move forward. Anyways, I’m not sure how this will work out but you have nothing to lose.

Here is the link Lost and Tired Network


Another Long Night

Had a rough nights sleep last night. My back is bothering me to the point that sometimes I actually consider the surgery. However, I can still cope with it for now. EJ and ER both slept through the night for the first time is a while. EJ woke up at 4:30am and wouldn’t go back to bed.

The kids might be hanging with my parents today and G is going to spend the night. ER and I might have a very uncomfortable camp out on the living room floor again tonight.

Lizze has to double her depakote today so we aren’t sure how that’s going to go. She has a doctors appt today at 3pm and we have to go grocery shopping.
Maybe catch a nap later if we’re lucky.

I rebuilt my business website yesterday and today. It’s a work in progress. But feel free to check it out and let me know what you think. http://www.computerrenew.org

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It Rained……..Inside

So this morning it rained. I happen to look behind our tv and I noticed water dripping inside the window. The storm windows were closed cause the air was on. I looked again and the windows had actually filled with water. When I open the inside window the water poured out onto the floor. The water was dripping through the wall into the window. I have all the computer business hooked up over there but we caught it before they were damaged. That would have been devastating. I have built up a lot of stuff for the business over the years and I would not have been able to replace for a bit.

My dad and brother came over and laddered the side of the house and fixed the clog in the gutters so it was no longer running down the wall. Thanks Big Time for the help.

Had to move everything around so the house is torn up but ok. Could have been much worse……

Thank you for sharing our lives. LT


Honesty Post

Look I’m going to be completely honest. Everything has gone down hill for me this evening. I thought I was holding it together but I’m done. Gavin is driving me absolutely CRAZY. He just can’t do anything like he’s supposed to. I’m only talking about things I know he is capable of. Simple 1 step tasks seem like we are asking him to reinvent the wheel. He stalls and stalls all the time instead of just doing what he is freaking asked. Everything seems like a game and the game is manipulation. I swear he plays head games with ER. He wants to play then doesn’t want to play. If he does play he is the only one that is allowed to have an imagination. Anything ER imagines is quickly shot down by Gavin because “it’s not real”.

As a parent it’s hard to watch this happen. However, if I’m going to be completely honest, it’s harder for me because ER is my first born. I raised and finally adopted Gavin. It’s just not the same thing. I know how it sounds believe me. I also know how big of a monster it makes me feel like. It’s the truth though. I have this overwhelming instinct to protect ER from Gavin. I have to be extremely careful not to play favorites but it’s getting harder. EJ never really interacts with Gavin but when he does it’s the same thing. Gavin actually complains when EJ cries. He actually complains. I realize it’s probably sensory but HELLO, WE ALL have to listen to and feel every single one of his God Damn meltdowns. I just want to scream “hello pot, meet kettle”.

I sound juvenile but I can’t even explain how overwhelmingly frustrating it is. I just get to a point where I can feel myself cracking into pieces. I don’t know how we are supposed to know what to do? Who do we cater to? I don’t see a way to do this without “playing favorites” so to speak. Sometimes I feel like just giving up. Nothing I can do will make things any easier for anyone. Gavin is always going to be difficult. Elliott Richard will probably always be trying to connect with his big brother even though he just keeps getting shut down.

I have no idea what’s going on with Emmett John. Will he ever talk? Is he going to regress and slip away like Gavin? This scares the shit out of me every single day. Are we doing enough of the things right that we are making a difference? How do we even know? The children’s hospital still hasn’t gotten the paper work to get things started. That paper work has been faxed at least twice by different people and even mailed weeks ago.

All of this makes Lizze’s condition worse. Fibromyalgia feeds on stress. Our lives have become a freaking all you can buffet for it. There is no way to take her pain away or even make it better, even a little. This kills me. It’s like waking up everyday to a nightmare.

One of the worst parts is that I KNOW very few people actually know what this feels like. I hear how things could be worse. Worse is a relative term, it’s different for everyone. For me I feel like at times we have finally hit rock bottom only to have the floor collapse and we continue to fall. I don’t want this for my family. I wouldn’t even want this for my worst enemies family.

There are times in dealing with things that I think everything just might be ok but tonight everything just seems to be falling apart around me. The things we need to help us just aren’t available. At this point I have talked to some of my family and asked them to get certified as care givers. Then instead of complete strangers getting paid to provide respite, family can get paid to do it instead. I’m hoping someone agree’s to do it. Everyone is living there own lives though and we don’t always fit in. The kids don’t have nearly the relationships with my siblings that I had hoped they would. We are the only one’s with kids. I had hoped that my brothers and sisters would be active parts of their lives but they aren’t really. That hurts. We need a break. That’s the best help we can get right now but it’s also the hardest to come by.

LT

Thank you for sharing our lives. LT


Thank you

Thanks everyone for the thoughts and prayers. I’m very grateful for all of you. We keep all of you in ours as well.

Goodnight

LT


End of the day

The end of the day has arrived. I find myself alone on the couch with Maggie, my blackberry and Extreme Makeover Home Edition on Hulu. Lizze went to take EJ to bed and never came back. They are curled up sleeping next to each other. ER and Gavin are both sleeping. At least ER is sleeping, I think Gavin might still be moving around. He is quiet. So he’s probably just playing peacefully on the floor.

Gavin just came down to tell me he can’t sleep. This defiantly points in the direction of manic. We visit this place quite often.

The rest of the day was relatively uneventful. Lizze and I are going to watch the entire series of King of the Hill start to finish over the summer. So we actually watched a few tonight after she woke up.

Sunday has nothing on the agenda for us to do. We need to try to make the house accommodate the special needs of the kids.

LT


Sacrifices

I knew the day was coming. We shut off the satellite today. We need to dig deeper to cut expenses and that is really all we had left. We are actually pretty excited because we will be saving the money each month now. I have my tower for the computer business hooked up to the big screen so we now just stream netflix and watch our weekly shows on hulu. We just have to wait an extra day to watch.

We have actually been pretty fortunate to have things to either sell or shut down. This usually makes the difference we need it to. I the many years I have worked for Microsoft I have received many things from them. I have received free tablet pc’s, free copies of just about every software they release. It’s like having liquid assets when needed. I can sell that stuff on ebay and make enough to get by when things are bad.

Even Lizze does testing for some major companies like Dell and HP. She gets free stuff all the time. So this really has been a saving grace for us in the past.

All in all it’s somehow always worked out.
Getting rid of TV was always a last resort because we needed our sanity but it was next in line on the chopping block.
We had already dumped the Xbox 360 and PS3 a while back. There are always ways to make it by if you really have to. We are however, at the end of that buffer. But it looks like business on the constructions side will be good to us this summer. And I always seem to get a computer in for repair when we really need it.

LT


I want people to read just how amazing my wife is

My wife has been through so much. I think it’s important her story be heard.. She deserver’s to have her story heard…

To read more please visit her Blog

………Dear Nicholas,

We’ve been apart nearly 10 years and there’s apparently still a piece of me that is afraid of you. I used to be so strong before you. My Granny taught me never to fall for a guy like you. I still don’t know how it happened. Well, that’s not entirely true. I thought I could save you. I thought I could save you from yourself. First, from the gang that didn’t exist in the end. Then from your parents because they didn’t understand you. Little did I know that they didn’t understand you because you were stoned all the time.

I wish I had known how much of my life was based upon lies. How do you keep your life straight in your head? All the lies you tell? Or did you only tell them to me? Did everyone else get the truth? No, that can’t be right because I know you aren’t Autistic. You’re a Sociopath. So you lied to the doctors in Columbus, those are more lies to keep straight. Unless you just don’t go back now that you have the diagnosis.

This whole “I’m a changed man” crap. Is just that, crap. You don’t just change from what you were. Not who you were but what you were. You were a monster. You are a monster. You always will be a monster.

I don’t know how you treated your other fiancées. Do they know how you treated me? Are they aware of how you used to sit on the couch and obsessively clean your swords? Especially while we fought? Or how you used to sleep with the swords under the couch, thereby under you, because you refused to sleep in bed with me?

To this day, I don’t understand why you never wanted to sleep in bed with me. You asked me to marry you. It was your idea. And yet, even when we lived at your parents house and they were on vacation, you wouldn’t sleep in the same bed with me most of the time. I didn’t understand it then. I don’t understand it now.

You said you loved me. Yet you did everything you could to sabotage our marriage. You wouldn’t sleep in bed with me. You abused me. You misused me. You were hurtful. You neglected my son. You abused him. You sabotaged marriage counseling. You continually brought your mother into our marriage. Every fight. Every misunderstanding. Every time I told you “no”. Every time you wanted beer. You called your Mommy and pulled her into our marriage.

Should we discuss your treatment of me throughout our relationship? I think we should. The technical term is Domestic Violence. Let’s call a spade a spade shall we? Since if I remember correctly, you just love the Ace of Spades…so a spade a spade…

YOU. ABUSED. ME.

You screamed at me. You tormented me. You mistreated me. You threatened me with your sword collection. You called me names. You threatened me, in general. You threatened to take Gavin from me – then you would lie to the courts and see to it that I “never saw Gavin again” if I ever told anyone how you treated me. You cheated on me. You pushed me down the hallway. You showed me how you would plot your abuse case against me – so you could tell the police how abusive I was against you if I ever tried to leave. You sabotaged marriage counseling – my last-ditch effort to make our marriage work. You denied me affection if I sought it out. One night when I tried to connect to you by partying with you and your friends (including your mistress), you raped me. You pinned me to a door by my throat with Gavin clinging to my left leg. You tried to put your fist through a table over a childhood milestone – an over-reaction because I had company over for once. You tried to put your fist through the side of the refrigerator. Drugs? You did those. Alcohol? You drank those. To excess? Yes, you had that covered too. You are an alcoholic, addict wife-beater. You stole my social security number in order to obtain social services after I’d left you. You ran up massive charges in my name at Hollywood Video renting movies I already own after I left. You also ran up large bills in all the utilities – gas, electric, cable, phone – and left them in my name but refused to pay them. (That one is okay though because I just had your electric shut off on you.)

Let’s talk about Gavin for a second. Gavin is mine. Now he is ours – mine and Rob’s. Then, he was mine – just mine, not ours. You may have had a slight part is helping to create him but that’s it. You didn’t help to care for him. You never truly loved him. You skipped his 1st Birthday Party! You say it was to work. I say it’s because you’re an ass. You could have requested to have the day off. They would have given it to you. You didn’t ask. So you missed the party. You slept through his 1st Christmas morning! You were sleeping on the couch and I tried to wake you up. You yelled at me and said, “He’s not going to remember. I’ll see it all later!” then you passed out again. (Never mind the fact that the gifts for his 1st Christmas were purchased by your parents because you took the money out of our checking account and spent it on drugs. But who’s counting, right?)

Were those not good enough examples of your horrible parenting skills – or the complete and total lack there of – with Gavin? How about this one then? How about my first day of work at HH Gregg? Remember that one Nicholas? I had to be at work at 9am. At 8am I was getting ready and I woke you up – again from where you were sleeping on the couch. You woke up and smoked a cigarette. You promised you would stay awake and not go back to sleep. I left at about 8:30am. You were still awake. Gavin was asleep and not due to be awake until about 10-ish. I called from work at 11am – no one answered. I wasn’t too worried – yet. By 1am, when you still didn’t answer I was worried. I called repeatedly. Finally, I called the neighbor. She went to the Apartment Complex Manager and got the spare key to the apartment. Do you remember what she found when she let herself into the apartment? Do you?! She found you – passed out cold and totally unresponsive on the couch. She found Gavin – in his crib, where he had been for over 19 hours at that point! He had cried himself hoarse. He was soiled through his diaper, through his sleeper and onto his crib sheets. He had attempted to finish his bottle from the night before – the one with spoiled formula in it. (Formula because you made me wean him because you were jealous of the fact that he was breastfed when he was 6 months old. Let us not forget that.) When she found him he had no tears left to cry. Which means he was dehydrated.

All that happened because you had to get stoned while I was at work because you couldn’t and wouldn’t hold a job and couldn’t and wouldn’t stay sober. Just out of curiosity, do you remember what happened to the job you had right before I got that job? You were working at Check Smart and $300 went missing. The way I hear it, it went missing on your shift. They can’t prove it was you but they also can’t prove it wasn’t you either. So they just let you go. Interesting…

You know, when I started this letter I didn’t set out to bash you. I also didn’t set out to word vomit everything you did, or said, or thought. I was aiming to be more graceful and eloquent with the whole thing. I guess somethings you just need to get down and out. At least it’s out there though. Now I know that I’ve finally said my piece, or part of it, and I’ve been heard.

Good, bad or indifferent…I’ve been heard.


I Wish

I wish we could sleep through just one night.

I wish I knew how to better help my family.

I wish I had friends to get together with every weekend.

I wish I could just take the kids to the play ground.

I wish my wife and I had date night.

I wish my house was safer for the kids.

I wish we had more money.

I wish I wasn’t in pain every day.

I wish I could see a future.

I wish we could get the minivan we so desperately need.

I wish I had the luxury of drinking sometimes.

I wish Emmett John would go to sleep.

I wish my family understood how bad things are.

I wish people wouldn’t try to show us the silver lining.

I wish Emmett John could talk.

I wish Elliott Richard had friends.

I wish Gavin would stabilize.

I wish I was a better husband and father.

I wish I had more to give.

I wish I had the luxury of many other peoples problems.

LT


Happy Mothers Day

Lizze,

You have given us so much. I wanted to show you how amazing I know you are.  You are responsible for giving me my children. That is something I can never fully repay you for. Everyday you raise above all the pain you are in and you all that you have. You are a shining example of what a mother should be. Not only are you a mother but a special needs mother. I hope you realize how much the kids and I love you.


I wish life had a reset button

So I sent my invoices from our contracting company to Ryan Homes today cause they were due. In the email I also wanted to double check that they had received my auto insurance renewal cert.. They never received it. That’s a little bit of a problem because now they have put a hold on our payments. Like the one we had been waiting for next week. My insurance company faxed it today but it’s to late now. Everything has been delayed till May 22nd.

This also makes payroll impossible. I’m going to try to get an exception on this but it probably won’t happen.
During the slow times I only have my brother working for me. So I was able to get his payroll covered (thanks to mom and dad) but the buck stops here. I left a message last week with my agent to remind them to fax it to the corporate office. They didn’t get the message I guess. I have been to distracted and didn’t follow up like I should have. I really wish things could get just a little bit easier. I would be happy to just catch a break.

LT


Truthful Reality

Sorry for the dreary posts today but it has been an especially bad day. Gavin is driving me absolutely out of my mind. We need to get him stabilized ASAP.

Emmett John is going through something. I wish I knew what it was so I could help him better. He is becoming so destructive. He gets angry for whatever reason and he lashes out. He knocks things over and throws what ever he can. He absolutely targets Elliott Richard. He hits him with blocks, cars and other toys. We stop him and try to tell him he can’t do that but he’s 22 months old and doesn’t understand. He screams alot of the time. It’s like he’s a bat and uses the high-pitched screeches to navigate with. We have somewhat learned to interpret his noises but we are always teaching him to use his words.

Elliott Richard is taking it for both sides. He has to deal with Gavin’s outbursts and now Emmett John’s aggression. I wish we were better able to shield him from all of this but we can’t. He is always glued to me. He has to be everywhere I am. It honestly doesn’t bother me at all. The problem is that Emmett John is going through the same Daddy phase. They fight over who gets to sit on my lap. It just never seems to end.

Lizze is in the worst place health wise she has ever been. She can’t get rid of the migraines. Her fibromyalgia related pain doesn’t seem to ever give her a break. The only thing they can do for her to seriously, seriously medicate her. She avoids it when ever she can because the meds completely knock her out. That means she can’t drive or even watch the kids because they make her fall asleep in the middle of whatever it is she is doing. Instead of taking the pain meds and feeling better she just pushes through the pain. Amazing…

My back is in pretty bad shape lately. I really need surgery but I keep avoiding it because of the risk and down time. I spend every day trying to figure out how to keep us moving forward. We desperately need to get a van because our car is way to small and falling apart. Gavin and Emmett John are both special needs and they need their space. Right now we have 2 car seats and Gavin all in the back of a 94 lumina. Elliott Richard has nowhere to hide from Emmett John. We have almost had a van a few times now but it always slips through our fingers. I used to really stress out over bills but anymore they are a back burner issue to everything else going on. Why stress out over bills I can’t pay when my wife is sick and 2 of my 3 kids are at least autistic. When you only have so much energy left, you have to prioritize. The spring and summer are better times for the business and things get a bit easier but until that happens things just don’t always get paid.

Our house is falling apart around us. The kitchen sink and bathroom tub is leaking. There are no (not one single one) water shut off valves anywhere besides the hot water heater in the entire house. It’s all very old plumbing and going to be costly and challenging to fix.  One of these days I ‘m going to take pictures of the insanity that is our homes plumbing and post them. We also have about 20 oversized original (over 100 years old) windows that are all falling apart and way to expensive to replace. The wiring in the house is still knob and tube in some places and the updated parts of the house were poorly done. As a contractor I know how costly and difficult these things are to repair and/or replace and I hatehaving to fix them incorrectly just to make things work with what was already there.

We are in our house on a land contract so we can leave when ever we want. However, we have nowhere to go. Gavin significantly limits us to where we can live. Because of his meltdowns and other various behaviors we couldn’t live anywhere that shares a wall, ceiling or floor with anyone else. As parents to special needs children we already know that most people don’t understand.

My wife and kids deserve better than what I’m able to give them. Admittedly, my hands are tied in most of these matters but that doesn’t make me feel any better. I should be able to give them more.

I know I’m not alone in my feelings on this subject. Where is all the help for families like ours. MRDD funding for Gavin is a complete joke. They were supposed to help with a fence so Gavin can safely play outside but that never happened. Now with Emmett John going down a similar path what are we supposed to do. Things are going to be even more challenging than they already are. We have very little help as it is.

I said when I first started blogging that I was going to tell it like it is. This is my/our reality. This blog is really my only escape. I’m not looking for or trying to elicit sympathy when I do these posts. I write what I need to get off my chest. It’s that much less I have to carry with me.

These are all truths my family and I live with everyday. Right now is just one of those really low points for me as a husband and father. It’s like I’m forced to watch my family crumble around me and there is nothing I can do to help. It’s like those dreams where you are running as fast as you can but aren’t getting anywhere. Maybe tomorrow will be a better day than today was. I never hold my breath anymore but I will certainly be grateful for a better day tomorrow.

LT


I launched my new business website..

I had big issues trying to migrate our business website to a new host. As a result I had to start from scratch. I have been fixing computers for many years. I have worked for Microsoft for about 12 years now. My last project I worked on was Windows 7. I have been using Windows 7 for a few years now.

After I destroyed my back while I was a firefighter/paramedic I needed a way to continue to provide for our family. As our family life became more “complicated” and my back continued to get worse we decided to pursue the computer repairs (that I was doing for everyone anyway) and grow it into a home business. Things have slowed down since Emmett John came along really because our attention has been so divided.

Things are getting tougher so I decided to more aggressively pursue new business. I wanted to migrate our website to a new host but that ended in disaster. So I had to start over from scratch. I finally published it the other day and thought I would share it with you guys. Be nice because it is a work in progress 🙂 http://www.computerrenew.org

Thanks

LT