My wife has a new examiner article up.
My wife has a new article up at the examiner.com. Please give her a click. It’s a great article and each click helps pay the bills and support our family. Here is the short link: Cleveland Examiner.com.
Thanks
LT
Posted without proper editing tools from my Blackberry.
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
Posted with WordPress for BlackBerry.
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
Knowing is Awareness
Since I started this blog I have wanted to really be able to help others going through what we are going through. There are so many families out there that are “Lost and Tired” just like us. There are also families out there that are just now beginning the journey into autism and have no idea what to do. It’s overwhelming and honestly quite terrifying.
I want to be able to reach out to these families and let them know they aren’t alone. I remember what it was like when I first heard the words “Gavin is autistic”. I felt my whole world come crashing down. That was five years ago. Now we are going through that again with EJ.
Along the way we have learned a tremendous amount. We have educated ourselves and become experts on our children’s conditions. It has become second nature to us. Yet we still find ourselves quite frequently without a clue as to what to do.
I share our story because I hope our experience, mistakes, setbacks and victories can offer something someone who may really need it. Even if all you walk from our story with is the knowledge that you aren’t alone then that’s something. It’s so important that you know that you aren’t alone.
I hope that our story can open the eyes of those who haven’t been touched by autism. People need to know what autism really is and how it effects everyone in the family. The more people that know the better off we all are.
As always thanks for sharing our story and being a part of our journey.
Knowing is Awareness.
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
How Life Changes After Autism
I want to share and perhaps discuss how life will change after a diagnosis of Autism. When you first hear the word “Autism” it’s like someone sucked all the air out of the room because I couldn’t breathe. It’s in many ways the best and worst day of your life so far. You finally know why your child is “different” but then you finally “KNOW” why your child is different. Best and worst day all in one. You will most likely remember the exact moment you found out. I remember the exact moment for both of my kids.
You will be on a first name basis with words like, spectrum,comorbidity,occupational therapy,speech therapy ect. Plan on becoming an expert in your child’s particular diagnosis because you most likely will. You may very well end up being the only voice your child will have. Be prepared for heartbreak because there will be heartbreak. The world can be a cruel place. You will feel guilt (though needlessly) because you will somehow feel responsible. I have been there, most of us have been there. However, at the same time be ready for joy because you will get excited over every little step forward and there will be steps forward. You will have a new appreciation life that you may not have had before. The little things will mean more then you can imagine.
You will find yourself planning your life out well ahead of time because of wanting to make things as consistent and underwhelming as possible for your sensory sensitive child. You will discover things to do that you never thought of before because you’ll learn what your child can and cannot take. You will miss the things you had planned on doing before the diagnosis but you will discover that those things were just things. You may even find creative ways to do things in a way your child can handle. Those times really make you feel good.
You will find the journey ahead long and difficult. It can and probably will become lonely at times. No matter how lonely you feel the reality is your not alone. One thing you will find out fairly quickly is that there is a very supportive community of parents like yourselves out there ready to share experiences and offer advice or even just listen. We know what you are going through and we are here to help even if the rest of the world seems to be against you. You will embrace your child for who they are. You have become a special needs parent.
I had planned on writing more but right now life won’t allow it.
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.
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
New article up at the examiner
My wife has a new article up tonight at the examiner. Be sure to check it out. Thanks.
Here is the link. http://tinyurl.com/273dvdr
Lost and Tired 