We need to find a van…
We used to drive a nice Saturn L200 but honestly it was to small. We were without a car when we lost it. My aunt and uncle gave us a Kia Sportage and that got a through some tough times. When the electrical system went completely nuts (apparently a known and non-repairable condition) we had to finally put her to rest. We are very grateful and lucky to have such generous family. Then my parents fixed up their Chevy Lumina and gave that to us. We are currently still driving that. However, with the behavioral issues some of our kids have (namely Gavin) we have safety issues to worry about. So we are in the market for a new or nicely used mini-van. We have found that the pilot seats work out really well. The kids stay separated and are still easily accessible. Everyone has their space and we can even safely bring Maggie along for the ride.
Right now it’s honestly probably smarter to start thinking about making the move. I have some pending repairs that will need to be done in the near future. I looked a few of them up to get an idea of the cost involved and I found this site called http://repairpal.com. I searched for things like timing belt and found this http://repairpal.com/timing-belt-replacement. Then I looked up water pump and found http://repairpal.com/water-pump-replacement. This is pretty cool because this site kind of breaks things down for you and helps you to estimate the cost and find a shop to have it done. Computers are my thing not cars so this was a nice find.
Then I actually started playing around with the site and they even have car reviews, kind of like epinions.com where regular people write the reviews based on personal experience. For example you could look up ford escort and find this http://repairpal.com/ford-escort-2001. In my case I used it t check out my future van the chevy venture it actually got great reviews http://repairpal.com/chevrolet-venture-2005.
Anyone out there have any experience with mini vans? Please share because we really do need to make the move this summer.
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.
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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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Emmett John and Sensory Problems
EJ has been really struggling with sensory related things. He is not tolerating clothes right now very well. It have evolved into he doesn’t tolerate his diapers either. He acts like they actually hurt him. We have removed tags and try to find clothes without pronounced seams but the diaper situation is going to be a problem.
I have been looking for my “Easy Button” but I seem to recall them being re-collected when they diagnosed my kids. But if anyone has an extra they want to send me that would be great 🙂
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.
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.
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.
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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Where to begin……
Where to begin? I have been slacking a bit on posting mostly cause I’ve been in lots of pain and my computer needed to be shown who’s boss.
Lizze had an absolutely brilliant day. She got EJ and G appointments at the children’s hospital. EJ goes later this month and G goes next month. She got a lot accomplished on the medical front today. Great job honey. I know she worked through a tremendous amount of pain today and I’m grateful for all she did.
ER had another nightmare last night that ended with him and I downstairs on the living room couches. Not real comfortable for me but he felt better so…..
EJ has been fighting us on wearing shirts. He can’t seem to tolerate the seams. He totally freaks out until we take it off. We are going to have to find some sensory friendly shirts for him. He woke up tonight screaming again like he was in pain. We finally got him back to bed and we are going there ourselves. Big thunderstorm outside and I have to porch door off our second floor bedroom open. I love storms. I’m laying here and I can smell a house fire. Hope everyone made it out ok. I heard the trucks a bit earlier. Sometimes I really miss the fire department but mostly the guys.
G is really struggling. He just continues to regress and no one seems to know why. It’s like he is becoming more infantile, if that makes any sense. He seems to be struggling with identifying objects. Like we asked him to take the bucket of cars and put them away. Lizze was actually handing him the bucket and he kept picking up a book off the table like that’s what we wanted him to do. We are working to get him whatever help he needs but it takes time. That’s the really frustrating part is the waiting. It’s all we have to do sometimes. We are getting him into camps so he doesn’t lose any of the social skills he learned our the past school year.
Today is my Grandmother’s 85th birthday. I wish we could go see her but right now the kids, mainly EJ and G wouldn’t do well. One of the many sacrifices what have to be made when special needs kids are concerned.
Hopefully everyone is doing better in the morning including myself.
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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
I know that it seems like all I write about are depressing things. I write about lots of problems. The reason for that is because IT IS OUR TRUTH. These are the things we are living through every day. It’s hard to see any positives in the face of so much adversity. I know it’s depressing to read all the negatives all the time but try living it. We don’t get to walk away. We don’t get a break, EVER. We are going to fail if we don’t get help. We are going to fall apart if we don’t get a break.
The point of this blog was to start the conversation by breaking the silence. Sharing the unedited truth is really the only thing I can do. I have lost almost all of my friends and a huge chuck of what was supposed to be family because no one understands.
I had hoped that along with me getting to vent that this blog would give some insight to my family as to what we are experiencing. I think it’s easier sometimes to just pretend we aren’t here. People go about their own lives as though we don’t exists. Maybe it’s just easier to assume I exaggerate or even make these things up, right. Don’t misunderstand me, no one owes us anything. At the same time family is supposed to be there when you need them. Despite all we have been through and everything we are continuing to go through we are always there to help. Many times we are the first ones everyone goes to when they need something. Sometimes we see that they need help and just offer without having to be asked because to me that’s what family does. . I guess it’s not fair to expect others to do what we would do. That said, some of my family have literally saved us at times by loaning us money and we are grateful for that. But we need your time.
The absolute truth is that we are drowning. Everyday it’s getting harder and harder to tread water. We get no sleep and no break. I’m the oldest of 6 and not one person actively seeks out any of our kids to spend time with. Our kids have no real relationship with my brothers and sisters. They live 10 minutes away and we never see them. I can’t even get people to respond to my texts. Being the oldest I have always been there for you guys. I need your help. Why will no one help us?
I know that some of the kids can be complicated and difficult to handle at times but they still need you ACTIVE in their lives. All I’m going to accomplish by this is getting it off my chest. Very few people in my family actually read this even though they all know it’s there. I want to move far away. Maybe then it wouldn’t hurt so much that we are alone. I could justify the lack of contact by saying to myself we live to far away otherwise they would be here.
Thank you for sharing our lives. LT
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.
Thank you for sharing our lives. LT
Thanks everyone for the thoughts and prayers. I’m very grateful for all of you. We keep all of you in ours as well.
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.
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.
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
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 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.
Happy Mothers Day
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.
Stick that in your pipe and smoke it
I did it. I did what the Best Buy “Geek Squad” said was impossible. My sister Kate had all of her graduate work on a usb thumb drive. The drive went bad and she lost everything. She didn’t want to bother us at first so she asked the Geek Squad. They said it couldn’t be done.
I got a good portion recovered. So I say to the over priced and under experienced Geek Squad “stick that in your pipe and smoke it”. Score one for the little guy.