I'm testing out a new location for this blog.

I think I'm moving to blogger. I need java to work and I can't afford to self host right now. So this is being posted from blogger. I'm currently testing twitter and facebook.

Please let me know what you think. I think I have more options here....

Thanks

LT

Maybe we aren't so different.

A friend sent me a message on Facebook today. She had some information she thought we might be able to use. I was touched by the gesture but what really hit was what she said later. I'll share that in a minute.

I have said many times that I wish people understood what it was like to be in our shoes. She responded to that honestly by saying, " I cant say that I understand completely except from one parent to another your happy when they are happy, you laugh when they laugh, you cry when they cry because you love them so much. "

That statement really hit me. If more people felt that way then maybe we could bridge the gap. Maybe we wouldn't have to feel so isolated. People wouldn't have to walk in our shoes to show or feel compassion for our children. They would just understand on a basic human level. Our kids are hurting so we hurt. On that level who couldn't relate? Clearly we have different challenges but we all love and support our kids. We all hurt when our children hurt. Maybe we aren't so different after all.

LT

Posted with WordPress for BlackBerry.

Camp Day 1

Elliott Richard had his first day of camp today. He had a blast and can't wait to go back. It's kind of bitter sweet because he's just growing up to fast. But I'm glad he had fun and wants to go back. He deserves to have a childhood.

LT

Day camp....

Elliott Richard is off to his first day of day camp. He so desperately needs to get around kids his age. He tries so hard to engage with Gavin and his efforts are fruitless. I hope he has fun and wants to go back.

Gavin's Weekend

This weekend was pretty good. Haven't had a good one in a while. Saturday was my grandmothers 85th birthday and everyone went to surprise her. Lizze and I had to stay back because she had a med change and a doctors appointment. My parents took all the kids for most of the afternoon and Gavin overnight.

Elliott Richard and I camped out in the living room watching king of the hill on netflix. We got up this morning and ran some errands. I did yard work and then we had a bonfire. Gavin got home around 5 or 6pm and had dinner and went to bed. He was exhausted. EJ and ER went to bed without a problem. Lizze and I watched "The Alphabet Killer" on netflix and called it a night. We had a very welcomed underwhelming weekend.
LT

Let Sleepless Begin....

Well ER just had a nightmare that we were all driving in the car and the wheels fell off and we crashed. He was pretty freaked out so now he's snuggling with us and going back to sleep.

Thank you for sharing our lives. LT

Autism has changed me

Autism is changing me.

I have become very bitter and angry. I'm angry that I have lost my friends. I'm pissed off at the "family" that forced us to walk away. I'm angry at the "family" that walked away from us because they couldn't hack it. I'm angry that my career is gone. I'm angry that Autism is stealing away my children. I'm angry that Gavin will never live a "normal" life or even live on his own for that matter.I'm angry that he will never have the opportunities so many people take for granted.  I'm angry that we are so alone. I'm angry that I have to sit here and watch  EJ deteriorate and no one seems to take that seriously. I'm angry that the people that should don't seem to believe that this stuff is really happening.

I'm angry with myself for not being a better father. I'm angry with myself for not being a better husband. I'm angry with myself for not being a better provider. I'm angry with myself because I can't get the van we so desperately need.  I'm angry with myself for not being able to keep up with the house. I'm angry with myself for losing my patience so often lately. I'm angry with myself for letting autism change me.

LT

No Sleep

It's 2am and EJ is still screaming. He's been to the dr and nothing was wrong. He just had a bug. He's acting like it hurts to touch him. Maybe sensory overload? ER is sleeping on the couch. He came down crying. He passed out on the couch next to me. He just needed some comfort I guess. I'm going to go try to help Lizze with EJ again.

Thank you for sharing our lives. LT

Long night

Last night seemed to go on forever. EJ was sick and fussy all night long and ER kept having bad dreams. I think I finally got to sleep around 3am. Lizze let me nap this morning and that helped. I just got ER off to quiet time and I'm going to just chill while everyone is sleeping.
Maybe catch up on some "Splinter Cell: Conviction"....

Thank you for sharing our lives. LT

Losing a son to autism: A father's grief.

I hate autism. I hate everything about it. My kids are not autism. I hate autism for doing to them, to us what it has done. Autism is a thief. It's a coward. It sneaks in and steals our kids right out from under us. Autism is a cruel and unforgiving disorder. It takes relentlessly and never stops.

My Story

I hate hearing how it could be worse. What is it like to have autism in our lives? As a father, I don't know if I even have the words to describe what it's like. I'm sorry if I offend anyone with this but it is what it is. Gavin is our 10 year old son. He died at age 3. That's what it's like for me. He has a rare, regressive form of autism. Sometime after his 3rd birthday a switch flipped and the Gavin we knew and loved was gone. I really mean that. The child that was, no longer existed. What remains is a shell of who he was.

Unless this has happened to you, please don't judge me. Gavin was my everything. He wasn't even mine but to me he was. We went everywhere together. We went fishing and to the playground. We had camp outs in the living room. One day all that was gone. He would no longer connect. It was like he didn't know us. He would hug us out of habit. I felt the difference. He was gone and we didn't even get to say good bye.

The truly cruel part of his autism is that for many years after we would get these glimpses of him. It was like someone briefly waking from a long term coma, confused about what happened but there. He would somehow find his way out. It never lasted more then a few moments and then he was gone again. Every time this happened it was like losing him again for the first time. It was like watching him die over and over again. He would come back and then go away again. Very few people know what that feels like. It was torture. Having someone you love taken away is a horrible thing but imagine having them taken away over and over and over again. Watching helplessly as something dragged them away into the dark and there is NOTHING you can do. You actually grieve as though they are dead, because in reality the person they were is. The person you knew and loved is gone. All you have left is the physical body, a shell. The essence of who they were no longer exists.

Now imagine having finally come to terms and then out of nowhere they come back. You don't know what to do or say because there's no time to even process it. You finally figure out what to say and they are gone. All the things I had wanted to say if I had the chance slip away unsaid. I don't have to imagine anything. That is my reality every single day. Every single time I grieve like it's the first time. I don't know how else to explain it.

You want to know how terrible I am? Do you want to know how weak I am? After awhile I actually prayed for him to stay gone. God forgive me, I just couldn't take it anymore. The pain I experienced each and every time was unimaginable. It's like a nightmare you can't wake from. I can't explain what it feels likes as a husband and father to experience this. You see them physically there but that's it. They don't connect on any meaningful level and everything becomes mechanical, emotionless and empty.

Gavin hasn't found his way back in many years. There are so many things I want him to know and I will never have the chance to tell him. Most of what I say anymore has little to no impact on him. I can't have a conversation with him because he doesn't pay attention. Everyday I have to see what I no longer get to have. The pain never goes away. Anyone that says that it does is either lying to you or themselves.

Now let's talk about guilt. Not only are you grieving but the guilt is unbearable. You feel like it's you fault. You might not say it but deep down you blame yourself. If I had only been a better parent. You question everything you've done. You try so hard to remember when it happened but you can't. I have one memory that haunts me. It's the last memory of Gavin I have. He was 3 years old and I took him fishing for the first time. He actually caught a blue gill all by himself on his little fishing rod. We were fishing off the gazebo at the time. I remember him sticking his head between the spindles on the outside walls talking to the ducks. I actually have a picture of that. I was tired because I had just gotten off of a 48 hour shift as a medic. He wanted to stay and play with the kids on the play ground. I said no and we went home. That was it. I never had another chance after that. He started slipping away shortly after. The worst part for me is I never got to say goodbye. What would it have hurt to let him play a little bit. I took that from him.

I know all about guilt. I hate everything about my relationship with Gavin now. It's tense and volatile. I have no patience for him anymore. His behaviors, though not always his fault have put a tremendous strain on our family. I'm often resentful anymore for the impact this has had on Lizze's health as well as pur other kids.

But what if the truth is I resent the fact that his physical person is here and that's all. What kind of person let alone father does that make me. It just hurt's to much sometimes to see him but know he isn't there anymore.

This is what it was like for me to lose Gavin. This wasn't easy to write but I just needed to say it. Maybe it explains why I am the way I am. Maybe it gives you a better understanding of what it's like to be me. Maybe you know someone going through this also. Maybe now I won't have to keep explaining why we do the things that we do. Maybe I can just leave this here instead of carrying this around with me.

LT

Thank you for sharing our lives. LT

Elliott Richard: sensory issues?

Elliott Richard is believed to be very high functioning aspergers. We have been paying more attention to some of his behaviors as of late and have noticed some things. ER has NEVER tolerated the tags on his shirts. I have to cut them out (which drives Lizze crazy cause we won't know what size it is) or he won't wear the shirt. He says they hurt him. We kinda played it down before but now realize it might just be sensory issue. He also cannot stand water passing over his ears. Again maybe sensory.

As Dr. Patti has stated, most people would never notice any of these things. This kind of stuff shouldn't effect his life in any real negative way. We do however, know that he is struggling with anxiety right now. He constantly grabs himself like he has to go to the bathroom. As we all know, aspergers kids are very prone to anxiety issues. We are working on some testing forms for him to give us a better picture of where/if he falls on the spectrum. The family history certainly leads us to think it's a real possibility.

We don't want him to be autistic or have ADHD. However, we do want him to have the best opportunities in life so if there is something he needs help with we want to know, so we can get that help for him. ADHD is a very real possibility as well. Lizze has ADHD and it's "extremely" genetic. It's more likely then not our kids will have it to some degree. We just want to try and stay ahead of the game.

LT

Thank you for sharing our lives. LT

Rough day

Today has been a rough one. Gavin got off to school on a bad note. I was up all night again with ER. EJ few off the couch several times today and has a bruise running up and down the left side of his face. We can't sem to stay ahead of him no matter how hard we try, and believe me we do.

As you are aware we have had some family drama which has impacted us in a negative way. We have begun to rise above this and I plan on leaving this behind me now. We have more worthy things to spend our precious little amounts of energy on.

Gavin had a good day at school but a really rough time once home. He just doesn't listen at all. He was talking to ER about his dead cat. I have told him countless times not to talk to ER about ANYTHING like that but he doesn't listen. So I had to spend over an hour trying to explain why we could not save Gavin's cat and bring him home so Gavin can be happy. Gavin has become very good at stalling when he doesn't want to do anything. Pointless question after question time and time again. It's driving me crazy. He won't just do the extremely simple and mundane tasks we ask of him. He drags it out to the point that I want to say "forget it, I'll do it myself". However, I can't do that because he will just do it again and again. We can't let these things work or we will be chasing our tails forever.

Lizze has returned to the school PTA as president. While I have my concerns about her taking on anything else right now, she is really good at it. The school really needs her and it might do her some good and be a distraction. She let the position go this year because it was just to much. The principle wants to take her to lunch the first week of June. She is really excited about this. I'm very proud of her and look forward to helping her next year.

We owe the school a tremendous amount. They have really helped Gavin and will eventually be helping EJ. This is a charter school so they need all the help they can get. I can't say enough about how they change the lives of these kids. I think Lizze might be doing an article in which she interviews the school for the examiner.

I'm currently catching up on my shows and doing laundry. It's really the only quiet time I get so I take what I can.

Have a great night..

LT

Thank you for sharing our lives. LT

Longer Nights

It's now 4am and I have Elliott Richard on the couch in the living room. He keeps having nightmares. He's exhausted as am I but is not able to go back to sleep. This is all probably anxiety related. It's going to be a long day. :)

LT

Long nights

It's 1:30am and Elliott Richard has already been up twice. Everytime I close my eyes he's crying. It's going to be a long night again. ;)


LT

So far so good

Lizze and Emmett John took a 4 hour well deserved nap. I in turn, got to hang out with Elliott Richard. We had fun, didn't do much, but we had fun.

Picked up Gavin from school he did really well today. He got frustrated and was hitting himself again but at least he wasn't hitting anyone else :)

Gavin and I had to run some errands before going home and he did really well with that also. He walked into people while at the store but that's par for the course. I can live with that.

Now it's getting close to dinner.

A better tomorrow

Gavin and Emmett John both had pretty tough days. Elliott Richard was pretty much along for the ride. Gavin ended up with oatmeal for dinner (which is actually an MST technique). The oatmeal for anyone who thinks it's cruel or mean is used as a consequence for certain behaviors that must be discouraged. Behaviors such as violence and inappropriate touching. These behaviors will get him in lots of trouble as he gets older. We love him and we don't want him to have that happen so his doctors have said it's extremely important that we deal with it now.
Oatmeal is very healthy for you. He simply doesn't like it without sugar. So he gets a bowl of plain oatmeal. It's the only thing we have left to discourage these behaviors. We carefully choose when to use it cause it won't work forever. Typically all we have to do is mention it and that's enough.

Gavin went to bed in a bad mood but before he that he said he thinks tomorrow will be a better day. I'm always impressed when he says this. We tell him this all the time, especially of his really bad days. We want him to know that everyday is a new beginning and we should use it to learn from our mistakes and be the best we can be.

It's nice to hear these little statements from him. It show that sometimes he is actually listening. He may not understand what it means but he's listening.

LT

Autism Effecting Elliott Richard

For the second time this week poor Elliott Richard has got his fingers slammed in the door. Today he was trying to keep Emmett John from sneaking into the bathroom. All he is doing is trying to look out for his little brother. Emmett John has no fear so we have to constantly follow him around. Elliott Richard feels he has to look out for him also because he loves him.

Inevitably, Elliott Richard gets hurt in the process. He takes being a big brother very seriously. I just wish isn't wasn't so dangerous.

LT

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

A little bit of peace

This was earlier tonight. I was giving Elliott Richard a bath before bed and Emmett John decided to jump in. Maggie was there to lick up as much bath water as possible (at least it's not the toilet).

LT

I need a mute button

I have decided that I wish my kids came with a mute button. They have been screaming ALL day long. I swear it's like they have developed their own language and it's based on screaming.

So I decided I need a mute button. You can buy those universal remote control's that cost a few hundred dollars. They are supposed to control everything under the sun. I thought I would check one out but guess what no mute button for the kids. I'm not going to give up on this. I will continue my search for a mute button. In the event you find one before I do can you please let me know. Assuming I have any sanity left to salvage I'm going to need to get 3 of them.

LT