It has been an "oatmeal" kind of day.

It's been a rough day but Gavin has been very difficult. Gavin has listened at all today. He just seems to ignore the rules anymore. I swear to God if I hear him say "I'm sorry" one more time my head is going to explode. He's only saying sorry because he got busted. He doesn't learn from his mistakes.

We are seeing more of the mental health issues at work here. These problem's go way deeper then Autism alone. I honestly don't know how much more of this I can take. I gave him chance after chance today and he still choose poorly. So he had oatmeal for dinner. He had almost 30 min to eat a really tiny bowl. He didn't cause he was stalling. What he didn't know was that he would have gotten desert if he had eaten it. Honestly he had more then enough time to eat what was given to him. Again he choose poorly. At least it's good to know the oatmeal is still effective.

LT

Posted with WordPress for BlackBerry.

Autism and the school year

So I have been thinking. Wouldn't Autistic children benefit from a year round school year. It would prevent or help to prevent the loss that occurs over summer break. The kids love and need their routine. It would also serve as a sort of respite for parents.

Gavin would benefit from this tremendously. He loses far to much progress during summer break. I know funding is an issue but there are always ways around that. Just a thought.

LT

Posted with WordPress for BlackBerry.

Autism and Comorbidity

Autism is challenging enough as it is. However, throwing in comorbidites is the really tough part because you rarely know what is what. We chase one symptom only to make another worse. In Gavin's case we never really know what his capabilities are because he is so behaviorally limited by all the other disorders.

LT

Autism and Hygiene

Hygiene. As if Autism wasn't challenging enough. How do you deal with hygiene issues? Gavin is having issues with bathroom hygiene, like cleaning himself up after going potty. Sometimes he cleans himself up and sometimes he doesn't. He won't talk about it and won't left us help.

The other big problem and it's a big problem is that he sometimes doesn't want to pee in the potty so he just pee's his pants. He doesn't change them afterwards. He just goes on like nothing happened. We just realized this the other day. He says that "sometimes he just doesn't want to get up to go potty". He gets engrossed in what he's doing and won't walk away.

What are we supposed to do with that? I guess we at least know where the smell was coming from now.

LT

Autism and Discipline: How do you manage?

Disciplining your kids can be tough for parents sometimes. But what if your child has Autism? Navigating the world of Autism is like trying to put one of those generic puzzles with no picture together. You are often times flying blind. I can't tell you how many times I have felt lost and defeated.

In our case with Gavin, he is a quagmire wrapped inside an enigma. He has so many other mental health issues that it really makes things difficult. How do you hold him accountable? What are the standards and are they set to high or to low? What is he actually capable of doing? These are all questions my wife and I have asked for years. Just when we think we have it figured out we realize things like, he has been playing us.

One thing about Gavin is he's truly gifted in the art of manipulation. I really mean that. He's that good. Unless we always assume he's playing us it's all but impossible to tell the difference. I bet so many of you out there know what I talking about. Should we always assume he's up to something because that feels wrong? How far is to far to push when there are no clearly defined limits?

I long for the day I go to the mail box and find the instruction manual for Gavin has finally arrived.

LT

Controversial Video from Autism Speak

This is a very controversial video from "Autism Speaks". I'M BY NO MEANS ADVOCATING THIS VIDEO. I'm not sure how I feel about it.

[youtube=http://www.youtube.com/watch?v=HDdcDlQVYtM]

I guess I have mixed feelings. On one hand I think it makes a good point making autism out to be a predator of our kids. Because the truth is it acts that way. Some people effected by autism are very high functioning and successful. I hope that this video was focusing on those without a voice of their own. I don't think that they made demons out of autistic kids if you really listen. I think the narrator is supposed to be autism talking about what he has done, is doing or will do to our kids. The fact is that even the strongest marriage will be tested under the stress of living with autism. A good portion will fail but not all. This is similar to any chronic disorder in a family unit.

On the other hand I think they used the videos in the first half of the video poorly. People could very easily infer that the voice is referring to the kids in the video as autism. I don't think that was their intent but it appears to have had that effect on many people. I think this was meant to have shock value and I think they came across wrong. I can see how some people see this as exploiting the people living with autism.

The fact is that we are all fighting for the same thing. We want to give them the best chance at life we can.  With autism involved it can be next to impossible. If nothing else this video got people talking. We need that.

I'm very curious to see what you guys think of this video. Please let me know what you think.

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

Gavin's Continues Regressing

Gavin is acting strange, even for him. :e walks around with his eyes almost closed. He mumbles when he talks. When he talks each word is like 15 seconds apart.

He said he wasn't feeling good and his tummy hurt. He looks like he's not feeling good. However, he could have been saying that to get away from ER. Either way we sent him back to bed to get some rest. I don't know if he's eaten anything he shouldn't have. Lizze caught him eating his toe jam the other night. So your guess is as good as mine.

Now he wants back down and claims his stomach never hurt. I'm home with the kids alone so I can't battle him right now. I sent him back to bed. Cause if he did lie about being sick then he needs to meet the consequences for that. If he really is sick then he needs his rest. It's kinda win win. I don't want him eating anything because if his stomach does hurt then he will make himself vomit. He does that in this type of situation because he thinks he has to vomit.

Lizze should be home any minute now. EJ is still sick and fell asleep on me on the couch. ER was up all night again. Lizze and I took turns with him. Needless to say no one slept well. Again.

LT

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

Autism: Safety Issues

We had some tree trouble today. My neighbor came over and help remove some large damaged limbs that threatened my neighbors property. Gavin had been in bed for a bit and Lizze had the other two in our room hanging out.

I just happened to look to the front of the yard and there is Gavin walking around. He let himself out of the house and into the yard in his BJ's. He has only done this once before. Last time we caught him in the alley going through peoples trash looking for things to recycle. We have to watch him much closer now. This kind of increases the risk now. He can't just let himself out that is way to dangerous. This all goes back the continued regression we are seeing.

We already have all the doors tied into our central alarm. When a door opens it's announced but you cannot hear it from upstairs. We'll need to get an extra panel upstairs in our room so we can hear it. Going to be re-evaluating some things now. Gonna be. A long summer.

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

Frustration

Frustration, it goes along with autism. I'm quiet often frustrated with Gavin. We were getting ready to walk out the door to go to school this morning and I noticed something wrong with his pants. The whole back side of his pants was covered in tooth paste. How do you get tooth paste on the back of your pants. It turns out that he had gotten tooth paste on his hands and so he wiped it on his pants and even the back of his school shirt instead of using the towel that was right next to him. Little things like this are expected but exhausting.

The other day Gavin was getting ready to take a shower. We have been having big issues with showering because he doesn't rinse his hair. So we spent 10 minutes reviewing prior to him getting into the shower. He takes a 15 min shower. We check him to make sure he rinsed his hair. He still had soap all over his hair and in his ears ect. We made him get back into the shower to rinse. He told us that he never rinses anything he just wipes it off with the towel when he gets out. He says he doesn't want to get wet. But that doesn't make any sense because he will get himself wet in order to wash but them becomes afraid of the water so much so that he gets out without rinsing. I don't understand his logic but I probably never will. We made him get back into the shower and rinse the soap off. He screamed the whole time like we were trying to kill him. Maybe it's sensory but why would it only be part of the time? Why would he just be afraid to rinse.?

Everyday along our journey we meet new challenges. Everyday I'm surprised by what those challenges turn out to be. It's often very frustrating and exhausting. This is just a small part of the overwhelming nature that is autism.. However, it's these little things that tend to take their toll.

LT

School days

Well it looks to be a pretty crappy day outside. I leave shortly to get Gavin off to school. I think he actually slept most of the night so that should help him out today. Hopefully he has a good day and it sets the tone for the week. Less then 2 weeks of school left.


LT

Please be in a good mood!!

About to get Gavin from school. Praying he had a good day and is in a good mood. I can't take any drama right now. I still don't feel good and I have had all I can take and it's only Tuesday.

Autism and school

School was a nightmare today. Gavin had to go to the office at least twice today. He did not have a good day. We tried to talk to him about it but he "couldn't" remember.

I wish I knew what the motivation for his actions were. He says he can't help it but I don't know whether I can believe him. It really looks like he's making a lot of bad choices. I know he's not being truthful when he says he can't remember if he went to the office today. Or maybe he is and we are dealing with multiples, which has been suggested in the past. Which would explain why he doesn't remember. Most likely he thinks he is going to get in trouble even though we tell him he's not.

I don't know what to do anymore. But we just spent the last hour trying to understand what happened today. We already got the cliffnotes version from his teachers but we wanted to hear it from him. My head hurts and my chest is heavy. If I had the energy, I would just go beat my head into the wall until I blacked out. This is so frustrating.

LT

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

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

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

Just another "Manic Monday"

Gavin is really off again this morning. He goes around the mumbling to himself. Then out of no where he asks us a question about something he's he been mumbling about. Unfortunately, we haven't a clue what he's talking about so he gets frustrated with us.

Most of his coherent conversations with us revolve around food. He is obsessed with eating. He thinks he's starving all the time. The reality is that Gavin cannot regulate himself so he will eat until he pukes. So we have to be very careful with what he eats and how much he eats. We don't want him to develop an eating disorder because his doctors are concerned about that.

So far not a great start to the day.

LT