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

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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

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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

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

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.

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

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

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

These are the words I never had

Roughly 9 years ago we first met. The moment I saw you I knew something was different. Everything was about to change. I couldn't put in to words what I was feeling.  I just found a song and it was like it was meant for us. It felt like I was re-living  those first weeks of our relationship. I vote this becomes our "song". We debate over what our "song" was back then but maybe we can just go with this one.  It say everything I didn't have the words for back then. Please know you are loved and cherished.

[youtube=http://www.youtube.com/watch?v=51-BHVbjT2Y&feature=related]

I love you.

Pins and Needles

We are in the waiting room waiting to get the results of Lizze's MRI from a few weeks back. We will hopefully find out about the migraines, the tremors and the neuropathy. This has been a really long wait.

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

Some news on Emmett John

Today has been a really rough. We got Emmett John to see his pediatrician today to follow up. Turns out the hospital missed quite a bit. This is what we learned.

His nose is broken but doesn't require surgery at this point. The biggest thing was the bruising behind his ears. I heard that and got sick to my stomach. That is a sign of intracranial bleeding. He said he is concerned about major internal head injury. Dr. H said on a scale of 1-10 he is worried at about a 6. Emmett John is doing fine after 24 hours so most likely all will be fine. We have to watch him closely over the next few days. If we notice anything at all he goes straight to the ER.

Gavin had a perfect day at school but struggled at home. Elliott Richard is fairly traumatized after watching his baby brother fall down the steps. He was so brave. After it happened he calmly came upstairs and told me that Emmett John fell down the steps and needed my help. Elliott Richard was ok till I told him that I was taking Emmett John to the hospital. He began sobbing hysterically. He was so scared for Emmett John. He is my sweet little angel. We must be doing something right because Elliott Richard is turning out pretty good.

Lizze and I are both still sick but still alive. Lizze has really been struggling with her pain the past few days.
I wish she could catch a break.

I have been better but also worse. I just wish I was in a better physical condition (mainly my back). I would be able to do more then whàt I can do now.

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.

Another long night......

Last night was another long night. Emmett John woke up about 3:30 am screaming again. We couldn't do much of anything to console him. I wish I knew what was going on. Lizze ended up taking him downstairs about 4:00 am.  She is upstairs now with him sleeping. These nights are killing us....

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.

It's Raining (in my freaking kitchen) UPDATE

So I pulled apart the top of the tub to check out the plumbing. Turns out that is may not be so tough after all. Now it's just finding the correct parts and taking it apart. Not much room to work.

The main problem is finding the money and deciding if we replace the whole setup. Lizze needs something with easier handles because it hurts to use the handles on this set up.

Been looking on line but I think I'll just have to go to the depot.

Lizze MRI update

Lizze had her much anticipated MRI on Friday morning. This is a precautionary but necessary step because of her migraines, tremors and neuropathy. We will hopefully hear back soon because we need some peace of mind.

I don't expect anything to come of this because the migraines are probably related to the firbo. She has also cat scans done and they have all been clean. Please keep her in your prayers.

Rob

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