At the Doc's, Gavin is getting blood work

Sitting waiting for Gavin's blood to taken. He is doing ok but I can see the anxiety building. I'm not sure how this is going to go. He can either be really good or it can take about 9 people to drawl his blood. I really hope it goes well cause I don't have the energy to fight him right now.

Lost and Tired

At the Doc's, Gavin is getting blood work

Sitting waiting for Gavin's blood to taken. He is doing ok but I can see the anxiety building. I'm not sure how this is going to go. He can either be really good or it can take about 9 people to drawl his blood. I really hope it goes well cause I don't have the energy to fight him right now.

Lost and Tired

Random stuff

Sitting waiting to go into Gavin's appointment. Trying to think thru getting our computer business back up and running full steam. I just built my new tower and it's running really nice. I also got most of my testing gear together. I got external burners and external docks for just about any HDD you can imagine. I am in the process of transferring my domain to a new host and my website will be back up. I am going to be working on some marketing things this week as I have time.

We never actually shut down we just stopped pursuing new customers. I still had business but we had just to much going on to focus on both businesses. When the site is back up I post a link here so you can check it out.

Lost and Tired

Oatmeal. It's what's for dinner.

So Gavin had a bad day at school today. He refused to do his work and spent time with the principle. He came home and we discussed his day. He refused to take responsibility for his actions. He still owed me time from last nights drama and in light of the path he took at school he was awarded with oatmeal for dinner.

Now he didn't like this one bit so I know that it is effective. And let's be honest, oatmeal is good for you anyway. We aren't starving him. He just doesn't like oatmeal. It's really the only deterrent we have left that works to some degree.

We are running out of creative ways to give him consequences for his actions.

Anyone have anything that has worked for them?



Lost and Tired

If I had hair I would pull it out

So we have been having problems with Gavin's school not handling him appropriately. There was little accountability for Gavin and that was a huge problem. I thought we had worked out most of the issues but apparently not.

Gavin teachers are trying to teach the kids to listen to their "inner voice". I know there are some out there that are saying so what. I also know there are some of you out there saying "OMG what are they thinking".
Here is why the "OMG's" are correct. Gavin has been hearing voices for a few years now. He is medicated for it but we are pretty sure he still hears them. Gavin's voices in the past have talked about killing, setting the house on fire ect. So now you see the problem we have. His teachers are telling him to listen to his inner voice. We have already discussed this with them but it didn't seem to be taken seriously.

So now poor Gavin is even more confused then he was with just the voices in his head. He had learned to recognise them as not real voices but still struggles with it from time to time. Now he is being taught to listen to them at school. I called the school this morning to demand they stop the inner voice stuff with him. Who knows if it's going to work....


Lost and Tired

Common Sense

One of the most frustrating and draining things about raising Gavin is the fact that he lacks common sense. I am very serious when I say that. Gavin does not have any common sense. That part of his brain just doesn't work. While he is extremely intelligent it's also "think to breath" so to speak with everything else. He doesn't recognise even the most basic safety things like the burner is hot or that's way to high to jump from.

Honestly, Elliott Richard past him up in that department a while back. It's hard to always keep in mind that Gavin really doesn't function very well in the real world. It's really easy to lose your patience because all you see sometimes is a 10 year old doing things that his 4 year old brother knows is wrong.

You have to visualize Gavin as a 2 or 3 year old in a bigger body. So what Gavin does is really appropriate for his emotional age but not his physical age. Way to often I see him as an out of control 10 year old. Gavin is really smart and can do some things that are well past is physical age so it's easy to forget where he really is. That is really one of the most difficult parts of this whole journey.


Lost and Tired

Full circle

Last night Gavin had a HUGE meltdown. After an ok day at school he just wouldn't listen when he got home. He spent lots of time in his room but wouldn't stay there. He kept letting himself out. He got himself so upset that he was at the point of puking. So we decided to pause the punishment and let him just go to bed. He will make up the time today. I told him that he would be having oatmeal for dinner tonight. He hates oatmeal so it is a great consequence. I also told him that if he could make up his time today without a fit then he didn't have to have oatmeal for dinner. The choice is his.

Lost and Tired

Riding the wave

On the ocean of life we are experience high tide's and low tide's. Sometimes there are even rip tide's that pull you out to sea.

We have experienced many low tide's and many more rip tide's in our voyage so far. Today started out pretty low. We had to rush Lizze to the ER because yesterday she developed a HUGE bruise on her lower belly where they made the incision. I was concerned because the bruise showed up a week after the surgery. My parents came and got the kids and we were off to the ER. Everything checked out just fine and we were back a few hours later. My parents held on to the kids so we could get some much needed sleep.

Later on I spent some time with Gavin and Emmett John. Gavin was doing really well. We actually talked and even shot some hoops in the dining room. He was actually engaged. That almost never happens anymore. He played with Emmett John and never once got to rough. I actually had a good time. We even talked about his bio-father (I raised Gavin since he was about 15 months old). I actually finally got to adopt him a almost 2 years ago. Anyway, it turned out to be a pretty good day.

Gavin tends to be this way when he is sick. We have noticed that when he runs a fever all of his autism related symptoms are gone. This only ever happens when he is sick though. They call it the" fever effect". It is documented that this happens to some kids with autism. We haven't had one of these moments of clarity in quite a long time. It was just nice to be able to take advantage of it.

The reality is that he will struggle again tomorrow as he starts to get better. I'll take what I can get ;)


Lost and Tired

What life is like part 3

When you have a special needs child like Gavin your social life goes out the window. I consider myself lucky if I get to watch Law in Order that was DVR'd a week ago. Most of our friends and some of our family are already gone. No one understands that you can't just get a sitter or that it's not a good idea to bring Gavin to whatever is going on. In order to get a sitter we have to keep in mind what Gavin my be like while your gone. We usually try to send Elliott Richard and Emmett John to one place while Gavin goes somewhere else. We are never comfortable sending all the kids to the same place (except in emergencies).
If we can barely handle Gavin then there is simply no way we can expect anyone else to.

So as you can imagine we don't get out very often if ever. It takes its toll on you after awhile. Lizze and I have been together for 9 years and are lucky to get to dinner and a movie once a year or so at the most.

It's hard to watch people disappearing from our lives because either they don't understand our lives or get tired of us having to turn down invites.

We have learned to rarely if ever make plans for the future because something always comes up. People start to take things personally when you cancel at the last minute because Gavin is having a meltdown. Believe me I would rather be anywhere then trapped at home while the entire house is literally shaking from Gavin freaking out.

Most importantly we learn to be alone. We became isolated after awhile and not by choice. It just works out that way.



To be continued.....



Lost and Tired

Some quiet time with the kids

We are enjoying some quiet time around the house with the kids while Gavin is sick. When Gavin is sick he tends to sleep through the day. This gives us a break from all that he can entail. I know that sounds bad to most people but I know some of you out there understand exactly what I mean. We don't want him sick but we will still take advantage of the reprieve we get while he sleeps.

Lost and Tired

Please visit my wifes new blog

http://dailymommysurvival.wordpress.com

Waiting for relief

Well I finished my steroid cycle for my back and sadly it didn't work. My doctor will only let me do this once a year because the steroid that reduces the inflammation also destroys the rest of my cartilage in the process. So I am left with my muscle relaxers. Hopefully they can relax the muscle enough to relieve some of the pain caused by compensating for my left side.

Lost and Tired

Welcome home

I have decided to move my blog from blogger to here. My wife was locked out of her "Award Winning" blog today for what they claimed was terms of service violations. She has had that blog for 4 or 5 years and never violated anything. We believe someone filed a complaint as a "passive aggressive" attack. Anyway, she will be moving here also and when she is up and running I'll share the link.

Thanks for following

Lost and Tired

New time and new channel

I have moved to wordpress because of blogger issues.

Please follow me at the new address

http://lostandtired.wordpress.com

Thanks
Sent on the Sprint® Now Network from my BlackBerry®

Just a another update

It has been a few days since I have been on here. Lizze is still recovering surgery. She is actually having a pretty rough time right now. She is in a tremendous amount of pain. The fact she has fybro. complicates things alot. You can think of it like this, her body interprets EVERYTHING as pain on a normal day. So the pain from surgery is exponentioally greater. She is having in there as usual. She is a strongest person I have ever met.

Gavin is Gavin. I met with the teachers and principle again the other day to discuss our concerns. I actually walked away feeling better about the situation instead of wanting to beat my head into the wall. The teachers are catching on and responding well to the situation. The problem is that we haven't seen a change in Gavin's behaviors yet. It will take some time for Gavin to catch on that he can't manipulate us.

Lately he has been trying extra hard to manipulate Lizze and I. Aside from that he seems to be doing ok. We haven't had any violent outbursts since my last post.

Emmett John s doing good. We are just waiting for the next hearing test...

Elliott Richard is also doing well. We are still waiting for a spot to open up for preschool. He really wants to go fishing this spring. As soon as it warms up a bit we will probably go. We also decided to replace his DSi with a Leap Frog Leapster 2. He wasn't happy at first but he really enjoys it now. He was getting to frustrated with the DSi.

Finally I caved in and had my back looked at. I just couldn't deal with the pain anymore. For those that don't know blow out my back while on a call as a firefighter/paramedic. That was 10 years ago and I need to have surgery to fix it but haven't for many reasons. Anyways, I went and got a medrol dose pack from the doctors. That is a 7 day cycle of (legal)steroids to reduce inflammation. The timing is bad right now because Lizze is down. I have to really take it easy when I am on this med so it can work without me aggravating it again. It was working but not so much anymore because I am doing to much. I can only do this once a year or so..
But right now I am better then I was a week ago so that's something.


Lost and Tired

What life is like: part 2

One of the most haunting problems I feel as a parent is when people have spent "time" with Gavin and say he was a perfect angel. You're probably saying to yourself how could that be bad?

The truth is I hate to hear that from people. The reason being that it makes me feel like a failure. Gavin does so well for "them" it must be "me". It is so demoralizing. The reality is that most people see Gavin as this sweet innocent child. They see him this way because no one ever spends enough time with him to see everything. That's not meant to be a slam on anyone either, just a fact.

The problem lies in the fact that when he is "visiting" someone they tend to entertain him, which you would expect. As his parents we get the brunt of everything because we challenge him and he doesn't get away with anything. This is what he doesn't like. He hates to be challenged or caught lying.

The sooner people see Gavin for who he actually is the better his chances are in life. He needs the strict rules and structure or he will have no chance at any type of independence in the future. Treating him like a victim and getting sucked in by his masterful manipulation skills is a dis-service to him.

Lost and Tired
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This is my reality.......

You want to see who Gavin really is? Here you go. This is not pretty but I think it gets the point across. Sweet, innocent Gavin died many years ago. This is what we are left with. So please don't tell me how perfect he was or how well behaved he is. He DOES NOT just need understanding or anything else. This is the ugly, dark reality of what our lives are like. We are prisoners in our own home.

This whole thing started because he wanted his pencil sharper. His pencil was just fine. He was trying to manipulate us and we weren't allowing it. I told him it was fine and to go do his homework. He started freaking out on the steps. I told him "we're not having it". So he went upstairs and trashed his room and broke his pencil in half. I told him that he would be going to school in the morning without his homework done. He made the choice to trash his room and break his pencil. He didn't know my phone was recording. This is very typical of his meltdowns. I don't care what anyone thinks about me posting this. I am so tired of sugar coating things to make others feel better.

Almost back to normal

Well Lizze has been home resting. The kids came home tonight. Elliott Richard is sleeping on one couch and Lizze is on the other. Emmett John is up stairs with me.

Gavin seemed to do ok at my parents. He had a bad day at school Friday. He was in the principles office at least twice. That is not good. We are still having issues with the school at this point and I am not sure what we are going to do.

I want to thank everyone that helped with the kids (not that any of you actually read this) the past few days. Also thanks for all the prayers for Lizze.

Tomorrow will be fun.

Lost and Tired
Sent on the Sprint® Now Network from my BlackBerry®

Screw wordpress

Wordpress shut my blog down because they say it violates there terms of service. That blog was an exact port of this one. I don't see the problem....

Bye Bye wordpress

Lost and Tired

Recovery

The surgery only took about 25 minutes. Everything went well. She is in recovery for about 2 hours and then I can see her.

We can then go home and she can eat but they said she will prolly sleep today and Saturday. Maybe I can get caught up on house work.

Lost and Tired

all checked in

We are all checked in. Now we wait for 2 hours till she scheduled.

we are off to the hospital

We have been up for a while now and are leaving to go check in to the hospital

Lizze has surgery in the morning

Lizze is having a tubal in the morning. Her doctors said she would not survive another pregnancy. Also our lives won't allow for any more kids. It's bitter sweet but it's the right decision. My parents have all the kids for the next few days to give Lizze time to recover. Please keep her in your prayers tomorrow.

Lost and Tired

Excuse our mess

Please excuse our mess while we are setting up

Welcome to our new home

Welcome to the new home of Reality Autism.

Truth or dare?

So I have been toying around with the idea of opening up a little more. Being just a bit more honest about everything.  Let you all in on what it’s like to raise a child with autism or other spectrum disorder. It’s not like you see on TV most of the time. In our case it’s extremely dark and challenging.  I think I will do this in parts because honestly this will be very difficult and emotionally draining for me.

Here is my disclaimer: Gavin is no simply autistic.  He suffers from aspergers syndrome. Typically this means high functioning autism. In Gavin’s case this is not always true. Gavin is very unique in that he floats on the spectrum. This means that he can be high functioning (brushes his own teeth, dresses himself) and he can slide all the way down to low functioning (can’t dress himself, can’t brush his own teeth ect).   This is not very common at all. Gavin also has many other diagnoses. He suffers from bipolar disorder, OCD, PICA, Sensory integration disorder, PTSD, ADHD and Conduct Disorder. These obviously contribute to the over all complexity of the situation. So this situation isn’t typical.  End Disclaimer :)

Raising a child with autism or other disorder is very rough on the entire family. It is emotionally and financially draining. Every day is a constant struggle to move forward but most often it is a struggle to simply keep from regressing any further.  This takes an emotional and physical toll on everyone in the house. On the financial side of things it is almost impossible. People don’t realize that most insurance (at least in our experience and what others have shared with us) doesn’t cover autism. In Gavin’s case he is on disability. This means his medical expenses are mostly paid for by Medicaid. People like to judge those on Medicaid as lazy or irresponsible. Sometimes this may be the case but families with autistic children have no other choice. The truth is that Gavin can go through medication like water. This is because for some unknown reason Gavin metabolizes medication very quickly. So it we may go through 6 different meds or doses in a month trying to find one that works. In the past Gavin has been on $1000.00 +/month in medications alone. This doesn’t include the numerous doctors and special therapists. The typical specialist runs around $300/hr. Sometimes he is seen once per month or once per week. Sometimes he has 6 appointments in a week. For 2 years Gavin had 5 appointments per week and I am not kidding. The cost is staggering.

I have heard people make the comment (referring to Gavin’s Medicaid or SSI checks) that it must be nice to get a free ride. The reality is actually quite the opposite. There is no such thing as a free ride. Gavin being on SSI (which includes his Medicaid) is not fun. We have to sacrifice a great deal in order to keep him covered. We cannot have a savings account, retirement or even whole life insurance. We cannot have assets over a certain amount (under $5000) at any given time including our business. This means that when “things” come up we have no money.  We are self employed in order to more tightly manage our income. Running a business without capital is extremely difficult but we have stayed alive for 10 years.

The problem with this situation is that it is not possible to get out of. In order to pull Gavin off of SSI I would need to increase our gross income to $5,000 or more per month. That’s not going to happen right now. This is extremely demoralizing. I have very little hope for the future at this point. There is not financial security for us and that keeps me up at night. Trying to figure out bills is the very last thing on my mind when Gavin is psychotic and hearing voices. All you want it is to hold the crumbling pieces of your family together. It’s a balancing act that you are distained to fail. To say the system is flawed would be an understatement.

To Be Continued…………

 

Lost and Tired

Gavin, Gavin, Gavin

We can't resort to violence like spanking with Gavin (even though he has it coming at times) for a few reasons. We don't believe in spanking because there is no progression from there. Gavin will associate violence as a way of dealing with anger. The biggest reason is because Gavin witnessed his biological father beat Lizze for the first year of his life.



So we have come up with something even better and more satisfying. When Gavin makes a lot of bad choices and needs to be kinda put in his place we substitute his next meal with oatmeal. He isn't real fond of oatmeal when it plain. It's effective most of the time. He never learns from it which really makes it a pointless consequence but we have to keep trying or he will have no chance later in life.



Anyone have any other ideas they can share with the class?



Lost and Tired

Sent on the Sprint® Now Network from my BlackBerry®

Gavin, Gavin, Gavin

We can't resort to violence like spanking with Gavin (even though he has it coming at times) for a few reasons. We don't believe in spanking because there is no progression from there. Gavin will associate violence as a way of dealing with anger. The biggest reason is because Gavin witnessed his biological father beat Lizze for the first year of his life.

So we have come up with something even better and more satisfying. When Gavin makes a lot of bad choices and needs to be kinda put in his place we substitute his next meal with oatmeal. He isn't real fond of oatmeal when it plain. It's effective most of the time. He never learns from it which really makes it a pointless consequence but we have to keep trying or he will have no chance later in life.

Anyone have any other ideas they can share with the class?

Lost and Tired
Sent on the Sprint® Now Network from my BlackBerry®

The run down

Today has come and gone and where are we? Eliott Richards party was moved home from grandma and grandpa's house. Lizze and Emmett John were both sick today so we needed to change the venue.

I think it went over quite well actually. Elliott Richard was very happy and is currently exhausted.

Gavin is a different story all together. While we haven't seen any fits today we were constantly repeating ourselves. He was on the verge of being out of control all day long. Dr. R has increased the Zyprexa to 15mg in the am. He is still on 10mg at night. This is being done to hopefully silence the voices in his head. As with any med change we will have to watch him for a few days to make sure there are no side effects (especially with the increased dose).

My parents were here today and they are very supportive but I know they don't understand. We still get the looks when we correct Gavin for what may seem like no reason. We are very in tune with the way his mind works and we have learned to read the body language and know when enough is enough. I could explain over and over why we do things this way but honestly it's a waste of time and energy as no one will understand.

We have recently connected with a family through this blog. My wife and I can very much relate to this family. They face many of the same challenges we do. This is only the second time I can say for certain that someone knows what we are going through. Mark and Debbie are friends of ours from Gavin's school. They know what we go through because they go through it to. Our new friends Mandi and John are in the same boat. These are all amazing human beings and very good parents.

I am grateful because we can share our experiences with each other. It's nice to know you aren't alone isn't it.

We also have made friends with a family that isn't necessarily going through what we are but know about great sacrifice. They are a military family. Yeah I'm looking at you, Nicole and Chris. They have always been supportive as well and we truly appreciate them and the sacrifices they make to keep us safe. They have never judged us and only ever offered kinds words and prayers.

I just want to thank you all for being a part of our lives and being there for us and allowing us to be there for you.

Lost and Tired
Sent on the Sprint® Now Network from my BlackBerry®

We are celebrating Elliott Richards birthday today. We were also supposed to have Gavin's blood work done this morning. As every single day before this plans change. Gavin is having a rough morning so there is no way we would be able to get him to and from the lab without MAJOR drama. So it will have to wait because Elliott Richard deserves his special day without Gavin raining on his parade. Lizze is out of her meds so she is in extreme amounts of pain. We are waiting for the refill to be called in from pain management. Today is going to be very hard on her so adding to the chaos is not an option. Over the past few years we have had to shift from what's best for Gavin to what's best for everyone else. I know that sounds mean but it is simply the reality we live in. We have to preserve the health of the healthy. No matter how much we pour into Gavin none of it ever sticks. We make sure Gavin has all the things he needs. As I promised the other day I am uploading the slide show of Elliott Richards begining. Enjoy.

Credit needs given

With all the joy that goes along with Elliott Richards birthday something slips through the cracks.

I want to take a few minutes and thank my wife for everything she sacrificed to bring Elliott Richard in to this world in the first place. You may not know that her pregnancy was VERY complicated. She was on complete bed rest for most of the EIGHT months she FOUGHT to carry Elliott Richard. She was hospitalized quite a few times for major complications like DVT's (deep vein thrombosis) or blood clots in her leg. These were very serious because any movement on her part could have caused her to throw the clot and that could have been fatal. She endured 1550+ injections and 2000+ pills over the course of the pregnancy. She gave up all of her freedom and suffered many indignities. She never once complained not even once.

I was the big tough firefighter/paramedic who has seen it all and I was a mess much of the time. She is truly the rock in our family.

Elliott Richard is here today because of her hard work and sacrifice. Lizze you are truly an unsung hero. It's time that your song was sung. I can never thank you enough for giving me Elliott Richard. You did it with grace and dignity. You are a shining example of what a mother is. Some day I will find a way to thank you. Until then I will have to keep trying. I love you. This day is your day also.

Lost and Tired
Sent on the Sprint® Now Network from my BlackBerry®

Time goes by to fast

I couldn't sleep last night. I was trying to recover pictures off a bad hard drive for a customer. Then I was thinking about what I was doing at that time 4 years ago. I was in the delivery room waiting along with my wife for Elliott Richard's arrival. We had no idea the what we were in for.

When it finally happened I was beside myself. It was the most amazing thing I had ever seen. I lost complete control over my emotions and sobbed like a baby. Words can't do the experience justice. In that moment my entire life was forever changed.

I have made several movies to document our experience in the nicu and I watched them all last night while everyone was sleeping. Seeing him in the NICU relying on a machine to breath and having his little hands tied down (so he could pull the tube out again) puts so very many things into perspective.

I will try to upload the videos as soon as I can.

Happy birthday Elliott Richard. You have no idea how much I love you but I will spend the rest of my life trying to show you.

Lost and Tired
Sent on the Sprint® Now Network from my BlackBerry®

Pink elephant in the room

Lizze and I had a conversation today about Emmett John that we both have been putting off.

Over the past few months we have been very focused on his hearing and speech issues. We realized we have overlooked some things. Emmett John smells everything, he has started with a few repetitive motions, he doesn't talk (probably hearing related) and throws himself on the floor. He is also hitting himself in the head.

Now these could mean nothing but this is how Gavin started. These are some of the things we missed early on with Gavin. Emmett John is still very engaging and actively seeks out attention which is good. We have been pretty tunnel visioned lately and missed some of these things. His doctor had already requested that he be run through the autism clinic at the children's hospital.

Everyone has decided that we are going to pursue the hearing issue first because that makes the most sense. The other things"could" be normal for his age. Since there is a family history it increases the chances that it could be autism related.

Lost and Tired
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Birthday Fun

So we have been trying to plan Elliott Richards birthday party. We gave up on trying to get everyone there cause it will never happen. So we picked a date and time that worked best for us and decided on this Friday at noon. Gavin is off school Friday. Originally we were going to try to have it while he was at school because he doesn't do well with parties but we will just make do.

We are going to try to have something else later for those that couldn't make it. But most likely people could just come over and wish him a happy birthday when their schedules allow. I feel bad cause not many people were able to make it friday but Elliott will have a good time and that's really all that matters right now. The other reason for the time picked is because Gavin will have time to decompress afterwards before bed. We'll see how everything goes.



Lost and Tired
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Gavin update

It appears that Gavin may be getting more manic if that makes sense. This morning it appears as though the voices may be coming back. It's little things right now like "I thought you told me to do....." When we haven't even said a word or weren't even in the same room. This is how it usually begins.

Eventually it will get to the point of full blown psychosis. He will play cards with people that aren't there while having full fledged conversations back and forth with them also. When he was younger we would find him standing in our room at night "watching us sleep". It gets really creepy and honestly dangerous because we don't always know what the voices tell him to do.

We installed an alarm on his bedroom door so when he goes into or out of his room we are aware. It hleps to curb the sneaking out of his room and wandering the house.

What seems to happen is that he gets so extremely manic that he hears voices. He has hit puberty so now his meds aren't working very well. The scary thing is that it took about 4 years to get the meds right because he metabolizes them so quickly.

I realized last night that other mental health issues are starting to overcome the autism related issues we have had. They get so tangled up in each other it is extremely difficult to know what is what anymore.


Lost and Tired
Sent on the Sprint® Now Network from my BlackBerry®

..............

So its been a few days since my last post. Elliott Richard's birthday is Thursday. I can't believe its been 4 years. It feels like it was just yesterday that I would fall asleep next to Lizze at night with my arm around her and my hand on her belly. He would kick my hand all night long. I remember Lizze going on bedrest and having very, very serious complications. She spent weeks in the hospital. I remember when she developed a DVT in her leg. It was really bad because they could not find the clot and her leg had swelled up to twice the normal size. They could do very little to help her without the risk of hurting Elliott Richard. Up to that point in my life I had never been so scared.

I remember when Elliott Richard finally decided he couldn't wait anymore and was born over a month early. We were so relieved that he seemed to be ok. Then the NICU rushed in because he started having problems breathing. He was whisked away by stampede of white coats and scrubs.

We spent the next 3 weeks in the NICU while he recovered from premature lung disease, 2 collapsed lungs and pneumonia. I remember the doctors telling us that he might not make it.

I never would have believed that those few words could collapse my whole world in a single moment. I remember talks of having him air lifted to Cleveland Clinic because there wasn't much more they could do.

To this day when I smell a certain hand sanitizers I am transported back to those few weeks. I remember not being allowed to even touch him when he was crying and in pain. Watching him struggle to breath was the hardest thing I have ever had to do. I had never known true fear until then. I was a fire/medic for along time even prior to Elliott Richard. I have been in burning houses and extricated people from truly horrific car crashes. I have had guns pointed at me as well as knives pulled on me. I have seen things most people couldn't even imagine. All of these things paled in comparison to the fear I felt about loosing Elliott Richard. It was like something inside awoke for the first time the moment he took his very first breath.
Now he is happy and healthy. He is very advanced for his age according to Gavin's specialists. Time is passing much to quickly.

Lost and Tired
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Here we go...

It has already begun. Gavin had a meltdown because we caught him trying to pull one over on us. He wanted to go to the attic and get some toys under the guise of "giving it to Elliott for his birthday". I told him no for right now. He wanted to get the toys for himself and not for Elliott. Sometime I can read him like a book. I told him I know what he was trying to do and it wasn't a good choice. So he lost it because he knew he was busted. Then the "fun" began. He started smacking himself in the face and jumping up and down. This is all for show and we know that. He is choosing to do this and could stop at any point. We have proved this time and time again.

He woke up Lizze and Emmett John so I sent him to his room till lunch. I gave him many chances to calm himself. He continued to be dangerous to himself and others so I told him by continuing to do what he was doing he was choosing to. Wait 30 minutes longer for lunch. Before he finally decided to stop he rack up a total of 1 hour. So he won't get lunch till 12:30 which really isn't that late for lunch.

We are trying to give him the best chance he has at a good life. So he has to learn now that these behaviors are not socially acceptable. We are running out of time to help him. Once he gets older he will be legally accountable for these bad choices.

Lost and Tired
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The weekend

Gavin has slept most of the day like we knew he would. Zyprexa (sp?) has a sedative effect on him. What really crazy is that if you or I took that amount of this med we would be out for a very long time. Gavin just gets sleepy when its adjusted and that's it.

His body handles meds a lot different then most. He metabolizes them very quickly. That is one reason stabilizing him medically is so tough. It should be a relatively quiet weekend.

Elliott Richard turns 4 years old next week. I can't believe it has been 4 years already.

Got to start thinking about dinner.


Lost and Tired
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TGIF

We kept Gavin home from school today because he started his increased dose (double) of his anti-psychotic. This will have him sleeping for most of the day. There is no point sending him if all he will do is sleep. So hopefully by monday most of the sleepiness will be gone.

All the kids are in a mood this morning. Elliott Richard wouldn't go to sleep last night and Emmett John wouldn't stay asleep last night. So Lizze and I didn't get much sleep either (par for the course).

Maggie chewed off her bandage last night but seems to be doing ok. She ran through broken glass the other day (that someone threw into our yard) and shredded her back foot. She is doing much better now.
That's it for now..

Lost and Tired
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Quick update

This has been a really long week. We met with the school to discuss teachers. That went really well. Gavin had Dr. R yesterday. He is defiantly manic. Waiting on blood work in order to address bipolar meds.

We learned that Gavin has an actual God complex. It is part of the bipolar. He starts increased anti-psycotics in the morning. He had a rough day today so hopefully friday will be better.

Both Elliott and Emmett's sleep cycles are thrown off. They are up around 5am each morning like clockwork.

Speaking of Emmett John he goes to the children's hospital on the 29th of March for the ABR testing. We also located sign language classes for us.

Lizze is still adjusting to her meds increase but is hanging in there.

That's it for now...


Lost and Tired
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Frustrated

Its been a bit since I posted but I have just been to tired and overwhelmed. Things are about as bad as they have been. Gavin is manic and we can't get in to see his doctor till march. As a result the stress level is through the roof. He picked up a full 5 gallon water jug and tried to hurl it yesterday. He was mad because we caught him lying to us.

Lizze is really struggling with her fibro and everything that goes along with that. Pain management has doubled all of her meds so she is extremely sleepy all the time and impossible to wake up. But she is in so much pain all the time it's very difficult to watch her move around because you can see how much pain she is in. She really should be on disability we just haven't pursued it yet. It would make her treatment a lot easier. She was diagnosed by one of the top doctors in the country after exhaustive testing.

We spend most of our time at home. I really wish we had more physical help from my family. I wish my family would seek to spend time with our kids without me having to ask. No one lives more then 10 mins away. I know some are in grad school which so its understandable but not everyone is. Some do what they can but the reality is that it's not enough. We are so beaten down and have nothing left to give.

We get very little sleep because Emmett John is still adjusting to not being able to hear. Elliott Richard is waiting for school to start as soon as there is an opening for his age. He needs a better example then Gavin for social interaction. I hate the idea of him going to school because he is growing up so fast but he needs this and so it's important.

I wish I could be more confidant about our future. It's hard to see the positives in light of all the negatives. My back is in the worse shape its been in since I got hurt almost 10 years ago on a call as a fire medic. I don't know what the future holds but it doesn't feel like its going to be very good.
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TGIF

Today has been the longest ever. Everyone seems to be on edge. No one seems to be sleeping well. Emmett John appears to be getting sick again. Elliott Richard is bored and suffering from cabin fever.

Things have been sort of uneventful the past day or so. Which is good, obviously. But today went down hill pretty quick. Gavin was sitting on the couch watching TV this afternoon with us. Elliott Richard was sitting on the couch also. Next thing we know Elliott Richard is curled up nest to Gavin and Gavin has both arms around him with his hands on Elliott Richards butt. Gavin announced to everyone in the room to look at him because he was snuggling Elliott Richard and don't they look cute. We removed Elliott Richard right away ( I'm not even sure how this happened, we were right there) and pulled Gavin away and demanded to know what he was doing. We reminded him once again of the rules and he (once again) said he knew he wasn't allowed to do that but he did it anyway.

Gavin has been sent to his room and he will have no contact with anyone especially the kids until this weekend. He will eat in his room. He can use the bathroom, play with his toys and even read. He just has no contact. This is critical because if he does these things when he is older he can and will go to jail. This is the only deterrent we have left to use as nothing else works. Unfortunately he doesn't seem to be bothered by it. We'll see how Friday goes. There is no school tomorrow.

I finished rebuilding my new Intel i7 core tower this week. Finally got everything tweaked out nicely. This thing is a monster. That was a nice distraction for a bit. Lizze has been working on these medical books for the Gavin and Emmett John. We want to have all their records and medical information in one place. They each will have thick binder with all the medical history inside. This will make keeping track of things much easier. They both frequent their various specialists so this will be a big help. Elliott Richard was the one with the roughest start and he has zero health problems. This project has kept her busy for the past few days.

Please let tomorrow be easier.

Lost and Tired
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Yeah Super Bowl Commercials

This has been a rough weekend. Gavin is extremely manic. Lizze and I are losing our minds. He is all over the place. He asks the same questions over and over again. The rest of the time he doesn't make any sense.

We were supposed to celebrate my mother's and Gavin's birthday. It got moved from my parents house to my brothers house due to the snow (no where to park). We let Elliott Richard go with my sister but the rest of us stayed back. We knew Gavin wouldn't make it. We can't take any more right now so we stayed home. Gavin has had a rough day and that would have pushed him even farther over the edge. He has to be at school in the morning.

I kinda feel like people don't really understand why things have to be the way they are. It makes it harder to make these types of decisions. Ultimately we do what's best for us directly. I have to trust that everyone understand's it has nothing to do with them. But we lost my wife's adoptive family because they never understood. We have lost almost all our friends because we have to live our lives in a way were everything is black and white.

Gavin only understands black and white. The answer can only ever be yes or no. So there is no wiggle room on anything. Most people can't and/or won't understand. It makes life very lonely for all of us.

Lost and Tired
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Life goes on

Gavin seems to be going through another psychotic break. He is leaving reality behind and entering his imaginary world. He also seems manic at the same time. He has become very disorganized and very easily agitated. He has become a little "smart ass" for lack of better words. He is rude and disrespectful. It's even more frustrating because he has no idea what we have been through for him over the past 10 years. We have sacrificed everything for him. We did it cause we love him. For more info on that check out my wife's blog. http://cheerioconfessions.blogspot.com

Elliott Richard is all over the place and exhausting. Emmett John is his little partner in crime. Lizze's fibro medications aren't working anymore so they were just doubled. That means she will VERY sleepy for the next 2 weeks. Hopefully they will help to control her pain.

There are only 4 kids ahead of Emmett John on the list for the ABR test at the children's hospital. We are still looking at March but at least we know it's there.

We are about to get 12 inches of snow today so I need to go get ready.


Lost and Tired
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Overwhelmed

I have reached the point where I think I'm actually going to crack. Lizze and I both are on the far side of our limits. Lizze is in a fibro flare so bad she can't literally can’t move without tears streaming down her face. My back went out again a few days ago.


Gavin is in the middle of a manic phase. He is up all night running in circles and playing with toys. He’s losing his grip on reality. He’s back in his imaginary world. In this world he’s the ruler of 9 other worlds. He is consistently destroying the evil enemies. He says he can “smell their dark evil”. When he is in this place he can’t remember anything (he remembers even less the usual). He has no fear and an even lesser sense of right and wrong then he typically does.

Gavin has hit puberty so his meds need to be adjusted again. The problem is that it took us almost 3 or 4 years to find this dose that seemed to kind of work. He metabolizes his meds in a very strange fashion. Meds tend to only work for a VERY short time. He reaches the max limit and then has to be switched. We have a very difficult time finding a balance of meds and therapy that helps keep him grounded in reality..



Lost and Tired

It's been awhile

Nothing really new to report this weekend. Gavin was doing ok but today we have had some problems. We got Elliott a Nintendo DSi the other day.

We decided to let Gavin and Elliott play together a little today since Gavin has been doing well. We have a baby monitor in the room to hear everything and we are like 10 feet away in the next room. Apparently Gavin started having Elliott take pictures of him with his DSi. He had been whispering ( which he knows he is not allowed to do )to Elliott.

We jumped in right away only to hear Gavin say he wanted Elliott take pictures of him in his under ware.
Super creepy, right? We then took the DSi and went through the pictures and found even more creepy ones.

That put in end to the play time. Things happen even when we are right there. Later we had issues with Gavin touching Elliott (because he just wanted to) on his head. Gavin knows the rules yet chose to do it anyway. We have to be swift and severe in order to correct the problem.


Lost and Tired
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Ready to give up

Lizze just got back from taking Emmett to Dr. H to make sure Emmett John didn't have an ear infection. He has been pulling on his ears and digging into them and we wanted to make sure everything is ok.

His ears are clean and the tubes are clear. So it looks like Emmett John is trying to figure out why everything is silent. We think his hearing loss has been gradual. He is probably loosing the rest of it now. We know that he can no longer hear us. It's so hard to know this and be able to do nothing to stop it.

I don't want to hear how it could be worse. I assumed I had been watching him see and hear things for the first time. Now I wonder if he has ever heard my voice. Has he ever heard me tell him I love him? Now I sign it and hope he will understand.

I don't know if its harder on us or him. He will probably never know the difference but that doesn't make it any easier. I just want the best for him. He had enough of a challenge living with his autistic brother.

We still haven't gotten our appointment for the ABR test. Dr. H is going to try to push things along. We should have one by Monday. This test will tell us how bad the hearing loss actually is. we meet with the lady to begin his services next week. They will help us get him on disability as that will open up many doors for him. We will get into sign language classes. He will start speech therapy ASAP so he can learn to communicate.

All this aside it is our hope that he is in no discomfort.

Lost and Heartbroken
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Nothing New

Today was relatively uneventful. Gavin goes to see the pediatric neurologist in the morning. We will have to devide and conquer, again.


Lost and Tired
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Weekend wrap up

Going to bed early. Lizze is staying up for a bit but I have had it. Gavin has no school Monday so that's going to be exciting.
Tax return is Friday and we can order a new mattress. Can't decide between Temperpedic and the mattress factory.

Hopefully this week goes quickly.....


Lost and Tired
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A Break

Emmett John was up screaming all night again. In a desperate attempt to survive I sent out a has text to my family for help. Most everyone was working today and my dad had a funeral.

I did get a call for Jon. Brian, Jon and Teri came and picked up Elliott Richard for a few hours. Everyone got a break today for a while.

Thanks guys....

Lost and Tired
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