New location

We have moved: http://lostandtired.com is our new home. Please check me out there.

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

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

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

Thanks

LT

Maybe we aren't so different.

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

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

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

LT

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Back in limbo

Well we don't know anymore then what we did before today. He has a speech disorder for sure. He does parallel play. But we are not really any closer to the diagnosis. We have picked up a geneticist, GI specialist, OT and Speech. That's what I remember anyways. She wants a full genetic work up to figure out what's going on.

She doesn't know where he falls on the spectrum. She wants to make sure we don't label any wrong. So basically she said he clearly has a speech disorder and he parallel plays. However, he has good eye contact and engages socially which is good. That's all I can remember. Lizze will probably post a more detailed post on her blog.

Thanks to all for the thoughts and prayers.

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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I want a do-over for today

So I go to my mailbox and get a letter from the bank that we over drafted. So I log in to my account to see what happened. I looked over the account and ALL activity. I should have never over drafted. I was never over my limit at all. The over draft or should I say over drafts (4 total) however have caused lots of over drafts themselves.

I have a call into the bank and I'm sure they will figure it out but until then I have lots of money but it looks like this. "$ -xxx.xx". :(

At least they didn't screw up the business account.

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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

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Camp Day 1

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

LT

Day camp....

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

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

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

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Sleepy Me

Finally getting some sleep.

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

A bit of relief........

Last night was pretty nice. I finally got to take something for my back. Some pain killers,muscle relaxers and motrin. I was out by 7:30pm. I haven't taken anything for my back for a really long time. I slept on the couch and at some point I ended up with ER draped across my legs. I kept trying to shake him off cause - though he was Maggie. I slept in and it was great. I woke up to Gavin having a meltdown over something I can't remember. But it was still nice to not hurt even just for a little while. Thanks honey.

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

Can Collic Show Up Now?

It's almost 3am and EJ stopped screaming. We brought him downstairs and moved ER back up stairs. I started up a playlist on the TV and he settled down to the music. He acts like he did when he had collic after he was born. I need to find out if it can reappear later on down the road, like now.

ER woke up cause of the screaming and snuggled down with me on the couch and is sleeping again. I'm so tired .

Thank you for sharing our lives. LT

No Sleep

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

Thank you for sharing our lives. LT

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

Elliott Richard: sensory issues?

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

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

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

LT

Thank you for sharing our lives. LT

Rough day

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

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

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

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

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

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

Have a great night..

LT

Thank you for sharing our lives. LT

Longer Nights

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

LT

Long nights

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


LT

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.

No More Secrets.

I am so tired of the secrets and drama. Our lives are tough enough without you making things worse. Perhaps the best way to end this, is to simply air this. I will no longer keep your secrets. This is my response to Lizze's biological mother. Who injected herself into our lives of her own free will, only to cause us a tremendous amount of heartache and stress. She chose this path. Her email is in response to my post yesterday about Lizze's health. Her email is unedited I only removed the header to conceal her address.  -------------

Rob,

For your information I gave Lizze all the medical information I had the first time she contacted me.

My father was one of twelve. To the best of my knowledge, and it is the only knowledge I have, the predominant medical conditions were cancers in many forms and heart conditions.

None of my nieces or nephews has any of the problems your boys seem to be suffering and no one has the problems Lizze has.

I gave her all the medical information I had at the time of her birth concerning her sperm donor. I have not kept in touch with him per our agreement for my not having an abortion.

After 30+ years perhaps things have changed medically for them as they have in my own family but I have no way of knowing that.

My decisions remain as they are and will remain so for the remainder of my life. I chose to give Lizze life rather than abort her. That is the bottom line. She is alive perhaps you can find a way to see that as a blessing. I'm sorry for the inconvenience of her testing but many of us  suffer the same way.

---------------------------------------------------

This is my response. I have not addressed this issue until now. I am choosing to do it this way so nothing I say can be twisted and manipulated into something it's not. I truly don't think there is another way to put this to rest. My wife and kids deserve to be defended.

------------------

Mary,

I don't know how you live your life like this.  Everything you just said in your email were things we are hearing for the first time. You never told us any of that information before. In fact you said there wasn't anything major at all. So how are we to believe you now?  What gives you the right to play with people's lives the way you do? You chose to inject yourself into our lives. We welcomed you but respected your boundaries at all times.  You befriended and then betrayed my children. What kind of person does that, especially to special needs kids? What is wrong with you? Yes, I'm grateful you didn't kill or "abort" my wife. But what kind of person even says something like that? This agreement you refer to is new information. You said her father didn't know about her.

My wife, YOUR DAUGHTER, is suffering and in constant physical pain every day. They can't figure out what is wrong. My children, YOUR GRANDCHILDREN, are suffering. I would die for anyone of them. I have given up everything I have in order to ease their suffering. I desperately wish their was more that I could do, but I can't fix these things no matter how hard I try. I don't believe I'm a "narcissist" as you have put it. Just because I put my family first doesn't mean I have an agenda or do it for show. It's called being a father and a husband. However, you are entitled to your opinion.  I don't understand what would possess you to withhold information that that could make things easier for them? You called her testing an "inconvenience".  What kind of "Mother" and I use that term loosely, puts herself before her children? What kind of "Grandmother" and I use that term loosely, puts herself before the health and wellbeing of her grandchildren? What Lizze is living through is not just an "inconvenience". She is in pain and you are a selfish coward for saying that but that is just my opinion and I'm also entitled to it.

The only thing Lizze EVER,EVER asked of you was the truth. She didn't need YOU, just the truth. She needed it to help Gavin.  Perhaps your over inflated sense of self worth clouded your judgment. Let me make this VERY CLEAR to you. WE DO NOT NEED YOU. We invited you into our lives because you were family. We had no expectations for you. We are and were grateful that you made the choice to give Lizze up for adoption. Not one person EVER looked down on you for that except maybe yourself.

We know you set us up with Trisha and John. Why did you want to pit us against each other? Trisha and John aren't perfect parents and they have made mistakes but so have we. We aren't perfect parents either. There is no such thing as a perfect parent. You are a great example of that. You used our fear, vulnerability to exploit a situation to your advantage. What kind of sick pleasure do you get out torturing your children? What's worse, without a thought you did this to your grandchildren. They are innocent and should be treated as such. Why do you not want us to be happy? Why do you want to keep adding turmoil to our fragile lives?

You are clearily battling demons of your own creation. You have spun a web of lies through out your life and are now confusing them with reality. Everything is falling apart around you and now everyone knows the truth. I actually pity you. I hope you don't let this whole thing destroy you. You should know we never judged you, not one time. Despite your paranoia, we were never out to get you. We respected you and appreciated you for who you were. We never asked anything of you. Gavin loved you unconditionally also. Now he is left to wonder what he did wrong, again. He will carry this burden for a long time because autistic kids are much more sensitive and don't understand.

My entire family accepted you with open arms into the family. Everyone of them are grateful you made the choices you did back then. Our lives are so fragile and your actions have had a very negative impact on us. It didn't have to be that way. Feel free to continue to read our blogs and observe our lives from the outside because you will NEVER have the privilege of viewing them form the inside again. I'm truly sad to know that my kids will never know you. I'm sad that the kids (and subsequently their families) you gave up for adoption are forever being punished for your paranoia. Is the truth something you really need to take to the grave, as you put it. I pray that we never find ourselves in a life or death situation that only the true medical information can help. I hope you are proud of your choice to "take that to the grave". That is something I will never understand. Perhaps that's because I'm not like you.

I'm not an extremely religious person but I truly believe you will have to answer to  God for your actions and he is the only one in a position to judge you. I pray he is more forgiving then I am. We will continue to pray for you. If I have to see a silver lining in this, it would be that we are finding our way back to the church. Lizze and I look forward to meeting with our priest and discussing many things. Amongst them, how to help move our family forward. We also look forward to renewing our wedding vows at church in front of our family and friends. Sadly you won't be counted among them. Despite your efforts to derail our relationship with her sisters and NEWLY discovered brother, I know they will prevail. They are not like you and I'm truly grateful for that. I don't believe we will ever get the truth from you. I don't even think you know what the truth is anymore.

So this is over....

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

Emmett John Update

Today we finished all of EJ's paperwork. He is now qualified as MRDD. I wasn't expecting that today. That really kinda kicks you right in the gut to hear that. On the positive side that does give us FSS funding to make the house safer and provide for the sensory needs.
Each step we take that gets us closer to the final diagnosis just makes everything all that more real. It's one thing to know something but it's another thing to "KNOW" something. If that makes any sense. I don't think there is any way to actually prepare for the moment of truth that is around the corner. I wouldn't wish this on anyone.

If you are a parent of typical kids don't ever take that for granted it can be taken away when you least expect it even if you do everything right.

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

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....

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

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.

Leak fixed: Mission Accomplished

Fixed the leak. But have to pull it apart in the morning cause I forgot to tape the threads.

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.

It's Raining Up In Here

So we got up this morning and trying to get things done when we notice it's raining on us. So what, you say. Well the problem is that I happen to be standing in my freaking kitchen. The leak in the bath tub faucet upstairs apparently has decided to become worse through out the night. Now it's leaking through the kitchen ceiling. When it rains it pours....

Rob

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

Medications and Complications

As the day goes by Gavin's demeanor is more and more concerning. He's actually doing pretty well, save for the occasional meltdown. The problem is he seems to be almost asleep on his feet. This is really weird because he is dropping down on some of the meds right now. He wasn't sleepy on the higher doses. He is like a walking zombie. I know I keep saying that but that's the only way I can think to describe it.

Not only is he out of it but he is physically carrying himself odd. He seems more stiff or contorted then usual. He isn't always making much sense when he is talking. He is also being very dramatic about any type of physical contact. That leads me to believe he is also on sensory overload. The only way we really have to help him with that also seems like a punishment. We have to send him to his room where everything is quiet. He can read or play quietly until he feels more relaxed. That's all we have to really offer him right now. Unfortunately, the other kids, especially Emmett John don't pick up or understand Gavin's limitations. They just want to play with him.

We have a call into Dr. R and we should hear back early this week. Not sure if this new meds regime is going to work.

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

Love runs deeper than autism.

Lizze has had a really rough day today. Emmett John tried to make mommy feel better. Very sweet...

Autism Effecting Elliott Richard

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

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

LT

I wish life had a reset button

So I sent my invoices from our contracting company to Ryan Homes today cause they were due. In the email I also wanted to double check that they had received my auto insurance renewal cert.. They never received it. That's a little bit of a problem because now they have put a hold on our payments. Like the one we had been waiting for next week. My insurance company faxed it today but it's to late now. Everything has been delayed till May 22nd.

This also makes payroll impossible. I'm going to try to get an exception on this but it probably won't happen.
During the slow times I only have my brother working for me. So I was able to get his payroll covered (thanks to mom and dad) but the buck stops here. I left a message last week with my agent to remind them to fax it to the corporate office. They didn't get the message I guess. I have been to distracted and didn't follow up like I should have. I really wish things could get just a little bit easier. I would be happy to just catch a break.

LT

A moment of peace

I could live in these moments forever. Emmett John is peaceful and resting. I cherish moments like these...


LT

Autism and Emmett John

Emmett John finished his first evaluation yesterday. He completely failed the evaluation. That's not good. He is now being referred to a pediatric neurologist and from there to the autism clinic to try to pin point his location on the spectrum.

The more questions we answer, the closer we get to an official diagnosis and the more painful this becomes. Now it's another tortuous waiting game.

LT

A little bit of peace

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

LT

I need a mute button

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

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

LT

Autism, Autism and More Autism

The "Help Me Grow" people are coming out again today to continue Emmett John's evaluation. The more time that goes by the it looks like Emmett John will not escape the diagnosis.

He doesn't talk yet. All he can do is grunt and squeal (very loud). He has become more aggressive towards Elliott Richard and Lizze. Emmett John hits Elliott Richard for no apparent reason. He also claws up Lizze's face actually breaking the skin. She has scratches in various stages of healing on her chin and cheeks.

I don't know why he does any of this. I think maybe he is just frustrated because he can't communicate with us so he lashes out. I don't know why he targets those two only but it's getting old.

Lizze and I are both completely worn out and have nothing left. Some how we manage to get out of bed in the morning and get things going but that's where the productivity ends. There are so many things that need to be done to this house but it comes down to money and energy, of which we have none.
I wish there were more agencies out there to help families like ours. We always fall into that grey area where there is little to no help.

The truth is that things just seem to keep getting more difficult to manage. I feel like I'm being crushed under this weight. I even dream about being crushed or drowning in the middle of the ocean. That tells me I'm pretty stressed out and overwhelmed.

Not sure how I'm going to pull this off. Sometimes I really think our only chance is a miracle.

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

Is it Monday yet?

Gavin has just been impossible today. I'm pretty sure he's doing some (at the very least) on purpose.

I had him take a shower. I reminded him that he needs to wash his hair and then "rinse" it about 3 times while I was setting up the shower. I also told him to was his body and "rinse" it about 3 times as well. Then I reminded him again that he needs to "dry" his body and hair prior to getting dressed.

Gavin exits the shower and his clothes are sticking to him and his hair is dripping wet. I made him go back 2 times to dry his hair and body. Then we come to realize that he never rinsed his hair.

He's also begun targeting Lizze when I am not around. He hasn't so much physically targeted her it's more verbal. This has been the longest day ever. I'm so glad it's school in the morning...


LT

Autism and "The Failing Parent"

While this is really a direct response to my wife's post earlier (see below) it applies to most of us.

Lizze,

I want to say a few things in response to your "Bad Mother" post. I want you to know that in almost every conceivable way I agree with what you had to say with one big exception. You feel like a bad mother, well I feel like a terrible father. The reality is that you are a great mother despite how you may feel sometimes. You give up everything for our kids. No one on this planet knows more then I do how much pain you push through everyday for our kids.

Gavin has no idea what he's saying most of the time. He works kinda like a slip'n slide. Anything, any words, any thoughts that happen to pop into his head just slips right out of his mouth. He doesn't care how it effects anyone because most if the time he doesn't even realize he has said anything wrong. Other times he hides behind that so he can say whatever he wants. To say it's a constant struggle would be understatement.

I think that the major flaw in how we both feel at times is that we base our feelings of failure on Gavin's current state and how it effects us. We need to both realize that we have no control over how Gavin is doing or how what he is doing makes us feel. We both love him very much but he is exhausting, frustrating and unsettling to be around anymore.

I think it would be unusual for us not to have these feelings of failure and or guilt. It's part of what makes us good parents. The fact that Gavin can no longer come first is dictated not by our feelings but by the fact that we have other children that must come first. As all of the experts have told us very little we do has any impact on him. We love him and we have given him everything we could. We will continue to do the same forever but our priorities have had to shift.

Gavin makes choices that endanger himself and those around him. He is sexually aggressive and violent. We have to protect his younger brothers as well as ourselves. That doesn't mean we are failing him or giving up on him.

Everyday I truly believe God has way more faith in me then I have in myself. I often wonder why I was picked for this job. We walk a very fine line everyday. I quite often feel like I'm losing my mind but some how I always find it. As parents to a special needs child or children our journey through life will challenging on a good day. We will find ourselves very alone because only truly special people will walk with us on the journey and those special people will be few.
However, there will be joy and happiness along the way.

There are very few people who can parent a special needs child. We are definitely in the minority. It takes incredible strength, courage and an extreme amount of selflessness to do what we are doing.

As traumatic as this journey can be I just don't trust anyone else to do it. We were hand picked to be his parents. There are many times I question and ask "why me, why us" but we will never find that answer.

My point in all of this is that we cannot base our success or failure as a parent on Gavin. Nothing we do is ever going to make him better. His condition is not a reflection on what we have done wrong. We continue to love and care for him no matter how challenging, disrespectful and destructive he is. He is our child and nothing will change that.

LT

A very honest post....

My wife just posted this to her blog. I just read it and I am sure we can all relate in some way. It is a very honest post and a really good read.
-----------------
I am not a good mother. I'm not. I hate to burst your bubble. I hate to tell you something you don't want to know. But it's true.

I. Am. Not. A. Good. Mother.

I try. God, how I try. But it's

so hard. To say that Gavin can push my buttons without even trying...is an understatement. Then when he

does try to push my buttons...it's enough to drive me insane. To say that I'm stressed out and over-whelmed...is a gross understatement. To say that they 

all try to push my buttons...it drives me to the brink

Read the rest at the link below:

http://dailymommysurvival.wordpress.com/

Autism and Bipolar

As you are all aware of Gavin is autistic. Gavin is also bipolar and about 7 other comorbidities. Right now we are really struggling with him because his bipolar meds are no longer effective. It seems like a cruel twist of fate that these kids that struggle so much with autism as it is that they are also burdened with comorbidities like bipolar.

In my experience with this I have found this to significantly complicate matters. You treat one and it causes the other to be more difficult to manage. Gavin, for example doesn't do well with adhd meds. So we can't help him much with that. His bipolar has become extremely tough to manage. He no longer responds to most bipolar meds. All we have left to try is lithium. If that doesn't work I have no clue what we will do next. Kids like Gavin tend to rapid cycle when their bipolar is not properly managed.

Gavin is manic right now so he is all over the place. He is driving us all crazy right now. We all understand it's not his fault but that doesn't change the impact his actions have on the entire family. We should hear about med changes today. It's going to be a long weekend.

LT

A Gavin Update

Gavin had a good day at school but really struggled at home. He is starting to treat Lizze quite poorly. That will have to stop as I won't stand for that, period. He is starting to get creepy again. He is all over the place and talks about things that don't make a whole lot of sense.

Clearly the bipolar meds aren't working and he is rapid cycling again. He does that when the meds are off. I'm not happy about the med changes coming but I fear it's a necessary evil.

On a side note Lizze reviewed the "Shark Steam Pocket" for the Cleveland Examiner. If you haven't already done so you should check it out. Also subscribe to her page and get email updates when new articles post. Her topic typically will be about autism, fibromyalgia. Occasionally she is going to be reviewing things we have found that makes our lives a bit easier. Stop by if you get a chance, I know she would appreciate some feedback.

http://tinyurl.com/y4veowl

LT

A parent of autism

I've been a parent to an autistic child for about 9 years. I've been through it all before so I should know what to expect but I don't.

For some reason it feels like the first time again. All the uncertainty, fear and feelings of guilt have all come back. I wonder what I did wrong. I ask myself what I should have done differently.

I have also begun bargaining with God. Later the anger with God will kick in for what is happening to Emmett John. The fear of whether or not it is regressive like Gavin's is smacking me in the face.

LT

Mentally preparing for today.

In 2 hours Emmett John will begin his evaluation for autism. Up to this point it has all been speculation so we really didn't have anything to deal with emotionally. After today however, things will be made much more real. As much as I try I just don't see us coming out the other side of the tunnel without a diagnosis somewhere on the spectrum.

The more we watch Emmett John the more it appears to be spectrum related. He smells everything, food and non-food items. The fits and the inability to talk are big ones also. As a father I just want him to be ok. As father that has been through hell and back over the past 10 years with Gavin, I want to put a name to what this is so we know how to attack it. I want Emmett John to have a fighting chance at life. I have been sick to my stomach all day anticipating this afternoon.

I have been cleaning the house and mopping the floors. All of which it pointless but it expends my nervous energy. Lizze's new medical news from earlier hasn't even hit me yet. I'm sure it will after they are gone today and I can sit down and breathe.

Unfortunately, I'll be missing most of the evaluation because I have to pick up Gavin from school. Lizze is very good with this kind of thing so everything will be ok.

LT

More health issues

Lizze just got back from the doctor. They want to do a sleep study now because they think she is narcoleptic. This is because she falls asleep right in the middle of doing something. I just assumed she was tired but apparently the meds she is on shouldn't be causing the sleeping stuff. So for now we are waiting for her MRI at the end of the month and the phone call to tell us when the sleep study is.

on the plus side she seems to be writing a lot. Writing really helps her to escape all of this for a little bit.

LT

Autism Awareness Month

As you are all aware this is Autism Awareness Month. I would like to know why I don't see or hear anything about it in my area. I live in northeast ohio and there has been nothing.

Maybe it's just because it has struck my family that I am more aware but I would have thought I would have seen ribbons or signs or even hear something on the news or radio. Admittedly, I can't be everywhere and hear everything but it's been to quite. I hear dozens and dozens of times a day how someone found some stupid lost animal in Farmville or someone found a lost egg. Where are our priorities.

It actually makes me angry that this month seems to be slipping by unnoticed. I wish there was something I could do to raise awareness. I'm going to have to think about this and try to figure out a way to raise awareness every month.

Autism is such a serious problem that maybe we should have more then just one month. There should always be awareness. Honestly, awareness isn't enough we need action and results.

LT

Autism and "The Blended Family". An unpleasant truth.

Disclaimer: This is not an easy subject for me to talk about. I have daily emotional struggles with this. I hope this helps someone else.

As you may know we are a blended family.  I have raised Gavin since he was 15 months. I'm the only father he has ever really known. I never really looked at Gavin any different then my own kids.  The unpleasant truth for me is that it is different. I love Gavin, I always have and I always will. However, there is something different on a very basic human level.  I was there from the beginning with Elliott Richard and Emmett John. I heard their heart beat for the first time and I cried. When I saw them for the first time during the ultrasounds I cried again.

I have felt a deep sense of guilt because my wife was adopted and has very strong feelings on the issue (and understandably so). Some day maybe I'll get into some of the things my wife has been through. Or if you can't wait till then you can always read for yourself at her blog.

I have found that as time goes on that difference becomes bigger and bigger. I first realized this when Elliott Richard was about 6 months old and Gavin literally kicked him across the floor for touching his foot. It's that paternal instinct to protect my own, regardless of where the threat comes from. I have found myself having to protect Elliott Richard, Emmett John and Lizze from Gavin on countless occasions. I really can't explain how it feels to realize this.

I have admitted this to all his doctors and they all insist that this is normal because there is no biological connection. If I really break it down even more is it because the Gavin I used to know died a long time ago. I know that sounds really bad but Gavin has the regressive form of autism. He wasn't always like this. I can't remember the exact day that it happened but I swear he went to bed fine and then woke up different. What is left of Gavin is a shell of who he was. Between the bipolar, autism and the almost dozen other diagnoses he just isn't there anymore. So maybe I feel like I'm living with an aggressive and often violent stranger.

Everyday I watch Elliott Richard try to connect with his "big brother" and get rebuffed. It's so painful to watch Elliott Richard walk away crying because Gavin just tunes him out. Really, it's not Gavin's fault either but that doesn't lessen the impact it has. Elliott Richard certainly doesn't understand that. So I guess the truth is that our blended family really struggles with this issue. We all love Gavin very much but at the same time we all struggle everyday to live with him.

admitting this isn't an easy thing to do. My hope is that my truth will help others to talk about and share their feelings and personal experience with this issue.

Lizze's migraine

As I have mentioned before Lizze suffers from migraines. She has migraines almost daily. Meds don't work to prevent or treat them either. She just got back from her new neurologist she has through pain management and he is categorizing her as basicly disabled. She is having an MRI in 2 weeks to rule out a tumor but her cat scans have always been clear. This may be related to the fibro.

I guess when you have migraines for more then 14 days out of the month and they don't respond to meds it's considered disabling. I didn't realize that. I knew it was bad but not that bad. He has also striped her diet of anything with tyramine ( I think that's what it was) in it. My mom is on the gluten free diet cause she has celiac and this appears worse then that. I didn't expect this. I thought maybe they would increase her Topamax or something. Good thing we haven't gone shopping yet.

LT

300 Questions

Lizze and I have been working on a 300 question intake for the autism clinic for Emmett John. We didn't realize just how many things Emmett John wasn't doing until we started answering these question. Actually is was really depressing to realize this. I guess it's becoming more and more real as we go on.
We stopped last night on question 171. We are doing to finish it tonight so we can turn it in ASAP.


LT

I launched my new business website..

I had big issues trying to migrate our business website to a new host. As a result I had to start from scratch. I have been fixing computers for many years. I have worked for Microsoft for about 12 years now. My last project I worked on was Windows 7. I have been using Windows 7 for a few years now.

After I destroyed my back while I was a firefighter/paramedic I needed a way to continue to provide for our family. As our family life became more "complicated" and my back continued to get worse we decided to pursue the computer repairs (that I was doing for everyone anyway) and grow it into a home business. Things have slowed down since Emmett John came along really because our attention has been so divided.

Things are getting tougher so I decided to more aggressively pursue new business. I wanted to migrate our website to a new host but that ended in disaster. So I had to start over from scratch. I finally published it the other day and thought I would share it with you guys. Be nice because it is a work in progress :) www.computerrenew.org


Thanks

LT

A great article on Vaccines and Autism

I found this article today while doing some research. I thought it was a good read. I'm not sure who wrote it.

The article can be found here: (or read below)

http://articles.sfgate.com/2010-02-07/opinion/17848204_1_andrew-wakefield-vaccines-autism

A reality check on autism and vaccines
February 07, 2010

Many worried and angry parents of an autistic child believe that vaccines may cause the disease. But it's pure myth - disproved by numerous studies and now a final slap from a British journal disowning a report that started the dangerous nonsense.

Will these parents accept reality - and allow their children to receive shots against a dozen or more illnesses? And will fringe groups that play to fears of autism give up their indefensible claims?

The answers can't come soon enough for public health experts. Vaccination rates, while generally high, have shown dips partly because parents are citing the notion of vaccine dangers in skipping shots for their children.

Smallpox and polio have been virtually eradicated thanks to vaccines. But whooping cough, pertussis and measles - all but stamped out years ago - can reappear via unvaccinated patients.

A law that allows parents to opt out of school-required shots has raised the worry level. This so-called exemption rate statewide is 2 percent, but it was 6.3 percent in Marin County and 5.8 percent in Sonoma County in 2008, according to the state Department of Health Services. Vaccine "denialism" has become a public health issue.

In the case of autism, a sketchy study by British physician Andrew Wakefield in 1998 set the vaccine blame game in motion. He claimed that a combined measles, mumps and rubella inoculation given to infants was linked to the disease, and his findings were published by a prominent British medical journal the Lancet.

But follow-up research by other teams failed to match his results. In recent years, his study fell apart amid charges of dishonesty, violations of research ethics and a "callous disregard" for the 12 children involved in the research. The Lancet disavowal this past week capped the collapse. How does he feel about the wholesale discrediting of his work? The findings are "unfounded and unjust," he said.

The damage will be hard to undo. Autism, a range of conditions that disrupts communication skills and social interaction, has grown in reported numbers as parents and doctors learned to recognize its symptoms. Nearly 1 in 100 American children is diagnosed with autism or a related condition.

Without any effective treatment - or even a clear understanding of the causes of the disease - parents are primed to be impatient with slow research results and look for villains.

The Wakefield study provided an easy and dramatic message: Shots cause autism. Avoid vaccines and save your child from the troubling condition. It's a scientific fact confirmed by a doctor. His findings expanded on other, equally ungrounded fears about other contaminants in vaccines.

But it was pure quackery. Public health experts fought the message but were savaged by anti-vaccine forces as flunkies of drug companies. Fringe medical figures had a field day, stoking the fears of worried parents desperate for an answer. Hollywood celebrity Jenny McCarthy, the mother of an autistic child, pushed the claims on talk shows and through a foundation she founded. This past week she continued to defend the discredited vaccine study.

The rejection of Wakefield's published work is way overdue. Also overdue are similar rejections from anti-vaccine groups and leaders like McCarthy who are deluding desperate parents with autistic children and leading others to disregard vaccines. Too much money and time has gone into countering these ill-founded claims instead being directed toward research and reliable treatments for autism.

Disposing of a flawed theory on autism is one issue. But there's another that may be harder to end: a disregard for science. That may be the ultimate casualty of a misguided hunt for an answer to autism.

Little victories with a big impact

Emmett John learned to high 5 today. Up to now when I would hold out my hand to high 5 him he would simply put his face or head in my hand. It was kind of our little thing. But today he started actually high 5'n me. He was so excited and I was so excited. We high 5'd all day today. It the seemly little things that have the biggest impact.

LT

How do you handle holidays

When you have a child like Gavin and now possibly Emmett John how do you handle certain situations that typical children need to experience.

Over the years we have learned that Gavin CANNOT handle even mildly stressful situations. He does not handle birthdays well for example. It is way to stimulating. He will be impossible to control for days afterwards sometimes. So we have learned that Gavin just can't have birthday parties. So we have adjust them so that people kind of filter through over the course of the week and he seems to handle that better. Also if we do have a small low key gathering for him (which again is rare) we have it at someone else's house. The reason for that is because we can physically leave the party behind. He seems to respond better to that then having something at home.

This works out well until you have other "typical" kids. Now you have to figure out how to give your "typical" child what he/she deserves and CAN handle without overwhelming the other. We have really struggled with trying to find that balance. Elliott Richard is old enough now that he wants to have people around for his birthday. What do you do when what's best for one is the worst possible thing for the other?

When Gavin gets over stimulated he will meltdown, and I mean meltdown. That tends to put a damper on the day. But if we remove Gavin prior then he feels left out and then we have problems there. It's very difficult to strike a balance. We don't want Elliott Richard to have to give up any more then he has to. His life is already going to be challenging enough with everything going on.

We find that going to families house for Christmas or now Easter usually ends in disaster. Do we split up the family for the holidays and someone stay back with Gavin? Our family always says he fine and they can help but we have to live with him at home.

How have you guys handled situations like this?

LT

Little Victories

Well as far as victories go we never have many. Yesterday though Gavin had a perfect day at school. Even after forgetting his backpack. This almost never happens and it happened on aday we really needed it to.

The rest of the day with Gavin was good until after dinner when he really struggled but in fairness to Gavin the emotional level in the house was very high. So all things considered he had a really good day.

He went to school this morning with a good attitude and said he was going to have an awesome day.

Here's to hoping..

LT

Children's Hospital here we come....

As you may or may not be aware Emmett John has an appt. at the Children's Hospital in the morning. It appears that Emmett John is profoundly deaf. He has been to the audiologist and failed the test. Although he wouldn't let her but anything in his ears. He didn't respond in any, way, shape or form to ANY of the test they did complete. She said he can't hear anything 45db of lower (human voice) and most likely couldn't hear anything below 65db. She said he was at least moderately hearing impaired but probably profoundly deaf. However, because he wouldn't go along with the rest of the testing she couldn't say for sure.

In the morning he is scheduled for an ABR test. He will be sedated and they will do pretty much the same hearing test only they will monitor his brain activity to see if his brain can even process sound. It's the definitive test for hearing loss. So we will finally know for sure in the morning. We have been waiting 3 months for this test.

We have been teaching him and ourselves sing language. Lizze made it her mission to learn as much as she can. She is teaching me some basic things until we get into some classes. We have all the services lined up for him in the event we need them.

I don't really know what I think right now. I have been trying to hold off feeling one way or other because it's just to hard to imagine him never hearing my voice. It's very clear that he has hearing loss. VERY rarely does he respond to us when we try to get his attention. Sometimes he will be he may just be able to hear a noise in a general direction. I really don't think he is processing the sounds. He has never said a single word. He grunts when angry or upset and the rest of the time just kind of babbles.

He past his hearing test at birth we know that. We also know he had ear infection after ear infection. Some were resistant to antibiotics. He had tubes put in last year and that ended the infections. However, we learned that the ENT that did the surgery never tested his hearing before or after his surgery. His tubes are clean so that isn't the problem. We think that most likely it has been a gradual thing.

Either way we will find away to make it through. Since we have been using sign language (about 3 months) he has been much happier. He was so frustrated before because he couldn't communicate with us. So he would lash out or just through a fit. He doesn't really sign yet but he understands basic signs now which has helped a lot.

Since Emmett John has been sick the past week we were affraid this was going to drag out even longer but he seems to be doing better. The hospital says as long as he is coughing a lot in his sleep it should be fine. So we should find out for sure in the morning what is going on with his hearing.


Lost and Tired

To help put things into perspective........

I thought I would post this.  This is the letter I wrote  to the judge about Gavin's adoption.  I know the content of this blog is not uplifting very often so I thought I would share this letter I wrote to the judge. Things weren't always this bad. I often return to this letter to help me put things into perspective......... 

I removed any identifying information.......

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What does it mean to be a father?

I have been asked the question, Why do I want to adopt Gavin?

This should be very simple to answer but it is not.  There is so much going on in our lives that I do not really know how to answer this question anymore.  In truth I have been working on this letter for quite some time. There is so much joy and pain involved in writing this.  I wanted to take my time and do right by Gavin, so here it goes.

Let me start by introducing myself, I am Rob.  I am almost 30 years old today. I am a husband of 5 years to my amazing wife Lizze and a father to my two miracle babies Elliott Richard (2 years) and Emmett John (7 weeks).  I met Lizze a few months before September 11, 2001.  I was at the tail end of paramedic school and about to suffer a major, life changing back injury. We met each other while walking our dogs at the park. There was a connection right away.  We waited a while before I met Gavin. 

The first time I met him was at Meldrum’s, a restaurant in Mas.......  I met them there for dinner.  Gavin and I bonded instantly.  This was uncommon for him as he was very shy. While we sat there coloring and waiting for our food he spilled an entire glass of ice cold lemonade in my lap.  Lizze thought for sure I was gone after that.  I never really told her but that was the moment I fell in love with her.  We were married about 2 years later.

Since the day I met Gavin I have taken responsibility for every aspect of his life. Not because I had to, because I wanted to.  Lizze and I have raised him together since then. 

What does it mean to be a father?

I would like to introduce you to Gavin now.  Gavin is 8 years and 7 months today.  He is a sweet, compassionate, loving and selfless little boy whom I’ve had the privilege of raising as my own since he was about 1 1/2 years old.  Gavin loves to build with his Lego’s and draw his comic books. Gavin has been through more in his short time on this Earth then most people will in a life time. He has been the middle of a tug of war for almost 8 years.  We have fought very hard to shield him from this, insure his best interests and to get him the help he needs, which most recently included a DNA case in S.....County Family Court against Gavin’s biological father and paternal grandmother; which was triggered by Gavin’s doctors.

Gavin was diagnosed with Asperger’s syndrome in 2005 by Dr. Lee....lds and A....Children’s Hospital. Asperger’s is a form of Autism. Gavin has also been diagnosed with PTSD, ADHD, OCD, and Sensory Integration Disorder. Recently we have been treating him for bipolar disorder as well. Every day is literally a struggle to survive.  Gavin is emotionally about 3 years of age. We live in a world where Gavin “melts down” over everything. As he gets bigger and stronger he is getting much more difficult to manage. Words cannot describe how difficult this summer has been.  He was extremely difficult to manage and has more recently become very violent.  Gavin hurts himself when he gets angry or frustrated.  He is very dangerous to be around when he is raging. We have built our lives around Gavin’s needs. Meeting Gavin’s needs requires great sacrifice from all of us.  We have involved every available means of support in order meet his needs.  This is extremely difficult to do because what’s best for Gavin is rarely what’s best for Emmett and Elliott. Finding a balance that allows us to keep everyone safe is very challenging.

We have once again begun discussing a residential treatment program for medical stabilization with his doctors because we have to ensure the safety of everyone in the house, including Gavin. When things are out of his control, he panics and lashes out but he would never hurt anyone on purpose. That being said, when he lashes out and melts down, anyone and anything in his path will be collateral damage. We have been working with Dr. Patti ........and Dr. R....ds (for years) to try to stabilize him.  For several years we were taking Gavin to 5 or 6 appointments per week.

His Doctors have told us many times that we have done everything that we can possibly do for him.  They constantly re-assure us and help us get up back up when things get really bad and we begin to doubt ourselves. We have found a very delicate balance in our lives that has allowed us to tread water.  This balance has required great sacrifice on our part. Gavin can rarely be taken anywhere because of his behaviors. We need multiple baby sitters if Lizze and I ever leave to go anywhere (which rarely happens). He has no real friends because he cannot connect with other children and because it isn’t safe for them. He struggles with most social situations and really struggles with expressing himself. We do our best to provide him with a safe environment where ever he goes. We do all of this and more for him while still keeping the best interests of our other 2 children at the forefront of our minds. Things are extremely difficult but we pull together as a family and we push forward because no one gets left behind. Elliott in many ways has become Gavin’s “big brother”. We have worked so hard to give Gavin a chance to live a quality life and reach his potential. We have found him a great school.  He attends S....... Academy.  Every one of the teachers and staff are angels. They have made such a difference in his life as well as our own. Lizze and I are very active in the school as she is the president of the PTA. All of this has helped manage the situation but as terrible as it sounds the Gavin we knew died many years ago.  What is left is a little boy who is lost in his own imagination. A little boy who rarely makes any real connections with anyone. A child who struggles in every aspect of his life. We no longer live in the same place at the same time, if that makes sense.

I cannot begin to describe the pain of losing a child to Autism. I catch myself thinking back to when he was little. I try to remember if there was something I missed. Have I failed him? What could I have done differently? I always come to the same one wish.  I wish I could go back to when he was 2 or 3 and I took him fishing for the first time at Pr.... Park.  He caught a blue gill all by himself.  He was so proud and so happy that day.  That is the day I always return to. That was one the best and worst days of my life all at the same time. It was great because we had so much fun and I was so proud of him. We were connected that day. We were in the same place at the same time. It was the worst day because that was the last day I can remember we had like that. He began slipping away after that (although we were not sure why at the time). I wish I could go back and make that day last just a little while longer.  I wish I would have known that would be one of the last times we would have to spend together in that place. That place where we were connected and he knew I loved him. I wish I could have said goodbye.  It seems like the next day I woke up and everything was different.  I am really struggling to write this because I try not to think about those days because I cannot stop crying. It hurts to cry anymore.  I miss him so much. 

Even though I live with him every day we are not connected the same way anymore.  Gavin likes to spend his time alone in his room working on his Lego inventions with his imaginary friends.  That seems to make him happy.  We are told that Gavin does not perceive things like we do.  I often wonder if he knows how much we love him.  We tell him all the time but I do not think he gets it.   We constantly worry about his future.  We worry about everything.

Probably the most difficult part about this whole thing is we know he is still in there.  Every once in a while we get a glimpse of him. It’s like he’s trapped inside the fog but sometimes he fights his way through and we get our little boy back.  These glimpses last only a few moments and before you realize it they are gone.  Patti (Dr.....) calls it the Swiss cheese effect.  Sometimes all the holes line up and we can see through.  We live for those moments. They are few and far between.

 I love Gavin for who he is and morn for who he was.  I would never try to change him to fit a mold. I try to guide him though his journey as safely as possible. I have been there for him through everything.  I have been there for all the nightmares, meltdowns and injuries.  I have also been there for all the little victories like brushing his teeth and getting himself dressed for school.  I was there for all his karate awards and school plays.  I have been to all his appointments and to pick him up from school. I have made sure the tooth fairy does not forget to visit.  I make sure he has clothes to wear, food to eat, and a roof over his head.  I make sure that the spaghetti sauce does not have any “specks” in it because I know he will not eat it if he sees “specks” of seasoning. I make sure our house is as safe for him as possible. I gave up my career so I could work out of my house because Gavin requires Lizze and me both to be there.  I sold most of my possessions so I could give him what he needs. I have made countless sacrifices in my life so I could meet his needs better and be there for him. I live each and every day in constant physical pain because of my back injury but I push through it because my wife and children need me to. We have gone bankrupt in the process. The only help we ever receive is from our families and Gavin’s amazing doctors and teachers. These people amaze us because they don’t have to get into the trenches with us but they do anyway because Gavin has touched their lives. We have received no help from his biological father. Gavin’s father is an alcoholic and a drug addict.  He has shown up to court in S...... County twice over the legal limit and has 2 DUI’s. He has yet to our knowledge completed any drug and alcohol counseling and or treatment.  He also did not complete his DNA case plan after almost 2years. This is why Jobs and Families finally moved to terminate their involvement (because of his lack of cooperation).  We voluntarily chose to enter into an agreement with his father and grandmother.  This agreement put Gavin’s doctor’s in charge of their visitation (specifically Dr. Mi.....).  This legally binding agreement is on file in S..... County.

This will be my second adoption attempt.  The first time Judge P... granted the adoption. It was appealed and overturned. We then went to the state supreme court only to lose again. The Ohio Supreme Court did not hear our case, thereby upholding the ruling of the Fifth District Court of Appeals.  Gavin’s father and paternal grandmother fought feverishly to get the adoption over turned and succeeded in taking it away. But here we are almost four years have gone by and not a single child support payment has been made.  In fact, they have not had any type of contact with Gavin in well over a year.  Lizze and Patti (Dr. Mi...) decided to move their supervised visits to the Ma....... YWCA because it was a better fit for Gavin and his special needs. It was more of a therapeutic environment and they would help Gavin’s biological father and paternal grandmother learn how to interact with Gavin appropriately. They refused to show up at the visits as a “matter of principle” because they do not believe they need to be supervised.  They allowed pride and principle to separate them from Gavin. Nick then received his 2^nd DUI, went to jail and the visits stopped all together. At no time did we ever discourage them from seeing him or him from wanting to see them. To this day, Gavin’s father still has yet to set up his visits at the Ma...... YWCA.

We have recently been drug into court in Mu........ County to face contempt charges claiming we were “not allowing Pam (Gavin’s paternal grandmother) to exercise her visitation”. We have been following the S....... County Court Order to the letter (an order we all – myself, my wife, Gavin’s biological father and paternal grandmother – agreed to follow and signed). We were found in contempt for doing so by Mu......... County court and my wife now faces jail time if she does not turn him over.  We have the full support of all Gavin’s doctors in perusing this adoption again. Our lives are so fragile and Gavin’s is even more so.  All we want is to be a family and move on as best we can.

 Granting this adoption will allow us to do just that, move on and live as a family.  Fundamentally nothing will change because I am the only father figure he has ever known.  I am the one he goes to when he is scared. I am the one that shields him from all of this needless court drama. I have seen him through all the broken promises and missed visits. We have made up countless excuses for why his biological father and grandmother will not come to see him.  All while ensuring Gavin that it’s not his fault.  We tell him they have “homework” to do before they see him at the new visitation.  For a while he would ask us why they weren’t doing their homework.  Eventually he stopped asking and now rarely ever mentions them anymore. Believe it or not that’s heart breaking for me as father. God has given him many challenges in life already, he doesn’t need this one.

Nothing will change the fact that I am his father, even though he calls me his “Robby”.  I have never encouraged him to call me dad because that’s just a name and it means nothing. I know what he means when he calls me “his Robby”. No matter what happens I will still be here doing the same things I have been doing for 7 years, along with my wife. I will never be one of those who abandon him, never.  I will be here waiting patiently for the next time Gavin finds his way through the fog.  I will try to reach out and grab his hand and hold on to him for that moment because it is so precious.  I will try very hard to remember to ask him if he’s happy, if he knows we love him and how lucky we are to have him. I just need to know he is happy with his life, that he knows how much I love him and how proud I am to be a part of his life. I want him to know if there was a way I could take all of this away from him I would. Sadly, I know I cannot take this burden from him but I will walk by his side through his entire journey. I absolutely believe that if anyone can rise above these difficulties it will be Gavin and I will be here for him no matter what happens.

I humbly ask, please grant Gavin and me this adoption and help me to put this all behind us. Please help me give Gavin the stability and consistency that he so desperately needs and deserves. Please help us give him a fighting chance.

Respectfully,

Lost and Tired

terrible, horrible, no good very bad day!!!

This day has gone on forever. It was crappy to start with and it ended crappy. All three of the kids are sick, Elliott Richard and Emmett John have puked at least 2 times each today. Gavin is being weird even for Gavin. This doesn't make me feel good about the upcoming weekend.

Lizze and I are both stressed to the max. We are both grouchy and irritable. Not a good combination right now. I hate the tension in this house. Something has got to give and give soon. I don't know how much more we can go through. We are both at our breaking point.

We are both tired of waiting for Emmett John's ABR test that's scheduled for this Monday. The past 3 months wait has been killing us. We will find out for sure Monday if Emmett John can or cannot hear. At this point I have no idea what is going on with him. I just want to find out so we can finally move forward again.

I feel like we have been stuck in this rut forever now and can't seem to get any traction. Lizze and I both do our best but it just never seems to be enough.

Lost and Tired

illness is like the energizer bunny.....it keeps going and going.....

Well after our fun at the doctors the other day we found ourselves back there again. This time it was Elliott Richard (again) and Gavin. Elliott Richard's respiratory infection has gotten to the point that he is puking from all the coughing. Gavin just has the same nasty cough. Elliott Richard's antibiotics we changed to something stronger. Gavin is on the the same antibiotic as Emmett John.

No sooner does Lizze get home from the doctors then Emmett John just pukes all over the kitchen floor. I can see this is going to be a fun night.

Lost and Tired

Anyone out there looking for a nice video camera?

 I just put up our video camera on ebay to help generate some funds.  If you are interested or know someone who might be check our my ebay auction.  If not well that's cool to.

http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&item=200454571997

Thanks

Lost and Tired

Medication follow up.

We received a call from Gavin's doctor tonight. The blood work came back and we have to raise Gavin's depakote again. He now takes 1000mg in the am and 500mg in the pm. This doubles his morning dose. We go back in a week for blood work and medication tweaking. I'm pretty sure we are getting close to the ceiling on this med.

I would just like to thank puberty for screwing with his already complicated body chemistry.... t took us years to find this combination of meds that worked. Now we may have to start over because I don't believe we can go much higher.  Looks like we may need t get back on the medication rollercoaster.

Lost and Tired

Lost and Tired

AAAAHHHHHH!!!!

Gavin had an interesting day. By interesting I mean bad. I am becoming more frustrated with Gavin's school situation as a whole.

We get a summary of his day, every day. They use moon's as the behavior grading system. Full moon is great and new moon is bad. So when we ask Gavin how his day was he says "8 full moons" as an example.

We have been struggling with this because it doesn't appear to be very accurate. Gavin was sent to the principles office again today (this has become a daily occurrence) because he was out of control. He missed all of reading class because of his behavior. He received a 3/4 moon for a class he didn't even attend. Are they grading on a curve? On what planet does that qualify as a 3/4 moon.

Maybe I'm being strict or expecting to much from Gavin but in my opinion any day he is sent to the principles office is a BAD day. He goes to the principles office at least once a day for behavioral issues. I don't understand how that helps him. If he gets sent to the office during a class because of choices he has made then that should be a "new moon". Right?

I mean as he gets older he won't be able to get away with the things he gets away with now. Our stance is that his only real chance (ha ha that rhymes) is to ride him pretty hard now to curb the behavioral issues. No one is going to be understanding when he's older and still doing these things. Does any of this make sense? He will simply go to jail.

I don't know how to get the school to grasp this concept. It's pretty simple in my opinion. There has to be natural consequences and realistic expectations. Gavin's therapist is having a meeting with the school next week to clear up any confusion as to what his capabilities are.

I'm not going to hold me breath. I will probably just continue to bang my head into the wall out of frustration until this is resolved.

Lost and Tired

Back to the doc's

Deja vo? We are back to the doc's again. This time with Emmett John and Elliott Richard. Both have a temp and very wet cough.


Lost and Tired

At the doc's with Gavin continued

Gavin was very nervous while waiting. We get back there and he just starts screaming and he doesn't stop screaming until everyone has left the room. Everyone felt bad for him. I on the other hand was irritated with him. Is that wrong? I was the only one who knew it was just drama not really fear. If he was truly afraid then I was wrong. It was just so dramatic and as soon as they left it shut off. So there it is. A trip to get blood work done. On the plus side it only took 3 people to get the job done. It has taken 9 people in the past.

Now we just wait for the results and see what the next move is going to be.

Lost and Tired

What life is like: part 4

As I have said before raising a child like Gavin is nothing short of a challenge. What most people don't know is the toll takes on your marriage. The divorce rate for couples with an autistic child is about 80-85%. When you figure that Gavin's autism is just one of 8 different disorders that certainly adds to the strain. On top of that, the divorce rate for blended families is about 70%.

We fall into both categories. I adopted Gavin after an 9 year long court battle. So we are a blended family. So the reality is that the odds are not in our favor. Add to that financial strain and other health issues and they sometimes seem like insurmountable odds.

Lizze and I have always said that no one would have ever matched us up on purpose because we are just to different. Their have been many times along the way that those differences have reared their ugly heads. One would think that the 9 year court battle with her abusive and drug addicted ex husband would have destroyed us long ago. It destroyed us financially and physically in a lot of ways. We accrued $50,000+ fighting to protect Gavin. Her ex husband never paid ANY child support and ran up debt in my wife's name including social security fraud. Along the way we went bankrupt because I couldn't cover these debts and he never paid anything he was supposed to.

Physically we both were effected by chronic stress. Lizze developed fibromyalgia and everything that goes along with that. We both are trying to deal with PTSD and depression. We only just got rid of him once and for all this past December. The court of appeals ruled that the previous courts had abused its power and we were released from all the previous orders.

This was a HUGE relief but at the same time it's really stressful because that was all we knew for so long. We don't really know how to put our lives together and move forward.

I realize I have been off topic a little but I have a point I promise. All of these things combined make our future looks bleak. However, Lizze and I have survived for 9 years despite these challenges. I don't really know how we do it. Neither one of us are quitters and we love each other. I can say that for most couples that wouldn't be enough. We take it one day at a time. That's really all we can do. Our marriage is very strong despite the 90% failure rate. I guess we are just in the minority.

If you know someone like us remember they need all the help they can get. They could use some time to themselves. Maybe dinner and a movie every once in a while. You could offer to watch the kids just to give them a break. Families like ours need love and support not judgement and persecution. After all, we already have enough working against us.


Lost and Tired