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
Sunday, May 30, 2010
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 .
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
Saturday, May 29, 2010
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
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
Friday, May 28, 2010
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"....
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
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
Thursday, May 27, 2010
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
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
Wednesday, May 26, 2010
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
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
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
Monday, May 24, 2010
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
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
LT
Friday, May 21, 2010
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.
[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,
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....
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....
Thursday, May 20, 2010
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
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
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
Monday, May 17, 2010
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
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
LT
Wednesday, May 12, 2010
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 whà t I can do now.
LT
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 whà t I can do now.
LT
Tuesday, May 11, 2010
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.
Thursday, May 6, 2010
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....
Wednesday, May 5, 2010
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
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
Tuesday, May 4, 2010
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.
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.
Monday, May 3, 2010
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.
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
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
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
Sunday, May 2, 2010
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
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
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
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