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Blogger isn’t going to work. So never mind.
Blogger isn’t going to work. So wordpress it is. I’ll self host at a later date.
My wife has a new examiner article up.
My wife has a new article up at the examiner.com. Please give her a click. It’s a great article and each click helps pay the bills and support our family. Here is the short link: Cleveland Examiner.com.
Thanks
LT
Posted without proper editing tools from my Blackberry.
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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Random Emmett John
Emmett John is hiding from me. Do you know where he is?
LT
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Toy Story 3 and the aspergers child
We just got back and the movie was good. Gavin would have never have made it through the first 20 mins. Way to intense for an aspergers child with anxiety issues. We have been doing this for so long now we look at each other at the same time and say Gavin would be freaking out right now.
As a special needs parent knowing your child’s limitations become second. We don’t even realize we are doing it most of the time. I think it’s one of those things nature adds to our pile of resources. Lizze and I both knew we made a good choice to send Gavin somewhere else after the movie was done. Elliott Richard and Emmett John were fine. Er made it through the whole movie and wanted to go again. EJ got tired the last 10 minutes or so. Gavin would not have made it at all. Maybe when it comes out on Blu-Ray he can watch it. If he’s sitting at home where he knows he’s safe he might be ok. We’ll cross that bridge when we get there.
Just be careful if your thinking of taking your aspergers or high anxiety child to the movie. It gets pretty intense and I know it would have been way to much for our aspy. Great movie just not very sensory friendly.
LT
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Toy Story 3 here we come
We are off to see Toy Story 3. Gavin is on his way with Grandpa to go visit Great Grandma Gene. Gavin cannot sit through a movie at the theater (probably a sensory related thing) so it really is unfair of us to make him go just so we can all do something as a family. He’ll have a blast with Grandpa so I don’t feel so bad.
Maybe I’ll try to get him to a dollar movie this summer and see how he does. I would love to see a movie with him again. The last one we went to was “Over The Hedge” and Gavin was freaked out by the “hedge” not the scary bear. We get up and leave every time. But I like trying every once in a while because he really wants to go. He just can’t handle it.
Anyways I’ll let you know how it goes with a 4year old and a 2 year old.
LT
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Long night
Elliott fell asleep awhile ago but I just can’t get comfortable on this couch. Watching the fish hoping to fall asleep but it’s not working. You get to a point when you are so tired but yo can’t sleep. Sounds funny but it’s true.
Good night, hopefully
LT
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Finally asleep
Finally asleep. He’s finally asleep. Thank God.
LT
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Weekend Update
Well today has come and gone and I find myself on the couch with Elliott Richard. He has been struggling tonight. I think his allergies are raging right now. Lizze ran out to get some allergy meds.
Emmett John had a low key birthday. No one called or stopped by. We are going to Toy Story 3 on Sunday. Gavin is going to visit Great Grandma Gene. Gavin won’t sit through the movie so it works out well. Gavin actually had a pretty good day.
Lizze and I took turns sleeping today. Doesn’t look like tonight is going to be any better.
LT
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Happy Birthday Emmett John
In about an hour and a half (1.5hrs) Emmett John will turn 2. While our journey thus far has been challenging to say the least. It has also be wonderful beyond words.
At this time 2 years ago the NICU team was arriving and everyone was getting ready. Lizze and I were terrified something was going to happen like it did with Elliott Richard. Everything went smooth and Emmett John came into this world perfectly. My amazing wife spent 8 months on bedrest to keep him safe. This is her day as well.
Happy Birrthday Emmett John. I love you.
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What did you have for dinner?
-Disclaimer for Trisha- don’t read this if you are going to be eating. I guess that would apply to all.
So Gavin has been having GI issues. Dr. H has us keeping tabs every time he goes potty. We have to see it before he flushes. We also keep a food log of what he’s eating as well.
Gavin had another GI “episode” today. So I asked him if he has been eating anything that we haven’t given him to eat? He began nervously pacing so I knew this wasn’t going to be good. So I start questioning him. What are you eating? He says “nothing”. Eventually he says he has been eating paper. So we start the process again. What else have you been eating, I asked? “Nothing” he says, just paper. Later he tells us he is eating the tags off his stuffed animals. We do the exact same process one last time and learn he is still eating the stuff between his toes.
We were forced to gut his room. All he will have in there is him bed,pillow and blanket. We also found he had been eating some of his blankets so we got rid of those as well. I don’t know what the hell we are supposed to do. The scary thing is that these are the only things we got him to admit to. There are also large amount of paint missing off his walls and baseboard (not lead based). We need a “clean room” to stick him in. There is no way we can stay on top of him constantly, which he apparently needs.
I feel bad removing all his things be we have to protect him from himself. Gavin has no real quality of life. We have to control everything because he can’t be allowed to endanger himself. Right? Should we let him do what he is going to probably do anyway? Should we let him get sick and need his stomach pumped? Does he have control over this or is he just doing this to push me and his mother over the edge? Honestly I don’t know.
Anyone have experience with pica? Can we discourage this some how? Should he be punished for doing this? I have no idea what we should do.
LT
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Gavin Update
I got both of my little men in bed and sleeping. Lizze is with Gavin at Dr. R’s. Hopefully we will have some idea of what is going on with him. I’m waiting for them to get back.
Will update as I get the information.
LT
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Racing thoughts……
I came up stairs to go to bed and EJ is peacefully sleeping. In the next few hours he will most likely start screaming. I wish I knew what was wrong. I wish he could tell us.
I wonder if he will ever speak. If he does, what will his first word be? Sometimes the pain is just to much to bear. I wish the rest of the world would understand what this is like. I be happy if just the part of the world I crossed paths with understood.
I wish bill collectors would understand that things are really rough for my family at the moment and stop asking for money I don’t have to give them. I wish there was a visible sign I could wear that would show everyone that I’m barely holding it together right now so please be kind to me.
There is a movie called “powder” the kid as the power to make people feel what you are feeling. I wish I had that power sometimes. It would help other to better understand the constant emotional roller coaster that is Autism.
Right now I just wish I could stop thinking and worrying about tomorrow long enough to sleep…
LT
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Speechless
Our good friends Deb and Marc posted this to my facebook page. I don’t what to say about it. I haven’t stopped crying yet. I wanted to share this with everyone and thank Deb and Marc for their unconditional love and support. They are truly the definition of friend.
This truly portrays what being an AU parent feels like. All I could think about was our little Emmett John. This puts into words what I feel every day. Please pass this video along and spread Autism Awareness…..
Thank you..
Gavin Update
Well we finally got an appt for Gavin to see the doctor. He goes tomorrow night. I really hope they can help us figure out what is going on with him. Today walked into a wall as I passed him in the hall way. I have no idea what to expect when we go.
Maybe it’s medication related but I doubt it. I’m paranoid sometimes that we don’t feed him enough. But his doctors all say he is good. We have to restrict him because he can’t regulate himself. It doesn’t feel good to deny your child food even if it’s in their best interest.
Hopefully we will have more information tomorrow night to pass along. Until then we will just buckle down and make it through as we always do.
LT
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FYI
Hey guys just wanted to let you know that if you read some off topic posts it’s because it an getting paid to review some site and things like that. I kind of feel like I’m doing a disservice to this blog and topic but we really need the income. I thought I would be honest and let you know what was going on. You may not even notice the posts cause I will try to blend them in pretty well.
Thanks for the understanding and support.
LT
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We need to find a van…
We used to drive a nice Saturn L200 but honestly it was to small.  We were without a car when we lost it. My aunt and uncle gave us a Kia Sportage and that got a through some tough times. When the electrical system went completely nuts (apparently a known and non-repairable condition) we had to finally put her to rest. We are very grateful and lucky to have such generous family.  Then my parents fixed up their Chevy Lumina and gave that to us. We are currently still driving that. However, with the behavioral issues some of our kids have (namely Gavin) we have safety issues to worry about. So we are in the market for a new or nicely used mini-van. We have found that the pilot seats work out really well. The kids stay separated and are still easily accessible. Everyone has their space and we can even safely bring Maggie along for the ride.
Right now it’s honestly probably smarter to start thinking about making the move. I have some pending repairs that will need to be done in the near future. I looked a few of them up to get an idea of the cost involved and I found this site called http://repairpal.com. I searched for things like timing belt and found this http://repairpal.com/timing-belt-replacement. Then I looked up water pump and found http://repairpal.com/water-pump-replacement. This is pretty cool because this site kind of breaks things down for you and helps you to estimate the cost and find a shop to have it done. Computers are my thing not cars so this was a nice find.
Then I actually started playing around with the site and they even have car reviews, kind of like epinions.com where regular people write the reviews based on personal experience. For example you could look up ford escort and find this http://repairpal.com/ford-escort-2001. In my case I used it t check out my future van the chevy venture it actually got great reviews http://repairpal.com/chevrolet-venture-2005.
Anyone out there have any experience with mini vans? Please share because we really do need to make the move this summer.
LT
Today has been……
Today has been challenging. I woke up this morning and realized that I used the wrong debit card yesterday while at the hospital. That is a $120 mistake. I’m also looking for a new bank now so if anyone has advise let me know.
Gavin was at the doctors for the infection on his hand. He came home and slept for 5 hours. Very weird.
It’s so hot on the 2nd floor of our house. The first floor is air conditioned and nice. I need to figure something out because I don’t want the kids to get sick. I got fans but there is no relief. I may have to put off the chipper (for the trees we just took down) for a week and look at another window air conditioner for the 2nd floor.
On the business side of things I started advertising on Facebook and Google. I’ve placed like 200,000 ads for $6 out of pocket. Look up Computer Re-New on Facebook and “Fan” us. Let me know what you think of the site also http://www.computerrenew.org. I look forward to your thoughts and ideas.
Have a good night.
LT
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and the day ends in oatmeal…
Gavin did not have a good day. He had oatmeal for lunch and then threw it away so he had oatmeal for dinner. He drags it out so that he runs out of time and then throws it away. We need to figure a second tier of the punishment when he doesn’t eat it.
Anyone have any ideas? Remember rewards don’t work for him. Someone had made the suggestion to have a reward available at the end of each day if he earns it. If he doesn’t earn it the his next chance is the following day. I also have a behavioral contract on my mind but don’t know if he would even understand what he was signing.
Ideas?
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Lost and Tired 