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

Posted with WordPress for BlackBerry.

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

Posted with WordPress for BlackBerry.

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

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

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

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

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

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.

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

Love runs deeper than autism.

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

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