It's been awhile

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

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

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

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


Lost and Tired
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Ready to give up

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

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

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

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

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

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

Lost and Heartbroken
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Nothing New

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


Lost and Tired
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Weekend wrap up

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

Hopefully this week goes quickly.....


Lost and Tired
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A Break

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

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

Thanks guys....

Lost and Tired
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What are we supposed to do?

Emmett John is really starting to struggle with his challenges. The past few night he wakes up hysterical. It takes hours to get him to settle down. Still learning sign language. Slowly.


Lost and Tired
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So far so good

Lizze has an appointment now and I am home with the kids. Gavin is having a great day and is napping. Elliott Richard is in our room watching Noggin. Emmett John is sleeping in the office.

I'm buried under 2 dogs playing worms 2 on the 360. So far so good.


Lost and Tired
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Emmett John

On the Emmett John front we made some progress.
He has finally begun using some of the signs we are teaching him. He signed "daddy" last night. It was amazing!!!

We won't get into the children's hospital until March. His ped. Is working to get him in quicker.


Lost and Tired
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School's out

We went to pick up Gavin from school expecting the worst. We pick him up and find he had a perfect day after the meltdown when he first got there.

We are both floored by this. Honestly I expected the worst day ever.

Good job making great choices Gavin. Hopefully it carries thru the weekend.

Lost and Tired

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Major Eruption

So today is jeans day at Gavin's school. Gavin doesn't like jean so we got permission for him to wear his tan cargo pants. Gavin came down this morning in some camouflage pants. He can't wear those because the bother some of the other kids (it's a pattern thing).

All I did was explain that to him and he exploded. it was so bad that Elliott Richard wet himself and the dog wet the floor. He also broke a stair tread on his way upstairs. I went up after him to calm him down which was a waste of time and precious energy. I showed him the pants he was allowed to wear. I also told him if he didn't control himself that he would wear his regular school pants to school.

Gavin didn't actually earn his jeans day because of the week he has had but he was grandfathered in because it wasn't announced until after the worst part of the week.

Anyway, Gavin ended up wearing regular pants to school and was not happy about it. So Lizze drove him to school and met with the teachers to explain. They thanked us for holding him accountable. The talk was cut short because Gavin started screaming at the teachers aide. You could hear him from all the way down the hall saround the corner and down the steps.

I don't know how much more I have left for him.


Lost and Tired
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Heartbroken

I am laying next to Emmett John singing to him and he keeps digging at his ears.  Then he takes my finger and puts it in his ear.  It was like he was say "daddy please fix my ears". I cried...

Another Day

Gavin had a pretty good morning all things considered. Lizze and I are trying to keep it together in light of all we have going on.

We keep wondering what happened. He passed his hearing test when he was born. What happened between now and then to cause his hearing loss?
There are 2 likely possibilities as to what happened. The first one is that the first test was wrong when he was born. The second is the constant ear infections. All we know for sure is his tube are not blocked and he doesn't have an ear infection now.

If the next test comes back and confirms the first test then we will know the extent. I really think this is just one of those things that happen and there may not be an explanation. That being said I still wonder if we missed something along the way. Hopefully we will get some answers really soon.

For now it's like torture until we know more.


Lost and Tired
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Coping?

How are you supposed to cope with any of this stuff. As a parent I feel like a complete failure, like I missed something. How does this even happen. I have so many questions. Has Emmett John ever heard my voice? Did we do something wrong? I'm trying to remain focused on helping him but I feel helpless. I can't imagine going through life not being able to hear. We have been learning sign language the past few weeks and Lizze is really all over it.  We are going to get Emmett John in therapy so he can learn sign language also and have a way to communicate with us. Please keep him in your prayers.


Lost and Tired

Today's entertainment

Emmett John and Gavin both have their appts right now. We split up and I took Gavin while she took Emmett John to the audiologist to find out more about his hearing problems.

Sitting here I just realized Gavin is due for a few shots. This is a very difficult task to complete. It goes something like this.

"In this corner weighing in at 75lbs and not wanting shots is Gavin. And in this corner we have 1 doctor,5 nurses and dad collectively weighing in at close to 3/4 tons". While a little dramatic that's actually how it goes. It usually takes 5 people to administer his shots because he is fighting so hard.

The nurse just left and it looks like he is only getting the getting the flu mist. Yeah....

Lizze just walked in from the hearing test. Emmett John didn't really cooperate with the doctor but she says he at least has moderate hearing loss. She couldn't see if his ear drums were moving cause he wouldn't let her look. He didn't respond to any of the noise tests. Apparently he responded to one but she isn't sure if he responded to the sound or the light.

So now we wait for the AVR test at the children's hospital. They sedate him and do the same test while measuring his brain waves to see if his brain is even processing the sound. It doesn't look good though.


Lost and Tired
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Post meltdown report

Last night Gavin had a 45min meltdown.  It was very similar to the ones we were having 8 monthes ago. I let him go because I didn't want to give him any attention and reward his behavior.  I reminded him of the rules. Stay away from the windows. He can only scream into his pillow and stop his feet on his mattress. He finally gave up and finished reading and then went to bed. I really wish we didn't have to go through all of that just to get him to do his work.
He woke up this morning in a "wonderful" mood. Today should be interesting to say the least.
While this may seem like alot already, my thoughts are on Emmett John.  We will find out today if he can hear. The collective opinion is that he is profoundly deaf.  These tests that start today will give us more insight. I trully hope that we are wrong.  Emmett John is going to have enough of a challenge growing up with all of this stuff going on around him.
We think what caused the hearing loss was the constant ear infections he had before the tubes were put in his ears.. Some of the infections were severe and wouldn't respond to antibiotics.  We had the tubes put in as soon as possible.  He was on extremely powerful antibiotics to clear up the last  infection cause nothing else would work. These types of antibiotics can cause permenent hearing loss as will the infections themselves.
Elliott Richard woke up this morning not feeling good. Today is turning into a divide and conquer type of day.
Hopefully Elliott Richard just ate something that didn't agree with him and he's not getting sick.  Elliott Richard is like me. I never get sick (knock on wood) but when I do I end up in the hospital.

Hopefully today will run smoothly and everthing will be ok with Emmett John.......

Lost and Tired

Send me an angel.....right now

No sooner did Lizze leave with my parents for a meeting with Patti when Gavin completely lost it.  He is upstairs screeming for 30 mins now because he couldn't manipulate me into allowing him to go to bed instead of finishing his reading. He has gotten used to these meltdowns getting him out of things at school. Well guess what. That's not going to work here and the problem will be corrected at school. We usually pick our battles but this one I think is worth fighting.  He has to learn that he cannot resort to violence when he doesn't get his way.
 This is insane. The entire house is shaking.  I put on Monsters Inc for the kids and that drowns out the screaming.  This is the dark side autism. Violent rages that will only get worse now that peuberty has started.


Lost and Tired

Today is another day.....

As I predicted last night, this morning was loads of fun. I think we 3 meltdowns this morning. I am hoping he has a decent day at school because I think his teachers are starting to catch on. This is when we are going to be having trouble because he can no longer manipulate his way through the day. Now he is being held accountable for his disruptions and behavioral issues. This is great news because he needs things to be as consistant as possible. We will have to see what transpires at 3pm today...


Rob

Cycling

Gavin appears to be cycling again. Just check on him and he was dancing and singing in the dark in his room.. I predict an interesting day tomorrow..



Rob
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When will it end?

They say God never gives you more then you can handle. I think God is over estimating our abilities just a bit. We are already drowning with Gavin. Now it appears that Emmett John is profoundly deaf.
http://en.wikipedia.org/wiki/Hearing_impairment

This means that he only hears certain frequencies. He is scheduled for the audiologist on Wednesday. He is also going to the children's hospital for a hearing test where they sedate him and administer sounds and then measure brain waves to see if he even processes sound.

He is also going to go through the autism clinic because he still cannot talk and the family history (though no one thinks he is autistic).

We have been teaching Emmett and ourselves sign language because he has no other way to communicate with us. For now its a waiting game until he is tested and we get the results.

Lost and Tired
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Gavin's "sick"

As I stated prior Gavin turns 10 in the morning. This morning started with a "tummy ache". This is a difficult situation to manage because Gavin tends to have "stomach aches" when he doesn't get his way. He has learned to use them as a manipulation tool to get something he wants or get out of something he doesn't want to do.

It is sometimes hard to tell the difference between sick and manipulation. Today his tummy "conveniently" hurt. It seem to come and go depending on the situation. We made him stay in bed for a good part of the day for two reasons. We wanted him to learn a lesson if he was faking and get some rest if he wasn't.

He said he was going to "puke" this morning so we had him skip breakfast, just in case. He had a bowl of homemade veggie soup for lunch and then wanted a bunch of junk food. He came down after quiet time and felt better. Then before dinner he said he was going to "puke". I found him hugging the toilet. The problem with this is he will make himself throw up because he thinks he needs to. So I made him lay back down.

About an hour later he wanted to come down and watch me play Halo Wars on the 360. Shortly after he went up stairs and "puked". He was gone for maybe 2 minutes. He came down with a smile and was ready to eat dinner. We told him if he really just got sick then he needs to stay away from food and go lay down.

How are we suppose to know for sure when he's sick and when he's something else. We don't want him to think we don't believe him but the reality is we don't. I know I sound terrible saying that but he had cried wolf so many times. There's always an angle. I wish it was easier to know the difference.

Well tomorrow is a new day and his birthday. Happy birthday Gavin. We love you.

Lost and Tired
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Makeover

I have to thank my beautiful and amazing wife for helping me set this blog up. Be sure to check her out at http//:cheerioconfessions.blogspot.com


Thanks Honey




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Little breaks

Gavin had an ok day today. No major fits to speak of. My mom called and wanted to pick Gavin up and take him for a while. He was gone for a few hours and I got Elliott to take a nap.

Later on Elliott had dinner with my parents and my sister. Everyone went to bed on time.

Lizze is sleeping on the couch and I am watching Black Hawk Down. Hopefully sunday is just as smooth...



Lost and Tired
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The weeks end

A lot has happened this week. Gavin's trip to the children's hospital
for his heart went very well. Right now we have nothing to worry
about right now. We will re-check next year.

We also met with his psychiatrist yesterday. He had the sex talk with
Gavin. Oh, I forgot, Gavin started puberty prior to his tenth
birthday. He turns 10 on Monday.
We have a very small window in which to curb his sexually aggressive
behaviors. Dr. R said we have to embarrass Gavin when we catch him
doing these things. He said its the only way we will be able to
discourage the behavior. If we aren't successful in correcting this
behavior he WILL become a predator.

We haven't seen him do anything yet so we haven't tried this. I feel
bad knowing what we are going to have to do to him. But it appears to
be the only way. Nothing else has been effective. He needs to know
that we know what he is doing.

Tuesday we are going to have a meeting with Patti and our family to
bring everyone up to speed and address anyones questions or concerns.
Yeah..

Lost and Tired

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Long weekend

We were graced with a snow day yesterday and so this is a very long
weekend for us. Gavin actually did pretty good yesterday. While we
had some issues it was manageable.

Today we were supposed to go to my parents for family pictures. As
usual that didn't work out for us. My wife is still sick and Emmett is
also.

We discovered that gavin does really well with Wii fitness or Wii
Resort. He doesn't do well with typical video games (they tend to
cause rages). These games are about exercise and control over ones
body. Gavin really needs this type of help. We are going to try this
in small spurts at first and see how he does. If nothing else he
sleeps better after wearing himself out.

Lost and Tired

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Mixed bag today...

Today we kept Gavin home from school because we need to meet with his teachers and discuss how he is handled in class.

Gavin's teachers this year just don't see through the manipulation. They treat him like a victim.
Anyway, Gavin is having issues keeping his hands to himself. He derives a sexual pleasure from physical contact with others.

At school he has meltdowns daily. His reward for getting under control is a hug. Also they rub or roll balls all over his body because he likes it and it "relaxes" him.
They haven't caught on that he may be having the meltdowns simply to get them to touch him. This is a huge problem. We met with Patti this week and decided that there will have to be a no physical contact rule.

As a parent this is heart breaking to have to do. However if he is getting sexually charged by touching people then it has to happen. We are allowed to let him shake hands and that is about it. He can hang out with us as usual but just hands to himself.

Elliott sat next to Gavin this afternoon. Elliott stood up on the couch next to him and Gavin started rubbing Elliott's legs. It wasn't accidental either it was disgusting. Gavin was sent to his room and Elliott was reminded that he cannot sit by Gavin.
Everything happens so quick it is almost impossible to keep them apart. We NEVER leave Gavin alone in a room with any of the kids. Things still happen any way.

We try to keep Gavin's room a fun place to be for him so he chooses to be up there more often. He is getting most of his stuff back in his room now. We had to remove everything because was eating it. You heard me correctly, he was eating anything he could fit in his mouth. We made many trips to the children's hospital this summer because of the things he ate. He has eaten entire books, hard plastic fish, paint, his carpet, paper clips, dust, link, his own toe jam ect.... He even ate all the threads off his comforter.

We had to remove everything for his own safety. We have to try to stay one step ahead of him.

Everyone is paying a very high price for having to cater our lives around Gavin's current mood. We never leave the house, we have lost almost all of our friends and our entire family on my wife's side. The kids have no friends because no one can come over. Elliott starts preschool any time now and that will be good for him.

I don't know how much longer we can hold on..

Looks like tomorrow is going to be a snow day anyways. God helps us, please...

Lost and Tired
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The latest...

I spoke earlier of Gavin's sexual aggression. This is what we are seeing. He is grabbing other mens croches. I don't mean by accident or innocently either. He slowly works his way there so as not to be noticed. He actions are deliberate.

He is fond of putting his face in womens breasts and he is not above fondling.

The most disturbing is his aggression towards his younger brother Elliott. Gavin is always trying to hug or kiss him to the point Elliott fights to get away. Gavin has been caught sneaking in and out of Elliott's room at night. We have an alarm on Gavin's door but he has figured out ways around it. He is also masturbating to the point of making himself bleed. He's only 10 years old.

The rule in the house is Gavin is not aloud any physical contact with his younger brothers. He has to be arms length away at all times and is never aloud to be in the same room with them alone even for a minute.

Part of me feels horrible about this. But the number one priority is to insure the safety of our other two kids Elliott (3) and Emmett (19months). We are forced to choose between them. Honestly it is getting easier to make those choices. I used to really feel bad about how strict the rulels were for him as most parents would. We were constantly questioned by family and friends as to why this was necessary. We have lost my wife's entire family over this.

They came to the meetings with specialists in order to get a better understanding but were never accepted Gavin's condition. They never followed the rules and by doing so put Gavin and everyone around him at risk.
Everything (and I mean EVERYTHING) we have put in place has be approaved by all of the doctors, teachers and therapists involved in Gavin's treatment.

We don't enjoy having to keep such a tight leash on him but we no longer have a choice... I guess tonight we will find out how much shorter the leash will need to be.


Lost and Tired
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Feeling like a failure

After all the years of living our lives around Gavin needs I can't help but wonder if we are doing the right thing.

To this point we generally know we are being effective because he gets pissed off at us. He's never sorry he did it he is only sorry and pissed off he got caught.

Gavin doesn't retain much so we are constantly having to repeat ourselves. For example, I will ask Gavin to go get his shoes on or get something from his room. When I finally get his attention he goes up the stairs and comes right back down. The problem lies in the fact that all he did was go up stairs and come right back down having down nothing.

No matter how much we love him this gets so old. It happens every time and with everything. The truly difficult part for me is that sometimes he does it on purpose and sometimes he doesn't. We have to do our best to interpret the situation every time.

In order to give him the best chance at life he has to be held accountable for his actions. He has to memorize right from wrong because he has no inner compass to guide him and probably never will. It goes back to the whole no conscience thing. How do you truly know where he is coming from and what his motives are. All we can do is guess and use the skills we have learned over the years to decode his actions.

We meet with Patti tonight to discuss the sexual aggression. Patti is Gavin's therapist. She's amazing with him. I think my wife and I will go alone tonight in order to discuss where we go from here.



Lost and Tired
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Gavins home from first day back....

Just picked up Gavin. I really think the teachers this year don't believe us that he is pulling their strings. Gavin is extremely intelligent and very capable of doing his school work.
Apparently Gavin needed a few "naps" today. Reality is that he didn't want to do what ever he was told to do so he had a "tummy" ache. I miss his old teachers they knew him so well.
In all fairness to them Gavin is very convincing. No one believed us when we told them what he was capable of doing until they witnessed it for themselves. Gavin can play the victim and manipulate almost anyone into believing him.
We have learned the subtle signs that let us know what he is trying to do.
His doctors said the same thing. They would never have believed it if they hadn't witnessed it themselves first hand.
Over all though he had a good day with only a few fits. He helped me fill the water cooler jugs on the way home and did a great job.

Sometimes its the little things we need to hold on to...


Lost and Tired
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Some backstory...

I adopted Gavin over a year ago but have raised him since he was about 1 year old. His biological father is an addict and alcoholic. He abused my wife (gavins mother).

Gavin suffers from aspergers syndrom, bipolar disorder, ptsd (suffered at the hands of his bio dad and grandmother),sensory integration disorder, ocd, adhd and conduct disorder. His short life has been very dificult for him. We have had the best doctors and therapists working with him for many years. No one has really seen a cases as complex as Gavin.

He used to be a sweet, quiet little boy. Now he is growing into a sexually aggressive, very violent manipulator. We are constantly fighting to keep him grounded in reality. Everyones fear is that he is growing into a sociopath. He doesn't appear to have a conscience as he is only "sorry" if he get's caught.

I don't know what happened. We have fought so hard for him. All we want is for him to reach his potential and be happy.
We loved him and cared for him as best we could. All of his doctors have told us that we have done absolutly everything we could have. This may just be who Gavin is.

Lost and Tired
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First day back...

Getting Gavin ready for school was a nightmare this morning. He couldn't find his other shoe so he was completely loosing it. Both of his shoes were together but he only picked the first one up then couldn't find the second one.

It's important that he be as independent as possible. This forces him to actually put effort into what he is doing. The meltdown this morning was more about not wanting to look. In the end I still had to find it for him because we ran out of time.

Gavin is a very unique case because he floats on the austic spectrum. He can be very high functioning or he can be almost infantile and not be able to do anything on his own.
Everyday is a struggle to figure out where he is so we can help him accordingly.


Lost and Tired
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Here goes nothing........

I created this blog in order to vent and share my personal experiences with autism. My wife and I have 3 boys, our oldest is Autistic. He also has a few other disorders and challanges that I will get into over time. This blog will no sugar coat what we are going through. I will be telling it like it is....

I hope my expreience can help someone else going through something similar......