Breaking The Silence of Autism

Unpleasant Truth

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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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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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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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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Waiting

We are here now and waiting. The waiting is the worst. I feel sick to my stomach… I hate to say this but we are past the point will we are going to receive good news. It’s a matter of figuring out how bad things are.

He is cute, am I right? Of course he is. He needs a hair cut but that’s a battle we haven’t picked yet.

LT

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Please say a prayer

Please say a pray today for us. EJ goes to the Children’s Hospital today to see the Neuro/Developmental Pediatrician. We are now officially on the road to his diagnosis.

We’ll know exactly how far behind he is developmentally. Hopefully we learn what we can do to help him through this. I’m sick to my stomach right now. This is going to be an emotionally exhausting day. Please say a prayer.

LT

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Surving Autism

Some times I just wish I could run away from my life. I’m tired, frustrated, angry, pissed off and done with everything. I would give just about anything to move out of my neighborhood but I can’t. We have 2 or 3 neighbors that I could never replace and would truly miss. I haven’t had a good nights sleep in so long (years, literally years). Sometimes I don’t even feel I can even function anymore.

I was just about to lay down last night and both kids woke up at the same time. We had some inconsiderate neighbors that were being entirely to loud and woke up both kids. ER was hysterical I don’t think he was feeling well to start with. 0nce he woke up he didn’t go back to bed for HOURS. EJ was the same way. He screamed at Lizze for HOURS last night. We had to divide and conquer again. Once I finally got to sleep I was awoken because Gavin was throwing a fit.

Yesterday I decided I was going to pay it forward to Gavin. I fixed his LeapFrog Leapster and gave it to him. I thought I was doing a good thing. I thought that there was no way he would ever earn it back the way he has been acting the past few weeks. I took a leap of faith and surprised him with it. I was hoping to spark something inside him or maybe just reconnect on some level. I explained that he would have to follow certain rules with it. The biggest one was he wasn’t allowed to play it after bed time. Well turns out he woke himself up last night, found it and played it till morning. Lizze found it hidden on his bed this morning and took it. Gavin demanded to know where it went. She explained why she took it and Gavin melted down. This is why we can’t do things like that with him. He exploits it every time.

So far today he has not listened. He keeps doing things we tell him not to. It like he gets up every day thinking about how he can push us over the edge. There is an element of “purposefullness” (if that’s even a word) in most of what he does. He’s a drama king and it got old a long time ago. I swear he thrives on conflict. I know many people out there will find this hard to accept or believe but welcome to my reality. Not every child with Autism is the same and some are more difficult then others. Some like Gavin have a multitude of major mental health disorders.

I get forced to spend what little I have left chasing after Gavin. That leaves nothing for ER and EJ. I’m getting resentful because of this. Gavin says he’s “sorry” rather he screams he’s “sorry”. I don’t believe him. He’s only sorry when he gets in trouble. He’s not sorry that he just hurt one of his brothers he’s sorry he got in trouble. I truly don’t know what his motivation is to do these things is. I’m not sure what the payout is.

I said a long time ago I was going to be honest regardless of how it sounds. I know how these things sound believe me. I love Gavin even though he frustrates me as much as he does. I’m just getting to the point where I have to draw a line. ER and EJ need more from me then I can give then right now. I owe it to them to be able to give them the best of me and right now I don’t even like being me. I spend far to much time and energy every day having to deal with Gavin’s behavioral issues. He still appears to be manic and we are left with few options in the meds department. This summer is going to break me. Well, hopefully not break me but maybe drive to the edge of sanity.

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Sleepless in Ohio

Today has been hell. Gavin was throwing meltdown after meltdown. He almost smashed EJ’s fingers in the door when he slammed it in his rage. He actually threw something at me today when I shut his window in order to spare the neighbors from his screaming. I’m very quickly getting to a point where I have nothing left to give him. If he had smashed EJ’s fingers they would be broken for sure. He slammed the door so hard it rattled the windows. I don’t know what I would have done and that honestly scares me.

Gavin is getting more and more aggressive. We can’t get the doctor to call us back either. He is honestly a horrible example for the other kids. I don’t know if he is even capable of listening at this point. He won’t even stay in his bedroom when he is sent there. If we held him accountable for just the major things he would never leave his room. I don’t even know for sure if he can even learn from his mistakes. It’s almost not worth the effort anymore. We have so little left and what we give Gavin is almost pointless and better served by giving it to the other kids instead.

I’m very aware of how this sounds but it’s our reality. EJ is downstairs with Lizze (it’s 2am) cause he woke up screaming and he only wanted her this time. I hope she can get some sleep tonight.

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Holy crap, oatmeal is losing effect..

Houston we have a problem. Oatmeal, which has been the only deterrent is losing effectiveness. He now just stalls until there’s no longer a point. The only thing we would have left to do is adjust it so that if he doesn’t finish in a predetermined amount of time then it gets pushed of to the next meal. The problem with that is he will choose not to eat. It will then become a power struggle.

Before anyone says that rewards work better then consequences be aware the rewards or incentives DO NOT work. Gavin exploits the situation and then we have to stop. For example if we reward him for getting his meltdown under control then he will begin having the meltdowns just to be rewarded for stopping. So consequences it is then.

I feel torn because part of me wants to push the oatmeal and win the power struggle. We will provide him with a healthy (oatmeal) and he can make the choice to eat it on not. He will only have oatmeal as an option until he actually eats it. We only give him a small bowl so it’s reasonable.

On the other hand he could take it pretty far. How far are we willing to take it? The other issue is if he doesn’t eat the oatmeal (thus skipping the meal) will that encourage him to consume non-edibles? We already struggle with that.

If we decide to pick this battle we would have to see it through. He would need to understand with no uncertainty that we mean business and that we will not back down.

I wish just one thing with him would be just difficult and not impossible.

LT

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It has been an “oatmeal” kind of day.

It’s been a rough day but Gavin has been very difficult. Gavin has listened at all today. He just seems to ignore the rules anymore. I swear to God if I hear him say “I’m sorry” one more time my head is going to explode. He’s only saying sorry because he got busted. He doesn’t learn from his mistakes.

We are seeing more of the mental health issues at work here. These problem’s go way deeper then Autism alone. I honestly don’t know how much more of this I can take. I gave him chance after chance today and he still choose poorly. So he had oatmeal for dinner. He had almost 30 min to eat a really tiny bowl. He didn’t cause he was stalling. What he didn’t know was that he would have gotten desert if he had eaten it. Honestly he had more then enough time to eat what was given to him. Again he choose poorly. At least it’s good to know the oatmeal is still effective.

LT

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It has been an “oatmeal” kind of day.

It’s been a rough day but Gavin has been very difficult. Gavin has listened at all today. He just seems to ignore the rules anymore. I swear to God if I hear him say “I’m sorry” one more time my head is going to explode. He’s only saying sorry because he got busted. He doesn’t learn from his mistakes.

We are seeing more of the mental health issues at work here. These problem’s go way deeper then Autism alone. I honestly don’t know how much more of this I can take. I gave him chance after chance today and he still choose poorly. So he had oatmeal for dinner. He had almost 30 min to eat a really tiny bowl. He didn’t cause he was stalling. What he didn’t know was that he would have gotten desert if he had eaten it. Honestly he had more then enough time to eat what was given to him. Again he choose poorly. At least it’s good to know the oatmeal is still effective.

LT

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Autism and the school year

So I have been thinking. Wouldn’t Autistic children benefit from a year round school year. It would prevent or help to prevent the loss that occurs over summer break. The kids love and need their routine. It would also serve as a sort of respite for parents.

Gavin would benefit from this tremendously. He loses far to much progress during summer break. I know funding is an issue but there are always ways around that. Just a thought.

LT

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Gavin, Gavin, Gavin

ER was playing Toy Story Mania on the computer. Gavin started telling him what to do which makes ER frustrated. I told Gavin he had to stop or he was going to his room. BAM, not 5 mins later he’s yelling at ER to get more points. So he went to his room. We try to be as consistent as possible. He needs to abide by societies standards and laws in the real world. So we have to teach him while we can.

LT

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Day 2 of camp

ER is off to camp again today. He is thrilled to be there. Hopefully this will bode well for preschool this fall.

Gavin has already been to his room twice. The first time was for not listening and the second time I can’t remember but probably has to do with not listening. He keeps trying to have these bizarre conversations with me. I can’t really explain because they didn’t make any sense and to be honest I was filtering it out after a point. He gets frustrated because I can’t follow what he’s saying. Sometimes he will ask me if I remember when he was six years old and he watched spongebob at grandma’s house while eating peanut butter and jelly? First off if he was there it was probably because they were watching him. I tell him Gavin I wasn’t there so no I don’t remember. This usually isn’t good enough so he will describe it in more detail and the cycle goes on until I can’t take it.

He has an amazing long term memory but zero short term memory. I find I am often time frustrated by this because he can remember something from 6 years ago but can’t remember I just asked him to put his shoes on. This is one of the reasons why I have such a hard time gaging where is coming from on things. You never know if he is being difficult or he really can’t remember and/or do something asked of him.

LT

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Night Terrors and Autism

Emmett John is up again screaming. He screams and flails around. This is just like Gavin did when he was little. He will bang him head around if we let him go. Lizze finally took him downstairs for a change of scenery. Hopefully he will go back to sleep.
LT

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Gavin

I don’t know what’s going on with Gavin. He just doesn’t let up. He doesn’t seem to be able to listen. He has really lost the ability to retain things. We have to constantly be on him about everything. I feel bad because it feels like we need to cut him some slack but I don’t know that we should.

For example: Tonight Gavin wanted a cookie my mom had brought over. We told him after dinner. He ate dinner and wanted the cookie. We said wait a minute and we’ll get it for you. He then went into the kitchen and took what he wanted. When we stopped him he said he thought we told him to. We were very clear in our instructions to wait and we would get it for him.

Because he didn’t listen he didn’t get his cookie. He was upset but it’s got to be this way. These kinds of things are happening more and more often. Is he just making bad choices or is this out of his control? He seems to have the short term memory of a goldfish. I mean no disrespect to Gavin but that’s what it’s like. He can’t seem to do the simplest tasks any more.

He also seems to be trying to “connect” with us. It’s quite strange and awkward. He just won’t stop talking. Honestly, it’s very uncomfortable. He’s seems to really be trying to engage but he’s cramming everything down our throats. He won’t stop talking, ever. Maybe he’s manic? Who knows. He just wears on me. I wish I didn’t feel this way but I do. Part of the problem for me is I don’t know where he is coming from with any of this. Is he sincere? Is he playing us? These are valid questions because he has a very long history of manipulation. I’m so tired and I just want tomorrow to be easier.

LT

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Today has been a struggle.

Today has been a difficult day. Gavin is really wearing me down. My patience is running dry. He is not listening to anything we tell him. He is become very disrespectful to Lizze. The PICA issue are getting more and disturbing. We have to watch his every move it seems.  We are trying to foster independence but right now that doesn’t seem to be possible. We can’t trust him or what he tells us. We randomly ask him this question: “have you eaten anything you weren’t supposed to?”. He will say “no” but we can tell by the way he says “no” whether or no he is lying. Then the challenge becomes figuring out what it is that he ate.  Every time we figure out what it is he ate I can’t imagine it getting worse. It continues to get worse. As I mentioned in a previous post he is now basicly licking the bathroom sink. What the hell are we supposed to do with that?

Lizze’s migraines are getting worse and neither one of us are getting any sleep. ER and EJ are also having a rough time dealing with the stress in the house. We need to find a way to reduce the stress and find it fast.

LT


Autism and Comorbidity

Autism is challenging enough as it is. However, throwing in comorbidites is the really tough part because you rarely know what is what. We chase one symptom only to make another worse. In Gavin’s case we never really know what his capabilities are because he is so behaviorally limited by all the other disorders.

LT


Autism and Hygiene

Hygiene. As if Autism wasn’t challenging enough. How do you deal with hygiene issues? Gavin is having issues with bathroom hygiene, like cleaning himself up after going potty. Sometimes he cleans himself up and sometimes he doesn’t. He won’t talk about it and won’t left us help.

The other big problem and it’s a big problem is that he sometimes doesn’t want to pee in the potty so he just pee’s his pants. He doesn’t change them afterwards. He just goes on like nothing happened. We just realized this the other day. He says that “sometimes he just doesn’t want to get up to go potty”. He gets engrossed in what he’s doing and won’t walk away.

What are we supposed to do with that? I guess we at least know where the smell was coming from now.

LT


PICA Problems…..

We are struggling with PICA again with Gavin. Not sure if we are struggling again or we have just become aware of it again. Are there ways of discouraging it? Should we down play it? Or should we crack the whip so to speak?

LT


Autism and PICA

I spoke a while back about Gavin eating tooth paste. We adjusted where it was kept and watched him closer. Well apparently he is now eating the tooth paste that is crusted over in the sink. He is also cleaning out the drain and eating that also. We try to keep the sink clean but don’t always stay on top of it.

The other problem is that he will to this when he asks to go to the bathroom. He apparently doesn’t always need to go. He’s looking for tooth paste. We are going to have to supervise is use of the bathroom period.

I just never ends……..

LT