Breaking The Silence of Autism

Emmett John

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

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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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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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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..


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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Back in limbo

Well we don’t know anymore then what we did before today. He has a speech disorder for sure. He does parallel play. But we are not really any closer to the diagnosis. We have picked up a geneticist, GI specialist, OT and Speech. That’s what I remember anyways. She wants a full genetic work up to figure out what’s going on.

She doesn’t know where he falls on the spectrum. She wants to make sure we don’t label any wrong. So basically she said he clearly has a speech disorder and he parallel plays. However, he has good eye contact and engages socially which is good. That’s all I can remember. Lizze will probably post a more detailed post on her blog.

Thanks to all for the thoughts and prayers.

LT

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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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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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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 Discipline: How do you manage?

Disciplining your kids can be tough for parents sometimes. But what if your child has Autism? Navigating the world of Autism is like trying to put one of those generic puzzles with no picture together. You are often times flying blind. I can’t tell you how many times I have felt lost and defeated.

In our case with Gavin, he is a quagmire wrapped inside an enigma. He has so many other mental health issues that it really makes things difficult. How do you hold him accountable? What are the standards and are they set to high or to low? What is he actually capable of doing? These are all questions my wife and I have asked for years. Just when we think we have it figured out we realize things like, he has been playing us.

One thing about Gavin is he’s truly gifted in the art of manipulation. I really mean that. He’s that good. Unless we always assume he’s playing us it’s all but impossible to tell the difference. I bet so many of you out there know what I talking about. Should we always assume he’s up to something because that feels wrong? How far is to far to push when there are no clearly defined limits?

I long for the day I go to the mail box and find the instruction manual for Gavin has finally arrived.

LT


How Autism effects parents

How does Autism effect parents? This might be a delicate subject but people need to understand in order to support. In my experience there really 2 major categories. There are parents with kids Autistic from birth and there are parents with kids that regress into Autism.
This post will be in several parts. Below is part 1.

—Please understand that I’m by no means trying to compare pain here. I’m trying to help bridge the gap and help us understand one another.—

I can only speak personally about the regressive form of Autism. This form of Autism usually strikes around age 2 or 3. You don’t suspect anything at all because up to this point everything was perfect. All the milestones were reached on time. You have your whole life planned out. You have bonded with your child. You look forward to coming home from work and being greeted with a big hug and kiss everyday. You might be looking forward to coaching his or her team. You look forward to holiday’s and birthday’s. Especially 4th of July fireworks because your child watches them with amazement and wonder.
You are happy and at peace with your life. It’s everything you’ve dreamed of and planned for.

Then one day you wake up and your child is different. You can’t put your finger on it but things start changing and you brush it off as a phase. The phase never passes. In fact it gets worse. Your child will no longer look you in the eyes or always acknowledge you when you call. The hugs begin to stop as well as the kisses. By this time you have been to the doctor and they send you to a specialist. You probably have to wait for what seems like an eternity. When you finally get into the specialists office you hear the words that will forever change you “your child has Autism”.

To Be Continued:

LT