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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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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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

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

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

Rough day

Today has been a rough one. Gavin got off to school on a bad note. I was up all night again with ER. EJ few off the couch several times today and has a bruise running up and down the left side of his face. We can't sem to stay ahead of him no matter how hard we try, and believe me we do.

As you are aware we have had some family drama which has impacted us in a negative way. We have begun to rise above this and I plan on leaving this behind me now. We have more worthy things to spend our precious little amounts of energy on.

Gavin had a good day at school but a really rough time once home. He just doesn't listen at all. He was talking to ER about his dead cat. I have told him countless times not to talk to ER about ANYTHING like that but he doesn't listen. So I had to spend over an hour trying to explain why we could not save Gavin's cat and bring him home so Gavin can be happy. Gavin has become very good at stalling when he doesn't want to do anything. Pointless question after question time and time again. It's driving me crazy. He won't just do the extremely simple and mundane tasks we ask of him. He drags it out to the point that I want to say "forget it, I'll do it myself". However, I can't do that because he will just do it again and again. We can't let these things work or we will be chasing our tails forever.

Lizze has returned to the school PTA as president. While I have my concerns about her taking on anything else right now, she is really good at it. The school really needs her and it might do her some good and be a distraction. She let the position go this year because it was just to much. The principle wants to take her to lunch the first week of June. She is really excited about this. I'm very proud of her and look forward to helping her next year.

We owe the school a tremendous amount. They have really helped Gavin and will eventually be helping EJ. This is a charter school so they need all the help they can get. I can't say enough about how they change the lives of these kids. I think Lizze might be doing an article in which she interviews the school for the examiner.

I'm currently catching up on my shows and doing laundry. It's really the only quiet time I get so I take what I can.

Have a great night..

LT

Thank you for sharing our lives. 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

School days

Well it looks to be a pretty crappy day outside. I leave shortly to get Gavin off to school. I think he actually slept most of the night so that should help him out today. Hopefully he has a good day and it sets the tone for the week. Less then 2 weeks of school left.


LT

Please be in a good mood!!

About to get Gavin from school. Praying he had a good day and is in a good mood. I can't take any drama right now. I still don't feel good and I have had all I can take and it's only Tuesday.

Autism and school

School was a nightmare today. Gavin had to go to the office at least twice today. He did not have a good day. We tried to talk to him about it but he "couldn't" remember.

I wish I knew what the motivation for his actions were. He says he can't help it but I don't know whether I can believe him. It really looks like he's making a lot of bad choices. I know he's not being truthful when he says he can't remember if he went to the office today. Or maybe he is and we are dealing with multiples, which has been suggested in the past. Which would explain why he doesn't remember. Most likely he thinks he is going to get in trouble even though we tell him he's not.

I don't know what to do anymore. But we just spent the last hour trying to understand what happened today. We already got the cliffnotes version from his teachers but we wanted to hear it from him. My head hurts and my chest is heavy. If I had the energy, I would just go beat my head into the wall until I blacked out. This is so frustrating.

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.

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

Little Victories

Well as far as victories go we never have many. Yesterday though Gavin had a perfect day at school. Even after forgetting his backpack. This almost never happens and it happened on aday we really needed it to.

The rest of the day with Gavin was good until after dinner when he really struggled but in fairness to Gavin the emotional level in the house was very high. So all things considered he had a really good day.

He went to school this morning with a good attitude and said he was going to have an awesome day.

Here's to hoping..

LT

AAAAHHHHHH!!!!

Gavin had an interesting day. By interesting I mean bad. I am becoming more frustrated with Gavin's school situation as a whole.

We get a summary of his day, every day. They use moon's as the behavior grading system. Full moon is great and new moon is bad. So when we ask Gavin how his day was he says "8 full moons" as an example.

We have been struggling with this because it doesn't appear to be very accurate. Gavin was sent to the principles office again today (this has become a daily occurrence) because he was out of control. He missed all of reading class because of his behavior. He received a 3/4 moon for a class he didn't even attend. Are they grading on a curve? On what planet does that qualify as a 3/4 moon.

Maybe I'm being strict or expecting to much from Gavin but in my opinion any day he is sent to the principles office is a BAD day. He goes to the principles office at least once a day for behavioral issues. I don't understand how that helps him. If he gets sent to the office during a class because of choices he has made then that should be a "new moon". Right?

I mean as he gets older he won't be able to get away with the things he gets away with now. Our stance is that his only real chance (ha ha that rhymes) is to ride him pretty hard now to curb the behavioral issues. No one is going to be understanding when he's older and still doing these things. Does any of this make sense? He will simply go to jail.

I don't know how to get the school to grasp this concept. It's pretty simple in my opinion. There has to be natural consequences and realistic expectations. Gavin's therapist is having a meeting with the school next week to clear up any confusion as to what his capabilities are.

I'm not going to hold me breath. I will probably just continue to bang my head into the wall out of frustration until this is resolved.

Lost and Tired

If I had hair I would pull it out

So we have been having problems with Gavin's school not handling him appropriately. There was little accountability for Gavin and that was a huge problem. I thought we had worked out most of the issues but apparently not.

Gavin teachers are trying to teach the kids to listen to their "inner voice". I know there are some out there that are saying so what. I also know there are some of you out there saying "OMG what are they thinking".
Here is why the "OMG's" are correct. Gavin has been hearing voices for a few years now. He is medicated for it but we are pretty sure he still hears them. Gavin's voices in the past have talked about killing, setting the house on fire ect. So now you see the problem we have. His teachers are telling him to listen to his inner voice. We have already discussed this with them but it didn't seem to be taken seriously.

So now poor Gavin is even more confused then he was with just the voices in his head. He had learned to recognise them as not real voices but still struggles with it from time to time. Now he is being taught to listen to them at school. I called the school this morning to demand they stop the inner voice stuff with him. Who knows if it's going to work....


Lost and Tired

Common Sense

One of the most frustrating and draining things about raising Gavin is the fact that he lacks common sense. I am very serious when I say that. Gavin does not have any common sense. That part of his brain just doesn't work. While he is extremely intelligent it's also "think to breath" so to speak with everything else. He doesn't recognise even the most basic safety things like the burner is hot or that's way to high to jump from.

Honestly, Elliott Richard past him up in that department a while back. It's hard to always keep in mind that Gavin really doesn't function very well in the real world. It's really easy to lose your patience because all you see sometimes is a 10 year old doing things that his 4 year old brother knows is wrong.

You have to visualize Gavin as a 2 or 3 year old in a bigger body. So what Gavin does is really appropriate for his emotional age but not his physical age. Way to often I see him as an out of control 10 year old. Gavin is really smart and can do some things that are well past is physical age so it's easy to forget where he really is. That is really one of the most difficult parts of this whole journey.


Lost and Tired