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 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

Gavin's Weekend

This weekend was pretty good. Haven't had a good one in a while. Saturday was my grandmothers 85th birthday and everyone went to surprise her. Lizze and I had to stay back because she had a med change and a doctors appointment. My parents took all the kids for most of the afternoon and Gavin overnight.

Elliott Richard and I camped out in the living room watching king of the hill on netflix. We got up this morning and ran some errands. I did yard work and then we had a bonfire. Gavin got home around 5 or 6pm and had dinner and went to bed. He was exhausted. EJ and ER went to bed without a problem. Lizze and I watched "The Alphabet Killer" on netflix and called it a night. We had a very welcomed underwhelming weekend.
LT

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

Pins and Needles

We are in the waiting room waiting to get the results of Lizze's MRI from a few weeks back. We will hopefully find out about the migraines, the tremors and the neuropathy. This has been a really long wait.

LT

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.

Lizze MRI update

Lizze had her much anticipated MRI on Friday morning. This is a precautionary but necessary step because of her migraines, tremors and neuropathy. We will hopefully hear back soon because we need some peace of mind.

I don't expect anything to come of this because the migraines are probably related to the firbo. She has also cat scans done and they have all been clean. Please keep her in your prayers.

Rob

A better tomorrow

Gavin and Emmett John both had pretty tough days. Elliott Richard was pretty much along for the ride. Gavin ended up with oatmeal for dinner (which is actually an MST technique). The oatmeal for anyone who thinks it's cruel or mean is used as a consequence for certain behaviors that must be discouraged. Behaviors such as violence and inappropriate touching. These behaviors will get him in lots of trouble as he gets older. We love him and we don't want him to have that happen so his doctors have said it's extremely important that we deal with it now.
Oatmeal is very healthy for you. He simply doesn't like it without sugar. So he gets a bowl of plain oatmeal. It's the only thing we have left to discourage these behaviors. We carefully choose when to use it cause it won't work forever. Typically all we have to do is mention it and that's enough.

Gavin went to bed in a bad mood but before he that he said he thinks tomorrow will be a better day. I'm always impressed when he says this. We tell him this all the time, especially of his really bad days. We want him to know that everyday is a new beginning and we should use it to learn from our mistakes and be the best we can be.

It's nice to hear these little statements from him. It show that sometimes he is actually listening. He may not understand what it means but he's listening.

LT

Love runs deeper than autism.

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

I wish life had a reset button

So I sent my invoices from our contracting company to Ryan Homes today cause they were due. In the email I also wanted to double check that they had received my auto insurance renewal cert.. They never received it. That's a little bit of a problem because now they have put a hold on our payments. Like the one we had been waiting for next week. My insurance company faxed it today but it's to late now. Everything has been delayed till May 22nd.

This also makes payroll impossible. I'm going to try to get an exception on this but it probably won't happen.
During the slow times I only have my brother working for me. So I was able to get his payroll covered (thanks to mom and dad) but the buck stops here. I left a message last week with my agent to remind them to fax it to the corporate office. They didn't get the message I guess. I have been to distracted and didn't follow up like I should have. I really wish things could get just a little bit easier. I would be happy to just catch a break.

LT

Autism and "The Failing Parent"

While this is really a direct response to my wife's post earlier (see below) it applies to most of us.

Lizze,

I want to say a few things in response to your "Bad Mother" post. I want you to know that in almost every conceivable way I agree with what you had to say with one big exception. You feel like a bad mother, well I feel like a terrible father. The reality is that you are a great mother despite how you may feel sometimes. You give up everything for our kids. No one on this planet knows more then I do how much pain you push through everyday for our kids.

Gavin has no idea what he's saying most of the time. He works kinda like a slip'n slide. Anything, any words, any thoughts that happen to pop into his head just slips right out of his mouth. He doesn't care how it effects anyone because most if the time he doesn't even realize he has said anything wrong. Other times he hides behind that so he can say whatever he wants. To say it's a constant struggle would be understatement.

I think that the major flaw in how we both feel at times is that we base our feelings of failure on Gavin's current state and how it effects us. We need to both realize that we have no control over how Gavin is doing or how what he is doing makes us feel. We both love him very much but he is exhausting, frustrating and unsettling to be around anymore.

I think it would be unusual for us not to have these feelings of failure and or guilt. It's part of what makes us good parents. The fact that Gavin can no longer come first is dictated not by our feelings but by the fact that we have other children that must come first. As all of the experts have told us very little we do has any impact on him. We love him and we have given him everything we could. We will continue to do the same forever but our priorities have had to shift.

Gavin makes choices that endanger himself and those around him. He is sexually aggressive and violent. We have to protect his younger brothers as well as ourselves. That doesn't mean we are failing him or giving up on him.

Everyday I truly believe God has way more faith in me then I have in myself. I often wonder why I was picked for this job. We walk a very fine line everyday. I quite often feel like I'm losing my mind but some how I always find it. As parents to a special needs child or children our journey through life will challenging on a good day. We will find ourselves very alone because only truly special people will walk with us on the journey and those special people will be few.
However, there will be joy and happiness along the way.

There are very few people who can parent a special needs child. We are definitely in the minority. It takes incredible strength, courage and an extreme amount of selflessness to do what we are doing.

As traumatic as this journey can be I just don't trust anyone else to do it. We were hand picked to be his parents. There are many times I question and ask "why me, why us" but we will never find that answer.

My point in all of this is that we cannot base our success or failure as a parent on Gavin. Nothing we do is ever going to make him better. His condition is not a reflection on what we have done wrong. We continue to love and care for him no matter how challenging, disrespectful and destructive he is. He is our child and nothing will change that.

LT

A very honest post....

My wife just posted this to her blog. I just read it and I am sure we can all relate in some way. It is a very honest post and a really good read.
-----------------
I am not a good mother. I'm not. I hate to burst your bubble. I hate to tell you something you don't want to know. But it's true.

I. Am. Not. A. Good. Mother.

I try. God, how I try. But it's

so hard. To say that Gavin can push my buttons without even trying...is an understatement. Then when he

does try to push my buttons...it's enough to drive me insane. To say that I'm stressed out and over-whelmed...is a gross understatement. To say that they 

all try to push my buttons...it drives me to the brink

Read the rest at the link below:

http://dailymommysurvival.wordpress.com/

Lizze's migraine

As I have mentioned before Lizze suffers from migraines. She has migraines almost daily. Meds don't work to prevent or treat them either. She just got back from her new neurologist she has through pain management and he is categorizing her as basicly disabled. She is having an MRI in 2 weeks to rule out a tumor but her cat scans have always been clear. This may be related to the fibro.

I guess when you have migraines for more then 14 days out of the month and they don't respond to meds it's considered disabling. I didn't realize that. I knew it was bad but not that bad. He has also striped her diet of anything with tyramine ( I think that's what it was) in it. My mom is on the gluten free diet cause she has celiac and this appears worse then that. I didn't expect this. I thought maybe they would increase her Topamax or something. Good thing we haven't gone shopping yet.

LT