Love runs deeper than autism.

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

Autism Effecting Elliott Richard

For the second time this week poor Elliott Richard has got his fingers slammed in the door. Today he was trying to keep Emmett John from sneaking into the bathroom. All he is doing is trying to look out for his little brother. Emmett John has no fear so we have to constantly follow him around. Elliott Richard feels he has to look out for him also because he loves him.

Inevitably, Elliott Richard gets hurt in the process. He takes being a big brother very seriously. I just wish isn't wasn't so dangerous.

LT

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

A moment of peace

I could live in these moments forever. Emmett John is peaceful and resting. I cherish moments like these...


LT

Autism and Emmett John

Emmett John finished his first evaluation yesterday. He completely failed the evaluation. That's not good. He is now being referred to a pediatric neurologist and from there to the autism clinic to try to pin point his location on the spectrum.

The more questions we answer, the closer we get to an official diagnosis and the more painful this becomes. Now it's another tortuous waiting game.

LT

A little bit of peace

This was earlier tonight. I was giving Elliott Richard a bath before bed and Emmett John decided to jump in. Maggie was there to lick up as much bath water as possible (at least it's not the toilet).

LT

I need a mute button

I have decided that I wish my kids came with a mute button. They have been screaming ALL day long. I swear it's like they have developed their own language and it's based on screaming.

So I decided I need a mute button. You can buy those universal remote control's that cost a few hundred dollars. They are supposed to control everything under the sun. I thought I would check one out but guess what no mute button for the kids. I'm not going to give up on this. I will continue my search for a mute button. In the event you find one before I do can you please let me know. Assuming I have any sanity left to salvage I'm going to need to get 3 of them.

LT

Autism, Autism and More Autism

The "Help Me Grow" people are coming out again today to continue Emmett John's evaluation. The more time that goes by the it looks like Emmett John will not escape the diagnosis.

He doesn't talk yet. All he can do is grunt and squeal (very loud). He has become more aggressive towards Elliott Richard and Lizze. Emmett John hits Elliott Richard for no apparent reason. He also claws up Lizze's face actually breaking the skin. She has scratches in various stages of healing on her chin and cheeks.

I don't know why he does any of this. I think maybe he is just frustrated because he can't communicate with us so he lashes out. I don't know why he targets those two only but it's getting old.

Lizze and I are both completely worn out and have nothing left. Some how we manage to get out of bed in the morning and get things going but that's where the productivity ends. There are so many things that need to be done to this house but it comes down to money and energy, of which we have none.
I wish there were more agencies out there to help families like ours. We always fall into that grey area where there is little to no help.

The truth is that things just seem to keep getting more difficult to manage. I feel like I'm being crushed under this weight. I even dream about being crushed or drowning in the middle of the ocean. That tells me I'm pretty stressed out and overwhelmed.

Not sure how I'm going to pull this off. Sometimes I really think our only chance is a miracle.

LT

Just another "Manic Monday"

Gavin is really off again this morning. He goes around the mumbling to himself. Then out of no where he asks us a question about something he's he been mumbling about. Unfortunately, we haven't a clue what he's talking about so he gets frustrated with us.

Most of his coherent conversations with us revolve around food. He is obsessed with eating. He thinks he's starving all the time. The reality is that Gavin cannot regulate himself so he will eat until he pukes. So we have to be very careful with what he eats and how much he eats. We don't want him to develop an eating disorder because his doctors are concerned about that.

So far not a great start to the day.

LT

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

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/

Autism and Bipolar

As you are all aware of Gavin is autistic. Gavin is also bipolar and about 7 other comorbidities. Right now we are really struggling with him because his bipolar meds are no longer effective. It seems like a cruel twist of fate that these kids that struggle so much with autism as it is that they are also burdened with comorbidities like bipolar.

In my experience with this I have found this to significantly complicate matters. You treat one and it causes the other to be more difficult to manage. Gavin, for example doesn't do well with adhd meds. So we can't help him much with that. His bipolar has become extremely tough to manage. He no longer responds to most bipolar meds. All we have left to try is lithium. If that doesn't work I have no clue what we will do next. Kids like Gavin tend to rapid cycle when their bipolar is not properly managed.

Gavin is manic right now so he is all over the place. He is driving us all crazy right now. We all understand it's not his fault but that doesn't change the impact his actions have on the entire family. We should hear about med changes today. It's going to be a long weekend.

LT

A Gavin Update

Gavin had a good day at school but really struggled at home. He is starting to treat Lizze quite poorly. That will have to stop as I won't stand for that, period. He is starting to get creepy again. He is all over the place and talks about things that don't make a whole lot of sense.

Clearly the bipolar meds aren't working and he is rapid cycling again. He does that when the meds are off. I'm not happy about the med changes coming but I fear it's a necessary evil.

On a side note Lizze reviewed the "Shark Steam Pocket" for the Cleveland Examiner. If you haven't already done so you should check it out. Also subscribe to her page and get email updates when new articles post. Her topic typically will be about autism, fibromyalgia. Occasionally she is going to be reviewing things we have found that makes our lives a bit easier. Stop by if you get a chance, I know she would appreciate some feedback.

http://tinyurl.com/y4veowl

LT

A parent of autism

I've been a parent to an autistic child for about 9 years. I've been through it all before so I should know what to expect but I don't.

For some reason it feels like the first time again. All the uncertainty, fear and feelings of guilt have all come back. I wonder what I did wrong. I ask myself what I should have done differently.

I have also begun bargaining with God. Later the anger with God will kick in for what is happening to Emmett John. The fear of whether or not it is regressive like Gavin's is smacking me in the face.

LT

Mentally preparing for today.

In 2 hours Emmett John will begin his evaluation for autism. Up to this point it has all been speculation so we really didn't have anything to deal with emotionally. After today however, things will be made much more real. As much as I try I just don't see us coming out the other side of the tunnel without a diagnosis somewhere on the spectrum.

The more we watch Emmett John the more it appears to be spectrum related. He smells everything, food and non-food items. The fits and the inability to talk are big ones also. As a father I just want him to be ok. As father that has been through hell and back over the past 10 years with Gavin, I want to put a name to what this is so we know how to attack it. I want Emmett John to have a fighting chance at life. I have been sick to my stomach all day anticipating this afternoon.

I have been cleaning the house and mopping the floors. All of which it pointless but it expends my nervous energy. Lizze's new medical news from earlier hasn't even hit me yet. I'm sure it will after they are gone today and I can sit down and breathe.

Unfortunately, I'll be missing most of the evaluation because I have to pick up Gavin from school. Lizze is very good with this kind of thing so everything will be ok.

LT

More health issues

Lizze just got back from the doctor. They want to do a sleep study now because they think she is narcoleptic. This is because she falls asleep right in the middle of doing something. I just assumed she was tired but apparently the meds she is on shouldn't be causing the sleeping stuff. So for now we are waiting for her MRI at the end of the month and the phone call to tell us when the sleep study is.

on the plus side she seems to be writing a lot. Writing really helps her to escape all of this for a little bit.

LT

Autism Awareness Month

As you are all aware this is Autism Awareness Month. I would like to know why I don't see or hear anything about it in my area. I live in northeast ohio and there has been nothing.

Maybe it's just because it has struck my family that I am more aware but I would have thought I would have seen ribbons or signs or even hear something on the news or radio. Admittedly, I can't be everywhere and hear everything but it's been to quite. I hear dozens and dozens of times a day how someone found some stupid lost animal in Farmville or someone found a lost egg. Where are our priorities.

It actually makes me angry that this month seems to be slipping by unnoticed. I wish there was something I could do to raise awareness. I'm going to have to think about this and try to figure out a way to raise awareness every month.

Autism is such a serious problem that maybe we should have more then just one month. There should always be awareness. Honestly, awareness isn't enough we need action and results.

LT

Autism and "The Blended Family". An unpleasant truth.

Disclaimer: This is not an easy subject for me to talk about. I have daily emotional struggles with this. I hope this helps someone else.

As you may know we are a blended family.  I have raised Gavin since he was 15 months. I'm the only father he has ever really known. I never really looked at Gavin any different then my own kids.  The unpleasant truth for me is that it is different. I love Gavin, I always have and I always will. However, there is something different on a very basic human level.  I was there from the beginning with Elliott Richard and Emmett John. I heard their heart beat for the first time and I cried. When I saw them for the first time during the ultrasounds I cried again.

I have felt a deep sense of guilt because my wife was adopted and has very strong feelings on the issue (and understandably so). Some day maybe I'll get into some of the things my wife has been through. Or if you can't wait till then you can always read for yourself at her blog.

I have found that as time goes on that difference becomes bigger and bigger. I first realized this when Elliott Richard was about 6 months old and Gavin literally kicked him across the floor for touching his foot. It's that paternal instinct to protect my own, regardless of where the threat comes from. I have found myself having to protect Elliott Richard, Emmett John and Lizze from Gavin on countless occasions. I really can't explain how it feels to realize this.

I have admitted this to all his doctors and they all insist that this is normal because there is no biological connection. If I really break it down even more is it because the Gavin I used to know died a long time ago. I know that sounds really bad but Gavin has the regressive form of autism. He wasn't always like this. I can't remember the exact day that it happened but I swear he went to bed fine and then woke up different. What is left of Gavin is a shell of who he was. Between the bipolar, autism and the almost dozen other diagnoses he just isn't there anymore. So maybe I feel like I'm living with an aggressive and often violent stranger.

Everyday I watch Elliott Richard try to connect with his "big brother" and get rebuffed. It's so painful to watch Elliott Richard walk away crying because Gavin just tunes him out. Really, it's not Gavin's fault either but that doesn't lessen the impact it has. Elliott Richard certainly doesn't understand that. So I guess the truth is that our blended family really struggles with this issue. We all love Gavin very much but at the same time we all struggle everyday to live with him.

admitting this isn't an easy thing to do. My hope is that my truth will help others to talk about and share their feelings and personal experience with this issue.

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

300 Questions

Lizze and I have been working on a 300 question intake for the autism clinic for Emmett John. We didn't realize just how many things Emmett John wasn't doing until we started answering these question. Actually is was really depressing to realize this. I guess it's becoming more and more real as we go on.
We stopped last night on question 171. We are doing to finish it tonight so we can turn it in ASAP.


LT

I launched my new business website..

I had big issues trying to migrate our business website to a new host. As a result I had to start from scratch. I have been fixing computers for many years. I have worked for Microsoft for about 12 years now. My last project I worked on was Windows 7. I have been using Windows 7 for a few years now.

After I destroyed my back while I was a firefighter/paramedic I needed a way to continue to provide for our family. As our family life became more "complicated" and my back continued to get worse we decided to pursue the computer repairs (that I was doing for everyone anyway) and grow it into a home business. Things have slowed down since Emmett John came along really because our attention has been so divided.

Things are getting tougher so I decided to more aggressively pursue new business. I wanted to migrate our website to a new host but that ended in disaster. So I had to start over from scratch. I finally published it the other day and thought I would share it with you guys. Be nice because it is a work in progress :) www.computerrenew.org


Thanks

LT

A great article on Vaccines and Autism

I found this article today while doing some research. I thought it was a good read. I'm not sure who wrote it.

The article can be found here: (or read below)

http://articles.sfgate.com/2010-02-07/opinion/17848204_1_andrew-wakefield-vaccines-autism

A reality check on autism and vaccines
February 07, 2010

Many worried and angry parents of an autistic child believe that vaccines may cause the disease. But it's pure myth - disproved by numerous studies and now a final slap from a British journal disowning a report that started the dangerous nonsense.

Will these parents accept reality - and allow their children to receive shots against a dozen or more illnesses? And will fringe groups that play to fears of autism give up their indefensible claims?

The answers can't come soon enough for public health experts. Vaccination rates, while generally high, have shown dips partly because parents are citing the notion of vaccine dangers in skipping shots for their children.

Smallpox and polio have been virtually eradicated thanks to vaccines. But whooping cough, pertussis and measles - all but stamped out years ago - can reappear via unvaccinated patients.

A law that allows parents to opt out of school-required shots has raised the worry level. This so-called exemption rate statewide is 2 percent, but it was 6.3 percent in Marin County and 5.8 percent in Sonoma County in 2008, according to the state Department of Health Services. Vaccine "denialism" has become a public health issue.

In the case of autism, a sketchy study by British physician Andrew Wakefield in 1998 set the vaccine blame game in motion. He claimed that a combined measles, mumps and rubella inoculation given to infants was linked to the disease, and his findings were published by a prominent British medical journal the Lancet.

But follow-up research by other teams failed to match his results. In recent years, his study fell apart amid charges of dishonesty, violations of research ethics and a "callous disregard" for the 12 children involved in the research. The Lancet disavowal this past week capped the collapse. How does he feel about the wholesale discrediting of his work? The findings are "unfounded and unjust," he said.

The damage will be hard to undo. Autism, a range of conditions that disrupts communication skills and social interaction, has grown in reported numbers as parents and doctors learned to recognize its symptoms. Nearly 1 in 100 American children is diagnosed with autism or a related condition.

Without any effective treatment - or even a clear understanding of the causes of the disease - parents are primed to be impatient with slow research results and look for villains.

The Wakefield study provided an easy and dramatic message: Shots cause autism. Avoid vaccines and save your child from the troubling condition. It's a scientific fact confirmed by a doctor. His findings expanded on other, equally ungrounded fears about other contaminants in vaccines.

But it was pure quackery. Public health experts fought the message but were savaged by anti-vaccine forces as flunkies of drug companies. Fringe medical figures had a field day, stoking the fears of worried parents desperate for an answer. Hollywood celebrity Jenny McCarthy, the mother of an autistic child, pushed the claims on talk shows and through a foundation she founded. This past week she continued to defend the discredited vaccine study.

The rejection of Wakefield's published work is way overdue. Also overdue are similar rejections from anti-vaccine groups and leaders like McCarthy who are deluding desperate parents with autistic children and leading others to disregard vaccines. Too much money and time has gone into countering these ill-founded claims instead being directed toward research and reliable treatments for autism.

Disposing of a flawed theory on autism is one issue. But there's another that may be harder to end: a disregard for science. That may be the ultimate casualty of a misguided hunt for an answer to autism.

Little victories with a big impact

Emmett John learned to high 5 today. Up to now when I would hold out my hand to high 5 him he would simply put his face or head in my hand. It was kind of our little thing. But today he started actually high 5'n me. He was so excited and I was so excited. We high 5'd all day today. It the seemly little things that have the biggest impact.

LT

How do you handle holidays

When you have a child like Gavin and now possibly Emmett John how do you handle certain situations that typical children need to experience.

Over the years we have learned that Gavin CANNOT handle even mildly stressful situations. He does not handle birthdays well for example. It is way to stimulating. He will be impossible to control for days afterwards sometimes. So we have learned that Gavin just can't have birthday parties. So we have adjust them so that people kind of filter through over the course of the week and he seems to handle that better. Also if we do have a small low key gathering for him (which again is rare) we have it at someone else's house. The reason for that is because we can physically leave the party behind. He seems to respond better to that then having something at home.

This works out well until you have other "typical" kids. Now you have to figure out how to give your "typical" child what he/she deserves and CAN handle without overwhelming the other. We have really struggled with trying to find that balance. Elliott Richard is old enough now that he wants to have people around for his birthday. What do you do when what's best for one is the worst possible thing for the other?

When Gavin gets over stimulated he will meltdown, and I mean meltdown. That tends to put a damper on the day. But if we remove Gavin prior then he feels left out and then we have problems there. It's very difficult to strike a balance. We don't want Elliott Richard to have to give up any more then he has to. His life is already going to be challenging enough with everything going on.

We find that going to families house for Christmas or now Easter usually ends in disaster. Do we split up the family for the holidays and someone stay back with Gavin? Our family always says he fine and they can help but we have to live with him at home.

How have you guys handled situations like this?

LT