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

A bit of relief........

Last night was pretty nice. I finally got to take something for my back. Some pain killers,muscle relaxers and motrin. I was out by 7:30pm. I haven't taken anything for my back for a really long time. I slept on the couch and at some point I ended up with ER draped across my legs. I kept trying to shake him off cause - though he was Maggie. I slept in and it was great. I woke up to Gavin having a meltdown over something I can't remember. But it was still nice to not hurt even just for a little while. Thanks honey.

Thank you for sharing our lives. 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

Gavin's Continues Regressing

Gavin is acting strange, even for him. :e walks around with his eyes almost closed. He mumbles when he talks. When he talks each word is like 15 seconds apart.

He said he wasn't feeling good and his tummy hurt. He looks like he's not feeling good. However, he could have been saying that to get away from ER. Either way we sent him back to bed to get some rest. I don't know if he's eaten anything he shouldn't have. Lizze caught him eating his toe jam the other night. So your guess is as good as mine.

Now he wants back down and claims his stomach never hurt. I'm home with the kids alone so I can't battle him right now. I sent him back to bed. Cause if he did lie about being sick then he needs to meet the consequences for that. If he really is sick then he needs his rest. It's kinda win win. I don't want him eating anything because if his stomach does hurt then he will make himself vomit. He does that in this type of situation because he thinks he has to vomit.

Lizze should be home any minute now. EJ is still sick and fell asleep on me on the couch. ER was up all night again. Lizze and I took turns with him. Needless to say no one slept well. Again.

LT

Thank you for sharing our lives. 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

Losing a son to autism: A father's grief.

I hate autism. I hate everything about it. My kids are not autism. I hate autism for doing to them, to us what it has done. Autism is a thief. It's a coward. It sneaks in and steals our kids right out from under us. Autism is a cruel and unforgiving disorder. It takes relentlessly and never stops.

My Story

I hate hearing how it could be worse. What is it like to have autism in our lives? As a father, I don't know if I even have the words to describe what it's like. I'm sorry if I offend anyone with this but it is what it is. Gavin is our 10 year old son. He died at age 3. That's what it's like for me. He has a rare, regressive form of autism. Sometime after his 3rd birthday a switch flipped and the Gavin we knew and loved was gone. I really mean that. The child that was, no longer existed. What remains is a shell of who he was.

Unless this has happened to you, please don't judge me. Gavin was my everything. He wasn't even mine but to me he was. We went everywhere together. We went fishing and to the playground. We had camp outs in the living room. One day all that was gone. He would no longer connect. It was like he didn't know us. He would hug us out of habit. I felt the difference. He was gone and we didn't even get to say good bye.

The truly cruel part of his autism is that for many years after we would get these glimpses of him. It was like someone briefly waking from a long term coma, confused about what happened but there. He would somehow find his way out. It never lasted more then a few moments and then he was gone again. Every time this happened it was like losing him again for the first time. It was like watching him die over and over again. He would come back and then go away again. Very few people know what that feels like. It was torture. Having someone you love taken away is a horrible thing but imagine having them taken away over and over and over again. Watching helplessly as something dragged them away into the dark and there is NOTHING you can do. You actually grieve as though they are dead, because in reality the person they were is. The person you knew and loved is gone. All you have left is the physical body, a shell. The essence of who they were no longer exists.

Now imagine having finally come to terms and then out of nowhere they come back. You don't know what to do or say because there's no time to even process it. You finally figure out what to say and they are gone. All the things I had wanted to say if I had the chance slip away unsaid. I don't have to imagine anything. That is my reality every single day. Every single time I grieve like it's the first time. I don't know how else to explain it.

You want to know how terrible I am? Do you want to know how weak I am? After awhile I actually prayed for him to stay gone. God forgive me, I just couldn't take it anymore. The pain I experienced each and every time was unimaginable. It's like a nightmare you can't wake from. I can't explain what it feels likes as a husband and father to experience this. You see them physically there but that's it. They don't connect on any meaningful level and everything becomes mechanical, emotionless and empty.

Gavin hasn't found his way back in many years. There are so many things I want him to know and I will never have the chance to tell him. Most of what I say anymore has little to no impact on him. I can't have a conversation with him because he doesn't pay attention. Everyday I have to see what I no longer get to have. The pain never goes away. Anyone that says that it does is either lying to you or themselves.

Now let's talk about guilt. Not only are you grieving but the guilt is unbearable. You feel like it's you fault. You might not say it but deep down you blame yourself. If I had only been a better parent. You question everything you've done. You try so hard to remember when it happened but you can't. I have one memory that haunts me. It's the last memory of Gavin I have. He was 3 years old and I took him fishing for the first time. He actually caught a blue gill all by himself on his little fishing rod. We were fishing off the gazebo at the time. I remember him sticking his head between the spindles on the outside walls talking to the ducks. I actually have a picture of that. I was tired because I had just gotten off of a 48 hour shift as a medic. He wanted to stay and play with the kids on the play ground. I said no and we went home. That was it. I never had another chance after that. He started slipping away shortly after. The worst part for me is I never got to say goodbye. What would it have hurt to let him play a little bit. I took that from him.

I know all about guilt. I hate everything about my relationship with Gavin now. It's tense and volatile. I have no patience for him anymore. His behaviors, though not always his fault have put a tremendous strain on our family. I'm often resentful anymore for the impact this has had on Lizze's health as well as pur other kids.

But what if the truth is I resent the fact that his physical person is here and that's all. What kind of person let alone father does that make me. It just hurt's to much sometimes to see him but know he isn't there anymore.

This is what it was like for me to lose Gavin. This wasn't easy to write but I just needed to say it. Maybe it explains why I am the way I am. Maybe it gives you a better understanding of what it's like to be me. Maybe you know someone going through this also. Maybe now I won't have to keep explaining why we do the things that we do. Maybe I can just leave this here instead of carrying this around with me.

LT

Thank you for sharing our lives. LT

Autism: Safety Issues

We had some tree trouble today. My neighbor came over and help remove some large damaged limbs that threatened my neighbors property. Gavin had been in bed for a bit and Lizze had the other two in our room hanging out.

I just happened to look to the front of the yard and there is Gavin walking around. He let himself out of the house and into the yard in his BJ's. He has only done this once before. Last time we caught him in the alley going through peoples trash looking for things to recycle. We have to watch him much closer now. This kind of increases the risk now. He can't just let himself out that is way to dangerous. This all goes back the continued regression we are seeing.

We already have all the doors tied into our central alarm. When a door opens it's announced but you cannot hear it from upstairs. We'll need to get an extra panel upstairs in our room so we can hear it. Going to be re-evaluating some things now. Gonna be. A long summer.

LT

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

Emmett John Update

Today we finished all of EJ's paperwork. He is now qualified as MRDD. I wasn't expecting that today. That really kinda kicks you right in the gut to hear that. On the positive side that does give us FSS funding to make the house safer and provide for the sensory needs.
Each step we take that gets us closer to the final diagnosis just makes everything all that more real. It's one thing to know something but it's another thing to "KNOW" something. If that makes any sense. I don't think there is any way to actually prepare for the moment of truth that is around the corner. I wouldn't wish this on anyone.

If you are a parent of typical kids don't ever take that for granted it can be taken away when you least expect it even if you do everything right.

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

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

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.