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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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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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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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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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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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
PICA Problems…..
We are struggling with PICA again with Gavin. Not sure if we are struggling again or we have just become aware of it again. Are there ways of discouraging it? Should we down play it? Or should we crack the whip so to speak?
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
Emmett John and Sensory Problems
EJ has been really struggling with sensory related things. He is not tolerating clothes right now very well. It have evolved into he doesn’t tolerate his diapers either. He acts like they actually hurt him. We have removed tags and try to find clothes without pronounced seams but the diaper situation is going to be a problem.
I have been looking for my “Easy Button” but I seem to recall them being re-collected when they diagnosed my kids. But if anyone has an extra they want to send me that would be great 🙂
LT
Another long day……
Gavin was in rare form today. He was in “I’m not going to listen to you” mode all day. If I didn’t know better (maybe I don’t) I’d swear he was doing it on purpose.
He just seemed to be all over the place today. I lost track of how many times he ended up in his room to decompress.
I knew it was going to be a long summer but I just didn’t know how long.
LT
The Drama that comes with autism
If you are familiar with autism you probably already know there can be quiet a bit a drama that goes along with it. Gavin can be the king of drama at times. Today he got in the middle of the dog and cat “playing” and he got a tiny barely visible scratch from the cat. Not that it didn’t hurt but he started screaming like he had just been stabbed. Sensory issues are at work here to but honestly it was drama. He was fine for a minute then realized he could squeeze it to the point it would bleed. By bleed I mean basically turn red.
As soon as he saw the “blood” he totally lost it. He kept squeezing so more blood appeared and then he would scream some more. We sent him to his room and said when he is under control we’ll look at it again but we can’t do anything with him acting like that. He melted down on the way to his room. A bit later he emerged and was fine. Great job Gavin.
What’s so ironic about this is when he gets mad he will slam himself into his door over and over. He will hit himself and leave bruises. These injuries he never complains about but the tiny little scratch is the end of the world.
LT
Join the Lost and Tired Network.
I started a community as an extension to this blog. I would like to invite everyone to check it out. I want it to be a safe place for all of us to go and share our stories. You can post what you need to post. I ask that you keep it clean and respect everyone.
I want this network to be able to provide information and support to those in the community who may be struggling. Sharing your story, good or bad may give someone the hope and strength they need to get up and move forward. Anyways, I’m not sure how this will work out but you have nothing to lose.
Here is the link Lost and Tired Network
Knowing is Awareness
Since I started this blog I have wanted to really be able to help others going through what we are going through. There are so many families out there that are “Lost and Tired” just like us. There are also families out there that are just now beginning the journey into autism and have no idea what to do. It’s overwhelming and honestly quite terrifying.
I want to be able to reach out to these families and let them know they aren’t alone. I remember what it was like when I first heard the words “Gavin is autistic”. I felt my whole world come crashing down. That was five years ago. Now we are going through that again with EJ.
Along the way we have learned a tremendous amount. We have educated ourselves and become experts on our children’s conditions. It has become second nature to us. Yet we still find ourselves quite frequently without a clue as to what to do.
I share our story because I hope our experience, mistakes, setbacks and victories can offer something someone who may really need it. Even if all you walk from our story with is the knowledge that you aren’t alone then that’s something. It’s so important that you know that you aren’t alone.
I hope that our story can open the eyes of those who haven’t been touched by autism. People need to know what autism really is and how it effects everyone in the family. The more people that know the better off we all are.
As always thanks for sharing our story and being a part of our journey.
Knowing is Awareness.
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
Raising Autism Awareness?
Where I live in Ohio there is little to no autism awareness. Nothing was done or even mentioned for autism awareness month. There really isn’t anything dedicated to autism at all. How do I fix that. We do have a charter school. Gavin goes there and it’s amazing. There are no fundraisers or billboards. Autism needs everyone’s attention and everyone’s support.
Does anyone have any ideas? Aside from sharing our story with as many people as possible, I don’t really know what to do. I know there are more families out there like us but there is no communication. Do I form a support group or maybe an advocacy group? We have neither here. I know I would like to set up some type a local network providing people with resources and connections.
I feel so strongly that something needs to be done. I just don’t know what.
Any ideas?
Wake up call……..
Marc,
Not trying to single you out but your comment about the video inspired me to write the following. You have many great ideas and I want to thank you for having the courage to share them here. This started out as a reply to my friends comment but some took on a life of its own.
Once again, great to hear from you. You make so many good points. I guess the video has been out a while now but it’s new to me. What I don’t get is the people on YouTube who oppose the video were saying things like “my child doesn’t need cured” or “autism isn’t a disease that needs cured”. People were offended because autism was compared to cancer and aids. The comparison was in the sheer number of people that are effected. I didn’t feel they were comparing wounds or paper cuts. Some didn’t like autism being blamed for failed marriages. I can say first hand that if you don’t think that autism is a strain on a marriage you are living in a fantasy world. Maybe you aren’t married or have some super powered marriage. Maybe you are just stronger then me. But autism is absolutely a strain on my marriage. It won’t beat us but I can see how it could.
Why can’t we admit the effect autism has on our lives. It’s not a reflection on our kids. It’s doesn’t mean we love them any less. It certainly doesn’t mean they are bad or even broken but instead face many challenges both behaviorally and socially. It DOES means that we are strong enough to admit that we might need help or that our family isn’t perfect. I think the courage and strength we all show day in and day out speaks for itself.
Maybe I’m alone in my belief that I want my kids cured. Not because my life would be easier but because their lives would be less challenging and maybe even more fulfilling for them. I thought we all wanted a cure? I was reading that we give only $62 million a year for research and spend $300+ billion on treatment. The numbers may be off but it’s something like that. It’s disgusting how little priority and attention autism research gets. Our priorities are pretty screwed up when as Marc said, we care more about keeping a star athlete on our local team then we do about finding a cure or even easing the burden of those with autism including their families that may need it..
If the explosion of autism continues it will eventually dominate the human population. “A-typical” people will become a minority and eventually be gone. Think about it in the mid 1980’s 4-5/10000 kids were diagnosed autistic. In the mid 1990’s 3/1000 kids were diagnosed autistic. In 2010 1/110 are diagnosed autistic (1/70 boys are diagnosed). Where do we go from here. Pretty soon every child born will be diagnosed autistic. We’re are at a point of no return a precibus if you will. This is a very serious problem that is not being made a priority. Well guess what, it needs to be. For those who think it doesn’t effect them, odds are at some point it will. How can so many people be effected by autism and so little be done about it?
There are actors,actors that get paid more per movie then autism research gets in an entire year. Where is our outrage? Where is our discontent? Where is our voice?
What I really love about this blog is that people are coming forward and sharing how autism has effected them. I’m so grateful for everyone who has shared their story. People need to know what the reality of autism is. The only way they will is if we talk about it. I hope more and more people will share their story, if not here then somewhere. We need to break the silence and make our voices heard. We should make sure autism is a major issue for the next election. We should support those with autism that can be their own voice. For those who can’t speak for themselves WE as parents, siblings, grandparents, teachers, friends or how about fellow human beings can be their voice.
I don’t understand why people wouldn’t want to make their kids better. I love my kids for who they are but they suffer a great deal and miss out on so many things. I want the best for them and if there was a way to take autism away from them I would do it in a second. I know there are many high functioning people out there that will take offense to this but autism doesn’t have as dramatic of an impact on their lives as someone who is low functioning. I am very happy that many people can live with aspergers and even overcome it and live a quality life but many others can’t. They deserve the same chance at life as everyone else. My kids deserve the same chance at life as everyone else. Without some type of effective treatment they may never get that chance.
I encourage you to share your story. You are always welcome to share your story here. I’m honored so many have and I hope many more will. If you need a place to just vent your frustration you’re welcome to do that here to. We all get frustrated and maybe someone here has the answer you have been looking for .
You all have given us your thoughts and prayers. Words cannot express how touched and grateful I am for that. You are all in our thoughts and prayers. I hope that doesn’t offend anyone. I want to help in any way I can.
You are not alone.
LT
Another Long Night
Had a rough nights sleep last night. My back is bothering me to the point that sometimes I actually consider the surgery. However, I can still cope with it for now. EJ and ER both slept through the night for the first time is a while. EJ woke up at 4:30am and wouldn’t go back to bed.
The kids might be hanging with my parents today and G is going to spend the night. ER and I might have a very uncomfortable camp out on the living room floor again tonight.
Lizze has to double her depakote today so we aren’t sure how that’s going to go. She has a doctors appt today at 3pm and we have to go grocery shopping.
Maybe catch a nap later if we’re lucky.
I rebuilt my business website yesterday and today. It’s a work in progress. But feel free to check it out and let me know what you think. http://www.computerrenew.org
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Where to begin……
Where to begin? I have been slacking a bit on posting mostly cause I’ve been in lots of pain and my computer needed to be shown who’s boss.
Lizze had an absolutely brilliant day. She got EJ and G appointments at the children’s hospital. EJ goes later this month and G goes next month. She got a lot accomplished on the medical front today. Great job honey. I know she worked through a tremendous amount of pain today and I’m grateful for all she did.
ER had another nightmare last night that ended with him and I downstairs on the living room couches. Not real comfortable for me but he felt better so…..
EJ has been fighting us on wearing shirts. He can’t seem to tolerate the seams. He totally freaks out until we take it off. We are going to have to find some sensory friendly shirts for him. He woke up tonight screaming again like he was in pain. We finally got him back to bed and we are going there ourselves. Big thunderstorm outside and I have to porch door off our second floor bedroom open. I love storms. I’m laying here and I can smell a house fire. Hope everyone made it out ok. I heard the trucks a bit earlier. Sometimes I really miss the fire department but mostly the guys.
G is really struggling. He just continues to regress and no one seems to know why. It’s like he is becoming more infantile, if that makes any sense. He seems to be struggling with identifying objects. Like we asked him to take the bucket of cars and put them away. Lizze was actually handing him the bucket and he kept picking up a book off the table like that’s what we wanted him to do. We are working to get him whatever help he needs but it takes time. That’s the really frustrating part is the waiting. It’s all we have to do sometimes. We are getting him into camps so he doesn’t lose any of the social skills he learned our the past school year.
Today is my Grandmother’s 85th birthday. I wish we could go see her but right now the kids, mainly EJ and G wouldn’t do well. One of the many sacrifices what have to be made when special needs kids are concerned.
Hopefully everyone is doing better in the morning including myself.
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Lost and Tired 