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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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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What did you have for dinner?
-Disclaimer for Trisha- don’t read this if you are going to be eating. I guess that would apply to all.
So Gavin has been having GI issues. Dr. H has us keeping tabs every time he goes potty. We have to see it before he flushes. We also keep a food log of what he’s eating as well.
Gavin had another GI “episode” today. So I asked him if he has been eating anything that we haven’t given him to eat? He began nervously pacing so I knew this wasn’t going to be good. So I start questioning him. What are you eating? He says “nothing”. Eventually he says he has been eating paper. So we start the process again. What else have you been eating, I asked? “Nothing” he says, just paper. Later he tells us he is eating the tags off his stuffed animals. We do the exact same process one last time and learn he is still eating the stuff between his toes.
We were forced to gut his room. All he will have in there is him bed,pillow and blanket. We also found he had been eating some of his blankets so we got rid of those as well. I don’t know what the hell we are supposed to do. The scary thing is that these are the only things we got him to admit to. There are also large amount of paint missing off his walls and baseboard (not lead based). We need a “clean room” to stick him in. There is no way we can stay on top of him constantly, which he apparently needs.
I feel bad removing all his things be we have to protect him from himself. Gavin has no real quality of life. We have to control everything because he can’t be allowed to endanger himself. Right? Should we let him do what he is going to probably do anyway? Should we let him get sick and need his stomach pumped? Does he have control over this or is he just doing this to push me and his mother over the edge? Honestly I don’t know.
Anyone have experience with pica? Can we discourage this some how? Should he be punished for doing this? I have no idea what we should do.
LT
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Racing thoughts……
I came up stairs to go to bed and EJ is peacefully sleeping. In the next few hours he will most likely start screaming. I wish I knew what was wrong. I wish he could tell us.
I wonder if he will ever speak. If he does, what will his first word be? Sometimes the pain is just to much to bear. I wish the rest of the world would understand what this is like. I be happy if just the part of the world I crossed paths with understood.
I wish bill collectors would understand that things are really rough for my family at the moment and stop asking for money I don’t have to give them. I wish there was a visible sign I could wear that would show everyone that I’m barely holding it together right now so please be kind to me.
There is a movie called “powder” the kid as the power to make people feel what you are feeling. I wish I had that power sometimes. It would help other to better understand the constant emotional roller coaster that is Autism.
Right now I just wish I could stop thinking and worrying about tomorrow long enough to sleep…
LT
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Gavin Update
Well we finally got an appt for Gavin to see the doctor. He goes tomorrow night. I really hope they can help us figure out what is going on with him. Today walked into a wall as I passed him in the hall way. I have no idea what to expect when we go.
Maybe it’s medication related but I doubt it. I’m paranoid sometimes that we don’t feed him enough. But his doctors all say he is good. We have to restrict him because he can’t regulate himself. It doesn’t feel good to deny your child food even if it’s in their best interest.
Hopefully we will have more information tomorrow night to pass along. Until then we will just buckle down and make it through as we always do.
LT
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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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Waiting
We are here now and waiting. The waiting is the worst. I feel sick to my stomach… I hate to say this but we are past the point will we are going to receive good news. It’s a matter of figuring out how bad things are.
He is cute, am I right? Of course he is. He needs a hair cut but that’s a battle we haven’t picked yet.
LT
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Please say a prayer
Please say a pray today for us. EJ goes to the Children’s Hospital today to see the Neuro/Developmental Pediatrician. We are now officially on the road to his diagnosis.
We’ll know exactly how far behind he is developmentally. Hopefully we learn what we can do to help him through this. I’m sick to my stomach right now. This is going to be an emotionally exhausting day. Please say a prayer.
LT
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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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Holy crap, oatmeal is losing effect..
Houston we have a problem. Oatmeal, which has been the only deterrent is losing effectiveness. He now just stalls until there’s no longer a point. The only thing we would have left to do is adjust it so that if he doesn’t finish in a predetermined amount of time then it gets pushed of to the next meal. The problem with that is he will choose not to eat. It will then become a power struggle.
Before anyone says that rewards work better then consequences be aware the rewards or incentives DO NOT work. Gavin exploits the situation and then we have to stop. For example if we reward him for getting his meltdown under control then he will begin having the meltdowns just to be rewarded for stopping. So consequences it is then.
I feel torn because part of me wants to push the oatmeal and win the power struggle. We will provide him with a healthy (oatmeal) and he can make the choice to eat it on not. He will only have oatmeal as an option until he actually eats it. We only give him a small bowl so it’s reasonable.
On the other hand he could take it pretty far. How far are we willing to take it? The other issue is if he doesn’t eat the oatmeal (thus skipping the meal) will that encourage him to consume non-edibles? We already struggle with that.
If we decide to pick this battle we would have to see it through. He would need to understand with no uncertainty that we mean business and that we will not back down.
I wish just one thing with him would be just difficult and not impossible.
LT
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It has been an “oatmeal” kind of day.
It’s been a rough day but Gavin has been very difficult. Gavin has listened at all today. He just seems to ignore the rules anymore. I swear to God if I hear him say “I’m sorry” one more time my head is going to explode. He’s only saying sorry because he got busted. He doesn’t learn from his mistakes.
We are seeing more of the mental health issues at work here. These problem’s go way deeper then Autism alone. I honestly don’t know how much more of this I can take. I gave him chance after chance today and he still choose poorly. So he had oatmeal for dinner. He had almost 30 min to eat a really tiny bowl. He didn’t cause he was stalling. What he didn’t know was that he would have gotten desert if he had eaten it. Honestly he had more then enough time to eat what was given to him. Again he choose poorly. At least it’s good to know the oatmeal is still effective.
LT
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Gavin
I don’t know what’s going on with Gavin. He just doesn’t let up. He doesn’t seem to be able to listen. He has really lost the ability to retain things. We have to constantly be on him about everything. I feel bad because it feels like we need to cut him some slack but I don’t know that we should.
For example: Tonight Gavin wanted a cookie my mom had brought over. We told him after dinner. He ate dinner and wanted the cookie. We said wait a minute and we’ll get it for you. He then went into the kitchen and took what he wanted. When we stopped him he said he thought we told him to. We were very clear in our instructions to wait and we would get it for him.
Because he didn’t listen he didn’t get his cookie. He was upset but it’s got to be this way. These kinds of things are happening more and more often. Is he just making bad choices or is this out of his control? He seems to have the short term memory of a goldfish. I mean no disrespect to Gavin but that’s what it’s like. He can’t seem to do the simplest tasks any more.
He also seems to be trying to “connect” with us. It’s quite strange and awkward. He just won’t stop talking. Honestly, it’s very uncomfortable. He’s seems to really be trying to engage but he’s cramming everything down our throats. He won’t stop talking, ever. Maybe he’s manic? Who knows. He just wears on me. I wish I didn’t feel this way but I do. Part of the problem for me is I don’t know where he is coming from with any of this. Is he sincere? Is he playing us? These are valid questions because he has a very long history of manipulation. I’m so tired and I just want tomorrow to be easier.
LT
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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 PICA
I spoke a while back about Gavin eating tooth paste. We adjusted where it was kept and watched him closer. Well apparently he is now eating the tooth paste that is crusted over in the sink. He is also cleaning out the drain and eating that also. We try to keep the sink clean but don’t always stay on top of it.
The other problem is that he will to this when he asks to go to the bathroom. He apparently doesn’t always need to go. He’s looking for tooth paste. We are going to have to supervise is use of the bathroom period.
I just never ends……..
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
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
Breaking News. Possible treatment for Autism
Saw this posted on facebook. This is a great find and a MUST READ……
Doctors find way to reverse autism effects
Keep this story going…..
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
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
Lost and Tired 