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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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
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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Autism and the school year
So I have been thinking. Wouldn’t Autistic children benefit from a year round school year. It would prevent or help to prevent the loss that occurs over summer break. The kids love and need their routine. It would also serve as a sort of respite for parents.
Gavin would benefit from this tremendously. He loses far to much progress during summer break. I know funding is an issue but there are always ways around that. Just a thought.
LT
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Autism and Discipline: How do you manage?
Disciplining your kids can be tough for parents sometimes. But what if your child has Autism? Navigating the world of Autism is like trying to put one of those generic puzzles with no picture together. You are often times flying blind. I can’t tell you how many times I have felt lost and defeated.
In our case with Gavin, he is a quagmire wrapped inside an enigma. He has so many other mental health issues that it really makes things difficult. How do you hold him accountable? What are the standards and are they set to high or to low? What is he actually capable of doing? These are all questions my wife and I have asked for years. Just when we think we have it figured out we realize things like, he has been playing us.
One thing about Gavin is he’s truly gifted in the art of manipulation. I really mean that. He’s that good. Unless we always assume he’s playing us it’s all but impossible to tell the difference. I bet so many of you out there know what I talking about. Should we always assume he’s up to something because that feels wrong? How far is to far to push when there are no clearly defined limits?
I long for the day I go to the mail box and find the instruction manual for Gavin has finally arrived.
LT
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
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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Somethings Up With Gavin
Something is going on with Gavin. He’s really off today and that’s saying something. Today was the first day of summer break. All I can say is 1 down 103 to go. I’ll be honest I’m not looking forward to this summer. We are getting Gavin in to see the doc’s again because he is really starting to worry us. My first thought would be over medication but he’s not over medicated. He is however still regressing. He brushes his teeth and you’d think he’d been finger painting with the tooth paste not brushing his teeth. He can’t find things. He’d look for his backpack (which is on the couch where he put it) and can’t find it. He will even pick “IT” up and look underneath it.
His problem solving skills are slipping away as well. This is the longest he has regressed. The doc’s have told us there is nothing we can do. He is just going through these things. They are correct we can’t stop these phases any more then we could stop the other kids from walking or crawling. We weren’t worried because he goes through these phases and they just work themselves out and when the dust settles we’re pretty close to where we left off. This time does seem different though.
Looks like it’s back to the drawing board with this one.
Thank you for sharing our lives. LT
Autism and Sexuality
Gavin is really starting to struggle. He seems to have significantly regressed with no sign of slowing down. The frustrating part is that he could be playing us. He is extremely manipulative.
Lizze went to the school to pick up Gavin today and chat with the principle. While they were talking Gavin very inappropriately put his arm around Lizze and grabbed her butt (not letting go) and the laid his face in her breasts. She handle it well. They had the private parts talk again. We have to get this under control if that’s even possible. He does this type of hyper sexual thing pretty often and “no” it’s not an innocent thing. There is intent behind it.
We will have to increase our vigilance in this area.
Thank you for sharing our lives. LT
It Rained……..Inside
So this morning it rained. I happen to look behind our tv and I noticed water dripping inside the window. The storm windows were closed cause the air was on. I looked again and the windows had actually filled with water. When I open the inside window the water poured out onto the floor. The water was dripping through the wall into the window. I have all the computer business hooked up over there but we caught it before they were damaged. That would have been devastating. I have built up a lot of stuff for the business over the years and I would not have been able to replace for a bit.
My dad and brother came over and laddered the side of the house and fixed the clog in the gutters so it was no longer running down the wall. Thanks Big Time for the help.
Had to move everything around so the house is torn up but ok. Could have been much worse……
Thank you for sharing our lives. LT
Perspective: From the heart of a special needs father……
Perspective: From the heart of a special needs father:
You are lucky because you never use words like autism, spectrum, bipolar, sensory, anti-psychotic, manic or nonverbal in relation to your children and may not even know what they mean. I am all to familiar with them and wish I wasn’t.
You are lucky because your kids have friends, even if they could pick them better. Mine don’t have any and that breaks my heart.
You are lucky because your kids curse and are disrespectful. Mine have never said a word and I would give anything to hear him say Daddy.
You are lucky your kids wear clothes even though you can’t stand their tastes. Mine can’t stand the feel of clothes on their skin.
You are lucky you have to take your kids to practice and run like crazy shuttling them around. I will likely never have that opportunity.
You are lucky you can’t get your kids to eat their vegetables. I can’t get mine to stop eating things that aren’t food.
Your are lucky your kids have a boyfriend or girlfriend even if you think they are wrong for each other. Mine likely won’t ever have the experience.
You are lucky your kids break curfew or sneak out to a party. Mine won’t even be invited.
You are lucky to go places on the holiday’s even if you’d rather stay home or can’t stand your family. My kids can’t handle the holiday’s let alone the get together’s.
You are lucky to have extended family and even friends.
Most of ours have long since left because our life was to complicated.
You are lucky your kids will build their own lives. I’m terrified of what will happen to them if I die.
Perspective is an amazing thing. Hug your kids and never take anything for granted.
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
Am I Talking To Myself?
Am I talking to myself? I sure feels like it today because no one is listening. I have lost track of how many times I’ve repeated myself today. It’s 9pm and none of the kids are sleeping. Lizze and I were going to have our first date night and its been a disaster. EJ is screaming and I can’t help Lizze because ER and G will not stay in bed.
I don’t know what is going on in this house but clearly it has to stop. It’s 85 degrees here and Gavin is in sweat pants, a tea shirt (long sleeve) and a hoody. He freaks out cause his window is open. We give him the choice, he either strips down or he has to have the window open or fan on. ER’s sleep cycle is completely screwed up. Lizze and I have not had a single night were we have been able to sleep through in years. WE NEED A BREAK. WE NEED HELP. WE NEED SLEEP. I think that about sums up the night so far.
The end to a another day.
I made it through the day in one piece. When you live with special needs kids that’s saying something.
I want to thank everyone for the constant support and compassion. Things are pretty tough for us now but we somehow always find our way out the other side. Good or bad. For better or worse this is my truth.
Thanks for taking the time to share our lives as well as your own. I really enjoy the dialog and hope it continues to increase in the future.
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
Honesty Post
Look I’m going to be completely honest. Everything has gone down hill for me this evening. I thought I was holding it together but I’m done. Gavin is driving me absolutely CRAZY. He just can’t do anything like he’s supposed to. I’m only talking about things I know he is capable of. Simple 1 step tasks seem like we are asking him to reinvent the wheel. He stalls and stalls all the time instead of just doing what he is freaking asked. Everything seems like a game and the game is manipulation. I swear he plays head games with ER. He wants to play then doesn’t want to play. If he does play he is the only one that is allowed to have an imagination. Anything ER imagines is quickly shot down by Gavin because “it’s not real”.
As a parent it’s hard to watch this happen. However, if I’m going to be completely honest, it’s harder for me because ER is my first born. I raised and finally adopted Gavin. It’s just not the same thing. I know how it sounds believe me. I also know how big of a monster it makes me feel like. It’s the truth though. I have this overwhelming instinct to protect ER from Gavin. I have to be extremely careful not to play favorites but it’s getting harder. EJ never really interacts with Gavin but when he does it’s the same thing. Gavin actually complains when EJ cries. He actually complains. I realize it’s probably sensory but HELLO, WE ALL have to listen to and feel every single one of his God Damn meltdowns. I just want to scream “hello pot, meet kettle”.
I sound juvenile but I can’t even explain how overwhelmingly frustrating it is. I just get to a point where I can feel myself cracking into pieces. I don’t know how we are supposed to know what to do? Who do we cater to? I don’t see a way to do this without “playing favorites” so to speak. Sometimes I feel like just giving up. Nothing I can do will make things any easier for anyone. Gavin is always going to be difficult. Elliott Richard will probably always be trying to connect with his big brother even though he just keeps getting shut down.
I have no idea what’s going on with Emmett John. Will he ever talk? Is he going to regress and slip away like Gavin? This scares the shit out of me every single day. Are we doing enough of the things right that we are making a difference? How do we even know? The children’s hospital still hasn’t gotten the paper work to get things started. That paper work has been faxed at least twice by different people and even mailed weeks ago.
All of this makes Lizze’s condition worse. Fibromyalgia feeds on stress. Our lives have become a freaking all you can buffet for it. There is no way to take her pain away or even make it better, even a little. This kills me. It’s like waking up everyday to a nightmare.
One of the worst parts is that I KNOW very few people actually know what this feels like. I hear how things could be worse. Worse is a relative term, it’s different for everyone. For me I feel like at times we have finally hit rock bottom only to have the floor collapse and we continue to fall. I don’t want this for my family. I wouldn’t even want this for my worst enemies family.
There are times in dealing with things that I think everything just might be ok but tonight everything just seems to be falling apart around me. The things we need to help us just aren’t available. At this point I have talked to some of my family and asked them to get certified as care givers. Then instead of complete strangers getting paid to provide respite, family can get paid to do it instead. I’m hoping someone agree’s to do it. Everyone is living there own lives though and we don’t always fit in. The kids don’t have nearly the relationships with my siblings that I had hoped they would. We are the only one’s with kids. I had hoped that my brothers and sisters would be active parts of their lives but they aren’t really. That hurts. We need a break. That’s the best help we can get right now but it’s also the hardest to come by.
LT
Thank you for sharing our lives. LT
Lost and Tired 