Breaking The Silence of Autism

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We have moved.

We have finally moved to our new site. Please note the new address. Re-direct your bookmarks to: http://lostandtired.com

Please move with me. I hope to see you all there.

LT


Blogger isn’t going to work. So never mind.

Blogger isn’t going to work. So wordpress it is. I’ll self host at a later date.


Long night

Elliott fell asleep awhile ago but I just can’t get comfortable on this couch. Watching the fish hoping to fall asleep but it’s not working. You get to a point when you are so tired but yo can’t sleep. Sounds funny but it’s true.

Good night, hopefully

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


I want a do-over for today

So I go to my mailbox and get a letter from the bank that we over drafted. So I log in to my account to see what happened. I looked over the account and ALL activity. I should have never over drafted. I was never over my limit at all. The over draft or should I say over drafts (4 total) however have caused lots of over drafts themselves.

I have a call into the bank and I’m sure they will figure it out but until then I have lots of money but it looks like this. “$ -xxx.xx”. 😦

At least they didn’t screw up the business account.

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Gavin, Gavin, Gavin

ER was playing Toy Story Mania on the computer. Gavin started telling him what to do which makes ER frustrated. I told Gavin he had to stop or he was going to his room. BAM, not 5 mins later he’s yelling at ER to get more points. So he went to his room. We try to be as consistent as possible. He needs to abide by societies standards and laws in the real world. So we have to teach him while we can.

LT

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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


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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?


Sleepy Me

Finally getting some sleep.

LT


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


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