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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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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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
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?
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
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
Rough Day…
Today has been one of those days, again. It started out with EJ not sleeping well last night (which is later explained). He was up several times last night. On one time Lizze went downstairs to get his sippy and she fell down the steps. I swear this stair case is out to get us. She is really sore, more then usual but ok.
Emmett John spiked a temp this afternoon of 103F. We had to pick Gavin up from school early in order to get EJ to see Dr. H. It appears he has strep throat. We are waiting for the rapid culture to come back. If positive then it’s antibiotics for him. Dr. H doesn’t hand out antibiotics like candy, one of the many reasons we like him so much.
Lizze starts her depakote (sp?) tonight for the migraines. We will have to see how that goes but she’s running out of options for prevention.
Gavin had a good day at school but struggles at home again. He doesn’t get how bad it was he snuck out last night. He just doesn’t play well with others much any more.
ER is just overwhelmed and desperate to connect with Gavin. It’s really sad to he has to go through this. I don’t see any way around it.
I’m sore from everything I accomplished yesterday. I have also been having nightmares every night. Last night was something about having a brain tumor and having to have it removed, but other then that I’m feeling good.
LT
Thank you for sharing our lives. LT
Autism,Consequence and Needed Advise
I posted last night about Gavin sneaking out of the house. Lizze and I have been talking and decided that there has to be some kind of consequence for his decision. I just don’t know what that should be and if it’s even to late to do it. We can’t let it go unaddressed but nothing seems to work.
I don’t think he would typically be able to escape without us knowing but it’s possible. Any ideas? Talking won’t work. Going to bed earily won’t either. Help.
LT
Thank you for sharing our lives. LT
Progress
Today has been productive so far. I have gotten through several loads of laundry, sorted and folded. Lizze got Gavin off to school this morning. Her knee is really bothering her today so I want her to take it easy. She is napping with the baby right now.
ER and I just split an orange and are going through more laundry and just hanging out before lunch. 4 more days of school left and that’s it for the summer.
Going to try to get as much done while I have this strange amount of energy and motivation.
LT
Thank you for sharing our lives. LT
A summer of autism
School is out in 4 or 5 days and the truth is I’m scared. I don’t know for sure what the summer agenda is. As much as we love Gavin, and we do, we can only take so much Gavin at a time. My mother is a saint, you can ask anyone who knows her. She loved summer break and snow days. She loved having all 6 of us home at once.
However, she didn’t have autism to contend with and we do, possibly x3. My mother had endless energy and motivation and we have neither. I had a relatively safe neighborhood to grow up in and lots of nice kids to play with. We have the “relatively” safe neighborhood, save for a few ignorants who call my special needs kids “retards”. It’s going to be a long summer.
I do have some ideas to survive it this year. My wife and I are going to try to line up summer camps for Gavin. Not overnight but day camps. There is even funding available to pay the fees if you look around for it. These camps help with social integration and self esteem. Gavin went a few years ago and really liked it. We had problems with manipulation but nothing major. He had fun and we got a much needed break.
You can check with your local MRDD for information on camps and even funding if needed.
We also have plans for trips to the zoo. We are choosing a local zoo so we can make it a shorter trip in order to accommodate our kids needs. Fishing is also on the list as well as camping. These things are all relatively sensory friendly. We are also have bonfires this summer and cook out. Maybe teach them so fire safety at the same time. Sensory friendly pizza and movie night is also going to be a weekly thing if possible. All these things (with the possible exception of camps) are cost effective and sensory friendly ideas to help make it through the summer.
The one thing I do want to focus on this year is Lizze and I. It’s so important to take care of ourselves and our marriage. My goal is to have a date night each week. Even if it’s movies and Chinese. We have focused so strongly on our kids that we have forgotten to take care of ourselves. I can imagine that many of you are the same way. We get tunnel visioned into fighting for our kids that we lose track of our own wellbeing in the process. This is a well intentioned mistake because if we don’t take care of ourselves who will take care of our kids.
Summer vacation (which never really seems like a vacation to me) is a very stressful times for specials needs parents. If we put our heads together we can come up with and share ideas for making it a more fun, less stress and possibly even (dare I say it) enjoyable summer.
Please feel free to share your thoughts on my ideas and even share some of your own. Your ideas may make a world of difference to a special needs (or really any) parent that is dreading the coming summer.
LT
Thank you for sharing our lives. LT
Monday is finally over….
Monday is almost over. Gavin wasn’t feeling well last night do he stayed home. He didn’t have any meltdowns but was in manipulation mode all day. He was driving me crazy. I know some of you out there understand what I’m talking about. I was just constant, this or that. It just wore on me, especially since I didn’t get to go to bed till 6am this morning. ER is having nightmares almost every night now. He says something about Zombies and that’s all I can get from him.
They only thing I can think of with Zombies is that insanely addictive game “Plants vs Zombies”. There isn’t anything scary in the game and we haven’t played it in months. There was a Garfield movie on Netflix the other day that had “sorta” Zombies. Anyway he is defiantly struggling at night right now. Dr. Patti says it’s anxiety from all that is going on.
I have decided last night that if I can’t fix some of these things then I can at least try to make the house more comfortable. So I’m going to try some things like replacing the couches that cause me to much pain to sit on due to the lack of support. We can get then used at the local Restore. For pretty cheap. I want to start doing things like that just to try to improve the quality of life just a bit. Maybe take the edge off. The new couches will really help me because the ones we have are not good for my back at all. If I’m in less pain then I can do more. I told Lizze I want to get some of this started by the middle or end of June.
I’m also going to more aggressively seek out new business. I haven’t wanted to take on a whole lot right now but I want to accomplish some things this year and need the extra funds to do it. So if you need your computer repaired and your in the area look me up http://www.computerrenew.org. 🙂
ER has already been up half a dozen times so I’m going to try get some sleep.
I’ll try to start posting more since I’ve been slacking the past few days.
LT
Lost and Tired 