Jace had his upper GI yesterday morning and now we are just waiting on the full results. They woman did tell us that she didn't see an obstruction but that we would need to wait for the radiologist to read it. So we are waiting.
our trip to Wichita has been rescheduled. We will get into town Thursday evening around 8am and will leave Monday morning to head home. So it's a short trip but atleast we will get to come in. last time we tried to schedule this trip it flooded so lets hope nothing goes wrong this time! :)
Brian is pretty stressed with his job right now. He had no training or orientation at Rockwell and then almost immediately got thrown into a team lead job. He is trying to figure out how they work and where things are and how things are done, with nobody to help. It's really starting to affect him. I'm not sure what to do about it, and don't really know how to help. All I know is he's constantly run down and in his own little world, distant from me lately. Hopefully the trip will give him a much needed recharge.
Friday, June 27, 2008
Thursday, June 26, 2008
Jace update
Yesterday Brian and I took Jace to the GI doc. He did some lab work, and this morning Jace goes to St. Lukes at 8am today for an Upper GI. What they are trying to rule out right now is a blockage, ulcers, or such. The next step after that is another endoscopy. So hopefully we will know something soon. He is also putting Jace back on a daily medicine to try and help control a bit of the acid.
Tuesday, June 24, 2008
YEAH YEAH YEAH
Ben is officially on the WAIVER wait list! I'm am BEYOND excited about that. We got the papers and his social worker called and said he's on the list! Now we wait. It can be a long wait, and that's ok. As long as we know that our paperwork is done and he's approved and that he is officially on the list! I have many complaints about Iowa (the weather for one) but when he gets the WAIVER it will ALL be completely worth it! The day he gets it I will be enrolling him in private therapy! YEAH!!!!!!!!!!!!!!!!!
Updates
Jace ~ He went to the doc yesterday. They are going to put him back on prevacid and have also given him a prescription for nausea meds to be taken as needed. Our doc was able to get thru to his GI doc so we are going to get him in there as soon as possible. They are also going to send him to a dietician to try and figure out a specific food plan to get him on.
Me ~ I had my appointment with the hand surgeon yesterday. We both agreed that the best option at this point is the surgery. the braces have helped a bit at night, but not enough. I'm still having alot of pain and numbness and dropping things all the time. So they will call me today to get that scheduled. i've chosen to have both hands operated on at the same time, to get thru the recovery part faster.
In other news...Sunday Brian took the older 2 kids to the baseball game. the kids got free gloves, and after the game they got to go on the field and run the bases. They got a certificate for crossing home plate.
Last night we took all the kids on a picnic and to the local splash pad. They had fun. Ben wasn't sure about the water and spent the whole time running circles around the perimeter. Ariana went in a bit, but was happy on the outside watching and walking around.
Other than that not much exciting around here. Today is housework day. I'm not super excited about that. I hate cleaning house just to see it get trashed 5 minutes later! :)
Me ~ I had my appointment with the hand surgeon yesterday. We both agreed that the best option at this point is the surgery. the braces have helped a bit at night, but not enough. I'm still having alot of pain and numbness and dropping things all the time. So they will call me today to get that scheduled. i've chosen to have both hands operated on at the same time, to get thru the recovery part faster.
In other news...Sunday Brian took the older 2 kids to the baseball game. the kids got free gloves, and after the game they got to go on the field and run the bases. They got a certificate for crossing home plate.
Last night we took all the kids on a picnic and to the local splash pad. They had fun. Ben wasn't sure about the water and spent the whole time running circles around the perimeter. Ariana went in a bit, but was happy on the outside watching and walking around.
Other than that not much exciting around here. Today is housework day. I'm not super excited about that. I hate cleaning house just to see it get trashed 5 minutes later! :)
Monday, June 23, 2008
Worst Morning wake up ever
The kids slept in a bit this morning. I took my shower and came downstairs for a few minutes on the computer. Emily comes down saying that Jace is up and that he threw up during the night. i go upstairs and have never felt so sick in my life. Jace got sick in the middle of the night all over his bed, 5 books on his bed, the floor, etc. The smell is honestly like nothing I have ever imagined.
He went out yesterday. Brian took the older 2 kids to a baseball game. He had a hotdog. It's the damn curse of the hotdog again. Every single time he has a hotdog he gets sick. I don't understand it, I don't know what to do about it.
this is beyond out of control. I think I'm going to call his GI doc and get him in, today.
He went out yesterday. Brian took the older 2 kids to a baseball game. He had a hotdog. It's the damn curse of the hotdog again. Every single time he has a hotdog he gets sick. I don't understand it, I don't know what to do about it.
this is beyond out of control. I think I'm going to call his GI doc and get him in, today.
Thursday, June 19, 2008
Experience of a lifetime
last week my debit card was missing. I called the bank and they blocked the card (brian's also, since it's the same account number) and said we would receive new ones. 2 days later i found it and didn't even think about it and stuck it in my wallet.
fastforward to tonight.
we decided to go out to dinner. we went to applebee's. we ate, the bill came, i stuck my card with it and didn't think anything about it. the manager comes out saying my card was rejected as being reported as a lost or stolen card. i thought OH CRAP. i had completely forgotten. they don't take checks. so i quickly called my bank, and they informed me they couldn't unblock the card and that there was nothing they could do. We decided that i would leave and go to the grocery store and try and cash a check there. as i was getting up to leave this young couple at the table, said they had heard what was happening and would like to help. they took our bill and paid the whole thing for us. we tried to offer them a check of anything at all to reimburse/thank them and they said to just pass it on! we couldn't believe it. i was in absolutely shock. i think that we all told them like 100 times thank you. they just said pass it on.
i feel forever indebted to these people. it made me almost cry. i'm soooo happy to know that there are still such good amazing people out there in the world! I just had to share what happened and you can dang well guarantee we will for sure be passing it on!
fastforward to tonight.
we decided to go out to dinner. we went to applebee's. we ate, the bill came, i stuck my card with it and didn't think anything about it. the manager comes out saying my card was rejected as being reported as a lost or stolen card. i thought OH CRAP. i had completely forgotten. they don't take checks. so i quickly called my bank, and they informed me they couldn't unblock the card and that there was nothing they could do. We decided that i would leave and go to the grocery store and try and cash a check there. as i was getting up to leave this young couple at the table, said they had heard what was happening and would like to help. they took our bill and paid the whole thing for us. we tried to offer them a check of anything at all to reimburse/thank them and they said to just pass it on! we couldn't believe it. i was in absolutely shock. i think that we all told them like 100 times thank you. they just said pass it on.
i feel forever indebted to these people. it made me almost cry. i'm soooo happy to know that there are still such good amazing people out there in the world! I just had to share what happened and you can dang well guarantee we will for sure be passing it on!
Wednesday, June 18, 2008
Cabin Fever
We are here and are ok. It's just been kind of a lonely few days. We haven't gone into town or really gone anywhere. We've just been home. All of my friends are on the other side of the river so it's been impossible to get together. Two of my good friends, literally had to evacuate so they haven't even been in town.
Benjamin started school on Monday, and today was his 2nd day. We had our 3rd IEP mtg today and hopefully we FINALLY have it all figured out. Ben will be going to school on Mondays and Wednesdays from 9am to 11:30. This is for his summer extended year. So we ended up with 5 hours a week. I couldn't believe it! He seems to be doing well with his 1 on 1 associate so I'm really relieved about that.
Emily and Jace are doing ok. They are getting bored and fighting quite a bit. We've been sending them outside alot and going on walks in the evenings. Jace keeps waking Emily up in the morning and we are trying to figure out how to break this habit.
Ariana is doing good. She's slowly but surely trying to take more steps, and when she falls she's trying to get back up instead of crawling! She has physical therapy in the morning and I'm so excited to hear what they say about her progress!
Brian is ok. He's got a cold at the moment so a bit grouchy about that. He and I aren't on the best of terms at the moment, and to be honest I have no idea why. We arne't specifically fighting but we aren't specifically communicating well and getting along either.
I'm pretty good. Just bored with sitting here at home. I starting knitting Ben a pair of wool shorties yesterday. I should hopefully have them finished up tonight! They are a beautiful kettle dyed wool in browns and greens. They are knitting up beautifully. I have to stop frequently to let my hands rest but I'm having fun knitting again!
Anyways that's about it for now. I think we are going to head out for a walk.
Benjamin started school on Monday, and today was his 2nd day. We had our 3rd IEP mtg today and hopefully we FINALLY have it all figured out. Ben will be going to school on Mondays and Wednesdays from 9am to 11:30. This is for his summer extended year. So we ended up with 5 hours a week. I couldn't believe it! He seems to be doing well with his 1 on 1 associate so I'm really relieved about that.
Emily and Jace are doing ok. They are getting bored and fighting quite a bit. We've been sending them outside alot and going on walks in the evenings. Jace keeps waking Emily up in the morning and we are trying to figure out how to break this habit.
Ariana is doing good. She's slowly but surely trying to take more steps, and when she falls she's trying to get back up instead of crawling! She has physical therapy in the morning and I'm so excited to hear what they say about her progress!
Brian is ok. He's got a cold at the moment so a bit grouchy about that. He and I aren't on the best of terms at the moment, and to be honest I have no idea why. We arne't specifically fighting but we aren't specifically communicating well and getting along either.
I'm pretty good. Just bored with sitting here at home. I starting knitting Ben a pair of wool shorties yesterday. I should hopefully have them finished up tonight! They are a beautiful kettle dyed wool in browns and greens. They are knitting up beautifully. I have to stop frequently to let my hands rest but I'm having fun knitting again!
Anyways that's about it for now. I think we are going to head out for a walk.
Saturday, June 14, 2008
Pictures from Today
we had a great time today at the open house. no rain came and it was in the low 80s pretty windy but that's ok. i had the chance to take alot of good pictures of the kids and such!
Click HERE for pictures
the rain will be here in just a few.
I got a phone call just now all the way from Alana in Germany. She was so excited because she saw us on the news. She said the pictures were all like some of the pictures I took. She couldn't believe that she saw Iowa on the news all the way across the world in Germany! :)
Click HERE for pictures
the rain will be here in just a few.
I got a phone call just now all the way from Alana in Germany. She was so excited because she saw us on the news. She said the pictures were all like some of the pictures I took. She couldn't believe that she saw Iowa on the news all the way across the world in Germany! :)
good news bad news
the river in cedar rapids crested yesterday afternoon, over 7 feet higher than the original prediction. bet they can tell as of yesterday morning there is over $736 million worth of damage. But until they can actually get in there that is a low estimate. the river has slowly begun to recede.
the river in iowa city is still rising and is expected to crest on monday. they are doing everything they can to protect the U of I hospital as it's the last fully functioning hospital around right now.
the even worse news is we are supposed to get more rain today, tonight, and tomorrow. Everyone is getting ready and preparing for the worst.
our local volunteer fire department is having a family day today from 11 to 4. They are having tours and games and a BBQ. We are going to take the kids to have some fun time out, and to get to know more in our community. It will be a much needed break for us all.
thank you to everyone for all of the prayers and emails. it means alot to us to know that everyone is thinking about us and our community.
the river in iowa city is still rising and is expected to crest on monday. they are doing everything they can to protect the U of I hospital as it's the last fully functioning hospital around right now.
the even worse news is we are supposed to get more rain today, tonight, and tomorrow. Everyone is getting ready and preparing for the worst.
our local volunteer fire department is having a family day today from 11 to 4. They are having tours and games and a BBQ. We are going to take the kids to have some fun time out, and to get to know more in our community. It will be a much needed break for us all.
thank you to everyone for all of the prayers and emails. it means alot to us to know that everyone is thinking about us and our community.
Friday, June 13, 2008
we're alive
sorry for the delay in the update. we are just so busy and so exhausted. this has been physically, mentally and emotionally exhausting. the water is down right here on our property. our living room is wet. very wet. come to find out there is a MAJOR leak all the way across the back wall of our home and the wall is completely rotted out and molded. so now we have a main structural wall completely soaked to the bone. also we lost about 30% of the shingles on the roof and most the rest are just hanging off. we lost the tree in the front and then 2 of our trees have broken branches hanging on the roof.
water conservation is in effect and our town will probably soon be sending the water we have to cedar rapids. gas is high, food is hard to find, mail is nonexistent, highways are closed, hospitals are evacuated, friends are evacuating and losing their homes. my school has stopped sandbagging and is evacuating. some good friends of ours had to evacuated last night as the water was almost to their home. they got their clothes and some papers. i will join her husband sunday to try to get over there and see if we can get in and if we can salvage anything.
it's devasting. i had no idea that this much of our lives would be affected. everyone is just coming together and trying to figure out what needs done. the kids and i went down to the local store and had breakfast and chatted with others in the community. then everyone headed home to try and dry things out. as many things as possible we've moved upstairs and that's taken alot of time and creativity to make it all fit. we've stacked things high etc...
we are running a dehumidifier full speed continuously and have had to empty the huge tank 3 times so far today. the smell in here is sickening from the back wall wet and rotting.
sorry for not answering all the emails and phone calls. it's just been one of those..don't want to talk to anyone days. i don't mean to sound rude but if you aren't here living it you just don't quite get it. heck i didn't even quite get it until it hit home and until we drove down and saw downtown. i was literally ill last night when we got home. words can't describe what is happening here and how we all feel. so i hope i don't sound rude and stand offish it's just hard and we are all trying to figure out how to feel and deal.
the kids have lots of questions and they don't understand what's happening, so that's made it interesting as well.
more updates soon...promise to atleast post once a day so everyone knows we are ok.
water conservation is in effect and our town will probably soon be sending the water we have to cedar rapids. gas is high, food is hard to find, mail is nonexistent, highways are closed, hospitals are evacuated, friends are evacuating and losing their homes. my school has stopped sandbagging and is evacuating. some good friends of ours had to evacuated last night as the water was almost to their home. they got their clothes and some papers. i will join her husband sunday to try to get over there and see if we can get in and if we can salvage anything.
it's devasting. i had no idea that this much of our lives would be affected. everyone is just coming together and trying to figure out what needs done. the kids and i went down to the local store and had breakfast and chatted with others in the community. then everyone headed home to try and dry things out. as many things as possible we've moved upstairs and that's taken alot of time and creativity to make it all fit. we've stacked things high etc...
we are running a dehumidifier full speed continuously and have had to empty the huge tank 3 times so far today. the smell in here is sickening from the back wall wet and rotting.
sorry for not answering all the emails and phone calls. it's just been one of those..don't want to talk to anyone days. i don't mean to sound rude but if you aren't here living it you just don't quite get it. heck i didn't even quite get it until it hit home and until we drove down and saw downtown. i was literally ill last night when we got home. words can't describe what is happening here and how we all feel. so i hope i don't sound rude and stand offish it's just hard and we are all trying to figure out how to feel and deal.
the kids have lots of questions and they don't understand what's happening, so that's made it interesting as well.
more updates soon...promise to atleast post once a day so everyone knows we are ok.
Thursday, June 12, 2008
update and pictures 939pm
flood stage is 12 ft.
9pm thursday 31 ft
(mind you they thought it was only going to go to 24.9 ft.)
we are still pumping away here. one of our pumps is being quite tempermental so we are having to use the smaller capacity one. the rain is slowing here for the moment so we are hoping to get some catch up pumping done.
We did go into cedar rapids tonight so those pictures are in the link as well. some are blurry as we couldn't get out of our vehicle on the highway.
i can say that i have never seen anything like this in my life and hope to never again.
words can't describe what we witnessed tonight. you will get an idea from the pictures but they don't capture it.
Click HERE for Pictures
9pm thursday 31 ft
(mind you they thought it was only going to go to 24.9 ft.)
we are still pumping away here. one of our pumps is being quite tempermental so we are having to use the smaller capacity one. the rain is slowing here for the moment so we are hoping to get some catch up pumping done.
We did go into cedar rapids tonight so those pictures are in the link as well. some are blurry as we couldn't get out of our vehicle on the highway.
i can say that i have never seen anything like this in my life and hope to never again.
words can't describe what we witnessed tonight. you will get an idea from the pictures but they don't capture it.
Click HERE for Pictures
update 555pm
we are here. it's been one storm after the next. our landlord had to come out and bring a second submersible pump. the new one pumps 2700 gallons an hour. it ran all afternoon. he also brought a dehumidifier to put where the water is getting in to help a touch until it can get repaired. our roof is falling off in huge chunks. right now we are again between storms. tonight they are calling for more huge storms and possibly tornados. it could be a long night. we are already exhausted so we are hoping to be able to sleep tonight. i don't want to be out there all night digging trenches and such.
i went into town and bought lots of drinks. the area is on water restriction. apparently everyone is at 25% percent water supply. so that's pretty crappy as you can imagine.
i think we will be heading to bed early tonight if at all possible. i didn't take any pictures today as we were to busy working to keep our house safe. there are tons of new pictures on the newspaper online www.gazetteonline.com though and on foxnews.com and such.
i went into town and bought lots of drinks. the area is on water restriction. apparently everyone is at 25% percent water supply. so that's pretty crappy as you can imagine.
i think we will be heading to bed early tonight if at all possible. i didn't take any pictures today as we were to busy working to keep our house safe. there are tons of new pictures on the newspaper online www.gazetteonline.com though and on foxnews.com and such.
update 115pm
all highways in and out closed. large railroad bridge downtown collapsed. our entire yard is now underwater and up on the bottom of the foundation across the back. i just came in from digging another trench across the back trying to keep it away from the foundation. submersible pump is completely submersed in the middle of the backyard's lake.
more later.
more later.
Update 1033am
we've been outside for over 3 hrs now digging trenches, shoveling, pumping, sweeping water etc.. the next storm is on it's way. our yard is still about 6 or more inches deep with water. we are having trouble moving the water out of the back of the house. the submersible pump is trying but can't keep up. the water is coming in the back of the house and the whole back wall is rotted out. our landlord put a new battery on the sump back up. it's pumping almost constantly. we still have power so far.
many towns around us have no power. downtown cedar rapids now has water up to the windows and they are evacuating people by boat now. downtown cedar rapids, iowa city and coralville are all on mandatory evacuation.
more later.
many towns around us have no power. downtown cedar rapids now has water up to the windows and they are evacuating people by boat now. downtown cedar rapids, iowa city and coralville are all on mandatory evacuation.
more later.
flood hits home
the water is here. our entire property is water. it is an 1/8th of an inch from the doors. landlord brought a pump. not working. we moving everything to high ground.
rain bad.
more later
rain bad.
more later
Wednesday, June 11, 2008
floods
we are contemplating building an ark. it's getting bad here.
www.gazetteonline.com
http://picasaweb.google.com/EJBAMommy/Flood0611
brian and i spent today taking pictures of the flood. iowa city is now under mandatory evacuation and downtown cedar rapids is pretty much closed down. we had to park and walk and on our way back thru it was completely closed.
big storms coming tonight and tomorrow so who knows what will happen now.
will update as we know more.
www.gazetteonline.com
http://picasaweb.google.com/EJBAMommy/Flood0611
brian and i spent today taking pictures of the flood. iowa city is now under mandatory evacuation and downtown cedar rapids is pretty much closed down. we had to park and walk and on our way back thru it was completely closed.
big storms coming tonight and tomorrow so who knows what will happen now.
will update as we know more.
Tuesday, June 10, 2008
Not what you think
**warning: probably very scattered thoughts, not perfect sentences, may not be perfectly flowing reading :) **
raising an autistic child isn't what most people think. it's not like the movies. i absolutely HATE seeing an autistic child portrayed on tv. They are usually showed to be horribly agressive and abusive and self mutilating, many times showed involved in murders and such, or they are showed to be stupid. the families are usually showed sticking them into institutions to try and protect the child, or to simply not have to deal with it. It's horrible how autism is portrayed in movies and tv shows.
when people find out that benjamin is autistic i see the look in their eyes. most tell me they saw it on tv, or in a movie. or that they know someone who knows someone who is related to someone who knows someone who is autistic.
then you have those people who think that the child is bad or naughty or that they way we are parenting is what is causing the problem. if we disciplined more, or if we didn't give in, if we didn't give him special treatment, if we just forced him to communicate, etc...
Others treat it as a disease. They don't want to come anywhere near him, or even us. Heaven forbid it could be contagious. I think that autism is a bigger taboo to some than the AIDS epidemic.
Then there are others who see Ben for 5 minutes and make their judgement from that. He said a few words, he smiled, he played with a car, he didn't scream and slam his head into a wall, so clearly he is fine. He isn't really autistic. They think that we clearly have it so easy because Ben acted fairly normal, maybe even a bit quiet, during the 5 minutes they saw him, so clearly that must be how he is during the other 23 hrs and 55 minutes of each day.
Life isn't like any of those things above. Ben isn't contagious. He doesn't have a disease. He isn't stupid. He isn't weird. We don't underdiscipline. We don't over indulge him. he throws horrible tantrums, sometimes for hours. He refuses to eat sometimes for weeks. When he does eat it's a fight and it's strange things. He will eat only applesauce out of the dumb little plastic containers for weeks, every single meal. Halfway thru the meal he could throw it across the room and scream until you figure out that he has changed and now the new obsession is waffles. He gets constipated so bad that we now keep a container of spray lube in his room to help when we have to literally remove a piece of stool twice the size of his fist from his bottom as he screams. he can say amazing sentences, putting words together properly and clearly pronouncing each word, then I can ask him if he wants milk or applejuice and he loses all communication and can't answer the question. He can see a motorcycle and he will say "it's a motorcycle" over and over until we say it exactly the way he wants. sounds simple huh? but it's not because we don't know how he wants us to say it, we aren't in his head. this can go on for hours until he is so exhausted he can't go on or until we figure out exactly what he wants. he can scream for no apparent reason, us never figuring out why. he is OCD, and this can be a long exhausting process. he usually only wants me. if he drops something it has to be me that picks it up and gives it to him. if anyone else tries to it's another melt down. he will follow me around screaming my name over and over. no matter what i do he won't stop. he doesn't ask for help, he doesn't tell you if he needs something, he doesn't tell you what he needs, he doesn't initiate any sort of conversation at all.
these things can be exhausting...and embarressing. I SOOO hate to say that. i feel like such a horrible person to even think that let alone say it but it's the truth. people stare in public and i hate it. sometimes i just want to crawl under the table. sometimes i don't want anyone to know that i'm a part of this at all. sometimes i wish he would just stop. sometimes i scream because i just can't deal with it anymore. sometimes i just want him to stop. sometimes i don't feel empathy for him having to go through this, sometimes i just want the insanity of autism to stop.
i have no idea where we are going to end up on this roller coaster. i would like to think that it ends with ben functioning perfectly in a neurotypical world. but i'm beyond terrified that it doesn't. how long can i do this? can i live my whole life like this? what happens as ben gets older and bigger? i know that i am a mother which we know means indestructible, invincible, etc...i know that no matter what happens i will make it and so will ben, i just hope i can keep my family and my marriage intact as we continue to fight the uphill battle of sanity.
raising an autistic child isn't what most people think. it's not like the movies. i absolutely HATE seeing an autistic child portrayed on tv. They are usually showed to be horribly agressive and abusive and self mutilating, many times showed involved in murders and such, or they are showed to be stupid. the families are usually showed sticking them into institutions to try and protect the child, or to simply not have to deal with it. It's horrible how autism is portrayed in movies and tv shows.
when people find out that benjamin is autistic i see the look in their eyes. most tell me they saw it on tv, or in a movie. or that they know someone who knows someone who is related to someone who knows someone who is autistic.
then you have those people who think that the child is bad or naughty or that they way we are parenting is what is causing the problem. if we disciplined more, or if we didn't give in, if we didn't give him special treatment, if we just forced him to communicate, etc...
Others treat it as a disease. They don't want to come anywhere near him, or even us. Heaven forbid it could be contagious. I think that autism is a bigger taboo to some than the AIDS epidemic.
Then there are others who see Ben for 5 minutes and make their judgement from that. He said a few words, he smiled, he played with a car, he didn't scream and slam his head into a wall, so clearly he is fine. He isn't really autistic. They think that we clearly have it so easy because Ben acted fairly normal, maybe even a bit quiet, during the 5 minutes they saw him, so clearly that must be how he is during the other 23 hrs and 55 minutes of each day.
Life isn't like any of those things above. Ben isn't contagious. He doesn't have a disease. He isn't stupid. He isn't weird. We don't underdiscipline. We don't over indulge him. he throws horrible tantrums, sometimes for hours. He refuses to eat sometimes for weeks. When he does eat it's a fight and it's strange things. He will eat only applesauce out of the dumb little plastic containers for weeks, every single meal. Halfway thru the meal he could throw it across the room and scream until you figure out that he has changed and now the new obsession is waffles. He gets constipated so bad that we now keep a container of spray lube in his room to help when we have to literally remove a piece of stool twice the size of his fist from his bottom as he screams. he can say amazing sentences, putting words together properly and clearly pronouncing each word, then I can ask him if he wants milk or applejuice and he loses all communication and can't answer the question. He can see a motorcycle and he will say "it's a motorcycle" over and over until we say it exactly the way he wants. sounds simple huh? but it's not because we don't know how he wants us to say it, we aren't in his head. this can go on for hours until he is so exhausted he can't go on or until we figure out exactly what he wants. he can scream for no apparent reason, us never figuring out why. he is OCD, and this can be a long exhausting process. he usually only wants me. if he drops something it has to be me that picks it up and gives it to him. if anyone else tries to it's another melt down. he will follow me around screaming my name over and over. no matter what i do he won't stop. he doesn't ask for help, he doesn't tell you if he needs something, he doesn't tell you what he needs, he doesn't initiate any sort of conversation at all.
these things can be exhausting...and embarressing. I SOOO hate to say that. i feel like such a horrible person to even think that let alone say it but it's the truth. people stare in public and i hate it. sometimes i just want to crawl under the table. sometimes i don't want anyone to know that i'm a part of this at all. sometimes i wish he would just stop. sometimes i scream because i just can't deal with it anymore. sometimes i just want him to stop. sometimes i don't feel empathy for him having to go through this, sometimes i just want the insanity of autism to stop.
i have no idea where we are going to end up on this roller coaster. i would like to think that it ends with ben functioning perfectly in a neurotypical world. but i'm beyond terrified that it doesn't. how long can i do this? can i live my whole life like this? what happens as ben gets older and bigger? i know that i am a mother which we know means indestructible, invincible, etc...i know that no matter what happens i will make it and so will ben, i just hope i can keep my family and my marriage intact as we continue to fight the uphill battle of sanity.
Monday, June 9, 2008
No Trip
Life can be interesting sometimes.
We aren't coming into Wichita this week. I'm not happy about this but sometimes that's how life ends up. We will make it in I just don't know the exact date yet.
Jace had his appointment with the GI doc. He had labwork and all and we are waiting on the results. Then the doc will decide what he wants to do next. So we wait. He's still completely off of dairy.
Ben is officially 3. WOW. His party went well. We had 2 families over, for a total of 6 adults and 8 kids. He loved all of his presents, and loved his cake. He wanted a blue circle cake. It wasn't the most beautiful cake ever but he loved it. So that is all that matters. He is also officially done with his Early Access therapy. He will start his new therapy next week. I'm excited and nervous to see how it goes.
Ariana had her therapy this morning. She met her new physical therapist, and did great with her. She is also going to be referred for OT. They said that she is definately struggling. She has problems with her core and hips. They also immediately noticed her hands and the problems there. They are going to start doing therapy and also are thinking that she may need to be seen by a neurologist. We shall see.
We went to walmart this morning and I parked the cart to look for something. Next thing i knew I heard a loud crash and Ari start screaming. When I touched the shelf down a bit it made the whole shelf slightly shift. Dumb walmart has these rolling file cabinets that you can fold up. They put them on an upper shelf propped up on the wheels with nothing blocking them in. All 8 of them fell and 3 of them hit Ariana in the head. She now has a bump and bruise on her head. I complained to the manager telling them that needs fixed and they filed this whole incident report and crap. I was just pissed and wanted to make sure that this doesn't happen to anyone else. I'm sure it didn't feel very good, but I think it probably scared her more than anything.
Today is Brian's 1st day to not have to pick up Emily and now he will be home super late anyway. He got to work late this morning so therefore gets off late. Hopefully he can get into the habit of getting up and into work early so that he can get home early and have some time to spend as a family.
well that is all for now as my kids are all waking up and the laundry is needing switched and i'm going to need to start dinner...etc...you get the idea.
more to come tomorrow.
We aren't coming into Wichita this week. I'm not happy about this but sometimes that's how life ends up. We will make it in I just don't know the exact date yet.
Jace had his appointment with the GI doc. He had labwork and all and we are waiting on the results. Then the doc will decide what he wants to do next. So we wait. He's still completely off of dairy.
Ben is officially 3. WOW. His party went well. We had 2 families over, for a total of 6 adults and 8 kids. He loved all of his presents, and loved his cake. He wanted a blue circle cake. It wasn't the most beautiful cake ever but he loved it. So that is all that matters. He is also officially done with his Early Access therapy. He will start his new therapy next week. I'm excited and nervous to see how it goes.
Ariana had her therapy this morning. She met her new physical therapist, and did great with her. She is also going to be referred for OT. They said that she is definately struggling. She has problems with her core and hips. They also immediately noticed her hands and the problems there. They are going to start doing therapy and also are thinking that she may need to be seen by a neurologist. We shall see.
We went to walmart this morning and I parked the cart to look for something. Next thing i knew I heard a loud crash and Ari start screaming. When I touched the shelf down a bit it made the whole shelf slightly shift. Dumb walmart has these rolling file cabinets that you can fold up. They put them on an upper shelf propped up on the wheels with nothing blocking them in. All 8 of them fell and 3 of them hit Ariana in the head. She now has a bump and bruise on her head. I complained to the manager telling them that needs fixed and they filed this whole incident report and crap. I was just pissed and wanted to make sure that this doesn't happen to anyone else. I'm sure it didn't feel very good, but I think it probably scared her more than anything.
Today is Brian's 1st day to not have to pick up Emily and now he will be home super late anyway. He got to work late this morning so therefore gets off late. Hopefully he can get into the habit of getting up and into work early so that he can get home early and have some time to spend as a family.
well that is all for now as my kids are all waking up and the laundry is needing switched and i'm going to need to start dinner...etc...you get the idea.
more to come tomorrow.
Friday, June 6, 2008
All done
school is finished. brian just picked emily up from her last day of school. today was also ben's last day of in home therapy with the under 3 team. we said goodbye to the last of his team this morning. weird.
i can't believe that the kids are getting so big. emily just finished the first grade, jace will be starting kindergarten this fall, benjamin will be 3 tomorrow. time flies.
we are having a BBQ here at our house tomorrow and some friends are coming over. we figured something small would be best as ben doesn't like big crowds and lots of people.
i finished sewing together the front facing of my quilt yesterday. I will go out later today and get the batting and the backing and then I will be ready to start quilting it. I can't wait till it's finished. It is looking so good!
I finished sewing Emily's curtains and valance this morning and got them hung up for her. it looks really good! A good friend of mine is hand sewing her a quilt in matching material to the valances and such. very girly! :)
i can't believe that the kids are getting so big. emily just finished the first grade, jace will be starting kindergarten this fall, benjamin will be 3 tomorrow. time flies.
we are having a BBQ here at our house tomorrow and some friends are coming over. we figured something small would be best as ben doesn't like big crowds and lots of people.
i finished sewing together the front facing of my quilt yesterday. I will go out later today and get the batting and the backing and then I will be ready to start quilting it. I can't wait till it's finished. It is looking so good!
I finished sewing Emily's curtains and valance this morning and got them hung up for her. it looks really good! A good friend of mine is hand sewing her a quilt in matching material to the valances and such. very girly! :)
Wednesday, June 4, 2008
New Pictures
It's been a few since I've posted pictures. I don't have alot of new ones but here are a few!
1st is Emily at her piano recital. (I made the dress)
Jace at his graduation.
Ben at his graduation.
Jace getting his diploma.
Jace and his best friend from school.
Ben and Ari being cute in the car.
1st is Emily at her piano recital. (I made the dress)
Jace at his graduation.
Ben at his graduation.
Jace getting his diploma.
Jace and his best friend from school.
Ben and Ari being cute in the car.
Tuesday, June 3, 2008
Summer for the boys
summer is officially here for the boys. today was jace's final graduation and he is now on summer as well. emily has 2 1/2 days left. i'm so excited that we are almost done. only 3 more mornings to have to make the long drive to get her to school.
ben has 2 more in home therapy sessions with the autism team. i can't believe that the time is almost up. since he turns 3 on saturday he transfers to the school district. i will really miss his team. they were so great with him. he will start his new program on the 18th of june. he did get extended year..2 days a week, 1 hour each time of school and then 30 minutes 1 day a week of speech. they got his associate hired and she will be starting summer school with him on the 18th. so he will have her from the very first day that he starts school. i'm so relieved about that. i'm glad that he will get to have the consistency of her always being with him. i can't believe that ben will be 3 on saturday. we got his presents in the mail today...ordered them all from discovery toys. brian's first comment is how it's so weird because they totally aren't a typical toy for a 3 year old. i agree but these are the kinds of things that he loves.
tomorrow is jace's appointment with the pediatric GI. I'm excited to meet the new doc and get working with him. i'm also excited because for the first time ever jace will have an actual pediatric doc in the city that we live in! that's a first and definately exciting. right now jace is on a month of no dairy again. he's drinking a bit of almond milk and thats it. so we are back to be very creative with our diet and cooking. he's doing pretty good although he's really missing all of his foods. he keeps begging for his appointment so he can have milk...if only he understood that it isn't that easy.
brian was watching a video of tornados with the kids, and the one happened to be from the andover tornado. brian said he lived there when it came through. Jace asked him if he died in the tornado. brian laughed and said no. jace said oh. gotta love the things they say!
well ben is now throwing a fit because he got in trouble for throwing a picture. now ariana is crying because ben is crying. ugggh. gotta love life.
more later.
ben has 2 more in home therapy sessions with the autism team. i can't believe that the time is almost up. since he turns 3 on saturday he transfers to the school district. i will really miss his team. they were so great with him. he will start his new program on the 18th of june. he did get extended year..2 days a week, 1 hour each time of school and then 30 minutes 1 day a week of speech. they got his associate hired and she will be starting summer school with him on the 18th. so he will have her from the very first day that he starts school. i'm so relieved about that. i'm glad that he will get to have the consistency of her always being with him. i can't believe that ben will be 3 on saturday. we got his presents in the mail today...ordered them all from discovery toys. brian's first comment is how it's so weird because they totally aren't a typical toy for a 3 year old. i agree but these are the kinds of things that he loves.
tomorrow is jace's appointment with the pediatric GI. I'm excited to meet the new doc and get working with him. i'm also excited because for the first time ever jace will have an actual pediatric doc in the city that we live in! that's a first and definately exciting. right now jace is on a month of no dairy again. he's drinking a bit of almond milk and thats it. so we are back to be very creative with our diet and cooking. he's doing pretty good although he's really missing all of his foods. he keeps begging for his appointment so he can have milk...if only he understood that it isn't that easy.
brian was watching a video of tornados with the kids, and the one happened to be from the andover tornado. brian said he lived there when it came through. Jace asked him if he died in the tornado. brian laughed and said no. jace said oh. gotta love the things they say!
well ben is now throwing a fit because he got in trouble for throwing a picture. now ariana is crying because ben is crying. ugggh. gotta love life.
more later.
Monday, June 2, 2008
Creative Eating
Benjamin is back on a major eating issue kick. He has eating applesauce mostly for almost 2 weeks now. He's had a few bites of a breakfast casserole, a pb & j(part of it) and maybe some salami. tonight he wanted yogurt. so i took a meatball and the yogurt and 1/3 of a banana and put it all in the blender. he wouldn't really eat it at first and you could tell he knew something wasn't right. Finally he let me spoon feed it to him and he did end up eating it. We always give him whatever we are eating and then we finally at almost the end of the meal give him the applesauce or whatnot that he wants. We simply need him to eat something. i so hope that someday he outgrows this and that he will be able to eat. it's so hard to keep trying to sneak some food in, and to constantly fight with him over eating.
in other news...jace and ben had their graduation today. jace's last graduation is tomorrow. ben is done with school for the semester! YEAH! I'm so ready for this school year to be over.
anyways so much more is going on but i just don't have time right now to type it all out. i'm baking...LOTS. i'm making up 6 goody boxes for the kids to take to all of their teachers tomorrow. muffins and cookies and all that yummy stuff! more soon....
in other news...jace and ben had their graduation today. jace's last graduation is tomorrow. ben is done with school for the semester! YEAH! I'm so ready for this school year to be over.
anyways so much more is going on but i just don't have time right now to type it all out. i'm baking...LOTS. i'm making up 6 goody boxes for the kids to take to all of their teachers tomorrow. muffins and cookies and all that yummy stuff! more soon....
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