Once again I was unable to get into my blog to post, until now. This post was written last December. Hopefully I can be more consistent with writing.
Before I could access my blog again, I had all kinds of thoughts of things I wanted to post. Now it seems my mind has gone blank. Why is that? Makes a body wonder.
Holidays are tough ones. I finally put up my tree tonight. I bought decorations to decorate it differently this year. I thought, over this year, that I was doing good. But I am realizing it will still take time. Lots of time. I love the ornaments I have collected over the years. There are handmade ones that the kids made at school & church, and also ones I bought for them each year. I decided I needed a change. Maybe it will make things easier, but probably not. And it's ok!
We still have our sweet little foster baby that we have had for nearly 8 months now. She is such a precious little one. Always happy, smiling, and responding to us. Today was court for her parents. It was another routine hearing, going over the plans for reunification, and reviewing if mom & dad are doing their part to make the reunification happen. As I was sitting there, I had a very strong impression that she is going back to them. I suppose I should explain that. Mom & Dad have had 8 months to do what the social workers have asked them to do in order to get her back. Instead of doing it, they have found every excuse imaginable as to why they haven't. It is incredibly frustrating and sad. Not to mention the fact that they hate that their baby is in a white peoples home. They are Native American, and extremely racist. It makes me so sad to see this, and to know that this is what this sweet, darling baby is going to be raised up in. BUT, I know it is not my business. My job is to just take care of the babies and love them until they are able to go home to their parents. This little one just has a way of touching everyone's lives who come in contact with her, even for a brief moment. I don't know if I have had as special a little spirit in my home before. There is just something about her. I have learned that I have to have faith that Heavenly Father is mindful of her and will do what He can to watch over her. I guess I just had hope that the reunification would not happen, or be successful, so she would have the opportunity to be adopted into a good home.
Then I am torn, because I realize that when she is gone I will be able to really concentrate more on my sweet grandchildren. Then I feel awful thinking that, because I know just how much John & I will miss her. Oh well. I must wait & cross that bridge when we get there.
As I read back over this, I am chuckling to myself, thinking it seems like I am rambling. Maybe I shouldn't try to write when it is late at night. lol
Monday, July 2, 2018
Wednesday, September 27, 2017
Reinventing Myself aka My New Normal
This post was originally drafted about a year ago. But before I was able to finish it, I became unable to access my blog any more. I am so grateful that I can now do this, and rather than delete this post, I thought I would publish it anyway. I need these reminders.
June 19th, 2016 changed my life forever. I have had many life-changing things happen over the course of 50 years; a brother passed away when I was 13, we lost my nephew when I was 17, both grandparents are gone, both my parents are gone, my marriage, the births of my children, a car accident that left me in a hospital bed in my home for 2 months, etc...But this one tops them all.
Our sweet special needs boy passed from this earthly life to continue his mission in the next life. He was my life! My whole world revolved around him. I mean that in every sense of the phrase. I have previously told the story of how he came to our home. Over the years I have experienced anger at the birth mother for making the choices she did that caused him to have these earthly challenges, but then I would realize, we wouldn't have him if that hadn't happened.
Because of the Fetal Drug Syndrome Disorder, the Fetal Alcohol Syndrome Disorder, Epilepsy, and the Autism, Jud required a lot of work. He tried his best in EVERYTHING he did! But he was also very impulsive, delayed, and quick! I would turn my head for a minute & he would either disappear or be into something, creating messes. But he was my life!
On June 18th, twenty minutes after John & I returned home from a 3-day trip, Jud went into a seizure. It was the worst one I had ever seen him have. The paramedics could not stop it so they loaded him into the ambulance and took him to the hospital. John & I followed behind. At the ER, it still took them forever to get it stopped. Total seizing time was over an hour! That is hard for a parent to watch. They got the seizure stopped, but could not get his oxygen sats up. Then his heart stopped! After about 2 minutes of CPR (PCR as Jud use to like to call it when we were playing), they got it going again, but the decision was made to fly him directly to Primary Children's Hospital in Salt Lake. Long story short, and LONG 3 hour drive later, we, his parents, had to make the decision to end his suffering. He had been oxygen-deprived for over 7 hours, his heart had stopped 5 times, and was getting weaker every time they restarted it. How do you make that call to shut off the machines and let your sweet child's heart stop on it's own?
The last two months have been HARD! I know it is just the beginning. I walk thru the house & every moment has a memory.
I do not have to walk around legos scattered all over the living room floor anymore, or worry I might vacuum up an 'important' piece.
I will never again hear, 'Mom, I'm going to Larry's' anymore, or watch him stand at the end of the driveway hollering, 'Larry!' waiting to go over to 'work.'
I have gone from running the dishwasher an average of twice a day to maybe, 3 times a week.
Laundry??? Well...let's just say I do that once a week, maybe, whether we need to or not. I think I was probably doing 6-8 loads a week before.
No more running to Camp Hippo twice a week, and to Disability Services twice a week. My gas bill for my car has reduced drastically!
Each time I go to town I do not hear, 'Can we get a snow cone?' or, 'Can I get a treat or a prize at the store?'
My grocery bill? Forget about it! From 3 dozen eggs a week to none. From 2-3 gallons of milk a week to 1. We've had 5+ bags of chips sitting up in our pantry for 2 months now. They would have been gone in 5 days!
The tv is not on all day long.
I do not get snuggles at night when it's bedtime. And no more stories to read.
My lawn does not get mowed 5 times a week. (the neighborhood is strangely quiet. I think the girls next door need to step it up!)
No more playing in the mud & hosing off. Or jumping on the trampoline with the sprinkler under it.
I watch his puppy growing and think of how much he would have loved him. They would have been inseperable!
No more cleaning and finding old food or wrappers stuffed behind furniture or in cracks. (I looked up on the wall and found some gum stuck to the picture up there. Then when I finally had the emotions in check enough to take it down, I found another big wad just behind the picture)
And speaking of gum...We've had 6 packets of gum sitting up in the cupboard for 2 months now. That would have been gone in a matter of days.
I don't have to hide the sharpie markers any more.
We don't go thru reams of paper like crazy.
My table now has sewing stuff all over it instead of art supplies.
It is very lonely driving to church by myself. I use to long for the day when sunday mornings were peaceful and sitting thru church was not a challenge. Now I long for the way it was.
No more will I hear:
'I love you Mommy!'
'Can we snuggle?'
'Can we go some-else?' (somewhere else)
'When will I be done with Camp Hippo?'
'When is my HI worker coming?'
'Can I go swimming?'
'I'm hungry!' (ten minutes after eating!)
'Where's my silkie?'
'When can I get a dog?'
'Thank you for my dog!'
'Can I go to Larry's?'
'When is scouts?'
'Can I watch a movie?'
'When are we going camping?'
'When are we going to Brittany's?'
and so many many more!
And do you know what? This is the first year in 22 years that I have not had to register for school!
My days are very quiet. Even with all that needs to be done around the house, it is hard to find motivation to do it somedays. I am learning.
I will be working more.
I am retraining my mind to not be on high alert all the time.
It will be weird not walking out to the bus every morning, and watching for it every afternoon. I would always think that we needed to get another tree planted out at the end of the driveway to block the wind while we waited for the bus, in anticipation of when the other one finally fell down. Now we don't have to. At least for that reason.
June 19th, 2016 changed my life forever. I have had many life-changing things happen over the course of 50 years; a brother passed away when I was 13, we lost my nephew when I was 17, both grandparents are gone, both my parents are gone, my marriage, the births of my children, a car accident that left me in a hospital bed in my home for 2 months, etc...But this one tops them all.
Our sweet special needs boy passed from this earthly life to continue his mission in the next life. He was my life! My whole world revolved around him. I mean that in every sense of the phrase. I have previously told the story of how he came to our home. Over the years I have experienced anger at the birth mother for making the choices she did that caused him to have these earthly challenges, but then I would realize, we wouldn't have him if that hadn't happened.
Because of the Fetal Drug Syndrome Disorder, the Fetal Alcohol Syndrome Disorder, Epilepsy, and the Autism, Jud required a lot of work. He tried his best in EVERYTHING he did! But he was also very impulsive, delayed, and quick! I would turn my head for a minute & he would either disappear or be into something, creating messes. But he was my life!
On June 18th, twenty minutes after John & I returned home from a 3-day trip, Jud went into a seizure. It was the worst one I had ever seen him have. The paramedics could not stop it so they loaded him into the ambulance and took him to the hospital. John & I followed behind. At the ER, it still took them forever to get it stopped. Total seizing time was over an hour! That is hard for a parent to watch. They got the seizure stopped, but could not get his oxygen sats up. Then his heart stopped! After about 2 minutes of CPR (PCR as Jud use to like to call it when we were playing), they got it going again, but the decision was made to fly him directly to Primary Children's Hospital in Salt Lake. Long story short, and LONG 3 hour drive later, we, his parents, had to make the decision to end his suffering. He had been oxygen-deprived for over 7 hours, his heart had stopped 5 times, and was getting weaker every time they restarted it. How do you make that call to shut off the machines and let your sweet child's heart stop on it's own?
The last two months have been HARD! I know it is just the beginning. I walk thru the house & every moment has a memory.
I do not have to walk around legos scattered all over the living room floor anymore, or worry I might vacuum up an 'important' piece.
I will never again hear, 'Mom, I'm going to Larry's' anymore, or watch him stand at the end of the driveway hollering, 'Larry!' waiting to go over to 'work.'
I have gone from running the dishwasher an average of twice a day to maybe, 3 times a week.
Laundry??? Well...let's just say I do that once a week, maybe, whether we need to or not. I think I was probably doing 6-8 loads a week before.
No more running to Camp Hippo twice a week, and to Disability Services twice a week. My gas bill for my car has reduced drastically!
Each time I go to town I do not hear, 'Can we get a snow cone?' or, 'Can I get a treat or a prize at the store?'
My grocery bill? Forget about it! From 3 dozen eggs a week to none. From 2-3 gallons of milk a week to 1. We've had 5+ bags of chips sitting up in our pantry for 2 months now. They would have been gone in 5 days!
The tv is not on all day long.
I do not get snuggles at night when it's bedtime. And no more stories to read.
My lawn does not get mowed 5 times a week. (the neighborhood is strangely quiet. I think the girls next door need to step it up!)
No more playing in the mud & hosing off. Or jumping on the trampoline with the sprinkler under it.
I watch his puppy growing and think of how much he would have loved him. They would have been inseperable!
No more cleaning and finding old food or wrappers stuffed behind furniture or in cracks. (I looked up on the wall and found some gum stuck to the picture up there. Then when I finally had the emotions in check enough to take it down, I found another big wad just behind the picture)
And speaking of gum...We've had 6 packets of gum sitting up in the cupboard for 2 months now. That would have been gone in a matter of days.
I don't have to hide the sharpie markers any more.
We don't go thru reams of paper like crazy.
My table now has sewing stuff all over it instead of art supplies.
It is very lonely driving to church by myself. I use to long for the day when sunday mornings were peaceful and sitting thru church was not a challenge. Now I long for the way it was.
No more will I hear:
'I love you Mommy!'
'Can we snuggle?'
'Can we go some-else?' (somewhere else)
'When will I be done with Camp Hippo?'
'When is my HI worker coming?'
'Can I go swimming?'
'I'm hungry!' (ten minutes after eating!)
'Where's my silkie?'
'When can I get a dog?'
'Thank you for my dog!'
'Can I go to Larry's?'
'When is scouts?'
'Can I watch a movie?'
'When are we going camping?'
'When are we going to Brittany's?'
and so many many more!
And do you know what? This is the first year in 22 years that I have not had to register for school!
My days are very quiet. Even with all that needs to be done around the house, it is hard to find motivation to do it somedays. I am learning.
I will be working more.
I am retraining my mind to not be on high alert all the time.
It will be weird not walking out to the bus every morning, and watching for it every afternoon. I would always think that we needed to get another tree planted out at the end of the driveway to block the wind while we waited for the bus, in anticipation of when the other one finally fell down. Now we don't have to. At least for that reason.
Thank you to a wonderful friend, who managed to access my blog for me that I haven't been able to do for over a year. I am so grateful!
I stated this in my profile, but I am going to restate it here. Right now I am using my blog to record thoughts & feelings I have from events that have shaped my life over the past year and nearly a half. For me, I do not believe in posting things like this on Facebook because I do not want it to appear I am looking for attention. What has happened has happened and I am just trying to deal with it day by day, but do not want to appear that I have not 'gotten over it', or am looking for sympathy or attention. That, I am not! I just need an outlet.
So.....with that being said, you do not have to read the posts, or follow me at all! You can if you'd like. This is just for me, right now.
I stated this in my profile, but I am going to restate it here. Right now I am using my blog to record thoughts & feelings I have from events that have shaped my life over the past year and nearly a half. For me, I do not believe in posting things like this on Facebook because I do not want it to appear I am looking for attention. What has happened has happened and I am just trying to deal with it day by day, but do not want to appear that I have not 'gotten over it', or am looking for sympathy or attention. That, I am not! I just need an outlet.
So.....with that being said, you do not have to read the posts, or follow me at all! You can if you'd like. This is just for me, right now.
Tuesday, July 21, 2015
Crazy Life
Things have been so crazy-busy lately. Since June 18th, we have been to Utah for 4 days, home for 5, then I left for California for 4 1/2 days, home for 2, back to Utah for 4 days, home for 1 1/2, then to Boise for 2 days. We managed to be home for a week before spending a day at Girls' Camp, cooking for the Stake leaders. The next day I headed for Stanley to participate in the Mountain Momma's Craft Fair. That lasted 2 days. I am now home and so happy to be here, with no major things happening, relatively, for a little while. John does have Helaman's Camp for his priest-age boys next week, and in 2 weeks we will go back to Utah to spend a day with ALL the kids together. Taya & Kaleb will be up, so we are going to all be together. That will be awesome!
Anyway--In all this running and going, I have worried about how J would handle it all. Did I mention we also survived another seizure, and a panic/anxiety attack during all of this? In spite of it all, he really hasn't done too bad. It could have been much much worse. We have a month until school starts. I sure hope we can keep on a schedule and be ready for that. I have confidence that we will.
My challenge right now is getting him to keep the tv off during the day. I get distracted, cleaning and working, and don't pay attention to what he is doing, most days. Yesterday, it was afternoon before I realized he'd had it on all day. Today he is quite a bit more mouthy and sassy, thinking he is funny.
I took him with me when I went to Stanley last friday night. John came up the next morning and stayed a few hours, then took J home. I quickly figured out that wasn't a smart idea, to bring him with me. We were trying to set up Saturday morning and he was all over the place. For a little while, he made a friend who loves legos, so they sat under a tree for a long time, playing. After that, he was all over the fair, talking to people, making animal noises, etc. My stress level went thru the roof, trying to set up and keep track of him. Being my first fair as a vendor, that stress alone was phenomenal. Add trying to keep track of the boy on top of it, wow! It was a tough weekend for me. We made it thru, and lived to tell about it. But I definitely learned I don't take him with me without plenty of backup. Kim & Tyler were with me but they were trying to help me get the booth set up and ready to go. We have to have one person totally designated to watching the boy and nothing else. There was so much to see and so many sounds and smells. For a child who has the smell and hearing comparable to an animal, that is almost too overloading. And he wants everything he sees. I told him he could pick out one thing to buy, but he had to walk the whole place first, with a grownup, to see all there was, before he decided. Once he found something, and decided, there was no peace until he could go buy it. He perseverates on things so badly lately. Once he gets something on his mind, there is no peace until that happens or comes about. It doesn't do any good to tell him not to bring it up again, because he cannot get it out of his mind. Usually with Autistics, you need to prepare them in plenty of time, of an upcoming event or activity that may be a change in routine, or they will freak out. Not so with J. We cannot tell him we are going to do something or go somewhere until just before it happens, or we get no peace, and he works himself into a huge frenzy. Certainly makes life interesting.
Tonight is our ward Pioneer Day party. J absolutely loves going to these, but gets so overstimulated at them. He wants to be everywhere, talking to everyone, playing with everyone, in everyone's face, loud, mouthy and sassy. The ward members think it is all cute and funny, or don't say anything to stop him. It creates so much stress for John and I. We use to be able to skip the parties, and not say anything to him. Now he is more aware and paying attention at church, so he hears the announcements, gets the invitation, and wants to go. I just don't know. I am becoming more and more of an introvert, and just want to stay home. I suppose that isn't a very good thing either. We will just have to see how the afternoon goes. I am sure I will post an update on here.
Anyway--In all this running and going, I have worried about how J would handle it all. Did I mention we also survived another seizure, and a panic/anxiety attack during all of this? In spite of it all, he really hasn't done too bad. It could have been much much worse. We have a month until school starts. I sure hope we can keep on a schedule and be ready for that. I have confidence that we will.
My challenge right now is getting him to keep the tv off during the day. I get distracted, cleaning and working, and don't pay attention to what he is doing, most days. Yesterday, it was afternoon before I realized he'd had it on all day. Today he is quite a bit more mouthy and sassy, thinking he is funny.
I took him with me when I went to Stanley last friday night. John came up the next morning and stayed a few hours, then took J home. I quickly figured out that wasn't a smart idea, to bring him with me. We were trying to set up Saturday morning and he was all over the place. For a little while, he made a friend who loves legos, so they sat under a tree for a long time, playing. After that, he was all over the fair, talking to people, making animal noises, etc. My stress level went thru the roof, trying to set up and keep track of him. Being my first fair as a vendor, that stress alone was phenomenal. Add trying to keep track of the boy on top of it, wow! It was a tough weekend for me. We made it thru, and lived to tell about it. But I definitely learned I don't take him with me without plenty of backup. Kim & Tyler were with me but they were trying to help me get the booth set up and ready to go. We have to have one person totally designated to watching the boy and nothing else. There was so much to see and so many sounds and smells. For a child who has the smell and hearing comparable to an animal, that is almost too overloading. And he wants everything he sees. I told him he could pick out one thing to buy, but he had to walk the whole place first, with a grownup, to see all there was, before he decided. Once he found something, and decided, there was no peace until he could go buy it. He perseverates on things so badly lately. Once he gets something on his mind, there is no peace until that happens or comes about. It doesn't do any good to tell him not to bring it up again, because he cannot get it out of his mind. Usually with Autistics, you need to prepare them in plenty of time, of an upcoming event or activity that may be a change in routine, or they will freak out. Not so with J. We cannot tell him we are going to do something or go somewhere until just before it happens, or we get no peace, and he works himself into a huge frenzy. Certainly makes life interesting.
Tonight is our ward Pioneer Day party. J absolutely loves going to these, but gets so overstimulated at them. He wants to be everywhere, talking to everyone, playing with everyone, in everyone's face, loud, mouthy and sassy. The ward members think it is all cute and funny, or don't say anything to stop him. It creates so much stress for John and I. We use to be able to skip the parties, and not say anything to him. Now he is more aware and paying attention at church, so he hears the announcements, gets the invitation, and wants to go. I just don't know. I am becoming more and more of an introvert, and just want to stay home. I suppose that isn't a very good thing either. We will just have to see how the afternoon goes. I am sure I will post an update on here.
Big Weeked
We went to Salt Lake this weekend. We left thursday afternoon and came back saturday. J had a dr appointment friday morning. We took the new car so there was change #1. It is an Impala, so smaller than the van, obviously. J cannot quite spread things out & have the room he is accustomed to. But he loves the new car.
He knew we were going to stay in the motel, so he was really ready to be able to swim. Our original plan was to leave early enough that we could take little S & J swimming in the hotel pool that afternoon. Unfortunately, that didn't happen. Change #2. We have to be careful what we promise because if we say we MIGHT be able to do something, it is as good as saying we will do it. Even if we say we will think about it, he takes it as we are going to do it. We really have to be on our toes and pay attention to what we are saying, or replying to.
Change #3 is staying up later than normal, and sleeping in the same room with Mom & Dad & a t.v. It always takes a while for him to fall asleep, so that means late nights. Much later than normal.
One thing he absolutely loves, when we stay in the hotel, is the waffles at breakfast. He really loves getting to eat there. He's usually pretty good, and was that morning. Just a little too friendly for my comfort, with the other guests, but we are working on that one.
The dr visit went good. We get to do a sleep study. I have to make all those phone calls today and figure out when, in the middle of our crazy schedule over the next month, we can get that done. That requires another trip to Salt Lake. I don't mind that. It means I get to see the kids again. :) After the appointment, we went to the City Creek Mall to go to the Disney Store. Had to get a couple of things for the grandson, for his birthday, that he requested. J loves going into that store. He had 3 quarters with him that he dearly wanted to spend. He still doesn't understand the money concept so, rather than try to get him to understand there was absolutely nothing there that he could buy for 75 cents, John & I told him which area he could look in to pick something out. Everything he wanted was at least $20. He picked out a car, then found a stuffed Olaf that was on sale within the price range we gave him. Olaf has been his constant companion since then.
We had one more shopping place we needed to go so headed that way. On the way we stopped for lunch, then got the shopping done and headed back to the hotel. The whole morning, all we heard was, 'When can I go swimming? Am I going to get to swim today? Can I go swimming?' This child has no concept of time, at. all. I could tell him he has 5 minutes to do finish something and 2 minutes later tell him time is up & he believes me. I cannot tell him we will do something in 30 minutes. He doesn't get it.
We finally made it back to the hotel & I took him down to the pool to swim. There was another family there with the dad & 3 kids. The girlfriend (I gathered that from trying not to listen to some of their conversations) came a little bit later. I schooled J on the 'rules,' that he was to leave them alone, not bother them or butt into conversations, and just do his own thing. For the most part, he did pretty good. It was a very hot day! They had the pool doors open and an occasional breeze would blow thru, but I only lasted about an hour and 15 minutes before I had to call John and have him come take a turn.
The rest of the day wasn't too bad. We went out to Brittany's so she could cut & color my hair. By that time J thought he was starving to death. Brittany told him there were crackers and granola bars in the food storage room & he could help himself to something. Unbeknownst to us until yesterday, he took that very literally, and ate 2 boxes of fruit crisp bars. Ugh! We just have to keep a constant vigil over him.
Saturday was the two little grandsons birthday party. They had a bounce house set up. That got J all sorts of excited. Once everyone started coming, it wasn't long before he had to remove himself from the crowd. He went downstairs and put in a movie & stayed there. I love that he, for the most part, recognizes when he has had too much, and needs to find some place quiet. He doesn't always do that, but it is good when he does.
After the birthday party, Brittany had a 'surprise' birthday party for me, since it was my birthday that day. Apparently it was John's idea to do something and he told her to put it together. That was fun! I've got such a great family!
It was late before we headed home, and didn't get home until after 11 that night, but J managed to sleep some on the way. He didn't like that the seats don't recline in the car like the van's did, but I am sure we will adjust to that eventually also. Life is full of adjustments. It is just hard for those who view things so vastly different than the rest of us, and whose understanding isn't where ours is. I am sure we will live to tell about it all. :)
He knew we were going to stay in the motel, so he was really ready to be able to swim. Our original plan was to leave early enough that we could take little S & J swimming in the hotel pool that afternoon. Unfortunately, that didn't happen. Change #2. We have to be careful what we promise because if we say we MIGHT be able to do something, it is as good as saying we will do it. Even if we say we will think about it, he takes it as we are going to do it. We really have to be on our toes and pay attention to what we are saying, or replying to.
Change #3 is staying up later than normal, and sleeping in the same room with Mom & Dad & a t.v. It always takes a while for him to fall asleep, so that means late nights. Much later than normal.
One thing he absolutely loves, when we stay in the hotel, is the waffles at breakfast. He really loves getting to eat there. He's usually pretty good, and was that morning. Just a little too friendly for my comfort, with the other guests, but we are working on that one.
The dr visit went good. We get to do a sleep study. I have to make all those phone calls today and figure out when, in the middle of our crazy schedule over the next month, we can get that done. That requires another trip to Salt Lake. I don't mind that. It means I get to see the kids again. :) After the appointment, we went to the City Creek Mall to go to the Disney Store. Had to get a couple of things for the grandson, for his birthday, that he requested. J loves going into that store. He had 3 quarters with him that he dearly wanted to spend. He still doesn't understand the money concept so, rather than try to get him to understand there was absolutely nothing there that he could buy for 75 cents, John & I told him which area he could look in to pick something out. Everything he wanted was at least $20. He picked out a car, then found a stuffed Olaf that was on sale within the price range we gave him. Olaf has been his constant companion since then.
We had one more shopping place we needed to go so headed that way. On the way we stopped for lunch, then got the shopping done and headed back to the hotel. The whole morning, all we heard was, 'When can I go swimming? Am I going to get to swim today? Can I go swimming?' This child has no concept of time, at. all. I could tell him he has 5 minutes to do finish something and 2 minutes later tell him time is up & he believes me. I cannot tell him we will do something in 30 minutes. He doesn't get it.
We finally made it back to the hotel & I took him down to the pool to swim. There was another family there with the dad & 3 kids. The girlfriend (I gathered that from trying not to listen to some of their conversations) came a little bit later. I schooled J on the 'rules,' that he was to leave them alone, not bother them or butt into conversations, and just do his own thing. For the most part, he did pretty good. It was a very hot day! They had the pool doors open and an occasional breeze would blow thru, but I only lasted about an hour and 15 minutes before I had to call John and have him come take a turn.
The rest of the day wasn't too bad. We went out to Brittany's so she could cut & color my hair. By that time J thought he was starving to death. Brittany told him there were crackers and granola bars in the food storage room & he could help himself to something. Unbeknownst to us until yesterday, he took that very literally, and ate 2 boxes of fruit crisp bars. Ugh! We just have to keep a constant vigil over him.
Saturday was the two little grandsons birthday party. They had a bounce house set up. That got J all sorts of excited. Once everyone started coming, it wasn't long before he had to remove himself from the crowd. He went downstairs and put in a movie & stayed there. I love that he, for the most part, recognizes when he has had too much, and needs to find some place quiet. He doesn't always do that, but it is good when he does.
After the birthday party, Brittany had a 'surprise' birthday party for me, since it was my birthday that day. Apparently it was John's idea to do something and he told her to put it together. That was fun! I've got such a great family!
It was late before we headed home, and didn't get home until after 11 that night, but J managed to sleep some on the way. He didn't like that the seats don't recline in the car like the van's did, but I am sure we will adjust to that eventually also. Life is full of adjustments. It is just hard for those who view things so vastly different than the rest of us, and whose understanding isn't where ours is. I am sure we will live to tell about it all. :)
Thursday, June 18, 2015
ANOTHER ER visit
I don't know if I've mentioned J has not only been diagnosed with Autism, FAS and FDS, but also epilepsy/seizure disorder, migraines, and cluster headaches. We also discovered, thru an overnight oxymeter test that his 02 sats drop below 88 when he is sleeping at night, so it is recommended that he sleep with oxygen on at night. We are still working on getting him use to wearing the mask all night long. (sensory issues). Frequently, he will be sound asleep, or almost asleep, and get woke up with a headache. That happened last night.
I don't think he had quite fallen totally asleep when he hollered to me. His head was hurting. We got the oxygen on him and I waited by his bed. Sometimes the oxygen calms him and relieves the headache quite quickly. That's how we distinguish between cluster headaches & migraines. Oxygen stops the cluster headaches. I think there was more going on last night. He kept saying he felt funny and dizzy. That is when I go on high alert, watching for seizure activity. He stayed responsive to me the whole time, so that is good. But then he started twitching. Now, he can be pretty good at faking things sometimes (we are working on that), so I have to really pay attention to tell if he is faking it or it is uncontrollable. After a few minutes I determined he was not faking. I called John down to watch, and possibly give him a blessing. John watched for about 60 seconds and said I had better take him into the hospital. We try very hard not to be paranoid parents, but once you have witnessed just one of his seizures, you would understand. I don't know if I've mentioned before that his seizures are not like normal ones you usually see people having. And, they don't just last for a few minutes. They will last anywhere from 45 minutes to an hour and a half. Of course, we cannot allow that to happen. We have to have them stopped within 10-15 minutes max. So--that is why we are hyper-vigilant.
We got J out to the car. I tried taking his portable oxygen tank with us but couldn't get the regulator on right. So frustrating! We headed in anyway. Thankfully, we got lucky and got good staff in the ER this time. Last time we were in I kind of felt like the dr thought I was being an over paranoid mother & there was nothing really wrong with my son. This time they were so sweet and understanding and so good to J. I am learning that one of the first things I tell them is that he is Autistic and has a hard time verbalizing exactly what is wrong. They still were clueless as to what was happening with him. They run a quick EKG test & his heart tested out great. They did some blood work, gave him a blanket and an ice pack (he first said he was freezing, then 30 seconds later his head was so hot). The dr ordered a small dose of valium to give him to calm him down. I cannot tell you how much he HATES shots! He just knew the nurse hit a bone when she gave him the shot in his behind. (not likely). It took a few minutes for the valium to really kick in, but I saw him start to relax. About 10 minutes later he went from crying to hysterically giggling in about 30 seconds. Cracked me up! Anyway, after about 2 hours in there, they sent us home with a pain pill in my pocket, in case it happens again. As I lay in bed, after getting him settled and was thinking about it, I wonder if he is having panic attacks when his head starts hurting. They told me if he doesn't keep breathing normal (which he doesn't), the hyperventilating can cause chest-like pains. That made sense to me. I think with each visit, I am able to gather little snippets of information to help in the understanding department a little bit more. What a process! Thankfully, we are scheduled to see his Neurologist at Primary Children's tomorrow morning. Hopefully, we can piece together all this information and see if he can shed a little more light on what is going on with this sweet boy. One or two normal days would be so lovely to have, but I know it is wishful thinking.
That was just the evening activities we got to enjoy. All day yesterday, J had been looking forward to his HI worker coming so he could go swimming at the lake. He had his weekly appointment with the dermatologist to treat the warts on his thumb. They are very stubborn and are taking quite a while to go away. Once they are treated, they need to stay wrapped for 24 hours. While we were in the office, I realized he would not be able to go swimming. We had an all out crying fit in the exam room. The dr is also a counselor in our bishopric in our ward. He got a front row seat to view the festivities. Again, so frustrating! The fit pretty much lasted thru the dr visit, all the way home, and for the next 45 minutes until the HI worker got here. We were trying to convince him of other things to do when my visiting teachers showed up in the middle of it all. At that point I just wanted to curl up in a ball on my bed and cry. I knew that wasn't an option tho, so I sucked it up, and continued on. We were finally able to get him out the door, with extensive bribery, and I had a short visit with my VT's. After they left, I finished up some projects I was working on, while enjoying the quiet time and listening to some piano guys on youtube.
That was my day. How was yours? :D
BTW-This was our third ER visit in a month. I don't like those statistics.
BTW-This was our third ER visit in a month. I don't like those statistics.
Tuesday, June 16, 2015
Overstimulation
Today J got to go with John & the Young Men and Young Women of our ward to the Logan Temple to do baptisms for the dead. Our Idaho Falls Temple is closed until October of 2016 for renovations. We feel this will be a great opportunity for the youth to visit other temples and to realize how blessed we really are to have a temple only 30 minutes away. Now, having our temple closed, the nearest one is Rexburg, an hour's drive away. Because of it's being next to BYU-Idaho, it is so busy they will not take appointments. It is just a come-and-take-a-chance-you-won't-wait-for-hours thing. So, the leaders think it is a great opportunity to visit other temples. Twin Falls is a 2-hour drive, Logan is nearly 2 hours, Brigham City is about 2 hours, Ogden a little farther, and Bountiful just a bit beyond that.
Anyway, it was J's first chance to participate in this activity since he turned 12. The youth must be 12 years old, and have an interview with the Bishop to be found worthy enough to receive their limited-use recommend to attend the temple. I tried to explain to him what would happen today, but he just had a hard time understanding. Combine the stress of not understanding with the anticipation of getting to go somewhere and we had a recipe of a quite stressful morning. When J gets overstimulated, he gets quite mouthy. Honestly, I would describe it as a teenager-type attitude. Only, with a normal teenager, a parent could let them know loud and clear that that kind of talk was totally unacceptable and do NOT talk to me like that any more. For the most part that will work. But not with J! I deal with this on nearly a daily basis. Sometimes it escalates to the point that he has to go to his room to calm down and improve his attitude. He is always sorry and apologetic, but does not get that when you say you're sorry, it means you won't do it again. It happens. Over and over and over again. Maybe one day we will get it.
So….we first had to go to town to gas up the van, wash it in the car wash, then go to Wal Mart to buy lunch stuff and snacks. We gassed up and I let J wash the front window. He loves washing the windows at the gas station. We pulled around to the car wash and discovered just minutes before they had closed it for cleaning. J loves going thru the car wash, so he was very disappointed we couldn't do it. We don't deal with disappointment well when our stimulation is already off the charts. Off to Wal Mart. That is a very overstimulating outing all in itself. It is hard for him to take in all the things on the shelves, and all the smells. He wanted to buy this, and that, and make sure he had enough for everyone in the car. I feel all I do is say "No, we can't get that." Or, 'Only pick one.' Having to pick one drink out of 20 can be almost too much. Needless to say, by the time we got home, we were both on edge and quite snippy. I finally threatened him with, 'You can stay home and not go at all.' (that sort of worked). He was able to have some time for down time while I got things ready to go and fixed the lunches. That helped a little, but I'm not gonna lie--I breathed quite a sigh of relief when they pulled out of the driveway. I sat down in the chair to peruse the computer for a bit and promptly fell asleep.
You would think that just a little excursion to town like we had this morning would not be a big deal. But it is. He loves going in to Wal Mart, but has to look at EVERYTHING! He has hyper senses so he can hear and smell things that we normally cannot, or do not pay attention to. Add the vision to that, and all that is on the shelves and racks is a lot for him. And it exhausts me trying to keep track of him and pay attention to what I need to get. A lot of times I try to time my trips to town to coincide when he is at therapy or out with his HI or HS worker. I know I need to take him more, but…..
They made it home about 6:30 this evening. He said he had a good time. John said he had a little trouble keeping his hands to himself in the car, with the other boys, and when he was done with his turn being baptized and confirmed, he couldn't just sit there and watch the other kids. He had to go walk around outside. He cannot sit still without having something to do with his hands. That is why, at church one will always see him with a lego toy or his paper, clip board and drawing things. He has to be doing something. John took him out and let him walk around the grounds. When everyone was all done in the temple, they loaded up the cars and headed up to Utah State University campus for some Aggie Ice Cream. It's really good stuff! The leaders treated the kids to a 2-scoop cone or cup. That was a big hit. Then home they came.
I will say--this is one of the faster nights he has fallen asleep when it was time for bed. He didn't even stir when I got up from laying by him. He didn't think he needed his oxygen tonight, so I am hoping he sleeps all night without it. We shall see how it goes. John discovered it is not an easy thing to drive a significant distance while keeping track of a car-load of kids, one of them being J. That can be quite exhausting. :)
I think it was a rather good day, all things considered. We are all learning!
Anyway, it was J's first chance to participate in this activity since he turned 12. The youth must be 12 years old, and have an interview with the Bishop to be found worthy enough to receive their limited-use recommend to attend the temple. I tried to explain to him what would happen today, but he just had a hard time understanding. Combine the stress of not understanding with the anticipation of getting to go somewhere and we had a recipe of a quite stressful morning. When J gets overstimulated, he gets quite mouthy. Honestly, I would describe it as a teenager-type attitude. Only, with a normal teenager, a parent could let them know loud and clear that that kind of talk was totally unacceptable and do NOT talk to me like that any more. For the most part that will work. But not with J! I deal with this on nearly a daily basis. Sometimes it escalates to the point that he has to go to his room to calm down and improve his attitude. He is always sorry and apologetic, but does not get that when you say you're sorry, it means you won't do it again. It happens. Over and over and over again. Maybe one day we will get it.
So….we first had to go to town to gas up the van, wash it in the car wash, then go to Wal Mart to buy lunch stuff and snacks. We gassed up and I let J wash the front window. He loves washing the windows at the gas station. We pulled around to the car wash and discovered just minutes before they had closed it for cleaning. J loves going thru the car wash, so he was very disappointed we couldn't do it. We don't deal with disappointment well when our stimulation is already off the charts. Off to Wal Mart. That is a very overstimulating outing all in itself. It is hard for him to take in all the things on the shelves, and all the smells. He wanted to buy this, and that, and make sure he had enough for everyone in the car. I feel all I do is say "No, we can't get that." Or, 'Only pick one.' Having to pick one drink out of 20 can be almost too much. Needless to say, by the time we got home, we were both on edge and quite snippy. I finally threatened him with, 'You can stay home and not go at all.' (that sort of worked). He was able to have some time for down time while I got things ready to go and fixed the lunches. That helped a little, but I'm not gonna lie--I breathed quite a sigh of relief when they pulled out of the driveway. I sat down in the chair to peruse the computer for a bit and promptly fell asleep.
You would think that just a little excursion to town like we had this morning would not be a big deal. But it is. He loves going in to Wal Mart, but has to look at EVERYTHING! He has hyper senses so he can hear and smell things that we normally cannot, or do not pay attention to. Add the vision to that, and all that is on the shelves and racks is a lot for him. And it exhausts me trying to keep track of him and pay attention to what I need to get. A lot of times I try to time my trips to town to coincide when he is at therapy or out with his HI or HS worker. I know I need to take him more, but…..
They made it home about 6:30 this evening. He said he had a good time. John said he had a little trouble keeping his hands to himself in the car, with the other boys, and when he was done with his turn being baptized and confirmed, he couldn't just sit there and watch the other kids. He had to go walk around outside. He cannot sit still without having something to do with his hands. That is why, at church one will always see him with a lego toy or his paper, clip board and drawing things. He has to be doing something. John took him out and let him walk around the grounds. When everyone was all done in the temple, they loaded up the cars and headed up to Utah State University campus for some Aggie Ice Cream. It's really good stuff! The leaders treated the kids to a 2-scoop cone or cup. That was a big hit. Then home they came.
I will say--this is one of the faster nights he has fallen asleep when it was time for bed. He didn't even stir when I got up from laying by him. He didn't think he needed his oxygen tonight, so I am hoping he sleeps all night without it. We shall see how it goes. John discovered it is not an easy thing to drive a significant distance while keeping track of a car-load of kids, one of them being J. That can be quite exhausting. :)
I think it was a rather good day, all things considered. We are all learning!
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