It took an hour to get from the satellite ER to the main hospital. In the ambulance the RN was trying to make small talk with me but I was so sick to my stomach I couldn't carry on a conversation. We arrived at the ER doors and they made their way to the elevator and up to the 5th floor where the PICU (pediatric intensive care unit) was. When we got to the room a whole team of people were waiting for us. I wish I could give details about what happened next but mostly what I can describe is him being moved to a bed and hooked up to a ton of equipment. They tried and tried to get blood from his fingers and then his toes but they were all so cold they couldn't. They couldn't even draw blood from the IV they had put in at the ER.
About an hour after we got there the DO told me that he wanted to place an A-line, which is an IV that goes into his artery. This way they would be able to not only get blood easier and not have to keep poking him but also it would keep track of his blood pressure etc more accurately. I told him that I wasn't sure about it and I needed to call my sister. He was very nasty with me and told me that he wouldn't have ordered it if he didn't think it was necessary.
I called my sister and she told me while there were risks if he needed it then go for it. I told him I would allow it. The nurse asked me if I wanted to leave the room and I told her no. I wasn't going to pass out so I was staying. They put EMLA cream (which is a topical numbing cream) on his wrists and gave Carson medication to make him sleepy and then they put Lidocaine into the skin and told me that it would only numb the surface and it would still be painful. I stood and watched as this asshat poked and poked and poked and poked trying to find the artery in his left arm. Carson was blissfully unaware as he was drugged into dreamland. He finally stopped after about 45 minutes and decided to try the other arm. I know he and the nurses could tell that I was getting madder and madder. With the right arm he didn't even numb it up! With the first poke Carson woke up screaming. He dosed him 2 more times with the sleepy stuff (I'm not sure exactly what he gave him so I'm just calling it that lol) and Carson STILL screamed. He finally dosed him one last time and when Carson still fought him he was telling him, "Carson! You're a beast! If I had that much I'd be out until next week!" Then I noticed that he hadn't used the Lidocaine on this arm. He told me he thought it distorted the landmarks and that's why he couldn't find the artery. So guess what? After a half hour of poking I told him enough was enough. Carson needed a break, I needed a break, we were done. He was pissed and I didn't care. He left the room in a huff and I apologized to the nurse and told her I wasn't trying to be a bitch it was just that he wasn't getting anywhere and someone had to stand up for my little guy and if no one else was going to tell him to stop I would.
After he left Carson finally fell asleep. By then it was 2 am and I was exhausted. I climbed into bed with him and slept for a while. The nurses were nice to keep the monitor on silent and wouldn't turn the lights on to check on him. Being in the ICU we were basically in a giant fishbowl and some lights were dim but stayed on so they could see him from the hallway.
I woke up in the morning to the sound of voices outside the door. Rounds. Carson's nurse Tiffany was taking vitals as I listened to what was being said outside. I only caught bits and pieces but it was the doctor from the night before and he was telling the new crew about what was going on. I heard him say that Carson's sodium and potassium levels were high and if they screwed up and brought them down too fast his brain would swell causing damage or death. With that I was wide awake. Things were starting to fall into place in my mind. Carson was dying. That's why he was cold. His body was shutting down. What if we had waited to take him to the doctor in the morning? Would he have survived? Would he survive NOW?
I reached over to hold Carson's hand and found a Tegaderm patch on his wrist with EMLA cream under it. I looked at Tiffany and told her that I would not allow them to try again for the A-line. She just nodded and told me to tell the doc when he came in. Almost right on cue another doctor walked into the room and told me he was going to try to get blood from Carson's arm. If he could then the A-line wouldn't be necessary. He got a vein with one try. He filled a few vials of blood and was gone. Tiffany said that if we needed blood any time the rest of the day we would call for him because he could've placed that line the night before by throwing it from the other room he was so good.
Mike showed up around 11 am after taking Baylee to my moms and brought some things from home. Carson was having a hard time waking from all of the anesthesia from the night before but as soon as he heard his daddy's voice his little eyes popped open. Mike showed him that he had brought his iPad but he was still too tired to play with it. By this time Carson was looking like my son again. He had color and his face wasn't sunken in anymore. If anything it was puffy around the eyes, probably from all the fluids they were giving him. After a bit he woke up enough to want to get out of bed. With help steadying him and holding all of his cords he slowly walked around the bottom of the bed to the other side and started rummaging around in my purse looking for my car keys. He was ready to get the hell out of Dodge. Mike picked him up and you could see the relief in both their faces. He returned Carson to the bed and he started playing his iPad... with his foot. Both of his arms had IV's at one point but one had been taken out of this left arm and moved to the right so that one arm had 3 and the other had none but was still very sore.
The attending physician came in and told us that he was going to be moved to the diabetes/endocrinology wing of the hospital at some point during the day. She was concerned about how sleepy he was but when I told her how much they had doped him up she said she had heard about it. I told her that I wasn't very happy about it either and she said she had heard that too. She apologized and told me that it came down to experience. It's all fine and good to teach in a hospital but when it's the ICU I think people SHOULD have experience. You fuck up there and it could be life or death and for someone the night before it was death. They coded while I was on the phone with Mike giving him an update. Not that I'm blaming that doctor for it. It just happened. Imagine that. Losing your child on Christmas. That was almost my reality. That's such a hard pill to swallow.
More later
XX
Sunday, December 29, 2013
Saturday, December 28, 2013
Christmas: Part 1
Right now it is 3:30 am on Saturday December 28th 2013 and I am writing this post from a room inside Cincinnati Children's Hospital, where I have been since Christmas Day with Carson. If you read the last post you know that I was very worried and puzzled over what was happening to his tiny little body. I now know the answer to that question.
Monday of this week was pretty much like the rest of the week before. He would eat a tiny bit, drink plenty, show me his tongue and fall asleep. We were worried that he was coming down with some sort of bug because you could see in his eyes that he was 'off' but with no fever or any other symptoms I didn't take him to the doctor because I knew the routine of "Well, it's a virus just push fluids. As long as he is drinking and peeing and not dehydrated it will pass." I asked him to write yes or no when I asked does your throat hurt? No. Does your tummy hurt? No. Does your ears hurt? No. Does your head hurt? YES. I ran and got the Advil and gave him some thinking it would help. It seemed to perk him up a little but then he was back to his new 'normal' within a few hours.
Tuesday was Christmas Eve and things started to look a little worse. He started drinking a ton of water. The kid doesn't even like water but he was begging for it. We were worried that he was dehydrated so I went to Kroger and bought him Popsicles and juice. I told my mom that I would've puked with all the water he was drinking. He ate pizza for lunch and encouraged I decided to go get McDonald's for dinner thinking he would eat it too. By the time I got back he had started vomiting and was looking very pale with dark circles around his eyes. By this point I was thinking it was either strep or the flu. Still no fever though. He went to bed at 7pm on Christmas Eve.
He woke up at 5am on Christmas morning and the kid looked like he felt horrible. He had no interest in any of his new toys, even though he had gotten some really cool things that he would normally love (a tractor and a Thomas Train Set). By the time Mike got up and looked at him he wanted to go to an Urgent Care or the ER. I called my sister and she said to call our pediatrician. I called the number and asked for the on-call doc to call us back. Luckily for us it was our regular pediatrician that Carson sees on a normal basis. I described everything to him in as much detail as I could (after apologizing profusely for bothering him on Christmas and taking him away from his boys.) No fever, sore(ish) tongue hanging out of his mouth, pale, dark circles, vomiting, not eating, thirsty, peeing a lot, clear pee, gave Advil. Hand Foot and Mouth? Strep? He said it didn't sound like anything worthy of the ER and that I should bring him in the next day (Dec 26) at 8:45 and he'd see him first thing. Don't call. Just show up. BUT if I became worried then maybe we should take him to the ER but go to the satellite location, not the main hospital because since it was a holiday most Urgent Care locations would be closed and it would be like a full moon, plus the satellite location didn't have residents.
I hung up and felt reassured. Mike wasn't convinced. We decided that he would stay home with Carson while I took Baylee over to my parents for Christmas with the rest of my family. I was only there a few hours and decided that I needed to get home to check on Carson. Baylee didn't want to leave yet so I left her there to play with her cousins. When I got home I found Mike and Carson in our bed. Carson was breathing very heavy (like panting) and moaning. I told Mike we'd had enough. We were going to the ER. I knew what it felt like to have the body pain from the flu and thought maybe we'd catch it in time to get Tamiflu and it would help. I got Carson dressed and put him in the car.
We drove an hour to the emergency room. It was agony listening to him in the back of the car and I wanted so badly to just ram down the pedal and drive 80 the whole way there but knowing it was a holiday I knew we'd get nailed for speeding. When we got to the ER they triaged him quickly and rushed us to a room. The physician was already in the room waiting for us. I ran down the list of 'problems' to her and she asked me if he had any significant family medical history I should know about. I pointed to his dad and said, "He's type 1 diabetic." She nodded and asked, "Did you check HIS sugar?" Motioning to Carson. "No," I said. "I didn't even think of that." She told us that that was what all signs were pointing to and then she checked his sugar. 'Well, it's over 700." She sighed. I about fell over. Normal blood sugar is between 70 and 120. He had maxed out the meter and they had to send blood off to get an accurate reading.
They tried so hard to get IV's in to start fluids and try to get blood. When she finally came back into the room she told us his blood sugar was actually 1086!!! I have never even heard of blood sugar that high before. She calmly told us that was a type 1 diabetic and the reason for his panting and moaning was because he was in DKA (Diabetic Ketoacidosis) which means that he had acid in his blood and his body was trying to get rid of it any way it could. She told us that Carson was being transferred to the ICU at the main campus and that we would be there for about a week.
I wish I could say that I was numb, but I wasn't. I couldn't really process anything that was going on. Mike cried because he figured it was all his fault since he was a diabetic himself and felt like he gave it to Carson genetically. I was just so worried about (and for) my son that I couldn't even begin to have any type of emotion.
When the transfer team arrived the strapped Carson to a gurney and loaded him into an ambulance. We had decided that I would go with him and Mike should go home to be with Baylee and then he could come the next day to the hospital.
(more tomorrow)
XX
Monday of this week was pretty much like the rest of the week before. He would eat a tiny bit, drink plenty, show me his tongue and fall asleep. We were worried that he was coming down with some sort of bug because you could see in his eyes that he was 'off' but with no fever or any other symptoms I didn't take him to the doctor because I knew the routine of "Well, it's a virus just push fluids. As long as he is drinking and peeing and not dehydrated it will pass." I asked him to write yes or no when I asked does your throat hurt? No. Does your tummy hurt? No. Does your ears hurt? No. Does your head hurt? YES. I ran and got the Advil and gave him some thinking it would help. It seemed to perk him up a little but then he was back to his new 'normal' within a few hours.
Tuesday was Christmas Eve and things started to look a little worse. He started drinking a ton of water. The kid doesn't even like water but he was begging for it. We were worried that he was dehydrated so I went to Kroger and bought him Popsicles and juice. I told my mom that I would've puked with all the water he was drinking. He ate pizza for lunch and encouraged I decided to go get McDonald's for dinner thinking he would eat it too. By the time I got back he had started vomiting and was looking very pale with dark circles around his eyes. By this point I was thinking it was either strep or the flu. Still no fever though. He went to bed at 7pm on Christmas Eve.
He woke up at 5am on Christmas morning and the kid looked like he felt horrible. He had no interest in any of his new toys, even though he had gotten some really cool things that he would normally love (a tractor and a Thomas Train Set). By the time Mike got up and looked at him he wanted to go to an Urgent Care or the ER. I called my sister and she said to call our pediatrician. I called the number and asked for the on-call doc to call us back. Luckily for us it was our regular pediatrician that Carson sees on a normal basis. I described everything to him in as much detail as I could (after apologizing profusely for bothering him on Christmas and taking him away from his boys.) No fever, sore(ish) tongue hanging out of his mouth, pale, dark circles, vomiting, not eating, thirsty, peeing a lot, clear pee, gave Advil. Hand Foot and Mouth? Strep? He said it didn't sound like anything worthy of the ER and that I should bring him in the next day (Dec 26) at 8:45 and he'd see him first thing. Don't call. Just show up. BUT if I became worried then maybe we should take him to the ER but go to the satellite location, not the main hospital because since it was a holiday most Urgent Care locations would be closed and it would be like a full moon, plus the satellite location didn't have residents.
I hung up and felt reassured. Mike wasn't convinced. We decided that he would stay home with Carson while I took Baylee over to my parents for Christmas with the rest of my family. I was only there a few hours and decided that I needed to get home to check on Carson. Baylee didn't want to leave yet so I left her there to play with her cousins. When I got home I found Mike and Carson in our bed. Carson was breathing very heavy (like panting) and moaning. I told Mike we'd had enough. We were going to the ER. I knew what it felt like to have the body pain from the flu and thought maybe we'd catch it in time to get Tamiflu and it would help. I got Carson dressed and put him in the car.
We drove an hour to the emergency room. It was agony listening to him in the back of the car and I wanted so badly to just ram down the pedal and drive 80 the whole way there but knowing it was a holiday I knew we'd get nailed for speeding. When we got to the ER they triaged him quickly and rushed us to a room. The physician was already in the room waiting for us. I ran down the list of 'problems' to her and she asked me if he had any significant family medical history I should know about. I pointed to his dad and said, "He's type 1 diabetic." She nodded and asked, "Did you check HIS sugar?" Motioning to Carson. "No," I said. "I didn't even think of that." She told us that that was what all signs were pointing to and then she checked his sugar. 'Well, it's over 700." She sighed. I about fell over. Normal blood sugar is between 70 and 120. He had maxed out the meter and they had to send blood off to get an accurate reading.
They tried so hard to get IV's in to start fluids and try to get blood. When she finally came back into the room she told us his blood sugar was actually 1086!!! I have never even heard of blood sugar that high before. She calmly told us that was a type 1 diabetic and the reason for his panting and moaning was because he was in DKA (Diabetic Ketoacidosis) which means that he had acid in his blood and his body was trying to get rid of it any way it could. She told us that Carson was being transferred to the ICU at the main campus and that we would be there for about a week.
I wish I could say that I was numb, but I wasn't. I couldn't really process anything that was going on. Mike cried because he figured it was all his fault since he was a diabetic himself and felt like he gave it to Carson genetically. I was just so worried about (and for) my son that I couldn't even begin to have any type of emotion.
When the transfer team arrived the strapped Carson to a gurney and loaded him into an ambulance. We had decided that I would go with him and Mike should go home to be with Baylee and then he could come the next day to the hospital.
(more tomorrow)
XX
The Beginning Of Change
The last few days have become very stressful around here. Carson has not been feeling well, although I can't even begin to tell you how or why. I have noticed over the last week or so that he has been taking naps during the day in random situations. He hasn't really taken naps since he was about 2 years old. Two Mondays ago he fell asleep at school and then a few days later he fell asleep at 10 am in the grocery store after sleeping all night and getting up at 8 am.
It has really become a puzzle because I can tell that he doesn't feel good, you can see it in his eyes and he hasn't been eating very much. He is still drinking as usual and peeing a lot so I know he isn't dehydrated but Thursday he woke up and wanted me to hold him practically all day long. He will stick his tongue out and rub it with his hand and then take my hand to rub it too - it's VERY dry, which again is really weird because he has been drinking constantly and eating ice.
Thursday I took him to the grocery store with me to get a few things and while I was looking at something he frantically started trying to turn my head to the right. When I looked over at the items in the cooler it was pizza. He was flicking his fingers towards the pizza and squealing. I was happy to see he was interested in at least SOME food so I bought two. When I got home he kept trying to get it out of the bag while I was putting the groceries away. When I had the pizza made he didn't want it though. It was so frustrating to think that he was finally going to eat something and then he didn't. I did finally get him to eat some pretzels and dip, but only a few.
Yesterday (Friday) he was up early (6:30 am) and luckily Mike is off work for the holidays and was home so I didn't have to drag him out into the cold to walk Baylee to the bus. At 9 am yesterday Mike was getting ready to do some last minute Christmas shopping and was trying to tell Carson bye but he just went into his room with his iPad. I went to check on him just a couple minutes later and he was sound asleep on his bed! In his whole life he has never just gone to bed. He slept until 11 am. When he got up he didn't want to eat anything again. I could see that he didn't feel good and he was just lying around and contemplated taking him to the doctor but I know from previous experiences that if I take him with no fever and he's drinking and peeing they'll just tell me to watch him and see if it gets better in a few weeks. I tried to get him to take some Tylenol but after holding him down and trying to stuff them in his mouth he started crying and I figured crying would just make him feel even worse so I left it alone.
I had to leave at noon to go help at Baylee's school for their class Christmas party and left Carson home with Mike. Since I was at school I didn't have my phone for almost 3 1/2 hours and was very anxious about how Carson was feeling. When I called Mike he said that he had perked up and had even eaten a bit for lunch. I stopped and got LaRosa's Pizza for dinner (a Cincinnati favorite) and when I got home Carson ate several pieces. He was happy and content and things seemed to be looking up. At 6 pm he fell asleep on the living room floor. My heart sank. We carried him to bed and changed his diaper hoping it would wake him up since it was so late in the day but he stayed sound asleep. I went to bed at 9 thinking if he did wake up he would come into my bedroom looking for me but it was hard to sleep. Mike was still up and had lights on and I didn't want to shut the door because that would be a change in the routine and Carson doesn't handle change very well.
(This Post was From December 20TH I will not finish it but thought it was important for everyone to read. Next post will explain)
It has really become a puzzle because I can tell that he doesn't feel good, you can see it in his eyes and he hasn't been eating very much. He is still drinking as usual and peeing a lot so I know he isn't dehydrated but Thursday he woke up and wanted me to hold him practically all day long. He will stick his tongue out and rub it with his hand and then take my hand to rub it too - it's VERY dry, which again is really weird because he has been drinking constantly and eating ice.
Thursday I took him to the grocery store with me to get a few things and while I was looking at something he frantically started trying to turn my head to the right. When I looked over at the items in the cooler it was pizza. He was flicking his fingers towards the pizza and squealing. I was happy to see he was interested in at least SOME food so I bought two. When I got home he kept trying to get it out of the bag while I was putting the groceries away. When I had the pizza made he didn't want it though. It was so frustrating to think that he was finally going to eat something and then he didn't. I did finally get him to eat some pretzels and dip, but only a few.
Yesterday (Friday) he was up early (6:30 am) and luckily Mike is off work for the holidays and was home so I didn't have to drag him out into the cold to walk Baylee to the bus. At 9 am yesterday Mike was getting ready to do some last minute Christmas shopping and was trying to tell Carson bye but he just went into his room with his iPad. I went to check on him just a couple minutes later and he was sound asleep on his bed! In his whole life he has never just gone to bed. He slept until 11 am. When he got up he didn't want to eat anything again. I could see that he didn't feel good and he was just lying around and contemplated taking him to the doctor but I know from previous experiences that if I take him with no fever and he's drinking and peeing they'll just tell me to watch him and see if it gets better in a few weeks. I tried to get him to take some Tylenol but after holding him down and trying to stuff them in his mouth he started crying and I figured crying would just make him feel even worse so I left it alone.
I had to leave at noon to go help at Baylee's school for their class Christmas party and left Carson home with Mike. Since I was at school I didn't have my phone for almost 3 1/2 hours and was very anxious about how Carson was feeling. When I called Mike he said that he had perked up and had even eaten a bit for lunch. I stopped and got LaRosa's Pizza for dinner (a Cincinnati favorite) and when I got home Carson ate several pieces. He was happy and content and things seemed to be looking up. At 6 pm he fell asleep on the living room floor. My heart sank. We carried him to bed and changed his diaper hoping it would wake him up since it was so late in the day but he stayed sound asleep. I went to bed at 9 thinking if he did wake up he would come into my bedroom looking for me but it was hard to sleep. Mike was still up and had lights on and I didn't want to shut the door because that would be a change in the routine and Carson doesn't handle change very well.
(This Post was From December 20TH I will not finish it but thought it was important for everyone to read. Next post will explain)
Friday, December 20, 2013
School(ish)
Monday was supposed to be another school day for Carson but thanks to Mother Nature, we got the day off. Baylee on the other hand had to go to school because she is in a different school district and they chose a 2 hour delay over closing since they have already used 2 of their snow days and it's not even winter yet.
So after getting her on the bus at almost 10 am it felt like I had lost the whole day. Carson and I had breakfast and then played for a while with blocks and a really cool sensory ball that I got him a while ago. It is small, about the size of a softball, and lights up when it is bounced. It's cute because he refuses to touch it while the lights are flashing but as soon as they go off he will pick it up and hurl it at me. We probably played with the ball for close to an hour. We rolled it to each other on the floor and then across our coffee table. It was nice to hear him giggling because he was having so much fun.
After the ball I pulled out some copies of a connect the dots page that Jen had printed for me and I helped Carson use a marker and trace the numbers. He did 6 pages in total and came up with a train, seal, pelican, snowman, Santa and sleigh. Baylee had left out some crayons from her little craft packet she had opened from her countdown to Christmas bag so I had him color the pictures that he had made. Getting just a few scribbles from him made me pretty happy.
I then thought it would be fun for Carson to jump off of the coffee table a few times. I could get him to bend his knees in preparation for the jump but the little cheater would just slide down off of the table and not jump off. He was having fun jumping up and down on the floor when I put in a Baby Signing Time DVD for him to watch. I caught it on video but for some reason I can't post them on here.
He has been more interested in watching the Signing Time videos lately. He will find them on the shelf and bring them to me. Baylee helped him learn 'hat' the other day (open hand, pat the top of your head) and we watched him try to sign 'no' (thumb, pointer and middle fingers closing together) following along with the video. It's cute that he tried even though he doesn't have the fine motor dexterity to do it. He seems to be picking the signs up much faster now. I am currently trying to teach him the ASL alphabet. I sign along while he is listening to Super Why's Alpha Pig sing the alphabet. I know that he is at least understanding that I am signing the alphabet because he now watches my hand while he is listening and pulls at my hand if I'm not signing.
The last thing I worked on with my little man was a little bit of strength training if you will. I have a whole box of these tubes. They extend when you pull them at the ends (and make a pretty cool sound when you're doing it too.)
So after getting her on the bus at almost 10 am it felt like I had lost the whole day. Carson and I had breakfast and then played for a while with blocks and a really cool sensory ball that I got him a while ago. It is small, about the size of a softball, and lights up when it is bounced. It's cute because he refuses to touch it while the lights are flashing but as soon as they go off he will pick it up and hurl it at me. We probably played with the ball for close to an hour. We rolled it to each other on the floor and then across our coffee table. It was nice to hear him giggling because he was having so much fun.
After the ball I pulled out some copies of a connect the dots page that Jen had printed for me and I helped Carson use a marker and trace the numbers. He did 6 pages in total and came up with a train, seal, pelican, snowman, Santa and sleigh. Baylee had left out some crayons from her little craft packet she had opened from her countdown to Christmas bag so I had him color the pictures that he had made. Getting just a few scribbles from him made me pretty happy.
I then thought it would be fun for Carson to jump off of the coffee table a few times. I could get him to bend his knees in preparation for the jump but the little cheater would just slide down off of the table and not jump off. He was having fun jumping up and down on the floor when I put in a Baby Signing Time DVD for him to watch. I caught it on video but for some reason I can't post them on here.
He has been more interested in watching the Signing Time videos lately. He will find them on the shelf and bring them to me. Baylee helped him learn 'hat' the other day (open hand, pat the top of your head) and we watched him try to sign 'no' (thumb, pointer and middle fingers closing together) following along with the video. It's cute that he tried even though he doesn't have the fine motor dexterity to do it. He seems to be picking the signs up much faster now. I am currently trying to teach him the ASL alphabet. I sign along while he is listening to Super Why's Alpha Pig sing the alphabet. I know that he is at least understanding that I am signing the alphabet because he now watches my hand while he is listening and pulls at my hand if I'm not signing.
The last thing I worked on with my little man was a little bit of strength training if you will. I have a whole box of these tubes. They extend when you pull them at the ends (and make a pretty cool sound when you're doing it too.)
When they're brand new they are actually really hard to pull. I make him pull on them until it is fully extended and then push it back together. I can usually get him to repeat the process a few times before he just starts chewing on it. I can only get maybe a weeks' worth out of one of these tubes then we have to get out a new one because they are so chewed up. I buy these at a discount school supply store but I have recently seen them at our local grocery store. They work great for little fingers.
So that was our day. It was great. Now we have 2 weeks off for the holidays.
XX
So that was our day. It was great. Now we have 2 weeks off for the holidays.
XX
Thursday, December 19, 2013
Waiting for the Christmas Spirit
Christmas is fast approaching and I have to be honest, I'm having trouble getting into the spirit this year. I don't know if it's because I'm not going to work anymore which means I'm not driving home in the evenings seeing all of the lights on the houses or if it's just because Thanksgiving was late and it doesn't seem like we've had a lot of time to really plan things out? I'm not really sure.
In some way I was hoping that maybe this would be the year that Carson would understand something about the holiday. Santa and the reindeer, Christmas trees, ANYTHING. Even if it was just that you get presents. If he knows, he certainly doesn't act like it. I bought him a few apps for the iPad about Christmas and Christmas words (gingerbread house, gift, tree etc.) and he plays them frequently. One thing that I did notice was he has caught on to how secretive I have been about presents. In years past I have just wrapped presents in front of him knowing that he couldn't rat me out. This year I haven't let him see anything that I have wrapped for anyone and he has tried to sneak peeks as he's nonchalantly strolling by me. The other day I had left a gift for him in the back of my car and I needed to get it out so that his stroller would fit. I thought that he was in his room when I came into the house but no he was standing right in front of me. I tucked it behind my back and took off running to my bed room to try to hide it from him but he was hot on my trail. I chucked the box into my closet and tried to act like nothing was going on but I have caught him several times trying to get into my closet. I know he is looking for it.
Last year I made a point to have a countdown to Christmas wrapping a small gift for each day starting December 1 and having something planned for one day on each of the weekends for the family to do together. I have done the same for this year, Baylee usually opens the gift when she is getting ready for school, but it doesn't feel the same. For one, the gift is mostly just for Baylee and not for both of them and it's completely unintentional. Carson's dietary restrictions make it very hard for him to have 'treats' so if I get a candy bars for them, he won't eat one. I know that the immediate go-to in your mind is, "then why get candy?" I get that. I asked myself the same question. Here's the answer. It doesn't matter what is in the packages. He has no interest. Period. So why deny Baylee? I even got little coloring packs and crafty things to make ornaments and again he has absolutely no interest.
For the weekend excursions the first one I had planned was to go to a local attraction here that Carson LOVES. EnterTRAINment Junction. It is a railroad museum, model train display and a fun house. They even turn part of it into the North Pole and you can meet Mrs. Claus and get a cookie from her and then get a picture with Santa. I was really excited to go and then we got hit with a snow and ice storm. So much for those plans. Last weekend was scheduled for a gingerbread house-making session at our library. They do it every year and supply all of the things needed for over 200 families. When the day came, Mike decided that it just wasn't for him or Carson so he stayed home and sent me and Baylee alone. So much for our 'family' outings. This coming weekend is the ballet. Baylee and I are going to see The Nutcracker. Again, without the boys.
I'm on a mission now to try to figure out how to include Carson in something for the holidays. I have been looking on Pinterest for ideas of just small things that I might be able to get him to play with or make and so far it's a bust. So now I'm thinking that maybe I will just pop some popcorn and get a couple holiday movies off Netflix or at the library and see if he will hang out with us for a bit. There are also some drive-thru light displays so I'm thinking we may go do that one of these nights.
I know that it seems like I'm complaining a lot, I just wish things could be different for him... even for just one night. But I know that it could be a lot worse too. Our local paper runs stories everyday about families who have wish lists for their children with disabilities. Something as simple as an extra fridge to keep medications cold or a back-up generator so they don't have to scramble to a motel if the power goes out so the child's ventilator won't stop. Truly devastating things. Carson is impaired mentally and physically but as far as they know (not knowing much about his diagnosis since they don't have anyone diagnosed over the age of 19) there is nothing directly related to his microdeletion that will end his life early. The only thing that I can think of would be his hypotonia affecting his heart but I think that would only be if it goes undiagnosed but seeing as we see a cardiologist regularly I think he will be okay.
So tonight I'm going to bed with hopes that maybe this weekend we will be able to find something for all of us to do as a family and maybe just maybe Christmas morning Carson will surprise us and run to the tree to see what Santa has left him. If he doesn't then there's always hope for next year.
XX
In some way I was hoping that maybe this would be the year that Carson would understand something about the holiday. Santa and the reindeer, Christmas trees, ANYTHING. Even if it was just that you get presents. If he knows, he certainly doesn't act like it. I bought him a few apps for the iPad about Christmas and Christmas words (gingerbread house, gift, tree etc.) and he plays them frequently. One thing that I did notice was he has caught on to how secretive I have been about presents. In years past I have just wrapped presents in front of him knowing that he couldn't rat me out. This year I haven't let him see anything that I have wrapped for anyone and he has tried to sneak peeks as he's nonchalantly strolling by me. The other day I had left a gift for him in the back of my car and I needed to get it out so that his stroller would fit. I thought that he was in his room when I came into the house but no he was standing right in front of me. I tucked it behind my back and took off running to my bed room to try to hide it from him but he was hot on my trail. I chucked the box into my closet and tried to act like nothing was going on but I have caught him several times trying to get into my closet. I know he is looking for it.
Last year I made a point to have a countdown to Christmas wrapping a small gift for each day starting December 1 and having something planned for one day on each of the weekends for the family to do together. I have done the same for this year, Baylee usually opens the gift when she is getting ready for school, but it doesn't feel the same. For one, the gift is mostly just for Baylee and not for both of them and it's completely unintentional. Carson's dietary restrictions make it very hard for him to have 'treats' so if I get a candy bars for them, he won't eat one. I know that the immediate go-to in your mind is, "then why get candy?" I get that. I asked myself the same question. Here's the answer. It doesn't matter what is in the packages. He has no interest. Period. So why deny Baylee? I even got little coloring packs and crafty things to make ornaments and again he has absolutely no interest.
For the weekend excursions the first one I had planned was to go to a local attraction here that Carson LOVES. EnterTRAINment Junction. It is a railroad museum, model train display and a fun house. They even turn part of it into the North Pole and you can meet Mrs. Claus and get a cookie from her and then get a picture with Santa. I was really excited to go and then we got hit with a snow and ice storm. So much for those plans. Last weekend was scheduled for a gingerbread house-making session at our library. They do it every year and supply all of the things needed for over 200 families. When the day came, Mike decided that it just wasn't for him or Carson so he stayed home and sent me and Baylee alone. So much for our 'family' outings. This coming weekend is the ballet. Baylee and I are going to see The Nutcracker. Again, without the boys.
I'm on a mission now to try to figure out how to include Carson in something for the holidays. I have been looking on Pinterest for ideas of just small things that I might be able to get him to play with or make and so far it's a bust. So now I'm thinking that maybe I will just pop some popcorn and get a couple holiday movies off Netflix or at the library and see if he will hang out with us for a bit. There are also some drive-thru light displays so I'm thinking we may go do that one of these nights.
I know that it seems like I'm complaining a lot, I just wish things could be different for him... even for just one night. But I know that it could be a lot worse too. Our local paper runs stories everyday about families who have wish lists for their children with disabilities. Something as simple as an extra fridge to keep medications cold or a back-up generator so they don't have to scramble to a motel if the power goes out so the child's ventilator won't stop. Truly devastating things. Carson is impaired mentally and physically but as far as they know (not knowing much about his diagnosis since they don't have anyone diagnosed over the age of 19) there is nothing directly related to his microdeletion that will end his life early. The only thing that I can think of would be his hypotonia affecting his heart but I think that would only be if it goes undiagnosed but seeing as we see a cardiologist regularly I think he will be okay.
So tonight I'm going to bed with hopes that maybe this weekend we will be able to find something for all of us to do as a family and maybe just maybe Christmas morning Carson will surprise us and run to the tree to see what Santa has left him. If he doesn't then there's always hope for next year.
XX
Sunday, December 15, 2013
School Options
This past week has been a bit of a challenge for me. I have had this constant back and forth battle in my mind about Carson and school. I am so afraid that I am going to make the wrong decision that it has been weighing heavily on me. I finally had to tell Mike that I needed a little time to just sit down and figure some stuff out. So today that's what I did.
I started out by making a list of pros and cons about Carson going to public school vs. being home schooled. Here's what I basically came up with:
PUBLIC SCHOOLING:
PROS: CONS:
Free School dist. levy failed multiple times.
Socialization Bullying/ being picked on.
Therapies included Not being able to incorporate techniques
at home b/c I won't see them first hand.
Someone else is doing the work I won't know 100% he is safe.
Will require diapering.
Would need a 1-1 aide at all times.
Would require an IEP.
School is multiple levels with no
handicapped access.
Can't have a male teacher (terrified of
men.)
Half day kindergarten Can't ride regular bus.
Can't sit for long periods of time.
Very attached to me. Cries outside the
bathroom door.
HOME SCHOOL:
PROS: CONS:
No worries about bullying Can be expensive
No worries about diapering Will be time consuming
No worries about transportation He won't get a diploma
Can fit curriculum to his needs Will have to deal with school board
Flexible schedule No socialization
He will be more comfortable Will have to find therapies elsewhere
Can buy/find items and ideas
online
Can get help from my sister
He does better at home than school
now.
Will be with me or Mike
So that's the pared down list. My actual list has tons more things that are probably pretty petty and not really relevant. After I made the list I decided to get online just to see what I could find and I found A LOT. There are several companies where you can spend roughly $300-$600 and buy an entire year's worth of books, planners etc in a bundle. It even gives you a timeline etc. This made me feel so much better about things. I know there are things that Carson already knows and things that he will probably NEVER know. I'm okay with this. I am just happy that I now have a good starting point.
At this point I've already made the decision to just bite the bullet and apply to home school him. The superintendent of the school district will have 14 days to review my request and make a decision. Once (or if) I get the go-ahead then I will purchase one of these bundles and go from there. The way I figure it, it would be easier on him for me to try to home school him first and see if I can do it. If I can't or it becomes clear that it isn't the best thing for him then I can enroll him in school. I would much rather do that than send him to school and stress him out and have that turn out to be a disaster. I know that either way I am taking a risk. I just don't want to hurt him. For all I know, he may love school if I send him. This is why it has become such a hard decision for me. I don't want to brag on myself but I like to think that I am at least a little smart. I graduated with honors, in the National Honor Society and carried a 3.8 GPA. I know that was a while ago (15 years to be exact! UGH! I'm getting old!!) and things have changed but I still think that I can do a good job.
But aside from that, when I look at the pros and cons I just feel that unless he becomes significantly more mature or cognitively closer to his actual age then I'm sticking to my plan. Hell, I think even if he started talking or could communicate to me with his iPad how his day goes I would feel better about sending him to school. It's more just the fact that I would have to take the word of his teacher and/or aide that everything went okay and after seeing the woman on the news in Florida who soaked the crayons in hot sauce and purposely gave them to an autistic child just so they would eat them!!! No thanks. That woman was fired from the school district and then the courts just made them GIVE HER THE JOB BACK because she wasn't trying to punish the kid, just deter him from eating art supplies. And I know that is just one incident but I couldn't imagine being that child's parents.
I wish I had all the answers but I don't. We're back to school tomorrow and I still have to figure out a way to break the news to Amber that I think I'm just going to leave things the way they are. Wish me luck.
XX
I started out by making a list of pros and cons about Carson going to public school vs. being home schooled. Here's what I basically came up with:
PUBLIC SCHOOLING:
PROS: CONS:
Free School dist. levy failed multiple times.
Socialization Bullying/ being picked on.
Therapies included Not being able to incorporate techniques
at home b/c I won't see them first hand.
Someone else is doing the work I won't know 100% he is safe.
Will require diapering.
Would need a 1-1 aide at all times.
Would require an IEP.
School is multiple levels with no
handicapped access.
Can't have a male teacher (terrified of
men.)
Half day kindergarten Can't ride regular bus.
Can't sit for long periods of time.
Very attached to me. Cries outside the
bathroom door.
HOME SCHOOL:
PROS: CONS:
No worries about bullying Can be expensive
No worries about diapering Will be time consuming
No worries about transportation He won't get a diploma
Can fit curriculum to his needs Will have to deal with school board
Flexible schedule No socialization
He will be more comfortable Will have to find therapies elsewhere
Can buy/find items and ideas
online
Can get help from my sister
He does better at home than school
now.
Will be with me or Mike
So that's the pared down list. My actual list has tons more things that are probably pretty petty and not really relevant. After I made the list I decided to get online just to see what I could find and I found A LOT. There are several companies where you can spend roughly $300-$600 and buy an entire year's worth of books, planners etc in a bundle. It even gives you a timeline etc. This made me feel so much better about things. I know there are things that Carson already knows and things that he will probably NEVER know. I'm okay with this. I am just happy that I now have a good starting point.
At this point I've already made the decision to just bite the bullet and apply to home school him. The superintendent of the school district will have 14 days to review my request and make a decision. Once (or if) I get the go-ahead then I will purchase one of these bundles and go from there. The way I figure it, it would be easier on him for me to try to home school him first and see if I can do it. If I can't or it becomes clear that it isn't the best thing for him then I can enroll him in school. I would much rather do that than send him to school and stress him out and have that turn out to be a disaster. I know that either way I am taking a risk. I just don't want to hurt him. For all I know, he may love school if I send him. This is why it has become such a hard decision for me. I don't want to brag on myself but I like to think that I am at least a little smart. I graduated with honors, in the National Honor Society and carried a 3.8 GPA. I know that was a while ago (15 years to be exact! UGH! I'm getting old!!) and things have changed but I still think that I can do a good job.
But aside from that, when I look at the pros and cons I just feel that unless he becomes significantly more mature or cognitively closer to his actual age then I'm sticking to my plan. Hell, I think even if he started talking or could communicate to me with his iPad how his day goes I would feel better about sending him to school. It's more just the fact that I would have to take the word of his teacher and/or aide that everything went okay and after seeing the woman on the news in Florida who soaked the crayons in hot sauce and purposely gave them to an autistic child just so they would eat them!!! No thanks. That woman was fired from the school district and then the courts just made them GIVE HER THE JOB BACK because she wasn't trying to punish the kid, just deter him from eating art supplies. And I know that is just one incident but I couldn't imagine being that child's parents.
I wish I had all the answers but I don't. We're back to school tomorrow and I still have to figure out a way to break the news to Amber that I think I'm just going to leave things the way they are. Wish me luck.
XX
Tuesday, December 10, 2013
School: Day 14
It was sort of a relief to take Carson to school yesterday because we were hit with a snowstorm and had been stuck in the house since last Thursday. Mike ventured out a couple of times in his Suburban but we didn't want to risk damaging my car since I usually take the kids where they need to go.
I usually let Carson walk through the parking lot to the school but since it was so cold and snowy I just wanted to get in as quick as possible so I carried him. When we got to the front door he reached over and pressed the button to the intercom without me saying anything to him. It always makes me happy to see that he comprehends something, and him seeing me do it week after week has paid off.
We met Patty in the hallway and she already had her game ready to go. She was using the letter mats again and the mats were in the hallway by the front door and the numbers were up on the landing again. She told me that she had contemplated putting them on the larger set of stairs but she wants him to gain confidence before she does that. I signed us in and when I returned Patty introduced me to another woman who works as a therapist in the school on certain days. She and I had a small conversation while Patty continued working with Carson on the stairs. I really wanted to pay attention to how he was doing but it felt rude to just walk away. At one point I guess he felt as if I wasn't paying enough attention to him either so he brought me the number 4, which was enough to break the conversation. He is doing so much better week by week with the stairs. He is gaining strength and the motor skills to come down by himself just holding onto the railing. He didn't understand that he needed to switch hands with what he was carrying and was trying to hold onto his number and the railing at the same time. Still working on that one.
Down in the classroom I showed Patty a video that I had taken of him dancing in the kitchen. In the middle of the video he does a series of hops all by himself! I don't really think that he was even thinking about doing them it was just a fleeting moment. She was impressed both with him doing it and me catching it on video. To be honest it was completely by accident. I was just taping him because he was shaking his little butt all around the kitchen and it was funny and something I wanted Mike to see. I also told Jen about his exhibitionism now that he is able to unzip his jammies and escape to nakedness. (I can't tell you how many things in my house have been peed on in the last few days!) She of course was elated to hear he can work zippers now and having a young son herself completely cracked up when I told her about him stripping naked and hiding from me so I couldn't put clothes back on him.
For the class meeting he got to be the weather watcher again and chose cloudy, which was 100% correct. He was also able to put a hat on the weather panda. I asked Carson to show LaQuita 'hat' and he signed it. (Open hand with fingers together, palm down and pat your head).
LaQuita read "The Night Before the Night Before Christmas" to the boys and it was really funny. The mom has the flu and the dad is failing miserably at handling all the last minute stuff. Carson sat on his peanut and stayed connected with the book through the entire story. He only tried to get up once when the other little boy in the class was whining that he wanted to play.
Jen worked with Carson with this stuff that was like play dough but it wasn't. It was made by Handwriting Without Tears and it's letter dough. It's rubbery and has an interesting smell to it. It was hard for her to get him to even touch it. Once she started shaping them into letters he was interested, but still didn't want to mess with it. She rolled pieces into strips and was making him cut them. He got through about 2 of them before he started shivering every time it was cut. That is a normal sensory reaction for him. I'm honestly surprised he didn't puke on her. I warned her that he wasn't reacting well to it but she was a trooper and carried on anyway.
Patty was able to work with him on jumping but he wasn't really in the mood. It was weird because he is usually very vocal and today he was as quiet as a mouse. He was noodle-boy in Patty's arms and she had a hard time getting him to do anything. She even tried building a tower with the big cardboard blocks and letting him knock them down by throwing bean bag turtles at them. He just stood there and let her use hand-over-hand to make him throw them without even smiling like he normally would.
Carson and Patty throwing turtles. On the table is the letter dough.
When time was up and it was time to switch we went to the table LaQuita was at and again it was really hard to get him to do anything even with the app he was doing so great with last week. We tried and tried and you could just tell that something was off so we just decided to give him a break. He ran over to an alphabet puzzle on the floor and I was showing LaQuita the apps that he currently has on his iPad.
At some point Amber left the room and it was just LaQuita and I (and Carson but he was in alpha-world so that doesn't count) and we were discussing how smart he is, and I'm not just saying that as his mama either. Just this past week he began learning about places in the world and the ones he keeps showing me are Kilimanjaro, the Taj Mahal, and Neuschwanstein! Certainly not normal things for a 5 year old to be learning not only what they look like but how to spell them as well. I was telling her that one thing that I am concerned about with home school is that I really don't know where to start. He IS so smart but there are basic things that he doesn't know yet. If I were to send him to school there's the worry that he is going to be beyond bored, especially with being on an IEP where he isn't going to learn the same level of math, science etc as other children.
She could see where I was coming from but then I think I stuck my foot in my mouth. Amber was still out of the room and so I was telling LaQuita how Amber has really been campaigning for me to send Carson to school full-time but that at this point I really don't see a point in that. I was just curious if there was a way to find out what they need to know for kindergarten, 1st grade etc. She says "Oh, I don't know. But here's Amber. Just ask her..." I turn and see Amber coming through the door and she had a very pissed-off look on her face. I don't know if it had anything to do with me but I think it did. I think she was in the hall and heard what I was saying to LaQuita (which wasn't bad or anything about HER just that I thought it was pointless for Carson to go full-time.)
Amber then went on this passionate rant about how he needs socialization and that he would only be upset for a few weeks and then he would adjust to a new schedule. She was saying that she would be able to write an assessment for him for kindergarten that stated that he needs help getting in the building and to his class and is still in diapers etc etc and that would help him get a 1:1 aide without having to fight for it. She also told me that if we decided to send him to private school for kindergarten and he is still on an IEP from public school then he would be able to get that $20,000 scholarship to go. She just kept saying if you're going to try school then why not do it with people that you know and trust?? But then here's the kicker I ask her how she's able to handle so many kids with special needs in her class and she says there are 2 helpers in the room now but in January there will be a third. That and he would lose Jen and Patty but gain Amy back.
So while she may have had me at first, this last information really got me thinking. She's saying I know and trust these people but the only one in the room that I would know is her. I don't know any of the other aides (nor does Carson) and then he would have a new OT (which he has ALWAYS had Jen) and a new PT (he's had Patty for 2 years). I can't do it. I have really beaten myself up over this over the entire weekend. I have second-guessed myself and triple-guessed myself. I know that there are only 5 months of school left and then he's not going to have them anymore anyways but that's not the point. I even went as far as to look up the special education schools she was talking about. They're no where remotely close to us. It would take us at least an hour one way to get there every day and that's not convenient for us.
I am home schooling him. I know my son better than anyone else and while I know that I am trying to shelter him from things, but why not? I mean is that so bad? I'm not feeding him to the wolves just yet. I know that I'm probably over-reacting but it makes me feel better knowing that he is going to be safe and loved and protected. If something truly significant comes along and changes my mind then so be it. But for now I know what's best for my son.
Somewhere along this rant/conversation that Amber LaQuita and I had Carson fell asleep on my shoulder all bundled up in his coat. I carried him to the car and drove around with him for an hour while we waited for Baylee to get off the bus. After his nap he seemed to be back on his game. I hope that he was just tired and is not getting sick. Time will tell. Today was a snow day again because we got more snow last night so it was just another lazy day with the kids staying in their pajamas. But right now I'm off to bed. Back up in 6 hours to get Baylee ready for school. No more snow until the weekend (I hope). I'm already sick of winter and it's not even winter yet ;)
XX
I usually let Carson walk through the parking lot to the school but since it was so cold and snowy I just wanted to get in as quick as possible so I carried him. When we got to the front door he reached over and pressed the button to the intercom without me saying anything to him. It always makes me happy to see that he comprehends something, and him seeing me do it week after week has paid off.
We met Patty in the hallway and she already had her game ready to go. She was using the letter mats again and the mats were in the hallway by the front door and the numbers were up on the landing again. She told me that she had contemplated putting them on the larger set of stairs but she wants him to gain confidence before she does that. I signed us in and when I returned Patty introduced me to another woman who works as a therapist in the school on certain days. She and I had a small conversation while Patty continued working with Carson on the stairs. I really wanted to pay attention to how he was doing but it felt rude to just walk away. At one point I guess he felt as if I wasn't paying enough attention to him either so he brought me the number 4, which was enough to break the conversation. He is doing so much better week by week with the stairs. He is gaining strength and the motor skills to come down by himself just holding onto the railing. He didn't understand that he needed to switch hands with what he was carrying and was trying to hold onto his number and the railing at the same time. Still working on that one.
Down in the classroom I showed Patty a video that I had taken of him dancing in the kitchen. In the middle of the video he does a series of hops all by himself! I don't really think that he was even thinking about doing them it was just a fleeting moment. She was impressed both with him doing it and me catching it on video. To be honest it was completely by accident. I was just taping him because he was shaking his little butt all around the kitchen and it was funny and something I wanted Mike to see. I also told Jen about his exhibitionism now that he is able to unzip his jammies and escape to nakedness. (I can't tell you how many things in my house have been peed on in the last few days!) She of course was elated to hear he can work zippers now and having a young son herself completely cracked up when I told her about him stripping naked and hiding from me so I couldn't put clothes back on him.
For the class meeting he got to be the weather watcher again and chose cloudy, which was 100% correct. He was also able to put a hat on the weather panda. I asked Carson to show LaQuita 'hat' and he signed it. (Open hand with fingers together, palm down and pat your head).
LaQuita read "The Night Before the Night Before Christmas" to the boys and it was really funny. The mom has the flu and the dad is failing miserably at handling all the last minute stuff. Carson sat on his peanut and stayed connected with the book through the entire story. He only tried to get up once when the other little boy in the class was whining that he wanted to play.
Jen worked with Carson with this stuff that was like play dough but it wasn't. It was made by Handwriting Without Tears and it's letter dough. It's rubbery and has an interesting smell to it. It was hard for her to get him to even touch it. Once she started shaping them into letters he was interested, but still didn't want to mess with it. She rolled pieces into strips and was making him cut them. He got through about 2 of them before he started shivering every time it was cut. That is a normal sensory reaction for him. I'm honestly surprised he didn't puke on her. I warned her that he wasn't reacting well to it but she was a trooper and carried on anyway.
Patty was able to work with him on jumping but he wasn't really in the mood. It was weird because he is usually very vocal and today he was as quiet as a mouse. He was noodle-boy in Patty's arms and she had a hard time getting him to do anything. She even tried building a tower with the big cardboard blocks and letting him knock them down by throwing bean bag turtles at them. He just stood there and let her use hand-over-hand to make him throw them without even smiling like he normally would.
Carson and Patty throwing turtles. On the table is the letter dough.
When time was up and it was time to switch we went to the table LaQuita was at and again it was really hard to get him to do anything even with the app he was doing so great with last week. We tried and tried and you could just tell that something was off so we just decided to give him a break. He ran over to an alphabet puzzle on the floor and I was showing LaQuita the apps that he currently has on his iPad.
At some point Amber left the room and it was just LaQuita and I (and Carson but he was in alpha-world so that doesn't count) and we were discussing how smart he is, and I'm not just saying that as his mama either. Just this past week he began learning about places in the world and the ones he keeps showing me are Kilimanjaro, the Taj Mahal, and Neuschwanstein! Certainly not normal things for a 5 year old to be learning not only what they look like but how to spell them as well. I was telling her that one thing that I am concerned about with home school is that I really don't know where to start. He IS so smart but there are basic things that he doesn't know yet. If I were to send him to school there's the worry that he is going to be beyond bored, especially with being on an IEP where he isn't going to learn the same level of math, science etc as other children.
She could see where I was coming from but then I think I stuck my foot in my mouth. Amber was still out of the room and so I was telling LaQuita how Amber has really been campaigning for me to send Carson to school full-time but that at this point I really don't see a point in that. I was just curious if there was a way to find out what they need to know for kindergarten, 1st grade etc. She says "Oh, I don't know. But here's Amber. Just ask her..." I turn and see Amber coming through the door and she had a very pissed-off look on her face. I don't know if it had anything to do with me but I think it did. I think she was in the hall and heard what I was saying to LaQuita (which wasn't bad or anything about HER just that I thought it was pointless for Carson to go full-time.)
Amber then went on this passionate rant about how he needs socialization and that he would only be upset for a few weeks and then he would adjust to a new schedule. She was saying that she would be able to write an assessment for him for kindergarten that stated that he needs help getting in the building and to his class and is still in diapers etc etc and that would help him get a 1:1 aide without having to fight for it. She also told me that if we decided to send him to private school for kindergarten and he is still on an IEP from public school then he would be able to get that $20,000 scholarship to go. She just kept saying if you're going to try school then why not do it with people that you know and trust?? But then here's the kicker I ask her how she's able to handle so many kids with special needs in her class and she says there are 2 helpers in the room now but in January there will be a third. That and he would lose Jen and Patty but gain Amy back.
So while she may have had me at first, this last information really got me thinking. She's saying I know and trust these people but the only one in the room that I would know is her. I don't know any of the other aides (nor does Carson) and then he would have a new OT (which he has ALWAYS had Jen) and a new PT (he's had Patty for 2 years). I can't do it. I have really beaten myself up over this over the entire weekend. I have second-guessed myself and triple-guessed myself. I know that there are only 5 months of school left and then he's not going to have them anymore anyways but that's not the point. I even went as far as to look up the special education schools she was talking about. They're no where remotely close to us. It would take us at least an hour one way to get there every day and that's not convenient for us.
I am home schooling him. I know my son better than anyone else and while I know that I am trying to shelter him from things, but why not? I mean is that so bad? I'm not feeding him to the wolves just yet. I know that I'm probably over-reacting but it makes me feel better knowing that he is going to be safe and loved and protected. If something truly significant comes along and changes my mind then so be it. But for now I know what's best for my son.
Somewhere along this rant/conversation that Amber LaQuita and I had Carson fell asleep on my shoulder all bundled up in his coat. I carried him to the car and drove around with him for an hour while we waited for Baylee to get off the bus. After his nap he seemed to be back on his game. I hope that he was just tired and is not getting sick. Time will tell. Today was a snow day again because we got more snow last night so it was just another lazy day with the kids staying in their pajamas. But right now I'm off to bed. Back up in 6 hours to get Baylee ready for school. No more snow until the weekend (I hope). I'm already sick of winter and it's not even winter yet ;)
XX
Sunday, December 8, 2013
Ways to Cope with SPD
One thing I haven't really touched on yet is how we try to handle Carson's sensory processing disorder. I have to admit, in the beginning anything that we could've done wrong, we did. For one, we didn't know in the beginning exactly what we were dealing with so we took him to roller derby games with loud music and announcers, little kids' birthday parties, crowded malls and anything else you can possibly think of that would be torture. But again, we didn't KNOW. He would cry and squirm and fuss and we just thought it was a phase that he was going through or that maybe it was just too loud with his ears being so sensitive.
It wasn't until we were having one of our bi-weekly sessions with one of our Early Intervention Specialists in our home and she saw him go to the corner and place his head down on the floor that we even heard the term "SPD". She described it as when Carson is overstimulated or overwhelmed he tries to 'center' himself with deep pressure. If we are home he has the option to just go to him room and chill out. For this reason if we are having family get-togethers with my dad's side of the family they always come to our house. This makes him more comfortable.
We were shown ways to center Carson for him if we are in a situation where he is unable to do it himself. One way is to lace our fingers together and place our palms down on the top of his head. We gently apply pressure down onto the top of his head. With this you have to be careful not to squish his brain out his ears but we have had great success with this. We can also use this same concept on other parts of his body; we were shown how to apply pressure to his hips elbows and shoulders as well as his hands and feet. If we are having a rough night getting him to settle down this is one approach that I have to bring him back down. Sometimes it may take a little while for it to work, but it does.
Last year I was given this neat little thing:
Lately Carson has also been very oral sensory-seeking. Anything and everything ends up in his mouth. I found these on an autism support web-site and they are wonderful.
These are called Chewelry. They come in a few different varieties. You can get just a medallion on a break-away cord or bracelets or even cuffs that you can wear on your wrists to chew on. He can stretch them and chew them and everything in between. The one downside is when it's in his mouth and he stretches it too far it can come flying out of his mouth and spit flings everywhere.
Until today I thought I was a genius when it came to clothing. Since he loves to be naked and can easily get out his regular clothing I started buying footie pajamas with the little snap that goes over the zipper. I cut the feet off of them since that is a major issue for him. But now he will sit and chew on the zipper until he pops it open just a bit and then pull it apart until he can sneak out of them. Then off goes the diaper and he's naked running through the house again. A little too cold for that now seeing as we have about 8 inches of snow on the ground outside. Even with the chewing it still took him a few hours to escape so I was just happy to keep him covered that long. Today, however, he finally figured out how to make a zipper work. I stood in disbelief as he used his cute little fingers to try and try again to grasp the little tag. Once he had it he had to figure out that you had to hold the other side for leverage. He put his iPad between his knees and tried again. This time success! He unzipped it half way down and then did his little dance to get out of them. I didn't know whether to laugh or cry. It's great because he has now learned to so something new but at the same time I'm now completely out of ideas unless I try to find some old-fashioned long johns that have the hatch on the bottom. Oh well. I'll figure out something :)
XX
It wasn't until we were having one of our bi-weekly sessions with one of our Early Intervention Specialists in our home and she saw him go to the corner and place his head down on the floor that we even heard the term "SPD". She described it as when Carson is overstimulated or overwhelmed he tries to 'center' himself with deep pressure. If we are home he has the option to just go to him room and chill out. For this reason if we are having family get-togethers with my dad's side of the family they always come to our house. This makes him more comfortable.
We were shown ways to center Carson for him if we are in a situation where he is unable to do it himself. One way is to lace our fingers together and place our palms down on the top of his head. We gently apply pressure down onto the top of his head. With this you have to be careful not to squish his brain out his ears but we have had great success with this. We can also use this same concept on other parts of his body; we were shown how to apply pressure to his hips elbows and shoulders as well as his hands and feet. If we are having a rough night getting him to settle down this is one approach that I have to bring him back down. Sometimes it may take a little while for it to work, but it does.
Last year I was given this neat little thing:
This is a therapy brush and probably one of the greatest little things ever invented. The bristles are very fine and very soft. The idea is to brush firmly in a downward fashion on the arms, legs, back, palms of hands and soles of feet. The two major rules are to NEVER brush on the face or stomach and NEVER let it tickle. I can't really tell you the reasons this little bugger works, but it does. If the deep pressure doesn't work this is always my second choice. Carson has even gotten to a point where he will lay on his back and hold it up in the air with both hands and then rub his feet back and forth across the bristles.
Vibration is another idea that seems to work. I picked up something in the dollar bin at Target last Christmas that is a handheld rocket ship with a Santa Claus inside clear plastic at the top of it. When you press a button on the side it lights up and Santa spins. Carson will press the button and then put the Santa end in his mouth. He also likes a back massager that has 4 ball feet that he has figured out how to turn on himself and lay on his side to get it on his back.
Lately Carson has also been very oral sensory-seeking. Anything and everything ends up in his mouth. I found these on an autism support web-site and they are wonderful.
These are called Chewelry. They come in a few different varieties. You can get just a medallion on a break-away cord or bracelets or even cuffs that you can wear on your wrists to chew on. He can stretch them and chew them and everything in between. The one downside is when it's in his mouth and he stretches it too far it can come flying out of his mouth and spit flings everywhere.
Until today I thought I was a genius when it came to clothing. Since he loves to be naked and can easily get out his regular clothing I started buying footie pajamas with the little snap that goes over the zipper. I cut the feet off of them since that is a major issue for him. But now he will sit and chew on the zipper until he pops it open just a bit and then pull it apart until he can sneak out of them. Then off goes the diaper and he's naked running through the house again. A little too cold for that now seeing as we have about 8 inches of snow on the ground outside. Even with the chewing it still took him a few hours to escape so I was just happy to keep him covered that long. Today, however, he finally figured out how to make a zipper work. I stood in disbelief as he used his cute little fingers to try and try again to grasp the little tag. Once he had it he had to figure out that you had to hold the other side for leverage. He put his iPad between his knees and tried again. This time success! He unzipped it half way down and then did his little dance to get out of them. I didn't know whether to laugh or cry. It's great because he has now learned to so something new but at the same time I'm now completely out of ideas unless I try to find some old-fashioned long johns that have the hatch on the bottom. Oh well. I'll figure out something :)
XX
Thursday, December 5, 2013
School: Day 13
School Monday was great. When we got there and were buzzed into the building the hallways were packed with kids. Carson and I hung back waiting for a chance to get to the office and Patty showed up right on time. Since the hallways were so busy I stood close and watched as Patty began working with Carson with the stairs. I usually hang back and let her work alone but I'm glad I got to see up close just how great he is doing. He is now climbing with ease, although she is always right beside him just in case he were to get tripped up.
After a quick check-in with me he was ready to keep working. Mostly they just played with the rocket. Jen then pulled out a small plastic bag from Lowes. Inside was a master lock and key and a large lag bolt with a washer and a nut attached to it. He wasn't really into the bolt but he liked putting the key in the hole. He doesn't have the hand strength to turn the key though. Pretty inventive ideas. I wonder how many she got off Pinterest lol.
Speech was absolutely amazing. Jen stayed and offered to help LaQuita with Carson. It turned out to be a HUGE help because she put him on a regular round therapy ball and LaQuita sat in front of him with her iPad and they used the app "Categories". They started out with just two pictures at a time. It would show a foot and a ham. It would ask the question, "Which is a part of the body?" Of course he answered ham. This happened several times in a row where he would answer very quickly and get them wrong. LaQuita figured out that he wasn't taking the time to look at each picture, he was just fast to pick one so she changed her approach. Keeping the screen facing her she would ask the question. Then she would turn it to him but keep it out of his reach and ask it again. This gave him time to look and process both the question and the pictures. Only when she was satisfied he was taking his time would she put it close enough for him to touch the correct picture.
Jen would let him celebrate a correct answer by bouncing up and down on the ball a few times. After a few times he was celebrating before he'd even touched the screen because he already knew the answer. At the end he was at 80-90% accuracy! It makes me so happy that these women are working so hard to find different ways to see Carson for who he truly is. He is so smart and that makes me hopeful. But I know that reality can be deceiving sometimes and I know that we still have a long way to go.
XX
This week she used the foam letter mats as an aide to get him to go up and down the steps. She punched out the numbers and put them at the top of the landing and then up the frames at the bottom. She made him work for it and used 1-7. He had to go to the top and pick a number (his OCD wouldn't let him go out of order lol) and then take it down to the bottom and put it back into it's frame.
This is getting him into a good squatting position which they like. When he first started therapy that was one of his goals, to squat and stand back up without holding onto anything for help or even push off of his legs with his arms. I actually forgot about that until just now...
The way down is definitely trickier than the way up. His core strength still isn't where it should be and he still leans forward. She loosely holds onto one hand and places the other onto the railing for support. The idea is for him to place one foot on each step and sometimes he will do that. The more tired he gets the sloppier he gets when it comes to the stairs. By about the 4th or 5th trip he got tired and decided to cheat and take all of the remaining numbers. It was cute but it didn't fly with Patty. She made him put them back and take only one.
I signed in on the way to the classroom. Patty had him carry a couple of the mats down the hallway to the room while she carried the rest. From behind he looked like he was carrying books to class.
It was only Carson and the other little boy in class. They started off as usual with the classroom stuff. They initially brought in a ball for Carson to sit on but it was obvious within a minute that it wasn't going to work. They got down the other ball that he had sat on last week and immediately he calmed down and paid attention. They called it a peanut and that's really what it looks like. When I got home I looked on Amazon for one since it was cyber Monday but even with discounts it was still $50!
They sang the days of the week song and the months song and then it was time for the weather. I have to admit I was surprised when Amber called on Carson to be the weather watcher for the day.
This is Carson and Jen at the window to see what the weather was like outside. I didn't think he was really paying attention but when they took him over to the choices to put on the wall he chose cloudy without hesitation, and it was cloudy. Not a peek of the sun anywhere in the sky. When they dressed the panda Carson wanted to put a tank top on him and then tried to put pants on his head. So much for the idea that he got it last week. Oh well. Maybe he's just the class clown.
LaQuita had "Pete the Cat Saves Christmas" pulled up on YouTube and the boys watched with enthusiasm. Carson just sat in his little yellow chair and absorbed it all. At one point he was leaning back in his chair kissing me on the cheek and then turned and kissed the other little boy in the room on the head. It was cute. I don't even think the little guy noticed. I have never seen him show affection toward anyone that wasn't family or at least close enough to be. Usually he screams when this boy gets too close to him. A moment where his guard was down I suppose?
Patty and Jen had so many new things for Carson this week it was crazy. They first started off jumping off of the wooden platform (in the pic below) onto the numbers that were laid out. They then brought out this neat little thing called a Stomp Rocket. It's just that. It's a foam rocket that you slide over a hollow tube that has a pedal at the end of it. You stomp on the pedal which forces air through the tube and shoots the rocket (not far) into the air. The belly laughs coming out of this kid were great. He was laughing so hard. They would pull his leg up in the air and then help him stomp down. It came to a point where Jen was standing on the stool with him and they would jump off onto the pedal to make it go higher, well that was the idea anyway, most of the time they missed the pedal completely.
For fine motor Jen has gotten pretty resourceful. She used the metal lockers in the classroom to become an easel. She hung pieces of paper low on them by magnetic clips and had Carson write his letters straight up and down. She knelt down behind him and he just relaxed into her lap as he drew, not a care in the world. She also used a laminated sign that was already in the classroom to put clothes pins onto the bottom of it. Of course it had letters on it so after a while they lost him because he had to trace the letters with his fingers.
After a quick check-in with me he was ready to keep working. Mostly they just played with the rocket. Jen then pulled out a small plastic bag from Lowes. Inside was a master lock and key and a large lag bolt with a washer and a nut attached to it. He wasn't really into the bolt but he liked putting the key in the hole. He doesn't have the hand strength to turn the key though. Pretty inventive ideas. I wonder how many she got off Pinterest lol.
Speech was absolutely amazing. Jen stayed and offered to help LaQuita with Carson. It turned out to be a HUGE help because she put him on a regular round therapy ball and LaQuita sat in front of him with her iPad and they used the app "Categories". They started out with just two pictures at a time. It would show a foot and a ham. It would ask the question, "Which is a part of the body?" Of course he answered ham. This happened several times in a row where he would answer very quickly and get them wrong. LaQuita figured out that he wasn't taking the time to look at each picture, he was just fast to pick one so she changed her approach. Keeping the screen facing her she would ask the question. Then she would turn it to him but keep it out of his reach and ask it again. This gave him time to look and process both the question and the pictures. Only when she was satisfied he was taking his time would she put it close enough for him to touch the correct picture.
Jen would let him celebrate a correct answer by bouncing up and down on the ball a few times. After a few times he was celebrating before he'd even touched the screen because he already knew the answer. At the end he was at 80-90% accuracy! It makes me so happy that these women are working so hard to find different ways to see Carson for who he truly is. He is so smart and that makes me hopeful. But I know that reality can be deceiving sometimes and I know that we still have a long way to go.
XX
Sunday, December 1, 2013
Being Thankful
It has been a busy few days around here with Thanksgiving and both Baylee and Mike home too. Tomorrow will be back to the same old routine.
On Thursday we went to my mom's house for Thanksgiving "dinner" even though we ate at noon so that one of my older sisters could go to her in-laws house for actual dinner and still have an appetite. I was smart and took Carson in his pajamas. It makes things a lot easier since he likes to get naked if he can get out of his clothes and my mom's house is always cold so I figured I'd kill two birds. We put him in onesie pajamas that zip up the front and then snap across the zipper at the top. These are becoming harder and harder to find since he needs a 5T. I cut the feet out of them since his feet are too big and they usually make him very unsteady even if they do fit his feet. I am lucky that he doesn't know how to work a zipper yet because if he did I would be completely out of options for keeping him dressed.
He did really well with everyone, especially since he has been terrified of one of my brother-in-laws for quite a while. The biggest thing was I finally got to see how much Coke he was consuming at my mom's house during the day when I was at work. Let me tell you, by the time we left I was pissed. I would tell her no more pop and then I'd look over and see her filling up another cup for him! At least now I know why the kid never went to bed at a decent time for me. He was too hopped up on caffeine to settle down.
While we were there my mom and my sisters planned their Black Friday shopping trip. I don't go. It's too much of a hassle for me. I'm the type of person who likes to hang at home rather than go mess with hour-long lines to get a shirt for 4 bucks when I don't need it in the first place. Don't get me wrong, I get the people who probably wouldn't be able to afford Christmas otherwise but let's be honest, 95% of the idiots that are out fighting to get to the slowly opening doors for the marked down TV or whatever are getting it for THEMSELVES. Anyway, I went when Baylee was a baby and had her in a stroller and some idiot woman bashed her in the head with all the bags she had on her arms and never stopped to see if she was okay or apologize or anything. That was it for me. I'll do my shopping online, thank you.
Ok, off my soapbox...
On Friday Carson was listening PBS shows on his iPad. There was an Elmo show playing that he kept saying "eeeeeeeeeee" to so I thought I would be funny and said, "ffffffffffffffff". He looked at me like I had two heads. He then said, "eeeeeeeeeeee" again but this time signed eat at the same time!! EAT!! He SAID eat!! Then at lunch I was making him some hot dogs in the microwave and when it beeped he said, "ready". I was stunned! He says things so monotone as if he were completely deaf but I know that he at least hears some things. I paid attention to the microwave the next time I was making something and when it beeps 'FOOD IS READY" scrolls across the screen!! The little shit was reading! So happy. I can't wait to tell LaQuita tomorrow.
He is now signing "mom" more frequently and even used it to tell Mike that I was home from the store. He signed it and then waived a hand towards our door into the house from the garage. Baylee asked if we could teach him how to sign sister (gently brushing your thumb closed fist, thumb sticking out, from your temple down your cheek). I thought it was a great idea. It only took us showing him two times and he could do it back to us. One funny thing we have noticed that he is doing is now everything is eat. He wants ice, he says eat. He wants a drink, he says eat. It's cute, like when an infant calls everyone mommy or daddy, it doesn't matter who it is.
My parents are divorced and have been since I was really young. Today we drove about an hour west of our house to visit my dad, step-mom and little (not really) brother and sister. He is 26 and she is 19. On the way out there we were playing a game in the car picking an animal and having the others in the car take turns asking questions to narrow it down until we could figure it out. Baylee went first, then me and then Mike. Once we had guessed his Baylee said it was her turn again. I said no, it's Carson's turn. "But Mom!" she said in a huff, "he can't say yes or no so how am I going to know the answer? All he says is eat!" It broke my heart. I wonder if he just wishes that he could talk, or that we could understand him. Here he was in the car listening to us chatter on about 'does it eat meat? can it walk on two legs?' and maybe he did want a turn guessing. I have no idea.
We had an interesting conversation today at my dad's house while they were watching Carson with his iPad. My brother brought up what it must've been like 50 years ago without the technology we have today. How so many people with disabilities were put away in homes to rot because society wouldn't accept them. Had they known what I know today things could've been so much better. I can't imagine what it feels like to be trapped inside your own body, in your own mind. It puts things into perspective and I have to admit tonight that I am feeling a little down. Carson has had some great accomplishments this week and I'm thankful for that.
Something that has really stuck with me is probably going to sound really, really stupid. We saw last night that Paul Walker was killed in a car wreck. It really got me thinking and especially now that there are more details coming out about it. But just THINK about it. A guy who makes a living portraying a guy who races cars and does all these crazy stunts dies just outside his company in a car with a race car driver??? It's so ironic. The saddest part about this is these guys have young kids. It scares me to death to think what would happen to my kids if I died tomorrow. I know deep down that Baylee would get over it, or at least understand it enough to accept it. Carson on the other hand has no clue about death or what the word even means. He would just think that I went to the store and never came back. That cuts me to the core.
On the way home tonight we missed a fatal wreck by mere minutes. I'm not kidding. Baylee was complaining that she was hungry and she wanted Arby's which was at the next exit and since I'm not working anymore I told her that we would just eat when we got home. We passed the exit and I continued on for about another 20 minutes to our exit. When we were getting off the highway Mike got an alert on his phone that the highway was closed because of a multi-car accident and that Air Care and the coroner were both called to the scene. We had just driven through the area where the crash had happened. If we would've been delayed 5 minutes or so it would've been us or damn close. Had we gotten off the highway and picked up food, it may have been just the right amount of time to put us there right then. It's so crazy when you think about it like that.
So tonight I go to bed thankful for my family and the things that we have. Tomorrow is another day and we have school again (Yay!! Preschool!!! LOL)
XX
On Thursday we went to my mom's house for Thanksgiving "dinner" even though we ate at noon so that one of my older sisters could go to her in-laws house for actual dinner and still have an appetite. I was smart and took Carson in his pajamas. It makes things a lot easier since he likes to get naked if he can get out of his clothes and my mom's house is always cold so I figured I'd kill two birds. We put him in onesie pajamas that zip up the front and then snap across the zipper at the top. These are becoming harder and harder to find since he needs a 5T. I cut the feet out of them since his feet are too big and they usually make him very unsteady even if they do fit his feet. I am lucky that he doesn't know how to work a zipper yet because if he did I would be completely out of options for keeping him dressed.
He did really well with everyone, especially since he has been terrified of one of my brother-in-laws for quite a while. The biggest thing was I finally got to see how much Coke he was consuming at my mom's house during the day when I was at work. Let me tell you, by the time we left I was pissed. I would tell her no more pop and then I'd look over and see her filling up another cup for him! At least now I know why the kid never went to bed at a decent time for me. He was too hopped up on caffeine to settle down.
While we were there my mom and my sisters planned their Black Friday shopping trip. I don't go. It's too much of a hassle for me. I'm the type of person who likes to hang at home rather than go mess with hour-long lines to get a shirt for 4 bucks when I don't need it in the first place. Don't get me wrong, I get the people who probably wouldn't be able to afford Christmas otherwise but let's be honest, 95% of the idiots that are out fighting to get to the slowly opening doors for the marked down TV or whatever are getting it for THEMSELVES. Anyway, I went when Baylee was a baby and had her in a stroller and some idiot woman bashed her in the head with all the bags she had on her arms and never stopped to see if she was okay or apologize or anything. That was it for me. I'll do my shopping online, thank you.
Ok, off my soapbox...
On Friday Carson was listening PBS shows on his iPad. There was an Elmo show playing that he kept saying "eeeeeeeeeee" to so I thought I would be funny and said, "ffffffffffffffff". He looked at me like I had two heads. He then said, "eeeeeeeeeeee" again but this time signed eat at the same time!! EAT!! He SAID eat!! Then at lunch I was making him some hot dogs in the microwave and when it beeped he said, "ready". I was stunned! He says things so monotone as if he were completely deaf but I know that he at least hears some things. I paid attention to the microwave the next time I was making something and when it beeps 'FOOD IS READY" scrolls across the screen!! The little shit was reading! So happy. I can't wait to tell LaQuita tomorrow.
He is now signing "mom" more frequently and even used it to tell Mike that I was home from the store. He signed it and then waived a hand towards our door into the house from the garage. Baylee asked if we could teach him how to sign sister (gently brushing your thumb closed fist, thumb sticking out, from your temple down your cheek). I thought it was a great idea. It only took us showing him two times and he could do it back to us. One funny thing we have noticed that he is doing is now everything is eat. He wants ice, he says eat. He wants a drink, he says eat. It's cute, like when an infant calls everyone mommy or daddy, it doesn't matter who it is.
My parents are divorced and have been since I was really young. Today we drove about an hour west of our house to visit my dad, step-mom and little (not really) brother and sister. He is 26 and she is 19. On the way out there we were playing a game in the car picking an animal and having the others in the car take turns asking questions to narrow it down until we could figure it out. Baylee went first, then me and then Mike. Once we had guessed his Baylee said it was her turn again. I said no, it's Carson's turn. "But Mom!" she said in a huff, "he can't say yes or no so how am I going to know the answer? All he says is eat!" It broke my heart. I wonder if he just wishes that he could talk, or that we could understand him. Here he was in the car listening to us chatter on about 'does it eat meat? can it walk on two legs?' and maybe he did want a turn guessing. I have no idea.
We had an interesting conversation today at my dad's house while they were watching Carson with his iPad. My brother brought up what it must've been like 50 years ago without the technology we have today. How so many people with disabilities were put away in homes to rot because society wouldn't accept them. Had they known what I know today things could've been so much better. I can't imagine what it feels like to be trapped inside your own body, in your own mind. It puts things into perspective and I have to admit tonight that I am feeling a little down. Carson has had some great accomplishments this week and I'm thankful for that.
Something that has really stuck with me is probably going to sound really, really stupid. We saw last night that Paul Walker was killed in a car wreck. It really got me thinking and especially now that there are more details coming out about it. But just THINK about it. A guy who makes a living portraying a guy who races cars and does all these crazy stunts dies just outside his company in a car with a race car driver??? It's so ironic. The saddest part about this is these guys have young kids. It scares me to death to think what would happen to my kids if I died tomorrow. I know deep down that Baylee would get over it, or at least understand it enough to accept it. Carson on the other hand has no clue about death or what the word even means. He would just think that I went to the store and never came back. That cuts me to the core.
On the way home tonight we missed a fatal wreck by mere minutes. I'm not kidding. Baylee was complaining that she was hungry and she wanted Arby's which was at the next exit and since I'm not working anymore I told her that we would just eat when we got home. We passed the exit and I continued on for about another 20 minutes to our exit. When we were getting off the highway Mike got an alert on his phone that the highway was closed because of a multi-car accident and that Air Care and the coroner were both called to the scene. We had just driven through the area where the crash had happened. If we would've been delayed 5 minutes or so it would've been us or damn close. Had we gotten off the highway and picked up food, it may have been just the right amount of time to put us there right then. It's so crazy when you think about it like that.
So tonight I go to bed thankful for my family and the things that we have. Tomorrow is another day and we have school again (Yay!! Preschool!!! LOL)
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