Yesterday was hard. Physically and mentally. For starters, Baylee had her braces adjusted Wednesday night and her mouth has been killing her since. She didn't even want to go to school yesterday (which isn't like her at all) and then Carson had a dentist appointment for a cleaning and eval. I've known about the dentist appointment for 6 months so you would think that I would've been smarter about it and asked Mike to take off work and come with me. Dentist appointments are the WORST appointments when it comes to Carson. His SPD makes his mouth hypersensitive and it's not something that he tolerates well. Hell even just brushing his teeth is a task.
So I show up to his appointment and as I'm in the parking lot getting his stuff together my phone rings and it's the school telling me that Baylee is in the office and wants to go home. It's 10 am. They let me talk to her and I convinced her to just hang in there and I would bring her some Tylenol when Carson was finished. I'd already given her ibuprofen before she left the house. She agreed and I went inside.
Now I have to say that Carson's hygienist Rebecca is a SAINT when it comes to him. We have been taking him since he was about 3 and she has done all but 1 of his cleanings. Last time he screamed but really didn't fight too much. This time was insane. It took 3 of us just to hold him in the chair. He was on his back, reclined, and I was literally lying on top of him holding his wrists so he couldn't claw anyone. Two other girls had a leg each and poor Rebecca was trying to hold his head still and clean his teeth at the same time. None of us could hear the other over his screaming. And I'm not talking waaaaa screams. I'm talking AHHHH AHHHH AHHHHH terrified someone's trying to kill me screams. I swear people heard him a block away.
I wish I could say that with all of us it was easy. It wasn't. He was twisting and bucking and trying to get off that chair any way possible. His hand would get free and he would scratch my arm or my face. A couple times we had to re-position him back up to the top of the chair because he had worked us all down to the bottom.
Once she had polished his teeth we gave him a break before the dentist came in to see him. Usually we have to wait ten or so minutes while he is in with another patient. Poor Carson is just sobbing in my arms. He's all red and hot. We're all sweating and breathing hard. Everyone is making sure the other is okay since he was kicking and straining.
When the dentist came in Carson about climbed me to the ceiling. I got him back into the chair and we had to do it all over again. He counted Carson's teeth (out loud) and was trying to soothe him the best he could. Rebecca painted his teeth and then they were finished. I held Carson in my lap for just a few minutes before we left to go schedule. He likes leaving because they let him pick out 2 prizes and a sticker. He ALWAYS goes for the little plastic dinosaurs that he can chew on.
So we left, frazzled, with out next appointment in hand. Next time without a doubt Mike has to come with me. It's really hard to accept that I am just not big enough or strong enough to handle him on my own in situations like that anymore. He isn't even 6 yet. What happens when he's 12? What happens at home when he gets to a point where he doesn't want to listen to me anymore? Or I need to go to the grocery store and he's too big to fit in the cart (which will be in the next year for sure) and won't stay with me? Thinking about all the what if's makes my head hurt and my heart ache.
So I woke up this morning so sore, as if I'd just had the hardest work-out of my life sore, and depressed. Some days it's really hard to see the bright side of things. Then he comes to me with his iPad on Proloquo2go and writes "hungry. pizza rolls." I said sorry bud we don't have any. He writes "go." Go where? I asked. "Food. Pharmacy." (KROGER LOL) Then I'm reminded how smart this little booger is and why I love him so much.
XX
Saturday, September 20, 2014
Saturday, September 13, 2014
Home School
This past month has been so busy. School officially started for Carson on August 1 since his paperwork came to us late (but we unofficially started June 1). I'm doing many things with him when it comes to his education but the major part is coming from his iPad. He has a TON of apps which are all educational. He doesn't have one game on there that is just for fun. It makes me sound like a total stickler but trust me, it's how he likes it. I purchased a year's subscription for an app called Homer. It is an app that not only teaches letters and sounds but also has a mail system where you can send and receive virtual postcards from family members. He is getting really good at taking pictures to send. I like it because I can log on and see how much progress he has made. The only problem so far is that it allows up to 5 profiles and Carson has figured out how to make them. Right now he is playing under the name 'umbrella'.
I pretty much let him lead the way when it comes to what he is learning but I am also doing work-book pages with him to put in his portfolio to show the board at the end of the school year. It's really fun working with him. I have to admit that I am learning probably just as much as he is. Did you know that the first school bus was used in London, UK in 1827? It was horse-drawn and could hold up to 25 students.
He has watched tadpoles grow into tree frogs and has been learning about all sorts of musical instruments. His favorite today was a harmonica (which interestingly enough was one of the first words he ever spelled... when he was 2).
I am trying to take as many pictures as I can so show the things that he is working on since he doesn't really do that much actually ON paper. It is either on his iPad or on his white board. Some days it's like watching a scene from A Beautiful Mind or Limitless and the end result is this:
Carson had new tubes put in his ears on August 28. We go for a booth hearing test next week. Hopefully he is hearing better. We have noticed that he isn't writing things the correct way. He writes POT instead of POP and today he was listening to an Elmo song and during one part they say clap clap clap and he wrote nap nap nap so we know for sure he either isn't hearing it right or isn't processing it correctly.
Oh well. It's almost 2 am. I guess I should be off to bed. 7 am comes early.
XX
I pretty much let him lead the way when it comes to what he is learning but I am also doing work-book pages with him to put in his portfolio to show the board at the end of the school year. It's really fun working with him. I have to admit that I am learning probably just as much as he is. Did you know that the first school bus was used in London, UK in 1827? It was horse-drawn and could hold up to 25 students.
He has watched tadpoles grow into tree frogs and has been learning about all sorts of musical instruments. His favorite today was a harmonica (which interestingly enough was one of the first words he ever spelled... when he was 2).
I am trying to take as many pictures as I can so show the things that he is working on since he doesn't really do that much actually ON paper. It is either on his iPad or on his white board. Some days it's like watching a scene from A Beautiful Mind or Limitless and the end result is this:
We go in October for his annual appointment with his pediatrician. I am going to find out then what I need to do about therapies since we aren't doing any from school anymore. I am incorporating as much as I can in our day but I don't know if it is enough.Carson had new tubes put in his ears on August 28. We go for a booth hearing test next week. Hopefully he is hearing better. We have noticed that he isn't writing things the correct way. He writes POT instead of POP and today he was listening to an Elmo song and during one part they say clap clap clap and he wrote nap nap nap so we know for sure he either isn't hearing it right or isn't processing it correctly.
Oh well. It's almost 2 am. I guess I should be off to bed. 7 am comes early.
XX
Saturday, August 2, 2014
Words
Today Carson said I love you. He was lying on the floor in my bedroom and I was playing with his feet. I looked him in the eyes and said I love you. Without blinking he said, "I love you." It wasn't perfect but I understood the cadence and the letter sounds. Before I could even tell anyone Mike peeked his head around the corner from shaving in the bathroom and said, "Did he just say 'I love you'?" It was such a good feeling. I gave up on Carson talking a long time ago. A doctor in Seattle did a gene study on our kiddos and found that those who were missing a certain gene sequence never spoke or gained and lost words frequently. Carson is missing that sequence. He has said words before but then lost them. He used to say mama and dada. Sometimes it's almost like his little brain forgets that he can't speak and out of the blue he'll say something. Right now the only two words that he has kept are eat and yeah. Eat is more like EEEEEEEEEE but he signs eat at the same time so I know that's what he means. Yeah is drawn out and really cute, YEEEEAAAAAAAHHHHH.
I asked Carson this morning when he woke up if he could talk in his dreams. Yeeeaaaaahhhh he says to me. I swear it broke my heart. I can't imagine how frustrating it must be for him to have so many words jumbled up inside and only be able to write one or two words at a time. Even with Proloquo2go - a speaking app on his iPad- there are so many screens and options that it takes a while just to get out everything that he is thinking of. He usually just gives up and starts typing the letters out.
My mom got Carson an easel for Easter that has a chalk board on one side and a dry erase white board on the other. In the beginning we were letting him use the chalk side of the board and breaking the chalk into tiny pieces so that he would have to hold it correctly with his thumb and pointer finger they way we were taught in school last year. Unfortunately the chalk was very messy and left a dusty layer all over my living room furniture, carpet and even the walls. On top of that Carson's finger began to have a wound on the pad where his fingerprint is. I think it was a combination of the chalk being so drying to the skin plus he would use his finger to wipe off what he had written on the chalk board instead of the eraser we got him. Since he is diabetic and wounds heal very slowly and can become necrotic I had to take the chalk away and buy him the markers instead.
The things that he writes now are incredible. The other day he wrote Shop Vac then erased it and wrote NOT vacuum. It was so funny. He has an obsession with vacuums like you wouldn't believe. If we are in Target, we have to go by the vacuums and you can't just walk down the aisle. You have to go slow, let him read the brand of the vacuum and explain if it is for pet hair etc. The other side of that is that he is terrified of carpet cleaners. We have one in our house and if you so much as open the door to the closet it is in he will hide from you until he is sure that you aren't hiding it somewhere just to scare him with it. I think it has a lot to do with the pitch of the noise that comes from it since he can only hear to a certain decibel level. A carpet cleaner (or steam cleaner as we refer to it) is a stamooller to Carson. For the longest time he would write stamooller and I had absolutely no clue what he was talking about. Then I saw him on his ABC go app and it showed a steam roller so I announced to everyone with great enthusiasm that a stamooller is a steam roller!!! Boy was I wrong lol. Last week he wrote this: stamooller Bissel. Our steam cleaner is a Bissel. I got served HA! The new one he keeps writing that has me stumped is AIRFACE. It's not Facebook, Air Force or fire place. I have begged him to show me what AIRFACE is but so far he likes to keep me guessing.
A HUGE part of the progress we have made with Carson and his vocabulary has 100% come from his iPad and the apps that are available. I had to buy him a new one a few weeks ago because he cracked the screen on his and Best Buy will send it off and repair it and send it back to your house up to 10 days later. (In reality it took 2 days but I couldn't take the chance). The gentleman who helped me, Andy, had special needs. I can't say for sure what his specific diagnosis was but I would venture on something similar to cerebral palsy because he was very sharp mentally, it was his body that wasn't living up to him. He asked me why I specifically wanted an iPad and I explained that my son has special needs and all the apps I have are all Apple apps and so on. We started talking about how 10-15 years ago he had a friend who had a 'speaking machine' that had been built by Children's Hospital and the thing was enormous and was very VERY expensive. There wasn't anything close to what we can have access to today. Don't get me wrong, $300 for an iPad mini was a huge chunk of change out of our pockets, especially considering that we are living on one income now and Mike is in construction so he doesn't make that much money. But it's worth it if it means that Carson can learn new things each day and be able to express his wants and needs to me or to anyone for that matter.
I asked Carson this morning when he woke up if he could talk in his dreams. Yeeeaaaaahhhh he says to me. I swear it broke my heart. I can't imagine how frustrating it must be for him to have so many words jumbled up inside and only be able to write one or two words at a time. Even with Proloquo2go - a speaking app on his iPad- there are so many screens and options that it takes a while just to get out everything that he is thinking of. He usually just gives up and starts typing the letters out.
My mom got Carson an easel for Easter that has a chalk board on one side and a dry erase white board on the other. In the beginning we were letting him use the chalk side of the board and breaking the chalk into tiny pieces so that he would have to hold it correctly with his thumb and pointer finger they way we were taught in school last year. Unfortunately the chalk was very messy and left a dusty layer all over my living room furniture, carpet and even the walls. On top of that Carson's finger began to have a wound on the pad where his fingerprint is. I think it was a combination of the chalk being so drying to the skin plus he would use his finger to wipe off what he had written on the chalk board instead of the eraser we got him. Since he is diabetic and wounds heal very slowly and can become necrotic I had to take the chalk away and buy him the markers instead.
The things that he writes now are incredible. The other day he wrote Shop Vac then erased it and wrote NOT vacuum. It was so funny. He has an obsession with vacuums like you wouldn't believe. If we are in Target, we have to go by the vacuums and you can't just walk down the aisle. You have to go slow, let him read the brand of the vacuum and explain if it is for pet hair etc. The other side of that is that he is terrified of carpet cleaners. We have one in our house and if you so much as open the door to the closet it is in he will hide from you until he is sure that you aren't hiding it somewhere just to scare him with it. I think it has a lot to do with the pitch of the noise that comes from it since he can only hear to a certain decibel level. A carpet cleaner (or steam cleaner as we refer to it) is a stamooller to Carson. For the longest time he would write stamooller and I had absolutely no clue what he was talking about. Then I saw him on his ABC go app and it showed a steam roller so I announced to everyone with great enthusiasm that a stamooller is a steam roller!!! Boy was I wrong lol. Last week he wrote this: stamooller Bissel. Our steam cleaner is a Bissel. I got served HA! The new one he keeps writing that has me stumped is AIRFACE. It's not Facebook, Air Force or fire place. I have begged him to show me what AIRFACE is but so far he likes to keep me guessing.
A HUGE part of the progress we have made with Carson and his vocabulary has 100% come from his iPad and the apps that are available. I had to buy him a new one a few weeks ago because he cracked the screen on his and Best Buy will send it off and repair it and send it back to your house up to 10 days later. (In reality it took 2 days but I couldn't take the chance). The gentleman who helped me, Andy, had special needs. I can't say for sure what his specific diagnosis was but I would venture on something similar to cerebral palsy because he was very sharp mentally, it was his body that wasn't living up to him. He asked me why I specifically wanted an iPad and I explained that my son has special needs and all the apps I have are all Apple apps and so on. We started talking about how 10-15 years ago he had a friend who had a 'speaking machine' that had been built by Children's Hospital and the thing was enormous and was very VERY expensive. There wasn't anything close to what we can have access to today. Don't get me wrong, $300 for an iPad mini was a huge chunk of change out of our pockets, especially considering that we are living on one income now and Mike is in construction so he doesn't make that much money. But it's worth it if it means that Carson can learn new things each day and be able to express his wants and needs to me or to anyone for that matter.
Friday, August 1, 2014
Insomnia
One of my unfortunate side effects to Carson's diabetes has to be my insomnia. I figured out very early on that if I had to check his blood sugar, say, 2 hours after he went to bed and I went to bed to sleep for those 2 hours I would either not hear my alarm or turn it off in my sleep. It didn't matter if it was right next to my head or across the room. So I went from trying to get some sleep here and there to sometimes having to stay up until 1 or 2 in the morning. The bad part about that is that Miss B is typically an early riser. Up until very recently she was up at 7 am on the nose every day well into July. So I have been looking at roughly 5 hours of sleep a night. Then when it's time for Carson to go to bed I'm bone tired but again have to stay up to check his blood sugar but when I CAN go to sleep I've missed that window and I have to wait to be tired again. It's a never-ending battle.
Then there are nights like tonight where I don't have to check him because his last insulin was administered at 7:30 so he was checked again at 10:30 and he was in the range where I don't have to give him more insulin for a correction so I'm up right now at 12:20 am for no reason other than I can't sleep. I have been making the most of my quiet time when everyone else is in bed by working on my things for craft shows that start up here in about a month so it's not completely wasted time...it's just tired time.
Something else I don't think I've mentioned is the fact that I no longer sleep with Mike in our bed. I haven't since about January. For one, the bed is too comfy ( a sleep number bed) and again that's when I don't hear my alarm going off. Secondly, I was literally pushed out of bed. Our 160 lb Great Dane has now become the proud occupant to my side of the bed. I simply got tired of fighting for space. I probably shouldn't have given up so easily but with all the other shit I have to deal with on a daily basis fighting for a bed was the last thing I wanted to do.
My mom has repeatedly told me that I should make her get down and that's that. Easier said than done. She's smart enough to wait until you're good and asleep and then she'll slither in. You don't even feel her. Then you're waking up in the morning with your knees in your chin curled up into a ball because you just automatically move in your sleep to accommodate the other beings in your bed, dogs or otherwise. (If you're a mom you'll understand that 100%). So then shut the door she tells me. That can't be done. Carson will wake up in the middle of the night and come find me. Happens every night. He would seriously walk right into the door so that's a no-go. So, I gave up.
I now spend my nights with my little C-Man. I got him a full sized bed a while ago and he doesn't seem to mind to share. Aside from the comfort level I don't even miss my bed. I think the next step will be to get a pull-out bed and sleep in the living room because as Carson gets bigger and he needs the bed space for himself. Our dog is turning 2 so potentially she can live for another 10-12 years so who knows how long this will last. I keep joking with Mike that I'm going to turn my craft room in the basement into my bedroom. The sad thing is deep down I don't think I'm joking. I've even looked at paint colors and thought about furniture placement. Maybe that's just me dreaming of a little place where I can go to just unwind since it's been so long since I've had any time to myself. Now that I literally have no one to watch both kids for me there's been little time for me. Mike has watched the kids while I've gone to the grocery store but that's hardly a vacation.
Oh well. Off to bed to see if maybe I can fall asleep. Tomorrow is Saturday and Mike is off work so maybe I'll get lucky and be able to sleep until 8. Fingers crossed.
XX
Then there are nights like tonight where I don't have to check him because his last insulin was administered at 7:30 so he was checked again at 10:30 and he was in the range where I don't have to give him more insulin for a correction so I'm up right now at 12:20 am for no reason other than I can't sleep. I have been making the most of my quiet time when everyone else is in bed by working on my things for craft shows that start up here in about a month so it's not completely wasted time...it's just tired time.
Something else I don't think I've mentioned is the fact that I no longer sleep with Mike in our bed. I haven't since about January. For one, the bed is too comfy ( a sleep number bed) and again that's when I don't hear my alarm going off. Secondly, I was literally pushed out of bed. Our 160 lb Great Dane has now become the proud occupant to my side of the bed. I simply got tired of fighting for space. I probably shouldn't have given up so easily but with all the other shit I have to deal with on a daily basis fighting for a bed was the last thing I wanted to do.
My mom has repeatedly told me that I should make her get down and that's that. Easier said than done. She's smart enough to wait until you're good and asleep and then she'll slither in. You don't even feel her. Then you're waking up in the morning with your knees in your chin curled up into a ball because you just automatically move in your sleep to accommodate the other beings in your bed, dogs or otherwise. (If you're a mom you'll understand that 100%). So then shut the door she tells me. That can't be done. Carson will wake up in the middle of the night and come find me. Happens every night. He would seriously walk right into the door so that's a no-go. So, I gave up.
I now spend my nights with my little C-Man. I got him a full sized bed a while ago and he doesn't seem to mind to share. Aside from the comfort level I don't even miss my bed. I think the next step will be to get a pull-out bed and sleep in the living room because as Carson gets bigger and he needs the bed space for himself. Our dog is turning 2 so potentially she can live for another 10-12 years so who knows how long this will last. I keep joking with Mike that I'm going to turn my craft room in the basement into my bedroom. The sad thing is deep down I don't think I'm joking. I've even looked at paint colors and thought about furniture placement. Maybe that's just me dreaming of a little place where I can go to just unwind since it's been so long since I've had any time to myself. Now that I literally have no one to watch both kids for me there's been little time for me. Mike has watched the kids while I've gone to the grocery store but that's hardly a vacation.
Oh well. Off to bed to see if maybe I can fall asleep. Tomorrow is Saturday and Mike is off work so maybe I'll get lucky and be able to sleep until 8. Fingers crossed.
XX
Thursday, July 31, 2014
Balance
One of the hardest things with having more than one child when one of them has special needs is trying to find a balance between them. There have been so many things that Baylee has had to sacrifice because of her brother. It may be something simple like going for a walk or bike ride, to going to the park, a party, an amusement park etc. I don't necessarily think she resents him for preventing us from going and doing all the time but I know that she is a 9-year-old little girl who just wants to have fun, especially since this is her first 'real' summer at home since I am not working anymore and she doesn't have to go to a babysitter early in the morning. It actually took her a while just to learn how to sleep in.
This year I decided to make a summer bucket list for us to complete. 50 items. Some of them were simple like camp in the back yard (for her and her dad), see a rainbow (finally completed 2 days ago!) and build a fort. Some are pay-it-forward like donating to our local Ronald McDonald House and to Cincinnati Children's Hospital Medical Center's Child Life department because they have done so much to help Carson. And lastly, completely indulgent like a DQ Blizzard, soft-serve ice cream, making Icees and baking bread. Most of these are free or as close to free as I could get. As of today we have completed 38 items. Many of the things on the list are things that really only 3 of us can appreciate but we always try to have Carson with us when we do them so we are doing them as a family. I can tell you it makes me so happy to see Baylee happy and doing fun things instead of just sitting around the house on her iPad all day.
Most of this summer has been much colder than normal. Monday of this week the high was about 68 I went to the grocery store in jeans! It's the end of July in Ohio! That's insane. Usually by now it's 105, we are sweating our asses off and just begging Mother Nature for a breeze. That has hampered some of our bucket list items such as having a water fight, swimming at night and going to a water park. Maybe before school is back in we will be able to warm up enough for maybe even one of these things. If not, I may take matters into my own hands and white out those on the list and add new things...
Tomorrow is Carson's first day of home-school Kindergarten. He'll probably be studying astrophysics lol.
XX
Summer Bucket List:
1. Camp in the back yard
2. Go to King's Island
3. Go to The Cincinnati Museum Center
4. Make tie-dyed clothing
5. Make home-made Icees
6. Go to the Newport Aquarium
7. Go to the movies
8. Make rock candy
9. Go to a farmer's market
10. Watch fireworks
11. Go to the Cincinnati Zoo
12. Play at a playground
13. Go geocaching
14. Have a picnic
15. Go for a bike ride
16. Make homemade pretzels
17. Go to a waterpark
18. Go swimming
19. Go swimming at night
20. Go to the mall
21. Disney movie day
22. Play in the rain
23. Make a pet rock
24. Make a photo booth picture
25. Go to Jungle Jim's
26. Go to Recreations Outlet
27. Play putt-putt
28 Go to Kings Island at night
29. Make jewelry
30. Watch tadpoles grow into frogs
31. Summer reading program at the library
32. Feed ducks
33. Plant a tree
34. See farm animals
35. Go to Ikea
36. Catch lightning bugs
37. Donate to Ronald McDonald House
38. Donate to CCHMC child life
39. Have soft serve ice cream
40. Build a fort
41. Have a water fight
42. Have a UDF malt
43. Barnes and Noble summer reading club
44. See a rainbow
45. Pet a turtle
46. Have a Dairy Queen Blizzard
47. Milkshake from Rally's
48. Make a clay whistle at the library
49. Have dinner on the deck
50. Have a baking day
This year I decided to make a summer bucket list for us to complete. 50 items. Some of them were simple like camp in the back yard (for her and her dad), see a rainbow (finally completed 2 days ago!) and build a fort. Some are pay-it-forward like donating to our local Ronald McDonald House and to Cincinnati Children's Hospital Medical Center's Child Life department because they have done so much to help Carson. And lastly, completely indulgent like a DQ Blizzard, soft-serve ice cream, making Icees and baking bread. Most of these are free or as close to free as I could get. As of today we have completed 38 items. Many of the things on the list are things that really only 3 of us can appreciate but we always try to have Carson with us when we do them so we are doing them as a family. I can tell you it makes me so happy to see Baylee happy and doing fun things instead of just sitting around the house on her iPad all day.
Most of this summer has been much colder than normal. Monday of this week the high was about 68 I went to the grocery store in jeans! It's the end of July in Ohio! That's insane. Usually by now it's 105, we are sweating our asses off and just begging Mother Nature for a breeze. That has hampered some of our bucket list items such as having a water fight, swimming at night and going to a water park. Maybe before school is back in we will be able to warm up enough for maybe even one of these things. If not, I may take matters into my own hands and white out those on the list and add new things...
Tomorrow is Carson's first day of home-school Kindergarten. He'll probably be studying astrophysics lol.
XX
Summer Bucket List:
1. Camp in the back yard
2. Go to King's Island
3. Go to The Cincinnati Museum Center
4. Make tie-dyed clothing
5. Make home-made Icees
6. Go to the Newport Aquarium
7. Go to the movies
8. Make rock candy
9. Go to a farmer's market
10. Watch fireworks
11. Go to the Cincinnati Zoo
12. Play at a playground
13. Go geocaching
14. Have a picnic
15. Go for a bike ride
16. Make homemade pretzels
17. Go to a waterpark
18. Go swimming
19. Go swimming at night
20. Go to the mall
21. Disney movie day
22. Play in the rain
23. Make a pet rock
24. Make a photo booth picture
25. Go to Jungle Jim's
26. Go to Recreations Outlet
27. Play putt-putt
28 Go to Kings Island at night
29. Make jewelry
30. Watch tadpoles grow into frogs
31. Summer reading program at the library
32. Feed ducks
33. Plant a tree
34. See farm animals
35. Go to Ikea
36. Catch lightning bugs
37. Donate to Ronald McDonald House
38. Donate to CCHMC child life
39. Have soft serve ice cream
40. Build a fort
41. Have a water fight
42. Have a UDF malt
43. Barnes and Noble summer reading club
44. See a rainbow
45. Pet a turtle
46. Have a Dairy Queen Blizzard
47. Milkshake from Rally's
48. Make a clay whistle at the library
49. Have dinner on the deck
50. Have a baking day
Wednesday, July 30, 2014
Home School Here We Come!!
It has been a long time since I have posted something. To be honest, I'm so busy during the day it's hard to remember to do it at night. :) Carson is doing relatively well at the moment.
We got our approval letter from the school district allowing me to home school him which makes me very happy. I was so afraid that I was going to make the wrong choice by not sending him to school that I really had to sit down and write out a pros and cons list. Part of my reason for having such a hard time with my decision was because we had an 'exit meeting' at school at the beginning of May. This meeting was held at the school with not only the preschool coordinator, his therapists and his teacher Amber but also with the special education department for the school district.
They explained to me that since Carson already has an IEP in place that they would honor it by having him ride a bus that had 5 point harnesses in them and he would also get a bus aide because he isn't able to get on and off safely by himself. Not only that, they were promising he would get an aide for the school day. Maybe not a 1-1 aide but possibly a 1-2 or 1-3 aide depending if there were other children who had similar deficits to Carson. Since we live in a small rural community the school does not have a nurse on staff every day. Because of his diabetes, they even offered to hire a nurse to be at the school full time for him.
I was so overwhelmed when I left that day. I have heard so many horror stories about people having to fight with everything that they have to try to get aides for their children and here Carson was being handed one basically without me even having to so much as ask. So when I got home I was literally in tears because I seriously was about to have a nervous breakdown. To de-stress I started making dinner. Carson was in the other room on his iPad but he kept coming into the kitchen trying to get into the freezer where his beloved chicken nuggets are. Knowing he was hungry, I kept shooing him away so that he wouldn't get burnt by the grease in the pan for the hamburgers and kept telling him dinner would be ready in a few minutes. When he came in for the 5th time again going for the freezer I finally just said, "Okay, what is in this freezer that you want so badly??" He opened the freezer and then pushed my hand in towards a box of Popsicles. Knowing immediately he was trying to tell me his blood sugar was low, I grabbed his meter and sure enough. 58. I swear I felt like I was about an inch tall. Here I was so preoccupied with making dinner that I didn't even have a clue what he was trying to tell me.
That was what made me realize that homeschooling him (for now) is the best option for us. There have been several times that he hasn't shown any symptoms whatsoever that he is low. This happened to be one time that he was able to communicate it to me. What happens if he is in the classroom and, by no fault of the teacher, she is busy with other students and completely misses the signs? The next day I sat down and filled out all the necessary paperwork and had it in the mail by the end of that week. They were supposed to give me a written answer within 2 weeks of them receiving the letter but I still hadn't heard anything by the end of June so I called the county. They told me that they had approved it on June 1 and sent it to the local school district. They thought maybe the superintendent was on vacation because several other families in the same school had already called too.
I finally got my letter on July 23. Of course it was dated June 9. I don't care though. I'm just glad that I got it. I am officially starting August 1. I am trying a child-driven approach since trying to get him to even look at something he isn't interested in is like pulling teeth. Yesterday he counted by 5's all the way to 100 on the whiteboard so I'm not too concerned :)
XX
We got our approval letter from the school district allowing me to home school him which makes me very happy. I was so afraid that I was going to make the wrong choice by not sending him to school that I really had to sit down and write out a pros and cons list. Part of my reason for having such a hard time with my decision was because we had an 'exit meeting' at school at the beginning of May. This meeting was held at the school with not only the preschool coordinator, his therapists and his teacher Amber but also with the special education department for the school district.
They explained to me that since Carson already has an IEP in place that they would honor it by having him ride a bus that had 5 point harnesses in them and he would also get a bus aide because he isn't able to get on and off safely by himself. Not only that, they were promising he would get an aide for the school day. Maybe not a 1-1 aide but possibly a 1-2 or 1-3 aide depending if there were other children who had similar deficits to Carson. Since we live in a small rural community the school does not have a nurse on staff every day. Because of his diabetes, they even offered to hire a nurse to be at the school full time for him.
I was so overwhelmed when I left that day. I have heard so many horror stories about people having to fight with everything that they have to try to get aides for their children and here Carson was being handed one basically without me even having to so much as ask. So when I got home I was literally in tears because I seriously was about to have a nervous breakdown. To de-stress I started making dinner. Carson was in the other room on his iPad but he kept coming into the kitchen trying to get into the freezer where his beloved chicken nuggets are. Knowing he was hungry, I kept shooing him away so that he wouldn't get burnt by the grease in the pan for the hamburgers and kept telling him dinner would be ready in a few minutes. When he came in for the 5th time again going for the freezer I finally just said, "Okay, what is in this freezer that you want so badly??" He opened the freezer and then pushed my hand in towards a box of Popsicles. Knowing immediately he was trying to tell me his blood sugar was low, I grabbed his meter and sure enough. 58. I swear I felt like I was about an inch tall. Here I was so preoccupied with making dinner that I didn't even have a clue what he was trying to tell me.
That was what made me realize that homeschooling him (for now) is the best option for us. There have been several times that he hasn't shown any symptoms whatsoever that he is low. This happened to be one time that he was able to communicate it to me. What happens if he is in the classroom and, by no fault of the teacher, she is busy with other students and completely misses the signs? The next day I sat down and filled out all the necessary paperwork and had it in the mail by the end of that week. They were supposed to give me a written answer within 2 weeks of them receiving the letter but I still hadn't heard anything by the end of June so I called the county. They told me that they had approved it on June 1 and sent it to the local school district. They thought maybe the superintendent was on vacation because several other families in the same school had already called too.
I finally got my letter on July 23. Of course it was dated June 9. I don't care though. I'm just glad that I got it. I am officially starting August 1. I am trying a child-driven approach since trying to get him to even look at something he isn't interested in is like pulling teeth. Yesterday he counted by 5's all the way to 100 on the whiteboard so I'm not too concerned :)
XX
Sunday, March 23, 2014
Back to Posting
It has been a long time since I've posted anything. I have been so busy living the day-to-day, not to mention this winter has been HORRIBLE, that I really haven't had much to post about. Carson has missed a lot of school due to the weather. It always seems to hit early in the week and since school is on Mondays, they cancel.
So a few things that HAVE happened are this:
Carson was denied SSI disability because we had too much money in our bank account. It wasn't really a surprise since we had refinanced the house and had borrowed against the equity but at the same time it sucked because we knew that the only way for him to be eligible was if we spent the money. Since I'm not working anymore we were trying to hold onto it as long as we could in case the furnace broke or something. The major thing that burned me up was that we decided to pay off Baylee's orthodontist bill in full and once the payment posted to the account we turned in the signed paperwork telling SSI they could check our bank records but they didn't. By that point they had already denied him and we didn't know it. So now I have appealed the claim and the woman I have to work with is the most bitter person that I have probably ever dealt with on the phone. I'm trying to cut her some slack since I know that her glamorous job probably has people bitching her out all day but I spoke to her at 9 o'clock in the morning and she was so unpleasant it was sad.
We have also applied for BCMH for Carson. I think I have mentioned this program before. It is something like Medicaid for children with medical handicaps. Hopefully it will cover his hospital bills since they usually cover up to a 5 day stay in the hospital, even if it's the ICU. That bill was $36,000 before insurance! The ambulance ride cost more than the ER visit did!!
This past Wednesday I took Carson to school to have a special 'group therapy' session with Amber's morning pre-school class. I was a little worried since the last one we had gone to was a total nightmare. The therapist had brought in one of those colorful parachutes for the kids to play with/under/etc. and Carson was terrified by it. He sat in the corner most of the time as far away from it as he could possibly get. This time it was so different. He actually sat on the rug when the kids were instructed to do so. The kids were throwing balls back and forth to each other (Amber had Carson in her lap the whole time) and then they worked with hula hoops and bending and contorting with them. He genuinely had a good time. It was nice to see him playing with other kids. It was a first for him. She comes every other week and since we are on spring break this week it won't seem so long until he gets to go again.
Regular school has been interesting. They have been doing testing with him so that they can fill out his exit evaluation and write his IEP for kindergarten. I am anxiously awaiting the results of these tests to see what to do about school next year. I already bought part of the curriculum I am planning on using next year but I still need to know how far 'behind' he his before I figure out anything else. I did find out that I don't petition the school district that he is in for him to be home schooled. I actually have to petition the county. I think as long as I can prove that I have a HS diploma they can't deny me so at least at this point that is working to my advantage. Plus my little sister is almost finished with her first year of college to become a special education teacher. She transferred from Hanover College to Miami (Ohio) University because it's closer to home and they have the courses she needs to take so I will have all her input too as I work through this.
These past few months at home with just me and Carson home together I have focused all my time and energy on him. It was a hard adjustment going from working full-time to staying home and I have to admit that I wasn't watching what I was eating and I have gained a few (or more lol) pounds. I can honestly say that I have been depressed and have engulfed myself with taking care of Carson and his diabetes, which is a full-time job in itself, but also with him having to be watched 24/7 so he's not eating electrical cords or messing with things on the counter tops or the stove. Frankly it's exhausting. I'm still up late nights if he has had insulin later in the evening because I have to check him 3 hours after he gets it to make sure he isn't low and I have found that it's easier to just stay awake rather than go to sleep and then fight to wake up. Then I'm up early to get B on the bus. Some days Carson stays asleep and I can go back to bed and other days I'm not so lucky. Plus the time changed KILLED me. I have no idea why but it seriously took 2 weeks for me to get used to it. Mike looked at me about 3 weeks ago and nicely told me that it's time to do something about the extra weight. He told me he wants me 'healthy' enough so that I can live a long time to take care of Carson. At first I was offended. But he's right. So I decided to start taking time for myself. I am now rotating between running on the treadmill and doing Zumba in the comfort of my living room.
Right now I am running about 10-15 miles a week in the evenings and during the off days for running I do Zumba with one rest day. I don't see a difference with my body yet but mentally I feel so much better. I stream Netflix on my iPad and watch The Walking Dead while I'm running. I can usually do 1 episode per run. It's really motivating and it helps me clear my head, if only for 46 minutes at a time.
I think so far the hardest thing about Carson's diabetes has been knowing that there is only one person who's actions control whether he loses his eyesight, or kidneys, or feet. It's me. I am the only one taking care of his diabetes. Mike doesn't do sugar checks or give insulin. I have done it every time since we have been home from the hospital. I plan my grocery trips, runs etc all based on when I give him his insulin. If I give it to him at noon I know I have to be home by 3 to check him. Sometimes earlier if he was given a larger dose of insulin because sometimes it's too much and he is low by the time I get back. That happened one time here recently and won't happen again. I came in the house to find Carson handing me a tub of yogurt. I told him I needed to check him first before he could have it and Mike told me he had been trying to give it to him for at least a half an hour. When I asked if he had checked him he said no because it wasn't time. When I checked him right then his blood sugar was 29!!! It's not supposed to be below 80!! I was pissed. Being a diabetic himself I figured he would get the fact that Carson was being persistent about the yogurt but he didn't. I hate to say it but now I don't trust Mike. Him having blood sugar issues of his own just makes it that much harder because if he is low how is he supposed to take care of both of them? It's a scary thought.
Anyway. Enough for now. I should probably try to get some sleep.
Hopefully I'll remember to keep this updated more often.
XX
So a few things that HAVE happened are this:
Carson was denied SSI disability because we had too much money in our bank account. It wasn't really a surprise since we had refinanced the house and had borrowed against the equity but at the same time it sucked because we knew that the only way for him to be eligible was if we spent the money. Since I'm not working anymore we were trying to hold onto it as long as we could in case the furnace broke or something. The major thing that burned me up was that we decided to pay off Baylee's orthodontist bill in full and once the payment posted to the account we turned in the signed paperwork telling SSI they could check our bank records but they didn't. By that point they had already denied him and we didn't know it. So now I have appealed the claim and the woman I have to work with is the most bitter person that I have probably ever dealt with on the phone. I'm trying to cut her some slack since I know that her glamorous job probably has people bitching her out all day but I spoke to her at 9 o'clock in the morning and she was so unpleasant it was sad.
We have also applied for BCMH for Carson. I think I have mentioned this program before. It is something like Medicaid for children with medical handicaps. Hopefully it will cover his hospital bills since they usually cover up to a 5 day stay in the hospital, even if it's the ICU. That bill was $36,000 before insurance! The ambulance ride cost more than the ER visit did!!
This past Wednesday I took Carson to school to have a special 'group therapy' session with Amber's morning pre-school class. I was a little worried since the last one we had gone to was a total nightmare. The therapist had brought in one of those colorful parachutes for the kids to play with/under/etc. and Carson was terrified by it. He sat in the corner most of the time as far away from it as he could possibly get. This time it was so different. He actually sat on the rug when the kids were instructed to do so. The kids were throwing balls back and forth to each other (Amber had Carson in her lap the whole time) and then they worked with hula hoops and bending and contorting with them. He genuinely had a good time. It was nice to see him playing with other kids. It was a first for him. She comes every other week and since we are on spring break this week it won't seem so long until he gets to go again.
Regular school has been interesting. They have been doing testing with him so that they can fill out his exit evaluation and write his IEP for kindergarten. I am anxiously awaiting the results of these tests to see what to do about school next year. I already bought part of the curriculum I am planning on using next year but I still need to know how far 'behind' he his before I figure out anything else. I did find out that I don't petition the school district that he is in for him to be home schooled. I actually have to petition the county. I think as long as I can prove that I have a HS diploma they can't deny me so at least at this point that is working to my advantage. Plus my little sister is almost finished with her first year of college to become a special education teacher. She transferred from Hanover College to Miami (Ohio) University because it's closer to home and they have the courses she needs to take so I will have all her input too as I work through this.
These past few months at home with just me and Carson home together I have focused all my time and energy on him. It was a hard adjustment going from working full-time to staying home and I have to admit that I wasn't watching what I was eating and I have gained a few (or more lol) pounds. I can honestly say that I have been depressed and have engulfed myself with taking care of Carson and his diabetes, which is a full-time job in itself, but also with him having to be watched 24/7 so he's not eating electrical cords or messing with things on the counter tops or the stove. Frankly it's exhausting. I'm still up late nights if he has had insulin later in the evening because I have to check him 3 hours after he gets it to make sure he isn't low and I have found that it's easier to just stay awake rather than go to sleep and then fight to wake up. Then I'm up early to get B on the bus. Some days Carson stays asleep and I can go back to bed and other days I'm not so lucky. Plus the time changed KILLED me. I have no idea why but it seriously took 2 weeks for me to get used to it. Mike looked at me about 3 weeks ago and nicely told me that it's time to do something about the extra weight. He told me he wants me 'healthy' enough so that I can live a long time to take care of Carson. At first I was offended. But he's right. So I decided to start taking time for myself. I am now rotating between running on the treadmill and doing Zumba in the comfort of my living room.
Right now I am running about 10-15 miles a week in the evenings and during the off days for running I do Zumba with one rest day. I don't see a difference with my body yet but mentally I feel so much better. I stream Netflix on my iPad and watch The Walking Dead while I'm running. I can usually do 1 episode per run. It's really motivating and it helps me clear my head, if only for 46 minutes at a time.
I think so far the hardest thing about Carson's diabetes has been knowing that there is only one person who's actions control whether he loses his eyesight, or kidneys, or feet. It's me. I am the only one taking care of his diabetes. Mike doesn't do sugar checks or give insulin. I have done it every time since we have been home from the hospital. I plan my grocery trips, runs etc all based on when I give him his insulin. If I give it to him at noon I know I have to be home by 3 to check him. Sometimes earlier if he was given a larger dose of insulin because sometimes it's too much and he is low by the time I get back. That happened one time here recently and won't happen again. I came in the house to find Carson handing me a tub of yogurt. I told him I needed to check him first before he could have it and Mike told me he had been trying to give it to him for at least a half an hour. When I asked if he had checked him he said no because it wasn't time. When I checked him right then his blood sugar was 29!!! It's not supposed to be below 80!! I was pissed. Being a diabetic himself I figured he would get the fact that Carson was being persistent about the yogurt but he didn't. I hate to say it but now I don't trust Mike. Him having blood sugar issues of his own just makes it that much harder because if he is low how is he supposed to take care of both of them? It's a scary thought.
Anyway. Enough for now. I should probably try to get some sleep.
Hopefully I'll remember to keep this updated more often.
XX
Subscribe to:
Posts (Atom)