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.
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Documenting the day to day struggles and victories of raising a child with a rare genetic condition - 15q24 microdeletion syndrome - and type 1 diabetes.
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.
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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.
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