I picked up the kids from Alex today, and I was super tired because I didn't sleep well last night and I took lots of caffeine, a dew and then a double shot of expresso in my turtle mocha at caribou... plus Tim was at least a half an hour late.. so I drank my coffee and read my "God will make a way" book. It was funny. Jordan was telling me funny stories and stuff... Evan was screaming about his legos that his dad let him bring and put in the backseat of my car most of the way home. The funny thing was, I just turned up the music and took it in stride. I was calm and collected, even when i felt headachy and kind of like i was getting an upset stomache from all the caffeine. We got home and managed to keep things under control, despite Evan's best attempts to freak out. So I just held him for a while. That is one thing that I learned in "Parenting with Love and Logic" class.
I was really contemplating things on the drive to Alex today... sometimes that extra time is really good for me. It forces me to think and figure things out. So the sermon at church today was about really letting God into our lives this year and not just expecting him to fix everything. Then I was thinking about being a single parent and all that too. I get the feeling that sometimes people think that I want them to solve my problems, or that I need a man to help raise my kids. That is so not true. It is hard at times, but I have totally excepted it. And I know that I can do it on my own, except that I'm not alone... God is there helping me along, as long as I keep remembering to allow him to help. Sometimes it does get lonely and frustrating. But seriously I would never expect a guy to come in and save the day or raise my kids. I can do that just fine on my own. All I need is friends to be there for me when I need the extra shoulder to cry on, or when I just need to vent a bit. I don't even need a man in my life. I would sure like to find my soulmate someday, but at this point... I'm not counting on it.
Sunday, January 6, 2008
Thursday, January 3, 2008
Here is my compiled list of behaviors for Evan's doctors. He sees an ENT doctor and audiologist for his hearing loss and he gets PT, OT, and Speech therapy through the public school system. It's hard to say which behavious are related to the hearing loss, which are related to the 18q- chromosome deletion disorder, or which ones may be sensory processing disorder or something else. I'm going to add and update this list as necessary.
Evan has been diagnosed with the following: Hearing Loss, 18q- chromosome deletion, Van Willebrands disease, Asthma, Exceema.
· Mild hearing loss (35 decibels, instead of 30). His hearing loss is caused by narrow ear canals that don't have a direct link to the ear drum, it seems like the curve into a pocket so that the doctors can't visibly see his ear drum. He wears a baja softband hearing aid.
· Low muscle tone - especially legs and facial muscle (very flexible, bendy, doesn't have a full smile). This makes him super flexible and hard to hold or carry, besides the fact that he is rather tall and pretty strong for a 4 year old.
· Bruises easily
· Falls frequently. One day he was sitting on a picnic table at the park and he fell over and landed on his head and hit his hearing aid, which was then broken and needed to be sent back to the company to get fixed. I don't know how some of these things happen
· Sensitive to loud noises
· Hates bright lights, especially in the morning (sun light is the worst)
· Fearless when it comes to danger (doesn't learn from injuries). He'll get hurt and immediatly try to do it again.
· I was amazed at how big his eyes were and how he seemed to stare at things so intently when he was a baby. I always thought he was very inquisitive.
· He still puts everything in his mouth and is always sucking on or chewing on something (plastic toys, pop bottle covers, pens, rubber tires off of toys or parts of pens, marker covers, paper, cardboard). There seems to be no limit. He'd eat it if he could. I routinely have to inspect his mouth and sometimes have to remove a wad of paper or some item that he could choke on.
· He knows how to go potty on the potty and is excited when he does it, but he hasn't been consistant. He will try to remove his pull-up in the living room. He will stick his hand in his dirty diaper. He will refuse to let me change his diaper or pull-up sometimes.
· He will pull my hair, try to bite, dig his chin or elbows into me, and climb on me frequently
· He wants to be carried and held a lot
· He repeats words and phrases, especially TV commercials and he gets MAD if you don't repeat it or aknowledge him the way he expects you to. Sometimes when you respond, he still is upset and keeps on.repeating commercial text over and over in a high pitched voice... even when he doesn't even understand it.. (The latest commercial phrases he repeats: puppets in prison, I love it I love it I love it, I want a salad...). Sometimes he'll say "I, I, I, I... before he gets out what he wants to say".
· It's hard to know exactly what he understands sometimes. And it seems to vary; like there are good days and bad days. Sometimes when you ask him a question, he'll answer yes or no.... but other times he will stare blankly. Sometimes he will just repeat what you said rather than answer the question.
· Can't reason with him. Doesn't respond to consequences, rewards consistantly. Sometimes I can get him in the house if I tell him he can have a popsicle when we get inside, but it doesn't always work. He freaks out for a popsicle, even when he didn't willingly come inside. It takes tons of patience, repetition, and persistance to get him to respond either way. If I remove him from a store, he freaks out and refuses to let me buckle him in the car seat and then he screams bloody murder all the way home (sometimes he continues for up to 1/2 hour). It is great fun when all kinds of people stare and look at me like I'm doing something wrong.
· He will throw a tantrum and kick and scream and yell and run away from me in a store or outside and I have to carry him out of the store or into the house as he nearly throws my back out or almost forces me to drop him
· He likes to line up objects
· Dumps water on self on purpose, plays in toilet water, one day I caught him with his head in the toilet, chewing on hairbrush handle,
· Spills drink at table, floor, or on himself; seems to be on purpose, dips food in drink, dumps drink on food (on plate) sometimes
· Unusually high activity level. He is very active. He just goes and goes and goes. Its hard for the rest of us to even keep track of him. He won't take naps, has a hard time going to bed before 10, but is up by 7 am or earlier. Extreemly difficult to get him to unwind or calm down.
· Physical clumsiness or carelessness
· Poor body awareness
· Tendency to be easily distracted
· Impulsive physical or verbal behavior
· Difficulty learning new movements
· Seems to have difficulty in making transitions from one situation to another
· Has developmental delays in speech, language and motor skills, and learning difficulties/delays in academic achievement.
· Constantly climbs or jumps from high places
· Tries to sit on top of who ever is next to him
· Seems to bump into things frequently
· Sometimes does dangerous things, doesn't seem to feel much pain
Evan has been diagnosed with the following: Hearing Loss, 18q- chromosome deletion, Van Willebrands disease, Asthma, Exceema.
· Mild hearing loss (35 decibels, instead of 30). His hearing loss is caused by narrow ear canals that don't have a direct link to the ear drum, it seems like the curve into a pocket so that the doctors can't visibly see his ear drum. He wears a baja softband hearing aid.
· Low muscle tone - especially legs and facial muscle (very flexible, bendy, doesn't have a full smile). This makes him super flexible and hard to hold or carry, besides the fact that he is rather tall and pretty strong for a 4 year old.
· Bruises easily
· Falls frequently. One day he was sitting on a picnic table at the park and he fell over and landed on his head and hit his hearing aid, which was then broken and needed to be sent back to the company to get fixed. I don't know how some of these things happen
· Sensitive to loud noises
· Hates bright lights, especially in the morning (sun light is the worst)
· Fearless when it comes to danger (doesn't learn from injuries). He'll get hurt and immediatly try to do it again.
· I was amazed at how big his eyes were and how he seemed to stare at things so intently when he was a baby. I always thought he was very inquisitive.
· He still puts everything in his mouth and is always sucking on or chewing on something (plastic toys, pop bottle covers, pens, rubber tires off of toys or parts of pens, marker covers, paper, cardboard). There seems to be no limit. He'd eat it if he could. I routinely have to inspect his mouth and sometimes have to remove a wad of paper or some item that he could choke on.
· He knows how to go potty on the potty and is excited when he does it, but he hasn't been consistant. He will try to remove his pull-up in the living room. He will stick his hand in his dirty diaper. He will refuse to let me change his diaper or pull-up sometimes.
· He will pull my hair, try to bite, dig his chin or elbows into me, and climb on me frequently
· He wants to be carried and held a lot
· He repeats words and phrases, especially TV commercials and he gets MAD if you don't repeat it or aknowledge him the way he expects you to. Sometimes when you respond, he still is upset and keeps on.repeating commercial text over and over in a high pitched voice... even when he doesn't even understand it.. (The latest commercial phrases he repeats: puppets in prison, I love it I love it I love it, I want a salad...). Sometimes he'll say "I, I, I, I... before he gets out what he wants to say".
· It's hard to know exactly what he understands sometimes. And it seems to vary; like there are good days and bad days. Sometimes when you ask him a question, he'll answer yes or no.... but other times he will stare blankly. Sometimes he will just repeat what you said rather than answer the question.
· Can't reason with him. Doesn't respond to consequences, rewards consistantly. Sometimes I can get him in the house if I tell him he can have a popsicle when we get inside, but it doesn't always work. He freaks out for a popsicle, even when he didn't willingly come inside. It takes tons of patience, repetition, and persistance to get him to respond either way. If I remove him from a store, he freaks out and refuses to let me buckle him in the car seat and then he screams bloody murder all the way home (sometimes he continues for up to 1/2 hour). It is great fun when all kinds of people stare and look at me like I'm doing something wrong.
· He will throw a tantrum and kick and scream and yell and run away from me in a store or outside and I have to carry him out of the store or into the house as he nearly throws my back out or almost forces me to drop him
· He likes to line up objects
· Dumps water on self on purpose, plays in toilet water, one day I caught him with his head in the toilet, chewing on hairbrush handle,
· Spills drink at table, floor, or on himself; seems to be on purpose, dips food in drink, dumps drink on food (on plate) sometimes
· Unusually high activity level. He is very active. He just goes and goes and goes. Its hard for the rest of us to even keep track of him. He won't take naps, has a hard time going to bed before 10, but is up by 7 am or earlier. Extreemly difficult to get him to unwind or calm down.
· Physical clumsiness or carelessness
· Poor body awareness
· Tendency to be easily distracted
· Impulsive physical or verbal behavior
· Difficulty learning new movements
· Seems to have difficulty in making transitions from one situation to another
· Has developmental delays in speech, language and motor skills, and learning difficulties/delays in academic achievement.
· Constantly climbs or jumps from high places
· Tries to sit on top of who ever is next to him
· Seems to bump into things frequently
· Sometimes does dangerous things, doesn't seem to feel much pain
Wednesday, January 2, 2008
Christmas and New Years holiday events
I haven't posted for a while, so I'll have to try and remember what has been going on lately. Evan has been obsessed with my Christmas decorations, ever since I put them up a few weeks ago. He loves to play with my nativity set and rearracnge all my decorations. He also puts the Christmas stockings on his hands and runs around the house. He has knocked over our table top tree a couple of times and he managed to steal baby Jesus from my nativity set. It has been a couple weeks, and it still hasn't turned up. I have no idea what he did with it.
We went to the mall and Evan sat on Santa's lap after about 1/2 hour of coaxing. Then on the weekend we went to Santa Villiage again and when Evan sat on Santa's lap there, they were overjoyed because this was the same boy who was scared to death of Santa two weeks before.
During the holiday break from school, Evans energy was up as usual... no naps, and staying up until 10 or 11 every night. Evan has school again tomorrow, so hopefully now we can get back to a more normal routine. We went to Hillsboro today and had lunch with grandma and did some laundry. On the way home, I looked in the back seat hoping to see Evan sleeping away... but instead saw that he had dumped out the entire basket of clean folded clothes all over the really dirty back seat. I was not too impressed. When we got home, I treid to get him to take a nap, but instead I almost fell asleap and he didn't. Hmmmm. Some days can be quite frustrating.
Yesterday he had way too much energy, and I couldn't keep up with him. He was running around the house saying "I'm Santa, Ho, Ho, Ho, Merry Christmas" over and over and over again. LOL. I really hope it settles down a bit when he goes back to school.
We went to the mall and Evan sat on Santa's lap after about 1/2 hour of coaxing. Then on the weekend we went to Santa Villiage again and when Evan sat on Santa's lap there, they were overjoyed because this was the same boy who was scared to death of Santa two weeks before.
During the holiday break from school, Evans energy was up as usual... no naps, and staying up until 10 or 11 every night. Evan has school again tomorrow, so hopefully now we can get back to a more normal routine. We went to Hillsboro today and had lunch with grandma and did some laundry. On the way home, I looked in the back seat hoping to see Evan sleeping away... but instead saw that he had dumped out the entire basket of clean folded clothes all over the really dirty back seat. I was not too impressed. When we got home, I treid to get him to take a nap, but instead I almost fell asleap and he didn't. Hmmmm. Some days can be quite frustrating.
Yesterday he had way too much energy, and I couldn't keep up with him. He was running around the house saying "I'm Santa, Ho, Ho, Ho, Merry Christmas" over and over and over again. LOL. I really hope it settles down a bit when he goes back to school.
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