Well, now the school has come back and said that what they actually gave us before were raw scores for the tests which both have a mean of 100. Which explains why Jason's scores seemed so high and means that percentile-wise he is right around the 50th for both. Still surprised at how high the motor score is, but not shocked like before. Speech now seems a little low, but it makes sense with him not finishing the test. Anyway, I wish people would be clearer about this stuff! It doesn't change anything though, and like everyone keeps reminding us TEST SCORES AREN'T EVERYTHING!
Jason's OT has given us some leads on possible therapists in the area too! Yay!
Thanks to everybody for your encouragement and for helping us keep things in perspective.
Friday, August 15, 2008
Tuesday, August 12, 2008
Choosing to see it as good news...
Jason turns three next month. I can hardly believe it! This is a big birthday for him because it means that he is no longer eligible for state-provided physical/ occupational therapy. As of his birthday it becomes the school district's responsibility to provide any services he needs, not the state's. In KY (I don't know about other places), this means he would go to the public special ed preschool and his therapist would visit him there.
I wasn't a big fan of this plan for a couple reasons, primarily because in my experience over the last two years one of the key philosophies in early intervention is heavy parental involvement. Me and John are involved in care plan meetings and goal-setting, the therapists come to our house, they teach us how to continue working with him for the rest of the week (or two weeks) before they come again. I am present at every session, and John makes it to a good portion of them as well. Anyway, if I understood everything right, this would all change. A therapist would come and pull him out of class once a month, work with him for an hour and then tell his teacher what she could do to help him (I met her and she is excellent, but she would simultaneously be working with another dozen kids). The therapist would meet with us once a year. It just seems weird to me that for three years we're told our participation is essential and suddenly one day our role is practically an afterthought and we don't even have direct access to talk to his therapist regularly.
But I'm getting off topic. Even though we we're totally enthusiatic about this we started doing all the paperwork and meetings we needed in order to get Jason enrolled. At least he continue to have therapy, even if it wasn't as often and we couldn't reinforce it like we have been. Last month they finally did his formal testing to see if he qualified. We had them test motor skills (obviously) and also language skills, because his current therapists have mentioned that they think his hemiparesis might be affecting his oral muscles and affecting his ability to pronounce words correctly.
Right before the test we found out that he would have to test at two standard deviations below the mean in order to qualify based on motor skills (basically, be in the bottom 2-3% of kids his age). At that point, we pretty much knew he wasn't going to qualify based on motor skills. So we were pretty much just waiting to see how speech went. When the test started, I realized they were't even evaluating his ability to form words, just his comprehension/vocabulary/rule skills. But then Jason got distracted before the test was over and the therapist giving the test decided to call it quits. Since quitting early would bring his score down, I thought maybe that would qualify him.
Nope! Test results came back last week. Speech skills = 91st percentile. Motor skills = 95th percentile (that's about two standard deviations above the mean)! We're not really sure how he did so well on motor skills. I was there for the test, and he did well, but there were still a couple things he had trouble with. Plus, when he was tested in June by his PT he was in the 16th percentile. From what I understand from his therapists though, the tests they do are more detailed than the school tests. For example, Jason can do most things (or maybe more things according to this test) a "normal" 34-month-old can do, but he does them using different strategies and movements than a "normal" kid. His June test recorded his compensatory skills and he scored with mild delay because he does not do 34-month-old skills in the same way as other kids. His school test probably ignored his compensatory skills and so he scored high because he acheives the same results as a "normal" kid.
As far as speech goes, it turns out that Jason was already answering questions designed for 3 1/2-4-year-olds when the therapist terminated the test. The report said he may have scored even higher if his attention span was a little longer! Still we don't have any more information on whether his pronouciation problems are pathological or just age-related. We'll probably just have to wait until he's older.
So it is great news that Jason is doing so well. The frustrating part is that everybody - us, his current therapy team, the school administrator - knows that he would benefit from continued therapy and that he could potentially lose a lot of ground if he doesn't get it. And now he's about to be one of the kids that falls through the cracks of a system that relies rigidly on standardized tests that may or may not accurately reflect a kid's needs. Scary!
We're hoping that our insurance will cover PT and/or OT at an outpatient clinic, since that seems to be our only option if we want to continue therapy with Jason. Guess we'll find out next month...
In the meantime, I would just like to recognize Kristin, Martina, Pam and Iris, Jason's therapists, for the incredible difference they have made in his life and for helping him acheive everything he has so far. I'm really going to miss having their support and input. I would be a lot more worried about this situation if it wasn't for everything they have taught us. I am also confident in my son. The therapy wouldn't have gotten him to where he is today if he wasn't so bright, determined, and full of life. He's a great kid and we are just praying we can give him all the tools he needs to reach his maximum potential.
I wasn't a big fan of this plan for a couple reasons, primarily because in my experience over the last two years one of the key philosophies in early intervention is heavy parental involvement. Me and John are involved in care plan meetings and goal-setting, the therapists come to our house, they teach us how to continue working with him for the rest of the week (or two weeks) before they come again. I am present at every session, and John makes it to a good portion of them as well. Anyway, if I understood everything right, this would all change. A therapist would come and pull him out of class once a month, work with him for an hour and then tell his teacher what she could do to help him (I met her and she is excellent, but she would simultaneously be working with another dozen kids). The therapist would meet with us once a year. It just seems weird to me that for three years we're told our participation is essential and suddenly one day our role is practically an afterthought and we don't even have direct access to talk to his therapist regularly.
But I'm getting off topic. Even though we we're totally enthusiatic about this we started doing all the paperwork and meetings we needed in order to get Jason enrolled. At least he continue to have therapy, even if it wasn't as often and we couldn't reinforce it like we have been. Last month they finally did his formal testing to see if he qualified. We had them test motor skills (obviously) and also language skills, because his current therapists have mentioned that they think his hemiparesis might be affecting his oral muscles and affecting his ability to pronounce words correctly.
Right before the test we found out that he would have to test at two standard deviations below the mean in order to qualify based on motor skills (basically, be in the bottom 2-3% of kids his age). At that point, we pretty much knew he wasn't going to qualify based on motor skills. So we were pretty much just waiting to see how speech went. When the test started, I realized they were't even evaluating his ability to form words, just his comprehension/vocabulary/rule skills. But then Jason got distracted before the test was over and the therapist giving the test decided to call it quits. Since quitting early would bring his score down, I thought maybe that would qualify him.
Nope! Test results came back last week. Speech skills = 91st percentile. Motor skills = 95th percentile (that's about two standard deviations above the mean)! We're not really sure how he did so well on motor skills. I was there for the test, and he did well, but there were still a couple things he had trouble with. Plus, when he was tested in June by his PT he was in the 16th percentile. From what I understand from his therapists though, the tests they do are more detailed than the school tests. For example, Jason can do most things (or maybe more things according to this test) a "normal" 34-month-old can do, but he does them using different strategies and movements than a "normal" kid. His June test recorded his compensatory skills and he scored with mild delay because he does not do 34-month-old skills in the same way as other kids. His school test probably ignored his compensatory skills and so he scored high because he acheives the same results as a "normal" kid.
As far as speech goes, it turns out that Jason was already answering questions designed for 3 1/2-4-year-olds when the therapist terminated the test. The report said he may have scored even higher if his attention span was a little longer! Still we don't have any more information on whether his pronouciation problems are pathological or just age-related. We'll probably just have to wait until he's older.
So it is great news that Jason is doing so well. The frustrating part is that everybody - us, his current therapy team, the school administrator - knows that he would benefit from continued therapy and that he could potentially lose a lot of ground if he doesn't get it. And now he's about to be one of the kids that falls through the cracks of a system that relies rigidly on standardized tests that may or may not accurately reflect a kid's needs. Scary!
We're hoping that our insurance will cover PT and/or OT at an outpatient clinic, since that seems to be our only option if we want to continue therapy with Jason. Guess we'll find out next month...
In the meantime, I would just like to recognize Kristin, Martina, Pam and Iris, Jason's therapists, for the incredible difference they have made in his life and for helping him acheive everything he has so far. I'm really going to miss having their support and input. I would be a lot more worried about this situation if it wasn't for everything they have taught us. I am also confident in my son. The therapy wouldn't have gotten him to where he is today if he wasn't so bright, determined, and full of life. He's a great kid and we are just praying we can give him all the tools he needs to reach his maximum potential.
More Storms!!!
Be careful what you pray for. On July 20th, when we said our bedtime prayers, Jason asked for Jesus to turn the "nunder" (thunder) on again (he loves storms). There were T-storms in the forecast, so I told him we probably would have one later. And we did. This one had it in for us. Right before midnight the wind picked up and started swirling and everything started shaking, so we grabbed Jason and hunkered down in our tornado spot. Still don't know if it was an actual tornado or not, but when we came out there was water on the carpet and dripping down the walls around the windows on the whole west side of our house. John went outside when everything died down a little to find our garage door smashed in two and the whole garage had shifted on the foundation so bad we couldn't shut the side door either. Jason slept with us the rest of the night cause he said the storm was "cool and scared." He woke up the next morning and informed me that "nunder gone, garage door crack in half," told me he needed breakfast, and then he was going to "fix garage and nindows (windows) with tape". When John and I chuckled, he looked at us reprovingly and very seriously added "and skoos (screws)".
Then John had to leave for work, but he couldn't get his Jeep out of the garage so he took mine and had to offroad a little to get around the tree that fell across our driveway (we lost a total of three trees). Meanwhile, our insurance company sent somebody out to dry up all the water and they ended up tearing up some of the carpet padding and ripping out several sections of ruined drywall. When they peeled back the carpet in our room, they found that apparently the old owners also had some trouble with water damage. There is a basketball-sized hole in our floor and more rotting out around it that someone had covered with sheet metal and relaid the carpet back over it. They had told us when we bought the house that there had been a "problem" with our floor at one point and that they had "fixed" it. Always clarify what "fixed" means!! So for the last three weeks we have been living with four chunks of wall missing, a rather scary hole in our floor, and no garage door to protect us if another storm rolls in.
So as you all can imagine we are loving this idiotic state and our deathtrap of a house more and more. Though we were the only ones in our neighborhood to sustain damage, there was enough damage in the surrounding area to keep the adjusters very busy, so we didn't hear back from the insurance company until yesterday. $15,000 worth of damage! $1200 deductible. Yikes!
Our garage door
Then John had to leave for work, but he couldn't get his Jeep out of the garage so he took mine and had to offroad a little to get around the tree that fell across our driveway (we lost a total of three trees). Meanwhile, our insurance company sent somebody out to dry up all the water and they ended up tearing up some of the carpet padding and ripping out several sections of ruined drywall. When they peeled back the carpet in our room, they found that apparently the old owners also had some trouble with water damage. There is a basketball-sized hole in our floor and more rotting out around it that someone had covered with sheet metal and relaid the carpet back over it. They had told us when we bought the house that there had been a "problem" with our floor at one point and that they had "fixed" it. Always clarify what "fixed" means!! So for the last three weeks we have been living with four chunks of wall missing, a rather scary hole in our floor, and no garage door to protect us if another storm rolls in.
So as you all can imagine we are loving this idiotic state and our deathtrap of a house more and more. Though we were the only ones in our neighborhood to sustain damage, there was enough damage in the surrounding area to keep the adjusters very busy, so we didn't hear back from the insurance company until yesterday. $15,000 worth of damage! $1200 deductible. Yikes!
Our garage door
Friday, February 8, 2008
Storms and Stoves
In case anyone has been watching the weather channel and wondered, we're OK. The 60-odd tornadoes that hit Kentucky and the surrounding states missed us. Our county and some of the bordering counties still sustained some nasty damage from the thunderstorm and near-hurricane force winds: power outages, property damage, and even a few injuries and fatalities. Thankfully, after flipping one of our trailers and blowing the grill off our porch, the storm left us alone. I've decided I prefer wondering if my car battery will be frozen in the morning or speculating about when the mountain is finally going to blow up to worrying that the wind is going to knock my house flat. I'm not a fan of waking up because my dishes are rattling so hard in the cupboard that I'm afraid I'll find a kitchen full of glass shards in the morning.
Speaking of nasty things to find in your kitchen, my stove has been producing a really odd smell every time I turn it on for a while now. After cleaning every inch of it, I was completely baffled as to why it would smell so awful. Then one day I walked into the kitchen and could have sworn I saw a little brown tail whisk under the back burner. Already busy and stressed about other things, I asked John if he would check to see if there was a mouse in the stove. Armed with a screwdriver, he discovered that there was not just one mouse burrowing through the insulation in the stove, there were nests, tunnels, poop, chewed wires, burn marks, and DEAD ANIMALS in there. If that were not gross enough, there was a screw missing where someone had put the stove back together after placing MOUSETRAPS inside the stove. So not only has the stove been infested since before we bought the house, someone KNEW what a disgusting fire hazard it was and decided not to fix it or tell bother telling us!!! I was furiously pacing, yelling hyperbolic nonsense ("I CAN'T live here ANYMORE!") while my husband calmly started cleaning up and coming up with a budget for a new oven. We went to Lowe's and picked one up and my Jeep got a flat tire on the way home, which unleashed my next tirade of hyperbole ("Things never EVER go right!"). John was very gracious when I apologized later that night and put a positive spin on the whole thing. We found a mouse hole we had missed previously and blocked it up, we have a very nice new oven, and he is trying to replace the insulation in the old one and turn it into a kiln for power-coating parts in the shop. I love him...
Despite the storm and stove issue, things are going well here. John finally went to the doctor and got his knees X-rayed, which confirmed that his meniscus (cartilage) is eroding. It's not good news, but we already expected it and at least now they can either fix it or give him disability for it. He's having an MRI sometime soon so they can get a better look at it.
Jason is doing good. He says new words and does new things faster than we can keep up with, and he is still doing great with the babysitter.
School is going well for me. I passed another lab checkpoint, just barely the other day. I was supposed to be demonstrating my understanding of sterile technique by doing a sterile dressing change. It's not hard, but it does have a lot of steps and requires following a lot of rules very precisely. I was the first one to go in my group and maybe that's why my lab instructor decided to mess with me. I started doing my little routine I had practiced, and all of a sudden she starts moving my mannequin. "What if your patient does this?" she said. I wasn't ready for the interruption, but I gave her the right answer, breathed a sigh of relief, and turned back to what I was doing and realized I had contaminated. I explained how I would have corrected my mistake and continued, but was a little flustered and screwed up again about 30 seconds later. I fixed it, but made an awful face which made my teacher and lab partners start to giggle. Which totally threw me off and made me giggle and I made another mistake. Long story short, I broke almost every principle of sterile technique there is, but I caught my self every time and knew how to fix it, so my teacher passed me anyway. Plus I made her laugh hysterically. I made up for it on the exam the next day though: 96%, giving me a solid A in the class (for the moment anyway).
Here are some new pictures, I know it's been awhile:
Jason playing with the big ball. He's been really happy that the weather's warmed up and he can play outside more.
Jason loves it when the cats jump in his crib and likes to pretend to read to them. He calls it "Kitty cuddle a book."
Jason explaining whats wrong with Daddy's Jeep.
Me and J, just because we haven't taken a picture with me in it for a while.
Speaking of nasty things to find in your kitchen, my stove has been producing a really odd smell every time I turn it on for a while now. After cleaning every inch of it, I was completely baffled as to why it would smell so awful. Then one day I walked into the kitchen and could have sworn I saw a little brown tail whisk under the back burner. Already busy and stressed about other things, I asked John if he would check to see if there was a mouse in the stove. Armed with a screwdriver, he discovered that there was not just one mouse burrowing through the insulation in the stove, there were nests, tunnels, poop, chewed wires, burn marks, and DEAD ANIMALS in there. If that were not gross enough, there was a screw missing where someone had put the stove back together after placing MOUSETRAPS inside the stove. So not only has the stove been infested since before we bought the house, someone KNEW what a disgusting fire hazard it was and decided not to fix it or tell bother telling us!!! I was furiously pacing, yelling hyperbolic nonsense ("I CAN'T live here ANYMORE!") while my husband calmly started cleaning up and coming up with a budget for a new oven. We went to Lowe's and picked one up and my Jeep got a flat tire on the way home, which unleashed my next tirade of hyperbole ("Things never EVER go right!"). John was very gracious when I apologized later that night and put a positive spin on the whole thing. We found a mouse hole we had missed previously and blocked it up, we have a very nice new oven, and he is trying to replace the insulation in the old one and turn it into a kiln for power-coating parts in the shop. I love him...
Despite the storm and stove issue, things are going well here. John finally went to the doctor and got his knees X-rayed, which confirmed that his meniscus (cartilage) is eroding. It's not good news, but we already expected it and at least now they can either fix it or give him disability for it. He's having an MRI sometime soon so they can get a better look at it.
Jason is doing good. He says new words and does new things faster than we can keep up with, and he is still doing great with the babysitter.
School is going well for me. I passed another lab checkpoint, just barely the other day. I was supposed to be demonstrating my understanding of sterile technique by doing a sterile dressing change. It's not hard, but it does have a lot of steps and requires following a lot of rules very precisely. I was the first one to go in my group and maybe that's why my lab instructor decided to mess with me. I started doing my little routine I had practiced, and all of a sudden she starts moving my mannequin. "What if your patient does this?" she said. I wasn't ready for the interruption, but I gave her the right answer, breathed a sigh of relief, and turned back to what I was doing and realized I had contaminated. I explained how I would have corrected my mistake and continued, but was a little flustered and screwed up again about 30 seconds later. I fixed it, but made an awful face which made my teacher and lab partners start to giggle. Which totally threw me off and made me giggle and I made another mistake. Long story short, I broke almost every principle of sterile technique there is, but I caught my self every time and knew how to fix it, so my teacher passed me anyway. Plus I made her laugh hysterically. I made up for it on the exam the next day though: 96%, giving me a solid A in the class (for the moment anyway).
Here are some new pictures, I know it's been awhile:
Jason playing with the big ball. He's been really happy that the weather's warmed up and he can play outside more.
Jason loves it when the cats jump in his crib and likes to pretend to read to them. He calls it "Kitty cuddle a book."
Jason explaining whats wrong with Daddy's Jeep.
Me and J, just because we haven't taken a picture with me in it for a while.
Sunday, January 27, 2008
Quick update for January
Busy!!! This month has been so busy. I started nursing school on the 11th, which has made our family schedule completely different. I, who am normally at home 90% of the time, am now in school four, sometimes five days a week. Part of me really likes it: I feel more productive; another part of me liked the slower pace and being home with Jason all day much better. Fortunately, Jason seems to be completely content with the new arrangement. He goes to my friend Amanda's while I'm at school and loves it. Amanda is wonderful with him, and J adores her and her kids (ages 9, 5, and 9 mo). So that has been a huge blessing.
School itself is hard, but exciting. I knew it would be a lot of work, but I don't think I anticipated the aggressive scheduling and the mountains of homework. I am a little nervous: there are several girls in my class who are retaking Nursing 101 because a third (a THIRD!) of last semester's class failed/dropped out because they didn't have the necessary 78% grade at midterm (one of them had a 77.98% and still got kicked out). So all that to say it is a big challenge and our teachers are strict (on a side note, if, by any chance, Mrs. Behrmann ends up reading this: THANK YOU! although I have attended two community colleges and three universities since I had you as a teacher, this is the most work I have had to do since that year we studied the American Revolution and had to read ungodly amounts of historically significant documents, so if I came away from that with an A at age 15, I should be able to pull off at least 78% doing this at age 22, right?). We had our first test last Friday and I pulled off a 92% (which on their grading scale is a B) , which made me very happy.
Jason, as I said, is doing just fine with Mommy's new schedule. He wakes up most mornings asking if we are "go to Lella's?" (Bella is Amanda's baby and is pretty much Jason's favorite person in the entire world). Although Jason usually screams if I try leaving him anywhere, he was happy even on the first day at Amanda's . Instead of screams and "Noooooo go bye-bye Mommy!!!" I got a smile and a wave and "bye Mom." I am thrilled that he is so content, but he could have been a tiny bit sadder to see me go...
Another new activity for Jason this month was starting physical therapy again. Though he has been seeing an occupational therapist since the summer, he hasn't had PT since Alaska. His initial assessment was pretty interesting. They use a test set up to compare his skills to other kids his age in different categories. He scored low in motor stability and balance, which we kinda expected. However, he scored way high (above the 90th percentile) in the social/emotional and motor organization (spatial intelligence) categories. So basically, he's Mr. Personality and smart with mechanical stuff just like his dad. I love it when the experts tell me what I already know...
Speaking of John, he is enjoying a little extra one-on-one time with Jason, since he is sometimes off work and picks up Jason before I am out of school. He has also been great about telling me not to freak out over school, to take a nap, or to forget the homework and just come hang out with him (he is awesome, I love that man!!) Other than that, not much is new for him, though he will have a lot of new stuff coming up in the spring with his promotion and new training and things.
Well, I should probably get off and either go study or find out what the boys are up to...I'm definitely leaning toward the latter...
School itself is hard, but exciting. I knew it would be a lot of work, but I don't think I anticipated the aggressive scheduling and the mountains of homework. I am a little nervous: there are several girls in my class who are retaking Nursing 101 because a third (a THIRD!) of last semester's class failed/dropped out because they didn't have the necessary 78% grade at midterm (one of them had a 77.98% and still got kicked out). So all that to say it is a big challenge and our teachers are strict (on a side note, if, by any chance, Mrs. Behrmann ends up reading this: THANK YOU! although I have attended two community colleges and three universities since I had you as a teacher, this is the most work I have had to do since that year we studied the American Revolution and had to read ungodly amounts of historically significant documents, so if I came away from that with an A at age 15, I should be able to pull off at least 78% doing this at age 22, right?). We had our first test last Friday and I pulled off a 92% (which on their grading scale is a B) , which made me very happy.
Jason, as I said, is doing just fine with Mommy's new schedule. He wakes up most mornings asking if we are "go to Lella's?" (Bella is Amanda's baby and is pretty much Jason's favorite person in the entire world). Although Jason usually screams if I try leaving him anywhere, he was happy even on the first day at Amanda's . Instead of screams and "Noooooo go bye-bye Mommy!!!" I got a smile and a wave and "bye Mom." I am thrilled that he is so content, but he could have been a tiny bit sadder to see me go...
Another new activity for Jason this month was starting physical therapy again. Though he has been seeing an occupational therapist since the summer, he hasn't had PT since Alaska. His initial assessment was pretty interesting. They use a test set up to compare his skills to other kids his age in different categories. He scored low in motor stability and balance, which we kinda expected. However, he scored way high (above the 90th percentile) in the social/emotional and motor organization (spatial intelligence) categories. So basically, he's Mr. Personality and smart with mechanical stuff just like his dad. I love it when the experts tell me what I already know...
Speaking of John, he is enjoying a little extra one-on-one time with Jason, since he is sometimes off work and picks up Jason before I am out of school. He has also been great about telling me not to freak out over school, to take a nap, or to forget the homework and just come hang out with him (he is awesome, I love that man!!) Other than that, not much is new for him, though he will have a lot of new stuff coming up in the spring with his promotion and new training and things.
Well, I should probably get off and either go study or find out what the boys are up to...I'm definitely leaning toward the latter...
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