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
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