The Gas Fiasco
As of 6:30 last night, we have gas service restored! What a trip this has been. Whoa. The new plumbing company we used was wonderful. Friendly service, FAST, and a decent price...all with the added benefit of discussing with a knowledgeable plumber. If you are a local friend and need plumbing work done, call Crown Plumbing! So, the plumbers started work on Wednesday. I came home to find the most beautiful looking trench that I've ever laid eyes on in the backyard, progress! They got the line replaced and the new up-to-code valves installed on Wednesday night, but when they pressured tested the line, gas was still being lost somewhere. We have (well, HAD) two old-school gas wall heaters in the bathroom...Josh didn't mention them to the plumber, because the guy from John Moore told him they were not important for this. Turns out, he was WRONG, they were important AND they were leaking gas. Because the new plumber wasn't prepared for working on these, he had to get additional parts and come back the next day. The heaters were removed and the lines were capped off (and now we are sporting some wicked-fancy holes in our sheet rock) and he retested the line. It was STILL loosing pressure, so he went in search of more leaks. He found on in the cubby in BubTar's closet that houses the furnace. There was a leak at one of the 90 degree turns in the line, so he fixed that...then he found another...and ANOTHER! Three leaks up there, one in each of the bathrooms, in addition to the line itself detaching. Even though they were probably minuscule leaks without full pressure in the lines, it is still a little unsettling to discover! He fixed everything on Thursday morning. Thursday afternoon, a city inspector came out and said it was in working order and they would release the utilities so the gas company could return our meter and turn our service back on. That evening, a worker from the gas company came out and refuse to install our meter because the trench was not filled in yet. It seemed like a total BS excuse since the neither the plumber nor the city inspector mentioned that was a problem. Alas, what can you do? So he left and we still had no gas. Friday morning, the plumber had the diggers come fill back in the trench and we called the gas company back. I stayed home on Friday until it was time to take KayTar to therapy, at which time Josh came to sit at the house just in case they showed. They did show, but got called out on an emergency and said they couldn't say when they would be back. I just picked the kids up after therapy and brought them home to wait. It was Friday afternoon and we did not want to go another weekend without gas! He showed up at about 6pm and got us fixed right up. He said lines are snapping left and right in our city and he had been called out on 3 just that day! He also said that when people ask him what plumber to use he says, "I can't tell them who they should use, but I tell them who they shouldn't use and that is John Moore! Call John and pay more!" He also said the guy that had come out the night before will do ANYTHING to get out of working and there was no reason he couldn't have reattached the meter with the trench open. Siiiigh. More incompetence. It is all good, though, because we have gas again...after 16 days without it! A hot shower in my own home has never been as luxurious as it was last night! :)
KayTar + Nexium
KayTar started Nexium 2 days ago and it has been encouraging so far! The first day, she ate 2 pieces of bacon, most of her Pringles, an entire hot dog (hold the bun) and asked for a second at lunch, 3 mini-popsicles, and 2 still-frozen nuggets at dinner! This morning she has already had 2 pieces of bacon, a jar of baby food peas, 4 pepperoni, and a mini-popsicle. She told me that she hasn't thrown up in her mouth for 2 days! :) I'm feeling very hopeful about this medication switch!
Insurance Drama
Last Friday, I spent almost the entire day on the phone.The insurance issue with the new clinic and her current health plan has reached an impasse and we are going to have to switch. I first called the state to inquire about how I would go about changing health plans, since we never have, and I was assured that it was a simple phone call and we would be squared away. But before I made the switch, I called EVERYONE to be sure they all take the prospective new plan. I talked to probably 25 customer service reps...every clinic, doctor, pharmacy, HHC, therapist that KayTar receives services from was on my list. They all accept this health plan, so I called the state back. This time I was told we were no longer able to switch, because we had been on our current plan more than 90 days. We could appeal this decision in writing, but even if approved it wouldn't go into effect until after the first of October (at the earliest). Siiiiigh. I told her what the previous rep had told me and she said that was not the case. So I said okay, and then called back to try to reach the original rep. Except, you can't actually do that. They give you rep ID numbers, but they are useless because they do not have extension or someway to connect to do a specific rep. So I used this third rep as a tie breaker of sorts (or a tie creator? seems like the phrasing here is wrong, but you get the idea), and she said the same thing as the second rep, so I submitted a letter in writing...now we wait! As a little bonus to this story, I received a letter in the mail yesterday saying that the kids might lose insurance coverage at the end of October. I promptly had a series of small heart attacks while dialing the state HHSC to find out what was going on...only to be told that the letter was sent in error and we would be receiving a corrected letter in about 2 days. WHEW!
KayTar + head pains
Poor KayTar is having a lot of headaches/pains lately. She had at least 2 last week and one every day this week. We were talking about it a couple of days ago and she said, "I have head pain EVERY day." but she said it with a DUH tone of voice, like this was obviously something I should already know. They are not incapacitating and often she just wants an ice pack, but it still doesn't sit right with me. She complains of pain over her right eye on her forehead and in her eyes themselves. She has an ophtho check on the 27th, so if it is a glasses issue, we should know then. Otherwise, I'm not sure what is going on! Maybe sinus pain from allergies? We have her on Benadryl and Claritin, and her allergies seem well-controlled. Maybe headaches from transient desats? I honestly don't know. We see pulmonology on October 11th (since we had to push it back due to the insurance drama) and we see the new geneticist that day, too. Hopefully one of her doctors will have a helpful suggestion!
KayTar + OT
Yesterday was KayTar's first OT appointment in over a month! She was doing feeding therapy and with the gut changes and decreased feeding tolerance, we just took a break while we went through testing for that. Because it still isn't under control, we are taking a break from feeding OT and switching to more traditional OT for her fine motor strength and coordination. We have known for sometime that she has weaker hands than her peers, but we just have not focused on it until now. The therapist did testing with KayTar yesterday and WHOA, her hands are weak! She was tested with a hand gripper equipped with some sort of pressure guage, and she scored a 6 with one hand and a 7 with the other...normal for her age is 28-29! That is significant weakness. That combined with the inefficient way she grips her pencil and the EXTREME force she uses to push the pencil to the paper, it is no wonder she fatigues so easy during writing assignments. Until we are able to get her back to "regular" feeds, we will be doing all fine motor work in OT, and if we get her gut issues under control, we will add in some texture/feeding work, too...just not as much as before. Oh, and the OT really noted her new breathing pattern, too, and commented it was not nearly that bad the last time she had seen her. She wants the pulmonologist to make sure things are okay with her airway before we start back with the feeding stuff, too.
Showing posts with label eval. Show all posts
Showing posts with label eval. Show all posts
Saturday, September 17, 2011
Monday, May 05, 2008
The review meeting
On Friday, I had the final meeting with KayTar's evaluation committee. When I arrived, the SLP said, "Oh, this is going to be a totally different experience for us! You already know everything we are about to tell you, but most parents don't have a clue." I suspect the meeting can be quite an upsetting affair for those parents, the ones who are referred to the special education program but feel it is a mere formality stemming from undue concerns, and are sure their children will be turned away. I'm not one of those parents, because my biggest concern has been KayTar NOT getting services we already know she needs. As wonderfully as this experience has gone (minus the timing snafus) I have been a little nervous that KayTar just won't be getting what she needs, and because of the insurance situation, school therapies are currently her only option. Thankfully, my concerns seem to be unfounded.
The team is recommending the 4 day per week/3 hour per day community-based (inclusion) preschool class. She will be with a group of 6 typically developing children and 5 other not-so-typically developing children. She will have a normal preschool teacher and a special education teacher. She will receive OT in the classroom. Her special education teacher will have speech goals to work on with her through the year. They are recommending two adaptive technologies for her, a wagon/stroller for when the class has to walk places, because KayTar fatigues easily and cannot keep up, and a picture system to help ease transitions. These are only the recommendations, they still have to be approved by the ARD committee, but I feel pleased with the recommendations. We will have her ARD in a month, and she will start school in the fall. I'm a little diappointed that she will be without services all this time, but I think the summer will give her some good time for growth and hopefully it will ease her transition, as everyone has concerns about her ability to transition easily. The psychologist said it will likely be difficult for her, but in the long run it will be a very good thing. I think so, too. We might start going to church to help her get used to being with non-familial caregivers and groups of peers in the meantime.
The evaluation team also gave me a LARGE packet of testing results, which I will sift through and post highlights from later in the week for your perusal (and my record keeping), so stay tuned if you are into that sort of thing. Sneak peek, she did test WELL within the autism range on one tests (GARS-2), and she did NOT test in the autism range on another test (ADOS). They are not diagnosing autism at this time, because well think that her autistic quirks are caused by the larger neurological picture, rather than a specific ASD, but it is something that will continue to be evaluated as she grows, and her tendencies are well documented. All in all, it was an excellent meeting.
(excuse the rashy arms, we just can't seem to shake it! it has started to spread to her cheeks, too. bummer.)
The team is recommending the 4 day per week/3 hour per day community-based (inclusion) preschool class. She will be with a group of 6 typically developing children and 5 other not-so-typically developing children. She will have a normal preschool teacher and a special education teacher. She will receive OT in the classroom. Her special education teacher will have speech goals to work on with her through the year. They are recommending two adaptive technologies for her, a wagon/stroller for when the class has to walk places, because KayTar fatigues easily and cannot keep up, and a picture system to help ease transitions. These are only the recommendations, they still have to be approved by the ARD committee, but I feel pleased with the recommendations. We will have her ARD in a month, and she will start school in the fall. I'm a little diappointed that she will be without services all this time, but I think the summer will give her some good time for growth and hopefully it will ease her transition, as everyone has concerns about her ability to transition easily. The psychologist said it will likely be difficult for her, but in the long run it will be a very good thing. I think so, too. We might start going to church to help her get used to being with non-familial caregivers and groups of peers in the meantime.
The evaluation team also gave me a LARGE packet of testing results, which I will sift through and post highlights from later in the week for your perusal (and my record keeping), so stay tuned if you are into that sort of thing. Sneak peek, she did test WELL within the autism range on one tests (GARS-2), and she did NOT test in the autism range on another test (ADOS). They are not diagnosing autism at this time, because well think that her autistic quirks are caused by the larger neurological picture, rather than a specific ASD, but it is something that will continue to be evaluated as she grows, and her tendencies are well documented. All in all, it was an excellent meeting.
Tuesday, April 15, 2008
Unofficially.
Last Friday, we had the final portion of KayTar's autism evaluation. No really, the LAST portion. For real this time. I secretly think they want to adopt her as their mascot and that is why we keep getting called back. Afterwards, I asked if there was anything they could tell me before the reports were finalized. I haven't asked this before. I'm content to let them do their job, draw their own conclusions without my questioning and interference, but since it was the last time I'd see them before her ARD, I thought I might as well see what I could find out.
They said, unofficially of course, that they are not pursuing an ASD diagnosis for KayTar. Although she clearly exhibits a number of autistic behaviors, they are secondary to the overall neurological picture and until the neurological problems are diagnosed, they are reluctant to give her an ASD label. I completely agree with this reasoning, however, an ASD diagnosis would have been helpful in facilitating appropriate services. Bummer.
The SLP said that although she has significant speech delays, they are not the sort that are easily captured on the results of the diagnostic tests. She said KayTar is consistently testing at or above age level, which is wonderful, except that everyone agrees that there are significant speech problems and she needs therapy. It is just incredibly difficult to show this in black and white on a standardized evaluation form. KayTar's language delays are largely in pragmatics. I think the SLP might even be pursuing a diagnosis of Semantic-Pragmatic Disorder which is related to hyperlexia, SURPRISE! So, she is attempting to work this angle and use it to get KayTar the services she NEEDS, but nothing is for sure because KayTar's problems exist in a gray area, as always. You just can't put her into a nice little diagnostic box and the system thrives on tidy little boxes.
The problem is, KayTar doesn't ONLY need speech therapy. She needs occupational (for her sensory and feeding problems) and physical (for her tone and gait issues). I'm worried that she isn't going to be getting what she needs. Because the evaluation team is so thorough and have identified what she needs, they are really trying to manipulate the system so that it can help her, regardless of her out of the box status. There is something called an OHI (other health impaired) they are pursuing to help her qualify for services and appropriate placement. They sent the form to her neurologist who put "developmentally delayed" and sent it back, because for fear of the dreaded threat of "pre-existing conditions" and ridiculous insurance situation everyone has been told not to write anything specific on her paperwork. So in this situation, it was a terrible catch-22 that would have left her without services OR insurance. Dude. But I took the form to the pediatrician last week and I think that the information she gave will be adequate for the OHI. I hope.
So the bottom line is the story of our lives really. No one knows what's going on with our little dear. The fact that she has no diagnosis isn't just an inconvenience, it might just keep her from getting services that everyone agrees that she needs. She's an anomaly. She's brilliant. She's delayed. She's above age level. She's below age level. She can read from my textbooks. She can't relate simple experiences to me. We just don't know. Almost two years from the start of this and endless rounds of testing later, and we just don't know. I'd like to say it doesn't matter, that after this summer's debacle of having our hopes raised (I can't even look at that post without my stomach turning inside out) and dashed we had given up on ever discovering what the larger picture is for our sweet girl, and maybe we have. But I still think of it. Dream of it. Imagine what it might be like to know, really know. But I no longer expect it. She is who she is and I couldn't be more pleased with that, but the questions without answers circle in my mind sometimes. Who will she be in a year? In five? In ten? Will she continue to thrive? Will school be too hard for her? Are there more surprised up ahead? We just don't know. We know her, who she is today, who she was yesterday, and really, that is enough for us...but sometimes, times like this, I just wish we knew a little extra.
Last night, Josh and I were lying in bed watching Mystery Diagnosis. The woman had been to doctor after doctor and been told everything was fine, that the debilitating pain and lethargy was psychological, and finally they discovered she had Hashimoto's Thyroiditis. I said, "I hope she wrote letters to all those doctors and told them what they dismissed so carelessly." And Josh said, sarcastically, "Oh, like you did to IdiotPediatrician?" and I said, "If we ever get a diagnosis, I will. We'll be on this show and I'll send him a letter saying 'Please watch Mystery Diagnosis on such and such date, you'll be the idiot doctor I talk about in the beginning. Enjoy.'"
One day, I really hope I get to send that letter.
They said, unofficially of course, that they are not pursuing an ASD diagnosis for KayTar. Although she clearly exhibits a number of autistic behaviors, they are secondary to the overall neurological picture and until the neurological problems are diagnosed, they are reluctant to give her an ASD label. I completely agree with this reasoning, however, an ASD diagnosis would have been helpful in facilitating appropriate services. Bummer.
The SLP said that although she has significant speech delays, they are not the sort that are easily captured on the results of the diagnostic tests. She said KayTar is consistently testing at or above age level, which is wonderful, except that everyone agrees that there are significant speech problems and she needs therapy. It is just incredibly difficult to show this in black and white on a standardized evaluation form. KayTar's language delays are largely in pragmatics. I think the SLP might even be pursuing a diagnosis of Semantic-Pragmatic Disorder which is related to hyperlexia, SURPRISE! So, she is attempting to work this angle and use it to get KayTar the services she NEEDS, but nothing is for sure because KayTar's problems exist in a gray area, as always. You just can't put her into a nice little diagnostic box and the system thrives on tidy little boxes.
The problem is, KayTar doesn't ONLY need speech therapy. She needs occupational (for her sensory and feeding problems) and physical (for her tone and gait issues). I'm worried that she isn't going to be getting what she needs. Because the evaluation team is so thorough and have identified what she needs, they are really trying to manipulate the system so that it can help her, regardless of her out of the box status. There is something called an OHI (other health impaired) they are pursuing to help her qualify for services and appropriate placement. They sent the form to her neurologist who put "developmentally delayed" and sent it back, because for fear of the dreaded threat of "pre-existing conditions" and ridiculous insurance situation everyone has been told not to write anything specific on her paperwork. So in this situation, it was a terrible catch-22 that would have left her without services OR insurance. Dude. But I took the form to the pediatrician last week and I think that the information she gave will be adequate for the OHI. I hope.
So the bottom line is the story of our lives really. No one knows what's going on with our little dear. The fact that she has no diagnosis isn't just an inconvenience, it might just keep her from getting services that everyone agrees that she needs. She's an anomaly. She's brilliant. She's delayed. She's above age level. She's below age level. She can read from my textbooks. She can't relate simple experiences to me. We just don't know. Almost two years from the start of this and endless rounds of testing later, and we just don't know. I'd like to say it doesn't matter, that after this summer's debacle of having our hopes raised (I can't even look at that post without my stomach turning inside out) and dashed we had given up on ever discovering what the larger picture is for our sweet girl, and maybe we have. But I still think of it. Dream of it. Imagine what it might be like to know, really know. But I no longer expect it. She is who she is and I couldn't be more pleased with that, but the questions without answers circle in my mind sometimes. Who will she be in a year? In five? In ten? Will she continue to thrive? Will school be too hard for her? Are there more surprised up ahead? We just don't know. We know her, who she is today, who she was yesterday, and really, that is enough for us...but sometimes, times like this, I just wish we knew a little extra.
Last night, Josh and I were lying in bed watching Mystery Diagnosis. The woman had been to doctor after doctor and been told everything was fine, that the debilitating pain and lethargy was psychological, and finally they discovered she had Hashimoto's Thyroiditis. I said, "I hope she wrote letters to all those doctors and told them what they dismissed so carelessly." And Josh said, sarcastically, "Oh, like you did to IdiotPediatrician?" and I said, "If we ever get a diagnosis, I will. We'll be on this show and I'll send him a letter saying 'Please watch Mystery Diagnosis on such and such date, you'll be the idiot doctor I talk about in the beginning. Enjoy.'"
One day, I really hope I get to send that letter.
Tuesday, March 11, 2008
My kid IS weird
Today was part one of KayTar's autism evaluation through the district. I think I feel a bit differently about these little evaluations than a lot of other parents. Generally, people seem to be uncomfortable with the idea of their child be judged or graded for defects or deficits. Many parents shy away from labels and limits, they don't like to watch their children be scrutinized. But me? I love it, in a strange way. I love watching KayTar and the evaluators interact. I love listening to her answer questions (in sometimes hilarious ways, "Where do you sleep?" "IN A BOX!") or throw out her little quotes and watch the evaluators react ("This bowling ball is CHEAP!"). I love the way she always, always gets them to smile and laugh (The SLP told me that if she had her at home she'd never stop smiling). I love the way she charms them. And honestly, I love having my suspicions confirmed.
KayTar is one hot mess of a puzzle, not only medically, but also behaviorally. She is not a neat and tidy package of anything. As her mother, I observe a great many things that the general public misses, even trained professionals miss these things if they don't interact with her for adequate periods of time. I'm constantly dissecting things, researching things, wondering about behaviors and patterns...my brain is always processing some little tidbit of information I've gleaned from her. It can be tiring and a little maddening, too, especially when so many other people miss it at first glance. But to sit in these meetings (which I am an observer for, not a participant) and see her do the same things for them and to watch them catch on to it, without me saying a word, is like one 4 hour long sigh of relief. They get it. They get her. They see the problem areas, the lack of understanding and comprehension, the inability to tell stories or join in socially, the way she tricks people with her speech, and so on. They know how she covers her deficits and they know how to get her to expose the problems. It is an amazing process to witness.
She did a great job today, she was exactly herself. She did well at the things she does well at (above age level for quite a bit of stuff) and she showed deficits where deficits are. I never felt like she behaved out of character or failed to do something she really can do, which means it was successful. I won't know anything solid for quite a while. We go back on Friday for a "play test". Today was formal evaluation testing, the next session is more play based. Then there is the home visit, then the Big Meeting, which is when we should know. I did ask the SLP, "So, did you see what you expected to see?" and she said "Yes." So, I suppose that is a good thing. I'm anxious to get the results, not because I'm afraid of what they might say, labels tell you nothing you don't already know, but because I am so curious about what they'll categorize it as. I'm pretty sure they won't call it KayTarosis, but I think it has a nice ring to it.
KayTar is one hot mess of a puzzle, not only medically, but also behaviorally. She is not a neat and tidy package of anything. As her mother, I observe a great many things that the general public misses, even trained professionals miss these things if they don't interact with her for adequate periods of time. I'm constantly dissecting things, researching things, wondering about behaviors and patterns...my brain is always processing some little tidbit of information I've gleaned from her. It can be tiring and a little maddening, too, especially when so many other people miss it at first glance. But to sit in these meetings (which I am an observer for, not a participant) and see her do the same things for them and to watch them catch on to it, without me saying a word, is like one 4 hour long sigh of relief. They get it. They get her. They see the problem areas, the lack of understanding and comprehension, the inability to tell stories or join in socially, the way she tricks people with her speech, and so on. They know how she covers her deficits and they know how to get her to expose the problems. It is an amazing process to witness.
She did a great job today, she was exactly herself. She did well at the things she does well at (above age level for quite a bit of stuff) and she showed deficits where deficits are. I never felt like she behaved out of character or failed to do something she really can do, which means it was successful. I won't know anything solid for quite a while. We go back on Friday for a "play test". Today was formal evaluation testing, the next session is more play based. Then there is the home visit, then the Big Meeting, which is when we should know. I did ask the SLP, "So, did you see what you expected to see?" and she said "Yes." So, I suppose that is a good thing. I'm anxious to get the results, not because I'm afraid of what they might say, labels tell you nothing you don't already know, but because I am so curious about what they'll categorize it as. I'm pretty sure they won't call it KayTarosis, but I think it has a nice ring to it.
Thursday, January 31, 2008
Rocked it
Oh, that KayTar. She's amazing. She did really well today, from what I gather. We were there for roughly 3 hours and while she was entertained/tested by six or so specialists, they took turns interviewing me and having me fill out paperwork. I didn't pay a whole lot of attention to how she was "performing" per say. But she was happy and attentive mostly and she stole their hearts with her adorable braininess. All of the evaluators were female and they all said, "We NEVER get little girls. We might get one girl for every ten boys we see." Her stripey sweater and curly blonde ponytail gave her major bonus points. ;) Nothing is finalized yet, and we aren't even to the point of discussing classroom placement, but this is the summary from thus far. For the record, I loved ALL of the evaluators. They were great with her and attentive and kind and it was a positive experience. For all the worries I've had about this process, thus far, I haven't been displeased a single time.
Let's start with OT. She had KayTar play with a variety of textures, including shaving cream. KayTar was NOT a fan, but she sat at the table and obligingly put her finger in. Then she asked to wash her hands for the rest of the time. When they ignored her (purposefully) she took one of their hands and wiped her hands clean using theirs. She was well-behaved, but clearly showed some strong sensory preferences. Her fine motor, though, is excellent as it always has been. She is recommending OT for sensory/feeding purposes, not fine motor purposes, which I wholeheartedly agree with.
The physical therapist was great. She took a lot of time asking me about KayTar and watched her in action and had her attempt a few things. She also took a good look at her feet and legs and strongly recommended seeing an orthopedist. She said if nothing else, KayTar needs orthotics in her shoes. She said once her feet are more supported, her joints and muscles might start to tighten a bit and her body will feel safer and more balanced. She said the hypermobile joints and hypotonia aren't helping her poor balance, which is perfectly logical and I kind of wish her old PT would have made these suggestions early. She is going to review the preschool curriculum and determine whether KayTar will be able to function well without PT services and do what will be required of her. She still isn't able to run or jump, and she won't walk on uneven terrain (grass, mulch, sand) so we'll see.
The SLP was with KayTar almost the entire time, making notes and checking her comprehension and the like. She spoke with me before and after and asked periodic questions in between. She picked up on some of Katie's canned answers and such, but because I was so busy talking with everyone, I don't know exactly how she did. I think she presented a pretty typical for her type of speech, although I don't think she did any echolalia or direct mimicry. For the most part, I think it was a very accurate picture.
She is going to have an autism evaluation with the school psychologist, who was in and out today, but not technically evaluating. We are totally on board with this, because so many of KayTar's quirks do fall in the spectrum. I'm actually looking forward to it, just to see what she has to say.
Otherwise, KayTar was polite and well mannered and an entertaining delight. They were enamored with her. She made her preferences clear, but was pretty even keeled. Unfortunately, that isn't always the case, but it sure makes for a wonderful first impression. They were excited that she knows so much and said that in many areas she is above age level. She has a memory like a steel trap and learns quickly. All in all, I think it went swimmingly. I hope that they saw enough of each side to place her properly and I am thrilled that she will be having a behavioral evaluation because I think at this point, lots of her delayed areas fall into that category. Her speech is quirky, her senses are quirky, her balance is quirky, her reading is a quirk all on its own. Cognitively, she's a little ahead of the game, I think. But behaviorally, I'm not sure where she falls.
Anyway, long story short, she was adorable and I think it went well. The next step is the autism evaluation and then the Big Meeting where we talk placement. I am happy to say, thus far, this is has been a very positive experience...nerves notwithstanding.
Now I must scamper off and take care of a few things before class tonight. Oh, and in case you are dying to know, I am a straight A student thus far. In Philosophy I have a perfect grade and my lowest grade overall is 95. I am pleased.
And hey! Look at this handsome guy!
I happened to have a photo befitting Theme Thursday and decided to play along since I'm double posting today. The theme is "Focus" and he certainly was focused, little tongue peeking out and all. Video games are serious business!
Let's start with OT. She had KayTar play with a variety of textures, including shaving cream. KayTar was NOT a fan, but she sat at the table and obligingly put her finger in. Then she asked to wash her hands for the rest of the time. When they ignored her (purposefully) she took one of their hands and wiped her hands clean using theirs. She was well-behaved, but clearly showed some strong sensory preferences. Her fine motor, though, is excellent as it always has been. She is recommending OT for sensory/feeding purposes, not fine motor purposes, which I wholeheartedly agree with.
The physical therapist was great. She took a lot of time asking me about KayTar and watched her in action and had her attempt a few things. She also took a good look at her feet and legs and strongly recommended seeing an orthopedist. She said if nothing else, KayTar needs orthotics in her shoes. She said once her feet are more supported, her joints and muscles might start to tighten a bit and her body will feel safer and more balanced. She said the hypermobile joints and hypotonia aren't helping her poor balance, which is perfectly logical and I kind of wish her old PT would have made these suggestions early. She is going to review the preschool curriculum and determine whether KayTar will be able to function well without PT services and do what will be required of her. She still isn't able to run or jump, and she won't walk on uneven terrain (grass, mulch, sand) so we'll see.
The SLP was with KayTar almost the entire time, making notes and checking her comprehension and the like. She spoke with me before and after and asked periodic questions in between. She picked up on some of Katie's canned answers and such, but because I was so busy talking with everyone, I don't know exactly how she did. I think she presented a pretty typical for her type of speech, although I don't think she did any echolalia or direct mimicry. For the most part, I think it was a very accurate picture.
She is going to have an autism evaluation with the school psychologist, who was in and out today, but not technically evaluating. We are totally on board with this, because so many of KayTar's quirks do fall in the spectrum. I'm actually looking forward to it, just to see what she has to say.
Otherwise, KayTar was polite and well mannered and an entertaining delight. They were enamored with her. She made her preferences clear, but was pretty even keeled. Unfortunately, that isn't always the case, but it sure makes for a wonderful first impression. They were excited that she knows so much and said that in many areas she is above age level. She has a memory like a steel trap and learns quickly. All in all, I think it went swimmingly. I hope that they saw enough of each side to place her properly and I am thrilled that she will be having a behavioral evaluation because I think at this point, lots of her delayed areas fall into that category. Her speech is quirky, her senses are quirky, her balance is quirky, her reading is a quirk all on its own. Cognitively, she's a little ahead of the game, I think. But behaviorally, I'm not sure where she falls.
Anyway, long story short, she was adorable and I think it went well. The next step is the autism evaluation and then the Big Meeting where we talk placement. I am happy to say, thus far, this is has been a very positive experience...nerves notwithstanding.
Now I must scamper off and take care of a few things before class tonight. Oh, and in case you are dying to know, I am a straight A student thus far. In Philosophy I have a perfect grade and my lowest grade overall is 95. I am pleased.
And hey! Look at this handsome guy!
I happened to have a photo befitting Theme Thursday and decided to play along since I'm double posting today. The theme is "Focus" and he certainly was focused, little tongue peeking out and all. Video games are serious business!
Here we go
Off to the Big Evaluation. I am so nervous. But hey, it is taking my mind off the food situation, so that's a plus, right?
Speaking of the food (oh God, here I go) yesterday she ate 3 shoestring potato bits and I am okay with it. No really, I sort of am. I just took a deep breath and let it go. 3 Pediasures, 1 milk, 3 teeny shoestring potatoes, and I, mostly did not care. So it was a good day, except for when I nearly panicked while grocery shopping. My thoughts looked something like this:
Oh! I'll buy [all this crap] and maybe she will eat!
Kyla, she WON'T eat and you're just going to be wasting money.
But what if she WILL eat, but I buy the wrong things and now she WON'T eat?
Kyla, don't do this.
[insert chest tightening up here] And then I put extra Pediasure in the cart decided to go stare at the dairy case, because she's never eaten cheese (unless you count that powdered parmesan, which I don't count as cheese) and therefore it is a neutral grocery store section. Deep breathing while counting cheese varieties can be very soothing, evidently. In case you're wondering, yeah, I'm aware this is making me a great big sized ball-o-crazy.
Anyway, back to today's obsession, the Eval. Wish us luck! I just hope they get to see KayTar in all her glorious KayTarosity. The whole package, so they can see her strengths and weaknesses and help us get her the perfect placement. She is thrilled because we are "Goin-a Kinnygarten cwassroom aday. Havin-a chairs! Mommy chair, Daddy chair, bwudda chair, baby chair! Family chairs! Oh my bueful family chairs!" Funny what kids get excited about.
Oh! She relayed a story yesterday! I left her with my mom for a bit to run an errand involving looooots of car time and when I got back she was in different pants. Our conversation went like this:
Me: KayTar, where are your pants?
KayTar: [touches her pants] Aigh hee-yah!
Me: Where are your brown pants?
KayTar: E's pants?!
Me: I know, those are E's pants, where are KayTar's BROWN pants?
KayTar: [looks in a circle, grabs her crotch for a second, then prolonged grunt of an audible pause] Pants! Ewwwww stinky! [holds out her hand, like my mom did when she changed her diaper presumably]
Me: Oh! You had a bad poop?
KayTar: Ewww stinky bad poop. E's WHITE pants.
And although I had to goad it out of her and infer certain things, and although she used mimcry (what my mom said/did) to tell me. She told me what happened to her pants! I was kind of thrilled, not only did I miss out on an "eww stinky bad poop" I got to hear about it from KayTar. A total win-win.
Alright, enough rambling. I must go get ready for the Big Eval. Wish us luck!
Speaking of the food (oh God, here I go) yesterday she ate 3 shoestring potato bits and I am okay with it. No really, I sort of am. I just took a deep breath and let it go. 3 Pediasures, 1 milk, 3 teeny shoestring potatoes, and I, mostly did not care. So it was a good day, except for when I nearly panicked while grocery shopping. My thoughts looked something like this:
Oh! I'll buy [all this crap] and maybe she will eat!
Kyla, she WON'T eat and you're just going to be wasting money.
But what if she WILL eat, but I buy the wrong things and now she WON'T eat?
Kyla, don't do this.
[insert chest tightening up here] And then I put extra Pediasure in the cart decided to go stare at the dairy case, because she's never eaten cheese (unless you count that powdered parmesan, which I don't count as cheese) and therefore it is a neutral grocery store section. Deep breathing while counting cheese varieties can be very soothing, evidently. In case you're wondering, yeah, I'm aware this is making me a great big sized ball-o-crazy.
Anyway, back to today's obsession, the Eval. Wish us luck! I just hope they get to see KayTar in all her glorious KayTarosity. The whole package, so they can see her strengths and weaknesses and help us get her the perfect placement. She is thrilled because we are "Goin-a Kinnygarten cwassroom aday. Havin-a chairs! Mommy chair, Daddy chair, bwudda chair, baby chair! Family chairs! Oh my bueful family chairs!" Funny what kids get excited about.
Oh! She relayed a story yesterday! I left her with my mom for a bit to run an errand involving looooots of car time and when I got back she was in different pants. Our conversation went like this:
Me: KayTar, where are your pants?
KayTar: [touches her pants] Aigh hee-yah!
Me: Where are your brown pants?
KayTar: E's pants?!
Me: I know, those are E's pants, where are KayTar's BROWN pants?
KayTar: [looks in a circle, grabs her crotch for a second, then prolonged grunt of an audible pause] Pants! Ewwwww stinky! [holds out her hand, like my mom did when she changed her diaper presumably]
Me: Oh! You had a bad poop?
KayTar: Ewww stinky bad poop. E's WHITE pants.
And although I had to goad it out of her and infer certain things, and although she used mimcry (what my mom said/did) to tell me. She told me what happened to her pants! I was kind of thrilled, not only did I miss out on an "eww stinky bad poop" I got to hear about it from KayTar. A total win-win.
Alright, enough rambling. I must go get ready for the Big Eval. Wish us luck!
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