Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Kim, I also have a second grade son with Charge. We don't have the same degree on differences from one day to the next but he definately has days when he is " on " and he amazes me with his abilities and then other days when I think he is clueless. I, like , believe a lot of it is neurological. He takes Ritalin at school and it is amazing how much this helps him stay on the task and able to process the information at hand. I know this is different than what you were talking about but it seems to fall in the same category of neuroligal oddities that Charge kids seem to have. Deedee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Kim- My daughter is also 8 and in 2nd grade. She's in a regular classroom with a 1:1, PT, OT, ST, hearing and vision services, and a deafblind consultant. Her vision loss and hearing loss are worse on the left and things are nearly normal on the right. Her fine and gross motor skills are weak. She's been doing very well academically but has begun to decline a bit this year. She's always been " quirky " -- with some autistic-like and OCD-ish behaviors. This year, those things are interfering with her ability to attend, focus, etc. I also notice problems with retaining and using what she's learned. We see the same inconsistency that you describe-- at one point she seems right on track and the next she can be way off base. No rhyme or reason to it. One moment the light bulb is bright as ever and the next it's dimmed. She's as smart as a whip so we think it's more of a neurological kind of thing. As if her neurons are firing well one moment and turn off another. I think something has challenged her system beyond its ability to cope so she's having trouble maintaining her focus and attention for the entire day and in all situations. When we do homework together, I can see that her gears just click in an unusual way. I'm a teacher so I know what it looks like when kids' brains are working, you know. Her thought processes are unlike anyone I've known. Given her sensory impairments and the skewed information she receives in all areas as well as her atypical childhood experiences, I can understand that to some degree. But I don't think it explains everything. We are seeing a pediatric neurodevelopmental psychologist to try to understand what's up and how we can work with it. We've had our initial consult. Our evals are the end of April with reports on the first Fri in May. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Kim, I think the learning issues are an area of impact that is just emerging. I am looking forward to hearing what the neuropsychologist discovers about Aubrie. We do talk on this list quite often about executive function difficulties in CHARGE - usually comes up in response to regulating one's state, but this also involves planning, judgement, decsion making and so on. We also talk about processing issues, this includes things like being able to make sense of what is seen or heard as well as working memory, short term memory, doing learning tasks that require " stacking " of skills in the brain and so on. Obviously these things show up more as a child moves up in grades - 3rd grade is a year there is a huge jump in complexity of learning, because now are using all the concepts and skills that were learned earlier and applying them in new ways. this makes it important that the school pay attention to these concerns with your son. As common as these occurances are in CHARGE, I would not allow a wait and see approach to see if he magically does better over time, but insist that he have testing done now. If they don't have someone who is qualified to understand the complexities, we can offer tips there as well. Some of these topics are addressed in a special edition of the American Journal of Medical Genetics, March 2005. You can access the articles from the CHARGE Syndrome Foundation website listed at the bottom of each post. Kim Lauger Mom to Dylan 9, Kayla 15, and Tyler who just turned 18. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Kim, I think the learning issues are an area of impact that is just emerging. I am looking forward to hearing what the neuropsychologist discovers about Aubrie. We do talk on this list quite often about executive function difficulties in CHARGE - usually comes up in response to regulating one's state, but this also involves planning, judgement, decsion making and so on. We also talk about processing issues, this includes things like being able to make sense of what is seen or heard as well as working memory, short term memory, doing learning tasks that require " stacking " of skills in the brain and so on. Obviously these things show up more as a child moves up in grades - 3rd grade is a year there is a huge jump in complexity of learning, because now are using all the concepts and skills that were learned earlier and applying them in new ways. this makes it important that the school pay attention to these concerns with your son. As common as these occurances are in CHARGE, I would not allow a wait and see approach to see if he magically does better over time, but insist that he have testing done now. If they don't have someone who is qualified to understand the complexities, we can offer tips there as well. Some of these topics are addressed in a special edition of the American Journal of Medical Genetics, March 2005. You can access the articles from the CHARGE Syndrome Foundation website listed at the bottom of each post. Kim Lauger Mom to Dylan 9, Kayla 15, and Tyler who just turned 18. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Kim, I totally agree with you on all of that but have to add a warning. A WARNING actually. Testing only shows what the evaluator is able to show. I dismissed ALL testing and their results and went with running records for Patty because the evaluators did not and could not have the ability to understand CHARGE and all of its complexities and impacts on Patty's learning. That included especially Psych. We did not have a neuropsych done due to her numerous disabilities. No one took ALL of her into consideration because they just couldn't. It was at Perkins where they found Patty's true learning potential, actually that that couldn't be defined except to say where she was performing and what her disability did to impact her learning. They saw her learning disabilities (they told the truth) but more than that-all they saw was possibilities. Choosing a psych, neuro psych should be done with incredibly careful consideration. I have to go to work. More on this later. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Kim, I totally agree with you on all of that but have to add a warning. A WARNING actually. Testing only shows what the evaluator is able to show. I dismissed ALL testing and their results and went with running records for Patty because the evaluators did not and could not have the ability to understand CHARGE and all of its complexities and impacts on Patty's learning. That included especially Psych. We did not have a neuropsych done due to her numerous disabilities. No one took ALL of her into consideration because they just couldn't. It was at Perkins where they found Patty's true learning potential, actually that that couldn't be defined except to say where she was performing and what her disability did to impact her learning. They saw her learning disabilities (they told the truth) but more than that-all they saw was possibilities. Choosing a psych, neuro psych should be done with incredibly careful consideration. I have to go to work. More on this later. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 I find it hard to believe that any child with CHARGE would not qualify for assistance in relation to being developmentally delayed. My 7 year old daughter is very high functioning, but due to her sensory loss alone, she is definately delayed, even if it's something you wouldn't notice upon meeting her. It sounds as if you're dealing with professionals that don't necessarily " get it " , as we like to say here on the list. I hope you can recieve better support on this level. Jeanie Colp mom to MacKenzie 7 CHARGE, Tyler 14 & Zachary 11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 I find it hard to believe that any child with CHARGE would not qualify for assistance in relation to being developmentally delayed. My 7 year old daughter is very high functioning, but due to her sensory loss alone, she is definately delayed, even if it's something you wouldn't notice upon meeting her. It sounds as if you're dealing with professionals that don't necessarily " get it " , as we like to say here on the list. I hope you can recieve better support on this level. Jeanie Colp mom to MacKenzie 7 CHARGE, Tyler 14 & Zachary 11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 Bonnie - Thanks for stepping in, that's where the commnet about can offer tips if they don't have anyone qualified to test comment came in - knew someone else could fill in the details there. the typical school evaluation will not equate to a true neuropsych eval and as Michele did you must find someone who looks at the complexitites of CHARGE. Kim > Kim, > > I totally agree with you on all of that but have to add a warning. A WARNING > actually. Testing only shows what the evaluator is able to show. > > I dismissed ALL testing and their results and went with running records for > Patty because the evaluators did not and could not have the ability to > understand CHARGE and all of its complexities and impacts on Patty's learning. That > included especially Psych. We did not have a neuropsych done due to her > numerous disabilities. No one took ALL of her into consideration because they just > couldn't. > > It was at Perkins where they found Patty's true learning potential, actually > that that couldn't be defined except to say where she was performing and what > her disability did to impact her learning. They saw her learning disabilities > (they told the truth) but more than that-all they saw was possibilities. > > Choosing a psych, neuro psych should be done with incredibly careful > consideration. > > I have to go to work. > > More on this later. > > > Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 Bonnie - Thanks for stepping in, that's where the commnet about can offer tips if they don't have anyone qualified to test comment came in - knew someone else could fill in the details there. the typical school evaluation will not equate to a true neuropsych eval and as Michele did you must find someone who looks at the complexitites of CHARGE. Kim > Kim, > > I totally agree with you on all of that but have to add a warning. A WARNING > actually. Testing only shows what the evaluator is able to show. > > I dismissed ALL testing and their results and went with running records for > Patty because the evaluators did not and could not have the ability to > understand CHARGE and all of its complexities and impacts on Patty's learning. That > included especially Psych. We did not have a neuropsych done due to her > numerous disabilities. No one took ALL of her into consideration because they just > couldn't. > > It was at Perkins where they found Patty's true learning potential, actually > that that couldn't be defined except to say where she was performing and what > her disability did to impact her learning. They saw her learning disabilities > (they told the truth) but more than that-all they saw was possibilities. > > Choosing a psych, neuro psych should be done with incredibly careful > consideration. > > I have to go to work. > > More on this later. > > > Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to > > > Quote Link to comment Share on other sites More sharing options...
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