Re: To Cochran - Re: LONG! /was: Hello, I'm returning to Ohio with my autisitc son - resource info requested.

[Guest guest]

Thanks, n for your consideration of my post. I know that dx's can change depending on who you talk to, but, to be truly hyperlexic, you have to have the high reading without the comprehension, and her comprehension is good, I've tested that myself.

Also, the verbal apraxia I spoke of was just a splinter skill, where early on, at 2.5 she had this odd, round about way of telling you how she was. She would ask you to ask her how she was doing. Only then could she tell you. I shouldn't have said verbal apraxia as that conjurs up an image of child who has difficulty pronouncing or getting out words, and she had great articulation, just had some verbal planning problems, I think. She did that for a little while and then I just started saying "Just tell me how you are doing" and she did, and it kind of faded. Last we saw of that she was 3.9 and she is now 5.4, so thinking that is gone.

We saw two drs at Akrons, one was the head of the neurological pediatric center, Dr. Dooby, I think. The other was a black woman dr, can't remember her name, she dx'd her with add. Dr. Dooby I wasn't terribly impressed with, although he did do a thorough examination, from what I could see. The woman dr, also did a good job, but as I said she was way more cooperative for them:-) What an angel to give us the hard time, right ?

Like I said, she was uncharacteristically talkative and cooperative when she was there and we were afraid to take her back, lest they think we were trying to find something wrong with her. But honestly, couldn't expect them to dx her with anything more as she was just sitting up there talking like a storm and drawing her little shapes like she had been doing it for most of her live. Don't you just love them?

Things about them change so quickly when they are little, she is doing much better in large groups, per her preK teacher. To be fair, it was a weird classroom, 18 kids, 14 boys!!, 2 of the 4 girls with moderate autism, and the other little girl was frequently absent. We are taking her for another evaluation on Tuesday, with a local psychologist, not for a dx, we know it is now mild add, but just to see if she would benefit from any medication for the add, which will start to bring her more problems in school and socially, if not corrected. I will mention the NVLD to the psychologist, as early on she could tell you what the emotional expressions were of other people, but does seem a little behind in understanding other's motives. She is just starting to comment on what other people's personalities are like, so that is probably delayed also.

Coming to the realization she is not like other kids, not in a bad or good way, but, in a way that she has a very high IQ, and when you have one gift, other skills are often a lot harder for you. Overly bright people are not the ones that are usually the life-of-the-party-types.

She has slowed down some in acquiring reading/math skills, but as it stands she will enter kindergarten reading at a solid 6th grade level and her math skills at on par with that. Noone here ever put any emphasis on reading beyond the normal toys you buy for your kids with the alphabet on them. We tried not to emphasize learning, but she was prewired for it.

We went to and Noble the other day and she was bugging me for some learn to speak French CD's. I finally relented, bought them, she took them home, popped them in the DVD, watched them for about 1/2 an hour and then proceeded to give my 4 years of high school French a run for my money. Regular kids don't do things like that. I'm grateful for the skills she has, but if I got to choose, I would rather she be more well-rounded, but we don't get to pick what they skills are or the ones they have trouble with. Who knows, I may have done a worse job.

Message -----

From: The Marotta Family

Sent: Sunday, May 07, 2006 3:22 PM

Subject: To Cochran - Re: [ ]/was: Hello, I'm returning to Ohio with my autisitc son - resource info requested.

Dear - I know you posted this months ago, but for a while there, I had no time to read emails, since I am taking an evening class, work full time and have 3 kids at home. I'm just now glancing over what I've skipped.

Have you ever considered hyperlexia? It's not an official diagnosis, but it can be related to the spectrum disorders and NVLD. There is a great group in Chicago - The Centers for Speech and Language Disorders - who are the experts on hyperlexia. We took Bobby there and they did a very thorough job of evaluating him and wrote an extensive report with suggestions for the school on how to teach him. It sounds like your daughter has hyperlexia, and I bet the CSLD would be able to find the "right" diagnosis for her so that your daughter could get the services and support she needs. www.csld.org.

Also, to read more on hyperlexia, try www.hyperlexia.org. Hyperlexia can be a stand alone diagnosis.

If I can ask, who at Akron Children's Hospital saw your child? We've been there and I can personally testify that while most dr.s at the NeuroDevelopmental Center are great, there is at least one who isn't as great as his reputation. At first, I thought it was us, but then on the akron ASA list, there was a plethora of parents who felt the same way as I do. Just want to make sure you saw one of the phenomenal physicians (Dr. or Dr. Delahunty or Dr. Sand-Loud).

Marotta

P.S. I'm sorry it took me so long to respond.

----- Original Message -----

From: Cochran

Sent: 3/20/2006 11:09:27 AM

Subject: Re: [ ]/was: Hello, I'm returning to Ohio with my autisitc son - resource info requested.

:

Ours was only ever dx'd with adhd. She had many, many more problems than that, verbal apraxia and sensory integration, fine and gross motor problems.

However, both times we took her up to Akron Children's Hospital for an evaluation, she did things we had never seen her do, answered questions perfectly, drew a square at 3.5 years. Reminded me of the times I have tried to have paranoid schizophrenics institutionalized. They come into court looking and sounding more sane than anyone else there, lol.

Honestly, we left there thinking we were crazy, and, after the second evaluatin when they looked at us with raised eyebrows and asked "Why are you back?" was afraid to take her back in case they would turn us in for Munchausen by Proxy.

As it stands now, after chelation, she would only barely meet the criteria for ADD, no more hyperactivity, but she appears to have trouble focusing in large groups where there is a LOT of noise, no problem in small groups. I have even seen her do well in large groups, so don't quite know what we will face when she starts to school. I looked at the ADD checklist and 5 or more, says they should be checked out for ADD, she met 4, maybe 5 critieria, so it is light.

Thinking we will try regular kindergarten, she is in regular preK preschool, with 14 other children, 11 of which are very rowdy boys (she likes them the best ;-) and see what we get. We have more time to chelate and are going to start antiviral treatment also. Then if she has too much trouble we will think of moving her to smaller, more intense schooling.

Trouble with her is this: and I do mean it is trouble, she taught herself to read at 2.5 years, she is now 5.2 years and reading at a 6th grade level. Her math skills are just as advanced. She knows how to tell time, understands fractions and knows her left from her right (something I only really got a couple of years ago). I have seen kids like this in school and it is a problem, believe me, just as much as if they are behind. I have no clue what they are going to do with her I think we will just sit down with the principal and tell her all; the good and the bad, wish them luck, support them and hope for the best. Any suggestions from anyone appreciated. Anyone ever see a kid like this?? Anyone??

Yes, let me know about future events.

[Guest guest]

- I gotta say I'm impressed with your little one! Makes one think that if she does have any difficulties due to her diagnosis, she'll be able to compensate if taught certain strategies, etc. Chris----- Original Message ----- From: Cochran Sent: Sunday, May 07, 2006 6:58 PMSubject: Re: To Cochran - Re: [ ]LONG! /was: Hello, I'm returning to Ohio with my autisitc son - resource info requested.Thanks, n for your consideration of my post. I know that dx's can change depending on who you talk to, but, to be truly hyperlexic, you have to have the high reading without the comprehension, and her comprehension is good, I've tested that myself. Also, the verbal apraxia I spoke of was just a splinter skill, where early on, at 2.5 she had this odd, round about way of telling you how she was. She would ask you to ask her how she was doing. Only then could she tell you. I shouldn't have said verbal apraxia as that conjurs up an image of child who has difficulty pronouncing or getting out words, and she had great articulation, just had some verbal planning problems, I think. She did that for a little while and then I just started saying "Just tell me how you are doing" and she did, and it kind of faded. Last we saw of that she was 3.9 and she is now 5.4, so thinking that is gone. We saw two drs at Akrons, one was the head of the neurological pediatric center, Dr. Dooby, I think. The other was a black woman dr, can't remember her name, she dx'd her with add. Dr. Dooby I wasn't terribly impressed with, although he did do a thorough examination, from what I could see. The woman dr, also did a good job, but as I said she was way more cooperative for them:-) What an angel to give us the hard time, right ? Like I said, she was uncharacteristically talkative and cooperative when she was there and we were afraid to take her back, lest they think we were trying to find something wrong with her. But honestly, couldn't expect them to dx her with anything more as she was just sitting up there talking like a storm and drawing her little shapes like she had been doing it for most of her live. Don't you just love them? Things about them change so quickly when they are little, she is doing much better in large groups, per her preK teacher. To be fair, it was a weird classroom, 18 kids, 14 boys!!, 2 of the 4 girls with moderate autism, and the other little girl was frequently absent. We are taking her for another evaluation on Tuesday, with a local psychologist, not for a dx, we know it is now mild add, but just to see if she would benefit from any medication for the add, which will start to bring her more problems in school and socially, if not corrected. I will mention the NVLD to the psychologist, as early on she could tell you what the emotional expressions were of other people, but does seem a little behind in understanding other's motives. She is just starting to comment on what other people's personalities are like, so that is probably delayed also. Coming to the realization she is not like other kids, not in a bad or good way, but, in a way that she has a very high IQ, and when you have one gift, other skills are often a lot harder for you. Overly bright people are not the ones that are usually the life-of-the-party-types. She has slowed down some in acquiring reading/math skills, but as it stands she will enter kindergarten reading at a solid 6th grade level and her math skills at on par with that. Noone here ever put any emphasis on reading beyond the normal toys you buy for your kids with the alphabet on them. We tried not to emphasize learning, but she was prewired for it. We went to and Noble the other day and she was bugging me for some learn to speak French CD's. I finally relented, bought them, she took them home, popped them in the DVD, watched them for about 1/2 an hour and then proceeded to give my 4 years of high school French a run for my money. Regular kids don't do things like that. I'm grateful for the skills she has, but if I got to choose, I would rather she be more well-rounded, but we don't get to pick what they skills are or the ones they have trouble with. Who knows, I may have done a worse job. Message ----- From: The Marotta Family Sent: Sunday, May 07, 2006 3:22 PMSubject: To Cochran - Re: [ ]/was: Hello, I'm returning to Ohio with my autisitc son - resource info requested.Dear - I know you posted this months ago, but for a while there, I had no time to read emails, since I am taking an evening class, work full time and have 3 kids at home. I'm just now glancing over what I've skipped. Have you ever considered hyperlexia? It's not an official diagnosis, but it can be related to the spectrum disorders and NVLD. There is a great group in Chicago - The Centers for Speech and Language Disorders - who are the experts on hyperlexia. We took Bobby there and they did a very thorough job of evaluating him and wrote an extensive report with suggestions for the school on how to teach him. It sounds like your daughter has hyperlexia, and I bet the CSLD would be able to find the "right" diagnosis for her so that your daughter could get the services and support she needs. www.csld.org. Also, to read more on hyperlexia, try www.hyperlexia.org. Hyperlexia can be a stand alone diagnosis. If I can ask, who at Akron Children's Hospital saw your child? We've been there and I can personally testify that while most dr.s at the NeuroDevelopmental Center are great, there is at least one who isn't as great as his reputation At first, I thought it was us, but then on the akron ASA list, there was a plethora of parents who felt the same way as I do. Just want to make sure you saw one of the phenomenal physicians (Dr. or Dr. Delahunty or Dr. Sand-Loud) Marotta P.S. I'm sorry it took me so long to respond. ----- Original Message ----- From: Cochran Sent: 3/20/2006 11:09:27 AM Subject: Re: [ ]/was: Hello, I'm returning to Ohio with my autisitc son - resource info requested.: Ours was only ever dx'd with adhd. She had many, many more problems than that, verbal apraxia and sensory integration, fine and gross motor problems. However, both times we took her up to Akron Children's Hospital for an evaluation, she did things we had never seen her do, answered questions perfectly, drew a square at 3.5 years. Reminded me of the times I have tried to have paranoid schizophrenics institutionalized. They come into court looking and sounding more sane than anyone else there, lol. Honestly, we left there thinking we were crazy, and, after the second evaluatin when they looked at us with raised eyebrows and asked "Why are you back?" was afraid to take her back in case they would turn us in for Munchausen by Proxy. As it stands now, after chelation, she would only barely meet the criteria for ADD, no more hyperactivity, but she appears to have trouble focusing in large groups where there is a LOT of noise, no problem in small groups. I have even seen her do well in large groups, so don't quite know what we will face when she starts to school. I looked at the ADD checklist and 5 or more, says they should be checked out for ADD, she met 4, maybe 5 critieria, so it is light. Thinking we will try regular kindergarten, she is in regular preK preschool, with 14 other children, 11 of which are very rowdy boys (she likes them the best ;-) and see what we get. We have more time to chelate and are going to start antiviral treatment also. Then if she has too much trouble we will think of moving her to smaller, more intense schooling. Trouble with her is this: and I do mean it is trouble, she taught herself to read at 2.5 years, she is now 5.2 years and reading at a 6th grade level. Her math skills are just as advanced. She knows how to tell time, understands fractions and knows her left from her right (something I only really got a couple of years ago). I have seen kids like this in school and it is a problem, believe me, just as much as if they are behind. I have no clue what they are going to do with her I think we will just sit down with the principal and tell her all; the good and the bad, wish them luck, support them and hope for the best. Any suggestions from anyone appreciated. Anyone ever see a kid like this?? Anyone?? Yes, let me know about future events.