Re: late start on Autism looking for some support

[Guest guest]

Now that there isn't a worry about reputation because he is retired; I was wondering if Barb's daughters' Neuro was Dr. Gerald Erenberg? (Cleveland Clinic) He was a reputable autism neuro. We only saw him for a diagnosis only age 3. I'm only asking because the first time we saw him he only diagnosed Davey (age 2) with speech apraxia. Davey really could've been diagnosed with ASD that first visit at the age of 2., now that I know the whole scoop and what to look for in autism in young children I would've had to admit at that time he was autistic. I guess Erenburg was an "Old Rule" autism neuro. Back at that age of 2 years Davey wasn't stemming in the way we know autism. The next year I saw video clips of children just like Davey who was diagnosed with Autism and It blew my mind. I went back to Erenberg and told him what I had seen at that point he agreed and dx'd Davey with Autism. But it's like I had to know what autism was; to tell him??? He should've told me... Not sure if he wanted to delay an autism diagnoses based on my son's young age or what but speech apraxia is the biggest indicator of autism, and there are other subtle signs at that age if you know what to look for. (it seem's my son's autistic symptoms progressively got worse as he got older 3,4, rather than when he was younger.)

Sorry you're having such a rough time of it with a dx for your son. Barb mentioned a good neuro' Dr. Barry (Rainbows, Babies & Childrens-UH who sees patients at the westlake office, clauge rd off I90), I've heard good things about her.

So Barb, I'm just wondering if your daughter's neuro was Erenberg.

Yours, n

In a message dated 8/6/07 10:02:10 AM Eastern Daylight Time, ocecdbr@... writes:

Hi: My daughter was not diagnosed until her teens. Even though she was going to a well known neurologist (highly known in the area of autism) I believed he missed the boat with her. She was seeing him since the age of 3 she was always getting diagnosed with the symtpoms of autism. She was non-verbal (verbal dyspraxia), social anxiety, OCD, gastro issues, AD/HD, etc.

[Guest guest]

I agree that Dr. Barry is a great place to start. She is wonderful with children and parents and a thourough eval. will give you a great deal of importanrt info. Barrie Galvin is an OT on the Eastside and has a wealth of knowledge and a wonderful library that you can access by joining GERCF (The Galvin Education and Resource Center for Families)for the year. She also has an informative lecture series. You can get on their mailing list by calling 216-514-1600. I would also use the schools, if you can, for services once you have youe eval and gather a team together to see how to best support your son.

Good luck!

Take care,

ShariGet a sneak peek of the all-new AOL.com.

[Guest guest]

With all due respect n, although Doctors retire I do think their reputations should not be brought up where they cannot defend themselves and we should not get into harming them professionally or personally on this site. I totally agree that many professionals know so little about our children and how to help them, but I don't think it is constructive to air their names here.

Just my opinion.

Take care,

ShariGet a sneak peek of the all-new AOL.com.

[Guest guest]

Hi: My daughter was not diagnosed until her teens. Even though she was going to a well known neurologist (highly known in the area of autism) I believed he missed the boat with her. She was seeing him since the age of 3 she was always getting diagnosed with the symtpoms of autism. She was non-verbal (verbal dyspraxia), social anxiety, OCD, gastro issues, AD/HD, etc. Finally I bit the bullet and scheduled for a neuropsych eval with Dr. Barry (Rainbows, Babies & Childrens-UH - she sees patients at the westlake office, clauge rd off I90), She diagnosed my daughter with PDDNOS. The Ped nerologist my daughter had...I'm finding out this same neurologist seems to be missing the boat with this diagnosis (PDDNOS) - even with other families I've come across. The only suggestion I can say is that if you believe your son is showing symptons, get a second opinion and keep organized documentation. It

took about 10 years to finally get my daughters diagnosis (she will be 18 in October, diagnosed at 13) and since then it seems like services have been falling into place, epecially since now I'm looking at adult services. Be persistant - you know your child best.zudelkids <zudelkids@...> wrote: My son has always shown symptoms of being autistic but for some reason me being a mental health consumer had too many docs believing he must be depressed, OCD or goodness knows what else....He is now 16yo and

I'm still a mental health consumer. I would like to meet other parents, caregivers of kids who didn't get diagnosed until their teen years and how to get on the right foot as a parent. I live in Elyria...Lorain County...it would be great if someone in the Lorain County area was once in my shoes. But, I'll settle for any help offered.

[Guest guest]

n: No, my daughter's Neuro was not Dr. Erenberg. I really do not want to mention his name at this time because I agree with Shari, I do not want to stomp on anyone's reputation. Doctors are very unique to families, and even though I personally do not agree with a certain neuro, that doesn't mean 10 more will not come forward to sing his/her praises...and I respect that. I'll be at the ASGC support meeting tomorrow evening, if you'd like we can have a personal discussion at that time. It's frustrating enough at times being a parent of a young adult with autism. I try to share the experineces (good or bad) I personally go thru with my daughter to help other families and in the mean time try not for it to become a personal attack. Sometimes it hard to do and I need to bite my tongue at times! Yours, Barb 1@...

wrote: Now that there isn't a worry about reputation because he is retired; I was wondering if Barb's daughters' Neuro was Dr. Gerald Erenberg? (Cleveland Clinic) He was a reputable autism neuro. We only saw him for a diagnosis only age 3. I'm only asking because the first time we saw him he only diagnosed Davey (age 2) with speech apraxia. Davey really could've been diagnosed with ASD that first visit at the age of 2., now that I know the whole scoop and what to look for

in autism in young children I would've had to admit at that time he was autistic. I guess Erenburg was an "Old Rule" autism neuro. Back at that age of 2 years Davey wasn't stemming in the way we know autism. The next year I saw video clips of children just like Davey who was diagnosed with Autism and It blew my mind. I went back to Erenberg and told him what I had seen at that point he agreed and dx'd Davey with Autism. But it's like I had to know what autism was; to tell him??? He should've told me... Not sure if he wanted to delay an autism diagnoses based on my son's young age or what but speech apraxia is the biggest indicator of autism, and there are other subtle signs at that age if you know what to look for. (it seem's my son's autistic symptoms progressively got worse as he got older 3,4, rather than when he was younger.) Sorry you're having such a rough time of it with a dx for your son. Barb

mentioned a good neuro' Dr. Barry (Rainbows, Babies & Childrens-UH who sees patients at the westlake office, clauge rd off I90), I've heard good things about her. So Barb, I'm just wondering if your daughter's neuro was Erenberg. Yours, n In a message dated 8/6/07 10:02:10 AM Eastern Daylight Time, ocecdbrsbcglobal (DOT) net writes: Hi: My daughter was not diagnosed until her teens. Even though she was going to a well known neurologist (highly known in the area of autism) I believed he missed the boat with her. She was seeing him since the age of 3 she was always getting diagnosed with the symtpoms of autism. She was non-verbal (verbal dyspraxia), social anxiety, OCD, gastro issues, AD/HD, etc.

[Guest guest]

Hi Everyone,

I didn't mean any harm by bringing up that doc's name, just that he was more toward the old rule on autism, which to say was his choice. I thought he was a pleasant and very nice person, I probably should've added that as well. It's just that us parents when new to autism don't know what it is to look for. Anyway, I remember him as a fine person. Just was popping off in relation to the subject. I think it's good to have a more positive thought on topics and start from there. As you can read my previous post you'll see there was nothing to say he wasn't a fine person. I was only going by the topic. And of course, you're right, if it were to be we could always ask off-list who that doc was or not.

Yours, n

In a message dated 8/6/07 3:16:13 PM Eastern Daylight Time, ocecdbr@... writes:

n:

No, my daughter's Neuro was not Dr. Erenberg. I really do not want to mention his name at this time because I agree with Shari, I do not want to stomp on anyone's reputation. Doctors are very unique to families, and even though I personally do not agree with a certain neuro, that doesn't mean 10 more will not come forward to sing his/her praises...and I respect that. I'll be at the ASGC support meeting tomorrow evening, if you'd like we can have a personal discussion at that time. It's frustrating enough at times being a parent of a young adult with autism. I try to share the experineces (good or bad) I personally go thru with my daughter to help other families and in the mean time try not for it to become a personal attack. Sometimes it hard to do and I need to bite my tongue at times!

Yours, Barb

1@... wrote:

Now that there isn't a worry about reputation because he is retired; I was wondering if Barb's daughters' Neuro was Dr. Gerald Erenberg? (Cleveland Clinic) He was a reputable autism neuro. We only saw him for a diagnosis only age 3. I'm only asking because the first time we saw him he only diagnosed Davey (age 2) with speech apraxia. Davey really could've been diagnosed with ASD that first visit at the age of 2., now that I know the whole scoop and what to look for in autism in young children I would've had to admit at that time he was autistic. I guess Erenburg was an "Old Rule" autism neuro. Back at that age of 2 years Davey wasn't stemming in the way we know autism. The next year I saw video clips of children just like Davey who was diagnosed with Autism and It blew my mind. I went back to Erenberg and told him what I had seen at that point he agreed and dx'd Davey with Autism. But it's like I had to know what autism was; to tell him??? He should've told me... Not sure if he wanted to delay an autism diagnoses based on my son's young age or what but speech apraxia is the biggest indicator of autism, and there are other subtle signs at that age if you know what to look for. (it seem's my son's autistic symptoms progressively got worse as he got older 3,4, rather than when he was younger.)

Sorry you're having such a rough time of it with a dx for your son. Barb mentioned a good neuro' Dr. Barry (Rainbows, Babies & Childrens-UH who sees patients at the westlake office, clauge rd off I90), I've heard good things about her.

So Barb, I'm just wondering if your daughter's neuro was Erenberg.

Yours, n

In a message dated 8/6/07 10:02:10 AM Eastern Daylight Time, ocecdbr@... writes:

Hi: My daughter was not diagnosed until her teens. Even though she was going to a well known neurologist (highly known in the area of autism) I believed he missed the boat with her. She was seeing him since the age of 3 she was always getting diagnosed with the symtpoms of autism. She was non-verbal (verbal dyspraxia), social anxiety, OCD, gastro issues, AD/HD, etc.

[Guest guest]

Thanks n.

Well put.

Take care,

ShariGet a sneak peek of the all-new AOL.com.

[Guest guest]

There is a support group for Lorain County, here is their website:

http://www.ncoc-asa.org/

They meet in Avon Lake at the library. There is a meeting next Tuesday.

----- Original Message ----From: zudelkids <zudelkids@...> Sent: Monday, August 6, 2007 5:10:42 AMSubject: [ ] late start on Autism looking for some support

My son has always shown symptoms of being autistic but for some reason me being a mental health consumer had too many docs believing he must be depressed, OCD or goodness knows what else....He is now 16yo and I'm still a mental health consumer. I would like to meet other parents, caregivers of kids who didn't get diagnosed until their teen years and how to get on the right foot as a parent. I live in Elyria...Lorain County...it would be great if someone in the Lorain County area was once in my shoes. But, I'll settle for any help offered.

Sick sense of humor? Visit TV's Comedy with an Edge to see what's on, when.

[Guest guest]

Believe me I understand when you state you are just popping off in relation to the subject. It just shows how much frustration there is out there with families, when they know there is something not quite right or they see something odd but yet the medical community at times will poo-poo the parent as sometimes "Looking for a Mountain out of a Mole Hill" that is what my pediatrician related to me years ago. He also said I should leave the medical diagnosis up to him and I should not be playing doctor. That was 17 years ago and I'm so glad we have come a long way since then. I came from a generation that my parents took anyone's word of authority i.e. doctors, priests, etc as gold. I had to learn that when I'm looking at obtaining the services of anyone in the medical field, I'm the consumer. If I do not like what I'm paying for then I move on. It is like hiring contractors to remodel your house, if they do not

communicate with you to find out what your needs are and they are not meeting them, you fire them and hire someone who will. Just something to think about. Everyone have a nice day and stay dry! Barb 1@... wrote: Hi Everyone, I didn't mean any harm by bringing up that doc's name, just that he was more toward the old rule on autism, which to say was his choice. I thought he was a pleasant and very nice person, I probably should've

added that as well. It's just that us parents when new to autism don't know what it is to look for. Anyway, I remember him as a fine person. Just was popping off in relation to the subject. I think it's good to have a more positive thought on topics and start from there. As you can read my previous post you'll see there was nothing to say he wasn't a fine person. I was only going by the topic. And of course, you're right, if it were to be we could always ask off-list who that doc was or not. Yours, n In a message dated 8/6/07 3:16:13 PM Eastern Daylight Time, ocecdbrsbcglobal (DOT) net writes: n: No, my daughter's Neuro was not Dr. Erenberg. I really do not want to mention his name at this time because I agree with Shari, I do not want to stomp on anyone's reputation. Doctors are very unique to families, and even

though I personally do not agree with a certain neuro, that doesn't mean 10 more will not come forward to sing his/her praises...and I respect that. I'll be at the ASGC support meeting tomorrow evening, if you'd like we can have a personal discussion at that time. It's frustrating enough at times being a parent of a young adult with autism. I try to share the experineces (good or bad) I personally go thru with my daughter to help other families and in the mean time try not for it to become a personal attack. Sometimes it hard to do and I need to bite my tongue at times! Yours, Barb 1wmconnect wrote: Now that there isn't a worry about reputation because he is retired; I was wondering if Barb's daughters' Neuro was Dr. Gerald Erenberg? (Cleveland Clinic) He was a reputable autism neuro. We only saw him for a diagnosis only age 3. I'm only asking because the first time we saw him he only diagnosed Davey (age 2) with speech apraxia. Davey really could've been diagnosed with ASD that first visit at the age of 2., now that I know the whole scoop and what to look for in autism in young children I would've had to admit at that time he was autistic. I guess Erenburg was an "Old Rule" autism neuro. Back at that age of 2 years Davey wasn't stemming in the way we know autism. The next year I saw video clips of children just like Davey who was diagnosed with Autism and It blew my mind. I went back to Erenberg and told him what I had seen at that point he agreed and dx'd

Davey with Autism. But it's like I had to know what autism was; to tell him??? He should've told me... Not sure if he wanted to delay an autism diagnoses based on my son's young age or what but speech apraxia is the biggest indicator of autism, and there are other subtle signs at that age if you know what to look for. (it seem's my son's autistic symptoms progressively got worse as he got older 3,4, rather than when he was younger.) Sorry you're having such a rough time of it with a dx for your son. Barb mentioned a good neuro' Dr. Barry (Rainbows, Babies & Childrens-UH who sees patients at the westlake office, clauge rd off I90), I've heard good things about her. So Barb, I'm just wondering if your daughter's neuro was Erenberg. Yours, n In a message dated 8/6/07 10:02:10 AM Eastern Daylight Time, ocecdbrsbcglobal (DOT) net writes: Hi: My daughter was not diagnosed until her teens. Even though she was going to a well known neurologist (highly known in the area of autism) I believed he missed the boat with her. She was seeing him since the age of 3 she was always getting diagnosed with the symtpoms of autism. She was non-verbal (verbal dyspraxia), social anxiety, OCD, gastro issues, AD/HD, etc.