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Re: For Gloria

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Ila,

Thank you so much!! I have really been nervous today. I haven't

thought about it too much untl now.

It was really nice to hear from you.

How is your life going?

Big gentle hugs back at you!!

Gloria

>

> Gloria

>

> Wanted to wish you well as I know you are going in for surgery

soon, I

> believe maybe even tomorrow?

>

> Letting you know that we will be thinking of you and waiting to

hear how

> all went. As soon as you are able please let us know how you are.

>

> Big gentle hugs hon!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

>

> Ila in Maine mailto:sewcraftyila@...

> Owner:JEFLOVERS/

> MOD:sewmurkot/

> http://www.ChippewaCabinDesigns.com

>

>

> " If you want to sacrifice the admiration of many men for the

criticism

> of one, go ahead, get married. "

> Katharine Hepburn

>

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  • 2 months later...

Hi, he was a neuropsychologist/behavioral medicine specialist.

Dr. Richenel S. Ellecom, Psy.D.,Dr.P.H.

621 Plainfield Rd, Suite 110

Willowbrook, IL 60527

630/654-1377

He also works well with Anger management and behavior problems (even

very severe anger). I have recommended many people to him and they

have reported back with good experiences.

It is very difficult for people who see individuals like my daughter to

relate to her disability. At this point, with all the programs and

professional help she has had, is very verbal and very social

and can appear almost typical for the first minutes. Only with time

and relaxation, and increased social expectations, does the disability

start to show, where she can't hold up a conversation beyond the rote

questions and answers we have taught her. She can't process

information given, analyze it, and then respond in a reasonable

timeframe. While she is trying to come up with a response everyone

looks uncomfortable and decides she's not able to communicate and looks

to me to interpret. When she finally responds noone is listening

anymore. Then she gets frustrated and she retreats to her comfort

zone, which is giggling, hugging, kissing, saying " how's your day "

or " how are you doing " repeatedly to get attention. The one place she

communicates well is in Instant Messaging. Being able to read the

words and have time to think and type out a response works well for

her. She was in a program with others under the spectrum where they

were assigned a college student partner to IM with. The student she

was IM with said she would not have known it was an individual with a

disability if she hadn't been told!!!

I am a licensed foster parent and have cared for children with much

lower IQs who were much more capable than is. She is

functionally capable(with training) but does not initiate anything.

She has a job and her bosses all commend her for her work ethic, but do

say that she needs to be told what to do at all times and will come

back and ask what to do next and just stand and wait for more

direction. That's ok at the job but how would that work in independent

living? My walls are scarred from all the charts and diagrams we have

used over the years. The reality is that I still have to constantly

say " what's next on your chart? " or nothing will get done. I would

like every official or professional who has told me that she just needs

to focus, or that she will be just fine when she is older, or looks at

me like I have been negligent in my job raising her, to spend one week

in my house to see what it is like being the sole lifeline to a 19 year

old. Perhaps then they would see the need for support services.

Sorry I rant!!!! Thanks for listening. I do understand that I am

lucky and many have it much worse than I do, but her future is as

frightening as any other individual with a severe disability,

compounded with the fact that she is unable to make friends so there is

no support system to help her when I inevitably pass, unless society is

willing to help. That is what frightens me and keeps me struggling.

Gloria

>

>

> Gloria-

>

> Would you nid sharing the name of the Psychologist who helped you? My

> son has the same IQ profile as your daughter but has the same issues

> as your daughter. I think it's amazing and scary that the government

> could not see how much these kids struggle.

>

> Thanks.

>

> Chantelle

> cporter8404@...

>

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Gloria:

Very well said!

Your story illustrates perfectly the square peg/round hole nature of autism...most of our children do not fit neatly into the category called autism. And no one seems to understand that even the seemingly higher functioning individual has significant challenges. Gloria, your daughter sounds lovely, actually.

My son has very limited verbal ability but he has many ways of communicating; letter board and facilitation, augmentative communication device, some words, and of course gestures, eye gaze and last but not least, with behaviors. It is assumed that he is also mentally retarded, especially by those folks who don't take the time to learn how to communicate with him. But the fact is, he has pretty good comprehension of material that is read to him and he loves taking college level classes.

Thankfully, you have found a job site that works for her. I know of other highly capable individuals who have been let go because of lack of initiative, which is so common in individuals on the spectrum. Noah also has a very wonderful and tolerant work situation, at present.

Noah has taught me, repeatedly I might add, not to make assumptions about anyone and to accept everyone for the gifts and the strengths that they bring to the world.

We need to continue to educate our communities about how our children can make significant contributions with the proper support. Our advocacy and our belief in their ability is where our children's successes begin to become reality.

Ellen

Ellen Garber Bronfeldegskb@...

Re: For Gloria

Hi, he was a neuropsychologist/behavioral medicine specialist.Dr. Richenel S. Ellecom, Psy.D.,Dr.P.H.621 Plainfield Rd, Suite 110Willowbrook, IL 60527630/654-1377He also works well with Anger management and behavior problems (even very severe anger). I have recommended many people to him and they have reported back with good experiences.It is very difficult for people who see individuals like my daughter to relate to her disability. At this point, with all the programs and professional help she has had, is very verbal and very social and can appear almost typical for the first minutes. Only with time and relaxation, and increased social expectations, does the disability start to show, where she can't hold up a conversation beyond the rote questions and answers we have taught her. She can't process information given, analyze it, and then respond in a reasonable timeframe. While she is trying to come up with a response everyone looks uncomfortable and decides she's not able to communicate and looks to me to interpret. When she finally responds noone is listening anymore. Then she gets frustrated and she retreats to her comfort zone, which is giggling, hugging, kissing, saying "how's your day" or "how are you doing" repeatedly to get attention. The one place she communicates well is in Instant Messaging. Being able to read the words and have time to think and type out a response works well for her. She was in a program with others under the spectrum where they were assigned a college student partner to IM with. The student she was IM with said she would not have known it was an individual with a disability if she hadn't been told!!! I am a licensed foster parent and have cared for children with much lower IQs who were much more capable than is. She is functionally capable(with training) but does not initiate anything. She has a job and her bosses all commend her for her work ethic, but do say that she needs to be told what to do at all times and will come back and ask what to do next and just stand and wait for more direction. That's ok at the job but how would that work in independent living? My walls are scarred from all the charts and diagrams we have used over the years. The reality is that I still have to constantly say "what's next on your chart?" or nothing will get done. I would like every official or professional who has told me that she just needs to focus, or that she will be just fine when she is older, or looks at me like I have been negligent in my job raising her, to spend one week in my house to see what it is like being the sole lifeline to a 19 year old. Perhaps then they would see the need for support services.Sorry I rant!!!! Thanks for listening. I do understand that I am lucky and many have it much worse than I do, but her future is as frightening as any other individual with a severe disability, compounded with the fact that she is unable to make friends so there is no support system to help her when I inevitably pass, unless society is willing to help. That is what frightens me and keeps me struggling.Gloria>> > Gloria-> > Would you nid sharing the name of the Psychologist who helped you? My > son has the same IQ profile as your daughter but has the same issues > as your daughter. I think it's amazing and scary that the government > could not see how much these kids struggle.> > Thanks.> > Chantelle> cporter8404@...>

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Gloria,

Does Dr. Ellecom also do med management? Is that what "Dr. P.H." stands for? I googled him and he sounds great!

I am also in a very similar situation with my son as you are with your daughter. Steve is 21, and works part-time, has a diagnosis of Asperger's Syndrome and is also bipolar. The only way he has been able to hold his job is because he has a very understanding manager who also has a special needs child. Steve is intelligent and can "converse" for hours on subjects that interest him, but his activities of daily living have to be monitered constantly. I worry all the time about what will happen to Steve when I die. Steve's father is deceased and I am currently trying to get him on SSDI. Steve's stepfather is unable to deal with him, and wouldn't be able to handle him if something happened to me. The saddest thing is that Steve realizes this and has also expressed fear of the future without me.

Kris

Re: For Gloria

Hi, he was a neuropsychologist/behavioral medicine specialist.Dr. Richenel S. Ellecom, Psy.D.,Dr.P.H.621 Plainfield Rd, Suite 110Willowbrook, IL 60527630/654-1377He also works well with Anger management and behavior problems (even very severe anger). I have recommended many people to him and they have reported back with good experiences.It is very difficult for people who see individuals like my daughter to relate to her disability. At this point, with all the programs and professional help she has had, is very verbal and very social and can appear almost typical for the first minutes. Only with time and relaxation, and increased social expectations, does the disability start to show, where she can't hold up a conversation beyond the rote questions and answers we have taught her. She can't process information given, analyze it, and then respond in a reasonable timeframe. While she is trying to come up with a response everyone looks uncomfortable and decides she's not able to communicate and looks to me to interpret. When she finally responds noone is listening anymore. Then she gets frustrated and she retreats to her comfort zone, which is giggling, hugging, kissing, saying "how's your day" or "how are you doing" repeatedly to get attention. The one place she communicates well is in Instant Messaging. Being able to read the words and have time to think and type out a response works well for her. She was in a program with others under the spectrum where they were assigned a college student partner to IM with. The student she was IM with said she would not have known it was an individual with a disability if she hadn't been told!!! I am a licensed foster parent and have cared for children with much lower IQs who were much more capable than is. She is functionally capable(with training) but does not initiate anything. She has a job and her bosses all commend her for her work ethic, but do say that she needs to be told what to do at all times and will come back and ask what to do next and just stand and wait for more direction. That's ok at the job but how would that work in independent living? My walls are scarred from all the charts and diagrams we have used over the years. The reality is that I still have to constantly say "what's next on your chart?" or nothing will get done. I would like every official or professional who has told me that she just needs to focus, or that she will be just fine when she is older, or looks at me like I have been negligent in my job raising her, to spend one week in my house to see what it is like being the sole lifeline to a 19 year old. Perhaps then they would see the need for support services.Sorry I rant!!!! Thanks for listening. I do understand that I am lucky and many have it much worse than I do, but her future is as frightening as any other individual with a severe disability, compounded with the fact that she is unable to make friends so there is no support system to help her when I inevitably pass, unless society is willing to help. That is what frightens me and keeps me struggling.Gloria>> > Gloria-> > Would you nid sharing the name of the Psychologist who helped you? My > son has the same IQ profile as your daughter but has the same issues > as your daughter. I think it's amazing and scary that the government > could not see how much these kids struggle.> > Thanks.> > Chantelle> cporter8404@...>

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Kris, I understand your concern. I am a single parent also and that is my great fear.

I am lucky in that my daughter is relatively oblivious to the future concerns. She believes she will find a special someone and get married and have children. I hope she can find someone to share her life with, but I cannot see children. So, although she cries because she is lonely, she doesn't realize yet that these are probably the best years right now. That's the burden that we carry as parents. Anyway, we did not get meds from Dr. Ellecom as she has a psychiatrist. I do not know if he can dispense meds. He does share the office with a psychiatrist, however, but I never met him. I would call and ask. Good luck.

Re: For Gloria

Hi, he was a neuropsychologist/behavioral medicine specialist.Dr. Richenel S. Ellecom, Psy.D.,Dr.P.H.621 Plainfield Rd, Suite 110Willowbrook, IL 60527630/654-1377He also works well with Anger management and behavior problems (even very severe anger). I have recommended many people to him and they have reported back with good experiences.It is very difficult for people who see individuals like my daughter to relate to her disability. At this point, with all the programs and professional help she has had, is very verbal and very social and can appear almost typical for the first minutes. Only with time and relaxation, and increased social expectations, does the disability start to show, where she can't hold up a conversation beyond the rote questions and answers we have taught her. She can't process information given, analyze it, and then respond in a reasonable timeframe. While she is trying to come up with a response everyone looks uncomfortable and decides she's not able to communicate and looks to me to interpret. When she finally responds noone is listening anymore. Then she gets frustrated and she retreats to her comfort zone, which is giggling, hugging, kissing, saying "how's your day" or "how are you doing" repeatedly to get attention. The one place she communicates well is in Instant Messaging. Being able to read the words and have time to think and type out a response works well for her. She was in a program with others under the spectrum where they were assigned a college student partner to IM with. The student she was IM with said she would not have known it was an individual with a disability if she hadn't been told!!! I am a licensed foster parent and have cared for children with much lower IQs who were much more capable than is. She is functionally capable(with training) but does not initiate anything. She has a job and her bosses all commend her for her work ethic, but do say that she needs to be told what to do at all times and will come back and ask what to do next and just stand and wait for more direction. That's ok at the job but how would that work in independent living? My walls are scarred from all the charts and diagrams we have used over the years. The reality is that I still have to constantly say "what's next on your chart?" or nothing will get done. I would like every official or professional who has told me that she just needs to focus, or that she will be just fine when she is older, or looks at me like I have been negligent in my job raising her, to spend one week in my house to see what it is like being the sole lifeline to a 19 year old. Perhaps then they would see the need for support services.Sorry I rant!!!! Thanks for listening. I do understand that I am lucky and many have it much worse than I do, but her future is as frightening as any other individual with a severe disability, compounded with the fact that she is unable to make friends so there is no support system to help her when I inevitably pass, unless society is willing to help. That is what frightens me and keeps me struggling.Gloria>> > Gloria-> > Would you nid sharing the name of the Psychologist who helped you? My > son has the same IQ profile as your daughter but has the same issues > as your daughter. I think it's amazing and scary that the government > could not see how much these kids struggle.> > Thanks.> > Chantelle> cporter8404@...>

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