Re: AS and depression - Sylvia (was Re: OTRS - Sylvia)

[Guest guest]

Sylvia,

I'm pretty sure administration of the WAIS isn't going to tell you much you don't already know. In terms of knowing HOW she thinks, a more appropriate evaluation with instruments the folks are likely to have at hand would be the Woodcock series of tests, some of which give a pretty good indication of processing delays and cognitive problem-solving challenges. Unfortunately, even the Woodcock J isn't really helpful, because it, like most such tests, is likely to focus on deficits and what your daughter can't do.

I do recommend your waiting until October when you'd be eligible for different, hopefully more comprehensive and meaningful testing. What you want is a strength-based neuropsychological full adult functional evaluation. You've mentioned that your daughter has already had some disappointing experience in higher education and difficulties at work in an office setting. Rather than subject her to more frustrating "take a stab" experiments typical for young adults but to which she's had an adverse response, consider using the time between "now" and October -- only a month or so -- to search for a neuropsychologist whose tests and measures are designed to produce a strength-based evaluation that can be used by support persons for your daughter of all kinds.

One of the challenges you most likely face is in working out your notion of what your guardianship of her involves. There are the independent living concerns you allude to, but much of where "both of you" are right now is in dancing around boundaries. She's just at that awkward age -- which can be prolonged for a late-diagnosed near adult young person -- where she's testing all kinds of limits, and it might be helpful for you to schedule some private time, for yourself, with a social worker or similarly trained counselor experienced with the kinds of issues you face as your daughter's mother and guardian.

Just one thing: if you can keep your ideas "open" about where she is to live independently in the community, having only the option of supported housing for someone diagnosed with a chronic mental health disorder is NOT the only profile out there for persons with disabilities living independently. While she's been diagnosed with a seizure disorder, this isn't that unusual a development for young adults, as you've most likely learned from the professional literature. What's common about the condition is that you may not have had any early warnings about it, and that alone takes some "adjusting to" in terms of dealing with any feelings of blame or "not having been an observant parent."

Individuals on the spectrum can and do develop chronic levels of mental health conditions, depression and anxiety being among the most frequent, and as she's comparing herself with her chronological contemporaries, especially with so many surprises having come into her life that her other age-mates don't share, that getting her in touch with other young adults who share some of her neurological conditrions and even her weight concerns may be very important. As her guardian these are things you CAN control, whereas her thoughts about her long-time friends are matters over which neither she nor THEY have much control. Allowing her to remain in contact with her old friends may, indeed, be somewhat toxic, especially if she doesn't have positive, self-correcting thoughts about herself.

Finally, given the complexity of her needs and yours, it may be essential for you to "de-medicalize" the things for which a medical solution isn't necessary or even wise. It is difficult to find psychiatrists for young adults who understand all of the complex medical and social issues your daughter has, and who can speak intelligently and sensitively with you. [i assume your guardianship has also given you oversight of your daughter's medical rights.] If she's seeing a pediatric mental health specialist now, it may be time to transition her to a psychiatrist who specializes in transition-age young adults and more mature adults. Some families delay this type of provider transition, but given your daughter's complex needs and condition(s), doing the switch now and sooner might be better than "down the line."

Psychiatrists are not experts in testing. That's not their training. Neuropsychologists are, and that's the person you should seek so that the tests and measures administered to your daughter can establish her baselines in functioning and mentation, but also establish basic information about how she learns, how she resolves problems, how she relates to adult tasks, functions and roles,and how she perceives others [and by implication, herself...but NOT dwelling on herself excessively].

There's one other thing you might consider. There's one instrument that's been around for nearly a decade. In some states, it's being used by group home care providers in working up plans for their residents' support. It's called the Supports Intensity Scale, and it might be possible to find someone who administers this scale independently and privately. What's useful about the SIS is that it not only shows what the person can and can't do, but it also zeroes in on the kinds of supports the person may benefit from once baseline information is validated. This is a relatively new instrument, and while it has its critics, some developmental disability programs all over the country are using it. This doesn't mean, however, that they're the only folks who can administer it, and it sounds as though you have undertaken some of the early steps to become what amounts to your daughter's own private case manager. The results of the SIS might help you determine where in the community your daughter might find highly individualized support, including but in no way limited to "where she lives."

Here's one introductory URL to the SIS and how public agencies use it. For the moment, consider yourself such an agency until and unless you have come up with a good scheme of shared and delegated case management for her: http://www.ncdhhs.gov/mhddsas/providers/CAPMRDD/SIS/index.htm . Here's another site that gives additonal information: http://www.ncdhhs.gov/mhddsas/providers/CAPMRDD/SIS/index.htm .

Good luck.

N. Meyer

Re: AS and depression - Sylvia (was Re: OTRS - Sylvia)

Thanks for alerting and , Helen

Please and , your input would be very helpful. Thanks in advance.

My daughter goes to Communication Disorders Clinic tomorrow and they have agreed to do some testing. I will suggest WAIS-IV as a start.

As for diet/nutrition, Tiff wants to lose weight but won't give up dairy. There are also the medications that contribute to weight gain. She asks for my help, then refuses it.

Sylvia Sent from my iPhone

Hello again Sylvia,I can well imagine the confusion if your daughter was late dx'd! AS girls just seem to slip under the radar, sometimes being inappropriately labelled and even more inappropriately medicated. It is good to know that you have had the gumption to take the necessary steps to secure your daughter's future. Since you had to do much of this at a time when knowledge of AS (especially in girls) was still not widespread, it must have been quite a battle. And the road ahead is still hard. Sylvia, you are so strong! But you're on it and you laid the groundwork in a timely way. Wise mom!How horrible for you all - and how untimely - that your AS daughter developed seizures as your other daughter was dying. Your resources must have been stretched to the limit. I probably know less then you do about adult testing, but Meyer may have some sage words in this department. All I know is that the WAIS-IV (which measures verbal and performance IQ) is a current and common one used on autistic and non autistic adults. But the criticism is that it tends to undervalue areas of autistic strengths., who has actually been here for four years, has quite a lot of knowledge about nutrition and wellness, and how diet can worsen or improve autoimmune issues and even behavioral issues that can be co-morbid with autism. It might be time to revisit this topic again in this group. We have not explored this subject since the days when ASPIRES on the FEAT server, and and her husband were on the list. ? - Helen>> Thank you, Helen, for your kind support and incredible insight.> > My daughter got herdiagnosis at age 17, so imagine the confusion during her> lifetime. We do have options for support and I am working to find the right> psychiatrist who will listen and monitor anti-depressants, as well as her> seizure meds. (The seizures started during our extended caretaking period> in 2010-12.) And yes, she does present as a teenager, but wants to be> treated as an adult. We are starting with appropriate dress and will move> on to transitional help leading, which we hope till lead to employment.> Very low self-esteem, no friends locally; friends are from all over the> U.S. who have the option to gather twice a year. They, for the most part,> have jobs or are in school and this is increasingly depressing for her. She> tried higher education twice; didn't work out. She tried working in my> office; didn't work out, even with two job coaches. So of course I wonder> if there are tests that a psychiatrist can administer that will show us> exactly where she is intellectually and what her strengths are. I've got> the name of someone highly recommended but we have to wait until October as> a "new patient".> > Since it has become apparent that she will never be able to live> independently, I have obtain legal guardianship and that has set a new> dynamic in motion and she seems relieved. This has allowed me to be more> responsible for her emotional and financial issues and she is more willing> to work with me on establishing new behavioral patterns. Fortunately she is> receiving SSD, and has Medicare and Medicaid. She is warming to the idea of> an independent living arrangement but in order to qualify, she has to have> a Major Depressive Disorder diagnosis. The psychiatrist will, I assume,> assess this possibility.> > The autoimmune illness could be part of the picture. I will look into the> testing options and see if we can get an answer there. I'll also look for> K.'s posts in the archives.> > Sylvia

[Guest guest]

Hi...

There's a chance that the first Email response I sent didn't "catch." This is a repeat, copying my first shot.

From: rogernmeyer@...

To: aspires-relationships

Subject: Re: AS and depression - Sylvia (was Re: OTRS - Sylvia)

Date: Aug 29, 2012 7:32 PM

Sylvia,

I'm pretty sure administration of the WAIS isn't going to tell you much you don't already know. In terms of knowing HOW she thinks, a more appropriate evaluation with instruments the folks are likely to have at hand would be the Woodcock series of tests, some of which give a pretty good indication of processing delays and cognitive problem-solving challenges. Unfortunately, even the Woodcock J isn't really helpful, because it, like most such tests, is likely to focus on deficits and what your daughter can't do.

I do recommend your waiting until October when you'd be eligible for different, hopefully more comprehensive and meaningful testing. What you want is a strength-based neuropsychological full adult functional evaluation. You've mentioned that your daughter has already had some disappointing experience in higher education and difficulties at work in an office setting. Rather than subject her to more frustrating "take a stab" experiments typical for young adults but to which she's had an adverse response, consider using the time between "now" and October -- only a month or so -- to search for a neuropsychologist whose tests and measures are designed to produce a strength-based evaluation that can be used by support persons for your daughter of all kinds.

One of the challenges you most likely face is in working out your notion of what your guardianship of her involves. There are the independent living concerns you allude to, but much of where "both of you" are right now is in dancing around boundaries. She's just at that awkward age -- which can be prolonged for a late-diagnosed near adult young person -- where she's testing all kinds of limits, and it might be helpful for you to schedule some private time, for yourself, with a social worker or similarly trained counselor experienced with the kinds of issues you face as your daughter's mother and guardian.

Just one thing: if you can keep your ideas "open" about where she is to live independently in the community, having only the option of supported housing for someone diagnosed with a chronic mental health disorder is NOT the only profile out there for persons with disabilities living independently. While she's been diagnosed with a seizure disorder, this isn't that unusual a development for young adults, as you've most likely learned from the professional literature. What's common about the condition is that you may not have had any early warnings about it, and that alone takes some "adjusting to" in terms of dealing with any feelings of blame or "not having been an observant parent."

Individuals on the spectrum can and do develop chronic levels of mental health conditions, depression and anxiety being among the most frequent, and as she's comparing herself with her chronological contemporaries, especially with so many surprises having come into her life that her other age-mates don't share, that getting her in touch with other young adults who share some of her neurological conditrions and even her weight concerns may be very important. As her guardian these are things you CAN control, whereas her thoughts about her long-time friends are matters over which neither she nor THEY have much control. Allowing her to remain in contact with her old friends may, indeed, be somewhat toxic, especially if she doesn't have positive, self-correcting thoughts about herself.

Finally, given the complexity of her needs and yours, it may be essential for you to "de-medicalize" the things for which a medical solution isn't necessary or even wise. It is difficult to find psychiatrists for young adults who understand all of the complex medical and social issues your daughter has, and who can speak intelligently and sensitively with you. [i assume your guardianship has also given you oversight of your daughter's medical rights.] If she's seeing a pediatric mental health specialist now, it may be time to transition her to a psychiatrist who specializes in transition-age young adults and more mature adults. Some families delay this type of provider transition, but given your daughter's complex needs and condition(s), doing the switch now and sooner might be better than "down the line."

Psychiatrists are not experts in testing. That's not their training. Neuropsychologists are, and that's the person you should seek so that the tests and measures administered to your daughter can establish her baselines in functioning and mentation, but also establish basic information about how she learns, how she resolves problems, how she relates to adult tasks, functions and roles,and how she perceives others [and by implication, herself...but NOT dwelling on herself excessively].

There's one other thing you might consider. There's one instrument that's been around for nearly a decade. In some states, it's being used by group home care providers in working up plans for their residents' support. It's called the Supports Intensity Scale, and it might be possible to find someone who administers this scale independently and privately. What's useful about the SIS is that it not only shows what the person can and can't do, but it also zeroes in on the kinds of supports the person may benefit from once baseline information is validated. This is a relatively new instrument, and while it has its critics, some developmental disability programs all over the country are using it. This doesn't mean, however, that they're the only folks who can administer it, and it sounds as though you have undertaken some of the early steps to become what amounts to your daughter's own private case manager. The results of the SIS might help you determine where in the community your daughter might find highly individualized support, including but in no way limited to "where she lives."

Here's one introductory URL to the SIS and how public agencies use it. For the moment, consider yourself such an agency until and unless you have come up with a good scheme of shared and delegated case management for her: http://www.ncdhhs.gov/mhddsas/providers/CAPMRDD/SIS/index.htm . Here's another site that gives additonal information: http://www.ncdhhs.gov/mhddsas/providers/CAPMRDD/SIS/index.htm .

Good luck.

N. Meyer

Re: AS and depression - Sylvia (was Re: OTRS - Sylvia)

Thanks for alerting and , Helen

Please and , your input would be very helpful. Thanks in advance.

My daughter goes to Communication Disorders Clinic tomorrow and they have agreed to do some testing. I will suggest WAIS-IV as a start.

As for diet/nutrition, Tiff wants to lose weight but won't give up dairy. There are also the medications that contribute to weight gain. She asks for my help, then refuses it.

Sylvia Sent from my iPhone

Hello again Sylvia,I can well imagine the confusion if your daughter was late dx'd! AS girls just seem to slip under the radar, sometimes being inappropriately labelled and even more inappropriately medicated. It is good to know that you have had the gumption to take the necessary steps to secure your daughter's future. Since you had to do much of this at a time when knowledge of AS (especially in girls) was still not widespread, it must have been quite a battle. And the road ahead is still hard. Sylvia, you are so strong! But you're on it and you laid the groundwork in a timely way. Wise mom!How horrible for you all - and how untimely - that your AS daughter developed seizures as your other daughter was dying. Your resources must have been stretched to the limit. I probably know less then you do about adult testing, but Meyer may have some sage words in this department. All I know is that the WAIS-IV (which measures verbal and performance IQ) is a current and common one used on autistic and non autistic adults. But the criticism is that it tends to undervalue areas of autistic strengths., who has actually been here for four years, has quite a lot of knowledge about nutrition and wellness, and how diet can worsen or improve autoimmune issues and even behavioral issues that can be co-morbid with autism. It might be time to revisit this topic again in this group. We have not explored this subject since the days when ASPIRES on the FEAT server, and and her husband were on the list. ? - Helen>> Thank you, Helen, for your kind support and incredible insight.> > My daughter got herdiagnosis at age 17, so imagine the confusion during her> lifetime. We do have options for support and I am working to find the right> psychiatrist who will listen and monitor anti-depressants, as well as her> seizure meds. (The seizures started during our extended caretaking period> in 2010-12.) And yes, she does present as a teenager, but wants to be> treated as an adult. We are starting with appropriate dress and will move> on to transitional help leading, which we hope till lead to employment.> Very low self-esteem, no friends locally; friends are from all over the> U.S. who have the option to gather twice a year. They, for the most part,> have jobs or are in school and this is increasingly depressing for her. She> tried higher education twice; didn't work out. She tried working in my> office; didn't work out, even with two job coaches. So of course I wonder> if there are tests that a psychiatrist can administer that will show us> exactly where she is intellectually and what her strengths are. I've got> the name of someone highly recommended but we have to wait until October as> a "new patient".> > Since it has become apparent that she will never be able to live> independently, I have obtain legal guardianship and that has set a new> dynamic in motion and she seems relieved. This has allowed me to be more> responsible for her emotional and financial issues and she is more willing> to work with me on establishing new behavioral patterns. Fortunately she is> receiving SSD, and has Medicare and Medicaid. She is warming to the idea of> an independent living arrangement but in order to qualify, she has to have> a Major Depressive Disorder diagnosis. The psychiatrist will, I assume,> assess this possibility.> > The autoimmune illness could be part of the picture. I will look into the> testing options and see if we can get an answer there. I'll also look for> K.'s posts in the archives.> > Sylvia

[Guest guest]

, this is precisely the information I need. I have a call in to Tiff's neurologist to see if they can give me a referral for a neuropsychologist for a full adult functional evaluation. In addition, the Department of Communication Disorders has the link for the SIS and are going to discuss purchasing it for themselves. (I offered to purchase it as a donation.)

Your advice on her " old friends " is very relevant. Based on the month-long travel in July, I had tentatively decided not to send her in 2013 and I'm going to stick to it. She and I need quality time together and travel is the best way for us to get it--together.

Yes, my guardianship gives me oversight of Tiff's medical rights. She was seeing someone for bereavement counseling and when I finally got in to meet the therapist she told me she didn't see any signs of depression! Fortunately the woman retired so we will see someone new. I'm also looking at a psychiatrist at another facility.

Many thanks,Sylvia

 

Sylvia,

I'm pretty sure administration of the WAIS isn't going to tell you much you don't already know. In terms of knowing HOW she thinks, a more appropriate evaluation with instruments the folks are likely to have at hand would be the Woodcock series of tests, some of which give a pretty good indication of processing delays and cognitive problem-solving challenges. Unfortunately, even the Woodcock J isn't really helpful, because it, like most such tests, is likely to focus on deficits and what your daughter can't do.

I do recommend your waiting until October when you'd be eligible for different, hopefully more comprehensive and meaningful testing.  What you want is a strength-based neuropsychological full adult functional evaluation. You've mentioned that your daughter has already had some disappointing experience in higher education and difficulties at work in an office setting. Rather than subject her to more frustrating " take a stab " experiments typical for young adults but to which she's had an adverse response, consider using the time between " now " and October -- only a month or so -- to search for a neuropsychologist whose tests and measures are designed to produce a strength-based evaluation that can be used by support persons for your daughter of all kinds.

One of the challenges you most likely face is in working out your notion of what your guardianship of her involves. There are the independent living concerns you allude to, but much of where " both of you " are right now is in dancing around boundaries. She's just at that awkward age -- which can be prolonged for a late-diagnosed near adult young person -- where she's testing all kinds of limits, and it might be helpful for you to schedule some private time, for yourself, with a social worker or similarly trained counselor experienced with the kinds of issues you face as your daughter's mother and guardian.

Just one thing: if you can keep your ideas " open " about where she is to live independently in the community, having only the option of supported housing for someone diagnosed with a chronic mental health disorder is NOT the only profile out there for persons with disabilities living independently.  While she's been diagnosed with a seizure disorder, this isn't that unusual a development for young adults, as you've most likely learned from the professional literature. What's common about the condition is that you may not have had any early warnings about it, and that alone takes some " adjusting to " in terms of dealing with any feelings of blame or " not having been an observant parent. "

Individuals on the spectrum can and do develop chronic levels of mental health conditions, depression and anxiety being among the most frequent, and as she's comparing herself with her chronological contemporaries, especially with so many surprises having come into her life that her other age-mates don't share, that getting her in touch with other young adults who share some of her neurological conditrions and even her weight concerns may be very important. As her guardian these are things you CAN control, whereas her thoughts about her long-time friends are matters over which neither she nor THEY have much control. Allowing her to remain in contact with her old friends may, indeed, be somewhat toxic, especially if she doesn't have positive, self-correcting thoughts about herself.

Finally, given the complexity of her needs and yours, it may be essential for you to " de-medicalize " the things for which a medical solution isn't necessary or even wise. It is difficult to find psychiatrists for young adults who understand all of the complex medical and social issues your daughter has, and who can speak intelligently and sensitively with you. [i assume your guardianship has also given you oversight of your daughter's medical rights.] If she's seeing a pediatric mental health specialist now, it may be time to transition her to a psychiatrist who specializes in transition-age young adults and more mature adults. Some families delay this type of provider transition, but given your daughter's complex needs and condition(s), doing the switch now and sooner might be better than " down the line. "

Psychiatrists are not experts in testing. That's not their training. Neuropsychologists are, and that's the person you should seek so that the tests and measures administered to your daughter can establish her baselines in functioning and mentation, but also establish basic information about how she learns, how she resolves problems, how she relates to adult tasks, functions and roles,and how she perceives others [and by implication, herself...but NOT dwelling on herself excessively].

There's one other thing you might consider. There's one instrument that's been around for nearly a decade. In some states, it's being used by group home care providers in working up plans for their residents' support. It's called the Supports Intensity Scale, and it might be possible to find someone who administers this scale independently and privately. What's useful about the SIS is that it not only shows what the person can and can't do, but it also zeroes in on the kinds of supports the person may benefit from once baseline information is validated. This is a relatively new instrument, and while it has its critics, some developmental disability programs all over the country are using it. This doesn't mean, however, that they're the only folks who can administer it, and it sounds as though you have undertaken some of the early steps to become what amounts to your daughter's own private case manager. The results of the SIS might help you determine where in the community your daughter might find highly individualized support, including but in no way limited to " where she lives. "

Here's one introductory URL to the SIS and how public agencies use it. For the moment, consider yourself such an agency until and unless you have come up with a good scheme of shared and delegated case management for her: http://www.ncdhhs.gov/mhddsas/providers/CAPMRDD/SIS/index.htm . Here's another site that gives additonal information: http://www.ncdhhs.gov/mhddsas/providers/CAPMRDD/SIS/index.htm .

Good luck.

N. Meyer

 

 

Re: AS and depression - Sylvia (was Re: OTRS - Sylvia)

Thanks for alerting and , Helen  

Please and , your input would be very helpful. Thanks in advance.

My daughter goes to Communication Disorders Clinic tomorrow and they have agreed to do some testing. I will suggest WAIS-IV as a start. 

As for diet/nutrition, Tiff wants to lose weight but won't give up dairy. There are also the medications that contribute to weight gain. She asks for my help, then refuses it. 

Sylvia Sent from my iPhone

 

Hello again Sylvia,I can well imagine the confusion if your daughter was late dx'd! AS girls just seem to slip under the radar, sometimes being inappropriately labelled and even more inappropriately medicated.

It is good to know that you have had the gumption to take the necessary steps to secure your daughter's future. Since you had to do much of this at a time when knowledge of AS (especially in girls) was still not widespread, it must have been quite a battle. And the road ahead is still hard. Sylvia, you are so strong! But you're on it and you laid the groundwork in a timely way. Wise mom!

How horrible for you all - and how untimely - that your AS daughter developed seizures as your other daughter was dying. Your resources must have been stretched to the limit. I probably know less then you do about adult testing, but Meyer may have some sage words in this department. All I know is that the WAIS-IV (which measures verbal and performance IQ) is a current and common one used on autistic and non autistic adults. But the criticism is that it tends to undervalue areas of autistic strengths.

, who has actually been here for four years, has quite a lot of knowledge about nutrition and wellness, and how diet can worsen or improve autoimmune issues and even behavioral issues that can be co-morbid with autism. It might be time to revisit this topic again in this group. We have not explored this subject since the days when ASPIRES on the FEAT server, and and her husband were on the list. ?

- Helen>> Thank you, Helen, for your kind support and incredible insight.

> > My daughter got herdiagnosis at age 17, so imagine the confusion during her> lifetime. We do have options for support and I am working to find the right> psychiatrist who will listen and monitor anti-depressants, as well as her

> seizure meds. (The seizures started during our extended caretaking period> in 2010-12.) And yes, she does present as a teenager, but wants to be> treated as an adult. We are starting with appropriate dress and will move

> on to transitional help leading, which we hope till lead to employment.> Very low self-esteem, no friends locally; friends are from all over the> U.S. who have the option to gather twice a year. They, for the most part,

> have jobs or are in school and this is increasingly depressing for her. She> tried higher education twice; didn't work out. She tried working in my> office; didn't work out, even with two job coaches. So of course I wonder

> if there are tests that a psychiatrist can administer that will show us> exactly where she is intellectually and what her strengths are. I've got> the name of someone highly recommended but we have to wait until October as

> a " new patient " .> > Since it has become apparent that she will never be able to live> independently, I have obtain legal guardianship and that has set a new> dynamic in motion and she seems relieved. This has allowed me to be more

> responsible for her emotional and financial issues and she is more willing> to work with me on establishing new behavioral patterns. Fortunately she is> receiving SSD, and has Medicare and Medicaid. She is warming to the idea of

> an independent living arrangement but in order to qualify, she has to have> a Major Depressive Disorder diagnosis. The psychiatrist will, I assume,> assess this possibility.> > The autoimmune illness could be part of the picture. I will look into the

> testing options and see if we can get an answer there. I'll also look for> K.'s posts in the archives.> > Sylvia