Interview with Karen Foli RN, MSN, Ph.D.
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Topic: Auditory Processing Disorders
BECK: Hi Karen. In the summer of 2002 you and I spoke about your book, auditory processing disorders and how they impacted your life. The book was so "parent friendly" that I thought it would be a good idea to get back in touch and see how things are going. Would you please give me an overview of the book?
FOLI: Hi Doug. The book is primarily about my son, Ben. It covers the time from when he was about 2 ½ until he was about 7 years of age, and about discovering and managing his auditory processing disorder (APD).
BECK: How did you approach Ben's auditory processing disorder?
FOLI: Frankly, we were lost for a few years in terms of the correct diagnosis. We finally became aware of his auditory processing difficulties. One day it finally "clicked." So many things seemed paradoxical, but made perfect sense once we got the correct diagnosis. Some of the newer tools, like Fast Forward 1 & 2 were available as was Linda Mood-Bell Multi-Sensory Language. These were both helpful for us, but each child and each situation is different. One thing I stressed in the book was that our path was not necessarily a blueprint for other parents to follow, it was the blueprint we used and maybe it'll offer suggestions and ideas to others.
BECK: Karen, if I recall, you have a doctorate and a degree in nursing, and your husband is a child psychiatrist. So you knew something was wrong with Ben, and I suppose in some respects your knowledge added to the frustration, but in other respects it helped you push forward?
FOLI: Yes, that's true. We did have more resources than some families impacted by APD, and that allowed us to be proactive. We were very aggressive and didn't settle for anything in terms of help for our son.
BECK: You mentioned two therapy programs; Fast Forward and Linda Mood-Bell, can you speak about your experience with those?
FOLI: Sure. The Linda-Mood Bell Multi-Sensory Language Program was developed by two speech language pathologists. They have programs for kids who have difficulties in math, reading, spelling, and language processing. There are others too, for example the Orton Gillingham Approach has been endorsed by the American Dyslexic Society. What they have in common is they both use the sensory abilities of the child to build on their weaknesses. They use visual, auditory, and tactile type, multi-sensory approaches to learning and that's what "clicked" for my son, I credit the multi-sensory approach for his success.
BECK: If I recall, your son, Ben, has normal hearing?
FOLI: Yes.
BECK: And what were the results of his speech language evaluation before he started these programs?
FOLI: He was grossly delayed. He was delayed a year and a half. Additionally, we had early indications he was not correctly processing other cognitive information, which turned out to not be the case. All-in-all, it was a fairly dismal outlook, he was delayed in play skills and things like that too. Another thing was that he presented very differently to the outside world than to those of us in his "inner world," if you will.
BECK: And of course, the professionals only see what he's presenting to them!
FOLI: Exactly.
BECK: Which is another potential source of frustration. So how do you bridge that gap?
FOLI: It was very difficult, and to make it worse, the parents' credibility is at stake. I tried to say "He's not like this" and I tried to be real frank, but I think they thought, "Oh she's a mom in denial." And as you know, clinically and from life in general, you cannot prove a negative. I cannot prove he is not "like this."
BECK: Right, of course. So then you start to dislike or distrust the people or the facility you're depending on to help your son, and the frustration increases.
FOLI: Absolutely. I really had deep and visceral negative response to their conclusions. I would say things like, "But he's not like this and he can do so much more at home. His anxieties are off the chart right now." They would look at me and say, "Yeah, right." There is no easy answer. Each situation is different. The frustration builds and that's bad for everyone. I think you have to evaluate and manage each situation on it's own merit.
BECK: OK. Let's go back to the tools, the Linda Mood-Bell and Fast Forward. Who are appropriate candidates for those?
FOLI: That's really the $10,000 question -- candidacy! In the book I said those tools are not for everybody, and I have talked to parents that found those tools ineffective for their child. To me, it falls into a collaborative process between the parent and the professional. Once the parents and the professional decide to look at APD testing, they need specialized testing to pinpoint the problem and to help point us in the right direction. These tools aren't cheap! However, in the right situation, I think they are effective and having been through years of traditional speech language pathology, some of these home-based tools are a bargain -- if you look at it that way.
BECK: What were the speech language therapies that Ben was receiving?
FOLI: It was traditional. Some of it was pre-linguistic therapy; some of it was play therapy.
BECK: How old is Ben now?
FOLI: Ben is 11-years-old. He's in sixth grade and now he's reading a year above his grade level.
BECK: At what age was he identified as having APD?
FOLI: He was 6 years of age when he was diagnosed with APD, and his reading and language at that point were 1-2 years behind. He was in first grade and he could hardly write his name. His printing and spelling were abysmal. He had no symbol-word association ability at all. It was really bad.
BECK: What was the single most helpful therapy? Was there one thing that really propelled him forward?
FOLI: There wasn't one therapy that was really helpful - It's not like some other disorders where you give a pill or say "do this." It's an ongoing process and I think it takes a combination of things to really reach the child. For example, we used Fast Forward and that helped him realign his ability to take in sounds at the proper speed. But also, his reading and spelling were so grossly inadequate, and that's where the multi-sensory structured language program helped him. So, my advice is don't just rely or depend on one tool. I think some parents are so desperate they want to say, "Well this is it, we found the answer." But it seems to me to take more than one "magic bullet," it's a combination of effective and appropriate tools.
BECK: If you were to advise parents with "hard to handle" kids, and usually they are boys, who is the most appropriate professional to see?
FOLI: Unfortunately, the mental health resources in our country have been decimated. It's a real crisis situation. If the child has the signs and symptoms and history of Attention Deficit Disorder, and you take them to the pediatrician, they see them for five minutes and they say, "Yep, here's some Strattera or Ritalin or whatever." Strattera is a new non-stimulant medication used for Attention Deficit Disorder. The psychiatric and psychological aspects, the co-morbid conditions, such as anxiety which may appear to be fidgety behavior and that type of thing, need to be addressed. There probably isn't one professional who can really take care of the child, you need to assemble a team, and it's very difficult to do that. The team would include the teacher, often an occupational therapist, because a lot of these kids have sensory problems, an audiologist, a speech language pathologist and a psychologist for therapy and self-esteem issues and socialization issues. So I think you really have to look at all aspects of your child, and it's not a single professional that can handle this. You can't just deal with one professional and say "We're done." It's too complicated and unfortunately the system is not set up to enable you to do that.
BECK: We just described an incredibly negative and depressing scenario....What are the solutions?
FOLI: Well the solutions are to be as innovative as you can. Read everything you can on the topic and network with other parents, ask them where they went for help, and who was good, and who wasn't! Get referrals. If necessary, call your HMO and tell them "This was not a good evaluation - I want somebody else." Write letters. It takes a tremendous amount of time and energy, but if you're not the advocate for your child, it's not likely anyone else will fill that role.
BECK: Okay. Thanks Karen. I want to encourage parents to read all they can about this, and with that in mind, let me again recommend that they get a copy of your book, ISBN 0743421981, through Amazon, Barnes & Noble, and other book stores too. Another great resource is the book by Teri James Bellis, called "When the Brain Can't Hear", ISBN 0-7434-2863-3.
FOLI: Thanks Doug. I appreciate the recommendation.
BECK: My pleasure Karen, thanks for your time this morning.
FOLI: Hi Doug. The book is primarily about my son, Ben. It covers the time from when he was about 2 ½ until he was about 7 years of age, and about discovering and managing his auditory processing disorder (APD).
BECK: How did you approach Ben's auditory processing disorder?
FOLI: Frankly, we were lost for a few years in terms of the correct diagnosis. We finally became aware of his auditory processing difficulties. One day it finally "clicked." So many things seemed paradoxical, but made perfect sense once we got the correct diagnosis. Some of the newer tools, like Fast Forward 1 & 2 were available as was Linda Mood-Bell Multi-Sensory Language. These were both helpful for us, but each child and each situation is different. One thing I stressed in the book was that our path was not necessarily a blueprint for other parents to follow, it was the blueprint we used and maybe it'll offer suggestions and ideas to others.
BECK: Karen, if I recall, you have a doctorate and a degree in nursing, and your husband is a child psychiatrist. So you knew something was wrong with Ben, and I suppose in some respects your knowledge added to the frustration, but in other respects it helped you push forward?
FOLI: Yes, that's true. We did have more resources than some families impacted by APD, and that allowed us to be proactive. We were very aggressive and didn't settle for anything in terms of help for our son.
BECK: You mentioned two therapy programs; Fast Forward and Linda Mood-Bell, can you speak about your experience with those?
FOLI: Sure. The Linda-Mood Bell Multi-Sensory Language Program was developed by two speech language pathologists. They have programs for kids who have difficulties in math, reading, spelling, and language processing. There are others too, for example the Orton Gillingham Approach has been endorsed by the American Dyslexic Society. What they have in common is they both use the sensory abilities of the child to build on their weaknesses. They use visual, auditory, and tactile type, multi-sensory approaches to learning and that's what "clicked" for my son, I credit the multi-sensory approach for his success.
BECK: If I recall, your son, Ben, has normal hearing?
FOLI: Yes.
BECK: And what were the results of his speech language evaluation before he started these programs?
FOLI: He was grossly delayed. He was delayed a year and a half. Additionally, we had early indications he was not correctly processing other cognitive information, which turned out to not be the case. All-in-all, it was a fairly dismal outlook, he was delayed in play skills and things like that too. Another thing was that he presented very differently to the outside world than to those of us in his "inner world," if you will.
BECK: And of course, the professionals only see what he's presenting to them!
FOLI: Exactly.
BECK: Which is another potential source of frustration. So how do you bridge that gap?
FOLI: It was very difficult, and to make it worse, the parents' credibility is at stake. I tried to say "He's not like this" and I tried to be real frank, but I think they thought, "Oh she's a mom in denial." And as you know, clinically and from life in general, you cannot prove a negative. I cannot prove he is not "like this."
BECK: Right, of course. So then you start to dislike or distrust the people or the facility you're depending on to help your son, and the frustration increases.
FOLI: Absolutely. I really had deep and visceral negative response to their conclusions. I would say things like, "But he's not like this and he can do so much more at home. His anxieties are off the chart right now." They would look at me and say, "Yeah, right." There is no easy answer. Each situation is different. The frustration builds and that's bad for everyone. I think you have to evaluate and manage each situation on it's own merit.
BECK: OK. Let's go back to the tools, the Linda Mood-Bell and Fast Forward. Who are appropriate candidates for those?
FOLI: That's really the $10,000 question -- candidacy! In the book I said those tools are not for everybody, and I have talked to parents that found those tools ineffective for their child. To me, it falls into a collaborative process between the parent and the professional. Once the parents and the professional decide to look at APD testing, they need specialized testing to pinpoint the problem and to help point us in the right direction. These tools aren't cheap! However, in the right situation, I think they are effective and having been through years of traditional speech language pathology, some of these home-based tools are a bargain -- if you look at it that way.
BECK: What were the speech language therapies that Ben was receiving?
FOLI: It was traditional. Some of it was pre-linguistic therapy; some of it was play therapy.
BECK: How old is Ben now?
FOLI: Ben is 11-years-old. He's in sixth grade and now he's reading a year above his grade level.
BECK: At what age was he identified as having APD?
FOLI: He was 6 years of age when he was diagnosed with APD, and his reading and language at that point were 1-2 years behind. He was in first grade and he could hardly write his name. His printing and spelling were abysmal. He had no symbol-word association ability at all. It was really bad.
BECK: What was the single most helpful therapy? Was there one thing that really propelled him forward?
FOLI: There wasn't one therapy that was really helpful - It's not like some other disorders where you give a pill or say "do this." It's an ongoing process and I think it takes a combination of things to really reach the child. For example, we used Fast Forward and that helped him realign his ability to take in sounds at the proper speed. But also, his reading and spelling were so grossly inadequate, and that's where the multi-sensory structured language program helped him. So, my advice is don't just rely or depend on one tool. I think some parents are so desperate they want to say, "Well this is it, we found the answer." But it seems to me to take more than one "magic bullet," it's a combination of effective and appropriate tools.
BECK: If you were to advise parents with "hard to handle" kids, and usually they are boys, who is the most appropriate professional to see?
FOLI: Unfortunately, the mental health resources in our country have been decimated. It's a real crisis situation. If the child has the signs and symptoms and history of Attention Deficit Disorder, and you take them to the pediatrician, they see them for five minutes and they say, "Yep, here's some Strattera or Ritalin or whatever." Strattera is a new non-stimulant medication used for Attention Deficit Disorder. The psychiatric and psychological aspects, the co-morbid conditions, such as anxiety which may appear to be fidgety behavior and that type of thing, need to be addressed. There probably isn't one professional who can really take care of the child, you need to assemble a team, and it's very difficult to do that. The team would include the teacher, often an occupational therapist, because a lot of these kids have sensory problems, an audiologist, a speech language pathologist and a psychologist for therapy and self-esteem issues and socialization issues. So I think you really have to look at all aspects of your child, and it's not a single professional that can handle this. You can't just deal with one professional and say "We're done." It's too complicated and unfortunately the system is not set up to enable you to do that.
BECK: We just described an incredibly negative and depressing scenario....What are the solutions?
FOLI: Well the solutions are to be as innovative as you can. Read everything you can on the topic and network with other parents, ask them where they went for help, and who was good, and who wasn't! Get referrals. If necessary, call your HMO and tell them "This was not a good evaluation - I want somebody else." Write letters. It takes a tremendous amount of time and energy, but if you're not the advocate for your child, it's not likely anyone else will fill that role.
BECK: Okay. Thanks Karen. I want to encourage parents to read all they can about this, and with that in mind, let me again recommend that they get a copy of your book, ISBN 0743421981, through Amazon, Barnes & Noble, and other book stores too. Another great resource is the book by Teri James Bellis, called "When the Brain Can't Hear", ISBN 0-7434-2863-3.
FOLI: Thanks Doug. I appreciate the recommendation.
BECK: My pleasure Karen, thanks for your time this morning.
