Mon 28 Nov 2005
Dinara’s APD
Posted by Kym under Kids and Hubby
Dinara had the second part of her appointment with an Audiologist last week. It was with a different doctor and one that specializes in APD. (Auditory Processing Disorder). They spent about 3 hours doing various tests. I waited in the waiting room. This doctor wanted to work 1:1 with her. Went fine although after break number gazillion, I will admit to bribing her to “just push through it”. She doesn’t like to do tests she can’t master so I can hardly blame her wanting to take lots of breaks.
So after it was over, they spent 30 minutes analyzing the results and then gave me this Power Point presentation. Wow. Power Point. That was a tip off. I bet you don’t get the Power Point presentation when your kid doesn’t have APD. There were four major areas and Dinara scored in three of them. She actually had issues in all four, but they want to focus on just three. I don’t remember everything they told me and I’m waiting for the written report, but in a nutshell these are three areas she has difficulty in:
Output and Organization Deficit. It presents that she can hear it and understand it but cannot remember it. People usually describe these children as disorganized, impulsive and a poor planner. They have trouble communicating and understanding in noisy environments. They often have difficulty with expressive language and word retrieval.
Auditory Associative Deficit: Presents as “I heard you but I don’t understand or I don’t understand what you mean”. This will present with her having difficulty understanding passive or complex sentences. Difficulty comprehending information in increasing complexity. Difficulty understanding multi-meaning words - among many other problems that are too numerous to list. They expect that this will most likely really show up academically around third grade.
Auditory Decoding Deficit. This presents as almost mimicking high frequency hearing loss as they can’t distinguish fine acoustic differences in speech. It will present with major problems in reading, spelling and semantic and vocabulary skills. It creates an auditory chaos and she will have trouble when there isn’t redundancy and ways for her to get other cues.
So our next step is now to take her to a Neuro-Physiologist for general testing. She went to a Neuro Develompental Practioner in Seattle, who did a neuro evaluation on her. I didn’t start with the Neurophysiologist because friends of mine who have gone to both said this NDP came up with the same diagnosis as the NPhysiologist at 20% of the cost. But I suppose now with the APD and Audiologist recommendation, the insurance will pay for the NPhysiologist. So why not right? I do not feel like the APD explains 100% of the problem. I just think it’s about 85%.
So there are two parts we will be pursuing at this point. First, we will start creating a treatment plan for the APD. We are probably looking at intensive speech therapy. Daily or every other day. (This ought to be fun… dragging three kids to speech therapy several times a week?) I’ll start researching more about methods. For APD, the Fast Forward program is supposed to be amazing. I’ll also follow up on the Tomatis method and learn more about that. Secondly, I’ll set up an appointment with the Nphysiologist. I know which Pediatric one I want to go to who has worked with other internationally adopted kids and has a focus on language has a waiting list. I will also need to figure out if we should just bipass the Neurophysiologist at this point and just start at the very top with a Pediatric Neurologist. More research I guess.
So there is some good news in all this. Now that we have a formal diagnosis the school cannot remove her IEP. Dinara is reading so well I was worried they would try because they tried to last year. She is actually reading which really surprised the doctor. The Audiologist says she must have a fairly high IQ because she is compensating in so many different ways to overcome her disability. In her mind, with as severe as Dinara tested out she shouldn’t be reading at all. So that’s good.
I guess I also want to say that we wouldn’t have this diagnosis if I had waited for some doctor to help me. I found out about APD on the internet. My General Practioner didn’t know about it, the school sure as heck didn’t know about it or help me with it, the school psychologist didn’t help me and even the speech pathologists didn’t help me. I would explain what was going on with Dinara and people would look at me with a blank stare. I’d get some sort of look like “oh you just have an ADD kid” or “your expectations are too high”. I knew something was wrong. I had to find it on the internet, then ask for a referral to an Audiologist. Then I had to find one that specialized in APD. Then I had to wait till Dinara was 7 because they couldn’t “norm” her till then. And now… we know. Now at least we can come up with a plan to manage this learning disability. So my advice to other parents out there is not to expect the “experts” to really be able to diagnose anything. I think when you think something isn’t right, you have to be really persistent to get it figured out. Or lucky to get someone who can figure it out on the first shot.
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November 28th, 2005 at 7:17 pm
Unfortunately, I think more and more parents are learning the hard way that the deck is stacked against children without “mainstream” disabilities. Schools, doctors and insurance companies don’t want to help diagnose or treat many problems and it’s left up to the parents to do some minor diagnosing and then push for every step of the process. Dinara is so blessed to have a mom, like you, that is willing to make that effort. Good luck on your journey. Don’t forget that it’s worth it!
November 30th, 2005 at 8:45 am
I had major learning disabilities of a different kind as a kid. In the end, I overcame them - and succeeded beyond most people in my class. I think in the end, my disability propelled me to succeed. It made me want to show people that I was better than they thought.
In a psych class in college, while getting my master’s degree, I was shocked to find out that 10 of 20 students in the class had a similiar experience to mine — and hence were doing the same thing as me — reaching higher and higher — all these years later due to the effects of being “disabled”.
In the end, this could be a huge positive for you and your kids.
November 30th, 2005 at 1:05 pm
I am just so impressed with you as a Mama for being such a hardcore advocate for your kids. Over and over again I have seen you show your love and your committment to your children, and I am just honored to know a Mama like you. Way to keep pushing and get Dinara the diagnosis and proper help she needs. It doesn’t surprise me at all that she has such a high IQ and can read when they say she shouldn’t.
December 14th, 2005 at 1:19 am
I have a 13 yr old daughter who has CAPD, too. And my experience is much like yours has been. What I’ve learned is that very few people know about APD and even less know what to do with a child who has it. In our case, we happen to live in Boston which allowed us to use the fabulous resources of Children’s Hospital’s Developmental Center. When we were in CA, nobody could tell me what was wrong, but everyone knew there was something amiss. But at Children’s we had her see a developmental pedicatrician, developmental psychologist, developmental neurologist and an audioligst all of whom assembled as a team to meet and discuss her case. It was discovered that not only did she have CAPD, but she also has a non-verbal learning disability. Often the two seem to go hand in hand, or they get confused with each other. She had intensive speech therapy for several years, and still sees a SLP once a week at school, and is overseen in classes by a SLP and a classroom aide. We never went for an FM system because her hearing is ok, she just has word recognition and decoding problems. They have both vastly improved over time, but she still have a lot of problems following a story or a plotline. But she went from a really piss poor student in sped classes to a mainstreamed kid with an A/B average in every class including honors math. Her IEP is a masterpiece, if I do say so myself, and I scream bloody murder if it is not followed to the letter.
Good luck with this. It’s a constant battle but it does improve over time.