Wednesday, June 11, 2014

A.P.D. The Silent Struggle

I am doing something extraordinary! I am about to be transparent and vulnerable with you. That is NOT one of my strengths! I am normally a very guarded person, but I feel that it is necessary to let you in on a behind-the-scenes look at our life with Auditory Processing Disorder.  My hope is that by sharing my experiences and struggles with you that you would be better equipped to help identify and serve your students or even family members who may have Auditory Processing Disorder. 
My daughter looked just like the girl in the image above when we first found out about her A.P.D.. Following directions was never easy for her. She desperately wanted to do what we said. Obedience was not the barrier. She simply didn't understand what we were asking her to do.  I can still hear her little voice asking, "What you said, Mommy?" over and over again. We did our best to be patient and give her one direction at a time.  Then, she started preschool. She began to really struggle with following directions. One day, we sat down to look at her papers together. Across the top of many sheets the teacher had written in all caps, "DID NOT LISTEN!". My daughter had clearly not followed directions. I asked her what she thought the teacher had written on her work. She said, "I think it says 'You're dumb.' because that is what the teacher said when she gave me back my papers."  That BROKE-MY-HEART, y'all! She was not dumb! She was exceptionally bright! So, why couldn't she follow simple directions?!? 

In Kindergarten, her teacher wondered if it was a hearing issue. So, we had her hearing tested by the nurse. She passed!  They brought in an audiologist.  Again, she passed! However, the audiologist also asked her some questions and gave her a set of directions to follow. She failed- BIG TIME! Finally, we were onto something. The audiologist did some further testing and gave us the answer that had been eluding us: Auditory Processing Disorder.

Life with A.P.D. is NOT easy! Furthermore, research has shown that it is largely genetic.  So, from this point on, I will give you examples of A.P.D involving my husband, my daughter, and my son. All three of them have A.P.D. in various forms. Some days are better than others. This morning was rough. Therefore, I am blogging about it as therapy for myself. :) 

What is A.P.D. and how can you identify it?  We hear with more than just our ears. Our brains have to process or interpret what we heard, too.  That is where this neurological defect kicks in.  A.P.D. is not ADD or ADHD. People with those disorders cannot focus well enough to listen. A.P.D. is not autism. Their language issues are unique to that disorder. This is a specific auditory issue. It affects people of all I.Q. levels. I have RtI students with A.P.D. My own kids are gifted and have A.P.D.. Their brains just have a minor malfunction when it comes to understanding what they heard.

There are some obvious symptoms.  Here's a quick list of some red flags to watch out for. 
Here are some scenarios involving my family that may help illustrate these symptoms.
  • Anxiety reigns in my home! Imagine how you would feel if you were in a constant state of confusion. You would always be wondering, "Did I hear my teacher, right? What if I do this wrong and the kids laugh at me? What if I ask her what to do AGAIN and she gets angry AGAIN?" 
  • Difficulty remembering things: Oh, boy, I could write a book about this one! Life sometimes feels like a constant game of 20 questions. I am always trying to figure out the meaning of that lady, that man, that thing, that place we went, etc. 
  • They need directions over and over again. Often, I give them one task, have them repeat it to me, and then come back for the next step when it's done. 
  • My husband and I call this one "the deer in the headlights look". We ask a question or give directions and the kids just stare at us wide-eyed in panic and confusion. 
  • Incomplete or incorrect task completion is abundant. They will often do part of what we said (usually the last part) or do the opposite of what we said. For example, if I said, "Son, that toilet is not working correctly. Someone filled it with too much toilet paper. Please do not use this stall." This otherwise brilliant boy will stare at me and walk directly into that stall! When I ask, "Where are you going?" He will look confused and say, "You said, 'Use this stall'." True! I did. Those were my last three words and that was all he was able to process quickly.
  • Difficulty summarizing: Wow, again, this one is super tricky! Mentally organizing information for a summary of a long conversation or a book report is extremely challenging. Guiding questions definitely help!

  • Exhaustion: Do you remember how you felt during a job interview? Trying to listen carefully to the questions, interpret them, and answer coherently is draining! Now, imagine feeling that way for 7 hours a day! That is how school feels for kids with A.P.D.. Every moment is taxing as you try to make sense of what is expected of you. My kids cannot participate in sports or other extracurricular activities because they are simply worn out from thinking at school. We have tried several activities, but it overwhelmed them.  So, we use our evenings as a time of rejuvenation at home.
  • Reluctance to go first or watching what others are doing is a MAJOR indicator of A.P.D. and it is SO EASY to miss! My son tried taking classes in Parkour. He would stand right next to the coach, stare intently at his face, and listen as the coach explained the five obstacles he wanted them to run. The boys would line up for the obstacle course and my son would quickly run to the end of the line so that he could watch to see what the other boys were doing before it was his turn. Even after hearing the directions, he needed to SEE what the coach expected him to do.
  • Maybe you like playing music in your classroom or allow kids to talk among themselves as they work. This can be a terrible distraction to students with A.P.D. These students are working hard enough to filter out what is important in what you are saying. Crowded places, noisy restaurants, and loud conversations are a definite no-no for us, too. 
So, what can you do to help in your classroom or even in your home?  Here is a little advice that I have found to be tried and true.
Most of these are self-explanatory, but I would like to emphasize the importance of visuals and gestures. Please take the time to write down the page number, the due date of the project, make an exemplar of the finished art project, anything that will make the directions more visual than auditory. Please do not underestimate the power of gestures. Sometimes I feel like one of those workers at the airport who guide planes in with those orange light stick thingies, but it does help.  Move your fingers like scissors if they are expected to cut something out. Shake your head and hands back and forth if they are NOT supposed to do something. Every little visual cue helps!

Above all, please avoid doing the following things. These students should never be made to feel inferior or even stupid for something that they cannot help!


If you made it this far, thanks for reading! I hope that this information is helpful to you. I love my family! Overall, my home is a joyful place filled with the three most compassionate, intelligent, and hilarious people I know. However, I am tired of feeling like we are hiding a secret. My kids aren't perfect. (GASP!) I am not perfect. (BIGGER GASP!) But no matter what we face, we love each other and we're here to help each other on this wonderful, crazy journey! 

Do you know anyone with A.P.D.? Got any tips to share? I would appreciate hearing your thoughts. 


17 comments:

  1. Thank you for sharing. I teach children with this, and it is frustrating to them. I often think that it would be like me being underwater, having to listen to a teacher talk above the water.

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    1. Thanks, Kathy! You are right APD is frustrating both for the student and for the teacher/caregiver. I think that your underwater analogy is excellent! My kids have learned to cope extremely well, but we still have our moments. I worry most about their futures when it comes to advanced notetaking and college/job interviews. Everyone has their challenges though. This one just happens to be ours. :)

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  2. Dear Jenn,
    Thank you so much for sharing this information! I have had many students over the past couple of years who exhibit the symptoms you describe. Is there any other ways that I as a teacher can let the powers that be (the administration, psychologist, speech teacher) become more aware of APD?
    Is there any way in a school setting that I can get these students more help? Thank you again for being so transparent. I am sure I am not the only teacher out there who sees this in their classroom. Bless you for your patience and your sharing.
    Donna

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    1. Thank you so much for your kind words of encouragement, Donna! I appreciate your desire to educate yourself and others about APD. Here are a few links that you may want to share with your RtI team/SpEd dept/Admin.
      http://www.asha.org/public/hearing/Understanding-Auditory-Processing-Disorders-in-Children/
      http://www.ncld.org/types-learning-disabilities/adhd-related-issues/auditory-processing-disorders/auditory-processing-disorders
      https://www.youtube.com/watch?v=iabuAiYZVxI
      So often just being willing to create visual aids and have the student repeat the directions to you can ease so much of their anxiety. I know that with my own kids when they are nervous about not knowing what to do, the problem is amplified, but if they feel that they are in an environment where they can safely ask for clarification, their symptoms are lessened.
      You probably have or have had students with APD. Research indicates that about 5% of the population is affected by APD.
      Thanks for taking the time to comment on my new blog! I truly appreciate it!

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  3. I have raised a daughter with APD and have identified similar symptoms in many children in the 28 years I have taught. In the classroom, after giving instructions and checking for understanding I frequently put on gentle classical music or neutral tones such as ocean sounds or Native American flutes. I sought private help for my own daughter with a local clinic. They recommended Somonis Sound Therapy, a prescriptive program for APD. The results were nothing short of astonishing. These kids struggle greatly! The best way to approach them is with compassion and boatloads of patience. It is necessary to find short, precise explanations for new concepts.

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    1. Thank you so much for sharing this wonderful advice! I appreciate your recommendations! I will definitely have to research Somonis Sound Therapy.

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  4. What a wonderful story. Thank you so much for sharing! I love hearing a teacher mom's perspective on these things.

    Tara
    The Math Maniac

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    1. Thanks, Tara! I attend LOTS of RtI, IEP, and 504 meetings, but today was my first time sitting on the other side of the table. It was a very beneficial experience!

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  5. I had a student last year with suspected A.P.D. and I have a little guy this year with lots of the symptoms you listed. Thanks so much for this enlightening post! I am going to share with some of my school colleagues and families!
    ~Jennifer
    Stories and Songs in Second

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    1. Thanks for your sweet comment! Most teachers have never even heard of A.P.D.. It is far more prevalent than many people think. I truly recommend the book, "When the Brain Can't Hear". It is a great resource for families and educators.

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  6. You forgot my favorite! "What?" I must say that 20 times a day!

    One thing about APD is that it is so varied, most of what you described above does not fit with my experiences and yet I have APD. When I was little no one told me secrets because I would constantly have to say "what?" and they would just give up and go tell someone else. My husband just starts talking to me and by the time I realize he's talking to me (despite the fact that I'm the only one in the room) he's almost finished. I have to ask him to repeat himself and remind him that he can't just start talking without first getting my attention. My parents used to yell at me because they'd call my name over and over and I wouldn't respond simply because I had focused on something else. To this day I hate getting directions from people because they go too fast and my brain just can't handle all the influx of information and I don't want to appear stupid and ask them to repeat themselves five times.
    There are also other disorders that can co-occur with APD, some people have dyslexia, speech disorders, even slight hearing loss that shouldn't be a problem but is because of APD.
    Don't forget the funny things though, recently friends were talking about "John Muir" which is the name of the hospital they work at. But they were talking about music, I kept thinking "Is John Muir like a new folk band or something?" I tried to ask someone not in the conversation (so I don't look dumb) but they have no idea what I'm talking about. Finally I ask who they are talking about, it's "John Mayer" which in retrospect makes a lot more sense than John Muir. Sometimes (at least for me) I get stuck on one thing that I've misheard and I lead myself in the wrong direction trying to figure it out instead of just asking.
    Thanks for sharing your experiences.

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    1. Megan, thank you so much for sharing your story! My daughter's constant "What you said?" when she was two years old was our first indication that something was amiss. I say my children's names ALL of the time. If I don't get their attention first, nothing seems to get through. They, of course, return the favor. So, I hear "Hey Mom ..." about a bazillion times a day! :) You are right that APD can co-occur with other disorders. My daughter also has some executive function delays and anxiety issues. APD is also very unique to each person. I tried to provide a broad description of the disorder, but not everyone's manifestations will match up exactly as your story demonstrates. Thanks again for sharing!

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  7. Jenn,
    Thank You for sharing your story! I believe my son has APD as this sounds just like him. He also has Dyslexia, Executive Function issues, Anxiety, ADHD AND he can't sleep at night. It has been very frustrating trying to find resources to get him some help (and I am also a teacher!). It is comforting to know that others have similiar struggles and that he and I are not alone.

    Steph

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    1. Hi, Steph! Thanks for sharing! You are definitely not alone. My daughter also has some executive function issues, anxiety, and some insomnia. They often come as a package deal. I wrote a post on executive function. If you would like, you can read more here (http://2ndgradesnickerdoodles.blogspot.com/2014/11/executive-function-what-every-teacher.html) Feel free to contact me if you ever need help. If your son doesn't have a 504 plan, I strongly advise getting one. It has been a huge blessing to us! Best wishes!

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  8. I have a degree in special education, and it is STILL hard to tell the difference between a child with Auditory Processing Disorder and ADD (without formal assessment by a diagnostician or school psych. of course). I teach several gifted kids who follow only one or part of the directions on projects, and it is very frustrating. Thanks for your post!

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  9. Thank you for sharing.I am a new grad working in a pediatric outpatient clinic (OT). I came across with your blog looking for some activities i need to work on with similar concerns.

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  10. Why do you feel this should be a secret? I have suffered from this condition all my life and finally diagnosed at age 65. I used to be beaten with a bamboo cane by parents and most of the time I did not know what I had done or said that was wrong. I was too frightened to ask in case I was beaten again. As an adult I often found myself in trouble in various situationso when I didn't understand what was going on, including at work. I wasn't diagnosed until two years after I gave up work suffering from stress and anxiety. Now I make sure I understand what is said and what is happening, asking for clarification and help when needed. I tell anyone who needs to know about my disability, which is hidden and distressing. It has been a secret even from me, for far too long. Thank you for sharing this information.

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