Hello! This blog is about my daughter Hailey (currently 12 years old) and her experiences living with auditory processing disorder. Auditory Processing Disorder is Hailey's primary issue, however she has also been given the labels Sensory Processing Disorder, Dyslexia, Visual Processing Disorder, Mixed Expressive Receptive Language Disorder and Phonology Disorder at various points in her life.

Sunday, May 26, 2013

Do Children with APD Have More Fears than Their Peers?

My spouse and I were talking the other day about how our sweet girl with auditory processing disorder has always needed more reassurance than our two non-APD boys.  She asks five, six, seven times every night if we've locked all the doors.  She tells us all to have safe dreams before sleeping and insists we tell her the same thing and it can't be "good dreams", it has to be "SAFE dreams".

It's not just the night time sleeping that brings concerns for her.  Whenever I (being mom) leave the house without her, she looks at me deeply in the eyes and tells me to drive very, very safely and be very, very careful to not get hurt and come home to her safely.  Then she gives me at least three hugs and longingly waves me off.  She is worried that something will happen to me and she will never see me again.  I think this is because she still relies very much on me for support; I'm the one person in her world that truly understands her.

My spouse gets concerned that maybe this is not the APD, but I really feel that it is.  I imagine that if I lived in a world where I understood sometimes as little as half of what I heard each day, I'd feel pretty lost and confused and scared.  I would rely that much more on those I trust would support me and care for me and always be on my side.  It just makes sense to me.

As our sweet girl gets older, she does make strides in her comfort level with living in this world.  She used to never be able to be away from me at all without acting fearful; now she does let me leave for several hours away without her and she functions just fine, enjoying her life.  She used to need constant sensory support such as something to chew on and her little blanket "Nonny" to hold for support, but she stopped carrying Nonny and she stopped needing to have something in her mouth. She used to need me to do things like go into the locker room with her at ice skating and now she asks me to stay out so she can be on her own like her peers.  When she was little, she did sleep in our room with us until she was seven years old; we let her decide when she wanted to sleep in her own room. (We did the same for our boys of course.) Now she always sleeps in her own room and even feels comfortable staying the night at her friends' homes.  So as time goes on and she gets older, she does feel more "safe" and doesn't need as much support as she once did.  Maybe she hasn't been on the same path as her peers and maybe her time frame  has been different, but it is her path, and in her time, and therefore it is what works best for her.

I am a firm believer that children grow in the times and ways that work best for them and if she has more fears, then I will help her through them by providing the support she needs now, showing her how to support herself but not taking that support away from her until she has asked for me to do so; she knows herself even better than I know her and I respect that.  I want her to know without a doubt that I am there for her whenever she needs me, without judgement and without fear that I will suddenly just stop when she isn't ready for me to do so.

Tuesday, May 14, 2013

Homeschooling a Child with Special Needs/Learning Disabilities Avoids A Lot of the Anxiety

I want to start by saying that I know many people cannot homeschool for various reasons (in some countries it is actually illegal) and others choose not to homeschool because they feel that school is best for their child.  I feel very fortunate that homeschooling was an option for us.

Here are some of the benefits of homeschooling my child with auditory processing disorder:

  • She is not forced to sit for 7+ hours each day at school trying to process auditory input.
  • She is not feeling judged or compared constantly by teachers giving grades or her peers making comments.  
  • She is not having to try to socialize with groups of her peers who do not understand her. (Yes she does run into social problems because of her APD, but it is not on a daily basis.)  
  • She has time to pursue her interests like art and baking or even watch a movie 3 times or more until she finally feels she has processed all of it and gained any wisdom from it she could. 
  • She learns at her own pace and her own style. (She is visual and auditory input must be kept limited.)
  • She reads what interests her and takes as much time as she needs to read it. (Just the other day, she read some poems by Langston Hughes and wrote a poem as a response to her readings, all of her own choosing.)
  • She writes because she enjoys it and takes as much time as she needs to write.
  • She does math problems because she actually likes solving them.  Yes, she likes math because she takes her time and does what interests her at that moment. (She is currently above "grade level" in math.)
  • She has me, her mom, available to her for help and guidance and support as needed.  
  • We can hand-pick friendships to pursue that are more conducive to success as well as I can be here to help her process what is happening as I too know her friends as well as their parents. (Hopefully these skills will transfer to her abilities to stop and question her reactions, to give people the benefit of the doubt, and to stand up for herself when it is needed.)
  • She can take breaks and just relax, be alone, go jump on the trampoline, eat something, etc. as she feels the need for them. (This I believe helps her learn to be aware of herself and her needs and how to deal with them.)
  • She can start taking community college courses at 15 years old (which she wants to do) and take them one at a time to start, then build from there.  Colleges seem to be more accommodating to special needs and learning disabilities than the public school system, so that is a big plus.
So I imagine this list can go on and on, but the real point is that she does not suffer from a lot of the anxiety and depression that I see so many others on our Facebook support groups going through. Sure, she does have anxiety from time to time, but it isn't a constant.  She also went through a period of depression when she was bullied by some homeschoolers at a co-op we belonged to and promptly quit. It took us a few years to rebuild her self-esteem after that bullying episode, but now she is happy with herself again and I believe/hope she is now stronger and more able to fend off any such attacks in the future should they occur.

So although homeschooling isn't an option for everyone, it is certainly worth considering if you have a child with special needs/learning disabilities.

Sunday, May 12, 2013

"Same Journey Different Paths" --- I Co-Wrote a Book about Auditory Processing Disorder


So I suppose it is about time to mention on my blog, and not just the blog's Facebook page, that a book I wrote with 14 other authors about auditory processing disorder is about to be published:





Authors from around the world have come together to share their lives or that of their children living with Auditory Processing Disorder.
Description
"Once we were all mothers and children from around the world dealing with auditory processing disorder on our own; we felt all alone on our journeys, not knowing anyone else with this disability. There wasn’t a lot of information available to us about how to deal with this disorder and we were looking for advice, help, and just someone who understood what we were going through.

Then one day, in 
our own times and ways, we found each other via the internet and more specifically Facebook. We used this well-known social networking site to establish and/or join support groups for people with auditory processing disorder. Through these groups, we started talking to one another, sharing advice, telling our stories, and developing a relationship with each other. These support groups became our lifeline where we knew we could turn to others who would be there for us.

Through the internet, we who live far away from one another and have never even met each other in person as of the printing of this book, have grown to care for one another and each of our families. We laugh, we cry, we share our successes and help find answers to help each other. We came together to write this book in the hope it will help others and no one will have to feel alone again on this journey."

Same Journey Different Paths official website: www.apdbook.com



I have loved the entire process of working on this book from writing it and editing it to managing the process with my co-managers Nancy Pittman Outten and Bonnie Landau Weed.

It will be available for purchase in June from Stoelting Company (I'll post a link to them as soon as it is available) as well as on Amazon, and will be available both in paperback and as an e-book.


PS:  As a bonus, one of Hailey's drawings will be in the book!  It's just a sketch she did, but it is so wonderfully full of emotion. 

Wednesday, May 1, 2013

Super Ears - When Your Child with APD Can Hear Whispers From Across the Room

We jokingly say that our sweet Hailey has super ears.  With her particular aspects of auditory processing disorder, she can hear sounds far away as if they were close by.  Due to this ability, we cannot whisper anything and expect her not to hear it.

When she was just a little toddler, I remember having her sitting in the grocery cart in front of me while I strolled down the aisles.  Suddenly she would start nervously repeating "Baby! Baby! Baby!" and sucking her fingers and rubbing her "nonny" (her little blanket she carried around for comfort).  This was my sign that she was in distress and she was telling me why: some baby somewhere was crying.  So I would stop and listen and sure enough, somewhere in the distance, across the store, there was just the faintest sound of some infant crying.  It was uncanny how she could do this over and over again.

Now that our sweet Hailey is 12 years old, we forget sometimes that she can do this amazing hearing thing and we'll whisper something in an adjoining room to where she is. Of course, like most parents, we think we are speaking "privately" by doing this, but sure enough when we walk in the room with our girl, she asks a question or makes a comment that reminds us that she hears us, even when we think she does not.

Of course, with Hailey's auditory processing disorder, she hasn't always processed what she heard us whisper correctly and then we are left with either having to explain everything or say, "Sweetie, we didn't mean for you to hear that and we'd rather not talk about it with you."  To which comment she sighs, understanding and yet feeling left out.  (Then I worry that I need to talk to her because I have no idea what she thinks she heard.)

Does APD affect you or your child in this way?  Do you or he/she have super ears?


Lindsey Wagner from the 1970's television show "The Bionic Woman" (in the show her character had a bionic ear and could hear sounds from extremely far away).

Friday, April 26, 2013

"You tell me a story...." A poem by a 17 year old with Auditory Processing Disorder

I posted this on my webpage today, but then I realized that I would love to have it here, directly on the blog as well. (Sometimes I just post little snippets of things on the webpage directly, so if you haven't found us on Facebook, check out the link in the left-hand margins of this page.)

This is a lovely poem written by a 17 year old.  Her mother shared it in one of our support groups and I was so excited about it, I got permission to share it right away. I hope you enjoy it as much as I do.


"You tell me a story
But all I hear is a sentence
You tell me how you feel
But all I see is an expression
You tell me where to go
But all I see is a pointing finger
You tell me a secret
But it's already forgotten
You tell me what to do
But all I hear is confusion
I'm not one for gossip
I don't like the rumours
I'm not one for playing instruments
The music only runs through me
I'm not one for socializing
Although I like to see you smile
I'm not one for jokes
But I'll laugh with you
I'm not one to listen
But at least I tried"

By: Amy Feltham

Sunday, April 14, 2013

Processing Conversations with Auditory Processing Disorder: You Don't Always Understand

A few days ago I posted on Facebook a quote from a young woman* with auditory processing disorder.  She described how she understands maybe only a few words in a conversation and uses body language and context to try to figure out what the other person is saying.  Well, I knew my daughter did this to some extent, but I hadn't really been paying as close attention to this in a long time.  

At home, in an ideal environment with people she is very familiar with, my Hailey actually does very well at understanding most things; her only real difficulties at home seem to be in watching television as she often misses the conversations there.  That really isn't a problem though as we just pause the tv (we use a dvr and it is wonderful for this reason) and help her understand if she wants the help.  Of course most of the time she is content to just half-understand the words spoken, because let's face it, television is not usually very complex and is highly visual.

So we were going along in our nice little world of home without thinking too much of the real difficulties Hailey has with understanding what people say.  Socially, she has friends and the group aspect of conversations still make it too difficult to follow a conversation, so she just follows along at the edges of the group.  With her close friends, she has one-on-one conversations and that works well. We knew this and felt okay with it all.  However, with the information from the young woman that I posted on my Facebook page, I started paying more attention to where maybe her lack of understanding is causing her real problems.

As many of you know, Hailey ice skates.  She is also in a theater on ice class, which she really enjoys.  Mostly, she just has to follow along with what the others are doing and takes in her input visually.  Yes, she has to follow the music to stay on beat, but luckily she does not have the prosodic form of APD and so can hear the beat of the music well enough.  Well, her troupe is starting to learn a new program and her coach has decided to allow each skater some more individual input.  With this is mind, her coach took her aside to talk to her about what character she would like to be in the upcoming program; her coach has become aware that Hailey does not comprehend well in the group setting and so kindly spoke to her privately, making eye contact.

Hailey didn't want to make eye contact, kept shrugging her shoulders, and desperately wanted me to speak for her.  I tried to help without interfering and tried to encourage her to speak for herself; she is 12 years old and can handle these things. She did okay, but it was clear that she doesn't understand as much as I would have thought.  Later in the car, alone with me, she said some things to me about the conversation she had with her coach and she got quite a few things very wrong; she thought she heard things that were never said.

So even though her coach spoke to her one-on-one and she had me there to help, Hailey still didn't process it all.  The surrounding factors, I believe, were:

  • she was already worn out from a full day of skating and socializing to her ability in a group;
  • her coach has an accent;
  • she is somewhat intimidated by her coach even though she really likes her a lot - she sees her coach as someone with a lot of authority and also as someone she wants to please and yet doesn't always understand; 
  • and she is afraid that she might choose the wrong character in this particular scenario and end up in a situation that is too hard for her. (Talk about anxiety!)

All of this just helps me to realize that my sweet Hailey works really hard to make sense of what she does hear and unfortunately, she still misunderstands quite a bit if not in an ideal situation with a familiar context.  Being homeschoolers, I forget how much this is a problem because she is in an ideal environment most of the time and she is very familiar with our speaking styles and not at all intimidated by us. 



*Kendra Ross: "I have been called a liar by teachers, students.... I understand that APD is so hard to deal with and not understanding what someone is saying to you; the best thing I do that helps me when someone is talking to me and I have no idea what they are saying is reading their body language. If that doesn't work even if I don't understand what someone is saying, I use whatever words I do hear, and replay that back to them. Like today this one girl in my class was telling me about what she is going to do for her video, and it was a long hallway, she slurred. I had no clue what she was talking about until i got these words "needed.........talk.......teacher". Even though it was just 3 words, I got that she needed to talk to our video teacher about what she is going to do for her final. Then I wished her good luck. Now if I'm having a bad day, then I will just nod at the appropriate times until the conversation is over. Which happens, but it's best to try and understand the situation, even if it only 1 piece of info. It is key to have your [children] develop the skill of understanding a situation even just on body language. And the most important skill is understanding the situation and filling in the blanks. Hope this helps."

Thursday, March 21, 2013

Reading Parents Influence Children to Read


Yesterday, my sweet 12 year old was talking to me about reading.  She told me that reading was very hard for her to learn and it still takes a lot of work, even though she enjoys it and finds it valuable.

Then she thought for a while and told me that she desperately had wanted to learn to read when she was little because I am her mommy and I love to write and read all the time.  She wanted to be like me.

I'm not sure what to think of that.  I am flattered that she wanted to do something that I really enjoy, but I hope that I haven't influenced her in ways to be someone different than whom she is.

-----So I read this post to her and she smiled and laughed.  Then she told me that she wants to be an artist - not a writer - and so that is nothing like me. "Don't you know little girls want to be like their moms until they get older!" she added.

(I suppose I have learned to do a lot more arts and crafts due to her, too.  So maybe children influence their parents as well.)