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.

Thursday, March 29, 2012

Let's Have a Revolution! Schools Need to Radically Change

"Don't you know, they're talkin' bout a revolution
It sounds like a whisper"

A friend of mine wrote a post recently about dropping her daughter off at school and the feelings and thoughts that go through her mind every day.  Her hopes: "we drop them off in the morning and hope (beyond hope) that they survive the day, are happy, have friends and learn something along the way (in that order)." Her fears: "It wears our children out, the school yard has the power to break our children, and the teachers, they have the power to make or break our kids (not unlike my last blog - just hoping that the teacher will be the one to lift spirits and encourage our children to believe in themselves and their ability)." 1

This friend of mine has a child with auditory processing disorder, like my daughter, and so she has difficulty not only with academics, but also with socializing.  If you have trouble processing language and only hear and process 50-70% of what is being said, then of course socializing is harder.  The school yard can be a nightmare to navigate for children who hear and process 100% and let's face it, bullying occurs on school yards.  Children with disabilities, especially children with what are considered "hidden disabilities" (those that are not readily noticeable to peers), are more likely to be bullied than the typical child - which is high enough.

But I am not writing this post about bullying.  I am not even writing this post about learning disabilities.  This post is about the real need for our schools to radically change the way they function for ALL children.  I'm talkin' bout a revolution!

Children are more than their academic success.  Children are whole people with needs that are EMOTIONAL, PHYSICAL, SOCIAL, INTRAPERSONAL, INTELLECTUAL, and let's not forget the need for PERSONAL/CREATIVE EXPRESSION.  Schools focus only on intellectual. (They may touch on the others, but it isn't their objective.) Why is that?  Are we as a society saying the others aren't as important?  If a child learns to read but in the process loses all sense of self-esteem, what have we done?  Is that really a good idea?

Why do children go out onto a playground with hundreds of other children in a Lord of the Flies2
scenario: survive or die?  The teachers don't go out there with them to help them learn social skills.  The teachers don't monitor to make sure bullying is not occurring (one or two aids to supervise hundreds of children is just not enough). The teachers don't actively teach self-advocating skills, empathy for others, how to include everyone, and sharing and taking turns mostly stops being taught in kindergarten.(Sure teachers do their best to encourage these character building skills, but it's not their prime directive.)

Why aren't children encouraged to pursue their own interests?  Why are they not allowed to continue studying something they are interested in or take as much time as needed on things they find difficult?  Why are tests timed and if they do art, it must be completed in the 30 minutes allotted to art that day?

Why are children grouped according to age?  Are we saying all 9 year olds are the same?  Wouldn't it make sense to allow children to be taught in groups according to their learning style, aptitude for that particular skill, and even amount of interest?

Schools are not conducive to the development of the whole child.  Schools do not treat children like real people; children are being processed through a system that seems to think you can plug slot A into slot B and somehow get the wonderful, unique person that each child is meant to be.

And if you say they can develop their interests, learn all the emotional, social, and intrapersonal things in their free time, I ask you this:  How much free time does a child have when they spend 1 hour eating and getting ready for school, 7 hours in school, 2 hours doing homework, 1/2 hour eating dinner, 1/2 hour bathing and getting ready for bed,  and 10 hours sleeping each day?  That leaves 3 hours each day to do whatever chores their parents might want them to do, play with their friends, spend time with their family, and figure out what they want to pursue for their own interests and pursue them.  This doesn't even include the kids that are put in after school care programs or other extra-curricular activities like sports and clubs that have their own set of agendas.  Oh yeah, let's not forget down time!  All children need time to just relax and destress from their day.  When is that supposed to happen?

I am advocating for revolution!  I want a radical change in the way schools work with children.  Children are whole people with more needs and more value than simply forcing them through a systematic academic factory, hoping they'll survive.

1) Nancy Outten, "Auditory Processing Disorder: Holly's Story, coping with and learning about this disorder", March 29, 2012
2) Lord of the Flies is a novel by Nobel Prize winning author William Golding publish in 1954 about a group of British boys trying to govern themselves on a deserted island.

Update:  Check out this link to a TED talk by Sir Ken Robinson who expresses so amazingly well his ideas about a "learning revolution."  Sir Ken Robinson: Bring on the Learning Revolution!

Saturday, March 24, 2012

Mini-Panic Attack Like Only A Mom With A Child with Special Needs Can Know

Today I went to the informational meeting for my daughter's ice skating show.  Everything was going along well when suddenly I heard that parents are not allowed in the locker rooms with their child.  Not only that but the children have to stay in their designated locker rooms at all times except when they are performing.

My heart started thumping as my mind raced over the problems with this situation: my daughter will be stuck in a room with 20-30 noisy kids not being able to process much of any speech due to the noise.  She won't necessarily know what she's supposed to be doing when the person in charge tells them to put on their skates and get ready to go.  She hates a lot of noise; she hates chaos; she hates to feel lost and most likely, she'll start to feel overwhelmed locked in a room full of  20-30 bored, anxious, loud, moving children.  She might begin to feel panicked. Performing in the show is enough anxiety to learn to deal with. We don't need to provide anymore.

My hand darted up like the child desperate to get called on.  "My child has a communication problem.  Can I stay in the locker room with her?"

"You'll have to volunteer to be a locker room attendant for all performances and be willing to help ALL the children."

To myself I thought, well of course I'll help all the children as much as possible.  But I cannot be solely in charge of all of them because my daughter will need me and that is my primary concern.

So I calmly stated that I would lovingly help all the children, but I would need someone else to help - I could not possibly do it alone due to my child's needs.  What do you know, a woman sitting beside me volunteered to be a locker room attendant with me for all three performances.  She has a child in the same group, and she said she works with senior citizens who have auditory difficulties (usually due to hearing loss) so she understands my concerns.

Phew!  Everything worked out just fine - panic attack over.  I love it when kind people provide.* Once again, asking worked.

*As an added bonus, the director of the program is going to coach my daughter's group performance number and she made a point to let me know she is aware of her needs and will be considerate of them. I love this ice skating program.

Saturday, March 17, 2012

Friends Like Me: How Facebook United Kids with Auditory Processing Disorder

Friendship is born at that moment when one person 
says to another, "What! You too? I thought
 I was the only one!" by C. S. Lewis 

Good friends really do make such a difference in one's life.  A few months ago, some of the mothers in our Facebook support group for parents who have children with Auditory Processing Disorder (APD)* decided to get our children in contact with each other.  We live around the world, but a group of us all have girls around the same age with APD.  Inspired by a group of teenage girls we know who have APD and have expressed how much their friendships with each other have been so beneficial to them, we had our girls start writing to each other. Gradually they started to get to know each other and recently they started to Skype and text with one another. It has been fantastic!

If you've been following my posts on this blog, you will remember the post I wrote about Maslow's hierarchy of needs.  One of the important foundations for building self-esteem is to provide a sense of belonging.  Having a processing difference/learning disability can sometimes make fitting in with the other kids a difficult thing for our children.  Many a parent can tell you how our children regularly express the feelings of being singularly different and no one truly understanding what life is like for them.  So providing our girls with not only other people who have APD, but girls their own age who have APD, has provided them with a sense of belonging that goes beyond what any of us probably ever imagined.

So thank you Mark Zuckerberg for creating Facebook!  I know Mark never intended or even imagined that Facebook would be helpful to a group of children with Auditory Processing Disorder, but in an indirect way, it has connected people who would not have otherwise even met.  (Also thank you Niklas Zennstrom for creating Skype which connects our girls face-to-face.)

* The group is for both parents of children with APD and individuals themselves who have APD.  My post from February 27, 2012 has the names of these groups for anyone who is interested.

Wednesday, March 7, 2012

APD Awareness: Having APD is sort of like Speaking a Foreign Language

Auditory Processing Disorder (APD) can be subtle and because of this, children with APD are often penalized as being non-caring, not-intelligent, and/or not-attentive.  The reality is so far from this non-understanding viewpoint.

Imagine if you can being in a foreign country.  You know the language to some extent, but you have to process everything you hear from the foreign language to your native language to understand and back to the foreign language to communicate.  It takes time.  Sometimes the person speaking to you doesn't realize this time delay and they speak too rapidly for you to process everything.  Or maybe people are speaking over each other and it is difficult to hear exactly what is being said.  So you process about 2 to 3 words maximum out of every sentence.  You try piecing this fragmented information together to make some sort of sense.  Of course by this time the person speaking to you thinks you are rudely not responding.  Then, when you do say something, the person looks at you like you are a complete idiot because your response is actually not accurate for the conversation.  You try to apologize and explain that you speak a different language and you're doing your best.  But what if they don't believe you?  What if they think you are simply  non-caring, not-intelligent, and not paying attention?  This happens to people with APD all the time!

Of course, just like you can translate the foreign language if given the time you need to do so (and maybe some clarification here and there), so can our kids with APD.  You can also speak intelligent sentences and express your wonderful thoughts and ideas even in the foreign language if given the time to do so.  Sure you might forget a word here or there or conjugate a verb incorrectly, but that's really no big deal so long as the person you are speaking to is understanding and patient.  It is no less important that our children with APD have people be understanding and patient with them.

It is my hope that the world becomes aware of Auditory Processing Disorder and uses that knowledge to show compassion to people with APD.  Be understanding!  Be patient!  Give them the time and respect they need to shine!  They ARE intelligent, attentive, and caring.