Celebrate Their Accomplishments!

Wow have we come a long way!  Hailey has been ice skating since September and she is still adoring it and doing very well.  I am so glad that we found something that she can excel in, and where her auditory processing disorder does not make a profound impact on her ability to learn it.

Her coach and the director of the ice skating program gave her an award recently for having great sit spins.  She was so proud to receive such an unexpected honor.

She also has just signed up to participate in an ice theater class. This class has a lot of acting, ice dancing, and figure skating. The kids work in small groups and in large casts to present a play on ice so to speak. Hailey is extremely excited about this class and enjoyed her first one immensely.  

The coach for the ice theater program has an accent and speaks in choppy English, but Hailey is okay with this.  She agreed to not let any misunderstanding interfere with her learning and enjoyment, so she will tell the coach, "Can you please show me" when she doesn't understand what was said.  We ran this scenario by the coach and she was more than willing to accomodate.  

Now for the real kicker!  This particular coach is known to be a little tough in some ways. (I really think it might be a cultural thing and she certainly does not mean any harm by it.) She might say something like, "What you can't do that yet?" or "You should be better by now."  I made Hailey aware of this fact and told her that she might say something like that to her one day.  Hailey asserted that she would be okay if that happens, and she realizes that the coach is actually trying to motivate her. Wow!  I am so impressed. This child of mine is maturing into a very understanding, confident young lady.

Signs and Symptoms that Your Young Child Might Have Auditory Processing Disorder

We noticed at a young age that our daughter was different.  She was easily overwhelmed and didn’t seem to understand language.  Of course, we had never heard of auditory processing disorder but in hindsight, we realize what we were observing in her were early signs of her auditory processing disorder.*

Here are some snippets of what we saw in her as well as what others (therapists and educators) noticed:

Infancy:

• Cries whenever her twin cries and won’t stop until he stops.
• Has staring spells and sensory needs (prefers to sit in her vibrating chair and suck her fingers)

Interventions:  Mom created physical therapy to encourage play, cross body movements, scooting, crawling, and walking.  I also provided visual stimulation, tactile and sensory experiences, and the usual best practices for infant development. (I'm a teacher turned stay at home Mom who likes to study and implement the best practices for raising my children.)

Age 2 1/2: 

• Has staring spells
• Petrified of loud sounds (screams, digs fingernails and teeth into Mom’s skin to hold on)
• Stares blankly when spoken to or responds inappropriately (ex: wipes hands on grass when told  to wipe feet on mat)
• Complains “baby,baby” when a baby can be heard crying in the distance
• Complains “rain” and spaces out, sucking fingers with a terrified look on her face when we are in the car and it is raining
• Cannot listen to a story be read: just points to pictures and names objects, getting frustrated from   Mom trying to actually read the story
• Repeats last word said to her (echolalia)
• Doesn’t like television
• Confuses words (ex. Says “juice” for “milk”)
• Speaks only 1 word utterances

Interventions: In home speech therapy (Diagnoses of Speech and Language Delay) and occupational therapy (Diagnosis of Sensory Integration Disorder) 1x per week with daily reinforcement at home, listening therapy (“The Listening Program”), special education consultant (Diagnosis of At Risk for Learning Delays) 1x per month, a daily sensory diet was implemented, and we used picture cards to help with communication.

Age 3 1/2:  (Special Education Preschool: IEP Evaluation: Diagnosis of Young Child with a Developmental Delay in the areas of Communication and Adaptive Behavior):

• “Hailey demonstrates difficulty with sensory processing and modulation.  She received scores in the definite different range for auditory processing, touch processing, multisensory processing, oral sensory processing, modulation related to body position, modulation of sensory input affecting emotional responses, emotional/social responses, and behavioral outcomes of sensory processing.  Hailey spaces out and stares when she becomes overwhelmed.  She chooses to play with children who are calm.  She becomes overwhelmed by large groups of people and in noisy environments.”
• “Hailey’s speech is 50% intelligible to an unfamiliar listener when the context is not known and 70-80% intelligible when the context is known.”
• “Hailey does not show understanding of part/whole relationships, follow two step related commands without cues, or identify pronouns.  Hailey has difficulty understanding negatives in sentences, making inferences, and difficulty in categorizing objects in pictures….She does not tell how objects are used, answer questions logically, or use words to describe a physical state.  Hailey is very quiet and withdrawn at school.  Hailey rarely talks to peers or in a group.  She needs to be encouraged to use her words and not just nod her head.  Questions need to be repeated for her.   She has trouble blocking out background noises.  Hailey has word retrieve, decoding, and short term memory issues.”
• (I have to add that she was noticed as being "great at puzzles", "hard working", "kind", and "interested in new things".)

Interventions:  2x per week special education preschool (1/2 day) with focus on speech therapy, occupational therapy, and social skills training; continued sensory diet.

Age 4: (Special Education Preschool: IEP Evaluation: Diagnosis of Speech or Language Impairment):

• “Hailey continues to use incomplete sentences, which contribute to some of her unintelligibility….Hailey has not yet mastered her goal to initiate contact with the other children in her classroom and socialization skills are one of her biggest concerns.  She has not been observed consistently responding to other children’s initiative and chooses to play alone or alongside other children with little verbal interaction.  Hailey rarely verbalizes in large group activities unless prompted to do so and when she speaks she uses a very quiet voice.”

Interventions:  4x per week special education preschool (1/2 day) with focus on speech therapy, social skills training, and academic preparations; continued sensory diet.

Age 6: (Private Speech and Language Evaluation: Diagnosis of Mixed Expressive/Receptive Language Disorder):

• “Hailey’s overall speech intelligibility is approximately 75% in a familiar context and around 65% in an unknown context.”
• “Hailey successfully completed tasks with one or two commands and location concepts.  She had difficulty when the commands increased in length, with sequence concepts (ex. second, middle, fourth), and with inclusion/exclusion concepts (ex. all but one, neither)."
• “She demonstrated significant difficulties in recalling sentences.  She was able to recall sentences of up to 5 words successfully however she was observed to paraphrase sentences (ex. The given sentence: “The rabbit was not put in the cage by the girl.”  Hailey said: “The rabbit didn’t got in the cage because the girl.”)  She had difficulty imitating sentences of 5+ words in length. “
• “It was observed that when Hailey had difficulty retrieving a word, she would often use the word “helicopter"."
• "Hailey is a great little girl who enjoys interacting with people and exploring items in her environment.  She demonstrated appropriate eye contact and enjoyed carrying on conversations with the therapist.  She was observed to have difficulty answering questions and maintaining topics.  Hailey would often look to her mom for support when answering questions, ex. “What did you do at the birthday party?” and “What is your friend’s name?”
• “Hailey has significant difficulties with working memory tasks.  She was observed to recall the last number of a 2 number sequence (ex. “3-8”, Hailey: “8”).  However, she was able to recall a number sequence of 3 numbers when movement was included (ex. she could recall three numbers accurately when she walked one step for each number). She was able to recall a number sequence backwards of 2 numbers when incorporated with walking backwards.”
• “Hailey was able to blend syllables (ex. sail   boat = sailboat) with maximum cues and model with 1/5 accuracy.  She was able to detect rhymes (ex. cake-lake) with maximum cues and a model with 3/6 accuracy.  Hailey was able to identify the initial phoneme in a word given maximum cues and a model with 2/5 accuracy.  She was unable to participate in two syllable detection (ex. starfish, take away the fish = star).  These difficulties indicate a phonological awareness deficit.”
• (I have to add that she scored really high on determining the relationships and associations of objects meaning she understands the meanings behind words: vocabulary.)

Interventions:  Private speech therapy 1x per week (utilizing movement and visuals) with daily reinforcement continued at home, listening therapy (“Sonomas Listening Program”), continued daily sensory diet.  Homeschooling for academics and small playgroups with parental support for social skills.

(From that point on we continued speech therapy until Hailey was almost 9.  She was diagnosed with Auditory Processing Disorder and we still continue to use strategies for accommodating auditory processing disorder.  She was further diagnosed with Dyslexia and Visual Processing Disorder.  She did visual therapy to help with the visual processing disorder and we hired a private reading specialist to teach her the Lindamood Bell LiPS program.  We pulled her out of public school after the special education preschool program ended and they wanted to mainstream her into kindergarten without support.  She has been homeschooled ever since and continues with her sensory diet as needed.)

*As you probably noticed, Hailey’s receptive and expressive language skills were noticeably problematic for her from a young age.  Not all children with auditory processing disorder have such extreme problems with language.  However, for her, we believe her extreme auditory processing problems were the reason she had such difficulties with language.

So this is NOT a portrait of what all children with auditory processing disorder look like at a young age.  It is one portrait and maybe it will help others who see similar things in their young children to find some help and start on a path to answers for them.

Happy APD Awareness Day

In 2009, a Minnesota teen named Megan Muehlberg (2012 Miss Minnesota Teen Internation 1st Runner Up) worked with former Governor Tim Pawley to make April 4, 2009 a statewide Auditory Processing Disorder Awareness Day.

To follow in her tradition, the APD support groups on Facebook (combined to be over 1000 members), have decided to spread the word internationally and "Break the Silence on this Silent Disorder" by honoring April 4, 2012 as International APD Awareness Day (even if no official has proclaimed it - maybe we can work on getting that recognition next year).

Two amazing teenagers with Auditory Processing Disorder created these images to spread across the internet:

APD Teen 23  (her blog is: APD Teen)

APD Girl (her blog is: The Daily Struggles of a Teen with APD)

Book Review: "I Get It! I Get It! How John Figures It Out"

I just received my copy the new book I Get It! I Get It! by Loraine Alderman and Yvonne Capitelli.  As far as I can tell, it is the first book written for children about auditory processing disorder.

Overall, I think it is an excellent book.  The story flows well and definitely shows the main character John's frustration with not "getting it".  It also explains what auditory processing disorder is in a simple, easy to understand way.  There is even some great helpful advice for parents and teachers.

Of course, it doesn't explain everything about auditory processing disorder and neglects to point out the social difficulties that come with the disorder or some issues such as the fatigue that usually accompanies the disorder due to the extraordinary effort it takes to process auditory information.  (Co-morbid common conditions such as dyslexia, discalculia, sensory processing disorder, or anything else are also not mentioned.)  However, I believe the intent was to keep it simple as the audience is elementary aged children.

I would definitely recommend this book and I sincerely hope it is the first of many more to come.

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"

---Tracy Chapman, "Talkin' Bout A Revolution"

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!

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.

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.