For the Record...

For the record, there is nothing wrong with my children.  Not a thing.  They process what they hear differently than I do.  That is the way their smart brains were wired to work and it is perfect. 

They do not have a disability... that is the label given to them by some professionals somewhere who didn't really understand what was happening in their above average intellectual brains.

I agree 100% that auditory processing makes it more difficult to hear in a regular classroom environment.  Throw in neat little things like open classrooms, co-teaching and group projects and we have a regular nightmare for those who struggle with auditory processing.

I also agree 100% that the processing part makes it difficult for my kids to learn in a traditional setting where the teacher lectures and the kids take notes.  My kids were created to get their hands down and dirty with learning.  If you want them to understand how something works, please allow them to take it apart and put it back together.  (wait... wouldn't they all learn better that way?) 

I will also concede 100% that my kids have brains that work like an electrical wiring system.  If you give them a random piece of information, it won't stick.  Just like if you were wiring a building, you start with a base wire that is hooked to electricity and send the signal out to where it needs to go... that is what my kids need.  They need a spark to build on.  They need new information  linked to what is already in their brains to have it make sense.  Just like you would not just put an outlet on the wall with no wires going to it and expect it to work; don't throw out random information and expect them to file it in the right place... (once again... don't we all do better this way?)

We do our kids a disservice when we label their 'superman' hearing as a disability.  They hear the term and start to think that something is wrong with them.  It is not wrong, it is different.  We, in the field of education, need to understand how this wiring system in the brains of all those kids we have labeled as 'learning disabled' really works and then figure out how to bring out the best in every child with every wiring system. Their differences are not 'disabilities' just because the standard way of teaching is not the best way for them to learn.

As parents, when we figure out what is going on with these smart kids, we need to see the label as an explanation, not a crutch.  If my child has a 'learning disability' (and for the record, I do not like this term) I need to educate myself as to the ways my child will struggle and teach them how to succeed as best they can in the traditional classroom setting that works for 90% of the learners out there.  Then I need to figure out how my child's brain works and find ways for my child to shine so that he/she can become the best, most self-confident and successful adult he/she can become.

Something to sing about... Music therapy

For me, this is really coming full circle.  For years, I have talked to people an  why music works for those with any sort of learning  disability.  Now research is finding even more ways to back up the point...

First of all, by now, we all have a basic understanding of the brain and how it works.  We have a stimulus enter the brain, let's say a written word.  The brain takes that information, interprets it and acts on what it has learned.  When every system is working correctly, this is done with relative ease. When we start to label someone as learning disabled, we find that this system has developed a permanent glitch. Information goes in but somewhere on the way, it gets lost.  For a dyslexic, the visual cues are not processed correctly.  For someone with auditory processing disorder, it is the spoken cues that are lost or processed slowly enough that comprehension is difficult.

So, why music?  Let's keep checking out the way the brain works.  When a person looks at a piece of music, each dot on a line has to be 'read'.  That dot becomes a letter.  The brain has to take that letter and translate it to specific way to play an instrument.  All this happens at such a rapid rate that the person can play a piece of music.  The addition of the need to change the dot on the line to a letter that requires a certain body movement increases the processing speed of the brain.  For those with learning disabilities, increasing the processing speed is critical to overall success.

Let's keep on the brain study.  When a person reads a book, studies have shown that a specific area of the brain fires up and responds to the stimulus.  When a person reads a piece of music, the area of the brain that fires up is different.  This is good for two reasons.  One, for those who struggle to learn to read, presenting the information as 'music' will fire up a different area of the brain and encourage more success.  Secondly, for those who need a multi-sensory approach learning information through music provides that connection since it is processed in a different area of the brain.  (think about the ABC song and how easily even very small kids learn non-sensical letters of the alphabet)

On a totally different note...(pun intended) several studies have looked at music and the affects on the the brains of those who are stressed or have ADD/ADHD.  For one study, scientists logged the brain patterns before listening to classical music and then during.  Those brain patterns were compared to the patterns of those without ADD/ADHD.  What they found is that listening to classical music normalizes brain patterns.  So, when I start a training session in which I strengthen skills for those with learning disabilities, I start with a hands on activity and classical music.  I can watch the affect of the music on a stressed out person.  It is wonderful to see.

So, when I see facebook questions about music... I always answer with a resounding YES!!!  In one way or another, music is good for ALL learners, but especially those with a learning disorder.

Self Advocacy- A mom's perspective

When I write posts in response to comments or questions on Facebook or other social media... Often, the ones that get the most response are when I write about teaching my kids to advocate for themselves.

Finding out that something about your child is going to make it harder for them to get through life is a difficult thing.  When they are born, we just want them to have it easy. We want them to be healthy. We want them to be happy.  When they hurt, we want to take away their pain.  To find out that something isn't quite the same and that they will struggle is just devastating.

We dealt with illness starting when Seth was 2 until he was about 4 1/2.  High fevers, ear infections, pneumonia, unexplained noise bleeds, chest surgery, infections, tonsil and adnoid removal, speech struggles.  He was a sick little boy.  I learned the true meaning of the foot prints story.  The stress and emotions are over whelming and I'll never forget what I learned.  I have true empathy for parents with sick kids.

We got through all that and started to breathe, just a little.  Something still wasn't right with our little man though.  He was still struggling.  A year later, we got the diagnosis of auditory processing disorder.  We left the clinic with a handful of papers and words that still ring in my ears.  "He's going to have a hard time in school.  But there isn't anything you can do about it.  He's just going to have to learn to cope."

He struggled so much in early school; mostly socially.  He has prosodic presentation of APD and it's hard.  It's hard to be his mommy and listen to him not understanding other people.  It's hard to see him misunderstand jokes or sarcasm or just tones of people around him and watch him hurt.  He's almost 19 now and it still worries me.

What has been interesting for me is empowering him.  When he was a sophomore in high school, he came home one day quite proud of himself.  He was having a hard time hearing in science class.  I had told him to talk to the teacher, go up to his desk, stay after class.  I wanted him to learn to take care of himself.  That day, he had raised his hand and simply told the teacher, "Could you repeat that please.". When the teacher frowned, he simply said, "Remember, I'm half deaf.". The teacher smiled and repeated himself.  At first I was kind of bothered by what he had said and I asked him why he had said that.  He responded, "when I try to explain how I hear, they don't understand.  But if I say I'm half deaf, they understand and they help me." What could I say, he had figured it out.  He was advocating for himself.

On another occasion, his prosodic presentation was really bothering him.  He has an uncle who is the king of quick come backs and sarcastic responses.  Seth has a hard time getting them.  During one visit, he made a comment to his uncle that with his hearing, he really couldn't tell if he was serious or not.  The uncle looked at him and said, so what do I need to do, scratch my armpit or something if I'm kidding?. Seth responded that it would help and they did that for the remainder of the visit.  It's a running joke now.

Ben has struggled a bit more with self advocacy, but he's getting it.  He now knows that if he's struggling with test taking or assignments or notes, he can ask.  But it's  hard.  Now my nine year old it's starting to have some difficulties with tasks at school.  I am trying to teach him to ask and try to get help.  With him I still have to step in quite a bit, he's little. But I try to make him ask for help first.

I don't know what it's like to have a child with a terminal illness.  I don't know what it's like to have a child with a physical disability.  I can't speak to those struggles. I do know what it's like to worry about a child who appears to have a healthy, fully functioning body and watch them struggle and not understand.  I have been told, (by a family member) that my extremely bright child probably just wasn't cut out for private school.  I have been told that my three boys are lazy.  I've been told that they weren't performing up to their ability level.  I've been told they need to apply themselves.  I have heard the lines, I've worried. I've studied. I've written.  I've been angry. I have cried.  I continue to watch them struggle and I wonder what the plan is for their lives.

I've done all this while feeling very blessed that my children have given me the ability to have a sensitivity to the struggles of others in a way I never could have imagined.  Through them, I have also been blessed to be able to tell a story and relate to others through the unique perspective of someone who has watched and learned with and struggled with 4 different stories of becoming successful when your brain works just a little different.  I wouldn't want any of my children any other way.

WARNING!!! WARNING!!!!

I have discovered there are certain catch phrases that get my attention on a regular basis anymore.  They are phrases that I have heard said about three of my children.  They are phrases that are meant to set a tone for action and understanding.  Anymore with me, they perk my ears up and cause me to stop in my tracks.  What are these phrases?

If only he would apply himself.

She needs to take her school work more seriously.

He just doesn’t seem to be performing up to his ability level.

She is just being lazy.

He just needs to buckle down and put forth more effort.

I have heard all these phrases applied to my kids, especially Ben.  If you talk to him, you can tell he is very bright, possibly gifted.  Then you look at his work or test scores and assume that he is just a lazy child who isn’t taking things seriously. 

Honestly, you couldn’t be further from the truth.  In elementary school, Ben came home almost every night exhausted.  He had spent so much of his day trying to concentrate and hear what was going on that he was just done at the end of the school day.  His outgoing like-able personality is honestly what kept that child in the good graces of his teachers. 

What are teachers really saying when they make a comment such as those above?  They are saying that through observation, they have seen that the child is either average or above average intelligence level.  But the work they are turning in is not.  They are saying that this child should be getting excellent grades on tests, but he is not.  When that happens, they are assuming that the child is not trying as hard as they can. 

Any more, these phrases from teachers cause me to really pause.  What I have learned in the past 10 years of working with learning disabled kids is that every one of them has put forth their best effort.  Some of them have put forth their best effort for years only to have subpar grades and be called lazy.  None of these average to above average children asked to be considered slow or lazy.  They often have to work two or three times harder than their peers to get grades that are far lower. 

Eventually, they don’t try as hard.  Eventually their self esteem suffers.  Eventually they question themselves and start to feel inferior. 

As I talk with groups of teachers, I think that is one of the take aways I want them to leave with.  If you are thinking that a child in your classroom is not performing up to his or her ability level, I want them to start trying to figure out why.  

Growing Up With Prosodic Presentation of APD

When I give talks, I tell people that the prosodic presentation can be the most difficult piece of the puzzle.  My oldest has it and so does my husband.  Teddy has it too, but it looks different in him.  Prosodic means that while you are trying hard to decode exactly what words are being said, you loose the ability to decode the meaning of those words.  The question, "What are you doing?" can either be said by someone showing interest or someone who is questioning your motives.  For someone who has the prosodic presentation, the latter is often assumed.

For Seth, it has been a struggle all his life to try to realize that people are not always mad at him.  Because he doesn't 'hear' the irony or sarcasm in someones voice, he usually assumes the worse.  He hears people being upset with him and angry with him, all the time.  In the hallways at school, he was always questioning why someone would call him a name or why teachers were singling him out.

When he was in second grade, he was the child who thought kids were always picking on him and laughing at him.  He sat in the back corner of his classroom and cried when others talked to him.  At recess, he often hung out by the teacher so that he felt safe from childhood messing around.  He switched schools in middle school and finally started coming out of his shell a little bit.  He started to make friends with a couple of great kids who remain friendly today.  When he started high school in a small rural environment, we were very concerned for him.  His graduating class of 40 only had 5 boys and they didn't share any real interests with him.  Seth did begin to make friends in high school though and gained a large group of people who were friendly with him.  Seth also began to advocate for himself which made him a much more successful student and helped with his self confidence.

Becoming involved in sports such as cheerleading and baseball and in clubs like DECA and FFA helped him gain even more confidence.  In college now, Seth continues to struggle to maintain successful relationships with his peers.  As his mom, I continue to try to encourage him to watch body language and assume people are being good, but it is hard.  Seth is wanting to leave home and go out on his own for school.  I continue to pray for him as he moves forward with his life.  His potential is huge.  He is bright and good looking.  He is a real go-getter having started his own business and financed a vehicle already.  I hope he continues to grow in understanding of the way his APD affects his social relationships so he does what I want him to do most; be happy.  

Some of the things I have learned...

Patience is a virtue that a mother of a child with learning issues must learn to not only develop but to hone and practice... DAILY.

Vacation:  Teachers are not teaching because of the vacation or because it is an easy pay check.  I was a classroom teacher first... I absolutely know this for a fact.  Teaching is physically, emotionally and mentally exhausting.. five days a week.  You wake up and go to sleep thinking about the child you can't reach or the one that you did.  You cry because you don't understand how anyone could do ___ to a child and justify it.  You see the kids in the grocery store and at the gym and in church.  Teaching is a way of life, not a job.  You do it because you love it.  

Cooler Heads:  Keeping this in mind, when your child struggles to learn in the way that the one teacher you seem to have every year, who will not work with your child, will help you not tear her head off when you have to point out; for the 12 time, that your child is supposed to have notes provided to him.  It also helps to type out that email... the one you wrote when you were on the 3rd hour of homework and headed for the 5th meltdown and send it to a friend not to the teacher.  Then retype that email the next morning when level heads prevail.  

Claws:  If your child is the one and only you have to struggle with to get through school and your child attends a large school, you are in luck.  You can show those momma bear claws a little more often and get accomplished what you need.  If you have 4 children, 3 of whom need understanding, you have to constantly figure out what the line is between supporting your first child and making sure you can show your face to that same teacher when the 4th child enters that same classroom, 10 years later.

Flexibility:  There are no right answers.  What is right for this child, this year, may not be what works for the same child the next.  It definitely will not be what works for another child.. no matter how much sense it made.  Each teacher understands things at a different level.  Learning to explain exactly what things are like for your child in many many ways will help each teacher better understand what they can do to help. 

Self-Confidence/Self Advocacy:  Quite honestly, the best and most important thing you can do to make sure your child succeeds is to make sure they understand a couple very important things.  First, they are absolutely perfect just the way they are.  Because they are not wired the same as most of the rest of their class makes them unique and amazing and you wouldn't want them any other way.  Just because they can perform well on one certain test does not mean they are not smart, it means they can't perform well on that test.  Second, they have the right to ask questions until they understand.  They can ask all the questions they need to get the page or the assignment or what ever they need to succeed.  If the teacher is not cooperative, then you will step in and make sure they do.   No matter what, you have their back.  

Heart Break

About a week ago, my heart broke. Teddy is our little bright light. He is energetic and outgoing and has the most adorable brown eyes that people have been falling for since he was a tiny baby. He has had a girlfriend since birth and women of all ages who just are totally enamored with him. He runs and plays and jumps on the trampoline and rides his bike and bangs things together... he is all boy. He has always been quick to pick things up and loves to figure out how to take things apart and figure out what makes them work. He builds with legos and blocks and train tracks and rocks and sticks... what ever he can find.

A couple weeks ago, he came home and told me I was going to be mad at him. I smiled and said, what did you do? He told me that when I went to parent teacher conferences his teacher was going to show me a paper he had done that he had gotten a "D" on. I asked him what happened for him to get a "D". He told me something about a classmate who had been making noise and that he hadn't heard it explained to him what he was supposed to do and so he did really bad. My heart broke. Up until this year, he has gotten checks on his grade card because he was making the progress expected for him or a plus if he was doing better than he needed to be. This year is the first year he is receiving grades and my little baby got a "D". He didn't want a "D". He wanted to keep getting good grades because he is trying his hardest. He wants to continue to feel like he is smart because he is; but he got a "D". I smiled and assured my little boy that just because he got a "D" on a paper, his mommy still knows he is smart and, as long as he tries, she will not be mad at him.

Teddy is 8 and has APD. He struggles to hear when there is back ground noise present. Teddy yells most of the time, I don't think he knows what it means to use an inside voice. He is not quite as unorganized as his big brother Ben, but close. You always know the last place he was because he just drops things where they leave his hand. Teddy is prosodic, but it shows differently than it does with Seth. He just dissolves when someone yells at him, he can't take it. The harsh tones are like physical blows to him. He also is the little guy who stands up for the kids in class who get picked on, loves frogs to death and wants to take care of every stray he finds.

Second diagnosis...

Ben, our second son, is a social butterfly and has been since birth. He repeated his first word at 4 months..."BOO". We didn't realize he was struggling until he was in middle school and had gone from one teacher who knew him well and worked with his short comings to 7 teachers who didn't. It was the same time when he went from A's and B's to D's and F's. It is also when we realized that in our household, APD was a hereditary issue passed down from father to sons. It was the year Ben was diagnosed with APD and we began recognizing symptoms in his then 4 year old brother.

Ben struggles with volume control. In trying to hear his own voice in his head like he should, he raises his voice above the level he should. What stands out in presentations for Ben are associative and output /organization. His short term memory is almost non-existent and always has been. Before we knew what was going on with him, we called him 'squirrel' because it was so easy to get him off task. Ben does not organize his personal space at all, at home at school... anywhere. To me, his space looks like his mind. Information goes in, but it is all over the place-unorganized. His key phrase for me is, "wait... what?" I know now that he says this when he is just not processing what is going on and needs it repeated or more time. My goal with Ben is to create a successful adult... school will be something we get through on the way there.

How is he doing now???

A lot has happened since that initial diagnosis. We now have four children; three boys and a girl. That 5 year old boy is 18 and in his first year of college. We have had two more children diagnosed with auditory processing disorder and I have, of course, developed quite a passion for the subject on how to help them. When our oldest was diagnosed, we had no idea how to proceed. We thought that his illnesses were the cause of his hearing problems and had no idea the ways in which an individuals brain is wired, affects the entirety of the person. Seth, our 18 year old, struggled socially all the way through school. The overwhelming presentation of APD for him is called prosodic. It impacts the way in which a person intakes language. While his brain is struggling to sort out all the sounds and make sense of what he is trying to hear, his brain does not process things like sarcasm or humor. He has misunderstood so many social interactions over the years that it has been a constant source of stress for him. He is getting better as he grows into an adult, but it is still hard. He also does not read other people's body language or pick up on social cues very well. Seth is working hard to learn to read body language, but he may always struggle with it.

An APD Life- How Our Journey Began

When I first learned about APD, I had a 5 year old and a 3 year old child. My five year old was a very bright little boy who seemed to loose track of details, forget things I thought he should remember and whose attention it was hard to get. He had survived atypical pneumochoccial pneumonia with plural empyema, fevers over 107 degrees, chest surgery and surgery to remove his tonsils and adenoids. Despite my extreme gratitude for his health and well being, there was a nagging feeling that would not go away that something was amiss still. He had been in for two hearing tests and we were told that he could hear perfectly, I just didn't buy it. I knew that child could not hear me a lot of the time. I can not say enough good things about Children's Mercy Hospital in Kansas City and the wonderful attitude they have there of listening to the concerns of parents. That attitude saves lives. When parents come in with concerns and, instead of just going with the current medical opinion, they sit and listen to what parents are asking, they save lives-yes there is another story there and it has to do with the pneumonia! Today, it is a story about an audiologist who did a hearing test on a five year old. The results showed his hearing to be normal. She came out and looked at a weary mommy and listened to her. Then she sent the five year old for further testing. That further testing is what led to the journey into the world of a person with APD.