Percieved Disadvantages - A Blessing?

Recently, I just concluded a book study with the women’s ministry at church. The book:
 

Soul Print by Mark Batterson
 

It was a good book, but some of it really hit home with me. For instance:
 

“perceived disadvantages often prove to be disguised advantages because they force us to develop attitudes and abilities that would have otherwise gone undiscovered.”
 

Like, a dyslexic who develops a proficiency at oral communication, a deaf boy who becomes a composer . . . ah hem . . . Beethoven.
 

So, according to this, Alyssa’s CAPD and resulting social issues and depression could cause her to develop other skill sets and, I have to say, that ray of hope might as well be a glorious rainbow!
 

So, let me take just a minute to brag. Although my child has CAPD and is disabled in some areas of understanding, she still maintains very good grades at school (she has maintained A/B honor roll for 2/3 quarters so far), so there must be compensatory skills being developed somewhere.

My Life - Life Through The Eyes of My Ten Year Old (With a Little Creative License)

The following with my oldest's last assignment in elementary school. I just had to share:

Before you start reading. Read this. This story tell the life of (...) It also tells what happened when she was younger. Read about her life.

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Chapter 1
When I was 1 my mom and me moved from (one state) to (another). When we got there I was a sleep. I also went to live with my Grandma. When I was living there I said mama which was my first word. Also my first food that I ate the was peas. I used to not like peas. But now I do. I also used to cry when my mom put a bottle or a passifir in my mouth. I alway used to suck my thumb. That is why I would cry when my mom put a bottle or passifir in my mouth.

Chapter 2
When I was 2 my mom and me got our apartment. Every saturday and Sunday my mom and me would wake up and go swimming for 4 hours a day. We were alone which was how wer liked it. Once I found a frog in the pool. We tried to save it. But the chlorine killed it. My mom said that if you go in the pool and then not wash your hair will turn green I used to not believe here, but now I do.

Chapter 3
When I was 3 I started preschool When we took naps I never went to sleep. I had half day every day. I never had to do work it was just fun and games. I always got picked up by my mom. I went to daycare after my mom picked me up. Preschool was fun because I never had home work or work. I went there ever week day. I turned 4 in preschool.

Chapter 4
When I was 4 I started kindergarden at (elementary school). I always used to hid my morning work in my desk. I did that so I could play games. We had hat day and I got my had taken away because I was playing with it. Once we got milk and I got milk. I got sick on milk. It snowed in December. We got to go out-side and play in the snow. My teacher said no throwing snow balls or we go in.

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Chapter 5
When I was 5 for Valentine's Day I got a huge hershy kiss. It was rapped in red tin foil. I wanted to eat the whole thing at first but it was to big. That was my favorite valintine's Day. I was eating the hershy kiss in my pajamas it got all over my clothers. I had to put the hershy kiss in the refridgerater.

Chapter 6
When I was 6 I started 1st grade at (elementary school). I would always hide my bad notes at school. My teacher found out and she told my mom about it and I got in trouble. I rode home with my friends. I stayed at my friends until around 5:30pm. When my mom came to pick me up from my friends she would always ask how I did.

Chapter 7
When I was 7 I went to (camp) for the first time. I also me my dad. When I met my dad I went to pindale. I met my dad in Feburay. I went to (church) on palm sunday. I was in second grade When I went to (church). In July is when I went to is when I went to (camp). It was a short timers camp. Wich means I only stayed for 3 days and 2 nights.

Chapter 8
When I was 8 I started 3rd grade. My teachers name was Mrs. T. I was also diagnosed with Adhd. I had Ab honor role. I passed all my eogs. I had one friend. Her names was Ellie. I also played with Susan...

Chapter 9
When I was 9 I was in 4th grade. My teacher was Mr. D. I always got in trouble. I had no friends I was always sleepy. My grades droped. I took medicine. It was called intuniv. I stopped talking it after I got sleepy.

Chapter 10
When I was 10 I was in 5th grade. I got Ab honor roll once. I gradurated from friedberg. I passed my EOG's. I had Mrs. D. I gradurated from dare. I have a cell phone. I am not Adhd. I had fun at (elementary school) for 2 years. I am going to miss (elementary school).

About the Author
My name is ... I just gradurated from (elementary school). I am going to (middle school). My favorite thing to do is ride horsed. I loved doing dare. I also like reading. I am going to miss (elementary school). I am glad school is almost over.

More on CAPD

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I am researching in preparation for the final report from Brenner's Children's Hospital regarding my oldest daughter's evaluation for Central Auditory Processing Disorder (CAPD). All I have to go on, for now, is that my oldest has trouble with auditory closure and inter-hemisphere exchange. At the beginning of my research, auditory closure meant nothing to me and inter-hemisphere exchange translated to a problem between the hemispheres of the brain communicating with each other.

Now, I understand quite a bit more about CAPD. First of all, it is a brain-related auditory disorder. It can be genetically related, it can be caused by a trauma, or a natural process of aging. There are some links between CAPD and the presence of multiple ear infections. My oldest had a lot of "silent" ear infections as a toddler. She showed no signs of infection, but eventually, she would start to defiantly misbehave, I would take her to the doctor and EVERY time, she would have an ear infection. (This could be an inkling into why she has CAPD, but we'll never really know.)

CAPD is different in every person. No two people are alike, so it is difficult to diagnosis. In a lot of children, it masks itself as AD/HD. For others, they just feel like they are stupid or slow. They don't get what is going on around them and essentially go through life with an empty smile and will put up with just about anything just to be accepted by others.

While I am scared of the diagnosis of CAPD, and while I was not expecting it, I am relieved. At least, I know that is going on with my daughter and she has a great psychiatrist who is willing to advocate for her and make sure that she gets the treatment/therapies that she needs.

Auditory Closure Auditory Closure is the ability to "fill in" missing pieces of a message. The average person will use, what my daughter's teachers refer to as, context clues to fill in words that they missed during a conversation. A child who is unable to do this easily will often misunderstand what they are hearing, especially when there is competing noise.

Inter-hemisphere Integration What I thought was called Inter-hemisphere Exchange is actually Inter-hemisphere Integration. It is the ability of the two hemispheres of the brain to cooperate and it decreases significantly with age. This deficit affects binaural hearing abilities (the ability to hear through both ears). As you hear through both ears, both hemispheres of the brain are being forced to work together.

Children with dysfunctions in the inter-hemispheric pathways have difficulty linking social communication and tone-of-voice cues with semantics and syntax.

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So, not only does my oldest have difficulty missing information, but is unable to make both ears listen . . . Wow.

CAPD affects not only hearing, but other areas as well. Spelling is one example. If a child can't process sounds properly, then of course they can't sound out and spell those words properly. Unfortunately, my child's Developmental Pediatrician mistook her spelling problem for "creative spelling" rather than a clue into CAPD.

Most people with CAPD have no problem with straight arithmetic calculation, but many do have great difficulty with verbal or written math word problems (which my child does).

Children with CAPD are often mistaken for AD/HD due to their distractibility. But, distractibility due to CAPD arises from the way that competing noise interferes with the ability to understand what is being said. Some children may tune out once they lose the thread of what is being said. Others may just give up after constantly having to fight to understand what is going on around them. They may just need a break.

For an individual with CAPD, social communication is frequently a chore rather then a pleasure. They often misunderstand what is being said, so their response/input into a conversation is off-topic or inappropriate. They are often mistaken for being slow, dim, or stupid.

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For the child with CAPD, social communication is even more difficult. Think about it. When is a school child expected to talk to their peers? On the playground or in the cafeteria. I don't know if you have been to either place lately, but they are quite possibly some of the noisiest places around. For someone with CAPD, this has to be a nightmare.

Children react differently to their social difficulties. Some tune out and withdraw. Others attempt to gain attention in other ways. They may become a class clown, or try to entice others to join in their off-task play. And still others may react by lashing out with anger. My child, has reacted in all of these ways. She often withdraws and convinces herself that she does not need friends. Repeatedly, in school, she makes noises in class and tries to get others to respond to her. In 2nd grade, she threatened to take an axe to some boys that were teasing her. This year, she turned her anger on herself/her situation and had suicidal ideations.

While all of this seems very scary, my daughter is very good at compensating for her CAPD. She is typically and A/B average child. This is due in part to her own hard work, guidance with homework by my hubby, and her teacher’s assistance as well.

The most difficult part is figuring out how to help her socially.

My IEP Experience

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I will have to say, Davidson County Schools is awesome! I requested psychoeducational testing 6 weeks before the end of school. The last day of school was our final IEP meeting. Testing was completed, everything was found to be average, and my oldest was determined to to qualify for EC (Exceptional Children's) services.

I know that we went through a shortened form of the process, but I am very pleased by the effort and work of everyone involved in providing my daughter with the testing requested by her Developmental Pediatrician.

Like Sound Through Water

I have been reading on CAPD (Central Auditory Processing Disorder). The first book that I read was called Like Sound Through Water. It is heart felt story about the journey of a mother to find out what was wrong with her son.

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At three years old, her son couldn't talk. She faced diagnosis of autism and mental retardation, but she knew in her heart that wasn't right. She fought and fought and fought. She persisted in finding an answer as to why her inteligent boy couldn't speak.

It honestly took her three years to start making progress for her son. He underwent therapies, teasing, and testing. His mother endured seeing him struggle and she tells it in such a way that I cried when the first real signs of progress appeared. I won't spoil the book for others, but I will encourage any parent to read this book. Whether you have a child with a disability or not, you should read this book. This is a wonderful book about a mother's instincts and her fight for what is right for her child.

Our Journey With What We Thought Was ADHD (Part 5)

You can read Post 4 here.

Following the psychiatry appointment, I got my oldest evaluated by a developmental pediatrician and it was quite possibly the best thing that I could have done. She told me that based on her testing MY DAUGHTER IS NOT ADHD. She is "thinking on a higher level" (more maturely) than her peers. Because of this, she is acutely aware of her differences from her peers and this causes increased anxiety and depression. She asked that I request psychoeducational testing at school, so that we can appreciate just how smart she is. (This testing was performed yesterday and we are awaiting the results.)

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In my hours of desperation, I also came across the initial questionnaires from Brenner’s Children’s Hospital and found a phone number. I called them and they gave me some pathetic excuse about not calling for an appointment because they didn’t have a phone number for me. But, I did get her set up for an evaluation for Central Auditory Processing Disorder, which was performed last week and I am awaiting the final report. (I was told that my oldest has a few areas of concern in her CAPD screening, so I am doing a lot of research.)

The diagnoses that I am working with now is:
Anxiety/Depression
Attentional Issues due to anxiety/depression
Dysgraphia/dyspraxia
and potentially, CAPD.

But after a three year battle, she is not ADHD.

Our Journey With What We Thought Was ADHD (Part 4)

Read Part 3 here.

After the suicidal ideation in January (you can read more about that day here), I became the over-protective, I will fight anything mom that I needed to be.

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I immediately called my oldest daughter’s old counselor with Youth Focus. We scheduled an appointment for that same day and she closely evaluated her. Karen, the counselor, told me that my daughter was not an immediate danger to herself, but that she definitely needed counseling once a week.

At my daughter’s second therapy appointment, (I was oversensitive and I know this, but...) Karen started to try to pressure me to get my daughter on stimulant medication for ADHD. This went against the previous decision of Karen, our pediatrician, and myself. Yet, Karen really tried to batter me into seeking this treatment. But, it all felt wrong.

I called my daughter’s pediatrician and we talked it over. We had a good 20 minute conversation on the telephone and she referred my daughter to a psychiatrist for evaluation. She told me that she would not put my daughter on stimulant medication unless a psychiatrist okayed it because of her previous reaction to the non-stimulants. She assured me that I am and have done the right things by my daughter.

I also requested a referral to a developmental pediatrician, and my pediatrician agreed.

By mid March, my oldest was seen by a psychiatrist, who diagnosed her with Depression and ADHD. Karen had made a failed attempt to guide the appointment towards ADHD medication, but you can read more about that here. My daughter was placed on Welbutrin and has done increasingly better since then.

Our Journey With What We Thought Was ADHD (Part3)

You can read Part 2 here.

Okay, where was I?    Oh yeah...

Over halfway through the 3rd grade, my oldest was screened for AD/HD. I spoke with our pediatrician, who is a wonderful woman and a real advocate for her patients. I expressed my hesitation with putting my daughter on stimulant medication and she agreed. There was research that indicated that Omega-3 Fish Oil was beneficial to children with AD/HD, so we opted to give it a try for a few months. I went out and searched for the brand names that I was provided by the doctor and started a daily regimen of fish oil.

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But, by the end of the school year, I had to admit that the fish oil wasn't helping and we tried my daughter on non-stimulant medications. We tried Strattera and I noticed severe mood swings right away. So, we tried Intuniv for the better part of 4th grade. My oldest, however, started having trouble sleeping at night and her grades dropped significantly from the year before. (If you ask my daughter about her 4th grade year, almost a year later, she will tell you that she slept through most of it.) There were just too many side effects so the counselor, the pediatrician, and I decided to take her off the AD/HD medication.

So ended our journey with AD/HD medications. Our pediatrician, however, was convinced that something else had to be going on and referred my daughter to Brenner's Children's Hospital for testing for Central Auditory Processing Disorder (CAPD). It was a real nightmare to get her in. We started in September and two months later, I was still trying to obtain the initial questionnaires that needed to be filled out by us and my daughter's teacher. When I did finally get the paperwork and fill it out, I sent it back, but we never got an appointment.

Then, the bottom fell out from under us. January 26th, I got a call from my husband (who is a teacher at our children's school). My oldest daughter's teacher was concerned. Another student reported that my daughter was asking classmates to bring a knife or a gun to school so she could kill herself.

Our Journey With What We Thought Was ADHD (Part 2)

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(You can read Part1 here.)

Okay, so lets talk a little more about this questionnaire that I had to fill out for my oldest daughter, the one that was used to initially diagnose her with ADHD.

The Attention Deficit Disorders Evaluation Scale (ADDES-3) is used by private psychologists, pediatricians, and other medical personnel to evaluate and diagnose Attention-Deficit/Hyperactivity Disorder based on input provided by primary observers of the student’s behavior (in our case, me and her teacher). As pointed out by the developmental pediatrician, the questionnaire used is subjective and doesn’t look into what is causing the behaviors.

What I translate this into is that, even though this form is widely used to diagnose ADHD, it can easily be misconstrued. It is a subjective test who takes into account the opinions of those around the child, not an independent medical/behavioral observation and interaction with the child.

The ADDES-3 was developed from research in behavior disorders, learning disabilities, and Attention-Deficit/Hyperactivity Disorder and literature in psychology, neurology, and education (when it was published in 1995). 1995 to 2012...that is 17 years ago and a lot has been discovered, researched, and improved upon in that time.

I am not saying that this form is not adequate to diagnose ADHD (which I am guessing you have assumed by now based on the tone of my post), I am just saying that none of this was provided or pointed out to me ahead of time.

This may be a form that has been tested and proved in typically diagnosing ADHD, but if I had known/realized just how subjective and realistically unreliable it is, I may have sought further testing to properly diagnose my daughter and not wasted the last 3 years assuming that she is ADHD.

Our youngest is now being tested, using this same form and I am having her referred to a developmental pediatrician for an actual, independent diagnosis.

You can read Post 3 here.

Our Journey With What We Thought Was ADHD (Part 1)

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My daughter is a wonderful little girl who talks way too much. (She always has.) But, she is compassionate, loves animals, and has a caring heart.


In Pre-K, she excelled. There was some concern of her fine motor skills, but half-way through the year, she was testing at an end of the year level. They blamed her seeming immaturity on the fact that she was one of the youngest kids in class.

In K, she seemed to do well. But, halfway through the year, I found out that she wasn't completing her classwork and was hiding it in her "chair pocket" (a pouch on the back of her chair). About the same time, I found out that she was making constant horse noises in class and had been all year. When I asked the teacher why she didn't tell me, she said that my daughter was just so endearing that she didn't want to get her in trouble.

In 1st grade, she went through a lying phase. She was getting into so much trouble making noises at school and not completing her work that she hid the notes the teacher sent home. It got to the point that the teacher kept a chart every hour of the school day that my daughter stayed on task and didn't make noises.

In 2nd grade, my daughter had an outburst of anger that caused all of us (me, her teacher, and even the principal) so much concern that they requested I send her to counseling. It turns out that some boys were picking on my daughter and she had enough and threatened to take an axe to them.

In 3rd grade, my daughter's noise-making again became a problem. It was such a problem that student's parents would call in and ask for their child to be moved away from my daughter because she was too distracting. With the help and prompting from my new husband and my daughter's teacher, I agreed to have her evaluated for ADHD. Her teacher and I filled out questionnaires, which were scored by the guidance counselor and evaluated as ADHD by her pediatrician.

(You can read Part 2, here.)