The Stranger: "I Mean, Is He Going To Be Normal?"

The other day I took the boys to the dentist. It was the last appointment of the day, so the dental hygienists and staff were rushing the kids through their appointments. There were only 2 seats available and they were on opposite sides of the children's dental clinic. I had to chose which child I would be with, because they weren't near each other.

I chose to go with my 4 year old first. He's great at the dentist, but he's still "my baby", so I figured I'd go with him while Jared got some x-rays. When I went to check on Jared, I was told he didn't cooperate. She said that she'd tell him to do something to his left side or his right side and he wouldn't do it. She said he refused to follow direction in the x-ray room. I immediately felt horrible for choosing to go with my baby, as obviously, Jared needed help. Because of his many neurological differences, he has to be shown what to do... not just told directions. Depending on the day, he might not understand.

I explained to her about Jared's APD and dyslexia. After a little while, I went back to Zane. The lady who was cleaning his teeth overheard my conversation about Jared. She said, "Now, what are his issues?" I thought that sounded a little rude, but I gave her grace as she looked to be 9 months pregnant and it was the very end of a (what could have been) a long day. I told her about Jared's differences, including his lacking working memory. She said, "Oh, so he's like Dory in Finding Nemo?" I told her it wasn't that bad, but some things don't stay in his memory very long. I stayed positive as I explained.

Then... and this is where I found myself praying for that baby in her belly... she put one hand on Zane's tummy {shaking it a little} and said, "What about this one? Is he normal?" As I looked at her, without answering, she continued (perhaps thinking she was clarifying), "I mean, is he going to be normal?" She continued to touch Zane's belly as she said these words. Perhaps she was showing concern for my baby, however, stopping what she was doing and putting a hand on his stomach... so he could clearly listen to what she was saying... was making certain that Zane was involved in this conversation.  I was taken aback and didn't quite know how to answer this. Thoughts were filling my head. But, the first thing out of my mouth was, "They are not biological brothers." And her quick, interrupting reply was, "Oh, thank God!" with another belly rub.

Wow. Did that happen? Are those words forever ingrained in Zane so that he can shout them out at Jared the next time he's mad at him? Did I not give a proper reply so that she  would not say appalling things like that to other children? I figured if I said more, or showed my shock more vividly, Zane might NEVER forget that moment. I don't want a single memory of that in Zane's head.  I'd like to forget it ever happened. I might type that I wish Jared could not have all his hardships and he could have more "normal" in his life, but I don't say that out loud. Sure, I wish I could fix/heal my son. I pray for a miracle. Those are my inmost feelings. Jared already knows he's different. I don't need anything else to come out of any of our mouths that makes him feel even more different. I want both of my children to always feel accepted and loved, no matter how "normal" they feel or how to world sees them.

Both of my boys are the most wonderful, precious boys a mother could dream of having. They are hilarious, cute, smart, and tenderhearted. They are not connected by blood, but their hearts are connected... forming a bond that only brothers know. They are unique and fill my heart to an overflowing level. 

So, to you, Ms. Dental Hygienist, I know that if you experience 1/2 the joy that I have been blessed with, your heart will be full. I pray the child within you has a place where he/she feels like he/she can "fit in" and be accepted. As mothers, we know our babies want to feel loved and accepted. Isn't that the desire of all of us?

Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen. Ephesians 4:29 (NIV)

Cat Therapy

For years, our veterinarian has told us that we need an outdoor cat to keep all the critters away. We live outside of town and we have our share of snakes, rodents, scorpions, spiders, etc. I'm not a fan of cats, however, so it wasn't top priority. I'll take a dog... or two or three... but dealing with a litter box is not my idea of fun.

A few months ago, as my husband and I were chasing a big mouse (him with hoe, me with rake) under the deck in our backyard, I started to consider the idea again. I mean, it's only a matter of time until we find all these varmints inside our house, right?

When we visited my in-laws (a.k.a. "cat lovers") a few weeks ago, it was confirmed: a cat was in our future. Jared loved all the cats we were around (12 total). At his grandpa's house, he found a stray outside and stayed out there with her for hours. I'd find him sitting next to the cat, talking to her. It seemed so therapeutic for him. It was time. It was also nice that one of the cat lovers, my mother-in-law, gave us a ton of cat things, like a carrier, litter box, etc. All we needed was a cat.

It's like the whole word disappeared and it was just him and the cat.

He didn't even see me with the camera.

...and then there were his aunt's kittens oustide.

Grandpa also had a cat inside that Jared loved.

This is where, I believe, God gave us a gift. Not only did we find a great cat, he's almost like a dog. He has to be one of the best cats I've ever seen. He will let kids... ANY kid... carry him around like a sack of potatoes. He is content being around people all the time. He comes when he's called. He hasn't used his claws or teeth on any of these kids carrying him around, upside down, floppily. He can't even be in the same room with someone without purring. The best part is, he makes everyone feel like they are the most loved person on earth. That's why he's a hit with the kids. Usually pets run and hide from crazy kids. This little guy runs to any person, young or old, purring to be picked up. 

As for therapy... Jared will spend hours just loving on and talking with Smudge. He has a new best friend.

Our  "Smudge" kitty

A friend loves at all times.... Proverbs 17:17a (NIV)

The School Program

The meeting with the principal and his teacher went better than anticipated. I knew they would be kind and supportive; that wasn't the issue. I was just confused as to which form of therapy we should use this year. Dr. C? The school? Dr. C. AND the school? I feel as if the sands in the hourglass are pouring into the bottom quicker than we want. This year is critical. I want to utilize his time as effectively as we can. 

Another thing that was causing uneasiness for me was the words "Scottish Rite" in the document for the school intervention program. To be honest, I am not impressed with the Scottish Rite Learning Center. I have heard horror stories about the programs they map out for kids with learning disabilities. I know some parents who have spent lots of time and money and it actually ended up hurting the child in the end because their therapy practices weren't really what the child needed.

As with everything, I'm sure there are tons of great things about them. Unfortunately, I haven't heard those stories. I have only met one of the directors in the local office and I was definitely not impressed. When I tend to know more information about a specific neurological disability than an "expert" in the field, I don't necessarily think that person would be best helping us.

Back to the school meeting -- After I mentioned my concern about Scottish Rite, the principal agreed with me and told me that she wouldn't recommend a child go there either. That was a nice peaceful nugget of information. Also, she explained the processing aspect of this 2-4 year school intervention program. It's nice to hear that it's not just about phonics. I was just honest with her. I haven't seen enough success to know if it's worth it. Sure, it seemed to work last year, but due to his lack of memory, he lost it within a week. When you buy a car, you want to research. And, yes... as I've mentioned before... annual therapy costs are definitely like buying a new car.

So, here's our plan - he will be in the intervention program at the school Monday, Tuesday and Wednesday afternoons, while the other students do centers and reading groups. I believe that the school staff members love my child and want to help him. I really hope to see more successes this year. I was told there would be. I was hesitant to believe them (remember, sometimes I'm a little "glass half empty"). I asked them to prove me wrong. They said they would. This made me smile.

And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:7 (NIV)

Seeking Wisdom

Tomorrow I have a meeting with the principal and teacher to map out the school year.  We were given the information for the Intervention Program. If he continues with it, this will be his second of three years. I don't know what isn't settling right in my insides, but I'm not as eager to start him in it as I was last year. I think it was something Dr. C. said to me this summer. She said that we have to get to the root of the matter... his working memory. Just teaching him phonics isn't going to help him. He can't retain the information. I have been told that if he isn't reading by the end of this year, he won't be able to go to 2nd grade. How does one learn to read if they don't have a properly working memory?

He qualifies for the Alphabetic Phonics Intervention Program. This is the phonics program he uses in his classroom, but this program is obviously more intense. You can choose to have him in the program as an individual or be part of a group. The groups have up to 4 children in them and it is less expensive.  Obviously, looking at the fees could be one of the factors of my insides not settling.  Well, that and the fact that Dr. C. might be able to work with him throughout the year. Do we need to do both? If Dr. C. can get over to his school to meet with him during the school day, do we really need the Intervention Program? He would be taken from class a lot, during the week. And, how in the world would we pay for both? We're talking "new car costs".  But, if we don't act now... in this critical time... in this limited time that he has to learn and retain reading skills... he might never be able to attend a school after this year.

These are the concerns on my mind tonight. I know that somehow we will provide for the financial, whether it be adding piano students and cake orders or making my 14 hour days into 16 hour days. And what about my little boy's heart and mind? Yesterday he came home, feeling like his brain was "fried", just from regular school work. When I called Dr. C. to even see if it was a possibility for her to come to our school, she didn't know if her busy student schedule could allow it. Would we do it after school? I have to do whatever I can possibly do to help my child. I must. I just don't quite know what that is. 

Blessed are those who find wisdom, those who gain understanding, for she is more profitable than silver and yields better returns than gold. Proverbs 3:13-14 (NIV)

ADHD or APD? The Results Are In!

He wouldn't stop talking. He kept interrupting the two students who were conducting (under Ms. Stiritz's supervision) his APD tests at Texas State University. I could hear it happening from the other room. Granted, he was saying "yes ma'am" to every question, but I was growing infuriated. I wanted answers. I wanted them to sternly tell him to be quiet and answer all the hearing questions. It wasn't happening. He wasn't on his best behavior.

"Have you ever had him tested for attention problems?" 

Instead of answering Ms. Stiritz with an honest "yes", I said, "I'd really like to know what you think."

He has been tested a few times, since he was three, for ADHD. As recent as last spring, his teacher asked me if he should be tested. I was always told he didn't have it. Since he didn't have autism or ADHD, there didn't seem an appropriate category in which the many testing experts could put him.  But, Ms. Stiritz is a true expert. She's been doing this for years. She's written papers on it. She's given lectures on the ADHD/APD phenomena. She knows ADHD. She knows APD. I wanted her opinion.

It came at the end of the APD testing. She, along with her two students, entered the small room where I was waiting. We sat at a table together and Jared found a book to "read". He sat there, quietly, not moving an inch... just reading. They went over their findings and we discussed what needed to happen next. We talked for a while (a long while). He sat, quietly reading, for a while (a long while). As one student observed, "he didn't even rock or move his feet."

Ms. Stiritz told me that at the beginning of the test, she thought he was classic ADHD. But, when we were sitting there, not only did she say he was definitely not ADHD, but that if we even attempted to put him on ADHD medicine, it would not work. It was nice to hear another expert tell me my son doesn't have ADHD. My favorite part was that she wrote it in her actual written report, that went to his Pediatrician, teacher, principal, etc. Here's what it said:

"Jared showed many behaviors during testing that are indicative of ADHD. There was constant movement and excessive talking and interrupting. However, he displayed no ADHD behaviors outside the testing booth while we were talking with you. This suggests that he does not have ADHD. He shows ADHD-like behaviors when tasks are difficult for him or when he has trouble understanding. It is important to realize that these behaviors are due to his language/learning problems, not ADHD." 

You will keep in perfect peace those whose minds are steadfast, because they trust in you. Isaiah 26:3 (NIV)

 

1st Day of School Thoughts

It's the first day of school, so I woke up extra early to pray. As you know, I'm constantly praying for a miracle for my child. I'm praying for that "sheath" {in his brain that I keep hearing about} to thicken and for his ears to communicate with certain sides of his brain. I'm praying that he finds confidence... something that I've witnessed his learning disabilities repeatedly break down. I'm praying for peace for him... for our family. I'm praying for his tender heart, not to "crack" as much. {I don't know where that term came from, but he's been saying things like, "That cracked my feelings" or "My feelings are cracked".}

So, I did something I've done a few times in life. I opened my Bible and played "Bible Bingo". This is the name my dear friend, Kizmi, calls it when one opens the Bible and it just falls to a page and you read it. Most of the times I play Bible Bingo, I fall directly onto a gem. This morning was no different. My eyes went directly to a verse talking about Jesus doing miracles among the people, and through God. I've read a great deal about miracles and do believe that God is responsible for them. The best part of the verse... the gem at the end, reads "as you yourself know".

It was so great to get a reminder this morning. I do know that, if it's His will, there will be a miracle. There will be many miracles in our lives. I believe it. I'm walking in that belief this very morning. 

Fellow Israelites, listen to this: Jesus of Nazareth was a man accredited by God to you by miracles, wonders and signs, which God did among you through him, as you yourselves know. Acts 2:22 NIV

Best Place to Get An APD Assessment in Central Texas

Way back in the beginning, when I first heard that my child might have APD, I researched to find the best available help for him. I kept coming across this name - Lori Stiritz.  She is one of few experts assessing APD in Texas. When I first tried to get in to see her, a year and a half ago, I was told that no one would test a 5 year old.  I also learned you needed a referral.

So, because of my Estes Audiology appointment, I got my referral. My appointment was scheduled for the beginning of July. I was excited. She works at Texas State University, my old Alma Mater.  I was so ready to get a REAL assessment... not some crazy, confusing paperwork, like the previous audiology appointment. 

Ms. Stiritz was great. She was funny and you could tell the students really liked working with her. She was wonderful with Jared. Unfortunately, Jared had fluid in his left, middle ear, so she wasn't able to perform the tests. We were only there for an hour and a half, but I felt immediate peace. She confirmed that if Jared had APD, we were doing exactly what we should for him. After an APD diagnosis, the only thing to do is therapy. Well, I believe the only thing is to PRAY and put him in therapy.

We had to reschedule for later in the month. She said it would actually be good, because she was going to an APD conference at the University of Connecticut in mid July, so she might come back with some new techniques or something.  It was called "Frank Musiek’s 6th Annual CAPD Boot Camp". Mr. Musiek is quite the expert. Just check out his credentials - http://speechlab.uconn.edu/faculty/musiek/publications.html.

I guess the reason I'm writing this brief "pre-assessment" meeting blog entry, is because I want to make sure that if local folks are reading they know where to go. If your child has APD, please try to get into Texas State University for a diagnosis. You need to see Lori Stiritz, M.A., CCC-A, Senior Lecturer and Audiologist. You won't be sorry. Just wait until I write about what happened at the assessment.

Give thanks to the Lord, for he is good; his love endures forever.  1 Chronicles 16:34

Finding the Right Brain Work

Have you ever gotten so behind on laundry that you see stacks and stacks of clean laundry, ready to be folded, and you just want to run and hide? That's how I've been feeling about writing lately. So much has happened this summer, regarding Jared. I wish I would have written all the events, meetings, feedback, etc. but it was never just "one thing". It was a big pile of overwhelming "laundry", that I ended up falling to my knees instead of typing here.

Jared has finished another summer with Dr. Champagne. The thing is, however, we need to continue working with her. I have no idea how to make that happen. Jared's brain is like mush at the end of the school day. I can't imagine him being okay with going on to another hour or hour and a half of therapy. But, if we don't get him in therapy with her, will he ever get better? After all the folks I've met on this journey, I'm thinking "no". 

Dr. C. is phenomenal. She knows Jared like no other and I do not believe there is a better advocate, other than myself, for my son. She knows what he needs. She knows what his complex, multifaceted brain needs. She knows that the help that he's getting through the program at the school is not enough. She's even working with us to see if there's anyway to get insurance to help with his therapy. That's huge.

I'm awaiting a callback for a scheduled meeting with Jared's principal and teacher regarding his learning. Dr. C. is willing to come to the school to meet with him. But, how will that work? He is already excused, three times a week, for his "intervention program". I am starting to believe (as Dr. C. already knows) this intervention program may actually not help him as much as many think it will. We MUST work on his working memory! He can learn all he can, in whatever new and exciting ways, but if we don't have his working memory in tact, is it really helping? 

In the past 19 months, we have confirmed that Jared's biggest problems are 2 things: working memory and part to whole. I will go into detail about those, along with many other things we discovered this summer, in future blog entries. Right now, I'm just trying to figure out the next step on our journey. How can I find the right "brain work" for my sweet boy?

Are not five sparrows sold for two pennies? Yet not one of them is forgotten by God. Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows. Luke 12:6-7 (NIV)

Orange!

This morning, he started out the ceremony as a yellow belt.

 

After his karate demonstration, he became an orange belt. 

{he was blowing me a kiss}

  

He is so proud of that orange belt! We are so proud of him!

I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus. Philipians 3:14 (NIV)

What About Me?

Summer seems to be busier than the school year, or so it seems... since I haven't updated the blog in a while. To be honest, it's been a pretty discouraging month.

You know how you're never supposed to compare your children? I always hated it when my parents compared me with my brother. My brother was book smart. I was street smart... and book smart, but I think it was mostly to keep my parents off my back. He thrived on learning science and math. I liked English and Bible class. The only ways that my brother and I are similar are by having the same DNA, by believing baseball is the most boring sport in the universe and by not preferring to eat ham. Oh, and that we both received "Bachelor of Science" degrees. He likes to remind me that my degree is NOT a real science degree, like his. He got his B.S. in Physics. I received my B.S. in Recreation Administration. There was always a comparison.

Since my boys are still young, I didn't expect it to happen so soon. How is my 4 year old better than his 7 year old brother when he plays Wii? He excelled the first time he played it. How come most folks can understand when my 4 year old says words, but constantly have to ask my 7 year old what he's saying? How can I tell what my 4 year old is drawing before I can tell what my 7 year old has drawn? 

The other day, my boys got a treat - little white powdered donuts. I gave Jared 5 on a white napkin and put 2 on Zane's napkin. Zane said, "I'd like the same as him." I said, "What do you mean?" He said, "I only have 2 but he has 5. I need 3 more." I tried not to gasp. I was in utter disbelief.  Did he just do math in his head? He didn't pick up each donut and count it and then add the others with his hand. He just looked at the napkin and quickly told me the situation. White donuts on a white napkin. The reason why that is of importance is because things like that make Jared's brain kick into overdrive because it seems harder to count when everything's the same color. Who taught Zane to add/subtract? Last I checked he counts to 7 and then adds random numbers. I wanted to jump up and down and praise my little boy, but I stopped myself because Jared feels any praise for any other person means a "put down" for him {we're working on this issue around the clock}. 

I couldn't wait for Ray to come home so that I could tell him about Zane. I said, "Is he brilliant? Where did he learn that?" Ray's response: "No. He's normal." {crush. shatter. sound of my heart breaking for Jared.} You see, we could work for 5 days straight with Jared, adding and subtracting donuts and he would probably end the week still guessing his answers. It takes so long for concepts to "stick" and then we have no clue if they will still be there next week.

People have said to find something that each child is good at, to promote individualism. So far, Zane is excelling in the things that Jared does well, along with the things that Jared cannot do. I'm having such difficulty trying to find ways to outwardly encourage my little one without crushing my older child. Jared's most common phrase seems to be "What about me?" He says it so much that it's Ray's most hated phrase on the planet. Wherever we are, if someone has something or does something, Jared will say, "What about me?" We've been trying to help his understanding, but I know it has to do with this deficit of self esteem that his invisible disability has eaten.

My discouragement stems from expectations that Jared should excel more rapidly than he is. Things just aren't clicking in that brain of his. They're not. Zane is on the sidelines listening to us teach Jared and his brain is a sponge, soaking it all in. I think that's so wonderful for my little one, but I'm just confused as to how to deal with all this in a sensitive way...as to not crush either of my precious boys' spirit.

Direct me in the path of your commands, for there I find delight.  Psalm 119:35 (NIV)

Daily Learning

This is how we are reading nowadays, through the Visualizing and Verbalizing for Language Comprehension and Thinking Program. I read a story to Jared and he picks out the colors to visualize what's happening in the story. For example, "The red hen laid a white egg" might start the story. He picks colored felt squares to go along with it.

This book that we're using is a book to develop thinking through dual coding. According to the author, Nanci Bell, the stories that we read "are a tool to integrate visualizing and verbalizing - the dual coding of imagery and language - necessary for cognition. Aristotle said, 'Man cannot think without mental imagery.' Since without thinking and reasoning we are lost, it is my hope that these V/V stories and HOTS questions will assist individuals of all ages, sizes, and colors to reason and communicate better."

And, this is how we're currently working on math skills. Granny bought Jared a little netbook so he can work through math problems on line. He's also working on his computer skills.

How much better to get wisdom than gold,to get insight rather than silver! Proverbs 16:16 (NIV)

A Little Champagne Talk

Dr. Champagne and I had an interesting conversation about this "brain injury" work. She told me that ADHD was considered a brain injury and folks would be institutionalized until the 1930's, if they had ADHD. She said that it was classified as that until 1970. It's an older way to classify any neurological disorder like that. She then told me stories of how her grandma took her to these institutions to study folks. I asked her how old she was and she told me 8 or 9 years old!

She told me about a lady who was admitted to a mental hospital when she was five, because she was dyslexic, and had been there for 50 years. Her grandma also took her to prisons to study folks. She learned that so many inmates who were in jail, had brain issues. I was absolutely fascinated. She said that her grandmother wanted her to see folks so she could better understand the brain and try to help folks NOT get institutionalized or make decisions that could land them in jail. Dr. C. has been studying the brain since grade school!

If I haven't said this enough, I'll say it again. I feel that Dr. Champagne is the #1 person who can help my child. Her heart is phenomenal. She goes over and beyond and she KNOWS HER STUFF! She almost makes me want to go to medical school and study neurology. Almost.

 In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. Ephesians 6:16 (NIV)

Concrete

A few weeks ago, Ray and I met with Jared's teacher and principal to recap his phonics program and see how we could help prepare him for the next school year. Out of all the things we talked about, one thing stood out: "Read books with him and to him, especially fiction books." Hmm... that seemed to be an odd suggestion.

When we asked why, we were told that he takes everything very literally. Some of the day-to-day things he says are, "That can't happen" or "How is that possible?" He is extremely inquisitive and wants to know how everything works or functions. At times, he'll even argue with the person telling a fiction story...expressing that the story could not actually happen!

Last Thursday, Dr. Champagne read a story to him and he was to answer questions after it. Unfortunately the story was something like, "You and your family went to the park yesterday. You went down the slides and played in the grass." When he was asked the questions, he kept arguing with Dr. C. and telling her that he did NOT go to the park yesterday. "Did you slide down the slide?" He'd say, "No. I wasn't at the park!" She explained to him that it's a story. He wouldn't budge.

My favorite one was where she asked him the question, "How many pennies are in a nickel?" He said, "None. You can't put pennies into a nickel." She kept trying to explain it, but he took the penny and kept knocking it up against the nickel and asking her to show him how it was even possible. He told her it could not be done. They could be stacked, but you could not put a penny IN a nickel. It's impossible. She was laughing so hard. She said, "He's SO concrete!" 

A time to weep, and a time to laugh; a time to mourn, and a time to dance;  Ecclesiastes 3:4 (ESV)

Is It In There?

Today I received a phone call from the administrator at Jared's school. She had good news. This fall they are starting an entirely new phonics program at the school. Why is this good news? It's geared toward APD kids. It's one of the best ways for ALL CHILDREN to learn to read. Even Zane will be starting with it in K4. She asked if I wanted to come to the teacher training for it in August. Preschool through 2nd grade teachers will be trained in it. Her excitement was evident in all that she told me. She said, "Jared's going to be ahead in some areas, since he's already familiar with it."

That's when I took the opportunity to tell her about my day yesterday... how Jared's skills vanished. Her first words were, "It's in there." My first thought was cynical... "Sure". She said that he's filed it away somewhere and we need to find the tools to retrieve it. Once we find those tools, it'll all be there. She described it like it was going to be a magical moment or something. I didn't realize how teeny tiny my faith was until she said that. My thoughts were still "Um. yeah. sure. I don't think so. You don't understand. It's gone." I mean, could she be right? She IS trained in APD. She knows about all this stuff. Has she seen this before? Why is she not as pessimistic as I am? Are there a bunch of drawers in the brain and it's been shoved in a drawer and we have to remember which drawer it's in and get it? What do we do until then? Learn it all again? This is so confusing.

I told her we need a miracle. She said that she would pray with me for that miracle.

Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him. James 1:12

More Answers, More Tears

I brought home this perfect little bundle of joy from the hospital 88 months ago. He had ten perfect toes and ten perfect fingers. He had ice blue eyes and natural highlights in his hair that caused quite a commotion at the hospital. He had a smile that lit up any heart.

He is my "#1". I've always called him that. His daddy deployed when he was 4 months old and we were on our own for 18 months. He was it. He was my everything. He is my joy. He is my heart. He makes me smile like no one else can.

I adore his sense of humor. His laugh melts any mood. 

From the outside, everything seems perfectly normal. 

But sometimes I wonder how many swimming pools could be filled with the number of tears I have cried for him. Some days the new, or better explained, diagnosis seems too much to handle.  You would think my tear ducts would dry up. Why can't they? Sometimes I think, "No, this isn't happening. There's going to be a miracle and his brain will start working. It HAS to." Then I look at the piles of workbooks on my desk... cognitive strategies that I have to work with him daily...and know that this is our reality. "Techniques for Brain Injury Rehabilitation" is our reality. Did this "brain injury" come with the perfect fingers and toes at birth? When did this happen? When did my perfect son's seemingly perfect brain stop functioning? 

Pouring out my tears and heart to the only One who knows what's going on, each night after my precious son falls asleep, is my reality. The terrifying and sorrowful diagnosis that I received this morning is my reality. His working memory is low. His auditory memory numbers are low. Everything we've worked on. Everything he learned. His reading. His math. It's gone. It's like someone came and wiped out his brain. We took a break for a week and it's vanished. It took my strength and hope with it, and left me with pain and so many, many, many more tears for my child.  It's just like what happened when Ray came back from Iraq when Jared was 4. Jared suddenly "forgot" his alphabet. We thought he had a mini-stroke or it was the stress of Ray coming back after a year. Today I found out the answer. He needs a functioning memory to remember things.

Having the answers doesn't always make things better. In fact, this answer has me on my knees, tonight, praying for a miracle.

How long must I wrestle with my thoughts and every day have sorrow in my heart? Psalm 13:2a

RIDICULOUS

What a day! What a ridiculous day! I sure wish this "invisible" disability would quit being invisible.

We (and the school and Jared's pediatrician) received our formal report from the Audiologist. As I was reading this document, my jaw dropped. What happened to the, "Oh, he definitely has APD"? That's right. Perhaps since it's not in the Medical Journal, they can't formally write it? So, what is said? This is where it gets ridiculous.

The first part of the document talks about how great his hearing is. These were some of the items that were in BOLD in this document. 

• "Distortion product otoacoustic emissions testing revealed robust and present responses for all frequencies tested, 1.5-12 K Hz, bilaterally, which is consistent with near normal hearing. His hearing thresholds were 'normal thresholds bilaterally.'"
• "Filtered word subtest standard score was 8 which is in the 25th percentile rank for his age and considered normal."
• "Auditory figure-ground subtest standard score was 10 which is in the 50th percentile rank for his age and considered normal." 

Then we get into the last 2 tests - binaural integration and binaural separation. A low score on these "may indicate delayed auditory maturation or damage to central auditory pathways". (this part wasn't in bold in the report) And, guess what else wasn't in bold?  "Jared was able to repeat 15 out of 60 stimuli on the test of binaural integration test and 5 out of 20 on the test of binaraul separation." Did I mention that the doctor told me he only got TWO correct when we were there? I was actually in the room and only saw him get TWO correct. The next sentence is in bold, in the report: "The Competing Words score is considered borderline and the Competing Sentences score is also considered borderline for his age group." WHAT?! 15 out of 60 and 5 of 20 is borderline? And the kicker: ALL tests are added up for his diagnosis. So, in other words, since he can actually hear perfectly and aced those first tests, they counteracted his lower scores and his "standard score for all subtests was a 79. This score is considered borderline for his age category." "Borderline" was in bold." I was confused by all this, but not really upset.

Then there are about 9 more paragraphs... none in bold. In them, the doctor says that the parents might wish for an FM system to be in the classroom. Remember how she told me that we should have them in both home and school? Also, it states that if his parents wish to have further testing done, they should contact a pediatric neurologist. All that verbiage is near the end of the very long document... none of it in bold. And, when you're reading a long document, it's easy to only read the bold. Right?

What happened? How did things change so much from what she told me? Ridiculous.

This morning, I asked a dear friend of mine (and Hospitalist) who the top Pediatric Neurologist was in my city. She knew it right off the bat. She told me not to go to any other in the city. So, I called his office. The receptionist told me I couldn't get in without a referral from Jared's pediatrician. I thought, "Cool. She got a copy of this Audiology report." I called over there and the assistant said to me, "This report says everything is normal." I explained to her that she needed to get past all the words in bold and read to the very end of the report. Her words? "Oh, yes, this is very confusing. Why does she use the word 'normal' and then mention that he must have environmental modifications, both at home and school, to improve his ability to process auditory information?" I asked her to also check some other parts. She told me she'd get the referral right over there. She did.

I called the Neurolgist after that. I was told that it would be in September before they had an opening BUT they would review all the paperwork and DECIDE if they will even be willing to see us. I was told we'd get a call in 48 hours.

I was willing to give the Audiologist the benefit of the doubt before I found out that the cushy report she wrote will be the deciding factor between whether we can see a Neurologist. I took notes at the Audiology meeting, but now I've learned that I want to audio record every word a doctor says to me. This is frustrating. Ridiculous.

I texted my friend the update. She told me that she would ask the Neurologist to put it in a priority pile. Who knows how this will go, but how blessed I am to have a friend at one of the best pediatric medical centers in the US?! But, what about everyone else? Is this what all other parents out there have to go through to get help for their children who have APD, a disorder that has "no standard medical criteria to define it"? Ridiculous!

We will continue our weekly cognitive therapy and go to the listening clinic at Texas State. We know his right and left brain aren't communicating. Dr. Champagne told us 16 months ago and his current therapist AND the Audiologist also said it. Hopefully we can find a connecting point with his current treatment... and possibly/hopefully a Neurologist... and definitely PRAYER.

But I trust in your unfailing love; my heart rejoices in your salvation. Psalm 13:5 (NIV)

Friday Morning with the Audiologist

Jared went in for his formal audiology appointment on Friday. We had to wait until he turned 7 to be seen by an actual ear doctor. (I still have very strong opinions on how horrible I think it is that there's an "age limit" for things like APD or dyslexia, but that's for another post.) I hadn't mentioned it to many folks because I didn't quite know how I felt and wanted to make sure it would really happen. Prior to going, a few people said things like, "What if the doctor says he DOESN'T have APD? Have you thought of that? What if it actually is just ADHD?" or told me stories about how Audiologists really don't "believe" in it, since it's not in the Medical Journal. Another person said, "Wouldn't that be horrible if you found out he actually didn't have APD after all the work you've done for him?"

In my mind, I never thought twice about APD. I've been researching since late 2010 and everything links up with Jared's symptoms. He's been in therapy and we're seeing strides. My biggest fear was that he wouldn't be able to get the formal screening. A lady I know tried to get her son tested a few weeks ago and the doctor found fluid in his ear and wasn't able to test him. Jared was extra sniffly this week, with allergies, so I wasn't sure if it had developed into another ear infection.

The doctor who screened Jared was very nice. It was a long appointment and she talked with us about all our concerns. The first test was for his actual hearing. Of course, he has excellent hearing (how many tests have we had in the past year and a half?) and passed it perfectly. The second test was for hearing/behavioral things, i.e. raise your hand or do what the little voice told you when it was quiet or loud. He did wonderfully on that one too. The third and fourth tests reflected the connection between the hearing and the brain. Guess what? Not good. Two words were quickly spoken into his headphones - one in each ear. He was supposed to repeat both words. He didn't do it a single time. He only said one of them. It was also difficult for him to hear certain words in one ear when there was background noise in the other. The doctor said that, for some reason, his left and right sides of his brain aren't communicating. Sound familiar? She's going to finish up his formal report and send it to Jared's pediatrician, Dr. Champagne, his school, and us.

One thing that she said that really stood out to me and I hope that everyone reading this remembers this ONE THING: For every one month a child, in his developmental years, has an untreated ear infection - it equals a THREE month delay in speech/auditory issues. Jared had so many untreated ear infections because he wouldn't let me know they hurt until they were already double, bloody ear infections. So, in other words, because my kid has a high pain tolerance or stoicism, he was delayed. That makes me so sad. That makes me feel like a crummy mother. I had no idea. Suddenly, many of the results from the formal testing that Dr. Champagne did made sense. She linked it to maturity and growth. It was nice for the Audiologist to link it to the ears. The cycle. The sad cycle.

The Audiologist also recommended an FM System for the classroom and said "it wouldn't hurt to have one in your home, too." When I asked her how much it costs, she said they are $3,000 - $6,000. I haven't yet determined how many cake orders that is, but I'll probably do that after we talk to our insurance provider to make sure that at least part of our summer hearing clinic/audiology/neurology appointments will be covered. If you know of any "D List" celebrities looking to drop $12K on a wedding cake, hook me up. No, seriously, the school doesn't have an FM System, so I'm praying for a generous donor to go that route first.

Our next step? Texas State University for more thorough diagnostic tests. "The premier hearing clinic" is the place where I graduated 16 years ago. We were referred to a specialist up there at the Speech-Language-Hearing Clinic. When I called to make the next appointment, I was told that they won't start scheduling the summer appointments until June 11th, but that he's the 11th on the list, so his 2 hour appointment will definitely be this summer.  

I'm feeling so weird about all this. I had called and talked to folks at the Audiology office AND Texas State when Jared was 5. I was told I couldn't do anything until he turned 7. Here we are. It almost feels like we are at the bottom of another big hill. The Audiologist told me to keep doing what we're doing... getting him cognitive therapy. After Texas State, we will probably be working with a pediatric Nuerologist. I'm sure I'll be calling the same Neurologist I called when he was 5, and not old enough. After that, who knows? We will continue on this APD journey and pray for more answers and assistance.

Break up your unplowed ground; for it is time to seek the Lord. Hosea 10:12b (NIV)

A Job Too Many

Working three jobs is kicking my butt! Every single moment of my day is filled to the brim with constant information. If it's not my three paying jobs, than it's my volunteer positions or my biggest job of all - wife and mother. 

It's been a tough week. Even with turning down 11 cake orders this week, I'm still overbooked. My church job has required extra time this week, and I feel like my personality has left my body. I'm a zombie. I don't like this. It's got to stop.

15 years ago... even 5 years ago... I couldn't imagine being in a place where I'm working multiple jobs and juggling so much in my life. I envisioned exploring with my children or spending each day seeking a new adventure with them. Instead, my mind and body are so clogged with rushing here or there to do this or that to prepare for this summer where my kids will be home all day and the APD therapy bills will start stacking up. 

I could go on and on and on, but I'm too exhausted to write anymore.

Look to the Lord and his strength; seek his face always. 1 Chronicles 16:11 (NIV)

My Little Man

Last weekend my boys and I went to Round Rock to celebrate a birthday of a friend. We had a blast. There was face painting... or, with my boys... arm painting.  

Even though we couldn't stay too long, as my work schedule was a little crazy that day, I would say that it's one of the best experiences I've had as a mother, thus far.

At first, I was kind of dreading it. Jared gets wild and crazy when there are a lot of kids running around in a huge park. He must always be exploring and hanging out with kids. He usually gets so "into" all the fun that he "forgets" to obey. It's draining.

When we first arrived, both boys played on the playground. Jared then went down to the creek and tried to catch tadpoles for a while. A little later, Jared came under the pavilion and sat by me. He didn't say a word. He just sat. My talkative, busy little guy just hung out with me. In public. With tons of kids running around. He thrives on being around other little kids. That was a first. 

The next thing I knew, he was across the pavilion talking to my friend, Roslyn. I was talking with another friend and would occasionally glance over there. He was deep in conversation with her. Five minutes passed. Ten minutes. Fifteen minutes. Could my little boy be holding a conversation for that entire time with an adult while all the little kids were running around him? I was in awe. I could barely hold my conversation. In that instant, I wish the few teachers and family members who thought he had ADHD could see him. He was not sick or tired. He was acting just like he does at home... calm and focused. I loved it.

On the way home I asked him what they talked about. He said, "I asked her how old she was." {hee hee}

The Lord has done great things for us, and we are filled with joy. Psalm 123:6 (NIV)

The Bird and the Cricket

Last night was the school musical for my boys. Zane was a bird.

Jared was a cricket. 

It was really cute. I sure am proud of them!

God made the wild animals according to their kinds, the livestock according to their kinds, and all the creatures that move along the ground according to their kinds. And God saw that it was good. Genesis 1:25 (NIV)

Dial 991!

I had mentioned in a previous post or two that I have an unusual health condition where I have syncopal attacks. They are not fun. I'm bending over in excruciating pain one minute and then I'm on the floor passed out. The doctors have absolutely no idea why this has happened to me for the past 18 years. When I research on the Internet, there are tons of folks with the same symptoms and they have all seen multiple doctors and there seems to be no treatment. God has been faithful and so far I have only had embarrassment, bumps, bruises, scrapes, and two hospital visits due to the fainting spells. 

Last night I could feel an episode coming. It happened to be when I was putting the boys down for bed. Ray was out of town, my boys were asking me to read a book and I was on the floor, in a fetal position, in extreme pain, shaking and drenched in sweat. I felt that it was going to be a "more serious" attack (I've learned to rate them over the years), so I asked Jared to grab the phone. I thought it might be a good time to ask him what he would do if he couldn't wake me up. He told me he'd call the police. I asked him how he would do that. What would he dial? He said, "Oh, I know. 991." Um... before I could answer I wondered what happened if you actually made that mistake. Would you just get a "this number is not available" recording? Surely there are other dyslexic folks out there who might dial it incorrectly, right? Okay. Maybe not. 

We went over it a couple times. Me: 911. Him: 9911. Me: 911. Him: 991. 

When there are 2 of the same numbers or letters in a word, he tends to get jumbled. He can spell bigger words, but don't ask him to spell "Bob". It'll start with an "O".

This conversation actually helped me calm my body down and not black out. Or, maybe it wasn't as big of an attack as I anticipated. Nevertheless, it made me wonder how I could get him to memorize that number. Have I mentioned that he doesn't have our phone number memorized? I've tried that one for years.

Me: Nine Eleven. Him: Nine Eleven. Me: Nine Eleven. Him: Nine Eleven.

Just when I think he's got it, he goes to the phone and says, "There's no eleven on here!"

But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:31 (NIV)

2 1/2 Weeks Later

About 3 weeks ago, I was offered a job. I wasn't expecting it. It was so far off my radar that I was actually stunned when I heard the words. Here I am, working my butt off with cake/cookie orders to help pay for Jared's cognitive therapy, and a wonderful job falls into my lap. This job is far less hours than caking and the best part is, I was created to do it. It's my passion. I will continue my CakesAzucar business, but I am able to cut back on many, many orders because I'm now being paid as the Worship Leader for our church.

Our family is so excited about this opportunity! It's been a fun 3 weeks, figuring out the vision/future of the ministry and meeting with the pastor and worship team members. I now house a few instruments, music stands, amps, sound equipment, etc. and my spare time is spent scheduling and listening to potential songs in which to lead the congregation.  It's been great!

So, I'm finally catching up on blogging and reading some of the APD bloggers I follow. Well, guess what? April 4th is considered "APD Awareness Day". Three years ago the Minnesota governor declared a statewide APD Awareness Day. Even though it's unofficial, APD advocates have honored that date as International APD Awareness Day to "Break the Silence on this Silent Disorder". 

I missed it.

Next year, I hope I don't. I'd love to celebrate it with some cookie gifts, of course. I found the greatest picture for the cookies, too. Apdgirl created this rad photo:

“I have Auditory Processing Disorder. This is a picture of an ear with a question mark inside it. The colors on the right side represent sound in reality and the colors on the left side represent the sound through my ears. My ears and brain don’t connect right, so the things I hear sound broken and often don’t make sense. I can put bits and pieces together, but it’s hard to put it all together to make sense of everything that I hear.”

How cool is that??

Even though it's been a great 3 weeks, I'm kind of sad I missed the early April posts on APD. I love that folks are united in helping others become aware of this disorder!

Therefore I will praise you, LORD, among the nations; I will sing the praises of your name. Psalm 18:49 (NIV)