Jack's Journey

Jack has an auditory processing disorder. This blog is about his journey - and mine - as we navigate this unknown world in search of understanding, communication, and the ability to learn. In search of what some would call normalcy.

Bittersweet Moments

It has been a while since I have come here to share our journey with you. The main reason for my absence is we are moving to Arizona.

While Jack has continued on his path, I have concentrated on the move. It has taken all of my energy and time to prepare our home for sale, look for a new home, preparing at work, and organizing everything I need to move a family to another state. Instead of being panicked about Jack every day, I have had plenty of other things to panic about. It has turned out to be very therapeutic for me. I needed a break.

Despite the excitement of a new adventure, I am very sad and hesitant to leave Colorado and our entire support system here. I have found experts in their field who have significantly helped Jack. I not only come to trust the work they do with Jack, but also I have come to care for each of them as friends. They do amazing things. They inspire me. They give me strength to keep going.

Jack's articulation has dramatically improved over the last couple of months thanks to Jeff of Foothills Speech and Language. Dave and I can tell the difference. Family and friends keep saying with the same excitement as hearing a young child speak their very first words, I understood everything he said to me.

Since we all were taking note of the change, I decided to ask Jack if he noticed a difference. I was certain he experienced a similar type of revelation. I was right, he did notice. But instead of excitement and shear joy as the rest of us felt, his head dropped and he sighed, Yes, people finally understand me.

For a brief moment as he stood in silence at the end of his sentence, I had a glimpse into Jack's world. I saw how deeply not being able to communicate has affected him. It was then I realized that I could never fully understand what it is like to struggle with all facets of language. I knew that these struggles were going to have a profound impact on him for years to come... if not forever. 

It is bittersweet moments like these that make my support grow stronger and my compassion run deeper. They seem to sprinkle this journey with a purpose. As if they are a nudge from God to prepare me for tomorrow and to help me find the strength to keep going. It is a way for God to remind me that it is not about me, but about my son and helping him gain all the valuable skills he needs to make his way in this world.

I had another moment a couple of days ago as I sat in on one of Jack's reading therapy sessions. Dr. Riddle had spoken to Jack's old therapist, Shira, about trying to help him again. Perhaps with the new information from Dr Riddle's report we would end up with a different result.

One of the major changes I saw in the first couple of sessions was that Shira now clearly understands Jack's abilities are far weaker than they appear. This alone changed the whole tone of their interaction. Jack's bright so it's easy to believe a child that can instantaneously figure out a whole series of Rhombus shapes as his Grandmother read the description to him off Wikipedia can easily learn the alphabet and all its sounds. It's easy to assume he's not trying. It's hard to accept that he can't physically do something so easy.

I also stopped sitting in the sessions, so when I did after a few weeks I was taken back by his progress. It was clear he was trying his hardest. He read through his alphabet cards saying A, Apple, ah. P, Puppy, Pa. K, Kite, ka, etc. He got all of them correct on the first try, but three. One he didn't remember the name of the letter, one he couldn't remember the sound, and another the name, word, and sound were all difficult.

When we left Shira earlier in the year, Jack couldn't even do four cards without prompting - even after three months of work. Some type of miracle happened - a miracle full of patience, understanding, skill, and wisdom. As I sat completely in awe of his progress, I also sat in complete awe of his lack of progress. Months to learn the alphabet and it's primary sound. I began to realize just how long this process was going to take.

It was yet another bittersweet moment.

God reminded me how important patience will be...

A Purpose in Life

When I started writing about Jack's journey with an auditory processing disorder, I had grandiose ideas that I would write about things that would help people in similar situations. I would take the time to share all that I learn and help people facing the same struggle make some of the difficult decisions this journey throws your way - and there are plenty of them.

Instead, I found myself struggling to hold on. After every defining moment... just when I thought I hit the bottom of the iceberg... more comes. Sometimes I began to think I couldn't handle any more. Only to be proven wrong the next day when the next moment happened.

I realize now I was driven to solve the puzzle. Nothing that anyone said to me - no diagnosis, no explanation of Jack's abilities - made sense as I looked at my son as a whole. All of the books I read on the subject of kids and language egged me along. Some times I wonder what would have happened, or how long would it have taken, if I had just accepted what the first or the second... or the third... and so on had told me. What if I didn't have a burning desire for all the dots to be connected, all the lines to be straight, and all the spaces to be filled?

So I solved the puzzle. I told a friend of mine in an email just after I received the diagnosis, I know this isn't the end. It is the beginning of a long journey. It is the beginning of Jack's future.

I was sad. I was in tears. Everyone was trying to keep me positive. I knew I was positive. I just knew I needed to be sad, if only for a moment.

Now after a few weeks of solace. The world is a different place. I see Jack is a new light. Having the knowledge that pretty much every language avenue for him is alike an old road with missing concrete gives me insight into his world. I am able to draw him out, to give him reprieve, to open the door for him to ask questions and experiment like I have never been able to before.

And he is trusting me more and more.

For instance the other day, he wanted to tell me something. He was unable to find the words. Instead of seeing a boy trapped inside his head unable to find the word to share all of his thoughts, I knew the words were just flying inside of his head and he was unable to string them together. So I asked him to just say the words as they came to him. He did. Then together, we pieced them together so I could understand... so he could finally share.

Just that alone is a miracle in my book.

The Puzzle was Solved

It's been quite a roller coaster ride for me over the last few weeks. So much so that I could find the strength to write about what has been going on. It has been quite a journey... especially for me, emotionally.

Leading up to the testing schedule with Dr. Riddle, it was hard to think about anything else. What would she find? Who she find anything? Is this really all just an auditory processing issue? Why does everyone that works with him tell me he has something different? APD, language delays, ADD? Who is right and who is wrong?

Then came 'The Week', Jack spent over six hours total with Dr. Riddle going through a variety of diagnostic tests. It was okay, because he likes being tested. It seems as though he finds it challenging and rewarding. He always tells me, as we drive home in the car, what was easy for him and what is hard. It's an interesting perspective for such a young child - he seems quite capable of removing himself from the equation and looks at the tests quite objectively. It's impressive.

As we walk out of her office after the last day of testing, she stopped us to say good-bye to Jack. I could tell she enjoyed working with him too just by the way she was looking at him. He definitely made an impression. As I was watching this, I wanted to scream, What did you see?! What did you find?! I knew she already knew. I wanted to know. I didn't want to wait five days to find out, but I had no choice. We said our good-byes, then Jack and I left.

If I thought I obsessed over the testing before, you can imagine how the following days were while I waited for our consultation. It was all I thought about until I walked into her office five days later... I sat down and she began to explain the test results.

My greatest fear of double jeopardy came true. Jack has Dyslexia. In fact, Jack has severe Dyslexia.

I was a bit dumbfounded because no one, not one single professional, mentioned Dyslexia to me. They all came up with something... but not Dyslexia. I was the only one who even entertained the idea. To be fair, all of their diagnosis where a direct effect of Jack's final diagnosis... but not the, as Dr. Riddle called it, high-level diagnosis.

It was at this moment I knew that we had done the right thing. The comprehensive evaluation looked at Jack has a whole child. If we had gone through individual tests, looking at one things at a time, we would have received many different diagnosis. During our talk, she explained that all the brain systems are interconnected so sometimes it is hard to look at them individually. She was right.

Dr. Riddle explained to me that an Auditory Processing Disorder is a lower-level diagnosis to Dyslexia. While she didn't use this term in my meeting, a child advocate I talked to at one point mentioned that early in her career she worked with a child that ended up having Severe Phonological Dyslexia. While it is probably not a technically correct diagnosis (Dyslexia is a disorder having to do with the phonological functions in your brain anyway), it's a good way to think about it..

Dr. Riddle recommended another book for me to read before she did the testing. In fact, our meeting before the testing was enlightening for me personally. While discussing Jack's family history, she assessed that I have Dyslexia too. It all makes total sense. My feelings expressed months ago are valid. Amazing.

I read the book from cover to cover the moment it arrived from Amazon. (Just think if I had a Kindle I could have read the book immediately!) The book is Overcoming Dyslexia. The author run the Dyslexia center at Yale University - the best in the country I hear. It was refreshing read what Dyslexia actually is - in contrast to what I used to believe it was. It made sense for Jack... and for me. Knowledge is a beautiful thing.

Jack's Dyslexia with the Auditory Processing Disorder effects all of his language capabilities. I once described Jack as a boy that was stuck inside of his own head... I was right.

As the weeks have gone by my emotions have evolved. I started out feeling joy. The kind of joy that comes from finally figuring something a difficult puzzle. That joy quickly turned into panic. I felt as if I need to fix everything right away. If I didn't start tomorrow, it would work out in the end. While I did take some actions right away, I have finally come to realize that this journey has just begun. It will be a long, difficult journey - but one well worth taking.

The best way to eat an elephant is one bite at a time.

A Phone Call

I finally connected with the Head of Audiology at Childrens Hospital. We spoke about Jack and I told her his story – mainly speaking about the plane ride. I was completely taken back by her reaction.

I have read books about mothers who have encounter medical professionals who say troubling things including assuming either the mother is crazy or possibly the child. Who dismiss evidence or just don’t care to look deeper. Who question the child’s reality. Who dismiss the mother’s observations. Who misdiagnose because not taking the time to look at the whole child.

She didn’t even pause to think about what I said. She raised her voice as if she was leaning back in her chair in disbelief and said, Wow, that’s extreme! I’ve never heard of anything like that before. You should consider taking him to a psychiatrist if he is having anxiety attacks like that. Something is wrong if he is reacting that way.

She began to ask me pointed questions that were clearly meant to evaluate his mental health. I felt as if I was getting back up against the wall. As I began to feel defeated, I became more defiant. I ultimately said, Why don’t I worry about his mental health, and why don’t you just try to find out what is triggering his extreme reactions to certain sounds.

I felt better. I stood my ground and fought for my child. I know what I need from her and I quickly realized I didn’t need her to accept or understand or even care. I only needed her approval to proceed.

After she calmed down… okay, we both calmed down and got to the business at hand. Oh, who am I kidding, we never reached the level of a productive conversation. I was never going to receive respect from her… I am obviously just another crazy mother.

I was able, however, to confirm a thought I had. We both agreed that his severe reactions to some sounds are not associated with his Auditory Processing Disorder. The sensitivity to background noise associated with APD is different.

My understanding is the sensitivity with APD is when background noise – like an air conditioner or the buzz in a room full of quiet children (yes, quiet children make noise!) – is distracting and makes it difficult for someone with APD to isolate the sound of someone speaking to them. APD doesn’t make someone get horrible headaches as if the sound is filing them up uncontrollably, lie on the floor holding their head, have severe anxiety attacks, throw up, pass out, and ultimately protest going to any place new.

In the end, she agreed to have Jack tested. She briefly explained they have equipment that allows them to see the different part of the ears reaction to different type and levels of sound. She also said they’d fit him for custom in-ear ear plugs.

Success.

Now, as with much of this journey, I wait. I’ll wonder every day about what they will find. Hoping and praying to God they find something.

 Luckily this time, I only have to wait a week.

The Longest Hour

Dave stayed in Arizona to work after a long weekend vacation at my brothers. We had driven down on Saturday so the boys and I flew back to Denver on Tuesday night.

We were having fun. Checking in, putting our bags into the security machine, getting a bite to eat... the boys followed me like little ducklings. They were fascinated by the whole process. Why this? Why that? I love answering all of their questions.

We had flown before. A few times. The last time was years ago to Hawaii and back. The boys are always troopers. They made traveling easy.

Before we left for Arizona - as we were just about to pull out of the driveway - I thought about running in and grabbing Jack sound-blocking headphones. Just in case. But I didn't. We'd make due. We'd just turn off the radio, or the TV, or leave the restaurant if it bothered him too much. Besides I had Blue-y, Jack's ear filter. 

We got on the plane. The boys were so excited... hesitant, but thrilled. Our seats were all the way in the back. They didn't care. We settled in. I put Blue-y in Jack left ear. I taught them how to put on their seat belts. Will took the window seat... then Jack, then me on the isle. 

The pilot started up the engines.

Jack said he wasn't feeling well. I turned on the air, then got up to ask the flight attendant for a plastic bag.

I have no idea how much time pasted. I know we were still on the ground.

I looked over to Jack and couldn't begin to explain what I saw in his eyes. I began to feel the horror of a mother watching her son being tortured.

Jack asked me if it will be this loud the whole time. Blue-y wasn't working. The noise was too loud. I could only imagine what was going on inside of his head.

It was difficult but I told him the truth. Honey, it will get louder. I went on to tell him how sorry I was. Then I got up and pleaded with the attendant to see if they had any ear plugs. There were none.

We were pulling away from the gate. Jack looked at me. His eyes pleading with me to make the sound stop. He threw up. His breath was short. He gasped. His hands flipped over so his palms were up. His eyes rolled back in his head. He had passed out.

I was numb, frightened... and relieved.

I put my fingers in front of his mouth to make sure he was breathing. I rested his head on my knees. I wondered if he could sleep until we landed. I kissed his head with hope.

My mind was filled with what ifs. Should I have panicked and demanded they go back to the gate so I could take Jack off the plane? I doubted myself. What was the right thing to do? It didn't matter any more. It was too late. We were in the air.

About half way through the flight Jack woke up. He was weak and quiet. His eyes were full of the same pain, fear and panic. He told me he didn't feel well. I began to quietly cry.

Not knowing what I could do to help him, I desperately wanted him to pass out again. I poured water of a napkin and held it on his head. I held my hands over his ears, but the look in his eyes remained. He began to quietly cry.

I wish I had taken him off the plane.

My mind was racing. What could I do? I remembered I had put a bunch of fruit chew candies in my purse to calm the kids if I needed to. I opened up a package and pulled out an orange Nemo-shaped candy. I smooched it a bit and put it in his right ear.

I put pressure on both Blue-y and Nemo. I asked if it was better and Jack nodded. Then almost like a light was switched off, he faded to sleep. His body just couldn't take the noise. It shut down.

When we were about to land, the flight attendant told me to sit him up right. I protested a bit. The attendant demanded a bit more. Since I didn't want to be arrested when we landed, I propped him up. Tear filled my eyes because I knew it wasn't the right thing to do. He woke up. I kept my fingers firmly on Blue-y and Nemo.

I looked over and William was pretty much upside down in his seat. I couldn't let go of Jack so I called to him. He was scared. I told him not to worry. I kept talking to him as we landed.

At the gate, the engines shut off. We took out Nemo. I hugged both of the boys and told them I was proud of them. I told Jack his was brave. He gave me a big smile. I thanked William for being so patient during the whole flight while I helped Jack. And he also smiled.

As we were ride on the tram to baggage claim, I asked William if he had fun riding on the plane. He said, Yes, I did... but we don't have to do that again.

I couldn't agree more.

When I got home I put a phone call into the audiology department at Childrens Hospital. I'm still waiting for a call back.

Life Goes On

Wow, I can't believe how long it has been since I last wrote. Sometimes it all seems so overwhelming that you just try to make it through another day. You stop looking at the big picture. You stop taking a moment to reflect on what is happening around you... or inside of you. You lose clarity of thought and time passes all too quickly.

We've come along way since early December - some good, some not so good.

Jack is no longer working with his reading tutor. She quit him.

I shouldn't say it that way, but it's true. She did so with the utmost respect for Jack. He wasn't making any progress. She didn't think it was fair for Jack to continue to give up an hour of his weekend. She didn't think it was fair for us to keep paying. And of course, not fair for her to keep spending time with us either.

I understood the Jack part. He had gotten very sensitive about his weekends - especially his Saturdays. If we even suggested we were going to go out of the house either to the store or the park or anywhere, he would break down crying. He would plead, This is my only day to stay home. Please don't make me go somewhere. Sundays, he would go to see Shira without much fuss. Unfortunately, I could see the anticipation on his face to go home back the moment we drove out of the drive way.

I figured with school being extra exhausting, having to work with the speech therapist on Tuesday, doing the regular amount of homework, and then extra time every night before bed practicing reading... he was exhaust and wanted time just to be a kid. Can you blame him? I can't.

As a full-time working executive, with two young children, and one with lots of extra special needs... I too just want time to be... yep, a kid. Can you blame me? I can't.

I also understood how she was concerned that we keep paying for nothing. Because that's what no improvement is... nothing. I appreciated her concern. It is a significant cost. She could have easily keep working with him. Cashing our check every week. And in the end, she's be richer but Jack wouldn't.

I also understood that Shira had to switch from seeing Jack on Monday evenings to Sundays because she had to go back to work at Childrens Hospital full-time for financial reasons. I was just grateful she still agreed to see Jack. She also has a little boy named Jack. She gave up her Sunday with him for my Jack. So I could see that giving up time at home for 'nothing' was hard on her too.

While that chapter closed, the next opened up quickly.

Shira called me a few weeks later - just after Christmas - and asked if it was okay for her to share Jack's story with some of her colleagues at Childrens. I could tell she was unable to reconcile why Jack couldn't, or wouldn't, make progress. I suspect she has been able to teach every child she has worked with something.

And if it is any consolation, Jack did learn the vowels. Well, for the most part. He'll tell you, A, E, I , O... and.... um....

So skipping forward to today, Shira has spoke with the head of audiology at Childrens and a few other knowledgeable people there. There were obviously no easy answers. They are recommending a full battery of tests to see where he is at and then try to determine what we can do for him.

Good thing I already scheduled a battery of tests. As Shira was exploring options at Childrens, I had called the head of the Learning Disability research in the Psychology department at the University of Denver, Dr. Marge Riddle. I found out as part of their research program they can perform a complete battery of tests to look at the whole child... to access every aspect of how the child learns... how their brain functions. Was I going to far? Was Shira just trying to explain something that was unexplainable?

I was going over all of this with Dave. I explained that tutoring wasn't helping and that we could get him tested for dyslexia, or for ADD, or we could go back and have more auditory processing tests done. Maybe we'd have to go through a series of tests and tutors until we found something that worked, that answered our prayers. ...or we could just keep helping him as best we could and hope it all works out. I mean he's bound to make progress eventually - little by little. Right?

Dave said, Why don't you just find the top expert in the field, have him tested, and then we will know what to do. It sounded so simple, so logical. It no longer sounded excessive.

I also remembered how I describe Jack to others at times. He is a boy that is stuck inside his head. He has a hard time understanding people when they talk and he can't read. No way in. He has a hard time speaking what he is thinking and he can't write... or type. No way out. He is forced to interact with the world differently, silently, and with pause... yet his mind is capable of much more.

Every so often I am reminded of this. He gets really excited about something that he is thinking about but the words don't come. He spits out a few words, often not making a lot of sense. He eventually gives up. Stuck. He asks me almost daily to read things to him and to explain things to him, because this is his only choice. Stuck.

So a month from now, he will go through a complete battery of test. Two days of testing. Seven tests in all - more if Dr. Riddle feels she needs more information. We will receive a complete report - summary, diagnosis, and recommendations. We will have a greater understanding of what is going on inside of his mind. I am fascinated they can do this. I am also scared shitless.

Another Ah-ha Moment

Life has been moving on.

As the days progressed, Jack has become more and more like his old self - a very happy boy.

I thank God every day. Whether it was something we did to help him or he just figured it out on his own, I will never know.

Over the last couple of week, Jack has been reading to me at night. He bought a book home, a Level 2 reader, and relishes his time reading with me at night. As we read, I help with words he doesn't know. I help a lot.

What I have noticed during this time is that he rarely uses word attack skills (the ability to try to break down a word and sound it out.) At his age and with all the work his tutor is doing with him with phonics, he should be trying this approach more often.

Then switching over to sight word abilities, he may recognized a word in the first sentence, such as the word 'time', but when the word reappears again on the same page, he has no idea what the word is. He just looks at me and says, I don't know. As if the word isn't actually on the page.

When he reads the word 'one', he always says 'now'.

He rarely has been able to read a 'wh' word, such as who, where, what, when, and why. For some reason, these always draw a blank.

This is a child that do math - many grade-levels ahead of his time - in his head. Why can't he read who or what... we've practiced them a million time. Do they all look the same to him?

For two weeks, I'm thought about this - maybe to the point of obsession. I have read and re-read the Mislabeled Child brain functions and learning disability descriptions over and over. I remember how in Like Sound Through Water, the little boy with APD failed at phonics-based reading, but when his teachers switched him over to sight word reading, he soared. Phonics, sight word, and whole word learning - none of them have worked so far for Jack.

When I think of it all, it just doesn't seem like it can all be hearing related to me.

... and math symbols! A few weeks back, Jack came home with a 50% score on math homework. It was basic addition. He can do that in his sleep. His scored 100% on word problem math homework, which would be harder for most people.

Out of curiosity, I verbally gave him the math problems that he got wrong on paper. He got them all right. So I asked him if the teachers read the word problems to him, and he said yes. Then I asked if they read the math equation work to him, and he said no. As I looked closer at his homework, I could see by his erased attempts and final answers, he was confusing +, -, and =. I pointed this out to him and he told me, I only do math one way. He then showed me left to right with the = at the end. It was clear, he needed equations to be in a certain order to understand them.

I asked the teacher if they can read the equations to him too, and they agreed. Last week, Jack was moved to the advanced math group and is soaring. I was convinced. Mixing up math symbols can't be phonics-based - can't be hearing related.

So I am facing my fears. I called the Children's Hospital today about a learning evaluation. When the director called me back, we chatted about my observations and she - along with every other education-trained person I have access to - confirmed it looks like something other than APD.

I'm filling out paperwork tomorrow. The first open testing spot is in two months.

God bless his little heart. He is such a bright, happy kid... with a beautiful smile. Why does he have to struggle so much?

I couldn't love him more than I do right now.

THis and THat

Over the last few weeks, Jeff has been working on TH, V, and F sounds with Jack to help Jack stop talking with a lisp, or as some would say, his baby talk. As Jeff worked with Jack, he would seem to say something correctly and then just end up repeating the same errors again. Each session was almost like starting over. He had spotty success at best.

I also noticed a difference in Jack's demeanor during his sessions recently. He is becoming easily distracted and isn't always doing as Jeff asks. Jack had always been excited to see Jeff in the past but this was slowly fading. I was beginning to wonder if he was tired of his sessions or just becoming a little punk - as we say when one of the kids is getting feisty.

Then one day, I watched Jeff do an amazing thing. He talked to Jack just as he normally would, but he switched his TH sounds with V and F sounds... and V and F sounds with TH sounds.

First, it was amazing because he just did it. He just talked, like normal, but substituted sounds within words. As if he had practiced for weeks. At least I know I would have to practice for weeks to so such a thing. Second, it was amazing because Jack just talked to him back... as if you and I were talking... as if everything was normal... as if Jeff was talking correctly.

I was speechless. I could feel my jaw drop.

This was the first time I truly got an idea of what it must be like to be Jack. Why he gets so tired listening during a full day of school. Many words must sound the same him. As someone speaks, he is constantly translating and trying to make sense of it all based on the context of the discussion.

I was taken back because I couldn't imagine how Jack was going to learn to pronounce the sounds correctly if he can't distinguish them apart? Jeff confirmed this by telling me if Jack can't hear the difference between the sounds, we can't expect him to learn how to correctly say sounds by listening to them. I was trying not to panic. Thinking logically, it made sense to me, but how the f--- was he going to learn then?! I supposed a level of panic set in anyway.

He continued to say that he'll teach Jack the mechanics of the sounds and then show him what written words use what mechanics... and maybe he'll eventually put it together. I was always told that hope was not a strategy, but I got the clear indication that hope was the only strategy we had at this point. So I told Jeff, Great, let's begin. What else was I going to say? This is crazy - we give up.

During the next session, Jeff began by having Jack watch his mouth as he said sounds and words. Then he gave Jack a mirror to watch his own mouth as he said sounds and words. Jeff would also point out what his tongue, teach and cheeks should be doing during the sound. He'd place Jack's hands in front of his mouth so he could feel how the air should flow as he spoke. Then Jack would try himself.

With every mistake, Jack became less engaged... more distracted. Jeff was thinking we may want to play loud white noise to try to eliminate Jack's ability to hear the sound completely. Something about he may be trying to hear the difference, instead of feel it. It sounded intriguing, but I had a bigger problem. After two sessions of this new approach, Jack refused to go back. He said it was just too hard.

So I did what any respectful mother would do, I bribed him. If he would go to two more sessions, he could sleep over at his best friend's house. Now I wasn't completely on the up and up, because he was already scheduled to go to to Owen's sleep-over birthday party in two weeks - but it worked, so I used it.

As I began to watch his next session, I began to think how I was going to keep him trying... what bribe would I use next?

Then I heard Jeff say, Yes, that's it! and he gave Jack a high-five. Jack did it again... TH. And again... TH. And again.. TH! He got it. I wanted to get up and dance. Okay, I confess. I stood up and did a little butt shake.

While hearing him correctly pronounce TH was exhilarating, what really touched my heart was Jack couldn't get enough of it. He knew he got it right and he began to say TH words one right after another. He didn't want to stop.

The proud look on his face said it all.

Another victory.

I later learned while talking with a friend at work that has been an educator of some kind her whole life that it wasn't a strategy of hope as I originally thought. This is the method used to teach deaf people how to speak.

Imagine that.

A Better Tomorrow

The word tomorrow for me stands for hope. Because hope is about the future and for every day I have lived there has always been a tomorrow.

For a couple of weeks I hoped for a better tomorrow for Jack. And day by day, my prayers were answered. While he doesn't think his days are perfect, he is more at ease, less disturbed by others, and generally happy again.

While I'll never know what really made the difference, I had three main strategies to help Jack.

First, we changed his routine. The idea was to give him more energy and reduce his stress levels. We started going to bed earlier. About an hour earlier - which was a little hard since we're working parents, but we're all getting used to it. We are making sure he eats protein in the morning for breakfast. He loves yogurt so that was easy. And we canceled any non-essential activities. We kept soccer, of course, a sport for Jack is essential... and so is speech and his tutor. The rest, gone.

Second, at the right moment, I told Jack I wanted to help him. That I didn't know how to help him, but I wanted to help him. I was 100% sincere and he knew it. We decided we would figure it out together, day by day. I told him that same day, if there is one person he can tell anything to - it was me.

That night, out of the blue, Jack blurted out that when he goes to bed, he gets scared because of the movies.

Movies?! We haven't been talking about movies?!

I went with it... and he went on, While I get headaches too, I also sees the movies at night. They become real and that's why I don't like night time.

Ah ha!

Ah ha #1: No wonder why he doesn't like to sleep alone and when he does he stays awake as long as he can.

Dave was in ear shot and said, but we haven't watch a movie in a long time. Jack replied, I remember all of them for six years. Oh my, I thought, the poor child has been having nightmares and never said anything.

Ah ha #2: He believed me. He can tell me anything. It was working!

Little by little he shared with me more of what his life was like through his eyes. How he felt when certain things happened - at home, at school. Mostly I just listened, understood, and let him know he wasn't alone.

Third, full disclosure.

No more softening of the truth. No more sugar coating. No more empty promises. Just the facts, Jack.

I began full disclosure by showing him a book I was reading about Auditory Processing Disorder, called When the Brain Can't Hear: Unraveling the Mystery of Auditory Processing Disorder. It was a highly recommended book, a little bit of doctor talk, but understandable. We talked about his diagnosis and how his brain can't hear right, even though his ears hear perfectly. We talked about how when you put food in a mixer it gets all mixed, and that's kind of what happens to sound between his ears and his brain.

He said he needed to learn more.

I began reading the book to him.

The book starts with some examples, so I read about a boy named Jeff who was in 10th grade. Jeff was a football player. Jeff struggled throughout his school career and finally in 10th grade, he was diagnosed with APD. The the first time, Jeff understood what was wrong. He had a name for what he was experiencing. And he finally knew he was going to get help. Jeff cried.

We read about Jeff three times. Each time as I read how Jeff would come home from school exhausted because he had to work harder than all the other kids to listen at school, Jack exclaimed, Just like me!

Jack was no longer alone.

After Jeff, we began reading about the the diagnosis and treatments for ADP. Jack always listening intently. Asking questions. Making sure he understood what I was reading. At one point, I was a bit tired so I stopped reading ahead and filtering. I read (paraphrased), Some children catch up after rehabilitation and no longer show signs of APD. Other have less success and continue to have problems with listening, learning, and communicating through their lives.

My heart dropped inside. I shouldn't have read that.

I looked over at Jack who was staring at me with a serious face. I said, Did you understand that? He said, I may not get better.

I didn't know what to say. I watched as he thought about it, and then we kept reading.

Maybe this was the peace that Jack needed - to know this is who he is and he is not alone.

Something More Important

I was going to write about my parent teacher conference this week and tell you all about Jack's progress and new adjustments to his accommodations plan. However something of greater importance has occurred.

This week we have seen our happy child, become sad and even angry at times. He had an ear infection so I was hoping that this behavior was attributed to the fact that he did not feel well and couldn't hear so well.

On Monday, I kept him home because his ear hurt and he begged to stay home because he was afraid he would cry in school. Tuesday, he cried because he didn't want to go to school. Wednesday, he cried in the morning asking not to go. We made an agreement, he went, then he asked the teacher to call me so he could come home - before lunch. Thursday, he cried again.

Thursday night on the way home from soccer, Jack stated with the seriousness and sadness of person who just lost their dog, My life is awful.

When you hear your child say something like this, your first reaction is to say, No it's not. Then continue to remind them of all the wonderful things they have and can do. We did this, of course. In fact, Dave spent an hour talking with him . At the end, he said, Ok, my life is just average then.

What we forget is that despite all of the wonderful things, they still feel like their life is awful. It's simple... Whatever it is that has them down is greater than the sum of all the wonderful!

It is important and not something to dismiss.

The next morning, Juanita told me he was explaining to her how awful his life was. And again with me that afternoon.

Part of me wonders if it has been building up. Looking back, his behavior has been changing over the last few weeks. Part of me wonders if his ear infections made it harder for him to understand others which in turn, made it worse - to a point of outward expression. And yet another part of me wonders if it's just a phase. Therefore if we do nothing, it will go away.

No matter what caused it. I know we need to figure out what it is. My gut feeling is it will not go away.

Here is what I observed.

Jack has to work harder. He has to expend more energy to listen than the average person. The other night I was reading the profile examples out of a book about Auditory Processing Disorders (more about the book at another time) and as I was talking about a boy  named Jeff, I read the sentence that said Jeff was exhausted by the end of the school day because he had to work harder to listen all day. Jack stopped me and said full of emotion, That is just like me. He appeared to completely relate and relieved he wasn't alone. 

Maybe reading the stories about Jeff and other kids with APD freed Jack. 

Jack can't keep up. Social interactions are harder for Jack. I saw it on the soccer field while I was coaching. The other boys talk fast, so he can't understand enough to keep up in the conversations. (Ok, not sure they qualify for conversations which, of course, exacerbates the problem.)  The other boys call Jack out on how he pronounce words. I can still see the look on his face. And when they tease playfully as friends often do to each other, Jack has a hard time catching the subtleties in the speech and he thinks they are teasing him to be mean.

What I observed in 1/2 hour on the soccer field must happen to Jack all day at school. On the soccer field - amidst all the chaos - he fell to the ground, hid his face, and started to cry.

Jack internalizes everything. While going through our bedtime routine one night this week, Jack blurted out, I don't like movies because I get headaches and they are real for me at night. He began to tell me about the swirl thing (we watched a comedy where a guy fell off a bridge into a vortex to enter a time warp.) Here is a child that has likely been having vivid nightmares for years and never mentioned them. Not a peep. And why tell me now and never before?

I always knew Jack was sensitive and reflective. I know know these traits run deep, very deep.

Adding these observations to some of his recent comments... School is too crowded. Everyone is mean to me. Why can't we just stay in the house . Nobody listens to me.

I have a better picture on what it is.

But not idea how to make it better.

Maybe it is just a stage.

I want my happy, sweet Jack back.