Jack's Journey

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...

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.

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.