Caking for a Cause

Jared likes to say, "Mom, you're a good cooker. I wish I could be a good cooker like you. I wish I could make cakes like you. Then people would like me." Even though we talk about this statement often and even though we discuss why he brings it up, it still makes me sad. He always seems to be wishing to be liked. And, he is liked! I hear about it all the time. He just feels like he's not "good enough" to be liked. As you can imagine, my heart is crushed knowing he feels this. But what do we do about it? We've got to keep working on his self confidence and keep up with his therapy.

Which brings me to why I haven't written in a while...

His therapy costs money and insurance won't cover it. We need more money. I needed to help suppliment the household income and (in my mind) that could be done in 1 of 2 ways. I would either need to get a job somewhere like Starbucks or open up my legal baking business. Since my own business means setting my own hours, that was my choice. I want to be here to help Jared in these pivitol years of brain development.

So, today I had my grand opening of CakesAzucar LLC. My grand opening was a huge success! Now that the today's event is over, I can fall into a nice routine. I'm very thankful for that.

Grace and peace to you from God our Father and the Lord Jesus Christ. 2 Corinthians 1:2 (NIV)

Because Not All Great Minds Think Alike

I want to continue to share some things I learned last week.

• 15% of the U.S. population has some type of significant learning challenge. In other words, 15% qualify for special ed. 85% of kids are in special ed because they can't read. The problem is, most of the special ed teachers are trained for medical needs. They are NOT reading teachers!
• Difficulty with basic reading and language skills are the most common learning challenges.
• With early identification and intervention, children with learning difficulties can learn strategies to achieve like other children. Unfortunately, this "shuts off" by 3rd - 4th grade! You've got to get them in intervention early.
• Learning difficulties should not be confused with other disabilities such as mental retardation, autism, deafness, and behavior disorders.

Sally Shaywitz, M.D., from the Yale Center for Dyslexia and Creativity describes a learning challenge as "A weakness in a sea of strengths". I love this quote. This is her definition: "People with learning difficulties generally have average or above average intelligence, but their learning challenges cause an unexpected gap between their perceived potential and their performance in some academic area or areas."

And, finally, here are some things that I learned about Jared and his challenges... present and future:
These kids have difficulty spelling and writing.
They cannot memorize very well.
They don't think, a lot of the time, before they do things.
They don't do flashcards very well.
They absolutely cannot visualize a word!!!
They don't use big words in writing. You will usually see this in 6th grade and higher grades.
They are not big risk takers, because of it. {enter my sadness, as folks who know me know I have taken HUGE risks in my life, traveling the world and even being thrown in prison in a 3rd world country.} 
Their best friends are calculators, as they get older, as it's not as easy to flip numbers around.
They have a hard time with math. The words subtracTION, multiplicaTION, addiTION, & diviSION sound very similar to kids like Jared. They hear the "TION" sound and are still processing that and it can be confusing.

And the list goes on and on. I'm so thankful to have learned some things about my son I would never have imagined. This is all so wonderful in helping him find various ways to cope in the future.

Whatever you do, do it wholeheartedly as though you were working for your real master and not merely for humans. Colossians 3:23 (TLB)

First Day of School

  

His "Intervention"

I'm anxious to see how Jared's school year will be. As I was talking with the elementary principal this morning, she said she will most likely be taking Jared out of the reading portion of the day 3 times a week, for an hour each time. She will wait for a couple weeks for him to get used to the school schedule and then start his intervention plan. What a blessing this will be!

So, what is will this intervention entail? The principal believes that if you uncover the cause, you often discover the solution. How do you do this?
PROMOTE - a noted deficiency should alert them to look for a proficiency of a different kind.
ACCOMODATE - take him out of a part of the class schedule that he will probably struggle with to help him learn a different way, perform verbal tests, multiple choice questions, etc.
REMEDIATE - using phonemic vocabulary programs, therapy, etc.
COMPENSATE - help him with tools, i.e. "i before e except after c", etc.

I will continue to work with him, daily, until he can start the intervention program. I know this will mean long days for him, but we can't just take 2 weeks off. I’ve heard it over and over again. Time is critical! We already completed 120 school lessons this summer and we're not finished yet. His principal has a great program that, she feels, will have him reading smoothly in no time. She said she has worked with dyslexic kids for over 25 years.

Speaking of DYSLEXIA, I wanted to share a few more things the expert shared last week at the seminar:

• The state of Texas is a "Mecca" for dyslexia information. Years and years ago, Barbara Bush went to the national institute of health because one of her children had dyslexia (not George W). Because of that, Texas is the best state for recognizing dyslexia.
• It’s carried on chromosomes 1, 6  & 13. Chromosome 6 is immune system chromosome. This means kids usually had frequent upper respiratory infections or constant drainage. They often say, “What did you say?” Congestion is blocking their ears. Isn't that interesting? I mean, Jared has always been labeled with allergies/asthma. Now, I'm hearing THAT is a sign of dyslexia??
• Dyslexia affects 20% of all children.
• Dyslexic kids are good at using their hands. They have an uncanny ability to see how things work – pull them apart and put back together. They are usually good at visual/spatial things. Many extreme athletes are dyslexics. However, they can also be clumsy, or tend to fall or trip.

I still have a great deal of notes to share from the seminar, so I'll just keep sneaking them in the blog.


By day the Lord directs his love, at night his song is with me— a prayer to the God of my life. Psalm 42:8 (NIV)

A Resonating Story

As I mentioned the other day, I had the privilege of hearing an expert on learning challenges give a seminar to school staff. There are so many things I learned, but I first want to tell you about her journey with her 2 sons. This is the reason I wasn't sure if I should mention her name, as I'm sharing her story with you all. So much of what she said really resonated with me. Because of her journey, she now teaches teachers how to help dyslexic and APD children with an intervention program.

One of her sons, Cooper, is severely dyslexic. He was expelled from 3 preschools. The teachers said he was difficult to understand and couldn’t communicate. She’d always get called to the office because he wouldn’t listen or he would sit there and draw lines. She didn't know what to do, so she went to experts to figure out what was wrong.  What was Cooper’s 1^st diagnosis? ADHD. If you can’t process your native language, people see it as an attention problem. So, they medicated him at age 4. Within 6 weeks it wasn’t making a difference so they took him off medication. His teachers didn’t like that, and he was expelled from his 3^rd preschool.

At 4 ½ years old, his preschool teacher told him he would have something called dyslexia. He’s smart, but doesn’t compute and follow directions. The teacher encouraged her to see the first 10 doctors – adenoid doctor, tonsils doctor, psychologists, a few psychiatrists, ear, throat, etc. They spent a ton of money. People would tell her, “He’s just not ready” or “He’s a boy” or “It’ll click one day” (all things I’ve been told). But, it wasn’t until he threw up every single day of first grade, while at school, that she knew he needed intervention. 15% of Cooper’s body weight was gone. He had 2 exploratory surgeries. Once they started intervention, the throwing up stopped.

She worked with Cooper every day for four years. Private schools wouldn’t take him. She would go up to the public school and work with him in the hallway or library, during school. You shouldn't "punish" children by making them work even more after school. Early intervention is best. And if it’s intensive, kids will flourish.

In high school, she “paid” another boy in Cooper’s class with pizza, so he would come over after school and go over his notes with Cooper. Eventually, he learned how to thrive by listening to books or lectures. He became extremely good at math and was given a drafting calculator because he was good at head math. Calculators are key for dyslexic children. They found an advanced math teacher to tutor him. He took trigonometry in high school, graduated from a university, and now she still feels that he is still destined to be a scientist one day.

Dyslexia is inherited. Cooper's mom (the one telling this story) is dyslexic. She guessed on her SAT, but she got caught, as it was the lowest score in her entire high school. The second time she took her SAT, she cheated. Just hearing her personal dyslexic stories was inspiring to me.

Cooper's older brother has it, but it's much milder. He has some spelling problems with words like "does" or "because", but he was always tagged as lazy. In his senior year in high school, he had to write a 37-page paper and he wouldn’t let his mom read it before he turned in his first draft to the teacher. He spelled "does" wrong. He spelled "dose" instead. Spell check didn’t pick it up because it’s a word too. The professor circled it on about every page of that entire paper and at the end wrote “Does??? Dose???” He came home and cried, saying, “I’m stupid”. Even though he graduated and is a marine biologist, he still has never gotten over “does”. He’ll say things like, “I don’t know how I got through college. I’m not that smart.” As his mom will tell you… he’s brilliant, but you never forget things like that.

The best part of sitting through the 3 hour seminar the other day was the speaker’s own personal story. I also learned a ton of other information that will help Jared (and hopefully others reading this), but I’ll post that in another blog entry soon.

Let us discern for ourselves what is right: let us learn together what is good. Job 34:4 (NIV)

Having a Disability for a Day

Jared's teachers and school staff are preparing for the first day of school next week. As all teachers do, they come to school a few weeks early and go through all the school year preparation. This year, however, the new administrator of the school invited an expert on learning challenges to spend one day with the staff. I had the privilege of spending 3 hours listening to this wonderful, thought-provoking individual. I'm still not quite sure if I should state her name, as she told so many personal stories that I'll be writing about in my next few blog entries. Most importantly, she walked each of the staff members through a 1/2 day exercise of what it's like to have various learning challenges like dyslexia, dysgraphia and auditory processing disorder. They all had to attend school with a learning disability.

Some of the teachers I talked with had tears in their eyes. They had no idea the extent in which these children struggle daily. The teachers, with their faux disabilities, couldn't follow directions to even draw a star and felt helpless. Some of them received behavior notices, which I really liked, as I've signed plenty of those for Jared. His teacher from last year cried the entire day because she loves my son so much and had no idea what he was going through. This expert explained the neurology of children like Jared in a way these educators could understand.

The session I attended, in the afternoon, was phenomenal. I furiously took notes and have so much to share. I am proud to be a part of a school that is dedicated to helping children with an intervention program for dyslexia, dysgraphia and APD. I am glad that someone else is invested in helping my child not say "dog" when he's reading "God" (happens quite often). Above all, for the first time I don't feel quite so alone in this journey. His elementary principal already has 80 hours in APD training and assured me of some positive things that she will be doing with Jared. I am blessed.

The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’  Matthew 25:40 (NIV)

Wish There Were Answers

I wish there was an easier way to describe my son's disability. I wish there was a consensus of experts on how APD occurs. I wish there were answers to so many of my questions regarding the neurological disorder.

Last night we were having dinner with my cousin and his wife, who are in town visiting. When they asked us questions about Jared, Ray and I were quick to respond with so many different ways he thinks, things he does, etc. Even though we have answered these questions so many times, it definitely seems jumbled when both of us are answering. Ray has his own way of describing Jared's disability and I have mine. It was interesting to see what my cousins were thinking, as we chatted about Jared's intelligence, math skills (or lack of), repetitiveness, etc. If there were an easier way to explain APD, I'm sure it would have been more clearly understood, but there's not.

The one thing that experts agree on is that APD is an umbrella term for a variety of disorders that affect the brain process auditory information. Another thing that's common in my findings and definitely common with Jared is that people with APD often don't show that anything is wrong because they are so used to guessing to fill in the processing gaps, and might not even be aware that they have misunderstood something. This is exactly what happened with our public school evaluation. The evaluator kept guaranteeing me that nothing was wrong with Jared and that he's more advanced than most kids she knows.

So, now we're walking into a new APD season, where we will hopefully find out more secrets to unlock this mystery. We have one more week until school starts. We have finished the summer cognitive therapy program. Dr. C. still would like to spend 3 hours with him a week, although we're trying to figure out how that will work with his schedule of school and soccer. He will have his school APD intervention program where the Elementary School Principal (recently trained and certified in APD therapy) has stated that she is personally taking on his case. We're 9 months into our diagnosis and we hope that this new school year can help all of us better understand and explain this disability, and most importantly, find new ways to cope with it.

For with God nothing shall be impossible. Luke 1:37 (KJV)

Unanticipated Deformities

This week has been odd. For some reason, I had numerous doctors and dental appointments for myself. Some were scheduled months ago. Some were emergent. Have I mentioned I'm not a fan of pain or doctors? Well, I'm not. And, I have felt some unanticipated pain.

Over a month ago, I developed whip lash. Because I don't like seeing doctors, I kept hoping the pain would subside and I'd just forget about it. It didn't. The ibuprofen wasn't helping any longer so my husband wanted me to see a chiropractor. Just ask the doctor what kind of patient I am. How do people go there and get "adjusted"? Ouch! Unanticipated pain.

Then, today I had an appointment with a urologist. I have this unexplainable pain inside me and have been shuffled from various specialists and that's how I ended up in urology. I assumed I was just going to talk with the doctor this morning. Oh, no. She actually inserted a scope into my bladder to look around. Unanticipated pain.

But here are some interesting things that were confirmed this week:

• By the Dentist: I have extra roots in my mouth/teeth that "normal" folks don't have. I knew there were a couple teeth like that, but I guess all of them have an unanticipated, random root or two. Yes, you find this out by having lots of root canals.
• By the Doctor: I'm freakishly strong. I knew I had a lot of physical strength, as I'm pretty muscular, but apparently it's extraordinarily more than the average woman, according to my grip report. I'm still trying to figure out what to do with this information. Surely, there must be some calling for ridiculously strong women, other than crab fishing.
• By the Doctor: I don't have cancer in my bladder. (I didn't really think I did, but I had to ask her since she was 'all up in there')
• By the Doctor: I don't have cancer in any of my x-rays along my spinal chord. (I didn't really figure that I did, however, a friend will tell you that I have mentioned cancer often with all this unexplained abdominal pain I have.)
• By the Doctor: I have an extra vertebrae in the middle of my back. I've gone my whole life knowing that the reason I'm 5' 9" is because I've got extra bone in there. Oh, and I found out it's called a "deformity".
• By the Doctor: My bowel and colon are not in the normal spot that most folks are. They are lower. Another deformity. I've been on this earth for 37 years and have learned in the past year that I have 3 "deformities" (I had a deviated septum I was born with).

The good news about that last thing is that doctors have been looking in all these female places/organs thinking that my pain was coming from there. Now that they've been through all those and can't find the source, we're learning there is a place we haven't checked  - my lower intestine that's in the wrong place, A.K.A. my unanticipated deformity.

Some experts call these things "deformities". I truly laugh at the word "deformity" because I don't consider myself deformed. Sure, I'm weird... often called "unique", but nobody else knew I had an extra vertebrae or weird placement of internal organs. These things that make me unique are all hidden... kind of like Jared's disability. Most of the world doesn't know he has it. Most of the world will never see his symptoms (hopefully). But, yet, he lives with a pain.

He hits his head, thinking it'll make him think quicker or figure out answers. He puts up the emotional walls so he won't be made fun of, and learned to do that at an early age. My son has no deformities that I know of, but his disability was certainly unanticipated. Yet, just as all my deformities were unanticipated, I now know about them and know what I need to tell certain people/doctors to make sure they can help me in the way that my body needs. Now that we are aware of Jared's disability, we can better communicate with those who need to be made aware.

God blessed us all with our own uniqueness and today I'm embracing my unanticipated deformities and my son's unanticipated disability.

Thank you for making me so wonderfully complex! Your workmanship is marvelous—how well I know it. Psalm 139:14 (NLT)

Days of Greatness!

Since most of this blog consists of sad, depressing, worrisome comments, I thought I'd share some good things that happened recently.

First of all, Jared's Thursday appointment with Dr. C. was his "best ever". It's kind of weird for me to hear that, as last Thursday she nearly gave him a death sentence with his "non-working frontal lobe, non-encoding memory, don't know how he'll make it in school" diagnosis. A week later, this is what she said: He had the most stamina he has ever displayed - hundreds of times more. He read through 60 words without stopping for her. He memorized lots of words for her (she gave me the sheets to show me). He concentrated and worked seamlessly and phenomenally.

Was it because his molars from last week passed through? That was why he was sick last week. Is it because he's not on dairy? That seems to be rather soon, right? Is it a miracle? Is it just a random thing and next week he'll be back to the way it was before? Who knows?

Another really cool thing that happened was at his last swim practice. Not only was Jared's written evaluation great (the coach said there's no other level for him to go to right now!), the coach was so sweet, regarding Jared. The coach and I were talking about random kid things like snotty noses and he told me that he likes teaching kids, but he likes handing them back to the parents, for reasons like that. He had told me earlier in the week that he's taught kids for 20 years, which is why he doesn't have kids. So, you get his drift. Kids aren't his things. He's an outstanding coach, however, so I don't mind the fact that he doesn't want kids in his personal life.

Well, on Friday do you know what he said? Besides stating again that he's taught for 20 years, he said something else. He said that Jared was a great kid (he's told me that about 5 times, but I love hearing it!) and added, "If I were to ever have a kid, I'd want him to be exactly like Jared". Did you hear my heart melt? The only thing better than that was that my dear friend was sitting with me and was able to hear that comment too. She knows what our family is going through, so it was nice to have a friend experience some family joy, first hand. Even with every trial our family has, there's no way I'd ever trade my beautiful son for anyone else. He's my "#1" and I can't imagine a day not seeing that smile. His smile was so big when Dr. C. made her comments and when his swim coach made his comments. I wish I had a camera to capture how proud he felt. I am so proud of him!

This is what the Lord says—the Lord who made the earth, who formed and established it, whose name is the Lord: Ask me and I will tell you remarkable secrets you do not know about things to come.” Jeremiah 33:2-3 (NLT)

Day 7 Without Dairy

The first thing I removed was dairy from Jared's diet. Because he had been on organic milk his entire life, the switch over to other milks didn't affect the finances. In fact, the almond milk that he's been drinking immediately became very yummy to him. He could drink a gallon a day, if I'd let him.

Product labeling has become easier with the words "Contains: milk" in bold at the bottom. I was shocked at how many items had milk that I wouldn't have thought. Even non-buttered popcorn had milk in the ingredients. I'm still wondering what that's about. But, there really are tons of delicious items that don't have dairy. He has seemed so grown up to me all week by asking if he could eat certain things and by telling people who are offering him food that he can't have dairy. He doesn't mind his taco or wrap not having  cheese. That was my biggest surprise, as my boy loves cheese.

And, how's home schooling? Well, I don't know if I can attribute it to the no-dairy just yet, but he's been really good. His reading and concentration has improved. That's either because he knows that Kindergarten is right around the corner and he's ready to prove to everyone that he can make it (his words) or perhaps this no-dairy thing is either helping his brain or just improving his congested state. My son tends to be very congested, and congested ears for an APD kid aren't a good thing. So, we're going to stick to not eating dairy for a while.

As for what comes next, I don't know. Many parents know how difficult it is to design a whole lifestyle around a food allergy... especially if the other child(ren) can still eat everything. Dairy was the easiest, which is why I tried it first. Actually, the ease as well as the congestion issues are why I saw dairy as the best bet for us. Wheat and corn are a lot harder to remove from the diet. And from what I'm seeing, corn seems to definitely be the harder one. There aren't cheat words on the back of items for hidden corn products. Nevertheless, we're praying for a miracle and if that miracle can come faster with diet (even though no experts have said APD is helped with diet), we're doing it!

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)

For the Love of Fish

As I mentioned previously, Jared loves to fish.  He dreams of it. Wishes for it. Longs for it. Enjoys it... like nothing else I've ever seen him enjoy. When I asked about kids with disorders who focus on fishing to Dr. C., she said something opposite from what the websites say. She said kids who don't focus in other areas or even kids who have ADHD can still fish for an entire day without any symptoms. I know kids with ADHD and I couldn't imagine them sitting still for an hour to fish. She said that ADHD can solely mean that kids will focus on whatever they WANT to focus. To me, that sounds like a normal kid... or even a selfish adult. But, I respect her knowledge and according to her, kids who don't have any focus in any area of their lives can fish for a day.

Jared stood outside, by the lake, for 5 hours. Yes, you read that right. He fished for 5 hours, only stopping to eat a little and have more sunscreen applied. He had a lure with no bait. It was the heat of the day. Other people were swimming and boating nearby. I didn't know how he would catch anything. But, after about 5 hours, he caught something. I ran down to the water's edge with my camera. Unfortunately, as someone who is internally uncomfortable with living creatures stopping breathing on my watch, I decided to give the fish some water before I could run up to the house and wake up my husband, the real fisherman.

 

My plan didn't work. I dipped the fish in the water and it took off. He swam, with force, with a $5 torpedo hook stuck in his mouth and eye (eek!) and broke the line. Immediately, my son was devastated. I truly won "Worst Mom Award". That poor child stood there for 5 hours, wanting to catch and eat a fish, and in one second, mom let it swim away with Jared's only lure! I felt absolutely horrible. I felt a little better knowing it was after I took the photos!

When Jared came back up to the house, there was a commercial on for needy children in Africa. You know those commercials... the ones with the really sad looking children, with insects flying around them, with sad music in the background. Jared asked what it was. I told him about kids in the world not having food. He said, "I have an idea. I'll teach them how to fish. Then they can eat!". Aw... What is it they say? "Give a man a fish and you feed him for a day. Teach a man to fish and you feed him for a lifetime." My wise, sweet little boy!

Then he said, “Throw out your net on the right-hand side of the boat, and you’ll get some!” So they did, and they couldn’t haul in the net because there were so many fish in it. John 21:6 (NLT)