I Will Not Rest (and you shouldn't either)

This is a pic of P in his new Irlen Filters.

It's been a long and winding road, folks, but I will not rest until this little boy reaches his potential.

School was so easy for me, I don't even think I ever took home a book to study until college. Really. I scored well on my ACT and was awarded a full 4-year academic scholarship to a local regional university.

And I always assumed that school would be easy for my kiddos too. Especially P- he's got a steel-trap memory and connects the dots in life so easily. But when reading wasn't coming easily to him in first grade, I started researching. And googling. And making appointments and asking questions. Time was flying by! I had to do something NOW!

And down the road of intervention we went.

We did bi-lateral eye muscle surgery for Exotropia, 28 weeks of Vision Therapy, followed by 16 weeks of Interactive Metronome. During this, P also received twice-a-week Lindamood Bell reading tutoring.

Things were better, but still not where they should be. For such a smart little boy, reading was so so so difficult for him. And time was flying by. Why was time flying by SO FAST??????

So I googled "visual processing" and found out about Irlen Syndrome. After two rounds of testing, we found out that P indeed had a visual processing problem and needed 6 filters added on to a pair of glasses to help filter out the wavelengths of light his little brain can't process correctly. Actually, he needs 7, but he wasn't able to tolerate the 7th during testing, so we will see about adding that one later.

I trusted my gut, knew something wasn't right, and found some puzzle pieces to fit together to help P. And we may not be done.... there may still be some puzzle pieces yet to be found. BUT I WILL FIND THEM!

I won't rest until I do.

Blogging With a Purpose

Oh, this blog has been fun! Over the past 5 years, I've shared lots of funny kiddo moments (Notes From School anyone?), bargains galore, makeup and food finds, and of course I've documented several struggles our family has faced, both medical and learning-disability related.

But things have definitely slowed down around here. There was a time I got 20+ comments on a post, and  I feel lucky these days if I get 1. Things are busier at our house and at times my depression/anxiety doesn't lend itself well to documenting much of anything. Who wants to read woe-is-me posts?

Then I check my email and I remember what it's all about- community. I get at least 1-2 emails per week from families who stumble on my blog after looking for help for their babies suffering from an ulcerated hemangioma. Friends, they send me pictures that make me cry big tears. I go to sleep at night grateful that part of WC's life is over, and grateful that her two surgeries have done a pretty good job of removing the remains of the scarring. Being able to provide info for other families about hemangiomas makes my little home in cyberspace worth it.

And the Internet has been such an invaluable resource for me as I've navigated the waters of special needs for both my kiddos. We first dealt with a Sensory Processing Disorder diagnosis (both kids) and poor P has also had to deal with vision problems that began with eye-muscle surgery for Exotropia, followed by 28 weeks of Vision Therapy, an Interactive Metronome program, Lindamood-Bell reading tutoring, and he was most recently diagnosed with Irlen Syndrome. He'll be having Irlen filters added to his new reading glasses in a few weeks and we're hoping we're setting him up for success in 3rd grade. Do you know where I got most all my info? THE INTERNET. Invaluable resource.

So that's why I'm here. That's why I'm still blogging. Because if just one person finds some helpful information from something I post, it's all worth it.

Soap Box Time

I get so emotional when I watch things about vision therapy, the program that P just competed 28 weeks of.

It is so frustrating that as parents we have to do our own research and find resources ourselves.

The fact that we can't trust opthamologists to make a treatment recommendation for us is unbelievable.

If we had "waited" as it was suggested to us by our opthamologist, where would our son be today? Father behind, that's where.

And I worry for those that can't afford vision therapy. We spent almost $4000 out of pocket, and it was so worth it, but what about families that don't have access to funds like that?

Such a shame that insurance companies don't recognize that vision therapy works.

To end on a positive note, though, P has made fantastic strides since we began vision therapy in May. Although I'm not sure that reading will ever be easy for him, his tracking and focusing have improved so much. He also has had the best attitude through this all- I am so proud of him for that. He understands that everything we are doing, and all the hard work he is having to do, is towards the goal of making reading and school easier for him.

As a supplement to vision therapy, he began Interactive Metronome therapy a few weeks ago with our OT and are already seeing progress there as well.

From www.interactivemetronome.com:

The IM program provides a structured, goal-oriented process that challenges the patient to synchronize a range of hand and foot exercises to a precise computer-generated reference tone heard through headphones. The patient attempts to match the rhythmic beat with repetitive motor actions. A patented auditory-visual guidance system provides immediate feedback measured in milliseconds, and a score is provided.

Over the course of the treatment, patients learn to:

• Focus and attend for longer periods of time


• Increase physical endurance and stamina


• Filter out internal and external distractions


• Improve ability to monitor mental and physical actions as they are occurring


• Progressively improve coordinated performance

Since we suspect P has a visual processing problem in the background, IM will hopefully help him in many areas. Our IEP meeting is on Monday, and I'm anxious to figure out what the school will be able to do to help support his education.

Sasha Asks: Your PSA

Today's question is "What is your PSA?"

Mine is "Take Your Baby For An Eye Exam ASAP"

Do you know about the InfantSEE program? Oh, how I wish I did when my children were babies! This program provides a cost-free vision exam for babies before their first birthday.

from the InfantSee website:

InfantSEE®, a public health program, managed by Optometry Cares® - The AOA Foundation, is designed to ensure that eye and vision care becomes an integral part of infant wellness care to improve a child's quality of life. Under this program, AOA optometrists provide a comprehensive eye and vision assessments for infants within the first year of life regardless of a family's income or access to insurance coverage.

Some readers know about P's vision impairment- but if you don't, he was diagnosed with Exotropia at the beginning of this year- at age 7. It's been a difficult year filled with a eye muscle surgery on both eyes, weekly vision therapy for the past 21 weeks, and twice-a-week hour-long multi-sensory reading tutoring. We've come a long way, but still have farther to go, and we aren't sure what the final outcome will be. Will he always be visually impaired? How will this affect his ability to learn in school, and what about normal life thing like driving?

I struggle everyday wondering, "What if we had caught it earlier?" Honestly, I don't know. He had all his regular well-child visits, and nothing was ever noticed during those exams. I even took him for a visual exam with a local opthamologist before K and it wasn't caught then either.

This paragraph from the InfantSEE website echoed my thoughts: Former President Jimmy Carter and First Lady Rosalynn Carter have pledged their support for the program for a very important, personal reason: They have two grandchildren with amblyopia. For one grandchild, the condition went undetected until he was well into grade school, when classroom difficulties made the condition apparent. Had a program like InfantSEE® been in place then, he may have been treated with far less effort and would have found academic success sooner.

So my PSA to you, and everyone you know, is PLEASE PLEASE take your baby for an InfantSEE exam with an optometrist. They are better trained to locate these types of problems. If you are local and want a recommendation, we have a wonderful pediatric optometrist who is trained in pediatric optometry and vision therapy and rehab.

If you missed the opportunity for the free exam, I still encourage you to have your child examined by an InfantSEE doctor. You don't understand how much your child's vision affects their learning experience until you go through something like we have.

I'd love to read about your personal experiences and your PSA- leave it in the comments, or blog about it and leave a link.

Today

I am ordering Lady's Antebellum's new CD, which is released today. Amazon has it for only $8, no tax, no shipping if you have Prime.

Speaking of Prime, mine expires today!

P has vision therapy today after school, then I'll be attending K and 2nd grade curriculum meetings at our elementary school this evening.

Since our evening will be a bit crazy, I plan on tossing some chicken in the crock pot along with some Archer Farms Hawaiian Style BBQ Sauce when we get home. It just needs to cook on high for 2-3 hours, and that will be just in time for me to grab a quick bit before heading to the school.

In other news, P had his first two fall baseball games last night, and they went great! I am SO glad he has found a sport he enjoys, and bonus! It just so happens to be my favorite sport too.

What are you up to today?

P's Vison Issues

It's been a while since I have done an update on P and his vision issues, and Kelly's Korner is hosting a Show Us Your Life about special needs today, so I thought this was a good time. Honestly, his Exotropia diagnosis just floored me, and the subsequent surgery and therapy have been all-consuming.

P turned 7 years old in August 2010 and started 1st grade. We knew when school started last fall that his reading skills weren't quite up to par with his peers. But since we were dealing with some Sensory Processing Disorder issues like his sister also had, we weren't too concerned. We figured that as his SPD issues improved, his ability to sit still in class and concentrate and learn would improve too. Testing after school started actually showed him to be at the level they expected for entering 1st grade. However, at home he still continued to have difficulty with reading, getting frustrated and often saying "I just can't!". So we took a pretty laid-back approach and didn't push him, and I most just read to him, rather than have him try to read to me.

After the holidays, I found out that he had been put in a remedial reading group at school. I was surprised, because he is so bright and to think that he had learning disabilities was just so unexpected.

I first thought we needed to rule out vision problems. Both Mr. Sasha and I started wearing glasses as kids, and even though P had a perfect eye exam report before K, I figured it wouldn't hurt to have another exam and see if there had been a change.

They gave us our diagnosis within a few minutes of seeing him- Exotropia. Basically, the muscles in his eyes were causing his eyes to turn out, and he was having to work extra hard to try to keep them focused. The condition had evidently been there for quite a while, and up until trying to learn to read, he was pretty good at keeping his eyes focused together. But because reading was a stress on his eyes, they would get tired and he was losing the ability to bring them together himself. And he had lost his binocular vision, which is the ability to use the eyes together.... so when he could focus, he was seeing double. No wonder he couldn't read!

The pediatric opthamologist said his case was severe enough to schedule surgery the next week. The suggest surgery when the measurement is over 10-12, and his was a 20. (I wish I remember exactly what those measurements meant, but I have so much info swimming in my head these days....)

During the surgery, a muscle on the side of each eyes was cut and moved to the correct location. The doctor said the surgery went well and he'd see us back in six weeks. So we left thinking that in 6 weeks, P's eyes would be able to work together and our problems would be solved.

FF 6 weeks, and sadly, he just wasn't where we thought he'd be. Cosmetically, his eyes were lined up correctly. However, his brain hadn't quite figured that out and he was still seeing double and didn't have any depth perception. The doctor said sometimes it takes the brain longer to figure out how to use the eyes correctly. I had read a bit on vision therapy and the doctor said he didn't recommend it because in his experience the brain would figure it out on it's own and he's see us at the 6 month post-op mark.

This is where my momma-bear tendencies kicked in. 6 months? We couldn't wait 6 more months!

Thank goodness for the Internet and Facebook! I posted about our struggles on Facebook, and a friend who has experience in things like this put me in contact with an out-of-state OT who was nice enough to discuss our case over the phone and recommended strongly that we find a vision therapist. My friend also referred me to a special needs teacher who does reading tutoring using the Lindamood-Bell method.

So we've been doing vision therapy (one hour long in-office session a week, with daily eyes exercises at home) and the hour-long reading therapy twice a week for a few months, and we area already seeing some progress. He even got a hit at the baseball game last week, which is quite a feat when you see two balls coming towards you!

What I am most proud of is P's attitude. He's excited to go to his therapy appointments, and has even willingly left a swimming birthday party to go to an appointment. Although the home eye exercises are hard, he tries hard and we are figuring it out together. I feel so blessed.... I know it may be a long road, but we'll get there!

Navigating the Waters

Drowning somewhat.

I'm in the midst of figuring out what sort of accommodations WC will need for K next fall (I'm telling you, these people need to be PREPARED for her) and also working on getting P the vision assistance he needs.

I am not feeling very welcome in Holland.

It's not at all what I planned. I wish I was an eloquent writer and could adequately express to you how I am feeling right now. I love my kiddos with all my heart, and can't imagine life without them, but UNCLE.

WC's IEP evaluation is tomorrow morning, and the Mr. is researching a local vision therapy place today for P. If all goes like we think it will, he'll be doing vision therapy twice a week along with twice a week Lindamood-Bell reading tutoring.

Other issues as hand: losing 30 pounds, continuing my running (next up: a 13K relay leg in May), and cleaning up/organizing our on-going home remodel. The Mr.'s dad is in the hospital, the dog needs a bath, and I don't like my nail polish today.

So how you doin'?