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Monday, July 29, 2013

New Diagnosis; New Therapy (Part 1)

Kayla has found herself with a couple new diagnoses. The main one is Convergence Insufficiency. She was also diagnosed with far-sightedness and Amblyopia. Getting these diagnoses have been a few years in the making.

In 2010 we were noticing that Kayla was squinting, or closing, one eye a lot. But especially when she was reading or just looking at something in a book. A few years prior to that she had learned how to wink and we thought she was just doing that, in excess. But in 2010 I became more concerned with how often she was doing it because it didn't appear to just be winking anymore.

She went to an ophthalmologist who did the standard eye test and dilation. He didn't find anything; only said she was slightly far sighted, but not enough to need a prescription. When I asked about her eye squinting he said she probably just developed a tick, or it was just a habit, and she would grow out of it.

Since he didn't find anything wrong with her eyes I didn't concern myself with it too much and didn't pay much attention to her doing it anymore. We followed up over the next 2 years with the same results. Actually, I might have said that she wasn't doing the squint anymore because it had become so common that I wasn't even paying attention to it.

Leading up to this year's check up I began worrying about her eyes again. I couldn't pinpoint what it was, but something was nagging at me that there was something going on with her vision. At her check up in April he now said she needed a prescription, but otherwise found nothing else wrong.

Earlier in the school year she had an Assistive Technology evaluation and one of the things they mentioned was she has trouble copying from the Smart Board to her desk; that she loses her place and it's hard for her to copy from that distance.

Her resource teacher kept saying that she had trouble with one-to-one correspondence.

I said it wasn't that Kayla didn't understand one-to-one correspondence and that it wasn't that she didn't know how to do one-to-one correspondence, but instead, I felt there was something going on with eye-hand coordination and her visual motor skills. She knows what one-to-one correspondence is ... she knows to count the objects, or the lines on a number line (as an example), but what happens is that her verbal counting doesn't match in time with her fingers touching each object ... or she'll skip touching an object that she's counting. (I really should videotape so it makes sense what I'm describing). I just didn't feel like it wasn't something she couldn't do ... she knows to rote count in one-to-one and she knows what is being asked of her ... I just felt there was something else going on.

I mentioned that another mom told me about a child she knew who was doing vision therapy. I didn't know anything about what this was, or what his diagnosis was, I just felt like there was some visual motor/eye-hand coordination issues going on with Kayla. Her resource teacher told me about an optometrist office that advertised vision therapy, but other than that they (the school) couldn't do anything about it or diagnosis Kayla with anything eye-related.

We finally got an appointment at this optometrist office and that is where I first heard of Convergence Insufficiency and Suppression. He also said she has Amblyopia, otherwise known as lazy eye. That one surprised me because I always though 'lazy eye' was obvious, that you could see one eye turn in or out. Kayla's eyes have never done that.

I did what anyone does these days when looking for more information - went to Google to look up both of these diagnoses.

Amblyopia is the lack of development of central vision in one eye. It can be a result of failure to use both eyes together. It is either associated with crossed-eyes, (which she doesn't display) or a large difference in the degree of near- or far-sightedness between the eyes. That is what Kayla has - the prescription for her eyes are completely different. Her right eye has basically shut down

At the end of our optometrist visit he told me that she (and her eyes/brain) are having to work that much harder just to focus and make sense of what she's reading. I started crying. For at least 3 years (that I became aware of the squinting) my girl has been struggling so much with reading and reading comprehension, and math skills, and we didn't know it. Or rather, we didn't know the why of it. We didn't know what kind of help she needed. We didn't realize there was more going on than the Intellectual Disability; that there was something else causing her struggles. We didn't know how much harder she was having to work. We didn't know how she was seeing things. We didn't know her eyes weren't working together. We didn't know this was causing fatigue. (She never complains of being tired, but her needing frequent breaks from reading and writing are a sure sign). We didn't know this was why doing homework with her was such a struggle and took forever to accomplish. (Ok some of the issues with homework were because she didn't receive modified work and was doing the exact same homework that her classmates were doing - but that's a whole other issue.).

I couldn't help but cry for all she's gone through the past few years...and all the moments of frustration I had with her wondering why she just wasn't getting it, or couldn't do something.

Since this post is long enough already, I will follow-up in another post about Convergence Insufficiency (Part II),  and our first visit with the vision therapist - and why I cried yet again - and what the vision therapy is like. (Part III).

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Meg said...

Sending you hugs! It is so hard as a mom to watch your child struggle and feel like we should have known, even when a professional (eye doctor!!!) tells us the child is fine. Know that there was no way for you to figure this out - the teachers didn't and the doctor didn't. Don't be hard on yourself. Hope the vision therapy and the glasses do the trick. Good luck

Unknown said...

I actually have amblyopia myself--my eyes do not work together well at all unless I'm wearing glasses. My left eye has a massive amount of difference in its far-sightedness than my right. If anyone else tried on my eye glasses they would be blow away by the difference!

It's actually pretty difficult to spot--it took me nearly 5 years to get the correct diagnosis and the doctor then said I probably had it for over 20 years undetected.

I do know that once I started wearing the glasses, I could see better in any kind of conditions, I wasn't getting headaches anymore, and it hasn't taken me a month to finish a book because I had to re-read everything!

I hope that the new glasses will do the trick for Kayla. I'm interested in hearing about the vision therapy too. Good luck and a big, big hug to you!

ckbrylliant said...

I feel that B was born with this. her one eye is always winking or shut, however we also have a diagnosis of strabismus which is eyes tracking out from each other therefore causing her to close one eye in order to focus with the other. This can be corrected surgically. In addition there is tosis in the winking eye but the strabismus trumps the tosis in the surgical arena at this point. Don't do the guilt or else I'll have to be guilty about B's teeth. a post on this soon.

Anonymous said...

I read where the vision therapy actually made a huge difference! like night and day. and I know you feel "guilty". BUT HANG IN THERE. I'M sure the therapy is challenging too. if you need a shoulder to cry on, you can call me and I will listen. love mom

Cindy said...

I'm sorry you're having to go through this! Chuck's eyes are the same way, his prescriptions for his contacts are completely different for each eye. Take a deep breath. I'll be praying it all works out.

Violette's Mom said...

Thank you so much for this post - Violette has been doing the squint thing on and off for quite some time now - we just got a new prescription for her glasses to see if it helps. Her right eye seems to be drifting outward slightly. We have been correcting her when we notice it and asking her to bring the other eye center - which she can do when she concentrates. I'm really going to be watching your blog for the next post! And can't wait to hear about the vision therapy!

krlr said...

Ugh - I feel your frustration! My girl had strabismus, which they had to surgically correct twice, so we're in the eye MD's office all.the.time. They kept telling us she didn't need glasses but then we suddenly have a prescription that would give ME a headache. Sometimes I wonder about these smart doctors of ours.
Good luck!

ahoy.jenni said...

Please follow up in another post - I'm not happy with Matilda's prescription glasses for far sightedness and the optometrists think they are ok, and Matilda also has problems exactly the way you described with the counting-eye-hand coordination. And she favours one eye, turning her head so she can see better...I understand the crying, I think its part relief because you have found an answer, part annoyed because you knew something was not right but no one would listen!!

Anonymous said...

I completely understand the guilt you're feeling - my son was diagnosed with convergence insufficiency in February, a month before turning 7. I had never heard about it before either and just thought he was a little lazy when it came to reading. His 1st grade and reading teachers talked to me about it and I can't tell you how grateful I am that they did. It also led to a diagnosis of SPD for fine/gross motor skills and balance/muscle coordination. I am so thankful for his teachers, but the guilt is still there (despite multiple trips to Toys R Us). :)

The guilt lessens as you see how therapy and glasses help and make things easier for them. My son doesn't do therapy, just the glasses with prisms.

Best of luck to you and your family and remember you can't know everything and it has been diagnosed so you can go forward with the best therapy for your child.