V is for Vision

One of the many medical issues that can affect individuals with Down syndrome is vision. This does not mean all people with Down syndrome will have problems with vision, but it is something to keep on top of as there is a higher incidence of vision-related issues for people with Down syndrome.

Kayla started wearing glasses (far-sighted) a couple of years ago and she was also diagnosed with Amblyopia and Convergence Insufficiency. You can read about the process that took and the ensuing vision therapy here, and here.

She's been discharged from vision therapy. There is only so much therapy you can do and they felt like she plateaued and didn't recommend her continuing the therapy.

I wish I could say that I noticed huge, major improvements with her reading after this therapy, but I haven't. Not to say that it hasn't helped. They of course did their assessments throughout the time she was receiving vision therapy and according to their assessments she showed much improvement on all the testing that they did.

I always read testimonials on various products or therapies where the parents are amazed at the differences, the changes, the improvements they saw in their child and how much better they were doing on whatever it was they were working on. I've never been able to see anything so straightforward like that with Kayla.

She went on a gluten-free diet and I didn't notice any change in her behavior.

She had her tonsils and adenoids out and I didn't notice any change in her attention span.

I'm trying Vayarin but haven't noticed a drastic change. I've asked one of her teachers about her attention and focus - although this is Kayla's first year there so she wouldn't have anything to compare it to she did say that it isn't hard to get her attention back to where it needs to be and it hasn't hindered her learning - so maybe it is helping her at school. I'm just not seeing it at home.

I meant to take a video showing how Kayla was reading before she got glasses and started vision therapy so I could compare it to how she reads after completing therapy, but I forgot. There is some improvement in reading, but that could also be due to the fact that it is 2 yrs later!

I'm still glad we went through with vision therapy; it might not have made the drastic changes I had hoped to see, but I think it did help her eyes start working better together.

For more information on vision research, read Down Syndrome Education's Vision in Children With Down Syndrome: A Research Update.

What I found particularly interesting was the section on focusing at near and that even if a child is wearing glasses to correct vision they may still have a lot of trouble focusing on near work which can make school work difficult. In a controlled study bifocals were shown to improve focusing at near. Kayla still has a lot of difficulty with handwriting and it isn't a task she likes to do; she also seems to tire after only a few minutes of writing. If she doesn't have a clearly defined space her letters and words are all over the place. I think I will talk to her optometrist about the possibility of bifocals to see if that will help improve near work for her.

Grab This Button

   

Not A Role Model Mom

Throughout Kayla's eleven years I've often had people remark to me with some variation of the following expressions:

"She is doing so well, you must work with her so much at home."
"She's doing great, it must be what you're doing at home."
"It really shows that you work a lot with her."
"So much of what she's doing is because of what you do at home."
"It's obvious you do a lot with her."

As I'm wondering what their definition of doing 'so well' means, and what ideas/expectations they had of what they expect someone with Down syndrome to be doing, or not doing, I smile, through gritted teeth, and swallow the guilt bubbling up inside of me. I feel like an imposter accepting these accolades.

The truth is: I'm not "doing" that much with her at home. The truth is: I am not a role model parent to look to when it comes to raising a child with a disability. The truth is: There is so much I could be doing better with her. The truth is: I haven't done anything above and beyond.

I don't have much confidence in myself as a parent, much less trying to be a teacher and therapist too. So I don't teach (often, or that well), and I don't stay on top of therapies as often as I should. Instead, I just try to stay afloat with this parenting gig.

I have always found it not so easy to try and "do things" with Kayla - you know, those educational things to keep her on track and progressing. Even when she was a toddler I often became flustered and I guess gave up easily. I don't make up flash cards or turn everything in to an educational game. I don't stay consistent with reviewing math facts.

I became overwhelmed at all the products aimed at kids with disabilities. Not only was it overwhelming, but it can be expensive. I looked at numerous reading programs but always balked at the prices and thought I could just recreate my own at home; except I never got around to doing that.

At our first NDSC Convention in Boston we bought a DVD of school readiness activity type things, but that meant we would have to print off all the pages. And there are a lot of pages. Pages and pages and pages. Joe printed off several of these units but at the time they were still a little advanced for Kayla. Then he deployed and they got packed up to storage. By the time we got them out of storage and thought about them again she was beyond those skills.

I bought the Numicon set, but I think I must've bought a very basic set (expenses you know!) because I don't have any big handbook of activities or how to really use it successfully. I have a small fold out activity booklet, but I know there is more to it than that. So it sits, hardly being used.

Once Kayla started school it became even more difficult to "do things" with her at home. When she comes home from school she is done. Throw in after school activities and therapies and time is even more limited.

At one point Kayla was going to vision and speech therapy 2x a week each after school. Girl Scouts 2x a month, Drama Club 1x a week after school, and Running Club 1x a week after school (although not the whole year).

We are supposed to do 'home exercises' from speech and vision therapy activities. In theory this shouldn't take long. We can squeeze in 10-15 for each therapy several times a week, right? Not so much.

After school she wants to unwind. I get that. She needs time to let her mind be free of all that learning. She wants to be upstairs or outside playing. And I let her; I let her play. But it is not easy to reign her back in and tell her she has to stop playing so we can do x,y,z. And then if we get one thing done I have to let her take a break and then go through the process of reigning her back in again. Outside for 30 min, inside to work on things, back outside for another 30 min? It simply doesn't work that well.

There are speech and vision activities, reading every day, general reviewing of information from science/social studies, study for quizzes/tests, attempting to do math, practicing handwriting. It feels like a constant, "Kayla do this, do that, we've got to study this, let's work on that, sit down and do this."

It seems like there should be enough time to do a little bit here or there, but it never works out that way. 15 min of vision exercises can turn in to 30 min after counting the time it takes to convince her to do it and go sit at the table, after all the breaks in between for being distracted, for fidgeting, for getting some water, for going to the bathroom. That's the same for anything structured we try and do. The process takes so much longer than it should.

If I feel overwhelmed and stressed at the constant "let's do this and this and this and work on this and this and this" how must she feel as the one being told to do all that?

Sometimes I feel like she must think that's all she hears. "Corrections to her speech and tongue placement. Time to read a book. Let's do Xtra Math on the computer. Let's review notes from science and social studies. Count by 10s. By 1s. By 5s. Let's do the multiplication game where you get the guy to climb the mountain. Read your phrase book. Work on your speech exercises. Get out your vision therapy glasses and let's do the number chart. You should practice writing some words." and on and on and on it goes.

She just wants to be a kid. She just wants to play. She just wants to be free to do what she wants to do.

And most of the time I let all the other stuff go and let her be a kid. Most of the time she plays outside longer than I intended because it's a nice day and the other kids are out and I don't want to call her inside to do more work or therapy.

So no, I don't do much with her at home. I don't drill her. I don't make flash cards. I don't make up games to work on skills. I try to introduce things, but am usually met with resistance and I don't want everything to be a fight.

We do what we can every night, but I know there's a lot I'm not doing. I wonder how much "better" she could be doing if I were more consistent. It I were a better teacher and therapist. If I just knew how to do things with her.

But I want her to enjoy her childhood, too.

 

Vision Therapy, Part III

Following up from my posts about a New Diagnosis and Convergence Insufficiency...

Our initial consultation with the vision therapist was interesting and eye-opening. It convinced me that CI really has been affecting Kayla.

She did several types of tests with Kayla. In one of them she had a peg-type board with small pegs. The therapist had 7 pegs and gave Kayla 7 pegs. The therapist made a simple design on her board and Kayla was supposed to copy it. She just couldn't. No matter how much instruction she gave Kayla, Kayla just didn't seem able to copy the pattern. The therapist did another design with only 3 pegs and Kayla had trouble with that one, too.

Although I suspect that maybe Kayla was frustrated with not being able to complete the task the first time with the 7 pegs since she didn't seem to really be making an effort with the 3 pegs. She did a lot of avoidance tactics or using more pegs than she was supposed to. She seemed to be purposefully not doing what I think she could have done.

The therapist explained to me how CI can make it harder to copy simple patterns (but of course I don't remember how she explained it, so I can't explain it myself!)

Another test she did was have Kayla stand in front of her and she held up a bell attached to a string. One of Kayla's eyes was patched. She told Kayla to follow the bell. Kayla did. With her whole head. When she moved the bell to the side or up or down, Kayla's whole head moved along to follow it. When she finished she switched the patch to the other eye and I asked, "Is she supposed to be moving her head like that?" The therapist told me, "Shhh." Ha! I guess she wasn't supposed to give Kayla the instruction to keep her head still and only follow with her eyes; it was to see what she would naturally do. (Although given the instruction I think Kayla would have kept her head still, at least more so than what she did without being told.)

While standing there Kayla reached her hand out to rest it on the table to her right side. The therapist took her hand off and told Kayla she didn't need to hold up the table. Then a few seconds later Kayla reached out with her left hand to put it on the desk on her left side. Again the therapist didn't want her leaning, or resting, her hand on something. She just wanted Kayla to stand up straight with hands at her side. I didn't realize this might mean something until later.

The therapist gave Kayla a pair of prism glasses to wear while she threw a tennis ball to her. Well, she sort of threw the ball to her. This ball is attached to a string that hangs from the ceiling. She threw the ball to Kayla from the front and then swung it around so it would come to Kayla from the left and right sides.

Kayla caught the ball, I think about 99% of the time. And she probably did this about 10x. She caught the ball with intent and accuracy, her timing was spot-on, she caught it between her hands away from her body instead of cradling the ball and bringing it in to her chest.

I cried. I sat there and watched my daughter catch this ball over and over and over again ... and I cried. I have never seen Kayla catch a ball like that before. Not to say that she can't catch a ball. She can. Just not like she was doing in the office. She doesn't usually catch with much finesse, her timing is a beat off, and it seems more like luck when she does catch the ball. She fumbles it with her hands all over the ball and brings it in to her body to maintain the catch.

I can not describe the fluidity and accuracy of how she was catching this ball. Maybe it was the way this ball was attached with a string instead of a typical free-flowing ball, I don't know. All I know is I've never seen her catch like that before.

The therapist explained that sometimes kids with CI are either centrally-focused or peripherally-focused. If you're centrally-focused then you don't see things peripherally and the peripheral prism glasses can open up the world to you. She said centrally-focused kids don't know where their body is in space and so they are very touchy ... needing to touch everything to ground themselves in space (flash back to when Kayla was in the smaller office and automatically reached out to touch the table when she was just standing there following the bell.) Centrally-focused kids also are easily distracted. Because they don't have that peripheral vision they have to look up and move their head around with any little thing that comes in their field of vision, or hear something, because they can't see it peripherally (that sounds like Kayla too.)

If only it were that easy to say Kayla was centrally-focused and needed this type of prism lenses. But no, that doesn't appear to be the answer to any of her issues! I thought for sure it would be after seeing the way Kayla caught the ball with the glasses on.

There is no specific test to determine if a child is centrally- or peripherally-focused. It's based on the therapists' observation of each child as they are wearing each type of prism lenses. Most kids, if they are one or the other, will 'calm down' significantly while wearing these glasses. They will be better able to focus. After Kayla had several therapy visits trying each of these glasses they didn't notice that either kind made much of a difference for her. She still might be one or the other (and I'm venturing to guess central seems to fit her) but having peripheral lenses didn't make it any easier for her to focus. I was so hoping that would be the magical answer to calming her down so she wasn't so easily distracted and could focus better. (Last year she was diagnosed with ADHD but we've been very hesitant to try any medications for now.)

The therapists have seen some improvement in what she's been able to do in therapy that she wasn't able to do when she first started in regards to eye tracking; so here's to hoping that this is all working ... and that reading and other skills will start to be easier for her.

Now to order her some glasses for the far-sightedness! Then comes the fun of getting her to wear them all the time and not lose them!

 

Convergence Insufficiency (Part II)

I was looking for answers to what was causing some of Kayla's issues, but when the optometrist said that glasses would make things clearer for her, but would not help her eyes work together and that the recommendation for vision therapy was two times a week in their office with home exercises, I admit I balked.

I immediately felt a bit stressed about the thought of going back and forth to this office, 30 minutes away, 2 times a week. I wanted the answer to be simple -that all she needed was glasses and that her other issues could be attributed to Down syndrome and the accompanying Intellectual Disability (ID).

I was slightly leery. How could they accurately test her for Convergence Insufficiency if she has an ID? What if she simply didn't understand what was being asked of her during those tests they were doing? I mentioned that to the doctor, but he said they did several eye tracking and teeming tests and her eyes were just not doing what they should be doing. One example was taking a pen and telling Kayla to keep her eyes on the pen and follow it all the way to her nose. Most people can force their eyes to stay on the object until it touches their nose. When the pen reached a certain space from Kayla's nose her eyes drifted away; several times. (I did this at home with my finger to both Lucas and Kayla and saw a noticeable difference. Lucas could keep his eyes on my finger all the way until it touched his nose; Kayla could not.)

We made an appointment to follow up with the vision therapist and I went home and did some research. I was still leery about the recommended 2x a week in-office vision therapy. And I wanted to read more success stories than was posted on their own website. I was also balking because this type of therapy is considered alternative and of course not covered by most insurances (including our own). It's recommended to start out at 12 weeks and then re-evaluate, but predictions are that Kayla will probably need this for at least a year. Knowing that insurance wouldn't cover this made me wonder how effective this treatment was and if it was 'worth it.'

But when I read the symptoms and the issues of CI it was like a light bulb going off.  A lot of what I read described Kayla.

She can read, but she doesn't read with fluency. She pauses a lot when she is reading. She stops to look around the page before even finishing a full sentence. I'm constantly tapping the page and telling her to continue on with reading the next word. It has been painful reading with her because of how absolutely long it takes to get through what should be a simple book. She skips easy words; she mixes up words like "a" and "the" and other small words that I know she knows. So she struggles with reading comprehension because by the time she finishes reading something, because of how long it takes, she doesn't remember or retain what she's even just read. She squints her eye. She tilts her head.

Her handwriting hasn't improved much over the last couple of years. When she writes a word she doesn't keep the letters all the same size and spacing together to make it a word. If there is no defined space the letters are spaced widely apart.

Here are some symptoms of CI: The bold ones are what we notice with Kayla, she might have the other issues such as blurred, double vision, headaches, but we don't know because she doesn't tell us ... or know any different to tell us what she is seeing.

• eyestrain (especially with or after reading) (She probably has this and that is why she pauses so much during her reading; to give her eyes a break)
• headaches
• blurred vision
• double vision
• inability to concentrate
• short attention span
• frequent loss of place
• squinting, rubbing, closing or covering an eye
• sleepiness during the activity
• trouble remembering what was read
• words appear to move, jump, swim or float
• problems with motion sickness and/or vertigo

"It is not unusual for a person with convergence insufficiency to cover or close one eye while reading to relieve the blurring or double vision. Many people who would test as having convergence insufficiency may not complain of double vision or the other symptoms listed above because vision in one eye has shut down. In other words, even though both eyes are open and are healthy and capable of sight, the person's brain ignores one eye to avoid double vision. This is a neurologically active process called suppression."

I read about treatment for CI here and here. "Pencil push-ups" used to be the most common treatment, but scientific research doesn't support this and studies have not shown it to be effective.

Mayo Clinic researchers were part of a nine-site study involving 221 children to try and determine the best treatment method. There were 4 controlled groups:
- Office-based therapy w/a trained vision therapist and in-home reinforcement
- Home-based pencil push-up therapy
- Home-based computer vision therapy with pencil push-ups
- Office-based placebo therapy

After 12 weeks the study showed that approximately 75% of the children in the office-based therapy with in-home reinforcement experienced either full correction of their vision or saw marked improvements compared to about 40% for the 2 home-based therapy groups.

That was enough for me to at least give this a try and see if there are improvements with Kayla's vision.

Next I went looking for parent testimonials. While it was helpful to read all the success stories of struggling in school and these kids now making As and Bs, and being at the top, or near top, of their class etc ... I knew that kind of success wouldn't apply to Kayla because she has an ID.

I knew that helping her with the CI will not all of a sudden give her average intelligence, or make school work easier for her ... it won't be a magical fix that will have her working on grade-level with her same age peers.

I wondered if there were any success stories about kids who had a prior diagnosed intellectual disability. I did find Success With Learning Disabilities: Special Education Programs and Vision Therapy. A quick stroll through the stories seem like a lot of those students were in Sped Programs due to reading problems; I haven't read enough yet to see if any of the stories contain students who also have an ID.

I know Kayla will still have hurdles in school to overcome because of having an ID, but I'm hoping this new diagnosis and treatment will hopefully help things not be as difficult for her.

Part III - Starting vision therapy, prism lenses, and learning about centrally- or peripherally-focused vision.

 

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).