Well, It's official :(

K recently had an assessment at school with the CNIB.  She is now considered to be a student with low vision & while I'm not surprised, I was really hoping her sight wasn't this bad  :(

The evaluation was very helpful though & there were some positive aspects too. Although it was done through the school I was able to be present for the entire evaluation which was great because I was able to ask many question about activities such as skiing that don't really pertain to school.

I have known for a long time that K prefers very large print. I also know that she has the ability to read fairly small print because she will happily & willingly do so in very small amounts. However she refuses to read tiny print for any length of time. K's reading progress seemed to really slow down after she mastered level 2 readers. Both her opthamologist & optometrist warned me that "eventually" her vision may affect her reading ability but they made it seem so far off in the future that it took me close to a year to figure it out.  We started photocopying & enlarging short, 100 page or less chapter books & her reading started to progress again. While I now know that K greatly prefers reading large print during the testing it was obvious that, up close, she has the ability read really, really, tiny print! YAY!!!

Unfortunately, although she can read small print up close, her ability to see well decreases very quickly at even short distances.  At one meter her vision is 20/160.  This explains why when the teacher is using the smart board at school & all the kids sit on the rug watching K prefers to stand right in front of the computer & watch on it instead.

We had been looking into whether or not to get K some reading glasses.  The opthamologist gave her a prescription for reading glasses but was uncertain as to whether or not they would help.  We discussed this during the eval & came to the conclusion that K is using her glasses like bifocals anyways & this is probably more beneficial than a separate pair of glasses anyways.  K always uses her glasses when looking at things at a distance & then when looking up close she looks over them. This makes the print look larger & allows her to see it more easily.  It always amazes as to how smart kids are at finding their own solutions to things! So no reading glasses it is & K will continue to use her glasses according to her needs.

I was concerned about K's depth perception.  She is currently in level one in her Nancy Greene Learn to Ski program.  She has all of the skills needed to pass her current level & can do everything the other kids do except she skis more slowly. She is just not willing to go any faster. Because K has AAI we have always taught her to ski very carefully & only allowed her to progress to more difficult runs after she showed us that she skied completely in control. Some of her reasons for skiing slowly may be just that we taught to be so careful. It could also be that with 20/160 vision she needs to go slowly to see where she is going however I was also concerned with her depth perception.  Thankfully the testing showed that it is good - I only scored very slightly better myself & I'm sure I was much more interested in that test than she was!

They had another test which involved a story, in very large print thankfully, that got lighter in colour with each sentence. Even at the very end when the text was such a light grey that it really blended with the white paper she was able to continue to read the story! I'm so glad as this was another concern that I had with her skiing as we ski at night about once a week.  I'm still a bit in the dark as to why K skis more slowly than her buddies but at least we've ruled out my bigger concerns. The  most important thing is that she skis well, is careful, & uses good judgement especially when negotiating different terrains or features such as tabletops or jumps.

The evaluator had a few tips for the teachers although in kindergarten they mainly use very large print anyways.  The bigger help will be for K's reading at home because they are surplussing a machine (I've been on holidays for the last 2 weeks & forget the name of it) that allows me to enlarge any book for K so this will be a great help for her chapter books as well as for the New Practice Reader books that she uses for her neurodevelopmental program as the print is also getting smaller in these as she progresses through the levels. It will stay at home for her to use here.

K's nystagmus is likely the cause of most of her visions issues.  Andi talks about it in her blogpost.

We are doing various exercises for K's eyes as part of her neurodevelopmental program & while we've seen improvements but I'm still hoping to improve her vision so she is able to get her driver's license when she is older. 

While this evaluation didn't answer all of my questions I am happy that I have a better grasp on K's vision issues & I'm excited to try out her chapter books in enlarged print!

31 for 21 - Glasses

K has worn glasses for astigmatism & nearsightedness, since she was 9 months old.  She also has nystagmus, although it seems to be getting better as she gets older.

The first day that K wore her glasses, it was really neat to see her looking around intently.  It was obvious, even at 9 months, that she could tell the difference with them on. 

Because every child is different, you may need to experiment a little, but here are some things that helped with  getting K to wear her glasses. 

 I found that she would not tolerate any sort of strap or band to hold her glasses on.  She also did not do well with cable temples. It seemed like if there was anything extra attached to her glasses, it would be just one more reason for her to rip them off. They were also more likely to catch on things with the straps, & of course if they caught on anything she would rip them off. This may work for some babies but if your little one is like mine than keep this in mind. K did much better with  no strap.

The other thing that made a huge difference was an accurate prescription.  Her first opthomologist was very conservative & would not give her a strong enough prescription.  Her new opthomologist strengthened her prescription quite a bit & from that day on she has been great about wearing them.

If your child is old enough to put their own glasses on, let them. Sometimes giving them ownership over putting them on can help.

I'm going to add my friend Laura's suggestion her too:  Her gorgeous little girl got glasses recently & she mentioned that she was going to get a cheap pair of glasses for her husband & herself to wear too.  It would also work great to do this with sibling too.  You could just get a dollar store pair of sunglasses & pop the lenses out.  Most of our family wears glasses anyways, but if yours doesn't, I think this is a great idea.

In hindsight, I also should have been more insistent with K on what she must do with her glasses if she takes them off.  I was so focused on "You need to wear your glasses".  Now that she wears them so well, if she does take them off, I am not expecting it & may not notice right away.  We have lost her glasses for a few days sometimes lately because we don't know where to look, & she can't always remember where they are.  One time, she put them in a little compartment on a toy dog kennel!  Luckily, our 8 year old found them because I would never have looked there!  We have been working on  having her put them on the table or a counter & are getting quite successful now.


Make sure you have your child's glasses adjusted as often as necessary.  The better they fit, the more comfortable they will be (& even less painful) & the more likely it is that they will be worn.  When she was little, if K's glasses did  not fit well, she would rip them off & throw them.  And those little straps that are supposed to keep them on?  They helped her glasses stay on about .02 seconds longer than without a strap.  Not only were they not effective, but they irritated her more so she tried to pull them off more often.

Pick a brand that fits.  We have had great luck with Specs4Us

This is the newest pair of Specs4Us that we ordered for K.

I have heard some people say that they had good luck with Miraflex, but I've never tried them. I've been hearing good things about Tomato Active glasses lately too.



Why I luv Specs4Us - a picture says a thousand words!

K has worn glasses since she was 9 months old.  We had a very difficult time even finding a pair of glasses to fit a tiny 9 month old.   Her first pair were a terrible fit, but fortunately, we found out about what was at the time, a brand new company called  Specs4Us. They make glasses designed specifically for kids with Down syndrome.  I think the thing that I enjoy the most about this company is the incredible customer service. This company has always gone above and beyond the level of customer service that I have come to expect.  The first time we ordered glasses, they even sent me a few pair to try on to be sure that the fit was correct.   My daughter's glasses got broken last year after a horrific accident that I'm sure no pair of glasses could survive !  It was on Valentine's day, which was a Sunday.  I sent of an email to the owner, Maria Dellapina, certain that I was not going to receive a reply at least until Monday morning.  Within the hour, on a Sunday, I had a reply!  Now that's customer service!

The other thing I really appreciate about Specs4Us is their durability.  The bottom pair in the picture below is from about 10 months ago - my daughter isn't always easy on her glasses!  She is getting better thanks to a change in opthamologists & a more appropriate prescription, but that's a whole other story! If I remember right, this picture was from the time that K's glasses got run over by a large 4X4 truck. I really didn't expect them to be saved, but, after warning me that they likely wouldn't survive, the optometrist was able to bend them back into shape without them breaking.  We are still using these glasses. They have been bent back from similar shapes to this about ten times, but they are still going strong! I have never seen a pair of glasses as mangled as hers have been several times, that have been brought back to life!  

check out the bottom pair -10 months ago........

and tonight - still as good as new!

Here is a link to Maria Dellapina's Specs4Us site if you are interested:

http://specs4us.com/