N is for NYSTAGMUS and kids with different NEEDS

N is for Nystagmus and kids with different Needs

"Ny....WHAT?", you're probably asking.  Nystagmus is characterized by an involuntary movement of the eyes, which may reduce vision or be associated with other, more serious, conditions that limit vision. Nystagmus may be one of several infantile types or may be acquired later in life.

So why devote the letter "N" to this visual/neurological condition?  My soon-to-be 8 year-old son was born with a hereditary form of horizontal Congenital Nystagmus, related to ocular albinism.   He sees 20/80 in each eye with his glasses,and 20/70 binocular. His eyes are in a relatively constant side-to-side motion, and when he's very tired or working hard to focus, his head often moves along with his eyes. He receives accommodations at school, and at home he self-regulates his visual access.

So what does my son's visual condition have to do with being an elementary parent? Here's what I've noticed: kids with different needs, be they sensory, mobility, academic, or emotional generally don't spend much time noticing the differences between themselves and other kids when they're very young.  Fast forward a few years into elementary school, and they start to see that they don't do things the same way the majority of their peers do them.  This often kicks off a very tricky emotional stage in their lives.

Until the past 6 months or so, my son didn't seem to notice any differences between his visual capabilities and his peers.  It seemed to come up all of a sudden (which means it had probably been swirling around in his head for awhile), and he's become very sensitive about things that are noticeably tougher for him than for other kids.

This (7 or 8 years old) seems to be the age when kids really start to take off with their chosen interests.  In our case, I see the difference at soccer.  Many kids are really "clicking" with it, and the game moves at a much faster pace. My guy's vision has a really hard time keeping up with that.  So what do we do?  Well, we discuss with him what he'd like moving forward.  It's important to determine whether he's upset because he wants to do better at that sport, or whether he's having a hard time processing that he's living with something that other kids aren't.  I think in our case it's a little of both.

So what do you do with a kiddo who's just figuring out that he's (I'm going to use the male pronoun for the sake of brevity) got some different needs?

1. Teach him to advocate for himself.  He needs to know himself (and his abilities) well enough to determine how he functions best.  He needs to know how to put this into words, and feel comfortable sharing this with others.  My son had a mini-meltdown at school last week when a teacher (not his usual instructor) positioned words on the board at an angle that made them difficult for him to see (this is common for folks with Nystagmus- often it isn't the nearness of the object that makes it easier to see- it's frequently the angle at which its placed).  My son started to cry from frustration, and this didn't help the situation. We talked about it later, and he now realizes that people want to help him and that it's his job to show them the best way to do that.
2. Ask him what it is he'd really like to do.  My son has decided that soccer might not be something he wants to pursue as his athletic interest in the future.  He's not completely sure, so we're still working on ways to modify the experience for him to allow him maximum potential for success.  He's decided to let the coach know he does not want to be goalie (thank goodness for that!), and we're using the brightest ball we could find.
3. Try to as closely as possible to duplicate the child's area of need for yourself, so that you can get even a small inkling of what it's like to live with that condition.  I can't believe it took me so long to do this.  My son has been at the ophthalmologist twice a year or more since he was three months old.  At our appointment a couple of weeks ago, I asked the doctor to try and duplicate my son's vision by using lenses to distort mine to the level that he sees WITH his glasses.  The doctor did so, and I nearly cried.  I could not make out my son's facial features from 10 feet  away.  The doctor said, "You have the advantage of seeing this with a steady gaze.  His nystagmus makes it even more difficult.  He only sees this well when his head is in his null position (the position where the eye motion is damped the most)."   This simple exercise made me realize how difficult it has been for him to play soccer, play t-ball (that was only one season, thank goodness!), play the Wii, and even to find my husband and I on the sidelines.  This got me brainstorming about what he can do well, and how to apply those skills to an interest area.   He's currently trying fencing!
4. Come up with strategies that work on and off the field. As I mentioned above, my guy has really started to get nervous in crowds, because he can't pick me out of a crowd easily.  I wear the uniform of my early 40's demographic- black yoga pants and a black fleece jacket.  He and I discussed a way to make me more visible to him- I now wear a bright scarf when we go out.  I'm still working on a strategy for the pool club this summer- I'm sure as heck not wearing a neon bikini ;-)!
5. Focus on his strengths. We're trying fencing because my son is quick on his feet, and he's motivated.  He sees well up close, and in fencing, the rules require players to stay fairly close to each other and engaged.  Plus, the mask obstructs vision a bit- something my child is used to, but throws the opponent a bit- in this case, his comfort level with crummy vision is a bit of an advantage ;-)! 
6. Understand that as much as you want to, you can't fix everything. This is a journey that your child is on.  You can do whatever is in your power to be understanding and to try to make things a bit easier; but ultimately your child has to make his own way.  If we don't give kids the vote of confidence to try things on their own, they won't ever know how- and then they'll never know the inner strength that comes with this process.

No matter what your child's area of need might be, expect a bumpy patch early in elementary school.  Your child might just be catching on to the fact that he or she has a different way of doing things than his/her peers.  There are all sorts of ebbs and flows in childhood, and this stage is a little dicey when needs are different. Help your child to find his/her equilibrium now so that he/she emerges from this stage knowledgeable about his/her needs and confident in advocating for what they need to find success.  This will lay the foundation for the next gargantuan bump in the developmental road...ADOLESCENCE- YIKES! :-)

For more information on Nystagmus, click here.