NOAH AOC

Hello, my name is Heather and I am SAHM to 3.5 year old Sam who has Ocular Albinism with Nystagmus.  Before I had Sam, I had no idea OA even existed and now I am quite familiar with it.  I am totally stressed out because the older he gets the more I see his impairment.  Poor kid cannot play Candyland without help because everything is all mixed in on the board.  I called them and could you believe the company does not have anything for a visually impaired child?  My quesitons and concerns are overwhelming at this point.  Sam is almost of school age and I am terrified to send him to Kindergarden-alone!  Sam does receive services, but I find his "teacher" useless.  Sam wears glasses that change color in the sun and is used to putting a hat over his eyes in the car when his glasses cannot transistion.  The other day a "big girl" asked Sam why his eyes move.  She was alot older then him.  I can teach him as he gets older, but right now he does not know why he is "different."  I find that I enable him way too much.  At the park I am at my worst.  Who on earth created these playgyms to all be dark brown?  I am in desperate need of someone/anyone to talk to.  I also have a 17 month old who has OA, but no Nystagmus so his vision is fine.  How do these kids grow up?  My son is so shy and visually impaired I am terrified he will get picked on at school.  Any suggestions would be wonderful!  We live in Connecticut.  Thank you so much!

 

Heather 

Welcome Heather!

My son Zachary (OCA) just turned 4 years old.  He is in his 2nd year of preschool, but he will have another year next year b/c he has a late Sept. birthday.  He had a horrible year last year and is having an excellent year this year.  His teachers, my knowledge, my persistance with issues, the IEP, Zachary's age---that is what is making the difference.  He goes all day, everyday and loves it. 

He also has nystagmus, wears glasses, has transitions glasses and has the whitest hair possible.  We get alot of stares and comments, but nothing negative--just curious.  I find the younger kids (8 years and older) do notice him and stare alot.  Sometimes I have heard them say "look mom at the boys hair".  As a former middle school teacher, I know these kids are just curious and trying to figure it out.  I often will go up and introduce them to Zach.  Then after a couple of minutes, they are saying "If you ever need a babysitter--call me".  

My Zach is very independent and self-sufficient.  He definitely has trouble seeing (board games, distance etc..), but he functions quite well.  He doesn't let me enable him AT ALL.  He has the attitude "I can do anything"--sometimes that is the problem.  I understand the need for accommodations--I make them everyday for him.  Whether it is something I have to say (describe what we are looking at) or seating somewhere different, school-related accommodations (he has quite a few) or whatever it is.  Just the other night, I was out on the basketball court helping him play b/c of his vision.  I was in my skirt and sweater with all the male coaches--but I didn't care.  Zach needed some assistance at first and I was the one for the job.

As far as K, I think about that too.  My other son is in K now and I am constantly looking around, seeing how the system works, visiting the library, meeting the principal so when it is Zach's turn, it is a easy transition.  It is never to early to prepare.  It can be a struggle to enter K, but actually the big problems start to happen around grade 2-3.  If you set a good foundation in K (or preschool), I think things are much easier.  Getting a good IEP team, understanding the IEP, meeting the teachers, understanding the system etc...

E-mail me if you would like to talk---joanna.graham@insightbb.com

Hang in there!  I am sure Sam is a happy little boy.  You are doing a great job!

Joanna

Joanna..

I love your posts. You are so down to earth with your son. I hope my Andrew will follow in the same footsteps!! When I read your post, I feel so much better about Andrew's albinism. If that makes sense? Anyway, I just wanted to acknowledge you! Thank you...

Jill

what is IEP again, that is what they go to after they are 3 right? what do they teach him there? Does he go everyday and does it cost? Is far from your house? How do they qualify for that? A question about Nystagmus, do they grow out of it. I think my baby used to have but doesn't do much now. she still crosses her eyes when she focuses on things. Did anyone's child do that? you guys are a great inspiration. Hope it works out.

Jill:  Thank you.  It means alot to hear your words.  Just 4 years ago, I was a crying mess.  It is amazing how life changes and things that seem so devastating at first actually turn out OK.  It's hard work--I don't ever deny that--but parenting is hard work.  I am proud of both my boys.  They are special in many ways.   My grandfather had albinism so maybe that is why I know things are OK--he was a great father and grandfather--and now he watches over my Zachary--so I know Zach will always be cool.

Marynmickey:  Has anyone told you about Rapid Responders?  Call Lori at the 1-800 number and she can put you in touch with an experienced parent in your area.  They can answer alot of your questions and provide great insight.  It may help with all the intitial questions that are flying through your mind right now.  We have all been there so the rapid responder parents know what they are talking about.   Call Lori--she will help you.

Joanna

Thank you so much, Joanna.  Sam is a really happy little boy and like I said has no idea he is different.  Does Zach look over his glasses?  Did Zach have the eye surgery that is supposed to shorten the nerve to make the nystagmus less "nutty" (for lack of a better word) 

I will look up rapid responders, on this page right. thanks noone told me.

As the mom of an 8 year-old daughter with albinism, let me tell you it will all be OK.  Kids are very adaptable to their situations.  Jilly has nystagmus and thinks that it is her "cool" trick.  She tells kids that she can look straight ahead but her eyes move.  It cracks me up to think what kids find "awesome". 

Jilly has 20/100 best vision and I know we are very lucky with that.  She is VERY photophobic so needs a lot of help outside.  I try very hard not to hover over her and she usually finds a way to get what she wants.  She is learning to be a self-advocate, meaning she asks others for help with things she can't see or do.  This has been a great friendship builder.  On games and such she just asks to be on someones team.  They split up the duties of game play depending on what she can do during the game.  Sometimes its just rolling the dice (after they are found for her).

As far as telling her what makes her different, we have always used the medical/correct terms with her.  We have also told her that God made her that way and must have big plans for her.  God made her stand out in a crowd so people will notice her and she should use that to show how to be kind and understanding to others.  Don't get me wrong, she doesn't always accomplish that but its a nice idea to strive toward.

The hardest thing we have stuggled with is sibling jealousy.  We also have a 12 year-old son.  He does get frustrated when EVERYONE talks to Jilly and pays special attention to her.  It is really bad on vacations when she gets picked to join in shows and such.  We try to tell him to enjoy the perks that go along with her attention.  He is getting better now that he is getting older but it can be a challenge.

 I hope this helps.  Just remember to let him be a kid and watch him for clues to what he needs help doing.  He might be able to figure things out given time.

I have noticed that too, Sally. (about the attention more towards the child w/ Albinism)    I feel like my three yr old notice's the extra attention Cash gets, at the grocery store, etc. b/c of his hair.  Most of the time though, people will acknowledge my older son too. (w/out Alb.)  by saying something about his pretty eye's etc. 

 Sam's hair is light, but not very different from anyone else.  Adam (the 17 month old) is actually a little lighter then Sam so we don't really have the whole attention thing.  I generally don't tell people that Sam has OA or Nystagmus.  No one in my Mom's Clubs really knows, I am sure they know something is going on, but have never said anything to me.  

How do I know if Sam really cannot see something a toy on the floor, for instance and I ask him to pick it up by explaining to him where it is he still insists he has no idea where it is or if he is being a normal 3.5 year old.  That is another problem I have-when is it really his vision and when is it him being lazy and a normal kid.  I try not to get frustrated with him.  Also, as the kids get older does the nystagmus lessen?   Has everyone's kids had the surgery??

 Your responses really give me hope and I would like to thank everyone! 

 

Heather,

Zachary did not have the tenotomy surgery.  I have researched it completely and I attended a conference this summer and listened to Dr. Hertle.  He is pretty much the leading force behind the tenotomy surgery.  I have decided (at this time) that surgery is not needed.  However, that is my own personal decision for my son.   As university professors (my husband and I), we want alittle more research to be done before Zach has the surgery.  In addition, Zach does not have a prominent null point, no turning in of either eye and his nystagmus is certainly present, but moderate--not severe. 

With that said, there are many people (kids and some adults) who have had the surgery with Dr. Hertle.  They can provide more information on results.  Ask Philamom or Lucy Pritzer for more information.  They certainly can tell you if it was worth it.  We visit a top PO in STL and he is against the surgery.  However, at this conference that was pretty much consistent with most of the PO's in the USA.  There is a large group of PO's that say "need more research" and there is a smaller group that says "Hey, the surgery improves visual acuity and slows nystagmus".  So, it is up to you to decide which camp you favor at this point in your child's life.  I tend to look at the statistics and numbers--that is my background.

Zachary does not look over his glasses.  However, he rarely makes direct eye contact with anyone.  This is one BIG thing we (and the school) are working on.  I do things to encourage eye contact and the teachers do the same.  Actually, the eye contact has improved, but he needs constant reminders and cues.  So, most of the time he is looking away from the person he is actually talking to.  That is not his null point.  He really does not have a null point. 

As far as finding toys.  I started very early in life (when he started walking) to describe things to him.  For example, if I wanted him to go get a toy in his room, I knew he would not be able to look and find it.  So, pretty much for EVERYTHING, I will say "Go get your toy--it is next to the chair".  He knows exactly where to go.  I am constantly saying "it is next to, behind the couch etc...".  They also use that technique in school ALOT.

It helps that I am very organized and the teacher is organized.  If things are moved, I tell him once and he remembers.  He hardly has trouble finding things once he knows where they are or is given specific directions.  Also, when I pick him up from school, he nevers "sees" me and I am maybe 10 feet in front of him.  The teacher will say--there is your mom--she is wearing blue today--and then he finds me.

For playing games (we play alot), we use the big fuzzy dice so he can count the dots.  I also help him on certain things.  He just received a monocular and his VI teacher is training him to use it.  By the time he gets to K, he will know how and when to use it.  It is a great little device.

One more note:  he has 2 "best friends" in preschool.  Apparently, one of those boys went and bought a pair of sunglasses to wear outside just so he can be like Zach.  It was quite cute.  I find other kids are very accepting.  His brother knows no different and all the older kids we know (grades K and 1) think his hair is cool.  Everyone remembers Zachary.

My kids are 17 months apart.  I do not see (or never have) any sibling rivalry b/c of the albinism.  They play nice together, fight, play nice, fight etc...  Zach used to get alot of attention, but I don't think Andrew really paid attention--he was young himself.  Now, once in awhile someone says something, but Andrew is just used to it.

Joanna

 

As far as knowing where something is, I do the same thing about telling where it is.  Like," pick up the empty chip bag off the floor.  Its in front of the TV.  See it?  It is red."  I think a lot of that type of thing comes about naturally as the kid gets older.  You know, trial and error.  We use a lot of "clues" when pointing something out.  Find something big next to something smaller that they are walking to and such.  We also use the color indicators when talking about something.  Of course there are those times you forget to point something out.  She once ran into a pole that I thought she could see in front of her.  Boy did I feel like a loser parent that day!

  It is so easy to forget sometimes that they can't see things.  Don't feel bad about getting frustrated.  That is normal too.  I don't know how many times Jilly has messed up the remote control on the TV.  My gut reaction is to say "Not again!" but then remember that she can't see the button labels like I can.  Then I think how cool it is that she can remember what button does what.

We have not had the surgery and Jilly does look over her glasses.  Half the time I don't think she even can tell if she wears them or not.  I do tell her to put them on before school though.  Whenever I ask her where her glasses are, the first thing she does is reach for her face.  Not really sure why she thinks I would ask where they are if she were wearing them but hey, who knows.

 

 

 Okay-then I am doing the right thing.  I will say things like "can you please pick up the car next to the kitchen table" to give Sam better guidence.  We also do alot of "step down" or "there are four steps coming up" and he I think appreciates it.  Sam will also say "I can see it" and I leave it be.  I don't make Sam wear his glasses, but he does.  Sometimes at home he will take them off and I let him-as he gets older I am assuming he knows what makes him see better and what does not.  Sam also always wears a hat and he holds it in the car so he can put it over his eyes if the sun comes in.  I am not sure if anyone else went through this, but as Sam got older I felt like I was going through the whole OA diagnosis again as I started to see his impairment.  

 

 I have to remind myself not to get too frustrated with Sam when he cannot find something or presses something.  It was harder for me after my second son was walking and crawling because he got into much more then Sam ever did.  Sam is a shy, nice, "old soul" kind of kid and really did not get into anything.  I think it may be a combination of his personality as well as his being visually impaired.  

 I  am a part of two moms groups and just wish I had someone to kind of talk to.  I really appreciate everyone's imput.  Thank you so much.  

 Hi, Joanna!  I have seen Sam ask his friend for help and I just sit and watch.  I thought it was really cute and wanted to cry (I am 36 weeks preggo with a third so everything makes me cry!)  His friend grabed his hand and helped him.  There was this other kid and we were at his house for a playdate and Sam had a toy in his hand and the kid put his foot out and Sam tripped.  I just cannot let that go.  THe mom punished the little terror, but still.  She has no idea that Sam is impaired (I am sure she knows something, but never said a word to me) and I was so sensitive to what this kid did that I have stayed away.  

I am very organized as well as a creature of habit.  Sam has freaked out because he could not see me (I am never far away, just maybe standing behind him) and will freak out before actually looking.  

Fuzzy dice sounds like a great idea!  Where can you buy them?   

Sam's nystagmus is moderate, but his right eye does turn in.  His PO sees him every 5-6 months to make sure he still uses his right eye.   I am really up in the air with the surgery.  I know people that had the surgery, but have not heard of anyone not having it.  I wanted to wait for Sam to be old enough to make his own decision since it is his eyes and his body, but the PO said recovery will be rougher when he is older.  I really have to look into this.  Thank you so much.  I feel like a ton of bricks has been lifted that I can finally talk to people in the same situation!

Hi--As an adult/mom/grandma WITH albinism, I wish to compliment those of you who have figured out the giving vwery specific directions and clues tactic for locating things!!  It is porbably the best method of helping locate things and it also reinforces colors, directions, size opposites and the like with small children.  As they get older you can throw in left and right, east--west type directions, concepts like eye level, and of course the face of a clock--your cup of juice is at one oclock.  Sometimes I am at a loss to  locate something and I just stand there until my daughters remember that I need more specific directions.  Although in my house, I am usually the one finding things!!  At work, some of the people I work closest with actually give me very good directions when I am searching for something in a stockroom, and most peope are amazed when I can give them instructions from the other side of the store as to exactly where to locate something--second aisle to the right, halfway along shelf above eye level, blue box--things like that!  The very worst thing you cn do is POINT and say it is OVER THERE--like my third grade gym teacher in a poorly lit gym.  Where is over there???

 Some not finding or picking things up may be due to age and personality, also.  I know it must be hard to not pin everything you see in your child, good or bad, on the albinism.  Try and remember albinism with the resulting vision issues is just one small part of your child. He or she will have a personality uniquesly his oor her own which will dominate evrything about him or her--how he or she is affected by any issues brought about by the albinism, how social or shy they are, whether they are a chatter box, whether they prefer to play quietly and what they like to play, whether they liike sports (that isn't necessarily dictated by low vision!) and the list goes on.

Eye surgery--well there ARE many people on these boards who have never had any kind of surgbery.  I will not voice my opinions for or against the surgery for nystagmus and null point correction.  I know there are two schools of thought.  My understanding is that the surgery is more indicated if there is a severe null point issue--severe head tilt, etc.  There is also strabismus surgery, which is done on many, many children with and without albinism.  You need to find a Dr. you are comfortable with and who;s opinion you trust and go with that.  What is right for one child is not for the next.  Not all of them need glasses, not all of them need transition lenses, not all are candidates for surgery.  While I have nystagmus, and once in awhile my right eye turns out a little, my null point isn't too far off, I will tilt my head back and look thorough the bottom of my contacts when I am really having trouble focusing on something.  Not real far back, just enough that a couple of times when I was in high school I was accused of sticking my nose in the air!!  Oh well...

Keep asking questions,,,,,,, it is the best way to learn!

Joni