Reading has always been my greatest concern and a question I have asked each family I've encountered. Until a few months ago, Makenna was the baby of the group of people I knew with HGPPS...so I was asking questions of older children. Makenna's website has gotten me in contact with several families with HGPPS. I think I need to come up with a questionairre and send to all.... compile the data and share with everyone. It seems like the best way to share everyone's facts if not everyone's story.
Makenna doesn't read yet (she's four), but she can identify numbers and letters in sequence and can write her name, her sisters name, etc... with no problem. She does invert and mirror her letters sometimes, but nothing that isn't age appropriate. Others with older children have reported different things...some that they needed assistance reading, or it took them longer to read and therefore needed adjustements with timed testing in school. While these all make sense to me, I don't feel this will be the case with Makenna. I think we got Makenna's diagnosis early enough to be able to proactively provide her with the tools she will need. I am a firm believer in not handicapping my children where they don't need it. I have talked in great detail with all kinds of vision specialist to try to gain insight on what Makenna might need. But I won't provide it unless it seems she does indeed need it. I spoke with a specialist at the local school for the blind ( I know, it sounds crazy) and she gave me great suggestions for things that might help Makenna if I am noticing her having problems as she develops.
A. A slantboard. Your head is really heavy. If you look down at a piece of paper it is harder to control your head. You have more muscular control over the position of your head if you are looking straight ahead. A slantboard would put a book or paper straight ahead as opposed to on the table.
B. A line marker. Simple. Any child with HGPPS will ultimately have to move their head to read. In speaking with her I learned a very important terminology difference. I always just said Makenna couldn't track with her eyes. While this is true, she also cannot trace with her eyes. Tracking is when your eyes follow a moving object; tracing is when your eyes follow a stationary object. When you read, your eyes are tracing. Since she won't be able to trace the line with her eyes, she will need to move her head. In order to help reduce the risk that she looses her place, a line marker may be needed.
C. A tracking game. I haven't done this with Makenna in a while but it was something the woman suggested. Makenna did it quite easily, so I stopped doing it after awhile. Draw a line on a piece of paper, a jagged moving line (not straight). Take a little toy - anything... a "little people" or a small plastic animal, anything will do. The parent takes the toy and has it "walk" on the line. The child's job is to watch the toy. Every now and then have the toy "fall off" the line. The child is supposed to tell you when that happens. You shouldn't just have the child hold the toy and guide it one the line because that involves more senses. Have their only sense be visual tracking.
It's funny, because when we first got the diagnosis I racked my brain for the limitation Makenna might have.... and I came up with two things (scoliosis excluded):
She will move her head side to side as she reads. People might not even notice. Except for some really mean kid at school. I can deal with that.
She will never pass a field sobriety test - follow my finger.... hahaha... she just better never find herself in the situation :) Not sure there's a card to carry to get yourself out of that one!
The only other thing we have noticed about Makenna's vision is that she needs to put her head close to something to really see it. I can't tell if it's just annoying 4 year old behavior or if it's really necessary, but it does exist :) If I am reading a book to her, she will often put her head in between my face and the book to see the print or the picture. She does have excellent visual acuity. We often do look and finds or hidden pictures and she is very good at both.
Makenna currently is in a Montessori school and will go to Kindergarten next year. I have been very candid with her teachers regarding her condition. It's hard because part of what I have to tell them is.... "We just don't know exactly what to expect, so keep your eyes open and let me know your thoughts and feedback". There isn't a lot of functional data or statistics on kids with HGPPS. Maybe that's the gap a survey can fill...
This whole thing has been fairly difficult for me, but I always fall back on the advice of a friend ~ "There is a gift in there somewhere". I feel strongly that the gift is sharing Makenna's story and reaching out to others that face the diagnosis.