Caitlyns Story

This is a reply to a posting I made on the Yahoo Group mentioned before. It is from another parent who's child is affected by Microphthalmia

Hello Rohan-
Welcome, welcome to our group. I checked out Caitlyn's website. She is really adorable. I have read the advice posts so far and you are getting some great advice. My son age 3 was born with bilat microphthalmia, micro- genitalia, and delveloped microcephaly in the first 6 months, and recieve sgrowth hormone injections daily. It has been a bumpy, challenging, yet joyous road. Jake has defyed many, many odds considering that the syndromes they have tested him for, most of the kids don't walk or talk. But he is talking up a storm and climbing trees and ice-skating. He has a small amount of useable vision in one eye, and wears a prothesis on the other where he has no vision. He is legally blind.

When he was a baby we did infant massage, and I told him which body part I was working on to help him learn left from right. I dragged him around the house on a blanket ride and told him "here is the refridgerator" and we would touch it, "here is the front door" and touch " now we are on carpet" "Oh here is the wood floor"ect.. We did something called "joint approximation" which this VI teacher came and taught us. Maybe if you google it you can get a hit. We would put him on a blanket and count to 1...2...3... and my husband and I would lift each side and say "going up" "swinging left" and "swinging right" "going down now". These things helped orient him, and helped him learn about his body, and how he can move in space, and it also helped his muscles. Hopefully you will have an experieced VI teacher who can help you move her forward throught the developmental stages. Learning midline tasks were harder for my son. We had to work with him for so long for him to learn to clap. He was very unusual for a blind child that he crawled on all fours, and he walked by 13 mos.many skip crawling and walk later.. I have been told that is quite rare. If you can learn to be a "constant talker" about everything you are doing with your baby it will help her understand her world sooner. Even driving in the car "Oh, it is a red light, Mommy is slowing down the car by pressing on the brakes." Oh yea, people will look at you like you are a nut in the grocery store, but Oh well. I'm sure like the rest of us you have had your fair share of stares already. That is a lot of practical advice to try if you want. The harder part, I truly believe now having been at this for 3 years....is keeping up your energy and positive attitude so that you can devote all this time and work. DO all that you can to develop your network of support, and helpers (you will have to educate them too, as you already know). Find something to do that restores your energy and faith during times you may feel overwhelmed or discouraged. That is a VERY big key to your daugthers future success. Okay I've gone on and on. Take Care and feel free to ask any questions you want.

I have edited out personal information for obvious reasons.