Wow, we moms are really dealing with a wide range of issues! Two of my kids have special needs---Gabriel, 5 1/2 yrs, has Down syndrome. He had horrible feeding problems during his first 4 1/2 months, but was blessedly able to finally nurse after that. I will never again take the ability to breastfeed a baby for granted. Gabriel also had infantile spasms (a form of epilepsy) when he was about 9 months old, but they were controlled by meds and he has now been both med- and seizure-free for 3 years
. I decided long ago that assesments that compared him to other kids were in and of themselves "disabling", so I can't tell you where he "functions" on a developmental scale. I can say that he's not really the poster child for the "Nearly Normal Child with Down Syndrome", LOL! He's just who he is
Michaela is 7 1/2 yrs old, and after a lot of testing in her first year and a half, we found that she has a spinal cord anomaly that has affected her legs in a manner similar to spina bifida. She's tiny, very thin, pretty low-toned, and currently very motivated to walk. She practices walking daily in long leg braces and with forearm crutches, but otherwise gets around either on hands and knees, or in her spiffy purple wheelchair. She may be having surgery in the next few months (her first
) to transfer some of her hamstring muscles to her quads, but we're not positive about that yet.
Someone mentioned that sense of belonging to a special club that you never anticipated joining; that is so true! I remember after Gabriel was born, especially, feeling like I was being dragged, kicking and screaming, down a path I *didn't* choose, and didn't want to go. Things are much better now, and I've learned to look for the brightness in everyday life
Joni, mom to G and M and their siblings, and due 7-17-ish