I’m not at the stage yet that I’m willing to show Max on video or in photos with the world. I feel strongly that later in life it could affect him with social skills, and I don’t want to be the one that adds to the battle he may already go through. However, I saw a video today of a kid (he looks like a teenager) that had Congenital Bilateral Perisylvian Syndrome (CBPS) and thought I’d share it with you.

This gentleman’s tongue movement is the same as Max. He can’t stick out his tongue at all. We practice over and over, but it’s almost like lifting weights for him – it’s strenuous and hard. He can push his tongue to the edge of his lips, but to actually push it beyond is really tough for him. It’s kind of funny, when we try to do tongue exercises I’ll curl my tongue all the way out and touch my nose (a weird thing that mommy can do), and he laughs. He says, “Mom, you know I can’t do that!” I laugh too, but encourage him to try whatever he thinks he can do. Overtime, he’s definitely gotten better, but his little muscles just don’t allow him to do it.

It’s discouraging for him, I know, but we keep trying.