I beat myself up over the silliest of things: feeding the boys pb&j’s two days in a row, nagging them too much, not having tissues in my coat pocket when a little nose is running.  But tonight it was over ripped paper.  Not ripped paper really but that Cody could not rip paper.  He was doing a makeup art project as he was out of school sick for the last three days.  He was to trace his hand, cut it out and glue it to a piece of paper and then rip little pieces of colored papers to glue around his hand shape making a cute fall tree loosing its leaves.  His inability to grasp how to rip paper into small pieces scared the hell out of me.  My inability to not get exasperated, frustrated, angry; my inability not to have endless patience and be able to instruct him on such simple things without feeling some panic and a bit of hopelessness creep in this is what I am beating myself up over right now.

Cody from afar is your typical six year old boy.  He laughs and plays, he talks your ear off and loves fart jokes, he gets dirty and proclaims recess the best part of school.  Up close and when you spend a little time with him you start to notice the uneven edges of Cody.  He appears clumsy and walks with a hitch in his gait, he is grabby and prefers to spend his time hanging out with adults instead of other children his age, you catch him staring into space and he makes strange noises at random times.

When I help out in his classroom and I see him side by side with his peers those uneven edges start to overwhelm me.  His handwriting, like drunkenly scratched hieroglyphics next to his classmates handiwork, strike fear into my heart.  His self portrait, barely resembling a head with eyes, looks like something a preschooler drew.  His math papers come home with mostly wrong answers scrawled across them in large uneven print.  I forget that he is labeled by the school as a special needs child.  I don’t think of him as special needs.  I think of him as my son, I make excuses for his delays and do not let his Cerebral Palsy and ventricular hemorrhages during his infancy be a crutch.

I keep thinking there is something more we can be doing, should be doing but I don’t know what that is.  We hired an elementary school special needs teacher to tutor him on his reading and handwriting during the summer so he could catch up.  He goes to physical therapy once a week, has an occupational therapist come to our house once a week, he does adaptive swim two times a week, he has both an OT and a PT working with him once a week at school.  I read with him every night and almost every night I make up practice math worksheets for the boys with fun stamps and bonus questions and ultra bonus questions.  I hype it up as fun, fun, fun and they eat it up and ask me for more.  But I do not see much improvement.  And then I beat myself up over all this extra work, extra therapy.  I beat myself up over him not having enough time to just be a kid.  Then I beat myself up over worrying about all of this so much.

Maybe I am not being realistic, not looking at the whole picture.  I want Cody to be at the same level as his peers but realistically he may not be able to keep up.  I have  no doubt he will get there but when?  And when he does where will his peers be?

Such a rant.  I know.  I am just scared and frustrated and beating myself up.