My Beautiful Benjamin

This is a Blog about Ben.

I am hoping to chronicle him a little. The main reason, is so when I go to the doctor, I can have little hint’s I have been writing, or typing, and I won’t forget. Secondly, I’m about the start a massive campaign to help fund some real help for Benjamin. I know I can’t afford it, but I also know he deserves it. Today, he was so tired, and spinning out of control, he literally fell into my arms, and in the saddest way, he said, Help me, and then he rubbed his eyes and said I’m tired. This was after me putting him on a time out for throwing a toy across the room. It had hit daddies guitar and made a loud boom. I was mad, but I know he can’t control himself when he gets like that. And when he looked at me with tears in his eyes, and said,” Help me, I’m tired” I hardly believed he said it. But he did, he really did. He doesn’t usually express mood or desire in that way, but that’s what he said. I don’t even know what to think of it really, except for it to further my drive to help him. He’s starting to be able to tell us more w hat’s wrong with him, which is amazing. Yesterday at the doctor, he lifted up his shirt and said Tummy Owwee. He’s constipated worse then ever, so backed up, and what’s there answer, more miralax, the miracle drug for constipation. Who cares if it makes him go for days on end and then not at all, and then days on end. So what if he has to be on it for the rest of his life. Ahhhhhhhhh!!!!!!!!!!! It just makes me so mad. There telling me I should just expect to have my six year old who still in diapers on Miralax for the rest of his life. Crap. Literally crap. I know there is someone out there who’s not so stupid. Problem is, they don ‘t take insurance.
Anyway, okay, I’m being positive. I wanted to start this blog not only to sh are a little about my Benjamin, but also to document any changes or differences, so I’ll have something to go back to. So I’m going to start with PRESENT LEVELS

PRESENT LEVELS- MARCH 13TH 2008 AGE 6.5

Eye Contact: I would say, (rough estimate) that his eye contact is difficult to get about 80% of the time. The other 20% is when he is actively engaged with me, or someone else, he is great at eye contact, and seems comfortable with it. But most of the time, it’s a struggle.

Gross Motor: He seems like he’s doing great in this area, but he is still wobbly, and not quite as coordiated as a typical kid is. He’s still kinda drunk looking.

Fine Motor: Still struggles quite a big with things like cutting, and writing, but he’s been making great progress. He just starting at least attempting to trace each letter of BEN, and saying each letter as he attempts to trace it, that is WONDERFUL! He is cutting, much better then the beggining of the year, but still very sloppily. Most of the time he holds the pencil or crayon correctly. He still mostly scribbles with wide long scribbles. But he will draw a face with eyes and nose and mouth, and ears and hair, but I think he’s been able to do that for years now.

Speech:His speech is still very Dysarthric, but getting clearer. Still most words are difficult to understand by your typical person, but I am understanding more and more. He’s doing a lot of three word combo’s latley, and were even hearing more sentances. The other day he was calling to the kitty to come in through the window and he said, “Come on, Come on”, and then when she made it, he looked at grandma and said, “Yeah he did it! Give me Five!” Two sentances right in a row, with the pronouns and everything. We were all very impressed with that. You still can’t really have a conversation with him. If you ask him “How was your day?” He will usually not answer. That’s more of a cognition thing, or an auditory processing problem then speech though. If you ask him, what color do you want, yellow or red, he will usually answer you his choice. Tonight, I asked him, do you want to read a story, or go right to bed, he asnwerd, “right to bed”. So basically, he is able to answer multiple choice questions, that are not too abstract. If I asked him, “What is your favorite color”, even though he knows all the colors, and can name them, he wouldn’t be able to tell me his favorite color. I don’t think anyway, he does amaze me sometimes. Sometimes he say’s hello and goodbye, but you usually really have to press him for it, and sometimes it’s just not worth it.
Acidemics: He definetly know’s his numbers 1-20, but he does seem to have a little trouble going from 19 to 20, as does Elijah. I think if I got him started he could get through the 20’s, but I’m not sure. He know’s all his colors, and shapes, the basic ones anyway, I think he has a bit of a hard time with Grey. He hasn’t shown much skill in reading, and he definetly has writing problems, but if he’s seen it before, and know’s what it says, he can usually recognize a word.

Attention: He can pay attention if your one on one with him with something he likes for probably a max of 15 minuets. But if he doesn’t really care for it, he won’t sit and do it. Sometimes at school liz will just busy him with other things, just so he’s not running around the room. He just has a really, really hard time staying still. Sometimes I think it’s because he’s in pain. Being still hurts more when your tummy is in pain. He is always moving, and needing to move, so that makes it really hard to sit still. He does better at school then home, but at home, he’s constantly moving. Sometimes, I can get him to sit to listen to a story, or watch a show, but not for very long. Constantly moving must be really tiring, and boring after a while, so that’s when he starts throwing stuff.