Monday, February 11, 2008

Reading with my guy. . .

I have a son with special needs-- it's Guy. He is a cool person. Each of my kids are fantastic people for different reasons. Guy is just a complication who demands to be taken simply. I write real letters and I had a revelation after I wrote one this weekend where I told my friend about him. He is almost at grade level for math but like a first grader at reading. He doesn't speak very well at all. He was screeching at a young age as we just couldn't get what he wanted. Speaking makes us human and it was very frustrating for him. He was in speech therapy at the age of 6 months and then I just thought that the people who did that stuff liked him and wanted to work with him so I was like, "Sure!" I thought he'd be out by the time he was a year old. Not quite. As time wore on, the difference between him and his younger brothers, born 54 weeks later then 100 weeks later, became obvious. For a while I was blaming myself-- I'd had A BEER before I found out that I was pregnant and was encouraged to see if he had FAS. The doctor was mad that I'd felt so bad for so long-- he was six or so then and I'd wondered for years. They had posters up all over the hospitals, "Just one drink can cause FAS!"-- KVETCH! The doctor said that one drink has to be a pretty big drink and mine was an 8oz gourmet beer that was probably good for me. Guy did not have FAS. Guy had pronounced delays and no one knew why but he was a great kid. The doctor told me to just be the greatest mom I could be.

Guy's teachers tried to get him to sign. He'd not-- he wanted to be like everyone else. He was five and motioned to the phone and asked in his extremely hard to hear but easy to understand way, "How can I talk on the phone?" They tried to tell him he could use the computer but he said, "What if I want to call my girlfriends?" Hey-- he was planning. He'd not sign. He'd say, "My mother can understand me and so can you." That was the one thing I understood!

When he was in first grade he came home excited and told me about star fish and I heard, "cell regeneration" quite clearly. He then explained with miming and sounds how fishermen would cut starfish up and not understand how they kept having a problem with even more starfish! That told me something was happening-- not-so-bright people don't say things like cell regeneration in first grade!

Anyway, he still struggles but his speech is improving gradually. Tonight we were reading and my husband was playing Weird Al and he started singing his school book to Al's Anakin Guy song. He started reading to the rhythm to the song. He was getting it. How does the mind work? I got out my song book for my music class. He sang with me and read the words and stopped me when I deliberately messed up the words. He moves when he reads. He'd not fidgeting. One moment I feel like he will never be "normal"-- the next I feel like he is beyond it. He is a good guy, has the values we like to instill in our children for honesty and hard work (OK, he is a boy and often does as little as possible but he'd just being a kid!) and he likes to tease his sisters.

If he was at his lever for reading but was behind in math, our lazy society would say it was fine because "math is hard"-- reading is a problem for him. I'm glad that it's reading as that has to be worked on. With the math, they'd give up once he hit seventh grade level.

He wants to learn several languages, be a doctor for children and a musician and sing to his patients. He knows we all can't understand him very well, but we are getting better. Tonight he said, "Who knows? Maybe I'll find a language and all the speakers in that country will say I sound like I was born speaking it!" He has a sense of humor over it even though he finds it frustrating. We focus on the humor and keep looking up for how to make it better for him. I don't think of him as being delayed any more but rather that he is like everyone else but his problems are more obvious. He's not lacking as a person.

He didn't latch on very well and breast feeding was horrid for me. One of his speech teachers asked how he nursed which shocked me and relived me-- so many militant breast feeding people at the hospital and the midwife's office had me in tears, "Everyone can breastfeed!" Well, no, if every pregnancy is different then. . . not every body is the same. I even thought his delays were due to my problems breastfeeding as my older children latched on easily! Guilt trips are terrible once you become a parent!

Anyway, I continue to do whatever we can.

3 comments:

Emperor Ropi said...

guys always choose the simple way to solve things.

Adorable Pancreas said...

He's got what matters right.

Naomi Joy said...

very interesting.Continue working with him, it is what inside that counts.