A Bad Game of 20 Questions

Have you ever played 20 questions. You ask questions and find out something. OK, this is kind of like trying to find out something from Brandon. Except you don't get answers and they don't make sense, or he answers a question you didn't ask. Tonight Brandon showed me a brush burn on his knee. "I scratched my knee". So I ask " How did you hurt your knee?" "I went eerrr" he says as he acts out something on one knee. MOM - "You fell down?" Brando - "no, Quincy went round". MOM - "Did Quincy push you?" Brando - "no, he went round like eeerrr." Mom- "what did Quincy do?" Brando - "he went round on wheel." Mom - "was he riding a bike?" Brando - "no, a red" Mom - "a red what?" Brando - "It had wheels". Mom - "Was it a scooter?, did he fall on you?" Brando - "no" Mom - "How did you hurt your knee?, did you fall off a bike?" Brando - "no, I went eerr."

It goes on like this for 5 more minutes and I still don't know how he hurt his knee or what had wheels or even what he was doing today. One day, I will have a conversation with Brandon and both of us will know what is going on. It's coming. One Day.

Now, back to Lauren

I know I have to get back to Lauren. She's on her toes again, a lot. That means I either have to go back to physical therapy again or just try to do it myself. You see we've done this before. Serial casting, braces, stretching, hiking shoes, nothing really worked. I probably should take her back to the neurologist. We had the muscle all stretched before the surgery to remove the extra bone from her toe. The surgery went well but she still can't bend her big toe. They keep telling me that this has nothing to do with the toe walking. They just can't seem to figure out why she keeps walking on her toes. They thought once the muscles were stretched she would stop. It was less, for a while, but never stopped all the way.

God, it never stops. If it's not Brandon I'm running around for it's Lauren or Arion. This year is going to be crazy for Arion. Senior year and we need to look at colleges, SATs, and ACT. Hell, I still need to get the boy to get his driver's license. I have taken him. He doesn't want it, so he doesn't pass. How can a kid with a 130 IQ not pass a simple test like that. Sometimes I feel like I need to focus on one at a time. It just doesn't work that way. To much going on. I can't let anything slip or I let them down. OK, big fear. Not rational. I know. Can't stop.

GETTING READY FOR IEP WARS

Well, I was woken by Brandon this morning, naked as usual. Talked him into underpants and started my day. Yesterday was Jim's birthday. Things went well and all had fun. Starting to think about next week. I talked to the district about Brandon's IEP for the upcoming year. The district is handling it this year instead of the IU. Two more weeks of Early Intervention and he's done. I know we are going to disagree about the IEP. They refuse to put that Brandon has a Language Disorder in the IEP. The only thing they want listed is the diagnosis they came up with. Guess they don't like that they missed the true reason for Brandon's communication issues. I have to get them to change the 2 sessions of speech from group to individual. Not a big problem since the new school has lots of speech therapy in their program. I know I won't have half the problems I had with Arion. The fights with Arion in the normal school were pretty much a weekly thing. Their idea of behavior modification was to set a goal of prefect and make him reach it. I DON'T THINK SO. They would always get mad because I wouldn't let them do it. "You and I are not prefect, so you are not going to set that as your standard." Yeah. . . That went over good.

I know I won't have the "he won't sit still" problems. They are used to students that can't sit still. They even have time set aside for them to move and get it out of their systems. I remember one teacher having a fit because Arion was sitting on his foot at his desk. She didn't like it when I told her she was lucky he was in the chair.

Well I made it through with Arion and we'll make it through with Brandon. Hopefully, it will be easier with Brandon. I know more now.

I think I should explain Brando's World. It's an expression we use when Brandon does something that makes sense to him and only him. Well we try. Example of Brando's World (and yes, you can hum the tune from Elmo's world, we do). We had to register Brandon for kindergarten. There are some questions they ask and your kids are supposed to answer. Such as their name, address, date of birth, ect. Here are Brandon's answers. Teacher: "What is your name?" Brando: "My name Brando the commando". Teacher: "Where do you live?" Brando: "In a house." Teacher: "When were you born?" Brando: "Batman's Birthday."

Another example. The other day Brandon discovered he had testicles. Well he can't say that so we ended up with calling them "berries". A couple of days later Brandon told us they change color. Each color has a different meaning. Green means he has to go potty. Pink means time to go to bed. Blue means he really has to go potty. Sitter thinks maybe it's a way to express is emotions or how it feels. One never knows.

Thought I should start with the background for my family. I'm married, 40'ish and have 3 great kids. Each of my children have their own issues that we have to deal with as a family. Arion, my oldest, has ADHD. Lauren, middle, is a toe walker and might be dyslexic. Brandon, my youngest, has ADHD and a language disorder. This blog will mainly be about dealing with Brandon and Brando's world (as we call it). The running around to doctors, schools and therapy appointments can be very stressful. I'm always worrying if I'm doing enough. For those who don't know: a language disorder is a problem in the brain. Brandon can hear, but his brain doesn't alway process what he hears correctly. He also has problems communicating back to us.

In the beginning

When Brandon was 20 months old, I called the doctor with a concern that Brandon was not speaking. We were sent to a hearing test and pasted with flying colors. We then started speech therapy at our local hospital. After a year of 1 hour, twice a week session, he had a vocabulary of 200 words. We also decided that he was probably ADHD like Arion. We ended our therapy thinking we were on the road and should continue to make progress. Well, progress ended. I then started what turned out to be a 6 month process of getting him into our counties intermediate unit (special ed) pre-school program. After a year in that program, that did include a half hour speech session a week, we still were not making a lot of progress in communication. I requested the school do further testing (you can do that and they have to do it). After many forms and more evaluations from therapist and a psychologist they concluded that it was just the ADHD that was holding him back. I thought about that for awhile and decided - NO. There had to be more. So... I took Brandon to the Neurologist at Arion sees for his ADHD and asked him. Thank God. After over an hour of working and playing and talking to Brandon he declared me not crazy. He gave the language disorder lots of fancy names (encephalopathy, dispraxia, central language disorder & ADHD) but the long and the short is a language disorder.

Brandon is now back at the hospital getting more speech. The school would not give him individual speech and wouldn't add more than another 1/2 per week. They didn't even want to accept the new diagnosis. After another fight with the school he will be attending a local private school for kindergarten that only handles special needs kids. Great program with lots of speech therapy.