Monday, April 19, 2010


I had Tuba's IEP meeting today. It went well and he is meeting his goals really well. He is super good at matching. He matches numbers 0-20 and all of the alphabet as well as words and pictures too. He is putting picture stories in the correct order...AND...he is correctly answering questions after having a story read to him. This is really amazing. His teacher will read him a story and then use questions from the AR system to test him. He blew her away by answering questions at grade level!!!!!!!!!!!!!!!!!!!!!! Amazing!!!!!!! Love to be shocked and amazed at his progress. :)

Tuba will be going to HIGH SCHOOL next year. Ohhhhhhhhhhhhhhh....can you hear my stomach acid churning? I'm really nervous and feeling kinda sick about it. It's all new, new teachers, new building, new program, etc. UGH! Most parents are nervous about their kids going to high school but take into consideration that Tuba cannot tell me about his day and he cannot protect himself. The acid is churning! We will go to a transition meeting soon and meet the new team and see the building. I hope it helps me feel better....I hope.

I've been thinking lately about Tuba and what the future holds for him. Of course I'm stressing about what he will do when he's done with school. Kids with special needs get to stay in school until they are 21. And's the big unknown. Of course by then we will have a plan. But, right now it just seems so....unknown. We know he will stay at home and live with us....forever. The big questions are will he participate in a "work" situation.'s too far out to know. On a funny note I realized that when Tuba is done with school Baby George will be in 1st grade. Sheeeesh! I guess Tuba can be my co-pilot driving kids to school and sports.

On the medical front the seizures have been okay. I see about 1 a week or some weeks more and other weeks less. We just increased one of his meds and we'll see if that helps. I took Tuba to the dentist last week. He sees the special dental clinic at our local Children's Hospital. He was terrible, horrible, rotten! Really bad. On top of refusing to open his mouth he hit me, spit on me and bit me! Not fun!!! So....the plan is to bring him back in a couple of weeks and they will be wrapping him in a blanket (called the burrito) to hold his arms down and then have two assistants hold his head while they use a special water tool to clean his teeth. It sounds a bit torturous...but I assure you it is necessary. It's really hard to brush his teeth and they need a good cleaning. STAT!

Overall he is such a good boy, such a nice loving brother and son. He is tender hearted and loves God. He is still singing all of the hymns from Pascha. He is doing really well in school too. He is also taking private swim lessons and is of course loving it! Tuba loves to swim. I heard the high school kids get to go to the pool once a week. That is very exciting. Something to look forward to, something to calm my churning stomach.

Love my sweet Tuba. Love him!


  1. oh i can see how that would be so stressful. so wonderful that he is doing well in school.

  2. Seriously Becky?! I need for ___ to not be in high school - I can't imagine how you feel! I remember him in kindergarten and how he was always so sweet and loving to the other kids, even at that young age. I am soooo glad to hear of his wonderful progress!

  3. Yes, you will have a plan. And who knows what opportunities will be out there in the world in another 6 years. But, mostly, I am thinking what a wonderful IEP!



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