Wednesday, November 24, 2010

Mama Bear

Suffice it to say, I am even more depressed. We had our meeting with Nikko's and Ronin's teachers. It's always great to see them, and I was happy to spend just a few extra minutes with Nikko's teachers because Nikko needs more time. But after laying out the IEP goals, I just looked at them and said that overall the progress was slow. Painfully slow. There's some progress, of course, but he started out interested this year and now it has PLATEAUED. This is alarming to me. Especially as of late, Nikko's behavior seems to have backslid, possibly due to the infrequent constipation, but also for some unforseen reasons that no one can predict. The attitude when handling Nikko has literally been a "take it day by day" approach. I know the ABA team has been frustrated with Nikko's refusals to sit down at the table immediately and get to work. At school his attention span is fleeting. But the other alarming thing is his preparation for kindergarten. We loosely discussed what Nikko's options could be at the end of the year, but from what I am observing with my rookie eyes, I cannot fathom the idea of Nikko being in kindy next year, with or without an aide. I don't think he has the necessary skills, basically in any capacity, to sit in a classroom with many peers and retain a lesson being taught from a teacher at the front of a class. After lots of pondering and going back to my online village for insight, I believe that there will have to be changes made. Nikko can't keep going forward at the rate he is, because he's not thriving. After this Thanksgiving holiday, I will ask for a meeting with Linda H. and Maria to discuss how to reshape the ABA program, making it intensely language-based because in all reality, Nikko is not going to be able to move forward if he cannot communicate with anyone, peers or teachers. He can't express what he feels or what he wants unless prompted by an adult. It's such a hopeless feeling. I'm trying to shake it so that I can stay focused and do something.

Last night, after hours on the computer, I went to check on my babies before going to bed at 3am. I went into Nikko's darkened room and knelt down. He was facing the wall, snug in his blanket, and I started to weep. A year ago in December, Nikko started saying his first words. I was so elated. But I didn't jump at the opportunity to get him more help, to sign him up for private speech therapy in addition to the speech provided by the school. We signed him up for ABA and he started in January, but in hindsight I should have gotten him speech therapy since that was the biggest deficit. Heaving sobs and trying not to wake him, I put a hand on my boy's head and asked him to forgive me for not getting him better help sooner. Maybe his speech would be different today if I had gotten him intensive speech therapy. I'll never know. But now I have to fix it. I have suddenly become a Mama Bear, whether I wanted to or not.

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