Not so intensive feeding clinic...

            As I mentioned in a previous post, Cyler had an evaluation to see if he was a candidate for an out patient feeding clinic.  The "team" agreed that he would benefit from their services.  They informed us that he would have to be there  5 days a week for 4 weeks and it should be really soon.  (no waiting list).  Now a month later and after I have worked my but off to arrange transportation to and from this "feeding therapy", they tell me that Cyler won't be scheduled until March of 2013.  I have been calling them for the past two weeks just to get a copy of the evaluation.
           Finally, today I get a call that the evaluation is ready.  It's been a whole month!   I asked the lady to email it to me because I was tired of waiting.  I was completely shocked with what I read.  They said that Cyler was cooperative and appropriate, then a few lines down said he was developmentally 22 months old.  Unfortunately, this is because they use "standardized" testing and since he isn't eating "normally" they deduct a ton of points.  Also, there is a small speech delay.  Cyler had a trach most of his life and wasn't able to talk, so that is expected.  Where is the standardized test for that?  
            I still can't help feeling a little upset.  This is my baby.  The boy that they told me probably wouldn't live. Here he is walking, talking, and amazing me every single day.

1.    I see that my son can name off every single car they sell on the market and all they see is a marker for autism.

2.    I see my son taking random objects and positioning them "just so" and then telling me what it represents (creativity and imagination) all they see is a pile of things that he is focusing too much on and if his eyes wander, even for a second, then he must be ADD.

       I did speak to his speech therapist about this evaluation.  She informed me that intellectually  Cyler is at, if not above where he should be.  I felt a little better.   Some reassurance that we are doing the right things here.  I am not in denial.  I know that there are plenty of developmental issues.   However, I take into consideration all that he has accomplished and all that he has been through.  It is important to consider all that he CAN do.  He has plenty of time to prepare for college...I think I'll just let him be a kid for a while.