TEST DAY

We got there this morning and Connor was being an angel. Sitting in his stroller (his "safe" spot) and they finally called us back. We go to a VERY small room.

STOP HERE! Just so you know...I was picturing a big playroom and the doctor playing with him and getting to know him, and through this play he/she would see what a smart, funny, and kind-hearted kid Connor is then Connor would be scored according to how well he understood/performed tasks. Not a great score-but not an awful score either.

NOT HOW IT WORKS is what I found out. This is the real world. Doesn't matter if you are sweet and nice-it just matters if you understand the stupid test.

The doctor is incredible. Probably the nicest man working with kids I have ever met-funny, patient, gentle. Connor loved him! As we entered the impossibly tiny room, I got my first twinge of panic. What are we doing in here? How can they possibly expect Connor to DO anything in here but to try and escape? (Picture large bathroom with a desk and few chairs)

The plan we are told is that Connor will sit on one side of the desk and the doctor will ask him different questions. He doesn't have to speak for these questions-he can point, touch, show, gesture towards, etc. It only takes the doctor a couple minutes before he gets a puzzled look on his face and he says, "This isn't going to work."

You see, Connor doesn't really know how to answer anything, he might smile at you or do something funny-but those were not the kind of "answers" the doctor was looking for. He isn't able to look at pictures and show you where anything is, or books, or even things in a room. Then the doctor tried to ask Connor his body parts...That was hit/miss as well. Okay-mostly miss. He did get nose right, but Connor can't help it-he just gets them all mixed up. He seems to know that parts of your face are called SOMETHING-he just has trouble remembering what it is for each.

I was given a long form (10 pages front and back) to fill out while the doctor continued to try and get Connor to respond to anything really. He was mostly just killing time because he had already called for reinforcement from another doctor to come administer an easier version of this developmental testing (the infant to toddler version instead of the preschool one) Connor succeeded in stacking some small blocks During this time I was asked about his speech therapy history and other questions about what he can and cannot do. Eventually the other doctor arrived.

Another nice doctor-SCORE! At least Connor is liking both these guys he is supposed to impress, right?

Here is where it got depressing for us. Right away the doctor was confused why Connor wasn't used to sitting at a desk for therapy type play. He was told Connor had been in speech therapy for over a year. Yes, I told him that he has been-but that it is not a desk setting. It is at home and the therapist follows his lead on what to play with and she gives me instructions for what to work on with him until the next visit. That is how the program works in our city. It sounded lame even to my own ears. I don't fault the program Connor is in-his therapist loves him and fights for him to get more time with her...but most kids are seen every two weeks and for 30 minutes. Just long enough to give directions to mom on what to work at home-so in a sense-it is more like training the mom than teaching the child. Connor is one of the lucky ones seen every week-but even this hasn't been enough to truly help him reach a more functional level for his age. It is impossible under these brief sessions to accomplish very much.

So now that the doctor realizes Connor is new to this way of doing things and not the experienced pro they thought he was, lol, he decides to let Connor get comfortable and start over with a new approach. This time Connor is sitting on Sam's lap and the doctor is able to get through a few of the tasks he needs to rate Connor on how well he is able to do it. He is going to show Connor how to do something, and then see how long it takes (if ever) for Connor to do it on his own-then he scores him. Here are some of the tasks Connor had to do-there is no way I can remember them all-but some of them surprised me that he could do and some of them surprised me that he couldn't...

-Stacking blocks
-Stacking cups
-Draw a line with a crayon on paper
-Open a book and flip the pages
-Unscrew a toy bolt from a screw
-Put penny's in a piggy bank (two directions)
-He laid out some simple objects on the table for Connor. He had matching ones on his side. He would hold one up (a key for example) and tell Connor to show him his key. Then he moved on to the other objects to see if Connor could do them.
-Body parts again (several different ways) When Connor didn't answer where his hair is-the doctor pulled out a brush to see if Connor at least knew WHAT to do with the brush. Body parts on a stuffed animal...
-Show me ______ . (Connor was supposed to point/gesture towards object)
-Two cups. Put a block in one and a spoon in the other. Then he would give Connor either a block or a spoon and see if he would put it in the right cup with the same object.
-Shoestring and 3 large beads with big holes. He showed him how to lace it and Connor had to follow.
-Ball and a cup. Connor had to toss the ball into the cup after the doctor showed him.
-Steps...if he could go up and down steps.

Connor was able (eventually) to do all these tasks-except stacking the cups and those darn body parts.

Anyway-you get the idea...there was no time limit and the doctor repeatedly showed Connor how to do something if he couldn't. When all was said and done, Connor measured 2 years behind. TWO YEARS! The final report will say more and his understanding is that of a 22 month old-but his speech is so very far behind.

The doctor seemed saddened and appalled at the lack of services Connor is receiving with this severe a delay. He also pointed out that it should be looked upon as a rehabilitation, instead of a delay, since he had so many of these milestones before he got sick. He said he would qualify for occupational therapy as well-but since he so desperately needs the speech therapy more, that we should concentrate on getting him as much ST as possible. He even recommended 5 days of ST per week. Funny that our insurance won't even pay for ONE session!@##

So that is where we stand-EXACTLY where I knew we were-it just felt different and sad hearing it again. I was so proud of Connor for all he WAS able to do today, six months ago he wouldn't have been able to do any of it. So I will keep counting these small blessings and just enjoying EVERY minute with him. How could we not? He is our joy.