We left early. It was tough getting Missy ready to go at 5:15 AM... it was discovered she was in dire need of a shower, and well, let's just say it's cherry season . . . This child does not use the "felicities" on her own without being made to - and cherries to don't stick with a schedule. She also doesn't take to showers at 5:15 AM . . . at least not without a fight.
Now that you have that pretty little picture in your head we'll carry on with our story....
We had a little different opinion going as to which branch of Children's Hospital we were suppose to arrive at. I am usually wrong about dates and times and prices, and addresses and I've learned to allow the smarter half win in these differences without question. Apparently neither of us have learned to check the cold hard facts.
We were exactly on time at the wrong place. We quick made a call and they rescheduled us for 2PM because they knew how far we had driven.
We ended up spending a few hours at REI wandering about and finding next to nothing that suited our fancy.
The whole reason for this appointment was to have a psychological evaluation for a baseline. We needed a better picture of what it is exactly that we are dealing with. Some sort of medical marker to have should things get better or worse.
The evaluation did not happen in the sense I was looking for. No testing was done.
We did get a better picture of what we are dealing with, but it was VERY difficult to hear. The guy didn't give us a lot of hope that things would change much . There was little positive. There was a long lecture on how we can't do this ALONE. There was an enormous and overwhelming amount of information on where we need to go to get a team together. He stressed using a shotgun approach to doing everything possible right now while there is still time - thus, he stressed again we can't do it alone, though he also thinks we need respite. He also told us that if things didn't improve early her chances of being independent as an adult were slim to none. He did say her IQ scores could improve, but it was unknown at this point if it would.
Basically he read her medical file. I've seen it a few times. It's about 5 or 6 inches thick. He skimmed through the school file that is an inch thick that I handed him and found what he was looking for.
Putting everything together and seeing the consistency of all the previous tests, IEPs, etc..., he said we needed to face the fact that we are dealing with mental retardation, "to use an old outdated term". Not just a mild case as we have been led to believe, but a moderate intellectual disability. I was not unhappy that he was talking straight. Personally, I find the new politically correct language vague and misleading. A developmental delay can mean a million things to me and I have believed that time and environment and patience would win out because - it was just a "delay in progress". Now I am seeing a broader picture.... but that doesn't mean I know what to think about all this. He said she might not learn the first 50 times someone taught her something, so many people needed to be involved in the training process to reinforce the skills.
I do know that I need to get on board with the Division of Developmental Disabilities and whatever else and tap into resources that might give her more opportunity and help in the long run.
He kind of poo-pooed the idea of RAD, but he admitted that it was not his field and that we should go with the referral to see the specialists at the University Hospital "to put the idea to rest". Anyway, he doesn't live with this kid.
He asked Missy to draw her family on the white board and she drew four people with fingers longer than their hair. It gave a not so flattering clue to her abilities, or lack of. Then he tried to converse with her which went nowhere.
So, that was our visit.
Now what to do with it.
This Thursday we go back. This time for James. Believe it or not his IQ score is almost identical to hers, but we are most assuredly dealing with a different bag of beans.