The Results are In!

Drumroll please..... I got up a little earlier than usual. I needed to get the kids to school early enough to get gas, and head to Cinci again. Mike and I went up to meet with Dr. Ryan for the results of both kids testing they had in March. Some of the things were things we kind of already knew, but there was many new things too. Some of them surprised me. I think it's because I have focused on the obvious things we had been dealing with. Now I am in information overload. I am extremely tired and I think it's just from driving for 2 1/2 hours, listening to a major amount of detailed information for 2 1/2 hours and driving for another 2 1/2 hours back home, picking up the kids from school, going to Mom's for about an hour, taking Simon to scouts and getting home and rushed to bed at 8:43pm. Then started over today. I think I am trying to catch up on sleep from last week too.

End results.....Simon was confirmed to have FASD. He has the physical characteristics that I never saw. I guess you don't see the forest for the trees. But his upper lip, shape of the philtrum, his ears and his hands. His palms are small compared to his fingers. He will also have the depth of the Aspergers defined by the geneticists as well. His IQ is all over the chart because of high areas and very low areas. So that part wasn't surprising. The main thing is they want him back in speech therapy, in behavioral therapy, cognitive therapy, and we'll have to see if the school is willing to offer a little different method of learning to read. He is struggling pretty hard in that area. But she asked if he memorizes quotes, etc. I looked at her and said "how about whole movies". She said his ROTE memory is huge. That is going to be a big advantage for him. That area for IQ was 122. That is extremely high. But when you look at the whole picture you would never know he could do that. They don't recommend any kind of team or contact sports. Competeing with others doesn't work. He'll need to compete against himself. They did recommend karate. I have heard this several times and I guess it's time to give in. At least football is out. It just so happens that this doctor is the brain injury specialist for the Cinci Bengals. So I guess she knows what she's talking about. LOL. She got through to Mike that these sports are not good for a child who is already lacking in corpus callosum. We are trying to help it along, not damage what he has. She is really wanting to remove some meds after getting all of the doctors lined up. Sounds good to me.

We have noticed just this year that Simon seems to have a huge pain tolerance. It takes a hard hit for him to really complain. And then it's just that, a complaint, not tears and all. well come to find out that kids with these issues seem to have this in common. They told us it also is why he doesn't understand why if he hits someone or throws something at someone that it will hurt them. Because he doesn't know what pain feels like himself. Makes sense when they described it all in detail.

He doesn't recognize others space. He is an in your face kind of kid and now we know why. When he wants to speak, he does it regardless of when is a good time.

Sydnee was confirmed having the OCD. She has bilateral hand tremors (which she has started seeing a neurologist for). Her IQ is all over the place too, but in the lower range. So we have a lot of work to do there. She is also having reading difficulties. She has FASD. This was a huge surprise to me. But I should have seen it. When I look back at pictures, there is no doubt. There were many signs, but we always just thought she was small and would grow out of it. Again, you can't see the forest for the trees. She struggles in many areas. They would like to see her come off her meds too. Again, that sounds good to me. They also told us she will be considered PDD like Simon. That made sense, but just hadn't been far enough in testing yet until now.

End result is Sydnee will be evaluated by Dr. Michaud for the tremors.

Both kids will also see more doctors for many things. They plan to start the evals now and then start intensive therapy as soon as school is out. They want to get as much done this summer as possible. They will combine as much as they can also to help with the trips back and forth. And it will help keep things in one facility. Right now we see the providers in many locations. I think most will be downtown Cinci. That'll be great because it's the closest.

They want me to go ahead and look into the Jeff Co IEP program to see if that's an option. From what I hear from others I know, that can take until fall to get lined up. But with us living in Bullitt, and going to private school in Jeff, we don't know what we'll get. Mike does pay Jeff Co taxes, so I hope that helps.

I have been given some good information to check into about the U of L Autism Center and Feat of Louisville. Their websites have tons of information. Now I just have to absorb it all and make some lifestyle changes to be able to incorporate all we learn this summer.

It's funny because I was looking for a notebook today to keep my notes in from all of this. I had gone to Staples and the first one I walked up to said "Trust in the Lord with all your heart". Wow! How fitting. I will need to do this to make it all work and come together. This will all require somewhat of a life change for us. There are so many things you take for granted that just don't exist with our kids.