I suppose that my ultimate goal these days is to completely exhaust both of my sons. This morning Jake asked if we could go "ride car city" so hey, my internet connection was dead, so why not. We headed to the aquarium, then to a really neat toy store where both boys got new toys. Jake got a fort building kit and Manny got a ride-along toy. Then we went to the organic grocery for lunch and home.
Only a couple of hours after getting home it was time for Jake's horse riding lessons. He did really well, although he only wants to stay on the horse when it is moving (who wouldn't, the alternative is hitting the ground, I guess). He was a bit whiney, but she said he did a lot better than a lot of kids his age who sometimes cry their entire first lesson. We will try different approaches, and more variety than just walking in circles. His favorite part was giving Red cookies. Oh, and the helmet, he couldn't get enough of the helmet. I'm hoping its something he enjoys for a long time...the riding lessons, not the helmet.
When we were done he politely handed his helmet back to Crystal and said "Thank you" in words and sign.
He's asleep in his room now, worn out from a long day.
Cindy took a "Watch Wait Wonder" approach to learning about Jake on Tuesday. She let him lead a lot and then trying to figure out why he does what he does. For instance, turn-taking games are too overwhelming for Jake, even simple ones. For instance, he was kick kick kicking his feet in the air for fun, so Cindy laid beside him and kick kick kicked her legs too. He would go, then she would go. He liked the game, but it was just too much for him. After 3 or 4 turns he had to escape and run do something else. This pattern continued with other things.
I am learning a lot about Jake and always interested in what insight Cindy will have next. Thursday we are going to meet at the park and she wants to see how I interact with Jake on a daily basis. It should be fun.
(alternate title: "The longest 3.5 hours of my life"
So today was the day. At 7:30 the bus arrived to pick up Jake. It was a similar experience to the first time he rode the bus last week. Except this time he didn't go around the block and come back. This time the bus kept going. I was shaking in my shoes when they drove away.
I'm not an overprotective mother. I am an attached mother, however and after the last experience, anyone would be nervouse. You see, last year I attempted to put Jake in a preschool program at a local church. Many days he would cry so hard that he would shut down, literally going to sleep (or unconcious) and would be laying on the floor when I had to go pick him up. He usually couldn't be roused and would sleep on the way home as well. He cried hysterically any time you mentioned school.
So I spent the longest 3.5 hours of my life waiting for the bus, and was nearly glued to the window at 11 AM. The bus doors opened and a smiling Jake appeared. He's very tired, and is resting in his room, but I am confident that today was a success. Here's what his teachers wrote in his book.
9/29/08 Jake was SO excited when he got off the bus today.
(then from the speech therapist) Jake did so well today. He used a lot of words to express himself. He told me he needed help drawing and labeled his drawings. Very good first day. Amber.
(then from his teacher again) Jake has done really well. He loved painting. He ate some crackers and drank some orange juice at snack. You can also send a snack if you want. Jake got very excited when we went to the playground. He did seem pretty tired after a busy morning and was happy to see and ride the bus again. Kathy.
Oh wow, I am SO relieved. The absolute KEY to making sure that school would work out was a good first day. You just can't believe how super proud I am of my amazing smart little guy.
Over his spaghetti lunch I asked Jake "Did you have fun at school?" He said "Go school, ride bus." and smiled
We were quite aware of the fact that Jake can read, or at least learn and memorize words. We had been writing three letter words on his doodle pad or paper and having him read them for a couple of months now. I guess I didn't realize how big his reading vocabulary is. Most of it I'm sure he is learning from the Signing time videos because they always put the written word on the screen when teaching the sign. I realized that he could read one day when I was watching the signing review at the end of the DVD (because he was getting ahead of me on sign language) and he read the word "help" when it flashed up on a blank screen. I thought "oh, he's memorized this." when I realized that he'd never seen the signing review before. He had read the word.
What is probably most surprising is that the reading, like most of Jake's "splinter skills" as they called them on his special education report, is that they are self-taught. His drawing, number and letter recognition, counting and other skills he has learned from TV or educational electronic toys, and yes, sometimes us. His drawing however seems to be almost completely his.
Rarely are his therapists and evaluators interested in these extraordinary skills. They are more concerned with helping him with what he can not do. This is understandable. I think I may work with him more on reading words and get a head-start on that particular skill. Why not, right? Its possible that Cindy may disagree, and I will surely ask her, but hey, if he can already read well when he is five, we can always use the extra time not spent learning to read focusing on social skills.. maybe?
Tonight I made some flash-cards and showed them to him. I wrote some words that I was sure he was familiar with from baby signing time. He surprised me on a couple of them I didn't know he knew "please" and "sorry". The video is of the second time he had seen these particular flash-cards, and he was pretty distracted. He was more interested in holding and turning the cards himself, like he is doing at the end of the video.
Just as Cindy saw on Thursday, Elizabeth got to see a calm and centered Jake today. "A completely different child." She said. We just never know what state Jake is going to be in and these phases last for weeks or months sometimes. And truly he is like a different child. After 7 sessions of completely wildness Jake sat with Elizabeth and played with the shape sorter and a puzzle. She got to hear him speak more than she'd ever heard.
I was sad to tell her that Jake will be going to school and that we'll possibly be dropping the speech therapy at TIPS in favor of the speech therapy through the school system. It will save us about four tanks of gas worth of out-of-pocket expense each month. I assured Elizabeth that it has nothing to do with her, its more of a convenience and financial based decision. Of course all of that is contingent on Jake liking school. Even if he doesn't like it, I can continue to do speech therapy with Amber.
Jake is using phrases like "What's the baby doing?" and "I want..." more and more often. I can get him to say "Please" and "Thank you." much better as well. Not that it has to do with speech, but we have been working very very hard with him to keep him from touching strangers and their watches, and he is at a point where he will walk up to people and say "Hi!" and then lean over and inspect their watch without touching. Not quite what I would call 100% socially acceptable, but its a great first step. Besides, its cute as hell. Maybe I'll teach him to say "Heeeeey, nice watch!"
Thankfully, Steve was able to keep Manny while I took Jake to Dr. Michaels' office. It was probably a good thing too, since Manny napped the whole time I was gone (so Steve got a little work done) and we waited over an hour to get in to see the doctor. Dr. M. was extremely apologetic about our wait time, and Jake was extremely patient considering.
Dr. M couldn't find the report that Dr. Causo had sent, so while we waited on a copy to be faxed over, I told Dr. Michaels everything that Dr. Causo had said. I also had a copy of the prescription for all of the tests that Dr. C. had ordered. Dr. M. seemed to have a similar reaction that I had had last month after I left Dr. C's office. He said that he was really hoping for a simple diagnosis, and he really didn't think that Jake needed all of the tests that Dr. C listed. Well, he said that, in many more words.... I don't want to put words in his mouth, but this is what I gathered.
After we discussed a game-plan, Dr. M suggested that we get the metabolic, chromasomal and genetic testing done first. This will involve me taking Jake to a local diagnostic center for a blood pull. Then they'll send the samples off for testing and well wait a month (everything takes a month or 6 weeks these days).
I am confused as to whether or not I should follow up with Dr. Causo. Since we aren't doing ALL of the tests, do I go back to him? What are we trying to get again? A diagnosis, or "label"? Jake is getting services through the school and through Cindy, and insurance is paying all that they are going to pay either way. I DO want to get the genetic testing done to see what it tells us, but as far as getting a "diagnosis" based on what someone sees, I don't know how important that is. Dr. Michaels says that if we decide to move further, we can go to a Developmental Psychologist in Atlanta if we feel the need.
One day next week I will take Jake to Dalton Diagnostics and have blood drawn (cringe). I am glad that these tests will only require a blood draw. It will still probably be somewhat traumatic for Jake, but it will be over in just a few minutes. At least we're moving forward.
Today was yet another interesting day at OT. Cindy couldn't believe how quiet and attentive Jake was. She wanted to know how long we spent at the park today before OT (about 45 minutes) and was in awe at how calm Jake was. I tried to express to her that this is just how he is. He is at maximum speed plus 100 MPH for a month, then settles down into the state that he was in today for a few weeks. Thats just life with Jake. You NEVER know what you are going to get.
I talked to Cindy quite a bit today. I told her about school. I told her about the bus. I gave her the report from the special ed department. I told her about the riding lessons. She seems to think that they were all wonderful ideas. I also told her that if school works out that we might drop the speech therapy with Elizabeth. For one thing.. it will save us a pantsload of money every month, and if he is getting therapy at the school, why should we screw up our saturdays when we could be doing other family activities? Cindy was in agreement that we should come up with the program that fit our lifestyle.
I enjoyed my talk with Cindy today. She has a lot of insight on every aspect of Jake's treatment that I bring up. I feel like she's a great friend and a great resource for our family, and I look forward to talking with her every week. If I could pick ONE person as an ally for our family in this journey, I think it would be her.
I am worried about my trip to Dr. Michaels office tomorrow. I will have Manny and Jake with me, as I really have no option for care at such a short notice (my husband being the only person who can or is willing to care for Manny, he just has had no opportunity to develop a relationship with any other caregivers...). Dr. Michaels office has recently lost staff, so the wait time in his office and lobby has sometimes been over an hour and a half for us. I am going at 11:30 which is naptime for Manny and lunchtime-quiet time for Jake. I just hope that I don't end up trying to talk out this very important consultation with Dr. Michaels over two restless boys. Wish me luck!
