5/19/08 Update

I haven't posted in the last few days because honestly, I've just not had much positive news to report. U of M and Florida State review our tapes and the latest feedback indicates that we need Tyler to do more work, i.e. have more active engagement. This came at time when we found out exactly how much behavioral therapy would cost us as well as finding out that for sure our insurance companies will not cover any of it. So it was just kind of a downer week. I feel Tyler would receive a better benefit from working with a professional rather than me and am still hoping that although we always plan to incorporate behavioral therapy into our day to day activities, that a professional will be working with him come late summer. It's so difficult to really push him when the whole family is together on the weekends. Plus, Tyler was also under the weather this past week and weekend so it was difficult to "up the ante" and keep him engaged in activities. So the things we really need to work on are:

• More active engagement; Tyler to do more work
• More hand over hand signing... we'll make a video soon of all the basic signs we use.
• More independence...carrying food to table, cleaning up table, helping with vacuuming, etc.
• More sensory activities..due to him being tactile defensive

We worked on many of these things this weekend although getting even a "peep" out of Tyler was difficult. Tyler has begun to turn the vac cum on and off and he's helping to push it to put it away. He also is now throwing away his dirty diaper into the bin all on his own and beginning to wash himself in the bathtub.

We also had seen an activity once on "Jon and Kate plus 8" for some edible playdoh type stuff so I found the recipe and we made a GFCF version for the boys to play with this weekend. It's equal parts peanut butter, honey, powdered milk and a bit of flour for texture. We played with this while at the table and it also turned into a snack which was my hope. Both boys liked the taste. It took Ben along time to try it but once he did, he couldn't stop eating it. We made a boat, fish, train tracks, and a turtle. He really liked eating the turtle! Tyler was much More apprehensive about touching it, hence the tactile defensiveness and why we were doing the whole activity. I had a movie on to distract him and just would periodically rub his hands in it and put globs of it in his hands to touch and then would give him a break. I couldn't get him to pick it up on his own to eat it but he would let me eat it. We'll continue this activity and hope that he begins to like it.

The video I included shows me trying to work with Tyler but not being very successful. You can hear Ben yelling in the background which is typically what happens anytime Ben is around and I hold out for Tyler to communicate. Mind you, I had just spent a good 30 minutes doing the sensory activity with both boys, making boats, turtles, etc. with Ben. Then Ben wanted to show Daddy all of the fun stuff he created so I went off to work with Tyler and Steve and Ben were at the table. Anyway, I asked Steve to stop taping so that he could give Ben some attention and I could go back to working with Tyler.

We also have a pretty good bath routine down which includes a fun song that I downloaded into my ipod for the "wheels on the bus" . This really gets Tyler's attention during bath which can be difficult. We have gestures/signs for all of it and go through the song once w/o any pauses and then play the song "one more time" and put in pauses to see if we can get Tyler to speak up and request more music. We also used some finger paint in the tub for sensory issues, he didn't like it but we just had him do it for a few seconds at a time and he seemed to stay pretty calm.

So Steve and I talked and we are trying to rearrange our weekly schedules to make more time on the weekends where I can find ways to be alone with Tyler at home. Usually it's one parent with both boys while the other parent does chores or runs errands. We started this weekend, so Saturday morning, Grandma and Dad took Ben to the The TreeHouse in Chelsea to play while I had some one on one time with Tyler.

From a biomedical standpoint, we started Tyler on digestive enzymes a little over a week ago and we noticed a lot of negative changes at about the same time. WE called his DAN doctor early last week and he was out of theoffice so the nurse referred us to the pediatrician, we had a hunch it was from enzymes so waited until today to call back. We've noticed Tyler to be overregulated or underregulated but very difficult to maintain regulation and engagement. He also has had puffy eyes, clear watery eyes, and bad coloring, but he's been eating great which is an indicator he's not actually sick. He really has a hard time eating when he's sick. So we spoke to the DAN Doctor today who said that everything is completely normal and we can expect a few setbacks as his body adjusts and cleans out the bad stuff but soon we should see him come out of it and make some progress forward. With everything, it's always hard to add a new biomedical step because each time to does take Tyler a while to adjust but we ALWAYS see improvements after that first week or two, so we hang in there.