07-31-08 - Sad Day

Well today is a sad day. We had to say good-bye to Carrie. I can't believe how fast those 9 months went by! I took a few tips from Tyler today and avoided eye contact with Carrie when saying good bye so I wouldn't burst out into tears. She's changed our lives in so many ways and opened up so many doors, we can never repay her. As much as I wish Carrie could be with us forever, we are looking forward to the next chapter in Tyler's progress.

On another sad note, Ben caught "the fever" too. I left work early yesterday to pick up Ben from daycare cause he was not feeling well. He was still running a high fever last night and it finally broke right before bed time. He was good this morning just extra whiny but no fever. We had speech therapy at our house this morning as well as our last visit with Carrie. The oldest daughter from day carecame over to play with Ben while I worked with Tyler during Carrie's visit and she's staying with him the rest of the day. We've missed so much work lately (Steve was out yesterday morning for Tyler's DAN doctor appt and then i was out in the afternoon to care for Ben) and then with vacation last week and another group of appts next week, we just couldn't take another day off, so thanks Ashley for taking care of our little guy today!

Ok, back to Tyler. He has been extremely chatty lately. A few days before we left on vacation, we started him on new supplements. One day I'll update the blog with supplement names and what they do but for now let's just say we added 2 new things. Anyway, his chattiness seemed to start a few days after we started the supplements. He's really really talking a lot now, even when we are getting close the next shot day. I.e. he gets a B12 shot every 3 days and typically on that day he's supposed to get the shot, you can tell that he's needing it (not talkative or making good eye contact). Tyler has been saying "horse" for a stuffed horse head he has. If you push it's ear, it makes horse sounds. So we make him say "horse" before we push the button it's ear. It's working great. He had excellent eye contact during Tuesday's session and today's session. He also was very consistently saying the "sh" sound for push to push the cars. There was about a 4 - 5 week period where I felt I was really struggling to get him to make sounds, but now he's really making a lot and many new sounds. Speech commented today about how hard he's trying to talk right now. If you want to compare it to a typically developing child, think about all the sounds they make when they begin babbling, that's what Tyler's doing right now and he's beginning to link different sound together which is fantastic.

His receptive language is still going very strong! Today he demonstrated for Carrie that he knew the names of the people on the cover of a photo book. We have a photo book on our sofa table that Tyler likes to pull down and look at. He likes the cover which just has one picture of Steve's brothers and sisters. He likes to point and have us label the names. I will say "Tyler touch Chuck" and he'll touch Chuck's picture or Tyler touch Daddy and he'll touch daddy's picture. When Carrie saw this today she was amazed. She said that it takes a very very long time to train children with autism in face recognition. The face is very very hard for them to look at due to all that goes on in the face and that it usually takes a long time for this skill to come into fruition. Yeah, Tyler!

He also, on his own free will, became interested in a non-sound making puzzle today which is the first. although he did get easily frustrated with the puzzle, we put in a lot of positive supports to make sure he stayed regulated and moved him on to something new when we realized he had enough.

Carrie is working with another family in Jackson right now who has a daughter who is 2 and on the spectrum. She just visited the same DAN doctor we have and was feeling overwhelmed with the protocol so Carrie asked if it would be ok for her to contact us and of course I said yes. That mom had called me yesterday while I was driving to pick sick Ben up from daycare. I basically just did a quick run down of what we've done so far, where we are now, what results we've seen, the cost, etc. I also gave her a piece of advice that we follow religiously. I said, don't look ahead in the protocol, just know what you are supposed to do today and tomorrow and learn the next steps when you get there. No reason to be overwhelmed by an entire protocol, when you do everything step by step anyway. Which brings me to the update on Tyler's appt with the DAN doctor yesterday...

I didn't have a lot of time to talk to Steve about the details or a lot of time to do the necessary research yet, however, here is what I do know. Tyler's urine results were high in yeast and bacteria. The doctor wants us to put him on an anti-fungal that will remove yeast from his system, something that will help combat the bacteria, probiotics and nystatin. We also need to put him on a yeast free diet. All of that may not sound overwhelming to you however he already takes a lot of supplements and since he's not old enough to swallow capsules we hide it in his food and drinks which can get tricky because he's totally on to us :) The doctor also mentioned that as the yeast is being removed from his body, we may see some regression which could last as long as two weeks and it may make him sick as well. Here's a link to a website that explains the biology of yeast removal from a child with autism .http://www.nutritioninstitute.com/Autism.html and here is a link to general biomedical treatment information and what it all means http://www.autism.com/treatable/adams_biomed_summary.pdf. Since we run the risk of another illness, we are decided to wait a month before we make any changes or administer the medication. We want to be fully up to speed on all dietary restrictions and make sure we have found replacements where applicable for any of his favorite foods and make sure he still has enough choices for food because obviously want him to continue eating ;) This will also allow us some time to accrue more time off since we seem to be burning a lot lately and get everyone back to normal before the next step. Plus I'd like to start the new phase of the study on a good note :)

So the the DAN protocol can indeed be overwhelming but we have faith in it. All of the children we know that have recovered have followed the DAN protocol at least to some degree. We also know that we've seen improvements in Tyler with each step we've taken so we trust that we'll continue to see improvements as we move forward. Our mindset has always been, we will do whatever we need to do to help Tyler as long as it's not causing him harm. After a while, you kind of just become numb to the cost of everything. We could be giving Tyler a chance to go to have a relationship with his brother, to go to mainstream school, to play sports, to have friends, to have a family one day... you can't put a value on that.