Summer Update

We spent the first 1/2 of the day at Clearwater Beach. It was a perfect beach day as it was overcast and not hot at all. Absolutely perfect weather. Both kids love the beach. Especially Charlie. He can sit in the waves for hours. He seems to love the sensation of the water crashing around him. (He also loves to throw sand, which we let him do as long as there is no one near that he can throw sand on!) He loves the water, whether it be the pool or the beach. He has come far with his swimming lessons and now goes under water ALL OF THE TIME. He is doing better kicking and actually swimming and has even gotten fairly comfortable floating on his back. Addison, too, has made great progress in swim lessons. She's quite the dare devil, which makes me quite nervous at times. I have posted some pictures from our fun day today. . . you can see that daddy cut Charlie's hair quite short! I'm not sure if I like it because it makes him look so much older. He's already growing up too fast for me.

I feel like I don't get much of a chance to post these days. I sat down last night and wrote out a nice, long update only to have Adam's computer boot me off and I lost almost the entire post. GRRRRR. . . . Since time is precious for us these days and I want to take advantage of this moment when both kids are actually napping (a slight miracle in our house these days), I'll make this update more brief than it was originally intended to be.

Since my last post, Charlie has had some really good days, and some not so good days. Right after my last post, he had 3 or 4 bad days in a row, with lots of verbal stimming (mumbling that I call gibberish and jokingly refer to him as my little martian), with very few actual, comprehensible words mixed in. I was downright depressed for about a week. I try hard to keep my spirts up, and overall I think I am doing quite well, but it is hard to stay upbeat when your child is having a hard time. I have to work hard to keep myself grounded and in the moment, trying hard not to worry about the future, especially since I have no idea what the future holds and I do think Charlie is making progress. It's a task in patience, faith and acceptance. I think it's the hardest part of parenting a child with ASD.

Thankfully, the last week or so has been pretty good. Charlie's verbalizations have increased. Today at the beach he repeatedly said "ocean, ocean." The other day when the babysitter arrived he looked at her and said "how's it goin?" We all got a nice chuckle from that. At bath time the other night I announced we were going to take a bath and he said "splashing in the tub!" His echo is stronger now, too, than it used to be. He is repeating what is said to him more frequently. It is so funny to me, though, how he uses his echolalia in the appropriate context. Last night I dropped a bunch of raspberries on the floor. I said "Shoot!" and leaned down to pick it up. Charlie said "Gosh dammit!" Ha! (Obviously I don't want him to say that word, but it shows that he remembers how he heard that statement and in what context it was used. He does this a lot. Soothing himself when he gets nervous -- "You'll be ok Charlie" or "she's coming right back" if Adam or I walk away.) I think the increased echoing is a good sign over all because it shows he is imitating more. It's almost like we have to go back in time developmentally, which considering we are dealing with a developmental delay is exactly what we are doing, to when Charlie first learned language. Children learn language through imitation -- they imitate the words and sounds they hear, then learn to label appropriately. At ABA and ST, his therapists have started to sign with him. They are signing "apple," "cracker" and "more" and will work in "jump" and "cookie." The theory behind this is that it will increase Charlie's vocalizations (and research supports this theory). A lot of these children, Charlie included, get so frustrated because they can't communicate their needs or wants, so we have to find alternative ways for them to communicate. The goal is to open up the pathway of communication, then hopefully the words will start coming back at an even quicker pace.

It is a painstakingly slow process, so, again, I must ask myself for patience. I must admit, it is hard to sit and watch ABA sometimes when they do ANOTHER shape shorter or the same puzzles or ask him to do the same things over and over. I was getting quite agitated until we met with the owner to discuss Charlie's progress. She is going to let us borrow a 9-cd disc set, which is a presentation on the ABA-Verbal Approach. It is a seminar hosted by Vincent Carbone, a big wig in the world of ABA and Verbal Behavior. I have watched 2 videos so far, and it does shed some more light on why they do what they do in ABA. Still, I have to remind myself every day, this is a marathon, not a sprint. It will take time.

I am also teaching myself more and more ABA as we are considering setting up an ABA home based therapy where I would be Charlie's therapist. We are still just considering this as an option, and have made no decisions yet. But, it is rather obvious that practicing law is no longer where my heart lies, and probably never was but that's a whole other topic. We have really been doing some soul searching about our approach with Charlie and what is best. Not that I am not happy with his current therapies, but I feel like we could make some changes for the best. I have also read a book about Floortime and am learning more about RDI. These are two therapies that work more on the emotional and social aspects of autism. The parents are the primary therapists in both of these approaches. I think all of these approaches, including ABA, have their strengths and would like to incorporate elements of each. I suspect we will see a plateau with ABA around a year mark, but I think it is good for now because it seems to be the best method for intial communication and attention to task. (Charlie's attention span is fleeting at best.) I have also been researching the TEACCH method, which is heavily used in North Carolina.

From a biomedical perspective, we had another appointment with the DAN doctor. Charlie's second round of tests came back. His glutathione and sulfate levels were very good. I was actually shocked because I suspected all along that Charlie would be low in glutathione. I am not sure if all of the supplements he has been taking increased his glutathione or not. Speaking of supplements, we are taking all of the same ones. Amazingly enough, Charlie drinks his juice down with no problem. Bless his little heart -- I think I would gag from all of the stuff in there! We are going to add in additional Vitamin D as studies suggest that many autistic children are low in Vitamin D, and Charlie's tests did show he was on the low end of the normal range. We are also adding in some Folinic Acid and DMG. I am a little nervous about the DMG because a lot of kids can get quite hyper from it and Charlie is already hyper, but the Folinic Acid is supposed to counteract this. We will also do a follow-up test to see if the yeast and Clostridia have responded to the first round of supplements and meds. Once we do this, we will go off Diflucan and start Nystatin for the yeast issue. (For an interesting discussion on yeast and the effects it can have on all of us, I would highly recommend Dr. Shaw's book Biomedical Treatments for Autism and PDD.) Charlie's stimming has gotten much better -- hardly any hand flapping anymore and very little circle walking. However, he has picked up some new stims -- mumbling (the gibberish I referred to before) and mouthing objects. I'm not quite sure what sensory input he is getting through his mouth, but his senses are definitely seeking some sort of feedback. He would also eat every waking hour if we let him. We have to hide food from him now and be very vigilant in stopping him from eating off other people's plates. Thankfully, he listens very well to discipline and being told what to do. The last few days have actually been better with the eating, so hopefully this is on the decline.

Adam's dad and Sue arrive tomorrow. They will be with us for a week. I think the kids will have a great time with them. Dee Dee (my mom) was here while Adam was in Alaska. The kids just love her, and Addison in particular wanted nothing to do with anyone else the entire time Dee Dee was here. It certainly would be nice to be closer to family. . . which is an option we are heavily considering now. Lots of life decisions to be made for the Taylor family.