I had a million things running through my head last nigh that I wanted to put in the blog, so excuse me if this at all seems scattered. Just remember as you read all blogs that Ben is doing great, he's such a great little boy and is just a joy to be around most of teh time. H e had a ball this weekend at the appleumpkin festival and was such a trooper when it was time to leave. Many kids were screaming and kicking whenthey had to leave the kids zone but when I told my guy it was time to go he came right to me and never made a peep. He's so good :)
I'll first comment on some successes Tyler had over the weekend. He said uh-oh after I said uh oh, that was pretty exciting as he hasn't said it in a while. we also have successfully gotten him to eat a table w/o having to Be strapped to a chair (he still eats in a booster chair). Since we have not yet found a good sturdy instructional table for him, I decided to bring in the kids picnic table from outside. I brought it so it was backed up against the couch so he could lean against the couch as a real chair. As I learned in the verbal behavior workshop, I did reward him with a video for sitting and eating. When he would get up, I would stop the video, say sit down and put him back in his chair. He would get pretty squirmy at times but overall did very well and never once had a screaming fit like he did when we first started to stop the video to get him to sit. So by Saturday at breakfast I think he only got up from the table once and by dinner time on Saturday he was going to sit at the table by himself. This is a huge success for us! So the plan is to get him sitting through the entire meal w/o me having to make any corrections. once we do that, we'll fade out the video and put something less motivating in as a support such a books or a toy. Once that is going well, we'll try to move him back to the regular table in a regular table with the same support, once he's doing that then we'll slowly remove the books toys. It's all a process but having the kid sitting and eating on his own free will is pretty big for us.
which brings me to my second update. For the first time this weekend, Tyler told me he was hungry! Ben hadn't had a very good breakfast but Tyler did. Ben asked for crackers so I put him at the table with a bowl full of crackers. Tyler jumped up in the chair and looked (and gestured) at Ben's bowl and made a sound. I said, oh, are you hungry? So I got him some pretzels. he got upset at me that Ben had something different in his bowl. Up until this point we've never had an issue with giving ben things tyler couldn't have because tyler didn't erally seem to care or notice. So I'm thinking...shooot he's asking for food for the first time I want to reinforce this but he can't have those crackers and in fact I haven't been able to find any crackers that Tyler can have that he likes. So i brought him out some pop corn and a cookie and hoped that one of those would suffice and thank goodness it worked. when we are in the car or out and about we make sure to give Ben GFCF snacks too since there is a greater risk of cross contamination and it's harder to wash hands, etc. but at home as long as Ben is at the table he can have things Tyler can't. Eating at the picnic table does create new challenges as well as Ben rarely eats GFCF food and not so much that Tyler wants Ben's dinner food as of yet but we worry about crumbs, etc. getting into Tyler's food. So we have to keep a close eye on them at the picnic table. Much easier when both parents are there, we don't want to make Ben sit at a different table and feel like he's in trouble or not as special so we just do the best we can to keep Tyler's food safe.
Ok, sorry again for the long post. So we had the walk yesterday which was great and I was much happier with the set up this year than last year. The boys had a great time in the bouncers/inflatables they had there. Also, during the opening ceremony, Tyler's Angels got a shout out since we were one of the top fundraising teams, yeah! Thanks. I was thinking last night just how much preparation went into us just being at the walk and how much discussion occurred to make it successful and wondered if people realized how much has to happen so i decided to share. We have to pack all of Tyler's food and drinks when we go anywhere because there are very few things, if any, he can eat or drink at a typical event or restaurant. So I packed up all the food the night before, including all of Tyler's supplements. We discussed how we were going to get Tyler to eat, i.e. we should take the stroller cause it has a tray and we won't be able to sit him in a regular chair (although we are working on it as i mentioned above). We also discussed how it would be best for me to be in charge of Tyler most of the time as I can typically handle him better in public since I've been trained more and we agreed Steve would just follow my lead and help me with anything I needed. Of course there would be times I'd want to play with Ben but we'd make sure Tyler would be engaged in an activity during those times. We also had to discuss diaper changes as Tyler really struggles with diaper changes in a public setting. With all of that planning, things went off w/o a hitch. No one probably had an idea how much of an effort went into making it a success, but it was definitely wonderful!
So last night I had the pleasure of reading Jenny McCarthy's new book, Mother Warriors. Thanks Grandma! It contained stories of parents who had children with autism and the battles they fought. Tears were flowing throughout most of the book, however, one of the last stories really really got me. I haven't cried that hard in a long time. It was the story of a little boy who started having seizures the day he received vaccinations and long story short, after many attempts to stop the seizure including an induced coma, the boy passed away. I cried for the pain that family felt and the guilt that they must feel and it just opened up a bunch of guilt on my part. I try not to go to the "would of, could of, should of" feelings and focus on the future, however, occasionally those thoughts pop into my head especially when I reflect on just how sick Tyler was after his 12 month and 18 month vaccinations. The 18 month vaccinations really upsets me because at that point i knew my son for sure had autism and I was only 1 week away from reading Jenny's book and learning about biomedical treatments and their theory on autism. I knew that people were concerned about the links between autism and vaccinations long ago, however I didn't know the biomedical argument which is that some kids, those prone to autism have lower immune systems and cannot tolerate those vaccinations in the same way a normal kids can. I knew or was at least worried that Tyler had autism very early on and yet here I was, still letting them inject all sorts of things into his body without question. I wish beyond wishes that at 6 months when I talked to the pediatrician about concerns I would have gotten a hand out that said not only are these the things to watch out for but here are some things you can do from a nutritional standpoint to help your son. Here are some things you need to be aware of. The fact is, pediatricians aren't given any of that info. In the book Jenny talks about her pleas with the American Academy of Pediatrics to listen to the parents that have helped their children to listen to the DAN doctors, many of which are actual medical doctors about what they are seeing in kids. Anyway, I could kick myself cause at both 12 month and 18 month vaccinations I was certain they were causing him to get ill and I did nothing but look for therapeutic ways to help him, not nutritional. Anyway, once I got over my guilt, no looking back, I had an incredible amount of strength come over me (thanks Jenny!) it was just the surge I needed to forge ahead. Some of those mother warriors have it much harder than me, and I'll be damned if I let my little boy succumb to autism. Even if he never recovers, he can improve and he has improved so much already.