081909

Tyler did something really cool at camp yesterday. One of the boys was playing with 2 rings and then there was another one accross the room on a table and Tyler went and got that ring and gave it to the little boy. So cool and very social of our little guy! This weekend he was playign with ring sat the public pool we went too and anotehr little boy as well as Ben at tmies were taking them from Tyler and he was knida melting down, even if he got replacement rings so it's cool to see that he was so willing to give up a ring that wasn't even being played with. Or it's slighly possibly he just knew that all the rings went together and it was bothering him that they weren't together.. but I like to think it was the first reason:)

Ok so it's family movie night tonight, we'll see how it goes, it all depends on whether or not Tyler has taken a nap today. We are watching lady & the tramp.Ben gets really excited about making a bed on the floor and he has sat through all of the movies so far, impressive!

I keep forgetting to mention how well Tyler is doing with eating new foods lately and not vomitting. He had cantelope at school the other day and loved it! Also the night before last I was giving him a vegetable mixture (corn, carrots, green beans) and he was no problem eating it, didnt' even make a face. Now I will say that when I was letting him eat the meal on his own, he was never choosing to eat the vegetables but if I could them on the spoon or fork for him, he'd eat them. In the past anything where there was a mixture of textures/sizes/etc. in one bite would have made him sick. I'm just really proud of how far he's come in terms of his eating. I definetly think he eats more than Ben. Speaking of which.. Ben has really grown the past month or so. He is now towering over tyler but a good 1.5 inches or so.... it's possible that this winter they may actually be in different sized clothes for the first time. Even their shoe sizes to this point have remained the same!

8/18/09

Ty has stopped throwing parties in his bed at 3 a.m., woo hoo! So hopefully he's feeling a bit more rested now :) It seems that his body is starting to adjust to the B-12 just like last time, yeah! The headbanging for no apparent reason has also went away, that only lasted a week or so, thank goodness. Hard to protect the kid when you have no idea what's causing it. Before when he'd headbang I could usually tell he was frustrated so I could have my hand ready to block if he did dive to the floor to head bang but when it comes out of the blue, it's pretty hard to protect him. The chewing on his shirt however, continues. We go back to teh DAN doctor soon so we'll talk to him about this and see if there is anything else we can try.

believe it or not, this is the last week of camp! I'm attaching a picture of him riding a pony at camp last week. I can't believe he hasn't once cried when I dropped him off, he must just loev it there and I love all that they do. I can't wait to get teh CD of pictures from camp. A lot of the notes from camp talk about Tyler engaging in play time with his peers which definetly makes me happy. Can't beileve that soon we'll be back into the regular school year! We'll defietly be talking to OT once he gets to school about his chewing too. And then if little Mr. Ben would decide to be a big boy all the time, we can start the potty training process for TY. school initiates this for us, yeah!

So Ben did great last week with the potty training and as promised all summer long, he got to go see the dinosaurs at the zoo. He was in heaven. However, now he keeps going potty in his diaper, underwear, pull up or whatever you have on him and when you say it's time to go potty, he resists a bit. Sigh. None of hte reinforces I tried before worked and I can't afford to take him to the zoo every weekend so I'm gonna have to come up with a new plan.

8/13/09

I decided today to show some of the things i always talk about. Here's a picture of the medication I had to give TYler this morning.. this is just his morning medication mind you, still much more to give him throughout the day. As you can see there are ten different bottles in that picture of various sorts of supplements. Also, as I mentioned yesterday, last night was family movie night. I reference many times how difficult it is sometimes to do anything as a family and this video will kind of show you what it's like. Contrary to my prediction, Tyler actually did nap yesterday which means he was not tired after dinner like normal. So in an effort to try to make family movie night be successful we put one of TYler's favorite movies into the tv in the foyer and then we all sat in the living room watching the family movie which would never hold Tyler's interest.. this is how it looked. This is how much Tyler runs when he's really happy or if he's understimulated. So when we say that it's hard to take Tyler, places, especially out in the open without a lot of things for him to do, this is why. He doesn't do "normal" thinsg like play with other kids or dig in a dirt pile or show off for adults, etc. He needs structured activities at all times or else he'll run. That's about all for today, Ty struggled with music time at camp today:( Tomorrow is water play so hopefully he'll have a better day. He wasn't nearly as chatty this morning has he has been and he was chewing on his shirt a lot so I'm wondering if maybe he doesn't feel good. I had a friend tell me yesterday how her baby was really upset and they couldn't figure out why or how to fix it, cause obviously the baby can't talk yet. I said, that's how we feel with Tyler and have felt that way for 3.5 years. He can't tell us what's wrong.

8/12/09

So here's how the cycle seems to go. On the day Tyler needs a shot, he actually naps, i.e. the medication is wearing off. Then he gets his shot after bath and then he's ready to party. he was up until 10:30 last night. He only napped for just over an hour so it definetly wasn't the nap that was causing the insomnia.. Now today, he'll start rubbing his eyes around noon.. my predictions are that he will not nap and around 6:30 tonight he'll be beside himself with exhaustion. Which makes me feel bad for teh little guy but it is family movie night so we'll be able to spend lots of fun time with Ben if Tyler is in bed by the time we start the movie.

Last night Tyler was so engaged in play time with me. Sometimes I'm so optomistic about his future, last night the only missing element was speech.. he was right on, engaged, happy to be playing, had very little odd behaviors (other than chewing on his short, grrrr) and kept coming to get me for more play time. If he were talking, you would have never known he had autism. Those are great moments.. but then there are moments where I can't seem to break in. I can't get him to look at me, play with me, stop stimming.. those moments are hard. It's a reality check really. We read some horrific stories about teenagers with moderate to severe autism adn with all those hormones running through their bodies they have some pretty god awful behaviors. I hope that as time goes on.. I get more of the Tyler I had last night and less of the Tyler that gets lost in his world.

Steve and I watched a movie last night where a son had cancer.. and it was really sad. And we thought not that we wish anything upon our kids or anyone elses.. but at least with cancer, there is an end. You either beat it or you don't. Obviously it's not that plain and simple and those parents may lose their child completely where we still haev our child and for that I am grateful. But there is some peace at knowing when you'll know the outcome for your child. We just fight and keep fighting but really never nkow whether or not we are gonna make any significant impact on Tyler's life. we won't give up, I'm not saying that and again I'm nto saying that I wish TYler had cancer instead of autism, I'm just saying that I wish I could know by a certain date, if Tyler is not better but this date, that's it, he'll have this degree of autism eternally and then I will just accept it.

The great news is.. Tyler is eating really well and Ben is also continyuing to try new foods and also doing really well on the potty. He's really excited to see the dinosaurs this weekend and specifically wanted it to be "mommy" time so daddy and Tyler are gonna go do something else fun.

8/11/09

Here are some pics of our trip to the pool this weekend. I remembered to bring in the summary notes from splash camp last week. Music Therapist Feedback: The primary goals of musick therapy were to encourage socially appropciate group behaviors (sit in circle with peers), increase participation in structured experiences, and encourage singing/signing basic social vocabulary (hello/goodbye). Tyler consistently stayed in his seat and appeared to enjoy the gros smotor movemetn and music experience during the "airplane" song. Speech Therapist Feedback: Tyler adjusted well to new surroundings. Duringp lay centers, we were letting him have a choice of acitities and then focus on pairing signs iwht the verbale name of each sign. Having him focus on the therapists while they sign was the goal. he initially did not want to leave playtime and go tot eh table but eventually he did so with minimal prompts. Occupational Therapy _ Tler did well the first few mornings but struggled at the end of the week. He is willing to try anything when given verbale driection and support. As I was dropping Tyler off at camp today, I saw the farmer getting his animals out of the trailer for the petting zoo. Really excited to see how that goes. Also, Tyler is doing really well at eating at camp and sitting appropriately, etc. so that makes me happy. He is having very little behavioral issues which is also fantastic! Still hasn't cried ocne when I dropped him off. Whined a bit today when we pulled up but did great once we got inside. He's so happy to be there. Also, I forgot I hadn't posted this yet, but here is Ty playing his piano. I want to get him a new one soon. I found one that has a play book and the keys are colored to help learn how to play songs, etc. So I'm thinking that he'd really like that and he'll have more keys to work with, etc.

8/10/09

Really great news clip to watch on a girl with autism. http://abcnews. go.com/2020/ MindMoodNews/ story?id= 8258204&page= 1#atabc

Also a good reminder for us all to remember to talk TO Tyler not about him as if he's not right there. Everyone forgets that he can hear and is aware that you are talking to him, even if he doesn't respond. I sat down at dinner the other night, he was playing with ab book and eating and doing his own thing, Ben was talking away and I sat next to Ben. Then I said, "hi Tyler".. he was not looking at me and then he waved hi. He is listening to us... so please everyone remember that although he cannot talk, he can hear you and is very very smart.

Speaking of being smart, he's starting to get interested in words in his books instead of pictures of objects, letters or #'s. He'll point to words and want you to tell him what they are, I think he's starting to memorize them. We also said "bye bye" to his booster chair finally..and are going back to the basics. Although it's appropriate for him to use utensils independently for his age, he's finally doing really good at touching his food. He'll pick up sticky and messy things and used to have an aversion to any of his food so we are gonna start giving him little bits of food here and there so its not overwhelming and he can get his hands messy. Very good from a sensory standpoint and of course we want to encourage him to feed himself so we felt this was a good move. So finally for the first time in years... there are no infant seats at our table, wahoooo...

Speaking of growing up.. Ben is finally interested in being a big boy and wants to go on the potty. He did pretty good this weekend. Daycare this morning was rough for him but I think he gets playing with the other kids and forgets. When he's home I'm gonna try to keep him in underwear so he can feel when he's going and stop it and then go on potty, this happened a couple of times this weekend. We also say it's time to go potty vs, asking if he needs to go, especially when he's busy playing something he really likes and this seems to help. And of course get really really excited when he goes. We are going to see the dinosaur robots this weekend if all goes well.

Ok back to Ty.. so far we've noticed the following negative things from the new supplements/medication: insomnia (nothing major), loose stools, and increased headbanging. The positive things.. he's so super chatty, happy, involved and not chewing as much. He's not napping at all but is just worn out by dinner time so he goes to bed shortly after dinner which is ok if we are home (hard to go anywhere after work that's for sure) and it also allows us to have some on on one time with Ben.

Camp is going really well. They send a newsletter home on Friday's with pictures, so cute. At the end of camp they are gonna give us a cd of pics so I'll post them at that time. Ty did really good eating today, had cantaloupe, I haven't been able to get him to eat this before. He is having a Little bit of trouble transitioning but in general is doing well at all activities. He's playing well with the aides and even some other kids and participates in the sit down activities which is great. My meeting with the new speech therapist is the week after next and I'm super excited to get that moving forward.

Still really happy with the fact that we changed DAN doctors... he sends out weekly informative emails about upcoming sessions, etc. and also sends out information on nutrition and I just feel like he really cares about autism, adhd, etc. even if he doesn't know each individual kid, you can tell he has a passion for what he does and is dedicated to helping everyone feel better and lead healthier lives.

8/4/09

So things seem to be going well with the new supplements. Whether it's a result of the new supplements or not, Tyler is chewing on his shirt less, a lot less actually. He also is really really chatty right now. Making all kinds of sounds most of the time, daycare even commented on how he seemed to be immitading sounds a lot. So the B12 shots may be working too, and we increased the dose so that may be why. Ty is starting to have just a bit of insomnia though, nothing major but I heard him a few times in the wee hours of the morning playing with toys in his crib. Hopefully as his body adjusts, this will diminish over time, that's what happend when we intially started the B12 shots, took about 2 months to stop the occasionally insomnia he would have. BUt he's already has pretty much given up naps most days and is always so tired by dinner that he really neesd to get that full night of sleep for his next day. Then again you read horror stories of kids with autism who never sleep, never.. their parents are up with them all night. I can't imagine that and am very thankful it's not us. Speaking of being thankful... I got a google alert the other day about a blog where a kid with autism (non verbal) was also battling cancer and going though chemotherapy.. I can't imagine dealing with that on top of autism, let alone the damage that that treatment would cause in the world of autism. THey continued biomed therapy through the process.

On to other news. We got some updates on Tyler's initial urine results from the doctor, he emailed me of course (love that!!!) one of the test he ran was for food sensitivities and the one food item that we need to remove is eggs. It's a bummer too cause Ty lvoes eggs and it's such a good source of fat and protein for him. Luckily we've checked most of his prepared foods and not many of them have egg so hopefully it won't be too limiting on his diet.

Splash camp is going great. We went to orientation on Friday and it got me really excited. They are super organized and there are so many experts there to work with TYler and I got to meet the aids in his group too to kind of talk about his personality and how to interact with him, etc. They were all wonderful. There was so much attention to detail on their schedule. This week is transportation week and they are having a train come in to give the kids rides, that happens tomorrow actually. The following week they are having a petting zoo come in to the camp and then the follwoing week they are having a bug expert come in and talk about show the kids bugs (ick) i mean cool. So in general though they schedule the day around a physical activity vs a more subdued activity. I.e. they'll go from playground time to speech to OT to music therapy. They provide all teh snacks and all are GFCF so we don't have to worry about his diet while he's there. Yesterday when I picked up Tyler he was sittin gin a circle with the other kids while one of the music therapists played the guitar and they were singing bye bye to all the kids. SO CUTE to see him sit in that circle. I wish he could be at camp 8 horus a day! So anyway, he was great when Steve dropped him off yesterday and today when I went to sign him in, he started grabbing my hand and whining a bit but then one of the aides came out and played with him and a farm toy and he was just fine. he must really like it there.

I'm in the process of reorganizing our toys to get a better system going. When I went through all of Tyler's paperwork the other day (literally bins full) I pulled out some useful stuff we've received over time that talks about songs, actvities, game ideas, play, etc. I'm gonna give a set to daycare too and then have steve and his mom read thruogh it this weekend so we can use that to set up some better structure on the weekends and try to get the boy smore doing the same thing or at least some parallel play instead of us going back and forth between the two which is not rewarding really and I swear the boys don't get as much out of it. I really like how excited Ben is too cheer on Tyler's speech. in face the other day, he initiated, hey mom, Tyler's trying to talk, yeah, Tyler! I love it so I'm hoping we can find ways to get him excited about encouraging Ty to do other things. Maybe this is a turning point in their relationship? by the way the other day Ben was worreid Ty would b bite him if he got any closer (they were both in a slide tunnel together with Steve at the end and Ben was trying to get out but had to pass by Ty, etc.) steve goes, he won't bite you, Ben goes, yes he will, he has autism. Funny cause, we've never said Tyler bitse cause he has autism, ever. Ben drew that conclusion on his own.