9/22/09

Jeez time flies.. it's been a bit since my last update. Sorry about that. Ok so we've had 2 more speech session since my last update. THe videos here are the week before last. He was very vocal with her and very tolerant of her techniques. I came out of the session just being so hopeful. She said he has all of the components of speech accept for actual words. So int he video you'll see her working with blow toys. I ended up helping with this. We'd hold his mouth tight around the blow toy and then plug his nose so eh had to breathe eventually and then hoping the sound or movement of hte blow toy will make him want to keep doing it. I amazed at how tolerant he was to us doing all this. She also worked with him on books and she really does a good job of keeping him focused on making sounds on each page before going on. And then the final one is her getting sounds out of him by pounding on his chest. We've been practicing this with him at home too.
This weeks speech session didnt' go as well as the previous 2 sessions. Tyler was tired going into it and has been a little under the weather so he wasn't as tolerant as normal and therefore wasn't as willing ot make sounds. This was the first time that he did more than grit his teeth at her. He smacked at her face and went to pinch her a few times when he got frustrated with her. no worries though, she's a sesoned professional. I will say it's hard to see him get that frustrated, he never cried though, just whined abit. And I know it's for his own good. Like she said.. imagine someone asking you to sit down adn play the piano when you don't know how, it's very frustrating and that's how Ty feels when we ask him to talk. Anyway,
At one point he just started to refuse to make any sounds. I asked her if she thought he was doing this to be stubborn or if he wasn't able to make sounds at that point, she goes a little of both. Its an automatic response when he's happy or upset to make a sound but when he's stable it's harder for him to make the sounds. Anyway, she is everything I could have ever wanted in a speech therapist and hope hope hope that insurance approves our claim so we can get this covered for Ty. Her focus is getting sounds out of Ty and getting him talking and getting him to use his mouth and making different shapes with his mouth an dgetting to nkow his tongue and the sounds that come from his chest and out his mouth vs his nose. She really just focuses on verbal skills and it's fantastic.
As for other updates, Tyler continues to have loose stools which has happend every since we started the TMG.. there was actually a really good article i saw yesterday about TMG and it's role in mylenatino, etc. Since it's not really creating any rash or other issues with his booty, we are gonna keep him on it as I feel the long term benefits outweight the diaareah. The doc said it should ahve wore off in the first month so we'll mention to him next time that it hasn't yet. Ty is doing great at school, is really really happy every day to be going to school so that' swonderful news. he's working with different parapro's this year which I also think is good and they tell us just how smart he is. Oh and Ty is doign really really great in public. ON saturday night we took the kids and Steve's mom out to dinner. We had gotten Tyler a new Tag book for the occasion. He literally played with it 75% of the time we were there, we went to a place that had an outdoor patio and play structure. He did play on that for a bit as well and all by himself :) Ben however wasn't so happy taht night we discovered later that he had a fever and just wasn't feeling that well. But Tyler was fantastic. After dinner everyone wanted to go look at costumes. Ben really wants to be a scarecrow so we decided we could all go out as the Wizard of Oz group for Halloweeen. I wasn't exactly sure how to handle Tyler in the halloween store. i've never literally never, taken Tyler into a store like that just to look around. it's rare that he goes into a store and if so we have a purpose and since he's been refusing to sit in a cart, even that is rare. So I had to put on my thinking cap.. I was afraid he was bored with his book since he'd been so good at the restaurant reading it for nearly 2 hours. So anyway I grabbed a ball I had packed, not sure whY I had packed it, but I did and thank goodness, it was perfect. So we went into the store, as with most public outings I feel my role is to keep Tyler regulated and support him through it. He was a bit leery going in since we had just put him in the car seat and then a minute later taken him out, he gets confused about what's next and doesn't understand the concept of halloween yet. So I picked him up and talked to him on the way ine. WE get inside and he looks at the skeletons a bit and then settles on some platters/plates. He gets out the colored plates and we practice signing the colors and spinning th eplates on teh floor. Soon after a sales lady comes over and asks if we needed help and if everything was ok. I said yep, we are great, he wont' break anything and if he does I'll pay for it. He has autism and doesn't undersatnd teh concept of halloween but the rest of the family was shopping and he's happy playing with plates so that's what we were doing. She goes, oh no problem. Then hew as bored with that and everyone was still looking around so Iw as searching for my next activity and then remembered I had the ball. So they have a very logn hallway there so i started rolling the ball down the hallway and Tyler would come get it and bring it back, kinda like fetch. He was so happy. Anyway here's a video of Ty playing ball with me at the halloween store. look closely and you'll see a different employee come up to me, she had a talk with me on how cameras were not allowed. Man, Ty and I were getting into a lot of trouble, ha!


Ok so now i want to share with you an article I got a hold of this morning.. I just LOVE these stories. I know everyone at one point or another has thought I was a bit crazy or over the top or a little too "into" helping Ty or whatever the case may be but this story epitomizes why I'm that way. Anyone who has a child who has recovered or significantly improved knows that it's an incredible amount of work and dedication and that it takes a bit of "crazy" to pull it off. In fact I just had a coworker tell me that his friend has a child with autiosm who is an adolescent now but couldn't talk (where others could understand( until he was 8. now he's mainstreamed and goes hunting with them. So anyway I love these stories cause it just confirms that my head, heart, and soul are all in the right places to help Ty.


Riley Betz was in the front room of his Montgomery home playing the new Spiderman video game with his brothers Ryan and Patrick. At the moment he was relaxing, but Riley has crammed a lot of activities into his life for an 8-year-old.

Most recently he earned a blue belt in karate, in addition to his work as a student at McDole Elementary School. This may seem like a typical load for a child Riley's age, but he's worked hard to get there.

When Riley was 16 months old, his mother Mary Kay began to notice the symptoms later diagnosed as autism. He would not respond to his name. He would not even respond to claps behind his head.

"That's when our journey began," Mary Kay said.

From this point on his parents underwent a tireless effort to treat his autism, and streamline him into the school system with his peers. And their efforts have paid off.

A few years ago Mary Kay's largest concern with Riley was making sure that he would improve so he didn't have to enter a group home later in life. Now they are considering college for Riley.

"He knows how to run his own engine," Mary Kay said.

There is now research showing what Riley's family has learned first-hand: Autism is treatable with techniques that have greatly improved over the past several years.

But it is not an easy task.

40-hour-a-week job
The effort for this Montgomery family consisted of everything from attending Kindergarten at a specialized school in DeKalb to various therapies intended to improve Riley's skills for socialization.
The therapies included music therapy and hippotherapy, which involves the use of horses to make people with autism and other disabilities more aware of their surroundings. His family also created a therapy room at his home for in-home treatments. There were evenings that Mary Kay stayed up until 3 a.m. researching Riley's condition. For Riley, the road to socialization became a 40-hour a week job.

Those relentless efforts have since paid off. By the time first grade came around, he improved enough to go to the school at the end of the subdivision. Riley went from a classroom where each student had a specialized aid to a classroom with one teacher and one aid that helped all the students.

"Everything's mainstream," Mary Kay said. "He knows how to do everything. We're just maintaining the skills he has."

In the middle of second grade, more improvements meant that he no longer needed some of the other therapies. He's now in third grade and excels in math. He also has many friends -- another sign that earlier efforts to treat his autism were successful. He does still have some neurological symptoms of autism and has trouble with handwriting, but overall his recovery is going well, she said.

Mary Kay knows she put in a lot of hard work, and had access to excellent resources, but that is not always the case. She is concerned with the number of autistic children who may not receive this level of care and will grow up to live in homes for the developmentally disabled.

"I'm concerned about the kids not getting services," Mary Kay said. "There are 18 and 19 year olds not getting intervention. I was lucky enough to bring my kid back to me."

Once Riley weaned himself off his rigorous schedule, Mary Kay accepted a position with the Autism Society of Illinois and now works full time helping other families address this issue.

She sees everything from parents with young children trying to obtain initial care to trying to locate a place for their child to stay once they are older.

The cost to society becomes greater once the children with autism are older. Though it may seem expensive at first, it costs far less to treat children at the first signs of autism than pay for a lifetime of social security, treatments and housing, she said.

Betz said one in every 66 children is born with autism. It is a number that has been steadily on the rise.

"It's not going away," she said. "If things aren't done it's just going to get worse."

9/14/09

Here's a pic of Ty and Ben on Ty's first day of school and also a video from his classroom that first day. They invited parents to come to the first hour of school into the classroom and then we all went to orientation. Tyler really struggled with the first day so you can see in the video he's not overly excited, however, every day since then he's been very very happy and is loving school. He started clinging to me and crying from the moment we got out of the car and cried for good 15 mins once we were inside the class...poor guy. Then he was fine when I went to orientation but at some point during orientation the kids went riding their bikes by and Tyler saw me as he rode by..stopped...and looked again and then started to cry. Poor baby. his teacher left orientation to go check on him and make sure he was ok.. he was fine once they got him back to class.


On the first day of school..or maybe the second.. everyone was singing a song and there was a gesture during part of the song that went with the phrase "whoa" and Tyler said it, yeah!

Let's see... Ty had an appt with his DAN doctor appt last week. Steve took Tyler and called me when it was done and seemed rather hopeless about the situation. he said it wasn't anything like the first appointment that left us both so hopeful. The doc reviewed the urine test results with Steve and for the most part nothing is out of the normal, i.e. not much else we can do in terms of supplements, etc. I told Steve we should look at it like a good thing.. ok we've been doing biomedical for almost 2 years, adn now we have the right recipe of stuff for his body to be healthy.. now that we've done that.. let's move on to therapy,i.e. speech, school, etc. His body is healthy now and is best suited for learning. So I was feeling quite happy about that but after getting the doctors notes you can see the doctor is a bit discouraged and that probably rubbed off on Steve.

The docs words were: "My impression is that he is a 3-year-old boy with a history of autism and a nonregressive encephalopathy (small head) who has shown some apparent improvements with biomedical therapies mostly affecting his socialization with his parents (believe this is from the study not biomed). He still has significant problems with aphasia and lack of interest in peers and a tendency for unusual play such as spinning the wheels of cars. He has not been having the kid of dramatic improvements that I prefer to see."

So yeah that's kind of a downer.. must be he typically sees more improvement ... I thought we'd seen a lot of improvement but it mustbe there's usually more. He's recommending us to consider HBOT, chelation and some other sort of therapY I haven't heard of. HBOT is $1500 a month to rent the machine... 30% of kids show substantial improvement with HBOT. We discussed and need to discuss more and I'm certainly open to the idea but we just don't have $1500 right now.. so for now I think we'll continue with speech and school and the biomed we are doing now and maybe consider HBOT when we get a little bit further down the road and somehow find a way to get ahead financially, ha like that's gonna happen. So for now, we'll stay the course. Still working to try to find a way to get insurance to pay for speech so we can maybe use flex spending to somehow pay for music therapy (if prescribed perhaps!!).

So on Friday night, I was in the kitchen making dinner and I heard the boys playing with the train int he living room (often a source for fighting between them)... I hear Ben say "here you go Ty Ty, you can have the train" and I look to see Ben handing Tyler the train. HOLY SMOKES! I ran as fast as I could into the room and was like, yeah dude, you rock, hgih five for sharing! And luckily I had a bin full of dinosaur "stuff" in my car for rewards for potty training so he could a new dinosaur and a dinosaur egg that expands in water. He was overjoyed, whoppeee so was I. I long for them to play together and tehre were a few times they were both playing with the train and not fighting.. that's the first step :)

So Saturday night was just Ben and Mom time.. I took him out ot eat at a restaurant that had an outdoor patio and a playground so he had a fantastic time. He made friends with other kids and had them all playing dinosaurs adn running around and roaring. Although it also made me realize how much I really need to get him into some sort of social actvity so he can realize there is more to life than dinosaurs. And then we went to an annual otudoor movie night at a friends house. They showed mary poppins and it started late so he wasn't too interested but.....we found a train inside to play with he cashed out on teh way home.

Sunday we took both boys out to eat. We hadn't in a long time. We talked about how difficult it had been to keep tyler engaged recently and how I needed help coming up with ideas/supports to bring with us to keep him sitting. We decided to load up some of his TAg books he hadnt' played with in a while and it worked perfectly..we never even had to play a video. And for the first time.. I thought.. it is possible that we could have managed this lunch with just one parent.. woudl have been a bit hectic but possible.. Then we went to the park and same story. Tyler was having a ball climbing up the silde and sliding down and Ben was making friends. So for the first time ever at the park i thought.. if it were just me... I could have done it alone.. Stay close to ty and keep sort of a zone defense on Ben :)..... My boys are growing up.

So that's about it.. Ben and Steve went to a birthday party yesterday afternoon whiel I hung out with Ty. Today I work 6 - 1:30, Steve dropped the boys off. I pick up Ty from school at 1:45, take him to Speech therapy from 2 - 3:00.. then drop him at daycare around 3:40 and really hope he sleeps even for 45 mins while I run home and change my clothes, pack up dinner and snacks. Pick up the boys at 5:00 and head back to Ty's school for parent support (KIAT) group. If Tyler does not nap, he'll never make it.. he'll probably fall asleep on the way there so fingers crossed. Ben loves the play time with other kids. THe other couple in group right now has 2 girls, one with autism and one without so they are a good match for our kids and I also watn to get Ben intersted in going to school so he can then hopefully get interested in potty training. so that's from 6 - 8.. by the time we get home and kids into bed it's close to 9;15 and then we pack up for the next day, Tyler's lunch, etc. Monday's are exhausting once we are in teh school year that's for sure :) All worth it though.

9/8/09

I was happy to see that my last post was a very happy post. I don't wanna be one of those people that is always writing depressing stories! I swear we do have some very happy moments in our family and also some very hopeful moments. It's just, well, this weekend was hard. I was very thankful that Ben was camping with Grandma, having a wonderful time. As for why this weekend was difficult, it's kind of a whole bunch of things happening at one time and a lot of planning, research and financial stuff to work through in the background causing some tension between Steve and I and when you add on to that Tyler having a hard weekend and really struggling with transitions, it just made for an emotional and physically draining week. We had wanted to take advantage of being a one kid family and do something with Tyler that may take more than one person to manage. We were thinking a fair but couldn't find any local for this weekend and eventually we decided on the zoo. To this point, Ty has not shown much interest in the zoo. I remember from working at Cedar Point that you never know when parks are gonna be busy...a lot of people would think the holiday weekend would attract many visitors so people would stay home and it would be a ghost town. So anyway, we went to the Toledo zoo..as soon as we pulled into the parking lot and saw that we'd have to park in the back part of the overfill lot, I knew it wasn't a good idea. Steve and I often have trouble with the way I communicate what's best for Tyler, etc. we in fact had some issues earlier in the week so I wasn't necessarily as insistent as I would normally be, I was trying to keep the peace and keep everyone happy. So I commented on how it may not be such a good idea. Steve thought we should at least try so we did. We luckily were able to catch a bus to the zoo entrance (that's how far away we were!!) and didn't have to wait, Ty really isn't good at waiting yet and transitions are really tough for him. So in essence that was the majority of the issue, transitions. He struggles to not understand when he's going from one activity to another or has to wait a long time to get to the other activity, especially when he doesn't understand what that activity is. So add that to the still really long walk we had to get into the zoo and the mass amount of people and well even I was a bit overwhelmed. I had remembered he liked the sloth bears and I had really wanted to get him to the new children's area cause I had read good things about it and it seemed like something he'd really like. The problem was just getting him to the bears, and once we did there were a mass amount of people trying to see them. Tyler wanted to climb through the fence to see and obviously he can't so that started the melt down. His melt downs consist of him falling to the ground, crying and hitting himself in the face and refusing to walk. I tried to console and calm him and get him (quickly) to the other side where there was a window right next to the bears, but there were sooo many people, he was just beside himself. He didnt' want up, he didn't want down, he was just hitting himself and crying and gritting his teeth. I gave him squeezes and talked to him very gently and softly. He wanted up so I picked him up but he's stiff and still kind of writhing.. we were trying to find the new childrens area entrance and he just got really mad at me and clenched his jaw and dove in to take a bite of my chest/shoulder. I pulled him away from me and sat him down and gave him lots of compressions, we pushed our heads hard together as I was kneeling down with him and we just pushed against eachother and both cried. I felt so incredibly bad for him. I think this was the first time that Tyler melted down that I also did. The thing was, I wasn't upset or mad at him at all, I just felt really really guilty that I knew it wasn't a good idea and went against my better judgement and then Tyler had to pay the price. We were both hot and sweaty and overwhelmed and it was just hard. It's so hard. I really had tried every way I knew to help support him through the transition to keep calm to find ways to happily get him to the next place but nothing was working so there we both were..crying at the zoo. WHO CRIES AT THE ZOO! So I got him interested in a toy and sort of manhandled him to his stroller and Steve high tailed it to the playground area which was enough to let him run around a bit (he was still melting down about every 1 - 2 mins) and enough time for me to gather myself as I was still melting down. We had it all pulled together and decided to look at the gorillas..again way too many people to get close without being in a mass so we decided that wasn't' a good idea.. on our way out we found the new c children's area so that's where we spent our time and where our pictures are from. There were three things he liked in the children's center... the animal masks hanging n the front (see video and pics - i'm singing snake in the one pic, he loves to touch the objects and have you sign it for him) the stream and the bees in the tree in the play area. We spent lots of time at the stream, really just recouping mentally while he enjoyed the water, although at one point he did try to drown another little girl who came a little to close to the rocks he and I were playing with, luckily I was close enough to grab her before she bit it and the mom thanked me as well, she's like, good catch! So anyway, things like this..the stream that he loved are very difficult to transition him away from, especially when he was already overstimulated and he struggles to understand what's coming next. So I somehow managed to get him out of that stream without too much of a melt down, shew... we changed his clothes and his diaper right there on a bench and I could care less who saw or how inappropriate it was cause there was no way he was gonna last until a bathroom. So the play area he loved as well at least the bees in the tree but as you'll see in a pic I did get him in the honeycomb for a minute. We left after the children's area.

Coming up with ideas/ways to soothe Tyler is hard, especially when the old stand bys are not working. Coming up with ways to transition Tyler from one activity to the next is also hard, especially when he's already been struggling. So this was a day I was feeling a bit under the weather and Tyler looks to me for comfort (he actually sort of growled at Steve when he tried to take over) and I'm the one most trained to help him but it's hard, it's exhausting physically and a back breaker sometimes, he can be very strong! It's upsetting to see him so upset and it's just hard to always have your brain working at full speed to come up with new ideas, etc. Tyler at home or in a familiar environment is not the same as Tyler in a new environment. It takes a considerable amount of effort to just get him to physically move from one place to another, let alone to keep him engaged and happy while in that new place. There are times we turn down an activity or get together because I just don't have the energy to make it all happen sometimes. The weeks can be draining, now that school is in session the schedule is draining. Worth it absolutely but sometimes the things that aren't vital to his well being or our families happiness, sometimes those things aren't possible. not if we are all able to maintain our sanity. Gosh sorry to be so depressing today, life in the world of autism is tough and most days I keep everyone happy but this weekend, well I had just lost steam. Luckily I've got it back and I'm really happy that Ty is back in school, we resume speech on a normal schedule next week and we are actively trying to figure out a way to get Ben in some sort of group activity and get him more involved with peers as well as find a way to figure out some more ways to free up some finances to help easy the burden. So hopefully more good things to come. Please remember that this journal is a way for me to capture all that autism means and does to our family. So one day when Tyler is 9 and we all have a wonderful family day at the zoo.. I can go back and read about this trip to the zoo and know how far we've come and how all the hard work was more than worth it. If anything, this trip to the zoo, just empowered me even more to know that I have to keep my strength and will power to keep Tyler moving forward in life so that he doesn't have to feel the way he did that day anymore.

9/3/09

Yeah, Yeah, Yeah..lots of good stuff to report. When I picked up the boys from daycare last night, I was hanging out for a bit talking when I realized Tyler was starting to blow air out his mouth. To this point he has never blown air, i.e. blow bubbles, blow out a straw into water, blow out a candle, etc. This is fantastic news..another piece we needed to come together to help him talk. There are many things we can do to reinforce this behavior like today he had an airplane whistle at speech so if he would have blown into it,t eh propellers spin and he loves spinning. Anyway, probably not huge news to anyone but me but I was elated when I saw/heard him doing this, yeah Tyler. I gotta go get some more "blow" toys for him to practice on. An So last night was family movie night, Toy Story was the choice. Ben loved it by teh way. Anyway, I think it was our 5th family movie night and TYler participated more than he ever had in the past.. In fact, when we first started the movie and had asked Tyler to sit with us, he just started running back and forth so in order to keep it tru to family movie night and allow ben to actually see/hear the movie, I put one of Tyler's fav video's on in the foyer. He did watch it for a few minutes, but then he kept coming back over to us to read a book to him or something and then eventually he just kind of laid down where we all were and hung out with us for a bit. It was great. I was able to get a picture with my camera, Sorry it's dark but i didn't want Ty to get distracted if I turned on a light and I Don't have a flash on my phone so poor quality but awesome to capture everyone participating in family movie night. See...there is hope for our family yet :) Ok, now on to speech therapy, woo hoo! Ty did great, really great. she began the session by just saying hi to him and seeing how he interacted, etc. He was making a lot of sounds and she said this was great, he's got a good foundation for language by the different inflections, etc. I get into details in a minute but the whole session I just watched Tyler in amazement. I reviewed the blog the other night to prepare for the speech session and to also give myself a little boost. I struggle during the rare weeks where Tyler is not involved in something becuase i feel like I'm not doing my job to help him move foward, so those are always really good weeks for me to reflect back at his progress. So anyway, I was just so in love with Tyler today, watching him make sounds, and eye contact and signing, pointing, joint eye gaze, etc. and so happy why he was doing it. . None of that came naturally or easily for him. I just felt really inspired by him today and really hopeful and energized to continue our battle for him. He's so amazing. Ok, I was able to get a lot of video of today's session. Tee hee i go through that rant about him being amazing and you'll probably think big deal so he opened his mouth.. how hard is that. Again, for Tyler it's hard, imitation is hard, making sounds is hard, tolerating someone just touching his face is hard. It's all hard and you'll see that on the video. You'll see him clench his teeth and get frustrated with her. She's compared it to playing the piano, she goes imagine i sat you next to a piano and said ok, now play. she goes you'd be pretty frustrated.. that's how Tyler feels when we are asking him to make sounds, movements, words, etc. it's very hard for him, but he TOLERATES it so well! She pushed and pushed and never once did he try to go to the floor to bang his head, in fact towards the end he'd go to her to do his little mouth movements to get what he wanted. Ok so one of the videos where you see her doing numerous movements with his mouth, I am supposed to do this at home with Tyler, she did this a lto during the session, maybe 10 times or more? So I video'd it so I'd remember. She said this is also a good routine to establish so that he knows it's time to work on speech stuff. So anyway, if htat one seems weird I wanted to explain it. The other parts are her just geting him to sign and make sounds for what he watns or at least make the correct movement of his mouth along with the sign. by th way, who knew he knew the sign for lobster... but he does. signed it today. It is on one of his videos but he's never demonstrated it before. i wonder what else he knows that I dont' know he knows... Tyler rocks!!

9/2/09

Tyler has had diarrhea now for about a week, we aren't sure what's causing it. Luckily he usually has a day off in between so it gives his booty and legs a little time to heal. We finally found the ferinsol that the doc wanted us to start giving him. Since it's iron, I'm hoping this will help make him a bit more solid. Poor guy. He still is eating quite well and doesn't seem to be under the weather so I have to believe this is not illness related.

We start speech tomorrow...yahooo!!! I'll be working a late day tomorrow cause Tyler and I have speech in the morning. I think we are gonna figure out a more regular schedule at tomorrow session for when Ty starts school which is next week! Anyway, we are hoping he can go to speech right after school. Also, our hr benefits person is gonna help me try to get the proper coding and possibly try to get it reimbursed through insurance, if not, at least flex spending will cover it and Ihave enough money in flex spending to get us 4 months worth of speech and hopefully we'll have figured out something else by then.

Met up with Amy the other night. She's the director at EMU's new autism collaborative center and they are beginning a music therapy program in the fall so we are hoping to get Tyler into that. Gonna try to look into somehow getting a grant or something to help us with this or maybe biomed costs.

Tyler's picked up some new signs. he now knows "thunder" and "kangaroo"..he also is doing flower which he has been fo ra while just not sure I've put it in. watching him do kangaroo is so funny! We were going through an animal book last night and he and I were both signing the animals. we came to "goose" and I just said goose and he looked at me and my hands (which were doing nothing) and he looked back and me and I said, sorry little buddy I don't know the sign for goose. Gotta look that one up! He was like hey now! He was really enjoying the bee which I just use the "bug" sign for and then we'd play bumblee bumblee coming from the barn.. he got the biggest giggles.

Oh and we were able to get ben and ty to play a bit together last night. started a bit rough but worked out. Ben wanted in Ty's crib to play 5 silly monkey's jumping on the bed. So after that faded out, ben was throwing a ball out of the crib and back to me while I was readying baby baby bear to Ty (steve was doing laundry) so then Tyler wanted to see the ball but Ben was playing with it first so Tyler reached in the crib after Tyler to attack him. I said no Tyler, Ben is playing with the ball. Tyler then had another toy in hand that was similar to a ball and I said that one is Tyler's so Tyler threw it in the crib. I said Ben, Ty wants to play with you, throw it back to him so they had that exchange at least 5 or 6 times with Tyler laughing and Ben although not laughing seemed to be enjoying himself, yeah! Also that little Tyler attack moment, gave Ben a chance to pracice what we talked about "NO Tyler" he did great..no crying.

AND...it was shot night last night we don't think Tyler had a party in his crib last night. Yeah! Can't be 100% sure.. on party nights I tend to put the monitor closer to Steve because he's sleeps more soundly than I do but will wake up if Ty is crying. Well sometime in the middle of the night steve went to sleep in ben's room and hte monitor remained on his side of the bide so even though I didn't hear anything it's possible Ty had a crib party but I didn't hear a peep and he woke up at 6:30 so I'm thinking he probably slept through the night! Yeah.

we go back to the DAN Doc/Pediatrician next week. this is a follow up to all the labs we had run on TYler (thank god for insurance I'll explain that one later). So we go the comprehensive urine results emailed to us and can't remember if I posted them or not but the results were 13 pages long and I have no idea what it means other than the email the doc sent to me which said "this shows excess oxidative stress and possibly difficulty in digesting proteins" so we'll be talking about all that next week. Ok so that one urine test alone was over $1000.00. We paid $100 up front and luckily insurance does pay part of it but it's an out of network lab. just got a statement saying they covered $700 so we have another $350 or so to pay... on top of the $500 we just spend 4 weeks ago. Hence the reason we are gonna try to look for grants, and any way we can flex spend costs, etc. So I somewhat understand why insurance doesn't pay for biomedical treatment, it is somewhat experimental yet you have thousands of parents that will say it works.. so OK I can see that one but why won't insurance pay for speech, OT, behavioral therapy, etc. ITS SO IRRITATING! OK just had to get that off my chest.

Ok so that brings me to what i said last week about the National Autism Institute and some marking material they have out right now. I can't attach files (other than video and pics) to the blog and my attempts and cutting and pasting just didn't' work so I encourage you to follow this link..it's very powerful..hopefully it works..

http://www.nationalautismassociation.org/images/NAA_OBAMA.pdf