4/29/09

Here's a news clip from Fox which shows the rally yesterday. Steve is famous!! woo hoo.. You'll also see my gurdian angel Amy, she's holding the "i'm my son's voice" sign. I love you guys!!!

http://www.myfoxdetroit.com/dpp/health/Autism_Insurance_Advocates_Hold_Rally

So I don't have too much to talk about today so it's a perfect time to say thanks, to everyone, everyone who is supporting us. You hear Stephanie in the news clip talk about divorce rates being as high as 90% in couples with kids with autism because of the physical, emotional and financial burden it causes ethe entire family. Steve and I have had our share of rough times and without our support system, I'm not sure we would have made it through all of them. So a big huge thanks to everyone who helps us.

Love to all!!

4/28/09

So here is a quick video from today's autism insurance rally at the capital. Steve went with his mom and grandma (thanks guys!!!) and Steve video'd most of it for me. Here's a clip of Sam, I've mentioned him once before when I talked about the autism run for the Judson Center and how Sam and justin were playing on the swings. Anyway, here is Sam basically saying he's proof that early intervention works and to support the autism insurance bills. So cute and inspirational! I love those little signs in life that help keep the journey moving forward.

As for Tyler, all signs are pointing to that fact that he will talk one day, hopefully soon. I'm not sure i mentioned this the other day but the speech path commented at how hard Tyler has to work to just make a sound, you can see him really really struggle to get out a sound and try to move his mouth to get it to come out right (poor guy). So we are all (school and home) really working on sounds right now. Last night I was playing trucks with him. Let me go back a bit, last night was one of those nights where I felt successful in keeping both boys happy, I usually try to get one set up an independent activity so I can interact with the other and then a bit later I do the reverse. It's rare that we can all do the same activty as their interests are different and their developmental level is different, we try, it just doesn't always work. Ok so anyway, last night I played with ben and then got him busy playing his leapster, he loves the alphabet game and then I went to play trucks with Tyler. he got some fun sound/light trucks for his b-day that when you pull them backwards they move forward so we were playing with those. I would pull the trucks back and say "truCK" really emphasizing the "ck".. it didn't take long and he starting makign the "ck" sound.... so then I'd hold out for the "ck" sound before I'd let the trucks go. So if he said "ah" the truck wouldn't go, he had to say the "ck" sound.. of course I'd give him some free turns too so that he'd stay intersted. Anyway, right towards the end he said "ah" and I didnt' do anythign so he immediately said "uh..ck"... woo hooo.. he got it all out except the "t". I immediately emailed his teacher so they'd know his success and I was super excited. well, when I picked up Tyler from school today they said he said "ck" at school today too and was also making the "mmm" sound when prompted to do so. YIPEEE... everytone feels like he's just so close...

So i think a few days ago I may have mentioned how I was in a sad mood cause I had read his ADOS from the fall where it listed him as having Moderate/Severe autism.. well even though I had seen it before and knew all along this is what he had, reading it on paper that day was just upsetting. He's jsut come so far that it's hard for me to imagine what his label would have been like in the beginning. Steve said that today, he saw many kids that were obviously severely affected and his heart broke for them. You just wish you could help everyone and you know that pain that the family must be going through but on the other hand he said, it made him feel good about Tyler that he has come so far and that he does seem so social comparatively and that there just seems to be something that hasn't quite fired up in his brain yet but he seems so close and looks like he tries so hard. So we figure we have a few more "key" steps on the DAN protocol that have really helped some of the other kids like antifungals, antivirals, etc. I'm excited to have some more one on one time with him this summer and the sky is the limit :)

4/27/09 Update

I had a meeting with Tyler's teacher and speech pathologist last week. They had given me a print out of where Tyler stood with all of his goals in advance. We used most of the hour to catch the speech path up on Tyler's history. It's the first time I had met her as she's relatively new to his classroom so it was my first opportunity to kind of catch her up on how far we've come with Tyler. For someone just coming in to meet Tyler they can see wow.. he's happy, he makes ok eye contact, knwos quite a few signs and has relatively little behavior issues but he doesn't talk, so let's get that boy talking. I always feel it important for people just coming into his life to know how hard we worked to get him being that boy, yep we want him talking but all those other pieces were taught to him as well and those were our first steps. but yep, I agree.. let's get some more sounds out of him. She says she wants to hear his voice more so I got some tips from her on how to do this. Oh, I digress a little. My point of hte meeting was that I received a HUGE compliment. At some point during my conversation with them I was explaining something and she (speech) interrupted and said, what is your background? Then she goes, I'm sorry Was that inappropriate? I said, no, it's not, I have a degree in political science in psychology. She goes, you really get it, teh whole behavior thing. I said, that's all thanks to carrie and the study. She goes, no, Carrie is great, but we've had other parents in here that have been thruogh that prgoram as well and don't have nearly the understanding you do. I said, wow, thanks. This is great too because then they know they can just tell me something and that I'll be able to do it without a lot of explanation, i.e. they wanted me to start working on gross motor imitation, which we started this weekend (I'll explain later). ok so the poitn of the story is that Tyler is doing great, great great and not only is school great and he's working with greaty people but he has a mom at home that really "gets it" and he couldn't be in better hands :)

Another really cool thing.. I added up the signs that Tyler can physically do on his own and it's 50!!!! So if you think back to when Tyler started school and he knew only a handful of signs, this is amazing, he really has taken off with signing. He understands quite a bit more than that but he can do 50 all on his own :)

In other big news, school discovered the other day that they think Tyler can read! Well not by sounding out letters obviously but that he memorizes words and therefoer their label. Too long of a story to explain how it came about but basically he saw the back of a flash card at school and the front had a picture of a dog on it but speech hid that picture from him and on the back of the card (part he could see) is the label and some questions about the picture. Tyler saw the back of the card and signed dog without ever seeing the picture. Pretty amazing! Speech told Steve about it when he picked him up from school on Friday and mentioned how very very smart TYler is:) yahoo little guy.. we are so proud of you.

so this weekend we worked a lot of gross motor imitation. Tyler has leapfrog tag books that he loves. Grandma got him a dora one for his birthday and then the easter bunny got him an ABC chicka boom book for Easter and those two are his favorites. INitially he wasn't interested and then once he realized how fun it was and holding the ben on his own wasn't such a bad thing, he wanted to play with those books all the time. Anyway, we realized that these books are great reinforcers so we need to restrict his access to them so that we can uset hem as a reward which is what I did this weekend. Tyler and I sat at the table and I'd let him play with the book for a bit and then I'd take it away and ask him to "do this" and I would clap my hands, then I'd say "do this" and I'd pat my head. I'd go through a sequence of about 4 things depending on his regulation level and then give him the book back to play for a bit. We also got a bit of an oral response out of him cause sometimes I would say do this and i'd say "ahhh" and he'd say ah. I also at times used a flash card to get him to sign what was on the card. The signing is easy for him but the imitation of the gross motor skills and sounds isn't as easy so I wanted to make sure that he was being successful and give him some easy tasks with hard tasks. He's doing really well. Steve also was able to watch me do this with Tyler so that he can learn to do it. You can use this technique for anything we try to teach him really. The key is knowing what to do if Tyler makes a mistake and I also made sure to tell Steve when I made a mistake. It all happens so quick that it's sometimes hard not to make a mistake but with more and more practice, it gets easier and we all get better :)

On a social note we were really excited this weekend about something TYler wanted to go do. We went to our neighbors house on Saturday evening to play with the kids next door for a bit. It was kind of late (past bed time) and after about 20 mins, another little boy accidentally ran into Tyler and knocked him down. Well TYler was tired and therefore beside himself so I took him home to get him ready for bed and to calm him down. The next day after lunch we went outside and got the water table and sand box all set up for the boys to have some fun in the sun. We had beautiful weather. Anyway, Tyler kept trying to walk around to the gate in the fence to go back to the neighbors. Although this created such an issue that we eventually had to scrap our outdoor fun and go back inside, we were really happy that he watned to go back and play with the other kids, especially since we didnt' leave on such a good note. There were about 5 kids that night plus Tyler and Ben and then a good 5 adults so it was great that he wanted to be around all those people.

Oh, and we went to the park and Tyler did much better this time. I think we only walked around teh circle maybe twice. Other than that he was playing on all teh equipment with all the other kids. yahoo! He is really good at climbing up the slide.

We are working through our summer plan for him. School has about a 3 week summer program, EMU also has a program we are considering to supplement some of the other time, I think it is also about 3 weeks long and then the other weeks in there we are thinking about having me do the same schedule I did during the studty where I'm with him 2 mornings out of the week to get some extra time in there. He learns so quickly from me when it's just me and him without distractinos. We are just working through the financial aspects, transportation, and work schedules to get something in place.

Ok I think that's all I wanted to mention. We did get a video clip of Tyler working on imitations at the table so I'll hopefully get that posted soon. We are soon gonna get a clip of tyler eating dinner. It's been a while since we posted him eating and we talked about this in th emeeting with the teacher, i.e. just making sure we are all on the same page of how we get Tyler to eat. We used to haev to use all kind of toys to get him to stay regulated. Then we worked with just getting him to sit on his own and want to eat and once we got that we moved him back to teh table and worked on reinforcing his requests to get down but getting down usually meant he'd bring back a book so now we are working on making sure that he isn't having the book all the time and to make sure he's still eating on his own or attempting too.. it's give and take right? Anyway, we talked strategies to make sure we were doing the same thing so I want to make sure that everyone sees it in case they are feeding him to know how to handle/read his mood. We plan to start using real cups with both boys soon. The easter bunny brought them some fun mugs for easter so it's time to start practicing.

4/20/09

Ty is still making a lot of sounds, yahoo! We heard him a few times using word approximations, i.e. coming close to saying the actual word. I can't remember which words it was, but there was one time that dad, grandma and i all looked at each other like, did you hear that? Ben has been wanting to go to the dinosaur museum for a while now so Grandma, Dad and Ben all went to the dinosaur museum on Saturday morning and Tyler and I went to the Hands On Museum. It was really fun. Tyler really likes the water table at the preschool room. This time it was great because I now know most of the signs for water animals so I was able to sign them all for him and he really liked this. In true autism fashion, he lined up all the animals just right and then would point to them and I'd sign them. Other than fish, he isn't signing the water animals quite yet. There was a nother little girl t here that kept bringing him more animals, it was quite fun. There were other areas of the museum I think he'd really like but we hadn't explored with him on any previous trips. We've been working a lot on transitions and such from preferred items to maybe items that are unknown or less preferred items. This gave me a good chance to work on that again. I knew he would not want to leave the water table but it was time to go see other thing. I gave him appropriate warnings and counted down 5, 4, 3, 2, 1, to say good bye to the water. He screeched a little but walked on his own free will over to the apron hangers to put away his apron and then we walked to the exit door of the water area, he wasn't happy but wasn't crying or kicking his feet up.. we were leaving that area entirely. I knew he wouldn't fully understand what was happening as that was the only area of the museum we knew so I just said, we are gonna go play with lights (so he'd know we weren't leaving) and then picked up him up and we played dog (ooh I have good news there too, will explain later) and he was giggling and we got outside the door and went up instead of down so I think he realized we weren't leaving. Then we got to explore the lights and that was so fun, that's the video that's attached. We were dancing away having a great time. We left there and picked up everyone from the museum and went to a park in Ann Arbor for a picnic and some play time. It went very well. I brought a chair for Tyler and a blanket for the rest of us. I thought if Tyler had a chair to sit in, he may have an easier time sitting still to eat and he did. It went great. Everyone played on the structure and swung and it was a lot of fun. Ok back to the "dog" play. I always ask people when they have horse play or gross motor games to play with Tyler that they have a name for the game, i.e. a sign. A way for Tyler to ask for the game rather than just jumping on someone. Steve uses the horse sign to indicate horseplay when he roughhouses with Tyler. Tyler loves it when we play dog, it's definitely provides him some sensory input and it's a way for him and i to communicate so fun for both. every time we play, I'll play once with him (i initiate the game) and then after that first time, I ask him to sign dog before we play again. He does this quickly and we continue the game a few times until i feel he's gotten the appropriate amount of sensory input and hten I give the one more time warning and then we are done. This weekend we were up stairs and Tyler came up to me (I was kneeling on the floor) and stepped upon my thighs and clenched his jaw and shook a bit, that means he needs some sort of squeezes, but he did not ask for it in an appropriate way. So I ignored him, did not make eye contact, did not give him any input other than to remove him from my legs and stand him back on the floor. Then.. the greatest thing happened, he signed "dog", yahoo. So immediately I started to play "dog" with him. Ok so dog goes like this, I get really really close to his head and neck and bark, growl and pant. There are lots of squeezes and pressu re involved and the panting his his favorite as I think eh likes my breathe on his neck in between the squeezes. He gets overstimulated quickly so I just monitor him to make sur ehe's getting the right amount of input and then end it as soon as I see him start to get too much. This may be too hard for me to explain if you aren't seeing it.


On to a quick updated about Ben, he's doing great in his big boy bed. it's funny cause last Saturday morning he was standing outside his bed saying Mommy, I'm ready to get up, ha. I walk in there and say Ben, you are already up. So cute. He's been a bit more obsessive than usually with dinosaurs and has this obnoxiously loud roar that he's continuing to do. We are hoping that it's just a phase and he grows out of it. We are also hoping to get him into some sort of sport or something this summer to get him around other kids with other interests. We probably don't expose him to as much as we would if we didn't have Tyler and realize that although he's incredibly social, especially to adults, he's a bit awkward around other kids. For example, playing on the play structure at the park, he just walked around the one area roaring but no one (kids) knew what he was doing. What was kind of cool about it all is that Tyler looked like the typical kid playing on the structure compared to Ben. So we realize all kids usually have a fascination with something and that it changes, i.e. Ben used to love trains but we want to make sure that Ben is getting exposed to normal social activities for kids his age so that we don't hinder him because of what we do for Tyler, it's a balancing act. So hopefully we can get Ben into soccer or swimming or something this summer.

03/14/09

P.S. We are growing out the boys hair to get a new style/cut, so that's why both of their hair looks disheviled!

Here's a video of Tyler and I playing with the remote control car. Both Tyler and Ben like to watch the car spin on it's side. We took 4 small video clips and I struggled with which one to post cause they all have different things I'd like to highlight. I decided to show you the first one we took cause it's the one where he's the most interested and happy and it's so fun to hear him giggle. So the things that you'd see in the other ones and miss in this one is that I was just getting him engaged in this so i didn't turn the car on/off as much as I do towards the end. First you want to make sure yuo can hold his interest so my demand is a bit lower on him. Also, you'll notice that he gets very stimmy with the car at one point, turning the wheels with his hands. In the next set of video clips you'll see how I handle this which is to basically ignore (not reward the behavior) and I turn the car over to get it to be functional again and then engage him appropriately rather than inappropriately. In this clip, he comes out of the stim on his own rather quickly. Also, since he is so excited, it's hard to hear the "ah" which he's using to request for "on' in between the giggles and laughter, as the future video clips go on, I actually was able to get a pretty clear "ahhhhhhn" out of him so that was pretty cool.. slowly working towards the "N" sound. What's great about this video in general is it shows that Tyler is wanting to use sounds to get something the way he watns it rather than signs. Not that signs aren't great, they are, but it seemed that his sounds had diminished as he was learning more signs. This is not uncommon by the way, they concentrate on learning one skill at a time. So just a few weeks ago, he would have been signing "go" instead of using a verbal cue to get the car to go. So it's nice to see that he's wanting to use verbal cues as well as signs now. Funny how I can write so much about a little clip!


Here are the pictures I promised from Easter and amazing enough we were able to get 2 pictures each that have both boys in it, sorry they aren't looking at the camera though. one day :)

Here is an article about Dr. Lord from the University of Michigan autism and communication center, she was recently awarded Michiganian of the Year or something similiar. Without Dr. Lord and her work, Tyler would not be where he is. She's the director for all the studies that TYler has been involved with through U of M and hence one of the main reasons Ty is doing so well. Anyway, it's just great to see her be recognized. Susan Risi is quoted in the article, and she's the one that actually diagnosed Tyler. I can think of many turning points in our journey (in the right direction of course) and I remember when the study became available to us and it was right when we were getting ready to sign up for another project and I wasn't sure what was in the best interest of Tyler. I spoke to his behavioral peditrician who said, "Melissa, you cannot get any better than Dr. Lord"... well that settled it for me! The christmas cards from UMAAC all have personalized messages from each of the staff including dr. lord, they are just some of the nicest people. The study coordinator, Julie McCormick, actually played with Ben for an hour the other day while Tyler was in his evaluation with Dad. They are all just fantastic and love kids and have such a strong desire to help. It's great. So anyway, thought you may want to see the article. We certainly have a lot of people to be thankful for!


Catherine Lord: U-M child psychologist a groundbreaker in the world of autism and related disorders

March 28th, 2009
http://www.detnews. com/article/ 20090328/ SPECIAL02/ 903280335
On any given day, you may find University of Michigan professor Catherine Lord fiddling with baby dolls, balloons or bubble wrap.
Her passion for finding the perfect plaything belies a serious mission: to make a fundamental difference in the lives of autistic children and their families.
As a clinical child psychologist, research scientist and director of the University of Michigan Autism and Communication Disorders Center in Ann Arbor, Lord uses toys to gain insight into the behaviors of individuals locked in the mysterious grip of autism and autism spectrum disorders, which now affect one out of 150 American children.
Through four decades of work in the United States, Canada and England, Lord has become world-renowned for developing procedures to diagnose autism that are the international gold standard. She's also known for groundbreaking research that involves following a large group of autistic children from toddlers through their teen years to study changes over time.
Colleagues say Lord has a knack for working with families struggling to cope with autism and Asperger's syndrome, a high-functioning condition in which individuals may be verbally adept but lack certain social skills.
"She's good at communicating the complexity of the disorder to parents and helping them understand," says Susan Risi, a longtime colleague at U-M's autism center. "She's a great bridge between the research and the families."
Now on sabbatical and serving as interim director of the Asperger Institute at New York University's Child Study Center, Lord is intent on fine-tuning the autism diagnostic procedure she developed with colleagues so that even babies as young as 12- to 15-months-old can be identified.
"The idea is that if you see a child who clearly has a lot of signs for autism at a young age, there are things -- interventions -- that you could do that might shift the child's development (in a way) that would help them," she says.
Forty years ago, when Lord entered the field as an undergraduate at UCLA, autism and related disorders were little-known and less understood outside limited scientific circles.
Today, Asperger's syndrome is increasingly familiar to the public, thanks to a recent spate of characters in movies, books and TV, including the lawyer Jerry Espenson on ABC's "Boston Legal."
Lord has mixed feelings about the series, which ended its run in December. "The good thing is that the show represented someone with Asperger's who was able to do many things and was clearly very intelligent -- yet it drives me crazy because they didn't quite get it right," she says. "But the fact that people are trying and that so many more people know about autism and Asperger's syndrome, in the end that's good because people will be more understanding of families and more accepting."

4/13/09

Well coming off a great weekend, you'd think I'd feel fantastic but I can't help but feel a bit down today. So I'll go with the good news first. Ben is finally fever free.. he was still running a high fever on Friday night which had me worried since he'd been on anitbiotics for 3 days but he woke up Saturday fever free, yahoo! So he's definetly feeling better now. Tyler is also still feeling good and very chatty and talking up a storm. We got some video of him this weekend of saying "ahhh" to be on for the remote control car to go, hopefully I can get that loaded this week. I'm attaching video now of him reading a book, I'm a few feet away and since this was taken with my phone, the quality and sound isn't so great so I'm hoping it can still be heard jsut so you can hear how many sounds he's making now, he's just very vocal and I hope it stays!


As for other good news, since Ben woke up fever free on Saturday morning we were finally able to get to the mall and have the boys sized for new shoes. I think Tyler's boots were beginning to pinch his feet but since everyone was sick it was getting really hard to get to the store to get them sized and get new shoes. This was by far our best trip ever to the mall! Tyler was fantastic and I was reminded jsut how far we've come. I don't think anyone there would have ever known that TYler had autism. We had a game plan before we went, I was actually thinking about the supports and plan to put into place while I was with Clifford at the vet on Saturday morning. Tyler walked from the entrance to the shoe store and for the first time, actually stood in the shoe sizer and cooperated with the whole event, no one melted down and noone tried to leave the store early. Boys are still in teh same size shoe, however Tyler has wider feet than Ben. We try to get the boys shoes for summer that can be worn with or without socks and of course about 1/2 size too big to allow for summer growth. Tyler of course did nto like the way his shoes felt without socks but he'll get used to them. We go through this everytime we change shoes with him, he resists, the new way they feel, etc. and we work through it.

So from shoes, we walked to the play area, again both boys did great (adn I was obsesssively sanatizing their hands!!!!) after that we went to the merrygoround and let them ride one time and then headed off for dinner. We wanted to try somewhere new to expose Tyler to new envioronments, etc. Again, he did graet. without knowing it, the hostess sat us in what could not have been a more perfect table! Dinner went well. After dinner, Ben and I visited the toy store while dad adn Tyler went to the bathroonm to change diapers. I didn't think Tyler was ready to understand the concept that you can't play with toys at the toy store, you can only look. And then they were done we went to a store for dad who needed cologne and the boys and I played out in the hallway running up and down the stair ramp and they had a great great time. And then we left. everyone was sooooo gooooooddddd.. I'm very thankful for all the behavioral education that Carrie gave me. I can't express how much it has helped our lives, even with Ben. There was never a scream or cry or anything about having to leave one place for another or not being able to get a toy from the store or not wanting to get off the merry go round. We hear and saw many kids getting upset about all of those things but ours were so gooooodddddd!

On Sunday, we had an easter egg hunt and tried a new brand of gfcf brownies. Niether of teh boys liked them but we did of course! The egg hunt went great, Ben loved it as we had been telling him we were having one. But even Tyler participated. He only needed to see me do it once to understand teh concept and then as long as I walked around with him holding his hand, he'd pick them up and put it in his bucket. I'll try to get some photo's of this uploaded this week

OHHHHHH and he picked up new signs. yeah! He signed apple when I showed him a flash card of an apple and then when I was changing his diaper I was singing him the colors of the rainbow song and he was trying to sign all the colors and he got out purple and blue perfectly! so proud of him!

Ok, on to the news that has me down. I discovered today that if the insurance bills pass, we will still not be covered. It only applies to state funded insurance companies. The city of ann arbor is self funded and Steve's company, I'm pretty sure would qualify as small business so even if we were on his insurance (which isn't nearly as compreshensive as my insurance) so either way we would not qualify. My HR contacdt is looking into all of it for me but it's not really looking so good for us. it's so hard thinking, well one day, there may be a federal bill but again.. time is so so so important. we don't haev a lot of time to wait. I want more for Tyler than he's getting now. I want a good 10 hours at home of ABA in addition to school, I want private speech (he doesn't get specific speech at school very often) and I want music therapy if feesible although I'm flexible on it. I want this all before he turns 3.5. So Steve are gonna do a lot of planning and trying to figure out what to do from here cause he's doing so well and we have another 2 years to really really make a difference in Tyler's life and I want to keep moving forward.

040909

Tyler picked up another new sign yesterday. We were going through some flashcards he got for his birthday and I hold up the cards and for the ones I know he knows the sign I say "what's that?" and then he signs it and then I hand him the card and he gets the card and can touch it (each card has a different texture for him to explore). Yesterday, was the first time that I asked "what's that?" to the card of the baby. I've signed this to him for a year at least cause we used it for rock a bye baby initiation during the early part of teh study, but he never picked it up before and I never really did any hand over hand with him on this one either. Anyway, I said "what's that" and he signed baby and signed it perfectly! Yahoo.. i was very excied. I think he only has acouple more to go out of that stack of flashcards, and the only reason he probably doesn't know them is because I don't know some of the signs for them like tractor, jelly and a few others I need to look up so I can teach him.

The boys are getting pretty used to mom being home and both are having a bit of separation anxiety. I've been home a lot lately cause they'veb een sick. Last week it was Tyler but we kept Ben home too assuming eventually he'd get sick anyway and this week Ben is sick. We went to the doc yesterday and Ben is battling his first bout of strep throat. Poor guy. Anyway, this morning Ben was begging me not to go to work and Tyler wouldn't even get out of the car (we've been working on him getting in and out of his car seat independently. So I carried him into school (cause I hadn't placed any demands on him to walk) and we played dog where i bark and pant and growl, he loves it. It's pajama day at school, how fun. Tyler is wearing bull dog pajamas so it was perfect that we were pretending to be dogs on the way in.

Both boys are getting interested in their Leapsters. Ben was playing with his this mroning so Tyler went over and got his leapster. For the most part, TYler just likes to turn his on and off right now, he's a little impatient waiting for hte games, etc. but we are working on it. We've asked the easter bunny to get him the thomas the train leapster game for easter and I'm thinking that one may capture his interst enough for him to be a ltitle more patient and once he realizes how fun it is and can learn he may be more wililng to be patient with other games. That is if the easter bunny can find some time to go shopping, been busy with doctor appts and sick babies, even the dog needs to go to the vet for ear problems.

Grandpa came down yesterday and brought a big boy transition bed for ben so we are excited to get that set up. As soon as Ben gets used to a real bed, we are going to transition it to Tyler. I've been stressing trying to find a twin bed that has a corner to it and this toddler bed is perfect cause it has railings on the headboard and railings on the side so there is a corner per se. Tyler sleeps with his head pushed up against the corner to get that pressure on his head so I wanted to make sure whatever we found for himw ould provide the same pressure. So we will let Ben use that bed for a month or so and then get ben a twin bed and use that new bed for Tyler

So with all the illness that we've had this winter, it's really hard to move forward on any of our long term goals like Ben being potty trained or planning any table learning time for Tyler. We kind of have been in survival mode since January. I'm really hoping this last bout of illnesses is our last for a few months anyway, so we can make some headway. I really would like Tyler to be completely independent in eating by the end of summer and Ben to be potty trained.

4/7/09 Update

Attached you'll find details for the autism insurance rally. You can also find more information at http://autisminsurancemi.blogspot.com/ I would recommend going to that site if you have time, because there are some video's linked that are very intersting. Steve will be attending the rally this year and I know for sure his mom is also going. There's a real chance these bills will be brought to a vote this year and we need everyones support. If you can't attend, please email your representatives or call them. THere are links on the website I listed of how to do all this.

So Tyler is doing really really great right now. Eating very well, making good contact, sitting still for longer than a second at a time, immitating and making sounds. This morning I "caught" him immidating the signing time video and trying to sign "sun" while i was making breakfast. It kind of came out like his version of snake but it was the cutest thing. We've noticed lately that he's making a lot of sounds again, and I got an email from school confiming they are noticing it too. We stopped giving him his B12 injections when he was sick cause we felt guilty for poking him then and we haven't noticed any regression in ohis speech, if anything, we are noticing more sounds. Now it's not umcommon to have a peaks and valleys in learning and progression, however, we believe to truly determine whether or not something is working for Tyler, we occasionally need to remove it and then re-add it to see if there are any changes. Those injections are $100 a month and cause him to be poked every other day so if they are no longer benefitting him (notice how I put no longer, cause they definetly helped in the beginning) then we don't want to continue obviously.

Oh and I have to tell you something Ben said... so funny. During one of Tyler's sick days, Ben and I were playing dinosaur and somehow he got a huge floor burn int he middle of his forehead near the hairline. He was convinced that, that part of his body is caleld his throat, so he kept saying he throat hurt. We kept telling him/showing him where his throat was and that his wound was on his forehead. Then he's say, that's not my forehead, that's my "owie" Finally we just gave him, so each day I ask how his throat is feeling. Ha... so this morning, I reached up to touch his owie and asked how his throat was feeling. He said, that's not my throat, it's my threehead.. HA HA HA HAHAHAHA.. i about died... he got confused between 3 and 4 and called it a three head. Kids say the best things sometims don't they!

4/6/09

Sorry for the delay in getting an update posted. Tyler was quite sick last week and I spent most of the week home taking care of the boys. Early last week Tyler woke up from his nap, he was fever free,yahoo, so I didn't give him an fever reducer. I took the boys for a walk cause the poor dog really needed to get out and get some exercise. When we got back, Tyler played for a few minutes and then kind of laid down so I knew something was going on, I took his temp and it was 102 so I laid him in the chair with a blanket and got him some juice and gave him some fever reducer. I started making dinner for Ben and I. I ate quickly at the table and then check Tyler's temp again and it was in the 103's.. uh oh. So since I already gave him medicine I was just hoping it would kick in soon, I took off the blanket and his clothes.. checked it 5 minutes later, now it was 104.1. Ok.. temp is going up fast, I was home alone but needed to get Tyler in the bathtub to get his temp down. I didn't really have anything to do with Ben. He's not quite old enough to wander around without supervision in the house and he would be upset at what was going on in the bathtub cause I knew Tyler wasn't gonna be happy. So I ran to my neighbors and she and her son came over and played with Ben while I gave Tyler a "bath"... it was more like torture for both of us, we were both crying. I've had that high of a fever before so I know just how much your body hurts and how freezing you feel.. even though the water was luke warm, I know he was just miserable and kept looking at me with the "why are you doing this" look? So I ketp checking his temp, got it down in the low 103's and get him out and dried him off and kept him in his diaper.. finally it started to come down 102, 101, yeah. By the time we put TYler ot bed, he was in the 99's. woo hooo. I can't remember which day it was but one morning both boys woke up with a fever, we had planned on my mom watching the boys int he morning for us but with both boys sick I decided to stay with them. We were lucky my mom was there though becuase I decided to take Tyler to the doctor to rule out any major problems so my mom stayed wth Ben.

So the doc appt was a bit odd for us, Doc did not see any major physical causes of TYler's fever so he ran a bunch of tests, throat swab, nasal swab, blood draw, and urine test. When I type it out that way, it doesn't seem so awful but believe me, it was. We were there for 2 hours and that is in incredibly long time for Tyler to be anywhere without scheduled activities, I had ran out of things I had brought to entertain him and since he wasn't really understanding what was going on and why we were staying, well it was just hard. Especially the bllod draw an urine test. The boy wouldn't anytning when we were there so it took a while to get him to go to the bathroom and the puck that they put on to catpure the reason had really strong adhesive and that caused a bunch of broken blood vessels in his leg and well he just wasn't happy. But the staff was great and was as accomodating as possible. Anyway, they never actually were able to figure out for sure what caused his high fevers, he had a high white blood cell count so they put h im on anitbiotics and the urine test showed he had a trace fo blood in his urine so they are culturing that and we should habve results soon and we have to go back in 4 weeks for another urine test, oh goodie! So we started antibiotics that day and byt he evening he was doing much better and almost like a new kid the next day which I think was Thursday, he woke up fever free, yeah! He has to be fever free for 24 hours before going to school. He did great all day on Thursday, no fevers, although not eating well at that point, butplaying and doing well. Ben's fever was a fluke cause he was fine. Both boys actually played outside with me, we went grocery shopping, etc. Tyler went to school on Friday.

Tyler is learning two new signs right now and watching him do his version of the signs, is sooooo cute but I am working to clean them up. Snake and butterfly. H

Dad had to work on Saturday so Grandma and I took the boys to the park which is their first visit of the season. Usually the first time we visit anywhere, Tyler is a bit more "autistic" than after we go a few times. I think he gets overwhelemed by all things sensory, trees, leaves, kids, wind, etc. So this trip I let him kind of just be Tyler and do what he wanted and each time we go this year, I'll make thing sa bit more structured. I actually told Steve's mom at one point as she and ben are playing on the swings and Tyler and I are walking the circular sidewalk around the play area, I said, I wish I had a video camera, if someone wanted the definetion of autism, there it was... Tyler walking the sidewalk the play area while all the other kids laughed and played on the play structure, swings, slides, etc. That's autism... Dont' get me wrong, he did play ont he swings but only for a minute or two, he did play on the structure, but again only for a minute or two. Next time I'll make it 5 minutes... so 5 mintuse swing, 5 minute walk, 5 minute play structure, 5 minute walk, etc. I did try to make the walk a bit more functional, we sang, we did gross motor invitations and I signed things for him such as trees and leaves, but in general, that's certainly not what we should have been doign at the park. But I thought it pretty successful anyway, everyone had fun and that's all that mattered. Then we all went to arby's and both boys did great.

We had an "oh my god" moment one night last week. It was kind of late but the boys had taken a long nap and since we were gonna be home with them the next day, we let them stay up past bed time. Steve and I decided tot ry to watch a movie since it was getting late and we'd not be able to watch it all if we didn't start it soon. Sonmehow, Tyler ended up in my lap and Ben ended up in my lap. And there we all sat, still, watching Marley and Me! So you may say, what's the big deal? Well gettign Tyler to sit on your lap and sit still is a huge deal but getting it to happen when tehre isn't any of his normal type of entertainment, well that's a huge deal. And then add in the fact that we were each having a child on our laps at the same time and watching an adult movie, well that is the first time in 3 years that we ever were able to have that. We felt like a normal family, it was fantastic!

Tyler is really enjoying watching Ben on the swings at our house. He looks at Ben to see if Ben is having a good time and if Ben is laughing, again may not be a big deal to those of you who read this and maybe your kids do this every day, but remember, Tyler didn't even acknowledge that there was a Ben for the longest time, he never even used to look at him, let alone cared what he was doing. So it's a really big deal that not only does he acknowledge Ben but he's interstedin what ben is doign and laughing! Which brings me to my next comment.. last night Tyler was sitting on Steve's lap again watchign funniest videos... amazing for us.

I feel like there were a lot of other things I wanted to comment about but I can't remember any of them right now so I'll just save them for another day when I think of them.