6/3/08

First I want to say thanks to all of you who followed the Chevy link, it worked, see below:


NEW YORK, NY (June 3, 2008) – Autism Speaks and Chevrolet today announced that the Help Chevy Help Autism campaign, held during Autism Awareness Month in April, resulted in Chevy meeting its fundraising goal of donating $1 million to support the work of the nation's largest autism advocacy organization.During the Help Chevy Help Autism promotion, more than 58,000 visitors to autismspeaks.org and chevy.com took a free virtual test drive of the all-new Chevy Malibu, the 2008 North American Car of the Year. Those who participated in the virtual test drive were offered a free 30-day online trial of XM Satellite Radio. Chevrolet committed to a minimum contribution of $500,000, but every virtual test drive taken got Chevrolet closer to its goal of donating up to $1 million to Autism Speaks to support its mission of increasing awareness of autism and raising money to fund autism research.

Things are going well in the Cretsinger household. We had a busy weekend this weekend. Grandma came for a visit and mom had a 10k race on Sunday. So Dad and Grandma got a chance to go out to eat and spend some time together on Saturday because mom wanted to stay in and go to bed early to rest up for the big race on Saturday. Thanks Grandma for all your support through the busy weekend!

Tyler is doing an AMAZING job of eating on his own. We also have went a few days w/o having to provide any supports for him during meals/snacks,i.e. usually we keep him occupied with books, cars, etc. while he's eating so that he stays regulated and continues to eat. He's doing so well at not only staying regulated but also feeding himself. He's really been more calm lately recently, we can see it in all areas. At the dinner table obviously, while watchign a video like you saw in the clip, but also after bath time he's just been hanging out in bed with us and he seems very well regulated and calm.

Other than that we are just trying to work on new schedules. The schedule for the study changed this week int hat we now do 1 home visit and 1 community visit. The community visit is a bit tricky for us due to commutes, time restraints, etc. so Carrie and I are working through that best we can. We are also trying to figure out how the new schedule will be when this part of teh study ends and the new part picks up. Lots of coordination going on between school district services, work schedules, study schedules, etc. HOpefully Tyler will take it all in stride.

We are looking forward to family visiting this weekend to learn more about autism and how it specifically relates to Tyler, etc. There will be plenty of time for questions, so please feel free to bring as many questions as you'd like. Thank you Carrie for doing this for us!

05-29-08 Update

Tyler is still acting like he's not 100%, however, we think we have figured out what was going on with him during Thursday's taping because he exhibited some of the same behavior today. Although it may not "look" like it's a good thing on tape, Tyler is beginning to understand behavior and independence, etc. like a typical 2 year old so he's beginning to test us when we put limitations or rules on him. For example, when playing with a puzzle, I make Tyler put all the pieces in before he can pick his favorite one to put in repeatedly to hear his favorite sound. He has to cmoplete the puzzle first, then he can listen to it a few times, and then he has to do the puzzle again. He is not so thrilled with theserules anymore and is starting to tantrum. He also is trantruming when I tell him he can't wash his hands for the 3rd time and he's started to resist taking his dishes to the kitchen. So as much as Tuesday was hard for me, it's great to see that he's beginning ot understand human behavior and how he fits in because there is a huge social and communicative component to all of that. So we are instructed to hold oru ground. When he wanted to wash his hands again today, I said no, all done hands, and offerred him two choices of things to play with and then ignored his behavior after that. Most of today's session was spent with Tyler testing us to see what he could get away with, little stinker.

On another good note, I just received a call from Carrie and she said that Florida State reviewed a parent fidelity tape from 2 weeks ago and said that we are doing a wonderful job of pushing Tyler harder, or uping the ante, and I reached 100% fidelity, yeah! So we'll keep that going forward although it's hard to up the ante on days like today. Carrie wants me to consider more "testing"... let's test the waters and see what we can do. We are slowly moving supports away from Tyler when he's eating, i.e. making him take 2 bites (on his own) before he can loook at his book. Soon we are hoping on well regulated days, he will not need any support at all and will be feeding himself for the most part. The biggest thing we need to work on right now, is getting Tyler to touch things even if he doesnt' want too and we've been working hard on that.

5/28/08 Update

Update on Ben: I know many of you often wonder how Ben fits into the picture and although we don't talk about Ben on this website very often, rest assured Ben gets plenty of attention:) Ben is not aware of Tyler's therapy for the most part and when he is home when we work on things, then he's usually included in what we are doing. Just rememeber, a lot of Tyler's therapy includes play activities or bath time, etc. Ben is included in all of that. OT and speech are at daycare and OT includes Ben in a lot of the activities. Ben also get special time with dad and grandma ever other Saturday when he gets to go somewhere fun. Mommy and Ben have a special night out on a weekly basis so that he can get one on one mommy time, so believe me, Ben is getting plenty of love and attention :) He's probably more lucky than most twins that's for sure. On a health note, Ben had his annual physical with the cardiologist today. He still has a small hole in his heart, but it should not cause a signifnicant impact on his life and they expect it to close by the time he is 6. Just a reminder, if he is ever injured or goes to the dentist, he does require antibiotics to prevent infection to his heart. We go back in 2 years to check on it again, other than that, no problems.

As for Tyler, he was back to normal at dinner time last night so we aren't sure what happend yesterday, maybe he was just worn out. He was really doing well with feeding himself with a fork. We are also anticipating the results of his urine test any day to move forward with his biomedical therapy. Grandma is coming this weekend, yeah.

Mom and Dad are planning a 5 year anniversary get away in July. Aunt Susie will be watching the boys so we are beginning to put supports in place to make sure the transition for Ty ler is easy. She's collecting pictures of her daycare kids, home, camper, etc. so we can start showing Tyler pictuers and talking to him about what he'll be doing and who he'll be seeing. Thse types of things help Tyler deal with changes in his routines.


I have google alerts set to send me any story in the news that talks about "autism"...this story is horrific. All of you can prevent things like this from happening by talkign to people about autism, what it means and teaching tolerance. It's just awful.

Tuesday, May 27, 2008

Kindergarten ASD Student "Voted Out" of class By Peers
St. Lucie teacher reassigned after student 'voted out' of class By Colleen WixonOriginally published 10:12 a.m., May 27, 2008 Updated 06:30 p.m., May 27, 2008PORT ST. LUCIE — Morningside Elementary kindergarten teacher Wendy Portillo has been reassigned until further action may be determined, according to St. Lucie County School District spokeswoman Janice Karst.Last week, Portillo held a vote in her classroom in which kindergarten students "voted out" 5-year-old Alex Barton, who was in the process of being tested for Asperger's Disorder, a type of high-functioning autism. Alex's mother, Melissa Barton, said the vote was taken after classmates were allowed to tell Alex what they didn't like about him.The class voted Alex out of the room, by a 14 to 2 margin.Portillo was reassigned out of the classroom at the district offices on Friday, as soon as Schools Superintendent Michael Lannon heard about the incident, Karst said. She said it could be up to two weeks before the district's investigation on the matter is concluded.Portillo has been a St. Lucie County teacher for 12 years, and at Morningside Elementary for nine, Karst said.Barton said Tuesday morning that Alex had officially been diagnosed with an autism-spectrum disorder and attention deficit and hyperactivity disorder, or ADHD. He is not in school, but misses the one friend he made in the classroom, she said."He's a little better today," she said. "He's just being Alex."Barton said she thinks Portillo should be fired."She has no business being near children at all," she said.As to the news of Portillo being reassigned, Barton responded, "That's just a slap in the face."

This video may look normal to most of you but that's the point... it looks "normal"! Tyler is sitting still... this is unbelievable for him. He never sits still. Even if he wants to sit on your lap, he still squirms, gets up, turns around, wiggles his feet, pushes against you, puts his head into you, turns around one more time, well you get the point. He is sitting still. what's better... he's feeding himself. Which we haev been able to get him to do at the table but often struggle to get him to do in an evironment that he doesn't have to eat, i.e. usually if we tried to give him a snack not at the table and he's hungry, he'll open his mouth but not want to touch the food. And even if he did feed himself, you could only hand him or have available, one piece at a time or he'd play with them all or flick them out of the bowl. Here, he's picking up a piece out of the bowl and eating it while he watches Barney. Hopefully you can all see what a success this is for us!

Last night was no different. He was laying in bed with us after bath time (ben had already went to bed) and he was happy just laying still, drinking milk, dad was rubbing his hair. He didn't have any toys or entertainment, just happy hanging out with us and intereacting like a normal child, i.e. more interested in people than objects. We struggled to put him to bed because we didn't want to lose the moment. It was so precious.

Today however did not go as smoothly. He was fantastic this morning when it was just him and I. Breakfast went well, we are really m oving out the supports and he's doing so well at feeding himself. He's really interactive with books and has been working hard on his pointing. He was chatty and happy. He also did well during Carrie's visit. He's been doing well at allowing us to push him to the point of frustration but maintaining his regulation. We began to work on imagination play today with a feeding a doll and earlier I had worked with him on farm animals and a tractor. However, things took a turn for the worst once it came time for videotaping. I'm a bit concerned with his drastic change that he may have somehow gotten a hold of something he shouldn't have, i.e. gluten. He suddenly seemed sick, runny/puffy eyes, runny nose and very very easily frustrated. I could not push him at all and in fact, things he normally has no trouble doing, i.e. taking his cup to teh kitchen counter, caused meltdowns. It was a rough session and broke my heart. But it was all worth it because we are convinced that Tyler said "I Love you!".... I'm hoping to get a copy of the tape so I can play that clip because he said it twice, after I had said it, and both the videographer and I agreed that is what he said. After a hard days' work, it was great to hear.

I had a really funny clip of Ben to post but for some reason (it's logn) I couldn't get it to work. Ben likes to pretend he has the pic-ups (hiccups) and he and dad were pretending and he had the biggest giggles, it was very funny.

5/23/08

Tyler has come leaps and bounds this week! Starting last Thursday we really started to work on his point as that is one of our new objectives "distal point" many of you may not know that pointing is a form of communication which comes naturally to typically developing children, but can be very tough for children with autism. By dinner on Wednesday, he was showing daddy hew knew how to point at certain pictures in his book at the table. Daddy would piont and Tyler would point. We were so proud. He's also doing really well at feeding himself. We are slowing working to take away the supports we use at the table to get him to eat, blocks, books, etc. and having him use his own utensils and interaction.

I'm just so proud of Tyler. In the last week, he's really come a long way. I'm more and more convinced that the biomedical treatment really helps Tyler's brain take in all the other therapy. The good news is.... we were able to catch all of it on tape during the clinician fidelity taping. So we got him stacking blocks (his OT goal is to stack 6, he did that on video on Thursday), he ate with his own silverware, grabbed his own food, pointed, tried to take off his own pants at bath time, put arms up when I asked him too, engaged in the bathtime song, etc. etc. He is also taking his own plate and cup to teh table before dinner and taking it back to the kitchen after dinner. Most of the time he knid of walks like he's a slave and being forced to do it, (it's funny to see) but last night, Dad said he took his cup to the kitchen, all on his own (i.e. without having to hold his hand and pull him in the kitchen, etc.) dad just handed him the cup and he went and put it on the counter.

As our May consultation, we asked Carrie to work with Steve adn Ben (Tyler was at daycare). Sometimes Steve and Ben have a hard time together or as I think they like to push eachothers buttons. So our Super Nanny Carrie came over to address some of those issues and Steve said it went very well. They also addressed Ben and Dad's bed time routines. Both of them were getting a little too used to "snuggle" time and it was causing more and more issues of Ben waking up and watning attention so beginning last night, that's ending. Dad is no longer allowed to go into Ben's room after he goes to bed and before it's time for the family to get up. Ben had been waking up around midnight and dad would sleep on the couch in his room and then again around 5:30 or 5:45 and dad would go "shhhhhh" him back to sleep. We wake up at 5:20, so we aren't ready for work yet when Ben initially thinks he wants to get up and ahve snuggle time. So we'll just be letting him cry now until he falls back asleep or we are ready to get him up. I'm sure it will be a tough week but in the end, ti's better for all of us because Ben will be in a big boy bed before the end of the year.

Ok, all from us. Hope everything has a happy and safe Memorial Weekend.

P.S> Our June consultation is going to be a session at our house for family and friends to learn more about Tyler's conditino, treatment, outlook, etc. We are thinking about having it on June 8th (sun) sometime between 10 and 12. Let me know if you are interested in attending.

5/20 & 5/21/08 Update

Tuesday:

It looks like the DAN doctor was right! Tyler seems to be back to his self again today. In fact, this morning before therapy, he was seeking out hugs from me. And not just the squeezes I give him for sensory reasons, and not the kind where he's on my lap and spinning around in circles, but real hugs. We were playing with the pop up toy and he just kept looking at me (directly the eyes) and then putting his arms around me and giving me hugs and he held still while we hugged! It was great. I had probably about a good 3 0 - 40 seconds of hugging. I admit, I shed a few tears. I knew my baby was in tehre, and I got to see him today. Yeah. Overall the session went well today. FOr teh most part, Carrie and I went over our objectives, TY ler's latest assessment scores and troubleshooting/planning for current goals.

I think the videotape session went really well today. Tyler did very well at feeding himself independently and although, I did push him to the point of frustration many times today, he never banged his head and I was easily able to move him on to a new task w/o continued crying so I was happy about that. He was making a lot of sounds today too. I hadn't heard Ma-Ma in a couple of weeks and he saying it today. He also said "wa" when we were washing our hands in the water. I'm pretty sure he was saying it for water because he said it when I was saying 'water off" .

Wednesday: We had our evaluation for services at the school district this morning which went well. We agreed to reconvene in July when the study ends to then determine what all additional services we'd like to add for Tyler.

5/19/08 Update

I haven't posted in the last few days because honestly, I've just not had much positive news to report. U of M and Florida State review our tapes and the latest feedback indicates that we need Tyler to do more work, i.e. have more active engagement. This came at time when we found out exactly how much behavioral therapy would cost us as well as finding out that for sure our insurance companies will not cover any of it. So it was just kind of a downer week. I feel Tyler would receive a better benefit from working with a professional rather than me and am still hoping that although we always plan to incorporate behavioral therapy into our day to day activities, that a professional will be working with him come late summer. It's so difficult to really push him when the whole family is together on the weekends. Plus, Tyler was also under the weather this past week and weekend so it was difficult to "up the ante" and keep him engaged in activities. So the things we really need to work on are:

• More active engagement; Tyler to do more work
• More hand over hand signing... we'll make a video soon of all the basic signs we use.
• More independence...carrying food to table, cleaning up table, helping with vacuuming, etc.
• More sensory activities..due to him being tactile defensive

We worked on many of these things this weekend although getting even a "peep" out of Tyler was difficult. Tyler has begun to turn the vac cum on and off and he's helping to push it to put it away. He also is now throwing away his dirty diaper into the bin all on his own and beginning to wash himself in the bathtub.

We also had seen an activity once on "Jon and Kate plus 8" for some edible playdoh type stuff so I found the recipe and we made a GFCF version for the boys to play with this weekend. It's equal parts peanut butter, honey, powdered milk and a bit of flour for texture. We played with this while at the table and it also turned into a snack which was my hope. Both boys liked the taste. It took Ben along time to try it but once he did, he couldn't stop eating it. We made a boat, fish, train tracks, and a turtle. He really liked eating the turtle! Tyler was much More apprehensive about touching it, hence the tactile defensiveness and why we were doing the whole activity. I had a movie on to distract him and just would periodically rub his hands in it and put globs of it in his hands to touch and then would give him a break. I couldn't get him to pick it up on his own to eat it but he would let me eat it. We'll continue this activity and hope that he begins to like it.

The video I included shows me trying to work with Tyler but not being very successful. You can hear Ben yelling in the background which is typically what happens anytime Ben is around and I hold out for Tyler to communicate. Mind you, I had just spent a good 30 minutes doing the sensory activity with both boys, making boats, turtles, etc. with Ben. Then Ben wanted to show Daddy all of the fun stuff he created so I went off to work with Tyler and Steve and Ben were at the table. Anyway, I asked Steve to stop taping so that he could give Ben some attention and I could go back to working with Tyler.

We also have a pretty good bath routine down which includes a fun song that I downloaded into my ipod for the "wheels on the bus" . This really gets Tyler's attention during bath which can be difficult. We have gestures/signs for all of it and go through the song once w/o any pauses and then play the song "one more time" and put in pauses to see if we can get Tyler to speak up and request more music. We also used some finger paint in the tub for sensory issues, he didn't like it but we just had him do it for a few seconds at a time and he seemed to stay pretty calm.

So Steve and I talked and we are trying to rearrange our weekly schedules to make more time on the weekends where I can find ways to be alone with Tyler at home. Usually it's one parent with both boys while the other parent does chores or runs errands. We started this weekend, so Saturday morning, Grandma and Dad took Ben to the The TreeHouse in Chelsea to play while I had some one on one time with Tyler.

From a biomedical standpoint, we started Tyler on digestive enzymes a little over a week ago and we noticed a lot of negative changes at about the same time. WE called his DAN doctor early last week and he was out of theoffice so the nurse referred us to the pediatrician, we had a hunch it was from enzymes so waited until today to call back. We've noticed Tyler to be overregulated or underregulated but very difficult to maintain regulation and engagement. He also has had puffy eyes, clear watery eyes, and bad coloring, but he's been eating great which is an indicator he's not actually sick. He really has a hard time eating when he's sick. So we spoke to the DAN Doctor today who said that everything is completely normal and we can expect a few setbacks as his body adjusts and cleans out the bad stuff but soon we should see him come out of it and make some progress forward. With everything, it's always hard to add a new biomedical step because each time to does take Tyler a while to adjust but we ALWAYS see improvements after that first week or two, so we hang in there.