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.

5/15/08

News on the Hearing 5/14/08:
Just to show you how important "pressure" is, here is what Crain's Business said about this hearing:"Sen. Tom George, R-Kalamazoo, said he called the hearing on mandates after receiving many requests for bills from special-interest groups."

THANK YOU TO EVERYONE WHO SENT EMAILS ON TYLER'S BEHALF!!!! A special thanks to Steve's mom and Grandma for attending the hearing to support our little guy!

Autism Speaks organized the speakers at the hearing and also are really emphasizing the "discrimination" aspect of the lack of autism insurance. One mother explained how her one son who was mildly speech delayed qualified for speech therapy funded by insurance. Her child with autism, however, did not qualify due to the diagnosis. I myself, received official word about whether or not ABA therapy would be covered through Tyler via our health insurance. I already knew that answer would be no but the HR person said she'd look into it. Here was the official response:

She said it's considered experimental / investigative so is not covered as of yet. It has not been established long enough to determine the long range effectiveness at this point.

I'm not sure how many years something is considered investigative or experiemental before they come to a conclusion that it works but, in a landmark 1987 study found that nearly half (47%) of the children who received 40 hours per week of ABA therapy were eventually able to complete normal first-grade classes and achieved normal intellectual and educational functioning by the end of first grade. While none of children who received the therapy only 10 hours per week were able to do the same. There was a mother at the hearing last night who had a Masters in Business (found out the whole story from Carrie) and quit her job to become a behavioral analyst so she could help her son with his fight with autism. Her son is now 11 and considered recovered. So there is also plenty of data to support that the long range effectiveness of ABA therapy. Please continue to join us in our battle for autism insurance coverage. Each day is significant!

Here is a quick video for anyone that needs a reminder of how a bill becomes a law. I majored in Policital Science in college and still needed to refresh my brain so don't feel bad if you don't know how it all works.

http://www.youtube.com/watch?v=mEJL2Uuv-oQ

Therapy: Tyler said "down" at the appropriate time durign Ring Around the Rosie on Monday during his evaluation! He also said "ball" today when we were reviewing a videotaped session. Tyler was very interested in watching the tapes too and said "ball" when we talked about it on the video, same with ring around the rosie.

Health wise, he seems to be having some allergy issues which we are keeping our eye on. Whenever we start anythign new with him we try to watch for anything abnormal and he's been having runny/watery eyes and they've been puffy and he has a bit of a cough. It's a rare day that he's fully healthy (which really leads me to believe the biomedical theory of autism) which then makes it hard for him to take in everything he's supposed to be learning in his enviroment, because he just doesn't feel good most the time. Hopefuly when we'll get the results from his urine test soon and be able to get moving on whatever else we need to do.

5/9/08 Apology and Inspiring Video

I'd first like to apologize to my mom who attended the autism rally as well and I accidentally deleted her name from the email I sent out thanking the attendees. So sorry Mom, thank you so much!

I also wanted to let you know I contacted the gentleman who commented in the blog about his son's status. HE sent me a video of his child which then prompted me to watch other videos. THere are so many recovery stories out there it's very inspiring. Anyway, I found this one to be paticularly inspiring so I wanted to share. Just a warning, it starts out a bit graphic.

http://www.youtube.com/watch?v=aEw0Y5LJ6vg&feature=related

05/08/09 Urgent Insurance Update

BREAKING NEWS!!!!! HEARING IN THE SENATE!!!!!
We have just learned that Senator George has scheduled a hearing for all of the insurance mandates (including autism insurance) for this Wednesday, May 14 at 3 p.m. It will be held in Boji Tower (tallest building with clock on it) in Lansing, near the Capitol building, in the Senate Hearing Room.
WE NEED YOU THERE!!!BRING SIGNS THAT SAY "AUTISM"WE WILL HAVE EXTRA SIGNSIt is IMPERATIVE that we show up with as many people as possible to this hearing, showing that autism insurance coverage is SO important, that not only do we want this legislation passed (separate from all the other mandates), but that we need our own separate hearing!
We know this is short notice - and you were just in Lansing - but it is good news that this hearing was moved up (we were originally told "fall"). I truly believe it was our presence at the rally in Lansing that pushed this to the front! So, we need to do it again! Show them we MUST be heard!!PLEASE COME AND BRING AS MANY PEOPLE AS YOU POSSIBLY CAN!!!!!!SEE YOU IN LANSING THIS WED., MAY 14th
Please, go to www.autisminsurancemi.blogspot.com for updates as they become available.

5/5/08 Update

If anyone is interested in learning more about the biomedical treatment of autism, there is a teleconference next Wednesday at 8:30 p.m. Eastern time. I plan on calling in since the boys will be in bed by now. Attached is the website you can register online and they send you the course materials. http://www.innovativehealing.com/teleconferences It's free, they just give you a phone number and password to join the call. We are just in the beginning stages still with the biomedical treatment and I know we aren't always able to answer all of your questions, so if you'd like to learn more from an expert, this would be a great opportunity. We have received our first set of enzymes in the mail for Tyler which we are to give him at meal time so we hope to start that program tommorrow. We have to wait until Sunday p.m. to re-do the urine test becuase they can only pick it up Mon - Wed. That will let us know what else we need to put Tyler on/or remove from his diet. If any of you noticed, there is a comment in my last blog update from someone in the UK who says that their son has been on biomedical treatment for 2 years and cannot be distinguished from his peers in the public school due to the success of the treatments. Read his brief comment, it'ts very uplifting and could not have come at a better time.

Both boys received successful haircuts from mom last night, without any problems. Dad bought some new (quiet) clippers and they let me clip away. They are so cute. I didn't get a chacne to get a picture of the two of them however, it was a busy morning.

Both boys went to floor time and Ben did great on sharing time and sharing mom. Tyler was easily frustrated today but in a good mood. Hard to explain. They are both getting really good walking and holding mommy's hand. We got back home around 10:00 and it was time for Carrie's visit. We were videotaped today as well. We worked on snack time and did a lot of hand over hand signing for Tyler and a lot of song singing for Ben. I tried to do songs that Ben would like that woudl allow me to make gestures for Tyler's benefit.. tricky.. because Ben doesn't like some of those songs like itsy bitsy spider and asks me to stop singing. We then moved on to bathtime and that routine is also coming along well. Both boys are helping to take off their clothes, Ben is a little more independent in this area than Tyler. And both boys carry their bucket o' towels into the bathroom which helps give them another independent task during bathtime. We wash hair and body and then move on to song routines/free play, then bubbles while water is draining and then exit from tub. All of these steps help Tyler transition out of the tub which is hard for him since he loves the water so much.

Today, however, we had to do an emergency exit from the tub since Tyler decided to go poo, which lead to a melt down on Tyler's part. He did however recover quickly and never once partcipated in any self stimmulating behaviors such as head banging or teeth gritting, etc. He just cried. So it's good because although he was frustrated, he acted appropriately on that frustration. From that point on we tried a few other activities, ball, parade, but really didn't get to spend much time on those things.

Tomorrow, the new speech therapist is going to daycare (after our morning U of M clinic session) so Tyler can spend a little more time with her before we start therapy and to get used to the daycare surroundings as that is where we intend to have sessions at least in the short term. Her name is Lisa and I'm really excited to get moving on speech again.

Tyler has one of his monthly evaluations next Monday at the University of Michigan and then another school district evaluation on the 21st. Lots of evaluations going on.


Here are Tyler's current objectives/goals:

• Child follows the reference of another person's point at a distance (3-5ft) by turning the head and directing gaze or getting tan object wher the persoin is pointing at least 2 times.
• Child follows a simple instruction with at least two different gestural cues other than a point (i.e. "come here" wth open arms or "give me" with palm out.
• Child uses at least three different distal gestures that are conventional (wave, clap, distal reach distal point, head shake) in that they have shared meaning that is widely recognized.
• Child follows a simple instruction in a fmailiar routine with a tleast two different situational cues (i.e. partner says "wash hands" when standing in front of hte sink and child holsds out hands under faucet).
• Child uses at least two different vocalizations that must included a vowel sound and may also include a consonant sound that procedes or follows the vowel.

Tyler mastered so many skills the last time, it' s too much to type so I'll just give an update on the number, to date, 16 mastered skills and I've mastered 19 so between us we've mastered 35 skills! All of my goals are of course to support his so really they are all Tyler's goals :)

050708 Update

Tyler and I both mastered more goals last week so we have some new goals established. I do not have them with me but I'll hopefully share them with you tomorrow. We received some good feedback as to our successes but also were told in a nice way that we both need to work harder. Florida State reviewed our parent fidelity tapes (Tyler and I are taped weekly) and also the clinician fidelity tapes (Carrie is also taped weekly) and they want us to push Tyler harder. We need to do less and make Tyler do more, i.e. when we play parade, Tyler, although engaged, has chosen recently to not actually go around the circle. We've begun to kind of gently force him to go around at least 1/2 turn at a time. We also need to continue to up the ante and find ways to keep Tyler just a little frustrated but while maintaining regulation. I'll be honest, this feedback added to the mommy guilt I already feel. Although Carrie and the study have been a true blessing for the family, I look forward to the fall when we hopefully have more people involved in Tyler's therapy. I'm being pulled in so many different directions during the week that I"m finding it nearly impossible to ever "up the ante" and push Tyler harder. We do work on our routines and you can really implement strategies that we've learned in all of Tyler's day, however, pushing him with everything else going on is hard. For example.... when taking the boy s for a walk in the stroller, I'll stop, to try to get a requeste for Tyler to gesture "go" or make some sort of vocal sound to indicate go. This requires a long pause on my part.. When I do this with Ben in the stroller, Ben immediately, says "go", stuck, etc. adn then doesn't understand why I'm not going. Then I explain we are waiting for Tyler to say go. I explained my concerns to Carrie and how I feel I'm not doing enough for Tyler and she said this is common complaint with parents of a child with autism, especially when there is more than one child involved and both parents work, etc. There are times I see Tyler doing or working in a way that I should stop him or redirect him and I can' t because Ben is needing my attention at that time or I'm cooking dinner, laundry, etc. It's a struggle because most parents are free to do chores, etc. when their kids are playing happily, but even if Tyler is happy doing something, it may not be an appropriate way to play and as much as possible I should be helping him.



We still have plans in the works for bringing on a behavioral analyst in the fall. I'm waiting to receive her paperwork in the mail and am waiting to hear back from HR on the benefit side of things. I have a few possible tricks up my sleeve in terms of way to get funding and to find a way to afford all of it. This is the reason the rally was so important. I can't imagine how much money a family would need to make to afford $2500 a week for just one type of therapy but it's ridiculous that we even have to consider paying it out of pocket. We are hoping beyond hope that the bills will get passed (first they ahve to be brought to a vote, which has not happend) and we can get at least this portion of his therapy covered. The biomedical stuff is not covered and can also be hundreds of dollars a month. For example, the urine test we did on Tyler last night is $130.00. THe first one came back inconclusive and we are still waiting for a refund on that one. HIs b12 is $100 a month and we've just purchased what is the beginning of the other vitamins for him which is where the costs can add up. Oh, and we spend $200.00 a month in just rice milk and formula to make sure the skinny minnies are getting as much nutrients as possible. Yes, the formula is casein free. We are lucky in that the OT and Speech are both offerred through the school district so we dno't have to pay for any of that :)

Please don't feel sorry for us, I'm writing this so you can see how important those health bills are and if you can find a way to make sure your representatives can push these bills through it would be greatly appreciated!!!! If you knew the success stories we know or saw for your own eyes some of hte kids who have recovered, you'd be astonished. http://www.dailytribune.com/stories/010708/loc_autism.shtml This article is about Justin Harlan who is the son of STephanie Harlan who is the director at the Judson Center. They both spoke at the rally. Justin has also spoke on the floor at the capital. He's only 11! He is amazing, a true success story. Not all kids have this much success, in fact, few do. We are not ignorant, we know the chances for a full recovery (i.e. no longer fit autism diagnosis) are slim, but when there is a chance, no matter how small, how can we deny Tyler that chance. I can't and I won't. So again, I'll apologize for our lack of involvement in the next few years with family and friends. We may not have extra money for presents at Christmas, or remember to buy birthday cards or be able to attend family functions. Our neighbors are probably tired of looking at our overgrown/weed ridden lawn, but all of that just seems so insignificant in the big picture. So please do what you can to support those bills. It's the biggest thing you can do to help our family.

Happy Cinco de Mayo

Happy Cinco De Mayo. Here is a video clip we took a couple of weeks ago when we took the boys to the inflatable place. We must have taken this one early into the session because Tyler can very easily climb the ladder and go down the slide on his own, although he goes on my lap in this video. The boys had such a good time last time, they went again this weekend. And were going up and down the the ladder and slide all by themselves! Such big boys now. Grandma had a ball too :)

There isn't much new news to report for Tyler. The month of April was rough for us with the flu, colds, and then Steve and I being out of town part of it, it just seemed difficult for us to get ahead. We are looking forward to May and really moving forward on Tyler's progress. Starting in June we only see Carrie twice a week so I want to take advantage of all of the time with her that we have! Since the weather is turning, we have begun to work on things we can do with Tyler outside. It is very difficult to get and then keep Tyler engaged outdoors, one reason is because you can't necessarily control the environment, i.e. toys, etc. And two, there are so many sights, sounds, smells, etc. it's very overwhelming from a sensory standpoint. So we'll be working on those things as the weather permits. Ben will also be joining Tyler and i this week in floor time on Thursday and our session with Carrie. We'll work on snack, bath, and hopefully either "chase" or stroller ride.

I briefly met wth the speech therapist last week and am really looking forward to working with her. She seems wonderful and really interested in ways they can help support Tyler's goals from the study. Also, small world, I used to work with her sister in law at my last job. We are just waiting on a time for all of us to get together (speech, OT, U of M, me, Tyler) to discuss ways to work together and then we'll schedule weekly sessions.

P.S. Ben used the big boy potty on Friday! He went poo poo and when he was done he looked at it and said "ewwww gross" and then later in the day, he went pee-pee. He's getting to be such a big boy. His new favorite song is "hey diddle, diddle" which he can recite the entire way through. He's really funny.

05/01/08 Finally we have video

So this is only a short clip but at least we were finally able to get one out there so you guys can see how we work with Tyler. This was actually a video of what is called a "play sample" which is done monthly has part of Tyler's monthly evaulations to take data on his progress. Steve actually takes him to the other assessments, but the play sample has to be done by the main caretaker, i.e. the person involved in the study so Tyler and I do this portion of the evaluation in the clinic. This is also the same room that Tyler and I visit every Friday morning. The toys you see on the table and the ones Tyler is working with are only used for the evaluation purposes and taken away after testing, but there are plenty of other fun things to do in the clinic.

This clip is only 2 minutes long but there is a lot that can be learned from it. Prior to the study, not only did Tyler have a hard time playing with cars appropriately (he would flip them and spin the wheels) but he certainly did not care or necessarily want anyone to play with him. As you will see in this clip, he's very intersted in having mom play cars with him. The beginning of the routine we start off with very simple requests and gradually work up to (not sure if the video went this far or not) waiting for sounds and eye contact. There are many other mastered skills shown in the video that you may not pick up on, For example, me pointing to somthing and saying "tyler look", he never used to look when I pointed. Or me helping Tyler with his receptive language by saying "bring me car" which he was going to do anyway so he just helps him learn the phrase. Same as "go get car". Prior to the study, Tyler basically made little to no sounds, certainly didn't make sounds as a request for anything. As you'll notice in the video, he's making sounds to get me to push the car. I do give him a few free "pushes" to make sure he stays regulated and engaged in the activity and doesn't get overly frustrated.

I'm so glad you all get to finally see these videos. Don't forget that communication develops in many many steps and most kids just do it so quickly you don't notice all the steps. We have to teach Tyler each step so try to remember back to Tyler last summer. He was happy doing his own thing, didn't want you to participate in really anything and didn't care if you came or went and now look at him. He's so amazing!