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!