12-8-2008 Tyler Laptop

Here's the video of Tyler playing with the laptop. This video is very enlightening as it's the first time I noticed everthing around him is alphabet related. The little green square next time has leters you take in and out that makes the letter name and sound. The yellow bus is an alphabet bus with letters all around and then way in the background is an alphabet train, our boy loves his letters! We've been working for a week on learning the letters of the alphabet in sign language. He's doing great. I do hand over hand training for A,B,and C and then go through the rest of the song just showing him the letters. He loves it, and as of this weekend he's starting to watch my fingers and then watch his hands/fingers and trying to make the signs for the other letters. We are going to work on him knowing this as well as he does Lion, Bear, and hat (new sign mastered this weekend without prompting) so we can get him to reqeust it for his favorite toys. He loves his letter puzzle so he can request (MAND) letters for it or MAND letters for his Leap frog or his soon to be Word Wammer, he gets really excited when he gets his letters right.

The other thing I wanted to point out so you could all see what it looks like is "flapping".. it's quick in the video so you may not notice, you may chalk it up to just being excitnig but in essense that's when flapping normally occurs, when they kids get really excited or overstimulated. You'll notice it towards the end of the video as he faces the camera and is excited about his successes, we are too buddy!

We took the boys out to eat this weekend (packed a lunch for Tyler) and we realize it's getting increasingly difficult to go out in public with Tyler, difficult to keep him regulated. I am going to start plan more outtings to unfamiliar places but for short durations to really work on his behavior. He was very resistant to putting on his caot when we left the restaurant. Well there were a lot of things that were difficult but they were all tolerable and just part of the process. We packed a familiar lunch for Tyler so he'd be comfortable eating, we brought lots of toys, some stimmy some not to keep him entertained and then we sat in a booth so that he'd be somewhat enclosed by not strapped in (lots of planning involved. Tyler was very overactive, never sat down (maybe we try the booster chair next time and see if that helps) and was in a constant stage of pushing on me. You'll get that with kids on the spectrum, some can't stand to be touched at all or have anything near them and some long for that deep pressure/touch. Tyler is a mixture of both, some places he needs lots of touch and some places he hates to be touched. But as a parent, it can get very annoyign to have someone constantly pushing into you, walking on you. Until you see it, it's hard to explain. Proper response is to work to give him more deep pressure and teach him a way to request it rather than walking all over us to get it. And to not squeeze him after walking or suddenly he's being reinforced to walk all over you to get what he wants. So much to think about with every aspect of his life.

12/8/08

PLEASE HELP!



AUTISM INSURANCE LEGISLATION
ACTION ALERT
We need YOUR help!Contact House Speaker, Andy Dillon
Andy Dillon,
House Speaker

Contact Information

Phone
(888) 737-3455
or
(517) 373-0857

Fax
(517) 373-5976

E-Mail
andydillon@house.mi.gov

Website
http://house.gov.mi/adillon

Address
166 Capitol Building
PO Box 30014
Lansing, MI 48909
Please Call!

Your one phone call could change the lives of thousands!

In the eyes of House Speaker Andy Dillon your phone call represents 500 people, your written letter represents 200 people, and your e-mail represents 100 people.

Please help us make a difference and take the time to make one phone call!

Sign up to receive updates!

Click the link below to be added to our mailing list.


Greetings!
We need your help! The next step in our fight to get Michigan insurance companies mandated to cover Autism therapy is to have the bills voted on in the House of Representatives.

Please contact House Speaker, Andy Dillon TODAY (Monday, December 8,2008)! He needs to hear that you care about this legislation. Tell him that you want House Bills 5527 & 5529 put to a committee and floor vote immediately!

What do I say when I call?

Above all else, it is important for Andy Dillon to know why this bill is so important to YOU! Besides that, here are some main points you can discuss: 1. The autism community has a cost projection that shows this legislation will likely cost about .50% or less in premiums for policy holders. 2.Individuals with autism are the only group that have no coverage from any source. 3.There is no coverage, not even for the most evidence-based treatments. 4.Individuals with autism get excluded from virtually all insurance policies and the insurance industry has been able to perpetrate this discrimination without repercussion. It is time for this discrimination to stop! 5. Remember to stress why and how this bill will effect your life and the lives of your friends and family! 6.Tell him you want HB 5527 and 5529 to be voted on immediately!


7. Forward to your friends and family asking them to also take action.

"The future depends on what we do in the present."

~Mahatma Gandhi~
Thank you in advance for your support. Please foward this on to your friends and family members and ask them to make a phone call that could really make a difference!

Sincerely,

Autism Insurance in Michigan Committee

12/5/08

They work quickly...preschool has already given us a video of Tyler eating at school so we'll be able to review that and determine what's going on at school vs. home.

And wonderful news in the world of autism insurance..a nother state has joined on board... Illinois now has coverage for autism, Indiana already had a plan in place, hopefully Michigani s not far behind.


Senate Bill 934: Sponsored by Senator James A. DeLeo and Representative Karen May
Requires a group or individual health insurance policy, or managed care plan to provide coverage for the diagnosis and treatment of autism spectrum disorders
Coverage will be provided for a treatment for an autism spectrum disorder will include care prescribed, provided, or ordered for an individual with an autism spectrum disorder by a licensed physician, licenses psychologist, or certified registered nurse practitioner if the care is determined to be medically necessary. Including:
Psychiatric care
Psychological care
Rehabilitative care
Therapeutic care, including speech, occupational, and physical therapy
Pharmacy care
Applied behavior analysis therapy
Any care, treatment, intervention, service or item for individuals with an autism spectrum disorder which is determined by the Department of Health Care and Family Services, based upon its review of best practices or evidenced-based research, to be medically necessary.
Coverage must be provided for an eligible beneficiary under the age of 21
Coverage must be provided up to a maximum benefit of $36,000 per year (will be adjusted for inflation after December 30, 2009)
Coverage is not subject to limits on the number of visits to an autism service provider

120308 Update

Yeah, Steve was able to get video of Tyler playing with the Thomas computer so now we just need to get it downloaded and then upload it here, it's so fun to see! He raelly likes it and holds still while he plays it and chooses to sit at a table during playtime without prompting (like a typical preschooler would). So we like that it helps promote appropriate body positining, etc. We have decided to get both the boys Leapsters for Christmas, as there are some games I really think Tyler would enjoy and once he catches on it will likely allow us to get out in public more with both boys and one parent. It's still quite tough to do as Tyler can get overwhelmed and break down easily, he requires a lot of support which leaves Ben just kind of hanging around adn then competing for that attention so it's tough to accomplish whatever it is that you set out to accomplish. Right now we try to keep tyler happy with play phones, remotes, etc. but it would be great for him to have something for him to focus on that also promotes learning and not stimmy behavior so we are really excited!

Tyler had a great day at school yesterday, but we are getting concerned at his lack of interest of eating at school. he is still a bit under the weather (I'll talk about health later) so I'm not sure how much of an influence that is having but since he goes to school every day and not just once or twice a week, it's important to me that he's getting the proper nutrition, he's such a little guy. I've asked that they videotape him eating at school so we can look at it and help trouble shoot or help give them tips of things we do to keep him eating. They allow parents to come in and watch whenever you'd like but that can often distract the kids adn I know I would be a distractor for Tyler so they also offer videotaping in lieu of being there in person.

We completed his IEP. Just wanted to let everyone in on a few of his goals for the year, I'm really really excited. First let me give you some of the informatino that was listed in his IEP as a summary of his current state.. kind of hard to see on paper even though we know it's true. "Tyler often appears to avoid sensory input in the classroom, decreasing his ability to get all the informatino he needs to participate in activities. The combination of needing additional input yet actively avoiding the input makes programming for Tyler more challenging when finding the balance of what he needs and what he will accept without being overwhelmed with input. In summary, Tyler's low registration and tendancy to avoid input, impact his ability to consistently attend to and participate in learning activities." Now keep in mind that these observations were made witin the first 30 days of school and it takes usually closer to 2 months for skills to generalize so they have since noticed some great immitation skills and such from Tyler but in general, this is his overall struggle. Ok, on to some of the goals.. the IEP is many pages long so i won't list everything.

1) Tyler will use two hands to complete tasks (currently uses 1 hand for most activities).

2) Tyler will complete 3 tasks independently, i.e. put blocks in, then move to puzzle, them move to some other activity. This will also help us at home if we set up systems/routines of activities to do while we are cooking or something (he often tries to pull our hand to help him play while we try to complete normal household stuff). If he has a routine to follow and complete then he can go about those activities (independently) while we complete our tasks.

3) Tyler will eat 10 bites of lunch independently. We are really excited about this one because it would be great if he was an indpendent eater by the time he was 3! It's a big goal though since we already don't think he's eating enough at school, we also had them add in that we want him touching his food more, he avoids contact with it, doesn't mind utensils but not fond of food being on him. In fact, if some food is hanging out of hsi mouth or on his chin, he'll use his teeth, lips, tongue and anything else he can to try to get it in his mouth without having to touch it with his hands.. it's kind of funny to watch.

4) They will start him on the potty training program. This is a long processing following a U of M expert and her program. I haven't read the book yet to fully understand it all but it has to do with charting his wet diapers and getting him used to setting on the toilet.

5) Tyler will follow 10 instructional directions given verbal prompts and pictures, ex: stand up, sit down, come here, stop and throw away. Stop is huge for us in regards to safety concerns and being out in public with both boys as if Tyler was running out in front of a car, and we yelled "stop" right now he would not stop.

6) Tyler will learn 20 new signs for desired objects and will sign for at least 10 desired objects in his sight. He is really enjoying signing and watching us sign for objects, he often requests us to sign for him and no longer resists us doing hand over hand prompting for him to sign. We are working on the alphabet now, he's really doing great and very interested so I'm excited about this goal.

Ok, that's a few of the goals that we are going to be working on in the next year. As we work on goals at school and home, we'll keep everyone in the loop as to the signs, routines, etc. so Tyler will have support in all areas of his life in meeting these goals, i.e. which signs, which toys, proper play, eating skills, etc. Thanks for supporting this and in general when you play with Tyler, always be thinking of ways to promote communication. Example: the boys love it when Steve plays" jump" with them on the bed. I asked Steve to give the game a name so that he can consistenty say do you wanna play "x" and then Tyler can get familiar with the name and hopefuly start to request it or an approximation anyway. Anyway, he has these certain jumpbs he does where he basically throws the boys on the bed and they love it. So this is a great opportunity to get Tyler to make requests because it's very reinforcing. So when he went to do the jump for the third time yesterday with Tyler I said.. pause and wait for Tyler to say "up" which he'll do if you wait for it. Every part of Tylers play or day can be made into a learning opportunity, you just have to constantly be thinking that way.

On to health.. we are all STILL under the weather. Ben was healthy thi sweekend but woke up stuffy today, Tyler and I were the ones that got re-sick last Friday and both of us now have it moving down into our chests so we have coughs. Steve got sick on Sunday and seems to already be getting better.. sigh, is winter over yet?

Ok, that's about all from me. Take care!

12/1/08

Hope everyone had a great Thanksgiving. Ours was fantastic but then Friday, both Tyler and I seemed to take a downward turn on our recovery from our illness that just keeps going on and on and on. So hopefully now we are back on the road to recovery.

On a good note, Tyler was great this weekend! We started teaching him letter signs this weekend and he really really likes it! He asked me to do it repeatedly and the first time I showed him, he was engaged with me for 4 rounds. Also, I sang wheels on the bus to him and I was sitting on the bed and he was just standing on the floor. When I got to the doors open and shut, he signed it all on his own the first time through without prompting. Yeah. Also, Ben got a Thomas the tank engine laptop game last Christmas. There are many activities you can choose in the game. One of them is to find capital or small letters. Tyler was doing this all weekend long. It would say, find the capital letter "a" and Tyler would push A. First I would repeat the question and then I stopped to see if he could follow the computers instructions and he could! He also got a lot of joy out of me and the computer praising him. I love that he's reinforced with social praise, he did not used to be this way.

On another note, we are considering taking him off some of his supplements. We had added about 6 or so in the last 8 weeks and have not seen any improvements in that time. We'll take him off and see if there is any regression, if there is, then we know they were benefiting him, if there is not, we'll most likely leave him off for a while. We fully plan to keep him on the digestive enzymes, multi vitamin, B12 shots (which we've increased to every other day) and melatonin as it helps offset the insomnia that can occur with the B12, but the other stuff we may fade out for a while. It's a costly and it add significant stress trying to get it all in to him every day and sneaking it in food that we don't feel is necessary if it's not benefiting him at all.

Which brings me to another note. I signed up for google news alerts that sends me an email a couple of times a day with articles that have the word autism and recovery in the story. I got two interesting ones over the weekend, one was a blog from a mother. Read it if you have time.

http://mickiesprogress.blogspot.com/2008/11/autism-treatments-come-with-hefty-price.html

The mother of this story ends her blog with , "Recovery comes with a hefty price, so with lots of money it's a real possibility, but without it, it's just a dream."

This is unfortunately so true and one that I said I would never let stand in the way of our goals for Tyler but I realize sometimes that I have no choice. If I had an opportunity to do everything I wanted for Tyler, our picture would be quite different. We'd still have Tyler in preschool as I really believe in the group activities, structured environment, based on verbal behavior teachings. We'd also have a private speech therapist working with him at least 3 times a week, we'd hire a private ABA consultant to work with Tyler in the late afternoon before dinner and we'd do music therapy, HBOT (oxygen treatments), etc. on the weekends with the help of our live in au pair who is has experience with children with autism and wants to get a degree in this type of work. I would do and give every supplement as instructed by the DAN Protocol as long as it's not hurting Tyler, we'd have all of Tyler's food sent to us to make sure he's getting the proper amount of calories, fat, etc. I'd not work so that I could spend the most time with the boys as possible and make sure they both get the love and education that they need. Our basement would be finished and be set up in an environment that promotes social interaction and both fine and gross motor skills. If I had my way, that's what I'd do. I don't want money to stand in the way of his possible recovery and I believe we've made very smart decisions based upon what Tyler needs and what we can swing financially. But I wonder what if.. what if.. I could do everything my heart desired for Tyler, would that be enough? I'll just never know cause we certainly will never have enough to do all those things. I can tell you that there are times I seriously consider moving us to a state where insurance covers treatments (ours doesn't even cover speech until he's 5, no OT, no ABA) where maybe Steve could get a job making just a little more money and I could stay home and make sure everyone had what they needed adn drive Tyler from appt to appt. But for now I feel like we are doing as much as we are financially able to do so we'll see how the next year goes. Which brings me to the next news article.

WPVI-TV Philadelphia Study shows families' financial strain from autism Sunday, November 30, 2008 4:19 PM By LINDSEY TANNER AP Medical Writer CHICAGO (AP) - November 30, 2008 (WPVI) -- More than half a million U.S.children have autism with costly health care needs that often put an unprecedented financial strain on their families, national data show. Compared with parents whose youngsters have chronic health care needs but not autism, those with autistic children are three times more likely to have to quit their jobs or reduce work hours to care for their kids. They pay more for their kids' health needs, spend more time providing or arranging for that care, and are more likely to have money difficulties, the study found."This is the first national survey that looked at the impact on families of having kids with special health care needs," said lead author Michael Kogan,a researcher with the government's Maternal and Child Health Bureau.The results are from a nationally representative 2005-06 survey of nearly40,000 children with special health care needs. These children have a broad range of chronic conditions, including physical and mental illness,requiring more extensive than usual medical care.A total of 2,088 children with special health needs had autism, which translates to about 535,000 kids aged 3 to 17 nationwide, the study author said.The study appears in December's Pediatrics, being released Monday.Autism typically involves poor verbal communication, repetitive behaviors such as head-banging, and avoidance of physical or eye contact. Affected children often need many more types of treatment than kids with other chronic conditions, including speech and behavior therapy and sometimes medication. Kogan said that may explain the disproportionate strain on their families.Jacquie Mace, whose 12-year-old son, Austin, has autism, said the study presents a "very realistic" picture of the challenges affected familiesface.Mace said she spends "easily $15,000 to $20,000 out of pocket" yearly on supplies for behavior treatment she provides for her son. She's still working to pay off a $7,000 bill for dental work Austin had last year. He has to be sedated and hospitalized for dental care because he can't sit still in a chair, Mace explained. Austin's health insurance doesn't cover any of it, she said. Some states require insurers to cover certain autism treatment while similar proposed measures are pending in others, including Illinois. Mace hasn't had to quit her job helping local families find autism resources, but knows of many parents who've had to leave work to care for their autistic kids. She is divorced - another common casualty, she said, of the challenges of caring for autistic kids.

11/25/08

Godbless my guardian angel, Amy!! She sent me the most wonderful message yesterday just before Tyler's IEP appt. It went as follows:

"Set the vision that his IEP two years from now will be transitioning to join Ben in Kindergarten- I know a mom of twins in Manchester who told me the kids 'can't tell her boys apart' in class as they are identical twins...Avery started out as full affected ,nonverbal autistic and now he's fully included and indistinguishable...AMAZING and it CAN HAPPEN!! :0)"

Read that message again....and again....until you all believe in your heart of hearts this can happen for Tyler and our family. Believe when you are with Tyler with all your might that this is his destiny and then let your actions and interactions with Tyler reflect your thoughts. Believing is not enough, Tyler needs actions! If you are visitig with Tyler and you see him pushign a button on a toy repeatedly seeming to be getting lost in his own world, find a way to engage him. Find a way to force him into our world and keep him there as long as you can. I have many many suggestions and will do my best to share this knowledge with everyone who wants to interact with Tyler. Touch Tyler as often as you can, he loves to be tickled on his belly and arms and hands and legs. He also loves to rough house and play chase. It takes an incredible amount of energy to keep him in our world so we'd appreciate all the help we can get!

So anyway, that's how I went into the IEP meeting, with the mindset that Tyler can and very will may be in a regular kindergareden class right along side Ben! How amazing would it be to see those two really playing, laughing and talking together!!! I can't wait for that day, just can't wait. So we set some pretty high goals for Tyler, in some cases, increasing the goals to higher levels as we believe Tyler could meet some of the goals fairly soon so we wanted ot make sure we set goals that were appropriate for an annual basis. It generally takes 1 - 2 months for skills to generalize into new areas/surrondings. Tyler's only been in school for a month and for a week out of that month he was absent due to illness so they weren't fully aware of all of his skills yet. I'll get into more details as to his goals when we get our first feedback. They provide a report on amonthly basis as to where Tyler is on his goals. They also monitor his regression after each break, such a christmas and spring break, etc. and then track how long it takes to get him back at the level he was at.

The teacher commented yesterday how they do a monster game in class and she tries to get the students to imitate her by raising their hand which indicates they want a monster. Tyler had never raised his hand before, but yesterday, he was the first to raise his hand to get a monster. He's really beginning to follow the routines and we discussed ways to help keep him engaged and be more independent. He's also just beginnning to sign "bear" independently and seems pretty proud of himself for doing.

Last night I began fading back the video reinforcer during meals. I was alone for dinner with the boys so I was trying to find a way to make sure Ben was super happy and busy so taht if Tyler got upset that Ben wouldn't also act out for attention. So Ben watched Gadagascar while I worked on meal time with Tyler. He did great. He ate for about 5 - 6 mins without any support other than me talking to him and signing with him, etc. Then he started to get restless so we added in some books for supports and towards the end of the meal we did need to add his alphabet/music toy, however, he was very patient with me when I'd take the toy away and make him stab his own food and feed himself with the fork before he got the toy back. He didn't' get upset at all at this demand. So we are gonna keep this plan for a while.. put in a video that Tyler doesn't care about so that it's not a reinforcer but one that Ben really really likes so we can make sure Ben is happy and then slowly but surely fade out the other prompts we've used to keep Tyler sitting.....Who knew that it would have taken him nearly 3 years to feed himself but that's my goal. By age 3 Tyler will be sitting on the big table with the rest of the family, without any type of restraint, and he will be able to eat his meal entirely on his own with the only support begin family interaction, i.e. singing and signing.... :)

11/21/08

So a quick update on the study. The lead investigator asked that we continue with the monthly assessments and the full assessment battery at what would be the end of the study for him in May. They are being flexible working around days where Tyler doesn't have school to schedule this appointments, so we were happy to help out. So looks like we aren't going to fully drop out anyway.

So we are gearing up to complete Tyler's first IEP (individualized education plan) for preschool. We are so lucky to be in such a supportive and knowledgeable school district as many parents often complain about how grueling this process can be. all the parents I've spoken too have had wonderful experiences with AAPS. This basically sets the stage for educators, therapists, and parents to agree upon what educational services are appropriate for Tyler and what goals we'd like him to achieve within in a certain time frame. Obviously our main concerns are Tyler's lack of vocal communication, his inability to hold/sit still, and his texture issues which I believe is what prevents him from eating independently.

You all are probably more knowledgeable about autism than the general population, many people think that everyone with autism is like rain main which isn't true, each person is very very different and only a small part of the autism population are considered "savants".. however I do always find it fascinating, those who are thought to have had autism such as Einstein and Newton. Here's a video of brief overview of the connection between Einstein and autism. http://livingwithautism.magnify.net/video/Einstein-The-Autism-Connectio What I like hearing in here is that Einstein didn't' speak til he was 4, OK, i don't "like' hearing that, however, people always says to us, "is he talking yet?"... I say no and they look disappointed, but I'm not. I mean yeah, I really want him to talk but he's come so far in terms of communication, it's just hard to explain that to people who do not fully understand all the steps of communication that must occur before talking can occur. Mind you, Tyler can understand A LOT of words and phrases. If I say, Tyler pick up your blanket, he will. In the car yesterday, I handed him back a piece of cookie and said, "Tyler, want cookie" and he looked when I said his name and cookie and grabbed it. Before he never would have even looked when I talked to him, I'd have to keep touching him until I got his attention and then find a way to get his attention to my hand so he could see the food cause he didn't understand food words, now he does. I'm also still amazed at how quickly he learned colors, alphabet, and numbers. He's such a quick quick learner.. I can't wait for the day that he has better communication skills because I really think he has above average intelligence.

Here's a quick video of the boys playing with trains. Tyler is starting to like trains too.. yeah, parallel play. In fact, if you listen, it's Tyler who has the giggles... a far cry from the boy spinning wheels in the corner, emotion and expressionless!