Please contact your local senator today! The autism bill has one last chance tomorrow to make its way through the senate, please let them know why you support this bill. Premiums will go up less than 1 % but the overall life long savings is huge due to the advancement that can be made in this kids with early intervention, they will require less services from the staet when they are adults. Call, email, do whatever you can. PLEASE! I cannot begin to tell you the emotional, physical, and financial burden we've had to deal with because of the lack of insurance coverage. We need your help!

We worked quite a bit with TYler this weekend on using writing utensils. We looked for creative ways to get him interested. A friend loaned us a stylus with a sponge tip that can be used on the IPAD. Attached is a picture of Tyler which shows him using it. one of his goals on his IEP is to write a few letters. I'm thinking if I cna get him to master this skill with electronics where he is motivatated, we can transfer it over to pencil and paper. I Also puleld back out an old leap frog toy where you draw shapes, he still needs help but he's very motivated, keeps bringing it to me to play with him. In general, he was very much a mama's boy over this Thanksgiving break.

Gotta go, please call and advocate for insurance.

11/23/10

Here is some more info on Tyler's goals for this year:

Goal: Improve visual-fine motor skills to increase independence and participation in classroom activities as measured by progress int eh following objectives:
1. Tyler will trace TLE using a small piece of crayon
2. With sciossors (left handed), Tyler will cut a 2" line independently

Goal: will increase independence and participation in activities of daily living, self-care as mewasured progress on the following objectives:
1. Tyler will stay dry all day
2. Tyler wil complete arrival and departure routines

Goal: Tyler will improve his social behavior and play skills:
1. Tyler will follow a peer and imiate their behavior
2. Tyler will make requests to peers
3. Tyler will respond to request by peers.
4. Tyler will initiate a social bid to a peer by giving them an object or by using a communicative gesture (tapping on shoulder, taking hand, using voice output communication).

To improve listener responder skills:
1. Tyler will identify two compontent noun-verbal and verb-noun combinations
2. Tyler will follow directions to "go get" and to "give to" various people and objects in his environment

Goal: Tyler will improve expressive communication:
1. Tyler will use voice output communication or PECs to make requests during activities through his day.
2. Tyler will use voice output communication or PECs to respond to questions, a) what b) where c) who
3. Tyler will use voice output communication or PECs to make choices/requests, to respond to questions, adn to indicate he wants a turn during group and paired activities.
4. TYler will produce sounds within his repertoire on command, imiate vowel/consonant sounds, and ebprompted to produce word approxmiations.

Goal: Tyler will improve his pre-academic skills related to reading and mathmatics
1. Tyler will answer questions or use phrases related to a story.
2. Tyler will sequnce three pictures to retell a simple story
3. Tyelr will improve his numerical concept developmetn as demonstrated by giving a requested number fo items from a group of ten/telling how many items are in a group up to 10.


He has lots of work to do :)

11/21/2010

I really wish I had more time to update the blog. So many good things are going on and I just can't find time to make updates.

Tyler is fantastic lately, he's trying new foods, making all kinds of sounds on demand, and thriving in school. He's really a delight to be around lately.

In terms of speech, I swear he said the first part of "uh, oh" yesterday. He'll say Ba ba ba ba on command. I spent $80 dollars last year on an advocate to have just one consonant sound be added to his IEP. Now anytime you ask, he'll say it, he'll also say mmmmmm and ma ma mam and then point at me. Yes my heart melts each time. He'll say dada sometimes too. He knows who we all are.

I am so thankful for our IPAD, it really helped open up a lot of people's eyes as to Tyler's capabilities and it also has become family member in terms of helping Tyler get through stressful situations like grocery stores, doctors, restaurant, etc. Oh speaking of which, we know longer have to put Tyler in a higher chair at a restaurant! Previously we could not keep him sitting if he wasn't in a chair but now we can get a booth and he'll sit still. As soon as he stands up as soon as I say, sit down, he does. He's really doing great. back to the ipad, i occasionally take the boys to the gym with me as t hey have a fantastic child care facility, and one girl who works there on the weekends knows Tyler because she worked at Splash camp a few years ago, she's getting her masters in autism. Anyway, one time when I was taking the boys in, Tyler was a bit resistant. I asked Ben if anything happend last time they were there ( I love Ben for being able to talk for Tyler!!!) and he said Tyler got upset that they wouldn't let him play on the computer. So I thought, I'll show them... next time we went in, Tyler brought his IPAD with him so they could see all that he's capable of. they were blown away. In the time it took me to go up and pay for the kids and come back they were already asking me a bunch of questinos about it. My response...just let Ty show you!

He's been doing good in speech too, Grandpa takes him each Monday, THANK YOU GRANDPA! Steve started a new job and thanks to layoffs, I'm doing the job of 4 ppl so we are so strapped for time and then the commute and both boys being on opposite sides of Ann Arbor, well we are just really running thing so Grandpa is a life saver. Anyway, speech has really noticed when Tyler does and does not have his B12 shots! Felt bad last week, we both tried the night before and the morning of speech to get him his overdue shot but the little bugger is on to us. You have to remember, he's had these shots since he was 18 months old. We tried the suckers but didn't see the same effects and we also don' t get the same effects through oral medication so shots it is. Oh and can't remember if i mentioned or not but we found an amazing pediatrician who wrote a script for music therapy (meaning flex spending can be used) and for B12 shots. very very rare for main stream pediatricians to do this, apprently I made a very good argument. nad he was great with boys. Really followed Tyler around during the check up and got into whatever position he needed to, to check the ears, heart, etc. And was patient with us finding ways to help Tyler through it. Ty hates his ears touched let alone someone pulling on them to look inside. Doc was so patient and took all the time ijn the world with us, he's phenominal!

Oh back to shots, so speech notices a difference when he does and doesn't have them. We used to give them around bath time bu tthen he started screaming anytime the water was running, to this day we still have to bathe him in the other bathroom, tried it at dinner but anytime his pantws are pulled down he freaks and then we'd sometime sneak it in at diaper which comes our next problem. Tyler already has a bit of issue with his diaper being off and hands wandering but when he thinks a shot is coming it's holy hell war to get him cleaned up. Found myself the other day negatively reinforcing something I should have been positively reinforcing ( on the potty). Not fun and a long not pretty story so I'll refrain from sharing, we'd all be happy giving up those damn expensive pain in the ass (literally) shots but when even therapists are noticing a difference, we must keep them.

OK onto IEP. This year was so much different than last year. I felt i had to pull tooth and nail to get them to recognize Tyler's skills and capabilities and this year, completley differnet! Tyler now has a communication device at school! We had an AT mtg a few backs that was great, so many ppl vying for Ty. He's blowing through his goals and they put new goals for the device in his IEP (unheard of last year) and he's already starting them. Already categorizing, like being able to put an Orange in a fruit category. In fact he had to go through his 3 year assessment for reevaluation of service and they had his PECS book and his Dynavox there in case he wanted to communicate and during the free play part of the ADOS test he looked around and didn't see toys he was interested in so he want to his dynavox scrolled through multiple pages to find his gears and made the sentence I want gears... at which piont his teacher and the evaluator said they had to get him his gears since he was so smart to use his new device to ask for them. Everyone says how smart he is and he just flies through the technology that they give him. I'm really excitged abou this future potential.

oh and in case i didn't mention this before, he received a grant for music threapy! We'll start next semester. We also are goign to hire a private music therapist and will have a mtg soon to just get to know eachother essentially. We hope our lives will slow down a bit late next winter when we can get this up and running on a weekly basis.

I'll write more later on his specific IEP goals but just know that he's doing phenominal!

10/16/10

Hello!!

A few weeks ago I posted on facebook that I needed a good sign. Something to let me know that I was making the right decisions. That night I ended up in the ER, hmmm, not the sign I had in mind, however, within just a few days the good news started to pour in, so now I know... our decisions as of late are the best for the family and there are more good things to come for us, yeah. I have so much good news to report that I'm afraid I may forget some of it.

We had an assistive technology meeting for Tyler the week before last. HIs teacher was the one pushing for another meeting (love it). THere were 10 ppl in the conferfence room, right away I loved that tyler was important enough to the district to have that many people in attendance. Two of the women in attendance were from the district and there were speech pathologists with a lot of experience with augmentive communication devices. I gave a brief opening of Tyler's history as only 1 person in teh room (OT) had been with Tyler since he joined the school. The woman from the district were blown away by TYler's potential as to what I told them and his teacher confirmed. They used a word for him that I can' t remember but that basically labelled him teaching himself to read. Everyone was in agreement he is a great candidate for a communhcation device and they immediately reserved one for him in the district. That set the stage for setting up goals for Ty. At first someone mentioned 5 communicative functions on the device (details will follow later) and then his teacher said, well how about 10? Hee hee, I actually mouthed "i love you" she's a big believer that motiviation has been Tyler's issue in the past, and that he very much is quite aware and knows what he's doing and it just needs to be pushed a little and with the introduction of electronics into the classroom, he's much more interested and engaged. oh that's a good story too, let me finish this one. Ty is gettign a device from the district which will be rented of sorts (we don' t pay) that can come home as well. Can't wait for him to get it, school wills how him how to use it. It's a dynavox.

Ok Ty's class this year is a joint classroom but the second classroom is sort of the more engaged and involved kids. Well they made a decision last week to have Tyler start his day in that classroom. They say there is a huge difference between last year and this year and he responds and stays engaged in circle time, makes choices, etc. This is very exciting. Also he has a new speech therapist this year and she voluntarily asked if she could go watch the private speech therapist work with Ty so they could work as a team, yeah, of course! She went last week. oh and big thanks to grandpa who takes Tyler to speech for us every Monday!

Oh..... we love the ACC, one of TYler's guardian angels, AMy works at the ACC. she called me the other day to tell me Tyler was awareded a scholarship (10 weeks) of one on one music therapy, yipeeee!! Right now we are just tryinh to work through scheduling issues. This bought me tijme to find a pediatrician...

and voila.. found a great one. Someone told me of an office that is great but they run sort of a lottery and you have to call at the beginning of the month and try to be one of the patients they accept as new. I called and got in. Upon their advice, yippee, they set up a "see if it's a good fit" meeting with the parent. Perfect for me because I had some pretty specific questions. 1) will you write a script for music therapy and 2) will you write a script for B12 shots so we no longer need a DAN doctor (this is the one that concerned me). Had the meeting this week and it went great! I loved the doctor, he was very open minded and really listened to everything and answered all of my questions great. He did tell me that he needed to talk to his partner abou tthe shots and get back to me. He called me the next day and said they'd do it! So the boys have an appt there coming up soon just so the doc can see them while they are healthy and get to know them, etc. I'm so excited and love the practice, it seems like a perfect fit.

Ok, I think that's all, I'm sure i"m forgetting something. Lots more news to report soon, lots of going on in our personal lives as well. Ben is phenominal honestly, loves his school and never wants to leave, very happy with the way things are turning out.

xoxoxo

October 2, 2010

We had our first parent/teacher meeting for Tyler and it was fantastic. As a reminder, this year the level one classrooms are joined and each room has unique stations, they are joined in the bathroom area. THe second classroom is set up for more dramatic play and helps the children get ready for a level 2 class. There are 3 levels of autism classrooms in the school, Level 1 is the most impaired and level 3 is the least impaired. Tyler is still in a level 1 room at this point.

His 'homeroom" teacher is Julie who used to be the speech person for the district. I spoke to hear at the open house about TYler's speech and where we shoudl focus energy, etc. and she pointed out that speech is a priority in the classroom so that made me very happy.

ANyway, back to the meeting. The teachers commented on how smart TYler is and how quickly he picks up on things and how different he looks compared to last year. THey said during circle time he's participating in all of the activities and making sure that people are watching him when last year he seemed uninterested and would only participate part of the time. They are also open to communication devices and are bringing more technology into the classroom. They currently are using an IPAD and an Itouch and also bring in a TOBY to circle time which is a communication device. We have another IEP meeting coming up in October where we will revisit his goals for the year and it was discussed that we will put a communication device into part of his goals. At this point, he still uses PECS at school and theys aid he's doing great with PECs. THey basically said whatever we choose, Tyler should have no problem picking it up since he's such a bright kid. Can you imagine, Tyler having an effective way to communicate! THey teachers did ask how we communciate with him at home and to be honest I struggled to answer. IT's a combination of things but for the most part I don' t have trouble. I know what he awnts most of hte time and also know when he's upset and why. I completely understand why other people have trouble but I pretty much understand Tyler unless he wakes up screaming in the middle of the night then I'm usually clueless. I'm so excited though that everyone is open to the idea of him getting something to help him communicate with the rest of the world. So great news on the school front, he's doing awesome.

IN terms of a pediatrician, I found an office that I think we are oing to like and will work with us on biomed scripts as well. I have an appt with the pediatrician next week to see if it's a good fit (no kids at this appt), that alone excited me. That the office as part of their standard practice has the time to meet with parents first to see if it will be a good fit prior to meeting the children, etc. I can discuss all of my questions at this time and hope that they'll prescribe music therapy, yipee!

Tyler starts back up on private speech lessons next week. We struggled to find a way to have him fit into her schedule that matched a time in our schedule when we could get away from work. Tyler is very lucky to have fantastic grandparents.... grandpa is going to be taking Tyler to speech for us starting next week. THANKS GRANDPA! I'm hoping once we get approved for music therapy and get something on the schedule that we can reduce private speech to 2 x per month and music therapy 2 x per month. Insurance won' t cover any of it but flex spending will and I can't afford to flex spend both so I'm hoping to share the $$. Thinking since speech is more a focus at school this year that he may be able to do less private speech and then do something he really enjoys, music!. This paticular music therapist, I've been in talks with for years, it's just we've never found a way to pay for it before. He starts with the piano which is TY's fav of course.

Ben is flourishing at his new school and we are so so so so so so happy we made the change. He's such fun to be around, what a great age.

A while back I commented that we are making changes to simplify our lives and without getting into detail, we've started this plan. Hopefully within the next 6 months things will get easier for our family and the lessen the stress load and also open up some funding so that we can do more with both boys.

9/10/10

Wow, saw Temple yesterday at michigan theater in downtown Ann Arbor, it was great. Posting an article about it below this post. I really learned a lot during her lecture about perception and even though I'm aware of Tyler's sensory issues, It's not always at the forefront of my mind. In the article below, it talks about a story regarding a horse and a certain colored cowboy hat. I immediately thought of Tyler and his food issues. How at 13 months we were beside oursleves with worry on easter weekend because Tyler stopped eating all baby food and would vomit at the site of his bottle (not even touching it)... we were worried we'd haev to hospitalize him...why on earth did it take me 2 days to realize all we needed to do was change the type and look of the bottle, grrr... voila, Tyler would take his bottle no problem. After the norovirus and Tyler's unwillingness to eat for 10 days!!! I started removing the plate completely and just putting food on the table, a different table, and he started to eat again and then I slowly changed back to the regular table with a plate. We still use this plan now if for some reason he eats a texture he doesn't like and begins to gag... we have to immeidately remove the food from his mouth or he will vomit or if he gags at teh site of food, we remove the plate and everything, try to guess what was causing the problem and then get a new plate (that looks totally different) add back all food except the one we thought was problemsome. Anyway.... thats what I thought about when she talked about the cowboy hat.

She also talked about different types of learners. She's a visual thinking, some people learn best with words, others are perception based. I actually think that Tyler learns in all of these ways. Pattern based thinkers are good at music and math and Tyler loves his music. I also think he has learned a lot from viewing words and matching them to pictures. I hope this is all good news for Tyler.

I was amazed at her sense of humor and wondered if it was a learned trait. People at the spectrum are so literal that I believe it's hard for them to be intentinoally funny. I wonder if it was a learned skill for her based upon her lectures. She learned why amused people and kept them engaged in discussion and therefore kept doing it in future presentations.

Ok, I am happy to report that both boys are doing great in school. Ben LOVES his new preschool but it's definetly wearing him out. I asked him the otehr day if he misses his old school and he said he never wants to see Caden Saltz again.... poor boy was being bullied and it was making his days miserable. He's very happy with his new school and so are we.

Tyler is doing graet as well. He has new teachers this year and they are co-teachign the level 1 classrooms. They are also workign to do more inclusion work with general education kids which is great for role modeling. HIs teachers have been asking me a lot of questinos about technology and TYler's ipad and they seem to be really interested in bringing more technology into the classroom which will be great for TYler. He's so motivated to use electronics and there are new communication applications coming out all of the time.

Speaking of communicatino, Tyler said "yeah" appropriately the other day according to Annie's his secondary preschool. THey asked if he wanted to sit down and eat and he said yeah. We were very happy about this. We still are trying to get his speech therpy schedule set, haev yet to figure that out. I also really want to do music therapy (one on one). It's quite expensive and have been researching ways to get flex spending to fund it. Temple really drove this home for me yesterday, how important it is for us to embrace and support Tyler's interested and possible job potentials. According to HR, his pediatrician needs ot write s cript for music therapy. Which leads to my next problem. Tried yesterday to find a new pediatrician and the one we chose was nto going to be a good fit so we went back to the drawing board. Finding someone that will follow our ideologies for healing Tyler is the issue here. We've gotten some recommendations from friends so now I just need to find the time to start calling again. So then we can get the music therapy script and then will need to find a way to schedule that into our busy days. But again, thank you Temple, for reminding me of the importance of this. Plus, it's one on one, i'm not involved like i am with speech, so I can use that time to spend some quality time with Ben :)

Ok, that's all for now.

love to all

xo

Long before Temple Grandin's life was the stuff of an Emmy-winning HBO feature film, Chrisstina Hamilton had been trying to bring her to Ann Arbor.
Hamilton, director of the Penny W. Stamps Distinguished Speaker Series, finally got her wish of five years on Thursday night when Grandin's talk kicked off the 2010-2011 lecture season before a standing room only crowd at the Michigan Theater.
The lecture series is funded by University of Michigan School of Art & Design alum Penny Stamps. It's intended as a way to connect students with innovative artists.
Click here for the slate of Penny W. Stamps lectures for 2010-2011.
Grandin, a professor of animal science, a designer, and an author, focused her lecture on autism, animals, and the sensory-thinking approach both use to understand the world.
Beyond that work, Grandin has gained renown for designing humane slaughter facilities and a grading system to assess them.
"I want you to think about thinking," she said before the lecture. "And to understand animals, autistic people, mathematics — that requires getting away from verbal language."
Someone once asked Grandin, who is autistic and has Asperger's syndrome, what it's like to communicate with "normal" people.
"I feel like an anthropologist on Mars," she replied.
And much of her lecture focused on the failures of language to reach the autistic mind.
"Most kids, when you tell them 'don't cross the street without looking,' understand that to mean streets in general," Grandin said. "If you're going to tell your autistic child not to cross the street, you better tell them in 10 different places. They think in terms of specifics."

Temple Grandin appeared at the Michigan Theater Thursday.
Melanie Maxwell AnnArbor.com
Animals, too. Grandin once encountered a horse that was afraid of people in black hats, having been abused by a black-hat wearing cowboy in the past. People without hats and people with white hats triggered none of the fearful reactions that black hat wearers did.
"Animal fears are very specific. Their memories form in terms of pictures, smells, taste, touch," she said.
A number of parents in the audience asked Grandin to name a turning point in her life - the moment when the proverbial lightbulb clicked on.
She couldn't. Outside of the pre-age 2 "educational intervention" Grandin said is crucial for all autistic children, her progress is mostly the result of high expectations and a mother unwilling to give up on her. Doctors and educators knew a lot less about autism in the 1950s. Grandin didn't start speaking until age 4.
Now she's a professor at Colorado State University, a successful author, and the subject of a self-titled HBO film that recently took home seven Emmy Awards. That wouldn't have been possible without having mentors at a young age, Grandin said.
"You've got to work with these (autistic) kids: mentor them, hire them," Grandin implored the crowd. "Even if the skill you can teach them is a little outdated, it gets the mind working and learning. Kids who are out spraying graffiti need to be working with real artists. They need to start thinking in terms of assignments, and learn how to finish."
That's what Grandin did. She designed her first humane slaughter facility as a teenager, and built a portfolio long before anyone paid her to do so. She credits a childhood trip to her aunt's farm with sparking that interest. That and her mother's insistence that she make the visit.
"I didn't want to go (to the farm) at first," Grandin recalled. "My mom laid out my options like this: either I could either go for two weeks or I could go for the whole summer. But I went, and I loved it. That was the spark."
Grandin spent part of her lecture speaking against the "abstractification" of the language, one of the major barriers autistic people face in mainstream society.
"When we say, for instance, that a student has behavioral issues in school, that could mean he throws spitballs, or it could mean he hit the teacher," she said. "Now, both are problems, but the degree is different, and that difference is lost when you're being so vague. We need to learn to be more specific."
"Normal" people tend to think "top-down," Grandin said - they form their theories first and let in or discard evidence to fit that framework. Autistic people and animals think "bottom-up," or take an experience-and-evidence-based approach to the world. Hence the horse with the fear of black hats.
Educational systems that only cater to top-down thinkers are failing to reach many talented young minds, Grandin said. Under-stimulated, their problems spill over into the job market. Autistic students need school systems that challenge them while playing to their strengths, Grandin said. That's what she had growing up.
"The world needs different kinds of minds working together," she said. "We need to have these unique minds doing productive work, not bagging groceries because no one knows what to do with them."

Beaming with happiness!!!!

I have so much good news to talk about, I can hardly wait to tell you all. Let me first begin with, oh my gosh, did you see the Emmy's? If you have not seen the HBO movie Temple Grandin, please watch. The move took home 7 wins last night, 7!!!!! It's a move about the of Temple Grandin, she is extraordinary! I don't think I need to explain positive outcome this will have on the world of autism, but thank you Temple, for allowign HBO to telly our story. Thank you HBO for casting Claire Daines, oh my gosh was she amazing, and thank you to everyone who saw how amazing this film was and how worth it was for these awards. YEAH TEMPLE! Please watch the movie!!!

http://awards.tv.yahoo.com/blog/50-who-is-temple-grandin?nc

My other great news, we had an AMAZING family vacation. Whoppeeee. It's our first of hopefully many to come! I don't have a lot of time to write so I'll just say that the boys were great. THey both went on a roller coaster (big one), we visited water parks, beaches, museums, etc. The difference between Tyler this year and last year is unbelievable in terms of his coping skills as well as his tolerance for new situations, surroundings, people, and chaos. i cried when we got off the rollercoaster, in somewhat disbelief but mostly thankful for having a normal family moment. There were days that I never thought we'd have those moments. There were days when Tyler was put to the front and everything else pushed to the back burner, including Ben, Steve, my marriage, pets, etc. I just kept hoping and wishing that the pay off one day woudl be worth while and oh my was it. It all was worthwhile. I'm going to remember that vacation the next time we go through a hard patch and question my decision making, etc. Thank you grandma and grandpa Taylor for letting us stay at Sandy Pines... really helped us be able to get otu and take the boys places.

Ben started a new preschool today, yeah! This is going to save us a lot of money each month (long story) and it's also more local to Tyler's school which means our schedule isn't as crazy. Plus the school is fantastic and I'm so happy for him. I often felt I just made decisions for Ben that worked within Tyler's schedule but not necessarily whats best for Ben. I finally feel I have Ben in the best place he can be and it also works well for all of us.

There will be some other big changes comingin our life soon as well. I mentioned a while back we are trying to simplify our life and all of those plans are in the works.

Oooh quick update on Biomed.. Still my goal to find a new pediatrician, ahven'e done that yet but Ty has a cold right now and I"m needing to find time to get them to a new doctor. We tried once again to stop B12 shots without success, TYelr still needs those shots. THe problem now is he knows they are coming and it's really tough to give htem to him and ptus a lot of stress on Steve. We've been working together to trick TYler so he isn't aware they are coming. Teh suckers we tried didn't seem to have the same effect on him. We also have widdled down his supplements nad so far haven't seen any major changes. Right now TY is on spectrum complete, fish oil, digestive enzymes, pycogrin (SP?) and TMG. WE need to place a new order and I believe both boys need a calcium supplement and Ben needs iron for sure (carb junkie!) so I'm going to just try to keep Ty on that spectrum complete, enzymes(these two are the most expensive of course), and TMG and then B12 shots. When they are on antibiotics or sick I'll beef up on the vitamin C and Probiotics. But this is our plan moving forward into fall and winter, we'll see how it goes. He's doing great though.

xoxoxo