12/13/2010

We worked really hard to get these pictures, impossible to get both boys looking and smiling. There were a whole of tickles and hidden parents in these pics trying to get a good shot, we got a few good ones:)

Things really seem to be coming together on the home front and making changes to help simplfy our lives a bit. It's been a hard road but I feel like we are definetly on the right track and making good decisions.

A friend sent me this e-newsletter from her local doctor's office. I thought it was interesting. As you all know, we believed Tyler had autism from the beginning but he did get worse after 12 month and 18 month vaccination. Remember that video I posted on a previous blog, http://tylercretsinger.blogspot.com/2010/01/blog-post.html It was such a deliberate "ma-ma" that came out....just before 18 month vaccines. I just had to watch it again, over and over, I tear up each time. Oh how I wish I would have listened to the minority, from day one I had concerns about Tyler, and that's a warning sign for parents, those kids who show just a bit of abnormality, need to avoid as much toxins as possible. We have a guy at work, has twins, one boy and one girl, they just went in for their 18 month (maybe 2 year) vaccines and the boy had a serious reaction to the vaccines. I told him things he could do biomedically to help his son recovery as well as signs to watch out for moving forward. That's the thing, everyone listens to mainstream doctors and media until something happesn to them, they think we are all crazy until it happens to your child, you see the changes, you feel the pain of it being a decision you made. It's frustrating. So this article is even more frustrating.... this is the bottom line

What's happening with vaccines NOW?

Drug companies are relying heavily on the future of vaccines. Why? Because health care costs are high and changes are coming to bring those down. This will include less medical imaging, less lab tests, less doctor visits and possibly restricted drug sales. A survey was conducted before the health care bill was passed. 45% of medical doctors said they would leave medicine if the bill passed. That's a lot! With less doctors, less prescription drugs will be sold.Drug companies see that their future is not in drugs because of these reasons. In order to bypass this imploding system, they are relying on vaccines. When a vaccine is made, then mandated by law, everyone needs to get it, not just the sick. This bypasses the medical doctors. Testing? Not necessary. It doesn't matter if you are sick or well. The profit center expands from just the sick to everyone.

At a recent seminar that we attended a doctor spoke about his experiences with vaccine-related injured kids. He lives in a part of New Jersey that has the highest rate of autism in the country. In the last three years, he has seen over 200 autistic kids. Each one was fine until they were "given that one shot". He finds mercury in all of them. (Vaccines have mercury in them except if you request a shot without it.) The autistic kids become more social, start talking, need less external stimulation, etc. when the mercury is cleaned out of their body. (We do this also.) The doctor has done three studies for the National Institutes of Health (NIH) and his dad has worked for the NIH for 15 years. He said the NIH is "more corrupt than the entertainment industry." Example: When you google "vaccine+autism" or "mercury+autism" the studies that come up show no link s between the two. This is criminal. Talk to moms who have autistic kids and they say "Junior was fine until he got that shot." The other main source of autism is from mom's mercury fillings while she was carrying the baby. The mercury was transferred to the fetus in the blood or through breastfeeding later. There are studies on this to prove it. Here are 21, all referenced. 21 studies. We need our dentists to stop using mercury fillings. Feel free to tell your dentist, "No mercury. Thank you." If he says there is no harm from them and the American Dental Association can prove it, find another dentist. We have many good ones to recommend. One of our patients, a new mom, reported to us that her pediatrician said there are 96 shots in the first two years. That's too much formaldehyde, mercury, and aluminum for any size human being. Even if the vaccines were not toxic with poisons, the theory of vaccination alone is not proven.See here that polio is historically directly related to pesticide production. The same website shows smallpox increases with smallpox vaccination.The site here has 26 graphs that show how vaccines have no effect on the disease it is supposed to cure. It also shows how many diseases had been on the decline for almost a century before the vaccine was even introduced. These include scarlet fever, whooping cough, rheumatic fever, tuberculosis, tetanus, measles, and more. The reason why these diseases started to decline since the 1800's is because our sewers are now closed and we use soap more. That's right, showers and toilets are medicine's greatest advance ever. Beyond that, eat real food, not food products that look and taste like food. Use whole food nutritional supplements, not the chemicals labeled as vitamins. We can help you with that.

We have supplements to help your immune system if you choose not to get a flu shot. The decline in sick days is measurable and significant. We do really well with people who are "always sick". They go through a winter with only one cold instead of being sick for four months straight.

If you know an autistic person, bring them in. We'll find the mercury and remove it. Also, vitamin D plays a huge role in getting kids to talk and reversing autistic symptoms. Reliance on medication and vaccines is a problem. Drugs are good for saving lives during emergencies. The chronic degeneration of a body caused by American food needs to be reversed with nutrition. Call us to get your health back!

-Dr. Schmidt

:(

It's with great sadness and frustration that I tell you that autism insurance bill did not make it through, it was never brought to the senate floor for a vote :( It's been a hard week for us for many reasons but this is just a huge hit. I had tried nto to get too excited but I couldn't help but get caught up in the what if's. Maybe we wouldn't have to give up the last piece of the life we had once planned, maybe if I can get Speech and Behavioral therapy covered, I can afford two music therapy session a week for Ty. Maybe we can get Ben involved in more extracurricular activities, maybe, maybe, maybe....all got shot down with this horrible news.

I was sad last night when I got a feeling it was going to get voted on and then this morning when I found out for sure it didn't make it, well I just couldn't stop crying and just now I've found myself in just a dull melancholy depressive state, so I was delighted when I just got the following email from Ty's teacher:

"You should see Tyler with his device! He is scrolling through multiple pages to find the pics that he wants, and is using it to do fill-ins when I'm reading the story! This is fantastic!! Will try to get some video footage for you to see at some time :)"

Thanks little guy for putting a smile back on my face and for a friendly reminder that you are worth every tear, every penny, and every future battle we have to face on your behalf. XOXO baby

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

July 26, 2010

Wow, as you can tell this month has been crazy and I just haven't found time to write in the blog. Tyler has a lot of summer activities this summer and it's been great, he's doing so well. He goes to Splash Camp Monday - Friday from 9:00 - 12:00. We were very lucky as we actually received our first grant for TYler, which paid for part of splash camp! It was our first grant and very exciting. Then he eats lunch in our car (my poor van is trashed) and then we take him to summer school from 12:30 - 3:15. Then we pick him up and take him to Annie's (his afterschool preschool with mostly typical kids). He only has summer school Monday - Wednesday though so the beginning of our weeks are crazy. Lots going on since there were layoffs at my work which added a lot to my plate as well as new financial software and a new staffing software that I sort of fell into leading the project, well it's been nuts. And Steve's work is always busier in teh summer so we are kind of just in warp speed it seems. I remember one week complaining to Steve that it was ridiculous that I coulnd't find time to get to the store to get some hair conditioner!

But as always, it's so worth it! Tyler is doing awesome at both Splash Camp and summer school. Summer school says that during circle time, Tyler is the star of the show and he always wants to make sure that the teachers are watching him. At splash camp they just keep commenting on how bright he is and how happy, etc. It was funny cause htey sent home a note one day asking if he knew how to spell hsi name because they wanted to work with him and we responded back, um yeah, our TY guy can spell all kinds of things. Oh if only he could talk and share all of his knowledge. I'm actually home with him this mroning as he's a bit under the weather. HE was playing the leapster and it had a dinosaur game in it. HE brought 3 actually dinosaur figurines with him. He'd push on the triceratops bones on the game and then hand me the triceratops dinosaur. He so wants you to know that he knows what's going on. Plus I'm really excited abou tthe possibility of Tyler having an interest in dinosaurs so that maybe the boys will have something in common to play with and it will promote more interaction between them.

Tyler is absolutely loving his ipad. THere is one app we have where he has to trace the outline of letters and numbers and words and he's really liking it and it's improving his fine motor skills. He also is learning to spell so many new words thanks to the ipad and in terms of our mobility, it allows us to get out and do more because we know that TYler loves his ipad and will be more content if he has to stay seated, etc. We took it shopping at Sam's the other day and Tyler was fantastic. THe IPAD has been a godsend really.

As for Ben, he seems to be doing much better at preschool now in terms of his social skills. He's still regressed in the whole potty training (has at least one to two accidents a day) and he's a bit more aggressive than he was before but I take that all as part of a learning curve and I am working hard with him on those things.

Both boys have really came leaps and bounds in terms of their swimming abilities. A couple of weekends ago , they both were jumping off the diving boards and swimming on their own in the deep end (with life jackets of course)> Tyler would happily drown if you let him, he has no fear what so ever of jumping in with no life jacket and just letting himself drown so we definetly keep his jacket on! It's amazing to see them swim around in the deep end of a pool, they look so grown up.

I had a dream the other day that Tyler could talk. And even though I have this type of dream often, this one was different. Usually Tyler just says one word or one sentence, this time he was speaking in whole sentences, as if he'd been talking his whole life. It was amazing. Felt so good, I was crying in the dream, I remember it all so vividly and then I woke up and felt an overwhelming sense of sadness. Earlier that day, I had picked up Ty and we had been in the car for about an hour, he was watching a movie. WHen we got Ben, Ben pointed out to me that he wanted to watch the movie but couldn't because the screen hadn't been pulled down. I felt really bad for Tyler. Poor guy had been listening but unable to watch his World Music Video because i didnt realize the screen was up and he didn't have a way to tell me. It's little things like this that make me crazy that he can't talk. Yesterday, Ty was not feeling well, I knew it as soon as I woke up, he just seemed off and then wasnt' eatin gwell. I had to work and Ty fell asleep on Steve's lap, not lik e him at all and then he slept for 3 hours in the middle of the day! And another 12 hours last night. He's definetly under the weather but I hate smoetimes that he can't tell me what's wrong, what hurts, how he's feeling, what's going on. It's always a crap shoot, he doesn't have a fever so to pin point the problem is tough. I just wish beyond wishes he could talk to me, you have no idea what it feels like to not have him be able to tell you the simplest things.

Speech has also been going amazing this summer. Carol says she doesn't know what we've done but to keep up the great work. Good news to us cause we are trying to limit his supplements. Oh, and we are down to only 1 shot, sigh, and are not wanting to find another DAN doctor right now so we are still working with Ty on the suckers. We have the B12 suckers now and i tried one the other dya and could definetly feel a difference. So we plan to give him a shot tonight and then start working on the suckers again. He just gets bored before it's gone and the whole goal is to let it seep in, not crush it and drink it so to speak so we need him to suck on those darn things til they are gone, so far he's not overl

y interested but he will tolerate them so we hope he gets better.

The good news and bad news

The bad news is.. pretty sure i"m on the very of losing my mind lately. If it weren't for some amazing family members, it may have already been gone! My mom has been amazing. She's stayed with Tyler the last two weeks during the day. She's got him going on the potty really well and also got him to like suckers! This is huge for us. You know he gets methyl B12 shots well B12 also comes in sucker form, we have order our B12 suckers and hope we have the same effects as we do with teh shots. We'll soon know! The suckers actually end up being slighly more per month than the shots are, however it's a lot less stressful, easier to transport, no pain, and a special treat for Tyler. We've tried a couple of times not giving Tyler the shot during my mom's stay with him so she can track his progress, we never tell her when we didnt' give it though. She would jus ttell us when Tyler would ahve an off day or what was going on and then we'd give a shot and voila next day Tyler was more alert, interactive, and less stimmy. We know they work and are happy that we may have found a much more fun alternative.

The boys alos had their first densist cleaning. Ben did absolutely amazing. See him in the pic above smiling away. he was a total ham and never wimpered or complained once. Which isn't exactly his personality! He was such a good boy. Tyler on the other hand really struggled. I was so glad that both my mom and Steve and I were tehre. It took both Steve and I to manage Tyler so the doctor to get in his mouth, we literally had to restrain him adn if you've ever tried ot restrain Ty, he has the strengh of a 100 lb child I swear! My mom then watched after Ben int he waiting room. Remember Ben needs antibiotics before dental appts. I had remembered to fill the scripts and pick it up, however I had forgotten to tell my mom to give it to Ty before the appt. SIGH. So teh doc had to administer it there and then we had to wait a bit for his appt until he had those meds in his system. Anyway, it was stressful and thank goodness Ben has the worst teeth of the two (sorry buddy all myf ault) because Tyler is going to be a handful just get his teeth flossed. It's steve nad my taslk to really start workign with him on getting into those teeth, etc. and hving him slowly accept it. He's fine with teeth brushings thank goodness!

Ok I'm in a hurry so i will wrap it up.

So the good news.... we received our first grant! It helped us pay for part of Tyler's summer pgramming and we are super excited. The bad part is we have no idea how to manage TYler' sschedule right now. My work has had layoffs... I'm now doing the job of what 4 people once did and we are in the midst of (next week actually) using all new financial software in the city and my departmetn is training on new staffing software which I've been responsbielf for this project so my plate at work is more than full. Steve has a lot of pressures on him right now at work and begnning next week. For 3 days of the week, Ty goes from Splash camp, to summer school, to Annie's presschool... He's in presschool 3 days a week adn splash camp 5 days a week. All programs are great but the amount of running around we have to do in the middle of the day, well all day really, has our mind boggled with all the other pressures we have going on at work, home, etc. Did I mention we are hoping to move early fall and need to get things in order for that? So anyway life is crazy and somehow we are getting through it all and figuring it all out. Thanks to all who help us!

Love to all and happy 4th.

Update... he's doing great

From Annie's: He is doing awesome! He has been eating well and refreshing us on our sign language! He has been a chatty guy with those hands today! Luckily we have Miss Mandy and Mrs Karen that have helped us keep up with him :) Currently he is playing in the big room with other no nappers.

So nervous...and PLEASE HELP!

Tyler is at Annie's preschool/daycare all day today as school got out yesterday and we didn't have any other options. He usually gets bussed to Annie's after school and arrives around 2:30 and then gets picked up around 5:00 so an all day 8 - 5:00 stay makes me nervous although I'm sure he'll be great. Most, if not all, of the kids in his class are typical. I think there are 6 or so classrooms in the building, plus infant and toddler rooms and at least 3 playground/areas. It's a big place! Hopefully he's doing great.

Rumor has it Tyler did great yesterday with the ADOS at UMACC. We love to help them out and allow Tyler to be their test subject for training purposes. Big thanks to Grandpa for handling it for us as neither Steve or I could get out of work. Lots going on with both of us on the work front, creating lots of chaos in our scheduling and logistics.

Speaking of which, we are sad that we cannot attend the net workgroup session for autism insurance in Michigan. If anyone has the time and/or will be in the area, we need your help. It will be on Monday, June 21st from 12-2 pm. The workgroup will be held at the Detroit Medical Center's Children's Hospital Auditorium. A link to a map and parking instructions can be found here. Parking is available in the garage for $2.50 or you can choose to valet park (also, for a fee).
The auditorium seats 250 people- we need it packed with standing room only! Please wear your AIM shirts to show your support. If you do not have one, they can be purchased by going to Autism-Ask or a limited quantity will be available for only $5 on Monday. Everyone is welcome, so please plan to be there!!

If you cannot attend...write your local newspaper editors: Here's the info you need:

Letters to the Editor
Please write a Letter to the Editor of your local newspaper this week, ASAP! We are trying to get as much coverage of this issue as we can! Listed below are some key themes and points, as suggested by Dave Meador, who is going to be one of the speakers on Monday. Feel free to use these key talking points in your letter or create your own, with the theme being that it is time for the Senate leadership to take action NOW!
Key points:
Autism Insurance Reform in Michigan equals at least $14 billion more in savings for Michigan, a state in desperate need of reform. This is a conservative estimate.Michigan's 15,000 children with autism do not have access to the medically proven therapies that can move at least half of them to normal function. While the cause and cure of autism are not known, these proven therapies are not covered by Michigan’s insurance companies. Of the savings, $200,000 per child would go to the schools over their school life.That is why 22 states have rapidly passed this legislation and another 21 are on their way. Autism reform legislation equals at least $14 billion in savings to Michigan, $3 billion of that to the schools. It allows children a chance at a productive life and new jobs for health care professionals. Reform doesn't get much better.We encourage the Michigan Senate to continue to provide leadership and move on this legislation before the summer recess.Goal:Most Michigan Insurance Policies exclude coverage for medically proven therapies for children with autism. We are seeking to become the 23th State to pass insurance reform that would provide therapies including, but not limited to Therapeutic evaluations and interventions, Speech Therapy, Occupational Therapy, Physical Therapy, Comprehensive Behavioral Treatment for Young Children - Intensive early intervention, Applied Behavior Analysis (ABA), Psychological Services, Psychiatric Services The case for change is has been made and the time for action is NOW.

I am tearing up now thinking about the struggles our family faces, the dynamics of it all, and how it affects so many areas of our lives that you couldn't even imagine. Insurance coverage for just speech alone would free up $400 a month which we could use to pay for music therapy for example or use to pay Tyler's supplements which we typically end up putting on a credit card or can be used for a family vacation we are trying to plan someday so we can be a normal family on occasion. Not to mention how much it will help Tyler.. we want more services for him but we are doing all we can do now. You saw yesterday's post..the sky is the limit given the right resources and not providing coverage is discrimination. It's SO HARD on families. TACA reported 3 deaths this past week of parents who actually murdered their child who had autism. how horrific is that....these parents need more support and affordable services. So please do what you can do. xoxoxooxoxoxoxoo

6/17/10 - Last Day of School

Today is Ty's last day of school for the regular school year :(. he has a few weeks off and my mom will be staying with him and then he starts Summer school and Splash Camp. He's a bit out of sorts today, he's been waking up a lot lately in the middle of the night and he's quite exhausted as result. They are going to jump city today and he's helpign U of M conduct some ADOS training this afternoon so I'm hoping he makes it through all that ok.

So thought it would be a good time to summarize where he stands on his goals from his IEP:

Self Help Skills: Tyler rcontinues to struggle with self care activities like takign off his coat, putting away his backpack, going potty, washing hands, etc. He can do these things but it takes an adult to support him thruogh each task or he'll just wander away uninterested. I'm hoping to work on more of these things this summer.

Fine Motor Skills: Tyler is still behind on his fine motor skills including scribbling, stacking, opening lids, etc.

Speech/Language: As we all know, Ty can't talk and has been struggling with signs for the pst 9 months or so. He scrolls and it's hard to distinguish some of his signs unless you have an idea of what he's getting at. He does however, follow transitional verbal directions/prompts for actvities at school without pictures. He's been donig this at home for a while, but school was using picturs as a support to help him transition from one activity to another which used to really be hard for TYler. He has a really good core vocabulary that he comprehends.

Play/Gross Motor/Imitation: The goal was for Tyler to imiated 20 gross motor movements and currently he can do 18 of them. He struggles with a thumb's up and touching his head. He struggles with social interactions but has improved. HIs goal is to have 3 - 5 turns per setting.

Speech/Language: Tyler has significant oral -motor apraxia and is workign on skills to imitate differentiated vowel sounds and counstantns. He's producing the "b" sound and the "A" sound givin a hand signal and at home also with a verbal prompt.

Ok that's a summary of where he is... how here is an awesome article from ABC World News..... made me tear up....I hope/dream/pray that Tyler's story will be similar.....


Autistic Salutatorian Delivers High School Graduation Speech
Rhode Island High Schooler Leads Class Despite Speech Struggle
By BRADLEY BLACKBURN
June 16, 2010—
Eric Duquette is the salutatorian of his high school, an honor student, a musician, and he has autism.
The 18-year-old Duquette, who couldn't say a word until age five, gave the commencement speech at his high school graduation ceremony Tuesday night in Smithfield, Rhode Island.
"My parents were told I would most likely end up in an institution," said Duquette. "I stand before you accepted into every institution of higher learning I applied to."
He stood at the podium wearing a green cap and gown and a big grin on his face. His speech, funny and touching, was met with enthusiastic applause from his peers.
Watch 'World News' for more on Eric Duquette's story tonight on your ABC station.
Duquette graduated from Smithfield High School with the second-highest grade point average in a class of just under 200 students. He will attend Rhode Island College in the fall, with plans to study biology and eventually become a pharmacist.
"Tonight is all about reflection and looking forward to the journeys that lie ahead of us," he said.
It's been quite a journey for Eric. His success in high school came after years of work and slow progress. Diagnosed with autism when he was a young child, Duquette struggled with communication and language.
Mother's Dedication Gives Gift of Speech
His mother, Judith Duquette, began working with him early to break down his communication barrier with speech therapy. In addition to professional therapy, mother taught son using sign language and cards with pictures and symbols.
Despite his early struggles with speech, today he speaks both English and Spanish. He's a member of the Spanish National Honor Society and placed 93rd in the nation on the Spanish V exam.

Judy Duquette combs her son Eric's hair before he delivers his graduation speech.Photo credit: The Valley Breeze
"Daniel Webster wrote that 'if my possessions were taken from me with one exception, I would choose to keep the power of communication, for by it I would soon regain all the rest,'" Duquette said at the podium. "For me, learning to communicate did mean regaining all the rest."
Salutatorian with Autism Gives High School Graduation Speech
Listing the scholarships and college acceptances he's received, Duquette said that he hoped to inspire his fellow students.
"I tell you this so you do not allow yourself or others to be defined by your limitations but rather abilities. Never underestimate yourself," he said.

Eric Duquette, 18, receives his diploma during the Smithfield High School graduation ceremony on June 15, 2010.Photo credit: Lee Walsche/Lifetouch National School Studios
After the ceremony, Duquette told ABC News he was proud of his performance.
"I think I perfectly encompassed the compassion and spirit of Smithfield High School through each and every single one of my words," he said.

One last link.. this is a link to a blog of a mother with an autistic boy and this particular story discussed how an IPAD changed her son's life. I cannot wait to get Tyler one, he loves the one at speech...some guardian angels have ordered one for him and it's on its way :)

http://www.blogher.com/ipad-nearmiracle-my-son-autism


On the home front.. life has been rough lately. Lots of stress with death's, illness, work schedules, lay offs, etc. We are actively planning to have a simpler life come early next fall that will meet the needs of everyone and hopefully make us all a big happy family:)

xoxoxoxo

06/08/10

The boys are having a great time on their new water slide/inflatable. We have such a hard time getting them to enjoy the same activity during the summer months. We usually end up taking the boys to a community pool or sprinklers or whatever during the weekends so that they can get out and have some fun and enjoy the health and good weather that summer brings and so we can too! they can be expensive, and time consuming once we pack up food for Tyler, activities to keep him engaged/sitting while we eat whever we are, and then all the normal kid stuff, diapers, snacks, drinks, towels, sunscreen, etc. We usually end up spending as much time traveling/packing as we do enjoying whatever activity we had to pay for. So this summer, we decided we'd like to spend more time enjoying life as a family/relaxing and stress free. So we got the boys this inflatable. It was a hard decision honestly but I've been feeling a lot of guilt lately about Ben, actually both boys. Man I wonder if that guilt ever goes away? Ben has been delayed in many areas and it's becoming quite apparent now that he's in a bigger preschool. His socials skills and self care skills are behind. A product of us having twins and one with autism for sure, none the less he's behind and it's hard on me, each time something happens I just feel so guilty. I know I make choices that benefit Tyler more than Ben and do so quite often. I hate that it has to be that way. Anyway, this purchase was a very non-autism gift. Ben deserves it... took a big hit that week in terms of figuring out how to pay bills but it was all worth it, look at their faces! It conveniently stores away in a small box and inflates in about 20 seconds, add a hose and voila.. hours of playtime.

oh, here's a funny about Tyler. We got to school early the other day and there is a play area opposite the hall way of his set of classrooms, so we went down there to play. There was another dad and his son playing there. At one point the dad was standing with one leg sort of over the other and his foot propped up from the ground, so jut his toes on the ground and his foot sort of resting near his other leg upright. Tyler ran by, looked at his foot, turned around, went back and then bent down and grabbed his foot and pushed it down to be flat on the ground. I quickly recognized what he was doing and told the Dad so he wasn't wondering what the heck was going on. Jeez.. didn't he know that your feet are supposed to be flat on the ground! Ha ha..

Another cool thing about Ty.. many kids don't realize until they get older that Twinkle Twinkle Little Star follows the same tune as the ABC's song. Tyler knows this... hard to explain but he has a bear that sings the ABC song and he signs twinkle twinkle when it comes on for me to sing that instead of ABC's.

We are once again research one on one music therapy for the fall. I am so happy because I learned that they begin with the piano. So I'm really hoping we can figure out a way to make that happen. We do plan to free up some monthly cash flow so this should fit right into that plan.

We haven't yet found a new pediatrician, I'm struggling with the whole DAN Doctor and whether or not we really need one and also getting recommendations from friends. I don't know how we keep having to change. The plan was we'd move to a small town, have a small town doc, and they kids would have htem til they graduated high school. oh how things are different than my grand plan! Speaking of which.

The other day, the boys were in bed and Steve and I were in the living room and I said, I just want it to be a bad dream. I want to go to sleep tonight and wake up with the life we had wanted/dreamed of. I want our boys to go to school together, to play together, to talk! To go camping, to go to the store without packing 5,000 things to keep Tyler entertained. I want to be able to provide for the boys equally and be able to save money for college fund and us for emergencies. i want to visit family more often, I want our kids to play with our kids friends... I guess I got what I wanted. When I was pregnant and put on bed rest at 26 weeks, i remember just praying that the boys would stay in long enough to have a chance at life. I should be more thankful that I got what I wanted then, things could have been way worse of course and i do have two happy and for the most part healthy boys. I really am thankful for that. It's just that autism can be so draining sometimes and to know that there isn't really an end in sight, it's just a continual fight, sigh. I feel so guilty all the time that I'm not doing enough and I hate it. And to be honest I could do more and i know it, sometimes I just don't have the energy. Last night, dinner was going so well with Ben and he was so engaged with me (and had been a bad boy at school) that I really wanted to work with him.. so Tyler ate with his fingers and I didn't' stop him. We really want Tyler to begin to use his utensils more now that he's eating by himself. Steve was at our parent support group last night, it's hard for me to attend because Tyler is usually in bed by 6:45. Oh and then Ben and I had a sort of bathroom disaster last night and I was happy Tyler was in bed, he wouldn't have had the patience to deal with it. I can completely see how it would have gone if Tyler was awake and inadvertently I would have likely yelled at Ben who never seems to stop talking in the moment of crisis which in no Way was his fault or does he deserve it. And that's what i mean about a normal life...that's how it's supposed to be. Ben and I did great, he was patient, waiting for me to drain the tub, fix the problem, fill it back up so he could bath. No crying, whining, etc. Tyler would have been so upset, not understood what was happening and certainly not been able to wait the 5 or so minutes it took for me to take care of the problem and since it was close to bedtime, he likely would be screaming in my face until I put him to bed and skipped the bath. Ben would have been whining that Tyler was hurting his ears and then acting out for attention cause me calming Tyler would have been my activity at the moment. Ugh. For all of you who say it's like that when you have multiple kids, I don't believe you., or at least I can guarantee you it's not the same. I've seen my friends who have multiple kids and it's not even close to the same. You'd be amazed at how much just the concept of waiting can cause issues in our house. Or the fear I have that at any moment Tyler could walk out a door and I'd never see him again, he couldn't tell anyone who he was or what he was doing. Definitely my biggest fear. We were at friends recently and a babysitter was there because we were all going to a Detroit tigers game (I got free tickets thru work) and they have a huge house. Plan was for the sitter to watch our kids there, they have a 2 and a 5 year old girl nd then our boys. The house is 3 levels with numerous doors and I was not comfortable with Tyler having a run of hte house, so they had to move everything for their kids downstairs so that the sitter had one floor to watch the kids/doors. That's what i mean about it not being the same. One of their children was younger than ours but they had no worries at all about their kids taking off or being in far off places of the house without worrying to what they were doing. I can't imagine that for Tyler, we have gates, locks, etc. everywhere. Too many stories of kids with autism lost in the woods in the middle of winter or in the swamp or wherever. They don't understand to ask for help or they can't talk at all or they don't realize they are in danger.

There was a night a week or two ago we had friends over for dinner. Tyler hasn't seen them in a long time, i.e. no way could he remember them. The kids ate first as they were getting hungry and our food wasn't ready. After dinner, the adults were sitting at the table wrapping up and Tyler went up to the guy (pete) who's a big guy! And grabbed his hand so pete said, what's up dude. Then tyler pulled on him, so I said he wants you to go with him, so once Pete stood up, Tyler put his arms up, I said, he wants you to pick him up and take him to bed. Pete goes, really? I said, yup! So cute!!!! So he took him to bed and all was well. It was really so sweet.

As for the Assistive Technology Plan, it isn't finalized yet, still in the planning stages after our 2 hour mtg, but hope to wrap it up before the end of the school year for sure and have something in place moving forward for next year. I'll keep you posted.