Tuesday, March 11, 2008

3/11/08 Update

As of Friday, Tyler has mastered 11 objectives as follows: Shows interest in a variety of sensory and social experiences, engages when alerted by partners, reponds to be ibids for interaction (2 categories so this is two objectives), initiates bids for interactions (two categories/two objectives), aniticpates anothe rpersons actions in a familiar routine (two categories/two objectives), requests desired food or objects, engages in brief reciprocol interaction (two categories/two objectives).

The following is a list of goals we are currently working on for Tyler: Looks towards people, imitates familiar actiosn or sounds immediately after a model, follows situation cues in familar routines, uses exploratory actions on objects, requests social game.

We received wonderful feedback today. Carrie is videotaped each week (one week at our house and the next week at the clinic then back at our house, etc.) and another clinician has to score/rate her videotapes. Right now she is the only clinician at U of M so her tapes get sent to Florida State University where they review the tapes and provide the feedback. The other clinician is amazed at how far Tyler has come since he began the study and commented on what a wonderful job Carrie is doing. This is so rewarding to us as parents as well becuase our time on the weekends with Tyler isn't the same as during the weekday for obvious reasons so we are just so happy.

On a general note, I'd like everyone to be aware that what Tyler is learning at home takes a month or two to generalize to other areas (locations) and when you add new environments, large groups, new people, etc. into the mix, he can and most likely will sometimes resort into some of his old behaviors and play styles. This is one of the major reasons we are really wanting to get some videos out there (having trouble with formatting) so that you can see all the progres she's made at home.

Tyler has his monthly evaluation at U of M tomorrow so hopefully all goes well.

Friday, March 7, 2008

3/7/08 Take 3 - Exciting events

Very busy day it seems! Wanted to let everyone know of a couple of events. As I mentioned before, the 5K race I ran last fall was to benefit the Judson Center www.judsoncenter.org. They are a really great local organization who provides a lot of resources for parents. Anyway, got this infor from them today. I have rearranged Tyler's therapy on the 22nd so that I can attend the rally (pending final details). I'm going to be going with a co-worker. All family, friends, advocates, etc. are invited. We are really hoping that by the time Tyler is in preschool, that insurance companies will start covering costs for all types of therapy, ABA, speech, etc. I'm also going to attend the event held at the judson center that will help me learn about political advocacy as I want to become as much involved as possible. (see below)
Judson Center: We are excited to announce that there will be a Rally in Lansing on April 22nd at noon, to call attention to the issue of the autism insurance legislation (check out www.michiganaction.org for more info about the legislation) that is currently pending. Please save the date and try to get to Lansing this day!!
In order to help organize for this event and to teach parents and other interested people about grassroots lobbying, political advocacy, how to talk to your local senator or representative, how to write effective letters, and more... Judson Center will be hosting a workshop on Monday night, April 7th at 7pm. Included in this workshop will be some video clips from the recent House hearings in which many of our parents (and even a special little 8 year old boy!) testified in front of the Health committee and a room full of people!


Also, we do a lot of Tyler's grocery shopping at Whole Foods. I'm excited that they are hosting an event for GFCF diets in conjunction with the Judson Center. I talk to Stephanie (from the Judson center) weekly. She is wonderful. If anyone wants to know mroe about the diet, this is a great opportunity. the downside is that it's in ANn Arbor on a weekday. We are hoping that Steve can go to this as his lunch hour. If yo notice, it's the same day as the rally!





GLUTEN FREE / CASEIN FREE (GF/CF) class(es) at Whole Foods in A2 just in time for Autism Awareness Month.
So, if you are seeking information on the GF/CF diet - want to consider it, try it, try it again, get new recipes, try samples, share stories or just listen - this is for YOU!
MARK YOUR CALENDARS...
TUESDAY APRIL 22ND
11:30 - 1:30
WHOLE FOODS ON WASHTENAW
FREE!
Presenting will be Stephanie Harlan, Director of The Judson Center's Autism Connections program. Stephanie's family follows a GFCF diet and she has co-authored a children's book called "No Cupcakes for Jason"
based on her son's experience and SUCCESS...also provides a school guide to GFCF 'safe' products and practices. She has led GFCFsupport groups and educational seminars in Oakland Co.
There will first be an overview of the diet philosophy and 'chemistry'
as it relates to Autism Spectrum disorders and immune/digestive issues.
Then ideas for "GFCF Lunches", and samples, since it is done over the lunch time frame (do not come hungry and expect a full meal please...just a bite or two for taste testing a few products) - reference materials, recipes and Q&A with Stephanie plus an optional store tour at the end with a Whole Foods 'concierge' guide to see which aisles and categories they have for GFCF.
FYI- Stephanie can't actually cook on site this time (WF liability
limitations) and she stresses that she shops at many different stores based on prices and selections. She has great experience to share, and is generously doing this session (and hopefully future ones) at no charge - Whole Foods will provide small sample GFCF goodie bags for all participants.
The upstairs class room seats up to 20-ish people comfortably - Pre-Register to attend please @ Whole Foods Customer Service Desk or by phone at 734/975-4500 starting April 1st.
If well attended, this could potentially become a monthly event or series for our community...so hope to see LOTS of you there!
Watch the Whole Foods website and promotional flyers/signs in store in April for further details.

News: Vaccines & Autism

HEre is an article from Autism Speaks regarding a recent gov't settlement regarding vaccines and their relation to autism. I dont know if any of you know our opinion or not but we believe that Tyler had autism from the moment he was born. His cry stood out in the operating room.. I remember thinking, oh no, we are in trouble. I worried about Tyler from the moment he was born and never stopped. I never worried about Ben in the same way. I honestly began to notice symptoms of autism as early as 3 months if not sooner. However, I do believe that children who either have autism or are predisposed to autism, may have very adverse effects. We believe this happend to tyler. He got seriously ill after both his 12 month and 18 month vaccinations. The 12 month vaccinations caused vomiting and Tyler stopped eating for weeks eventually ending with him vomiting just at the sight of his bottle. HIs 18 month vaccination left him vomiting and lethargic. he ahd an ear infection at the time of the vaccionation (we should never allowed him to get teh shots) and therefore was on antibiotics and yet 24 hours after the vaccination and (antibiotics) he was beside himself sick where we almost took him to the hospital. I think he child with autism has different causes just like different treatments work for different kids which is why it is called a spectrum. The flu shot our doctor uses containes thimersol so we do not give the kids vaccines. Again, this is our beliefs. Please read the article below.

The parents of the 9-year-old girl who won a government settlement described how their hearts were broken as they watched their bright, red-haired daughter deteriorate into an irritable, odd-behaving toddler after she got several childhood shots."Suddenly my daughter was no longer there," said Terry Poling, the girl's mother, in a news conference Thursday. She and her husband Jon said their daughter, Hannah, has been diagnosed with autism.The government has agreed to pay the Polings from a federal fund that compensates people injured by vaccines. U.S. officials reject the idea that the vaccines cause autism, but they say that in this case the shots worsened an underlying disorder that led to autism-like symptoms.The Polings said five simultaneous vaccinations in July 2000 led to Hannah's autistic behavior. She was about 18 months at the time.

U.S. health officials have consistently maintained that vaccines are safe, and a lawyer representing them said this week that there was no change in that position."Nothing in any of this is going to change any of our recommendations" about the importance of vaccines for children, said Dr. Julie Gerberding, who heads the Centers for Disease Control and Prevention. "Our message to parents is that immunization is life-saving."In Polings' first appearance since the case became public this week, the Athens, Ga., couple acknowledged their legal case never got to the point where evidence was introduced or argued.They called on the government to remove thimerosal — a mercury-based vaccine preservative — from all flu shots. Thimerosal has already been removed from other vaccinations given to children."Why take a chance?" asked Jon Poling, a 37-year-old neurologist.

The Polings, accompanied by Hannah, said their daughter was a bright child who could whistle on command. But almost immediately after the vaccinations nearly eight years ago, she because feverish and irritable. Then, her behavior gradually changed so she would stare at fans and lights and run in circles."It wasn't like a switch being turned off. It was more like a dimmer switch being turned down," Jon Poling said.Government health officials conceded that the vaccines worsened an underlying condition and that she should be paid from the federal vaccine-injury fund.Autism advocates called Hannah's case a "landmark decision," although the Polings' own attorney disputes that."This was not a court decision," said Clifford Shoemaker, who is based in Vienna, Va. The U.S. Department of Health and Human Services conceded the case before the court was asked to make a determination, he added.Government officials wouldn't discuss why they conceded this particular case, but said people with pre-existing injuries can obtain compensation under the program if they establish that their underlying condition was "significantly aggravated" by a vaccine.

Medical and legal experts say the narrow wording and circumstances probably make the case an exception — not a precedent for thousands of other pending claims.Hannah has a disorder involving her mitochondria, the energy factories of cells. The disorder — which can be present at birth from an inherited gene or acquired later in life — impairs cells' ability to use nutrients. It often causes problems in brain functioning and can lead to delays in walking and talking.The Polings were exploring two theories about what happened to Hannah. One is that she was born with the mitochondria disorder and the vaccines caused a stress to the body that worsened the condition. The other was that the ingredient thimerosal caused the mitochondrial dysfunction, Jon Poling said.Since 2002, the preservative thimerosal has been removed from shots recommended for young children, except for some flu shots.

3/7/08

Tyler was very chatty at today's session. He actually surprised us a lot as he played with many items he's never showed interest in before, however, he was not too intersted in eating this morning.

I recieved the session notes from yesterday's session. Here are the highlights:

Snack routine: Caregiver did a wonderful job of engaging both Tyler and Ben in snack. Throughout the routine the caregiver was able to successfully balance her attentio between btoh children while also repsonding to all of their requests. She was also able to add in a song routine during snack that seemed to engage both children in a balanced manner. WE discussed what appropach to use with Tyler dropping items on teh floor. We decided the most eficicent way to address the issue was to hae the interventionist sit on the other side of Tyler during sessiona dn catch anything he attempts to drop. Then she will model "no thanks" and put them out of reach on teh table. O ur hope is that the skills practiced during session will generalize to snack snacks and meals outside the sessions. Caregiver should focus on upping the ante by having Tyler walk his cup to the kitchen counter or sink after meal time. NOTE: The dropping items on the floor is tricky to do w/o the caregiver due to the diet that Tyler is on. Typically Mom is eating when Tyler eats and Mom has a Tyler hand and a mom food hand, which cannot cross or touch. So I don't always have a free hand to catch the items he's dropping on the other side of him and he's very aware of where mom is sitting and where he is sitting and where to drop something so mom can't reach. That's why we chose to practice when the interventionist is there since we have extra hands and I'm not eating during his snacks.


Bath time feedback was pretty much everything I talked about yesterday.

Thursday, March 6, 2008

3/6/08

Today both boys stayed home with mom for social group and therapy. They were SOOOOOO good walking into the school holding mom's hand. It's quite a long walk from the car (parking lot) into the school and then to the back where the motor room is which is where social group is held. I was so proud and gave them lots of praises. They both were good at social group too until the very end where Ben didnt' want to participate in the wrap up activities which includes dancing and bubbles. He had a bit of a tantrum. One of the moms at social group again said she can't believe how much better Tyler looks now compared to before we started the diet. He just looks so much healthier. The walk out was just the same as the way in, very good boys. Ben stayed right by mommy when I loaded Tyler into his car seat. This has been a probelm for us before, i.e. Ben screaming becuase I make him stand in the car while I load in Tyler. So today I trusted him to stay in the parking lot right by me and he did, what a big boy!

As for today's session with Carrie, we started with snack time which went very well. Ben was a very good boy and was enjoying the visitors at our house (carrie adn videotaper). Tyler also did well. I was able to engage both boys with songs at snack time. We then moved on to the bath routine which is new (i.e. as a routine for the study, obviously baths aren't new!). Bath time went well. We decided for now to continue to get the water flowing, etc. while the boys are downstairs playing. If Tyler knows you are in the bathroom running water and he's outside the door he becomes hysterical because he wants in the bathroom since he loves water so much. So we decided for now to continue what we've been doing. Once the bath is ready, the door is shut so we can get the boys upstairs and get their clothes off w/o them being able to run into the bathroom. Tyler will jump in w/o hesitation. So we are going to establish the taking clothes of routine in our bedroom and help the boys become independent in this activity. Then we'll move on to bath and we are going to try go limit the toys that Tyler doesn't necessarily need me to help him play with until after we get washing down and through one song and then he can have his preferred toys. Once we wind down bathtub, we start to drain the water and do bubbles as an indicator that bathtime is coming to an end. Again we try to create really clear beginnigns and endings for Tyler as well as trying to ease transitions, i.e. leaving the bathtub is very hard for Tyler so draining the water and having bubbles at the end helps him understand that it's almost over. Then we have a video in the bedroom while they get their clothes on which also helps him since he's leaving a fun activity for another. We'll be adding in other independent items such as the boys bringin their own towels and washclothes into the tub with them. I just got them pails so they could do this, hopefully we'll get to decorate the pails this weekend.

Other activities we tried today as a group was ball rolling (unsucessful at this since Ben isn't very excited about rolling a ball and Tyler gets fixated on the music ball and doesn't want to share). We did do parade which engaged Tyler for short periods of time. Ben can really play the kazoo but for some reason he wasnt interested in playing it today.

We talked a lot about the differences in working with Tyler alone vs. working with Tyler with Ben around and the struggles that we face with both boys being there. She reiterated how well Tyler is doing. I reminded her that even after the study ends, we'll make sure to have one on one time for each boy so that Tyler can get the appropriate therapy he needs and Ben can get the appropriate attention he deserves.


Tuesday's session notes matched my asssessment of tyler and him being overstimulated. She commented at how well the hand washing is going and gave tips of how to fade out my hand over hand prompts into a partial prpmt and then gestures for him to complete next steps on his own.

She gave tips to help Tyler when he's overstimulated such as focusing on calming activities such as books, puzzles, shape sorter, etc. During times he's understimulated we shoudl play things like parade, swing, parachute, wheely bugs, etc.

Keep reinforcing Tyler sounds. When he says a sound, we say a sound, etc.

She also gave us a list of study approved activities that we can do with both boys which will help out dad when he's playing with the boys.

Tuesday, March 4, 2008

3/4/08

Today's session was a little strange. Tyler was overstimulated and easily frustrated today. He also didn't have very good coloring. Hopefully it's just a bad day and tomorrow will be better. STeve stayed home for the morning session so he could learn from Carrie what we are doing and what our goals are for Tyler. I think this was good for all of since Steve and I don't often have an opportunity to communicate everything thats happening with Tyler, let alone, him to see it.

I forgot to mention, we were able to get a quick video of TYler feedign himself with a fork the other day. I'd have to put the food on the fork but he'd pick it up off the table and put it in his mouth.

I know I've mentioned it 1000 times already but Autism Speaks is an amazing organization. They just released 100-day kit on their website http://www.autismspeaks.org/community/family_services/100_day_kit.php Carrie printed us a copy of this and I've only skimmed it so far but it is very very informative for anyone wanting to know more about different therapies, educations, theories, etc. I encourage everyone to read it if they have time. This may answer a lot of your questions about autism. Don't forget April is autism awareness month so the more you know the more you are able to make others aware which will lead to a more tolerable world for Tyler. Everything you do helps :)

Monday, March 3, 2008

3/3/08 -

Let me first share the humoruos information. Ben has a new word. It's Damn it! And the bad part is.. he uses it appropriately, darn kid. He said it to his truck last night. And this morning Steve tripped over the cat on the way into day care and said "damn-it cat" and of course Ben went into daycare repeating what his daddy said. We are being very careful to make sure we are watching our language now!

Ok, so just wanted to make sure that everyone knows Tyler now knows/says 3 words. Ma-Ma, Ball, Milk, he's very close to saying bye bye as well as waving. He doesn't say ball and milk very often but he has said them at appropriate times so we just really try to reinforce it when he does say it correctly.

Thursday morning Ben will be home with Tyler and I. We all get to go to social group together and then when we get home we are going to work on the bathtime routine. Should be fun! As a reminder, the goal of all "routines" is to get Tyler to engage in play, communicate (eye gaze, handpull, and gestures), and to be more independent, i.e. help with chores, wash his hands, throw away diaper, etc.