Wednesday, February 27, 2008

2/27/08

Steve went to the DAN doctor appt today and things went well. We got clarification on what supplements we start when and in what order and what to look for, etc. We also now have the bags we need to do a urine test at home and send that to the lab to test for yeast. The theory is that the immune system of kids with autism is so weak and due to that an increased medicaions, hey have a build up of yeast. Those of you who have read Jenny McCarthy's book know that her son started recovering tremendously after hey was on yeast ridding medication. So this test will determine whether or not Tyler needs to rid his body of yeast. We will be starting him on digestive enzymes to help with digestion and since we found a next step formula that is gluten adn casein free, we are going to be able to skip the calcium supplements. Both boys are back on formula in addition to the rice milk now to help give them extra calories, fat, nutrients, etc. They still have 12 month waists!

Tomorrow is a longer session to make up for Tuesday that was cancelled. So we'll be doing floor time/social group, therapy with Carrie, and then videotaping. Should be a busy day.

Tuesday, February 26, 2008

2/26/08

Today's session and videotaping were cancelled due to the weather. We got quite a bit of snow in our area. So Tyler and I spent the morning working on things with a little less pressure today than normal. The videotaping is always a little stressful for me since it happens right Carrie leaves and after I've already worked with him in the morning so keeping him engaged can be tough but somehow we manage to do it each week.

We found some bread that Tyler likes, yeah! Actually, Steve's mom found it. We've tried brown rice bread, white rice bread, pecan bread, etc. all of which you really have to work to get him to eat it but Steve's mom brought down a loaf of tapioca bread this weekend and he had a grilled cheese (with his soy cheese of course) at daycare yesterday for lunch and he loved it! Yeah, Grandma. I'm going to be looking up the brand to find out where they sell it around here and stock up our freezer!

Speaking of the diet, we have a follow up appt with our DAN doctor tomorrow (Steve goes to these) so we are going to get clarification on the types of vitamins, minerals, supplements, creams, etc. that Tyler is supposed to be on and start getting those going. We know we are behind a little on giving him what he needs but the paperwork we had wasn't quite clear on what we start when so we'll get a clearer plan of the next steps tomorrow. It's exciting, everytime we do something new we see signs for the better.. not miracle type improvements, but each step we take in the right direction gives us hope.

Love to all

Monday, February 25, 2008

2/25/08

Tyler did great on Friday. He said ball when he reached for a ball, not "ba" but ball. It was fantastic. He also said Mil(k) at daycare again on Friday and then home again this weekend.

Grandma came this weekend and she noticed some big improvements in Tyler. He is/was smiling all the time and in general just looked healthier. HIs skin tone is much better. It's hard to explain unless you see him.

I'll write more after tomorrow's session for the updates on the session notes.

Thursday, February 21, 2008

02/21/08

Tyler had some strange behavior today, he began flapping again. For those of you that do not know what flapping is, it looks like Tyler is literally flapping his arms like a bird who is flying. This is a very common autistic trait, however, we have not seen Tyler exhibit this behavior since in months. He began flapping last September and then as soon as we started with the B12, he stopped. We haven't seen it since, until this morning. My theory on this is in line with the biomedical theory, the diet is working. Sounds weird I know. Think of it this way... Tyler has spent his whole life in a fog partly because what he was eating and what it was doing to the neurtransmitters in his brain. Now, thanks to the diet, his brain is coming out of that fog and he is on sensory overload more so than normal. He's able to take in much more, another reason that therapy should be even more effective now. So according to the theory, he may exhibit more autism like systems as he adjusts to his new world.

By the way, his poo is still much much more normal than it ever was and the coloring of his skin is getting better. He's usually so pale with blue and red undertones and those undertones are starting to diminish. He's also babbling A LOT and saying new sounds which again we attribute a lot to the diet. People sometimes ask, how do you knwo what is working and what causes what.We believe each type of therapy and treatment works and it creates a path for the other treatments to work better. I.e. the diet helping him come out of fog and concentrate more during therapy so then therapy works better. We notice a change in Tyler after each thing we try and implement. Although changes are subtle, we believe that all of them together are the key to his success. Bottom line, we see improvements and honestly, I dont care how they are happening, I'm just glad they are so we are going to keep pushing forward.

As for today's session. Things were a bit different today as we introduced bathtime and talked about strategies to get Tyler engaged during bathtime. We received "rave" reviews for our video on Tuesday. Carrie was very impressed with the video and Tyler's request for parade and getting the instruments on his own. She's making a copy of the sesion for us so we can show how wonderful he is. Oh, and the daycare provider is convinced Tyler said milk yesterday as he was reaching for his milk on the counter, yeah Tyler.

Wednesday, February 20, 2008

2/20/08 - Update

Ok, I know I haven't posted in 6 days and now I'm suddently doing it twice in one day but I just can't help it. I'm so excited the department is hosting "autism awareness for first responders" training in April. I've completed the presentation and now we are just going to upload some video and voila, we are all set. The presentation will be given by our Training Chief and Carrie, the therapist from the U of M autism and communication center. If anyone wants a copy of the presentation to perhaps be used as awareness for any other organization, let me know. We are also going to do press releases regarding the training and giving away stickers to citizens to identify their homes and kids rooms that have autism to help first responders be prepared for the differences in the homes, i.e. extra locks, etc. In addition, my co-worker is a wonderful fundraiser and we are going to try to parnter with a local company to have them sponsor some tshirts for me to sell to go to the autism walk this year.

We hope to do this during April for autism awareness month and then people can wear their tshirts on Fridays and promote awareness. I'm really excited about this idea and will keep you posted on how it goes. Yes, soon I will be asking everyone to support the walk again. Autism Speaks has done WONDERS for my familly. Don't forget they co-sponsored the study that Tyler is in which is changing our lives. We hope to have video clips in the next month or so from the beginning of the study vs. now so you can see the differences. Its' amazing. Autism Speaks and the University of Michigan Autism and Communication Center rock!

2/20/08 Update

Tyler is doing great! We are continually looking for ways to "up the ante" as Carrie puts it. We did that with great success yesterday. In fact, Tyler took me by surprise and luckily we caught it all on video. From 10 - 11 each Tuesday, Tyler and I are videotaped by students at U of M (in our house). Yesterday, midway into the session, i stepped into the kitchen to make Tyler's snack. I could tell he was looking for me so I peeked around the corner to make sure he wasn't getting frustrated and he saw me and then initiated the "musical parade" routine. This is a new routine that we began about a week and a half ago in the clinic and at home. This initiation on his part, met one of his objectives. So I decided to forego the snack for a few minutes and join in the fun. A few times around the table (our parade route) Tyler stopped. He went over to the book shelf w hich has bins of toys in it (so he has to ask for toys rather than just get them himself) and he pulled out the bin with the musical instruments! I didn't say or do anything in reference to us missing the instruments, he just realized they were missing and went over to retrieve them so we could continue the parade with music. I WAS THRILLED! He's never pulled bins off the shelf to play with the contents, let alone realize that something was missing and initiate this effort no his own.

He's also been making more new sounds such as "la" "sh".... which I actually think he is using in for his version of "push"...... We use that command a lot when playing with the wheely bugs. His eye contact has been fantastic.

One tip for everyone working with Tyler is to imitate whatever sounds he is making. if he says "da-da" then you say da-da and just keep saying the sounds back to him to try to get back and forth conversation.

Thursday we are going to try to start bathtime as a routine. Carrie will help us find ways to get Tyler to interact with us in the bathtub. Should be fun.

Thursday, February 14, 2008

2/14/08 - Happy Valentines Day

Tyler is back to normal, yeah! We are very happy to have our little boy back. So it's been a busy week which is why I haven't had an opportunity to give updates. Yesterday, I had an appt with the school district to review the report and update they wrote for Tyler's services. That appt. went very well. They really drove home the fact that we are very luck to have caught on to things at such an early age and to have an autism diagnosis is even better. They don't usually see kids until preschool age. They also shared that the team (the team consists of: Social Worker, Psychologist, Physical Therapist, Occupational Therapist, Speech Pathologist, and Autism expert) was very impressed at how much we are doing very for Tyler. They said, typically the only services parents receive are through the school district and many times the school distriect is the one pointing out what is wrong and what needs to happen. This conversation made me a little teary for sure.

A decision was made to add Occupational Therapy on in addition to the speech therapy. Once this first portion of the study ends in July, we will also be bumping up speech therapy to twice a week instead of once a week. Carrie, the interventionist, will soon be doing a consult at one of the speech therapy sessions to ensure we are all working on the same page.

In addition to this, Tyler had his monthly assessment for the study yesterday and the evaluator was definetly seeing a difference in him. What's more impressive, is that people other than professionals are noticing changes in our little guy. A mother at social group today noticed Tyler saying "ma-ma"... she said, i don't know that I've ever heard him say Ma ma so distinctly of which I responded (with a huge smile) he just started last week:) Daycare is noticing how much he wants to play with the other kids now and joins in activities. All the kids run around the island in the kitchen and Tyler joins in the fun. The skills Tyler is learning at home with me, is crossing over into other areas of his life. He took one of hte mom's hands in social group today to get her to play ring around the rosie with us. On Saturday, Grandma noticed Ben and Tyler playing together! Ben actually initiated the play (running around the table using a pull toy so Tyler would chase him).

Ok so back to the study. I spoke this morning to Carrie about her view on Tyler's progress. She agrees that he is doing very well and moving through the objectives very quickly. In fact, Florida State Univiersity (partner with U of M fo rhet study) overseen by Amy Wethersby (huge in the autism world) view the tapes of Tyler and were really impressed at how quickly he picks up on things. They want us to really push him because he has so much potential. More great news! I asked from teh standpoint of Tyler and I, if we seem to be doing enough, doing things right, etc. and she agreed. She's also very happy with the progress. We are going to be adding some new routines and new game play to keep things moving. Hopefully soon Tyler will be helping mom with cleaning up the table and vaccuming.

General Feedback from Friday's Session: Although Tyler had a more difficult week than usual, the caregiver did an excellent job of keeping hte bar raised while putting in supports necessary to make activities successful. It is not at all unusual for children with ASD to experience these peaks and valleys in their progress. However, even during difficult weeks, Tyler can still remain successful with the right amount of support just as he did this week. Keep up the great work!

Friday, February 8, 2008

2/8/08 Friday Update

Family Update: Tyler had his weekly meeting at the clinic this morning and did very well. He seems to be almost back to normal now. The therapist reminded me that it's very common to go through ups and downs with children of autism. It's heartbreaking to see the regression after making so much progress but she said usually within a week to two weeks you'll see a sudden resurgance and a gain in progress. We all just have to keep the bigger picture in mind. This week was very tough on Steve and I emotionally. We are happy Tyler is coming around. Tyler continues to say Ma-Ma and vocalized what sounded like ball today when he was reaching for a ball but we can't be sure.

Grandma is coming again this weekend and staying the night so mom and dad can get another date. Have I mentioned how much we love Grandma!

Autism Information: Something for everyone to remember is that a child with autism isn't being stubborn or refusing to speak, they literally can't speak. There are many adults who have a high functioning form of autism who can recall their younger days of not being able to speak and how frustrating it was. They had so much to say and nothing would come out. I think of this often when Ben is asking me for something or wanting something, i.e. he wants his hood off. I thought how frustrating it must be to be Tyler and nto be able to ask for such simple things.

April is Autism Awareness month so you'll all be seeing a lot of media regarding autism soon. Please remember that there is a ton of information as well as different thoughts about causes, treatments, etc. No one child with autism is the same, that is why it's called a spectrum. I am working with the Training Chief and Carrie the interventionist to put together "autism awareness training for first responders" to be taught to our firefighters during the month of April. We are also hoping to put out some community awareness about autism and for peopel who have a family member with autism in their home, how to properly protect that family member and firefighters in the case of emergency.


Also, just a reminder, our main focus right now, is eye contact along with the hand pull. Out of every 3 - 4 hand pulls we need to make sure that Tyler is giving eye contact at least once. We don't wnat to force him to do it each time as they may be overly frustrating for him.

Here are the session notes from Thursday:

Child Aquisition goals (done at least 2 times): Eight Objectives
Child Mastered goals (done at least 3 times): Eight Objectices
Caregiver Aquisition goals: five objectives
Caregiver Mastered goals: Twelve objectices


Song Routine: We practicied ring around the rosie and once again Tyler requested a "down" with a gentle push directed towards the caregiver when she paused at that point in the song. He also demonstrated more consistent eye contact throughout this routine. THe caregiver also did an excelelnt job of holding TYler to one more turn in the routine rather than alowing him to just walk away. The caregiver should continue to implement the strategies listed above withthe intent to generalize these strategies to other song routines such as row your boat, head shoulders, etc.

Snack Routine Feedback: The caregiver did a nice job of providing Tyler with supports to help him maintain regulation (.i.e. vibrating toothbrush) and in addition to offering himn choices and honoring refusals, Tyler was doing a great job during the snack routine. He made very clear choices and was able to maintain a regulated state despite not having a high interest in snack time today.

Scooter Routine Feedback: The wheely bugs were an activity today which is a fairly new routine. Tyler demonstrated numerous requests in addition to pushing and pulling skills. The caregiver did an excellent job of following Tyler's lead and providing directions, i..e "push" and "pull" in context. The caregiver shoudl continue to implement these strategies as listed above with a particular focus on intermittently holding out for eye contact.

Additional parent strategies: Following a "look" prompt with pointing. Once a routine has been established, the caregiver might take onf o the preferred items or toys and place it just out of Tyler's sight. THe caregiver should then wait for Tyler to start to look for the object and then prompt "look" with a point towards the object.

Continue to adjust the difficulty of a task based on Tyler's arousal level. If he is agitated you may decrease the difficulty and if he is really well regularted you may incrase the difficulty.

Tuesday, February 5, 2008

2/5/08

Just a quick update to say that Tyler still isn't himself today. he had trouble sleeping again last night. Everyone is in agreement that he is likely suffering from gluten withdrawls and that they should subside soon. The sesstion today was tailored a bit since Tyler frustrated easily. The good news, is that he's definetly saying Ma-Ma.. which when you worry that your child may never say a single word, is honestly the best thing a mother could ever hear.

I hope this website helps everyone understand better what Tyler and our family is going through. I hope you all have open hearts and open minds as we continue our journey to heal our son. We have done extensive research and believe what we are doing is the best for Tyler and our family. None of it is easy, but it is all worth it. Watch the video below and you'll see. There is hope....... we hold on to that every day.

On another note.. I found a good video on You Tube which shows some before and after photos of a child who was diagnosed with autism at age 2.
http://www.youtube.com/watch?v=QWG-SWQ3vSs The corresponding story for the video is below.
"My son was diagnosed with Autism at age 2 and m... (more)
Added: August 18, 2007
My son was diagnosed with Autism at age 2 and my daughter does not have Autism but she has gastrointestinal issues. I made this video to show that Autism can be helped. You'll see the before and afters of both kids and you'll see how much our non verbal aggressive little guy has turned into a wonderful healthy little boy with the help of the specific carbohydrate diet, vitamins, supplements, chelation therapy, ABA, Occupational and Speech therapy. "

Monday, February 4, 2008

2/4/08 Update

Speech therapy was cancelled for the morning due to weather, school delays, etc. Now we know it was for the best anyway. Daycare called when we were on our way to work to tell us Tyler was vomiting and felt feverish. Steve is going home to stay with him this morning and then I'll take the afternoon. We have a busy week with doctors appts, big work meetings, and monthly evaluations so the timing is bad but I guess there is never a "good" time for an illness. Tyler was fine yesterday we took the kids to play at the mall and then actually ate out at a restaurant in the mall (we brought all of Tyler's food) so it was nice. He seemed a little "foggy" yesterday but other than that, he was ok until late last night. He was upset and having trouble sleeping. We finally got him to sleep around 2:30 and thought maybe it was his teeth. But then teh phone call from daycare this morning means something else is going on. We are wondering if he may be going through gluten withdrawls. He hasn't had gluten in almost a week which is when they say that the withdrawls start to set in which can be fever, etc. Hopefully it will subside soon if that's the case. If it's the stomach flu, we are obviously all in trouble. Anyway, that's all for now.

Friday, February 1, 2008

GF/CF Update 2/1/08

The clinic session was cancelled today due to weather. Mom is going to take advantage of the extra time and take a few hours of ffrom work to get some of Tyler's grocery shopping done.


Tyler has been completely casein free for over a week and he's been gluten free for a few days (although we aren't 100% committed to the gluten free yet; wanting to get more options and making sure his body ha time to adjust w/o going through major gluten withdrawls). Anyway, we are seeing major improvements in his bowel movements. Without going into too much detail, it's the first time we've (mom, dad, daycare provider) seen normal bowel movements in Tyler. Typically his poo looks like little rabbit turds and never seems that he ever gets it all out. It's now much more normal and looks very similar to Ben's. Yes, I know gross, but this is great news for us because it means, if anything, teh diet is improving his digestive system. If the theory holds true... this will lead to improvements in his biochemistry which effect his neurological processes. The theory is that atusm and it's symptoms result from the incomplete breakdown of peptides derived from foods that contain gluten adn casein and also to excessive absroption of the peptides. The presence of these peptides cause disruption ito the biochemical and neuroregulatory processes in the brain. Fingers crossed :)

He also doesn't seem to be minding a bit. Both boys like the rice milk. Tyler is eating many of the same things that we eat, we just alter them for his diet where necessary. He still gets chicken nuggets, yogurt, applesauce and spaghetti. His ultimate favorite food is pizza and we did try a brand this weekend htat he wasn't so fond of, so maybe we'll try again in a few weeks and then if not, we'll try to make one from scratch and see if that works. All and all, other than the time spent shopping and planning, the diet has been pretty smooth. Once we become more experienced and have more staples in our house to start baking and freezing it will become even easier.