8/29/08

You win some, you lose some. Tyler bit Ben pretty hard on the arm last night, enough to leave both upper and lower teeth marks, poor guy. We aren't exactly sure what happend but we assume they were paying cars and Ben had both of them adn woudn't give one to Tyler so Tyler bit him. Darn it. Ok, so we know the brotherly love will come and go right, it happens with all siblings.

On a lighter note, Tyler's Angels is the #1 fundraising team right now and Steve is the #1 fundraiser. One of his clients sent us a big donation. THANKS! !!!!!

8/27/08

Great news. When Ben woke up this morning, he said "I want to play cars with Tyler!" Apparently last night, Dad, Tyler and Ben all played cars for 30 minutes straight. Tyler was engaged with Ben and Dad the entire time. The boys were even hugging each other, Ben hugging back! YEAH.. over 2 years in the making but looks like that brotherly love is finally coming to fruition!

WOO HOOO!

8/26/08

Yeah, playgroup went a lot better today. The instructors helped by changing things up a bit so that Tyler's frustration would be limited. It really worked.

we are getting ready to start those changes we mentioned a few weeks ago to rid Tyler's body of yeast. We've started gathering all the new medications and doing the necessary research into the diet. We still have a few unanswered questions, but the doctor said to transition slowly so we'll figure those out as we go. What I know now is that I need to change his bread. We don't use bread often so hopefully the taste change won't be too big a deal, especially since we mainly use it for french toast and with syrup (although we have to get special syrup now) hopefully it won't be too yucky. Also, one of our staple snack foods are GF pretzels ($7 per bag!!) and those will be a big no-no so I need to find something to replace those. They are so simple to pack up and take on the road. I started reviewing my GFCF cookbook last night cause they have many recipes for yeast free too so I'm hoping to find some snacky foods in there I can make up in large batches and then take with us on the road. I've found alternatives to ketch up too and we need to replace applejuice and sugar. Our DAN doc said no splenda but the cook book said splenda ok so we'll play it by ear and see what seems to work. I need to transition both boys onto juice with splenda (not regular sugar) and then we'll just keep it watered down like we do now. I hear almond choclolate milk is good (expensive though) so I'm hoping that can replace applesause as a way to get all the supplements in him. I guess we'll just make our own pear sauce but first we need to get another mini food processor, ours broke. But we did start to get him pear flavored applesauce to get him ready for the transition. Ok, sorry, I'm rambling here. Anyway, we are actively working towards ridding his body of yeast.

Grandma was with us for an extended period of time this weekend, thanks grandma. She actually watched the boys on Monday for us because our daycare was on vacation. Over the weekend, Carrie visited to help Grandma and Steve with feeding time and any other concerns they had in terms of working with Tyler. The meeting went very well. It also gave mom some time to spend alone with Ben. we went to the museum and grocery shopping, Ben was great and I bet he really enjoyed the mom time. We all went to the park on Sunday and we worked with Tyler on gross motor skills, and then talking/oral motor stuff/word approximations during swinging. Everything can be an occasion to work with Tyler once your mind is trained that way. AND... Ben finally went down the big slide by himself! He's been scared to do that until now.

P.S. Tyler still has a cough, Ben's finally seems to be going away. Will we ever all be healthy at the same time again?

That's about all I have for now. Tyler's Angels is in 3rd place for fundraising right now, yeah!

8/21/08 Update

Carrie will be coming this weekend (we've missed her) to help Daddy and Grandma learn how to foster communication with Tyler during mealtimes which will give mom and ben a chance to have some alone time. Grandma is staying through til Monday to help us out as daycare is on vacation right now, thanks Grandma!

Tyler and Ben were playing together again this morning. Ben was hiding behind the curtain and Tyler would wait for Ben to appear and I'd shout "boo" and everyone laugh. It's such a treat to see them interact. Tyler is also hugging Ben more, in general, Tyler is definitely liking his hugs lately. Ben has been resisting the hugs (whining when Tyler hugs him) so I'm trying to work with him on that. You can't blame him cause there aer times when Tyler gets that close that he hurts ben by pulling his hair or scratching him so I'd be leery too. I also asked that Steve mention this to carrie so she can give us her expert advice as to how to make Ben enjoy his hug a bit more. What I'm trying to do is really really praise them whent hey do hug and I also join in so I can be an intermediary so Ben feels more comfortable/safe but we are all still hugging. It seemed to work this morning anyway.

Also, I'm sure you remember me talking about the Judson Center before http://www.judsoncenter.org/page.php?catID=118&page=What%20We%20Do&id=7&catName=Autism%20Connections they are a great local organization. I've also talked before in the blog about Stephanie Harlan before who is the Director for the Judson Center. Her son Justin is recovered from autism and he's just an amazing inspiration and so is she. She never gave up no matter what the cost and her hard work paid off. Justin is such an inspiration. Anyway, they host an annual Duffy Adams 5K run to benefit the Judson Center. It was the first race I ever ran last year and am planning to do it again this year. They also have a 5K walk or a 1K walk; if anyone is interested in signing up go to http://www.active.com/page/Event_Details.htm?event_id=1560186&assetId=6e42a340-4303-4aa7-a97d-6dc56913090c it goes to a very good cause.

8/20/08

I received a really good compliment today, well really it's a compliement for Carrie because she did such a wonderful job of teaching me. I sent the playgroup leader Tyler's presentation to show her how much progress he's made since the beginning. This was her response:

Wow, this is an amazing story!!! I am so happy for you and your family. Watching you today interact with Tyler was a joy. It is clear that he will continue on his way into the world. I am sure your presentation and just seeing you in action will be an inspiration for other families.

The structure at playgroup is to be group activities at the beginning and the end but then the in-between play time is just supposed to be between the parent and child and then the leaders of the playgroup kind of oversee the play and give feedback along the way on how to improve and get more chances for communication. The leader, Dorte, is a Speech Pathologist. So when she says "watching you today interact with Ty ler was ajob, and that it is clear he will continue on his way into the world" well...I'm not sure it gets much better than that. Basically that says, Mom, you are doing all that you can do and doing a great job. It's really great to hear professionals say things like that because obviously they know a lot more than I do! So once again.. THANK YOU CARRIE for all you taught me.

8/19/08

This morning was the first play group session for the second part of the study. Although I was a little anxious about how things were going to go, I felt comfort in knowing that Tyler was already familiar with the room from our Friday clinic sessions. Right now there are only 2 families in the group and the other little girl was late so it was just Tyler at first with 3 staff members from U of M. He did great at first showing off his communication skills.. sounds/gestures/eye contact. He also did well at handling frustration. I was going over some paperwork with the leader of the play group and another person was trying to engage Tyler in a game. It was frustrating him and he kept coming tome gritting his teeth and I'd give him squeezes, but he was able to maintain his frustration there and go about with the activity. This was great because it was all new people in the room and he kept seeking comfort from me but continuing the activity.

They had a sensory table set up with beans. Beans are one of his favorite activities but it can sometimes be hard to keep him engaged socially because he likes them so much. Around this time the other girl showed up and things got a bit trickier after that. Tyler didnt' like someone else playing with the beans and got a little frustrated but then seemed to want to go back and play but would get frustrated again. I requested that beans be an activity we get out towards the end of the play group vs. the beginning. It's very hard for me to get him to engage as I said before as well as get him to end the activity on a good note, especially when there isn't something more motivating for me to transition him too.

Which brings me to what happend today. We were all trying to end the bean activity to move towards a group activity; parachute. I gave Tyler many warnings that we'd be ending soon and then tried to transition as best as possible but there wasn';t much available yet (they were transitioning activities in and out of the room), So I held him and tried to swing him around in the air and up and down which usually he likes but it wasn't working today and then wham! I got a big head butt to the temple...ouch... luckily right after that they had the parachute ready and we started to play parachute. Then we moved to ring around the Rosie. Tyler is used to pushing down the players on the "all fall down" part" of the song. anyway, he got frustrated when everyone fell down w/o his pushing them and that led him down a spiral of over stimulation. I tried to calm him with juice. They were doing a calming group activity with books and stuffed animals but if Tyler isn't actually touching the book, he isn't interested in them yet, plus he doesn't sit still long enough to gain interest! So I kind of tried to keep him playing around the rest of the group and do things in reference to the book that i thought he'd enjoy like making duck sound when that part of the book came and making doggie sounds, etc. but this wasn't really working either. He lead me to the door at point which is his way of telling me he wants to go. I told him we'd go soon. Anyway, when class ended he was definitely ready to go. On our way out, he was walking at first but just seemed beside himself and wanted up so I picked him up and we were walking out and another head butt to the mouth, ouch...didn't see that one coming since he wanted to be picked up. Tyler was definitely not happy that we stayed at playgroup as long as we did and he wanted to let me know. Can't blame him for communicating right! Mom gave him some juice which not only helped to calm him down but also preventing me from receiving any further injury. We got out to the parking lot to an eagerly waiting dad who was taking him back to daycare.

Tyler also is beginning to get a cough, Ben's is still not gone and I feel like we are no in this vicious cycle of illnesses/injury that we can't get of. We haven't all been healthy at the same time in over 6 weeks. I'm hoping it is just pollen in the air that's bothering Tyler right now.

Go Tyler's Angels. Tyler's Angels are currently in 4th place for fundraising for the Autism Speaks Walk, yeah! Steve is the 5th place fundraiser!

8/18/08

This weekend was a reminder of how far we've come and just how far we have to go. Went to the sprinkler/fountain park yesterday. After playing in the fountains for a while, Tyler started running around the perimeter (which is a big circle) of the fountains laughing. You all may think this is normal, however, I know and knew that if I had tried to get him to go in the opposite direction, he'd strongly resist, so that's exactly what I did (I swear I"m not mean, that's what I'm supposed to do). So I ran out a few times and said stop and got him to giggle thinking stop and go was funny but he wasn't really wanting to go in a different direction, so picked him up and turned him around and bounced him in the other direction, singing and laughing and trying to make it fun. As soon as I let him go, he immediately, bent down and went to bang his forehead into the concrete. Normally I'm prepared for this which I was but he usually gives a bit more warning so I can get into proper position, this time he just went quickly and luckily I was able to catch him. Tyler loves to run in circles and if at all possible, it's not something we should let him do freely, we should either get him to engage in other activities or make the running around into an activity of some sort where he's interacting with you and he has an active role in the activity. However, he came out of the near head bang very well and didn't seem to be too bothered by it all which was great.

This morning I witnessed something fantastic. I dropped him off at daycare and he was very attached to mom this morning, wouldn't let go of me and kept pulling me to different places in the house and then he pulls down on your arm which means he wants you to sit down. he pulled me over to the vacuum cleaner. He loves the vacuum and we've worked on this as a routine, in fact, I've actually gotten a bit of constructive criticism in regards to our vacuum routine in the beginning because it was too entertaining and not enough of an interaction/role for Tyler. That really wasn't that long ago, i mean in terms of months, maybe 3 or 4 at most? What I tried to do in the beginning is to get him to say "on" and I was taught to turn it off about every 10 seconds or so and model the word on and wait for him to say it or some sort of verbalization before turning it on. Ok, so back to what happen today. He brought me to the vacuum and pulled my arm down and probably about 15 times said as loud as he could "ahh, ahhh, ahhhh, ahhh, ahhh" No prompting, no anything, he just was saying on and using vocal communication, eye contact, and a gesture to get me to respond. It was killing me not to turn the vacuum on but their son was sleeping on the couch right next to the vacuum. I said "On" back and said we can't turn it on now and gave him lots of praise for talking.and tell me what he wants and then found something else for him to play with. I was a very happy mama & therapist today!