Week 45

Here is a great shot of Dawn and the kids celeberating Dawn's Birthday just before the Winter Break. 


Celebrating Dawn's Birthday

Vacation!

This past week we took the kids on a world-wind trip. We started with an 8 hour drive to Pittsburgh, PA to visit Aunt Anne, Uncle Chris, Megan, and Kate. Ryan and Julia did great on the trip. We only stopped once for a quick bathroom break and then right back into the car. We finally got into Pittsburgh around 6:00 PM and then went out to dinner. Of course the restaurant was extremely busy and we had to wait, but Ryan did great waiting. We had to stay at a hotel and since it was a short stay we all stayed in the same room. He did great but did have a little difficulty understanding that he could not sleep in the middle of the bed since we all had to share. We had a great time and Ryan's cousin Megan loves him! She spent the majority of the time wanting to hold his hand where ever we went and wanted to show Ryan her train set. We visited the incline in Pittsburgh, that goes up and down the side of a huge hill that over looks the city and Heinz field were the Steelers play. Ryan loved it and we have a picture of both Ryan and Julia with big smiles in the car on the incline. We then visited the children's museum and had a blast. There was a huge layout of the Pittsburgh area with trains going around the exhibit and he ran around the table telling everyone what to look at next.


Ryan and Julia on the Incline in Pittsburgh



Ryan and Megan looking out over the city of Pittsburgh



Both fast asleep on the way to the Latrobe Airport



Singing Happy Birthday to Kate and Dawn

Each night the kids got to bed late and they handled it great. Julia is our night owl but Ryan follows the simple philosophy that if the sun is up, then he is up and if the sun is down, then he is down. However, he handled the late bed time in perfect stride. He had a blast playing with his cousins and had a great time with no meltdowns.

We then flew out of the Arnold Palmer Airport in Latrobe, PA in a snow storm to Fort Laurerdale, FL to visit Dawn's grandmother, Grandma Mille. Ryan loved the airplane ride. He was so engrossed with the little card that the airline attendants go over. He clipped it to the tray table and studied it for a good 20 minutes. When we were about to land he asked if we were landing on the water? When he found out that we would be landing on the runway he announced to our area that were not landing in the water but on the runway.

We did not land until 8:40 PM and did not get our car until 9:30 PM. To get to the car rental place was an adventure to begin with. We had to walk to a bus stop, take the bus to the airport car rental garage, then wait for the car rental van to pick us up to drive us to their location. Through it all Ryan was great and found it all a big adventure. We did not get to Grandma Millie's condo until 10:30 PM.



Happy to be in Fort Lauderdale, FL! 

 

Excited to be at Hallendale Beach! 



Ryan and Julia with their Great Grandmother Millie.

Reading the safety card! 

Studying the card! 

We spent the next few days driving all over the place. We found a store that sold organic and GFCF food items and then spent the rest of the first day at the pool. We were the only ones in the pool and this was the first time that he felt comfortable to be in the pool without his swimmies. It was nice feeling comfortable being able to watch them from the side of the pool and not having to be on top of them in the water. The same went for the next day when we went to Hallendale Beach. They both played for hours at the edge of the ocean while we were able to relax just watching them play. The second evening we went to visit my Aunt Mary and Uncle Bill to have dinner. The only bad part of driving in Southern Florida is the traffic. It took us an hour and a half to drive 25 miles. Another late night but he did great.

The kids with Phil's Aunt Mary and Uncle Bill

 

The next day we found a Children's Museum in Fort Lauderdale that they loved. This is a video of a huge gravity clock in the front of the museum that he loved. They had all sorts of hands-on exhibits that they both enjoyed. They spent over an hour in one place that had an exhibit that allowed you to pick oranges from a tree, put them in a wooden case, and then put them onto a conveyor belt that put them back on the tree. He spent the majority of the time playing with this exhibit and the other kids came into this area. He shared and pretended to play both with his imaginary scenario and theirs. It was great to see.

On the trip home it was another long day. We got to the airport with plenty of time considering we had to do the entire process in reverse and boarded the plane without too much hassle through security. They did have to test each bottle of his medicine but they did not make a huge fuss about it and the TSA agents were very pleasant about the whole thing. However, the plane had a mechanical issue that caused us to have to return to the gate and get off to wait for them to fix the issue. This delayed us for about 2 hours but we finally landed back in Latrobe around 8:00 PM.

Ryan handled the whole experience wonderfully. He rolled with the delays, the different schedules, and all the little expereinces that could cause a child with Autism to have major metldowns. We have an appointment with Dr. Bock in 2 weeks and we can not wait to give him the report about how he did on this trip. Before this diet and treatments this trip would have been a disaster. Both Dawn and I were thinking that we probably would not have attempted this trip but Ryan was fantastic.  We were so impressed with his patience and flexibility!

Below is a clip of Ryan having fun at the Childrens' Musuem and one of him hanging with his sister and cousin. 

PC

Week 44

Asking for prayers this week but for someone else...

In lieu of the time you would have spent on our blog this week, we are asking that you read about a little three year old boy named Ty Louis Campbell.  He is fighting a rare and aggressive cancer.  I choose "fighting" because that is exactly what he is doing.  We've been following this blog since the fall and it is impossible to read without shedding tears.  It is also impossible to read without reflecting on your life and appreciating what you have.  Whenever I complain about something I feel so guilty, more so than ever since Ty has entered my virtual world.  Just looking at his picture and knowing what he is going through certainly helps to put things into perspective. 

Here's the link to Ty's blog:  http://tylouis.blogspot.com/ Please read Ty's story and keep him in your prayers.  Your prayers are working for Ryan... I hope they do the same for Ty because he needs a miracle!  May God bless Ty and his family!

DC

Week 43

Happy Valentine's Day everyone!

In the spirit of Valentine's Day and LOVE, here is a video of Ryan with his cousins Amelia and Alyssa singing a song called "I Love My Nonna and My Papa", taught to them by none other than their nonna!  Be careful, if you watch it too many times, the song gets addicting!

And what would a Valentine's celebration be without lots of sweets???

Ryan enjoyed his special cake and cupcakes!

Unfortunately this week was not all sweets and smiles.  Ryan had some tough days.  We received a couple of bad reports from school revolving around Ryan having difficulty following directions.  After reading one of the reports, I asked him about what happened at school and he hit me and ran to sulk in his room.  We noticed "off" behaviors at home as well.  He had difficulty sharing and displayed lots of odd behaviors like running around in a zone, talking to himself, and making weird movements with his hands.  We haven't seen this kind of Ryan in so long and to be honest, it scared me a little bit.  Even his appetite at dinner was not normal and several days during the week his cheeks were red.  This led us to believe that he ate something that he shouldn't have.  But what??? 

I received the following information from the mother of one of my students.  Here is a blurb and a link for an upcoming conference, and also the link to an online newsletter called Autism Spectrum News.

2011 Young Child Expo & Conference brings together top leaders to provide the latest information about essential topics in early childhood development. Early childhood professionals and parents will learn also about services, resources, and products to help all children reach their full potential. In one unique event, this conference integrates learning about typically developing children as well as those with special needs, including autism.  http://www.youngchildexpo.com/

Here's the link to the newsletter: http://www.mhnews-autism.org/

Ryan and Thomas watching a Thomas the Tank video.

Here are some pictures that I took last week but did not post on last week's blog.  I had experimented with making GF bread for the first time. Ryan was so excited as it was baking. He kept asking what the smell was and if he could eat it.

Catching a whiff while it was cooling down.

It was delicious. We had some warm and there was plenty left over to slice and store for Ryan to eat during the week.

Last week I also made a huge GFCF and egg-free chocolate chip cookie for the kids.  I used a recipe from a cookbook I received as a Christmas gift from one of my students.  It's called The Food Allergy Mama's Baking Book by Kelly Rudnicki.  The recipes are all dairy, egg, and and nut free.  They are not gluten free but I am able to swap out the flour called for in the recipe with some GF flour varieties and Xantham gum.

DC

Week 42

Ryan's class at PARC participated in a mini Olympics among their students.  Ryan was very excited to come home each day and tell us things such as how you are supposed to line up to do a relay race.  He brought home a medal and two award certificates.


Ryan received a medal and certificates for the Relay Race and the Javelin Throw



YES, Ryan got a haircut this week!  He let me cut it with the electric clippers!  Afterwards he looked in the mirror and said, "This is a bad haircut, mom!"  He's also been keeping his coat on with the hood up when we see people we know because he doesn't want them to see his hair, but then when they do they say how handsome he looks and he gets a big smile on his face.  It is really short but not as short as a buzz cut.  I was so surprised that he let me use the buzzer, especially near his ears.  But he did a great job staying still (granted he was watching a movie too so that helped!).  I'm hoping that if he'll let me use the machine the next time too that one day soon he can get his first professional looking haircut at a barber shop.  While I seem to be improving my haircutting skills, I do feel bad when his haircuts come out looking less than perfect.

On one of our numerous snow days I was peeling Clementines and asked Ryan if he wanted a piece.  He then proceeded to jam his straw into it so that he could get the juice out.  When I told him that wasn't how you eat it, he took out the OJ carton and replied, "Like this mom." 

An "A" for persistence and originality!

And once he realized he wasn't getting any juice out of the whole orange, he tried with the piece I gave him.  Of course I captured it on video!

A friend of mine alerted us that Fox News held a segment regarding how diet is used to reverse the effects of Autism.  And Ryan's DAN doctor, Dr. Bock, was interviewed. 
Here's the link:  Can Diet Reverse Effects of Autism?
We had some trouble with the link working so if you are unable to connect, go to foxnews.com and in the search box type in the title "Can Diet Reverse Effects of Autism" and find the article that way. 


Here's what happens when you have at least 2 snow days a week for the past 4 weeks.  Here's Julia occupying herself. 

Ryan joins in at the end of this video after we convinced him to not dance naked in front of the camera anymore.

Not really understanding the concept of musical chairs but they played this way for more than 10 minutes. It tired the heck out of them and I was able to grade papers while I randomly pushed the play/pause button on the music videos on TV.

I'm not sure if I've mentioned this before in a previous blog, but I often worry about Ryan being bullied and made fun of in school.  Working in a school I see too often how cruel kids can be at times and how differences aren't always tolerated.  Through friends on Facebook I was made aware of the lyrics of a song called "Don't Laugh at Me" by Mark Wills.  Here is a link to his video on You Tube.  It sends a great message.  http://www.youtube.com/watch?v=FVjbo8dW9c8
My school is currently doing a big anti-bullying campaign and I am again trying to get an event going where a presentation can be made by Jesse Saperstein (remember him from our week 27 blog post?).

DC