Week 78

This week we were finally able to play a scheduled soccer game.  This was Ryan's first game and he did well.  He kept talking to the other players and was not that aggressive trying to get the ball.  At the end of the game he was very upset.  He hit himself in the head numerous times, and started crying into his coaches's arms.  I had to run onto the field to get him and bring him back to the sidelines.  He was disappointed that he did not score a goal.  He told us that he had "a little bit of fun" at the game.  However, he did stay in the entire game and did not walk off when he got frustrated like he does at practice.  Hopefully with time he will get better and he will score a goal so that he can be proud of himself! In the meantime we will keep telling him how proud we are of him that he has been sticking with this! 

I was videotaping parts of the game and did record him hitting himself and having a breakdown in the middle of the field.  It was very upsetting to me so I will not share that video here, but I will share this clip instead.  While Ryan is certainly not as aggressive as some of the other kids, he does seem into the game.

Next Sunday Ryan will be in his first wedding.  He is walking down the isle with his cousin, Amelia.  We had the rehearsal on Saturday and he did fantastic.  He followed directions and he listened extremely well. The wedding planner and the Priest even made a mistake and had Ryan do something that was incorrect. The old Ryan would have had a difficult time understanding the mistake but he simply walked back to where they wanted him without missing a beat.  Hopefully next week he will do well with a church full of people.

Frakie, Alyssa, Ryan, Amelia, and Julia... all in the bridal party!

Walkig down the aisle.  A little zombie-ish but we'll work on getting him to smile this week.

One of our biggest fears with Ryan was that he was not going to make friends.  A child with Autism has difficulty reading people and understanding social interactions.  So far Ryan seems to be making the transition into the world of play dates just fine.  We had a play date today with a young boy from his old school, PARC.  His mom called us a few weeks ago to set something up because their son was constantly asking for Ryan to come over.  We went today and they had a blast playing together.  This Tuesday James from his Kindergarten class is coming over to our house for a play date.  This is the boy that had the birthday party a couple of weeks ago.  James actually left a message on our answering machine asking if he could come over one day and play with Ryan.  I guess we all worry that our children will have difficultly making friends on their own, but so far Ryan seems to be doing okay.

When we were visiting Pittsburgh, Aunt Anne took us to a Pick-your-own orchard that has a gluten free specialty shop.  We were able to find French bread that he really likes and that tastes really good.  He liked it so much that we made it a point to try to find it this week at Nature's Pantry.  Lucky for us they have this and we are going to pack it with us when we go to the wedding next week.  This has been one of the biggest stumbling blocks when we go out to eat.  Most restaurants bring bread to the table and Ryan has a difficult time understanding that this is not for him, especially when he is hungry.  Now that we have this bread, we can plan better and bring our own supply.  Below is a picture of the bread.   The brand is Schar and we highly recommend you try it if you are on a GF diet.

Speaking of Pittsburgh, as we pulled out of the driveway waving back to Aunt Anne, Megan, and Kate, Ryan says, "I will miss them."  Awww!!! 

Conversation as I put him to bed the other night.
Me: Good night, sweetheart.
Ryan: Good night, my beautiful love!
Double awwww!!!!

Phil and I want to thank everyone who read the blog, especially those who converse with us about it.  Your insight into what you ejoy reading and the changes you notice in Ryan are refreshing and it's what keeps us going each week.  After last Sunday's blog we received our more than usual "fan mail" this week, with lots of people encouraging us to keep it going, but also understanding and appreciating the time we put into writing it each week.  I want to share one of the messages we received this week.  It comes from my former high school math teacher, Ms. Pfleger:

I do want to let you know that I read your blog about Ryan's journey each week. I need to say that it has been a privilege to follow his progress. I really see a difference in Ryan through pictures even though I am not personally acquainted with him. If I compare this week's picture with his Aunt Anne to some of the first pictures that you posted, I see a much happier boy with a real smile on his face not a forced smile because someone is expecting him to smile for a picture. I have to believe that the course that you and Phil have chosen to help Ryan is the right one. Take care and God bless.

May God bless all of YOU who are the backbone behind what we do!
Have a great week!
 
DC & PC

Week 77

So it is Sunday evening and we're in Pittsburgh.  We had an extremely busy weekend and the last thing I wanted to do was sit here and type this blog.  In fact, I just finished telling Phil that we really need to stop writing the blog because most weeks it tends to send a lot of stress my way... worrying if I have taken enough videos and pictures and straining to remember what actually happened that we want to share with everyone.  At 9pm I begrudgingly sat down to download pictures off of my camera and write week 77's entry.  Editing the pictures took about 15 minutes, and stalling to actually do the writing I checked my email.  And wouldn't you know I received an email from a former student and she mentions how she still reads the blog and is happy to hear about how Ryan is doing.  Gosh, what timing for that email to come when just an hour ago I wanted to give this up altogether.  I guess we can't do that just yet (but be prepared because it will happen in the foreseeable future!)  But not tonight, so here it goes...

Let's start with Pittsburgh since I already mentioned we are here.  We visited Phil's sister and her family for the weekend.  We feel very lucky that the kids are for the most part patient in the car since it is an 8-hour trip to get here.  We've had a busy couple of days.  Here are some of the pictures highlighting our visit. 

The kids playing together.

Shucking corn with Uncle Chris

Ryan, Kate, Julia, and Megan... they love spending time together!



Ryan with Aunt Anne, his godmother.



At the park.

Even before our trip to Pittsburgh, this week was a busy one.  Ryan has been getting more homework and it can sometimes be a struggle getting him to sit long enough to do it.  It sometimes takes a lot of bribing.  And on top of the homework, when he doesn't cooperate and finish his work in school, that gets sent home as well for him to finish as homework.  One of his assignments this week was on the "fun" side.  It wasn't writing letters so Ryan was a little more cooperative.  We needed to decorate a pumpkin to put up on their classroom's pumpkin patch bulletin board.  So out came the box of craft materials and I was able to get Ryan to work on his pumpkin for about 15 minutes.  He was very independent and wanted to do all of the cutting and coloring himself.  He was patient and he did a good job.  I was impressed!  But I could also understand why he may not finish activities at school.  If he doesn't stay completely on task he won't finish because he is on the slow side cutting, writing, coloring, etc.  I'm sure with time the speed will come but for now he's trying his best to be neat and accurate, and he's come along way in the past month. 

And there were more crafts to be completed when our neighbor Carol brought the kids a bucket full of Halloween gifts.  Here Ryan is making a haunted house.  He looked at the picture on the cover of the package and carefully replicated it.  Again, he was a very independent worker and he sat for about 15 minutes to complete this task. 



My friend, Bridget (one of our avid blog readers!) alerted us about the Theatre Development Fund piloting the "Autism Theatre Initiative", the first ever autism-friendly performance in Broadway history.  That evening we heard all about it on a Nightly News segment.  My explanation would not do it justice, so I'm just going to give you the link to the segment:  Autism Theatre Initiative


Recently I received a link from my mom and friend Marni, two more of our avid blog readers, about a heartwarming story of a set of parents preparing their adult autistic son to be out in the world on his own.  Here's that link: Seeking a Place in the Adult World

Well, that is all for now.  And don't worry, when we are ready to end our journey of blog writing we will give advanced warning!

DC

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