Week 84

Thanksgiving!  For most people it is getting on the cozy pants and eating as much as possible.  For Ryan it is a good time but it does take planning to be sure that we have food that he can eat.  Since he has been on the diet for almost 2 years, he does not get too upset that he has to eat different things. However, we have made great strides in finding different foods that he can eat.  We found rolls, that taste like rolls, making sure that there is a separate baked potato, and cupcakes for dessert.  He did cheat a little but it was only for a spoonful of mashed potatoes.  He had a great time with his cousins and below is a picture of the kids excited to open a gift from Dawn and find their own personalized notebook.

 


Stacy's and Arnold's Wedding.

This weekend we also attended a wedding.  We were a little nervous about how Ryan was going be since he was not in the wedding and Julia was the flower girl.  However, he did great and was thrilled that he was able to ride in the limo with his sister and the bridal party from the church to the reception.  Below are a few pictures of the day.

Family picture outside the Church

Drawing at the reception  

Getting Ready for Christmas!   

Decorating the Barbie Tree

Setting up the Train!

As a side note, Ryan has been acting more and more independent over these past few months wanting to do things on his own.  So today we were upstairs and Ryan wanted to play in the living room.  The train that is in the picture above comes with all of the characters from the "Rudolph the Red Nose Reindeer" Holiday special.  When we came down later Dawn noticed that Ryan had white all over his hands.  When Dawn pressed him as to what happened and why he had white all over his hands, Ryan did not answer.  So Dawn went to the office and noticed that the whiteout bottle was opened.  Dawn kept asking Ryan what happened and finally Ryan went to one of the cabinets and took out one of the plastic train characters.  He broke the hand off and tried to fix it with what he thought was glue!  He actually did a god job but we have to teach him to do a little better job on cleaning up the evidence! We all had a good chuckle!

PC

Week 79

The long awaited wedding is here!  Ryan has officially participated in his first bridal party. He did fantastic.  Everyone commented on how well Ryan did at the wedding.  It was a very long day and all the kids did well. Ryan loved hanging with the rest of the groomsmen and they all enjoyed Ryan's enthusiasm.  He only had one meltdown when he realized that he was not going to be able to take the limo to the reception.  While he finally got over it, it was difficult for him at the time.  He really wanted to take the limo and was very disappointed that he was not able to hang out with the adults in the limo.  Other than this one instance, he listened to the photographer's directions, followed the others lead, and really seemed to enjoy the experience.  We brought some of his bread for the reception and he was so excited that he ate the whole thing in one sitting.  Below are some pictures of the weekend.

Waiting for the limo to arrive.

The Bridal Party

The Campbells at the reception.

Ryan and Amelia walking into the wedding.

Ryan and Amelia leaving the wedding.

Eating at the cocktail hour but trying to stay clean!

Having fun with Nonna!

Pictures with Great Grandma Millie

Ryan dancing the night away!!!

Celebrating Great Grandma Ann's Birthday!

Ryan meeting his new cousin, Johnny!

Welcome to the family baby Johnny!

DC and PC

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 57

Last Sunday we brought the kids to Guy and Elaine's wedding.  This was the first wedding that the kids have been to and we decided that we were not going to bring the kids to the church.  The kids spent the time at Dawn's cousin, Donna's house with her two boys.  They were at Ryan's birthday party the day before and they all had a great time.  Ryan is going to be in a wedding in October so we thought we should give this wedding a try as a practice.  We called the place ahead of time to find out the food options and there were a few things that he could eat but most of the items he could not.  We did let him cheat a little but we tried keeping an eye of what he ate and we did bring his cupcakes for dessert.  The place was very accommodating and we only had one issue.  When dinner finally came out they put a plate of fried chicken nuggets and french fries on his plate.  This was not what we had worked out with the chef and our waiter.  However, the young kid that was helping out did not realize this and just put a regular kids meal in front of Ryan.  It was already so late at night and we told Ryan that his dinner was coming.  But then we had to take it away.  He just threw himself on the floor and it took a few minutes for him to get out of it.  We had to joke with Ryan by telling him that we were going to eat his new meal and that got him up and into his seat.  

He had a great time at the wedding with all of the dancing and loud music.  They had a mini-smoke machine, laser-lights, and several flat screen televisions.  We thought that it was going to be too much for him but we were wrong.  He loved it!  He was dancing with his sister and cousins and with another little boy that has autism as well.  The kids kept dancing all night and they were usually the last ones on the dance floor each time they cleared it to serve food.  They all had a good time but it was a very late night.  We did not get home until almost midnight and Ryan fell asleep almost immediately in the car.  Below are some pictures and videos of the event.

Alyssa, Ryan, Amelia, and Julia with Nonna

Having fun at the cocktail hour.

Looking sharp with Uncle T!

Pictures of Amelia and Ryan

Trying the salad!

Dancing with Amelia

Having fun on the dance floor

Instead of a wedding favor the bride and groom make a donation to Autism Speaks.

A few videos of the kids dancing! 

We also decided that we needed to finally bring the kids to the dentist. We took them on Tuesday and they did a really good job.  We took them to my dentist and the hygienist did a great job with Ryan.  She let him look and touch everything first before she tried to clean his teeth.  He was a little hesitant at first but he watched Julia go first.  He was not too crazy about the chair going all the way back but the hygienist was able to get most of the cleaning done.  The place was not a pediatric dentist office but they really made the kids feel very comfortable.  They were calm and patient with Ryan and let him stand up so they could finish cleaning his teeth. I have heard of places asking the parents to hold their children down so they could clean their teeth but not here.  They scheduled 30 minute appointments for the both of them and we were done in about 40 minutes total.  We did not feel rushed or pressured to hold him down.  Even the dentist let the kids stand up as he examined their teeth.  They allowed the kids to select a prize out of the treasure chest and they gave the kids balloons.  A great first experience with the dentist for Ryan and Julia. 

We were not sure if the birthday party/wedding weekend took too much out of Ryan but his behavior was very off this week.  He had difficulty at school and we got several bad reports from his teachers.  Ms. Sue also had to call Dawn after Ryan was having a 30 minute meltdown.  We had stopped the red medicine injections a few weeks ago but we decided this week to start them back up again to see if it helps.

He also got another gift in the mail, this one from Aunt Anne, and here is a video of him trying it out. 

This Tuesday we have Ryan's Annual Review with Wappingers CSD and they are already starting to give us problems.  They called us this Friday afternoon and they dropped a few bomb shells on us. We were under the impression that they had a full day integrated program like he is in now at our elementary school.  However, they told us that this program is only half day and at a different elementary school in another part of the district.  We hope that this will all work out but they are trying to tell us that they will be able to service all of Ryan's needs in a 12:1:1 half day program and they will be taking away his speech services.  We don't know yet about O/T and the counseling portions; I guess we'll have to wait to hear what they say on Tuesday.  He is in a 6:1:1 full day program now receiving speech, O/T, and group counseling.  We will tell you more next week.  I can now understand why my special education parents are crazed by the time they get to the high school level.  We have only been dealing with the system for a short time and we are already crazed!   


Do not forget that The Autism Speaks walk is Sunday, June 5th in White Plains.  Click this link to join our team or make a donation.   
The Ryan Express Team Page

PC