Week 87- Post #150!

It has been such a crazy time for us these past few weeks that we did not get a chance to post last week.  Julia performed in her dance studio's Nutcracker and that has been the focus for the past few weeks.  We took Ryan to see the ballet today and he did really well.  It was over 2 hours and while he did get a little fussy towards the end he sat through the entire performance.  He was also excited to see his teacher from last year, Ms. Sue.  He had such a huge smile on his face as he ran over to her and gave her a big hug.  At the end of the performance, they had Santa Claus on stage and they invited the children in the audience to come on up.  Ryan told him that he was a good boy and that the he wanted a LEGO Pirate Ship.

We hope that everyone has a wonderful Holiday Season and we will see you in the New Year!

Ryan's Kindergarten Picture

Ryan with Ms. Sue

With Santa after the Nutcracker.

Julia after her performance as an Angel.  

PC

Week 85

Report Card Time.  This past Tuesday, we had our first Parent-Teacher conference to go over Ryan's first report card.  They scored a variety of items on a scale of 1(the lowest) to 4 (the highest).  While he did not have any 4's he did not receive any 1's.  His teacher commented that he volunteers often, is making steady progress academically, but he requires significant teacher support and assistance.  We are hoping that she put that in his report card so that she can keep the aide that is in his room and that we can show that he continues to need an aide through this year and next.  Over all it was a good report card but he has a long way to go to becoming an independent student.  But it was a good start and we have to remember that a few short years ago he could not handle circle time and now he is handling half day mainstreamed Kindergarten.  He has come a very long way in a short period of time.

However, at the end of the meeting his OT teacher gave us a consent form to sign because they want to evaluate Ryan for speech.  This made us a little crazy because if you remember he was receiving speech 3 times a week last year and at his CSE meeting they denied him speech services.  Now they want to evaluate him for language development and pragmatic language.  These were the things that we had been dealing with for the past three years and that our school district denied to us.  Now they want to do further testing on Ryan for these exact things.  It is frustrating that he could have been having these services for the past 12 weeks!

The next evening, his elementary school had a Literacy Night.  This was where they explained the K - 2 reading program.  Two teachers gave an overview of the reading program and had a very interesting power point.  What was very interesting was that they had about 20 high school students, from the Math Honor Society, stationed in the cafeteria.  They were there to watch the elementary students and Ryan had a blast playing checkers with two of the high school students.  They even told me that he won one game and almost won the second game.  His friends were giving him a hard time that he was in the math honor society and a kindergartner was beating him in checkers!  At the end of the evening program they marched all the children in and read them story, demonstrating the different techniques that were describing to us.  Ryan really enjoyed the interactive aspects of the reading program and really got into making the animal sounds when they were needed for the story.  He had a great time.

Ryan's December school project.

Today we had a great time as a family trimming the Christmas tree.  Both Ryan and Julia had a lot of fun putting the ornaments on the tree.  He did such a great job this year and he kept his focus for the entire time we were hanging them on the tree.  He hung a lot of them himself and when he could not reach, he told us where he wanted us to hang them.

Ryan helping daddy, papa, and Uncle T put the lights on the tree.

Hanging one of his ornaments.

The finished product!

Today was also the Ciaramella Family Christmas reunion.  We had a great time and Ryan had a lot of fun.  This year, one of Dawn's uncles was the DJ.  hHe step up a freeze dance competition and a huge game of Musical Chairs. In both games Ryan was very excited to play and had a great time.  While he lost both games, he was age appropriate upset.  He did not throw himself on the floor, cry, or lose his mind.  He just walked off the floor and sat down.  He was upset but he was upset that he did not win just like the rest of the kids that lost the game.

Eating at the kids' table.

Working on some holiday crafts!

On the conga line.

A visit from Santa!

In the craziness of the Holiday season, Ryan has been doing extremely well and is really looking forward to Christmas.

PC

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 83

Last Sunday Ryan had a play date with his friend James.  This was the first time that we left Ryan at another person's house that was not family.  These are good people and Ryan really gets along with their youngest son, James.  He stayed for a little over an hour at their house by himself and did fantastic.  When I picked him up, Ryan and James hid so their play date would not end.  I let him play for a few more minutes and when it was time to go, he put his toy away and thanked James' parents.  He gave each of James' sisters a hug and then he gave James one.  He did such a good job that they invited him to come over any time.  James's mom remarked that if we did not tell them that Ryan was diagnosed with Autism they would have never guessed.

This past Saturday, we had our last soccer game for the fall season.  Ryan scored another goal and the rest of the team did great.  We were so happy that Ryan kept with the soccer.  At one point during the season he announced that he was going to quit soccer and it took Dawn quite a bit of convincing to keep him in soccer.  He really bonded with Coach Mark, the other coach, and he will only play with him.  We were really glad that he kept with it and hopefully the spring season will be a good experience as well.

Here are a few pictures from the week.

Ryan and mommy

Ryan and Julia with their Thanksgiving gifts from Carol.

New scarves from nonna

Here are a few links that we found over the week and thought you would like to see.

Autism, Siblings, and the Art of Unconditional Love: An Interview with Lindsey Nebeker


Storybook for siblings to help explain Autism to them: http://www.timesunion.com/local/article/Story-helps-kids-understand-autism-2257300.php#photo-1736294

PC

Week 82

Happy Veteran's Day!

Ryan had to do a project for Veteran's Day called "Hands for Heroes". He had to trace his hand and we wrote the names of family members serving in the military. The red represents those currently on activity duty (cousins) and yellow for those deceased (my uncle, who I was named after but never met). -PC

Remember Ty, the little boy with cancer who needed a miracle?  Well this week his MRI came back clean, so he may just get the miracle he needs! Back during Week 44 we dedicated our blog post to Ty:  http://theryanexpress512.blogspot.com/2011/02/week-44.html  Check out this news story about Ty's dad running a marathon:  http://www.nbcnewyork.com/video/#%21/news/local/One-Fathers-Special-Reason-to-Run/132827623

Thanks to Uncle T for our visit to Radio City to see the Christmas Spectacular!

Upon the suggestion from a coworker I made the family King Arthur brand GF brownies.  They were excellent; very moist and chocolatey.  The kids loved them, as well as our dinner guests.  I added some GFCF chocolate chunks before baking them, and they were yummy!  I had never seen the mega chunks before but we use Enjoy Life mini chocolate chips all of the time.  You cannot tell the difference between Enjoy Life chocolate morsels and your typical Nestle morsels.  Well, there is one difference... the price.  Usually the 10oz bag is close to $5.  We saw them this weekend at Nature's Pantry for $3.15.  We grabbed several to stock up!  I also picked up a King Arthur chocolate chip cookie mix and when we try those we'll be sure to let you know how they were. 

Ryan (and Julia) loved these brownies, mixed with Enjoy Life chocolate.  Mom, you are always looking for stocking stuffer ideas for the kids.  Hint, hint!

Ryan scored his second goal in soccer this weekend.  Unfortunately I don't have any pictures or video to share because his game was the same time as Julia's rehearsal for the Nutcracker and I haven't figured out how to clone myself just yet.  But I do have a picture of Ryan just before he left for his game.

And I have a video of Ryan kicking the ball around with his dad/assistant coach!

Practicing soccer with daddy

And as if we didn't have enough going on this week, we dressed the kids up in their Sunday best and took pictures for this year's Christmas card.  I will share one of the photos, but that is it.  You'll have to wait for the card to see the entire ensemble.

Okay, I know I said I would only post one picture, but I have to put up this one too.  It was the first one I took, and Ryan was so annoyed that he had to get dressed up and go outside to take pictures.  Good thing we finally got him to laugh, or we would have had to pick a new day to reshoot!

I'll end with the "Awww" moment of the week:

After saying that he loves "mommy, daddy, Julia, and Helen (our cat)", I ask Ryan, "Who else do you have room in your heart to love?" And he replies, "I don't know who else. Maybe if we have another baby and they grow up then I can love them too."

DC

Week 81

Happy Halloween and Happy Snow Days!

We were able to take the kids out trick or treating to a few houses while it was still light out and before the real cool chill set in.  Ryan ate a couple of pieces of candy that evening but happily packed the rest into a brown paper bag to bring into school to donate.  His school was collecting kids' Halloween candy as part of a healthy initiative and the candy was sent overseas to our troops.  By the way, it had to be in a brown paper bag because that is what Mrs. Allen held up to show the kids as an example.  I know this because we happened to be in the classroom the day after Halloween. 

With all of the snow and power outages in the area our schools were closed on Monday, 10/31.  Ryan went back to school on Tuesday, but Phil and I had another snow day.  We were grateful to have the opportunity to volunteer in Ryan's classroom for their postponed Halloween party.  Ryan was so excited to see us there.  The kids made some crafts and enjoyed the food sent.  Ryan of course wasn't able to eat the cupcakes so I sent in one of his special cupcakes.  He ate this first, and also ate some of the fruit and vegetables the other kids were eating at the party.  Then a mom walked in the room with cupcakes for the kids and Ryan was already finished with his.  But his teacher distracted him by giving him a special job to do.  He had to help count the candy corn in the jar that the kids had took guesses on.  Then he got to deliver the prize to the winner.  Phil and I were so happy to be able to volunteer since we will be working during the other parties this year.  Here are some pictures of Ryan doing his crafts.

And speaking of crafts, Ryan also worked on his November Family Project at home that evening.  We had to decorate a turkey in a disguise.

The next day Phil had to go back to school, but I was on my 3rd snow day.  Since Ryan was Star of the Week in his class, I went in to be a guest reader and read a book that I read to Ryan at home.  He was excited and surprised to see me in his classroom a second day in a row.  Julia was excited also, as I picked her up from preschool and brought her with me so that she could see Ryan's classroom.  That evening and the next morning we had to prepare Ryan to not expect any of us in his classroom on Thursday!

Ryan had another soccer game this weekend and was super excited to see Uncle T arrive with Amelia and Alyssa.  No goals were scored by Ryan but he had fun.  Later on in the afternoon the kids had fun at the playground.

You may recall from a blog post in September that when Ryan met with Dr. Cowan he was diagnosed with Systematic Pragmatic Language Disorder.  This was certainly not a surprise to us, or probably anyone who has a conversation with Ryan.  All of his speech and language tests score low in this area, and each of his teachers' reports over the years mention that Ryan has difficulty with the pragmatics of language.  We don't believe the school supports this area of weakness but now that they have had a chance to pull out all of the kids for routine speech screaning we will be in touch with them to see what, if anything, can be done to help Ryan.  We are not expecting much, and we may even need to request a meeting to update his IEP with this new diagnosis.  Our next step will be to contact our insurance company to see how many sessions, if any, are covered if we hire a private speech therapist.  Friends of mine who have done this for their own children have had 30 sessions per year covered.  Then we'll have the difficult task of finding a good speech therapist that would be willing to meet with Ryan at his after school program or at our house to provide him with sessions.  If anyone has any insight into this, please share!

Below I've provided some information gathered from the SLHA (Speech-Language-Hearing Association) website if anyone would like more details about Ryan's difficulties with the pragmatics of speech. 

An individual may say words clearly and use long, complex sentences with correct grammar, but still have a communication problem - if he or she has not mastered the rules for social language known as pragmatics . Adults may also have difficulty with pragmatics, for example, as a result of a brain injury or stroke.



Pragmatics involve three major communication skills:

1. Using language for different purposes, such as

-greeting (e.g., hello, goodbye)


-informing (e.g., I'm going to get a cookie)


-demanding (e.g., Give me a cookie)


-promising (e.g., I'm going to get you a cookie)


-requesting (e.g., I would like a cookie, please)


2. Changing language according to the needs of a listener or situation, such as


-talking differently to a baby than to an adult


-giving background information to an unfamiliar listener


-speaking differently in a classroom than on a playground


3. Following rules for conversations and storytelling, such as


-taking turns in conversation


-introducing topics of conversation


-staying on topic


-rephrasing when misunderstood


-how to use verbal and nonverbal signals


-how close to stand to someone when speaking


-how to use facial expressions and eye contact

These rules may vary across cultures and within cultures. It is important to understand the rules of your communication partner.


An individual with pragmatic problems may:

-say inappropriate or unrelated things during conversations


-tell stories in a disorganized way


-have little variety in language use

It is not unusual for children to have pragmatic problems in only a few situations. However, if problems in social language use occur often and seem inappropriate considering the child's age, a pragmatic disorder may exist. Pragmatic disorders often coexist with other language problems such as vocabulary development or grammar. Pragmatic problems can lower social acceptance. Peers may avoid having conversations with an individual with a pragmatic disorder.
 
I will end with a link to a video called The Greater Good.  It is a documentary that weaves together the stories of three families whose lives have been forever changed by vaccination.  It is over an hour long but so worth watching, especially if you have young children or are planning to have children.  Thanks, Jimmy, for sharing it with us!
 
DC

Week 80

Goal!!!  Ryan scores his first goal in soccer.  He was so excited that after scoring he ran to the middle of the field and jumped into his coach's arms.

The goal happened just before halftime and although I didn't get him scoring on video, I did get this at halftime...

 

Due to the storm this past weekend Ryan had quite the treat having a sleepover at his cousin Amelia's house, spending one night sleeping in our room, and having his first snow day of the season off from school.  We were out of power and once we got our power back we still didn't have heat, but now everything is back and hopefully we'll get back on track and schedule.  

The kids spending time with nonna for her birthday.

DC

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