Week 93

We had Ryan's CSE meeting on January 19th and as expected they qualified Ryan for speech services.  We are still annoyed that we wasted all of this time.  He could have been receiving speech services since September.  We are still not pleased with the progress that we are seeing with the program at Wappingers.  He made such great progress by this time last year we are now wondering if we made a mistake in not sending him to a full day program.  But we did meet with his new speech teacher and she seems really nice and we are hopeful that with the twice a six day cycle sessions we will start seeing some progress with Ryan.  We will keep you updated.
 

Getting ready to play in the snow!

Ryan loved throwing snow at Daddy and Julia!

Ryan with his cousin, Johnny.

GFCF brownies!

Making very elaborate paper airplanes with Nonna and Papa!

Happy Birthday Uncle T!  

PC

Ryan and Julia are both very excited about having a baby brother or sister.  Ryan now says he wants a baby brother and might want to name him "Batman Beyond"; too funny!  Now that the baby bump is evident we are getting tons of questions about the sex of the baby.  We are not planning to find out and want to be surprised.  So usually the next question to follow is which we would prefer.  I know it is somewhat of a cliche, but we truly just want a healthy baby.  Once you actually have your own child this statement really hits home.  I look at my children and am so grateful for who they are and what joy they have brought us.  I know we are very lucky!  As difficult as things may sometimes get, and the sacrifices we need to make, it is nothing compared to what others have to face with a truly sick child.  I would feel an enormous amount of guilt and sadness bringing a child into this world who would suffer from pain; sadly there is way too much suffering in this world already! 

DC

Week 91

Ryan had a good week and a busy weekend.  I made him flashcards of the site words he is working on in Kindergarten, and he did a great job.  There are 100 and we started with 6 of them.  Once he was able to recognize and read all of them back to me, I added another 6.  And then another 6.  So he is up to 18 words.  He struggles with a couple of them, but for the most part he has them memorized.  Julia participated in the same activities with us and learned how to read the same site words.  It was interesting to see the difference in how each of them handled the task at hand.  Ryan wanted me to read him the word, then he studied it, and somehow memorized it.  For the ones he didn't quite memorized I tried to get him to sound it out, but he had a lot of difficulty doing that.  He made numerous mistakes with the sounds that the letters made.  And most times, he just refused to sound it out, knowing he wouldn't be able to do it.  Julia didn't want me to tell her the word, or even help her sound it out.  She sounded each one out on her own, and was able to correctly read the word most times.  We already knew Ryan is a very visual learner, and now we know Julia is a very auditory learner.  We'll keep practicing the cards until we get up to knowing all 100!

Ryan did cheat a bit with his diet over the weekend as we visited family and friends, but overall he did a nice job.  Here are some pictures of our trip to Eastchester and Brooklyn on Sunday:

Hanging with his cousins!

New ornaments

Meeting my friend's baby for the first time.

With the anniversary of our first miscarriage passing this week, it was reassuring to get another ultrasound and hear that all is going exactly on track with this pregnancy.  By the way, Ryan would like us to name the baby "Batman Beyond".

DC

Week 90

We have been so busy the last few weeks.  We have had a lot going on and the blog has taken a back seat.  But we are back and have some updates for you.

Just after our last blog entry, Ryan was retested for speech. This was something that he received 3 times a week last year but our current school district cut it out of his IEP.  Now they are telling us that they noticed that Ryan had some speech delays and they wanted to get him tested.  This is something that made us both angry, because we fought to get him speech this year but they refused.  Now they are telling us, as if we did not notice, that Ryan was behind in his speech and that he needs to be tested.  He could have been receiving speech services these past five months if they listened to us back in May.  But he was tested and we have a meeting next week to set up his speech services for help with pragmatics and language.

Ryan had a lot of fun this Christmas.  This year we had Christmas Eve, Christmas Day, and the day after Christmas all at our house.  We had a lot of company visit and Ryan had a great time playing with his cousins.

His large gift from Santa was a Lego table which he sits at almost every day and plays.

While everyone was having a great time, this was the start of Phil's medical problems.  Phil had to be rushed to the ER for kidney stones on Christmas morning, right in the middle of us opening gifts.  He was in the ER for over 4 hours.

New Years Eve we spent at Dawn's parents' with Uncle T, Auntie B, Amelia, and Alyssa.  The kids had a great time staying up to watch the ball drop and ring in the new year.  It was another exciting time with the cousins and Ryan had a lot of fun learning how to play pool with Papa.

Pillow fight with Amelia

Happy New Year!

Ryan displayed good patience learning from papa how to hit the ball.

After the New Year, Phil had his kidney stone blasted.  He had so many complications with this procedure that he ended up back in the ER three more times in four days, and finally had to be admitted to the hospital for emergency surgery to remove the stones and drain the infection out of his kidney. This surgery was supposed to be a simple, in and out procedure, but since nothing with these kidney stones had been simple so far, neither was this.  Some complications arose and he spent two nights in the hospital.  He was discharged today (Sunday, January 8, 2012) and both kids were very happy to see him (and mommy too!)

The break from school during the holidays, and constant change in care givers as we spent so much time back and forth in the hospital this week, threw Ryan's schedule off tremendously.  He did not want to go back to school after a week and a half of vacation and gave us a real difficult time getting ready in the morning.  He does not want to do his class work and even forgot to bring his backpack to school one day.  He's also giving us a difficult time about writing his last name and doing homework.  He seems a bit depressed about going to school, and we'll be discussing this further during his CSE meeting at school next week.  Hopefully with everyone getting back to a regular schedule Ryan will settle back into his normal routine.

Although it doesn't seem like we've had the best of starts to the new year, we do have a lot to look forward to this year!!!

12 weeks

We hope that everyone had a wonderful Holiday Season and we wish you a very Happy New Year.

PC and DC

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