Week 157

We had yet another extremely busy weekend.  I took the kids to see The Little Mermaid performance at my school.  They both loved it and were excited to take pictures with some of the cast members.

Also, Ryan had a soccer game and Julia had her Irish Dance Recital.  She won a certificate for her performance in class all year and she was thrilled!  And Ryan was so proud of her.  After she performed on stage he tapped the shoulder of the woman sitting in front of him and said, "That was my sister!"

Ryan continues to struggle at soccer.  This may be the last season for him until he expresses some interest in playing.  We haven't found a sport yet that Ryan enjoys enough to stay focused and actually gain skill from practicing.  But then this weekend Phil put out the basketball hoop that Uncle T bought the kids for Christmas and Ryan has been asking to practice everyday so far.  He even came off the bus today and immediately picked up the ball and started shooting.  |Now we just have to pick up a second basketball so that they can each hold their own and practice dribbling and shooting.  The sharing of the basketball has not gone well so far.

I forgot to mention in last week's blog that I was finally able to get all of the paperwork together needed to see if Ryan is eligible for services through OPWDD (Office for People with Developmental Disabilities).  We mailed it to our local office and the intake coordinator told me it can take up to two months for our paperwork to be processed and for us to hear back if Ryan is eligible.  It may take just as long to establish services if he is deemed eligible.  Our primary request is for something called respite services.  It is like "babysitting" and we are hoping we can schedule this during times when Ryan can work on his homework with the service provider.  We are hoping he will respond more positively to someone else than he does to us.  Unfortunately, even if approved, I can't see this starting before the end of this school year but we will be more than happy if something is put in place for the start of his second grade year in September.

Report cards were sent home this week and Ryan received a very typical report.  There was improvement in several academic skills and still room for improvement in some of the behavioral areas.  His reading level, which was reported as below level first quarter, then on level second quarter, was back to below level for third quarter.  Ryan continues to have difficulty not calling out in some of his special classes where the structure is different than his co-taught classroom.  We will be attending his annual review at the end of this week and I'm sure we will get more information across the board on how he is doing in regards to the testing that was completed.

We are into two weeks on the medicine (Fluoxetine which is also known as Prozac).  Dr. Hahn said it may take three weeks for us to notice any positive changes.  Ryan continues to have ups and downs, especially in the areas that the medicine was supposed to help with - his impulsivity and anxiety.  I hate to say that I feel his behavior has been worse on some days since beginning the meds.  But we will wait it out until our appointment in two weeks and then make a decision if it is working. It is a very low dose (5 mL).  Maybe this is not enough of a daily dose to make a change. I don't know any other 6 year olds on this medication to compare their weight and what dose they are on.  I guess this is something we will need to discuss with the doctor.  On a positive note, Ryan takes the medicine with no problem.  He does the syringe in his mouth all by himself at dinner time.   It has a strong peppermint taste so he immediately follows it with a drink or bite of food.  He complained the first couple of times but now there aren't any issues.

I sometimes feel like we don't say "Thank you" enough.  Just about everyday I have someone reach out to me to check in on how Ryan and the entire family is doing.  It is so greatly appreciated.  The support reminds us that we are not alone and that there are so many people that care enough about our family to continue to stay updated through this blog.  Many thanks!!!

DC

Week 135- Our Little Volunteer

This was another busy week for Ryan.  On Thursday we had his teacher conference to go over his first report card.  His teachers had really great things to say about him and his love of learning.  They said that he is always excited to learn and always ready to speak in class.  What they did not mention was the comment that they placed on his report card...he has difficulty handling conflict.  This is something that we worry about him at home.  He has a difficult time understanding that not everyone is going to listen to him and follow his instructions.  This was demonstrated this week with yet another bus incident.  Another boy was talking about guns on the bus.  Ryan told him to stop talking about it and the other boy refused.  They got into an argument and Ryan slapped the other boy across the face.  The bus driver did not see the incident but another boy and Julia saw what happened and they told us.  We made him apologize the next day and we never heard anything about the incident again.  But this is something that we have to be mindful as he gets older.  The only other area of concern that they pointed out was his reading. His reading level is below grade level.  However, they showed us that it is just below where he needs to be so we are not worried.  He went from a non-reader last year to someone that loves to read.  At the end of the conference they gave us his first unit test in Social Studies and he got a 100%.  Overall we are pleased and he has made great progress with the full day of first grade.  His teachers are great and really seem to understand Ryan.

On Friday I was able to witness how far Ryan has come in his gymnastics.  The owner of the gym was working with a small group from his class on the high balance beam.  Ryan was able to climb up, balance himself on the bar and attempt to catch a ball and throw it back to owner.  It took him a few tries to keep his balance but he did not give up.  After three tries, he was able to complete the task several times until the owner told him to get down and let someone else give it a try.  The old Ryan would have had a difficult time getting up on the beam, balancing, and would have given up after the first fall.  He did a great job and really seems to enjoy the experience.

This past Saturday was a very busy day.  After his religion class he had his last soccer game of the fall.  While he did not score any goals this season he did a nice job playing the game.  He is still a little afraid of the ball when it is kicked hard at him but he is getting better.  I am not sure if he is going to stick with the sport.  The level of competition is getting more competitive and they are just passing him by on the field.  He loves being part of the team and he has a lot of fun with the other kids on the team.  We will have to wait and see what happens during the spring season.

We also kept busy this week with the collecting and sorting of the back packs. Below are some pictures of the event. Dawn and her friend Donna, with the help and support of family, friends, and Mahopac students, collected 140 backpacks for the victims of Hurricane Sandy.  Ryan had a lot of fun helping with the week's events.  They even started to call the front room the "donation room".   And when Ryan saw Dawn and Donna counting money donations to purchase supplies he took out his wallet and handed them $7 and some coins.  Such a generous, caring boy!

Helping to sort the back packs

The finished product

The cousins enjoying time together on one of the half days of school this week!  

Helping unload the back packs at the Belle Harbor Yacht Club

Having fun with his cousin Frankie

It was a good week and we count our blessings with Ryan.  He was so excited to help with the donations and was a big hit with some of the ladies at the Belle Harbor Yacht Club.  He has come such a long way and we are all extremely proud of his progress.

PC

Week 105

April 17th marked an important anniversary for us.  Yes it was my brother's and sister-in-law's anniversary, but they are sharing their day with another event as well.  It is the 2 year anniversary of Ryan starting the GFCF diet.  We feel this is a huge milestone.  When we began we had short-term goals in mind.  Never did we think we'd last a year, let alone 2 years!  Each time we try to deviate from the diet the results bring us right back on track.  There are times when Ryan has to "cheat", sometimes several times a week, and we pay for it afterwards.  It seems his skin is paying for it as well lately as the smooth, soft skin he had a few months ago has been replaced with patches of rough, itchy, blotches.  I have to admit, we've gotten a bit lazy.  We no longer bring his food with us when we go to parties, or at least to the extent that we used to.  We let him have what is there.  He's even more inclined to cheat lately.  He recognizes the difference in taste and sacrifices the way he is going to feel the next day, to enjoy living in the moment.  He also knows exactly what to say to avoid an argument with us... smart little munchkin! Ryan: "It's not gluten-free, so I'm just going to have one, okay?"

Our goddaughter Amelia made her First Holy Communion this weekend.  Here are some pictures of the special day:

On the 17th this week I had a follow up appointment with the specialist to look at the baby's heart and bowels.  The baby is growing beautifully and perfectly on track.  He/she is at 2 pounds 1 ounce.  The bowels and entire digestive system seems to be working normally.  I was there for over an hour and the entire consumption/elimination process was witnessed.  But there are still some spots on the small intestine that will keep me going back to see this specialist, at least for one more follow up before the baby is born.  It may be signs of an infection, but the bowels are so small it is difficult to tell.  So she wants to keep monitoring that section and the baby's growth, and it is suggested the baby gets an x-ray after birth.  If there is a problem with that section, there is plenty of small bowels compared to large bowels, so it is the easier of the two to perform surgery on.

Pictures from Ryan's soccer game this week: 

There is a noticeable improvement from the fall season to the spring season, and Ryan seems to be enjoying himself more.  Although he's had 2 games and hasn't scored a goal, he remains positive.  He's scored goals in his scrimmage matches and he just seems to be happy to be doing something different.

We received Ryan's Quarter 3 report card this week.  He received 2's (Developing Skills to Meet the Standards) and 3's (Meets the Standards) in most areas.  Under the responsibilities, he scored "Needs Improvement" in two areas:  Engages in activities, and Demonstrates self-control.  Here are the comments from his Kindergarten teacher and his P.E. teacher: 

Perfect attendance so far...impressive!!!

His list of speech and language goals also arrived and 8 of the 10 are "progressing gradually", meaning he may or may not meet this goal by the target date, and the other 2 are "progressing satisfactorily" meaning he is on track to meet the goal by the target date.  I think we would have seen much different progress had Ryan continued speech services from last school year into this school year.  His S&L remained stagnant and did not improve enough on its own compared to his increase in age.  His annual review is coming up in May so at least we have proof that he needs the help and needs to continue to receive services in first grade.  We did get a call from the school and they are going to recommend the inclusion program for 1st grade.  This is what we expected him to receive this year, but they did not have this program at the kindergarten level at our particular elementary school and we opted to have a shared aide for Ryan rather than bus him to a different elementary school.   His teacher feels he needs more support than he is receiving from the aide in the regular classroom.  With the inclusion program, he will be in an integrated setting (both regular and special education students) and receive the support from a special education teacher and teacher assistant, as well as the regular ed teacher in the room. 

In the mail this week we received a framed puzzle of a picture from last year's walk.  Ryan, and Julia, immediately noticed that one of the pieces was missing.  We tried explaining to them the symbolism and meaning behind the missing piece.  The company taped the missing piece behind the frame.  Phil seems to think it is there in case you couldn't "handle" not having a piece missing you could fill it in.  I like to think it is taped there in hopes that we can complete the puzzle one day when the mystery of Autism is solved and a cure is discovered. 

Ryan knew that this said "The Ryan Express" and "2011".  When I pointed to the $ amount, he said, "That means a lot of money!"

Our team has been established on the official walk site.  If you would like to walk with us on June 3rd, please click the link below to join our team:
The Ryan Express Team Page

DC

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