Week 58

Happy Memorial Day and Happy Birthday to Phil!

After a long day of playing outside in the warm weather, there aren't too many things that are better than eating watermelon!

Phil's birthday was on Friday and Ryan is excited that we will be celebrating it on Memorial Day with our families.  He's been talking about it all weekend and was happy to go buy a cake for daddy.  Our family chipped in to buy Phil a new barbecue grill for his birthday and Ryan was happy to help daddy put it together.  We used it this weekend to grill turkey burgers and we'll be grilling corn on the cob, chicken, steak, hot dogs, and zucchini on it for Phil's birthday celebration.

To follow up with last week's blog, we attended Ryan's CSE meeting on Tuesday.  First thing on Monday morning the school psychologist called me to smooth things over and try to reverse the damage that the speech therapist did on Friday.  So after a long phone conversation with the psychologist we felt much better going in to Tuesday morning's meeting.  Ryan will not be going to Fishkill Plains, but to Gayhead, as we had planned all along.  They do not have an Integrated Kindergarten class at Gayhead, so he will be in the regular education classroom, but he and another little boy will be sharing a Teaching Assistant.  This is a much better situation than him having the benefit of a Special Education teacher, but needing to share the teacher with up to 11 other special needs students.  With that kind of ratio, we felt Ryan would get lost in the crowd.  And it would be very difficult to anticipate situations that set Ryan off while trying to manage all of those children.  He is in a full day program now but Wappingers does not have full day kindergarten, only half day.  We're currently working on arrangements for the other half of Ryan's day. 

His speech services will end at the end of the school year, but there will be screenings done in the fall again.  He will continue with O/T but rather than twice a week like he gets now, it has been reduced to once every 6-day cycle.  His counseling will continue.  He is in a 5-1 group counseling now and he will get a 3-1 counseling session each 6-day cycle.  While we realize that the frequency of his services have decreased, that ultimately is the goal.  And if things are not going smoothly in the fall, then we can request another meeting to address issues, and we are dealing with the Committee on Special Education, not the Preschool Committee on Special Education anymore, which is chaired by a woman who is cut and dry and in our experience does not seem like she is there for the good of the child. 


On Memorial Day Ryan will attend his first soccer practice.  We signed him up for U6 soccer in the fall and they asked us if we would like him to join a team this spring that works with special needs children.  We thought it would be a great way to get Ryan to understand the rules of the game and play with other children before he plays on a team in the fall.  We bought him a soccer ball and shin guards and he practiced dribbling the ball around the outside of the house this weekend.  He did a few laps before becoming bored with it.  And he wasn't crazy about wearing the shin guards but I think he'll be more apt to participate in all aspects of the sport when there are other boys there doing the same thing.

Also coming up this week, Ryan has an appointment with Dr. Bock on Tuesday, and the walk is on Sunday.  It's still not too late to sign up to join our team!  The walk begins at 11 am and we're gathering at 10 am.  If you need details, please let us know, or visit our team page.  The Ryan Express

And I can't write this blog today without mentioning my cousin Cara Ann, who would have been celebrating her 25th birthday today.  She passed away 4 months before her 16th birthday, an amazing feat since her family was told she wouldn't see her 1st birthday.  She survived all of those years with a rare genetic disorder called Trisomy 13.  Her family, especially her mom (my godmother Aunt Lucy) gave her great care, showered her with love, and never gave up on her.

 

Love you, Cara Ann!

DC

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

Ryan's Birthday Party - 5/14/11

Ryan enjoyed his birthday party and remained excited throughout the day!  And he did a great job with everyone around.  He played nicely with his friends, hugged all of the guests and said thank you.  Ryan liked his GFCF cupcakes so much that he ate one chocolate one and one vanilla one.  Here are some pictures from the party...

Ryan has been asking for the Sodor Suspension Bridge, and Uncle T delivered!

Happy Birthday Ryan!

DC

It's Tee-Shirt Time!!!

Ryan proud to wear his special shirt and birthday hat that Ms. Jessie made him.

Ryan arrived at Noah's Ark to find balloons and a Happy Birthday sign on the door.

Ryan and Julia with Ms. Jessie

Team 7A supporting The Ryan Express

Some of the staff members at at my school that wore their Ryan Express shirt!  Over $1100 in donations to Autism Speaks were made this week by both staff and students.  Way to go Mahopac Middle School!

Ryan and Ms. Jessie

Teachers and kids at Noah's Ark supporting the cause!

Happy 5th Birthday Ryan!

Happy 5th Birthday Ryan!

We love you very much and are proud to be your parents!  The past five years have been very memorable and we wish you happiness always!

2006

2007

2008

2009

2010

2011

 DC and PC

A Message from Ryan's Grandmothers!

Continuing with our special week of blog posts, here's a favorite story from Ryan's grandmother and a letter from Ryan's nonna and papa.  We love the feedback we've been getting about the posts this week.  Keep those emails and Facebook posts coming!  We're glad you're enjoying these special editions!  And for all of you that cried reading the last couple of posts, don't put those tissues away just yet!

DC

Ryan is a sweet, caring, and sensitive boy.  He always enjoyed me visiting him but never wanted me to leave. I would take my coat out of the closet and he would take it from me and put it on the floor.  Then he would fall on it and didn't want to get up.  When he got older he would say "STAY, grandma stay." It always made me glad to come and visit, however sometimes I would have to sneak out when he wasn't looking.

Love you Ryan, 

Grandma

 

 

 

Wow! Ryan- You're 5 years old.  Time sure does fly.  And how quickly a little over a year passed since you were diagnosed on the Autism Spectrum.  What a difference we notice since then.  At first you appeared to have a distant personality.  But since Dr. Bock, a new diet, many supplements and special education, we now see energy, motivation and brightness that comprise a very lovable, spirited and animated "you".  You're too young to realize now but when older you'll know this became possible by the unconditional love your parents have for you.  They continue to be unrelenting in all aspects of your care.  The strength of their love and perseverance will give you a great life and wonderful education.  As you told us not too long ago... "Nonna, papa, - Someday I am going to college."  Well, Ryan, you are absolutely correct and we proudly look forward to that day as much as you do.  In all your ventures we wish you the best.  You are an amazing and very special little boy to us.  May God Bless you on your 5th birthday and always.  

 

We love you,

Nonna and Papa 

 

Julia and Ryan

The story of a brother named Ryan and a sister named Julia....

At first, Ryan wasn't sure what to make of Julia.

But then he realized that she was an eager playmate.

She didn't get upset when he threw sand at her.  She was happy just to be invited into the sandbox.

 

And he could even ride her like a horse.

He now had a partner to dress up with on Halloween.

 

  

 

And someone to take school pictures with.

Someone to go on vacation and spend holidays with.

 

 

 

Someone to act silly with.

 

And over the years there would be lots of hugs and kisses!

 

 

 

 

Someone to start the day with and end the day with.  Someone who would always be by his side.

 

Despite the competitiveness they share, it is clear that Julia looks up to Ryan and it makes him a proud big brother!

I asked Julia if she wanted to say something about Ryan, and here's what she said...                      

                

DC