Phil's Birthday

It is Phil's birthday and we celebrated with a dinner at Charlie Brown's Steakhouse and dessert back at home.  And the best part... I got a picture of everyone smiling, on just the second try!

Happy birthday to a wonderful father and husband.  We love you!

The Autism Speaks walk is just around the corner.  If you are planning to walk with us, or would like a shirt, please let us know.  You can sign up to join our team or make a donation here:
The Ryan Express Team

The walk is on Sunday, June 1st. We hope to see you there!

DC

Happy 8th Birthday Ryan!

Another birthday has passed and I can't believe my "baby" is 8 years old already!  Where has the time gone?

With our new shirts on May 12th, the morning of Ryan's birthday!

Mahopac Middle School

Take notice of Ryan's hand.  He was very possessive of his cake this year.  He didn't want Julia anywhere near it when it was time to blow out the candle.  By the way, the cake on our left is a GF chocolate chip cookie cake made by Carol, and the cake with the Darth Vader candle is a GF cake from The Pastry Garden.  Both were extremely tasty! 

717 pieces!

Before bed Ryan studied the box of his new Lego set.  He eagerly asked if he could head to bed to start his drawings now that he has lots of details in his mind.

This is where I found Ryan at 5:30 a.m. this morning. Determined to build his new Lego set without our help.  

He spent about 4 hours on it today (2 hours before school and 2 hours after school) and he is a little over half way done.
It is coming out great!

Some old pictures to look at.  No, this isn't Jack, it is Ryan!  He was 18 months in this picture.

And he was three and a half years old in this picture:

And how about this video of Ryan receiving one of his B12 injections.  It feels like a lifetime ago that we needed to do this.  It brought me to tears watching this video and reliving flashbacks of the months and months of struggling we went through to get Ryan to this point getting his injection. Ryan has come so far!

Since I didn't post for Mother's Day I want to share one of the gifts Ryan made me.  It is a letter that I will treasure forever!

My four beauties!  How did I get so lucky???

Last, but not least, thank you to everyone who reached out to Ryan for his birthday.  I passed along all of the messages and showed him the pictures of people wearing their Ryan Express shirt.  The Autism Speaks walk is coming up on June 1st.  We hope you can join us!  If you would like to join our team or make a donation, please follow the link below.
The Ryan Express team page

DC

Week 163- Autism Speaks Walk

Today we braved the 90 degree sweltering weather to walk for Autism.  We had some of our "regulars" with us and even some "newbies" and despite the heat it was a nice day.  Thank you to everyone who came out to support Ryan, our family, and all those with Autism!

Ryan was very excited to participate but he did something this year that he hasn't done in the past.  He walked in front of the sign the entire way and argued with anyone on our team (especially Julia) who wanted to walk next to him.  He wanted everyone to walk behind him.

I did not set up a link for our team online this year like I have done in the past.  I just never got around to it.  I took the donations I had received to the walk which totaled over $800.  Thank you to everyone who donated!  I know there are a few more people who contacted us about making a donation.  You can mail us or give us a check made out to Autism Speaks and next week we will send it all in together for our team to be combined with the donations handed in today from our team.

Here are some pictures from today's walk...

Our 2013 walk team

Ryan and Julia getting ready for the walk.

Ryan poses with the Forgione ladies.

cousins

Unfortunately we were missing a key component to our team today.  Phil could not make it to the walk. Jack has been sick all week with high temperatures.  When his fever broke he developed the Roseola rash.  The heat and sun irritate the rash, so Jack needed to stay indoors this weekend and Phil stayed with him.  Jack has had a very uncomfortable week from whatever virus was in his body and was irritable most of the time, but we did manage to get a few smiles out of him.  

Jack put on his hat to pose for the camera!

Quick update on Ryan's appointments: he met with the psychiatrist this week and there has been another adjustment with his medication.  We are taking him off of the Fluoxetine (Prozac) in the evenings, and doing a trial of a double dose of the Focalin each day.  He will take one dose before we bring him to daycare and a second dose at school around lunch time.  The nurse will have to administer it.  The hope is that the second dose will kick in when the first dose has worn out and he will have better afternoons at school and at home.  The second dose should wear off in time for him to relax and go to bed on time. We'll see how this new regimen works out this week.  

DC

Week 162- Happy Birthday Phil!

Happy Birthday to Phil!  I feel super lucky to have met such a wonderful man who supports me and the kids with everything we do.  We didn't have any spectacular plans for his special day (I'm not sure anything could have topped his surprise 40th bash last year) but we spent the weekend together upstate at my parents' house and it was somewhat relaxing.

An early birthday celebration for Phil.

Papa taught the kids how to play Poker.  They caught on quick, especially Ryan.  Julia lost interest after a little while, but Ryan became obsessed and loved the betting part the most.  There were times where he became agitated when he lost a hand, but for the most part, he had a lot of fun playing during the rainy weekend.

Out to dinner for daddy's birthday!

Ryan had a lot of ups and downs with his behavior this week.  He continues to have difficulty with his sudden change of emotions and outbursts, but during the hours he is on the Focalin there is certainly an improvement.  There is still a lot of tattling going on at school, and during the week his special education teacher wrote us an update that he cried during P.E. class after each relay race that he lost.  We meet again at the end of the week with the psychiatrist to discuss the medication, and Ryan also goes for his annual check up this week with the pediatrician.

This is the busy time of the year with school and Phil is out several nights this month and next for events at work.  I was fortunate enough to have some help last week from a friend who came to spend time with the kids and help me with the afternoon and evening routine.  All three kids enjoyed her company and Ryan was on his best behavior, except for some resistance with reading a book for his homework.  After she left I was thinking how helpful her presence was and it reminded me that we are still waiting to hear back from OPWDD to see if Ryan is eligible for respite services.

This Sunday, June 2nd, is the Autism Speaks Walk in White Plains.  We are walking as The Ryan Express team.  Registration begins at 9 am, Opening Ceremonies is at 10, and the walk begins at 11.  Please let us know if you are able to meet up and join us!

DC

Week 60

It was a busy week with the Autism Walk, soccer practice, and PARC graduation.  He did amazing through all of these things and we sometimes have to remind ourselves how far he has come in such a short time.  Looking back over the blog we sometimes forget how far he has come.  Considering all of the things that we have done over the past year, without this diet and treatment, this year would have been much different.  When we went to Ryan's CSE meeting Dawn commented that without the diet we rarely left the house because Ryan was too difficult to manage.

This past Sunday we had 27 people walk for The Ryan Express at the Walk Now for Autism Speaks at New York Presbyterian Hospital in White Plains, NY.  This was almost half the people that we had last year but we still raised over $2000 for the cause.  It was a difficult weekend for people to make it but we want to say a huge thank you to those that took the time and supported Ryan and us for this cause.  It was a nice day and the walk was very well organized.  Ryan had a great time playing with his cousins, Nick and Christopher and this time he walked the entire 2 mile course.  His stamina has improved over last year and Julia almost walked the entire distance.  However, she did manage to hitch a ride on the the back of one of Dawn's former students.  Thank you again for those that came out to walk and for those that supported us in this cause.

We attended his second soccer practice and he did great.  Believe it or not he was able to keep up with the all of the stretching exercises.  He was the only one that was able to keep his legs straight, hold the ball between his feet and roll backwards onto his back.  He was so proud to be the one that the other coaches were telling others to look at and see how Ryan was doing the exercise.  He was then placed in the upper level group and "played" his first soccer game.  It was just a group of special needs students with high school students kicking the ball around.  Ryan had a little difficultly understanding the game.  He latched onto the concept that if he kicked the ball out of bounds, he could then  kick the ball back into play.  He had a grand time and was so excited to get his soccer jersey.  He went right into the box of jerseys and picked out a neon green and white jersey with the number 12 on it.  He went right up to the two coaches and told them that the number 12 was his birthday.  He demanded that I put it on him and he wore it home.  It looks like he is excited about soccer and he really played well with the other children in the group.  Hopefully he will have a good time in the fall and spring under-6 league.

On Tuesday we attended his PARC graduation.  He was so excited to tell Nonna, Papa, and Grandma that he was graduating and going to kindergarten.  It was a very nice ceremony and he had a great time. They had each of the preschoolers come out one at a time dancing.

They were all so excited to come out and dance for everyone.  Ryan was thrilled to come out and he danced the entire time. 

 America the Beautiful...

They then sang the alphabet while signing the letters.

Ryan was not interested in singing all of the songs because there were so many dragon flies around he often got distracted watching them fly around. Here's a couple of pictures from the skit they performed.

 

When they had the students come out in their graduation robes we knew something was up.  He just walked out and lined up without any smiles.  We found out later on that they had used hair pins to keep the graduation hat on his head.  Since he  just got a hair cut the pins scraped his scalp and he did not like how they felt on his head.   This is something that we will have to remember for his next "graduation" ceremony.

Ryan's class in their caps and gowns.

Towards the end of the ceremony, he had such a look on his face and he just stood there while the rest of the class was performing the last song.  He participated a little bit, but he was not focused on what he was supposed to be doing.



























 














The video clip was too long to post on here so we had to upload it to You Tube.
Click here to watch Ryan perform part of the last song.



Diploma time...

He was really happy running around with all of his friends afterwards and was happy to take the hat and robe off and get his snack.We bribed him with a cupcake to take a few pictures before disrobing.
 

Kindergarten, here we come!

Ryan with nonna and papa

Ryan with grandma

family shot

sibling love

Ryan with Ms. Clair, Ms. Angela, and Ms. Rose

Ryan with Ms. Sue, his Special Education teacher

Ryan with his teachers again, this time Ms. Raina also joined in

It was another busy week and Ryan had a great time.  We are glad that we remember all of the good things each week and not just the meltdowns and struggles.  Hopefully these good times will continue.

PC

DC- pictures and videos