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

Week 59

Memorial Day/Phil's Birthday Celebration

The kids waving their flags from Grandma for Memorial Day

Singing Happy Birthday to Phil

Amelia, Ryan, Alyssa, and Julia

Ryan's first soccer practice

Visit to Dr. Bock.

We had an appointment this past Tuesday to get Ryan's blood work results.  We discussed Ryan's behavior since our last appointment.  He has been regressing in his behavior and Dr. Bock told us that this could be a side effect of the new supplement that he prescribed called PhosChol.  We are now taking Ryan off of this supplement, as well as a couple of others, and are trying a few new supplements with Ryan based on his updated blood work.  He is apparently low in iron and a few other areas.  They are:  Iron Liquid, Liquid D3, essentail GSH, Lith-Oro, and a different type of Probiotic.  We will now have to get into new routines to fit all of these new supplements into his diet.  But we always manage; it is just a bit overwhelming each time we go to Dr. Bock.  Ryan was a little shy with the doctor this time but we did have to wait over 45 minutes in the exam room while he was finishing his dinner.  We found this out when we complained to the nurse that we were waiting a long time and the kids were getting antsy. The doctor offered an apology once we finally saw him but he said it was based on his first patient that caused the delay, not the fact that his office smelled like fish!  Dr. Bock did suggest that we try an IV treatment but we told Ryan that this was not a needle visit and we were not going to sit and wait longer for this treatment.  We will have to do a little research on this treatment to see if it is worth the trouble of hooking Ryan up to an IV and having his arm wrapped for over an hour.  Overall we were a little disappointed with this visit because we both felt that he rushed us out of his office.  He was behind schedule and he was trying to make up time.  Hopefully our next visit at the end of August will be better but this one left a bad impression with us.    

Our new banner came in this week, just in time for the walk!

We are on our way to the walk in just a few minutes so we'll write about it on next week's blog, and for those of you on Facebook, we'll post pictures on the Ryan Express page sometime this week.  

We went to an engagement party this weekend at a family member's house.  Ryan wasn't on his best behavior and between both kids being cranky and tired, and me not feeling well, we stayed for a few hours and left.  But it was enough time for the kids to take a dip in the pool.  At first Ryan didn't want to get wet (in all fairness, the water was really cold!) but then he was fine once he finally went in.  However, he did make sure not to get water on his face, which he dislikes very much!

First swim of the season

On Tuesday Ryan graduates from PARC!  We'll tell you all about it next week!

DC

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!