Week 62....Flowers and a Mother's Love

Ryan

Ryan's sunflower plant starting to bloom.

This is a picture of the sunflower that Ryan planted as a seed at PARC over a month ago.  We planted it outside of our kitchen window and we watch it grow.  It was this lanky, flimsy stem when he brought it home and now it is rooted firmly into the ground, standing strong.  We're looking forward to the day it fully flowers.


Here's a picture of Ryan and nonna playing a mini Foosball game.  His fine motor skills have certainly improved, as well as being able to accept losses while playing games. 

Ryan finished his school year at PARC on Friday and we couldn't be happier with the changes he's made this year.  The increase in muscle tone, the improvement in his speech, academic advancements, the frequency of social interactions, and the increase in his confidence are just some of these changes.  He's ready for kindergarten!  I'm so proud of his accomplishments and I love Ryan so much.  There's nothing I wouldn't do for him!

Julia

Julia with her flowers and trophy after her first dance recital.

Seeing her so happy and proud of herself, makes me proud.  I love Julia so much and there's nothing I wouldn't do for her.  Here is a link to the video of her performance of  On the Good Ship Lollipop

The entire show, including intermission, was three hours.  We brought the Ipad and ear plugs for Ryan and when he got bored with the show he went back and forth to the Ipad.  He wasn't bothering anyone, and it was sitting on his lap with the cover over it so that it wouldn't be a distraction to anyone around us.  A nasty old man behind us said something about him "watching TV" and I turned around and gave him a piece of my mind. Again, there's nothing I wouldn't do for my children.  It's unfortunate when you have to encounter selfish people who have clearly forgotten what it is like to have young children, and probably have no idea what it is like to raise a child with special needs.  Under the circumstances, Ryan did a great job sitting still in his seat for the entire show.  And when one class performed to the song, "Who Let the Dogs Out?", Ryan even sang along!

Baby

This is a picture of the violets sent to us from my brother and his family.  Violets are the birth flower for February. February, the month I was born, and also the month our baby was due.  We lost another baby this week.  We're not exactly sure what went wrong and when, but neither sonogram this week showed a heartbeat, and I was admitted into the hospital for a D and C.  

As a parent you try to give your kids the best of everything and protect them from harm.  Sometimes you succeed and sometimes you fail.  A friend shared this poem with me, and during this time of mourning it has helped me feel like less of a failure.

An angel from the book of life

Wrote down my babies birth.

And whispered as she closed the book...

"Too beautiful for Earth."

DC

Week 61

Happy Father's Day!

The kids absolutely adore Phil!  He is definitely a hands on kind of dad and always finds time for them, and me.  Here are pictures of them with the gifts they made at their schools. 

a tool belt from Ryan

a tool belt and hand drawn picture of daddy from Julia

 

a picture frame painted by Ryan



The front of Julia's card

The inside of Julia's card

Ryan's card; we were so surprised when we opened it up and saw it was from Ryan.  Look at all of the writing he did!

Inside of Ryan's card

 

The questions Ryan answered about Phil

This is Ryan's last week at PARC.  I know he will miss going there and we will certainly miss the comfort of knowing that he was there in great hands!  A HUGE thank you to all of the teachers and therapists that worked with Ryan this past year.  He has come such a long way and you have played a big part behind his success!  I know we posted these pictures last week during his graduation blog, but we're posting again to give another shout out to Ryan's teachers!



For graduation gifts, Ryan received lots of new letter and number books to help prepare him for Kindergarten.  Here he is practicing writing his letters, which is a big deal because he isn't too fond of writing.   



Ryan is not so great about sharing his things.  For weeks I've been trying to get him to agree to let his teacher borrow our copy of the movie Tangled.  He loves his teacher, but he wouldn't let her have the movie, even for just one night.  To Ryan, it's just "not right" for the movie to stay with someone else; it's his and it needs to stay home with us.  One day I was able to sneak her the movie without Ryan seeing, and we had to bribe Julia not to say anything because she of course doesn't miss a trick and notices everything!  On a similar note, Ryan puts together these elaborate train sets on the floor.  When he goes to bed, our cat likes to go sit inside the tracks, and I'm sure she does the same while we are at work/school.  I'm not sure Ryan would approve of sharing his train tracks with Helen!

When the kids are away, the cat will play!

Last week of school, hang in there everyone! 

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

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