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 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 160- Happy Birthday Ryan!

Happy Birthday Ryan!  It has been a very eventful seven years but we would not trade them for anything.  We love you so much and we are proud of you for all that you have accomplished and all that you will accomplish.  Our "baby Ryan" is growing up. 

Seven years old!

Getting too big to sit on Grandma's lap!  

Thrilled to finally get some cake!  

Mother's Day

I am constantly amazed at how committed Dawn is to this process.  If there is a doctor's appointment to be made, she somehow finds a way to get it weeks ahead of everyone else.   She is on top of Jack's appointments and what he needs at daycare, Julia's Irish step dancing competitions and soccer games, and Ryan's Religion homework and when there is a party in his classroom that we need to send in some GFCF cupcakes!  She is the person that holds us all together and without her we (me) would be a complete disaster!  How she finds time to develop amazing lessons for her students and all the other things that she needs to do for her job is a mystery.  Yet each day she gets up, and shows us all the love and grace of a person without a care in the world.  It is amazing and Ryan, Julia, and Jack are the luckiest children in the world having Dawn as their mom.  Happy Mother's Day beautiful!

All together with the best mom ever!  With some drool and ketchup stains!

Ryan Express shirts on Friday and pins

Mahopac Middle school showing their support!  

On Friday, Dawn received a call from the Assistant Principal telling us of another incident where Ryan broke a rule to enforce a rule.  During reading time, Ryan choked a student that was not following the rules, and then at lunch told the same boy to look under the table and then he kicked him in the face.  This is the fourth incident this year where Ryan has resorted to violence to enforce a rule in school.  We had an appointment with Dr. Hahn that afternoon and Ryan refused to talk about it.  He hid behind me the entire time and refused to talk to the doctor about it.  After this latest incident and the fact that we do not believe the other medicine is working, we decided to give Focalin a try.  This is similar to Ritilan.  Focalin (dexmethylphenidate) is used to treat ADHD.  The psychiatrist still wants us to keep giving the Fluoxetine to Ryan and we have an appointment with him at the end of the month to assess how things are going.

We gave Ryan the Focalin a try this weekend and he was zooming!  It is a time released drug and a few hours in, he was all over the place.  He was talking a mile a minute and went from one thing to the next.  We noticed that this was about 2 to 3 hours into the medicine and then he calmed down after an hour.  We assume that this is just his body getting used to the medicine and are hoping for the best as we give him this new medicine and send him to school tomorrow.  Dawn is emailing his teachers to give them the heads up in case he is all over the place again tomorrow.

PC

Week 148

More daily meltdowns for Ryan, coupled with a bout of head lice for Julia and a fever and stomach virus for Jack, made for another busy and stressful week in our house.  But it wasn't all bad so I want to focus on some of the good this week.  First I have to say that Ryan's and Julia's report cards were excellent.  Ryan improved academically in many areas and Julia is above grade level in many areas.  We're so proud of them!

Celebrating my birthday

A play date with cousins:

I made Ryan grain-free peanut butter chocolate chip cookies, and he loved them.  One of my friends shared the recipe site with me.  You would never believe that the cookie is made mostly of chick peas, but they do taste best when warm and the chocolate is gooey.  Here's the website for the recipe:

Grain-free peanut butter chocolate chip cookies

DC

Week 80

Goal!!!  Ryan scores his first goal in soccer.  He was so excited that after scoring he ran to the middle of the field and jumped into his coach's arms.

The goal happened just before halftime and although I didn't get him scoring on video, I did get this at halftime...

 

Due to the storm this past weekend Ryan had quite the treat having a sleepover at his cousin Amelia's house, spending one night sleeping in our room, and having his first snow day of the season off from school.  We were out of power and once we got our power back we still didn't have heat, but now everything is back and hopefully we'll get back on track and schedule.  

The kids spending time with nonna for her birthday.

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

Day 41

Happy Birthday Phil!

Ryan, Julia, and I were invited to Phil's job to join in the celebration for his birthday. Ryan did very well eating his GFCF cookies while everyone else had birthday cake. Prior to this diet he would have had a full-fledged meltdown if we told him he couldn't eat chocolate cake. But he was content eating his cookies.

Prior to that he had his second "interview" for a new school this fall, and the directors feel he will fit right in and accepted our application. One more thing to check off of our list of things to take care of to set up Ryan's schooling for September.

Phil thought we could go out to dinner at the Outback but at 4:30 the kids were "off the wall" and we thought it best to stay in for dinner. Ryan didn't have much of an appetite. We made turkey burgers and put his on GF toasted bread but he only ate about 1/3 of it. He was a bit cranky the rest of the evening and I'm thinking it may have been from something he ate earlier in the day.

We began him on another supplement tonight, a type of vitamin E. It is the 4th one that Dr. Bock suggested out of the 6 we took home. So combine these four with the three we were already doing prior to seeing Dr. Bock, and we're up to 7. It took over 10 minutes before just to prep all of his "medicines". Some are liquid and were added to his drink. The capsules were broken open and mixed with other foods.

We have a friend coming over for dinner tomorrow night. I think we might try our first take out pizza since we started the diet. We'll put Ryan's pizza in the oven and get him psyched about it and then maybe he won't feel so bad when he sees the box from the pizzeria. We'll let you know how it goes! Until then...

DC