Week 49

The fourth annual World Autism Awareness Day is April 2, 2011! April 1st into the 2nd is when you'll see several famous buildings display blue lights in honor of the Autism Speaks "Light it up Blue" campaign.  Be sure to wear blue and spread the word!

 It's been a while since our last post.  Phil and I were in Palm Springs, CA last weekend for his brother's wedding.  My parents stayed at our house with Ryan and Julia, and we flew out there for 2 nights.  We missed the kids a lot but knew they were in good hands.  At one point we called to check in and Ryan got on the phone to tell me that he was watching the car races with his Uncle T and that his favorite car is the green #5.  I asked him about it the other day and here's the video of his response:

Ryan still has a cough and had a rough week at school leading up to our trip to CA.  We were getting reports of bad behavior during afternoon circle time just about everyday.  To show some of Ryan's rigidness and the humor behind some of this, here's what happened on one of the days.  Ryan was fooling around with another child during circle time so the teacher asked Ryan to change his seat.  Ryan knows that one of the rules during circle time is that you don't move or change seats.  So now the teacher is asking him to move his seat, and he is telling her no.  He argued with her that you don't change seats during circle time and that she wasn't allowed to do that.  His Special Education teacher had to speak with him about listening to the teacher at all times.  Of course Phil and I also had several similar conversations with him all week.  But that one story gave us a good chuckle.  If you give Ryan rules, expect that at some point he may throw them back at you and call you out on it.  We've learned that lesson several times!

This week I spoke with one of Ryan's teachers and she put him on the phone with me to say a quick hello.  I made a big deal about him being a good boy in school that day so far.  He remained good that entire day and when he got home we discussed how his teacher and I will be checking in with each other about his behavior.  I showed him the notebook that she uses to write us a note each day.  So this entire week the first thing out of his mouth when I picked him up at daycare was, "Mommy I had a good report today!"  We made a big deal about checking the book and complimenting him on his behavior.  He had 4 good reports in a row and we're hoping that the bad behavior during afternoon circle time has passed.  Here's a video of Ryan excited about his good reports.  You can play it on here or if you click the Rock and Roll Video link, it will bring you to the video on our You Tube account.

Rock and Roll Video

The Autism Speaks walk is on Sunday, June 5th in White Plains this year.  I know that it is a very busy weekend for many of our family and friends.  It is the same weekend as the Putnam County Relay for Life which is held on my school's campus and many of my teacher friends and families in Mahopac participate in this event to raise money for cancer research.  Also, we recently found out that it is the same day as the baby shower for one of my friends.  I know that she will understand if we attend the walk and I am unable to attend the baby shower.  For a couple of months Phil and I have been debating if we are going to participate again this year.  We have our reasons for doing it and not doing it, but most of all, we'd like to hear from all of you.  We don't want to impose on people to join us again this year but if we have a group interested in walking, we will organize our Ryan Express team to walk.  So if you are interested in joining us again, or if you didn't walk with us last year and would like to join our team, please let us know.  We do need to make a decision soon!

Here are two links that you may be interested in regarding YAI conferences coming up in May and October.  The International Conference takes place this May 2-5 in NYC.  The Austism Workshop on Social Thinking is on October 11, 2011. 

http://www.yai.org/resources/conferences/yai-conference/

http://www.yai.org/resources/conferences/autismconference/

I will end with one more video.  In this video Julia tries to get Ryan to say "stinky underpants".  He almost does it, in fact he starts to make the "s" sound in "stinky" but shows self-control and tells her that he doesn't say "bathroom words".  Phil and I are constantly telling them that certain words are "potty words" meaning they are dirty and we don't say them.  We were very proud of Ryan demonstrating this kind of awareness and that he did the right thing despite the peer pressure.  Julia, on the other hand, still needs some more working with!

I was unable to upload it so click here to view it on our You Tube account:  Stinky Underpants Video

 DC

One year ago today...

Here is the entry from my diary, written on March 16, 2010:

The statistics say that every 20 minutes, a child is diagnosed with Autism.  At 3 pm today it was our turn.  Ryan was diagnosed with high-functioning Autism.  While this is one of the better diagnoses on the spectrum, it was not an easy thing to hear.  His life as he knows it, and as we know it, will never be the same. 


Phil and I noticed there was something different about Ryan, something special and unique, and we knew it needed to be looked at.  But I thought maybe I would be told I was wrong, and it was just a phase. 


I feel numb thinking about this and what the days ahead will bring.  As his mother I just want him to be happy.  I want the best for him.  I don't want him to miss out on anything, and hope he lives his life filled with laughter and love.

A year ago we felt weak and defeated but we've learned that you don't know how strong you are until being strong is the only choice you have.  Phil and I will never stop fighting this fight.

DC

Week 47

This was a tough week for us with everyone being sick. Ryan was still sick most of the week. We kept both Ryan and Julia home on Monday and tried to send them in on Tuesday.  Half way through the day their daycare called to tell us that Julia was now sick and Dawn went to bring her home.  When I went to pick up Ryan later that afternoon he was standing on one of the outside play ground pieces and asked me "if he could go home now".  Normally we have to drag him off the playground but he looked so sick just standing there we kept him home the next two days.  It was a total team effort between Nonna and Grandma coming down and watching both of them the rest of the week. On Friday Ryan was well enough to go to school but Julia was still sick and went up to Nonna and Papa's house. Everyone is starting to get better but it was a long illness! 

This week we were supposed to drive up to Dr. Bock on Tuesday. However, with everyone still being sick this was not a possibility. So we set up a phone appointment.  Dr. Bock was pleased with Ryan's progress and was glad that he did well on the trip to Pittsburgh and Florida. He is going to write us a letter in support of Ryan on the GF/CF diet so we can add it to his IEP at his annual review this May. He also put Ryan on a new supplement called Phosphatidylcholine concentrate.  This is to help with developing and repairing neurons in the brain and to help with the break down of fatty acids.  He is still unsure as to why Ryan's eczema comes back so he is going to send us back for more blood work to look at fatty acid levels, vitamin D, iron, and minerals. 

The kids seem to be back to their old selves again.  Here they are dancing together...

We did not mention in last week's blog that we registered Ryan for Kindergarten! However, you would think that this would be an easy thing but of course it does come with it's transportation dilemma. The form for requesting transportation is due by April 1st. However, Ryan's annual review is not until the end of May. We will not know if Ryan is in morning, afternoon, or in the all day special education kindergarten (yes, our school district still has half day) until the middle of August. Our school district's response is to fill out the form letting them know where to pick him up and drop him off for all three scenario's.  However, how can we go to a day care facility and ask them for a spot if we do not know what we need? While I am sure that the transportation will work out it just causes us unnecessary stress and this always seems to be the one area that we get the biggest headaches with when dealing with Ryan and his programs.

Ryan came home with a clay dinosaur that he made at PARC.  He was quite proud of his creation!

PC

Week 46

We don't have much to report this week except that Ryan hasn't been feeling well for a few days.  We received a call from his daycare on Friday morning stating that he wasn't feeling well so they didn't send him on the bus to PARC.  Instead, Phil picked him up (and Julia as well who seemed a little mushy) and brought them home.  They both spent the last few days with high fevers up to 104.1.  Ryan was so weak on Saturday that we had to carry him from room to room.  Although he complained of stomach aches, he didn't seem to show any signs of a stomach virus.  The quick strept test at the doctor came back negative for both kids, but Julia's urine showed a high concentration of white blood cells so she has an infection and they sent it out to the lab to get analyzed.  Julia is on an antibiotic but for now the pediatrician feels his is just viral and it needs to pass through his body.  We're hoping to hear the lab results tomorrow.

He looked so sad and weak and his voice is so scratchy and altered that I didn't want to post any pictures or videos this week but we're hoping he'll be back to his usual self soon.  In fact, as I write this, his temperature is around 100 and he's in pretty good spirits, about to head up to bed. 

I do have one funny story to share.  Phil came home from the store with a black suit that he purchased for his brother's wedding.  Ryan asked to see it and said, "Daddy, it's all black.  You can't wear that at night cause nobody will see you and they will bump into you."  We thought it was so cute!  I can't wait to hear what he says when he goes to get fitted for a tuxedo this summer for a wedding that he is in this October!

Ryan has an appointment with Dr. Bock on Tuesday so we'll be sure to report about that in next weekend's blog.  Have a great week everyone!  And stay healthy because there is a lot of nasty viruses going around!

DC

Week 45

Here is a great shot of Dawn and the kids celeberating Dawn's Birthday just before the Winter Break. 


Celebrating Dawn's Birthday

Vacation!

This past week we took the kids on a world-wind trip. We started with an 8 hour drive to Pittsburgh, PA to visit Aunt Anne, Uncle Chris, Megan, and Kate. Ryan and Julia did great on the trip. We only stopped once for a quick bathroom break and then right back into the car. We finally got into Pittsburgh around 6:00 PM and then went out to dinner. Of course the restaurant was extremely busy and we had to wait, but Ryan did great waiting. We had to stay at a hotel and since it was a short stay we all stayed in the same room. He did great but did have a little difficulty understanding that he could not sleep in the middle of the bed since we all had to share. We had a great time and Ryan's cousin Megan loves him! She spent the majority of the time wanting to hold his hand where ever we went and wanted to show Ryan her train set. We visited the incline in Pittsburgh, that goes up and down the side of a huge hill that over looks the city and Heinz field were the Steelers play. Ryan loved it and we have a picture of both Ryan and Julia with big smiles in the car on the incline. We then visited the children's museum and had a blast. There was a huge layout of the Pittsburgh area with trains going around the exhibit and he ran around the table telling everyone what to look at next.


Ryan and Julia on the Incline in Pittsburgh



Ryan and Megan looking out over the city of Pittsburgh



Both fast asleep on the way to the Latrobe Airport



Singing Happy Birthday to Kate and Dawn

Each night the kids got to bed late and they handled it great. Julia is our night owl but Ryan follows the simple philosophy that if the sun is up, then he is up and if the sun is down, then he is down. However, he handled the late bed time in perfect stride. He had a blast playing with his cousins and had a great time with no meltdowns.

We then flew out of the Arnold Palmer Airport in Latrobe, PA in a snow storm to Fort Laurerdale, FL to visit Dawn's grandmother, Grandma Mille. Ryan loved the airplane ride. He was so engrossed with the little card that the airline attendants go over. He clipped it to the tray table and studied it for a good 20 minutes. When we were about to land he asked if we were landing on the water? When he found out that we would be landing on the runway he announced to our area that were not landing in the water but on the runway.

We did not land until 8:40 PM and did not get our car until 9:30 PM. To get to the car rental place was an adventure to begin with. We had to walk to a bus stop, take the bus to the airport car rental garage, then wait for the car rental van to pick us up to drive us to their location. Through it all Ryan was great and found it all a big adventure. We did not get to Grandma Millie's condo until 10:30 PM.



Happy to be in Fort Lauderdale, FL! 

 

Excited to be at Hallendale Beach! 



Ryan and Julia with their Great Grandmother Millie.

Reading the safety card! 

Studying the card! 

We spent the next few days driving all over the place. We found a store that sold organic and GFCF food items and then spent the rest of the first day at the pool. We were the only ones in the pool and this was the first time that he felt comfortable to be in the pool without his swimmies. It was nice feeling comfortable being able to watch them from the side of the pool and not having to be on top of them in the water. The same went for the next day when we went to Hallendale Beach. They both played for hours at the edge of the ocean while we were able to relax just watching them play. The second evening we went to visit my Aunt Mary and Uncle Bill to have dinner. The only bad part of driving in Southern Florida is the traffic. It took us an hour and a half to drive 25 miles. Another late night but he did great.

The kids with Phil's Aunt Mary and Uncle Bill

 

The next day we found a Children's Museum in Fort Lauderdale that they loved. This is a video of a huge gravity clock in the front of the museum that he loved. They had all sorts of hands-on exhibits that they both enjoyed. They spent over an hour in one place that had an exhibit that allowed you to pick oranges from a tree, put them in a wooden case, and then put them onto a conveyor belt that put them back on the tree. He spent the majority of the time playing with this exhibit and the other kids came into this area. He shared and pretended to play both with his imaginary scenario and theirs. It was great to see.

On the trip home it was another long day. We got to the airport with plenty of time considering we had to do the entire process in reverse and boarded the plane without too much hassle through security. They did have to test each bottle of his medicine but they did not make a huge fuss about it and the TSA agents were very pleasant about the whole thing. However, the plane had a mechanical issue that caused us to have to return to the gate and get off to wait for them to fix the issue. This delayed us for about 2 hours but we finally landed back in Latrobe around 8:00 PM.

Ryan handled the whole experience wonderfully. He rolled with the delays, the different schedules, and all the little expereinces that could cause a child with Autism to have major metldowns. We have an appointment with Dr. Bock in 2 weeks and we can not wait to give him the report about how he did on this trip. Before this diet and treatments this trip would have been a disaster. Both Dawn and I were thinking that we probably would not have attempted this trip but Ryan was fantastic.  We were so impressed with his patience and flexibility!

Below is a clip of Ryan having fun at the Childrens' Musuem and one of him hanging with his sister and cousin. 

PC

Week 44

Asking for prayers this week but for someone else...

In lieu of the time you would have spent on our blog this week, we are asking that you read about a little three year old boy named Ty Louis Campbell.  He is fighting a rare and aggressive cancer.  I choose "fighting" because that is exactly what he is doing.  We've been following this blog since the fall and it is impossible to read without shedding tears.  It is also impossible to read without reflecting on your life and appreciating what you have.  Whenever I complain about something I feel so guilty, more so than ever since Ty has entered my virtual world.  Just looking at his picture and knowing what he is going through certainly helps to put things into perspective. 

Here's the link to Ty's blog:  http://tylouis.blogspot.com/ Please read Ty's story and keep him in your prayers.  Your prayers are working for Ryan... I hope they do the same for Ty because he needs a miracle!  May God bless Ty and his family!

DC

Week 43

Happy Valentine's Day everyone!

In the spirit of Valentine's Day and LOVE, here is a video of Ryan with his cousins Amelia and Alyssa singing a song called "I Love My Nonna and My Papa", taught to them by none other than their nonna!  Be careful, if you watch it too many times, the song gets addicting!

And what would a Valentine's celebration be without lots of sweets???

Ryan enjoyed his special cake and cupcakes!

Unfortunately this week was not all sweets and smiles.  Ryan had some tough days.  We received a couple of bad reports from school revolving around Ryan having difficulty following directions.  After reading one of the reports, I asked him about what happened at school and he hit me and ran to sulk in his room.  We noticed "off" behaviors at home as well.  He had difficulty sharing and displayed lots of odd behaviors like running around in a zone, talking to himself, and making weird movements with his hands.  We haven't seen this kind of Ryan in so long and to be honest, it scared me a little bit.  Even his appetite at dinner was not normal and several days during the week his cheeks were red.  This led us to believe that he ate something that he shouldn't have.  But what??? 

I received the following information from the mother of one of my students.  Here is a blurb and a link for an upcoming conference, and also the link to an online newsletter called Autism Spectrum News.

2011 Young Child Expo & Conference brings together top leaders to provide the latest information about essential topics in early childhood development. Early childhood professionals and parents will learn also about services, resources, and products to help all children reach their full potential. In one unique event, this conference integrates learning about typically developing children as well as those with special needs, including autism.  http://www.youngchildexpo.com/

Here's the link to the newsletter: http://www.mhnews-autism.org/

Ryan and Thomas watching a Thomas the Tank video.

Here are some pictures that I took last week but did not post on last week's blog.  I had experimented with making GF bread for the first time. Ryan was so excited as it was baking. He kept asking what the smell was and if he could eat it.

Catching a whiff while it was cooling down.

It was delicious. We had some warm and there was plenty left over to slice and store for Ryan to eat during the week.

Last week I also made a huge GFCF and egg-free chocolate chip cookie for the kids.  I used a recipe from a cookbook I received as a Christmas gift from one of my students.  It's called The Food Allergy Mama's Baking Book by Kelly Rudnicki.  The recipes are all dairy, egg, and and nut free.  They are not gluten free but I am able to swap out the flour called for in the recipe with some GF flour varieties and Xantham gum.

DC

Week 42

Ryan's class at PARC participated in a mini Olympics among their students.  Ryan was very excited to come home each day and tell us things such as how you are supposed to line up to do a relay race.  He brought home a medal and two award certificates.


Ryan received a medal and certificates for the Relay Race and the Javelin Throw



YES, Ryan got a haircut this week!  He let me cut it with the electric clippers!  Afterwards he looked in the mirror and said, "This is a bad haircut, mom!"  He's also been keeping his coat on with the hood up when we see people we know because he doesn't want them to see his hair, but then when they do they say how handsome he looks and he gets a big smile on his face.  It is really short but not as short as a buzz cut.  I was so surprised that he let me use the buzzer, especially near his ears.  But he did a great job staying still (granted he was watching a movie too so that helped!).  I'm hoping that if he'll let me use the machine the next time too that one day soon he can get his first professional looking haircut at a barber shop.  While I seem to be improving my haircutting skills, I do feel bad when his haircuts come out looking less than perfect.

On one of our numerous snow days I was peeling Clementines and asked Ryan if he wanted a piece.  He then proceeded to jam his straw into it so that he could get the juice out.  When I told him that wasn't how you eat it, he took out the OJ carton and replied, "Like this mom." 

An "A" for persistence and originality!

And once he realized he wasn't getting any juice out of the whole orange, he tried with the piece I gave him.  Of course I captured it on video!

A friend of mine alerted us that Fox News held a segment regarding how diet is used to reverse the effects of Autism.  And Ryan's DAN doctor, Dr. Bock, was interviewed. 
Here's the link:  Can Diet Reverse Effects of Autism?
We had some trouble with the link working so if you are unable to connect, go to foxnews.com and in the search box type in the title "Can Diet Reverse Effects of Autism" and find the article that way. 


Here's what happens when you have at least 2 snow days a week for the past 4 weeks.  Here's Julia occupying herself. 

Ryan joins in at the end of this video after we convinced him to not dance naked in front of the camera anymore.

Not really understanding the concept of musical chairs but they played this way for more than 10 minutes. It tired the heck out of them and I was able to grade papers while I randomly pushed the play/pause button on the music videos on TV.

I'm not sure if I've mentioned this before in a previous blog, but I often worry about Ryan being bullied and made fun of in school.  Working in a school I see too often how cruel kids can be at times and how differences aren't always tolerated.  Through friends on Facebook I was made aware of the lyrics of a song called "Don't Laugh at Me" by Mark Wills.  Here is a link to his video on You Tube.  It sends a great message.  http://www.youtube.com/watch?v=FVjbo8dW9c8
My school is currently doing a big anti-bullying campaign and I am again trying to get an event going where a presentation can be made by Jesse Saperstein (remember him from our week 27 blog post?).

DC

Week 41

We're getting tired of all of this snow!  Ryan has had 6 snow days this month and it is not fun getting stuck in the house; he's not too crazy about playing in the snow once his clothes get wet.  We weren't sure how he was going to handle it, but he did really well on one of the days when we dropped Julia off at her school and he didn't get to go.  He can still be very stubborn at times and not like changes in routines, but he seems to be doing much better accepting our explanations to situations.  We received one of the "schools closed" calls while in the garage loading the kids into the car, and I thought it was going to be really difficult getting Ryan back into the house.  He was a bit confused and kept his shoes and coat on for about 10 minutes until he felt absolutely sure that we really were staying home.

The kids have been getting a bit silly being indoors.  Here's a video from one of our many snow days this month.

Both Ryan and Julia were very excited when our new musical cake plate arrived.  Here they are practicing for the weekend for Uncle T's birthday cake. 

"Happy Birthday, Take 1"

"Happy Birthday, Take 2"

And here it is for real...

At the end of the video Ryan said he wanted to help blow out the candles, but he didn't get there quick enough.  He spent the next 5 minutes pouting upstairs, but then came down to join us.  I think last year at this time he would have had a meltdown kicking and screaming on the floor in front of everyone, but he's definitely maturing and taking disappointments in stride.

The birthday cake was an ice cream cake and Ryan was fine having a bowl of his own GFCF ice cream.  My mom also brought some of his chocolate chip cookies and when Phil asked Ryan if he could have one he said, "No, those are only for me. They're not good for your tummy!"  I think it's funny how he is now repeating to us what we always have to repeat to him.



Ryan wasn't really into taking pictures but he finally sat down to join us.  But no smiles from Ryan for the camera today!

  

The kids helping Tommy open his gifts.

















And we'll end with one more video, which was taken last month.  This one is so special to us and we were saving it to put on the blog this week to share with everyone that we were having another baby.  While that is not the case anymore, we still wanted to share the video with all of you.  This was the first time while I was pregnant that Ryan and Julia heard my stomach growling and thought it would be a great idea to feed the baby apple sauce.  I'm so happy that we captured this on video!!!

DC

Week 40- Our 100th post!

It is hard to believe that this is our 100th post.  When we first started this blog we were just looking at it from a food point of view.  If you look back at our earlier posts we focused on food choices with Ryan.  Once we established a solid pattern with Ryan and he accepted the food without complaint we had a decision to make:  end the blog or change our focus.  For the both of us we are glad that we did not end the blog.  We have opened our lives to others and hopefully through our experiences we have helped others when they got the news that their child has been diagnosed with Autism. 

As I have re-read the blog in anticipation of this post I have a difficult time remembering how much Ryan has changed since April.  Even this past week we went a different way home and Ryan's reaction was so much different.  Before the diet if we had to go a different way home Ryan completely lost his mind.  This time he looked up, asked where we were going, and was satisfied with the answer.  He still gets stuck in routines but he can vocalize his route and explain why he wants to do it this particular way. 

Even at school we are getting good reports about his behavior.  He is calm and is following directions, he is making friends and is able to tell us about things in his day.  He even performed in a Christmas Show in front of a packed auditorium.  The old Ryan would never have been able to handle these situations and we sometimes forget just how far he has come on his journey. 

One of the biggest changes we have seen with Ryan is in his skin.  Those that have known Ryan know of the struggle we have had with his skin.  Below are a few before and after pictures to show the huge difference in his legs.  We are now giving him different types of oils both in the morning and evening.  When we ask him why he is taking his oils he replies "To get smooth skin". 


Saturday, January 22, 2011

Wednesday, April 28, 2010



  

We finally had an opportunity to go to Rocco's Pizza in Mahopac to try their GF pizza. He loved it!  He ate three slices.  Granted it did not have any cheese but Dawn thought of adding pepperoni to the pizza.  The people at the place were very understanding and we all enjoyed ourselves.  It is nice to go to a Pizza place and not have to worry about what Ryan will be able to eat. 

We were also able to have Amelia stay over one night this weekend.  She is now in first grade and as the picture shows below, they are now the same size.  He is going to be such a tall boy when he enters Kindergarten next year.  The fact that we are even entertaining the idea of regular Kindergarten is something at the beginning of this blog was not even in our thoughts. 

Thank you to everyone for keeping us in your thougths and prayers and as always we will keep you updated.

PC