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
                                                                       

A Follow Up to Week 39

I feel it is necessary to again express our gratitude for all of the support we've received from family and friends. We are healing emotionally and physically, and while it is time that is necessary for the healing to take place, time will not answer our questions or cure our uncertainties. We still don't know why this happened, and will never know for sure. We will never know if the baby was a boy or a girl. And we won't know if this will happen next time until we find the courage to try again.

Over the past couple of days we've received numerous messages from people sharing similar stories. We've heard about early miscarriages, miscarriages close to the baby's due date, single miscarriages, multiple miscarriages, miscarriages to one twin, miscarriage of a set of triplets, and 7 miscarriages in less than a year and a half. Some of these stories we already knew about and we were able to reach out to these couples to answer our questions and for support that others didn't know how to give to us.

But most of these stories we were hearing for the first time. I'm not sure why it is so taboo to say that you've had a miscarriage unless it is shared with someone who has also miscarried. It's so puzzling to me. Now that we've become part of this "secret society" we're priviledged to hear about others' stories. It has shown us that miscarriages are far more common than we ever thought and we are now part of this community that many people we know, including friends, family, co-workers, and even one of my doctors, are part of. It has been theraputic to write about our experience and hearing about the experience of others helps to put things in to perspective.

When we began this blog back in April we knew that it would open up our lives to everyone and we were okay with that and still are. We've always wanted to be a source of support for a family in need, and still do. While the experiences may have changed, our candidness has not. We respect people who wish for their lives to remain private, but also feel for them and hope that they are receiving the support they need. It is difficult to place your faith and trust in others; I know this all too well. There will indeed be some feelings of disappointment at times because not everyone will rise to the challenge. But for the most part I've found that people want to help, you just need to give them a chance. That is what we are doing now, and in return, we will help others when they are in need.

On a positive note, next week's post will be our 100th post!  So much has happened and we've come a long way since that first post back on Saturday, April 17, 2010.  Looking forward to more great things to come!

DC

Week 39

Ryan's Smile Shines Through the Darkness

Through daddy's eyes:

What can you say to someone that has lost a child?  I have asked myself this question too many times in my career as I have gone to hospitals and funerals for students that I have lost over the years.  The look in a parent's eyes is heart wrenching.  Now that I have lost a baby I know that there is nothing that you can say to help.  Granted our child was never born but the sense of loss is still felt.   

I really admire Dawn for all that she went through and for what she will go through.  I have to remind myself that we have two beautiful children and we have been very blessed with people in our life who dropped everything to help us.  Our family and co-workers really stepped in and made a very trying time much eaiser to bear.  I really do not know how people go through this over and over again in the hopes that they will be able to carry one to term.

As for Ryan and Julia they were so excited that Dawn was having a baby.  They were convinced that Dawn was having a boy AND a girl.  As the week progressed Ryan noticed that something was wrong and would ask Dawn if she was feeling better today.  When she would reply, "No, not today", he would reply, "Okay, maybe tomorrow" and run off.  The day of the miscarrage, Ryan came right home and curled up with Dawn on the couch.  We did not tell them but he somehow knew something was wrong and just wanted to be near his Mommy. 

Each day will get a little better and Ryan and Julia will always be a great way to forget the loss for a little while.  But we are now part of a group of people who understand a loss so profound that there are no words of comfort.   

PC

Through mommy's eyes:

I don't know how I would have made it through this week without the support of my amazing husband, our family and friends, and especially Ryan's love.  There were days Ryan would curl up on the couch with me and snuggle.  And not a day went by without him asking me if I was feeling better.  He was so concerned that I wasn't feeling well; he's my sensitive child.  I actually felt guilty letting him see me in physical and emotional pain.  And he was such a good boy; so well behaved, so cheerful, so loving!

Both Ryan and Julia were very excited about the baby.  They would put their ears to my belly to hear if the baby was laughing or crying, and they would sing it songs.  They were convinced that I was having a boy AND a girl, and would ask if they could feed the babies applesauce.  I hope one day soon we can tell them again that they are going to have a little brother or sister.  Until then we will remain hopeful, just as hopeful as we were all week.  Despite warnings from the doctors and reports that the baby's heart was beating slow, we never lost hope.  Just moments before I miscarried I was teaching my students and looking forward to the ultrasound in the afternoon, thinking that I was going to hear that the heart rate miraculously increased.  A part of me was in denial! 

I have a newfound respect for the women who have been through a similar loss, and for the couples who endure so much to have a child.  And in the midst of everything, I still feel so blessed for everything that we do have. 

DC

Week 38

I made a GFCF egg free pizza today.  This was my second attempt at doing this from scratch and this time it came out much better than last time.  I think over the months I've certainly improved my GFCF cooking techniques.  I'm usually an impatient baker but you really need to slow down when cooking GFCF items and follow the directions carefully.  There aren't many shortcuts you can take.  If an ingredient works better if it is at room temperature, then you need to be patient, and plan far enough ahead, to make sure it is at room temperature.  Here is the pizza cooking in the oven.  It smelled yummy and Ryan was very excited!

Here's a video of Ryan eating the pizza; he ate two slices!

And here's one of Julia too.  She liked it until she found a piece of basil in the sauce and flipped out!

Ryan's skin continues to get smoother each day.  On most days we give him the oils in the morning and the evening.  I shouldn't really say "we" since Phil is usually the one who takes care of the oils.  Phil has also been the one to give Ryan his injections lately.  We've had a bit of a setback in the injection department.  Ryan now gets himself all worked up like he used to, and the process usually takes about 15-20 minutes because he stalls and makes excuses, and changes seats and positions a dozen times before we firmly tell him this is it or we're holding him down.  I'm not sure why the sudden change back to what it was since he was doing so well.  But now whether it's me giving the injections, or Phil, Ryan tries his best to avoid them.

A funny little story to share... Ryan looking in the mirror says: "Mom, I'm getting big.  Soon I'm gonna go to college."  (For those of you familiar with it, I think he's been watching Toy Story 3 a bit too much!)  Speaking of Toy Story 3, we had a visit from Angela and Michael this weekend and the kids had a ball playing with their Toy Story characters with them.

We had a snow day on Friday.  Here are some pictures of the kids (and Phil) frolicking in the snow on Saturday.

The faster, the better!

Looks like Ryan took a snowball in the face, but this was him trying to throw the snowball at Phil.

Getting ready to surprise Julia with a snowball!

Attempting to make a snowman. 

Poor daddy got his workout today!

And don't worry, I got plenty of action with the kids this week too.  Here's a shot of Ryan and I snuggling on the couch.  He's pretending to be Frosty with a fake pipe in his mouth!

DC

Week 37

Happy New Year!

Ryan enjoyed his week off from school.  We stayed home for the most part except for a few small day trips.  He loved playing with his new toys and his Toy Story 3 Train was definitely a favorite!  Since Ryan's skin is still so dry and rough we decided to avoid mustard on his sandwiches this week.  We are also trying to give him the double dose of oil each day.  His skin seems to be a little bit better but he still scratches it a lot and rather than it feeling like rough sandpaper it feels like light sandpaper.

The kids enjoyed the new tv set up in the sitting room attached to their adjoining bathroom.  Here they are hanging out in their comfy chairs.

Ryan wearing papa's hat.  He looks like a little Irish boy.

Ryan, who goes to bed around 8pm every night, actually stayed up for the change of the new year.  Well, he fell asleep from 5:30 to 10:30 beforehand so he was wide awake at midnight!  He watched the ball drop on TV and about 10 seconds into all of the New Year craziness showing on the screen he said, "I don't like this show."  We all got a good laugh with that one!



On a sad note, my Great Aunt Rose passed away this week.  Here's one of my favorite pictures of her with Ryan because she was still able to see and she loved it when Ryan laughed.  It was taken on St. Patrick's Day in 2007.

Ryan smiling at his Great Great Aunt Rose

Back to school tomorrow.

DC