Week 105

April 17th marked an important anniversary for us.  Yes it was my brother's and sister-in-law's anniversary, but they are sharing their day with another event as well.  It is the 2 year anniversary of Ryan starting the GFCF diet.  We feel this is a huge milestone.  When we began we had short-term goals in mind.  Never did we think we'd last a year, let alone 2 years!  Each time we try to deviate from the diet the results bring us right back on track.  There are times when Ryan has to "cheat", sometimes several times a week, and we pay for it afterwards.  It seems his skin is paying for it as well lately as the smooth, soft skin he had a few months ago has been replaced with patches of rough, itchy, blotches.  I have to admit, we've gotten a bit lazy.  We no longer bring his food with us when we go to parties, or at least to the extent that we used to.  We let him have what is there.  He's even more inclined to cheat lately.  He recognizes the difference in taste and sacrifices the way he is going to feel the next day, to enjoy living in the moment.  He also knows exactly what to say to avoid an argument with us... smart little munchkin! Ryan: "It's not gluten-free, so I'm just going to have one, okay?"

Our goddaughter Amelia made her First Holy Communion this weekend.  Here are some pictures of the special day:

On the 17th this week I had a follow up appointment with the specialist to look at the baby's heart and bowels.  The baby is growing beautifully and perfectly on track.  He/she is at 2 pounds 1 ounce.  The bowels and entire digestive system seems to be working normally.  I was there for over an hour and the entire consumption/elimination process was witnessed.  But there are still some spots on the small intestine that will keep me going back to see this specialist, at least for one more follow up before the baby is born.  It may be signs of an infection, but the bowels are so small it is difficult to tell.  So she wants to keep monitoring that section and the baby's growth, and it is suggested the baby gets an x-ray after birth.  If there is a problem with that section, there is plenty of small bowels compared to large bowels, so it is the easier of the two to perform surgery on.

Pictures from Ryan's soccer game this week: 

There is a noticeable improvement from the fall season to the spring season, and Ryan seems to be enjoying himself more.  Although he's had 2 games and hasn't scored a goal, he remains positive.  He's scored goals in his scrimmage matches and he just seems to be happy to be doing something different.

We received Ryan's Quarter 3 report card this week.  He received 2's (Developing Skills to Meet the Standards) and 3's (Meets the Standards) in most areas.  Under the responsibilities, he scored "Needs Improvement" in two areas:  Engages in activities, and Demonstrates self-control.  Here are the comments from his Kindergarten teacher and his P.E. teacher: 

Perfect attendance so far...impressive!!!

His list of speech and language goals also arrived and 8 of the 10 are "progressing gradually", meaning he may or may not meet this goal by the target date, and the other 2 are "progressing satisfactorily" meaning he is on track to meet the goal by the target date.  I think we would have seen much different progress had Ryan continued speech services from last school year into this school year.  His S&L remained stagnant and did not improve enough on its own compared to his increase in age.  His annual review is coming up in May so at least we have proof that he needs the help and needs to continue to receive services in first grade.  We did get a call from the school and they are going to recommend the inclusion program for 1st grade.  This is what we expected him to receive this year, but they did not have this program at the kindergarten level at our particular elementary school and we opted to have a shared aide for Ryan rather than bus him to a different elementary school.   His teacher feels he needs more support than he is receiving from the aide in the regular classroom.  With the inclusion program, he will be in an integrated setting (both regular and special education students) and receive the support from a special education teacher and teacher assistant, as well as the regular ed teacher in the room. 

In the mail this week we received a framed puzzle of a picture from last year's walk.  Ryan, and Julia, immediately noticed that one of the pieces was missing.  We tried explaining to them the symbolism and meaning behind the missing piece.  The company taped the missing piece behind the frame.  Phil seems to think it is there in case you couldn't "handle" not having a piece missing you could fill it in.  I like to think it is taped there in hopes that we can complete the puzzle one day when the mystery of Autism is solved and a cure is discovered. 

Ryan knew that this said "The Ryan Express" and "2011".  When I pointed to the $ amount, he said, "That means a lot of money!"

Our team has been established on the official walk site.  If you would like to walk with us on June 3rd, please click the link below to join our team:
The Ryan Express Team Page

DC

Week 104

Welcome to week 104!

This week started the spring season of soccer.  It was a great start to the season.  It almost turned into a disaster as Ryan was accidentally hit in the face with a ball just before practice started.  He was very upset and demanded that we go home.  He sat a few minutes off to the side and then wanted to join the group.  Last year this would have set him off and he never have rejoined the team.  This time, Ryan went to the parent that accidentally hit him in the face and gave him a hi-five!  At the end of the practice we had a scrimmage and Ryan scored a goal.  He was so excited.  At Saturday's game he did not score a goal but played a great game.  We are off to a good start and hopefully he will continue to enjoy soccer. 

Happy 10th Birthday in Heaven, Helen

Giving Helen a flower from Amelia.  Happy 10th birthday Helen.

Ryan's April Kindergarten project.

Ryan and Julia at Christening number 1 of the weekend!

Playing wrestling with the boys.

Mommy, Julia, and Ryan at Christening number 2!

Ryan letting Elaine know that he is cheating!

 Cheating at Tic Tac Toe!

Week 103 - Happy Easter

Working on the crafts our neighbor Carol brought over!

Ryan's finished products; he was so creative and patient!

Ryan's tooth is growing in, slowly but surely

Making dough with Grandma Millie... homemade raviolis!

Coloring Easter eggs

Planting seeds for watermelons and cucumbers

Ryan making his GFCF pepperoni pizza

Making pizza for the grandmothers

Ryan wearing his pirate hat Grandma Jeanne brought from Disney World

Fishing

Having fun on papa's swing

Easter morning

Ryan's GFCF Easter cake

 

Waiting for their new playmate to arrive!

Besties!

Easter egg hunt

Just as we were finishing our outdoor egg hunt, my dad's friend stopped by with a little boy, similar to Ryan's age, and Autistic as well.  Ryan did not hesitate one minute when I asked him to take some of his eggs out of his bucket and rehide them for the other boy to find.  Ryan even ran around with him encouraging him to look in different places to find the eggs he had hidden.  All four kids eventually started taking their own eggs, hiding them for this little boy, but it seemed like Ryan was the first to understand what the adults were trying to quickly do and he set a trend of acceptance with the rest of the kids.  It brought tears to my eyes to watch as these children, ages 4 to 7, gave up their prizes to make another child happy.  I was one proud mom and aunt!

DC

Light It Up Blue

April 2, 2012
Autism Speaks
Light It Up Blue Campaign

Our House

Our dining room

Radio City Music Hall, NYC (Thanks Uncle T!)

Rockefeller Center, NYC

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Empire State Building, NYC

Week 102

Today is the beginning of Autism Awareness Month.  In support of World Autism Awareness Day on April 2nd, buildings around the world will display blue lights. We will be lighting our house up blue tonight and tomorrow night.  It is pouring outside right now so we'll have to take a picture tomorrow night and post it on next week's blog.

And this year I had a blue extension placed in my hair.  Julia saw it and wants one too!  Maybe for the walk in June.

All week you may have heard announcements about new autism numbers being released.  Below I have a link to a video on CNN and one of the many articles released this week announcing these new statistics.  In summary, instead of 1 in 110 kids diagnosed with autism, the numbers are 1 in 88.  Autism is now being considered an epidemic because the drastic increase in reported cases during the past decade.  The study included data taken from 14 different states.  New York was not included in the study but New Jersey was.  Wait until you hear the statistics for New Jersey, which I can only imagine is a close match to New York!!!  And all of these statistics are based on data compiled from a study in 2008.  What will they be for 2012?

CNN video
A must see!

Article
If you don't have time to read the full article, I've cut and paste a couple of statements directly from the article:

An earlier report based on 2002 findings estimated that about 1 in 150 children that age had autism or a related disorder such as Asperger's. After seeing 2006 data, the figure was revised to about 1 in 110. The estimate released Thursday, based on 2008 data, is 1 in 88.

The study also found that autism disorders were almost five times more common in boys. And that an increasingly large proportion of children with autism have IQs of 85 or higher - a finding that contradicts a past assumption that most autistic kids had IQs of 70 or lower.

Also, higher autism rates were found in some places than others. For example in Utah, as many as 1 in 47 of the 8-year-olds had an autism spectrum disorder. In New Jersey, 1 in 49 did.

There are many opinions out there as to why these numbers have increased so drastically.  Lately I've been reading articles about the link between the drug Terbutaline and Autism.  From what I understand, Terbutaline, which is used to control asthma, is also used to delay premature labor.  More and more studies out there are showing that it is not safe for children exposed to this drug during gestation.  Some women are given the medication orally or put on a pump.  When I was pregnant with Ryan, I landed in the birthing center at 30.5 weeks.  I was hooked up to the monitors and contractions were coming less than four minutes apart.  Within minutes the doctor was notified and a decision was made to give me a Terbutaline injection to stop the preterm labor.  It worked and I carried Ryan to full term.  But at what cost???

Article upon article states the side effects of this drug for women and their unborn babies.  Some children have genetic factors that make them more vulnerable to the affects of Terbutaline, and in turn, the Terbutaline makes the baby's brain more vulnerable to toxins.  In fact, I've heard there are federal warnings against giving this drug as a way to stop preterm labor.  If you want to read more about this, simply google "terbutaline and autism".  You can find all sorts of articles about studies performed, and also links to numerous blogs and comments to those blogs about real stories from women who were given terbutiline, and gave birth to a baby who was later diagnosed with an Autism Spectrum Disorder.

It's not something that can be changed, so I'm not sure why I'm so obsessed with finding an answer to the question, "Why?"  But this can't all be for nothing.  With Ryan I was a naive, trusting, uninformed, and scared first-time parent.  I don't think they even asked me; I was just told this is what needed to be done.  Scared that he would be born too early with complications, we let them do whatever needed to be done.  If I were to go into preterm labor with this new child, what would I do?  Would I agree to an injection of Terbutaline?  I now know I would think twice and ask what other options are available!


Changing gears, I want to share with you our experience at Ryan's Open House this week.

 
All day he was excited with anticipation to take of us to his classroom and give us a tour of the building.  On the way to his classroom he stopped at the speech classroom to introduce us to his speech therapist.  He was happy to show us his work hanging on the wall and his seat at his new table.  He immediately ran up to and hugged his teacher aide when she arrived.  After his classroom Ryan walked us to the library, where he gave us the rules that we weren't allowed to touch any of the books during Open House night, just when they visit during Kindergarten class.  Next he took us to the gym.  He was most excited about showing us this area.  We walked around the perimeter and there were posters hung along the wall that the students in the building drew related to healthy habits.  When we arrived at the section of Kindergarten posters, Phil immediately identified Ryan's.  His half circle for a head stick figure stood out!  For those that have been to our house, and have seen Ryan's drawings hanging around, you know exactly what I'm talking about!  Maybe you even noticed it in the picture of the Open House invitation above, or in the tooth fairy dream picture I posted last week.  Here are the pictures we took in the gym:

Some of the posters hanging on the wall.  Can you pick out Ryan's?

There's his signature stick figure jumping rope!

DC