4/2/13 World Autism Awareness Day

In 2007, the United Nations declared April 2nd as World Autism Awareness Day.  People around the globe celebrate this day with hosting fundraising events, lighting their homes using blue lights, and wearing blue clothing, to name a few.  Approximately 7000 landmarks and buildings will shine blue lights onto their facades.  I wonder how many people will see the top of the Empire State Building shining blue tonight and know what it is for or possibly just assume it is in honor of our New York baseball teams for the start of a new season.

My own immediate and extended family wore blue and our blue light bulbs are in ready to be flicked on.  I asked my students to wear blue today and about 70 of them did.  We didn't do any fundraising (we save that for May near my son's birthday), but we certainly covered the awareness part.

And how about the celebration?  April 2nd is also supposed to be a day to celebrate Autism and the uniqueness it brings to individuals and their families. We are blessed to have a family that supports us and "celebrates" my son everyday.  Through our ups and downs there is ALWAYS someone there.  For the families without the support that we are so lucky to have, the awareness and celebrations are so important to show them that someone cares so that they don't lose hope.  Losing hope is easy to do when you are frustrated and losing control.  Well, someone is listening.  Someone is doing something.  People do care and want to help.

When my son, Ryan, was diagnosed with Autism three years ago, my brother asked me, "Autism, what is that?"  My family was unfamiliar with the diagnosis and we had a lot to learn.  This morning my brother sent me pictures of Radio City Music Hall.  He was given permission to light the inside blue and the entire theater shone blue all day.  RCMH has participated in World Autism Awareness Day in the past by shining blue lights outside, but this is the first year for their famous indoor ceiling to be lit blue. What a great thing to do in honor of not just my Ryan, but for all of those with Autism, whom we celebrate today and everyday!

DC

This entry of the blog was featured on a friend's blog.  Check out her website: http://beyondthecrib.com/ and the link she posted after asking me to be a guest blogger on her site: http://beyondthecrib.com/content/guest-post-world-autism-awareness-day

Week 153

We began the week excited to have Ryan's appointment with the psychiatrist.  Unfortunately, the morning of the appointment, the receptionist called to cancel the appointment.  It was the morning following the snow/ice storm.  Many schools were on a 2 hour delay.  I was home with the kids, about to pack them into the car to take them to daycare so that I could head to work and the phone rang.  I was so annoyed.  I told the receptionist that the roads were fine and the buses were already out there picking up the high school kids in my neighborhood.  How could the doctor cancel an appointment for the afternoon when she had 5 hours to make her way into the office?  They told me to call back and reschedule.  Yeah right!  So with the psychiatrist appointment cancelled, and the psychologist appointment cancelled just a few days before that, we were feeling pretty defeated.  In the meantime, a family friend had recommended another doctor in Newburgh who comes highly recommended.  He is on vacation but said that he would be willing to meet with Ryan when he returns.  I've left a message and am hoping to hear back very soon.


Among the many recommendations we received, one was for the Autism Program at Yale.  They have a Child Study Center that is considered one of the best in the country, where over a two day period a team of specialists interview us and work with Ryan to determine his strengths and weaknesses.  At the end of the two days we are provided with a pile of reports that we can use to help Ryan get the help he needs in school and within our community.  I spent time researching the program this week and speaking with an individual from the Yale Child Study Office.  We were able to make an appointment for Ryan during the first week in April.  But after further consideration, Phil and I cancelled the appointment.  With all of the other avenues we are pursuing right now, we didn't want to jump into this and overwhelm Ryan.  It is a lot of money, out-of-pocket, to spend ($5500) for reports similar to what we may already receive from the professionals currently working with Ryan.  I'm sure it is the name "Yale" at the top of the reports that may open a few more doors, but at the moment we seem to already be inundated with information.  It is not the lack of information, it is "What do we do now with this information?" that has us stumped.  The Yale program is something that we can wait a few months for and see if it is necessary at that time.  This will give us more time to save up the $5500 since much of our current resources we are currently investing in appointments in the psychiatric field.  It is astonishing how many doctors in this field do not participate in insurance! 


Autism Program at Yale

Jack turned 8 months this week.  Here is a picture of Jack with Ryan and Julia.

Towards the end of the week Ryan had a huge meltdown that lasted about 20 minutes.  My parents and brother were here.  They said he was great all day and then something set him off and he couldn't control himself.  It happened just as I had returned home from work on Friday.  It was already a bad day as I had met with the Assistant Superintendent in the morning and found out that I was one of 67 teachers in my District being laid off.  As of right now I do not have a position for the 2013-2014 school year.  That may change depending upon the budget in May, but there are a lot of factors in play right now.  I can't believe after working for a district for 10 years that there have been so many cuts that I am at the bottom of the list on the chopping block.  How do you continue to run a decent education program with that many layoffs? After a rough day at work, walking in the door to Ryan crying and screaming and throwing his body around was just a lot to handle. 

And Ryan's skin is getting progressively worse.  He is obsessed with scratching it and he is so itchy it is further upsetting him.  We took him to the pediatrician and she gave us two topical prescription medications; she said his eczema and his scratching, has caused an infection on the skin.  After just one day of use we already noticed a difference and Ryan said himself that he is less itchy.  Here is a picture of his scaly, scabby leg the night before we took him to the pediatrician.

On Palm Sunday we did a little early celebration of Easter with our families.  The kids had an Easter egg hunt outside and had a lot of fun playing all together.

Don't forget that April 2nd is World Autism Awareness Day and homes and buildings around the world will be lighting it up blue. Get those light bulbs ready! Our light bulbs are ready to go for the evening of 4/1!  And please remember to wear blue on 4/2! 

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

Week 101

Some reminders about upcoming events: April is Autism Awareness month.  And April 2nd is World Autism Awareness Day.  In honor of this event, many buildings around the globe will light their buildings up blue on the evening of April 1st.  We'll certainly be lighting up our house blue!  Don't forget to do the same (they actually sell "Autism Speaks" blue light bulbs!) and on Monday, April 2nd, wear blue!  Also, we will again be participating in this year's Autism Speaks walk in White Plains on Sunday, June 3rd.  We're in the process of setting up our page to sign up to join our team or make a donation.  More information to follow about that.  But in the meantime, if you are interested in walking, please let me know so that I can keep you updated.  And we are also in the process of ordering additional Ryan Express shirts since last year's supply is just about depleted.  So if you would like to order one, please let us know. 

Happy Anniversary (a week early) Nonna and Papa!

 With all of this recent warm weather, Ryan and Julia have been enjoying themselves outside whether playing with each other, or with friends.  Unfortunately one evening we found a tick embedded in Ryan's scalp and he was extremely upset as Phil removed it.  He said he wasn't going to go outside anymore but thankfully that wasn't the case the rest of the week.

We went for our check up with the specialist and we will have to return in 4 weeks again.  Although the spots on the baby's heart increase the risk of a down syndrome baby, overall the risk was still on the low side and we didn't feel it was necessary to accept their offer to perform an amnio.  The doctor also discovered some bright spots on the bowels that they will continue to monitor.  Here is an updated ultrasound photo:

One of Ryan's homework assignments this week was to write two sentences, then draw a picture related to those sentences.  He fought me a bit to do the assignment but once he did, Ryan did a great job.

His sentences say: I was in bed.  I was dreaming about my tooth.

Ryan drew himself in bed, with a thought cloud above his head.  He is dreaming about the tooth fairy (in pink) handing him many different denominations of money.  Underneath himself and the money (it is difficult to read in the picture) he wrote "momy love".  I asked him what that said and he said, "mommy loves me".

He can be so creative and it is so amazing to sit there and watch him write and draw.  Once he gets into concentration mode he stays focused on the task at hand.  I am so proud of him!

DC

A Message from Uncle T

Blue was always my favorite color growing up.  Maybe it was because of the Hoot Rod or for the Mets and Rangers or the C-D Mustangs, but recently the color blue has an even more important meaning to me.  A little over a year ago I was asked by the Madison Square Garden Public Relations department if Radio City Music Hall would be able to participate in the annual “Light it up Blue” campaign for Autism Awareness.  I didn’t know too much about Autism but it seemed like an amazing joint effort which would include many famous landmark buildings around the world.  I went to work with our lighting department who would design and assemble a series of gelled lights to create a blue wall wash above the famous 6^th Avenue marquee of Radio City on Autism Awareness Day.  Soon after the initial request to participate in “Light it up Blue”, I learned that my Godson was diagnosed with Autism.  Suddenly I realized that the effort I was making for the many people affected by Autism was much closer to my heart than I originally thought.  I’m proud to say that for the past two years Radio City has continued its support of Autism Awareness and I am honored and proud to participate for my Godson Ryan. Happy Birthday.

Love always,

Uncle T

5/12/06

5/12/10

TF

Week 50

On Friday, April 1st we changed our white lightbulbs at our front door to blue. 

Phil was able to purchase blue light bulbs that actually came in an Autism Speaks Light it Up Blue package. I had never seen these before.

As the night of the Light It Up Blue campaign approached, I saw a commercial sponsored by Autism Speaks.  It's a public service announcement about Autism hitting closer and closer to home.  Here's the link:
Public Service Announcement

While prominent building across the world participated in this campaign, I am sad to report that the White House was not one of them.  Please read this letter below written by a mom of an autistic child.  It is well written and it triggered people from all over to gather on Pennsylvania Avenue with signs, but to no avail. 
Letter to the President

Ryan received good reports most of the week.  He was excited for us to read his report in his notebook on the good days and that would be the first thing he mentioned to us when we picked him up from Noah's Ark.  On the bad days, he ignored the subject altogether.  We experienced some of his rough behavior towards the end of the week and the weekend.  He became stubborn several times and did a lot of arguing with us and Julia.  But he also had some good moments and was loving with Julia and his cousin, Amelia. 

To get an idea of how big Ryan actually is, Amelia, in the center, is almost 2 years older than Ryan.

My brother made Ryan a deal that if he continues to get good reports he will buy him the Sodor Suspension Bridge for his Thomas the Train set for his birthday.  Ryan has been talking about this particular bridge for months.  They shook on it.  Of course just minutes later Ryan had a meltdown, followed by several other meltdowns throughout the night.  But several times throughout the weekend Ryan talked to us about getting good reports so that Uncle T buys him the Sodor "extension" bridge.  One time we caught him on video:

Ryan and Julia were in an advertisement in the Mahopac News newspaper, March 24th edition.  If you have the paper, the ad for Noah's Ark is on page 29.  Here is a link to the ad:  Ryan and Julia are in the newspaper!
Ryan's skin has been having a severe rough spot ever since we returned from California.  We stopped all powder supplements to see if we can get his smooth skin back.  Most of the redness and puffiness has subsided, but the skin is still rough like sandpaper.  Here's a picture of his legs back in the beginning of the week:

We are at a loss and feel so bad that we can't fix this for him.  It is especially upsetting when we have to use an alcohol wipe to clean an area for his injection every other night.  It burns him and he begs us to blow on his skin while we wipe it.  There are sections of this "rash" on the front of his legs, back, stomach, and arms, but those sections are not as severe as the back of his legs and bum-bum.  Ryan has been experiencing skin issues like this for years now and while the changes in his diet and medicines reverse the rash for a little while, it never lasts for more than a few weeks.  I'm beginning to think that this is his chemical make up and it will be something we (and he) will always have to deal with. 
On the food front, I made Ryan a GFCF egg free lasagna.  The noodles are made by Orgran and were quite tasty.  Ryan was off and on about eating it.  I don't think it was the noodles as much as the Soy Mozzarella Cheese that I used that turned him off a bit.  I think he is not used to eating cheese that he dislikes the texture.  Here are some pictures of the tray after I put it together, once it came out of the oven, and Ryan trying it.

As for the new pizza place we tried out, there was no mistaking that Ryan enjoyed their Gluten Free pizza!  I did not put the soy cheese on it, but instead asked the pizzeria to make it with pepperoni on top, one of Ryan's favorites!  We tried out a new place in Fishkill called J&J's Pizza Town.  It is located near Nature's Pantry on Route 52, which we go to often, so it is convenient.  They made a personal size pizza and Ryan ate most of it in one sitting!  Looks yummy, doesn't it?

We heard back from a few people about joining us for the Autism Speaks walk on June 5th.  Please let us know if you are interested.  And I need to get on the ball about ordering some more shirts so that I have them in time for Ryan's birthday.  For the 100 or so people who bought shirts last year, please mark your calendar to wear it on May 12th, Ryan's birthday.  If you are in need of a new shirt or want to order one for the first time, please let us know.  They are $10 and proceeds go towards supporting children with Autism.  I can order a variety of adult and children sizes.  Here's a picture of the Ryan Express team shirt:

On a positive note, Ryan has been great about his B12 injections.  In fact, about 2 weeks ago I gave it to him without first putting the numbing cream on, and he handled it exactly as if the cream had been there.  Not using the cream makes the process much easier since we don't have to put on the cream and wait an hour to give him the injection.  Cutting out that step has cut out the stress involved with timing everything.  So we are happy to report that we have been skipping that step and Ryan is doing a great job. 

And to end on a super positive note, Ryan received his first haircut at a salon today!  For four years he has only let me or my mom cut his hair, and even then it had to be under certain conditions and only when he agreed to it.  And until recently he wouldn't let us use a buzzer near his head.  So going to the salon and letting them use not just the big buzzer, but also the little noisy buzzer, is quite the accomplishment!  Here are some pictures of his experience. 

Before

Manages to squeeze out a smile; he was being so brave!

Not smiling!  He did not like when she sprayed him with the water bottle.  But he remained calm and didn't say a word.



Tolerating the small noisy buzzer to go around the edges.

After

First words out of his mouth when we got in the car:  "I want to go home and show Helen." (Helen is our cat.)
DC

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