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

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

Week 100

One hundred weeks...WOW!

Ryan's bottom tooth has been loose for about a week now.  I picked him up after school and he was ecstatic to tell me that his tooth fell out.  He was equally excited to leave it under his pillow for the tooth fairy and he commented, "I hope she brings me a coin or dollar because she lives in the sky and has a lot of money." 


















The next morning Ryan was thrilled when he found money under his pillow instead of his tooth.  Here's the video of his reaction:
A Visit From The Tooth Fairy

One of my former students asked me if she could interview me about Ryan, so that she could write an article about him and Autism in her school's newspaper.  She recently sent me her write up in a Word Doc and gave me permission to share it on our blog.  Unfortunately I haven't figured out how to get it embedded into the blog yet.  I'll keep trying some different things because I would like you all to read it; she did a great job!

This week I went for my Anatomy scan, and let me first say, we did not find out the sex of the baby and do not plan to.  In fact, we're not going to settle on a name until the end as well, and will keep that a surprise too.  Here are a few photos from the ultrasound:

 I need to go see a specialist tomorrow afternoon because the ultrasound showed some spots developing on the baby's heart.  Please say a prayer!

What a great St. Patrick's Day weekend.  The weather was gorgeous and we were super productive.  The kids stayed outside all afternoon Saturday playing and helping us clean the cars and clean out the garage.  They even spent some time jumping.

We ended Saturday with my brother's family coming over for a corned beef dinner.  Here's a photo of our little Irish girl:

This morning I walked into Ryan's room and to my surprise this is what I found:

Without asking him to, Ryan made his bed this morning.  This was a first!  He wasn't even looking for recognition because he didn't come to tell me that he did it.  But when I saw it on my own and praised him for it, he was proud!

Another gorgeous weather day on Sunday with a visit from friends of ours as well as Grandma.  

The kids enjoyed their bubbles from grandma.  They continued to play with them the rest of the day!

DC

Week 99

Last weekend I came down with a stomach bug and we found ourselves in the Birthing Center at our hospital for most of Saturday.  An ultrasound was done to check on the baby, and all looked great!  Ryan was with us for the first hour until we were able to get help from someone to watch the kids.  The nurse said he looked scared.  He may have been a little scared seeing me in a hospital bed.  He walked over to me and rubbed my leg.  He also wanted to know if he was going to watch the doctor take the baby out!  Here's an updated ultrasound picture:

The ultrasound tech at my recent checkup printed a picture out in triplicate so that Ryan and Julia could have their own copy.  Ryan took his picture and held it up to my stomach and said, "Yup, it's the same size as your belly!"  Both kids were so excited to tape the picture to a wall in their room.  Ryan put it on the wall next to the picture he drew of Helen.

During the weekend we headed over to a house on the next street over from ours for an impromptu outdoor play date with their family.  Ryan goes to Kindergarten with their little boy.  The boy and his three sisters were riding bikes.  It seemed like Ryan felt left out that they could all ride without training wheels and he couldn't.  But he used one of their scooters and after getting the hang of it, he did a good job.  It is a rare occasion for Ryan to be able to remain outside for over an hour without having a meltdown.  Hence the reason we have been unable to teach him how to ride a bike.  Even with his bike with training wheels, as soon as he has difficulty getting over a bump, or Julia peddles faster than him, or he has trouble steering the handle bars, he takes off his helmet and goes inside full of disgust.   He gives up very easily and gets frustrated.  I don't know when most kids learn how to ride a bike without training wheels.  I guess it comes to certain kids at certain ages.  I just worry that Ryan will be behind with many tasks like these.  We are fine with him going at his own pace, we just don't want him to feel left out and allow the part of the disability that makes him get frustrated easily, to prevent him from doing something he wants to do. 

Last week I wrote about Olivia.  This week was her wake.  It was one of the most difficult things I've had to do; I can't imagine what her family is going through.  The room was filled with enlarged pictures of her, photo collages, flowers, her toys scattered about, and a video montage playing in the corner.  Her casket was white, and she was dressed in white.  She looked like the little angel that she is.  There was some comfort seeing her at peace, but sadness that she had to suffer the way she did.  God bless her family that gave her best life she could have had and showered her with love every moment!  It amazes me at how much sadness there is in this world and the strength of the people who survive through it.

DC 

Week 98

Please click on this link and listen to this little girl sing about heroes.
9 year old girl with Autism sings a song about Heroes

Olivia was a hero.  Remember Olivia?  Back in 2010 we dedicated a blog entry to Olivia.  Here is the link to it so that you can reconnect with Olivia's story: Dedication to Olivia

Olivia turned 3 two days ago.  This is a milestone that she was unlikely to achieve, but she did it!  Today was supposed to be her big birthday celebration.  Just moments before arriving at her house for the party we heard the news that Olivia passed away.  All I know is that she was peaceful, and that she got to wear her party dress this morning and she looked beautiful.  Words cannot express the sympathy we have for her family and the love we feel in our hearts.  What a special little girl, now God's angel!

May you rest in peace, sweet Olivia!

DC

Week 97

To get our minds off of the passing of Helen, we took the kids for an overnight visit at nonna's and papa's house.  Ryan told them all about us putting Helen in a hole in the backyard.  It was good to get away and it did provide some distraction, but it was difficult to forget and put aside the feelings of sadness.

Ryan enjoyed climbing into my uncle's tree house.

 Ryan also made his own GFCF pepperoni pizza.  So did Julia.  Except she wouldn't eat hers!

On the ride home it was a clear night and the stars were shining bright.  I told the kids to look out their windows to see the stars. Julia said that you can make a wish on a star, and Ryan replied, "I wish Helen wasn't in a hole anymore."  Ryan has been so sensitive through this entire experience.  He's been fixated on things before, but there is something comforting knowing that Ryan has this sensitive, caring side to him that reminds me of myself.


There are also all of these feelings of guilt.  I feel so bad that I was not brave enough to remain in the room during her last moments.  Phil was brave enough to be there for me, but it should have been me. She was probably scared, and I should have been there holding her. I should have been the one to soothe her; I should have been the last thing she saw and my love should have been the last thing she felt. 

This week we received our first pet sympathy card.  It was from Helen's vet.  Inside was a little card with the poem The Rainbow Bridge.  For those that may not have read it before, I thought I would share it here:

The Rainbow Bridge
Inspired by a Norse Legend

By the edge of a wood, at the foot of a hill,
is a lush, green meadow where time stands still.
Where the friends of man and woman do run,
when their time on earth is over and done.

For here, between this world and the next,
is a place where each beloved creature finds rest. 
On this golden land, they wait and they play,
till the Rainbow Bridge they cross over one day.

No more do they suffer, in pain or in sadness,
for here they are whole, their lives filled with gladness.
Their limbs are restored, their health renewed,
their bodies have healed, with strength imbued.

They romp through the grass, without even a care,
until one day they stop, and sniff at the air.
All ears prick forward, eyes dart front and back,
then all of a sudden, one breaks from the pack.

For just at that instant, their eyes have met;
Together again, both person and pet.
So they run to each other, these friends from long past,
the time of their parting is over at last.

The sadness they felt while they were apart,
has turned into joy once more in each heart.
They embrace with a love that will last forever,
and then, side-by-side,
they cross over... together.

The next day we received another sympathy card from our friend, Bridget.  She also included something in the card.  It was the story of The Rainbow Bridge.  Very similar to the poem, just in a story form.  I was lucky enough to find a heart shaped stone on the Internet, with the story inscribed on it, and we ordered it for Helen's burial spot.  We are even more lucky to have such caring and loving people in our lives to lend us support when we need it.  Whether it was a card, a phone call, an email, a visit, or a prayer said, a big thank you from the bottom of our hearts to everyone who has helped us through this difficult time!

DC

Week 96- Helen

Helen, 4/14/02 - 2/18/12

When is it okay to talk to your children about death?  We were faced with that decision today and we chose to talk open and honestly with the kids.  Our cat, Helen, has been very sick and at her visit to the vet today it was discovered that she had kidney disease.  She was in the final stages and her kidneys were failing.  Her red blood cell counts were only at 9% and she would need a blood transfusion before she could be given any medication.  Even then, there would be a small chance that the medicine would do anything at all, given how far along the disease had progressed.  And even if the medicine did help, the disease is not reversible.  We could manage her pain at home but she wouldn't be her usual self, and it wouldn't be long before her kidneys failed altogether.  We had to make a decision, and after seeing her suffer at home all week, we just couldn't stand the thought that her suffering would continue to get worse. 

The four of us went back to the hospital to say our goodbyes before she was put to sleep.  We decided to take the kids with us since Helen has been a part of their lives since they were born.  Both were very upset, but especially Ryan.  We held her and talked to her and then the kids and I waited in the waiting room. 

 
Phil was so brave.  He stayed in the room with Helen until the end.  At home, we prepared a burial spot.  Ryan wanted to be the one to put the bag into the hole in the ground.  He asked a lot of questions, the same ones over and over.  He didn't understand why we had to put Helen there, and he wanted to know when she was coming back. Ryan was upset that we weren't going to have a pet anymore, and he also said he was going to go out to the yard one day and bring her back inside.  Uh oh!

Ryan has broke out into tears numerous times today.  I encouraged him to draw a picture to hang in his room.  Here is the picture of himself and Helen.

I am devastated over this loss and I can't imagine life without Helen.  Everyday there will be something that reminds me of her, I just know it.  Helen would have turned 10 this April.  I feel guilty that her life ended so early.  Being an indoor cat I thought she would be in my life for many more years.  I wish we had known about her disease sooner so that it could have been treated before it caused her kidneys to fail.  The vet said this could have developed as far back as 12 months ago.  Helen certainly did a great job of hiding her symptoms and it was only during the past week that we really knew something serious was wrong with her.

Oh my beloved Helen, I will never forget what an awesome companion you were to me.  You were always by my side and I will miss you dearly. Love, mommy

DC

Weeks 94 and 95

Ryan continues to be excited about the new baby.  He gives my belly a kiss each day and talks to the baby.

We received Ryan's 2nd quarter report card. 

Elementary report cards are scored on a 1 - 4 scale: 1 - Does not meet standards, 2- Developing Skills to meet standards, 3 - Meets the standards, and 4 - Meets the standards with distinction.  Ryan scored 2's and 3's.  The only areas that he went down in were Handwriting (a 3 to a 2), Demonstrates Application of Mathematical Concepts (3 to a 2).  The comments from his teacher was no surprise if you have ever spent time with Ryan.  They were requires significant teacher support and assistance, struggles with using time wisely, and a pleasure to have in class.  His Physical education teacher wrote that Ryan requires significant teacher support and assistance, needs to improve his gross motor skills, and that he needs to practice his ball skills.  Overall it was a good report card and we are very proud of Ryan and how far he has come.


A Two Minute, Feel Good Video...Check it out.

Ryan with his February school project

Ryan enjoying an afternoon on the playground with some friends.

Ryan has been asking for cake pops. I wasn't sure if they would come out okay with a GFCF mix so I baked them with regular cake mix and let Ryan cheat.  He did really well.  Usually it is evident when he goes off of his diet.  But he enjoyed the cake pops so much that his behavior was extra good for a couple of days so that he would earn the privilege to eat a cake pop for dessert.   I do want to attempt making them with a GFCF recipe and see if they form and hold correctly.

Enjoying a special treat of cake pops

Anyone looking for some chocolatey recipes for Valentine's Day for those on a gluten free diet?  Check out these two websites.  They have some yummy recipes!
Gluten Free Goddess

multiplydelicious.com

On 2/12 we had an early birthday celebration with family for my birthday.  It was nice to celebrate, but I also took a moment to reflect on how much has gone on this past year.  Today was the due date of the baby girl we lost back in June.  Time really does go by fast, and we're happy to have so many good things to look forward to in 2012. Here are some pictures of the celebration:

DC