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