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

One year ago today...

Here is the entry from my diary, written on March 16, 2010:

The statistics say that every 20 minutes, a child is diagnosed with Autism.  At 3 pm today it was our turn.  Ryan was diagnosed with high-functioning Autism.  While this is one of the better diagnoses on the spectrum, it was not an easy thing to hear.  His life as he knows it, and as we know it, will never be the same. 


Phil and I noticed there was something different about Ryan, something special and unique, and we knew it needed to be looked at.  But I thought maybe I would be told I was wrong, and it was just a phase. 


I feel numb thinking about this and what the days ahead will bring.  As his mother I just want him to be happy.  I want the best for him.  I don't want him to miss out on anything, and hope he lives his life filled with laughter and love.

A year ago we felt weak and defeated but we've learned that you don't know how strong you are until being strong is the only choice you have.  Phil and I will never stop fighting this fight.

DC

Week 47

This was a tough week for us with everyone being sick. Ryan was still sick most of the week. We kept both Ryan and Julia home on Monday and tried to send them in on Tuesday.  Half way through the day their daycare called to tell us that Julia was now sick and Dawn went to bring her home.  When I went to pick up Ryan later that afternoon he was standing on one of the outside play ground pieces and asked me "if he could go home now".  Normally we have to drag him off the playground but he looked so sick just standing there we kept him home the next two days.  It was a total team effort between Nonna and Grandma coming down and watching both of them the rest of the week. On Friday Ryan was well enough to go to school but Julia was still sick and went up to Nonna and Papa's house. Everyone is starting to get better but it was a long illness! 

This week we were supposed to drive up to Dr. Bock on Tuesday. However, with everyone still being sick this was not a possibility. So we set up a phone appointment.  Dr. Bock was pleased with Ryan's progress and was glad that he did well on the trip to Pittsburgh and Florida. He is going to write us a letter in support of Ryan on the GF/CF diet so we can add it to his IEP at his annual review this May. He also put Ryan on a new supplement called Phosphatidylcholine concentrate.  This is to help with developing and repairing neurons in the brain and to help with the break down of fatty acids.  He is still unsure as to why Ryan's eczema comes back so he is going to send us back for more blood work to look at fatty acid levels, vitamin D, iron, and minerals. 

The kids seem to be back to their old selves again.  Here they are dancing together...

We did not mention in last week's blog that we registered Ryan for Kindergarten! However, you would think that this would be an easy thing but of course it does come with it's transportation dilemma. The form for requesting transportation is due by April 1st. However, Ryan's annual review is not until the end of May. We will not know if Ryan is in morning, afternoon, or in the all day special education kindergarten (yes, our school district still has half day) until the middle of August. Our school district's response is to fill out the form letting them know where to pick him up and drop him off for all three scenario's.  However, how can we go to a day care facility and ask them for a spot if we do not know what we need? While I am sure that the transportation will work out it just causes us unnecessary stress and this always seems to be the one area that we get the biggest headaches with when dealing with Ryan and his programs.

Ryan came home with a clay dinosaur that he made at PARC.  He was quite proud of his creation!

PC

Week 46

We don't have much to report this week except that Ryan hasn't been feeling well for a few days.  We received a call from his daycare on Friday morning stating that he wasn't feeling well so they didn't send him on the bus to PARC.  Instead, Phil picked him up (and Julia as well who seemed a little mushy) and brought them home.  They both spent the last few days with high fevers up to 104.1.  Ryan was so weak on Saturday that we had to carry him from room to room.  Although he complained of stomach aches, he didn't seem to show any signs of a stomach virus.  The quick strept test at the doctor came back negative for both kids, but Julia's urine showed a high concentration of white blood cells so she has an infection and they sent it out to the lab to get analyzed.  Julia is on an antibiotic but for now the pediatrician feels his is just viral and it needs to pass through his body.  We're hoping to hear the lab results tomorrow.

He looked so sad and weak and his voice is so scratchy and altered that I didn't want to post any pictures or videos this week but we're hoping he'll be back to his usual self soon.  In fact, as I write this, his temperature is around 100 and he's in pretty good spirits, about to head up to bed. 

I do have one funny story to share.  Phil came home from the store with a black suit that he purchased for his brother's wedding.  Ryan asked to see it and said, "Daddy, it's all black.  You can't wear that at night cause nobody will see you and they will bump into you."  We thought it was so cute!  I can't wait to hear what he says when he goes to get fitted for a tuxedo this summer for a wedding that he is in this October!

Ryan has an appointment with Dr. Bock on Tuesday so we'll be sure to report about that in next weekend's blog.  Have a great week everyone!  And stay healthy because there is a lot of nasty viruses going around!

DC