Week 53

Spring Break Week!  Lots to share, so here it goes...

Let's start off with a video of Ryan and Julia dancing on a rainy spring break day.  While Ryan provides a good chuckle as he barks to "Who Let the Dogs Out?", it is difficult to ignore Julia's dance moves!

Phil's mom came over for lunch this week and we showed her the videos of the kids dancing.  They then felt the need to get back into their "dancing costumes" to show grandma.  Here's a picture of the kids being silly with grandma.

For over a month the boxes from Geneva Diagnostics Labs have been sitting in our dining room.  It is time for Ryan to get more blood work done before his next appointment with Dr. Bock in May.  We waited until this week because we're all home from school and it is the best opportunity to get him to St. Francis Hospital first thing in the morning to get the blood drawn.  He has to fast for 12 hours beforehand so Phil got him up early on Wednesday morning and drove him over to the hospital.  And of course insurance doesn't cover any of these tests.

 I get a knot in my stomach every time I look at those boxes.  I am so thankful that Phil took him because I was a wreck thinking about it and I know it would have been difficult for me to take him and put him through that.  And if he needed to be restrained he has become too strong for me to do it.  The doctor ordered level checks for certain things but not everything like last time but they still needed to draw about 15 vials of blood.  It was overwhelming to go through the boxes to complete the paperwork and prep the ice packs and vials, but the worst part was thinking of Ryan going through it.  Ryan and Phil were gone for over 2 hours.  Ryan needed to be restrained a bit and they were just able to get through the last vial before they needed to stop because Ryan was starting to turn pale.  That is a lot of blood for a little kid in one sitting!  Thank goodness he doesn't need to go back and they got it all done.  I made him a special pancake and bacon breakfast for him upon his return.  I was so proud of him!

Ryan showing me his boo boo.

Here is a video of Ryan eating his special breakfast:

We've established our team, The Ryan Express, for the Autism Speaks Walk in June. We hope to get a great turn out of walkers like last year.  The walk takes place on Sunday, June 5th at the New York-Presbyterian Hospital in White Plains.  Registration begins at 9am and the walk begins at 11am.   Please click this link to join our team.  The Ryan Express Team Page.  And don't forget to let me know if you need a t-shirt!

After our recent posted picture of Ryan's skin I heard from a colleague at work about a product called almond oil.  She suggested we try it and we purchased it at Nature's Pantry that week.  We've been rubbing it on Ryan's legs every other night after his bath.  His skin is noticeably smoother.  The rash still remains but it seems more contained and it is a different kind of rash.  It is not so puffy; it's more like red scabs and pimples. He still scratches which is causing the scabs, but I'm going to increase the frequency of applying the oil and see if that helps.  We're hoping to post a new and improved picture within a couple of weeks!

Ryan's B-12 injections, aka "red medicine", is going fairly well.  He still stalls a bit, but we no longer need to put the cream on first, which saves a lot of time.  In order to get it done without too much stalling we play a game with him.  If I'm giving him the injection I secretly tell him that we have to go in the other room and do it quickly so we can surprise daddy.  He likes to surprise us and show us the used syringe, and we in turn get all excited and give him hugs.  He becomes very proud of his accomplishment.  I'll have to get it on video one day because it really is so cute!  But I did get a video one night of him talking about his red medicine and cream.

A note about Ryan's diet... he ate tuna fish and liked it!  With all of the negativity going around about the mercury in fish this isn't something we would feed him all of the time, but it was nice to be able to give him something different.  And I happened to have a GFCF and egg free condiment similar to mayonnaise, called Vegenaise, that I mixed with the tuna. 

This week we watched an HBO Documentary called A Mother's Courage: Talking back to Autism.  I had missed it the last time it was on in the fall but once I heard the date it was airing this spring we set our DVR to record it.  It was an amazing story and if you ever see it scheduled on HBO you should view it.  Or we saved it on our DVR, so come on over!  This documentary was touching, enlightening, and educational.  There are so many things I can share about it, but I won't and hope that you see it yourself one day!  I'll simply say that we feel so blessed that Ryan is able to communicate with us.  I highly recommend families with Autistic children watch this documentary.  Here's a sneak peak:  View the Trailer
Ironically, Phil came across a video this week about an Autistic girl named Carly and it reminds me of the above mentioned documentary.  This is a 9 minute video, but well worth watching the entire thing.  It is so inspiring for families with nonverbal children!  Carly's Voice

One night Ryan started talking to me about bringing in pennies in to school because Ms. Rose (one of his teachers at PARC) said they needed to fill the whole jar with pennies.  I vaguely remember reading about a collection for Japan in one of the newsletters and forgot to send Ryan in with some coins.  Here is Ryan talking about the collection.  The next day Ryan brought in a bag of coins to add to the jar at school.

We're off to search for some hidden plastic eggs.  We'll post some egg hunt pictures next week!  Happy Easter!
DC

Week 51

This weekend Ryan attended my school's musical production of Beauty and the Beast.  He remained attentive during the show and enjoyed it.  He said that his favorite part was when the beast was fighting with the prince (Gaston) and when Belle and the Beast danced.  He seemed overwhelmed before and after the show while in the auditorium with so many people.  I tried introducing him to a few people but he wouldn't speak with anyone and would barely make eye contact.

Ryan's behavior at school this week was fairly good after a rough start on Monday.  His teacher called Phil in the afternoon to tell them about an incident at school.  Ryan was having a tough time listening and following directions for a good part of the day.  And then during afternoon snack Ryan was shoving several pretzels at a time into his mouth.  When his teacher asked him to stop he told her that she can't tell him how to eat and he was going to call the police on her and they would bring her to jail.  Needless to say we had a lengthy conversation with Ryan that evening.  I warned Ryan that he wouldn't be getting the Sodor Suspension Bridge for his birthday if he doesn't get good reports at school.  Ryan has been talking about this particular bridge for many months now and he would love to add it to his Thomas the Train collection.  My brother agreed to purchase it for him for his birthday and Ryan promised him that he would get good reports at school.  Ryan and I spoke about what he will need to do to make sure he gets a good report each day.  I was pleasantly surprised to hear Ryan come up with the following rules: Speak nicely to teachers.  Play nicely with friends.  Eat one pretzel at a time.  No cheating during games.  I asked Ryan to add "Help clean up" to the list.  While impressed that Ryan was able to recognize and communicate with us about appropriate behavior, displaying that appropriate behavior on a consistent basis is another story. 


Ryan can also display a funny side.  I want to share this exchange I recently had with him...


Ryan takes fake money out of his wallet, shows it to me, and starts the following conversation...
Ryan: I have $50.
Me: Where did you get $50 from?
Ryan: The $50 store!

On another note, Ryan's skin has settled down a bit.  It isn't as red and rashy as it has been recently, but it is still rough rather than smooth.  We were given a suggestion to try something on his skin called Almond Oil.  Phil purchased it this weekend at Nature's Pantry and we are going to try it on a small part of his body after this evening's bath.  

It's been nice dealing with Ryan's hair all week now that he has had a haircut.  It is more manageable and he liked the attention he received all week about his new haircut and his visit to the barber shop.

Save the date... Sunday, June 5th is the Autism Speaks walk.  We will be officially signing up our team online this week and we will share the link so that people can join the team or make a donation.  


Have a good week everyone!


DC