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

April 17th, Our One Year Blog Anniversary

On Saturday, April 17th, 2010, we began this blog. It marked the day we made our first attempt at switching Ryan to a GFCF diet. I went back to reread our first few entries and I had to chuckle at us thinking that we would keep Ryan on this diet for about 3-6 months. Now look at us... one year and going strong! And so much has changed since then.


We were so frustrated back then and this diet was so new to us. We relied on other people as the experts and we were in awe at how much these folks knew. Never did I think we would one day become the experts and have families rely on us. Over the past several months we've had people ask us for advice regarding food, doctors, books, recipes, etc. So many people helped us that it feels good to pay it forward. I'd like to share one of those pay if forward stories with you.

About 3 months ago a colleague of mine entered my room after school and the first words out of her mouth were, "I've been told to come and talk to you." She looked tired and frustrated and I knew all too well what she was feeling. She went on to explain that her son has a severe milk allergy and after many frustrating months of rashes, speech issues, and behavioral issues, they have found the root of the problem. Dairy. So she now needed to change his diet. We spent time over the next several days talking about food substitutes, where to shop, which brands tasted the best, food costs, behavioral changes, and ultimately how changing to a gluten free diet may also help. I shared books and recipes with her, and over the next couple of weeks she came in to my room to report lots of exciting advances. Not only was her son receptive to many of the changes, but her other kids as well. They were making a lifestyle change as a family, and everyone was feeling good. In addition, it was getting easier and easier, (just as I had promised her that it would) to shop for these substitutes. To top it off, she began receiving good reports from her son's school with teachers writing that they have seen positive changes in him. Not all of these people knew about the change in his diet; she purposely didn't share the news just to see if anyone noticed a different. And they certainly did! This encouraged her even more! Then recently she received a report from her son's speech teacher that he is doing so well that he will most likely test out of the program; she proudly forwarded that email to me. To protect confidentiality I don't want to share all of the details of the message she received from the teacher but I do want to share with you part of the email she sent to me:

Hi Dawn,
Wanted to share my good news with you since you were so helpful in getting us to this point. I know we have far to go but it is all beginning to come together for my son. Please read the email from (*my son's*) teacher that I received today. Thank you so so much for your advice and positive motivation for me. It has meant so much.

So when did we become the "experts"? I have no idea. But I'm glad that we can pay it forward and help others. I look back to when she entered my room and I promised her that in just a couple of short months all of this would be behind her and she would feel totally comfortable with the changes she would need to make. I didn't believe it for myself a year ago, but a lot has changed in a year. For anyone considering how this diet might help their child, we encourage you to try it. Don't give up!

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

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