Week 28

Happy Halloween!

A lot happened this week with Halloween parties at school, my mom's birthday celebration, and so many language-based improvements with Ryan.

First, let me post a picture of the kids in their Halloween costumes.  For you Toy Story fans, Ryan and Julia made an adorable Buzz Light Year and Jesse.

We took them Trick-or-Treating to a few houses and they enjoyed themselves.  They had just as much fun answering the door at home and handing out candy to the visitors.

At his school Halloween party Ryan and his classmates visited other teacher's classrooms to "trick or treat".  His teachers tried to have available candy that Ryan is allowed to have but their were times where he received a piece of chocolate.  His teacher wrote me a note saying that Ryan told her he was going to bring the chocolate home to Julia.  Wow!  He's really understanding the whole diet thing we have going on.  I witnessed it first time at his daycare's Halloween party.  Parents had brought in baked goods and were walking around placing the goodies on the kids' plates.  Ryan politely declined cupcakes, brownies, and cookies.  When one mother tried placing a small muffin on his plate, he was unsure if he was allowed to have it, so he turned to me and asked me, and when I told him 'no' he turned to the mom and said he couldn't have it and that he was waiting for his special treats.  Six months ago I never would have believed it if I was told one day we'd get to this point.

I mentioned the improvement in Ryan's language.  There was a noticeable change over the past few days.  He played school with Julia and I and did a great job telling us stories and raising his hand to ask "the teacher" questions.  Phil and I got a good chuckle the other day.  Julia woke up before him and came into our room.  The sun wasn't up yet and she was complaining that she wanted us to get up to bring her downstairs.  Ryan entered the room and asked, "Why is Julia whining?"  We found his tone and comment to be extremely funny (and appropriate). There were several instances this week where Ryan's language was appropriate, his statements were detailed, and his pronunciation was great.

On Friday we celebrated my mom's birthday and we all found it entertaining to watch Ryan take charge of 'cake time'.  He set the table with plates, napkins, and forks. He then asked his Nonna how old she was; she told him 21 (ha!).  He went to the drawer, pulled out the 2 and the 1 candle, and put them on the cake.  At this point my mom felt awful for lying to him because he so innocently believed her, and why wouldn't he?  After placing the candles on the cake and told everyone to wait to start singing until he turned off the lights.  He sang with the rest of us, then he turned the lights on and removed the candles.  Ryan then proceeded to the kids table, sat down in his seat, and began eating the special cupcake that was waiting for him. Ryan also did a nice job during picture time!

DC

Week 27

This week we went to a book signing at the Mahopac Library to meet Jesse Saperstein.  He spoke for over an hour sharing stories about his life and what it is like living with Asperger's.  He has a great personality and his speech was insightful.  He's also a wonderful role model and it would be great to have him as a resource to meet with the kids in my school.  I know for me, and other parents there that day, it was inspirational.  He reinforced what we've been questioning all along... Ryan is going to be okay.  He will go on to graduate high school and college, and be able to accomplish things that he puts his mind to.  Because of his social awkwardness he will probably get bullied and made fun of, especially in his teenage years.  But when the time comes we will work through it.  Click here to go to Jesse's website.

One of the amazing things Jesse discussed was his 7 month hike of the Appalachian Trail (from Georgia to Maine) to raise money for the Joey DiPaolo Aids Foundation.  From this link you can reach Jesse's blog during his hike, and read more about the foundation.  http://www.hikeforaids.org/

We purchased two copies of his book, one to read and share with others who would like to read it, and another that I will put away for Ryan and let him read it when he's a teenager.  Jesse signed Ryan's book and wrote him a message.               

He also took a picture with Ryan and Julia.  At first Ryan was shy and didn't want to stand up next to Jesse.  So Jesse sat on the floor next to Ryan, and that made him smile just long enough for me to snap a shot.  Julia was her usual self when it comes to Ryan - excited to be included in something having to do with her big brother!

DC

Week 26

We seem to have hit a good stride with the injections.  We had 2 more injections this week without Ryan crying.  We even got him to take the injection with Dawn's parents watching on the web cam.  Not exactly what we got the web cam for but it worked.  I think we are over the crying part of the injections.

With all of his injections, oils, medicine, and supplements we noticed that his skin was starting to break out again.  When we missed a few days of the powders, we noticed that his skin was much better.  We are in the process of eliminating a supplement to see if it is the cause of the skin issue.  We think that we have narrowed it down to the last supplement that we gave him but we will have to wait and see how the rest of the week goes.  We will keep you updated. 

My cousin just had a baby and she invited us over for dinner this past weekend.  Of all the people in our family my cousin Melissa has had the most experience with this type of diet.  She has had some severe food allergies and is pretty good about being a Vegan.  She was very excited to cook gluten free pasta for us and Ryan was very excited to see that she had the same butter that he uses at home.  Both Ryan and Julia were great interacting with everyone and they had a great time with their new baby cousin.  We have a video with Ryan singing a lullaby to Luke.  This is a great example of how far Ryan has come on this journey. 

This past Friday evening we were driving home and like most people are exhausted.  So we decided to go out to eat.  We have Ryan's diet down to a science now and finding stuff that he can eat at restaurants has been come less stressful.  Granted as long as we are going to a sit down place; fast food is still out and we are better for it with the kids.  So this Friday we decided to treat the kids to Japanese food, hibachi style.  We have taken the kids in the past but it always scared Ryan with all of the banging and fire on the grill.  This time we went and since it was so early we were the only ones in the hibachi section.  This was the perfect way to get Ryan used to all the noise.  He remember from the last time and kept asking us what color hat the chef was going to be wearing:  red or white?  When the chef came out with the red hat he was so excited.  When he started the show Ryan loved it.  He still backed away from the fire but it was an appropriate reaction to the heat of the fire.  The chef did give us a warning that the fire was coming and we were able to prep the kids but they really enjoyed it.  They were very accommodating with the diet and put aside the chicken and noddles so no soy sauce would get on it.  Soy sauce is a huge wheat product.  It is the first ingredient on the label.  He spent the rest of the weekend imitating the chef.  Ryan said thank you every time the chef put the food on his plate and constantly gave the waitress the thumbs up as she came by to check on us. 

Below is an example of how Ryan is starting to get differences with people, especially his sister.  In the past Ryan was so rigid in his thinking that everyone had to like the same things.  Ryan would rule the TV and always have to be the one to pick the shows.  Now he has learned that he has to share, that Julia likes different things than he does, and it is okay for other people to like things that he does not like.  This understanding of how different people react is a huge step for us and we hope we are on right path with him. 
PC



Week 25

After weeks of forcing injections into Ryan with heartaches and tears, this week we reached a milestone.  On Friday night he took injection #17 without tears!  I gave him the injection all by myself.  Phil was doing something with Julia and I encouraged Ryan to do the injection and go surprise daddy.  Ryan adores Phil and of course wanted to surprise him and impress him.  So he turned over and let me do itOnce the medicine was in (when the burning part begins) his lips quivered and he wanted to cry, but he held back the tears.  We were SO PROUD of him and made a big deal about it.  He was proud of himself, as shown in this video (which I've watched at least 5 times a day since then!).



I am also very excited about meeting Jesse Saperstein on Saturday 10/23.  Jesse is a young man with Asperger's.  He lives in Pleasant Valley, NY and will be visiting Mahopac Library to share his life story and promote his book, which he will have for sale at the library for $10.  His book is called Atypical- Life with Asperger's in 20 1/3 Chapters.  The session begins at 2pm and ends at 3:30pm.  Registration is requested by calling the library or signing up online at the Mahopac Library website.  I want to bring Ryan with me but I'm not sure he'll sit for the 90 minutes and I don't want to take the chance that I'll miss part of it.  If anyone wants to join me, let me know.  Here's a link with more information about Jesse and his book:
Asperger’s from the Inside Out: Jesse Saperstein's Myth-Shattering New Book

In summary, Ryan had an excellent week at school and at home.  On Friday he was chosen by his teachers to take home the class teddy bear.  It came with a journal and Ryan brought Teddy around with him all weekend and we wrote about it in the journal. 

Over the weekend we took the kids with us for a quick bite to eat to celebrate our anniversary, and we went to a family dinner to celebrate my grandmother's birthday.  Between daycare and preschool he participated in several days of class and individual pictures.  Here's a couple of pictures I took the morning of one of the picture days. 
 

Ryan loves his Curious George!







Julia ADORES her big brother.

DC

Week 24

It's been a little over 6 months since Ryan was given an official diagnosis.  We're thankful for that happening because without it we may have never jumpstarted his road to recovery.  But the fire was lit and we're on our journey.  There have been ups and downs but the child we see today is a very different child than the one who frustrated and confused us a mere 6 months ago.  This week I want to share with you just a few of the differences...

Just today I watched Ryan sit at the kitchen table and play a game of memory with my mom and Julia.  I thought back to the times when his speech therapist would try to work with him at our kitchen table.  She would pull out a game and try to teach him to play.  He would lose interest in less than 5 minutes, and it would frustrate her.  But today he stayed interested in the game and participated for about 20 minutes.  He even made several matches and was very excited.  Each time he got a match he would get to go again.  Of course this would upset Julia because she didn't understand why it wasn't her turn.  A couple of times Ryan actually refused to have a second turn and let Julia have her turn.  This shows me that he is learning how to be sensitive to others' feelings and he can learn how to be compassionate.  The social aspect of Ryan's life is one of the things that Phil and I often worry about, but this incident is certainly a step in the right direction. 

Ryan has never liked anyone touching his hair.  While he's come a long way letting me cut his hair every once and a while, he actually let my mom try a hat on his head this week.  She's crocheting a hat for him and wanted to measure it on his head half way through.  He actually let her try it on his head, and not just once, but several times that day.  I'm proud that he let her put something on his head, but also that he is learning to be accommodating to others' requests.

Ryan has been obsessed with trains for a long time.  During the past couple of weeks his new thing is to take his train set off of his train table and reassemble it across the living room floor.  He comes up with a new design everyday and will play for hours.  Sometimes it's a simple straight line or circle or U-shape.  But on other days he creates these intricate setups that are very impressive.  Here's a picture one of his designs from this week:

We were at a birthday party this week and Ryan did a nice job playing with all of the kids.  At one point he was pretending to be a the ping pong bandit from an episode of The Backyardigans, and didn't want to break character.  He walked around the room reciting lines and acting out scenes from the show.  He certainly stood out from the other kids and drew attention to himself.  When it was time for cake Ryan was upset that we brought him one of his special cupcakes.  He so badly wanted the birthday cake with blue frosting that everyone else was eating.  Phil brought him outside to explain to him that it wasn't his special cake.  I put his special cupcake on a cake plate and cut him a tiny sliver of the regular birthday cake.  Although it was only a forkful, Ryan's eyes lit up when I showed him the cake.  He asked me a half a dozen times if he was allowed to eat it; he wanted to be absolutely sure that it was okay.  I think he was shocked that it was on his plate.  Did I give him mixed messages?  Sure.  Will he demand a piece of regular cake the next time we are at a party? Possibly.  Should I have given in?  Not according to the GFCF egg-free diet police.  Do I regret my decision?  NO.  For the thirty seconds that it took him to eat the forkful of contraband cake, he got to feel like he was just like every other kid at that party.  And he went on to eat his cupcake and enjoy the rest of the afternoon (with red cheeks, of course).

On a different note, I made Ryan turkey meatballs and he loved them!  They were GFCF and egg-free, and we all found them very tasty.    

Ryan's teacher has the kids doing a lot of art projects.  We are impressed with the progress of not only his artwork, but also his ability and willingness to explain things and tell us stories.  I have been trying to upload a video of Ryan explaining some of the projects but after numerous hours of attempts, I'm giving up.  Maybe the file was too large.  I'll try a different video next week.

DC