Week 151

I want to begin by saying "Thank you!" to everyone for helping us through this past week.  The prayers, the emails, the phone calls, the texts, the hugs at work, and the offers of help, are all much appreciated.  With help, we were able to secure an intake appointment for Ryan with a therapist this Friday and another appointment with a psychiatrist next week.  We're still making calls and waiting for return calls from other doctors that were recommended to us.  This journey is far from over so we are keeping all of our options open. 

It was an overwhelming week trying to make and take phone calls with the few free moments I have during the school day.  We kept in close contact with Ryan's teachers and social worker at school.  The staff in his school has been very supportive.  With their help we were able to modify his IEP for him to get 8 individual counseling sessions between now and the end of June, and modify his homework.  For the most part we were able to get Ryan to complete most of his homework this week.  I think that is the time of the day that Ryan (and us) need the most help.  For anyone it can be overwhelming to come home from a long day at work and have to deal with making dinner and completing an evening routine of homework, bath, and bedtime.  Ryan's opposition to doing these things, and his constant bickering with us and Julia, is beyond frustrating and exhausting for us.  And I'm sure it is even more frustrating and exhausting for Ryan.  He is awake by 6am, out of the house by 6:30 am, at daycare for 2 hours, and at school for another 7 hours. He is expected to hold it together all day, while performing tasks that he finds "boring" and difficult.  Then he comes home, and we expect him to continue to do tasks that he finds "boring" and difficult.  As the work becomes more challenging and demanding, I fear Ryan will continue to struggle.  And this is not the same Ryan; there is something different about him these past few weeks.

One of my administrators at work offered to help me complete paperwork for assistance with Ryan during his hours at home.  He is the special education administrator in our building and knows a lot about this kind of stuff; he said there is a homework program out there where college kids come to work on homework with children with Autism.  I didn't even realize there was such a program.

As I mentioned before, this journey is far from over.  There is a lot of work to be done, and issues to be addressed.  There is a lot for us to learn, and resources for us to uncover.  There are questions upon questions to be asked, and I pray that there are answers waiting for us.

There were a lot of struggles with Ryan this week, but there were also some silly and fun moments.

Getting ready for St. Patrick's Day!

Having fun with our glasses from nonna.

Ryan focusing on putting together his project from our neighbor, Carol.

Ryan's St. Patrick's Day gels from Carol.  He hasn't lined things up like this in a long time.  He usually places them randomly on the window.  Why is he categorizing them and lining them up all of a sudden?

Happy Jack.  Unfortunately Jack is sick again.  He has a terrible cough and runny nose, but he is still smiling!

DC

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

Week 19

The Week of Celebrating Birthdays

Amongst our usual routine, we celebrated three birthdays in the family this week.  First we took Phil's mom to Olive Garden for her birthday.  We looked ahead at their menu to make sure there would be items for Ryan to eat and there were.  The waiter wasn't familiar at all with the GF options and he had to come back to our table three times to clarify Ryan's order and give us information about that part of the menu and how the food was packaged, but it all ended up working out okay.  He had the GF pasta (he had it with marinara sauce because it comes prepackaged like that) and it was very tasty.  They also made him grilled chicken on the side.  There wasn't anything on the dessert menu for him, and I really didn't expect there to be. 

Ryan's behavior was very silly for the most part with some periods of defiance.  We're not sure if his refusal to go to the bathroom for the previous 8 hours had anything to do with his behavior.  He went almost 12 hours without using the bathroom, and it's not like he didn't drink all day.  This is typical for Ryan (not 12 hours) but often he will go 7 or 8 hours without going to the bathroom.  He holds it in as long as he can.  I'm not sure if it's because he doesn't want to stop what he's doing or because he likes to be in control and doesn't want people to tell him when to go.  Here's a picture of Ryan with Grandma Campbell.  We took several pictures but he was silly for each one of them. 

The next birthday party was Ryan's cousin, Amelia.  It was held at Animal Kingdom.  They spent the first hour taking a tour of the pet store, stopping at various sections to learn about the animals and touch them.  Ryan stayed with the group for a little while and then got bored.  He hung out with Phil, but was sure to hop back into the kids' line when they got up and moved from one section to the next.

During the week we found out that pizza would be served.  I called the pizza place ahead of time and they were able to make a GFCF pizza with a day notice.  It was a little personal pizza and Ryan was very excited when he saw it.  He didn't even look at what the other kids were eating.  The pizza looked great, smelled delicous, and tasted yummy.  I was skeptical however, because the cheese tasted like regular mozzarella.  I called the pizzeria afterwards to thank the manager for make the special pizza and they confirmed that the pizza was only GF.  There was a mixup with the order and they didn't use the vegan cheese.  No wonder it tasted so good!  But I would still order from there again and let him try out the true GFCF one next time.  Here's a picture of the pizza; he had two slices at the party, two when he got home that night, and the remaining two the next day.  On the way home he was very protective of the pizza and he wanted to make sure the last two pieces were put away in the fridge so he could eat them the next day.                                                                           

I also included a picture of him eating the pizza at the party... he's been making a lot of different faces lately!

I also called the bakery to find out what kind of cake was being served.  It was yellow cake with strawberry filling and whipped cream on top.  I made Ryan a GFCF yellow cupcake with vanilla frosting.  Then I cut some strawberries and put them on top and Ryan ate this while cake was being served.  I used the Cherrybrook Farm yellow cake mix in a box because it is an eggless recipe.  I didn't think it tasted as good as the Bob's Red Mill cake mix I used for my dad's cake last week.  Although Bob's isn't eggless, I used the flaxseed mill to replace the eggs.  But I was glad that Ryan liked it (or at least tolerated it) because I was going to serve the rest of the cupcakes the next day at Julia's birthday party.  Phil agreed with me on the taste, and my nieces did too.  They ate my dad's cake last week without a problem, but they only ate one bite of these cupcakes at Julia's party and asked for a piece of cake.  Note to self... make another batch of cupcakes with the Bob's Red Mill mix, and freeze them for times that Ryan will need to bring a special treat to school during the year. 

During Julia's party, Ryan was on the quiet side and kept to himself.  He did spend some time watching the girls play with Julia's new video karaoke machine but I could tell he was really tired and was feeling a bit overwhelmed.  During dinner he spilled a little bit of his drink on his shorts, and that did it.  He went upstairs to change his clothes (because he dislikes having wet clothing touch his body) and he layed down in bed.  He stayed there the remainder of the night until the next morning.  We tried waking him up to come down and sing Happy Birthday, but he was cranky and refused.  He went right back to sleep.  He woke up this morning, went downstairs, and asked, "What happened to the party?" 

Here are a couple of pictures from the party.  We took a family photo but Ryan seemed very distracted with everything going on around him.  He participated in the karaoke for a little while but had more fun watching the girls.

During the week I heard from a lot of people who read last week's blog about Olivia.  Everyone was touched reading her story, and yet still touched base with us about Ryan and lended their support.  Here is a clip from an email I received from one of my college friends... "Your post this week on the blog is beautiful...heart-wrenching and heart-felt. Cut yourself some slack, though, my friend. You have every reason to have a broken heart over the issues your son is dealing with. That doesn't mean you're not empathetic to everyone else's problems....but you have the right to feel whatever emotions you need to when it comes to your family, too."  Well said!  We continue to receive help, and emotional and financial support from our family and friends, and are grateful.  It is this support that helps get us through.

Just this morning we had to try something different giving Ryan his B12 injection.   During the past week we've had a lot of difficulty giving Ryan his shots.  He used to be nonresponsive in bed.  We were able to roll him over, remove clothing, wipe his skin with the alcohol wipe, and insert the needle without any movement from him.  Now we can barely touch his clothing without him rolling all over the place, swatting his arms out at us, and scratching his skin profusely.  I don't know what changed during the past week, but we've been stressed out trying each night, several times a night, without success, to inject him.  So this morning Phil convinced me that we had to try while he was awake.  We put a bandaid on his arm with numbing cream, and then an hour later, out came the needle.  I won't get into the details because after last week's emotional blog entry I figured I would make this one 'tear-free'.  But I can tell you that it was an awful experience for all three of us and the stress I felt seeing and experiencing his anxiety during that five minutes lasted for hours afterwards.  I'm not sure who cried more, Ryan or me. 

Can these injections possibly be worth it?  Well I can say that Ryan had a wonderful day.  We spent the day up at my parent's house.  He was friendly with strangers, he ate well, he did a great job in the pool, and he spent over an hour doing fine motor skill activities with ease and without frustration.  In the pool Julia was being her usual self and Ryan told her that he would stop being mad at her if she "calmed down and took deep breaths".  Impressive!  So are they worth it?  Are the injections helping Ryan on his road to recovery?  I don't know.  We'll never know exactly what it is that is helping the most; maybe it is the combination of treatments, and if so I don't want to take the injections away.  Only God knows and I have faith that he will give us the strength we need to find a way to continue what we are doing. 

DC