Week 57

Last Sunday we brought the kids to Guy and Elaine's wedding.  This was the first wedding that the kids have been to and we decided that we were not going to bring the kids to the church.  The kids spent the time at Dawn's cousin, Donna's house with her two boys.  They were at Ryan's birthday party the day before and they all had a great time.  Ryan is going to be in a wedding in October so we thought we should give this wedding a try as a practice.  We called the place ahead of time to find out the food options and there were a few things that he could eat but most of the items he could not.  We did let him cheat a little but we tried keeping an eye of what he ate and we did bring his cupcakes for dessert.  The place was very accommodating and we only had one issue.  When dinner finally came out they put a plate of fried chicken nuggets and french fries on his plate.  This was not what we had worked out with the chef and our waiter.  However, the young kid that was helping out did not realize this and just put a regular kids meal in front of Ryan.  It was already so late at night and we told Ryan that his dinner was coming.  But then we had to take it away.  He just threw himself on the floor and it took a few minutes for him to get out of it.  We had to joke with Ryan by telling him that we were going to eat his new meal and that got him up and into his seat.  

He had a great time at the wedding with all of the dancing and loud music.  They had a mini-smoke machine, laser-lights, and several flat screen televisions.  We thought that it was going to be too much for him but we were wrong.  He loved it!  He was dancing with his sister and cousins and with another little boy that has autism as well.  The kids kept dancing all night and they were usually the last ones on the dance floor each time they cleared it to serve food.  They all had a good time but it was a very late night.  We did not get home until almost midnight and Ryan fell asleep almost immediately in the car.  Below are some pictures and videos of the event.

Alyssa, Ryan, Amelia, and Julia with Nonna

Having fun at the cocktail hour.

Looking sharp with Uncle T!

Pictures of Amelia and Ryan

Trying the salad!

Dancing with Amelia

Having fun on the dance floor

Instead of a wedding favor the bride and groom make a donation to Autism Speaks.

A few videos of the kids dancing! 

We also decided that we needed to finally bring the kids to the dentist. We took them on Tuesday and they did a really good job.  We took them to my dentist and the hygienist did a great job with Ryan.  She let him look and touch everything first before she tried to clean his teeth.  He was a little hesitant at first but he watched Julia go first.  He was not too crazy about the chair going all the way back but the hygienist was able to get most of the cleaning done.  The place was not a pediatric dentist office but they really made the kids feel very comfortable.  They were calm and patient with Ryan and let him stand up so they could finish cleaning his teeth. I have heard of places asking the parents to hold their children down so they could clean their teeth but not here.  They scheduled 30 minute appointments for the both of them and we were done in about 40 minutes total.  We did not feel rushed or pressured to hold him down.  Even the dentist let the kids stand up as he examined their teeth.  They allowed the kids to select a prize out of the treasure chest and they gave the kids balloons.  A great first experience with the dentist for Ryan and Julia. 

We were not sure if the birthday party/wedding weekend took too much out of Ryan but his behavior was very off this week.  He had difficulty at school and we got several bad reports from his teachers.  Ms. Sue also had to call Dawn after Ryan was having a 30 minute meltdown.  We had stopped the red medicine injections a few weeks ago but we decided this week to start them back up again to see if it helps.

He also got another gift in the mail, this one from Aunt Anne, and here is a video of him trying it out. 

This Tuesday we have Ryan's Annual Review with Wappingers CSD and they are already starting to give us problems.  They called us this Friday afternoon and they dropped a few bomb shells on us. We were under the impression that they had a full day integrated program like he is in now at our elementary school.  However, they told us that this program is only half day and at a different elementary school in another part of the district.  We hope that this will all work out but they are trying to tell us that they will be able to service all of Ryan's needs in a 12:1:1 half day program and they will be taking away his speech services.  We don't know yet about O/T and the counseling portions; I guess we'll have to wait to hear what they say on Tuesday.  He is in a 6:1:1 full day program now receiving speech, O/T, and group counseling.  We will tell you more next week.  I can now understand why my special education parents are crazed by the time they get to the high school level.  We have only been dealing with the system for a short time and we are already crazed!   


Do not forget that The Autism Speaks walk is Sunday, June 5th in White Plains.  Click this link to join our team or make a donation.   
The Ryan Express Team Page

PC

Week 55 - Happy Mother's Day!

What it means to me to be Ryan's mommy...

-Never knowing what mood I will find Ryan in, but always knowing that I can eventually get him to smile.  And what a smile it is!

-Constantly worrying!  Worrying about his well being, worrying if I'm doing everything I can for him, worrying about his future.

-Tired and busy, yet grateful he's in my life.

-Happy and blessed to feel his love.

Mother's Day Tea at Noah's Ark where I was given handmade gifts and homemade treats!

And Ryan came home from PARC with a card with the following statements answered by him. 

My mom's name is: mom
She is special because: she makes me dinner
I like when my mom: tickles my nose
My mom can do many things!  I think she's best at... her paperwork
My mom is really funny!  She always makes me laugh by...making her funny faces
My mom is as pretty as a... mom
My mom is smart!  She even knows... how to talk on the phone
I'd like to tell my mom...I love her!

Some I got such a good chuckle about and I really enjoyed reading it!  But do you want to know what my best gift was?

Remember this picture taken in March?

Taken May 8, 2011 - The BEST Mother's Day gift ever!

I don't think it is one particular thing that has caused this improvement in his skin but rather a combination of things.  For one, Ryan has been taking showers rather than baths lately.  And afterwards we continue coat his legs with the almond oil.  And during the past week we've been using the new supplement called Glutomine Plus Powder that we mentioned in last week's blog, and have not been giving him his B12 injections.  We're happy to see the improvement and feel the improvement... his skin is so much softer!

Ryan had a pretty bad ear infection this week and needs ear drops twice a day for a week.  His tube is still in his left ear where the infection occurred and if it doesn't fall out soon we'll need to have it surgically removed.  He goes back to the ENT in June for another checkup. 

We had a great Mother's Day in the Campbell family!  Here's a picture of one of my gifts... a blue heart glass necklace with sparkled pieces inside of the glass in the shape of puzzle pieces.  It is part of a collection by a jeweler who donates part of the proceeds towards the fight against Autism.

My other gift I am using to type this blog... a new laptop, my very first laptop!  Much needed and appreciated!

Our moms also enjoyed their gifts and spending time with the kids today.

Getting bored of the same old posts each week?  Getting tired of hearing our side of the story?  Well...

We have some special posts coming up this week in honor of Ryan's 5th birthday.  Be sure to check back each day!  And for those of you who own a Ryan Express shirt, please wear it on Thursday, May 12th for Ryan's big day!

DC

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 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

Week 34

Lots of photo opportunities this week to share with you!

As promised last week, here are some pictures of Ryan at our family reunion last Sunday.  He loved the show put on by the clown and really got into it.  It kept him entertained and on task for an hour.  He even volunteered during her show. 



Ryan wasn't crazy about standing next to Santa Claus
















Even though Ryan enjoyed the clown, he did cover his ears whenever she did anything with the balloons.  He was afraid one would pop and be too loud and scare him.  All of the kids were getting up to the microphone to introduce themselves and tell the crowd who their parents and grandparents were.  Just about every child did this, but Ryan didn't want to.  At one point we almost convinced him and he started heading up to the microphone, but then everyone started clapping and cheering for him because he was being brave, and he turned around and sat right down.  I guess it was the noise or over abundance of attention he was getting.  Several family members commented on the big changes they saw with Ryan.

During the week we had an appointment with Dr. Bock for a checkup.  While in the waiting room Ryan sat quietly at a little desk and wrote with a pen in a coloring book.  There were other children in the office bouncing around and their parents were running around after them and cleaning up after them.  For once Phil and I felt relieved not to be the ones chasing our kid.  Ryan was well behaved not only in the waiting room, but during the entire visit.  Dr. Bock seemed impressed with Ryan's improvements and accomplishments.  We told him about the sign language and Dr. Bock asked Ryan to show him, but he wouldn't.  Ryan isn't great about performing something on the spot for people.  I don't think he likes the attention. 

So the summary of our appointment: we are stopping the Nystatin.  We are increasing the oils because Ryan's skin is still very dry and scratchy.  So now we have to give him oils in the morning as well.  And because we feel the injections are helping, he suggested doing them every other day rather than twice a week.  I am thankful that Ryan is good about getting the injections; I don't think we would have agreed to give them every other day if we had to go back to holding him down while he's kicking and screaming.

On Saturday Ryan performed in PARC's Holiday Show.  I felt so bad that I couldn't attend (Julia had parent day at ballet class), but Phil video taped it for me.  Phil's mom also went and both said the show was great.  Ryan was on task the entire time.  He followed all of the dance moves and sang every song.  We had him dressed in a shirt and tie, and Ryan pulled out the front tails of his shirt while on stage.  Luckily he was in the back row!  Here are some pictures that Phil took:

Still a little unsure of being near Santa, but getting better.

Ryan with Miss Sue, his special education teacher at PARC

Ryan with Miss Rose, one of the head teachers in his classroom.

After the show Phil's mom took us out to lunch.  Both kids were a little wild, but I guess better wild at that time than on stage!

And this blog wouldn't be complete this week without a couple of pictures of Julia at ballet class.

Ryan and Julia had a playdate at a friend's house.  They all made gingerbread houses.  Ryan enjoyed this task, and did a GREAT job eating just a few candies that I told him were okay and he steered away from all of the others.  What great will power!  Not many people can sit next to a bowl of M&M's and not eat at least one!



The finished product!

I caught Ryan and Julia working on a Sudoku puzzle.  Okay, they weren't following the rules, but they were practicing tracing their numbers.  They are their mother's children!

I thought this was hysterical- they both looked up at me at the same time giving me the
"we're busy, stop taking pictures of us" look!

Yes, more hats made by Miss Jessie at Noah's Ark!  Ryan proudly wears them around all day!

On another note, our thoughts and prayers go out to Baby Olivia (see our blog on Week 18) who has been admitted into the PICU today with pneumonia.  Get better soon Livvy!

DC