Week 97

To get our minds off of the passing of Helen, we took the kids for an overnight visit at nonna's and papa's house.  Ryan told them all about us putting Helen in a hole in the backyard.  It was good to get away and it did provide some distraction, but it was difficult to forget and put aside the feelings of sadness.

Ryan enjoyed climbing into my uncle's tree house.

 Ryan also made his own GFCF pepperoni pizza.  So did Julia.  Except she wouldn't eat hers!

On the ride home it was a clear night and the stars were shining bright.  I told the kids to look out their windows to see the stars. Julia said that you can make a wish on a star, and Ryan replied, "I wish Helen wasn't in a hole anymore."  Ryan has been so sensitive through this entire experience.  He's been fixated on things before, but there is something comforting knowing that Ryan has this sensitive, caring side to him that reminds me of myself.


There are also all of these feelings of guilt.  I feel so bad that I was not brave enough to remain in the room during her last moments.  Phil was brave enough to be there for me, but it should have been me. She was probably scared, and I should have been there holding her. I should have been the one to soothe her; I should have been the last thing she saw and my love should have been the last thing she felt. 

This week we received our first pet sympathy card.  It was from Helen's vet.  Inside was a little card with the poem The Rainbow Bridge.  For those that may not have read it before, I thought I would share it here:

The Rainbow Bridge
Inspired by a Norse Legend

By the edge of a wood, at the foot of a hill,
is a lush, green meadow where time stands still.
Where the friends of man and woman do run,
when their time on earth is over and done.

For here, between this world and the next,
is a place where each beloved creature finds rest. 
On this golden land, they wait and they play,
till the Rainbow Bridge they cross over one day.

No more do they suffer, in pain or in sadness,
for here they are whole, their lives filled with gladness.
Their limbs are restored, their health renewed,
their bodies have healed, with strength imbued.

They romp through the grass, without even a care,
until one day they stop, and sniff at the air.
All ears prick forward, eyes dart front and back,
then all of a sudden, one breaks from the pack.

For just at that instant, their eyes have met;
Together again, both person and pet.
So they run to each other, these friends from long past,
the time of their parting is over at last.

The sadness they felt while they were apart,
has turned into joy once more in each heart.
They embrace with a love that will last forever,
and then, side-by-side,
they cross over... together.

The next day we received another sympathy card from our friend, Bridget.  She also included something in the card.  It was the story of The Rainbow Bridge.  Very similar to the poem, just in a story form.  I was lucky enough to find a heart shaped stone on the Internet, with the story inscribed on it, and we ordered it for Helen's burial spot.  We are even more lucky to have such caring and loving people in our lives to lend us support when we need it.  Whether it was a card, a phone call, an email, a visit, or a prayer said, a big thank you from the bottom of our hearts to everyone who has helped us through this difficult time!

DC

Week 69 - Vacation!

Vacation Time!

We booked a week long vacation to Williamsburg, Virginia.  Ryan was not himself most of the day Saturday while we were running errands, packing, and preparing for our trip.  We left early Sunday morning to tackle the 8.5 hour ride.  Ryan has been on long trips before, but he was unusually hyper for part of this car ride. We figured it was probably due to the food he ate Friday night at the baseball game and also due to the excitement to go on vacation

With the joys of vacation also comes the downfalls of vacation for someone on a special diet.  We did our best all week to give Ryan his regular diet foods when available.  We made lunch and brought it with us to the parks on most days and the meals we ate in the condo were on his normal GFCF diet.  But there were times where we were getting treats and snacks out and about, and we let Ryan cheat.  We certainly paid for it with his behavior, but some of that behavior would have been there anyways since we ran the kids ragged all week.  There wasn't much downtime, and we certainly can relate to the saying, "We need a vacation from our vacation!"

By the way, I tried this ice cream that we bought for Ryan to keep in the condo all week and it was excellent!


Peanut Butter Zig Zag

 Sunday:
After checking in to our condo and unpacking, we headed over to Busch Gardens.  Ryan loved riding the rides, so much so that he barely wanted to watch the fireworks in the evening.  We gave in to the kids begging for cotton candy and so began Ryan's week of food indulgence.

Monday:
We spent the entire day at Water Country, a water park close to Busch Gardens.  We opened and closed the park and Ryan rode almost every ride, many of them more than once.  He was excited to ride the big, fast rides.  I wish I brought a water camera with me to take more pictures but I didn't so I left my regular camera in the locker most of the time.  But there are a couple of pictures and a video below.  We did some rides all together as a family but there were times where Ryan wanted his independence so we let him ride some of the smaller rides while we watched him from the sidelines.  Ryan's OCD was in full force today and he was a bit on the bossy side.  But overall, both kids did a great job lasting 10 hours of constant walking and swimming on a day that was close to 100 degrees and was still in the 90's when we left the park at 8pm. 

 
Tuesday:
After all of the walking we did the day before, we opted to hit the beach.  It was another hot and sunny day and we only lasted a couple of hours.  We went back to the condo and took a dip in the pool which proved to be refreshing.  After dinner we did some shopping for souveniers and gifts and homemade fudge, which the kids loved!  During our shopping spree we found a Thomas the Train section, and Ryan enjoyed playing for a little while.  Since he plays with his trains every day at home he was going through withdrawal!

And just when we thought we couldn't fit anything else in, we went to a pirate-hemed mini golf course.  Ryan got a hole in one on the first hole, but then after that it all went downhill.  The kids didn't want to even try to play the game correctly.  It was hot and sticky and they were tired.  We were all losing our patience.  We got through the 18 holes as quick as we could and called it a night.

Wednesday:
We spent the day, another hot one, at Busch Gardens.  We dressed the kids in their bathing suits and spent part of the day enjoying the sections that were available for kids to run through the sprinklers and went on some water rides.  Both kids continued to enjoy riding the rides, the faster the ride, the wider Ryan's smile!  We saw a few shows as well and of course ate some treats!



There is Phil and Ryan in the last row!

This is the picture taken of us on the log flume.  Phil was the only one who didn't look terrified of the steep drop!

Thursday:
We decided to slow down the pace and visit Colonial Williamsburg today.  Big mistake.  The kids were not interested at all and there was just too much walking around with very little to do and see that would keep their interst.  Within two hours we were back at the condo and we all took a nap, except for Ryan who laid in bed with us and watched TV.  For dinner we went to a pizzeria that sold GFCF pizza, and as an added bonus, their pizza is 100% organic.  It was tasty, but a little on the expensive side because everything is organic.  After dinner we returned to Busch Gardens for more rides, shows, and fireworks.  Ryan's silly and eratic behavior continued and he had a few meltdowns.  Some I would say were age appropriate and just from being tired, but it is obvious to us that the inconsistency in his diet is partially if not mostly to blame. 

Trying to make the best out of Colonial Williamsburg

Before watching the Pirate 3D/4D show at Busch Gardens; Ryan got spooked a couple of times!

Phil, Ryan, and Julia on the kiddy roller coaster ride. 

Making wine in Italy!

What would a visit to "Italy" be without enjoying some sweet desserts before the firework show?

Julia with the cast of characters who performed in one of the shows we saw.

Friday:
With the end of our vacation looming around the corner we decided to make a return trip to the water park since the kids enjoyed our first visit so much.  We got there just before it opened but didn't stay until closing.  By 5pm we were exhausted and headed out.  But since we knew the park much better than we did on Monday, we still went on just as many rides.  We knew which order to do them in and avoided waiting on lines.  But it is impossible to avoid the walking.  In fact, by the end of the day, Ryan had worn a hole in the bottom of one of his brand new water shoes! 

Brownie sundae in a waffle cone

They were so yummy on Monday that we went back for another on Friday!

The kids with the performers of the diving/acrobatics show.

Saturday:

This was the only day we went out for breakfast since breakfast seems to be the most difficult meal to find food for Ryan to eat.  We stocked the condo with his milk, cereal, waffles, and french toast sticks and that served us just fine all week.  But we again wanted a treat so we went out for waffles and pancakes.  Afterwards we went to the beach again, but didn't do much swimming because there were lots of jellyfish out.  The kids spent a couple of hours playing in the sand and then we headed to the condo pool to cool off and wash some of the sand off.  By the afternoon it started to rain and we were actually thankful for two reasons: 1. it gave us an excuse to hang out in the condo and pack up, and 2. we were thankful the rain held off and didn't ruin our week.  Ryan continued to be hyper and jittery, and had trouble sitting still most of the day.

Being silly in the car.

Searching for sea shells.

 

What a great week!!!

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