Week 100

One hundred weeks...WOW!

Ryan's bottom tooth has been loose for about a week now.  I picked him up after school and he was ecstatic to tell me that his tooth fell out.  He was equally excited to leave it under his pillow for the tooth fairy and he commented, "I hope she brings me a coin or dollar because she lives in the sky and has a lot of money." 


















The next morning Ryan was thrilled when he found money under his pillow instead of his tooth.  Here's the video of his reaction:
A Visit From The Tooth Fairy

One of my former students asked me if she could interview me about Ryan, so that she could write an article about him and Autism in her school's newspaper.  She recently sent me her write up in a Word Doc and gave me permission to share it on our blog.  Unfortunately I haven't figured out how to get it embedded into the blog yet.  I'll keep trying some different things because I would like you all to read it; she did a great job!

This week I went for my Anatomy scan, and let me first say, we did not find out the sex of the baby and do not plan to.  In fact, we're not going to settle on a name until the end as well, and will keep that a surprise too.  Here are a few photos from the ultrasound:

 I need to go see a specialist tomorrow afternoon because the ultrasound showed some spots developing on the baby's heart.  Please say a prayer!

What a great St. Patrick's Day weekend.  The weather was gorgeous and we were super productive.  The kids stayed outside all afternoon Saturday playing and helping us clean the cars and clean out the garage.  They even spent some time jumping.

We ended Saturday with my brother's family coming over for a corned beef dinner.  Here's a photo of our little Irish girl:

This morning I walked into Ryan's room and to my surprise this is what I found:

Without asking him to, Ryan made his bed this morning.  This was a first!  He wasn't even looking for recognition because he didn't come to tell me that he did it.  But when I saw it on my own and praised him for it, he was proud!

Another gorgeous weather day on Sunday with a visit from friends of ours as well as Grandma.  

The kids enjoyed their bubbles from grandma.  They continued to play with them the rest of the day!

DC

Week 99

Last weekend I came down with a stomach bug and we found ourselves in the Birthing Center at our hospital for most of Saturday.  An ultrasound was done to check on the baby, and all looked great!  Ryan was with us for the first hour until we were able to get help from someone to watch the kids.  The nurse said he looked scared.  He may have been a little scared seeing me in a hospital bed.  He walked over to me and rubbed my leg.  He also wanted to know if he was going to watch the doctor take the baby out!  Here's an updated ultrasound picture:

The ultrasound tech at my recent checkup printed a picture out in triplicate so that Ryan and Julia could have their own copy.  Ryan took his picture and held it up to my stomach and said, "Yup, it's the same size as your belly!"  Both kids were so excited to tape the picture to a wall in their room.  Ryan put it on the wall next to the picture he drew of Helen.

During the weekend we headed over to a house on the next street over from ours for an impromptu outdoor play date with their family.  Ryan goes to Kindergarten with their little boy.  The boy and his three sisters were riding bikes.  It seemed like Ryan felt left out that they could all ride without training wheels and he couldn't.  But he used one of their scooters and after getting the hang of it, he did a good job.  It is a rare occasion for Ryan to be able to remain outside for over an hour without having a meltdown.  Hence the reason we have been unable to teach him how to ride a bike.  Even with his bike with training wheels, as soon as he has difficulty getting over a bump, or Julia peddles faster than him, or he has trouble steering the handle bars, he takes off his helmet and goes inside full of disgust.   He gives up very easily and gets frustrated.  I don't know when most kids learn how to ride a bike without training wheels.  I guess it comes to certain kids at certain ages.  I just worry that Ryan will be behind with many tasks like these.  We are fine with him going at his own pace, we just don't want him to feel left out and allow the part of the disability that makes him get frustrated easily, to prevent him from doing something he wants to do. 

Last week I wrote about Olivia.  This week was her wake.  It was one of the most difficult things I've had to do; I can't imagine what her family is going through.  The room was filled with enlarged pictures of her, photo collages, flowers, her toys scattered about, and a video montage playing in the corner.  Her casket was white, and she was dressed in white.  She looked like the little angel that she is.  There was some comfort seeing her at peace, but sadness that she had to suffer the way she did.  God bless her family that gave her best life she could have had and showered her with love every moment!  It amazes me at how much sadness there is in this world and the strength of the people who survive through it.

DC 

Week 98

Please click on this link and listen to this little girl sing about heroes.
9 year old girl with Autism sings a song about Heroes

Olivia was a hero.  Remember Olivia?  Back in 2010 we dedicated a blog entry to Olivia.  Here is the link to it so that you can reconnect with Olivia's story: Dedication to Olivia

Olivia turned 3 two days ago.  This is a milestone that she was unlikely to achieve, but she did it!  Today was supposed to be her big birthday celebration.  Just moments before arriving at her house for the party we heard the news that Olivia passed away.  All I know is that she was peaceful, and that she got to wear her party dress this morning and she looked beautiful.  Words cannot express the sympathy we have for her family and the love we feel in our hearts.  What a special little girl, now God's angel!

May you rest in peace, sweet Olivia!

DC

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 96- Helen

Helen, 4/14/02 - 2/18/12

When is it okay to talk to your children about death?  We were faced with that decision today and we chose to talk open and honestly with the kids.  Our cat, Helen, has been very sick and at her visit to the vet today it was discovered that she had kidney disease.  She was in the final stages and her kidneys were failing.  Her red blood cell counts were only at 9% and she would need a blood transfusion before she could be given any medication.  Even then, there would be a small chance that the medicine would do anything at all, given how far along the disease had progressed.  And even if the medicine did help, the disease is not reversible.  We could manage her pain at home but she wouldn't be her usual self, and it wouldn't be long before her kidneys failed altogether.  We had to make a decision, and after seeing her suffer at home all week, we just couldn't stand the thought that her suffering would continue to get worse. 

The four of us went back to the hospital to say our goodbyes before she was put to sleep.  We decided to take the kids with us since Helen has been a part of their lives since they were born.  Both were very upset, but especially Ryan.  We held her and talked to her and then the kids and I waited in the waiting room. 

 
Phil was so brave.  He stayed in the room with Helen until the end.  At home, we prepared a burial spot.  Ryan wanted to be the one to put the bag into the hole in the ground.  He asked a lot of questions, the same ones over and over.  He didn't understand why we had to put Helen there, and he wanted to know when she was coming back. Ryan was upset that we weren't going to have a pet anymore, and he also said he was going to go out to the yard one day and bring her back inside.  Uh oh!

Ryan has broke out into tears numerous times today.  I encouraged him to draw a picture to hang in his room.  Here is the picture of himself and Helen.

I am devastated over this loss and I can't imagine life without Helen.  Everyday there will be something that reminds me of her, I just know it.  Helen would have turned 10 this April.  I feel guilty that her life ended so early.  Being an indoor cat I thought she would be in my life for many more years.  I wish we had known about her disease sooner so that it could have been treated before it caused her kidneys to fail.  The vet said this could have developed as far back as 12 months ago.  Helen certainly did a great job of hiding her symptoms and it was only during the past week that we really knew something serious was wrong with her.

Oh my beloved Helen, I will never forget what an awesome companion you were to me.  You were always by my side and I will miss you dearly. Love, mommy

DC

Weeks 94 and 95

Ryan continues to be excited about the new baby.  He gives my belly a kiss each day and talks to the baby.

We received Ryan's 2nd quarter report card. 

Elementary report cards are scored on a 1 - 4 scale: 1 - Does not meet standards, 2- Developing Skills to meet standards, 3 - Meets the standards, and 4 - Meets the standards with distinction.  Ryan scored 2's and 3's.  The only areas that he went down in were Handwriting (a 3 to a 2), Demonstrates Application of Mathematical Concepts (3 to a 2).  The comments from his teacher was no surprise if you have ever spent time with Ryan.  They were requires significant teacher support and assistance, struggles with using time wisely, and a pleasure to have in class.  His Physical education teacher wrote that Ryan requires significant teacher support and assistance, needs to improve his gross motor skills, and that he needs to practice his ball skills.  Overall it was a good report card and we are very proud of Ryan and how far he has come.


A Two Minute, Feel Good Video...Check it out.

Ryan with his February school project

Ryan enjoying an afternoon on the playground with some friends.

Ryan has been asking for cake pops. I wasn't sure if they would come out okay with a GFCF mix so I baked them with regular cake mix and let Ryan cheat.  He did really well.  Usually it is evident when he goes off of his diet.  But he enjoyed the cake pops so much that his behavior was extra good for a couple of days so that he would earn the privilege to eat a cake pop for dessert.   I do want to attempt making them with a GFCF recipe and see if they form and hold correctly.

Enjoying a special treat of cake pops

Anyone looking for some chocolatey recipes for Valentine's Day for those on a gluten free diet?  Check out these two websites.  They have some yummy recipes!
Gluten Free Goddess

multiplydelicious.com

On 2/12 we had an early birthday celebration with family for my birthday.  It was nice to celebrate, but I also took a moment to reflect on how much has gone on this past year.  Today was the due date of the baby girl we lost back in June.  Time really does go by fast, and we're happy to have so many good things to look forward to in 2012. Here are some pictures of the celebration:

DC

Week 93

We had Ryan's CSE meeting on January 19th and as expected they qualified Ryan for speech services.  We are still annoyed that we wasted all of this time.  He could have been receiving speech services since September.  We are still not pleased with the progress that we are seeing with the program at Wappingers.  He made such great progress by this time last year we are now wondering if we made a mistake in not sending him to a full day program.  But we did meet with his new speech teacher and she seems really nice and we are hopeful that with the twice a six day cycle sessions we will start seeing some progress with Ryan.  We will keep you updated.
 

Getting ready to play in the snow!

Ryan loved throwing snow at Daddy and Julia!

Ryan with his cousin, Johnny.

GFCF brownies!

Making very elaborate paper airplanes with Nonna and Papa!

Happy Birthday Uncle T!  

PC

Ryan and Julia are both very excited about having a baby brother or sister.  Ryan now says he wants a baby brother and might want to name him "Batman Beyond"; too funny!  Now that the baby bump is evident we are getting tons of questions about the sex of the baby.  We are not planning to find out and want to be surprised.  So usually the next question to follow is which we would prefer.  I know it is somewhat of a cliche, but we truly just want a healthy baby.  Once you actually have your own child this statement really hits home.  I look at my children and am so grateful for who they are and what joy they have brought us.  I know we are very lucky!  As difficult as things may sometimes get, and the sacrifices we need to make, it is nothing compared to what others have to face with a truly sick child.  I would feel an enormous amount of guilt and sadness bringing a child into this world who would suffer from pain; sadly there is way too much suffering in this world already! 

DC

Week 91

Ryan had a good week and a busy weekend.  I made him flashcards of the site words he is working on in Kindergarten, and he did a great job.  There are 100 and we started with 6 of them.  Once he was able to recognize and read all of them back to me, I added another 6.  And then another 6.  So he is up to 18 words.  He struggles with a couple of them, but for the most part he has them memorized.  Julia participated in the same activities with us and learned how to read the same site words.  It was interesting to see the difference in how each of them handled the task at hand.  Ryan wanted me to read him the word, then he studied it, and somehow memorized it.  For the ones he didn't quite memorized I tried to get him to sound it out, but he had a lot of difficulty doing that.  He made numerous mistakes with the sounds that the letters made.  And most times, he just refused to sound it out, knowing he wouldn't be able to do it.  Julia didn't want me to tell her the word, or even help her sound it out.  She sounded each one out on her own, and was able to correctly read the word most times.  We already knew Ryan is a very visual learner, and now we know Julia is a very auditory learner.  We'll keep practicing the cards until we get up to knowing all 100!

Ryan did cheat a bit with his diet over the weekend as we visited family and friends, but overall he did a nice job.  Here are some pictures of our trip to Eastchester and Brooklyn on Sunday:

Hanging with his cousins!

New ornaments

Meeting my friend's baby for the first time.

With the anniversary of our first miscarriage passing this week, it was reassuring to get another ultrasound and hear that all is going exactly on track with this pregnancy.  By the way, Ryan would like us to name the baby "Batman Beyond".

DC

Week 90

We have been so busy the last few weeks.  We have had a lot going on and the blog has taken a back seat.  But we are back and have some updates for you.

Just after our last blog entry, Ryan was retested for speech. This was something that he received 3 times a week last year but our current school district cut it out of his IEP.  Now they are telling us that they noticed that Ryan had some speech delays and they wanted to get him tested.  This is something that made us both angry, because we fought to get him speech this year but they refused.  Now they are telling us, as if we did not notice, that Ryan was behind in his speech and that he needs to be tested.  He could have been receiving speech services these past five months if they listened to us back in May.  But he was tested and we have a meeting next week to set up his speech services for help with pragmatics and language.

Ryan had a lot of fun this Christmas.  This year we had Christmas Eve, Christmas Day, and the day after Christmas all at our house.  We had a lot of company visit and Ryan had a great time playing with his cousins.

His large gift from Santa was a Lego table which he sits at almost every day and plays.

While everyone was having a great time, this was the start of Phil's medical problems.  Phil had to be rushed to the ER for kidney stones on Christmas morning, right in the middle of us opening gifts.  He was in the ER for over 4 hours.

New Years Eve we spent at Dawn's parents' with Uncle T, Auntie B, Amelia, and Alyssa.  The kids had a great time staying up to watch the ball drop and ring in the new year.  It was another exciting time with the cousins and Ryan had a lot of fun learning how to play pool with Papa.

Pillow fight with Amelia

Happy New Year!

Ryan displayed good patience learning from papa how to hit the ball.

After the New Year, Phil had his kidney stone blasted.  He had so many complications with this procedure that he ended up back in the ER three more times in four days, and finally had to be admitted to the hospital for emergency surgery to remove the stones and drain the infection out of his kidney. This surgery was supposed to be a simple, in and out procedure, but since nothing with these kidney stones had been simple so far, neither was this.  Some complications arose and he spent two nights in the hospital.  He was discharged today (Sunday, January 8, 2012) and both kids were very happy to see him (and mommy too!)

The break from school during the holidays, and constant change in care givers as we spent so much time back and forth in the hospital this week, threw Ryan's schedule off tremendously.  He did not want to go back to school after a week and a half of vacation and gave us a real difficult time getting ready in the morning.  He does not want to do his class work and even forgot to bring his backpack to school one day.  He's also giving us a difficult time about writing his last name and doing homework.  He seems a bit depressed about going to school, and we'll be discussing this further during his CSE meeting at school next week.  Hopefully with everyone getting back to a regular schedule Ryan will settle back into his normal routine.

Although it doesn't seem like we've had the best of starts to the new year, we do have a lot to look forward to this year!!!

12 weeks

We hope that everyone had a wonderful Holiday Season and we wish you a very Happy New Year.

PC and DC