Week 128

In response to a suggestion last week we browsed through a site called difflearn.com.  There are several videos available that model social situations for children.  We were able to watch a few of the scenarios available on the videos and this brought us to searching You Tube for more videos.  We've also asked some Librarians and Special Education teachers about resources they may have access to that we can borrow.  We had not explored video options yet, so thank you for the suggestion, Alyce.  I have a couple of vignettes picked out to show Ryan this weekend and I hope he is interested in watching them and learning from them.  They will also provide an opportunity for us to discuss with Ryan certain social situations in school and on the bus and appropriate ways to handle them.

These videos couldn't come at a better time.  As I mentioned last week, Ryan is drawing negative attention to himself with the ways he reacts to situations and also through some of his unusual actions through the day.  On one of the days off from school we invited two of Ryan's friends over for a play date.  Both boys live in our neighborhood and have had play dates here with Ryan before, but never at the same time.  The two boys got along well and played for about an hour.  Ryan kept wandering off to play by himself or wanted to watch television.  We reminded him several times that he can watch TV or play alone when his friends weren't there and he should play with them before they leave to go home.  With each reminder he happily returned to play with the boys, but it would last for about 5 minutes before Ryan wandered away from them.  Naturally the boys just started ignoring Ryan with expectations that he would not return to play with them.  I wonder how often this happens at school.  Does he play with others at recess, during free time, in gym class???

During one of our Saturday morning religious education classes the parents were invited in for an orientation in the classroom.  It was 15 minutes long so the teacher spoke quickly about procedures and expectations and curriculum for the year and opened the floor up to questions.  A few parents asked questions and then I saw Ryan raise his hand.  The teacher called on him and he rambled on for over a minute about the candy corn that grandma brought him that morning.  It was so inappropriate for the setting and I could feel my face turn bright red in embarrassment for him because all of the students and parents were staring at him, a few chuckling under their breaths.  The teacher didn't know what to do and looked at me.  I asked Ryan to save his story for after class and the teacher agreed and continued on with the presentation.  I remember thinking to myself why can't he just sit there like the other kids and let the teacher do her thing.  But when recalling the situation to a friend during the week it occurred to me that the other kids were talking to their classmates, fidgeting in their seats, or turning their heads looking all around the room.  While Ryan's conversation wasn't appropriate for the situation, he was sitting there looking at the teacher, and listening to her comments and parents' questions.  He too wanted to participate in the conversation and upon impulse raised his hand and said what was on his mind.

One morning this week when the kids got on the bus the driver asked me why Ryan screams so much.  I was taken aback.  I had no idea he screams on the bus but I can certainly picture him speaking loudly and his ADD taking him in and out of multiple conversations with different people.  He usually gets off of the bus extremely hyper in the afternoon and sometimes he tells us stories about kids on the bus.  One of the stories involved boys sitting in the seat behind him and they were taking their lunch box and hitting him on the head.  I can picture him laughing and joking with them thinking that this was a fun thing to do, but meanwhile the boys were doing it to make fun of him or because he was being annoying.  I know I can't protect him all of the time and he needs to learn how to deal with these situations.  But it is so hard to know the right time to intervene and when to butt out.  But now having the bus driver say something to me was a reality check as to just how much Ryan must stand out to other kids.  I apologized numerous times during my one minute conversation with the driver.  I explained that Ryan was Autistic and had some social and communication disabilities.  When I questioned if the driver was given Ryan's IEP to look over, I was shocked that he said no.  I thought all school personnel interacting with a particular child were required to be made aware of these things.  I felt so sad and worried for Ryan.  I went in the house and cried.  That afternoon Ryan came off of the bus with stars written on his hands in marker.  He said two girls on the bus drew them.  He couldn't tell me their names but he said they were his "best friends". It took several rough washes to remove the marks.  I explained to him that he shouldn't let anyone write on him.  Last year we didn't encounter any issues with the bus, but there were several different factors.  The ride from daycare to school took half the time than the ride from home to school takes this year.  Last year he attended half day so the ride back to daycare was with the Kindergartners only.  And the ride there with all of the kids the Kindergartners were required to sit in the front.  Now that he is in first grade he can sit where ever he wants.  Phil and I would prefer he sits in the front behind the Kindergartners. At the very least we need to have several conversations about our expectations regarding the bus with Ryan.  We will continue to keep you updated.

I asked Ryan if this picture of our family had Jack crawling already and he said that it was Helen.  Ryan continues to remember our Helen and include her in our family.  In order from left to right Ryan told me that he drew daddy, Jack, Ryan, mommy, and Julia, and Helen is walking on the ground.  The 6 is for six of us in our family.  So sweet!

DC

Week 104

Welcome to week 104!

This week started the spring season of soccer.  It was a great start to the season.  It almost turned into a disaster as Ryan was accidentally hit in the face with a ball just before practice started.  He was very upset and demanded that we go home.  He sat a few minutes off to the side and then wanted to join the group.  Last year this would have set him off and he never have rejoined the team.  This time, Ryan went to the parent that accidentally hit him in the face and gave him a hi-five!  At the end of the practice we had a scrimmage and Ryan scored a goal.  He was so excited.  At Saturday's game he did not score a goal but played a great game.  We are off to a good start and hopefully he will continue to enjoy soccer. 

Happy 10th Birthday in Heaven, Helen

Giving Helen a flower from Amelia.  Happy 10th birthday Helen.

Ryan's April Kindergarten project.

Ryan and Julia at Christening number 1 of the weekend!

Playing wrestling with the boys.

Mommy, Julia, and Ryan at Christening number 2!

Ryan letting Elaine know that he is cheating!

 Cheating at Tic Tac Toe!

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