Almost 9

It's been awhile since I last made an entry here on this blog.

It's such a wonder how time flies... even when there are challenges.  Remy has been such an angel, a gem.  He has provided me with so many opportunities, so much encouragement to be better than I am.

He was diagnosed just before the age of 3... this was almost 6 years ago now.  For more than a 2 thirds of this life, he's lived with autism.  Or shall I say, he's had the label of autism?

I have certain seen the development, the "regression" and the development.  

At this point, Remy seems to express fewer verbal sounds than he did last year.  However, he has come to use his iPad with a program called Proloquo to Go.  he started it last year, and in one year's time, he really seemed to start using it more consistently asking for food, for his shoes, for playing...

Then the iPad went into mud... wet mud.  It's like his "voice" has been turned off.  Fortunately, he has his first iPad.  The only thing is, it's not programmed with all the words that he had with the mini one.

Remy's latest progress:

- using iPad as his communication device
- more   eye contact
- seems to be calmer at times
- eating almost anything (we let him off the gfcf diet) - and now we're challenged with a heavy boy - something will need to change again
- sharing food with others
- continues to nod and shake his head
- extremely high pitched forceful "ehHH|"s from the back of his throat
- ripping less bags

I am looking forward to celebrating his birthday.  Not sure what we'll do... but every day, I am grateful for his presence, his gift to this world.

THANK YOU for participating in Remy's 7th Birthday Fundraiser

What a month April was.

Every April 2nd is International Autism Awareness day.  Remy was diagnosed with Autism in April 2009.  Ironically, Remy's birthday is also at the end of April. 

Every year we receive so many presents and birthday wishes for Remy.  Thank you all for your thoughtfulness and generosity.  Thank you for helping us spread this video.  If you haven't seen it yet, just click below :)  Feel free to share with anyone it may inspire.

 

Update

Since sending out my email with Remy's birthday video present, the video has had 144 views!  Thank YOU for making this happen.  With each passing day, the number is views increase, and I am encouraged by it.  Thank you for taking the time to watch and share.

To date, Remy has received $65 from three donations via PayPal, a $50 cheque in the mail and $120 dollars in cash from family.  Thank you so much.  

Remy was actually sick in bed for the day of his birthday last week, but he did get out of bed to eat the strawberries off the side of his special no grain cake.

What we are fund raising for

These are some estimated expenses for Remy's care in the next 6 months.

Osteopathy - $120 per session (estimated to be once a month for the next 6 months) = $720

Connecting with Autism (CWA)
- Online Training Course - $150 (for the month of April 2013) or $225 (regular price)
- Growth through Play System (GPS) Evaluation and Reports, and Sensory Processing Evaluation and Reports - $280 (this includes a 1 hour consultation)
- Ongoing going consultations - $120-$150 per 50 minute session (once every 6-8 weeks, so that $150 x 3 = $450 for the next 6 months ) = $880 USD

RESPITE
  - This one is HUGE
  - $416 ($16 for two hours for the next 26 Fridays)

A Juicer as part of his GAPS diet for detoxing.
  

The Benefits of Giving with an Open heart

Do you want to give to a good cause, but just haven't done it? Do you feel that what you can comfortably contribute is too little or insignificant for to reach the goal of the fundraiser? Are you putting it off until it's more “convenient”? Do you feel that the cause resonates with you, but that you're embarassed about how small you can contribute?

I want to tell you that if a cause resonates with you, it's inspiration. And when inspiration knocks, act on it, or it will pass.

I used to think I didn't have much to give so I wouldn't. What I did feel that I could contribute seemed so little that it would be no use to even donate that. I was embarrassed and felt I would judged for giving so little so instead I would not give.

Fast forward many years and through many life's lessons, I've learned that I have a lot more to offer than it seems. No amount of contribution is insignificant. In fact, I want to demonstrate how our thinking and actions impact the way things work out.

My friend Jackie was fundraising for $20,000 just recently to go toward  bringing her son to the Son-Rise Program®  Intensive at the Autism Treatment Center of America. I saw her family's fundraising video, and I was inspired! I've learned from Joe Vitale that I should give my money to who inspires me. Now, in the terms of cash, I am limited at the moment, but, I could afford $20. Now looking at 20 to 20,000 seems quite small. But this is how I thought

I am inspired, and I want to donate toward this cause. I feel that I can give a token donation of $20. This donation represents my desire to help reach their goal of $20,000. Along with my donation  I am sending my wishes that their donations will multiply. I have faith that with enough people contributing what they CAN , this family WILL reach their goal.

Jackie's family surpassed their goal a few weeks ago!

Now on the flip side, I could think (as many people may think):

“that is a huge goal. My $20 means nothing. I can't help them out.” Now imagine that 20 people have this same thought... that's $400 dollars added together!

I want to wrap up this post the story entitle “Stone Soup” that I heard when I was a child. This story really resonated with me, and I am retelling it and explaining what I learned from it to you.

So as I remember the story, a stranger comes into a village during hard times. People are poor and there is little food to eat. The stranger is hungry, and so he knocks at people's doors asking for food. He is turned down with responses that there is not enough food to share. So the stranger sets up a pot, starts a fire and puts in water with a stone.

Soon people were wondering what was going on. They started coming out to see what the stranger was making. “I'm making stone soup,” he explained. Then he tasted it.

People asked, “how is it?”

“Mmm. Not bad,” he responded. “Oh, but it would taste even better if it had some onions.”

Someone in the crowd volunteered some onion, and the stranger added it to the pot.

“How is it now?”

“Mmm, it's much better.” Then he thought, “it would even taste better with some carrots.”

Someone volunteered carrots.

“How is it now?”

“Mmm. Great! Now if we only had some celery.”

Someone volunteered celery.

“This soup is getting really yummy. But it would be so much better with some zucchini .. some tomatoes... potatoes...”

You guessed, it. For every vegetable, someone in the crowd was able to offer to the pot.

At the end of the story, the whole village was able to enjoy the wonderful soup that everyone contributed to. It started with one person putting in a stone. Then one addition of an ingredient inspired the next ingredient until finally, there was an abundant pot of soup for everyone to enjoy. 

So, all this is illustrate that your contribution, no matter how small you think it may be, is significant and is appreciated!

Lots of love to you!

HAPPY BIRTHDAY, REMY!

Every year for the past 3 years since his diagnosis, Remy has been consistently sick (like fever, vomiting, low energy, in bed, red... just out) on his birthday.  As well, he has consistently pushed his birthday cake (that I make for him and his special diet) away.

This year, for his 6th birthday, I decided to take a chance and plan him a birthday PARTY with the family and friends (our amazing volunteers!) Remy is closest to and most familiar with.

A week before his birthday, Remy started sneezing, and wiping a very runny nose all over himself... I think we were all hoping he would recover and be fine for his party... and it was excellent wishful thinking, because he was FINE for his birthday!  Thank you so much for believing we would have a healthy celebration for the little guy.

How many people came?  
Would you believe that including Remy we were 14 people:  Nana, PauPau, GongGong, Auntie D, Auntie G, Mommy, Daddy, Sister, Mary, Tara, Jo... and Tina and Jo's husband by cake time.

Over three years ago when we threw our last party for Sister's 1st birthday, Remy would have a blank expression when people arrived.  In fact, he would take my friend Dana's hand and take her into his room and close the door.  He didn't seem to like all the people in the house.  He didn't seem to care about singing "Happy Birthday", candles, presents... he was in his own world.

Celebrating Remy in Our World
He's come a long way into our world, celebrating with us now!  I am happy to announce that he thoroughly enjoyed his 6th birthday... he played in the backyard, ate with everyone else eating, danced about with his sister, looked at people, ripped paper, ran to his lit-up birthday cake, sat down in front of it when I placed it down on the table, let us sing "Happy Birthday" to him and even tried blowing out the candles after!  Of course he sampled the frosting (something he hasn't done since his 2nd birthday) while the cake was in reach :)  Then, after the cake was sliced and served to him by his very loving Auntie D, he ate it with a fork!  Then after the was done, he ate TWO more pieces of cake... eventually resorting to using his bare hands ;)

Lots of food for everyone!

Remy eating watermelon... and more and more watermelon balls.

Remy, while ripping, turns chair toward the lit-up birthday cake.

Remy gets off chair to follow lit-up cake to table!

Lit up gfcf birthday cake in front of Remy.

Remy sitting in front of cake and sampling frosting.

Remy receiving some loving help blowing out candles.

Daddy holding Remy back from frosting as we take a family photo.

Remy eats his cake!  Two more pieces to follow...

Opening presents.

More presents and more cake...

Gotta love that wrapping paper... so rippable!

Playing with  circus tent from Auntie D.

Take a pic with Tara and Tina

Tina scoops up the 78 pounder!

Remy is up to Mommy's underarms!

Thank you everyone for coming to celebrate Remy whether via Internet, telephone, thought or mail.  I am so grateful for such a wonderful celebration of my child who is growing!  Thank you, Remy for helping me to continue to grow :)

Enjoy your day,