Pure Sweetness!

So our little Ruby just LOVES animals! Her babysitter Jen has the cutest little doggie named Tucker. When we pull into Jen's driveway in the morning,  Ruby will often start calling out his name before we even get in the door! It sounds more like "Tut-er" but hey, with a name like Tucker it could be worse!

I am so glad Tucker loves her right back, because Ruby is often rejected by our two cats, Ruthie and Marmie...although they are slowly coming around. They are just so busy you know, lying around and sleeping all day to have time to play!

Here are some pictures Jen sent me that are just way too cute not to share!

And my personal favorite....

Perhaps a dog is in our future??


Ok, must finish Christmas wrapping. Luckily my angel in laws ( that is what I am going to start to call them ) took the kids for the night last night so we are just about ready!

Merry Christmas Everyone:)
xo

Written in the Sand!

It has been weeks since my last post...we have been up to our elbows in poop around here. We think that Porter either had a virus or was adjusting to the new probiotics..or maybe a bit of both. It went on for just about two weeks...anyway, I hate to say it in case I jinx it, but I think it's over....

And really, after the events of this past week I checked myself again.

We are here.

Bless the people of Newtown, Connecticut.

___________________________________________________________________________________

And today we had two great moments.

The day started with a semi-solid poop. Woo hoooo!

Then when I went to pick up Porter from school I couldn't find him. Now before you think he was lost..nope, he wasn't lost at all. He was there, sitting at the sand centre, playing with a friend. She said to me " I'm playing with Porter". " Yes, you are" I said as my heart filled with pure love.

The Results Are In!

This is my biggest fear! Because it is totally possible , I deal with a lot of poop on a daily basis... I obsessively wash my hands, but sometimes I feel like I can still smell it. Anyway, when I saw this I just had to share !

So speaking of poop....remember how we sent Porter's to Chicago to get analyzed? Well, we got the results last week and I thought I'd share, I know how you must be just dying to hear all about it :)

It was being tested for yeast and bacteria levels. The results showed that his yeast levels are fine. Now, most people would probably be happy to hear that, but I'll admit I was a little disappointed. Why? Well, I have been reading about how many kids with autism have a whack of yeast in their bodies and when it is treated the results can be amazing! So to be honest, we were hoping he was full of it!

Now having said that, his bacteria levels are definitely off. I didn't quite follow all of the biology lingo, but basically there is a mixture of good and bad bacteria in all of us, but most of us have the proper amounts of each. Porter does not. He has too much bad stuff and not enough of the good stuff. His numbers were supposed to be 3 or 4 and many of his good bacteria levels were at a 1.

So next step, stronger probiotics! Then after a month we have another phone visit to see how things are progressing and we will go from there.

Chat soon!

Photo Shoot!

So last month was Ruby's 1st Birthday so we decided to honor the occasion by getting some family photos done! We also invited Mark's parents to join us. Getting pictures done with the grandparents is something I had planned on for some time but just never got around to it for various reasons. After my Dad passed it was one of my biggest regrets. So if you are thinking about having special family photos taken but have been putting it off , take my advice and don't wait! We did bring did my Dad's RUBY birthstone ring as our little way of having him there with us...although I'm sure he was there with us along with my mom.

Here are a few of my favorites taken by the very talented and very patient..Barb Hickey!

Now, if I could just keep Porter from removing all the pictures off the walls, I could put these up! 

 

The Autism Revolution

I am late getting to this but better late than never...

Last month Mark and I were able to attend The Autism Canada Conference in Moncton. I was pretty pumped about it being so close, most things I read about are happening all over the world so when I saw Moncton, I was like...Moncton, we can go there! Thanks again to Auntie Carol who stayed the entire day with our little mess-makers. You can read more about the conference here.

We had high hopes for the conference but it wasn't quite what we expected... a lot of theory and not enough practical information. But the highlight of the day was definitely listening to Dr. Martha Herbert speak. When I saw that she was presenting I kept thinking..where have I heard this name before? And then it hit me, she was the author of a book my mother in law had bought that I was in the middle of reading! How cool is that?

Here is a link where you can read more about her and the book "The Autism Revolution".

http://www.autismrevolution.org/

She is a brilliant woman, I mean the lady is a pediatric neurologist and a brain development researcher at Harvard! Basically she views autism as a medical condition that can be treated. Otherwise we wouldn't be hearing about all these amazing stories of recovery...it made a lot of sense and made me even more excited about an appt. we had made for Porter with Dr. Bryan Rade.

Dr. Rade is the only DAN doctor in the Maritimes. DAN stands for Defeat Autism Now and the DAN physician approach to autism is biomedical, meaning that it views ASD as a condition characterized by biochemical abnormalities that can be addressed through appropriate treatment, leading to changes in clinical presentation. ( I took that directly from his website here )

The appt was set for Oct 30th. We were already heading to Halifax for Ruby's 1 year visit to the IWK. For anyone who may not know, Ruby is part of a research study for siblings of children with autism. There is a 1 in 5 chance that siblings will also have autism and this study is designed to give early interventions to any siblings who are showing signs. Miss Ruby did wonderful and she couldn't have been happier with all the attention! We will be getting an official report in the mail in the next few weeks so I will share more of their observations at that time. 

So we decided to book Porter's appt with Dr. Rade  for the same day seeing as we would be there anyway. It made for a long day, but it was worth it. This guy was awesome. He said many people view our children with autism as the new "canaries in the coal mines". Apparently years ago they used to send canaries into coal mines before the miners to see if the toxic levels were too high to survive. Our children with autism are our warning signs that something is going on in our environment, but are we listening?  Have I ever shared the latest statistics? 1 in 88. In the 1980's it was 1 in 10, 000. That simply cannot be explained by better diagnostic tools alone. It just can't. But back to our visit...

We left feeling very hopeful. Our first step - magnesium. "The Department of Family Medicine, Pomeranian Medical Academy, states that magnesium deficiency can result in disruptive behaviors. When dealing with autism spectrum and other neurological disorders in children it is important to know the signs of low magnesium: restless, can’t keep still, body rocking, grinding teeth, hiccups, noise sensitive, poor attention span, poor concentration, irritable, aggressive, ready to explode, easily stressed." Hmmm..yep, that sounds about right.

We also sent some poop to Chigaco! Yes, that's right poop. Fed Ex will deliver ANYTHING! There it will be tested for yeast and bacteria levels. I am anxiously awaiting the results! Once we get those, we will go from there. But basically we are going to get Porter's body working to the best of it's ability step by step. And how many times have you heard..healthy body - healthy mind? It makes a lot of sense when you think about it.

 He also said we should continue the gluten free- casien free diet and cut out as much refined sugar as possible. He said that putting him on the GFCF diet will definitely help but every time we put sugar   into his body, it's kind of like we are squirting gasoline on the "fire".  A lot of kids with autism also have a "leaky gut" which basically means that there are holes in their intestinal walls which allow toxins , bacteria and other nasties to be absorbed . Did you know that almost 80 % of our immune system is in the gut? I truly believe that if we can heal Porter's belly, we will see a huge improvement in his language and behavior.

So we are doing our best to get rid of refined sugar, but it's a challenge. It's pretty much in everything! And it's good. I shouldn't tell this story but I will...last week I had to take out my winter jacket because the temperature has seriously dropped around here and I found a half a bag of skittles in there from last winter. So of course I ate them. And you know what's scary, they tasted perfectly fine. Delicious even! But even as the fruit flavors were exploding in my mouth, I felt guilt for eating pure garbage. I mean anything that tastes the same after being opened for a year is not food! But yet, I ate it? I am such a work in progress, but that's a whole other post, actually, that's a whole other blog!

Chat soon!

I. B. Happy!

Sooo, it's official. I have been waiting to see it in writing before I announced it....

They have filled the autism consultant positions and that means that our boy will get IBI! ( Intensive Behavioral Intervention ) And that is exactly what it sounds like...20 hours a week of therapy that is specifically designed to focus on Porter's needs.

It's what we have been waiting for. It feels a bit like Christmas in October!

Hope you all had a great weekend!

Firework!

 
Prepare to be touched. This video brought me to tears. And I don't mean the soft, trickle down tears...I mean the sobbing , hold your breath because if you let it out you'll emit a sound that will scare the kids kind.

Tune in Sunday night on The Comedy Network as Jon Stewart hosts " The Night of Too Many Stars". Here is a preview of what you will see..


http://now.msn.com/jodi-dipiazza-an-autistic-girl-who-plays-piano-sings-with-katy-perry




I have heard that song so many times before and have often thought of our boy ....listen to the lyrics.

Do you ever feel like a plastic bag,
Drifting through the wind
Wanting to start again?
Do you ever feel, feel so paper thin
Like a house of cards,
One blow from caving in?

Do you ever feel already buried deep?
6 feet under screams but no one seems to hear a thing
Do you know that there's still a chance for you
'Cause there's a spark in you

You just gotta ignite the light, and let it shine
Just own the night like the 4th of July

'Cause baby you're a firework
Come on, show 'em what you're worth
Make 'em go "Oh, oh, oh"
As you shoot across the sky-y-y

Baby, you're a firework
Come on, let your colours burst
Make 'em go "Oh, oh, oh"
You're gonna leave 'em all in "awe, awe, awe"

You don't have to feel like a wasted space
You're original, cannot be replaced
If you only knew what the future holds
After a hurricane comes a rainbow

Maybe your reason why all the doors are closed
So you could open one that leads you to the perfect road
Like a lightning bolt, your heart will glow
And when it's time, you'll know

You just gotta ignite the light, and let it shine
Just own the night like the 4th of July

'Cause baby you're a firework
Come on, show 'em what you're worth
Make 'em go "Oh, oh, oh"
As you shoot across the sky-y-y

Baby, you're a firework
Come on, let your colours burst
Make 'em go "Oh, Oh, Oh"
You're gonna leave 'em all in "awe, awe, awe"

Boom, boom, boom
Even brighter than the moon, moon, moon
It's always been inside of you, you, you
And now it's time to let it through-ough-ough

'Cause baby you're a firework
Come on, show 'em what you're worth
Make 'em go "Oh, Oh, Oh"
As you shoot across the sky-y-y

Baby, you're a firework
Come on, let your colours burst
Make 'em go "Oh, Oh, Oh"
You're gonna leave 'em all in "awe, awe, awe"

Boom, boom, boom
Even brighter than the moon, moon, moon
Boom, boom, boom
Even brighter than the moon, moon, moon


Porter, you ARE my little firework. I love your magnificent colours ...and you will never have to show me what you are worth. I already know. xo

Ruby's Birth Story

So today our little Miss Ruby Two Shoes turns 1 year old! I decided that on this day I would share her birth story. Like I have said before, I hope to be kicking around a long time, but if I have learned anything in this life it is that tomorrow is never guaranteed.  Ruby, when you are older and want to know this story, I want you to be able to hear it, anytime you want....

I'd like to say it was all rainbows and lollipops, but not quite, although when you did finally arrive, it was pure love. No other way to describe it.

First, you came a little early. You were a scheduled C-section ( why you ask??  Your brother weighed 10lbs 6 oz , so I wasn't taking any chances:) and you were supposed to be born Oct 12th. Your actual due date was October 19th, but because you were a C-section they like to schedule the birth one week early so mommies do not go into real labour..hmmm..yeah, that was the plan.

However, you decided that you wanted to come out 2 days early. The night before you came I asked your Daddy to rub my back, you see, you were getting just a little heavy and my lower back was trying it's best to take the weight, but because I was a couple pounds overweight , okay, maybe a few...my back just wasn't holding up very well:) So he gave my back a nice deep massage ( come to find out later, that can induce labour.. OOPS!)  Hours later, you woke me up! It was time for you to make your way into this world ! It was a Monday, October 10th, Thanksgiving Day!

I wasn't prepared, which sounds funny because I had gone into labour with your brother so you would think I would have known what to expect. But you were different. I first felt the contractions around 4 in the morning . I thought I would have plenty of time to shower and pack up my things before we went to the hospital but about half way through the shower, the pain got worse, much worse. You wanted out! Your brother was asleep so we needed to call Auntie Lisa to come watch him while we went to the hospital. (Nana and Pepe were in Moncton because they thought you were coming on Oct. 12 just like we did!) Your Auntie Lisa and cousin Kenzie arrived and we were on our way. I was getting nervous at this point because the contractions felt fierce and close together...YIKES! Don't come yet baby Ruby!

We got to the hospital and I felt some relief that at least you were not going to be born in the Corolla! And I think your Daddy was feeling some relief too:) He is pretty handy, but delivering a baby, I don't know...

Anyway, back to the story. So the nurses hooked me up to the special monitor to make sure this was real labour. It didn't take them long to figure out that this was the real deal! So the next step was waiting for Dr. Farag and the anesthesiologist to arrive and get you out. It felt like days but in reality it was just a few hours and then in an instant, you were here. We knew your name already, Ruby Mae Mary. You were perfectly perfect. Ruby because we LOVED the name and it also happens to be your Grampy Arsenault's birthstone, Mae for Mark and Rae put together and Mae is also your Great Nanny MacNeill's middle name. Mary for both of your grandmothers' middle names AND also your Great Grammy Arsenault's middle name.

You were a big girl, not quite as big as your big brother, but a healthy 9lbs 6oz!

I couldn't stop looking at you. Daddy couldn't either. We loved you nose to toes.

There is a little more to this story, but I think you knew it was your birthday because you wanted to stay up late and now I'm sleepy too. SO let's call this Part 1:)

Happy Birthday sweet girl. You are always loved.

xo

Fun at School!

   So anyone that has been following along might remember that Porter's preschool sends us "learning stories" through email. We LOVE getting them but can't usually share them on the blog because there are other kids in the class and I don't have permission to use their photos....BUT last week we got not one, but TWO stories all about our boy! Sigh..this boy, he fills me up.

I can't seem to write underneath my pictures today, so I will say Happy Thanksgiving right here! Last year on Thanksgiving Day our Miss Ruby was making a mad dash into this world! Yep, this week our girl turns 1!!!

So very much to be thankful for.
:)Rae

Half-time!

Remember when you were a kid and it always seemed that you were waiting for something and the days seem to drag on and on and on and you thought you would NEVER get your driver's license?

What happened to those days?

And can someone PLEASE tell me where September went?

For anyone that doesn't know I decided (at the absolute last minute) to work half days this year.  I am doing Reading Recovery in the mornings and I am finished work by noon! I have been meaning to post my news but this month..seriously..where did it go?

So that means I get to spend my afternoons with Little Miss Ruby Two Shoes! ( her new nickname thanks to my friend Laura ). And when Ruby wakes up from her nap, we go pick up her big brother Porter! We are keeping Porter in preschool for most of the day because he needs preschool. He needs the structure and the social time and the boy LOVES to go! You should see him in the morning when we say it's time to go to school!  He squeals with delight and runs to the door to put his shoes on!

Little Miss Ruby spends her mornings making friends at her new "school".  We feel so fortunate that she is being cared for by someone who just loves her to bits! Thanks for taking such great care of her Jen! Here is a picture of Ruby's new friend Max. Yep, that's right... Max and Ruby! What are the odds? 

Chat soon
Rae :)

Happy Birthday

Today my mom would have turned 63 years old. I hope she is riding horses with my Nan.

Happy Birthday Mom. Love and miss you always.

Beanie xo

(yes, that was my nickname:)

Life2q]'''o[ and Mum Mums

I happened upon this quote recently from Gilda Radner.

“I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious Ambiguity.”

It goes against who I am, but I love this. I'm trying, dear Lord, I'm trying.

------------------------------------------------------------------------------------------------------------------------------

Yesterday while Porter, Ruby and I were waiting in the car I gave Ruby a mum mum to help keep her happy ( anyone not familiar, it is basically a rice cracker for babies). In the absence of anything else, Porter reached out wanting the other half. He finished it in seconds and then I heard it:

"Cacka, cacka."

Thank God I had another one in my purse.

"YES, sweet angel you can have a cacka! "

I wasn't expecting it at all. How delicious it was.

Up until this point, he had never spontaneously requested a cracker before. Sure, if I had him at the table and was dangling one in front of him, he'd say it..but never before just on his own.  From the backseat, without even having it in his visual frame of reference!

Big day.


:) Chat soon, Rae

The Cat's Meow!

So I have been neglecting this blog and feeling pretty guilty about it. I've decided that I don't need to feel any more guilt. All stocked up here.

So, it occurred to me that I don't need to write a book every time I post, it could just be a quick little story about something funny that happened or maybe something new that Porter or Ruby have learned.

So that is today's post.

Miss Ruby has decided she wants to start talking. She has been babbling for months but one never knows if "ma ma ma ma" is actually Mama or is she just figuring out sounds? But this past week we are sure we heard "kitty" . She was chasing Marmie around the house and saying "ki-ki". I mean, using the word in context! But wait, there's more! When the cat meowed, she did too! It sounds more like "ow" but it is ADORABLE!

Not sure what Porter thinks of it, but soon after he went into her room and started stuffing her clothes in the diaper genie. I won't analyze that too hard:)

Enjoy this lovely long weekend!

Rae

Ups and Downs

Sometimes it is hard not to let bitterness invade your soul. I try very hard to see the bright side of things, I really do, but some days it's hard. I'm still trying to come to terms with the fact that my Dad is no longer on this Earth. The sadness comes in waves. It knocks you over at times, but you get up and ride it out.

You have to... you have no choice.

And then you deal with more of life's punches....

We recently found out that Porter will not be receiving IBI therapy in September like we had all hoped and prayed for. Apparently there are two vacant autism consultant positions and until they are filled, my boy waits...and waits...and waits.

I'm so effing tired of waiting. ( I had typed the real f word but then I felt guilty, someday Porter and Ruby will read this).


This is all I had typed last night and then I went to bed. It's funny how a new day can bring a new attitude.....


Sometimes it just takes a little perspective.

My boy is healthy. Yes IBI feels a bit like the "cure" that is just beyond my reach, but really, he is healthy. AND happy.

And this morning I noticed something. I called his name and he came to me. When Porter was diagnosed in March that was one of the first observations the psychologist noted that Porter was lacking as he gave us his findings. March is not that long ago.

I can't even say for sure how long he has been responding to his name. That is the thing with autism, the improvements are subtle and they sneak up on you. But yesterday marked the one year anniversary of his trip to our pediatrician. God that day. I'll never forget it but that's a whole other post...

 I started thinking about every thing he has learned in this past year. It's too much to name. It really is! Here are my top 10 highlights:

1. He looks us in the eye. I mean the boy will press his forehead on ours and look us right in the eye. It's not even something we work on anymore. Maybe it seems small to some, but not for us.

2. He is requesting things other than freezies! It's not a huge list...the boy knows what he wants...but it's growing. We've heard juice, ice cream, candy, push ( on the swing) , squish ( he LOVES being squished between pillows) , spin and open to name a few...I'm sure there's more but who can think in this heat?

3. He loves to cuddle. In fact just this past month he has become such a little lovey! Especially in the morning. I can get a whole episode of Thomas in with him tucked right beside me . It is during these times, everything in the world is ok. ( p.s. I should note that in the last month we have started "brushing" him, it's a new part of his sensory diet . We also took him to a naturopath who prescribed some new supplements- Vitamin b12 and Omega 3 and a new probiotic. I'll talk more about this soon but I know they are both helping).

4. We can walk to the car without him taking off to the road. * BONUS - he can climb in his own car seat!

4. He started preschool and he can sit quietly at a table with the other boys and girls during snack!!! This was one of the reasons we started preschool , so that when it came time for kindergarten he would be more ready. I thought it would take MONTHS to get him to sit at a table. I hate when I underestimate him. He LOVES going and when I pick him up he looks up and smiles at me. It continues to melt my heart on a daily basis.

5. He is starting to really love Ruby. I can't put into words how I know, I just know.

6. He has more words that I could list. They are still mainly prompted, but they are all stored up there  in that fascinating brain of his!

7. He plays with toys other than trains. And when he plays with his trains he is not just spinning the wheels ( although he still loves a good wheel spin now and then!)

8.  He pees in the potty..we have even had 3 Code Browns in the past week! He is still not requesting to go, but if you pay attention you'll know it's time! ( I won't share what happens if you miss his signals, I don't want to embarrass the kid:)

9. He listens better. Like for example if he empties a bucket full of toys and I say "pick up", he will. Not that long ago we had to physically take his hand and make him pick up the toys. This is still an area that we are working on, like for example tonight he ran up the stairs with a tea light holder.  I knew he was going to throw it, I said "Porter NO!" and he took great delight in biffing it down the stairs. (I said he listens "better" not ALL the time.)

10. We went to Shining Waters last week. Last year, we talked about it but we both agreed that he wasn't quite ready. This year we felt confident enough to give it a whirl! Big day!

We only stayed a little over two hours ( we wanted to make sure the day ended on a positive note) and there was some running...but it went well. Really well. I was pleasantly surprised with how nice it was. A little expensive, but lovely.

Here are a few pics from our day:)

We all had so much fun, I think Ruby had more fun that anyone! She is an absolute little fish! She LOVES, loves, loves the water!

So I guess what my post is about today is reminding myself yet again of everything I have to be grateful for in this life. It's a lot. Like a whole bunch.

Enjoy the rest of your week everyone!

A Letter from Heaven

For anyone that has been following along since the very beginning you may remember that I said writing can be like therapy. Well, this would be where I would lie on the couch and let it all out.

Today is my Dad's birthday. He would have been 64 years old. A couple of weeks ago I was wondering what I was going to get him. He was hard to shop for. I often went to the old faithful, Mark's Work Wearhouse gift card. Not always, but often. You'd think he would get bored of that same old gift, but I swear, he would open the card, put on a huge smile and say "great, just what I needed" and he seemed to genuinely mean it. This past Father's Day that is what he got, yet again. He arrived the next week with two shirts in hand and said "which one do you want to buy me"? with the biggest grin. I couldn't choose. So he said he would pick, but I can't remember which one he picked. And you know that shouldn't be a big deal, but when we went to his apartment to start the difficult task of cleaning it out, I saw those shirts, hanging ever so neatly in his closet. It killed me that I couldn't remember which one he picked.

I still can't believe it's real.

I go over and over in my mind the last time I saw him, he looked so great. I mean really great. I even told him so. I gave him a hug with an extra squeeze. I never do that. But I did this time. God, the things you hang onto when you lose someone.

 I gave him an extra squeeze.

Did he know what that meant? Did he know that it meant I had forgiven him for not always being there when I needed a Dad? Did he know that it meant that I could see the great effort he had put into being my father over the past several years? Did he know that when he looked at my children with such pure love that it completely cleared my heart of any bitterness? I hope so. I really hope so.

It's hard to describe the feeling of such a loss. Just knowing that there was someone on this earth that loved you unconditionally, that loved your children the same. Someone that you knew had your back, always. And now they're gone from this earth, so suddenly. It will change who I am. I know this for sure.

Luckily I have faith in something else after this life. I believe in Heaven, I honestly do.

After my Mom passed away in 2006, my sister and I were cleaning out her apartment. We were putting several old papers into a bag when the poem "Safely Home" fell and landed on the floor. If you don't know it google it, it is beautiful. And I was convinced, and still am, that that was my mother at work letting us know that she was ok. It was so comforting.

Well, it has happened again.

As I was cleaning out Dad's papers the other day, I found this poem. It was on the back of a pamphlet from the East Prince Palliative Care Memorial Service which he must have attended to remember my Uncle Robert who passed away almost 3 years ago. This pamphlet could have easily been missed , but of course Dad made sure I found it. It is called "Letter from Heaven".  ( This is for you Norma) xo

To my dearest family,
Some things I would like to say,
But first of all, to let you know
That I arrived ok.

I’m writing this from Heaven
Where I dwell with God above,
here there’s no more tears or sadness
There is just eternal love.

Please do not be unhappy
Just because I’m out of sight.
Remember that I’m with you
Every morning, noon, and night.

That day that I had to leave you
When my life on earth was through,
God picked me up and hugged me
And He said, I welcome you.

It’s good to have you back again
You were missed while you were gone.
As for your dearest; family
They’ll be here later on.

I need you here so badly
As part of my big plan.
There’s so much that we have to do
To help our mortal man.

Then God gave me a list of things
He wished for me to do.
And foremost on that list of mine
Is to watch and care for you.

And I will be beside you
Every day and week and year.
And when you’re sad,
I’m standing there to wipe away the tears.

And when you lie in bed at night
The days chore put to flight
God and I are closest to you
In the middle of the night.

” When you think of my life on earth
And all those loving years,
Because you’re only human
They’re bound to bring you tears

But do not be afraid to cry
It does relieve the pain.
Remember, there would be no flowers
Unless there was some rain.

I wish that I could tell you
Of all that God has planned,
But if I were to tell you,
You would not understand.

And to my many friends trust,
God knows what it best.
I’m still not very far away from you
I’m just beyond the crest.

And now I am contented that my life,
It was worthwhile.
Knowing as I passed along the way
I made someone smile.

When you’re walking down the street
And you’ve got me on your mind,
I’m walking in your footsteps
Only half a step behind.

And when you feel that gentle breeze
Or the wind upon your face,
That’s me giving you a great big hug
Or just a soft embrace.

And when it’s time for you to go
From that body to be free,
Remember, you’re not going,
You are coming here to me.

And I will always love you
from that land way up above.
I’ll be in touch again soon,

P.S. GOD SENDS HIS LOVE!

Ruth Ann Mahaffey
Author of “Letter From Heaven”
© Copyright 1998-2001

Happy Birthday Dad. I hope you are celebrating 64 with style tonight. And thank you for being my father. I am so proud to have your blood running through my veins. These past couple of weeks I have learned even more about my family, of the people they are. I am blessed, truly blessed.

And I also want to thank each and every one of you who helped us get through this, who are still helping us get through this.  Thank you.

Love, Raelene

Shame on you 50 Cent!

I don't usually blog on a Sunday morning, but today I have some extra time. Porter and Ruby had a sleepover at Nana and Pepe's so I am just leisurely typing, nobody is crying or into something they shouldn't be...and sniff, sniff..what's that smell? I don't know, but it's NOT poop! 

Since finding out Porter has autism( and even before) I have found myself wandering online, stopping by at various blogs from time to time. I don't always intend to go, but I do a lot of googling you see( remember I have my PhD in googleology:) and often it will bring me to a blog. Today I happened upon a blog that brought me to this letter written by Holly Robinson Peete. Apparently 50 Cent ( the famous rapper for anyone who isn't familiar) decided to bully someone by saying they "looked autistic".  You can read her letter here that she wrote in response to his ignorant comments:


http://www.hollyrod.org/huddle/dear-50-cent-3/


You know, this kind of thing used to bother me, but now it makes my blood boil!

We have all been witness, or perhaps in your past , even been part of this kind of thing. We have all heard the "jokes"and I'm sure we have even used the "R" word now and then. But I think we are better now. And to quote Oprah or is it Dr. Phil? "when we know better, we do better". We need to teach our children that it's not ok. It's never ok. And when everyone stops laughing, it will stop.

I wanted to stand up and clap after I read her letter. How wonderful that she is able to use her celebrity status to stand up for our children. But you know, moms and dads are famous in their children's eyes. We can be that voice that makes a difference too.

Might I add, if being autistic looks THIS handsome, wouldn't we all love to have a little in us, actually I think we do, but that's a WHOLE other post!

Enjoy this gorgeous day!

Chat soon!
Rae

Outdoor Fun!

Have I told you how much we love our backyard? 

It really has changed our lives.

The other day we took the bouncy house out to add to the fun! Here are a few pics from the day....

 

The slide is Porter's favorite part!

 

                                          Ruby was just happy to be in there with her big bro!

                                                          "hey...that looks fun!"

        When we came inside, Ruby was so excited she decided to stand all by herself!

This picture was taken a few days ago, she has taken a few steps since then. She will be running around before we know it!

Welcome to Holland

I came across this gem today. It was shared at one of our Professional Development days at school quite a few years ago, but the words spoke much louder to me today.

Enjoy!

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

                                      c1987 by Emily Perl Kingsley. All rights reserved


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


Isn't that a beautiful little story?

And I have no doubt that all parents feel like they went to "Holland" from time to time....  but it sure is a beautiful place with the most amazing people.


p.s. I don't find Holland slower paced at all!!! AND I don't know anybody who "brags" about Italy, they just talk about what a lovely place it is too:)


Chat soon,
Rae

Big Week!

 So last was a pretty big week for our boy! First, Porter's class went to see "The Lorax" at the movie theatre. When his teacher approached me about Porter going, I will admit I had my doubts.  Porter's not big on the sitting still stuff. But we both agreed it was a perfect time to try. I would drive him there and that way when we had to leave, I could just take him home. And it was a matinee so it was only going to cost a toonie for Porter to get in....I figured even if we stayed for 20 minutes, it wasn't like I was spending a fortune. Plus, the rest of his class was going, and darn it, he should too.

So we arrived and found our seats in the back with the rest of his class. It was about 10 minutes before the movie was due to start and we didn't have our popcorn and treats yet ( they were being delivered ). Porter didn't want to sit and he started making his signature "ticky ticky teeeeee" squeal sounds while trying to bust loose into the aisle. So thus began the workout of me picking him up and sitting him on my lap , him squirming out of my lap and repeat. This is when my heart starts to pound as I wonder what other parents are thinking. Part of me wants to stand up and say " he has autism, just so you know, it's very hard for him to sit still,  it's not that I am a bad mother". Or maybe they know he has special needs and they feel bad for me and that makes me want to stand up and say "hey, don't look at me with pity, my child is perfect just the way he is !" ( It's pretty clear, I have some issues I'm trying to work through huh? )

Anyway, the movie began and for a few minutes he thought it was pretty neat. There were cars zooming by on the screen and I'm sure he was captivated by their wheels. Then the glorious Kids Pack arrived, and that did it! Popcorn and skittles and juice with a straw! Enough to entertain him for practically the entire movie! Every now and then he would get out of his seat and play with his chair, but in his defense, he had never seen a chair that would bend like that! We ran out of food near the end and he was getting super restless. I decided that we were going to leave while things were still going well. By the time we got to the car the movie was letting out, so I say we pretty much made it the whole movie! Momma was proud to say the least.

But wait there's more! Last weekend Porter and Ruby had a sleepover at Nana and Pepe's. Nana tried putting him on the big potty and he peed! The past few weeks Porter has been showing more signs of readiness but we haven't had much luck on his little potty at all. In fact, before this week I couldn't even tell you the last time he went.

So the next day Mark and I thought we would try the BIG potty just for fun...and it worked! Let's just say that when he is on the big potty he needs to use his hands to balance and he doesn't get "distracted" by anything else. So needless to say, we were pumped! We gave him some candy and made a HUGE deal!  Well, looks like I will need to hit up the Superstore tomorrow because we are all out of rewards! I think we hit double digits of successful pees today! And it's only the first week!



Chat soon
Rae:)

Remember when?

This past week has seemed especially crazy...I guess that is why I have yet again neglected this blog. I always have the best of intentions to sit and write but the days get away from me, what with all the dishes and laundry and stuff...oh, can't forget those kids I have. They seem to take a bit of my time as well. he he 

Anyway, when I have weeks like this I find myself thinking back to the days before kids. And please, before I go any further, I wouldn't trade my life for ANYTHING, but every mother out there knows just what I'm talkin' bout. Every now and then you fantasize about a different time not so long ago. A time when Mark and I were DINKS ( double income no kids ) ahhhh...let me reminisce ( this is where the screen goes blurry and we go back in time).

I remember the days when.....

I could walk on the floor bare feet and not get food stuck to my feet.

I could sleep.

I could actually have a conversation on the phone without saying " sorry, could you hang on for a second while I get my kid off the counter".

I could go into the kitchen and actually remember why I went in there!

When I was at a hotel I'd worry I would sleep THROUGH breakfast, now I'm usually sitting waiting for it to start!

I didn't spend more than our mortgage payment at the Superstore.

I could sleep.

I could eat supper when it was hot!

Poop was not such a huge part of my life.

I could go rent a movie and watch the whole thing!

I wouldn't find Thomas the Train in my bed. 

I could go for a drive after 7pm.

I could sleep.

I did laundry ONCE a week!

I  could wear a fitted t-shirt. Lord don't get me started on this one....

I could watch those sappy commercials without bawling my fool head off.

I didn't want to pass out at 8pm from pure exhaustion.

I could sleep. I realize I keep mentioning that one, but it's a BIG one, HUGE.

I could finish a whole sentence without saying " wait, what was I just saying?" ( a direct result of above mentioned sleep deprivation)

My house was clean for more than 5 minutes.

I didn't have to cook 3 different meals at suppertime. Yes I know, that is MY fault which brings me to the next one....

I didn't live with guilt, constant guilt.

The toilet would not be plugged with a toothbrush and a toy boat.

I did not worry constantly. I mean every second. Right now I'm worrying about them. Really, my mind is wandering as I type.

Ahhh...it was a different time.



But now I get to see these faces everyday...

I might just be the luckiest person alive.

The love. It's all consuming. Frig, I love them....and my crazy beautiful life.

Rae:)

Pictures of Playtime!

 Those of you that have been following along know that last month Porter started preschool. Every Monday his teacher sends us an email with some "action shots" of things Porter is working on. I can't share the pictures of the other kids but this one was all about our boy! 

It made me happy - cry.

I had no idea how important this stuff is to parents until I became a mom.

We were super pumped that he was engaging in pretend play....but feeding a baby! Well, that almost sent me right over the edge! And you know,  he really has started to pay more attention to Ruby lately. She is relentless in her efforts to make him her friend. Every now and then, he stops and looks at her and sometimes a little smile appears on his handsome face. Soon enough they will be best buds. I can't wait.

Chat soon
Rae:)

Dear Time, Slow down!

I was watching my girl navigate through her little world today and even though I thought I was prepared for time to fly by quickly, I just couldn't believe how fast it is going!

                          Here she is with her Grampy when she was just brand new!



                    And here she is in her very first photo shoot ! ( She's around 6.5 months here)

Here is one more that was taken on Mother's Day ( the curious monkey was too busy looking around to smile for her photo shoot and she has a pretty awesome smile that deserves to be shared!)

I'm starting to want to savor her, like the last piece of chocolate in the box. I find myself snuggling into her little wee neck and squeezing her to bits! And I'm having mixed emotions when she does something new,  I hear myself saying "Slow Down Little Red Ruby"! ( that's her new nickname thanks to my friend Crystal:)

Sigh.


I just love her nose to toes!

Have a great weekend everyone!

The Fence That Love Built

On Monday our boy turned 3 years old! He got the best present ever...a new swing set in a new fenced in backyard built by the best hands around!

Before I was about to marry Mark I remember thinking how much I liked the sound of my new name...Raelene Richard...doesn't it roll off the tongue nicely? Well, I tell you, I have never been more proud to wear that name as I have been this past week. These people that I am blessed to call my family are the finest people you will ever meet. They spent more hours than I can count building our little guy this amazing new fence! We started last week when our friend Josh came over to dig the holes with one of his cool machines. A huge thank you to him as well, if we would have had to do that by hand, it would have probably taken a whole day!

Then the building began!

 Pepe and Nana...what a great team... and the heart of the operation:)

Uncle Phil, Uncle Chris and Nana hard at work:)




I was blown away at how quickly it started to come together. It didn't take long before it started to look like a real live fence!

Auntie Robyn and Uncle Phil ( Phil had just stolen the tool belt from Auntie Robyn, but she rocked it when she had it! )

More help arrived when Auntie Jenn came on the scene ....these two were here until dark finishing Porter's new swing set...stay tuned for pics!

Uncle Phil, Cousin Brandon and Uncle Brian taking some important measurements! p.s. Brandon, you blew us away with how hard you worked!




Later, Uncle Josh came back to help us with the gates!

It was huge job, I mean we were building a 250 ft fence! I thought it would be at least a week but not with Richards in charge! They worked around the clock and by Sunday it was done! And it was fantastic!



Now it was time to put his brand new swing set up... Porter's cousin Bailey did a super job sorting the huge amount of parts that came in the box! Then she, Uncle Chris and Auntie Jenn took on the project.

After everyone went home Uncle Chris and Auntie Jenn continued to work into the night until it was done! Their hard work all paid off....it looks awesome!

Did he like it? Does a cow say moo? He LOVED it! He has been having a blast going up and down the slide.

He even let Thomas have a swing:) Later Thomas got to go down the slide too!  It won't be long until Ruby can join in on the fun!



Words cannot express the gratitude we feel towards everyone who helped to bring this wonderful backyard together! Even days later when I step outside I still get overcome with emotion.....thank you! thank you!

thank! you!

You have all changed our lives! Special thanks to Nana who provided lunch for all our hard workers. ( I told you before the woman is a saint!) And thank you to Auntie Carol who helped with the kids and the mess! Love all you guys...you are the best of the best!

:) Rae

Broken Bones and Big Boy School!

Forgive me followers, it has been 12 days since my last confession...

But I promise I have a good reason. Last Sunday Mark broke his leg. He was kiteboarding and something happened which I don't fully understand yet, but basically he fell about 20 feet
( which probably means 35 feet) and landed hard on his board, which unfortunately broke his tibia bone.

 OUCH!

 He fortunately avoided surgery but has to wear a brace on his leg for about 8 weeks, putting NO pressure on his foot for at least 6 weeks. Right now he is unable to bend it but in two weeks when he goes back for a check up, they are going to allow his brace to make a 20 degree angle and slowly increase it from there...

I have been trying REALLY hard to keep this in perspective because I don't even like to think about how much worse this could be. But I tell you, this is not fun, for Mark or any of us for that matter. I had no idea how much I actually depend on him and I have an ever greater respect for single parents who do it all....all of the time. 

Luckily, he is a pretty good patient. Only asks for food and water and the occasional pain pill. I guess we will still keep him:)

On a more positive note, Porter started "school" last week. He was supposed to start last Monday but because he and Ruby had to stay at Nana and Pepe's on Sunday night ( Mark and I were at the QEH waiting to see if he would need surgery or not ) we decided to postpone his first day. Imagine, skipping school on the first day!

I was worried sick about how it would go as I am sure most moms do. But I tell you, he is doing simply amazing! His teacher is actually the same person who works with him 2 days a week on IBI skills. She has been wonderful and I am sure that is why it is going so well! Of course he is having his moments, but in the morning when I say "time to go to school" he runs for the door and hardly notices when I leave.  He already made a friend who helps him put on his shoes and he just loves playing outside at "recess"  AND I got my very first ever Mother's Day Card from my boy! Would you check out that amazing hand "butterfly"!  I am so proud of him, I could burst!

Here is a closer shot of the poem...in case you wanted to read it too:)

Ok, promise to chat soon!

:) Rae

Hope....continued:)

So after I finished my last post, I realized that I had much more to say on the subject of hope. Most importantly, the following story that my new friend Leslie shared with me a few weeks ago. I was so touched that this amazing mom took the time out of her very busy life to reach out to me. She filled me with the most hope I had felt in a very long time. I felt so inspired that I asked her if she minded me sharing it with you...thankfully, she was glad to share her journey about her amazing boy, Jack.

 
"When my five year old son Jack was 22 months old he could only say 'mama', 'dada' and 'water'. In having him as my first child I wasn't exactly sure of how 'normal' this was and asked tons of opinions, many people just said, 'oh all kids develop differently, he'll come around" and so on. Soon after I referred him to speech pathology, and after doing the initial assessment I went home with a sad heart and news to tell my husband that our son had a language development level equivalent to a 9 month old. Following this we took Jack weekly to see his speech and language pathologist. Soon enough came the hardest news I've yet had to receive as a parent. The speech pathologist thought Jack may be autistic. He had very few words, he did not respond to his name, he couldn't follow out simple commands such as 'go put the cup on the counter ', he had fleeting eye contact and he stimmed quite a bit. He was fascinated with light switches, space and airplanes. He threw temper tantrums when he couldn't get his own way (different though from other kids his age), he HATED transitioning from one activity to another and he was the pickiest eater alive. We had huge troubles with potty training and he had more allergies than you could shake a stick at.

The following step was months apon months of waiting, referrals and doctors appointments. When we finally got the diagnosis in October of 2009, we were somewhat relieved. I did,however go home and cry for hours... I felt like my world had crashed. You can say you feel relieved because there is finally a reason your son acts the way he does but you'll never know what it feels like to get news like this until you receive it. The thoughts that now ran through my mind were" will he be able to be in school with all the kids", will he play sports, play with kids, will he talk"? Well I have good news for all you moms and dads out there... With early intervention you can what I believe is "cure" your child. My pediatrician in fact says that Jack wouldn't have enough symptoms today to be "classified " as the traditional autistic child. He can talk in full sentences,( I think he may talk more that me sometimes:) he can play normally, read books at five years old, problem solve, ect.... He is doing above and beyond better than we ever could have hoped for. He doesn't even need a one on one worker in school at time. He is completely mainstreamed into the regular kindergarten class. His teacher told me last week he is actually above average in several areas and she has no social concerns at this point. Jack had two years of IBI, (intensive behavioral therapy) and private tutoring... And lots of prayers. He is also on a dairy free/ as much gluten free as I can do, free diet. He has come SO far and I hope in reading this you can get some real hope because I believe as parents as long as we advocate and utilize the resources out there we can do so much for our autistic children.... They are SO smart and we need to help them develop communication tools that they can use based on their needs."

Her story sounded so familiar to me, I found myself in tears after a few lines. And while I know not every child will rise to that level, some will. It reminded me of an awesome T shirt I came across a little while ago. ( I tried to get the picture, but Ebay won't let me:)

The T shirt said...

 I have Autism, but go ahead, set the bar high.....I can make it!

And that is more of what HOPE is made of. Thank you again Leslie for sharing your story with us.

:) Rae

Hope!

I read once that the hardest part of hope is the waiting. 

Truer words have never been spoken.

When I look at Porter and I see his words twisting and turning under his tongue it lifts me up and breaks my heart at the same time. I keep saying " You're words are almost ready..." I see his frustration, no, I feel his frustration.

It isn't fair.

It really isn't.

But if I sat and thought about that all day what would that accomplish? Nothing.

So instead, we celebrate the gains, however small or however tall and we keep on trucking.   

I have said before that one of the main reasons I started this blog was to help keep track of all of the progress Porter has made. So I thought today I would share some things we have been working on. It is going to be so nice looking back at this in a year or two and see how much he has grown.

We started PECS around the first of March . For anyone who isn't familiar, it is basically using pictures to communicate your needs 

( Picture Exchange Communication System). The first step was to get him to give us a picture in exchange for something he wanted...and that part is key...it must be something he really wants. We tried things like bubbles and balloons but his biggest motivator seems to be food! So it took a little while but he began trading the picture for the food item. 

 The next step was to move the picture around the house ( making sure he could see where we put it) so that he would have to look for it, because in the end, the goal is that he will bring us the picture of whatever he wants. We also started putting the pictures on a binder because that is where we plan to store all of his pictures so he will be able to access them quickly. 

Right now we are working on picking a preferred item over a non preferred item so that he learns to discriminate between different pictures, because up until now, I don't think he has really even been looking at the pictures. He just knows that if I pass this picture, I get what I want!  This part hasn't been going well, he has been passing both pictures and we have had to take a step back...but today...a breakthrough! He got it! 

He had these two choices:

I was armed with both the bowl of grapes and the sock and my hand was out, ready to receive a picture. At first he picked up both like usual, so we started over and this time he picked the sock so that is what he got...a stinky old sock. Well, it's not really stinky, it's clean... but still just a sock. Usually this is where we have an unhappy boy, but this time,  I swear, I could see it, it clicked! And he passed me the picture of grapes. Again and again.

Big day! HUGE!

And that folks, is what hope is made of.

Have a great weekend:)

:) Rae