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:)