Update from the Autism Sibling Study!

Here I am posting twice in the same week...that hasn't happened in awhile.

 I really can't explain why this blog has taken such a back seat lately, but my best guess is that it has a lot to do with the longer daylight hours ( which I LOVE so I'm not complaining ) . Bedtime for the kids has been later and later...which leaves less and less free time for Mama and Papa.

 BUT I have been meaning to share some news. Last month we took Miss Ruby for her 18 month check-up at the IWK. For anyone who doesn't know, Ruby is part of an Autism Sibling Study and we go for regular check-ups to see if she is showing any signs of autism.

It feels unsettling in some way to celebrate the fact that she is isn't showing any signs at all ( that is not the right word but I can't think of the perfect word to describe what it is we feel) . I guess it feels wrong in some strange way to be so very relieved that she isn't displaying any behavior that would be considered "autistic", like her big brother....does that make sense?

Anyway, that's a post for another day!

Back to our little trip!

Ruby was a great traveler. She enjoys the car , not quite as much as her brother, but if you give her snacks and some fun car tunes, she is good to go!

We arrived in Halifax before lunch so we could meet up with my Uncle Brian for lunch. I hope he doesn't mind me sharing his picture! We had a short, but lovely visit, which I'm sure my witty Uncle would say was all he could stand!

 After lunch we headed to the IWK Health Centre to the Autism Research Dept. This is our third visit so when we arrived, they knew us by name and seemed genuinely happy to see us!

And well, I don't like to brag, but they were quite impressed by our girl! This visit consisted of a parent interview and "playtime".  I say "playtime" in quotes, because all the activities were very much planned and organized but cleverly disguised as "playtime" so Ruby would be interested! There were tons of different activities, but let me share an example.  The researcher, Terry, would take a toy car and do what most toddlers do...drive it around the table and make "vroom, vroom" noises. Then she would hand the car to Ruby and see what she would do. Our Ruby is a master imitator ! She could vroom, vroom like nobody's business! Imitating is one area where children with autism can really struggle. And if you think about that for a second, you realize why language can be so difficult to learn for children with autism as well. Many children with autism simply do not imitate naturally...which is basically how we learn to talk!

But we are quite certain that talking will not be a challenge for our Miss Ruby. She has been talking up a storm around here. Her favorite word is NO, but it is quite funny how she says it when she really means business...she drags it out so it sounds a bit like a cat " Neeeeeooooooooooooowww"!  Every day she says something new and she is totally putting words together now! It is bittersweet to see her "pass" her brother. But I do know that she will be one of his best teachers. I can see it already.

Have a great weekend everyone! Bundle up, it's freezing out there!

Happy Mother's Day!

Mother's day can bring me a mixed bag of emotions.....

This special little gift brought me pure joy!



Happy Mother's Day Everyone!

"Today you are You"

 I remember when I was pregnant with Porter and I became strangely obsessed with reading about autism ( yep, that is crazy but true). I remember thinking how hard it would be to have a child with autism and I remember asking God to spare me from such an outcome. I'm ashamed to write that, but it is my truth. Even now, if you google "autism" you can still find definitions that include words like    " devastating developmental disorder".

Devastating? Really?


 I can't speak for all parents of children with autism, because it is different for each and every one of us. And I'm not saying that there are not days that are beyond HARD or that there are not times that watching him trying to communicate breaks my heart in a way I never thought possible.  And there are still days that I can be overcome with grief for the boy he could be without autism....

But mostly, I am grateful.

I am grateful for this beautiful boy that has simply changed my life in the most beautiful, unexpected way.

Porter has taught me so much about life that I never would have learned if not for him being who he is,  ALL of him. He has a constant light that shines around him. Just spend a few minutes with him, you'll see what I mean. He takes the greatest joy out of the most simple things. A plum, a toy train, a swing, a rubber Goofy doll. These are the things that light up his day.

He continues to remind me to celebrate the small victories in life. They really are the ones that matter. I have found overwhelming feelings of gratitude in the most unexpected places. Like just the other day when Porter said "hi" without me prompting him. It's hard to put into words the joy moments like that give me, joy I would not know if not for the struggles we have faced.

And this boy, he makes me laugh all the time. Like yesterday, he was in the tub and very carefully  trying to put the bubbles back into the baby wash bottle. They kept popping , but he didn't give up....he must have tried with at least 25 bubbles before he simply moved on to something else.

And every now and then he does something so wonderfully odd...like this.

Yes, that is play-doh on top of his nachos. But it's the blankie that kills me, he has it draped around his head with a little piece stuck in his mouth that he chews on as he goes about his "work" of piling things on his plate:)

So very UNtypical. That's my boy:)

(p.s. I know his blankie looks disgusting, but I swear it's clean!)

I could write all day about how much I love this amazing kid and how much he has taught me about life. So I guess my point is, I don't think his autism is "devastating" at all...

I think he is perfectly perfect just as he is.

 Do I want him to be able to communicate better? Of course!

 Do I want him to have a friend to play and explore with as he grows up? Absolutely!

Do I want him to be able to play tag with his sister on a warm Spring day? I dream about it!

Do I want him to be able to have a job and some independence so I can leave this world knowing he will be okay? More than anything.

But do I want to change who he is? This beautiful, magnificient boy who dances to the beat of his own drum?

Never.


Happy World Autism Awareness Day!

Hola!

So here it is almost 6 weeks after my last post! Ahhh! How did I let this happen??? Well, in my defense we all did have a bout of the stomach flu, good times, good times....then it was report card season and then we had to plan our trip to Mexico! ( When I say "we"  I mean Mark and I...we're not brave enough to take the kids..YET)

So was it paradise? Yep. I knew the minute we got there and they greeted us with a glass of champagne before we even checked in that it was going to be a good time! For anyone wondering, we stayed at the Dreams Resort in Tulum, Mexico. I can't say enough about this place. Absolutely magical.

Let me give you a rundown of our days...after sleeping THROUGH THE NIGHT we would awake around 7 each day. It was glorious! Then we would go for breakfast where we could eat whatever we wanted and not have to clean up any mess! And we could sit and talk to each other without anyone needing anything, it was so delightful.

After breakfast we would usually go back to our beautiful room and get ready for the beach. Yes, you could easily go to the beach at 8 am because it was HOT 24 hours a day! Some days Mark went kiteboarding or diving and those days I would just sit on the beach and read a book or people watch. One of the books I read was " Seriously..I'm kidding " by Ellen Degeneres. I found myself in full on fits of laughter all by myself. Not sure why I didn't make any new friends? Hmm. But seriously,  Ellen and I could be best of friends. We really could. Love her.

Then we would decide where to go for lunch, where again, someone else would feed us and clean up our mess! Sometimes we would have an afternoon siesta and then hit up the beach or pool again whilst sipping on drinkie drinks. Ok, anyone wanting to punch me yet?

After spending a leisurely day floating in the water or lounging on beach chairs, we would shower and clean up our sandy selves. Next came the big decision on where to eat dinner . At night we picked the fancier restaurants where we were given top-notch service! I'm talking service where someone pulls out your chair for you and places a napkin on your lap! AND the moment you finish your drink someone magically appears to refill it! Yeah, it was rough.

Then we would try to stay awake for the nightly entertainment which was pretty impressive I must say! We missed the fire show and magic night but saw some pretty amazing dancers!

I can't put into words what a lovely time we had, it really was a beautiful time in a very beautiful place. There were moments I was overcome with my surroundings. You can't help but feel like you are experiencing a little piece of heaven right on Earth.

But there were moments I missed Porter and Ruby so badly it hurt. In fact by Day 4,  I considered asking strangers if I could hold their babies. Just for second, just to smell their little heads. So despite being in paradise,  I was glad to be on our way home the next day. Not only did I get to see my babies, but I came home to a spotless house with dinner in the fridge for the next day. Seriously, these people, TOP SHELF!  We can't thank Nana and Pepe enough for taking care of our little mess makers while we were away. Special thanks to Auntie Robyn for watching Miss Ruby during the afternoons and for giving her extra cuddles and kisses when she wasn't feeling very good.

Here are a few pics from our trip!

                                                       Ahhh, Serenity now....

                                                       Pool with swim up bar

                                                           View from our room

     
Mark was able to get out kiteboarding a couple days, not quite enough wind for him though..

The beach at a place called "Excaret", we spent one full day here ..it was really beautiful.

Excaret had so many different animals and birds to see...when I saw this guy I immediately broke into the Three's Company Theme song...."come and knock on my door"....he he he

                                          
                                                Our last night..I'm happy/sad to leave....

This was Ruby trying on my sunhat the night before we left...you see why I missed home so much? She pulls it off well don't you think?

And I don't have a picture of it, but the day after we got home I was cuddled up with Porter on the couch. He took his finger and ran it on the outline of my cheek. Then he planted his nose right on my cheek and sniffed until I thought he was going to sniff a piece of my cheek right up his nose! This is his new thing, I know it's a little odd, but it is absolutely priceless. I think it's his way of saying he missed me.

Have a great week everyone!

 

Happy Valentine's Day!

The most amazing thing happened today....today of all days.

This morning Mark was eating his cereal at the table and Porter came along touched his back and said " I Wub You". No prompts. He said it ALL by himself.

Happy Valentine's Day indeed.

Silver spoons?

So Porter has a new thing..well, he's been doing it awhile, but a lot more lately.

After he uses a spoon or fork he has been putting it back in the drawer where he got it. A bit disgusting , yes, but I'll admit, when I open the drawer to get a spoon and I find one that has dried up food all over it, it makes me smile from the inside out.

So who's coming for supper?

:)

Pretend Play!

I never imagined a picture of my boy playing with a truck at his preschool would bring me to tears. But sure enough, it did. You see, there was a time not so long ago that Porter would have done nothing but spin the wheels on that truck for as long as you would let him.

And now...da da da da da! ( That sounds better out loud:)

I am so proud I could burst:)