Cape Breton Bound!

 So after some recent revelations we have decided to go private for Porter's autism assessment .  We have been on a waiting list for the gov't funded assessment since August. Our pediatrician told us the wait was approximately 6 months, but because the number of referrals have doubled since last year, our wait has been extended into July ( and that was an estimate so who knows for sure).  

Why the rush? Well, he is already getting speech therapy and is seeing an OT for his sensory needs but there is a therapy called IBI ( Intensive Behavioral Intervention) that Porter will receive ONCE he gets diagnosed with autism. Preschool children like Porter usually start this therapy in September when a space opens up as older children head off to school. Now, I assumed that would be THIS September. But we recently found out that the waiting list for that can be just as long as the waiting list for assessment...that was tough to hear. Like a punch in the stomach really. It's hard to explain the sense of urgency we feel to get our child the help he needs. Did you ever have that dream where you are being chased and you can't get your legs to move? It's that kind of feeling. We are being chased by time and it is going by so quickly. Everything I read and everything I know as a teacher screams EARLY INTERVENTION! So our hope is that if he is diagnosed soon , he will get that therapy this coming September, although as of right now, that can't be guaranteed either. Had we known all this, we would have gone private months ago but anyway...

After speaking with Dr. Dewolfe ,  the psychologist who does the testing here on the Island  ( who by the way was simply amazing) we called the first doctor she recommended, Dr. Reg Landry.  His assistant was also amazing and gave us an appt. for March 3rd!! A little over a month away! The man is coming in on a Saturday to do this assessment for us! I immediately kicked myself for not doing this sooner, but I am trying really hard to listen to my friend Jocy and stop doing that so much! Now of course, it isn't cheap, but after speaking with Dr. Landry's assistant we are feeling more hopeful that our health insurance will pay for a portion of the testing. Either way, I can't think of a better way to spend our money! And I have always wanted to see Cape Breton, probably would have chosen summer, but hey, we are getting to see more of our beautiful country none the less! Let's hope Ruby is a great traveler like her big brother!

Speaking of Ruby. Dear Ruby, if you grow up and ever read this blog and feel like you are getting the shaft because I talk so much about your brother, please know that has no reflection on how much we love you. In fact I fall more madly in love with you everyday. You are such a bright light in our lives and we appreciate how you seem to instinctively know that your brother needs so much of us right now. The next post will be all about you, promise! xo

Chat soon!

The Crib Tent is here!!!!

Finally. I thought you'd never come. Oh please Mr. Crib Tent...help us!!!

So I have had a few people ask me if I have noticed any improvements since Porter started the Gluten Free Diet on New Year's Day. Well, I guess it's hard to really say. You see, just about that exact same time, Porter started escaping from his crib. At first we thought ...wow, look at him ! He can jump that rail with the stealth of a cheetah! It was kind of impressive.  And it was sort of cute when he would "magically" appear in the living room after you thought he was down for the night, but then it got old, REALLY fast! And nap times, beloved nap times, disappeared. Every now and then he would throw one in and you would think...ok, finally, getting out has lost it's appeal and he is going back to his "routine" only to be brought back to reality the next day when he would escape again!

Now, don't get me wrong, I don't expect him to nap forever. I mean he will never be able to hold down a job if he has to nap from noon til 2pm everyday, so I fully expect to lose the naps sometime....and I am ok with that. But he's not ready, trust me. When he doesn't nap, it isn't pretty. Sure he can get by for a little while, but by 3pm, I am waiting for his head to do a complete 360. Most days by suppertime he will pass out from pure exhaustion and you are forced to let him sleep, because seriously, you don't want to wake him at this point, I learned that the hard way!  So then , as you can imagine, his night time sleep is a complete mess. Like for instance last night, he passed out around 4:30pm, woke at 10pm and was awake til 3am. Then up at 6 am to start his day! Thank GOD for my mother in law, she offered to take him for the day so we can get some rest. I've said it before, I'll say it again the woman is a saint!

So we have quickly come to the point where we need a new plan because this just isn't working ...for anyone. I mean we tried our best to get him to stay in his bed. I should have arms like Kelly Rippa from the workout I've gotten lately from lifting and re-lifting and re-lifting and re-lifting that child back into his crib but mine still look more like Regis's, but that's not the point. Then we thought ok maybe if he is "confined" to his room, the novelty will wear off and he'll just go to bed! WRONG! When we put a safety lock on his door so he couldn't get out he would destroy his room. Not in a fit of rage, but just because he can!  I'm talking every pamper from his basket thrown, clothes pulled from hangers in the closet and flung on the floor, diaper genie tipped over, blankets everywhere, the top of his changing table removed.... shall I go on? So we considered taking everything out of his room and putting a lock on his closet so he would get bored and just go back to bed, but I'm not living in a mansion here, I can't just move his things to the north wing...there is just no room to do that unless I want them in the hallway and that is just a plain old fire/safety hazard! I mean what would Jim Peters say?

Then just as I was about to give up hope,  I remembered a conversation with one of my favorite people. My friend Trudy once told me about crib tents. It was waaaay back when I was pregnant with Porter and we were worried about the cats getting into the crib and smothering him( did that EVER really happen anywhere?) Well, thank goodness the cats were way more afraid of him than anything and they certainly didn't want to curl up with him at night, so we didn't need a crib tent after all. But I remembered her saying she had one I could borrow. So I messaged her immediately and of course she said we were welcome to it, cause she's awesome like that, BUT it had a broken zipper that we would have to fix and it was made to fit a standard crib and ours was an adjustable crib. We didn't give up and thought we could make it work! To make a long story short, it didn't work out BUT Trudy did give us the website where we found one for a decent price that would fit our crib. I swear it has been like waiting for Christmas. But yesterday, it came!!! It was such a moment of pure joy that I thought when we pulled it out of the box it might glow!  ( It didn't in case you are wondering, but still glorious none the less) . Unfortunately it wasn't set up in time for his nap, hence the hellish night of sleep, but it's on there now!

So when you ask me if he has improved, I'd have to say hmmmm....not really. The bumps on his arms and legs that he has had since he was about 12 months old are pretty much gone and he is finally having solid poops, but all the things we had hoped for haven't really happened. The diet is supposed to improve language, behavior and SLEEP! Nope, not here folks. But like I said, he is walking around exhausted 90% of the time so it's hard to know if it is working or not. In fact that reminds me , the night before I messaged Trudy about the crib tent,  he had fallen asleep at 6pm and slept straight through til 6am the next day, we couldn't believe it! When he woke I felt like we had our sweet natured little boy back AND he said 4 new words that morning... Buzz, Woody, pancake and Eggo !  So like I said, he NEEDS his sleep. So I guess I tend to think if he was sleeping better, the diet might help? Anyway, we are banking on this crib tent to save us and we plan on continuing the diet for at least 6 more weeks. I'll keep you posted:)

Is that what I think it is???

So it is not unusual for us to find "surprises" that Porter has left around the house. You may find a Thomas train in with the pots and pans, a block in your bed, or my personal favorite, a sippy cup hanging on the Christmas tree!  But last week on my way into the kitchen I saw this....

 

I know what you're thinking...is that what I think it is???? Well I thought the same thing! But I was baffled at where it came from? It just didn't look like a Porter poop at all! And it certainly wasn't a Ruby poop! 

Then I thought ... Marmie!  For those of you who don't know Marmie ( short for Lady Marmalade) is one of our cats and every now and then she will leave the litter box with a "little friend" hanging from her fluffy butt!  (Right now my friend Kristine is gagging and shaking her head in disbelief that I would own such disgusting rodents.)  But back to the story. 

So I'm annoyed at this point because it's not like I don't clean up a million other messes a day, now I'm adding picking up Marmie turd to the list! But as I reach down with the papertowel to pick it up, I realize that it's NOT what I think it is. Upon closer inspection it hits me! (not literally) It can only be.....A WILLOW TREE ANGEL HEAD! Of course! So I go to the shelf where she used to live and I look for the rest of her. She's not there! Then it occurs to me that I have no idea where he hid the body! I must have searched for almost half an hour until I gave up, I mean, I just don't have the kind of time one needs to start solving such mysterious crimes!  So I go on with my day and hours later I am walking by the shelf and BOOM! She's back! Headless, but otherwise fine! I giggle to myself and wonder what he was thinking? I'll just return her to where she was and no one will ever know.....ahhh Porter, I love your surprises!

    My heart is heavy as I write this post today. On Tuesday Mark's grammy Edith died peacefully surrounded by loved ones including the man who loved her for 64 years, her husband Jack. Mark and I spoke to him at the wake and I will not forget that conversation anytime soon, never was I so touched by a man's love for his wife.  Simply beautiful. As was she, inside and out. It was so hard to see my mother in law Barb with such sadness on her face, but then in a quiet moment I realize that Edith's beauty lives on in her and in her family. Rest in peace sweet Edith. xo





                                    Edith Eileen Praught : August 9th, 1926 - January 17th, 2012

 For my mother in law Barb and family , may this poem comfort you in the days ahead.....



Safely Home

          I am home in heaven, dear ones;
          Oh so happy and so bright!
          There is perfect joy and beauty
          In this everlasting light.

          All the pain and grief is over,
          Every restless tossing passed;
          I am now at peace forever,
          Safely home in heaven at last.

          Did you wonder how I so calmly
          Trod the valley of the shade?
          Oh, but Jesus' love illumined
          Every dark and fearful glade.

          And he came himself to meet me
          In that way so hard to tread;
          And with Jesus' arm to lean on,
          Could I have one doubt or dread?

          Then you must not grieve so sorely,
          For I love you dearly still;
          Try to look beyond earth's shadows,
          Pray to trust our Father's will.

          There is work still waiting for you,
          So you must not idly stand;
          Do it now, while life remains,
          You shall rest in Jesus' land.

          When that work is all completed,
          He will gently call you home;
          Oh, the rapture of that meeting,
          Oh, the joy to see you come!

Author Anonymous

You can tell everybody, this is your song...

Tomorrow is the anniversary of my mom's death. Six years. Hard to believe how quickly time passes and yet, it feels like a lifetime since I last saw her. So much has happened in my life since that day. Although in so many ways she is not really gone. She is part of me. And now, a part of Porter and Ruby. Sometimes it overwhelms me when I can see her in their faces. Smiling, laughing, living....

But it's true what they say, people do live on forever in your memories. So today I will share one of my favorite memories with you that I am passing on to my children. Growing up, music was a big part of our lives, I don't remember too many days that we didn't have a record playing in our home or an 8 track traveling with us in our car, which in a few more years became the cassette!  I can remember sitting and studying my mom's records for hours looking at Olivia Newton John's flawless skin or Elton John's platform shoes...  there are songs out there that are literally like time machines to me. If I hear them, I can feel my history.

One thing that my mom did was give my sister and I "our songs".  My sister's was "Let me be there" by Olivia Newton John and mine was "Forever Young" by Rod Stewart. It was just something little that we shared. If we heard it on the radio mom would say "it's your song Beanie" ( oh yes, that was my nickname) and we'd crank it up and sing along. It has turned out to be something that has meant a great deal to me, and now today when I hear "Forever Young" it still makes me smile, or cry, depending on the day.

So I decided I want to pass down this tradition to our kids. For any Johnny Cash fans out there it comes to no surprise that Porter's song is " Hey Porter" (which we can get him to dance a little jig to if he's in the right mood). The funny thing is the song takes place on a train..a train! Who is the biggest Thomas the train fan out there?? Our boy, that's who!  Here is a link to the song:

http://www.youtube.com/watch?v=bksZ4Qu18kc


And Miss Ruby has her very own song too, courtesy of my fabulous Aunt Linda who found the song and emailed it to me shortly after she was born. Thanks Aunt Linda, we love it! It's another oldie, but goodie. Simply titled "Ruby baby" it tells the story of a boy in love with a girl named Ruby. Here is the link, try to keep yourself from dancing!

http://www.youtube.com/watch?v=PbP4AjVqTz4



Love you Mom.
xo

Temple Grandin

So last weekend my mother in law called and offered to keep Porter over night ( don't even get me started on my mother in law, the woman is a saint! ) So with all this extra time on our hands, we decided to watch a movie that I had been wanting to see for awhile. It can be a bit challenging these days to watch a movie when Porter is home, now that he has mastered the art of getting out of his crib, we can end up having to pause every few minutes to put him back to bed and well, that just takes away the fun of watching a movie...but back to my point!

The movie was "Temple Grandin" a semi- biographical film based on her life. Temple Grandin
" is an American doctor of animal science and professor at Colorado State University, bestselling author, and consultant to the livestock industry on animal behavior. As a person with high-functioning autism, Grandin is also noted for her work in autism advocacy and is the inventor of the squeeze machine designed to calm hypersensitive people." ( I copied that directly from Wikipedia, which explains all the links).  I have always been a person who loves to be inspired by great people. But this was different. Now more than ever,  I need a Temple Grandin.  The movie actually exceeded my expectations, Claire Danes was nothing short of amazing playing the role of Dr. Grandin! Here is the trailer:

http://www.youtube.com/watch?v=cpkN0JdXRpM

Now,  I realize not every person with autism is going to accomplish everything that Dr. Grandin has, in fact that reminds me of something I read recently on one of my favorite blogs. "If you've met one person with autism, then you've met one person with autism".  Brilliant. People with autism often share some characteristics, but like everyone else, each person is unique in his/ her own way. It was however, very inspiring to watch how Temple was able to use her autism to help her achieve all the incredible successes in her life. It was also so great to get a glimpse (even if it is just ever so slightly similar to Porter's) into the mind of an autistic person. One thing that stayed with me was how Ms. Grandin said she "thinks in pictures". So for example when the word swing is mentioned, she would have a database of pictures of swings in her mind and these pictures would naturally appear when the word swing is said. I also read in one of her books that when she enters a room she sees every detail of that room. This struck me because I've often noticed Porter will "eye up a room" when he enters it. I just assumed he was looking for what kind of trouble he could get into, but perhaps he is storing all that information in his very own "database"!

Anyway, I don't want to share too much in case someone reading decides to see the movie, but I will say that after the movie I felt a peaceful easy feeling. A feeling that while life will not be as I planned, it will be "different, not less".

Chat soon,
Rae

Ruby's Baptism!

Sunday was a big day for our Miss Ruby. She was baptized and there was a party held at her Nana and Pepe's house afterward where she was the guest of honor! A pretty big day when you are 2 days shy of 3 months old ( which if you do the math makes her 3 months old today!)  Her little dress was so sweet that I feel like I should start the next sentence with " the baby wore a dress by...." but that would be silly. However, we are not sure she was a huge fan as you can see in this picture....

That picture about sums up how it sounded at the Church, at one point there was an entire choir of crying babies but I must say our Ruby was the lead vocalist! :) 


So many loved ones came to help celebrate Ruby's big day! After the ceremony we all gathered at Nana and Pepe's for some yummy munchies and Ruby got to open her gifts! So many beautiful gifts and keepsakes that will remind us of her special day for years to come. I want to say a big thank you to everyone who came and shared the day with us and a special thank you to Ruby's godparents, Robyn and Chris and to Nana and Pepe for hosting everyone.  Here are a few more pics from the day....

Ruby and Daddy at the Church ( I realize you can't see Mark, but that IS him:)

Ruby with her Godparents Auntie Robyn and Uncle Chris

And a rare family photo....( it's not often we get the 4 of us together)

Chat soon
Rae:)

Look what I did!

Here is one of our favorite little videos that we took recently of Porter completing his clock puzzle. It was a gift from our neighbors (oh and don't get me started on our neighbors, we have the absolute BEST neighbors on both sides) but back to my point. It was a gift for Porter when Ruby was born in October. He had zero interest in it at first as he has with all puzzles. He thought it was much more fun to throw the pieces than to figure out where each one would go! And boy, could he zing those guys! So we put it away and would try it here and there until finally one day, it clicked! And it was something to see, he went from having no idea how to do it, to looking at the the piece and just knowing where it would go. We were pretty darn proud to say the least and so was he...the ending was my favorite part...it was like he was saying "look what I did, ta da!" 

Maybe it's me?

So I have come to the realization that I smell poop almost everywhere I go. I smell it at the Superstore, Sobey's, Walmart, in the car on the way to Walmart.... yep, that about sums up everywhere I go! No, but seriously there are sooooo many MANY things I didn't know about Motherhood ( and still don't) but one thing I definitely didn't know was how poop would be such an integral part of my day. And since Ruby came along production of poop has doubled, no it's tripled! And I wash my hands, I mean I obsessively wash my hands until they are raw, but I still smell it! I think the smell is permanently stuck up my nostrils, at least I hope it is, I hope it's not me???

I do feel terrible for how many diapers I put on the planet, it feels like we are forever changing the diaper genie. Oh and FYI, when the diaper genie says it's full, it means it! I have been elbows deep in "it" more than once and yet I still find myself thinking " I can fit one more in there". And when you empty it and see this giant blue worm of squished up soiled diapers you realize how much waste you are creating! I commend those moms who use cloth diapers. I think that would just send me right over the edge....but I do feel bad about it if that counts for anything.

It's weird, when I smell a dirty diaper I dread changing it and Mark and I have the "I think it's your turn" conversation daily. But if too much time goes by and no one has pooped, I panic and think " why hasn't he pooped? I better give him more water, wait... did she poop this morning?" These are the high level thoughts that make up my day. And now with Porter's new diet, I find myself thinking more about poop, will it change his poop, will it make him poop more, less? Ahhh poop. You take up way too much space in my brain.

Ok, now that I have changed the world with this post, I better run.

Rae :)

Going Gluten Free

So today is Day 4 of Porter's gluten free diet, it's going well if you don't count the fact that he had gluten free cookies for breakfast today! The diet is something we have wanted to try for awhile. When our pediatrician told us that Porter was most likely autistic , one of the first things I did was hit up Google.  I often joke how I have my PhD in googleology so I am pretty much a doctor now. ( Just to be clear, I don't really think that). But seriously, I have always believed that knowledge is power and in those first few weeks when I felt so utterly, deeply hopeless, I found some comfort spending hours on the internet reading all the possible interventions available. Some of them were really out there, but one that kept coming up was diet.

According to research 80% of parents notice an improvement in their children after starting the GF diet. So that led to more research on the topic and after weeks of compiling a list of "Porter's Gluten free likes " we are finally doing it. I was hesitant at first because I am already at my wit's end trying to feed this child as his list of dislikes become longer and longer everyday.  I think what finally convinced me was an episode of The Nature of Things that I watched recently which really explored the connection between the gut and autism. After that show and a discussion with our pediatrician I started Porter on probiotics, within two days he said the words that I secretly wondered if I'd ever hear..."I wub you". (We have to start him off with the "I" but he'll finish it). And since then he has pretty much doubled his vocabulary. I should note that in the week following the probiotics, he also began a "sensory diet". So I guess I can't say for 100% certainty that it is the probiotics, but my instincts are saying they are helping. I really think they are both working together...but let me get back to my point. I was so pleased with the changes that I decided we have to try the GF diet too.

So to keep track of any improvements or new language  I am going to make a list of all the words he has right now...let's hope this list grows in the coming weeks!

Momma
Dadda (sometimes Daddy)
Nana
Pepe
up
I
wub /love
you
numbers 1-10 ( you have to listen close, but he has them)
Most of the characters on Thomas and Friends ( you have to listen really hard but he knows them and will will say them when we sing the theme song or point to their pictures in books)
Thomas
Percy
James
Gordon
Henry
Emily
Cranky
Harold
Toby
Hero
Charlie
Victor
Kevin
Hat ( Sir Topham Hatt)

Some foods like:
freezie
chip
banana ( nana )
candy
cookie ( on a really good day)

And some animal sounds if we prompt "what does a ____ say?"
moo
baa
hee haw
meow
woof

The sad part is I know there are lots more, there are "words" he says all the time that we can't understand...yet. Even this list is very generous, many of these words would not be recognized by the average Joe, but because we recognize them that makes them count!

Wow, I just scrolled through this list and it made me happy. So much growth already:)


Chat soon,
Rae

Just do it!

So I'm finally doing it..I'm starting this blog. I've been throwing the idea around for some time now and figured it was a great way to start off the new year. Why you ask? Well let me tell you the
reasons.... ( in no particular order).

1. I want to create a history for Porter and Ruby. My mom is no longer physically with us and I can't count the number of times I wish I could ask her something about my childhood and am unable to....hopefully I'll be kickin' around awhile but if something should happen then this blog will exist for them to have a little snapshot of their histories.

2. I have always secretly fancied myself a bit of a Carrie Bradshaw....if I wasn't teaching I'd love to be a writer, doing any kind of writing, I would even love to write commercials. In my teens I used to think Angela Bower had the best job ever!  My grade 11 teacher ( Mr. Blair Arsenault) once told me I had talent..I never forgot it. Proof again that teachers need to choose their words wisely, kids actually do listen.

3. I hardly ever leave the house. No really, it's true. Days can go by and I realize I haven't left. I'm a mom to two beautiful children, Porter - 2 1/2 years old and Ruby - 2 1/2 months old . If you are a mom you don't need any further explanation, if you are not...it's a lot of work to leave the house, especially in the winter, so more often than not, it's just easier to stay home. So my point, this may be only my form of entertainment for days!

4. This one is important...this past summer we stepped out of denial for a day and took our son Porter to the doctor where we were told what we already knew...that most likely Porter has autism( we are still on the waiting list for an official diagnosis). That day and the days ahead will be the subject of many future posts , but for now it is a huge reason why I want to start this blog. It will be a great way to share all of his progress with everyone.

5.  Lastly, I have heard writing a blog is like therapy. I don't have much time just for me, but I am vowing to write at least twice a week. Here's hoping it cures my craziness!

So, Happy New Year, thank you for reading...that is if I have actually found the nerve to tell someone about this blog:) My face is red just thinking about that.....

Chat soon
Rae xo