Nana and Pepe

I remember my friend Crystal telling me that it is no accident that Mark comes from such a great family. She said the good Lord must have known that I was going to need that. My mom passed away 4 months after I met Mark. And after I lost my Dad this past summer, I find myself even more grateful for these beautiful people that I am so honored to call my family.

But today, I want to focus on the heart of that family.  Barb and Rob , also known as Nana and Pepe.

These people continue to amaze me with their incredible hearts.

Let me start with Nana. This lady continues to inspire me with her selflessness. Never have I met anyone so genuinely kind and giving. I don't even know where to begin. She does so many things for us all the time. I wonder if she knows how much they mean? And the best part is she does it all expecting nothing in return, she does it because that is who she is.

 Family holidays and suppers, well, they could be a recipe for disaster.  But nope, Nana always has something on the menu for Porter and Ruby. I hope she knows it doesn't go unnoticed.  I know how much those Gluten Free snacks are and I hope she realizes how much we appreciate the fact that she has them in the cupboard. And usually, she is holding or feeding one of my kids, so that I can have a meal while it's hot. I've given up arguing with her:) And even more importantly, I appreciate the lack of judgment that Porter might only have pretzels and fruit for supper some nights. Never have I felt "she thinks I'm a bad mother". Not once.

And I remember when we found out Porter had autism. She immersed herself in books and even attended workshops so she could learn more about how to help our boy! She is so proud of him and Ruby and I can't really describe the feeling it gives me when I see the way she ( and Pepe too) look at our children.

And now, let me turn to Pepe. I thank this man first and foremost for being the wonderful husband to Barb and father to Mark. Kids learn from what they see. Mark grew up with the finest example from both of his parents and I will be forever grateful to both of them for that. Pepe is also the man we call if anything is broken or needs "tweaking" in our home. He and Mark amaze me with how they know how to fix stuff. Mark can do a lot of it himself ( because he learned from the best ) but when it is a bigger job sometimes we call in the big guns ! (A.K.A. Pepe) .

Pepe was also a big help when Mark broke his leg and took Mark to Charlottetown for check ups. And if it wasn't for Pepe, I would have used up all my sick days at work by now. Pepe is "semi- retired" so anytime the kids are sick or the center is closed Pepe is there! I hope he knows how very much we appreciate that. (I want to add a shout out to Auntie Robyn here too because she has been there so many times for us as well!)

I was grateful enough when it was just Mark and I for their random acts of kindness. But now, our family has grown. We have two little people that we are lucky enough to take care of...and well,  sometimes it's hard. I feel like Nana and Pepe have an uncanny ability to know when Mark or I or both of us, are feeling overwhelmed. They will just randomly call and say " we want the kids for the night". Porter and Ruby each have their own rooms at their house! Complete with extra clothes and pampers so we don't usually have to pack anything. And keeping our kids isn't always easy. But they would never utter the words " they were really busy..or they wore me out today" or anything but "they were great kids, couldn't ask for better".

I'm not sure if you know the statistics for marriages in families who have kids with autism, 4 out of 5 end in divorce. YIKES! That's scary. I know I certainly don't want to turn into Ross Gellar! But all joking aside, these people help keep us together. Those nights without the kids help us remember why we fell in love in the first place.

Last week I had surgery to FINALLY repair a hernia I have been sporting and without a question, Nana and Pepe were there. Nana is back to working full time hours and still, without question, she got up in the middle of the night to feed our girl Miss Ruby ( who is STILL not sleeping through the night). They worked as a team to get our kids packed and ready for school each day and on the weekend when Mark was working and I was unable to be alone with the kids...there they were. And Porter even got to have a special day with Nana at the pool!

I know what you're thinking..wow, they are lucky to have them! And my answer to that is, darn right we are. We really are.

I really could write all day with how much I love and respect these people. I could write all day about how honored I am to be a part of this family. I could write a thousand thank you's and it wouldn't be enough. I could never thank them for everything they have done but let me just name a few things...

Thank you for:

 Smiles and hugs. Moving us! Painting. Building our fence. All the suppers I didn't have to cook. Maternity clothes from the States. Clothes for the kids from everywhere:) Loving our children. Buying safety locks. Stocking up on Gluten Free Snacks. Sleepovers. Sleepovers. Did I mention Sleepovers? Kind words. Accepting spirits. Advice. Listening. Putting up with my craziness. Holiday Suppers! Supporting our decisions. Always having fruit in the fridge. Cutting our grass when Mark couldn't. Playing with our kids. Giving Mark time off for appointments. Bumblebee videos! Toys and books. And most importantly, Love, the unconditional kind.

We love you.

Raelene, Mark ( Porter & Ruby )
xoxoxoxo

Special Memories

It is shameful how long it has been since my last post. The funny thing is I have about 5 different posts started but none that I have actually finished ....way to keep up my New Year's resolution! A touch of writer's block perhaps...actually no, it's not really that, it's more about deciding whether I want to share some of the stuff I have been writing about. You know what I'm talking about...I'm sure you have all written that Facebook status that you think is so incredibly clever and witty, only to delete it before you post thinking to yourself " I can't write that" !!!

Another one of my resolutions...stop second guessing myself. So far, I'm off to a great start with my resolutions! 

But there is something very important that I wanted to write about that I am a few days late getting to...in my defense, I was having surgery, so I guess that is a good reason. ( I'll talk more about that later.)

Jan 16th marked seven years without my mom. It's strange because it gets easier and harder at the same time. One of the hardest things is knowing that Porter and Ruby never got to meet my mom and even though they did meet my dad, they will not remember him. 

So it is up to me to keep their memories alive. So in honor of my mom's anniversary, I'll share this special memory.

I can remember being about 7 years old. We had moved to PEI from Nova Scotia and we were staying with my Nan "until we found a place". I put that in quotations because I'm sure we ended up staying there for years which was fine with me, it was there that I had most of the best memories of my childhood.

 I was the typical child who didn't want to go to bed at my bedtime and I was forever asking my mom to read me a story. Then one night, I'm not sure why, my mom said she would tell me a story instead...and there it began. She must have regretted that big time because I got hooked! I remember my nightly pleas became "TELL me a story !" I don't remember all of them exactly, but her stories were always about a little boy or girl who had to overcome some obstacle and of course there was always a happy ending! 

And then she would turn my pillow over to the cool side, lift up my hair, lay my head back down and kiss my forehead good night. 

So simple, but one of the best memories I have.  I certainly didn't have a perfect childhood, but I always knew I was loved.

Love and miss you Mom. xo

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!