Memories

It's bedtime here at the Richard household, but I can't let the weekend go by without sharing a memory in honor of my mom. Yesterday marked the 10 year anniversary of her death. So hard to believe it has been 10 years..so much life has happened that I wish she was here for...

I did promise to share a memory every year, as a way for Porter and Ruby to know her in some way. I don't remember the year but I think I was around 11 or 12 years old and mom was working at       " The Base" ( wow..just realized that " The Base" came up yesterday in my conversation with friends:) . Anyway back to my story. Mom was working as a secretary there. I believe the name was actually CFB Summerside, but if you lived here, you knew it as " The Base". 

It was summer and we wanted to spend our days lazing on the beach. I remember at least 2 or 3 times a week Mom would pick us up on her lunch hour and drive us out to Chelton Beach. (And there was usually a pick up of a friend on the way). Who knew a Chevette could make such good time! I remember we would get to that hill on the road that cuts off to Chelton and we would yell " go faster , go faster !!" We would get butterflies as we soared down the hill! Good clean fun. She would drop us off and then return after work to get us. I'm sure we never gave her the thanks she deserved..so thank you Mom. I hope you can see this from where you are! xoxo

Goodnight Sweet-Pete

Yesterday Ruby and I were playing "Little Red Riding Hood." This is where I pretend to be Grandma and she pretends to be Little Red Riding Hood. The game can vary a little, she can be Rapunzel and I can be Sleeping Beauty but the idea is the same...I get to lay down and she brings me treats. It's a fantastic game except the treats are either fake plastic food or "pretend treats" !! 

So yesterday I was Grandma and she was bringing me some "cookies". I told her Grandma was really sleepy and just needed to close her eyes for a couple minutes. ( This NEVER works, but I always give it a shot:) SO she leans down , rubs my forehead and says " Goodnight Sweet-Pete."

I wasn't sure I heard her right , so I asked her to repeat it, sure enough she said " Goodnight Sweet-Pete ".  I had to hold in my laughter.

I always call her "Sweet-Pea" but all this time, she has heard " Sweet-Pete".

Adorable. I didn't even correct her. It was just so cute.

Happy World Autism Awareness Day!

I'm never sure what to post on these days, but I always feel a little extra pressure to post something! I thought about sharing some early signs of autism, or some good books I have read , but then I thought if I could go back in time when I first heard the words " classic autism - on the severe end" what would I want to know?


Well, one thing I would tell myself is that this autism thing...it's not so bad. I feared it most when I was pregnant with Porter. I mean I spent hours and hours reading about it online. Weird, I know. Funny how a mom just knows. But honestly, it has really grown on me. Now I won't lie and say it's the best thing ever! I mean, come on, because of autism my boy can't tell me what he needs to tell me, and for that, I will always say autism can a bit of a jerk. But really, truly, it has some perks too. Let me share my Top 5!


1. Because of autism, my boy can't be bought. You could take this kid to Disneyland and I'm pretty sure he would be more excited about the popsicle you buy him at one of the canteens there, then he would be about anything else. At Christmas, we could easily give him the best Christmas ever for about 5 bucks. He just doesn't care about material stuff at all. I love that about him. It is a constant reminder of what is really important in this life and I am grateful for it.


2. Because of autism, Porter doesn't know how to fake it. If he smiles at you, it's not because he is doing what is socially expected when you greet someone, it's because he is 100% happy to see you. He has never faked anything a day in his life. He is exactly who he is , all of the time. There is something so incredibly beautiful about that. It fills me up.


3. He is wonderfully odd. I mean this kid dances to the beat of his own drum. Sometimes I just watch him and think how much I would love to get into his mind for just one day. He doesn't think the same way as we do, and that is awesome. Some of the greatest inventions in life exist because someone dared to think outside the box. I tell you this boy , he's outside the box. Today for example, he was eating popcorn and decided he wanted to have the bag at eye level, so this is what happened.

         

He put the chair on top of the table so the bag could be even with his arm reach. I know it isn't the theory of relativity or anything but he is always problem solving in ways I would never think of myself.



And then there are his "creations ", I can't count the number of times I have arrived to a scene like this. Most of it involves balance. Somewhat odd, but simply awesome. I wonder what it all means. Hmmm.

4. Because of autism, Porter has made me appreciate the little things. When I imagined being a mom I pictured all the milestones my children would reach, and I still do...but I had no idea the joy I would get from the simplest of things. Not that long ago I asked Porter to " go get the ketchup" off the counter and I pointed to it. He followed my point and went and got it. Mark and I looked at each other and our eyes lit up! This would have been so hard for him in the not so distant past...but he got it. Little things are BIG things to us now.




5. Because of autism, my boy makes us laugh! I mean last week the Mormans came to the door and here comes Porter around the corner, completely naked! So incredibly inappropriate, but darn it, it's funny too! I mean come on, imagine their faces! And Porter didn't have a care in the world, just nonchalantly saunters on by. I'm sure I won't be laughing if he is still doing that in 10 years, but for now, it's funny. He makes us laugh all the time. And not just by streaking! The kid just does funny stuff. I mean, holding your belly because it hurts from laughing kind of funny stuff.




I know I said I would give you my Top 5, but I just thought of one more. He has made me stronger. I think every mom can say that motherhood has made them stronger, but autism, it gives you a unique kind of strength. It has made me reach deep. It was my biggest fear when I was pregnant.

And now, here I am.

Here I am, telling you all the reasons I love autism. Who knew?




Happy World Autism Awareness Day!

R.I.P. Uncle Brian

Uncle Brian, Ruby and I on one of our Halifax trips to the IWK, so glad I took this picture.

On Tuesday, Feb 3rd, we lost my dear Uncle Brian. He has been in the hospital with liver and kidney failure for weeks, but it was actually his heart that finally gave out and took him from this Earth.

It was his wishes that he have no special service and just asked that any viable organs be donated. If you knew him, that makes perfect sense. But it seems wrong not to pay his some small tribute. Just this morning I remembered yet another example of how kind and selfless this man was. When my Mom was alive , she lived on a very small income. At one point she canceled her cable to help cut costs. Uncle Brian used to tape her favorite shows ( back in the days of VCR's) and mail them to her. I remember when she passed away we found dozens and dozens of those VHS tapes!

Such a kind soul.

Rest in peace Uncle Brian. I will always remember you as the Uncle that used to let me swing on his arm, who took me to the corner store and bought me a huge bag of candy that would last for weeks after your visits, the Uncle that made me look like a genius to my Grade 3 teacher when he taught me how to find the square root of a number. And the Uncle who always made me laugh when he would say things like " here's 5 bucks, now go play in the traffic".

Love you always.

xoxo

Happy New Year!

Well, here it is, the first day of 2015!! I know I have neglected this blog for much of 2014 so thought I'd share some of our highlights of this past year!


In February we went on our annual Richard Sleigh Ride! This is something we do every year and every year I love it just a little more. There is something to be said about traditions. It certainly helps that the Richard clan are top shelf people!

It took Ruby a couple minutes to warm up to the idea!

 

 

 

 

Rare family photo!

                 
                          Such a great day! Hope there will be snow this year so we can go again!



In March, Mark and I took a little trip to Toronto to see Mr. Billy Joel! (Thank you Nana and Pepe for watching our kiddos!)  Billy Joel has always been on my "must see" list and seeing as he was just a little plane ride away, I figured it was time! He was even more than I expected..I have never had a feeling like that at a concert before in my life. Magic. Pure magic. I enjoyed watching the people around me almost as much as the show. The energy was something I will not soon forget. And besides being incredibly talented, Mr. Billy Joel is funny. I like funny.

Mark and I before the show!

We had great seats!! Billy Joel, you are still rock and roll to me!

In June our boy graduated from Pre K ! We were so proud of everything he had accomplished at Rainbow, and eternally grateful for the care he was given.

Here he is with his tutor Robyn, she was as proud of him as we were! 

"I did it! I'm so excited I need to flap! "

 

 

                        Forever grateful to Robyn, Rebecca, Nicole, and all the staff at Rainbow!



In May, Porter turned 5! I already shared a few pics from that day, but we had Robyn ( Porter's tutor is also an excellent photographer!) here taking photos and they were not ready when I shared , so here are a few of my faves!

The summer breezed by, we started our summer off with a little trip to Moncton courtesy of RCC! We spent the day at the zoo, then back to the hotel at Crystal Palace for fun times at the pool! The bosses even came along and let us have a quiet dinner out while they took the kids to Crystal Palace! Overall it was a great trip, however, not much sleep as Porter was waaaaayyyy too excited to sleep! The pool was just a few feet away, I mean, who can sleep knowing that happiness is just outside your door?

We got to the beach a few times, spent a LOT of time at parks, and took a few trips to Shining Waters. Every year I like that place more and more...a fenced in kiddie pool complete with mini waterslides...it's like they made it for us!

When I look at this I can hear him squealing with delight!

Then back to school for TWO of us this year! Porter started Kindergarten! I shared a pic already but here is another! There he is, my big boy, with his first of TWO broken limbs this fall. Poor little guy. Even that experience has shown me how far we have come! He was beyond brave. Now if I can just stop this fearless wonder from climbing things he shouldn't!

Kindergarten is going even better than I expected. He is learning so much! He knows so many letters and is picking them out in places completely by himself! Just the other day I caught him saying the letters  D. O. R. A. while looking at Ruby's Dora toothbrush. What's really neat is that I assumed the letters were on the toothbrush, nope, they're not, he just knew that is how you spell it! He can also spell his name orally and count to 10! And I am positive he knows so many more that we have just yet to see yet! Not too shabby..and we still have more than half the year left!

Miss Ruby turned 3 in October and went for her 3 year assessment at the IWK as part of the research study we have been participating in since Ruby was 6 months old. She did fantastic! In fact, I don't mean to brag, well, ok, maybe I do...but the head researcher shared her IQ with us, her score was 127! Three more points would put her in the superior range! Our girl is smart as a whip! We knew that already though:)



Then came November and a little trip with some fabulous girls to Miami! We were celebrating turning 40.( I'm not quite there yet, but I will be this coming year!) It turned out to be one of the best times of my life! I have been blessed to have the very best friends throughout my life, some I rarely see but they know who they are...and some I get to see a little bit more, but now that most of us are Moms, it gets a little harder to just "hang out"! So we took full advantage of just relaxing and made so many fun memories that I'm sure we will be talking about for years to come! Here are a few pics!

Our hotel! It was soooo nice, if you are ever heading to Miami..Grand Beach Hotel Surfside comes HIGHLY recommended! What a spot!

We spent lots of our time eating!

                                                     

But most of our time was spent in this little piece of heaven!

                      

I was even a Captain of a boat for 30 seconds! haha

                                   

One of the highlights, having the time to appreciate the overwhelming beauty of this Earth! 

                                     Thanks for the memories ladies! We shall do it again!


And that brings us to December! Christmas went well considering Porter and Mark had a pretty nasty stomach flu for most of it, Ruby and I were lucky and got off with colds. Santa was good to us again this year and there was just a little more excitement than last year!

On New Years Eve we took the kids to the CUP for a free New Years Eve swim and then headed into the Bouncy Castle room. Porter shockingly had no interest in the Bouncy Castles ( who is this kid??) so we headed over to the balloon animals which were a huge hit!  Porter has been way more excited over the blow up balloon sword he got than any of his presents from Santa! And Ruby loved her pink balloon doggy until we got home and then it wasn't allowed to come in the house. Something about balloons Ruby isn't quite sure of :) We had the kids in bed early and Mark and I enjoyed a quiet evening at home.

Overall, it has been a pretty good year. Of course , I've only shared the highs..there were many lows but just going to focus on the good stuff, if only we could do that all of the time!

For any of you that still bother to check this blog, I wish you the very best in the New Year. I will be praying for good health and good memories for all of you!

Ruby Doo turns 3!!

Last week our girl turned 3. We can't believe how much she has learned this past year. She continues to amaze us with everything she knows.

Ruby, someday when you read this I want you to know that you were born to be great. If ever you doubt what you are capable of,  I want you to know that there isn't a day that goes by that your father and I don't look at each other and say " Ok, this kid is wicked smart ( my friend Catho will say that in the best Boston accent:). You not only have the brains, but you're strong too. A born leader. You are fearless in a way that makes my heart skip a beat, but makes me beam with pride at the same time.

And then there's your heart.

So pure and beautiful it has brought me to tears on many occasions. You are still learning how to share with him, BUT I see your heart best when you are interacting with Porter, "Good Job Portie" you will often say and your face lights up with genuine honest to goodness love. 

So on your birthday ( okay, on this day more than a week after your birthday) we wanted to tell you how very much joy you have brought to our lives. You are growing up so fast and we are so proud of you.

We celebrated your birthday with family. You had a wonderful time!

Here are a few highlights:

Here you are with Nana and Pepe. You LOVED your cake..I think you have a bit of a sweet tooth, not sure where you get that from:)

Here you are with your cousin Kenzie, you remind me of her when she was little in many ways, " I can do it myself " was one of her favorite things to say also!

Your Great Grammy and Great Aunt Gail came to celebrate with you too! 

There were many others too but turns out I'm not much of a photographer, the rest are pretty blurry. 

You had a great time opening all of your presents!

 

                    Thank you so very much to everyone who came and shared in Ruby's big day! xoxox

Methylation and B12

I started writing this blog weeks ago and finally finished it today. As most of you know, Porter has been seeing a doctor in Halifax who specializes in autism. His name is Dr. Rade and he really knows his stuff. One of the things he suggested was genetic testing for Porter. This was to see if Porter had any gene mutations that would impair his methylation system.  Not sure what that is? Me neither! Hang on and hopefully you will better understand in a minute.

We ordered the testing kit through https://www.23andme.com/ and then had the fun task of collecting Porter's spit...yes, SPit.  Because our boy will not spit on his own, I had to take a sponge that looked much like a q-tip and swipe the inside of his cheek and then squeeze that spit into a vial until we filled it to the line marked. That was fun. Actually, he did pretty good considering I chased him around for an hour and stuck that sponge in his mouth every 30 seconds. I tell you, when I reached that magic line , I felt like I had really accomplished something! 

We sent the kit off in the mail and waited patiently for the results. As it turns out, Porter has several gene mutations that could play a huge role in his autism. To be clear, this isn't the direct cause of his autism , but more what has made him vulnerable by impairing his methylation system. Basically, if you have an impaired methylation system you are far more vulnerable to environmental toxins. 

Here are the results, with Dr. Rade's notes. The ones that have a -/+ sign beside them indicate a gene mutation.

So to understand why this is such a big deal, it is important to know why methylation is so important. 

Methylation is defined as:

" the addition of a methyl group to a cytosine residue on double-stranded DNA , a process which plays a major role in gene expression and preventing restriction endonucleases from cutting DNA at their recognition sites. "

SO now that that is 100% clear, let's move on...hahaha... just kidding, the next paragraph explains its importance to the nervous system and it makes it a little clearer...although I am kicking myself for talking so much during biology class:)

 

"For one, our nervous system is intimately linked with the methylation process so that nerve function is highly dependent on proper methylation. You may have all the messengers your body requires yet if the proteins making each nerve's insulation are not methylated, you won't have proper communication between the nerves. This is similar to having frayed electrical cords with highly vulnerable, exposed wires and is the impetus for many of the symptoms of autism, CFS and MS. "

 

Methylation is responsible for:

• RNA and DNA (genetic material responsible for every function in the body)
• Immune system regulation
• Detoxification of heavy metals and other harmful substances
• Making GLUTATHIONE (the body’s main detoxification enzyme responsible for removing mercury, lead, cadmium, arsenic, nickel, tin, aluminum and antimony)
• Production and function of proteins
• Regulating inflammation

"Dr. S. Jill James (who has recently received a NIH - National Institute of Health - grant for her research) has shown that children with ASD have impaired methylation and decreased levels of glutathione.  Supporting and/or repairing the underlying impairment and deficiency translates into increased social, cognitive and language development.

Dr. S. Jill James has also shown that children with ASD have 80% less glutathione in their cells and 90% have defects in their methylation.  This means that children with autism cannot effectively fuel the brain and detoxify heavy metals and other harmful substances from their system."
 

So now what? Well, the first step was to start giving him B12 supplements.

"The brain is the only part of the body that depends entirely on B12 to detoxify.  As the the brain is over-burdened with toxic substances, the “wheels” of methylation slow, severely impacting development."

"What are the benefits of MB12 treatment?  Enhancement in executive function:

• Awareness
• Cognition
• Appropriateness
• Eye contact
• Responsiveness
• Normalized behaviours and interaction

Promotion of speech and language:

• Spontaneous language
• More complex sentences
• Increased vocabulary

Improvements in socialization, understanding and expressing emotion:

• Initiation and interactive play
• Understanding and feeling emotions
• Affection and tolerance to touch

Undesired effects to B12 therapy are a good sign of treatment success.  They are not uncommon and include:  

• Hyperactivity
• Self Stimulating Behaviour
• Increased mouthing of objects
• Sleep disturbances – which can be managed with other treatments
• Aggression, hitting and biting - caused by frustration due to increased awareness 

*Side effects can be mild to severe and are considered transient which means they will pass as  treatment progresses*

MB12 is a treatment, not a cure.  However, many children using MB12 combined with other biomedical and non-biomedical therapies make incredible developmental gains and in a small percentage of children, have had their ASD label removed."
 

We noticed an improvement right away and right now we are only giving him Hydroxy B12 and folinic acid, which when combined with the B12 helps improve his glutathione levels. The next step will be to move to methyl B12 but his doctor wants to make sure his body can handle it properly, as there can be some undesirable side effects. There are so many benefits in using B12 and we have seen them already! We have noticed an improvement in his language and a huge increase in his effort to try to communicate..he is trying sooooo hard! We have also noticed a genuine increase in his interaction with us and his overall awareness has improved as well. When I try to explain how, it is hard, it's just something you have to be here to see...like for one small example, he has started objecting going to bed on some nights. Some might think that is a bad thing, but for us, we see that as our little boy coming out ...what 5 year old wants to go to bed at bedtime? 

Of course we have noticed the undesired effects also, which at first made me wonder if it was even worth it, but when I read the info. above , I realized that that means it is working!! 

So that is where we are right now...trying to slowly repair his methylation system and praying that it continues to help him be able to communicate with us better. I have a good feeling about this, I really do. I hope this has helped explain why we are trying the biomedical approach. I know there are people out there who probably think this is all a bunch of quackery, but to me, it is real genuine science. And real genuine hope.

________________________________________________________________________________________________________________

On a completely different note, just realized it is my Mom's birthday. She would have been 65. Hope you are celebrating big up there! Love you.