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.

Porter starts Kindergarten and Broken Bones!

 

So it finally happened...our boy started Kindergarten! Every year in September I get a touch of "first day jitters".  But this year, I hardly slept a wink before that first day! And it took until lunch time before the knots untied in my stomach. This year my boy was starting school too.

Of course it went great, I knew it would:)

However, it just so happened that his first day was cut short. He had an appt in Charlottetown and had to leave before recess. The week before he had been climbing ( one of his most favorite things to do) on a play kitchen and fell. After a trip to the emergency room, and three X rays later, the diagnosis wasn't complete. They could see a line, but his elbow was also full of fluid so it was hard to tell for sure, could be a fracture OR a bad sprain. He went home with a half- cast and a sling with an appt. the following week to have it checked again. I couldn't have been prouder of the way he handled the whole visit. We were there for more than 6 hours all together, not to mention he had a broken bone!!  It is times like this when I realize how far we have come.

Luckily there was a sink in our waiting room. Our boy could watch water run all day long!

So the following week, on that very first day of school, Daddy picked him up right before recess and off they went to the Fracture Clinic to have it checked. Daddy said he was the bravest boy ! He left with this blue, waterproof, cast. He has to wear it for 3 weeks. He is handling it waaaay better than I would. Have I said how awesome this kid is?

So it has been a little over a week since that day. We are beyond proud of how well Porter is doing in his new big boy school! He has a great team of support, wonderful Educational Assistants and his autism consultant spent the first two days with him at his new school. How could it not go well?? He has had a few moments here and there, but haven't we all? He is making new friends, learning new things and I have no doubt in my mind that great things are going to happen. I can't wait.

Random Acts of Kindness

At the beginning of the summer I made a nice to-do list of all the things I wanted to accomplish this summer. I find myself making lots of lists lately, it's just my reality, if I don't mark it down, it doesn't get done. I read once that you have an 80% better chance of achieving your goals if you mark them down. Ok, now I'm babbling...it's what I do.

SO the list was really two lists, one for things I wanted to get done around the house and the other was a list of fun things I wanted to do this summer.

On that list was the carnival! For various reasons, we haven't been since Ruby was born..so I thought we should make it a point to get there this year. Well , I got to cross it off my list when I found out there wasn't going to be any carnival this year! Instead this year they had the "Lobster Festival", which when I think about it,  most certainly tops the carnival which let's face it, is sketchy at best!

So as part of the festival they had various activities going on in our big metropolis all week. Last Friday they had giant bouncy houses, a huge sandpit with castles made by Maurice Bernard (  very talented local artist ) and a big tent with live music all set up down at the boardwalk.

SO we thought, let's give it whirl! 

When we drove up and Porter caught sight of the castles, I thought he might flap right out of the car he was so excited. It was everything to hold him back until we got there.

Then the catch.

Line-ups.

Of course there HAS to be line-ups, I teach elementary school, I get it, if there were no line ups, well, I am quite aware of the chaos that would ensue. But my boy is not a fan of line ups, it's not so much the lining up, but more the WAITING! He hates it. I mean, he really hates it.

They were letting about 6-7 kids in at a time. But of course as soon as I let go of Porter's hand he darted in the castle before his turn. This kid is quick, quick I tell ya! So I send Mark in there to get him because I am wearing a dress and thought I'd spare the spectators of a front row view of my behind. So it took a few minutes but Mark gets him out and of course Porter took it very well ( yes, that's sarcasm). At this point Porter is having a mini meltdown and then the next 7 kids are allowed in, and Miss Ruby was in line, so she got to go in.

So now Porter is crying and trying to break free of our grasp so he can go in too...but it's not his turn. He took his turn when it actually wasn't his turn :)

And then a random act of kindness.

An old friend that I went to school with was there with her 4 beautiful children. She offered to have her son come out so that Porter could go in.  I didn't let her do that of course, but I tell you, her kindness won't be forgotten.  And she didn't make me feel like it was because Porter had autism either, she said " well, I just thought he might like to go in with Ruby".  I wanted to hug her. I wanted to say thank you..thank you for not looking away, or silently judging me, or pitying me.

We didn't stay much longer, we went over to the sand where I had a small panic attack as I watched Porter running over the hills,  steps away from destroying all of Maurice Bernard's amazing sand castle art! Nooooooo!  Thank God I caught him in time!

And that's when we decided to go home :)

We gave it a whirl!

So old friend, thank you for offering to help. It meant so very much to me. I couldn't say this to you that day because I would have cried, but I thought you should know.

Treasured Memories

Yesterday marked the second anniversary of my Dad's passing. I said each year that I would share a memory...I guess it's my way of keeping him alive. Porter and Ruby will likely not remember their Grampy, but this way, they may feel they know him in some way.

So about 10 years ago Lisa and I were visiting Dad at his apartment.  I'm not sure how we came across it, but we found a binder filled with letters, cards and drawings that Lisa and I had sent him throughout our childhood. This binder stayed with Dad for more than 30 years. I remember how it touched me. And now, what a treasure indeed.

There were several letters and cards, but here are a couple of my favorites:

I thought I was pretty clever using pictures for words and saying " see if you can figure this out"...haha. That sentence was actually written in silver marker, remember those markers that you used to have to shake before they would work? What ever happened to those?


And there were lots of letters like this one written Feb 4th, 1986.  I would have been 10 years old:

Unless you have a magnifying glass, you probably can't read that. So let me share ( I'll keep the spelling mistakes in so it is completely authentic):

"Dear Dad,

I usually start with "hi, how are you, fine I hope" so I won't because I think that is getting boring. So I'll start with How's the weather? Are's is ok I guess. It's always cold in the morning when I walk to school, but I'm usually warm because I'm dressed warm. Well I hope you are doing o.k. I know you are not going to like what I'm saying next but I'm just trying to start a conversation. The kittens are doing great, there both lying on the tub chair licking each other. ( This is an inside joke because my Dad hated cats, although I think he secretly liked them:)  My room stays pretty neat now.  School is doing fine. Nanny MacNeill is doing fine too. I'm in a play tomorrow called Cinderella, it's in french. I'm a stupid stepsister but I do have alot of lines. Well I'm absentminded of what to say so I better go. I used absentminded because I just learned it in school.

See ya soon

Love always, Raelene

I added " Don't mind my messy writing" and lots of hugs and kisses on the bottom:)


Isn't that a hoot? Every now and then I take the binder out and read through the letters and every single time, it fills my heart in a way I can't describe.

Thank you Dad.

xoxoxo

Project Lifesaver

Well, we finally did it.  We've been talking for months about getting Porter a GPS tracking bracelet through Project Lifesaver, but today we actually did it.  Those of you close to me probably remember Avonte Oquendo, the boy with autism from New York who tragically went missing from his school back in October. His body was later found  ( after more than a 3 month search ) along the East River.

It has been since then that we looked into Project Lifesaver. We knew Porter would not be a big fan of wearing this bracelet , so the original plan was to slowly get him used to the idea of wearing it by first wearing a plastic watch or bracelet and letting him keep it on longer and longer each day.  We went through quite a few different possibilities and of course he kept taking them off. So we basically decided that we should just go ahead and put it on.

If you're wondering what it looks like or how it works, I've taken the next paragraph directly from the website. ( if you want to learn more, click here . )

How it works

"Citizens enrolled in Project Lifesaver wear a small personal transmitter around the wrist or ankle that emits an individualized tracking signal. If an enrolled client goes missing, the caregiver notifies their local Project Lifesaver agency, and a trained emergency team responds to the wanderer’s area. Most who wander are found within a few miles from home, and search times have been reduced from hours and days to minutes. Recovery times for PLI clients average 30 minutes — 95% less time than standard operations."

I have been dreading putting in on Porter because this is a boy who has a lot of sensory issues and would gladly be naked 100% of the day because even his clothes drive him crazy! So we have been putting it off. Then on Canada Day we went to visit family at Marco Polo Land. It is like Disney Land for kids really, so much to do there! Anyway, we were at the park and Porter was having a blast running up and down the slide and then it happened. We turned our back for less than 5 seconds and he was gone. It was probably no longer than 30 seconds until we spotted him running like the wind, he had crossed one of the roads, passed a row of campers and was running down a hill through the trees. Thank you Lord.

So that was it. I called the next day.

So we had two special guests come see us today. Top shelf people. Porter wasn't in a great mood to begin with, but we gave him a popsicle and they put it on him while he was distracted. Nothing. He sat and ate his popsicle and maybe glanced at it once. Seriously???

But when the popsicle was gone he did get a little upset. We decided not to give him too much time to think about it. It was Ruby's nap time, so Mark took him for a drive. They went to the park, Wendy's for fries outside on the picnic table and then a walk on the boardwalk. Doesn't get much better than that! haha Later when Ruby woke up, we took a drive to Gateway Village and played at that park for awhile. He hasn't had a lot of time to really think about it, but he has taken our hand a few times today and put it on the bracelet. This means " take it off mom and dad!!!". I keep telling him that this is his special safety bracelet that stays on ( it literally has to be cut off to remove it).  Then at bedtime he got a little more upset and tugged at it for a couple minutes, but that's it. I'm not kidding myself that this is it, but so far, it's going a gazillion times better than I thought it would!

We may be frequenting many parks this week:)  Here are a few pics from today.

The boy loves a swing!

FRIES!!

Classic Porter! 

Close up of his new hardware!

I hope and pray that we will NEVER have to use it and it certainly isn't going to protect him from all of the potential dangers he could face, but it is a little more peace of mind.

Curly Sue!

Lately Miss Ruby has been cracking us up with the funny things she is saying...this week I thought I might eat her when she came out with this one morning while shaking her head:

" Mommy look...my hair....it wiggles!"

Yes that's right our girl is finally getting some hair. I've started to call her " Curly Sue" on occasion.


You may recall how much hair she had last summer...

My what a difference a year makes....check out her curly locks now!

I think it may almost be time for a trip to Auntie Lisa's hair shop!