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!

Porter turns 5!!!

Just writing that title blows my mind. How can my boy be 5??  Wow, I remember so many people telling me that once you have kids time will go by so fast. Turns out, they're right. It seems like just yesterday we were bringing him home from the hospital. Sigh.

I often find myself like most parents wishing time would slow down. But lately, this feeling has been overwhelming. Last week we took Porter to Kindergarten night and never have I wanted to step into a time machine more than at that moment.

He's not ready. I'm not ready.

I remember when we first got Porter's autism diagnosis, I thought .... well he is still only 2, we can work really hard and maybe he will catch up by the time he gets to Kindergarten.... you read these stories all the time. They give you hope and punch you in the gut at the same time.

But I'm learning. I'm learning not to compare. It  really is never a good idea in general. But when you have a child with special needs, it can be extra hard. You see all the other kids and everything they are doing and a familiar lump creeps up in your throat and can make you feel like you are getting the diagnosis all over again.

But when I don't compare him to anyone else but his magnificent self,  I am filled with gratefulness and pride. It wasn't that long ago that I was sitting on my kitchen floor with my dear friend Heather
 ( who happens to be a behavioral analyst who works with children with autism in Ontario ) and we must have worked for 2 hours trying to get him to sign "freezie". That is the thing about autism, without even knowing it, it makes you celebrate moments that are ordinary for everyone else, but extraordinary to you. ( he did it by the way:)

So my boy turned 5.

He has come so far. I am so very proud of him.

We celebrated his birthday with family and this year, we had a special guest. Porter's IBI tutor who we are so blessed to have in his life. She does photography on the side and agreed to come and take some pictures of his special day.  She captured him perfectly. She shared a sneak peek with us, but unfortunately they won't load up here , I'm guessing it is because I don't technically "own" the rights to these pictures yet. If you are on my FB, you can go to my profile and have a look.

In the meantime, my sister captured a few great shots with her phone. We were fortunate it was a nice day, remember that weekend when you didn't need a winter coat?



                                                                           Porter loves his swing!

                                                                         My personal favorite.....

                                                                  Ruby doo was having a great time too!

                                                 

Happy birthday my beautiful boy. I am so proud of you and can't wait to see everything you will learn in Kindergarten! You will be in the very best of hands :)

Remembering Nan

                                     Frances Mae MacNeill ( Holland)  - March 9th, 1919- March 26th, 1994


I couldn't let this day go by without a small tribute to such a fine lady, my Nan. Today marks the 20th anniversary of her death,  March 26th, 1994.

I think I have mentioned before that when we first moved back to the Island we stayed with my Nan for at least 2 years.  Nan was like a second mother to me. She and I had a special bond. She always knew just what to say and always made me feel special. I remember when I was sick I would stay with her during the day and she would give me this brass bell to ring when I needed her. And when I would ring it she would come running and say in a pretend English accent "you rang , me lady" or something close to that...I would giggle and I'm sure I must have drove her crazy ringing that bell, but she never let me know it. And she always seemed to have a fun game to play. I remember when she showed me how to make card houses using a deck of cards and I would sit on her living room floor for hours building the coolest card houses ever! Something about Nan's house made you feel better, taken care of. I can remember being in my late teens and still when I went to visit I'd get that peaceful, easy feeling as soon as I walked in the door.

Regretfully, I don't have a lot of pictures of my Nan but thought I'd share this one of Lisa and I and the story behind it , because it sums up the kind of person my Nan was.

The picture quality is poor but anyone who grew up in the 80's knows what Lisa and I are holding. Cabbage Patch Kids!! They were all the rage and they were a very hot item! After waiting what seemed like forever we finally got them! I think there was a sale on at The Met. All I remember is Mom holding the boxes out and saying " I got the last two girls"! AND we were pumped! While I stood there with a huge smile, taking in this incredible moment in my life Lisa was up and grabbed her favorite before I could say a word. Now you can't tell from the picture but my Cabbage Patch kid didn't come with those pony tails. She had short hair and as happy as I was to finally get my Cabbage Patch Kid, I kept looking at Lisa's doll and hers had this cute pony tail and I couldn't help but wish that I had picked the one with the pony tail first. Nan noticed this and said she could fix the problem. She went to her closet and just happened to have yellow yarn that matched almost perfectly to the hair on my doll's head. I can remember she spent hours in her rocking chair that night cutting and knotting each new strand of "hair" until my Cabbage Patch had two beautiful blonde pig tails! I was beyond thrilled with her new look!

That was my Nan. Always making things better.

Love and miss you,

xoxo

Avonte's Law

Had to share this update.

Change is happening.

http://www.autismspeaks.org/news/news-item/quotavonte039s-lawquot-looks-fund-tracking-devices-children-autism

Avonte Oquendo

Avonte Oquendo

1999-2013

You may or may not have heard the tragic story of Avonte Oquendo.  On October 4th this boy left his school in Long Island NY and appeared to have simply vanished without a trace. For months, his dear family and the good people of New York searched tirelessly, hanging on to the hope that he would be found alive. What made the search so desperate was that this beautiful child had severe autism and could not speak to ask for help or understand the dangers of being alone in a cold, big city. Tragically, on Jan 16th, the search came to an end as remains were found along the shoreline of the East River, 11 miles from his school. On Tuesday, DNA tests confirmed it was indeed Avonte.

I remember the day I first heard his story , I felt my heart sink as I watched the surveillance video of him leaving his school and running across the road. I never met Avonte, but I felt like I knew him. If he was anything at all like my boy, he loved to run and he didn't understand the dangers that he could face.

In the days that followed,  I found myself feeling a sense of panic but at the same time, I was filled with hope that he would be found. I watched the surveillance video over and over again.  I'm not sure why, maybe in some crazy way I thought I would see a clue that would explain where he was or perhaps I was trying to make sense of how this could happen?  I joined the facebook group (Bring Avonte Home) created by volunteers to organize searches and spread the word that he was still missing. Many of its over 20, 000 members were just like me, mothers of children of autism who felt a connection to this little boy, a boy like ours. As the days turned into weeks I found myself waking up in the middle of the night and checking the group, hoping to see that they had found him. I can honestly say that this boy took over a part of my heart. He was a boy just like mine. I watched his mother on the news and admired her strength and her faith, never wavering until the very end. A mom , just like me.

I read an article today on the FB site that compared the tragedy of Avonte Oquendo to September 11th in how this boy was able to bring a whole city together. Hundreds of volunteers gathered nightly to search, more put up his missing flier around the city and thousands shared his missing poster on social networks. The city even shut down the subway system to search every tunnel as Avonte was known to have a fascination with trains. Police were circulating the city playing a recording of Avonte's mother's voice asking him to come toward the lights as they feared he could be hiding, scared of the lights and the noises. Maybe it sounds a little crazy, but I completely agree with the comparison to 9/11. I remember the days that followed September 11th I spent my time glued to my television watching CNN and feeling this huge sense of sadness. I would see the devastation but then be moved by the story of a man who survived 5 days trapped in the rubble. Beauty through the darkness. For me, it was almost similar, only this time I would spend my evenings after the kids went to bed, googling his name for any updates or on the FB page reading the hundreds of comments from people just like me. There we were, united in our love for a boy we never met. Hoping for light in the darkness.

What makes Avonte's death so very hard to comprehend is that it simply shouldn't have happened. From what I have read he was supposed to have an aide ( US term) with him at all times as it was well known that he could wander off. I can't quote the exact details of what happened, but something went terribly wrong. Not only was he not being watched but he was able to pass a security guard twice, TWICE without being stopped. The guard later said that she thought he had run back upstairs. When they realized he was missing the school waited almost an hour before calling police and it took them almost two hours before they were able to view surveillance video which clearly showed him leaving the building. Two critical hours that could have saved his life. I am trying not to think about it because when I do, it literally makes me feel nauseous because this school sounds like it should have been safer than any school I know of. And yet, this still happened.

At times like these I try to understand why such tragic things like this happen. And there are no reasons. But even in the darkness, there is light. I believe this boy will save many lives. I believe that Avonte was a very hard lesson in autism awareness for so very many people. I know that because of Avonte , we have decided to order Porter a tracking device. You can read more about it here. Hopefully we will never need to use it but according to a recent study, over half of all children with autism will wander and bolt from safe places.  Those are very scary statistics. I believe that because of Avonte thousands of  educators will be more aware of the vulnerability of children like Avonte. I believe that because of this beautiful boy with eyes that capture your soul, there will be change. 

Rest in peace sweet angel. I hope you are running through endless fields, your voice no longer trapped inside you.

If you would like to sign a petition that was created in honor of Avonte that would allow an amber alert to be issued for vulnerable children and adults like Avonte, please click here.

Pat Sajak and PB & J Sandwiches!

I'm not sure if anyone remembers, but I said that each year I was going to try and post a special memory about my Mom and Dad on the anniversary of their deaths. Hard to believe it has been 8 years since my mom left this Earth. But it has.

I can remember being in grade 5 or 6 and living in the trailer park a hop -skip- and -a -jump away from my elementary school ( how funny that I would grow up to teach in that very school.)

But as I was saying, I lived very close to school and some days I can remember going home to have lunch with my mom. It wasn't anything fancy, usually a peanut butter and jam sandwich, but we would always sit and watch Wheel of Fortune while we ate. It seems funny now, that I would be such a huge fan at my age, but I would get a quarter for every puzzle I answered first and I loved the challenge! I can remember being so proud of myself when I would win. My mom always told me that I was really good and should go on the show when I got older. (It is on my bucket list, I hope to get there someday!)  But it wouldn't be near as much fun now that you just win money. Back in my day you got to choose from a variety of luxury items! I can remember my mom saying "oooh, I'd definitely get that new couch and loveseat and that bedroom set !" I wonder what my teachers thought when I would come bouncing back to school announcing that  "I just won 50 cents playing Wheel of Fortune!"

Love you Mom, I cherish the good memories always. xo

Merry Christmas! ( Yes, I know I'm a little late:)

Another joyous festivus season is behind us ( those of you who are not Seinfeld fans won't get that). No, I really do love Christmas, most of it. I love being an Elementary School teacher at Christmas. Yes, they're excited , hard to focus and you can pretty much throw your lesson plans out the window...but to be part of that excitement is pretty amazing. The innocence is quite beautiful really.

Here at home, Christmas brings with it a mixed bag of emotions. It always has and maybe it always will...and that's okay.

This year, my uncle Leroy passed away less than a week before Christmas. I felt so sad for my dear Grammy who lost yet another son, way too early. I did have many signs that our loved ones live on beyond this Earth, including finding an old Christmas card from my Dad on the very morning of my Uncle's funeral. Yep, that happened, two days before Christmas.  Also, I received a gift that felt like in some way was from my Dad. It really made me feel his presence on Christmas Day ( thank you Aunt Gail:). And if you pay attention to signs and are really open to them, you will find them everywhere. Like this one:

Porter was OBSESSED with these ornaments this year. They are so very precious to me and apparently, him as well.  I believe my Aunt Lynda made these ornaments in the early 80's for everyone in my mom's family. They were always on our Christmas tree growing up and when Mom passed away I asked Lisa if she minded if I took Mom's bell. They always make me happy/sad when I put them on the tree. But this year, Porter took a real liking to them. He was forever walking around with both of them, banging them together as if he was making them chime. He even cuddled with them on his favorite chair. Mom is always here, I know she is.

       Seriously look at that face, pure joy! Hard not to find some Christmas spirit looking at that sweet smile!


But honestly, Porter could care less about Christmas. In fact, give him a popsicle and those bells and Santa could come everyday! It makes me happy/sad. ( I guess I'm making that a word, maybe I should put a hyphen instead, happy-sad...hmmm) Ok, back to Christmas. He just doesn't get what all the excitement is about, he really doesn't.  When we sit, anxiously awaiting that burst of excitement when he opens a gift and it doesn't come, it is sad. It makes me sad. Sometimes I feel like autism has stolen so much more than his voice.

But he did enjoy a couple gifts this year. Santa brought him this play mat to drive all his cars and trains around. Not that long ago he would have wrapped it over his body and used it as a blanket. Christmas day he knew just what to do. Progress!

Miss Ruby is just starting to see what the fuss is all about. She was pretty excited when Santa brought her a crib for her baby and a sweet little baby carrier. Wow, Santa sure does know what Ruby likes!

                   She just loves her baby! It's so funny listening to her talk to her baby and be her "mom".


Later that day, we hosted all the Richard's here for Christmas. Luckily Mark's mom did most of the work because I know this may come as a shock, but I'm not really that much of a chef! But it really was great seeing everyone and not having to worry about what my kids were into, wait let me rephrase that, it was nice knowing that whatever mess they made was in our house, they're always into something:) Here are a few pics:

                                                     Barb, taking over my kitchen..thank God! :)

                                                       Yummy! Everyone enjoying a beautiful meal.

                                          
                                                         I wonder what was on TV?? And why is everyone standing? haha



        All in all , it really was a lovely Christmas. Just happy-sad. More happy though, definitely. I hope all of you reading had a lovely Christmas too! Here's hoping 2014 is good to you!

xo