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

Brothers and Sisters

Dear Ruby,

There will be many days you will doubt your brother's love for you. I could share some stories about your Aunt Lisa and how she loved to hide in my closet at night or pretend that she wasn't really my sister because the aliens had come and taken my real sister...yes, many days where I didn't feel that "sisterly love". But when the chips were down, she was there. She's my sister and of course she loves me. She has to:)

Your brother doesn't quite understand how to play with you just yet and it is hard for him to tell you how much he loves you. You on the other hand, are relentless in your pursuit to make him your best friend. You keep trying. You never give up. It's beautiful to watch you, your heart so pure, so open and forgiving. It's easy to see how much you love him.

Last week, Porter did something that proved how he feels about you. I was at work finishing up some reports and you had just woken up from a lovely nap. Daddy was busy in the kitchen and didn't hear you crying...but Porter did. He ran to the kitchen and grabbed Daddy's hand and brought him to your room.

He loves you. You are his little sister. He has to:)

Miss Ruby turns 2!

So our Miss Ruby turned 2 on Oct 10th. We celebrated with family last weekend on Thanksgiving Monday which was the same day our little turkey was born. Wait, how did that happen on the calendar? Hmmm...must google that later.

I decided to actually pick a theme, other than my usual Dollarama themed party:) Ruby is a huge fan of the Backyardigans and the Bubble Guppies so we went to the Internet to see what we could find and ended up finding a great deal on Backyardigan party supplies.  Decision made!

Then I got to work making this cake:

Hahaha! Who am I kidding, I ordered it! Isn't it adorable? ( Tara's Cake Creations on Facebook if anyone is ever looking...)



Ruby arrived with Nana and Pepe who picked up both kids earlier that day so we could get the house ready.  Because let's face it.....

But I digress....



                         As I was saying, Ruby arrived with big brother Porter ready for a party!

Thanks Nana and Pepe for the adorable dress! She tried to put a barrette in her hair too but Ruby doesn't quite have enough hair to hold one in just yet:)


Ruby's eye went right to Pablo who came for the party! (p.s. she has been dragging this balloon around the house ever since. It even had to sleep on the floor next to her with it's own blanket and pillow the first two nights!)

           She loved having a room full of people she loves. Here are a few pics from the party:

                                        Happy Birthday sweet Ruby. I love you noes to toes. xo

New Learning Story!

I have shared a few of these before, I can't say enough about how much I love getting them ! Porter LOVES to scoop and pour just about anything! Honestly, he would sit and transfer water from cup to cup forever if we let him! He just loves watching it fall, I think he finds it very soothing.

This learning story shows him pouring a cupful of rocks down a slide, not surprisingly, one of his favorite activities when he is outside!

So happy that our boy LOVES his preschool! We can't believe he only has one more year left before he goes to big boy school! 

PSEUDOCHOLINESTERASE DEFICIENCY

So I don't make it a habit to post my personal medical history but I'm going to make an exception today. I just have a gut feeling this should be documented for future reference for myself and Porter and Ruby.

So most of you that read this blog know that I had a hernia repaired earlier this year. When I was pregnant with my giant beautiful baby Porter, he stretched my stomach muscles apart and unfortunately they did not go back together after he came out in May 2009. This caused a hernia that got worse over time. I had to wait until after Ruby was born to get the surgery to repair it ( as it would only get worse with each pregnancy) . I then had to find someone that was willing to do it and long story short, it was finally repaired in January of this year. Everything went well and I was super pleased with the results.

Shockingly, my muscles were very weak and it started to slowly come back out.  ( Yes, that is sarcasm). Anyway, I was on a waiting list to have it repaired again, this time they would put in a mesh to reinforce it .  I got a call last week, there was a cancellation and I could have my surgery Friday Aug 16th, which worked out perfectly, I wouldn't need to take any time off of work!

So fast forward to surgery day. I was scheduled to go in at 1pm. It's 1:15 and I'm still waiting and ready to eat my johnny shirt since I hadn't eaten since 8pm the night before. They tell me that my doctor is running behind and there is a possibility of it being cancelled. I'm super happy about that as you can imagine, but after fuming silently to myself for a few minutes,  I decide that if it gets cancelled there must be a reason...and to trust that it will all work out.

Shortly after 2pm my doctor appears, draws some lines on my lovely bulge and we're off to the races! Now here is where the story gets interesting...I remember waking up, well sort of, after the surgery and having someone yell at me. Then someone grabs my chin and I don't remember much else until a little later. Apparently they took my breathing tube out and realized that I could not breathe on my own, so they had to shoot me up with more anesthetic to put a breathing tube back down my throat. This anesthetic paralyzes you, every bit of you, including your lungs.

 I don't know exactly how much longer after they administered the second round of anesthetic, but I estimate it was between 4 and 5 pm  that I am fully and completely awake but unable to move any part of my body. A machine is breathing for me but it is not enough! Or it certainly does not feel like it is enough. I count 6 seconds and I get the tiniest burst of air.  I count again 1, 2, 3 , 4 , 5, 6 ...puff...there it comes. BUT IT'S NOT ENOUGH! IT'S NOT ENOUGH!! I CAN'T BREATHE! I CAN'T BREATHE!! (Sorry for all the yelling, but caps lock doesn't even begin to express the panic that is going on in my head !! ) I am trying with all my might to move any part of my body. Nothing.

Then I start to think. "Oh my God, I'm dead..is this death?" Am I stuck in pergatory? In my head I am saying "Mom, Dad if you are here...help me! HELP ME!!!!!!" Nobody appears so I start praying and telling God that I need to be on this Earth and He needs to help me move my body so I can tell someone that I cannot breathe ! I'm not sure how much time passes, I hear the nurse calling my name and speaking to the other nurse " I've given her another sedative but she is still not sleeping". OF COURSE I CAN'T SLEEP!!! Honestly, as I type this,  my heart is pounding just thinking of the terror I felt. Then I hear Mark, he is there. He is asking how long I will be like this. They suspect it will be most of the night and tell him to go and come back in the morning. Just when I think I cannot panic anymore, it gets worse. I am screaming in my head but nothing is coming out. I am trying to communicate telepathically to Mark but it's not working. Mark said he left around 7pm. All I can think is there is no way I will survive the whole night like this. The little bursts of air I am getting surely can't be enough to keep me alive all night. I will die. Or I will get brain damage. And there is nothing I can do but sit here and wait.

Then some time after, a glimmer of hope, I can move my tongue. But just a little. I start moving it in and out which in hindsight must have looked ridiculous. Like a lizard or something. But in my head I think, ok, if they see me moving my tongue like this they will realize I am in distress and give me more air!  A nurse comes in and I try so hard to move and I think my hand twitched. She calls another nurse and and says "perhaps we should give her another sedative, I don't like this twitching". Then more panic sets in, because I have no idea why I am paralyzed so in my head, maybe it is the sedative? So I stop. No more lizard tongue. I wait. I panic and wait. I talk to God. I think of Porter and Ruby and Mark. I pray. I am crying in my head but there are no tears. I count 1, 2, 3, 4, 5, 6 puff.

Then finally at 9:45 pm , I can move my arm. The nurse comes in. I can't open my eyes or do anything else but I can move my right arm. I motion that I need a pen to write down something. She gets a pad and I write down that I can't breathe. She calls another nurse in and I write it again, I can't breathe, take this tube out! She gets the doctor and thank God, they take it out. I cough up a whack of phlegm and then there it is...sweet glorious AIR! I can breathe, I can breathe! They put an oxygen mask on my face and more AIR! Ahhhhhhhhhh! Then slowly my body starts to wake up, my eyes are still shut but I can feel my feet and eventually everything. I cry, I hold back the ugly cry.  I can't describe how grateful I am.

I have the mask on and my eyes are still shut but I feel the need to keep writing on that pad. I tell them that I thought I was dying and that I am so grateful to be alive. They explain what they think happened. It's called pseudocholinestrase deficiency. I have read a few different websites but this one sums it up well.

http://ghr.nlm.nih.gov/condition/pseudocholinesterase-deficiency

I am getting bloodwork to confirm that this is indeed what I have but it is also hereditary so I just felt I should post it here. We will have Ruby and Porter checked as well, but even if it comes back negative for them, I want this to be in print so they can be aware that this could happen in their future, after all, I have had surgeries before and have never had a reaction like this??

I also read on a different website that someone with this deficiency should never use cocaine as they could go into cardiac arrest. PORTER AND RUBY, I pray that you will have the wisdom to never try such a dangerous drug, or any drug for that matter, but PLEASE do not risk your life!

I also can't help but think that this may be a piece of the puzzle in understanding Porter's autism. If you are deficient in this enzyme you cannot break down certain toxins well. There is an abundance of research that suggests that people with autism have more toxins in their body, they are unable to get rid of them like the typical person. This enzyme is also believed to be involved with nerve signals. NERVE SIGNALS! There are some wires that are not connected properly in Porter's brain. They stop him from speaking.  Could this be part of the reason?

Anyway, I will get the results of the test and then go from there. I believe everything happens for a reason. I hope this day of terror will turn into something that can help my boy.

Now, take a deep breath...you feel that? That is air running through your lungs. Be grateful.