More sounds

Remy has been doing great!

We still have many challenges such as sneaking food at every opportunity, overstuffing mouth when eating, wetting bed at night, etc, but let me share some areas of growth.

In the beginning of July, Remy started going to another centre for IBI, and she seems to have adjusted well.  It's a different place with different people and different routines, but he seems to adapt well.  That's what I hear and observer over and over again.

When walking in public or even at home, Remy has been listening and responding more.  For example, the hat falls off the baby's head, Remy would pick it up and place it back on the baby's head.

One very notable incident was just this weekend.  Remy was eating nachos when the baby appeared in the kitchen.  We asked Remy verbally (without physical prompting) to give one to the baby... he did just that!  He gave him ONE. Not two, just one :)

We clapped and gave him high fives!

Since seeing Remy was producing more sounds (that he was not even practicing at "school") after continued and consistent application of doTERRA vetiver essential oil (you can find out more here), I've since started applying to more than just his feet and his nape.  He really seems to enjoy this and even prompts me to put oil on him.  I also use InTune and Frankinsence with him regularly.

His sounds are coming through "ba" "deet" "sh" "s" "f" "v" - and today he said "banana" loosely but it sounded pretty good to me :)

As well, he's been using his iPad mini to communicate more.  Most notable was this weekend at the local RibFest.  He asked several times for water!!!!  well, of course!  it was so hot under the sun.  I am so proud of him.  Not only that, he also put together two words on his iPad mini "play balloon" after a kind man from a booth gave the children all a balloon each.

One thing I'd like to address for Remy is his diet (yes, it's his diet again/still).  I think he would be healthier and more likely to learn better if he carried around less weight.  As well, I think a diet that addressed  his weight would also address the very itchy and score skin on him - call it eczema, whatever you'd like, but it's not fun.

Thanks for reading!  Seize your day!

Isms Past and Present (Part 1)

As all parents of children with autism know, our kids have some pretty unique repetitious behaviours.  These behaviours can be cute, annoying, self-injurious, subtle, and very peculiar.  There are different ways to look at these behaviours.  Some people call it stims (short for self-stimulations), but I've come to call them "isms" as coined by the Kaufmans when they were recovering their son, Raun, from autism.

I reflect back once in a while to see how Remy has evolved with regards to his isms, and I wanted to share my observations with you.

Present Isms

Remy's Current Top 5 Isms:

1.  Rips paper

He started ripping in the Spring or early Summer of 2011.  At the time, he started ripping coloured construction paper in the Play Room.  If he couldn't get a hold of something of a thin texture (like newsprint or computer paper) to rip, he would resort to cardboard and plants.  In fact, he ripped SO many plants that we did an impromptu plant sale last Fall. 

His ripping preference has evolved, though.  He now chooses to rip only new colouring books or books of that material.  His dad calls him a paper snob. 



What do the rippings spell?

"My name is Remy" "I love to rip"

2.  Vocalizes loudly

This ranges from yelps (people have commented over the phone, "is that your dog?") to sounds like "up a hoo".  He also laughs and giggles uncontrolably sometimes.  We've come to deal with his early morning or in-the-middle-of-the-night bursts of vocal babble.  We accept it.  I am very grateful to Remy's dad for masking his noise level to let the rest of the house rest.

3.  Holds two items

I've noticed since March 2012 or so that he's been consistently holding one item in each hand.  Now, the evolution of items has certainly changed.  I think it started out with two small metal cars (you know, the Hotwheels and like cars), then two stuffed ducks, one stuffed bear and one monkey when the ducks were in the wash... he's currently holding a toy train and a small plastic rooster (that we refer to as a "chicken").  These items change all the time.  But we have noticed that he will get very upset if he cannot find one or both of the items.  The items in the hands are like a security blanket for him.

Notice the two small cars in front of him

4.  Flings water

So when he goes to the washroom to wash his hands, he's actually got the two items IN his hands while turning on the facet, washing his hands, turning off the facet and then FLINGING the water off his hands and toys (the items)!  He whole bathroom floor and vanity get soaked.  This is one of the challenges that Remy's dad and I have been working on.  How do we control the situation?  Well, right now we try to lock the bathroom door.  Yes, this does create some inconvenience - a topic for another post.

5.  Eats from the cast iron pan

It seems to be that he's been doing this as long as he's been ripping.  Fortunately, he knows how to be careful with the heat from the pan.  When we serve him food in a bowl, he'll start eating, but if that food gets a little cold, he'll bring his bowl of food over to the pan and pour it in.  He even takes out a clean spoon or a wooden spoon to eat from the pan!



What's in the pan?

These are the top 5 isms that still go on every day.  Things change over time.  I believe that these isms serve a purpose whether they are for self-soothing, a developmental purpose or just a habit of enjoyment.  I do also believe that if the underlying need for them isn't there, the ism itself would also no longer be needed. 

I accept and appreciate my son's isms, and see them as a way of understanding my child.

Seize the day!

Letter to Remy August 10, 2011

Dear Remy,

We're already into August, Buddy, and we're looking forward to starting our new SRP year with our wonderful new volunteers!  You charmed them with your special presence, and you made them sweat last week, so now they're coming back for more :)

Let's see what's been happening since my last letter in December 2010.  Well, let's start from what's going one now.  Let me tell you about the things you really like doing:  ripping, pouring, stripping bed sheets and wrapping them around you, flicking stick like objects, eating a lot (you've always like to eat a lot just like your parents), squeezing people and getting squeezed, and wagon rides.  Of course there are more, but these are most prominent.

Oh, I must also mention that I just noticed your wiggly front teeth yesterday, and today one of them already looks like it's going to fall off.  I asked your dad where the tooth would end up.  He hypothesized that you would either eat it or bring it to me... he later also added that you  might flush it down the toilet.  I hope you end up giving me the tooth.

Your eye contact is amazing!  You simply have to just look at me with your beautiful bright truthful brown eyes, and whatever ounce of annoyance I might have been feeling from cleaning up your rippings or your pourings or your peeings, just vanish.  Your eyes have already dazzled the wonderful young volunteers.

We know that you want to connect with us.  Mommy knows that you are trying your best to be part of our world.  You practice talking, which may be mistaken for babbling and making weird noises, but Mommy believes in you.  Keep trying, Buddy.  You're doing a great job!  Just a couple of days ago, I was scrubbing the bathtub when you came into the bathroom, looked me in the eyes, grabbed my hand and said "hal" - I think you were asking for "help".  It was an ah-ha moment.  I understood the sound that you spontaneously made to make me aware of your need.  Thank you for expressing yourself, Buddy.

I know that you know what I talk about.  It's absolutely incredible how much you understand.  In the Spring when it was finally warm enough to go for wagon rides, you would hop into the wagon almost ALL the time even though we would be out for over an hour.  It was very challenging to get you to go back into the house or into the car.  I would use my physical strength against your will to carrying you out of the wagon.  Well, you've since gained about 10 pounds (this seems like a lot - your dad and I have been discussing what we're going to do about it) so really it's to no benefit for my back to carry you against your will.

On several occasions now I've asked you to look in my eyes while I explained, "we have to go inside now, Remy.  We'll come back AFTER.  Mommy needs to go pee.  Let's go inside, Remy."  And even if you don't look at me, you do get up out of the red wagon.  When this happened the first time about a couple of months ago, I was amazed and very grateful.  Remy, you understand me.  Thank you.

There have been many other occasions and examples of how you understand English (or Chinese).  Sometimes I would say phrases to you that I have not said before or in a different context.  For example, one day upon leaving the house, I asked you to grab "the bag".  You stopped, turned around, looked for a bag, found a black bag hanging on the easel, took it down and handed it to me.  I celebrated!  I love these moments.

You get along really well with your sister.  I must say that out of everyone in this house, although we all practice being nonjudgmental, Sister is truly nonjudgmental and can thoroughly communicate with you.  She forgives you for hitting and squeezing her too hard, eating her food and ripping her crafts.  She sometimes blames you for things you have not done - what are siblings for?  Your relationship warms my heart.

Things I am grateful that you do:

• go to the toilet by yourself
• pee whenever you need to but hold it in most of the time
• seek people's attention
• lead people by the hand
• eat independently
• walk and run healthfully
• wash your hands when I ask you to
• give hugs
• smile and laugh causing others to smile and laugh too
• eat fermented vegetables as well as raw vegetables
• show your own will
• understand me
• try and try
• take care of yourself (problem solving such as going into the freezer to get ice)
• take a shower when dirty
• signal that you need to do number two and then just do it behind closed doors

I am grateful for you and all that you teach me, remind me of every day.  You and your sister are the sincere truth of life.

Every day is an adventure with you and your sister.  I have felt best about being me in the last two years.  When people ask me if you go to school, I tell them that you go to school with me in your special home play room.  The truth is, you are my teacher, and I have learned more from you than I have ever have in school.

Remy, you have grown so much!  I remember giving birth to a baby of average weight and size.  In two months time you ballooned into a huge baby, and since then have only grown taller, bigger and heavier.  Not only have you grown physically, you are more intelligent every day.  You are bright, loving and sincere.  Even in my imperfection (sometimes I'm rushed to get out the door when we're late taking Sister to school), you show mostly patience and sometimes whiny frustration.

Thank you for your kindness, your sincerity, your genuinely love of life unconditionally.  The stars of wisdom shine on me from your honest eyes.  Our sit-down eye-to-eye lunches the last 3 or 4 weeks have been intimate and full of connection without talking.  You are the moving stillness that I wish to hug.  Thank you for your patience with Mommy, Remy.  Sometimes I get all tangled into stress preparing supper, doing laundry, sweeping up your rippings, cleaning up your spills, helping Sister... all at the same time.  Multitasking is not very effective, Buddy, but it's seems to be inevitable for mothers.  All I can do is prioritize tasks, and trust that you turn out fine despite the after school-before-supper time.

Thank you for being you, for showing me The Present.  Keep growing, as I shall also grow with you.
-Mama