Getting To Know: Exceptional Sammie

So I recently started a Facebook group for parents of "exceptional" (read: atypical) children who are committed to finding positive parenting techniques in addressing their needs. The group is designed to be a support/information sharing one and it is already taking off like wild fire!

One of the components that I thought would be interesting was to build a "profile" on our children that really examines who they are and what they are facing as obstacles.  This way, we will be able to match ourselves to parents facing similar struggles and can help educate each other on things that may be new to us.

To kick start this, I am profiling Sammie. So here goes:

Age: 3.5 years

Describe your child in using 5 positive words: Loving. Intelligent. Adaptable. Persistent. Sensitive.

Diagnosis (if applicable)/Noticeable Differences:

Sammie has been diagnosed with a Severe Communication Disorder (expressive/receptive). We are currently investigating him for Autism Spectrum Disorder (Moderate to high functioning) and Sensory Processing Disorder (severe to moderate). There is a great deal of confusion among all his practitioners/doctors as to whether Sammie actually has Autistism or not because he doesn't display many of markers for a severe (or even a moderate) social delay, however it is very likely that he will eventually get an ASD diagnosis for lack of better options. That said, the new DSM V manual describes a new condition (Social Pragmatic Communication Disorder) which may wind up being a better fit for him. For now, we are proceeding as "ASD- Working Diagnosis". There are also reasons to believe that Sammie is "twice exceptional", a term referring to special needs children who show gifted abilities in one or more areas. (Sammie shows advanced abilities with puzzles and mechanics, has already begun to play songs by memory on the piano. We suspect he may have a very high IQ, but testing is difficult because of his communication issues).

Age when differences started to become noticeable:

Sammie was "different" from birth. He displayed an unusual amount of fascination with how things "work", and it was apparent that he was exceptionally intelligent in areas of mechanics and function. He also had unusual gross motor capacities (ie: was walking a balance beam backwards at 18mos). He never learned to speak with the exception of occasional babbling, mostly nonspecific. He also never mimicked in the way that is typical for children of his age (blowing kisses, waving, etc). We have been suspecting that Sammie may have autism since he was around 6 months old.

We have only recently started to really understand Sammie's sensory issues, but looking back we can definitely identify that these were also apparent from birth.

Since he has started school, Sammie's social skills and receptive communicatiom skills have exploded, amd he is also making great gains in expressive communication.  He has learned to sing (wordlessly) several songs and shows signs of an eidetic memory.

How do these differences affect his/her every day life?

Being minimally-verbal has actually presented Sammie with relatively few challenges because he is extremely strong with non-verbal communication. However, his difficulty with receptive language makes learning "every day" concepts much more difficult for him. He is still not toilet ready and struggles with some fine motor activities like using utensils.

He is an extremely adaptable kiddo who is very good at identifying when he is overwhelmed, and seperating himself from the situation. However, this has led to difficulties in forming social relationships because he is often overwhelmed by the presence of his peers.

Sammie struggles with bright lights, so our house is usually kept quite dim. He also struggles with loud sounds, which wasn't a problem until his sister was born.

Sleep is an ongoing adventure for Sammie. It is the proverbial "root of all evil" and is always our number one focus. Food also impacts him which has led us to adopting a very strict diet for him. (Gluten, casein, dye free. We are also working on removing soy and non-naturally occurring sugars).

He attends a specialized, segregated school program which has gone amazingly well, though we did have to make a classroom change last week because of sensory issues.

Sammie very rarely has meltdowns, but when they occur, they are all consumming and can lead to extremely volatile behaviour. While Sammie is never aggressive, I have been injured in the past by the force of his body movements, including a black eye and a fractured rib. As he gets older and stronger, the risk of injury to himself and to others grows greater.

Sammie's incredible proprioreception and vestibular needs mean that he is ALWAYS on the go. We are constantly working on finding new gross motor outlets to help him regulate his body.

Strengths: Sam is extraordinary at showing us how is feeling.  He is generally very calm, cool and collected. He has an amazing memory and is very determined. He is funny, charming and an absolute joy to be around. He is loved by everyone who meets him.

Weaknesses: Communication and sensory regulation are the big ones. He is also extremely persistent and has a very strong personality, so trying new things and being open-minded is a struggle.

Tactics used to accommodate their needs:

DIET: Sammie is 100% gluten free, dye free, msg free and casein free. We are also eliminating soy and working towards a paleo/clean diet.

SENSORY DIET: The VAST majority of Sammie's challenges lie in sensory regulation issues. We have him a strict sensory diet, have built many sensory outlets for him, including a modified snoezelen room and a gross motor play space. We are working closely with an OT to continue building on these.

SPEECH: Sammie works with an SLP and is starting a modified PECS/POD system. We do a lot of pivotal response work with him as well which has proven effective.

SOCIAL:  We have enrolled Sammie into a segregated special needs program where he interacts with peers 4 or 5 times a week. We also ensure to complement this with a lot of scheduled time with his non-school friends. Sammie is also taking Karate, swims several times a week, and will be doing a music program in the winter.

The number one tactic we employ is philosophical. We believe in loving and accepting Sammie for who he is. We do not try to "change" or "cure" him, as much as we are trying to give him every opportunity we can for him to grow on his own. We believe that Sammie "speaks" in his actions and behaviors, and we strive to learn his language as best as we can.

Name 3 short term goals for your child:

Within the next 6 months, I would like to see Sammie make progress with toileting. I would also like him to try learning 3 new words, and to have him eat 3 new foods.

Name 1 long term goal for your child:

To find a way that is comfortable for him to communicate his needs/wants/thoughts with those around him, whether through speaking, writing, signing, etc.

What do you excel at in parenting your child?

I accept Sammie for who he is, and we are deeply bonded. I also am an avid reader/lifelong student, so I am usually one step ahead of his therapy team in trying new things and identifying needs. I have been told that I am a tremendous advocate for him, though I take great issue with this term and do not apply it to myself.

What do you struggle the most with?

Balancing the needs of my "exceptional" son with my spirited and equally exceptional young daughter (8mos). Attachment parenting is very demanding in the first year, and I am often overwhelmed by trying to do it all. I struggle with SMS ("super mom syndrome")

What is your biggest fear concerning your child's future?

That the world will be cruel to him because he is so different. I read every day of the horrific abuses that are done to special needs children and adults, and I am petrified because my son doesn't have the words to tell me if something bad is happening. I have nightmares about this almost nightly.

What is your biggest dream for them?

That he be happy with himself and with his life in general.  That he never underestimate his abilities and talents.

Who/what are your greatest allies/supports?

I have a remarkable network of friends and family who are amazing sources of support. Sammie's school team is also amazing. And google is my best friend. ;)

What topics are the most important for you to learn about/discuss?

Self care. Balancing the needs of various siblings. Letting go of guilt.

Are there any topics that you feel comfortable in assisting others with?

I am pretty much a walking encyclopedia on current research for ASD and SPD. I am constantly reading/researching, so I may be able to help people who are very new to all of this, especially when it comes to identifying your child's sensory needs and brainstorming creative ways to have these needs met. I also have an intimate knowledge of the workings of government, including FSCD and Alberta Ed. If you have questions about the "system" and how it works, I'm your gal ;)

The most beautiful song I've ever heard.

Sammie has learned to sing. Wordless, maybe, but intentional, rhythmic, tonal (most of the time) and full of gusto.

Twinkle Twinkle has never sounded so beautiful.

(This is far from representative of how he actually can sing the song- he didn't want me filming him, so I had to catch him while he wasn't paying attention and playing on his ipad. ;) But you get the point...

www.youtube.com/watch?v=Sz071pb-NkA&feature=youtube_gdata_player

My Village

My dearest children,

They say that it takes a village to raise a child. That, in order to meet every human being's unique and diverse needs, they need to be surrounded by pillars of strength that will raise them up to their fullest potential.

There are very few things in life that I can claim to know with absolute certainty, but I know this to be true.

You are both too young to comprehend selflessness; too young to know of sacrifice and of gratitude. So, on your behalf, I will allow my cup of thankfulness to overflow and I rest my heart each night cognizant of thr incredibly blessed existence that you both live.

I shed tears of appreciation for our village, and tonight is my Thanksgiving.

Let me introduce you to your neighbours, dear ones. Not the ones who share our fences, but the ones who share in and help to write your story.

Let me tell you of the people I am honoured to call my friends.

Let me tell you of the teachers- some by trade, and others by passion. They are the ones I turn to when I lack the knowledge for how to best guide you. They fill my mind with resources and tools to help nurture and grow you in every way. They are my living encyclopedias of information, my sounding boards, my tireless wells of opportunity and growth. They have guided me through, from the very first time I dreamt of your faces, to your birth, and every stage of life that has followed since. They are my mentors.

Let me tell of you of the healers, some by trade, and others by passion. They are the ones who teach me of the wonder of the human body. They cherish my ability to grow and sustain life, amd carry this force through the years as I continue to nurture your spirits. They mend my wounds, on my body and on my soul, caring and treating every scar back to life. They have seen me broken. They have made me whole again.

Let me tell you of the counsellors, some by trade and others by passion. They are the ones to whom I intrust my deepest fears and my grandest hopes. They wipe the tears from my cheeks, and share laughter and joy with me in moments of triumph. They open their hearts when my own needs a safe place to rest. They give without condition, relentlessly committed to our happiness.

Let me tell you about your family, the greater community that we engage with. They are the ones whose lives and experiences bring meaning to our own. Let me tell you how each of them is a constant reminder that we are not alone, that together we are building a world much larger than what we see here today.

Let me tell you about the jokers.
About the entertainers.
About the athletes.
About the politicians.
About the musicians.
About the brothers, and the sisters, and the fathers and the mothers...

Let me tell you about them all.

These people, these pillars in our lives.

Let me tell you how, because of them, you are never really alone.

We are one community.
One tribe.
One village.

Let me tell you of them, and when I do, let me teach you to be like them. For there is no expression of gratitude or flattery finer than to emulate the good works you have been shown and to share more love in the world.

Let me teach you to be mirrors, reflecting always the kindess, love, compassion and support that you receive.

Let me tell you of the wonderful village of friendship that we call home. And let me teach you to take from it, and when you are older, build onto it. Help it to spread. Help it to grow.

Because it takes a village to raise a child.

And it takes a village to lead a full and rich life.

I am so very grateful for mine.

Sammie broke my brain today...

Okay, so a few weeks ago I wrote this post about how I knew that Sammie was sick because, out of nowhere, he started randomly lining things up in the house. This was a highly unusual behaviour for him, and sure enough my gut was right and he wound up with an insanely bad cold. 

This confirmed for me what I have always suspected: Sammie behaviours are completely relative to how he is feeling. I can predict, at least with some certainty, how he is feeling based on the severity of certain behaviours, in particular his rigidity and obsessiveness with "things". 

You see, Sammie does like lines. But only when they are composed of trains. 

Trains should always be lined up. 

This is a truth about him that has been more than well established over the years. 

Rarely does Sam ever let a set of trains pass by without lining them up. 

If there are pictures of trains in different books, he will open these books up, line them side by side, and look at me proudly as if to say "Look mom! Trains line up!" 

Even his big Thomas The Tank Engine tent always needs to lined up perfect with Annie the train car.  

They just 'go' together.  

In fact, he has been ritually lining up trains since he first grasped the fine motor coordination allowing him to do so. Sometimes the trains go places. Sometimes, stuffies or other toys "ride" the trains. But always the trains line up. Usually in one big line, though sometimes side by side. But no matter what, the trains line up- engines at the front, cars at the back. After all, that is what trains do. 

He has been doing this for well over two years, with only occasional slips here and there that were always quickly corrected when he noticed a train 'out of place'. 

Trains line up. That's what they do.

This is just how his brain works. 

Or at least, it was...until today.

This morning, I went downstairs and found this:

And this:

Now, these may just seem like pictures of a messy playroom to you (please don't judge me), but to me they are absolute and concrete deviations of stereotyped behaviours that Sammie has clung to since he was just barely a toddler. 

The trains aren't lined up. 

In fact, they are scattered all over the floor, with half turned over on their side. 

I didn't know what to think when I first found them. My instinct was to put them all back where they belonged. I have never felt so completely confused, confounded by my son's behaviour. 

But I resisted the urge. 

"He will fix them when he is ready."

But after a full day of playing downstairs, off and on for several hours, the trains are still in a pile. 

Untouched. Unorganised. Unphased. 

What does this mean? Is it a result of removing casein? Is it a sign of a lessening of these patterns of rigidity that I have come to expect and predict? Is this a coincidence or the new "normal"?

If you are a parent with neurotypical kids, you are probably thinking to yourself: "Lady, get a grip. Kids do weird things sometimes. It's not a biggie. You're reading too much into this. Enough already."

But if, like me, you are the parent of a child with autism, you will understand just how significant a shift in behaviour this is. And you will understand why my mind is racing, trying to put back together the pieces of what I thought I knew. 

Trains line up. 

That's what they do. 

Except today. 

Today, they lie in a pile on the floor. And my son is happily slumbering in his room, aware of this fact. 

Untouched. Unorganized. Unphased. 

A Halloween Wish: Project Sammie's Super Spooky Halloween Train

So Sammie is now gluten free AND casein free. We'll see how long it lasts and whether or not there are lasting effects, but so far we have definitely seen some changes in his vocalizations. In fact, my little guy can now sing (without words, but still...) "Twinkle Twinkle Little Star" and has also started rediscovering "Mom" and "Momma", along with other sounds that he had when he was a young baby ('evil laugh', raspberry blowing, etc.)

Going GFCF really isn't all that challenging once you are used to it.  Granted, it definitely eliminates the "spontaneity" options like eating out and grabbing fast-food.  And it costs a holy fortune. But, overall, the transition is going well. Heck, Sammie even tried BBQ ribs last night...it kind of broke my brain.

The biggest inconvenience of GFCF is limiting snack options in public settings. Take Halloween for example. Trick or Treating is now something to be very seriously considered, weighted, researched and- tragically- discarded.  There is no way I can risk just handing my ASD kiddo a whack load of candy, most of which I may not be able to properly check for ingredients, without seriously considering the consequences.  Given that the diet is so new and that Sammie is thriving so much, I can not justify exposing him to possible allergens and throwing his health back in jeopardy.

So, Halloween is out.

Or is it?

"If Mohammed can't go to the Mountain, the Mountain will go to Mohammed."

Halloween is simply too much fun and too much a part of social learning for me to cut it all together.

So today I sat down and wrote a letter to my neighbours.

I asked them to join me on a project that I know would rock Sammie's socks right off his feet.

I hope they will join me. 

I hope they won't judge me. 

I hope I get to have a Halloween with my son worth remembering forever. 

Is there a Halloween Fairy-Godmother? Cause I sure could use three wishes right about now.

Dear Neighbours,

Hello! Our names are Zita and Jason and we are the parents of 3.5 year old Samuel (Sammie) and seven month old Charlize (Charlie). We live at 17916 62C, just a few steps away from you!

As Halloween approaches, we are busy getting ready to celebrate this fun-filled time of year with our children. As exciting as this is, our family must take extra precautions this year to make sure that Sammie has a wonderful time.

Sammie is a bright, happy, affectionate and fun-loving little guy who happens to have Autism. This means that he doesn’t use words to speak, has some difficulty following social cues and interacting with others, and has to follow a very strict diet that includes no milk, whey, casein or wheat/grain products.

This limits his options for Halloween candy immensely, which is ok because he doesn’t have much of a sweet tooth. So instead, we have decided to do something a little different for him, to give him a chance to really enjoy Halloween like other kids.  Since Charlie is so young, we are in a position to really make this year’s event “all about Sammie”.

But we need your help to pull it off!

Sammie really loves trains! He can build model train tracks that are designed for adults, and can recognize and identify different steam trains from across the ages! We thought it might be fun for him, instead of trick of treating for candy, to build his very own “Halloween Train” instead.

Here’s what we are hoping to do:

• Jason and Zita will purchase and decorate several different train cars in a Halloween theme.

• On October 30th, Zita will drop a train car and a picture of Sammie in his costume (so you will recognize him at the door) into the mailbox of every house that is willing to participate in our project. (Please note: We know and respect that many of you may not celebrate Halloween, or would prefer not to participate for personal reasons. We truly will understand if you decide this activity is not for you.)  

• On the 31^st, Sammie will go around to only those houses and “trick or treat” for his train cars. He will be trick or treating between the hours of 6pm and 730pm. When he comes to your door, instead of giving him candy, you would give him the train car that we dropped off the day before.  

• Once he returns home, he will find a fabulous “Graveyard” themed train track to play with to his heart’s content. 

If you think this project sounds like fun, and you would like to help us make this the very best Halloween ever for our little guy, please let us know by doing one of the following:

1. Fill out the RSVP card and return it to us in the pre-stamped, pre-addressed envelope we have provided for you. 

2. Email your RSVP to us at zita.dubelockhart@gmail.com. Please include the following information: Name (if you would like to disclose it) address, and best time to visit you on October 31^st (between 6pm and 730pm)

3. Call us with your RSVP at 780-757-1024. If we are not home, please leave a voicemail message with your RSVP information: Name (if you would like to disclose it), address, and best time to visit you on October 31^st (between 6pm and 730pm)

In order to get everything purchased and decorated in time, we humbly request that all RSVPs for this project be received by October 20^th.

If you choose NOT to participate, you can either RSVP with you address and  “NOT PARTICIPATING” using any of the previous methods, or simply not respond at all.  

Out of respect for all our neighbours, we will only be visiting the homes that have chosen to participate.

We sincerely thank you for your time in reading this letter and hope that you will join us in making this a special experience for our very special boy and our entire family.

If you have any questions, please do not hesitate to call us at 780-757-1024. We wish you and yours a wonderful Thanksgiving, and hopefully we will see you on Halloween night.

Best regards,

Jason, Zita, Sammie and Charlize