Blog Post: Moving beyond labels.

So one of the topics that comes up often with friends and family when it comes to Sammie's growth and development is what his "condition" is called.  Terms like Autism Spectrum Disorder, Sensory Processing Disorder, ADHD and the likes are all big media recently with superstars like Jenny McCarthy going public about their children's conditions and treatments.

Naturally, labels are things that make Jason and I pretty nervous. As parents, we are totally committed to figuring out what the best ways to support Sammie's development are, but we are much more focused on finding answers and solving problems than we are on figuring out exactly what "label" best fits his behaviour.

Thankfully, in discussing this issue with our Early Intervention Counsellor, we're learning that our instinct is bang on.  Many people spend too much time trying to figure out what box to place their child into.  In fact, sometimes they forget that the important part isn't identifying the right "box" but instead helping their kid find the best ways out of it.  Our EIC informed us that many kids who go through the Early Intervention Program never get a medical label.  These kids are either too complex to properly sort into one specific condition or simply too high functioning to require the type of intervention that would require a "diagnosis".

Trying to explain this to our loved ones can be challenging, as it can be difficult to not sound defensive or like we're in denial of Sam's unique needs. Many people feel that, without a label, we are walking blindly in the dark and just guessing at what Sammie's needs truly are.

This could not be further from the truth!

The problem is that we are so familiar with the medical system's treatments of our illnesses that we assume that the mind and the psyche work in the same way.  If you are sick, you get a test to confirm what illness you have and then you treat the illness. It's relatively straightforward and seldom requires a whole lot of "guess work".

The mind is an infinitely more complex organ than the all the body parts put together.  We are still very much in the baby stages of learning about neurological and development disorders.  Most of mental conditions have been identified in less than the past 50 years!

There is no simple brain-test to see if you are a, b, c, or d.  They are identified in accordance to their symptoms.  And these symptoms overlap so much and are so varied according to the individual that special categories are often needed to "catch" those that simply don't fit into any strict moulds. (In the case of Autism Spectrum Disorder, this is referred to as PDD-NOS or Pervasive Development Disorder, Not Otherwise Specified.)

The fact of the matter is that it can take years, and often a fleet of specialists, to gather the kind of information needed to make conclusive decisions regarding some diagnoses. And we certainly don't want to delay treatment in the meanwhile.

So we do the only thing we can do. We treat the symptoms, and observe to see what works and what doesn't.  Based on this, we gain clues and insight into each child's mind and from there begin to get a fuller picture of what is going on.

So, in Sammie's case, we have a few steps to take.

We've determined that Sammie has a severe delay in expressive communication. (Ie: the ability to express his thoughts through words or gestures.) This is the first priority area as it is unquestionably the most severe of his delays.

We've also noted that he appears to have some delays in his receptive communication skills. We are not able to determine the extent of these delays yet, and are still gathering information on them.  As such, we are tracking how often he responds to our instructions, follows rules, responds (physically or otherwise) to his name or to being called, etc.  By observing this, we will be better able to assess if his delay is mild, moderate or severe.

Finally, we're looking at Sammie's social and emotional development.  Sammie seems to display some interesting differences when it comes to how and when he engages with people.  Most of these seem to correlate with his expressive/receptive communication delays. However, a few other things stand out including his selective use of eye contact and physical contact and his reactions to those around him.  However, Sammie's social and emotional development delays appear to be mild at worst, and possible more a result of other challenges and of his very strong, very unique personality.  We will continue to monitor his growth; of all the areas of development this is the one in which he most frequently achieves milestones on a daily basis.

Whether this all adds up to a specific condition or not is, quite frankly, irrelevant at this time.  Identifying his "diagnosis" is not the primary or even the secondary goal of his intervention program. What we are trying to do is to figure out how to best reach Sammie, in ways that he understands so that he can subsequently learn to overcome the obstacles that he is facing.  This, and only this, should be the focus of our attention.

So please know that when we say "we're not interested in labels", it isn't because we are afraid of what labels Sammie might get. It is because we know, through repeated conversations with specialists, that we are far from the stage where that conversation needs to happen. At this point, we are taking baby steps and seeing leaps and bounds of progress.

And that's exactly what we want to see.

Reflection: MILESTONES!

Sometimes, Sammie hits me over the head with how crazy intelligent he is. Every so often, when he seems to sense that I need a reminder, he does something so mind-blowingly awesome as to make me explode with pride and also take a huge step back and remember that, in spite of his delays, he is remarkably adaptable and quick to learn!

Today, Sammie seemed to sense that I needed the extra confirmation from him. So he triple whammied me with milestones.

First Milestone: Non-Verbal Conversation: We often engage in block play. Now, usually Sammie insists on placing the blocks himself and will only accept "help" in the form of passing him different shapes or fixing ones that fall down.  Today, however, he engaged in his first serious session of "Turn Taking". I would say "Sam's Turn" and he would place a block. Then, he would patiently wait while I said "Mom's turn" and placed a block of my own. This may not sound like a lot to most people, but what it means is that Sammie was engaging in a non-verbal conversation with me. In fact, at one point he started to walk away. When I said "Sam's Turn!", he returned and placed a block.  This back and forth dialogue went on for at least 15 minutes- an incredible amount of time in toddler minutes. Following block play, Sammie and I took turns taking pictures of ourselves in my phone. He recognized his face and my face and delighted in the exchange.

Second Milestone: Showing His Independence:  For the last little while, Sammie has shown an interest in wearing my shoes around the house. So I wasn't surprised to hear him clopping loudly around my kitchen while I was making dinner. However, when I turned around, I was shocked to find that Sammie was wearing his very own snow boots! He's only worn them a handful of times, and has never even attempted to put them on himself. In fact, he's only ever shown mild interest in putting shoes on in the first place and typically is pretty complacent about allowing them to be put on his feet.  This was the first time Sammie showed me that he was able to choose his own footwear and put them on by himself. This was a huge sign of independence and of self-awareness.

Third Milestone: Trying "New" Things:  It is very common for children with developmental challenges to experience difficulty in trying new things.  When it comes to verbal/oral delays, they are even more prone to food aversions than most kids. As such, Sammie has a pretty restricted diet and refuses to eat anything beyond his chosen list.  As part of my homework, I've been trying to introduce "new" foods to Sammie- and by that I mean foods that he used to eat, but has since given up on. This seemed to be a good starting point before introducing entirely new tastes and textures. One area of concern has been Sammie's protein intake since he categorically refuses to eat any meat (with the exception of McDonald's hamburgers...if you can call that meat)  Today, Sammie refused turkey slices, a grilled cheese sandwich and multigrain bread.  I decided to test him one more time using his very favourite meal: Kraft Mac and Cheese.   To this I added a full tablespoon of crumbled tuna- enough to affect the taste but not so much as to change the texture dramatically or be hugely noticeable upon first sight.  Sammie took the first bite happily but displayed surprised when got it in his mouth...usually this means that there will be no second bite. Imagine my amazement, when he began to shove huge (baby) forkfuls into his mouth. He didn't only eat it- he devoured it! And then he gave me a grin that showed me very clearly that he knew what I had done...and he was OKAY with it! And thank goodness...because you know what they say: Sam can not live on bread (and peanut butter) alone ;)

So there you have it! One of my very best parenting days ever! I don't know what it was- maybe it was the extra one on one time we spent today. Maybe it was the three days of solo parenting that forced me to take part in activities that are usually more dad-specific. Maybe it was just that Sammie himself was having a great day and was ready to do some milestone mastering. Either way, it's been awesome! And I'm so excited that we have so much to update Daddy on when he gets home!