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.
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