Putting the Puzzle Together

cadepicassoI love the symbol of a puzzle for autism.  Not that I think my son has pieces missing, it’s just that I don’t yet have the full picture and things are being revealed to me the more my son and I learn.  Then I take the knowledge and work with him so we can see through behaviors as to who my son is as a person. I’m feeling like the puzzle of my son is going from a Picasso to a portrait I can understand.  Both beautiful works of art, but one is more tangible for me.

Diagnosis of pdd-nos, this is what the Yale School of Medicine has to say:

“Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) is a ‘subthreshold’ condition in which some – but not all – features of autism or another explicitly identified Pervasive Developmental Disorder are identified. PDD-NOS is often incorrectly referred to as simply “PDD.” The term PDD refers to the class of conditions to which autism belongs. PDD is NOT itself a diagnosis, while PDD-NOS IS a diagnosis. The term Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS; also referred to as “atypical personality development,” “atypical PDD,” or “atypical autism”) is included in DSM-IV to encompass cases where there is marked impairment of social interaction, communication, and/or stereotyped behavior patterns or interest, but when full features for autism or another explicitly defined PDD are not met.
It should be emphasized that this ”subthreshold” category is thus defined implicitly, that is, no specific guidelines for diagnosis are provided. While deficits in peer relations and unusual sensitivities are typically noted, social skills are less impaired than in classical autism. The lack of definition(s) for this relatively heterogeneous group of children presents problems for research on this condition. The limited available evidence suggest that children with PDD-NOS probably come to professional attention rather later than is the case with autistic children, and that intellectual deficits are less common.”

When Cade was diagnosed I found it extremely confusing and difficult trying to navigate the spectrum.  Knowledge is power and I was powerless.  PDD-NOS as one can see, being a catchall diagnosis is an enigma in itself.  But in our case, they also said autism.  I was seeking answers in medical guidelines that were a huge umbrella encompassing so many things that it didn’t give any peace of mind or direction for my son.  So I pressed for further evaluations.  I had already had speech, so I requested occupational and genetic (still waiting on the results from the genetics testing, UNC is not an easy place to get into).

Occupational therapy has been a real eye-opener.  I finally have some answers.  I know some of his autistic behaviors and why he does them.  Things like stimming, smearing, being afraid of stickers, jumping all the time, having a high tolerance for pain, and more.  Finally I had tangible goals with practical solutions. I dove in.  He was diagnosed with sensory processing disorder for tactile, vestibular and proprioceptive.  Big words, essentially tactile is  sense of touch.  Vestibular is inner ear;for my son mostly auditory sequencing, but it can relate to sense of balance and spatial awareness as well.  Proprioceptive is how the body relates to itself, and the occupational therapist also said he has low muscle tone.

I also had a fantastic case manager when my son was in the CDSA (North Carolina’s program for exceptional children under 3) who was a nurse.  She was great about answering my questions and providing practical advice and explaining the medical side of it.  She was simply amazing, and I wish I could keep her on speed dial now that I’m on my own coordinating his care and therapy.

I’m diving in by taking three college courses this semester, Exceptional Children, the Psychology of Learning and Development and Developmental Psychology.  It helps to satisfy my need to become expert in whatever I am encountering in my life, and in the case of my son, there is no greater priority.  It’s nice to have the scientific nature of issues and know sort of what is going on with his brain.  But I also find that my real-life connections have been even more helpful in understanding this puzzle. People like Rachael, from Asperger Journeys, have made autism tangible rather than abstract for me to understand.  My son’s speech therapist is another peach, in explaining things tangibly for me with regards to therapeutic listening and auditory sequencing memory disorder. 

cadepuzzleI’m no where near understanding all the pieces I have to work with, but as we fill the corners; more pieces will fall into place.  We will continue working on known issues like speech and sensory, and hopefully like happened with speech, once we got him to break out a bit and talk we could see where the piece for auditory sequencing went.  Had we never encouraged him to talk, we never would have known that he transposes words and phrases.  One day at a time, one more piece at a time, before long I will better understand my son, and that is a journey I am fully on board for!

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2 Responses to “Putting the Puzzle Together”

  1. Rachel Says:

    Re: the courses you’re taking, you said, “It helps to satisfy my need to become expert in whatever I am encountering in my life…” This sounds so much like me! I wonder whether you have a bit of Aspieness in you.

    In any case, it sounds like you’re enjoying the process of understanding your exceptional son. Putting the pieces together is a very satisfying experience–something I’ve experienced over this past year with understanding all the mysterious otherness I’ve felt throughout my life. It’s a wonderful feeling to keep finding those pieces and seeing the whole picture come into focus. Despite the difficulties, I wouldn’t trade it in for anything. It sounds like you wouldn’t either.

    Keep going, mom! You’re doing great. And my email box is always open to you.

  2. Melissa Says:

    Actually, I think we’re all a little autistic, to be honest.

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