Monday, November 12, 2012

D-Day

This morning, a very lovely (and young) psychologist came to our home.  She was really pleasant and lived up to our phone conversation.  She spoke with Peter and I, was very attentive, and truly tried to get a good picture of Bobby.  She spent time trying to get to know him one-on-one and then watched him as he played during playgroup. 

She was very pleasant and I am very glad that she opted to come to our home because there is no doubt in my mind that she got the full Bobby experience for all the good and bad, and that she saw was a lovely, fun little guy we have on our hands.

A lovely, fun, wonderful little guy who now has a black and white diagnosis of PDD-NOS.

In case you are unfamiliar with PDD-NOS, Yale does a great job of explaining it:
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.

I can't say that I am suprised.  The PDD-NOS diagnosis is the one I felt closest fit him when I was researching.  It's been clear to us for a while that he needs help and is struggling.  He is clearly delayed and needs extra help.  We are so very lucky that we have a supportive network of people who know and love him, and want to help him.  I couldn't help but think how lucky are we! when I read the response of his preschool teacher to diagnosis: "This changes nothing. Bobby's still Bobby, it's not like now he know's he's been diagnosed and he'll start acting differently...or at least I hope he doesn't because I've really grown to love that little guy!"

The diagnosis and label dont change Bobby.  PDD-NOS is just a part of who he is. It's a way for us to help him get what he needs.  It's a way to explain some of his challenges without offering excuses for his behavior.  He's smart and he wants to succeed; as long as we believe in him, I know that he will believe in himself.  If we give him the tools to succeed, he will succeed and, one day, he'll find and get those tools on his own.  I have no doubt about that.

The road ahead will be hard for him; it breaks my heart to know that there will be struggles and there will be battles I wont be able to fight for him (or even help him fight).  But he's still perfect in my eyes and he always will be.  Whatever comes, we will take it and we will do so together.  This isn't the worst that could happen; it would be far worse to imagine a world without him.

They were born on 09/10/09; today is 11/12/12.  Seems like the world likes to not have a linear 9/10/11 or 11/12/13 for us for these big deals. :)

5 comments:

quadmom said...

*hugs*

Amy said...

Michelle,

I left a comment for you a while back when you were first going down this road. My youngest carries a diagnosis of PDD-NOS and much of what you describe for Bobby is similar to my experience with my son. You're right; it doesn't change who they are, but it does help you get everything they need to grow and thrive.

I asked once, when my little guy was in preschool and we had just gotten the diagnosis, "Will he ever catch up?" And they told me, "He is disordered, not delayed. His brain works differently. You can't think in terms of 'catching up'. You just have to work to help him be the best he can be."

Today my son is ten, in a mainstream classroom, and doing very, very well. He still is who he is; hates crowds, strangers, certain foods, loud noises, being tired, clothes with buttons. But he is also smart, capable and self aware. He knows his limits and we work with him to expand them every day, all the while avoiding the triggers that take him to the edge of those limits.

It's a journey. Take each day, each opportunity you have for intervention, as it comes. It won't be easy. But you are certainly not alone.

Barbara said...

Bless his little heart. You know what? I have absolutely no doubt that Bobby will be the best that he can be with such loving and supportive parents.

xxx

Tammy said...

Thinking of you. Let me know if u need anything.

Fran said...

He will greatly benefit from the help he's getting, you are helping him fighting the battle already! Much love to you