Tuesday, October 14, 2008

My Son's (Un) Just Beginnings

I’ve written about the day of my daughter’s diagnosis, so I thought it was only fitting to continue with the day of my son’s diagnosis, if you can bear it, because it was a bit different. It was just 6 months after my daughter’s autism diagnosis and one year after a speech therapist diagnosed him with PDD (Pervasive Developmental Delay) and the recommendation was: get him into a preschool program to develop his speech. Which we did by the age of 3; he was kicked out by 3.5. Oh, Boy!!!

Just shortly before his 4th birthday we had him evaluated at Children’s Hospital by a different group of doctors than we had for Meghan: pediatric pediatricians and psychologists. His diagnosis was grim, as far as I was concerned: MR (Mental Retardation).

As one can imagine, this diagnosis did not sit well with us, especially me. It was not the fact that he was diagnosed with a disorder, but PDD was what I was thinking. A much milder form of autism, but one that I could put my finger around and have it actually make sense for him. I think MR is just a label with no sense of recovery. Meaning that autism has therapies and hope, but, to me, MR sounded cold, hopeless, and hollow, like there’s nothing you can do—just love your boy, was really how we were treated. I just couldn’t understand what this diagnosis really meant, so I asked:

Me: “Does this mean that he can’t learn?”
Them: “No, of course he can learn.”
Me: “What do people with this diagnosis do for work?”
Them: “Well, a lot of ‘them’ work in wonderful places, like even here at the hospital.”
Me: “Like what, take out the trash?” (I was being sarcastic)
Them: “Yes, exactly, they mop the floor and take out the trash.” (she said, enthusiastically!)
Me: I felt physically sick “Can he learn math? Science? Reading?”
Them: “Yes.”
Me: “Algebra?”
Them: “Yes, of course.” (nervous laugh)
Me: “Then why??”

As if they had slapped me in the face and continued to punch me with every nervous word that was shaped and delivered while we sat gasping for air.

And given a box of Kleenex … but no hope.

I wasn’t giving them a hard time, I was just trying to figure it all out and, Yes, I was defensive. How can anyone label my son with no hope and a future no better than a trash man? (There’s nothing wrong with that profession, mind you, but I wanted my 4 years old to receive the benefit of the doubt and be presented with the same options that every other preschooler was given.) It was as if he was tried and convicted of a dismal future and he was only 4 years old. I wanted people to have higher expectations for him because we believed in him and this “label” just didn’t present us with any options, just a dead end and the color of gray.

Autism seemed to have hope at least, and proactive solutions: There were books and an entire therapy revolved around it (ABA), not to mention speech and language therapy; it was a process of learning and of recovery. It offered Hope.

I never went back to that hospital (as if it were their fault), and during the days following this diagnosis I told his special needs preschool teachers, speech therapist, pediatrician, friends and family what his diagnosis revealed. What I got was a pause and a “NO.” Not just a No, but a Nooo! “No, he’s not,” said every single one of them. Interesting. Our pediatrician even added, “No, he’s too smart, and I see it in the way he plays, it’s PDD, you’ll see, he’ll start to develop better language and even out,” he said.

Over the next 10 years and a few different pediatricians, lots of teachers, and one psychologist later, have all labeled Nick with a mild form of autism and we stuck with it. It makes sense for him based on what we’ve seen and how he tests; and the therapies work for him, like speech, OT, and social skills classes and have helped him develop, progress and see color, not gray.


Tanya @ Teenautism said...

How insensitive those people were. I'm glad you followed your instinct about your son. We all need to remember to do that! Take care.

Casdok said...

They dont have a clue do they what they do to us with their words.

Holly Nappi Collins said...

I know...and not to pick on all doctors, but a better "bed side manner" would help... or perhaps they are just so used to diagnosing kids all day, that they became too used to giving tough news.