Doubt or Denial?

Have I mentioned that there are times that I really doubt Jesse's diagnosis. I mean, REALLY doubt it. Today at the active play time at the local gym, Jesse approached a mama and her sleeping baby. He gently patted the baby's head, gave her a kiss, and lightly nuzzled her. Then he pointed out the baby's ears and eyes and nose to me. He was captivated by this little baby girl. Totally made my heart melt. And he's been so insistent on us playing with him too. He says "Mom" or "Da," points to a chair at his little table (indicating he wants us to sit on the teeny tiny chair that we're both afraid we'll crush) and the goes on to pretend to serve dinner and to eat and drink.

And then I compare Jesse to age-matched peers and I come crashing back down to earth. They're talking in sentences. They're singing. They're engaging other children their age in play.

So I guess my doubt is really just denial?

Sinking in

Is it sinking in yet? Maybe. Or maybe I'm just too numb to deny it. I think this whole thing is complicated by the fact that Jesse seems so happy and normal. I mean, to anyone who is unaware of Jesse's diagnosis, Jesse is just a normal little boy. Sure, they'd probably pick up on the language issue, but other than that....clueless. I mean, that was ME prior to yesterday. And now I'm noticing things. Things that should have made this less of a shock. The toe walking is happening a lot more than I noticed. The echolalia.

And then there's the fact that this diagnosis explains almost everything we've been through with Jesse since he was 6 months old. The food intolerances (not explained by allergies) and gastrointestinal issues, the sleep issues, the heel cord contracture (which the physiotherapist felt was related to a sensory issue), and the speech problems (delay and regression). Why did I not put this all together before?

I guess it's all moot anyways. The past doesn't exactly matter very much now. We have to figure out where to go from here. I guess we'll be getting a call from the social worker soon. And I placed a $150 Amazon.ca order today for around 10 different books on autism. Maybe by the time they get here I'll be prepared to start reading them.

Day One

There are certain days and events that will be forever burned in your memory. The sights, the sounds, the smells.... Even though I've been around for going on thirty years, I don't have many of these days. Getting my high school diploma, walking down the aisle, getting my first positive pregnancy test, suffering a miscarriage, and the birth of my son Jesse comprise my list.

And then today happened. My beautiful, perfect little boy was diagnosed with Pervasive Developmental Disorder - Not Otherwise Specified.

What does it mean? I'm not entirely sure. I do know that PDD-NOS is an autism spectrum disorder and that it scares the shit out of me. I've been avoiding google, because I'm not quite ready to dive into this just yet. I'm still adjusting to the shock of it all.

Jesse is the most wonderful little boy. He's incredibly loving - very generous with kisses and hugs. He flirts with pretty girls and ladies. He's very gentle around other children and adores older kids. He's incredibly smart (I know all parents say that about their kids, but other people have noticed this too). So how did Jesse end up with a diagnosis of PDD-NOS? I'll give you the long version later, but the short version, is that speech issues led us to an appointment with the developmental team neurologist, Dr. Crosby, who assured us that Jesse was almost certain a perfectly healthy normal little boy. But she suggested a team assessment just to completely rule out anything else. So we went to Jesse's appointment with the developmental team today fully expecting them to say to us, "What are you doing here? Your kid is fine." That didn't happen. After going over the assessment with the other team members (occupational therapist, speech language pathologist, psychologist?) Dr. Crosby met with us. In under two minutes my head was swirling with information that I was just failing to comprehend. "Autism spectrum", "Pervasive Developmental Disorder," "Social worker", "lead therapist", "therapy program".........

In a matter of minutes, our whole world turned upside down. Nothing has really changed. I mean, Jesse is the same child he was yesterday. Still the same happy, loving, wonderful child he was yesterday. Right now I have to remind myself of that constantly. But everything else has changed. Yesterday I was planning on starting a new business venture that would, hopefully, in the future, allow me to reduce my hours away from home. We've been planning to grow our family. Both of those are on hold indefinitely now. I have so much to do and learn. I have to help Jesse get better. I don't want my little boy to have to deal with a world that views him as "damaged." I just feel so ill-equipped to do this.