Between the Lines

This was what diagnosis was like for us: Imagine being underwater and having someone shouting at you from above the waterline. Everything is muffled, slow and pressing in from all sides, and your lungs and head feel like they will explode.

Getting back in the car after the appointment is the worst--that heavy sense of dread and fatigue, each of you trying to look brave for the other. Both of the developmental pediatricians we saw were in Marin County, so Jesse and I started a little ritual on the way back...a stop at In-N-Out Burger after each appointment, a grim treat. Somehow it was always raining.

Pretty much everyone was helpful, intended to be helpful, or, in some less fortunate circumstances, was simply paid to appear helpful. We were lucky enough to connect with some of the finest resources in the Bay Area, most of whom are shockingly busy. Eventually we made our way through diagnoses, paperwork and all the usual mind-numbing processes required to identify, document and provide services for the special needs child.

The parent of a kid with special needs will quickly become intimately familiar with the official resources available to you. In most cases, no matter how good these resources are, they won't be enough. What Jesse and I really needed from day one was something to help us get from point "A" (the rainy parking lot of the developmental pediatrician's office) to point "B" (a plan for our kid). Right now, there are few places in this country that do this well, or at all, so we're left having to piece it together ourselves.

But, during the course of the last two years, we found the most insight, reassurance and hope "between the lines": a playground conversation with a Dad of an older child with similar challenges, a late night email from one of Isaac's therapists, a new phrase learned and repeated with delight (Isaac is fond of saying "Rock ON!" lately), a suggestion from a therapist that you know can't possibly work, but somehow does.

So, I am planning to write about the things that work for us, that bring us insight and comfort, and I'm asking the people who have been most helpful to Isaac and us to share their experiences here. My goal is to create two things: a unique, personal resource that talks about the experience of raising/working with a special needs kid; and a network that replicates in virtual space what we have developed over time in the real world.

I want this to be a place where people feel relaxed about coming by, kicking off their shoes, having a cup of tea or a glass of wine and much-needed conversation. Talk to you soon.

Comments

[Vicki Forman]

Hi,
I came here from your friend Jordan in Chicago. Thanks for becoming part of the discussion, and good luck. We all need help navigating these waters.

[Rachel Norton]

Your post about diagnosis made me think of a tableau I saw the other day - arriving at the CPMC child development center I saw a couple with a young child come out of the elevator and the (presumably) mom just burst into tears as soon as she was out the door. It was very much like what I did in those first few minutes after I "heard the news." We smiled bravely at the doctor, asked a lot of questions, walked out of the clinic, went downstairs and then I got outside. That was when it was safe to burst into tears. That was when it became real.