Monday, February 5, 2018


Last weekend I was invited to a gathering that included a few other families with kids with special needs, most of whom I had not met before. I was chatting with a Dad who has two kids on the spectrum.  As we talked about our kids,  I mentioned that in addition to being on the spectrum,  Simon had also been very ill with heart disease as a small child. His compassionate “oh man, that sounds so hard” response to that extra bit of news was welcome and also jarring.  It always catches me off guard when another parent with a kid with special needs is shocked by our medical experiences. I forget sometimes that there are multiple clubs under the “Special Needs” umbrella.  I figure that we belong to *three* clubs.

I’m a public health nerd, so I made a Venn diagram with examples of what I mean.
(Simon doesn't have all the things listed under each category, btw, in case that's confusing- just giving examples of what might be in each bucket) 

As I lay in bed thinking about my conversation with that Dad, I realized that Simon's life so far is divided almost equally in half, with the  first half dominated by medical special needs and the second half by developmental special needs.  As a bonus, in the last year we've also been joined by behavioral special needs but I sort of lump that in with the developmental stuff. 

Our lives have been somewhat ruled by whatever issue is on the front burner.  In the first 5 years of Simon's life, we only wanted to go to cardiac camps, freaked out about germs on the daily and mostly lived with the threat of death.  At about age 5, Simon got off the feeding tube, his heart stabilized and we got the autism diagnosis.  From that point on, heart camps didn't work for us anymore, we shifted our focus from keeping him alive to how to best understand how his brain works, worry now about crowded/overstimulating situations and live with the threat of him getting bullied.  Last year he got diagnosed with ADHD and we've added paying attention to how ADHD meds are/are not working for him, how to help him manage his big feelings that sweep through with lightening speed and worry about the executive function challenges of middle school that are coming up in 6th grade. 

While it's stressful to raise a kid with special needs, I've found the kinds of stress to be really different depending on the category of the challenge.  Here's my breakdown:
  • The stress of medical special needs kind of feels like getting clubbed to death. 
  • The stress from managing developmental special needs might be best likened to death by a thousand paper cuts. 
  • Behavioral special needs can feel like there is imminent risk of bodily harm (to yourself or your kid, depending on the day and the tantrum). 

The joys are different too.  We don't celebrate echocardiogram results and dropping meds from the regimen anymore.  Instead, we high five when Simon asks a "why" question and cheer when he gets his dirty dishes from the living room to the kitchen without a distracted bypass to his bedroom with dishes still in hand. One isn't better or worse than the others, just different. Actually, that's bullshit. I'll take the behavioral stress over the medical stress.  The threat of death sucks the big one. 

It's all a lot and with Simon, much of it isn't obvious at first, which also feels hard.  Sometimes it feels like we're carrying this enormous load and you can't tell if you just meet us. Laura and I often talk about how we wish there were some secret signal for other parents of kids with special needs to “flag” that we’re a member of the same club. This has been proposed a few times, but it looks way too much like “Heil Hitler” for me to promote.  Still, how amazing would that be?!

I love getting to be around other parents of kids with special needs, whatever stripe.  And, there's something unique about people who are wrangling more than one. About 7 years ago, a few of us that were in an early intervention program together formed the BAD Mamas (Bitchin' And Drinkin' Mamas). Every couple of months we soak in a hot tub, eat cheese, drink wine (well, the other ones do) and bitch about all our woes.  And because we all have kids that have medical AND developmental and/or behavioral stuff, we effortlessly swing between work challenges, medical tests, new diagnoses, IEPs and who our favorite caseworker is this month and everyone just nods.  There's no explaining, no worrying about stressing someone out, no need to be careful.  We just let it all hang out. 

I'm so grateful to get to belong to so many people. Queers.  Oaklanders. Public Health workers. Parents of kids with heart disease.  Parents of kids on the spectrum.  Parents of kids with squirrel brain (as I call ADHD). Jews. Partners of Chaplains. The list goes on. 

And on extra hard days, I'm extra grateful for my BAD Mamas and all the other parents out there whose lives double and triple up on those bubbles.   It's not something I would choose, but I think those of us who live these wacky realities belong to each other in a way that can only be forged by being squeezed between a rock and a hard place.  Silver linings.  They're everywhere. 

School photo aka Brute Squad application pic

Hawking gelt at Trader Joe's

Sacked out in the airport during a delay

Vikings in Canada!

Headed to the Oakland Women's March with Mamaw

1 comment:

Lydia said...

Hello! I'm not sure if you read your comments, I'm one of your longtime lurkers.

About a year ago, one of my relatives gave birth to a baby who had down syndrome and a heart defect. They didn't know about the baby's health problems prenatally, so it was a big surprise for them on delivery day.

Thank you for all of your informative posts about raising a child who has multiple health issues. Even though the diagnoses aren't exactly the same, your posts were and are so very helpful.