To the untrained eye, our life looks difficult. We have a daughter with Down syndrome and a baby boy with a limb difference. Every single weekday involves some kind of therapy for one or both kids, and then we often tack on medical appointments to whatever free time is left in the day. Every meal and snack is planned and executed with precision, from diet to presentation to obsessively making sure food is properly chewed before it is swallowed. Playtime is more often than not an extension of therapy, whether focusing on the pincer grasp (OT), navigating in our SMOs (PT), or working on tending to difficult tasks (DI). Nothing can be taken for granted around here.
Families with special needs come in all different packages. Some require more support than do others. Some have medical challenges, some have emotional challenges, and some have both. You can’t lump us all together, even when we have the same diagnosis. Our children are as individual as are our family dynamics. But we do have some similarities.
We don’t experience boredom. That feeling you get when you check iCal only to discover there’s nothing in it for the day. You send out a dozen texts before 7am to see if anyone is available for a play date. You casually stroll through your yard hoping to lock eyes with your neighbor, if not to schedule a play date, at least to briefly acknowledge the existence of another adult in the vicinity. But nobody texts you back. And your neighbor isn’t coming outside anytime soon. Okay, so we know that part of the story pretty well, but we were merely trying to connect with the outside world between appointments. We have a few scheduled today and between appointments will put into practice everything we were instructed on this week. Mama might even be able to sneak in a trip to the drive-thru Starbucks between sessions. Might.
We have a network of likeminded parents. Totally built in. Totally for free. Now, this comes easier to those with a more common diagnosis, like for us with Down syndrome and the general category of limb difference, which often groups itself with limb loss. Those with rarer diagnoses have a tougher time finding their communities, but we at least get to see each other in the lobby of a therapy center or at our child’s school, and at these places we clearly have at least that in common and have something to chat about while we wait.
A diagnosis is like getting a FastPass at Disney but for insurance. The hurdles some typically developing families have to jump through just to get evaluated for services, let alone for coverage of their necessary therapies or treatments, can be extraordinary. But all I had to do was call insurance, share our diagnosis, and a gazillion sessions were graciously handed over on a silver platter. Okay, not really on silver…more like on a flimsy paper plate that could buckle at any moment…but we got what we needed, thanks to those who came before us, advocating for future generations. Advocating for our beautiful daughter and baby boy.
Speaking of FastPass, we totally get one of those. Plus it’s paired with the new Disability Access Service. Do we need it? Probably. But I think we get it because the general population is scared of what will happen if one of our kids has a tantrum at the happiest place on Earth.
We have a specialist to answer any question that pops into our worried minds. We all have Dr. Google, true, but our family and others like us have access to search results from actual educated human beings who shared their cell phone numbers in a treatment room when panic struck our faces for one reason or another. And because we are perceived as a vulnerable population, our questions never go unanswered.
Don’t get me wrong, the day to day can be fatiguing (isn’t that true of all parenting?!), but whether we get paid back in hugs and smiles or a positive report of growth from a teacher or therapist, it’s all relative. We’re fine. We’re more than fine. We might look a little different, but please stop feeling sorry for us. These gorgeous faces are matched with equally gorgeous personalities. There is nothing to feel sorry about.
This is not a complete list, so if you have some of your own secret perks of being a special needs parent to share, please do so in the comments section!