A few weeks ago, we went to a Down Syndrome Guild picnic at a local amusement park- the kind with the rides that are scary cause they’re real old and the only thing they really do is make you feel a little sick. We’ve done a handful of Guild events but I tend to struggle with them. Understandably, parents of young kids with Down Syndrome are almost perpetually concerned with their kids meeting developmental milestones. When you get a bunch of those parents together, it unavoidably becomes this game of 20 questions to find out if their kid is ahead of or behind your kid developmentally. It’s not malicious in any way at all, but I dread it because, when we play the comparison game, The Baby almost always comes in dead last.
Also, The Kid drew a mustache on The Baby in the car on the way there, and I had no way to remove it without ripping his skin off, so there’s that.
I don’t really want to write about this. I’m afraid it’s going to come off as whiny or shallow. It is certainly centered on my feelings and not his (he’s happy as a clam). But I’ve committed to sharing this whole journey with you, even the hard parts. I don’t want anyone to ever read my blog or see my life and think that adopting a special needs child is easy. It’s not. (For the record, adoption is never easy for anyone- especially adoptees and first parents.) From a parenting perspective, this has been so much harder than I anticipated (and we anticipated it being hard).
In our little universe, within the confines of our house, I am mostly fine with The Baby’s development. He is almost 2 years old. He can’t sit up. He’s not really aware- doesn’t seem to care who’s holding him, not super interested in toys, not interested in feeding himself. His development is painfully slow but it is forward moving. Even minor things, like holding two cymbals together and clapping them for a while, are a major deal. When he held a piece of beef jerky and brought it to his mouth, we celebrated like he was going to college. That is a big success. He might do something spectacular once and then not do it again for two months. In the confines of our house, I’m okay.
However, we do not live in a hole and, as much as I wish it could be, we are not the center of the universe. And I have to go out into the world and see neurotypical kids that are right on track. And, I’m not going to lie, it makes me want to scream.
If you’re a facebook friend and you post pictures of your five-month-old baby running a marathon or your one-year-old reading a historical fiction novel, there is a chance that I have rolled my eyes or signed heavily.
Of course, it’s no one’s fault and I know it’s stupid (“Look at that mom over there just holding that baby who’s putting that toy in her mouth like it’s nothing. What a jerkwad.”) I listened to The Liturgist’s podcast on Spiritual Trauma (PS- everyone should listen to it) and it helped explain some things that I had been feeling. They talk about Trauma (with a big T) being something that everyone knows and acknowledges is trauma- sexual assault, death, disasters, etc. But there’s also trauma (with a little t), which could be something as small as an upset in your social circles.
I think that The Baby’s slow development counts as a trauma for me. As much as I just want to be fine with it, there are times where the fear and jealousy and comparison feels palpable, with fear being the MVP emotion there. For good reason, I just keep my head down and take things a day at a time (“Today was a good day. He was more aware than normal. He did a good job eating those smashed peas at dinner.”) Whenever I pull out and try to look at the big picture (or am confronted with a younger baby who knows what’s up), I quickly get overwhelmed with the looming questions that we have about what the future with this kid is going to look like. Does he have autism? Will he ever sit/stand/speak? Did those seizures do brain damage? What if he never really gains awareness? What does that look like for his quality of life? What does it look like for ours?
And then waves of despair crash over me.
And before you say, “Oh, he’ll get there. He’s just on his own timeline”, please know we’ve heard that before. We know it’s unlikely that he’ll NEVER xyz but that doesn’t make it any easier in the short-term, especially since we have no control or knowledge over his developmental progress. He’s been “working towards sitting” for over a year. He’s almost two and he doesn’t respond when we do peek-a-boo.
It feels like a bit of a slog through the swampy waters of uncertainty and there are days where we feel weary and scared that we’ll never get to leave.
I know there will be people that read this and think, “Wow. That sounds so hard. What can I do to help?” and truthfully, just knowing that you know it’s hard is comforting. Obviously, people are going to post pictures of their babies doing things on social media and obviously, people are going to continue to insist on taking their neurotypical babies out in public to do such brazen things like run errands or go to the park. I’m a big girl and I can handle it- most days even handle it well.
I might decline your invites to the playdates. I will most definitely be the quiet mouse in the corner during the conversations on developmental progress in kids. I might joke about The Baby being a lump because humor feels better than all-encompassing fear.
And, yeah, I might unfollow you for a bit if your facebook feed is non-stop pictures of all the things your baby can do. If you need us, we’ll be over here banging some cymbals together taking things moment by moment.