Thanks To Autism, I Can’t Even Answer A Simple Question
I have a feeling this post will probably make the most sense to parents of children who have “invisible” conditions like autism, PDD-NOS, and behavioral, emotional, and mental health issues, but everyone’s welcome to read along and join me where we live. This is incredibly difficult for me to write. Once I put it out there, it’s out there. Part of me wants to shed some light on our lives because if you’re reading this and you have a child with complex emotional/behavioral issues, I want you to know you’re not alone. I need to know I’m not alone. The other part of me is terrified that if you read this you’ll look at our otherwise amazing daughter through the lens of “Oh, I didn’t know she had so many “issues”. You poor soul”. And then she’ll be less than the incredible little human being she is in your eyes from this point forward. I think this fear keeps many of us families who live this life completely isolated from the “normal world” for years and years. We want you to know why we can’t attend two birthday parties, an orchestra recital and a soccer game in one week, but we don’t want you to think less of our children because what is “normal” to you is just completely overwhelming for our kids. Some days we can’t do even ONE thing with the outside world (appointments, trip to the library for story time, outings to museums, parks, playdates, and the like). Some days we can’t get one thing done within our own homes for all kinds of reasons; lack of sleep on our child’s part, them waking up feeling “ouchy”, or having a bad sensory day (clothes don’t feel “right”, the toast was overcooked, the eggs were under cooked; our kids can have a variety of triggers that literally unravel them before our eyes and sometimes it takes all day to get them back). So we deal with “stuff” but often alone.
So here’s what was going through my mind last Sunday as we were getting ready for church: “What am I going to say if someone asks me how I’m doing or how our weekend has been?” This is a real conundrum for someone like me who is usually so candid and honest-to-a-fault. Do I just say, “Oh we’re fine”, despite the fact that 24 hours earlier I was out of my flippin’ mind with the child who can start an argument faster than MacGyver could start a fire with a strand of hair and a leaf? How far would I go in answering that question? In all reality we were okay, I guess. I mean we were all still alive. Barely.
Really this post isn’t about what to say when someone asks you how you’re doing. I think we can all agree that that question is just perfunctory and not intended to open a whole big can of worms into the intimate details of your family life. What this is really about is what sometimes feel like living a double life when you have a child on the autism spectrum who can be so incredibly engaging and a joy to be around one minute, and then the very next, if you answer a question in the “wrong tone of voice” or wait too long to respond to what they’ve said, the entire world blows up. And it can stay blown up for a very long time. But then you’ve got to pull yourself together to go to the grocery store, or drop some books off at the library, or go to your weekly mani/pedi appt, your spa day, or your book club, so life marches on and you’re supposed to keep your wits about you so when per chance, you meet up with someone familiar you don’t fall apart like a bad soufflé when they ask you how you’re doing. (Sorry, those last three options were purely to see if you’re still reading this. If you have weekly appts to take care of yourself and you’re able to treat yourself to days at the spa, you’re my hero, but you probably won’t relate to anything in this blog).
The nightmare of last Saturday is probably not unfamiliar to other parents with kids on the spectrum (plus other “fun” issues that make autism seem like a walk in the park): It started immediately after we left a “breakfast with Santa” event, but a big chunk of the day was saved in large part by our wonderful little next door neighbor friend, Kaleb, who spent most of the day with us and acted as a God-sent distraction and buffer between the girl-child and us. But then we had to return Kaleb back home, and my daughter (who’s also part Bloodhound) picked up the fight where we had left off. UGH. That lasted until we went to the Christmas parade in downtown Our Town. HoHoHo. Looking back now (after sleeping for more than one hour at a time for the first time in at least a week) I can see that the avalanche was powered by some innate things that come with my daughter’s autism diagnosis, namely:
1) The inability to recognize that it’s not okay to jump into conversations in which you’re not involved. She thinks just because she can hear two people talking (mainly her father and me in the car, barely talking above a whisper) that she can just jump in with comments, opinions and stories of her own. Usually I handle it better, as it happens about 145 times a day, but last Saturday my hubs and I were speaking barely above a whisper (another special gift of our Aspie is that she has SUPER human hearing) and I was at the end of my patience with being interrupted.
2) The inability to recognize that it’s NEVER okay to comment on or correct an adult’s behavior or what they say (my hubs and I are old-school where we believe that children who really understand what respect-for-elders-is-all-about are much more self confident, self actualized, and very pleasant to be around).
And finally, 3), my daughter’s inability to understand that her flat and monotone voice rarely sounds “jokey”, even if she uses “jokey” words and phrases, but regardless, that it’s never a joke to lecture your parents. All of these traits are completely driven by her Asperger’s diagnosis (and throw in some basic childlike immaturity, which is common to all kids, but the BIG difference here is that many typical kids will file away lessons learned and do their best to not cross certain lines. Not so with our daughter. Everyday is a brand new day. We just call our life “50 First Dates”) but none the less, we ended up having a MASSIVE misunderstanding because she insinuated herself into a private conversation, thought she was making a “joke” and then proceeded to rattle off the laundry list of things we do “wrong” as parents. It was just a bad, bad cocktail at 9 in the morning.
And this is not uncommon with our kids; many of them do NOT understand the basics of how language is used in normal conversations and they often don’t recognize subtle nuances of “higher language”, so we get into these CRAZY loops of insanity and before you know it you are out of your ever-lovin’ mind. Worse yet, you don’t know how to stop the craziness and your child is completely freaked out. You are BEYOND freaked out. The day is shot. You want to drink HARD but they just don’t make enough alcohol.
So, “how are you?” It’s a loaded question. Be ready for the answer.