The Unsinkable Mom of an Aspie

On President’s Day I had the brilliant idea to take Bailey to the Franklin Institute to check out the science museum and Titanic exhibition. She is an explorer and absolutely loves museums. It was a holiday and from the time we walked in we were rubbing elbows with rest of Philadelphia. It was too late to turn back in my opinion. I have the “I’m in it to win it attitude.” Once I get some place I might as well stay and make the most of it. But I soon learned that a nice quiet day curled up with Bailey, a movie and popcorn would have produced a lot less tears for her and a lot less gray hairs for me.

We started with the Titanic exhibition. We were each given a “boarding pass” that represented a real passenger with tidbits of information about them printed on it. At the end of the exhibit we were to look on a posted list to find out if we survived. She was very excited be dog lover that had a Westminster show dog. I was excited that I was a 22-year-old actress, half her age. She asked many times throughout the exhibit if I thought we survived. She was very interested in all the artifacts and asked lots of questions. She was especially interested in the giant “iceberg” set up in the large room near the end of the exhibit. She stayed next to it for a very long time, putting her hand inside all of the handprints of the people before her, running her hand along the entire thing. When I managed to pull her away from the iceberg we made our way through the rest of the artifacts and we came upon a piece of iron in a glass case with two very small holes at the top allowing visitors to insert a finger touch it. It had to be the only thing in the entire exhibit we were allowed to touch. After I had my chance Bailey walked over behind me and I turned away just long enough to hear her gasp a loud “oh no!!” I turned around to see her face twisting into a panic and I followed her line of sight to see the hot pink ponytail holder that was seconds before wrapped around two of her fingers, but now was sitting pretty as you please next to the 100-year-old Titanic artifact. Knowing it was impossible before I even tried I quickly shoved my finger into the hole in a vain attempt to rescue the ponytail holder before anyone in the crowded room spotted it. Of course my finger was several inches too short and I had nothing on me that I could stick down in the case to grab it. As I feel my face getting a red with embarrassment it occurs to me how very quiet this crowd is in this big room because Bailey starts crying hysterically that she will never see it again and she loves it and a lot of other things I couldn’t make out. For a few seconds I considered high-tailing it out of the exhibit and just leaving it there, but I knew that would ruin the rest of her day and our museum visit would be done for. I glance around at all the eyes in the room shooting us looks as I try to calm her down and remind her that she has a dozen of the SAME EXACT ponytail holders at home, but it didn’t matter. She “loved THAT one” and “would never see it again” and “would never be happy again!” I was thankfully able to find a very nice museum employee close by who called for a tech to come help. After a looooooooooong 15 minutes of Bailey clinging to the artifact display in hysterics, me half wishing I could just hide behind the gigantic iceberg and half fixating on the fact that a few of my baby’s long light brown hairs may take up residence with this hunk of iron from THE Titanic, and a lot of sympathetic stares, three more museum employees showed up with their invisible capes to save the day. A quick swish of a screwdriver and the hot pink ponytail holder was rescued. I can’t say how grateful I was that they were so nice about everything. One guy even threw out a merciful “happens all the time” when I apologized.

Thankfully the rest of our museum visit was uneventful. As we were sitting in the IMAX theatre watching the Titanica film and Bailey is fixating on whether the teddy bear belonging to the survivor being interviewed made it off the ship safely, she turned to me and apologized for embarrassing me (progress!). Then I felt bad that I had even muttered “this is so embarrassing” knowing the turmoil she was in over the whole thing but then I felt proud because not only did she just recall that something she did earlier affected someone else, but she apologized way after the fact. Any instance where she looks outside of herself is a major step in the right direction, so I gave her a squeeze, said it was ok and I was sorry too.

Later we met up with my husband, Easton, to eat at a restaurant that had absolutely nothing on the menu that my child would let touch her limps, besides tostito chips and salt. But she was in a new place, it was colorful and we were in “adventure” mode so everything was fine until she knocked over her glass and it shattered into 50 pieces. Still, not a tragedy. We apologized, paid the bill and left.

But the icing on the day’s cake was when we were walking through probably the largest Macy’s store I’ve ever been in to get to the parking garage where our car was parked, and Bailey decided to pull one of her nerve-racking “bolting” moments that I’ve written about before, here. It’s partly my fault and I should’ve known better. I’m usually very good these days with my Bailey filter. You know, the one where I keep everything I know will set her off to myself. I carelessly made a remark, something to the tune of “wow, you’re a hot mess today! First the ponytail holder and then a broken glass…” Now, to the unsuspecting person it’s a harmless comment. But to Bailey I’ve delivered the biggest insult and might as well just have told her she is the worst person ever to walk to earth. That’s what she hears.  And when she’s mad she runs. That’s how she processes her anger. So off she goes ahead of us like a cheetah and I lose her as she runs past a large floor sign into a sea of cosmetic counters.

And she’s gone.

Let me remind you, this is the largest Macy’s I’ve ever been in and it’s also the first time I’ve been in this particular one and I have no idea where to look. She absolutely just disappeared. Easton ran down one way and I ran another, feeling panic that the store entrance is right on a busy street and we’re very close to the entrance. I’m panicking, asking this person and that person if they’ve seen a little girl run by. No one has seen her. I turn around and start in the direction Easton ran, looking in-between counter after counter until finally I spot his head above everything and I pray he has her. I reach him and he’s holding onto Bailey and his face looks a cross between furious and relieved.

Time to go home, I say, enough excitement for one day.

You know how you always say “we’ll look back and laugh on that”. Well I’m there with regards to the ponytail holder incident and the broken glass is definitely small potatoes. But when I let myself think for a moment about how Bailey runs away without a thought of anything other than to just run, I get that panic in my chest all over again.

As I sat down on the floor of the living room later that night with my frayed nerves, I felt like I had actually been fighting my way to a lifeboat in a sinking ship, I just thanked God that she was home safe with me. It may have been a tough day but we got through it.

And in case you were wondering, my 22-year-old actress and her 41-year-old dog lover both survived the sinking of the Titanic. 🙂

Bolt

The blog Autism In A Word turns me into a huge puddle. Every one of her posts that I have stumbled upon leaves me in tears. The other day I read her post “Safer” (click to read, but be sure to grab some tissues) where she describes an incident when her daughter, Rhema, who is Bailey’s age but is more profoundly affected by autism, and is also nonverbal with a seizure and feeding disorder, disappeared as they were unloading from church. Apparently this is an ongoing and very troubling problem she has dealt with on many occasions. By the grace of God, Rhema has been returned safely to her arms each time.

It struck me how similar that behavior is in Bailey… the wandering and having no sense of danger. Bailey will also bolt at lightening speed when she is upset. On more than one occasion I’ve had to run after her in a department store, searching through and under racks of clothes to find where she may be hiding while nursing her anger or frustration. We can be browsing around peacefully and a minor collision between her and a sign can send her into a frenzy and she’ll run for the hills. I have an extremely difficult time keeping her with me when we go anywhere in public. Something will catch her attention and she will take off with no warning. No “hey mama, can we go look at that?”. Just swoosh, and she’s gone. Most of the time getting her to hold my hand is like a wrestling match with a monkey. Even when crossing the street, if something peaks her interest in the road she will snatch away from me to go back to look, paying no mind to the potential dangers around her. Most of our outings I spend using my acrobatic eyes… the left is on Bailey and the right is on whatever it is I’m looking for. Bailey’s cousin, Cowboy, said on more than one occasion during my family’s visit that Bailey needs a leash. I believe he’s on to something. She often wandered ahead or lagged behind the group, in her own little world. And just thinking back to her pulling from me to lean way too close to the incoming train to feel the rush of wind makes my stomach flip-flop.

I’ve stepped back before and watched her, keeping my distance, to see just how far Bailey would go on without me near her. It terrifies me…. how she will get lost in her head, start humming to herself, and simply wander off without a care in the world. She doesn’t watch where she is going so the possibility of stepping into the path of a moving car is a very real danger. She knows to look both ways when crossing but when she’s right there in the moment she just doesn’t. And she would make it simple for a person with evil intentions to take her. So I’m always right there, hovering.

I dread the day Bailey pleads for more independence. She is starting to notice that I am a lot more visible than the other mothers. I am trying to balance her need to grow with her emotional and social challenges. I try to keep a safe distance and still give her room to breathe. When I’m not there will she be able to snap out of her head long enough to pay attention to the world around her?

Will she look out for moving cars?

Will she bolt when something upsets her, oblivious to what is going on around her and what danger that may put her in?

Will she wander to an isolated place and disappear forever?

I’ve had the conversations with her. But will she be able to recall my words when it’s important? Right now she doesn’t feel the danger that is out there but I do. The worry eats away at my heart.

We all have to let go of our children at some point. We all have to trust that we’ve instilled in them the survival skills they need to make it from one day to the next. And most of them get it. But what about those that don’t? What about the kids on the very high functioning end of the autism spectrum who absolutely lose themselves to their thoughts, to what holds the most importance to them in that moment, to what is at the end of the tunnel they are looking into? What about the ones who throw every speck of caution to the wind… and give no respect to plain ol’ physical danger. That healthy respect that danger so rightfully deserves. This goes way beyond worrying that she may follow the wrong crowd.

Again, I am left with only one option. After all the warnings and cautionary tales, I can only put my trust in God. Without it I would end up in a straight jacket. With a stomach ulcer. And probably bald patches on my head. I already bite my nails down to nubs because of worry. I already have a crappy diet because of worry. I already lose sleep because of worry. I dread next year, and the year after, because of worry.

So I turn to one of my absolute favorite Bible verses:

The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (Phil 4:5-7)

And to keep the worrisome thoughts away I will try to think about these things…

Whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable–anything {that} is excellent or praiseworthy… (Phil 4:8)

So the God of peace will be with me.