Wednesday, July 6, 2011

What I Meant to Say

*This actually happened awhile ago when I went to see Sean in Texas. After that we vacationed and did the whole "complete family" thing, but this was always at the back of my mind. I wish I was faster/braver/wiser in these situations. I wish I could relive that day and just hand this to her. But I can't and so you have to listen to me instead. Who knows? Maybe through the magic of the Internet and the universe she'll know what I meant to say.*

I saw you in Starbucks with your beautiful boy. You were two people ahead of me in line to order. I was enjoying a day free of car seat machinations as Nana and Aunt Carrie were spoiling Sweet Girl and Little Man at home. I wasn't thinking of anything in particular, mostly that it was nice to be able to get a cup of coffee in the middle of the day. I had left my constant research and behavior analysis at home with my children and had instead been reminding myself what it's like to reach over for your spouse and find him there. But then I saw you and your beautiful boy and it was all there with me again. I had a lot to say to you but kept my mouth shut instead. I didn't say anything because we've never met.  We've never met but I know you.

Your little boy is (probably) a year/year and a half younger than my daughter. At first I didn't realize he was with you.  He was in the store but not standing next to anyone or anything in particular: rather he was constant motion.  Then I heard you address him and ask him to stand next to you, and I realized he was your son. Just like you, I've never met him but I know him too. I know he can't stand still next to you in a line despite his best intentions. I know the loud conversations, the strong aroma of coffee, and the constant whirring and grinding of the machines were sensory overload for him that day. I know he doesn't play like other kids. I know he has certain things that he can handle, but much of the world is just too much for him to process. I know he's more comfortable on his own. I know that he's a good kid and has a great heart and that his behavior that day was not a result of an unloving home environment, lax parenting, or an indulgent lifestyle; it was self-preservation. I know your little boy because he is my daughter.

I saw the looks the others were giving the two of you.  I know that feeling of silent (and sometimes not-so-silent) judgement; how others are measuring up your parenting skills based on a 10 minute experience.  I have had to stand where you stood that day.  For Sweet Girl and me, it was a trip to Target.  I was still waiting for an evaluation and an official diagnosis so we could get some therapies started for her, but I wasn't waiting to to start making some changes.  Starting with her diet.  She never did like vegetables (same here) but the more I read and researched the more I became aware of what I could do to get them in her diet regardless.  The only thing in the way of providing her with better nutrition, was a juicer. 

The night before our trip to Target, Sweet Girl woke up at 3 am.  Boy did she wake up.  A rope ladder short of climbing the walls is a more accurate description, and I got to be there to witness it all.  I was exhausted when daylight rolled around.  I was sure that her mind and body would crash at some point and she would fall asleep for a morning nap.  Wishful thinking.  So I put her in the car for a 30 minute trip to Target.  At this point in time, Sweet Girl was sleeping through the night 3 out of 7 nights a week and she could not handle trips to the grocery store without a meltdown.  She was pretty much non-verbal as well, so I'm not sure what it was that set her off when we went shopping but I'd bet it was sensory overload.  There's just too much much.  Of course she fell asleep in the car on the way to the store.  So I was faced with a choice:  I could go home and hope she slept some more or I could wake her up and complete my task. 

I woke her up.  Boy did she wake up.  From the time her eyelids opened to the time we made it back home, she screamed.  She didn't have a fit.  There was no manipulative wailing or throwing herself down on the ground - this was not a temper tantrum.  This was a release valve for exhaustion, for bodily pain, for near-crippling anxiety, for an overworked brain flooded with sounds, colors, smells, people, and objects at high speed.  This was a literal cry for help.  She just wasn't sure what it was she needed help with.  I held her as close to me as I could while still having her sit in the cart and hurriedly grabbed the juicer.  At the same time I continually whispered/pleaded with Sweet Girl that we would be all right.  If she could just focus on Mommy then we would be all right.  But we were beyond the point of reason.  She was too panicked and tired.  Instead of focusing on me, Sweet Girl focused on screaming.  People stared.  Some offered to help in any way, but most just looked with a mixture of pity and annoyance.  I was too tired to tell them all that this may just be a trip to the store for them, but for this not-yet-two-year-old it was close to torture.  It was torture for her and for me, and I was desperately hoping and praying that I would find a way to make it easier for her.  Desperately trying to make the world seem less foreign and hostile.  Desperately trying to give Sweet Girl a way to say "help" without the screaming.  I wanted to tell them that this was loud and ugly but just give her time rather than your judgement.  But it would have taken me a long time to tell everyone that and time was not kind to us that day, so instead I put my girl and their judgment on my back, checked my pride at the carts, paid, and left.  So I know all about public meltdowns.  I knew exactly what was going on with you and your beautiful boy.

I saw the moment when it became too much for him.  He had been trying to deal with it in his own way; the constant motion.  But after he bumped someone at a table and he received a dirty look (to which he was completely oblivious) you picked him up.  I know what you were thinking.  That this should be easier.  That you're bone-tired and soul-weary and you just need a cup of coffee.  That other people bring their kids to places like this all the time without ever having a problem.  That if you can't get coffee without a battle then what else will you have to give up?  I've had those thoughts too.  All the while, I saw that the lack of motion was about to set off a meltdown but I was thinking that maybe they would have your drink ready in the nick of time.  Almost, but not quite.  I heard him start to scream.  Saw him push away.  I noticed the door had been left wide open to the busy parking lot, and that a set of panicky eyes were locked on it.  So I took two steps to the left and stood firmly as your beautiful boy ran into my knee.  You, red-faced and teary-eyed, grabbed him and apologized. Then you left without your coffee.  We've never met, but I know you.

When you apologized, I lamely offered "It's OK.  You're both just fine."  But what I meant to say was that it gets better.  And that might not mean you ever get to walk into Starbucks with your beautiful boy again, but it may mean that you drive through.  The coffee tastes the same that way.  Or maybe you find an amazing therapist/sitter/family member that can stay with your son, in a place where he is comfortable, while you go grab a cup of coffee or a nap in the car.  What I meant to say was that you'll feel better sometime in the future.  Sweet Girl and I aren't that far removed from Target, and there is the potential for that to happen again at any place, but I feel better about my abilities as a parent and Sweet Girl's abilities to cope that I'm willing to risk it.  You won't have to be a hermit.  You and your son can find ways to deal with public places and eventually even enjoy them.  What I meant to say was that you know your child.  Don't let the judgment or inconsideration of others drown out what you know about yourself and your son.  What I meant to say was that there is hope.  Read everything you can and find what applies to you and your family.  Fight for what your son needs.  There will be a lot of people who tell you to get used to the behavior or to prepare yourself for the worst.  There's a certain amount of pragmatism to that advice, but I think this often comes from people whose world's are so small they can't accommodate growth and hope.  These are the people who are too afraid of dreaming to fall asleep.  There are a lot of these people but there are a lot of people who want to love, support, and nurture your son.  What I meant to say was that you shouldn't give up.  Don't give up on your son or on yourself.  What I meant to say was "I understand."  We've never met, but I know you.  What I said aloud was, "It's OK." But everything else here is what I meant to say.

6 comments:

  1. Wow. You are an amazing writer, but more than that, you are just a flat-out, freaking amazing mother.

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  2. The other day I was sitting in the dentist's waiting room, and there were two children, not related, that I recognized as similar to my spectrum boys. One was walking around the room, reciting dialogue, and the other was intently watching the fish tank, but with constant fidgeting. I kept reading my book (luxury!) but noticed the parents trying to corral their kids. I wanted to tell them not to worry, their children weren't bothering me, but it seemed invasive.

    Boy Four has made so much progress, I almost forget that he never slept. He still has bad moments, meltdowns, but even when that happens, he can recover. It's amazing. We still have work to do, but it does get better. I have to remind myself of that fact, because years of witnessing the bad have left me with an ever-present anxiety, but I guess I can have hope for me, too!

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  3. We discussed this before but it used to break my heart to see your Sweet Girl in distress and to know that if I reached out to comfort her I would only make it worse.

    So maybe, that day, too many kind words from a stranger would have overwhelmed a mother working on her own exhaustion and over-stimulization. Sometimes the kindness of strangers is a heavy burden to bear.

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  4. P.S. How did you know we were spoiling your children? :D

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  5. Oh Sarah! I think Carrie may be right that sometime well meant sympathy can also be a burden. This touches me because I want to hug and interact with Sweet Girl SO much but I know that sometimes that is just too much for her to deal with. So I love her from a little distance and keep savoring the moments when she says, "Hi Aunt Barb". I love you so much Sweet Girl.

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  6. What Carrie said. I think what you said in the moment was perfect. Anything more would have required her to stop and...well you know what that would have led to.

    BamBam and I were at an outdoor shopping mall near our house once when he threw himself on the ground and screamed for 20 minutes while I tried various things and finally picked him up, throwing him over my shoulder for the walk back to the car. While I was on the ground with him, a woman walked by and said, "Hang in there, Mom." I don't think I even acknowledged her comment at the time, but it made a difference. I'm sure yours did, too.

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