All I need to know

When a new, strange behavior surfaces in Rhema – or one we thought we’d moved past comes back with a vengeance – we are left scratching our heads, wondering why, and only the good Lord knows. These behaviors in the past have included head-banging, screaming, flopping, pica (eating non-food items like, say, lead-painted window sills), stripping, bolting, paper shredding, hand-biting, hair-eating, obsessive compulsive patterns, fecal smearing, aggressions, meltdowns.

Yes, this is our autism.

We’ve made up our own names for some behaviors.

  • Blind Girl routine – when she refused to open her eyes and walked around crashing into things. (This one, quite troublesome, lasted on and off for months.)
  • Autism Bumper Bandit phase in which she would rip magnets off cars and break them into tiny pieces.
  • Mommy Be Quiet! – A (thankfully) short period in which she screamed/tantrummed if I spoke. At all.
  • The Squat Walk – a phase in which she would take a few steps, drop and squat, take a few steps, drop and squat, etc. We spent a lot of time in parking lots, and fortunately this did not occur simultaneously with the Autism Bumper Bandit phase!

The latest behavior du jour? Shirt sucking/chewing/eating.

I’ve been saying to her what my mom used to say to me when I inhaled my food, “Girl, you make it look like I don’t feed you!”

When I discovered she’d lost a tooth the other day, the light bulb came on. Oooohhhhh. The sensation (or even pain) of the loose tooth caused her to gnaw her clothing! This theory was confirmed by her teachers who track many of her behaviors: the chart for mouthing showed a significant increase over the past few weeks… and then a sharp drop to zero as of two days ago.

Mystery solved! And with that, (sniff), we turn the page on the Eat the Shirt Off Your Back chapter.

So we lost our shirts this go round (ha!), not a big deal. But there are times when certain behaviors send us into crisis mode. These are the days when every little thing is hard – sleeping, eating, dressing, leaving the house, transitioning from one thing to the next. These are the days that break my heart, bring me to my knees.

And no matter what the behavior looks like, one thing remains. I wish I knew. How I wish I knew what goes on in her beautiful mind. I long with all my heart to have a real conversation with her. I have so many questions, so many things I want to know. What is your favorite color, really? What are you saying when you hum? What do you love and why? Why do you weep at night sometimes? What do you need from me? Sweet baby, does anything hurt?

“I want to trip inside your head,
spend the day there…
to hear the things you haven’t said
and see what you might see…”
~U2

It’s in a mother’s wiring to give her child what she needs. What do you do when you don’t know what that is??

A promise:  

“…For your Father knows what you need before you ask him.” Matt. 6:8

He knows. And knowing that He knows is a comfort somehow. The One who has the count of her every thick curl, collects tears in a bottle, painted her like sweet chai, named her and loved her before I knew her, knows. She is not a mystery to Him.

(So Lord, I need you. Teach me how to take care of my girls, and my husband, too. Give me better understanding, deeper love.)

“…For your Father knows what you need before you ask him.”

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39 thoughts on “All I need to know

  1. Beautiful, as always :). I must admit, I had to chuckle at some of the behaviours/obsessions. As autism mums, we often nod our heads at each other in understanding with these things, but this time, I wanted to nod my head right off my neck and yell, “Same here! Same here!!”. Lord knows how many times I have stood there looking at my son and wishing I knew what was going on inside his adorable head. Much love and hugs to you – I’ll be interested in following her journey with the teeth thing. My big girls are losing theirs at the moment….makes me wonder how Erik will be when it’s his turn.

    • thanks vivianne. rhema seemed unfazed by the first couple of teeth she lost. in fact, one day she (rather impatiently) got up, yanked her tooth out and then threw it in the sink!

  2. Sending hugs and lifting up prayers for you tonight, sweet friend.

    We have many shirts that look like that as well. Here it’s not a teething thing and we’ve not yet found a solution so he just chews and chews. 90% of the time, Parker wears Kev’s t-shirts at home and he’s chewed up almost every one in the drawer.

  3. Amen! HE knows. Praying that floods you with comfort today!

    We’ve lost our fair share of shirts (collars and sleeves both) to chewing. It wasn’t our teeth though, it was a NEED for deep pressure. Trying to substitute chewing gum and chewing stix now, as well as meet those needs for deep pressure other ways. Strength as you ‘go with the flow’!

  4. We haven’t hit the bumper magnet bandit phase yet, but have experienced all the other behaviors you mentioned. I hyper-analyze, trying to determine what in the world is causing them. I think the hardest is when Jack is hurting himself or others. It’s heartbreaking, and at times even the best medical and behavioral experts can’t figure it out. And what if he’s in pain? At times I have no idea… It’s so hard but reassuring to know we aren’t alone in this.

    • yes, most days that’s the question i want answered more than any — are you in pain? do you feel sick? where does it hurt?
      God knows, Jude. He will help us.

  5. Such a comfort to know He is in charge. How much we love our children and grandchildren and still he loves them more!

    Thank you for blessing me, gail

  6. Thank God that God knows…

    My brother used to have a major issue gnawing on shirts. For him it was an anger issue; something he’d do when he lost his temper. For quite awhile many of his shirts not much different from the picture you posted above! My mom used to get so tired of him mauling new clothes. You’re definitely not alone in this one.

  7. So much what I needed today. For not only my Ian but for all that I lead/care for/love…I rarely feel competent, rarely feel I know what they need or how to give anything to them…God alone makes me do anything right…God alone knows all about them…

  8. We’re still in recovery from the paper shredder phase. I literally had to hold both of his hands when we walked down the hallway at school so that he wouldn’t rip down the bulletin boards!

    Someday we’ll be able to ask them what they were thinking! I have a long list of questions for my boy!

  9. There’s a quote for this – I know I can’t find it but you might – that I do pray when he seems to be in pain or suffering that I could carry that burden for him for just a minute, an hour, a day. I suffer more not knowing what is wrong than I would from the pain itself.

  10. I’ll be praying for you tonight as I so often do. We don’t deal with most of these issues but at the heart of it all, no matter how each persons autism manifests itself, I do think all us parents wish we knew what goes on in our kids heads and wish we knew how to help them or give them what they need and want. xoxo

  11. I am always uplifted by your writing and perspective. No one else could discover the wonder, mystery, and beauty in your precious girl. Praying that joy and hope overshadow the struggles in the next week.

    During these crisis times at my house, I do things

    1) Sing, quote, even YELL Proverbs 18:10
    2) Look at my girls 1st progress reports. It reminds me of how FAR she has come. It doesn’t make today any easier, but it reminds me of how far God has brought us and that He is faithful.
    3) Remember Shadrach, Meshach, and Abed-Nego. Daniel 3:17-18. He is able to deliver me, “but if not”….I will still trust in him.

    Praying for blessings and peace.

  12. How beautiful that conversation with your daughter will be when you get to spend eternity in Heaven,and you can talk and laugh and engage forever… where there is no more question and no more imperfection. Praying peace over your house tonight!

  13. We went through a shirt chewing phase during loose teeth over here too. You may not know now what she is thinking, but she KNOWS you love her. Beautiful post, as always. xo

  14. You speak for every parent who has a child who is not quite verbal. Thanks for sharing this. I was fortunate enough to come upon your site and can very much identify with many of the entries that I have read here. My son is turning five next week and requests things that he wants but is not conversational. I often wonder what he’s thinking and can’t wait for the day that he can tell me.

  15. I’ve read a little of your blog just now, and I’m going to read a lot more! I loved the list of names for the autism routines. My daughter (who is 7 and autistic) went through a shirt chewing phase, and it hadn’t really occured to me until now that it stopped after she lost her first two teeth. There are reasons for the things they do—I wish it wasn’t so hard to figure them out so often!

  16. Pingback: Holey « Autism In a Word

  17. We had the “blind boy” routine a few months ago! Right now we have a “I want to go into a closet and poop on whatever is in there” stage. Aaah, it’s not a boring life!

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