All I have seen

Life in Autism Land often brings unexpected joy and beautiful humor, and I love having this space to record it. It’s startling how in an instant, moments in the journey can also bring a tidal wave of unsettling fear, heartache and discouragement.

On the whole, we have not experienced a high degree of self-injurious and aggressive behavior from Rhema. She’s certainly had periods of this, but it’s been about a year since we’ve seen anything of concern.

For reasons I may never know, Rhema’s aggressive behavior spiked this past weekend. Thankfully, all of it directed at me.  

Several times while we were riding in the car, she became upset, grabbed me by the top of the head and pulled out large clumps of my hair. On another occasion, seemingly out of the blue, she lunged toward me and clawed at my face. Honorable mention? She also got in a few really good bites on my hands.

Each time afterward she would cover her face and weep. Her cheeks hot, clutching fistfulls of my hair in her hand.

These moments are indelible scars to the heart. I watch her bewildered, hurt. What is going on???  So sad for her; I know this is not my girl.

I hold my breath trying to calm the fear and panic threatening to rush in. What if the aggressions get worse? What if we can’t stop this? What will I do when she’s fifteen? What will I do next week?

The Army is calling Brandon away for another summer; he leaves in two weeks. Last summer was the hardest time I’ve ever had handling Rhema’s behaviors, and I did it alone. Now, just as he’s leaving, the behaviors are ramping up. Again? How can I do this again?

I came across this quote last week and it whispers to me over and over:

“All I have seen teaches me to trust the Creator for all I have not seen.”
~Ralph Waldo Emerson

The husband goes shopping for a new refrigerator and I tag along, my whole being battling for calm, for thankfulness. I say to no one in particular, “Sometimes I almost forget she has autism. And then days like this scream at me ‘She really has autism!’”

Somehow the dude working at the store, in the refrigerator section, totally understands why we need special locks on the fridge doors. He happens to be a pastor at a nearby church. His son is eight like our Rhema is eight. His son happens to have autism. A divine appointment, yes, that’s what we call it.

We share many stories, even though we already know each other’s stories.

And then, on a rainy night on planet Earth, in the United States, in a small town in Massachusetts, at a Lowe’s store, in the refrigerator aisle, the three of us clasp hands and we pray.

And I know, know, know God is with me.

And with her. And with us.

.

All I have seen teaches me to trust the Creator for all I have not seen.

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29 thoughts on “All I have seen

  1. You words are a Light.
    ‘Thankfully directed at me.’ stuck with me.
    Thankfully?
    Could I be THANKFUL for that?
    Love those divine appointments like Lowes-man. We have found them popping up at the most crucial moments all over the world.
    Do you think R knows what’s coming this summer and is processing it in her own way?
    Praying Isaiah 40 strength for you!
    Love from Congo

  2. Oh Jeneil…another summer…
    I am very happy that you are finding more members of your village to be there with you. Whatever you need, reach out and we’re here.

  3. Oh J, I didn’t know that you guys would be apart for another summer. Oof, Tears in my eyes for many reasons this morning. Love you.

  4. My dear Sister, do you think Rhema senses that her Dad is leaving again, and this is causing some anxiety? She is so intuitive and sensitive. Praying your strength, and the peace of our Heavenly Father to keep you all. I love you!

  5. Hugs…can you feel the prayers being lifted? I love when God sends a messenger when we most need it. Not just the pastor placed in your path for you, but I am sure you were a messenger to him, allowing him to serve God wherever He places his servant. May these two weeks provide lots of 1:1 time for you and your husband, lots of good family time. Thank you for your faithful witness, and for that wonderful Emerson quote.

  6. Oh sweet Jeniel I am thinking of you and praying for all of you. I think I ask the same question that Suzanne asks, “Does Rhema know her daddy is leaving?” Has she heard your conversations about Brandon going away? I know that Dawson hears everything that we say and his anxiety and agression have spiked when he hears something he does not understand. I am sure that you have thought of this, but I will mention it anyway. Have you thoughts about putting together a calendar on the wall so that she can visually see when daddy is leaving and in “how many sleep nights” he will come home? Can her teachers at school put together a social story about Brandon going away and what she will be able to do while he is gone. I know that putting together these “tools” to help our kids can be very labor intensive and time consuming. Can you ask Rhema’s school and your faith communit to possibly help you put these together? I know that when I am in high stress place with Dawson then then tryng to get his “tool box” in order is very challenging and that I have to ask for help to get it organized. I know that my comment is rambling so I will end it here….please just know that we hold you….all of us hold you and your sweet family in our hands.

  7. “Thankfully, all of it directed at me.” Yes, because it feels even more soul-wrenching to have those powerful actions and emotions directed at a sibling, a grandparent, even a stranger. Oh, the things we autism parents are grateful for…

  8. Just want you to know that I’m here, praying, reading, just not saying much. I learn so much from you, and you have no idea how much your words encourage me in a completely different situation.

  9. Perhaps she’s having a seizure? Maybe different from her past seizures? A friend’s son becomes quite aggressive during his seizures but is fine otherwise. Just a thought.

    My son spent 5 months in-patient at Kennedy Krieger’s NeuroBehavioral Institute last summer/fall so I feel your pain with the behavior and the nervousness about being alone. It helps me to have my sister come over when my husband’s not around.

    Do you have a good behaviorist that might help you get at the function of the behavior? What does her psychiatrist say?

  10. “I know whom I have believed and am convinced that He is able to keep that which I’ve committed unto Him against that day.” 1 Tim. 2:12
    If I lived near you, I’d be your buddy all summer.
    As it is, I will lift you up from North Carolina and I will trust that the One we know can take care of you for me.

  11. Just a little while ago, I was screaming in my head, “I hate autism!” I love my Isabella just as she is but…I kind of feel like a traitor if I hate her autism. Sorry if I am not making sense.

    God is good so I know he will work it all out for our good. I know He has you in this venue for His good and perfect will. Thank you for being obedient, Jeneil.

  12. oh i love this story of lowe’s… how God hears us, he sees us, and responds to us. i will be praying for you!

  13. Thank you, friends, so much for the prayers and suggestions. We are so incredibly blessed by your encouragement and support.

  14. I love you, lady! I know your heart and feel it from here in Ohio and I know these fears of which you speak. I will be praying for you as you enter into this summer alone…and I have a feeling it’s going to be a magnificent experience…even during the difficulties…I believe you are being led through a new season.

  15. Praying for you all as you begin your summer without Brandon.

    I can only imagine how hard being married to a man serving in the military is. I can only imagine how hard having a daughter with autism is. All I can do is pray that God gives you and sweet Rhema and lovable Hope the peace and comfort you need to enjoy your summer together.

    (Is it possible that Rhema understands that her daddy is about to leave again and is taking her worries, fears, concerns about it out on you? Because you know – everything is always Mom’s fault – at least that’s how it is around here!)

  16. My son is non-verb, autistic and very intuitive. He’s also sat on my head too! Even though we try to hide stuff from him that he just doesn’t need to know because he is five, he still picks up on it. So when we are on edge, he is on edge and that causes his self-injury and aggression to increase. Like your daughter, he is heart-broken afterwards too. It must be frustrating for them to sense these things but have no release for it. It really does makes sense the adage “Behavior is communication.” I know he doesn’t want to hurt himself or others but sometimes the compulsion or emotions are just too strong. He is so loving, sweet and affectionate but even adults cannot control every their behavior and our kids are still just that, kids. Kids notoriously are impulsive.

    The stress of you having your husband leave and be deployed must bring a myriad of strong emotions for everyone affected by it. Neurotypical kids have behavior problems when their parents are deployed. My brother is in the Navy and seems to get deployed all the time and it is really hard on his kids. They act up too. It is so difficult and I wish there wasn’t even a need for deployment and for families to be separated. However, that wonderful sign from God by meeting that man at Lowe’s was God letting you know that you are not alone. He is Jehovah Jireh, the God who sees your need and meets it.

    I will keep your family in prayer and that the Lord will send help (help you can trust) your way.

  17. You are an amazing person to deal with everything and for months at a time without your husband. Do you think that the ending school year has Rhema’s routine thrown off and that’s upsetting her? I know my son Walker had more meltdowns the last two weeks of kindergarten than he had the entire year.

  18. Sending love, hugs, and prayers for you and your family. Love the story of meeting the guy at Lowe’s, what a blessing. I was going to suggest that maybe Rhema knows her dad will be away and the stress of that is what’s behind the behavior… I hope the time apart goes quickly for everyone.

  19. Powerful description of pain and peace all wrapped up in a moment when you needed it the most. As I’m reading at your blog today, I’m listening to this song (http://youtu.be/lvuLX8b4C-I); I’m thinking it’s God’s complete timing. I pray it a blessing to you whenever you receive it. I’m praying for you while listening. Jesus. Jesus. Jesus. Where else can we go?

    Lots of love~elaine

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