The Trouble with Autism


Rhema has had lots of trouble with toileting lately. She’s had accidents on the bus, at school, in her bed, everywhere.  Car seat covers, sheets, blankets, clothes, socks, shoes – I could not keep up with the laundry (well, nothing new there), and I felt my frustration growing. No matter how much I put her on the potty she was having accidents on the hour, it seemed.

Last night, after bathing her for the third time that day, she climbed into a toy box and wet herself again. She did not even seem to notice what she was doing.

And Momma lost it.

I grabbed her by the arm, dragged her upstairs to the bath tub, and then yelled at her, “What are you doing to me, Rhema!!??”

Growing up, no matter what kind of trouble my sisters and I found, my father never yelled at us. He never once raised his voice to us.

And here I was screaming at my little girl.

She stood there by the tub, arms at her sides, head dropped. Her sweet face was contorted, her little lips trembling. And I died. All at once my anger dissipated leaving only sadness and shame that I could hurt her like that. I dropped to my knees and gathered her in my arms, tears on both our cheeks.

It takes so much – a big voice, an exaggerated tone, an animated face, lots of movement – to get a response out of Rhema. I’d succeeded in getting a response, but it was so not the way I wanted it.

I just held her. Those minutes holding her I finally started really thinking about what was going on. And then the pieces to the puzzle started coming together – frequent urination, wetting herself even though she’s toilet-trained, rash… and there were other signs. A urinary tract infection. That was it. Suddenly it made so much sense.

A trip to the doctor this morning confirmed it.

It’s just a UTI. No big deal, really.

But this is my beef with autism: My girl has no possible way of communicating to me if something is wrong. She can’t tell me if something hurts, she can’t tell me how she feels… and she doesn’t seem to have the inclination to tell me even if she had the words.

The not knowing if or what is wrong is one of my biggest fears.

She’s been having symptoms of a UTI for weeks now, and I’m just figuring it out. (If you’ve ever had a UTI, you know how uncomfortable they can be.) I forgive myself for that – some of the signs could have easily been blamed on “behaviors”, the new drug she’s taking, changes at school, etc.

What is hard to forgive myself for is the way I yelled at her last night. The image of her standing there by the tub trying not to cry is seared on my memory, and it breaks my heart.

Today a friend reminded me of something new I got when I woke up this morning: mercy.

It is of the LORD’S mercies that we are not consumed, because his compassions fail not. They are new every morning…” Lam 3:22-23

And that’s what I’m holding to.

32 thoughts on “The Trouble with Autism

  1. Thank the Lord for his mercy!

    And thank the Lord that you figured out the problem. And who knows, had you not yelled at Rhema and gotten down on your knees to hold her, it might have taken you longer to figure things out.

    I’m praying for you and the girls today and every day!

  2. “It takes so much – a big voice, an exaggerated tone, an animated face, lots of movement – to get a response out of”…Mom.

    Beth might have something there.

    And the Lord gave you this blog to share your angst and all the many who understand and comment and pray for you, too.

  3. This post broke my heart. For you and for Rhema. For the truth in the stress and confusion of not knowing what the matter is. For the inability of our girls to tell us. For the way I could relate to moments of losing it. And the overwhelming guilt and regret in the aftermath of those times. You are so not alone. Your willingness to share your moments is part of what makes your writing so inspiring and real. You are an amazing mom. No way that the millions of moments you have shown Rhema and Hope patience, a true gentleness of spirit and an abiding strength will way overshadow the times your humanness comes through. They will learn, as you’ve illustrated so well here, that as much as we love them, there is only One who never fails. A most important lesson.

  4. I have a similar memory seered into my mind. I know that overwhelming guilt and regret, too. Thank goodness for God’s great mercy! And thank you for sharing both the good and the bad moments. I will pray that Rhema recovers from her UTI quickly!

  5. Thank you Jeneil. It’s exactly what I needed to read-I had my “mommy failure” today. Different circumstances but the reactions from myself and Ryleigh were very similar. Oye. All I can say is thank you for sharing-it really touched me.

  6. Please, please go easy on yourself, darlin. You are shouldering a lot – so much more than most of us can imagine. It’s so human to lose it, especially over the potty issues. We expect that if our kids CAN, they WILL, and that’s just not always the case.

    Reilly and Foster have had reflux for two full years, and I just figured it out this summer. I know how you feel for not being able to intuit what’s going on with your kids.

    Hell – Reilly had a tumor growing in his brain for probably TWO YEARS and we knew nothing.

    We’re humans. We don’t have x-ray vision; we don’t have the patience of saints.

    love. love.

  7. I bet every mom in the world has had these moments, but only a few are willing to (1) admit it, (2) learn from it, and (3) move on. You, my friend, are one of the few, and that’s what makes you such a great mom.

  8. … as the Lord has forgiven you, so you also must forgive (yourself) ~ my edited version of colossians 3:13

    you are the most tender, loving, gracious mother i know. and you are human. you are tested beyond any reasonable limits day in and day out. once in a while, the dam breaks.

    i ask you to read this post as if one of us had written it. what would you tell us? to forgive ourselves. to hold our heads high and know that we are loved just as we love – wholly and completely and forever.

    chin up girl. hear me?

  9. Oh, my friend, we have all been right there. There’s only so much we can take. I know that probably doesn’t help; it’s never really helped me. I vividly remember the days when Nigel couldn’t talk and I had reacted with negativity, thus upsetting him further. And then feeling terrible about it. The regret doesn’t really go away, but we do learn from it. *hugs*

  10. I know exactly what you are saying. I think about all the times I yelled or did things when I didn’t understand Jonathan was autistic and then after I knew he was.

  11. I’ve so been there. Crying while he’s crying. Feeling like I’ve just hurt the one person I love most. Here’s the thing that sets you apart from so many parents: the fact that you held her, that you cried, that you felt remorse for her reaction. You will hold onto it and remember the next time. You are carrying so many weights, it’s okay to lose it every once in awhile. You are human. Remember that fact.

    Lots of hugs to you.

    Hoping that she recovers from her UTI quickly!

  12. Jeneil, I just had to add a few words of support to what has already been written. Rhema knows you love her and that you’re doing your best. Everyone loses their patience sometimes, and I bet you lose yours less frequently than a lot of other people.

  13. Oh, we have all been there. I think about the frustrations I have had with my son and how I have yelled at him before I understood all his sensory problems. Don’t be too hard on yourself. I hope she is feeling better soon!

  14. Jeneil, I don’t want to speak for Rhema, but I can tell you this. I had extreme anxiety (not to mention HFA) going on most of my childhood. My mom tried to get the doctors to listen, but because I was 1. growing, and 2. obviously intelligent, no one would. Sometimes I wish she would have fought harder. I can’t help but think, surely, someone out there would have listened if she had kept fighting. But it doesn’t even occur to me not to forgive her. There’s not a doubt in my mind. Sometimes now, I don’t have the words to explain my anxiety to my mom. Sometimes she doesn’t know it’s happening until I’ve scratched my hands to pieces. Every once in a while, I get frustrated that she can’t pick up on my anxiety, but never mad. Never even frustrated for long. Parents make mistakes, and kids get that. It’s okay. I’m sure that Rhema forgives you.

  15. I want to give you hugs and chai bubbletea frappucinos but I have a feeling you’re already being held tight by the best arms imaginable. Continue to cling, He’ll give you what you need. No more, no less. Even when it feels like its all been shot to hell. So much love, my Sister.

    – B

  16. Best wishes to Rhema. And mama, you rock for putting 2 and 2 together, when she wouldn’t tell you what’s wrong, and didn’t the doctors dismiss your concerns at first? You deserve the supermom award every day, but, darn, you just outdid yourself. Nice intuition.

  17. This post is heartbreaking, but what shines through is what a great mother you are. Forgive yourself. I know that it is easier said than done. But try :). You should know how fantastic you are for putting it all together and figuring out that she had a UTI

  18. As everyone has share most have had one of these moments unfortunately, but it does remind us of God mercies…To you mom- take time to make a list of added responsibilities with two kids that have been recently added to your plate in the absents of your husband fighting for our country, prayer, time for yourself, chores(to long to list), shopping, cooking (this one can have this/not that etc..), driver, full time comforter, listener, car maintainer, bill payer, mail opener, doctor appointments (way more than average), keeping up with medications and changes, yard maintainer, church, connecting with family. I know I missed a lot. So, don’t be so hard on yourself. My sweet faithful and loving mother. You are the best mother I know fitting all words in faithfulness. Understand your plate is full for this season in your life and consider making a list laying it before God asking Him to show you family and friends who have the time and desire to help you in this season. Rebalance put yourself time upfront. You may have already made a list but may need to make a few adjustments.
    God knows how to work with us.

  19. Aw, girl, big hugs to you. I know exactly what you mean. Jack had reflux for a full week with me giving him COLD medicine on top of it before I finally put the clues together. And as verbal as he is, he can’t tell me if he’s sick, can’t tell me if he’s in pain, can’t even tell us when he needs to pee! He will wet himself in the car before he’d ever tell Daddy he needs to pee!

    I’ve had my yelling moments, to my utmost embarrassment and shame. For something he cannot even control. Then I spend the next week trying to make up for them. I hope they happen less and less frequently these days as I begin to understand the scope of his delays and differences.

    But girl, your plate is beyond full. Like everyone else said, the Lord forgives you. Forgive yourself.

    And I also see the most amazing thing here … Rhema felt your anger and understood and responded! I know it didn’t happen the way you wished it would have. But sometimes our breakthroughs have the habit of coming at really awful times. She’s there, girl, waiting for you. And she’s patient, too.

  20. You are beautiful and Jesus’ grace emanates from your life and writing. I’m sorry that it is so constantly hard. I’m thankful for His mercy too.

  21. Its okay… everybody yells sometimes! The fact that this was such a surprising moment for both you and Rhema just goes to show that you are an EXCEPTIONALLY patent parent! Your girls are lucky to have you as their mama!

  22. thank God for the Holy Spirit… he for sure intercedes on our behalf… and on this occasion, on behalf of rhema to you. i’m so thankful.

  23. Ugh – I know how bad that feels.

    Accidents still happen around here – too excited, too busy, too distracted, can’t be bothered……..the laundry and the baths. No wonder we have dish washer hands [or is that just me?]

  24. Thank you for such honesty. Those moments crush me. I have to step back and remember I’m human, but them I’m reminded I’m the human in charge of my son’s care. So hard. And…I think my younger two have UTIs…gotta go check those out too.

  25. Please don’t be so hard on yourself! I have been there too (just this weekend, in fact). I try to stay calm but sometimes I just lose it. We are human. And I think Beth has a point, too.

    I kwym about how hard it is when your child can’t tell you something is wrong too, that is one of the hardest things about autism. There’s the language aspect (Bitty can’t tell us) but also the sensory aspect (our older boys are very verbal now but have a hard time describing their own symptoms… at least now they can usually tell us when they don’t feel well but it’s very hard to figure out exactly what is wrong).

    You are an awesome Mama, your girls are blessed to have you (just as you are blessed to have them) :).

  26. Tears. Always tears. I feel for you Neily, though I’m sure I can’t even know the half of it. And yet through your struggles, I learn more of my short comings. I can’t tell you how many times a day I yell at the kids. Just today, Nylis decided to take every single book off the shelf and pile it on himself (a good 50 books). So I go in and yell, “Nylis what are you doing?” And he responds, “I don’t know.” “Why did you do that?” “I don’t know.” I didn’t need to yell and make it an issue. I need to grow in God’s grace and you need to swim in it. You have soooo much on your plate, it’s only His grace that you’re not a screaming lunatic every day in life, which many of us would be if we were in your shoes. You are an amazing mom that I marvel at and admire greatly.

    His mercies are new every morning and his grace IS sufficient.

    I am believing that one day Rhema will be able to tell you everything, so much so that you’ll want her to stop!

    Praying for you, Neily. Hope Rhema feels better soon.

  27. When my Jadon was 5, I remember having a similar “moment” with him regarding his behavior… I sent him to his room rather rudely & loudly.

    On his way up the stairs, he turned to me with large tears dropping down his cheeks and said,

    “Mommy, God sent you here to be our lover.”

    Don’t think I didn’t shed my own tears over this one. Thank God for new days to get it right and for a child’s grace that covereth a great many of our mistakes.

    love and peace~elaine

  28. This made me cry because I can relate so very well. Rhema and Hope have such a beautiful Mommy–they are loved and they know it because you live it everyday. You are dear. I wish we lived closer! Prayers and hugs.

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