Without compulsory means

The nurse answered the phone after several rings. “Primary Children’s Down syndrome clinic—may I help you?”

I took a deep breath. “Yes, I’m calling with a question about my son Thomas. He’s three-and-a-half and will only drink out of a bottle, and I’m not sure what to do.”

She started the inquiry. Had I tried offering a sippy cup at mealtimes? Had I tried putting his favorite drink in the cup? Had I tried brightly colored cups, cups with straws, cups with sport-bottle tops?

I told her we’d tried everything, more than once. That Thomas stridently avoided the very sight of a cup—any cup. That if we tried to make him hold one or drink from one, he got furious.

“There’s only one solution,” she said. “Take the bottle away. When he gets thirsty enough, he’ll drink out of anything you offer him.”

I hesitated, remembering the debacle that followed Thomas’s tonsillectomy the previous year—he refused liquids for days due to the pain of swallowing, and finally ended up back in the hospital for a week with pronounced dehydration. Even when suffering, he was not easy to entreat. And it seemed callous to take away his bottle so abruptly. What if he just wasn’t ready to learn? He didn’t even hold his own bottle yet.

But he’s three-and-a-half, I argued with myself. Of course he’s capable of using a cup. He just doesn’t want to. And if I didn’t grab the reins, who knew when he’d give up the bottle? With a shudder, I pictured a stocky twelve-year-old Thomas guzzling a bottle of chocolate milk while he watched cartoons. At least by then he’d probably hold it himself.

I called the state health department for children with special needs to get a second opinion. Then I called Thomas’s pediatrician for a third. They all said the same thing: It’s time to lose the bottle. He’s perfectly capable of using a cup. He’ll drink when he’s thirsty enough.

Wanting to cover my back in case things went awry, I asked the pediatrician’s nurse to note her recommendation in Thomas’s chart. Then I emailed Reed to report my findings as well as my determination to get Thomas drinking from a cup as soon as possible. “I’m okay with giving this a try,” Reed said, “as long as we both realize there’s a chance Thomas just isn’t ready to give up the bottle.”

I blanched. “He’s got to be ready,” I told Reed. “He’s got to.” I couldn’t find words for my growing desperation. Thomas didn’t use or (as far as we could tell) understand even one spoken word. He still stumbled when he walked. He would not chew or swallow most foods, and would not even attempt to feed himself applesauce with a spoon. Of course it wasn’t fair to compare him to his siblings, who self-fed by age 1 and ran by age 2 and held complex conversations by age 3. But even in relation to his peers with Down syndrome, he was far, far behind.

I gathered all the bottles from the kitchen in a plastic grocery bag and headed for the outside trash can. On my way through the garage I paused, reconsidered, and stuck the bag on top of the deep freezer. Back in the kitchen, I lined up the assortment of cups we’d accumulated over the past few months and poured a few ounces of milk into the most promising candidate. Then I waited. And the morning and the evening were the first day.

Incensed at being offered a cup instead of a bottle at bedtime, Thomas yelled himself to sleep and awoke miserable. I put him in his highchair for breakfast. When I opened the refrigerator door he grinned and chuckled in his good-natured way, heh heh heh. But when he spotted the cup in my hand and the steel in my jaw, his face twisted in anger, and breakfast was over.

That evening, after a long and fretful day with no fluids, Thomas grabbed my hand and led me to the refrigerator. When I opened it, he guided my hand to the gallon jug of milk. As I carried it to the counter he chuckled again. As I poured some milk into one of the cups, he fell silent. And as I offered him the cup with firm resolve, he held up his hand in protest, and began to weep with utter abandon.

My 12-year-old son, Andrew, ran into the kitchen to see what was wrong. When he saw the cup in my hand, he knew. After a few moments of watching Thomas sob, he turned to me with pleading eyes. “Mom, he’s so sad. He’s so sad.” But I thought again of 12-year-old Thomas sucking on a bottle, and I would not be moved. And the morning and the evening were the second day.

At dawn I removed Thomas’s pajamas and changed his kinda-wet diaper, bracing myself for another intensely frustrating day of fruitlessly offering him the cup and keeping him entertained between attempts. But that’s not what I got. No crankiness this time. No outbursts of anger or dismay or despair. Just a weak arm lifted again and again to push the cup away.

Depleted, Thomas was ready for bed early that night. Tomorrow, I thought. Tomorrow he’ll finally break down and accept the cup. I could no longer accept an infant in a preschooler’s body. I could no longer move forward without some sign of progress, some cause for hope. He must give up the bottle. He must.

But as I lifted his limp body to carry him to the bedroom, something broke within me. Tears came fast. And a feeling pressed hard into my chest, a feeling only partially captured by words: my son, my son.

I laid Thomas on my bed, then walked straight to the garage for the sack of bottles. As I filled one to the top with milk Reed looked at me in question. “This was crazy,” I said, crying hard. “Crazy.”

Reed nodded, and smiled, and followed me to the bedroom. When we entered, Thomas slowly lifted his head. With glazed eyes, he looked at the bottle in my hand, then looked at our faces. And all three of us laughed.

_________________

Without compulsory means

Comments

  1. Crying now. This captures much of how I think God feels about me sometimes, resisting any step unfamiliar. Crazy, He must say.

  2. Andrea R. says:

    My sweet friend,
    It doesn’t matter what the experts say. You are his mom and you know best what he needs. Trust your gut. Listen to the Spirit. I know, because I’ve been there too.

  3. Another touching and poignant view into your life.

    You know, it strikes me that you and Reed are learning to be parents all over again. We all go through the uncertainty and difficulties of raising these little people, but mistakes made and lessons learned with my older children have translated into my becoming a better father to my younger ones. Battles waged in years past yield to patience, an earned confidence, and a better perspective.

    But the rules have changed for you, and you are learning a whole new game.

    Thank you for sharing.

  4. Antonio Parr says:

    Astoundingly beautiful post. Astoundingly eloquent, as well.

    God bless you, Reed and Andrew.

    And God bless Thomas.

  5. This hits entirely too close to home. I could fill a book with all the thoughts this provokes.

    When my oldest was still an infant, I was very concerned about doing everything the right way or the best way, and I was asking advice from a mother of five about feeding or breastfeeding, and she said, “Rebecca, just do what’s in your heart. If you think she needs to nurse, nurse her.” At the time it was liberating, and to an extent it still is, but sometimes as a parent–especially as my kids get older–I don’t trust my heart. And if I can’t trust my heart, and my mind’s fresh out of ideas, what can I do?

    I can’t tell you my relief, though, when you gave him his bottle at the end.

  6. Kevin Barney says:

    Beautiful, as always.

  7. Really, in the long run, so what if he wants his bottle… right? He will give it up when he’s ready. And, you know, eventually he’ll be old enough to bribe, ;-)

  8. As a dad of several kids of various special needs, I remember some advice a pediatrician friend gave me on potty training, which I think is similar in that THEY have to decide when they’re going to do it – “nobody walks down the aisle in diapers”. That was both comforting and not, as I considered whether some of my kids would EVER walk down the aisle.

    And it seemed that I would be changing my 5 y/o’s poopy diapers in the middle of the night every night forever, or that I would be eternally trying to potty train 4 and 5 year olds that showed ZERO interest.

    But now, although my kids continue to have plenty of problems, 4 of the 5 have managed to get potty trained! And the one who isn’t, is only 11 mos old, so he gets some slack (for now)

    So I guess what I have to say is hang in there, we’ve been there, and they do manage to figure it out eventually.

  9. I can testify very personally on this issue.

    I wet my bed until I was fifteen years old. Yes, you read that right!

    My mother tried everything: psychologists, a psychiatrist, a renowned specialist at UCLA, an electric wet-bed alarm that always woke me too late to stop. She even promised to buy me something unusually expensive (I no longer remember what, maybe a TV for my bedroom?) if I could go 10 days without nocturnal micturition. No could do.

    A true saint, she washed those sheets daily for 15 years with narry a complaint, and never once humiliated me (or let the other kids do so). We worked together on a strategy for me to attend the one sleepover of my youth that I couldn’t get out of — I stayed up all night.

    I thought I would never be able to get married (who would want a husband that wet the bed). Little did I know at the time that there might be another impediment to getting married… :)

    Now both problems are resolved: I have a husband, I don’t wet the bed, and I am largely free of the psychological scarring of what could have been a nightmare I never woke up from.

    Kathryn, because of my mother’s unconditional love and near-infinite patience, not one but two important conditions that might have brought shame to me did not. Unless bottle feeding is deleterious to your child, do not let others bring shame to your child’s development.

  10. Thanks for this, Kathryn. I can only imagine the trials you have. It really is a blessing to be allowed these glimpses into your life. God bless you and your family

  11. Oh, Kathryn. Hard stuff.

    You’re a good mom.

  12. Kathryn, I’ve read your blog before but haven’t commented yet. On this issue I must. First, to say yes it is so heartbreaking to have a child beyond the age of infancy doing “infant” things (like bottlefeeding or refusing table foods.) Society is so set up to view these things as milestones that should be quickly, and sometimes harshly, met. Second, I am so glad you listened to what your heart said and met Thomas’ very clear need.

    In many ways I feel my son is doing fine for his age, compared to his peers with Down syndrome. Yet it’s those rough hurdles that make me long for him to advance to the next part of life. I have to constantly tell myself that he will get there. I rely a lot on faith and I am sure you do too.

  13. Like others, this hits so close to home, only in our family it’s thumb-sucking and potty training. Parenting is rough.

  14. Yes, you are a good mom.

  15. Kathryn Lynard Soper says:

    I appreciate these comments, all.

    Parenting is difficult, indeed. But it’s slowly becoming clear to me that, for the most part, the difficulty is a product of my flawed expectations, wants, and assumptions. That’s one reason why parenting has such potential to transform us: it reveals our fabrications of mind and heart leads us to discover what’s real and what’s true and what’s good–if we allow ourselves to be changed. Which process I, for one, tend to vehemently resist because it hurts so damned much.

    My feelings about Thomas’s development follow an increasingly predictable cycle. For a time I accept What Is, and the living is easy. But then my fear and doubt starts to build up, and I resist What Is, and I become determined to change it. And the more determined I become, the more clouded my ability to perceive reality becomes. I become fixated on some mark of progress, thinking it’s necessary for us both to be happy. I build up a hard shell. I make us both miserable for a while. Then the shell cracks under strain, and I’m able to embrace What Is once more.

    This is, of course, a familiar pattern for many parents, although parents of kids with special needs are especially vulnerable simply because the assurances regarding typical kids’ development don’t necessarily apply. (Such as, “he won’t go to high school in diapers.”)

    The situation requires far more faith than I often have at hand–faith that Thomas will grow and progress in essential ways in his own time, AND faith that, ultimately, there are no essential ways. That whether or not he ever talks or eats or otherwise lives like a typical kid, his life is rich with purpose and meaning, and so is mine.

    But beyond issues of kids with special needs, and parenting in general, this experience with Thomas taught me a lot about my relationship with God (as Steve mentioned) and the nature of righteousness. More on that later, if I find a few quiet minutes.

    In any case, I hereby lay claim on the 2009 “Made Evans Cry” Niblet.

  16. Kathryn,

    YOu manage to write what I feel. Our Gracie is also on the low functioning side (so far) and it is hard for me to see her peers with Down Syndrome doing SO MUCH MORE than she can do. I appreciate the cycle of “accept/fall behind/reevaluate/accept”. Frankly, who cares if he is still drinking out of a bottle when he is 12. He is happy, you are happy..etc.

    BTW..Gracie will drink yogurt out of a straw (it is thick…) but she isn’t going to be giving up the bottle any time soon….. sigh.

    You are doing great. That Thomas is a great kid…

  17. a) you did great
    b) MDs can be so cavalier about advice sometimes–a healthy reminder that we aren’t all on the same time table and ideas have to make sense in a given setting.
    c) this is a thousand times better than the old Puritan technique of “breaking” a child’s will
    d) I think most adults would be perfectly happy drinking from a bottle if society would let them.

  18. “there are no essential ways”

    My heartfelt wish is that every parent would embrace this.

  19. good for you. I do work as an OT though in a geriatric setting. Could you see if you can meet w/a pediatric OT, they might have some useful suggestions for down the road. Maybe there are some tacile issues w/the cup? (I don’ thave kids so don’t know too much about the sippy cups. But are there sippy cups w/a rubbery tip? just curious if he’d do better w/a cup w/a rubbery type edge instead of the plastic)

    I recall you posted recently that he also has autism. Since those w/autism tend to like routine/structure, I wonder if you just introduced the cup too soon. Perhaps there is a way to gradually introduce it and transition it into his life.

    Awhile ago I worked w/a young man in his 20s who had a developmental disability (not Down’s), his parents had feared giving him a cup and didn’t know how to manage him…for a long time they had provided him liquids via a turkey baster as they didn’t know how else to help him.

    Anyway..good luck as you love and care for your son!
    Glad all 3 of you got a good laugh at the end! And your other son’s learning of compassion via saying your son looked sad is tender!

  20. You are doing amazing things. I was just reading in Sarah Hrdy’s book Mother’s and Others how the child-rearing consensus in the 60’s was to let children cry at night so they would learn who was in control. The current research is that children whose mothers indulged them and answered their cries had the most well adjusted children. Maybe he will know the best time to give up the bottle. Me, I wish I could drink from a bottle now too. Anyway, thanks for this. I love that you share with us your life with Thomas.

  21. merrybits says:

    Beautiful! I can’t tell you how much this post means to me, now at this moment. My daughter is struggling with Algebra 2. She’s way too young to be in the grade she’s in (10th and she’s 14 – long story) and has always struggled with math. Tonight I have been thinking about “leveling down” and putting her in Algebra 2 MCR (slower paced). I don’t know why it’s such a big deal because considering the big picture, it isn’t. Thank you so much for giving me the courage to allow my daughter to achieve at her own pace. Thank you.

  22. Whoa on the post.

    Whoa to this, too: But it’s slowly becoming clear to me that, for the most part, the difficulty is a product of my flawed expectations, wants, and assumptions. That’s one reason why parenting has such potential to transform us: it reveals our fabrications of mind and heart leads us to discover what’s real and what’s true and what’s good–if we allow ourselves to be changed.

    Truth, sweet truth.

  23. Oh Kathryn… you are such a good mama.

  24. Quite touching. I suppose most doctors would try to use predefined parameters when dealing with Down Syndrome Children. What I’ve been told by our paediatrician is learn ‘to listen’ to your child. If you want to wean your child at a later stage, that’s OK, provided he’ll accept this.

    Beautiful post.

  25. beautiful post

  26. Thanks, again, for these comments. It’s fascinating to see how different elements of the story resonate with readers for different reasons. And rewarding, too. It’s always a risk to publish details of your personal life, and I appreciate the reminders that (in most cases) the potential benefits outweigh the risks.

    nita, that turkey baster story perfectly illustrates why I am sometimes driven by fear. GAH!!

    merrybits, best wishes.

  27. Jay Hinton says:

    I have found that parenting really is the best way to understand our relationship with God. My toddler tries my patience each day, and each day, I find my self more and more in love with and devoted to him.

    Thanks for this, Kathryn. Very moving, especially this part:

    “My 12-year-old son, Andrew, ran into the kitchen to see what was wrong. When he saw the cup in my hand, he knew. After a few moments of watching Thomas sob, he turned to me with pleading eyes. “Mom, he’s so sad. He’s so sad.”

    That broke my heart.

  28. Stephanie says:

    I cried all the way through this. And was so relieved you gave him the bottle at the end. Parenting is tough. I am not going to presume to compare my experiences with yours, but I do admit that parenting is teaching me a lot about patience and accepting my children for who they are. Thank you. (My 5 year old still sucks his thumb when he’s at home, and I’m not too concerned. He is my third and uses it as a coping mechanism to comfort himself. The idea of taking it away or punishing him for comforting himself kills me. I was relieved when his pediatrician said not to worry about it at his check-up).

  29. Stephanie says:

    I also appreciate the tender words of Andrew. It is so sweet to see the love siblings have for each other. I think siblings are a great gift to give children.

  30. Mark Brown says:

    Words to live by:

    1. Never get involved in a land war in Asia.

    2. Never go up against a Sicilian when death is on the line.

    3. Never get into a power struggle with a 3 year old.

    KLS, you are a treasure. I appreciate the experience and insights you have shared here. I especially like the way you connected section 121 to parenting and family life.

  31. Thanks, Jay and Stephanie and Mark.

    Mark, I’d amend your #3 to Never get into a power struggle with reality.

    As Byron Katie says, when I argue with reality, I lose–but only 100% of the time.

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