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Nights at the Round Table

This isn’t about Chivalry. ¬†This isn’t about Dorothy Parker and the rest of those lushes. ¬†This is about a family, autism, and dinner.

For many years, we’ve been working on what most families take for granted: ¬†eating dinner. ¬†Breaking bread is a fundamental, shared human action. ¬†Eating is required for daily living. ¬†At the heart of every major life event, there is food. ¬†Then there’s my family.

Family meals are my Mecca. ¬†We’re on a pilgrimage, creeping toward a day when everyone appropriately eats the same meal, sitting down at the same table, participating in one conversation. ¬†My three sons with autism have made benchmarks over the years, with time out for pubescent regression. ¬†There’s so much testosterone in my house right now, I think I’m growing a beard and am ready for a fight. ¬†Manly, yes, but I like it, too.

On eating together: ¬†some evenings are better than others! ¬†Progress has been slow, but steady with occasional spikes of dining Nirvana. ¬†Golden moments sometimes happen at dinner. ¬†One child with language delay spontaneously initiates a conversation about something in which everyone might be interested. ¬†Another child suffering from terminal adolescence shines by shocking us with a positive comment: ¬†“This is good.” ¬†I almost can’t believe it’s happening. ¬†They want to remain seated, they’re using utensils, we’re all eating the same meal, and they’re hungry. ¬†No one is vomiting, crying, or screaming (the kids aren’t, either).

When the children were in Preschool and Kindergarten, it was wise to let them eat alone. ¬†My husband and I ran around, working up a sweat, as we constantly re-directed them to sit back down. ¬†We sat them at different tables far apart due to their frequent vomiting. ¬†One seemed to set the others off like Yellowstone’s¬†geysers. ¬†Helpful tip:¬†¬†Avoid group projectile vomiting! ¬†My husband and I ran around again, playing dodge ball, faces red from bending, cleaning, …and dodging. ¬†When I asked the pediatrician about their throwing up, she thought it was just a part of their autism. ¬†I hope we’ve all learned a few things since then.

I consulted a nutritionist referred by that pediatrician.   While charging me hundreds of dollars, she required me to keep a food log for all three boys, including the exact amounts consumed.  I should have charged her.  Teachers were asked to make sure the boys did not discard anything in their lunchboxes, but to send all partially eaten (yuck) items back home.  The nutritionist advised to sneak baby food veggies in spaghetti sauce or soups.  That would have been just great, if only they would have eaten spaghetti sauce or soup.  I ran out of money, almost developed Carpal Tunnel from all the food logging, and ended the consult.

After the fun and games of entering data and writing checks, we structured meals with a visual work system. ¬†“First…, then…”. ¬†But, unless we were talking Oreos and Sprite, they didn’t give a hoot. ¬†My sister sent the boys fun napkin rings to make eating a pleasant ritual. ¬†They weren’t impressed.

Our next attack on dinner was behavioral, with the help of a worker who had Verbal Behavior training.  We had a Food Revolution.  Power to the veggies!  All junk and processed foods were removed from the house.  Five times a day, lovingly plated, attractively arranged (with a Zen-like, Japanese aesthetic), nutritious foods were carefully placed on the table.  And kept there.  And ignored.  We instructed them to remain seated until one bite of each item was touched, smelled, tasted on the tongue, placed in the mouth, chewed, and finally swallowed.  They waited us out.  You realize they do outnumber us, and so they did win.  I reverted back to preparing individualized, repetitively rigid meals.  I was cooking four separate meals  (including one for the adults), three times a day.

By this time, we had taken them to the dentist and learned they all had GE Reflux. ¬†While sleeping, digestive acids were coming up into their mouths and wearing away the enamel of their teeth. ¬†Liquid Zantac was prescribed. ¬†The children started to eat more, but remained extremely rigid about food choices: ¬†Sprite, Poptarts, Oreos, ¬†chicken nuggets, and french fries. ¬†The Occupational and Speech therapists were doing their best to treat sensory issues around sitting and the mouth. ¬†I knew this was horrible and that there had to be a better way somehow. ¬†Don’t laugh, but this wasn’t our biggest fire to put out at that time.

Next, I attended a workshop given by a therapist knowledgeable with diverse autism interventions.  I described the eating issue.  She said to stop all behavioral food plans until the children no longer associated eating with pain!  Her advice resonated within me as Truth, and coincided with finding a pediatric neurodevelopmental specialist.

This was the venture that finally proved successful for my boys. ¬†After a round of tests, we found that two of them needed to be gluten-free. ¬†All needed to be on a rotation diet with a few foods. ¬†Nutritional supplements were suggested. ¬†Now my handsome boys no longer resemble prison camp victims. ¬† They eat almost all of the fresh vegetables and fruits that are offered. ¬†They enjoy a wide variety of ¬†protein and grains. ¬†They’re willing to try new foods! ¬†Years ago, my mother-in-law prophesied I wouldn’t have pots big enough to feed them. ¬†I think she may be right.

The only hitch right now is my husband. ¬†He mentioned to me he’s thinking about becoming vegetarian. ¬†My husband. ¬†But I’ll save it for another post.

No Responses

  1. bensmyson says:

    Why is it somehow perversely comforting to know someone\’s life is tougher than mine? Thanks for making me feel better. :)

  2. momof3au says:

    Glad to have helped.

  3. Deb Haines says:

    Do you still have those napkin rings? I thought you knew those were for you and neil. great insight – to reinforce that the way to TRUTH in not easy.


  4. momof3au says:

    Re: napkin rings- the dogs ate them. We use unique brass ones now that they no longer chew on objects (the kids, I mean).

  5. Jennifer Brook W. says:

    Would love to talk with you more about the pediatric nuerodevelopmental specialist you used???…..and thank you for describing my everyday sooooooooo well since I\’ve never put into words yet.

    Somehow I live in a universe where my daughter gags and vomits at the sight of a banana and that happens to be my son\’s favorite food. Rock on!!!

  6. Kirsten Kainz says:

    Just fantastic. So glad you are eating together and enjoying it. A lot of us could stand to drop the gluten.

  7. Cathy Jameson says:

    We have our own meal time madness here. Five kids that includes one picky preschooler, one always hungry baby and our special needs kiddo….ay yi yi!! Thanks for sharing your story. I know we\’ll make it to proper etiquette statuses some day.

  8. Alison Reeves says:

    Where are you? Who was yoor workshop therapist? Who is your pediatric neurodevelopmental specialist?

  9. momof3au says:

    Hi, Alison,
    My name\’s Alison, too.
    \”Where are you?: I\’m a NC mom of 3 boys with autism located in Durham.
    \”Who was your workshop therapist?\”: Tracy Vail
    \”Who is your pediatric neurodevelopmental specialist?\”: Dr. Karen Harum
    Thanks for commenting, and hope this information helps.

  10. Thanks for the information friend

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